Our Little Man

Happy Birthday Little Man!!!!!!

2011-12-19T01:37:00.002-06:00

SUCH a long time between posts! Soooooo much going on, but it will have to wait for another day.

I can't believe another year has passed already. It seems like you were just a peanut yesterday.

This past year has been an exciting one for you. You have made sooooo much progress with your PT and developmental areas! You are sitting up on your own, nice and straight. You are crawling and talking more. You are getting used to your iPad and are starting to realize that "school" can be fun. You went swimming for the first time, and rode a trike for the first time too! You LOVED it!

Most notable is that you have suddenly started gaining weight and growing!!! In the last 3 months, you have gained FOUR POUNDS and now top out at 28 pounds, 11 ounces. The most you have ever weighed with REAL weight. You have also grown 2 1/2 inches and are now 42 1/2 inches.

You are now starting to do typical "toddler" things.....crawling, exploring, getting into things. You are communicating more and letting your oppinion be known.

We can't wait to see what the next year brings for you. You seem to be loving the new house. We will have your stander soon, and hope to get a trike for you this summer. We will continue working with the iPad for both school and communication.

Happy Birthday Sweet Boy!!!!! Mommy and Daddy are so proud of you. Have a great year!

So long old Friend!

2011-09-10T03:53:00.001-05:00

Michael Hart March 8, 1947 - September 6, 2011

He passed away Wed, and I will miss him dearly. He was a bit..um...cantankerous, but we always got along well. He was not one to suffer a fool, LOVED a debate, and respected a person's intelligence over race, creed, income, or education level. He has single-handedly done more for literacy in the past 15 years than anybody I know of. He is the inventor of the e-book, and founder of Project Gutenberg - the LARGEST collection of books online.

He was an awesome mix of geek and librarian. Most of my computer knowledge came from him. As did the willingness to give any book a chance. I promised him that I would start volunteering again after we moved to our new house. I'm sad that he won't be there to give me my assignments. I am proud to have been a part of Project Gutenberg, and proud to have been able to call Mike a friend. On behalf of book lovers, teachers, and homeschoolers around the world - Thank you and Well done Mike! R.I.P.~

Obituary for Michael....

Please go visit http://www.gutenberg.org/

Amazing and Grateful......

2011-07-20T01:34:00.001-05:00

Hello all! So much to report today.

If you remember from our last post, there was a bit of drama going on in the Special Needs Community in the last few weeks. Serious drama - that involves missing awards, money, and the police.

Par for the course, when things get tough, Special Needs parents and friends get tougher! If you remember, I told in the last post how several parents and some of their friends were trying to figure out a way to get the families who "won" that giveaway, their iPads. Enter Mission: iPossible!

We are grateful and humbled to announce that Christopher was selected to receive the FIRST iPad that they were able to obtain!!! It has been sooooooo hard to keep it a secret this week. We are beyond thrilled to have received the iPad. Christopher is not too sure what to make of it, but was VERY happy to find the entire 1st season of Blue's Clues installed as a reward. LOL! As I have said to part of the Mission: iPossible Team, thank you just doesn't seem enough.

I know that these folks will work hard to try to verify the original winners and obtain iPads for all. I know they are going over and above to make SURE that people know they are on the up and up. I HOPE that they are all able to have sweet, sweet dreams knowing that they have done God's work here. We also want to thank the other WINNERS for their prayers and gracious comments throughout all of this. Many asked or commented how happy they were that Christopher was the first awardee. That means the world to us. It also means that we will be helping to do what we can to make sure the others get this chance as well!!!! :)

I know that sounds crazy, but we really had no other way to obtain an iPad. Christopher's will be used more as a communication device, to help with homeschooling, and to record therapy and doctor's visits without having to drag a bunch of paraphanalia along. This isn't the be all, end all to homeschooling or communication - but it frees up DME money so that we can get things like a stander or gait trainer.

As we stated in an e-mail to Mission: iPossible Team, Christopher has already shown that he knows more than he has previously let on. I should back up a bit for the new folks here. Christopher, in addition to Down syndrome, has had one or more strokes, heart defect, Infantile Spasms, and has crashed many times ending up on the vent. All of this has caused a considerable amount of brain damage - between 40% and 60% - according to those in the "know". We have been told that he SHOULD be in a persistent vegetative state because of the way his brain looks. Obviously, he's not. We are in uncharted waters here. Christopher is smart (I'm not just saying this because I am his mother. Ha! Ha!). He is smart enough to know NOT to let us know everything he knows, because it means more work for him! The iPad helps us break through that barrier.

We also took the iPad along to therapy and his neurologist appointments today. It kept him entertained (doing "school"), served as a camera and video camera, AND his neurologist was so impressed! It was the closest I have ever seen him to crying. :)

So once again - THANK YOU, THANK YOU, THANK YOU!!! If you would like to follow along, or if you would like to see how YOU can help, head on over the the Mission: iPossible blog. You won't be sorry that you get involved in this one. :)

Keep an eye out for more pictures and videos of Christopher using his iPad and other devices!!! Thanks!

Hugs!

Steph and Christopher

BTW - This gift means even more to us know that it came from a firefighting family!!!! Pretty much everybody on my Mom's side of the family have been firefighters. My Grandpa was Assistant Chief in our town. Thank you again!

That's All Folks!

2011-07-11T21:40:00.004-05:00

If you look a few posts back, you will see that we were excited to announce that Christopher had won an iPad2 and $500 worth of apps. If have been anywhere in the Special Needs community lately, you know that the worst kept secret around is that this entire thing was a mess.

Mike, the author over at Marissa's Bunny, was the mastermind behind the whole thing. Frankly, I'm too tired to speculate WHY he did it, or the ins and outs of the whole thing. I am leaving the link to Marissa's Bunny over on the side of the page. You can go and read if you are interested.

What we DO know is that this person had no business collecting money on any body's behalf - let alone a charity that ended up not existing. We also know that at least 40 Special Needs families have been affected by this.

Forty families, like us, have planned therapy services, education plans, and even the chance to hear what their child is thinking on getting these devices. For us, we planned on using the iPad instead of purchasing a communication device that costs between $6000 and $10,000, depending on accessories and software. We have a limited amount that we can spend on Durable Medical Equipment per year. Those things include standers, AFO's, Gait Trainers, Communication Devices, Bath Chairs, Etc.

Because Christopher is doing so well in his rehab after his surgery, we have a LOT of equipment that is needed. Equipment that we never thought he would use. Now we are faced with deciding what we are going to do this year - get him standing and potentially walking? Potty training? New Special Needs Car seat? or allow him to communicate on his own for the first time in 7 years?

What ever happens, Christopher will get what he needs in the end - legally! We'll figure it out and move on.

As for him, there is an investigation on-going. We will let the authorities do what they are going to do. I have to assume that his life is going to be not very pleasant in the near future. He will be looking over his shoulder for awhile yet.

If you want to read more about it, you can go on over to Love That Max. Be sure to read the comments section, as it includes comments from Mike himself and a copy of the last e-mail he just sent trying to distance himself from the situation and confirming that there are no iPads.

If anybody out there reading this and was one of the original winners of the iPad, please head over to our friend Heather's blog, Little Wonders. She and a few others are going to try to get these kids what they were promised (the iPads), but they need verification of the winners. Even THAT has come under question.

This has been going on for many weeks. I have gone back and forth from being mad to hopeful, to suspicious, now just plain disgusted. There are lessons here for all, and opportunity for many others. It is still a sad day in the Special Needs community to think that one of our own (if he IS the parent of Marissa), has targeted our own community for a scam and used his kids to do it.

Stephanie

Can I have your attention????

2011-05-24T22:39:00.002-05:00

As the Mom of a child with Special Needs, I wear lots of hats. Nurse, Mommy, therapist, teacher, insurance agent, travel agent, and the biggest job I have is ADVOCATE. I don't just advocate for MY son, I advocate for all people with special needs.

One of the absolute BEST campaigns is Tim Shriver's Special Olympics "Spread the Word to End the Word" Campaign. The word we are talking about? Retard or retarded.

You have all heard people use it, or you might have yourself. "Oh that is so retarded" "You are SUCH a retard!" Yeah - we get that you think you are joking. The thing is - it's not funny. You are using those words as a slam - as a putdown. Your aim is to bring down somebody to the level that you THINK my son lives at. The only one you are bringing down is yourself. DOn't quote the dictionary to me. Don't site your right to free speech. To paraphrase Tim Shriver, you have the right to make a fool of yourself. We also have the right to tell you HOW those words affect us.

Don't believe me? Maybe this will help:

Steph

Before the World Ends.....

2011-05-21T04:44:00.000-05:00

Hello all!!! The fact that I am posting might be confirmation that the world really IS going to end today! LOL! (Just kidding) I actually had 2 posts ready last week when Blogger broke. They never came back. :( So, I am going to give the short version here.

We have been SUPER busy. We are going to Chicago at least once a week, sometimes more. Christopher is getting PT every week, and we are trying to cram in as many doctor appointments as possible while we are up there. Christopher is doing GREAT in PT. He is getting in the pool a couple of times a month. He really likes the pool.

PT Pool at La Rabida

Medical stuff is going to have to be a whole other post - we don't have all day here. LOL! Most of you know that Christopher is on what is called a "Medically Fragile and Technology Based Children's Waiver". This waiver does away with income requirements for a medical card and helps to provide in-home nursing + respite, and a few other things. Our renewal was due in March - we missed it by one point - because Christopher wasn't hospitalized enough! The long and short of it is, the criteria they use to decide if you are qualified are definitely biased towards kids with trachs. NOT that children with trachs do not need the waiver - just that there are some children who are medically fragile and don't have trachs that also need the waiver. Needless to say, we are appealing that decision. That involves a TON of doctor appointments, lawyer visits, etc. I'll keep you updated.

Big Chris and my Dad (Papa) started taking TaeKwonDo classes in March! At 69, I think Papa is the oldest person at this studio. They seem to be enjoying it and are getting in shape - I think. I guess stooped over and gimping is a shape. LOL! They have already been tested and have received a promotion to the next belt - orange! My nephew also attends and is a 2nd Degree Black Belt at age 10. He teaches classes and belongs to a demo group.

Big Chris also has more news! He has decided to get Baptized in our church!!!!! This is a big step, and we are really proud of him. He decided this on his own. Things worked out so that he will also be confirmed the same day. We are also lucky that our new Bishop of our diocese will be visiting that day as well. So our regular priest will be Baptising him and our Bishop will be Confirming him! Christopher will also be getting re-dedicated. He was Baptized when he was a baby. We had to do it quickly as we thought we were going to have to Life Flight him to Peoria to go straight into open heart surgery. He can't be Baptized again, but he will receive his candle as he should have if he was Baptized in the Church originally. That will be happening tomorrow - May 22, 2011.

Our house is still for sale. We have had a few people look and a couple came back for the third time on Thursday to decide between this one and another one. We haven't heard anything yet, but keep your fingers crossed. Our new house has been painted. About two weeks after we got the basement family room set up in the new house, it flooded from all of the rain we were getting. It hadn't done it in over 3 years, so we thought we were safe. :( We had to clean up an re-group. We are going to be working hard on getting the rest of the house cleaned and things put away as much as possible in the next few weeks.

I am also going to be re-organizing the blog a bit. Don't get upset if a link isn't on the side - just check the pages above. I am going to move most of them up there. Our blog roll is just getting too long to keep on the side of our blog! :)

I will be doing a separate post on this, but Christopher was lucky enough to win an iPad2 and $500 worth of software from Marissa's Bunny! Stop on over for your chance to win one too!

Hugs!

Steph

Busy, busy.....

2011-03-31T04:52:00.000-05:00

March has been a busy month for us!

We are getting things put together at the new house. No, we haven't moved yet. We have moved pretty much all but the are essentials to the other house! We have been weeding stuff out,but we STILL have too much IMHO. We were finally able to afford the painter to paint all of the basement level. Now we can start working on getting things put away. Christopher's home school room looks like a tornado hit it. :) Still trying to figure out the best way to organize it. That will probably change any number of times before we figure it out. We want to try to have as much done as we can, and as many things put in their place before we move in for real. We had two weeks to pack an entire house the last time, and be out on Christmas Eve! We are still unpacking boxes from THAT move. We won't ever do that again.

We showed the house 3 times in one weekend at the end of Feb/beginning of March. We have had nothing since. I believe we are going to try for a different agent and see what happens.

Christopher was doing really well in therapy for awhile. Suddenly, he started getting puny on us. And by puny, I mean our poor PT was trying to hold up a wet noodle! He had lost more weight too. So, we talked to our ped and ended up checking him into the hospital a couple of weeks ago for Failure to Thrive. I won't go into all the details here, but it was not a very impressive stay this time around. However, the GI decided to REDUCE the number of calories in his diet. He was on 4800 calories per day when we checked him in, and losing wight. So far, it seems to be working! I don't know if he has gained any weight yet, but he is MUCH perkier and happy.

I went into his room today to get him out of bed, and found him at the other end of his bed, turned around, and he had thrown ALL of his stuffed animals out or to the head of the bed. He clapped & said "Did dat!" Ha!Ha!

That is about it on the updates for now. I will try to get more pictures on here. He is having a serious camera phobia right now. He turns away as soon as he sees anything that resembles a camera pointed in his direction!

Hugs!~

Steph

Win a free iPad!

2011-02-27T09:54:00.000-06:00

Go NOW over to Marissa's Bunny blog and enter for your chance to win a free iPad!

If you have never been, Marissa's Bunny is a blog by a Dad and is dedicated to his daughter who has infatile spasms.

Marissa's Dad is strarting a foundation, also called Marissa's Bunny Foundation. This is a merrit based give away, and ANY special needs child can benfit. Dad's bosses have genrously donated 5 iPads to give away (awesome!).

So run on over and leave a comment and/or send an e-mail. Good luck!!!

Hugs!~

Steph

Like Pancakes???????

2011-02-22T01:19:00.001-06:00

Like pancakes? Want an easy way to help raise money for Children's Miracle Network Hospitals? Looking for something new to add to your feeding therapy sessions? Here is your chance!!!

Stop by any IHOP on March 1 for a FREE short stack! Load up the kids and hit the IHOP!!!!! Enjoy!~

You can also sign up to receive a wake-up/reminder call on March 1 from your favorite celebrity! Yea!
http://www.ihoppancakeday.com/

(From the IHOP website)

About National Pancake Day

March 1, 2011

Since beginning its National Pancake Day celebration in 2006, IHOP has raised more than $5.35 million to support charities in the communities in which it operates. While IHOP's National Pancake Day typically takes place on Shrove Tuesday, this year, the company will host its free pancake event one week earlier on Tuesday, March 1 to build buzz and excitement prior to Shrove Tuesday. With your help, we hope to raise $2.3 million for Children's Miracle Network Hospitals and other local charities!

Known also as Fat Tuesday or Mardi Gras, National Pancake Day dates back several centuries to when the English prepped for fasting during Lent. Strict rules prohibited the eating of all dairy products during Lent, so pancakes were made to use up the supply of eggs, milk, butter and other dairy products...hence the name Pancake Tuesday or Shrove Tuesday

~Steph

Sweet Lois

2011-02-03T09:32:00.000-06:00

I am so sad to have to share this news. Dear, sweet Lois passed away this morning in the arms of her parents. She fought so hard to overcome leukemia. In the end, her little body just couldn't do it.

February 1-6 is Leukemia Awareness Week. If you do nothing else, please show your support by painting your FB profile orange, donating to the Leukemia/Lymphoma society, or sign up to be tested to see if you are a match for a bone marrow transplant.

In the mean time, please stop by Lois's blog and leave a message for her family. R.I.P Lois!

Red Rover, Red Rover.....

2011-01-12T16:55:00.003-06:00

I have to say, this is by FAR the best money we - err, Santa - has ever spent on a toy! We are talking about the Red Rover, Red Rover game by Mattel. (I was not asked to review this and have received nothing for it.)

It was picked up as sort of an after thought. Christopher has a "thing" for dogs. His favorite sign is dog, and one of his favorite shows is Kipper the Dog. He is on the waiting list for his assist dog too. :)

It usually takes Christopher a while to warm up to a new toy, which is why we have so many still in the box! However, he was taken with this one right out of the box.

We played on the lowest level - Puppy level. You take the bones and spread them out face down. For most children, this would mean all over the room but it worked well just on the table. I put them all out at first, but that seemed a little too much. He wouldn't turn them over, so we also put them face up so that he could see the colors. You push the dog's nose and Rover asks for a colored bone. I put three bones in front of Christopher and he chooses a bone and inserts it in Rover's mouth (great OT work here!). Rover then tells you if you have the correct answer. Rover gives nice positive reinforcement when the answer is correct. If the answer is incorrect, he asks for another bone.

Christopher was able to get all but one correct! We were so happy, and so was he! Especially since there were several colors that we haven't reviewed yet, like pink, purple, brown, white, and black. The only one he did not get correct was black.

All in all, this was a great investment! For mobile kids - it can be used to wear them out. Hide the bones all over your house. The next level asks for colors, letters, numbers, and shapes. This will last us a while. It is also nice because you can make the game as long as it holds their attention.

I would think that it would not be too hard to make a file folder version of this game that you could customize accordingly. However, part of the fun is Rover's response.

Hugs!

Steph~

P.S. As soon as Blogger lets me put picures on the blog again, I'll post one of Red Rover.

December Review (Long - sorry)

2011-01-02T06:07:00.001-06:00

First, we want to wish you all a Happy New Year! We hope 2011 brings great things for ALL of our friends out there.

December was crazy busy! Big Chris had a couple of 70 + hour work weeks. We have the usual holiday "stuff" and Christopher's birthday on the 19th (I STILL cannot believe he is 7 already!). We have been travelling to Chicago at least once a week for therapy(ies), and an occasional doctor appointment. Can I say again how much we LOVE our therapists?

Obligatory Birthday Picture!

We are really starting over from the beginning. Most of Christopher's life up to now has been getting him to the next month alive. I hope I don't jinx it, but he is finally healthy enough to concentrate on much of what he has missed out on. We have also picked up quite a few sensory issues along the way. So our therapy sessions are geared toward "waking up" those muscles that haven't been used, or were too floppy/loose to be useful, overcoming our multitude of sensory issues, and attempt to get the kid up and moving!

Here are a few pics of therapy fun:

Swinging in OT with Theratogs to "wake-up" those muscles!

PT Pool Therapy - First time in the pool!

One the home school front, we worked on lots of things this month.

We had books:

And a big hit was the sticker sheets from Oriental Trading. If you are looking for something fun (and a fine motor activity) these are fairly inexpensive. They are sold in packs of 12 and average about $3.00. Christopher really likes them, as long as he can do the ones with the larger stickers. Something we will continue to work on:

We worked on 4 piece puzzles. These are from a teacher's group that I belong to. Elaine made these. Lots of talent there!

We did worksheets. Again working on larger vs smaller concepts. He did really well with these! From Preschool Printable of the Day from Preschool Palace:

He worked on matching like items with these flashcards. I am not sure where I got them from (If you recognize them, please let me know so I can credit properly). However, they were from the UK so some of the items were not familiar to him. He did VERY well with these.

He LOVED doing various Do-A-Dot worksheets (which we gave to Grandparents as gifts this year). Definitely see more of those in our future. This one is from Making Learning Fun:

We also did various parts and pieces from Nativity and Christmas Tot packs at 1+1+1=1 and the Christmas pack at Confessions of a Homeschooler. Go on over and check them out! Great resources.

We also had a Christmas themed sensory bin that I forgot to get a picture of. It had silver tinsel, plastic red and green ornaments, sparkly red and green pom poms, a dozen Christmas erasers in pairs, and jingle bells. He hated it. LOL! We will try again in January.
I was feeling bad that we didn't get all of the things done that I wanted to do during December, but in posting it I think we did enough.

Not sure what my issue was, be we didn't get the tree up until the 23rd. I am not sure we even HAD one last year. Here is a picture to prove we made it and Santa visited:

This Christmas marked the FIRST Christmas that Christopher was able to go to midnight mass at our church. (Father frowns on pictures in church). We decided to try it because the "weather was frightful" and we knew there wouldn't be too many people there. We also heard rumors that the incense was going to be kept at a minimum. Plus, Aunt T was singing and Christopher and Big Chris have never heard her sing! He did VERY well. We sat away from the rest of the congregation (all 20 of em). He absolutely LOVED the organ music. Guess Mommy will have to get busy with some lessons soon.

Soon it was Christmas morning, and what would Christmas be without Occupational Therapy - eerrrr, I mean presents! LOL!

More gifts at Gama & Papa's House!

Looking out our front door Christmas Day. We didn't get the snow that the East Coast did, but it was pretty snow.
Since this is so long, our next post will be our goals. Thanks for sticking with us!

Hugs!~

Steph

HAPPY 7th BIRTHDAY SWEET BOY!!!!!

2010-12-19T02:03:00.001-06:00

What a difference a year makes!

For those of you who have joined us since last December, you can read how it all started HERE. I am not going to go over it again here. :) I want to spend this time looking back at the past year...

Mommy and Daddy are sooooooo proud of you! You have worked so hard this year, and you can really tell. You rocked your leg surgery. Since your legs have been straightened, you have taken off - literally. You are working so hard in PT and OT every week. You are SUCH a good traveler, and we spend countless hours in the car. You have figured out that you like to show off. Part of your M.O. in therapy is to see how many people in the gym you can get to cheer for each accomplishment. It works every time. :)

You have been able to get into a swimming pool for the first time ever this year - and LOVED it. I see swimming lessons in your future.

You are communicating more with a combination of words, signs, pecs, pointing, etc. What ever it takes to get your point across, you get there. To help with the communication and to prepare you for a device or an IPad, we have an Ipod. There are a few games that you like to play on it, but I think it is hard for you to see or focus on.

You are working hard in school as well. We are still working on numbers. You recognize and help me count 1 thru 10. We are working on number correspondence. We have to figure out some way for you to color. With those backwards thumbs, it is hard for you to do a pincher grasp or to use scissors. We have tabletop push scissors and are working on our scissor skills as well. You like your books, but have to be in the mood for them. You like your movies - especially Spout channel (Barney, Kipper the Dog, Sesame Street) - better. You have mastered the concepts of Bigger and Smaller, and Matching - choosing from two flashcards, the one that matches. We will be working more on those, adding more cards or objects to the mix. You have discovered trucks, and love to yell at the semis as we pass them on the highway.

You are more interested in your world. You like to look out the window in the van and will often stay awake ALL the way to Chicago just to watch out the window.

We are working on your sensory issues, and hope to move forward with some vision therapy this year.

This has been our first year that we can really say Christopher has not had any serious illnesses! That has made a world of difference. We believe that we finally have a team of the right people in the right places. Now that he is healthier, we are really starting where most folks would be at around age 2.

For this coming year, we hope:

1. That you continue to stay healthy. Maybe gain a little weight?
2. That you continue to work hard in PT and OT. We can really see it paying off. You will be getting AFO's and a stander soon. We can't wait to see how they help you progress!
3. That you will continue to work on your communication. I can't wait to hear what is running around in that little head of yours. :)
4. That you continue to work hard in your schooling. Every time I make a goal, you blow it out of the water and I have to re-work things. We will go as far as we can go. All I ask is that you try your best.

We love you Little Man!!!! We hope the next year is as fruitful as this one has been and more.

Here are some pictures for your enjoyment.

First day home from the Hospital - Dec. 23, 2003

Christopher's Cowpokes - Buddy Walk - Oct. 2010

Happy Birthday Little Man!!! 12-2010

What?!? How can I be 7 years old already???

Thanksgiving Sensory Bin

2010-11-05T06:38:00.001-05:00

I have been reading about sensory bins for awhile now. Homeschooling Moms who have it MUCH more together than I, take many different items and put them in a box to let their children explore. I am not entirely sure if it is a Montessori thing or a Charlotte Mason thing, but I know it is great for somebody with sensory issues.

You can put just about anything into your bin, and are only limited by your imagination and funds. :) Some people put beans, or things to make them smell good in theirs. Since this is our first attempt, I decided that we were going to keep it pretty mild. Plus, since Christopher doesn't eat by mouth I was not too keen on putting smell-good spices into the bin that he has never been exposed too. We try to keep our anaphylactic reactions to a minimum.

First, we put in a couple of bags of silk autumn leaves that we acquired at places like Michael's, Dollar Tree, and Wal-Mart. These had lots of neat shapes and bright colors to identify including yellow, orange, red, and purple.

Next we added some decidedly fake looking gourds and pumpkins that I bought from the Dollar Tree. We will keep an eye out for more realistic looking ones for next year. These are also Styrofoam, so if there was a meltdown there would be minimal damage if they went flying!

We next added a package of various sized, fall colored pom poms. The small ones are some of the smallest pom-poms I have ever seen! Again, another opportunity for color recognition with green, brown, tan/gold, and burgundy. Also an introduction to size with large, medium, and small. Heavy vs. light, and also hard vs. soft.

Last but not least, we included his Pilgrim, Native American, and pumpkin figures from this Little People Thanksgiving Set. We also put in a couple of turkey figures from his Little People farm set. This kid LOVES his Little People! (If your little one loves the Little People too, you can go to the website and watch movies, print off coloring pages, play games, listen to stories, etc.)

So when we put it all together, it looked like this:

Tonight was the first time Christopher was given the bin. I was concerned that he would not put his hands in it. He does have trouble with reaching out to touch things - not sure if it is a sensory issue or a motor planning issue. Probably a combination of both. Truth be told, his Dad has the same issue - that is another post. I was pleasantly surprised that once I put his hands into the bin, he explored on his own.

He is very much into "putting things in" or "putting things on (a shelf)". It was interesting that he did not take the items out and try to put them over the side of the bin. I was also surprised that he was able to "play" in the bin and look at what he was doing at the same time. Most of the time when introduced to something new, he can either listen or look. He cannot do both at the same time until he is familiar with the object, television show, etc. It is also very hard for him to look and feel at the same time. He did both with this bin, although I do think the pom-poms are maybe too soft. Either he didn't like them and ignored them or the texture was so soft that they did not give enough feedback for him to tell he had them in his hands.

For the next couple of days, I am just going to leave it out next to the toys that he plays with regularly. I'll sit him up and let him explore it in a more structured way at least a couple of times a day. I will probably be adding things as we go through the month. We have LOTS of Thanksgiving themed materials this month. I believe the sensory bin will be getting a work out. Hopefully, he still looks like this at the end of the month!

Now if I could just get a picture that doesn't make him look like I have drugged him for the shot! Ha!Ha!

Keep an eye out for our next post! ~

Happy Fall!

Steph

Halloween 2010 at OneTrueMedia.com

2010-11-01T03:34:00.001-05:00

Make an on-line slideshow at www.OneTrueMedia.com

My Montage 10/8/10 at OneTrueMedia.com

2010-10-08T19:35:00.001-05:00

Christopher LIVE!

Photo and video editing at www.OneTrueMedia.com

New stuff!!!

2010-09-29T01:15:00.000-05:00

The last couple days have been busy, busy, busy!

Monday, we went to Peoria to meet with a new doctor......a new Pulmonary doctor to replace the crazy one that we currently have. He came highly recommended by a friend. She said that he was very thourough.....that is a euphamism for "pack a lunch". LOL! However, he IS very thourough. He is now our new pulmonologist! Yeah! I would much rather have a pulmo at the same hospital that our cardilogist is at.

Unfortunately, I think I got a case of food poisoning. I have NOT been that sick in a L-O-N-G time. Not sure what that was, but when I got up at 4:30 Tuesday I felt like a new person. Whew!

Good thing because we were off to Chicago (LaRabida) for physical therapy today. We LOVE our PT up there! She is .....lively. Christopher grumped the whole time, but I think it was more because he wasn't running the show. LOL! Mike, our friendly DME guy was there to take measurements for Christopher's new stander! He measures right in between two sizes, so we are going to have to figure out if we can swing the larger one to make it last longer. Can't wait to get this!

Christopher did really well. We were there for 2 hours. He is now bending his knees at a 90 degree angle and putting weight on them. We have found that he has one leg longer than the other. He is also showing signs of scoliosis. For some reason, he twists to the left (from the waist up) when he sits or stands. We don't know if this is some sort of stem thing or if he is compensating for something. We have lots of work to do. He is going to be getting measured for AFO's to help distribute weight evenly on his feet. He will also be getting arch support and a lift in one shoe.

We also found out that at his next appointment, Christopher will get to try out a tryke! Apparently, there is a couple who modifies Radio Flyer Trykes for free. Christopher is on the list to get one of the trykes. Yeah! All falling in to place to get him outside more next year!

That is about it for now.

Hugs!

Steph

The Lowdown...

2010-09-26T03:19:00.001-05:00

Sorry for our lack in posts lately. There really hasn't been too much that is "blog-worthy" lately.

Christopher did get his casts off on Sept 9. It wasn't as bad as we anticipated. His legs actually looked like he had just come back from surgery. I was surprised that the incisions hadn't healed. They have since healed nicely. I'll post some pictures of that below.

He had another seizure a couple of days before the casts came off. Another bizarre one. These last few almost look like how you will sometimes jerk just as you are falling asleep. Except he does it hundreds of times. In between "jerks" he will normally look like he is trying to come out of it but will whine. This time, it was obvious that he was totally conscious! He would grab our arm and hold on like he was trying to stop the jerking. He would try to say "Mama" or "Dada" and would usually get cut off by another jerk. He was trying to sign "All done". Those aren't things that he would/could do if he was in "seizure fog". It lasted for about 15 minutes. Then just stopped - no easing out of it. He will normally go right into a deep sleep after a seizure....this one he sat straight up and wanted to hug and kiss both of us. He laughed and clapped his hands, then signed "Eat!" and grabbed for his feeding pump.

Ever since that seizure, he has been a talking fool! He used to babble all of the time "dadadad" etc. After he was really sick about 2 years ago, he never started it again. Now it is back! He is suddenly gaining a little weight (no ribs showing). He LOVES to count. He can count to "tree" (three) by himself. He is counting to ten with me. He counts to three, I say four and five, he says "sic" and tries to say seven. He is also trying to say eight, he lets me do nine and he will do ten. Then we clap. :)

The house STILL has not sold. We are getting a little desperate here. We have had one showing the entire month of September. We dropped it $10,000. I am not sure what else to do. We do NOT want to be here for winter. Almost everything we own is at the other house already. We just can't move in yet, or we will have to pay rent. We can't afford both.

Big Chris started a new rotation at work. Not many of the people out there like this rotation, but we LOVE it! He is working 6 a.m. to 6 p.m.. One week he will work 2 days, then have 2 days off, then work the weekend (Friday, Sat, Sun). The next week, he is OFF 2 days, works 2 days, then has a 3 day weekend. Sooooo much easier to plan appointments around. He doesn't know it yet, but he is going to start participating in homeschooling. Christopher sometimes does much better when Dad asks him to do things. We are going to be taking advantage of that.

Otherwise, we are just running, running, running all over the state. Now that the casts have come off, Christopher is going to PT at least once a week in Chicago. He is doing REALLY well, and their goal is to get him to be able to at least climb 6 to 8 stairs (the amount that we have in our new house). They are going to order us a new stander that is properly fitted for him, and hopefully I can post about ordering a walker soon. We will see.

This next week we go to Peoria on Monday to meet a new (to us) Pulmonologist. If we like him, we are dropping pulmo in Milwaukee. I would feel more comfortable with a pulmo in Peoria anyway, as that is where his cardiologist is. On Tuesday, we go back to Chicago for PT again. Wednesday we have a home visit for our waiver program. She needs to see our new house. We are waiting to hear about an adventure that will be a separate blog post..... If that doesn't happen, we will be hitting the paint brushes at the new house on Big Chris's 3 day weekend.

Here are your pictures!

Before Surgery (Crazy Legs):

After Surgery (Grover Legs):

Casts Off Day/ Straight Legs!:

Hugs!

Steph

Whole Lotta Nothin.....

2010-09-05T15:45:00.002-05:00

It seems like we have been busy but still not doing a whole lot around here.

Christopher is officially on the 5 day count-down to casts off. The first 2 weeks or so were pretty rough. The casts seemed to make him REALLY hot. He is used to flipping around in bed and couldn't really do that. His heart rate was also sky high - we never really did figure out if that was bacause he was in pain, mad, or if the casts were putting pressure on the blood vessles in his legs making it a little harder for his heart to pump. Now he has figured out how to swing them around and even crawl some!

Selling the house has gone S.L.O.W.L.Y!!!!!! We have dropped the price $10,000 and are having another open house at the end of this week. Our original Real Estate Agent suddenly retired right be fore Christopher's surgery, so we ended up with another from the same company. This week, the company has gone through some sort of re-organization, so everything was pretty much at a stand still. I told him I want this house sold and out of here by the first of November. Every time we move it is -5 degrees out - not this time.

We still have things to do at our new house - paint the bedroom, paint the hall and living room, and prime and paint some cabinets on the lower level. Those we will have to use KILZ on first and I want to get that done before cold weather sets in so that we can leave the windows open because of the fumes. This will go much faster once Christopher has his casts off and it is easier to take him back and forth. So far, we have painted Christopher's room, the Den and the bathroom. Then it is just amatter of getting things put away - UGH!

Since we have moved so many things over to the other house already, it has been a challenge on the homeschool front. I finally just decided that this would be our "vacation". We usually don't take time off except for holidays and hospital stays where he is REALLY sick. He forgets too much if we don't drill on it every day. We have still been working on animal names, counting to 10, sigining and other communication issues. I have noticed that he has been babbling more recently. He used to all of the time "dadadadad" etc. He is doing that again. He also says "Chi - ken" "Turkey" "Cow" "un (one)" "koo or two (two)" "tree (three)" "Sic (Six)" "Ten" "Get" "Kids" "Papa" "Go" and "tan-ku (Thank You)".

Our big goal for homeschool this year is learning the alphabet. We have started flashcards several times a day. I have soooooo much stuff for alphabet work - but it is all at the other house. I decided that we were going to go ahead and start calendar time - as soon as I have it all made up. I will post pics when it is finished. I will do a larger post on homeschool goals soon.

Otherwise, I have been spending entirely too much time on FB. I am glad that I have been able to connect with some old friends and make some new ones. However, I think I am going to be limiting my time there. Especially when we get to the new house and start in seriously with homeschooling. I have also left a few of my on-line file sharing groups. I seriously have sooooo much stuff - for all ages. I have 5 different e-mail addresses and they ALL have over 6000 messages in them! Once I get all of those dealt with and the files down loaded, I will feel much better. I am also blogging at Living With Special Needs. When we get to the other house, I want to start cooking, gardening, and doing more than just laundry, diapers, and meds. :)

For our family, we added a page to the top of the blog with links for wishlists for Christopher's birthday and Christmas. There are lots of things there and at all prices. We haven't found any "one" thing that we want for him this year - he has everything! Most of the things I listed are just items that would be nice to have, and serve a dual purpose - school, play, therapy. If you find somethng on the list someplace other than the stores we used, by all means pick it up. We just used those places because they had on-line wishlists.

We are also getting ready for the Buddy Walk! Look for another post in the next day or so with the link to join the Buddy Walk team and/or donate to Christopher's Cowpokes!

Well, that is the lowdown for now! Hope everybody is doing well and enjoying this wonderful weather we are getting in the Midwest. I LOVE FALL! :)

Steph

P.S. Our Buddy L.C. is having surgery to take out her G-button on the 8th!!!!! Yeah L.C.! If you could all say a prayer for an un-eventful surgery and speedy recovery, I am sure her Mom & Dad would thank you!!! :)

A Little Comic Relief....

2010-09-04T05:45:00.000-05:00

I have another post in the works, but this was sent to my by a friend on Facebook. I couldn't pass up the chance to share it here. Have a happy and safe holiday weekend! Enjoy!

Mama's New Gig...

2010-08-17T08:31:00.000-05:00

A couple of weeks ago, I was approached about writting a couple of times a month for another blog. Today was my first post.

This blog is really more than just a blog. There are many great folks who will be contributing. I look forward to learning from, and sharing with them all! :)

If you get a minute, please stop by Living With Special Needs and show us some love!

Thanks!

Steph

How long?

2010-08-12T05:34:00.000-05:00

We are still here....

2010-08-06T03:09:00.001-05:00

Sorry I didn't get anything else updated after surgery....Between computer issues and Christopher NOT being happy in his casts...it has been a long two weeks!

He came out of surgery OK. Woke up immediately and was mad/panicked ??? Part of the issue was the casts. The docs wrapped them VERY high up on his legs so that laying down the casts were cutting into his bottom and um....well, his pelvis in the front. It was even worse when we tried to sit him up, which we wanted to do as soon as possible to keep his lungs clear. They finally ended up cutting them down a bit to a little over mid-thigh. Still within the line of fire if the diaper malfunctions, but much better than they were. :)

It has been hard to keep him comfortable the last two weeks. He was HOT the first week or so - no fever, but his whole body felt like it was on fire. His heart rate while sleeping was between 150 - 170, which is WAY high. Then he would get mad at not being able to move the way he wanted, whew!

He is down on pain meds - he actually did that fairly quickly. I wondered if the high heart rate was because of pain, but it doesn't seem to be. He's just mad! I think the medicine itself is also causing his heart rate to increase. There is also the thought that because the casts go completely up both legs, it is changing the way the blood vessels are reacting.

Otherwise, we have been dealing with crazy house stuff. We dropped the price of the house $7000 this week. We have also been having some trouble with the mortgage company, but I think we are getting that straightened out. I just want OUT! If anybody out there knows of somebody who needs a handicap accessible house that has been completely remodeled - send them our way!!!!

I am also getting my thoughts together about our lessons this year. Last year was a bust. We did school, but ended up following rabbit trails and didn't really stick to our plan. Most of our school stuff is packed away right now, and I am not sure how much we would accomplish anyway - even with a captive audience. I am thinking that we are going to wait to "officially" start school until late September - after the casts come off.

I do know that we are going to be concentrating on our alphabet, numbers 1-5, animals, transportation, various holiday stuff (turkeys, scarecrows, everything Christmas, etc). I would like to get more in to art this year as well. I think art projects are going to help us both with our theme and with sensory issues. It is also good OT work. Following directions and getting a consistent schedule is also going to be a big deal this year.

When we get to the new house, outdoor time is going to be a must. Christopher is like a mole and HATES being outside. We will have to work on this. We have a pool, we are getting a small swing set, and I am already drawing out garden plans. We are moving to a neighborhood that I grew up in, so I hope to be able to start walking again and/or bike rides. It is just hard to do with him around here. I am thinking messy art projects are going to be done outside as well.

One last thing, I have been invited to write a couple of times a month on another blog with a group of people all living with special needs. If anybody has anything they would like to see tackled, leave me a message or shoot me an e-mail! It can be anything, from questions about how you deal with social situations to where to find good information on medical issues, or even how others set up & store all their medical supplies! Pretty much anything goes.....I will post a link when it gets up and running.

Hugs!

Steph

Aftermath....

2010-07-26T22:03:00.000-05:00

So the surgery was finished around 2:00. Christopher then went to recovery. We told the anesthesiologists that he had a high tolerance to sedation. I guess they found out for themselves as he woke up immediately after and was raring to go! LOL!

So far he isn't acting terrible. Of course he is grumpy, with good reason. I think we are handling pain OK. He is getting morphine about every 3 hours. I am not sure if he is trying to move his legs and can't or if his sedation/morphine is still messing with him, but he will fall asleep for about 5 mins then wake up in a panic. They are going to give him some more here soon.
We JUST got him up in his little feeding chair. Looks like we are going to have to have the ortho cut down the tops of his casts so that they don't cut into his privates & abdomen. Dr. Personality - the resident, might not be on board for that. We will see what happens.

(Sorry for the quality of this pic - my phone is dying)
They were talking of the possibility of sending him home tomorrow. I don't think that is going to happen. We want to be back on his home feed regimine for 24 hours, and have a good plan for pain management before we go. He had 3 doses of powerful antibiotics before surgery because he has a heart defect, so I do not want to get 150 miles away and have blow outs running down his casts. YUCK!

Thanks to all for all of the good thoughts and prayers today! We will keep you updated.

Hugs!

Steph

Surgery!!

2010-07-26T11:35:00.001-05:00

11:55 - They just called to say that he went to sleep perfectly & they have him on the vent. He is prepped and they started the first incision as we were speaking to the nurse.

OK. They just took him back a few minutes ago. It will take awhile for anesthesia to do their thing & to get him prepped. Then surgery will be 1 1/2 to 2 hours. They are doing both legs at the same time. We are praying that he does NOT come back with Spica casts on - the ones that go all the way up to the rib cage.

Will update when we receive one. :) I'll add pictures later.

Hugs!

Steph

We're Here!

2010-07-25T20:01:00.000-05:00

Well, we finally made it...We are in Chicago. Surgery is scheduled for 9-ish tomorrow morning. I will update as I can. It has been CRAZY this week!

We had to come up on Thursday for pre-surgery stuff. We also found out that our real estate agent wanted to do an open house today - so the house had to be spotless when we left.

Tuesday, my sister's house was broken in to. They kicked in the back door and trashed the entire house. Most of the stuff that was stolen was my nephew's, including money, camera, & DSI. Who ever did it was watching my sister's house for awhile. ARGH! Although I think my nephew is handling it better than anybody else. :)

So far Christopher is doing well. He had to get an I.V. put in and tried to give the nurses kisses in exchange for forgoing the I.V. Didn't work. LOL! They were really great & were able to get it on the first try! WOOT! Now, we just have to keep him from chewing on it. :(

He is in heaven....All of the rooms here are private and have 64 inch flat screens in them. They also carry Sprout. His is obsessed with the Goodnight show on Sprout...guess what is on for the next 6 hours? :) Oh yeah - and no shortage of girls to flirt with. Ha!Ha!

Oh well, He is in for a rough time of it tomorrow. Let him enjoy himeself now.

Will update when we hear something tomorrow!

Hugs!

Steph

Bummed.....

2010-07-20T19:59:00.001-05:00

I am almost beyond words...Our T21 family has lost another friend and gained another angel today. Warrior Princess/Rock star Kristen lost her 5 time battle with leukemia in her parents arms this morning. If anybody could show how to handle adversity with grace and endurance, it was Kristen, her Mom Polly, & Kristen's entire family. She was loved tremendously - both by her family and friends. The world is a little darker and the heavens a little brighter tonight.

Our love and prayers go out to Kristen's family tonight. I can't imagine what Polly is dealing with right now.

John 3:21: To him who overcomes, I will give the right to sit with me on my throne, just as I overcame and sat down with my Father on his throne.

Hugs!

Stephanie

For our friends.....

2010-07-11T06:24:00.000-05:00

Get out the tissues! Just wanted to share a video that I came across on youtube. This one goes out to all of my Special Needs parents. This video doesn't just represent the race that THIS father & son are running.....we are all running our OWN version. You don't have to physically run an Ironman to understand that is what we, as SN parents are doing everyday. Pay attention to the end! You won't be sorry! Hugs to all. :)

Steph

P.S. We will get back to more regular posting soon. Christopher's surgery is scheduled for July 26th & we just got the house officially up for sale. Lots of stuff coming...:)

Recipe Recap - Sloppy Joes & 'Tater Salad

2010-07-01T10:39:00.000-05:00

I thought I would re-post some recipes that I put up here last year for the 4th of July. I can't believe it has come around again already!!!! I don't think we are doing anything big this year. Not sure if we will even go see the fireworks. We will see how things iron out.

To all of our friends, have a Happy and Safe 4th of July!!!! :)

So, the first recipe is a two part-er. The first part is for a mix that you can use for several different recipes. The recipe comes from this book. Most of the recipes in the book are bulk recipes that then get made into others.

MEAT SAUCE MIX: This yields five, 1 pint servings to be used in other recipes. Larger families might want to only divide in in half or use the whole thing. I use the whole thing for holidays and put the second part in the crock pot instead of a skillet.

4 medium onions, chopped (I use a bag of frozen, pre-chopped onions - saves time)

3 garlic cloves, finely chopped, or 1/2 teaspoon dried minced garlic

2 cups finely chopped celery*

2 to 3 chopped carrots, optional*

5 lbs lean ground beef

5 teaspoons salt

1/2 to 1 teaspoon pepper

3 tablespoons Worcestershire sauce

1 (28 oz) bottle ketchup (I just use store brand or whatever is on sale)

6 drops hot pepper sauce, optional

1 large chopped green pepper, optional* (I also use a bag of frozen pre-chopped peppers if I don't have fresh)

*I put the celery, carrots, fresh green pepper, and fresh onions (if that is what I am using) in a food processor and chop VERY fine. I don't think anybody knows that there are celery and carrots in this recipe!

Spray large skillet (I use a chicken fryer or a dutch oven) with vegetable cooking spray and saute' onions, green peppers celery, carrots, and garlic until onions are golden. Add ground beef and cook until browned. Drain excess fat. Add salt, pepper, Worcestershire sauce, ketchup, and hot pepper sauce. Cover and simmer for 20 minutes, stirring occasionally. Cool

Put into five 2 cup freezer containers, leaving 1/2 inch space at the top. Cut through mixture several times to remove air pockets. Seal and label containers with date and contents. Freeze. Use within 3 months. Makes about 5 pints.

RANCHER'S SLOPPY JOES: This recipe is for using 1 of the 5 servings from above. If using the entire recipe for a crowd, multiply by 5. I will put those measurements in ( ). This recipe is great for busy nights. It can be ready in 10 -20 minutes, depending of if it was thawed ahead of time.

1 pint (5 pints) MEAT SAUCE MIX, thawed

1/4 cup (1 1/4 cup) packed brown sugar or equivalent brown sugar substitute (Splenda)

2 tablespoons (10 tablespoons) white vinegar

1/2 cup (2 1/2 cups) ketchup

1 tablespoon (5 tablespoons) mustard

hamburger buns

In a medium saucepan, combine all ingredients. Mix well, cover and cook over medium heat about 10 minutes, or until heated through. Serve over hamburger buns. Makes 6 servings.

For the entire recipe, I put everything in a crock pot at least 2 hours ahead of serving time. Put on low or medium setting and heat through. Stir occasionally. Serve over hamburger buns. Makes about 30 servings.

The other holiday recipe in our family in potato salad. My Grandma Krauel made the best potato salad. We have this at Christmas time too, with ham. It is best serves as cold as possible. This is another good sized recipe. If making just for a small family, I would at least cut it in half. There would still be enough for leftovers.

GRANDMA KRAUEL'S POTATO SALAD FOR A CROWD:

5 lbs potatoes, large diced

1 dozen hard boiled eggs, diced or sliced

4 stalks celery, sliced

2 medium onions, chopped (I use sweet yellow onions for this - your preference on how
"onion-y" you like it.)

2 tablespoons yellow mustard

2 cups Miracle Whip (do not use mayonnaise, but can use fat free, etc. Miracle Whip)

1/2 cup sweet pickle juice

1/4 cup sugar or equivalent sugar substitute (Splenda)

1 cup thinly sliced sweet pickles - optional

yellow food coloring

Peel, and dice potatoes all about the same size. Put in large dutch oven in cold water with a little salt. Wait until all potatoes are ready before cooking. Boil for about 25 -30 minutes. Start checking potatoes at about 20 minutes. You want a fork to go into them easily, but not to be cooked as you would for mashed potatoes. Those will be too mushy. Drain and cool. Put into large roster or plastic container in fridge.

Rinse pot and add cold water. Add 1 dozen eggs. Cook over medium heat until boiling. Boil for 10 minutes. Turn off the heat and let the pot cool - this way the yolks do not turn green around the outside. If you are in a hurry, you can put the entire pot in the sink and run cold water over all, until all of the eggs are cooled. Once eggs are cool, peel and slice or dice. I use an egg slicer - it makes it much easier. Add to potatoes.

Next add celery, onions, Miracle Whip, pickle juice, mustard, and sweet pickles. Add 1/8 cup sugar or Splenda. Mix well and taste. If the mix seems too bitter, continue adding sugar to taste. If the mixture seems "dry" , try adding Miracle Whip and mustard a couple of tablespoons full at a time, until you reach the right consistency. Add yellow food coloring until salad is a light lemon yellow.

Cover and refrigerate for at least 6 hours. Enjoy!

Hope everybody has a Happy and Safe 4th of July! Feel free to leave your browser open to this page. I put a new playlist at the bottom full of patriotic music. :)

Hugs!

Steph

This should be posted in every school......

2010-06-29T00:12:00.000-05:00

Love him or hate him , he sure hits the nail on the head with this!

Bill Gates recently gave a speech at a High School about 11 things they did not and will not learn in school. He talks about how feel-good, politically correct teachings created a generation of kids with no concept of reality and how this concept set them up for failure in the real world.

Rule 1 : Life is not fair - get used to it!

Rule 2 : The world doesn't care about your self-esteem. The world will expect you to accomplish something BEFORE you feel good about yourself.

Rule 3 : You will NOT make $60,000 a year right out of high school. You won't be a vice-president with a car phone until you earn both.

Rule 4 : If you think your teacher is tough, wait till you get a boss.

Rule 5 : Flipping burgers is not beneath your dignity. Your Grandparents had a different word for burger flipping: they called it opportunity.

Rule 6 : If you mess up, it's not your parents' fault , so don't whine about your mistakes, learn from them.

Rule 7 : Before you were born, your parents weren't as boring as they are now. They got that way from paying your bills, cleaning your clothes and listening to you talk about how cool you thought you were So before you save the rain forest from the parasites of your parent's generation, try delousing the closet in your own room.

Rule 8 : Your school may have done away with winners and losers, but life HAS NOT. In some schools, they have abolished failing grades and they'll give you as MANY TIMES as you want to get the right answer. This doesn't bear the slightest resemblance to ANYTHING in real life.

Rule 9 : Life is not divided into semesters. You don't get summers off and very few employers are interested in helping you FIND YOURSELF. Do that on your own time.

Rule 10 : Television is NOT real life. In real life people actually have to leave the coffee shop and go to jobs.

Rule 11 : Be nice to nerds. Chances are you'll end up working for one.

All the Goings-On....

2010-06-12T01:19:00.001-05:00

Well, we have been jumping through hoops trying to get this surgery scheduled. Long story short, we have a surgery date! It looks like it is going to be July 26th. I am MUCH happier that it will be on a Monday vs a Friday. Not knowing how Christopher is going to respond to this, I feel much better knowing there is a full staff.

Another end result from all of this is that we have dropped another doc in Wisconsin. I am not even going to go into that fiasco, we'll be here all night. We have appointments both in Chicago and Peoria to interview new Pulmo docs. We also got on a waiting list for a new endo doc in Chicago. I am not impressed with the one in Peoria - that is why we left her the last time. That only leaves Genetics and Nephrology (kidney) docs in Milwaukee. We can handle that. We like both of those. We also don't want to completely cut ties, just in case we need to go back for GI issues. Everybody else is either in Chicago or Peoria. Both are only a 6 mile difference in drive for us. We'll take that! :)

Otherwise, we are still putting the finishing touches on the house to get it up for sale. Should be up for sale before the end of the month. Pray for a quick sale (but not too quick - I don't want to have to move during Christopher's surgery. LOL!)

Last, but never least could you please say some prayers for Kristen and her family? Kristen has fought leukemia FOUR TIMES!!!! She just had a bone marrow transplant, and they have just found out that her leukemia is back. Please say a prayer for her family that this transition be as easy and peaceful as possible for Kristen.

Hugs!

Steph

Blog-ortunity!

2010-05-27T02:49:00.000-05:00

Hey folks! For those of you who have your own blogs, Dave at Rolling Around in My Head is hosting the Disability Blog Carnival for the month of June!!!! Stop by and read the instructions here. Leave him a comment with a link to YOUR blog, siting your favorite entry regarding disabilites.

Have fun!

Steph

Mr. Crazy Legs

2010-05-23T02:28:00.002-05:00

This is sort of a continuation of the last post. This past week, we went back to LaRabida to meet with PT/OT and then an appointment with our Orthopedist.

We were on a mission to figure out what to do about Mr. Crazy Legs (see the pictures in the last post). We started out in the big gym, which we normally don't do because of germs. Christopher was having a ball! He was checking out all of the other kids, many of whom were in pain, and I am sure he was thinking "better you than me bud!" :(

Anyway, we spent the better part of 2 hours having pictures of his legs taken in various angles and positions. They wrapped and braced, dislocated and reduced joints...the child quite possibly had almost an entire 100 foot roll of Velcro wrapped around him from the waist down. I didn't get pictures as it took four of us to get and hold everything in the correct alignment.

Then we had our appointment with Dr. Sullivan, our ortho. We were the first appointment of the half day clinic, and he was an hour and 45 minutes late. He was in surgery. He swoops in with his entourage: his nurse, clinic nurse, PT, OT, and a couple of residents. They all take turns examining Christopher, bending his legs into positions that would take serious drugs to be able to pull off with normal people. Christopher was so good! He just laid there playing with his toys letting them bend him like Gumby.

The Verdict:

First the good news: Dr. Sullivan thinks that Christopher will eventually stand on his own, and may even be able to walk short distances. He most certainly will be able to eventually crawl. Standing was my biggest issue. If he can stand, he can help to transfer from his wheelchair to the bed, chair, toilet, etc.

Now the bad news: In order for that to happen, Christopher will need some pretty significant surgery and heavy duty braces, possibly for the rest of his life. The braces I don't mind. I am not terribly excited about another surgery. The fact that this is going to have to happen sooner rather than later doesn't help.

Since our last visit, about 3 weeks ago, Christopher's lower legs have gone from pulling out to a 30 degree angle to about 50 degrees. If we do not get the surgery soon, his legs will be permanently misaligned. Things are moving too fast to even consider doing this with braces or tape. Even 3 weeks ago, they could put his kneecaps back into place with effort. Now, they don't go at all.

The surgery will consist of the doctor cutting or "releasing" the tendons around his knees. He will tighten some and reposition others to stretch them. He will also be repositioning Christopher's kneecaps (patellas) and sewing them into place so that they don't dislocate anymore. Then Christopher will be in casts from hips to toes on both legs for 4 to 6 weeks. Pray for no GI issues or blowouts during this time - that could be disastrous for all! Ha!Ha!

Dr. Sullivan is nervous about this surgery. He is a VERY conservative Ortho surgeon. Surgery is always his last option. We have passed GO and he is collecting our $200+ this time. He made the comment that he is always nervous operating on kids with Down syndrome. He has had a few that have had bad seizures going in to or coming out of anesthesia. So, I pipe up and tell him, "That's OK, he already HAS seizures!"
NOT HELPING!

The result of that is that Christopher's neurologist is going to be there as well. Anesthesia really is one of the most dangerous things for a child with seizures. We meet with the neuro on Tuesday and will have more information after that.

We also discussed with Dr. Sullivan the fact that Christopher was supposed to have the muscle biopsy in Milwaukee soon (on cue - Milwaukee called my cell in the office to schedule surgery!). Dr. Sullivan said that he could do the biopsy if we wanted, but his concern was that Christopher has such a small amount of muscle. The biopsy needs to be the size of a sugar cube. A sample that size would almost sever his quad muscle (your front, upper thigh muscle) in half! For you or I, that would heal and we would recoup. For Christopher, he is concerned that he will NEVER heal and that would mean that there would be no chance of walking and make it very difficult to stand.

So, I am leaning towards not doing the biopsy at all. I am not sure that we will get any answers from it in the first place. I would rather fix his knees right now, and go back in the future if we think it still needs to be done. Maybe by then, we can figure a way for Christopher to build up more muscle. The problem is, we don't know if he CAN make muscle.

The surgery in Milwaukee was also supposed to include a dental exam, a bronch, and an EMG (muscle tests). Originally, Dr. Sullivan was going to try to find somebody to broch Christopher during this surgery for us. I have decided that is too much. We have made an appointment with a new pulmonary doc in Chicago. We will deal with a bronch later. We really like our doctor in Milwaukee, but it is just so far to go. The EMG is a test to see if the messages from the nerves are getting to where they need to be. We WILL be asking our neuro to do this test. We think it is important information, and we are at a point where we need the info to plan our therapy effectively.

So, surgery is tentatively scheduled for June 11, 2010. They will most likely be putting him in the night before the actual surgery to give him prophylactic antibiotics because he is a heart kid. That will allow us to get blood work, chest x-rays, etc done that we would have to do the morning of... Normally, this would be a surgery that they would do a 23 hour hold for. We are not normal. :) We are probably looking at a 4 or 5 day stay, to get Christopher back to baseline and because the surgery will happen on a Friday. I expect he won't want to release him until Monday.

While we LOVE our doctors in Chicago and the hospital, it is a GIANT, expensive pain to stay there. All of the parking garages are owned by the City. The DISCOUNTED parking rate in $33 per night. I am a brave person and grew up in some not so nice areas of town, but even I am not brave enough to jump in my mini-van & cruise the south side of Chicago to stop at Harold's Chicken Shack or Chef Alfredo's for dinner!!! The one cafeteria is 4 buildings away. We will have to pack stuff to take with us. They do have fridges & kitchens on each floor. Still.....pray for a short stay, or we will have to start hocking body parts in order to afford it (We'll start with Big Chris - LOL!).

Well, we will update after our appointment on Tuesday. We should have more information then.

Hugs!

Steph

Tag Team Therapy and Blog Maintenance

2010-04-30T20:31:00.002-05:00

Every four to eight weeks, we pack up a bunch of toys and other paraphernalia and head off to Chicago to La Rabida for Tag Team Therapy! This is a session - usually 2 to 3 hours - of intense Physical, Occupational, and Speech Therapy services. Intense for ALL of us! This is what we did on April 27.

These services are to take the place of what Christopher would normally be getting from the school district. Not just to take the place, but go over and beyond. The school district does not have the time or support to do this type of therapy. La Rabida is primarily a rehab hospital for children. Many of the children there have brain injuries, severe burns, amputations, etc. These therapists have the updated training and experience that school therapists just don't have the chance to get.

So, we take our own toys for two reasons: #1. Our therapy appointment takes place in a room in the therapy department as opposed to the big therapy gym on site. While there are lots of neat pieces of equipment up in the gym, we don't have them at home and we can't control how clean they are. I know they wipe them down, but better be safe than sorry. Christopher cannot be exposed to all of those people. He wears a mask when we go in until we are in the therapy room. #2. We DON'T have all of those neat things at home! We have lots of our own stuff, and these are the things that we use everyday. Christopher takes a long time to warm up to ANY new toy. We have to utilize our time at therapy wisely. We don't have time for him to get used to their version of the same toys we have at home.

Here is a picture of our "toy tote". We love these Ziploc Flexible totes. This is the smaller one. They have a larger one, twice this size, that we use to store seasonal clothes, etc. We try to pick a representation of ALL of the things that we are doing since the last appointment. For example: one set of flashcards, one book, one push button toy, etc.

On the Physical therapy/occupational therapy front, we are having some issues. Not with our therapists, they are wonderful! With Christopher....well with his legs. Christopher has had to over come A LOT in his six years. He has the Down syndrome hypotonia, brain damage, heart and lung issues, and he is considered as Failure to thrive (FTT), so his nutrition has been less than optimal. There is also debate over whether he is missing entire muscle groups, or if he has a metabolic/mitochondrial disorder that effects his ability to make muscle tissue. He is still unable to sit independently, although that is getting better. We will never say never, but there is little possibility that he will walk for long distances on his own. Our goal is to get him the ability to transfer himself from his wheelchair to the bed or toilet, walk across the room, or at least be able to stand.

Back to the crazy legs. With the hypotonia, Christopher has always been able to, and does on purpose, dislocate and reduce (Put back) many of his joints. Drives us nuts, but it is what it is. Well, his kneecaps were no exception. When he would bend his knees, his kneecaps would slide to the outside of the joint. We were continuously putting those darn kneecaps back in to place, but it seemed as if Christopher hurt less if the kneecap dislocated when he bent his knees. Fast forward to today. His kneecaps are now permanently dislocated. See the picture below:

You should be able to see the entire joint is visible and the patella (kneecap) is sticking out on the outside of the joint. The PT and OT believe that part of the problem is the ligament that runs from the hip down the outside of the femur (thigh) and connects to the patella. This is tightening up, while the counterpart ligament on the inside of the leg is stretching. This is causing not only his patella to be permanently relocated to the side of his knee, but it is making it so that it is impossible to completely straighten his legs. The bottom parts of his legs are being pulled out sideways to so that it looks as if he is severely knock kneed. His legs are bent at about a 30 degree angle. See pictures below:

Obviously, we are doing all that we can to correct this as soon as possible and WITHOUT surgery. We have tried taping, splints, etc. Right now, it is too bad to even put him in his stander. So, next appointment the PT/OT with do therapy and brainstorm, then we meet with the Ortho doc. Pic below is with splints on. Notice how they are pulling at the top to the inside. This is because of the knees.

Speech therapy was mostly working on our communication skills. We still hope to get some verbal speech going or at least clear speech for the few words that he has. We are still working towards less aversion, using the muscles in his mouth and neck more, and less tongue thrust.

So after therapy services, we went back to Lincoln Park Zoo. We have been there before, but it was so hot that most of the animals were inside. We decided to try to go again. We were so glad we did! We love LPZ!

As you know, Chicago is known as the Windy City. It was living up to that on Tuesday. Here are a few pictures of Lake Michigan outside La Rabida that day. I have never seen whitecaps the way they were that day! I am sure there are days when they are bigger, but you could have easily surfed that day. :)

Here is a montage of our zoo pictures. Some of the pictures of the inside exhibits are a bit dark. You can see them easier on some computers, so I included them. Christopher really enjoyed the monkeys (the Chimps seemed to like him as well. They followed us around), the meercats, and the fish.

Make an on-line slide show at www.OneTrueMedia.com

I am working hard at getting the pages at the top of the blog updated with links. Please check back often to see if there is something you can use. Leave me a message if you find something you like, something that doesn't work, or if there is something you would like for me to add. Many links fit in more than one sections, so if you think something needs to be listed in more than one place please let me know.

Have a great weekend!

Hugs!

Steph

Playing Catch-up!

2010-04-29T01:44:00.002-05:00

WOW! The last two weeks have been crazy around here. Things have been really up and down.

We are trying to go through things, throw out what we don't need, pack what we don't need right now, and finish up small little things to put our house up for sale. While we are getting rid of a TON of stuff, everything is torn out right now. Our house almost looks worse than when we started!

The last 5 days have been particularly rough - especially in the Down syndrom and Heart kid community. In the last 5 days, we have lost two friends:

First, there is Carly. She was 8 years old and died last Friday. This was totally unexpected and it has sent shock waves through the DS community. So many of us have never met IRL (in real life), but are still close through our blogging and facebook communities. If you would, please say a little prayer for Carly's Mom, Dad (who had to do CPR until the ambulance arrived), and her older brother and sister. If you are so inclined, please stop by Michelle's blog. She has put up a button to donate. On behalf of the DS community, a fund has been established to pay for a wonderful artist named Michael Johnson, who also has DS, to commission a painting of Carly for her family. Any money over and above will be donated to Mott's Children's Heart Center per Carly's family's wishes in her obituary.

Our next friend is a local heart buddy. I have asked for prayers for Ashton before. Sometime on Sunday night or Monday morning, Ashton had a major stroke. He was still on a bypass machine, but was being weaned. He was going to be listed for transplant. Sadly, his family had to take him off of life support on Monday afternoon. He had such a following! I was never able to personally meet Ashton, but I have talked with his Grandmother and Dad. They are both wonderful people. Ashton was a first degree black belt in TaeKwonDo, and attended the same studio as my nephew. He will surely be missed, but we are happy that he is now able to run, and spar, and do all of the things little boys should. A memorial is set for this Saturday, May 1 at Bismark school.

The next person is my friend, Phred from Alaska. We have known each other for years via the internet, but never got to meet. Phred was crazy as a bedbug! If you look up Mountain Man or Hillbilly in the dictionary , it is a sure bet the picture would be Phred. We may not have always seen eye to eye on things, but he was one of those rare birds who knew who he was. He had no trouble expressing his oppinions - wanted or conventional, or not - but he had no trouble with others doing the same, whether you agreed with him or not. Many of those ideas where greatly challenged this past fall when he became a Grandfather. His Grandson was born with both Trisomy 18 and Trisomy 14, plus a translocation. This was a defect that the doctors never thought the baby would survive - even through the pregnancy. So far, he is doing amazingly well! It looks like he is the only recorded person in the U.S. with this particular genetic disorder. On March 25, Phred went to sleep and never fully woke up. He had a massive stroke. His family took him home from the hospital to make him comfortable and he passed away on March 29, 2010. We noticed that he had been missing from our forum and somebody contacted his wife. She forgot to notify his on-line friends. We will miss you Phred!

So now that we are all thouroughly depressed, the results from all of our recent appointments....

Monday, the 19th, we went to the Cardiologist in Peoria. Christopher* had an ECHO. The results were GREAT! Tricuspid regurgitation (or leakage) was minimal. Mitral valve regurge was downgraded from moderate/severe to mild/moderate. No sign of pulmonary hypertension returning, and mild thickening of the septum that was repaired. (His septum is competely patch material - now is growing scar tissue and thickening making it less flexible. For obvious reasons, this is watched VERY carefully). We don't have to return for a year!

Tuesday, the 20th, we went to Wheelchair Clinic at LaRabida in Chicago. We are required to go every 6 months, or it voids the warrenty on the wheelchair. Unfortunately, we don't use his wheelchair that often. He does not sit in it all day, he is not transported in it to school or anywhere else, and it is HEAVY! It takes two of us to lift it into the back of our van. Since my Dad has had colon cancer surgery and hernia surgeries, he ~~can't~~ isn't supposed to lift over 10 lbs. So, Christopher will have this chair for a L-O-N-G time. They had to order a new back for the chair (I think everything is custom made) since he just keeps getting longer instead of gaining weight. We drove to Chicago, went to clinic, and was back home by 12:30 that day! Remember, this hospital is a good 3 hours away, depending on traffic. We didn't mess around that day. Something fired us up because we ended up going to get curtains for 4 rooms in the new house, paint for 5 rooms, rugs for 2 rooms, completely changing the plan for one room in the process, and stopping by a couple furniture stores to look for a few things we need! While at Menards, (after Mommy used Cavi-Wipes to sanitize them) we put Chistopher in a swing that is set up there. We have the same one for him at home, but aren't putting up the set this year because as sure as we do, the house will sell! He really seemed to like it. Here are a few pics.

Friday, the 23rd, we went BACK to Peoria to see the GI doc and the Endocrinologist. Even though the scales indicated that Christopher had lost a pound since his visit to the Cardiologist that Monday, the GI doctor was happy with his overall weight gain of 1 1/2 lbs since October. He added some calorie booster to the formula cocktail and a return visit for 6 months. The Endo doc was underwhelming. I am not sure I am too comfortable with her. I had some questions that I asked her several times and she ended up never answering one of them. Christopher's TSH levels supposedly went up 3 points in 3 weeks, and she sisn't wasnt to repeat the test to make sure what was going on. We have such trouble with Peds. Endo. docs. They just don't seem to want to do much unless your child has diabetes - not something we want to visit thank you.

Well this post in long enough. I will update our trip BACK to Chicago yesterday for tag team therapy services and a trip to the zoo - complete with picutes!

Hugs!

Steph

*OK. So I originally was only going to use "Lil' Man" on the blog as a pseudo security measure. It is too much work and most of you who come here already know who Christopher is anyway! LOL! So, I am going back to using his real name. :)

Busy Week!

2010-04-18T21:29:00.000-05:00

Well, we have a busy, busy week this week. Monday to Peoria for Cardiology appointment, Tuesday to Chicago for Wheelchair Clinic, Wednesday to the dentist for me, and Friday back to Peoria for GI and Endocrinology appointments! Whew!

I will update when I can. Have a great week!

Hugs!

Steph

Things are a changin'....

2010-04-16T06:38:00.000-05:00

Hello all! Just wanted to drop a line to say that I am going to be working on the blog. If you can't see something, I am probably busy editing!

Notice the new page additions at the top. I will be adding to these regularly. I have probably thousands (no joking) of links regarding homeschooling alone! Don't be fooled by the titles. There will probably be something on each page for everyone when I am finished (if ever.....LOL!).

For all of my blog friends, I am having trouble with my comments on others' blogs - only blogspot blogs. I will write a comment and the entire thing disappears! Please know that I am visitng your blogs, even if my comments do not co-operate.

Not much to report right now. Busy week next week with appointments: Monday - Cardiology, Tues - Wheelchair clinic, Fri - GI & Endocrinology. Not too bad unless you consider each of those is 200 miles away. Our van is going to be our best friend!

Have a great weekend!

Hugs!

Steph

Parable of A Pencil

2010-04-14T00:02:00.001-05:00

Thanks Sherry! I received this on one of the Yahoo groups I belong too. Enjoy!

Parable of the Pencil
The Pencil Maker took the pencil aside, just before putting him into the box.

"There are 5 things you need to know," he told the pencil, "Before I send you out into the world. Always remember them and never forget, and you will become the best pencil you can be."

"One: You will be able to do many great things, but only if you allow yourself to be held in Someone's hand."

"Two: You will experience a painful sharpening from time to time, but you'll need it to become a better pencil."

"Three: You will be able to correct any mistakes you might make."

"Four: The most important part of you will always be what's inside."

"And Five: On every surface you are used on, you must leave your mark. No matter what the condition, you must continue to write."

The pencil understood and promised to remember, and went into the box with purpose in its heart.

Now replacing the place of the pencil with you. Always remember them and never forget, and you will become the best person you can be.

One: You will be able to do many great things, but only if you allow yourself to be held in God's hand. And allow other human beings to access you for the many gifts you possess.

Two: You will experience a painful sharpening from time to time, by going through various problems in life, but you'll need it to become a stronger person.

Three: You will be able to correct any mistakes you might make.

Four: The most important part of you will always be what's on the inside.

And Five: On every surface you walk through, you must leave your mark. No matter what the situation, you must continue to do your duties.

Allow this parable on the pencil to encourage you to know that you are a special person and only you can fulfill the purpose to which you were born to accomplish.

Never allow yourself to get discouraged and think that your life is insignificant and cannot make a change.

Unknown Author.

Hugs!

Steph

I FOUND IT!!!!!!

2010-04-11T02:40:00.000-05:00

Following is a video of what the seizures look like that Lil man has been having lately. Now the video is a little scary if you are not used to seeing a child have seizures. Also, in the video, the little girl is coming out of the seizure...In Lil Man's case, he would look like he was "coming out" of the seizure crying, then go back into it again. The last time this went on for almost an hour. These aren't little twitches - when they happen, he goes all the way. :( I hate that I have to find it, but at least we have something to show the docs if it happens again.

Hugs!

Steph

UPDATES

2010-04-10T00:02:00.000-05:00

We have a couple of updates on some of our friends:

First, Our local guy, Ashton. They just transferred him from Peoria, IL to Milwaukee, WI BY AMBULANCE tonight. I can't believe they went that far in an ambulance. I am sure it was an exciting ride. It took two ambulances and an entire team of doctors, nurses, & EMT's went with. He and his entourage arrived safely at Children's Hospital of Wisconsin (Yes - this is our stomping grounds). Docs there are evaluating him tonight and may be doing another surgery on him tomorrow.

A couple of weeks ago, his heart stopped while he was in the gym at school. Luckily the nurse was there, did CPR, and the school had an automatic defibrilator available. It took 3 shocks and 14 mintues to get his heart going again. They flew him to Peoria where he has had 4 open heart surgeries in the last few weeks. He was on ECHMO, and they have been able to discontinue that. However, his left ventricle is not responding as it should. Our wonderful docs in Peoria knew they were at their limits and arranged to transfer him to Herma Heart Center, CHW, Milwaukee. Please keep Ashton, his family, and the docs/nurses in Milwaukee in your prayers.

Next up, our little guy, Malachi. He was officially diagnosed with Moyamoya syndrome. He will need brain surgery. Unfortunately, he also has that nasty metapneumo virus - a cousin to RSV. None of the Neurosurgeons will sedate him to do the Angios and other tests needed before surgery until that virus is gone. Please keep Malachi, Erin, Josh, & Elijah in your prayers too.

As for us, pretty quiet here. Trying to clean up still and get rid of stuff. We have been able to do a lot of "school" this week. I realized I am going to have to re-do all of my lesson plans. Lil Man has blown everything out of the water. Yeah! I think we are going to try for a more structured school day. Right now, we just have fun. He doesn't realize that stacking blocks, or using a pegboard, reading books, or watching a video is all "school".

I am going to adapt Sue Patrick's Workbox System into our homeschool. There are lots of versions out there - almost as many as there are people using it. If I can take away a toy from Lil Man and put it up one day, and he remembers where I put it and points it out the next, he is ready to move up to "real" school. :) I have noticed that he is starting to anticipate his favorite parts of shows that he watches often - like Sesame Street skits, & Kipper the Dog.

Thanks for stopping by. We wil keep you all updated on how things go. :)

Hugs!

Steph

Prayers & Purging

2010-04-05T22:05:00.002-05:00

First, I would like our blog friends to say a prayer for one of our special buddies. You can go Here to follow them. We have been trying to make time to meet IRL, as they live a few hours north of us. Erin posted that Malachi was admitted to the hospital last night with RSV and a major stroke that is affecting one side of his little body. Please pray that they can figure out what is going on and get him on the road to recovery quickly. His brother, Elijah JUST came home from the hospital from his open heart surgery. If you are reading this Erin, we are keeping you Josh, Malachi, and Elijah in our prayers! Hugs!

Outside of that, we have not had much going on around here worth bloggin about! :) Big Chris & I are busy attacking our house - purging, packing, & getting ready to move. We have WAY too much stuff!!!! What isn't good enough to go in to the rummage box is going out on the curb. You would be AMAZED at the crap people will pick up. Even so, I am sure the garbage men hate me right now.

This week we go to the ortho doc on Thursday. We will see what he has to say about those kneecaps. I do hope we can get away with NOT doing surgery to put them back in place. :(

Next week is VERY busy. We go to the Cardiologist in Peoria for our, now yearly, appointment. Going to push for some blood work, as Lil Man has just been "off" lately. I hope it is just allergies. Then Friday, we go back to Peoria again for appointments with both G.I and Endocrinology.

Hope everybody out there is doing well!

Hugs!

Steph~

Happy Heart Day Lil Man!!!!

2010-03-29T05:59:00.002-05:00

UPDATE: Asking for urgent prayers for a local heart buddy. He had some trouble the other day and had open heart surgery tonight. He is currently on ECHMO and will be for at least 5 days. Lil Man's surgeon worked on him. Keeping Ashton and the Norwell family in our prayers; also all of our cardiac friends at St. Francis. Get well soon Bud!

It is unbelievable that six years ago today, Lil Man had his first open heart surgery! Little did we know the roller coaster ride yet to come.

It was origianlly scheduled to happen about a week earlier. We went to the hospital for the Pre-admissions stuff (tour of the ICU, etc) and our surgeon came in and said that they were going to have to put off the surgery for about 3 weeks. My Mom and Dad were with us. Mom had scheduled her classes around this surgery, along with Big Chris' vacation and FMLA leave. While that was a pain, it wasn't the biggest issue. Before I knew it, I blurted out, "He will be dead in 3 weeks. We don't have time to wait."

Our surgeon looked at me like I just grew two heads. He left the little conference room we were in, and was gone for awhile. Meanwhile, Mom and Dad were trying to figure out vacation schedules and school schedules - I remember Mom chastising me for being so blunt with the doc. I really wasn't that interested. :) If you know us, you know that is a weekly conversation. LOL! He FINALLY came back in and said they could get us in in 4 days. That was better than nothing....

At this point, Lil Man was just barely 3 months old. He had already aspirated several times (although we didn't know that yet), had been diagnosed with seizures and pediatric stroke, and his O2 sats would drop to the 30's and 40's several times a day. Due to the nature of his heart defect, we couldn't put O2 on him. If we did, all of his blood would rush to his lungs, bursting the capillaries and drowning him. We had to get his sats up everytime he dropped them WITHOUT O2. Plus, his seizures were not controlled. He was not having the thousands that we started with, but he was still having hundreds a day. The absolute worst time during surgery was going in to and coming out of anesthesia because it could mask severe seizures, and by the time they realized what was going on it would be too late.

His heart defect was classified as a complete AV Canal Defect and a huge PDA. What we didn't realize was the extent of the defect. Originally, we were told that his heart formed perfectly on the outside and failed to form at all on the inside - no chambers, valves, etc. This is still how I describe things to those who have no cardiac experience. The reality was that his heart was lopsided - 1 cm from being considered Hypoplastic Left Heart Syndrome. It was a miracle he lived that long. They had to build a septum in the heart, making the chambers and valves. He had one flap of his tricuspid valve, the mitral valve was non-existant, both his pulmonary and aortic valves only have two flaps instead of three.

Most AV Canal repairs are made a little easier by the fact that there is either already a partial septum (holes in the heart) , or a ridge down the middle of the heart where the septum should have formed. He had neither. The important thing to remember is that the electrical "lines" run down the heart close to where the septum is, or should be. They are invisible to the docs, you know if you have damage because the heart fails to beat or beats irratically. That ridge is a guide that the heart surgeons use to build or repair without hitting the electrical system. They went in blind on Lil Man. We were prepared that he would be dependent on a pacemaker for the rest of his life. We were also prepared that they would end up having to use artificial valves, requiring a lifetime on blood thinners and replacement surgeries to keep up with his growth. That was also the first time we spoke with a transplant coordinator and found out that they don't do transplants on people with Down syndrome - "because they don't like to waste the organs."....ahem.

The last part of the defect was the PDA. All babies have a PDA. This is a small connection between the pulmonary artery and the aorta. The reason this exists is because before a baby is born, there is no need for the blood to circulate through the lungs to pick up oxygen. This is done through the mother's lungs and passed to the baby through the umbilical cord. Nobody is sure what triggers it, but either during the birth or shortly after, the PDA closes on its own. For some babies it doesn't close. It can be closed with meds, by a cath procedure, or an open heart procedure. Most of the time, it is just a matter of snipping the connection. For Lil Man, the pulmonary artery and the aorta were basically fused, instead of just having a little bridge. So both had to be reconstructed as well.

We went home for a few days and returned to Peoria the day before surgery to do the Pre-op stuff. On our tour through the PICU, we met Barb, Jeff, and little Joshua. Josh was a few days old and had his surgery the day before. He was too swollen to close his chest, so we were able to see what things would look like if that happened with Lil Man. It was amazing to see this little baby laying there, on a vent, with his chest wide open covered in basically Saran Wrap. You could see his lungs expanding and his little heart beating away! We had no idea how close we would become to this family...

The next morning - too freaking early - we headed back to the hospital. While in the surgery waiting room, there was a beautiful little girl running around. She was everywhere at once. Her parents noticed us and came over to make over Lil Man. It was then I noticed that the little girl, Princess Tiffany, had Down syndrome. She was there for ear tubes. She had AV Canal repair at 4 months. Her Mom and Dad kept reassuring us that although it would be hard, things would be OK.

Big Chris and I were the only ones allowed back into Pre-Op. Gamma and Papa had to say their goodbyes at the door. After doing the talks with anesthesia, the surgeon, and about 5 different nurses it was time to hand him over. They don't let parents go to the operating room. He was soooo aware of things that morning, which was unusual. We would not see him that aware of anything for at least the next 6 months, or more. We were told there were three outcomes: 1) he would not survive the surgery, 2) he would survive with either brain damage, artificial heart valves, a pacemaker, or all three, or 3) he would come through with flying colors. We prepared for the worst, but prayed for the best.

Then we waited, and waited, and waited. We waited for 11 1/2 hours of actual surgery. It was 14 hours before we could get a brief glimps of him as he and his entourage flew down the hall with more medical equipment than it seemed could physically fit down the hall - they were moving too. It takes a special group of people to coordinate THAT dance without ripping out something or getting tangled or running into a wall or something.

The surgeon came to talk to us about this time. They ushered us to a conference room and it was actually several docs that came in. The first thing out of the surgeon's mouth, with a sheepish look was, "You were right. He had maybe one or two days left." They proceded to tell us how they repaired everything and what to expect. Another doc came in and asked us to sign consent for what, at the time, was an experimental treatment. They were having trouble keeping his O2 levels up. There was already one other kiddo in the PICU on ECHMO (heart lung bypass), so they treated him with Nitric. (not nitrous) It is lighter than oxygen, but it attaches itself to the oxygen molecules and "floats" the oxygen into the lungs. This allows it to go in to parts of the lungs where O2 couldn't squeeze through. What nobody realized was that Lil Man had Pulmonary Hypertension - fixing the PDA likely made it worse.

We FINALLY got to see him 14 hours after we handed him over. The entire room was filled with I.V's an the vent, etc. It was all very scary at first, but you got used to the equipment pretty quick. As I said, there were three other kiddos up there who were pretty sick - one on ECHMO, the other with an open chest., the third a 4 lb baby with gastroscheisis who was born at 1 1/2 pounds. We would get to know ALL of these folks well.

This started our 6 month hospital stay. We learned many lessons, met wonderful people, and made lifelong friends along the way. We are so proud of how far you have come Lil Man! We can't wait to see what comes next.

BTW - I will try to add pictures later - our scanner is acting up. :(

Hugs!

Steph

Speech....

2010-03-27T01:25:00.001-05:00

We have been working A LOT with Lil Man's communication lately. I say communication because, just like everything else in our lives, we use a jumble of different things to help him get his point across. He vary rarely has an issue letting you know when he is frustrated or just not happy with something. :)

We have been taking him to Rehab Institute of Chicago for Augmentative Communication Therapy (Roger Ebert also goes here - same clinic). He has only been twice, but already he is showing soooooo much improvement! The last time we were there, they told us we didn't have to come back for awhile. They have given us a modified PECS system to use with him. He has 4 or 5 laminated sheets hooked together with a ring. On each sheet, there are 8 squares, each with a different picture in them. Some are his favorite toys, one is a kleenex (I'll explain that in a minute), others are action words (watch T.V., throw a ball, etc).

The goal is to go through each square and look for SOME consistent reaction from him. Ideally, he would either sign yes or no, or point to what he wanted. With him though, we don't always get that. If he is overwhelmed, you will be lucky to get eye contact. So, we go through each square and look for a reaction. The Kleenex is purposely put in there to check and see if he is just giving a reaction to get you out of his face. So, if he really wants his toy, but reacts on Kleenex - he gets the Kleenex. It weeds out the behavioral control issues from true commuication skills. Not that behavioural control is not communication in itself. Its a little confusing. Sometimes his behavior is the only thing that he has control of in his world.

I am going to be working on getting some new sheets put together. There are several programs out there for this, but I think it will be easier to take a picture of what we are targeting (specific toy, HIS bed, etc). Obviously, there are some things we can't take pictures of. I have lots of pitures of the signs for those things (i.e. hurt, want, all done, etc) I think I will use those. It will also reinforce his sign usage.

They have commuication devices that do the same thing. When you bush the button/picture, the device "says" what the picutre is. There are several types out there from simple 1 picture ones to 20 picture or more ones. Like these. If you went to the link, you will see they are also very pricey. Our insurance will help cover one device every 5 or 6 years. So we have to anticipate what Lil Man's needs will be 5 or 6 years from now.

The therapists have tried several of these devices with Lil Man. What they didn't realize before we started trying them out, was that Lil Man doesn't like too many toys that aren't push button/feedback toys. He likes lights and music especially. He doesn't seem to care too much for action (like robots, etc). I think it is too hard for him to track. If left to his own devices, he will self stim with most of these toys. Anyway, he mastered all but the 20 picture device in a 30 minute session....ahem.

That means that the next step is an actual computerized device. This will last MUCH longer, is customizable, and also MUCH more expensive. These are the ones we are looking at. They kind of look like a huge iPhone.

We will still be continuing with regular speech therapy. He does have a few words, and those he does have we would like to be clear to others when he says them. I don't know if he will ever be able to eat by mouth. Not so much because he physically can't/won't do it, but because of the reflux. Have to protect those lungs!

One obstacle that we have to overcome is his brain damage. This is an ever present demon with regards to his abilities. On paper and on his MRI's, EEG's, etc, he should be in a persistant vegitative state. He is literally missing AT LEAST half of his brain matter. Beacause the O.B. that I had deleted every...ultrasound...the night he was born, we have no idea what he started with. We don't know if his brain had formed normally and this is mostly stroke damage, or if it formed incorrectly from the get-go and more damage was done from the stroke, crashes, etc. Either way, he has stroke damage, damage from thousands of seizures, damage from poor perfusion, damage from crashing so many times....Lots of damage through out his brain. It is VERY obvious to anybody who meets or examines him that he has "re-wired" himself. There are entire chunks of brain missing that "should" be controlling specific things - i.e. speech, emotion, etc.

He seems to have a full range of emotions - he is not "flat", doesn't have rages, etc. He has normal temper tantrums, but they are few and far between and don't last long. Recognizing others' emotions is a developmental milestone that we haven't reached consistently. He uses about 10 signs consistently. He uses about 10 verbal words consistently, but if he learns a new one he will drop an old one. Every once in awhile he will "parrot" something VERY clearly and may repeat it ten times within an hour. Come back and ask him to say it the next day, and you will never hear it again.

He does comprehend most of what is being said to him. If he didn't, he couldn't give you the "evil eye" and do exactly the opposite of what you are asking! Expressing his wishes without prompting is an issue. I have done a lot of research on speech, reading, and learning patterns of people with Down syndrome. For many, speech "kicks in" AFTER starting to learn to read. We don't know if those typical learning patterns will hold true for him. "Typical" is NOT a word that applies to us very often! :)

This didn't start out as another long post, sorry! We will keep you updated as we progress. We welcome any and all ideas that you would like to pass on to us! Thanks for stopping by!

Hugs!

Steph

World Down Syndrome Day

2010-03-21T00:16:00.003-05:00

Lots has happened since our last post....Lil Man had another series of seizures and was hospitalized. So far, he has not had anymore. Adjusted his meds agan and had a new EEG. Haven't heard the results, but I'm pretty sure that nothing has changed or his neuro would have called us.

Last week, Gamma (a.k.a. my Mom) went in to the ER with trouble breathing. Four days, an angioplasty, two stents, and an appointment with Cardiac Rehab later - she is home.

Sunday, March 21 (3-21) is World Down Syndrome Day. People all over the world will be celebrating our wonderful kiddos with a little something extra! If you are so inclined, people all over the world will be releasing blue and yellow balloons at 4 p.m. your local time....

In the spirit of World Down Syndrome Day, I thought I would post some links for your enjoyment. These came from a variety of resources including our local DSN newsletters:

The first few are for the locals - local being in Illinois. Feel free to check them out even if you are not local:

HOISDA - Self Advocate Advisory Board: The Heart of Illinois Down Syndrome Association Board of Directors approved the bylaws to provide for a Self-Advocate Advisory Board. The purpose of the Advisory Board is to provide guidance and assistance to the Board of Directors to promote awarenes of Down syndrome issues and empower those with Down syndrome to direct their own lives and achieve maximum independence. The Self-Advocate Advisory Board accomplishes these directives by : Educating, Communicating, Sharing information and resources, Networking, Mentoring, Promoting respect and dignity, and Encouraging each other. Please contact a Board Member if you are interested in an appointment to the Advisory Board. http://www.hoisda.org/

The HEAT Program: The Help Empower And Teach Program provides an opportunity for students to promote positive lifestyle choices among their peers. They will focus on sexuality education and dating for the HOISDA group. A seperate program will be offered simultaneously for parents. The date of the presentation throught he Wellness Program at Bradley University is Thursday, April 15 from 7:00 to 8:00 p.m. at Bradley University. You can learn more information about the HEAT program at http://www.Bradley.edu/campusorg/peered/

Inclusive Practices in Early Childhood: Sponsored by ProjectCHOICES - April 30, 2010, Grizzley Jack's Grand Bear Lodge, 2643 N. IL Route 178, Utica, IL 61373, Cost: $30 Professional, $10 Family Members, Questions : 630-629-0551

Family Matters Parent Training and Information Center (FMPTIC): 4Th Annual Family Conference: Resources and Inspriation for Adult Caregivers and Family Members of Children with Disabilites, Saturday, May 1, 2010 - For additional information contact: Deb Einhorn, Family Matters, 1-866-436-7842 x116 , deinhorn@fmptic.org or Mary Smith, STARnet Regions I & III , 217-742-5252, mk-smith@wiu.edu

HOISDA /Advocates for Access Workshops - FMPTIC:
3-29-10 Removing Barriers and Building Bridges with Your School and Being Your Child's Advocate

4-26-10 Solving the Empowerment Puzzle for Youth with Disabilites

6-7-10 FAT City: (Fear, Anxiety, and Tension) Understanding Learning Disabilites

These workshops will be taught by the staff of FMPTIC. All sessions are FREE and a light meal will be provided. Register at http://www.fmptic.org/ Time and Location: 5:30 - 8:30 p.m. at Advocates for Access CIL, 4450 N. Prospect Rd., Ste C8, Peoria Heights, IL 61616

Here is a little something for everyone! Enjoy!

Self-Care: Why Parents of Children with Disabilites Must Nurture Themselves: From Disaboom: http://tinyurl.com/ygxny6e

The "Other Child" with Special Needs: Understanding Siblings: From Disaboom: http://tinyurl.com/yhqobwe

Positive Discipline for Children with Special Needs: From Disaboom: http://www.tinyurl.com/ygstpz8

Canadian Down Syndrome Society: Lots of great information here http://www.cdss.ca/blog/information/general-parent-information/     Also a great section on Teaching Children with Down syndrome http://www.cdss.ca/information/general-parent-information/teaching-children-with-down-syndrome-pdf.html

Think Beyond the Label: Think Beyond the Label is committed to making the business case for employing people with disabilites. They are a partnership of health and human service agencies, and employment agencies with federal grants, coming together to build a uniform national infrastructure and approach that connects business to qualified candidates with disabilites. The goal is simple: to raise awareness tha thiring people with disabilities makes good business sense. Employes with disabilites have unique, competitively relevant knowledge and perspectives about work processes, bringing different perspectives to meeting work requirements and goals succesfully. Hiring someone who " thinks outside the box" might be thinking too small when there's an oppoetunity to hire someone who lives outside the box. http://www.thinkbeyondthelabel.com/

Bike-On America: Offers adaptive trikes, bicycles, and handcycles. Visit their site at http://www.bike-on.com/

Documenting Disparities in Obesity and Disability: The recent FOCUS Technical Brief presents NIDRR-funded research highlighting the deparities inobesity experienced by youth and adults with disabilites. Authors James H. Rimmer, PhD; Edward Wang, PhD; Kiyoshi Yamaki, PhD; and Brianne Davis, MPH conducted the research for the Disability and Rehabilitation Research Project (DRRP) "Reducing Obesity and Obesity-Related Secondary Conditions in Adolescents with Disabilites" (H133A060066), Center on Health Promotion for Persons with Disabilites, University of Illinois at Chicago.
Youth with Autism were 2.2 and 1.8 times more likely to be obese and overweight, while youth with Down syndrome were 3 times more likely to be obese and overweight compared with youth without disabilites.
The research shows that overweight and obese youth with cognitivie disabilites (Autism, Down syndrome, intellectual disability) had a significantly higher prevalence of high blood cholesterol, early maturation, and diabetes than youth with healthy weight. The report can be found at: http://www.ncddr.org/webcasts/webcast21.html

Buddy Cruise: Buddy Cruise is a unique conference for families of people with Down syndrome. This year it is being held onboard Royal Caribbean's Monarch of the Seas. They set sail July 19, 2010. Time is running out to reserve your cabin for Buddy Cruise 2010! At this time there are a limited remaining that will hold more than 2 guests. Call 1-877-BDY-CRUZ option #3 to reserve yours today. (other cabin options available) Once your cabin is confirmed, don't forget to register online at http://www.buddycruise.com/    They have started to post sessions and events on our website, check often for updates. They ahave just confirmed Chris Burke from "Life Goes On". They are thrilled that he and his band mates, Joe and John , will be joining.

Take the Initiative - TTI at Western Illinois University:WIU has applied for a grant for a three phase integrated program to give individual with Down syndrome for the opportunity to be employable college students. This program will allow students to take full advantage of all that a university campus offers, such as learning in and out of the classroom, access to technology, campus recreation programs, performing arts, preparing for a job and above all, a chance to realize their full and often underestimated potential.

Early Childhood Inclusion Training Resources: SpecialQuests's Preschool Inclusion Series videos and training sessions explore several aspects of including pre-school age children who have disabilities in programs and settings with their typically developing peers. http://www.tinyurl.com/yc939nt

IEP Checklist App for iPhone: Did you know there is a newly developed Individualized Education Program (IEP) Checklist iPhone application? The IEP is an individualized program designed to support the educational needs of school aged students with disabilites. This new IEP app helps parents of students with special needs become better-informed advocates by making IEP information easier to access. The IEP app is offered free of charge and is downloadable at iTunes.

Down Syndrome Education International: They are launching a series of online events presenting the current research activities of DSEI and their partners. The live events are free to access online and by telephone for families, professionals, and scientists worldwide.
Over the past , developmental and educational research has increased what is known about the learning difficulties experienced by people with Down syndrome. THis research has improvedteaching techniques and transformed education for many thousands of young people with Down syndrome today. However, much remains to do. Many improtant questions remain unanswered and many specific interventions have not been sufficiently evaluated.
Their series of online events will present our current research activites and discuss how they are working to answer critical questions about development and education for our children with Down syndrome. http://blogs.downsed.org/downsed/2010/02/down-syndrome-research-free-webinars.html

QR Pharma Receives US Patent to Treat Down syndrome: Radnor, Pa. - QA Pharma Inc., a developer of novel ddrugs to treat Alzheimer's disease (AD), announced that it was issued a U.S. Patent No 7,625,942 a "Method of Treating Down syndrome" by the U.S. Patent and Trademark Office. The '942 patent covers use of Posiphen and analogs to treat cognitive impairments associated with Down syndrome (DS). This patent valuably expands upon the original Posiphen and analog patent that claims composition of matter and use of compounds to lower amyloid-precursor protein (APP) and thereby treat dementia and Alzheimer's disease. (Aricept?)

USF studies show link among Alzheimer's disease, Down syndrome, and artherosclerosis: Nearly 20 years ago Huntington Potter kicked up a storm of controversy with the idea that Down syndrome and Alheimer's were the same disease. Now the evidence is in: He was right!

And that is not all. Down syndrome, atery-clogging cardiovascular disease, and possibly even diabetes, appear to share a common disease mechanism with Alzheimer's disease. Dr. Potter and colleagues at the Florida Alzheimer's Disease Research Center, USF Health Byrd Alzheimer's Institutes, recently reported.

Full article: http://hscweb3.hsc.usf.edu/health/now/?p=9843

The studies' published papers can be found at:   http://health.usf.edu/nocms/publicaffairs/now/pdfs/PLoS1_Abisambra_Potter_1_1_10.pdf

http://health.usf.edu/nocms/publicaffairs/now/pdfs/MBC_Granic_Potter_Trisomy21_12_23_09.pdf

Hugs!

Steph

Update

2010-03-12T15:57:00.000-06:00

OK - I just spoke with the Executive Director of the National Down Syndrome Congress - the guy sounds like Ned Flanders, but was obviously PO'd. They are getting flack from all directions - which is unfortunate. I know they didn't intentionally put the images out there for others to take and use, but they also didn't protect their site as well as it should have been either. They are looking into having to register to even see the gallery from now on.

He did say that he was surprized by the number of people who DID NOT want the posters taken down - that they wanted to be "in the faces" of those who are doing this. I understand that, but it probably wasn't any of the people who had their children's image stolen. Some of those posters were filthy. The one with my son was not as bad as the others, BUT some FREAK has a picture of my son on his computer now!

This thread has come down, but these whack jobs tend to pop up again and again. The ED of NDSC made a comment that I thought was funny - he said that these people probably didn't get out of their parents' basement too often. LOL!

He also said that there was volunteers from almost every state. They are working with the Attny General and several lawfirms, including one in the state of the site administrator. They were able to get screen shots of all of the postings and somebody joined and got screen shots of the member info for all of the poeple who posted there. There is currently a cyber-crimes investigation firm (did anybody know they HAD these?) tracking down information on all posters. He said that some sort of legal action needs to happen but they weren't sure what it would be. They are trying to figure out murky laws in different states.

Will keep you all updated. Thanks so much for the support!

More Alike, Part II

2010-03-12T01:07:00.000-06:00

In the last post, I listed posters and asked you to go vote for our kiddos. Unfortunately, some sick individuals have taken it upon themselves to copy our kids posters and photoshop them with disgusting, filthy titles. Lil Man's was one that was stolen. I am currently working with the NDSC, the site administrator, and if neccessary law enforcement to deal with the situation. In the mean time, I have pulled Lil Man's poster from the running. Normally, I would not let this interfear with our lives, but some of the things posted are gross and threatening. I will NOT allow his image to be used for that type of thing.

I worried about this type of thing happening when I started this blog. Luckily, the blog itself has not been targeted. I have the link to the site where this is happening, but I am not going to post it here for two reasons: #1. I don't want these freaks to find our blog if it is not on their radar already, #2. I don't want them to get any more traffic. You can e-mail me directly or contact me on FB if you want the direct link. If you do, please send e-mails to the site administrator regarding this crap.

For now, while you are out cruising the information superhighway, keep an eye out for unauthorized use of pictures of our kids. These sickos seem to be targeting people with Down syndrome.

Thanks! Hugs!

Steph

More Alike than Different...

2010-03-01T14:19:00.003-06:00

OK folks, it is official....Lil Man has a poster at the More Alike than Different Campaign. Please take a minute and go vote! The top three vote getters will have their posters used for national promotions! Lil Man is number 139. We also have some friends there too!!!!! Click on the posters below and it will take you to the site. Thanks!!!! Here is the link if those should not work http://www.ndsccenter.org/?page_id=1992

Lil Man #139:

Sophia from Rejenerations & a local buddy from Champaign County Down Syndrome Network (look to the side for the link to their blog!) - #56

Addy - another blog friend Heflins link to the right - #11

And our local buddy Joey from Champaign County DSN - #21

We also have Larkin from Larkin's Place (on the Right) and our local Champaign County DSN - #113

And Mayson - #4

Thanks for taking the time to vote!

Hugs!

Steph

Tell it like it is......

2010-02-23T14:24:00.001-06:00

I have to say, when it first came out I was less than enthused about seeing this movie. I couldn't stand Johnnie Knoxville & the whole Jack*$$ movie bit.....but when I found out the Special Olympics had consulted on this film - I finally agreed to watch it. It is undoubetly one of my top ten! If you haven't watched it yet, run, don't walk to get it. Great actors who really show what life is like for people with special needs.... Be sure to stop the player in the sidebar to hear the message.

"Kick in the Gut...."

2010-02-19T06:14:00.001-06:00

By now I am sure you have all heard Sarah Palin's reaction to the Family Guy show. If not, you can read it Here.... I am not going to post a link, but if you feel so inclined, you can go to the Fox website and watch the entire episode online. Now read the response by the woman who played the character Here and Here.- and the full email response Here.

For those who are confused by my joy at her interview, let me say this - the episode of the Family Guy was, IMHO both rude, and empowering at the same time. The Stewie song was a little much, but way to go for potraying a person with DS who went out on a regular date, etc! In fact, I am almost more offended on how the brother is portrayed than the girl with DS....almost.

We lament the fact that people with disabilites are far too often portrayed as either the butt of a joke, or a tragic existance, or like a pet needing somebody else to care for and make decisions about....then when the opoortunity arrises where somebody with a disability it portrayed as somebody who can think for themselves, go out on dates with "typical" people, hell, even poke fun at others.....we swoop in convinced that the message was one of discrimination and that the people involved HAD to not have known what they were getting in to.....that they were somehow manipulated into taking such a stand!That they are incapable of thinking for themselves.

For the most part, the jabs that Palin is up in arms over were NOT about DS, they were NOT about Trig - they were about Palin - Not TRIG - Sarah! Would it have been different if the actor/character involved did not have Down syndrome? Probably. This would have never made a blip on the screen if it was a "typical" actress saying that her mother was Gov. of Alaska. PALIN twisted it in to something else - then used it as an opportunity to speak for a group of people who she apparently deems too precious to stand up for themselves - therin lies the problem...

People with disabilities don't need people to speak FOR them - they need people to listen TO them when they speak! Big difference, and one that is fluid and individual. While some people with disabilites will probably always need advocates, they also need to learn to BE an advocate. They need empowerment and the opportunity to advocate for themselves - they need enough respect to allow thier message to be heard, and the opportunity to present it - in short, they need to be treated as people first. People with different likes and dislikes, abilites, hobbies, religions, races, and politial party affiliations. People who are CAPABLE of letting you know their needs, wishes, hopes, and dreams - if only YOU have the courage to listen.

Sarah Palin decided that she would put herself out there as a "Disability Advocate", yet when given ample opportunity to stand up for people with Disabilities - she falls flat on her face.....Boy, she comes out swinging when she hears that somebody in the opposite political party has used the "R" word, but let somebody in her OWN party do it - one who has a National Radio Audience - and it is satire - a joke. If you are going to be an advocate - you are either going to BE one or not. The "R" word is no less offensive coming from my enenmy as it is from a family member!!! Do you think that Trig is going to go to school one day and check voter registration cards before he decides if he is going to be upset at being called the "R" word? Doubt it. Do you think he is going to appreciate being trotted out as the issue of the day every time Palin wants to attack somebody and can't figure out anything else to do it over? Doubt it.

That whole situation typifies the attitude that Americans have towards people with disabilites, "Oh, I didn't mean it like THAT....Oh, it was a joke!" Guess what? I don't care how much money you make, what your job is, who your family is if you use the "R" word - you will get schooled! Some more politely than others, but make no mistake, it will happen.

Guess what else? When/IF Lil Man gets to the point where he can do it himeself - HE will do it!

A big part of our jobs as parents is to prepare our children to go out and be able to take care of themselves in the big, bad world. Whether that be typic or special needs, the goal is still the same. The journey may be just be different. We do them no favors by allowing them to use their disability as an excuse for not doing all they are capable of....for example: just because Lil Man has had a rough time of it so far, doesn't mean he gets free rein to act like a spoiled brat....If he can throw his toys down the hallway, there is no reason he can't throw them in the toybox at the end of the day. Just because he held still during an x-ray, doesn't mean that he should expect a gift for doing so. If somebody or something is hurting him, doesn't mean he needs to lay there and take it until we figure it out.

Sure there are going to be disappointments, hurt feelings, chances lost - but those are all things that typical children need to experience as well. I am not saying NEVER protect your child, just don't enable them to be dependent on you or somebody else for any more than they need to. If we put our special needs children in a bubble - never allow them to get hurt feelings, never allow them to speak for themselves, never teach them to take care of themselves to the best of their abilites - then we are handicapping them come than whatever disability it is that they have. They will NEVER figure out how to speak for themselves. They will NEVER appreciate being happy if nothing bad ever happens! And we, as parents, will NEVER get to appreciate the wonderful people our children have the potential of being. We will never get to beam with pride that first time our child can speak up for themselves and remind somebody to speak TO them, not over them...

As for us, we have a long way to go to get there. I am not fully sure where "There" is or if we are capable of doing it. All I know is that I will do everything in my power to give Lil Man the opportunities he needs to grow - it is up to him after that......

Hugs!

Steph

Please Vote! :)

2010-02-18T05:53:00.000-06:00

Please go and vote for the Down syndrome Awareness design for NASCAR! Thanks!
You can only vote once per day..........Click HERE

Thanks!!!!

Steph

Thinking of you today......

2010-02-14T06:11:00.000-06:00

Three years ago, our family went through that dreaded transition from Early Intervention to Early Childhood/Pre-K that many families of childrens with special needs have to endure. This is your initiation into the world of IEP's, FAPE, No Child Left Behind, inclusion, and the difference between "appropriate" and "best"......Terrified yet?

We had absolutlely SUPER EI therapists, some of which we are friends with to this day (love ya Amy!). Honestly, we were spoiled by good people before we made it to the school system. I grew up in this school district, as did my parents. One thing that happens is that people remember you as a 15 year old ~~angel~~ as opposed to the Mom of a special needs child. We had a lot to overcome. :)

One thing was that on paper, Lil Man is a lot more scary than he is in person. That was an issue, as was the fact that it took people a while to understand that he was capable of a lot more than what he tested as. They just don't take Mom's word for it. wink.....wink.

Well once we got our IEP straightened out, they sent out the teacher to our house - 1 to 3 times a week. That was when we met her.......I knew the minute she walked in that ~~I was~~ we were going to love her. She took one look at Lil Man and said, "What's this?!?   I am going to have to go back and re-do all of my goals and lesson plans!"

Her name was Ms. Bobbett, Cynthia. She was born on Valentines Day in 1953, on the south side of Chicago. Her Dad died at the age of 31 leaving his wife and TEN kids to carry on...yes, I said ten. The next year, Ms. Bobbett's Grandmother died and her Mom took in her four brothers and sisters. So, by the age of 32, her Mom was raising 14 children in the projects on the south side of Chicago!!!!! Ms. Bobbett once told me that her Mom required three things of the family.....the ONLY things they were to concentrate on were God, the family, and their educations....in that order. Most of the 14 graduated college.

At 17, Ms. Bobbett traveled to Liberia, Africa with Sargent Shriver. That was the beginnings of both the Peace Corps and Head Start! They made the cover of magazines - Jet (?) I think. While in Africa, Ms. Bobbett contracted TB (tuberculosis) and ended up spending the next two years in a TB sanitorium and losing a lung to the disease. She didn't dwell on it, but did tell me once that she always made a big deal of holidays because she only got to see her Mom through glass for two Christmases.

She started her career on the south side (58th & Cottage Grove for the locals) of Chicago at the first Jewish private school, respite, therapy, & social facility for for Special Needs children and their families. It sounded neat. They provided schools and therapy, but also social events (think Boys & Girls Club) and 24 hr. respite care. We always got a chuckle about the fact that she was the only African American ,unapologetically Christian, teacher in a rich Jewish school on the south side of Chicago during some of the most turbulent times in history! She didn't talk about that school a lot, but I have a feeling there was never a dull moment there. Unfortunately, it is no longer there. :( Eventually, she made her way here and we are so thankful that she did.

There are lots of great school teachers, and I firmly believe that they don't get paid what they should. I think many times they are stuck in the middle between parents and the districts and it leads to conflict and burn-out. I believe that anybody who knew Ms. Bobbett would tell you that she set the bar high when it came to "her kids."

While all of this was going on, we were in negotiations with the district. It came down to most of their parents don't know or can't educate themselves on the ins and outs of Special Ed. They didn't know what to do with a parent who knew the rules and called them out when they didn't do something right. I think they were also afraid that I would pass on my knowledge to other special needs parents, and THEY would start asking for things that the disctrict should be doing all along.

We had many discussions about doing right, and expectations when it came to Lil Man - for his education, behaviour, etc. She reinforced what I had been thinking all along. She really encouraged me to homeschool Lil Man. The plan was that I was going to pull him out to homeschool him when he reached the "regular" Kindergarten level (she was Pre-K). It also helped to have somebody else in here that Lil Man had to learn to take direction from. And if you knew Ms. Bobbett, it was best to take direction. LOL!    We both firmly believed that special needs or not, if you can figure out that throwing a fit will get you something, you can learn the meaning of "No!" (Mean Mommy)

So on May 22, 2008, Ms. Bobbett was here for the last day of the regular school year. We were to have a little break and then do summer school. Lil Man was doing really well that day. I think he knew that she didn't feel well. She seemed a little off, but she said she just had a little headache and thought she was getting an ear infection. She said that her throat "itched" - like an allergy attack. Before she left that day, she said she was looking forward to the break. She was just tired. I convinced her to let me take her blood pressure before she left. She had high blood pressure and was doing well at getting it down and keeping it under control. I remember taking her BP three times that day because it was almost low! She laughed about that and said she was going to get some fried chicken if it was that low. LOL!

She sang the "rainbow song" that is on the playlist with Lil Man. They always started and ended with that song. She got ready to leave and was talking about going to an award ceremony for her Grandson. Then she gave both Lil Man and myself a HUGE hug. We always gave hugs, but this was different....fierce. She was going out the door and turned to say, "I just love you guys. I am so thankful that we met. I love you! See you in a week!." and she was gone.

She was supposed to call me the next day(Friday) by lunch time (early dismissal for summer break) to let me know the schedule for summer school. She didn't call - which was weird. I called her room and got the answering machine. I called later and got the secretary, I think, who acted really weird. Finally on Saturday, one of our school therapists called me to find out if I had heard anything. Ummmm, about what?

She broke down and told me that Ms. Bobbett had a stroke on the way home - we think from our house. She was in the hospital. She passed away the next day, with her kids and family by her side.

That summer was rough on Lil Man, and us. But we knew what had happened. How do you explain that to him? He was REALLY depressed. To this day, we cannot say "Let's do school (work)" because he looks for her to come through the door. sigh.....

So today, we celebrate our friendship. We miss you friend....our two hour phone conversations, our "conferences", bouncing ideas off of you, hearing about your kids, grandkids, and "the sisters". Your signature exclaimations of "Go Jesus!", laughing about doing yoga & diets. We know you are in a better place, and we will all be together again someday.

For those who knew her, take some time out today to get a red balloon. We all knew that was her favorite color and that she LOVED balloons. Send one off to her today with love.

Hugs!

Steph, Big Chris, and Lil Man

We "Heart" You!!!!

2010-02-10T04:14:00.002-06:00

For those who do not know, February is National Heart Health Month. The week of February 7 through 14 is Congenital Heart Defect Awareness Week. This is something close to our hearts - pun intended.

For those who have joined us recently, Lil Man was born with a congenital heart defect called Complete Atrioventricular Canal Defect. There are many variations of this defect. Some will have a hole in between the two Atrium of the heart (ASD) or between the Ventricals (VSD), or some combination. True to form, Lil Man had his own variation.

In the picture below, you will see a normal heart on the left and a type of AV Canal on the right. In his case, Lil Man was also missing the rest of the septum between the ventricals in the picture (the wall between the chambers), he only had half of one valve, and only two lobes (as opposed to three) on both his Pulmonary and Aortic valves. His heart was also lopsided. It formed more on one side than it did on the other. He was 1mm from being considered having Hypoplastic Left Heart Syndrome (See the second picutre).

Modern medicine is absolutely amazing. We had two outstanding Cardiac surgeons, Dr. Randal Fortuna and Dr. Geiss, who rebuilt Lil Man's heart. They created the Mitral and Tricuspid Valves, and a 4 chambered heart. All of this on a heart the not much bigger than a grape, sewing on tissue the consistency of wet tissue paper. His first open heart surgery was almost 14 hours. I have no idea how they do that everyday, but we are sure thankful that they do!

**Click on the titles above the pictures below, and it will take you to the American Heart page to explain more.**

Complete AV Canal Defect:

Hypoplastic Left Heart Syndrome:

When Lil Man was born, we had no idea what was in store for us. We had no diagnosis of anything before he was born. I want to say a few words to those who may have just found out that your child has a heart defect, Down syndrome, or any other diagnosis. You have every right to feel terrified right now. You have a right to grieve the child that you thought you were going to have. BUT you also have a responsiblity to your child. The minute they were conceived, you agreed (whether you knew it or not), to do what is in the best interest of your child. That means worrying, grieving, and EDUCATING yourself. Right now, you are worried about what the future may hold for your child - all parents do, but yours is more intense. That paralyzing fear of the the unknown can rob you of enjoying the rest of your pregnancy or the birth of your baby. Remember, they are a baby first.

The absolute best thing you can do for your baby is to find out everything you can about their diagnosis. Ask questions, write them down. Get over being afraid and intimidated by doctors. They are people just like you. Many times, being an educated parent earns you more brownie points with the docs. They treat you as part of the decision making team, as opposed to somebody they have to report to. That is as it should be. Much of the fear you are experiencing is of the unknown. As soon as you educate yourself, many times you will find things a little less so. This will also allow you to be able to make better decisions for your child when you need to.

Moving on....since I am a homeschool Mom and the geeky Aunt who always gives the educational gifts (My nephew is terrified to come over ever since I informed him that I found a website where I can print off 15,000 worksheets on different subjects! He is convinced I will make him do every one! LOL!), I have included links to several heart organizations, heart facts, and lesson plan links. There are some neat ones with video lessons , coloring pages, & more. I tried to include all ages, but some things are a little over the heads of children 1 grade and younger. Enjoy!

*Every year, an estimated 40,000 babies in the United States are born with some form of congenital heart defect.

*More than 1 million children and adults in the United States are living with a congenital heart defect and/or childhood onset heart disease. This number is expected to increase by 5% per year due to better diagnostic techniques.

*Congentical Heart Defects are the most frequent birth defect, and unfortunately, also the leading cause of birth-defect related deaths.

*Depending on what studies you look at, between 40 and 60 % of children with Down syndrome have some sort of congentical heart defect.

Lesson Plans & Links:

American Heart Association

The Congential Heart Information Network

The Organization for Understanding Children's Hearts - T.O.U.C.H - this is the local heart group for people who have had OHS or treatment in the Peoria, IL area.

Animated map of the human heart. This site also has links to open heart surgery.

Elementary Lesson plans on the Circulatory System

Functions and Structure of the Cardiovascular System - Lesson Plans for Grades 5 - 7

Lesson Plans, Link, and Resources on the Cardiovascular System

Free Anatomy and Physiology Videos, Lectures, and Classes

Second Grade Curriculum Resources

Kidinfo - Your Guide to the Human Body

Free Cardiovascular Unit Study and Notebooking Pages - A Montossori type Unit Study

American Heart Association Lesson Ideas and Activites

Thanks for stopping by. Please leave us a comment.

Hugs!

Steph

Liane Kupferberg Carter: The R Word

2010-02-08T21:14:00.000-06:00

Liane Kupferberg Carter: The R Word

Couldn't Have Said it Better...or Nicer

2010-02-06T17:11:00.000-06:00

Thank you Mr. Johnson!

Hugs!

Steph

Heart Buddies

2010-02-04T20:53:00.000-06:00

If you were not aware of it before now, February is American Heart Month. I will do another post on that later. Right now, I am again asking for prayers for some of our heart buddies:

Zip, Zip, Hooray!

Zippy is doing great today! He has a little junk in his chest that will require some coughing to get it up, but hopefully he can get some good drugs to help with the pain. Otherwise, he is really doing outstanding after OHS.

Princess Kaitlyn:

They don't have a blog, but we have met IRL (in real life). These are some local friends. Big Chris has known the family since Kaitlyn was born and had her first OHS in Peoria. Lil Man shares his Cardiologist with her. They are a super nice family. Kaitlyn is not too far out from a heart transplant. Tonight, she is back in the hospital in Chicago. She has pneumonia and RSV. Yes, she is a little old for RSV, but she has it just the same. Because of the anti-rejection meds, he immune system is very low. This is how she got the sickies. Please pray for a quick recovery and no rejection. Thanks!

Sweet Jaxson:

So far, Jaxson is holding his own. Resting his tired little body, and letting the meds know out the nasties. Continued prayers for a quick recovery and strength for his Mommy, Daddy, and brothers.

Thanks so much for stopping by. Will get back to regular posting topics ASAP! :)

Hugs!

Steph

Prayers Please....

2010-02-03T06:00:00.003-06:00

For our two warrior buddies.....Zippy is getting his heart repaired today, and Jaxson is fighting a nasty bug...... please click on their names underneath the photos to go to their blogs.

ZIPPY

JAXSON

Love, prayers, & hugs to all!

Steph

Semper Gumby......

2010-02-02T11:32:00.001-06:00

Well, things didn't turn out quite like we thought yesterday. It was a long day, to be sure.....just not the one we had planned.

We took off, nearly on time, yesterday. We were a little past Bloomington (about 1 1/2 hours) , when they called us to cancel and rechedule our appointment. So, we go to Wisconsin on the 22nd now. :( Meanwhile, we had to figure out where to do a U - ey on the highway, and head back home. We were back home by 8 a.m. and decided to catch up on some sleep.

A couple of hours later, we were up and around.....well, most of us were. Big Chris, apparently did something to his back somewhere along the way. So, we packed up Lil Man and dropped him at Gamma & Papa's, & headed back to Champaign to take Big Chris to the E.R. That was the fastest E.R. visit in history! We were in an out including a shot of torridol, paperwork, etc within 30 mins! Wish they could all be that easy.

We dropped off Big Chris' script at the pharmacy and had some time to kill before it was ready. We never get to Champaign by ourselves and had decided that we were going to head over to Barnes and Noble for a little retail therapy....we never made it. We decided to stop at La Z Boy and look at some furniture - get some ideas for the new house. An hour and a half later, we had a couch and two chairs on lay away! LOL! Big Chris decided it was all a plan. I waited until he was flying high on pain meds to take him furniture shopping. He!He! Not really, but it worked!

In other news:

Tomorrow is a BIG day for our friend Zippy and his family! It is Zippy's heart day! If you would, please say some prayers for Zippy, his family, the doctors, and LC & Aunty Whit (no button action LC!).

Click Here to visit Pudge & Zippy's blog!

If you could take some time to say some prayers for our buddy Jaxson and his family, we would appreciate that as well. Jaxson's lungs are sick right now and it looks like it may be a long visit. Please pray for healing for Jaxson and wisdom for the doctors, and strength for Jaxson's Mom, Dad, and brothers.

Click Here to go visit Jaxson.

Hugs!

Steph

Meeting a New Doctor...

2010-01-31T13:45:00.000-06:00

Tomorrow, we head off to Milwaukee to meet with a new doctor. Hopefully, this is one that we won't have to keep around for very long. He is the surgeon who is going to do the muscle biopsy on Lil Man.

The muscle biopsy is used to test for several diseases/disorders, including Muscular Distrophy. As I have stated before, the doctors think there is "something else" going on other than DS. We are at a point in our search for "something else" that we are eliminating diagnosis now. This is pretty much the last thing that they can test for.

My understanding is that they take the biopsy, freeze it and prep it for slides. Then it goes to a genetics committee, where they study it to see if/which version of MD or mito disease he has/ may have. Because of insurance, they can only do one test, for one type of MD at a time. There are over 200 different kinds. So, this may be a years long process. One that we think is more of a rule out, than in.

What we think is REALLY going on, is a cumulative effect of all of the insults to his brain over the years. When you look at the list, it really isn't rocket science (to my way of thinking) that this is what is going on. The kid has had a stroke, 1000's of seizures, heart defect that caused low profusion to his brain. He had aspirated just about every time he was fed up to the age of 7 months - to the point that he basically drown and had to be put on the vent over a dozen times. Until his first open heart surgery, his O2 levels would drop into the 30's several times a day. That alone surely caused some damage. Then there is the nutrition thing - does he not absorb nutrients because of brain damage or is his brain not getting enough nutrients because of malabsorption?

He is a mystery wrapped in a riddle. I am seriously considering getting a T-shirt for him, with "We have never seen this before" printed on it to wear to doctor's appointments. LOL!

So, the next big hurdle is making sure that they can get enough of a biopsy to be useful, and to not have to go back and do it again. The poor kid has NO muscle mass. They will probably have to biopsy multiple places instead of just one. I just hope they don't have to cut on both arms and legs to get what they need.

When this surgery is scheduled, we also have to co-ordinate a bronchoscopy (look down his trachea into his lungs), EGD (look down his esophogus into his stomach), colonoscopy - 'nuff said, and the dentist. There will also be a test, while he is sedated, called an EMG. It is a test where they put probes under the skin, into the muscles, and run electrical current through the probes to see how/if the nerves in his muscles respond. He has never had one of these before, so I am interested to see exactly what the results are.

He seems to be able to move his arms and legs, just maybe not in the same ways we do. At this point, if it gets the job done, we are happy with it.

So, we are ready for a very long day tomorrow. We will have to leave the house by about 4 a.m. to make an 11 a.m. appointment. Hope everyone has a great day.

One more thing, if you could say some prayers today for our buddy Jaxson. He has been admitted to the hospital with something similar to RSV and pneumonia.

Hugs to all!

Steph

Let's talk food.....

2010-01-28T19:06:00.000-06:00

I have a confession...well, a few....For about 15 years, I have been a part of a community - mostly on-line - of really great folks. For me, it started with gardening....and reading. I am a reader. I research everything I am interested in. So, eventually I made it to this group. There are several out there in the www world. Just like regular communities, we have people from all different religions, races, ages, political backgrounds, and socio-economic groups. The difference is, we have all made an agreement that we can discuss things without attacking, and can agree to disagree in some cases. The friends I have made there are ones that I am sure I will have for the rest of my life - even if we never get to meet IRL. The reason this is a "confession" is because these are people that many would classify as the "Tinfoil Hat" group... It is scary how many of the wacked out theories that people on the group are shot down for, have recently come true! :)

So what does this have to do with anything?

Did you see Oprah on Wednesday? Personally, I like Oprah. But it always cracks me up how by the time she does a show on a topic, it is something that the people in our group have been talking about for YEARS! The show was about food, specifically our diets and how food is grown, processed, etc in America. You should go check it out here.

So you want the cliff notes version? I'll try. Basically, there are several issues with food, here in America:
#1. We are one of the wealthiest nations in the world, with one of the highest obesity rates, the highest number of people going hungry, and the highest level of governmental interference (read manipulation) in our food supply.
#2. Our children and future generations are paying the price for our disconnect with where and how our food gets to out table.
#3. In, I think, the 1960's or 70's, Americans spent 18% of their income on food and about 7% on healthcare. Today, Americans spend 9% of their incomes on food and about 20% on healthcare!!!!

The long and the short of it is, that we have gotten away from growing and cooking our own food. partially because of government subsidies of corn, etc, we eat more and more and more processed foods every year. Our animals are doing the same. It is cheaper to go to McDonalds and buy a couple of double cheeseburgers than it is to go to the grocery and buy the ingredients to make a salad. Next time you go grocery shopping, just look down the aisles of the store. How many of the things in the grocery store are things that your great grandparents would recognize as food?

I know that most of you out there are busy, busy , busy. This isn't something that I want you to think I am browbeating you in to. Quite honestly, between big Chris and myself, if we took to eating the way we really should be Little Debbies and the Diet Coke brand would probably collapse. LOL! But, we can all do better. You all have a say in how food is handled in America by using your purchasing power.

This is something that you have to decide for yourself and your family. For us, we are going to start slow and ease into things....for some they may go whole hog, so to speak, and go completely Vegan/organic, etc. For many, I assume, they will fall somewhere in between. It comes down to a lifestyle and what you are willing to accept or ready to do for you and your children.

I will probably be doing some more posts on some easy gardening ideas. Please leave a comment if there is something in particular you would like to see. I am going to list some of my favorite books, magazines, and website to get you started. Click on the titles to take you to the links. Enjoy!

I'll start with a list of books/authors. Just click on the title of the book to take you to a link to read more about it:

Michael Pollan:
*He is really one of the most vocal people out there, and one of the most down to earth. He has a real passion for food and where & how it is raised/processed. He explains things in plain English without terrifying you.

In Defense of Food: An Eaters Manifesto: A good explination of how low-fat has made us fat. If you only read one book, this is it..

The Omnivore's Delimma: A Natural History of Four Meals: Do you know where your corn dog has been?

Joel Salatin:
**I absolutely LOVE Joel Salatin! He practices what he preaches - no questions. While most of his books look like they are geared toward farmers or those wanting to farm, they really explain the ins and outs of industrial farming, the restrictions placed on small family farmers who want to sell locally, and why you should care. I also love his theories about a child's place in a family business and a parent's responsibilites to teach their children how to take on responsiblity.

Holy Cows and Hog Heaven: The Food Buyer's Guide to Farm Friendly Food: "has one overriding objective: encourage every food buyer to embrace the notion that menus are a conscious decision, creating the next generation's world one bite at a time.

Everything I Want to do is Illegal: War Stories From the Local Food Front: Excellent explainations of why it is so hard to find local food suppliers and why you want to.

Family Friendly Farm: If nothing else, read this book for a great example on how to raise your children in a way that you can work with them later. LOL! Seriously, this is a great book on the dynamics of family in a "family" business - even if that business is regular day to day life!

You Can Farm: You CAN do it!

There are aslo several other books of his - just look him up on Amazon or the library and see if they interest you. :)

Barbara Kingsolver:
*You might recognize her books. Great writer.

Animal, Vegetable, Miracle: A Year of Food Life: I don't know if I am brave enough to take on this experiment, but it is really great to read about it. The recipes in this book are worth the price! SOOOO Yummy!

The Poisonwood Bible: Has nothing to do with any of this - it is just one of my all time favorite books! it is about a Missionary family in Africa.

Magazines:

Backwoods Home Magazine: Be sure to check out all of the articles. There is a forum, and Jackie Clay's blog is a must see. She is THE GURU when it comes to gardening, cooking, canning, and raising animals. Some of the political issues may be turn-offs for some, but just ignore what you don't agree with. The gardening and recipes are worth the visit.

Back Home Magazine: Not as "flashy" as BWH, but another great magazine with all kinds of crafts, gardening tips, recipes, etc.

Mother Earth News: Hardcore homesteaders and back to the landers believe that MEN has "sold-out" That may be, but I still enjoy the articles, again, about the gardening, recipes, crafts, history, etc. The website is a wealth of information. I do believe there is a searchable database of all of their acticles and projects from the 1970's on.

Countryside Magazine: Not as political, but very similar to BWH (the first mag listed). Pretty much written by its subscribers. These are people who are walking the walk. :) If nothing else, stop by and read the article by our good friend Suzy Lowry Geno on running a farm store! Great job Suzy!

Grit: Yep - This one is still around. Has a lot of history in it as well.

Hobby Farm and Hobby Farm Home: Another glossy magazine, but has great acticles on gardening and cooking - especially Hobby Farm Home.

Websites:

In addition to the ones above, here are some websites to check out in your spare time...

Slow Food International

Slow Food U.S.A

Eatwild

Eating Fresh Publications

Chef's Collaborative

Enjoy! Hope you find something you like!

Hugs!

Steph

It Begins....

2010-01-25T19:56:00.000-06:00

We have to travel to Chicago tomorrow for Lil Man to start therapy, so of course there has to be a Winter Weather Advisory out! Ha!Ha! We wouldn't have it any other way. Really, the snow doesn't bother me so much. It is the wind.

This will be the first session of tag team therapy. We will see what they come up with for our assignments for the month. We are scheduled to go up every 4 to 6 weeks, have PT, OT, and Speech therapy and get "assignments" to work on until the next appointment. He has changed some since the eval at the beginning of November, so I expect they will be getting to know him again tomorrow. We all have a general idea of where we are going and what we want.

Since I don't have much to say about anything going on around here, I thought I would put in some info that I have been collecting from various sources including our newletters from the Heart of Illinois Down Syndrom Association (HOISDA) and Down Syndrome Network of Champaign County.

The Current State of Health Care For People With Disabilities:

The National Council on Disability (NCD) recently issued a report calling for immediate health care reform for people with disabilites. The report includes a roadmap for eliminating the pervasive barriers to health care for people with disabilites. The complete repot can be downloaded in PDF at:

http://www.ncd.gov/newsroom/publications/2009/pdf/HealthCare.pdf

What Can You Do?

This is the centerpiece of the Campaign for Disability Employment, which seeks to promote positive employment outcomes for people with disabilites. Go to: http://www.whatyoucandocampaign.org/

Case for Incusion:

The United Cerebral Palsy (UCP) has resleased its annual Case for Inclusion that benchmarks states' actual performance in improving lives for individuals with intellectual and developmental disabilites. Among the findings, there remain 169 large institutions (more than 16 beds) housing 36,175 Americans. For more information go to:

http://www.nextsteps.peatc.org/newsmanager/news_article.cgi?news_id=17&no_stats_record=1

Just in time for the annual R-word campaign, Campaign to Change attitudes About Disabilites:

http://www.creaturecomforts.org/

Scoop Group Online Resource:

Disability Scoop offers and online discussion group where parents, self-advocates, and friends of people with disabilites can ask for advice, advocate for their causes and share ideas. http://www.disabilityscoop.com/forum/

They also have a video which explains the IEP process: http://www.disabilityscoop.com/2009/16/video-iep-english/3672

I have more that I will list later. Have a great day!

Hugs!

Steph

Thanks Gamma & Papa!

2010-01-21T05:59:00.001-06:00

A couple of months ago, I came across a really neat chair that I thought would be great for homeschooling. It is durable, wipe-able, and sturdy. It adjusts, reclines, and can turn from a high chair into a seperate chair and desk. It also has a 5 point harness, and lots of padding. :)

It helps that during his PT/OT eval a few months ago, the therapists suggested that we get a chair that would allow him to bend his knees and place his feet on the floor better. Up to now, we had been using a chair like this:

It is a GREAT feeding chair. We have only been able to find them on e-bay and in Special Needs Therapy catalogs since Lil Man was a baby and we initially decided not to buy it at Wal-mart for $14. There are pictures of him in his in older posts about his birthday & Christmas. (While looking for a picture tonight, I noted there are more places bringing it back. If you are looking for a good chair for therapy that is lightweight and portable and wipes down well - this is it. We even take it to the hospital with us!)

So, come Christmas time, Gamma and Papa came through and bought Lil Man his own school desk and chair. This is the first time we have been able to get it together and get him in it. He seems to like it pretty well! It is on the straight up setting, but can recline back pretty far. To turn into a high chair, the table turns over and the chair attaches to it. It has a really nice pommel in the middle too (between his legs so that he doesn't come flying out). That is good, because unfortunately, the straps are a little short. I guess they don't plan on children this big still needing to be strapped in. We rigged it up so that the straps kind of work. Otherwise, we LOVE this chair! Thanks Gamma & Papa!

How to Help Part II

2010-01-16T22:49:00.001-06:00

After reading some comments today on some other groups, I feel compelled to make another statement here. Many are talking about the President's request to give money not stuff. That is great, but right now there are people out there who don't have two dimes to rub together, but they are clearing out their homes that are being forclosed on, they can surely donate "Stuff" that has accumulated.

Even the many of the "poor" in America do not realize how good they have it. Frankly, with our situation, medical bills, and the fact that I can't work so I can take care of Lil Man, we are considered at or below the poverty line. The fact is, we have medical, clean water, clothes on our backs and our families. That is more than can be said for many in Haiti right now.....honestly, it is more than could be said about many in Haiti BEFORE the earthquake. It was just that nobody paid any attention.

Don't get me wrong, America has issues they need to deal with, but nothing like what is going on down there. A full 80% of the population are below the poverty level - way below. These are people who are immensly thankful for the 12X12 shack put together by scrap in the middle of a garbage dump!

There are an estimated 40,000 homeless children in Haiti - not homeless with the rest of their families - abandoned, orphaned, turned out and on their own to survive. As a bonus, Haiti is one of the largest centers for child trafficers, child slave traders, and child sex trafficing rings. With so many more children who are going to be orphaned, fighting these sick people off will/should be a priority.

As somebody who used to work for some of these non-profits, the way this works is that when you donate money, they buy what is needed and get it where it needs to be. When there is such an overwhelming response, as has happened with Haiti, there will probably be more money than is needed for the initial "crisis" level supplies.  The overage will go back in the general pot. Also, long story-short, the more the non-profits are able to send, the less the Government has to co-ordinate.

At some point, the need for aluminum space blankets and bottled water will have been met and the bigger organizations will , for the most part, pull out to deal with other crisis other places.(I am thinking Red Cross as an example). Once things start coming back on line - i.e. water filtation points, tent cities, etc., the people of Haiti will be left to clean up and rebuild as best they can ....mostly on their own. For a people, who collectively had almost nothing before the quake, rebuilding with less than nothing is going to be next to impossible without outside help. This doesn't even take into account the people who are so traumatized that they can't function - PTSD.

So, that leaves the need for "stuff". How many people do you think would be grateful for that old set of pots & pans, dishes, those skinny jeans that you are probably never going to get in to, your old camping equipment, books, etc.   The very best places to give those things to are church groups with established missions in Haiti.  I know the Catholic churchs, the Baptist church, and many others have missions that they continually send people to. THESE are the places that are going to get those things where they need to be. There is no way, anybody can give enough money to buy the things people need to start over.

As for medical supplies, Doctors without Borders, World Vision, and other groups WILL need those items and get them where they need to be. They do have established, and permanent bases in Haiti.

While this is a HUGE tragedy for the people of Haiti and those who have family and friends there, this could be a giant learning opportunity for your family. Without going in to graphic detail & scaring your kids, this disaster could be used as an opportunity for lessons in charity, compassion, empathy, geography, history, geology, and the biggest IMHO needs vs. wants.

Helping the people of Haiti to get back on their feet again is going to be a marathon, not a sprint. Anything you can do to help ease the suffering, I can guarantee you, is GREATLY appreciated by the people of Haiti and their families. Please help in any way you feel compelled, be it monitarily or donation in kind. Thanks!

How you can help....

2010-01-14T21:46:00.001-06:00

As we posted before, we have some good friends who live and have family in Haiti. We know our friend survived her work building collapsing around her. However, her family has not fared as well. We know that part of the family has perished as they were sitting down for dinner and their house collapsed around them. Some who were not hurt are afraid to go back into their houses for fear of collapse, and many are still missing. The devastation is almost absolute. At the very least, we are asking that you send your prayers out for those who are living in Haiti, the doctors and rescue personnel there and on their way, the injured and the missing. We just found out that most neighborhoods are coming together every night at 10:30 p.m EST for a neightborhood prayer service. Please, take a moment to do the same.

If you are so inclined to do more, there are many organizations who are taking donations of money, clothes, medical supplies, and time. Before you donate, always check out the organization with the Federal Bureau of Investigations or the Better Business Bureau to make sure it is legitimate. Unfortunately, there are people out there who wait for the chance to take advantage...

If you are local to us (East Central Illinois/West Central Indiana), we have the names of several churches taking donations of items who have permanent missionary bases in Haiti. If you worry about your donation making it to where it was intended, these people will make sure it gets there. Please e-mail me at stephani.wyatt@att.net or you can find me on Facebook (Stephanie Wyatt) and I will pass on the information.

To all of our friends who have medically involved children and family members, if you are like us, you have a little stockpile of medical supplies that you either don't use anymore, were the wrong size or models and the companies will not take them back once they are in your home. This goes for formula as well. This is the time to clean out those items that are no longer needed. As long as they are still factory sealed - maybe not full cases or boxes - but the individual item still sealed, here is your chance. If you cannot find a national organization to take those items, try a local church with a missionary. They are usually more than happy to take those items. Their regulations are more relaxed, and I have it from a reliable source that when times are tough, places like Doctors Without Borders get those items from where ever they can find them. If you have any medical equipment, old wheelchairs, walkers, afo's, pulse ox machines, feeding pumps, suction machines, nebulizers, etc they can be used as well.

While not my favorite organization, I have added a button over to the side to donate to the American Red Cross for Haiti. You can also dial 90999 on any cell phone and text "Haiti". That will send a $10 donation to the ARC Haiti fund.

Following are more organizations to donate money, time, etc. Click on the BOLD titles for links to the organizations:
CATHOLIC RELIEF SERVICES: Address and mail checks to: The Archdiocese of Detroit CRS Relief Efforts (4th Floor) 1234 Washington Blvd., Detroit 48226; or call 800-736-3467. ** This is for the Detroit area. I am sure they would take donations from anywhere, but you might want to check your local Catholic Church to see if they have a branch of this service there.

AMERICAN RED CROSS: Go to the Web site by clicking the link at the beginning of this paragraph and find out how to donate and other ways to help, or call 800-REDCROSS.

THE HAITI FOUNDATION AGAINST POVERTY: Nonprofit organization in Grand Rapids that funds an elementary school in Port-au-Prince seeks donations, food and medical supplies to send to Haiti.

REGISTERED NURSE RESPONSE NETWORK: The nation’s largest organization of registered nurses has activated its nationwide disaster relief program to recruit nurse volunteers to provide assistance in Haiti. To sign up, click the link at the beginning of this paragraph.

AMERICARES: 88 Hamilton Avenue, Stamford, Conn. 06902 or call 800-486-4357.

OXFAM AMERICA: 226 Causeway St., 5th Floor, Boston, MA 02114-2206 or call 800-776-9326.

THE SALVATION ARMY: 615 Slaters Lane, P.O. Box 269, Alexandria, VA 22313.

SAVE THE CHILDREN: Haiti Earthquake Children in Emergency Fund, 54 Wilton Road, Westport, Conn. 06880, Or call 800-728-3843.

WORLD VISION: Haiti Earthquake Relief, P.O. Box 9716, Federal Way, Wash. 98063-9716 or call 888-511-6548.

DOCTORS WITHOUT BORDERS USA: 333 7th Avenue, 2nd Floor, New York, NY 10001-5004 or call 888-392-0392.

INTERNATIONAL ORTHODOX CHRISTIAN CHARITIES: P.O. Box 630225, Baltimore, Md. 21263-0225. Or call 877-803-4622.

U.S. FUND FOR UNICEF: 125 Maiden Lane, New York, N.Y. 10038 or call 800-367-5437.

CURRCLICK: Go here to donate in small amounts - $5 or $10. Currclick will match donations.

MERCY CORPS: Dept. W, P.O. Box 2669, Portland, Ore., 97208-2669 or call 888-256-1900.

Most of these links were found at the Detroit Free Press Newspaper.

For those who can, thank you in advance for your time and donations. For anybody else, prayers are never turned away. Thank you!

Hugs!

Stephanie

In the Beginning....

2010-01-13T09:10:00.002-06:00

*** I want to pre-empt our post. I am asking you all to pray for the people of Haiti. We have friends there - one who narrowly escaped with her life. She was on the 3rd floor of her office building when it collapsed. She escaped by sliding down the rubble. She knows of at least two co-workers who have died. We also have friends there doing missionary work - mostly with children with heart defects. Their hotel has collapsed, the hospital has collapsed, they are trying to make their way to the airport, as they were all seperated. We have other friends who we think are in the mountains - hopefully not as affected.

If you have family there, you can get information by calling 1-888-407-4747.

If you would like to donate to the relief effort, Wyclif Jean has started a relief group http://www.yele.org/ If you go there and can't connect, keep trying. It has been overwhelmed.

Thank you *****

In the beginning of your journey with your child, everything is new and overwhelming. This is doubly so when you get some sort of diagnosis that you weren't expecting. How you react to your babies' diagnosis depends largely on your personality, faith, to some extent your self esteem, and many more factors.

I met a friend on Facebook the other day. A Mom who has WAY more general experience than I, but is at the beginning of her journey with her beautiful little girl, who happens to have Down syndrome. As I was typing up a couple of e-mails to her about our experiences and what we do to keep our heads on straight, I thought these would make some good blog topics. Don't run away yet. These ideas are not just for those who have children with DS. On the contrary, take our ideas and run with them if you have any medically involved child, or just many typical children to keep track of! :)

When our son was born, we had no idea what we were getting in to. I had enough of a medical background to be dangerous, so I knew a little of what was going on. But not nearly enough. We are still tyring to perfect our system, but I hope this will give you a starting point. This is going to seem like a lot of information, but if you get it together little by little and keep it in one place - you won't have to think about trying to gather all of this stuff when things are going crazy around you.

One other note: In our case, we travel A LOT, for medical/therapy appointments. Our closest doctors are 200 miles away.  I cannot tell you how many times we have gone for an appointment and were told that we were going to be admitted, or there was an opening for some test the next day. When we are admitted, it is very rare that we are in the hospital less than a week. Our longest stay was a little over 6 months. Life doesn't stop on the outside just because you are in the hospital. This will hopefully make it a little easier to stay in control of your household and medical situations at the same time.

Our first suggestion is that you invest in something like this: It is a Real Simple File Tote bag. Target carries them, but use what ever you feel comfortable carrying. They have lots of types of these out there.

Next, you are going to want to gather a notebook, pen/pencil, an address book, and a calendar. The notebook and pen/pencil are obvious. I would suggest that you get an actual address book as opposed to using your phone. The only reason is that phones get stolen, the batteries dies, or it's broken, or dropped in the toilet. Usually when you need them the most. Use what you are comfortable with - either a commercial address book or a computer generated one. Just make sure that it is easy to add to and there is enough room to put notes.   Originally, I was going to list all of the things that should be included in the address book. It took up too much room. :) I am going to include some handy forms at the end of this post.  I will also include the Important Numbers List there.

I know a calendar should be a no brainer. However, I wanted to take a minute to talk about yours. We have found that by using a typical one year planner/calendar, we end up toting around the previous year's calendar pages as well. You will find you refer back to them more than you think. Both for your own reference and while you are in the doctor's office. Many times docs will try to buy a little time by saying they have to look up something or other. You can sometimes see them deflate as you pull out your handy-dandy three year calendar and rattle off the last 4 times your child had a particular test & maybe the results. LOL!

Seriously, having the information right at hand will do two things: #1. again save time, since you know we get precious little when we talk to the docs. #2. it will show that you are involved in your child's care. Many people say they are involved and can't tell you what medication their child takes. Health care personnel see too many parents who are going through the motions. They get a little lax in their treatment sometimes, and this will show them that you aren't taking anything lightly. It unnerves many doctors until they figure out that you are not trying to "catch" then at something, just trying to save time and get the most out of your appointment time. The other thing is that, many times, the only constant is the parent. You will be taken MUCH more serious if you whip out the information needed to treat your child correctly. I guess what I am saying is that it will elevate you in the eyes of most doctors. You will be amazed how much more they consider you part of the team when you are informed. Well, there will be some blank calendars in the links section at the end of the post. We also really like these 3 and 5 year calendars from Miles Kimball. They are pretty cheap too!

We try to keep one section of the file for each speciality. Hopefully, you don't get to the point we are - we have run out of room! Anyway, some specialities you probably won't have anything to put in your section.  You can figure that out as you go. Some, like therapy, you will probably have a lot. There is no way you can get a copy of every result of every test run on your child. You wouldn't be able to haul your tote around. The things you want to keep track of will probably vary a little from ours.

We ask for actual copies of reports for big tests: i.e. MRI's, CT's, ECHO's, swallow studies, hearing tests, etc. For us, we keep track of certain blood levels, but we don't need to have a report for EVERY blood test we get. However, if labs are ordered I always try to write down exactly what test was ordered, by which doc (we see a couple a day) and if we can what time they were drawn and by whom. I call the nurse and get actual numbers for the things we are tracking and writing them in the calendar. the others I only make a note of if they are too low or high.   When a doctor orders an imaging test (i.e. xray), I ask for copies. Well, really I only ask for copies of MRI's and CT's. All others, I ask for the reports. We also ask for copies of the tests used for therapy evaluations and a copy of the actual evaluation and resulting plan of care. For some, this may be your IEP.

Since we are currently getting medical care and/or therapy services at 5 different hospitals, only 2 of which are affliated, we also carry blank release forms. Once a year, I make sure to fill out a release form at each hospital for all of our other doctors. There should be no excuses when trying to coordinate treatment, especially if it is a critical situation. Medical Records will usually give you as many blanks as you need. Carry your blanks in your file tote. File your copy of your completed release forms in your coordinating sections in your tote. If you mail them in, do it certified mail with signature required. Staple the confirmation to the release in case somebody gives you guff about not getting it. If you hand it in in person, at least note the name of the person you gave it to, the date, and time. Try to have them initial or sign it.

In addition to any other forms that you want in the links section, you will want to type up a list of all off your doctors/hospitals with their names, addresses, phone, fax numbers along with pharmacy& medical suppliers. Hopefully, these won't be changing very often. Run off about 20 copies and keep in your file tote. I know that is on just about every new patient form we fill out. I just staple it to the back now. I also do this for medications, and listing surgeries and hospitalizations.

I will do another post on this later, but as the parent, YOU should be the expert on your child and their medical issues. This means that you should (if you don't already) research your child's diagnosis as much as possible. Try to stick with reputable sites like National Institutes of Health, American Medical Association, or American Heart Association. One thing I like to do is to go to the professional associations for a particular specialty, say American Association of Clinical Endocrinologists, and check out their actual treatment guidelines and protocals for treating certain conditions. Read them and highlight areas that you are concerned about. Keep these in your file. I can guarantee you, if you bring out treatment protocals, people will take notice. This doesn't mean don't research other options - sometimes a natural or homeopathic course it what is best for you. Just have your research to back it up.

Depending on your situation, you may need to keep copies of Custody Agreements, power of attorny, Advanced Directives (DNR orders), or Organ Donation Forms. If you are in a situation where you have one, make sure you carry a copy of any restraining orders and make sure that security in the hospital is aware.

A few extras that we keep in our file tote: Maps to all of our hospitals (Map Quest, etc.), maps to and from restaurants, church, hotels, grocery, laundry, and Wal-Mart or Target close to the hospital. We get a small phone book (6X9) from our phone company (Yellowbook - I think). It is perfect to put in there. I keep a small business card holder, a highlighter, black and blue pens, insurance cards, small stapler, staples, remover, stamps, envelopes, small scissors, white out tape, calculator, restaurant menus from places that will deliver to the hospital or hotel, a re-loadable phone card. Yes, we have a cell phone, but sometimes there are calls that you need to make that run up your bill. You can get a 200 minute phone card for around $20 or a 500 min. one for $35 at Wal-mart. We also keep a re-loadable, pre-paid visa card in there. We try to keep about $150 on it for emergencies. When we activated it, you get the option to order another. We did and keep it at home. This way, if we need more money, somebody can go get it and load more on it for us.

Some hospitals, especially in Chicago, charge for parking in their garages. You can usually buy a discount pass from the hospital. We keep that in there as well. Some restaurants or other shops have punch cards. If you find one you like close to a hospital that you know you are going to be spending a lot of time at, pick it up and keep it in there. Everntually you will earn your free meal ,or discount, or what ever.

One thing I forgot to mention about the calendars, since we go to several larger cities for treatment, we are always looking for stuff to do, preferably for free. LOL! Luckily, in all of the cities that we go to (Peoria and Chicago, IL and Milwaukee, WI), you can google the city and find lots of free things. For example, in Chicago, the Platetarium, Shedd Aquarium, and several museums have days once week where they are free! You can go to almost all of the exhibits. I get that info and write it on the calendar as soon as they have the schedules up for the year. That way, we don't have to look for something to do if we are stuck in town overnight......and it is a bonus field trip day, since we homeschool! :)

We keep our tote in the van all of the time and just update the forms as needed. Hopefully, this will give you a way to not feel so overwhelmed with all of the "stuff" that you have to keep track of. Now for those links I promised you, follow the link below and it will ask for a password. The password is forms   all small letters.   This will take you to a folder with several pdf files. If you do not have Adobe reader, you will need to download it. It is free. Pick and choose what you need. The two handbook files and some similar forms in different configurations. Enjoy!

http://www.4shared.com/dir/28069145/1630b81d/health_binder_forms.html

Hugs!

Steph

Catching Up....

2010-01-09T03:08:00.000-06:00

Hello All! Once again, I offer an apology to all of our bloggy friends...this is a super busy time of year for us. Lil Man's birthday is 6 days before Christmas. Between trying to schedule all of the holiday get togethers, get our shopping done, avoid H1N1 and other winter nasties, and doctor's vistis - we get a little overwhelmed. Oh yeah, we are trying to get our house together to put it up for sale too. :)

Big Chris and I were also still trying to recover from whatever it was that we caught in October. If I didn't know any better, I would have thought we had mono. That is what it felt like. We are really just now getting back to normal - well, ok - normal for us.

Meanwhile, Lil Man has had a few episodes of crud - but nothing too overwhelming. I really believe they were due to teething. Yes, he is 6. Overnight, all four 6 year molars popped in. All of his teeth have come in in opposite order. His first teeth were his molars, and not until he was 20 months old. He is missing several baby teeth. Some are visible on x-ray, they just haven't come in yet. So, now they are really trying to come up. Unfortunately, Lil Man takes after me in that department. The teeth act like they are going to come in and then go back down - over and over. This turns him in to a permanent drool factory - or "Slobber Butt" as is his new nickname.

Birthday and Christmas were pretty laid back. We were so busy getting things together and trying to recover, we didn't even put up a tree this year. I feel really bad, but I don't think Lil Man missed it. The one unfortunate thing about having a birthday that close to Christmas is that you have to REALLY think ahead for what you think he will be doing or wearing for the rest of the year. We get little things for him throughout the year, but this is the big deal as far as wardrobe, etc. Luckily, I have always bought ahead and usually do the most of my purchases at the end of the season sales (love getting those turtlenecks and t-shirts for $2!). While Lil Man has grown in length consistently, he has not gained weight. He has been able to wear most of his things for over a year. This was the third year for his coat - we finally gave up the ghost. :) So, this is also the time when we clean out all of the drawers, etc. Switch out the old for the new. Seriously, for a child who hardly ever leaves the house - he is a clothes hog! Honestly, most of his wardrobe consists of PJ's. We LOVE these even in the summer with the a/c on. They wear like iron and wash up well. He can go through 3 or more sets a day, depending on what his GI issues are for the day.

Below are some photos from birthday and Christmas. Will post more soon. :)

Birthday cake:

He finally "got" opening presents on about the last two!

This picture of my Mom and nephew cracks me up. They both look scared of whatever it is that my nephew received. LOL!

Merry Christmas to all!!!!

2009-12-24T19:43:00.001-06:00

We just want to say to all fo our friends out there in bloggy land, have a wonderful Christmas. We wish all of our friends and family good health and happines in the New Year.

We also want to thank all of our soldiers, who are out there tonight miles away from their families and friends. Thank you so much for all that you do to keep us safe. God Bless and come hoem safe to us.

Merry Christmas!

First Trophy Buck and 2000th visitor!

2009-12-20T00:27:00.000-06:00

First, I want to thank all of you who still stop by. We are a pretty boring lot, and there isn't usually too much to blog about. I hope to get back on track after the new year. That being said we have hit the 2000 mark! Sorry I didn't have anything spectacular planned for that. Maybe we'll try for 5000. :)

Here is a picture of Lil Man's first trophy buck......courtesy of Uncle Jason (Big Chris's best friend). Thanks Uncle Erp! :)

Happy Birthday Lil' Man!!!!!!!

2009-12-18T20:29:00.006-06:00

So, it seems that it is sort of bloggy tradition that come birthday time, you tell the story of how you got to where you are now. I hope I can accomplish this without losing you in the end - we have a lot to cover to get to where we are today. :)

Well, I guess I had better start at the beginning...Big Chris and I met about this time of year in 2002. I was volunteering at The Fischer Theatre, here in town. Our town has a long history of singers, actors, & dancers - and they all seem to have worked at or performed at the theater. People like Dick and Jerry Van Dyke, Bobby Short, Donald O'Conner, and Gene Hackman! My neighbor and friend, Steve, convinced me to come down one Saturday morning to volunteer. I had just been through a horrible divorce and volunteering at a theater that was being refurbished was much cheaper and more fun than therapy. :)

So, to raise money for the theater remodel, they would show movies on the weekends. I used to work under the stage, in the pitch black, running the boiler for the radiators. During intermission, I got to come up out of the basement. That is where I met Big Chris - during a filming of Holiday Inn.

Much to our surprise, a couple of months later, we were pregnant. For me, the pregnancy was a roller coaster ride, and I don't remember much of it. Mostly because I was suffering from hyperemisis, or SEVERE morning sickness. I was on bed rest for 7 months of the pregnancy. I always say that I am not sure if the medication I was given actually helped the nausea or just made me too tired to care. Throughout all of this, we had many ultrasounds, at least 2 month. Just to make sure that Lil man was still with us. There was no indication of any of what was to come in any of the ultrasounds - well, until the month before he was born.

It was actually my Dad's birthday that year, November 20. I had a regular doctor appointment and a scheduled ultrasound. Both my Mom and big Chris were with me. We went over everything, tests, etc. All of my tests came back normal. At eight months pregnant, I was 30 pounds less than when I got pregnant. I had the ultrasound and the only thing that the doctor mentioned was that he thought there was decreased flow to the umbilical cord, and that could be a sign of Down syndrome. I remember clear as day, him saying, ..."but you don't have to worry about it because none of your other tests indicate any trouble...." OK. We got a great US picture of Lil Mans face.

My Mom asked, "Do you think his eyes look like he has Down syndrome?"

"Nah," I said, "His face is just all squished." He had been in the same position since about 5 months - sitting straight up, back on my left side with one foot up by his mouth and the other under him in my pelvis.

About a month later, at one of my follow-up appointments, I had all of the sudden gained 12 pounds in a week! My blood pressure was so high they wouldn't even let me sit in the waiting room (180 over 100) - I had preeclampsia. The only cure is delivery. So, they put me on a gurney , ran me through the tunnel to the hospital LD floor, where I waited for 9 hours for my "emergency" C-section. Once they had me hooked up to everything, they realized that I was already in labor. I didn't feel anything, but was apparently having regular contractions. Strong enough that they kept asking if I needed something for them.

I FINALLY got into the OR, where it took about another 45 minutes to get the spinal placed. Years earlier, I had broken my back and several vertebra are fused right where they normally put the spinal block in. I also have scoliosis, so that didn't help. Once he got that spinal, it was almost instant. They got me set up and brought Big Chris in. I was waiting for him to fall out. He was soooo nervous!

Unfortunately, because the spinal was put in higher than normal, it numbed more than usual. I could NOT move anything below my neck - including at one point my diaphragm. I couldn't breathe and there was no way for me to tell anybody! I felt like I was going to be sick, but couldn't because everything was paralyzed. About the time I was passing out, the anesthesiologist started bagging me and must have backed off some of the meds in the spinal. I could move my diaphragm and started to feel my fingertips again. Whew! Big Chris was blissfully unaware of what was going on....LOL! He said that he was just trying not to look at what they were doing "behind the curtain."

So, the anesthesiologist tells me that when they hold up my baby he will hold up my head for me to see. He was worried about how numb everything was and didn't want me rolling off the table (that would be my luck). FINALLY, they delivered Lil Man and held him up for me to see. The anesthesiologist held up my head to see him. He was beyond blue - he was gray....and I knew immediately that he had Down syndrome. I took in a sharp breath like you do when you are scared and they took him away to resuscitate him. Meanwhile, the anesthesiologist mistakes my sharp breath for me aspirating and slams my head down and starts bagging me again - breaking my nose in the process. :(

Meanwhile, the nurses and doctors are working hard to clear Lil Man's lungs and get his oxygen levels up. At some point, during all of this, Lil Man had a stroke. We are not sure if it happened while I was waiting for delivery, during,or right after when he was so bad. Unfortunately, we will never know. That night, one of the doctors that delivered him, took it upon himself to go and delete ALL ultrasounds through out my entire pregnancy. We wouldn't find this out until much later.

They take me off to a room and Lil Man off to the NICU. I would not see him again for about 30 hours. Somewhere in the middle of the night, the Nurse Practitioner from the NICU came up to the room. She told us that Lil Man was having trouble keeping his temperature up, his oxygen levels up and that he had a heart murmur. She said that they called in somebody to do an echo on his heart and were sending that off to Peoria to have doctors look at it. (It is funny now how far we thought Peoria was from home). She started to walk out and said that we could see him in the morning, but that they would get us if anything happened. I stopped her and asked her, "What about the Down syndrome?"

She looked as if I had smacked her in the face. She hemmed and hawed and finally said that he had some traits that were consistent with DS, but we wouldn't know anything until genetic tests came back. Whatever. I already knew.

The next few days were a blur. I don't know what medications I was on, but something gave me an allergic reaction, so in addition to having a c-section, recovering from hyperemisis and preecalmpsia, a broken nose, now my entire face was peeling! Like a bad sunburn. Wonderful.

When I finally got to see my little man - he was sooooo small! We are used to babies the size of toddlers in our family. My nephew was 10 lbs. 8 oz, my niece was 9lbs, 12 oz. Little Man was 5 pounds 6 ounces and 19 1/2 inches long. He was so floppy. He had oxygen, just nasal cannula, apnea monitors, etc. He did have a feeding tube - nasal. He just could not eat. I noticed his eye would roll up and to the left and jerk rhythmically. I asked the NICU nurse about it and she thought that it was just a preemie not being able to focus his eyes - even though he wasn't really a preemie (37 weeks). We would later learn that those were the outward signs of seizures - thousands of them - that he was almost constantly enduring. many were sub clinical , or you could see no outward signs. About six weeks later, we get a diagnosis of Infantile Spasms. We are not sure to this day if this is all of that diagnosis, but it is what it is. His seizures are, for the most part, under control now.

We muddled through. Somewhere in all of this, the results from the echo came back . I was in my room and the NICU doctor called me. His exact words were, "Your baby has a communication between the four chambers of his heart." click. What the.....?

I just thought that since he was a c-section baby, the PDA that all babies have didn't close after birth. I wasn't too concerned......hah! We didn't find out until about 10 days later that the heart defect Lil Man had was a complete Balanced AtrialVentricular Canal Defect or AV Canal Defect. We didn't know that there was nothing in his heart to have a hole in. Lil Man's heart formed on the outside, but nothing except one part of a valve formed on the inside. His cardiac surgeon would later tell us that it was a miracle he survived the pregnancy. This would not be the first time we heard this. He also has only two lobes to his Aortic Valve instead of three.

Just to add to all of the mess, during this, my Aunt (Mom's sister) who is also my godmother, very quickly lost her battle with ovarian cancer. This was on her Grandson's birthday. She ended up being buried on my cousin's, her son's birthday - Christmas Eve. sigh....I was told that she was told that I had Lil Man, but they never told her, or had the chance to tell her, what was going on with him. She had been ill, but this was one of those things where nobody really expected it. It was really hard on me because we had been talking a lot while I was on bed rest. She only lived a couple of blocks away from me at the time.

Well, we came home on the 23rd of December. I can't believe that I left Lil Man with is Dad (who had never held a newborn, let alone taken care of one before) to go to my Aunt's funeral on Christmas Eve. I am glad that I was able to go, though.

This is how our adventure began....I will post more on what came next. For now, I just want to say, that I would go through it all again 10 times over, just to have Lil Man here with us. We are so proud of all you have done. We know there is so much more for you to do and show us all. We can't wait to see what is next.

We love you so much! Happy Birthday Baby!

Love,

Mommy and Daddy

Be Forewarned......!

2009-12-12T01:19:00.001-06:00

this is addictive!!!!!

http://www.popularfront.com/snowdays/

Stop by and create your own individual snowflake. :)

Have fun!

Hugs!

Steph

Hannah Grace has Earned Her Wings....

2009-12-08T04:44:00.003-06:00

I want to introduce you to Hannah Grace. She and her family just found out in September that

she had a form of leukemia, ALL. This morning at 3:18 am, Hanna earned her Angel wings. Here is a quote from her caringbridge page:

"Hannah passed away this morning at 3:18. After many times we thought she was gone, she would come back to us. She wanted to go out on her terms... sounds like our sweet pea. Please continue to pray for us as we continue this journey without her.We just want to say how appreciative we are of the staff of ACH. We couldn't have asked for a better place to have been during this time... "

Please pray for Hannah's family right now - especially her little brother. He doesn' quite understand yet. Hannah is one of the children who are on the www.colesfoundation.org site. There are too many there. Please say prayers for them all.

Video from Santa

2009-12-08T02:23:00.002-06:00

Here is the cutest site! You click on the link and fill in a couple of questions about your little one. The site creates a personalized video from Santa! VERY cute! :) Authentic looking too!

Stay tuned to our site. If I can get my act together here, I will be posting about Lil Man's first birthday, close to the 19th. :)

http://portablenorthpole.tv/home/

My Montage 12/6/09 at OneTrueMedia.com

2009-12-07T05:02:00.001-06:00

Don't forget to stop the music at the bottom of the blog!

Photo and video editing at www.OneTrueMedia.com

I'm a Slacker - We Need Your Help!

2009-12-02T16:09:00.003-06:00

First, I want to apologise again for my lack in posts. We have had the crud since before Halloween and I am JUST now feeling like I am not drowning. I still have a cough and zero energy, but that is 200% better than what I was 2 weeks ago. :)

Lil Man has been doing sooooooo well. I am afraid to post about it for fear I would jinx it! I don't know what happened with that seizure back in October, but it seemed to "reset" something in his brain. He has been doing so well with his school work, his attention span, even sitting! Last night, about 2 a.m., he signed "school" to me - he wanted school work!!! (Well, it didn't reset his internal clock - we are still working on that.)

We go to Chicago tomorrow to see the ortho. Hopefully he can figure out a non-surgical way to get Lil Man's kneecaps back where they belong. He used to be able to dislocate them at will - they would pop back and forth. He seemed to PREFER them dislocated - ah the joys of hypotonia. Now, the ligaments in his legs have started to tighten up. The kneecaps are permanently dislocated to the sides of his legs (outsides). We can't get them to go back and now Lil Man can't straighten his legs all the way. We shall see what the solution is for this.

Here is the part where we need your help:

OK - ATTENTION ALL BLOGGER FAMILY - WE NEED YOUR HELP! Please follow the link below and vote for Christopher. We are entered in a Christmas cash giveaway from an organization that we are sooooo thankful to be a part of. They assign members to pray for your family and child when they are sick. Some even come to the hospital to help out with things like meals and such. They are doing a giveaway and the awards are by vote. You can only vote once per e-mail address - they don't sell your information. Just click on "Christmas Cash Giveaway", enter your info, and click on "Christopher Moore" in the drop down box. Thanks so much for your help. The only really sad part is how MANY sick children there are to vote for. :(

http://www.colesfoundation.org/

Thanks so much for your help - More posts coming soon - I promise!

Big Hugs!

Steph

In Memory.....

2009-11-01T09:31:00.004-06:00

Sorry we haven't been posting very much lately. As usual, life gets in the way of getting things done sometimes.

Lil' Man seems to be on the upswing. He has really made a turn around after that seizure. We were starting to get worried that he wasn't crawling anymore, clapping, babbling, etc. He hasn't taken off down the hall yet, but he has started doing his barrel rolls again to get where he wants to go. He is pointing at things now to let you know what he wants, and he has been OBSESSED with sitting in his little feeding chair. I think it is because I put the legs on his little mirror toy (9 months after he got it) and the only way he can see in the mirror is by sitting up. That was my goal - now we will work on it out of his chair, on his own.

We went trick-or-treating last night. For us, we only go two places - the Grandmas. We were able to have Lil Man visit for awhile, and happily able to get a serious family discussion taken care of without having to "sit anybody down". Hopefully, things will improve from here. :)

On a sad note, I hadn't been on the computer for a couple of days. I just found out last night that a friend of mine, and his family, lost his battle with brain cancer on October 28, 2009. Fred and Terry are super people. While we never were able to meet in person, I have known Fred and Terry since about 1997-98. They were a super couple and great friends who supported me through some rough times, including a yucky divorce. Anybody who knew them, knew they had an open invitation to stop by anytime they were in the vicinity (that being Maine). Fred would take you hunting or fishing. He had the same brain cancer that took Ted Kennedy, but fought it much longer - several years. Fred's was in-operable. He and his family endured countless rounds of chemo and radiation, trips to Boston and experimental drugs. They fought hard and Fred met this fight on his own terms. In the end, he was surrounded by his family and Terry. He left his earthly home and entered his happy hunting grounds just the way he wanted to do it. Who could ask for more?

Sending all my love and prayers to Terry and family. RIP - Fred "Melonghunter" Smith.

Congrats and Movie Night

2009-10-27T02:50:00.006-05:00

I stole this clip from Dave 's blog.....thanks Dave! After you watch this clip, stop over to Dave's blog and give him a HUGE congrats! He was just inducted into the Canadian Disabilites Hall of Fame for his years of work education families and caretakers on the rights and responsibilities of dealing with sexuality with the disabled. Way to go Dave and thanks so much for your tireless efforts! By the way, the clip is not Dave, but another man who has made it his mission to advocate for those who are differently abled. Enjoy!

Punkin' Patch

2009-10-19T19:48:00.010-05:00

Well, today we had an impromptu visit to the pumpkin patch. More accurately, the truck patch. There is a pumpkin farm that we have been to, and that Big Chris used to go to every year as a child, for pumpkins. Lucky for us, she comes to town every year and has a truck patch/vegetable stand just south of town. We don't have to go on a "field trip" to get to the farm.

We picked up some really nice pumpkins and were able to get some pictures of Lil Man. It was windy and a bit chilly, so the photo shoot didn't last a s long as I would have liked. But we were able to get some good pics of him. Enjoy!

Hugs!
Steph

P.S. There is still time to register on-line for Lil Man's Buddy Walk Team. The Buddy Walk is this Saturday at the Champaign County Fairgrounds. You can register to walk for our team on-line until midnight tomorrow (Tues) night. After that, you can register at the walk. You can still donate on-line until walk day. We haven't met our goal yet, so we are hoping that some of you can help us out. We only have $75 left! :) Thanks and we'll see you out there!

Home again, Home again.....

2009-10-17T19:34:00.002-05:00

YEAH!!!!!! We are home. Even though it looks like a bomb exploded here - we are back. :)

We are all exhausted from not sleeping (I had already been up about 24 hours when all of this started). Dad is watching NASCAR, and I am going to take a nap. LOL!

Thanks for all of the good thoughts and prayers. Please take some time to visit Jaxson. He is doing well so far, keep up the good work little buddy!

Lindsay is NOT rejecting her new heart! YEAH! She is still having some issues, but hopefully they can be resolved quickly so she can get home as well.

Have a good night folks!

Hugs!

Steph

Woot! Woot!

2009-10-17T11:09:00.002-05:00

Lil Man was laying on his gurney watching the Wiggles - something inspired him - he just pulled himself up to a sitting position for the first time ever!!!!! We haven't even been working on this because he can't sit on his own, well he couldn't....He just did for about 5 minutes until Chris and I got nervous about him leaning. All we need is head trauma and a longer stay in the ER. But what an accomplishment!!!!!

Hopefully Home....

2009-10-17T09:47:00.009-05:00

Well, we are still in the E.R. Our neuro just stopped by and said that we could stay another day, but if cardiology approves we can leave when ever we want to. Hurry up Cardiology!!!! LOL!

So far, nothing has shown up that would have caused new damage etc. It looks like he just all of the sudden started metabolizing his meds a little differently. He has been on the same doses of seizure meds since he was about 7 to 9 months old. We have never had to adjust because he never gains any weight.

We have had confirmation that his seizures are actually Infantile Spasms. We just lucked in to a combo of meds and diet that works for him. Whatever is going on GI- wise and the formula that he is only makes a ketogenic diet, one of the treatments for Infantile Spasms. It wasn't done on purpose - a happy accident. :) So, we are going to increase the dosage on his meds and split them up into two doses per day instead of one. That will keep his levels more even. Hopefully, we won't have any more of those seizures again. It was a pretty scary one, as I said before. They are calling it a Grand Mal - at the very least it was a generalized seizure involving his entire body. Five minutes is a long time for his age. And the fact that this was the first one he has ever had that was this involved. We think he still has breakthoughs every once in awhile, but it only involves his eyes.

Lucky us - one of the 10 channels the hospital gets is PBS Sprout. Yea us! We have had a fun filled night/day of Barney, Sesame Street, Bob the Builder, and Caillou.

Here are some pictures below:

Puny, sicky baby:

In the CT scanner - this kid LOVES x-rays!

What a difference a day makes - chilling out with Sprout (notice Daddy in the background):

Hugs!

Steph

P.S. Here are some pictures that I found on our laptop - we don't use it as much as we used to:

Chillin with Daddy - about a year old:

Halloween 2005 or 6 - I think he actually looks better here. Maybe it is the that he is chunky. He was about 2 or 3.

Waiting....

2009-10-16T21:48:00.002-05:00

Well, we are still sitting in the ER. So far, Lil Man has had x-ray, echo, EKG, bloodwork and head CT. We are supposed to be admitted, and technically we are. There is no room in the hospital, so we stay here tonight. Luckily, the rooms are pretty nice - they are about the same as the PICU in Peoria.

THanks so much for all of the prayers and good thoughts. So far, no new seizures.

Hugs!

Steph

Please Pray....NOW!

2009-10-16T09:19:00.001-05:00

Lil Man had a HUGE sezure this a.m. We are on the way to Chicago to the E.R. Please send prayers.

Thanks!