My Theories

Here are my possibly theories on why Daniel will not drink from a bottle since his hip surgery.

I mean I should know right? 

Since I've been medically trained!  HA HA  NOT!

• His throat is irritated from having the breathing tube shoved down his throat? Maybe it hit/pinched a nerve somewhere in the back of his throat?
• He normally has a lot of spasticity in his body.  Because he is casted on his legs, his arms are more relaxed, he is not drooling....perhaps he used his tone to help him suck prior to surgery?
• He had some possible seizures after surgery and perhaps he lost his ability to suck? (Everything else seems fine)
• He had a very set way of sitting on my lap and drinking his bottle, now he cannot get into the right position so he is just refusing to eat?
• The formula tastes different now because of the anesthesia? (suggest by another mom)
•  He is just being a stubborn little boy and likes to stress me out? :)

He doesn't fit to well.

Out for a walk

practicing sitting up!

This honey bear and a gummy bear video gets him to drink.

At our new desk in the classroom!

Let me know what your theories are!

Remember us?

wow!  talk about taking some time off eh?  Times are a changin'!  I use to blog all the time and well obviously as you can see from when the last post was, that isn't the case anymore.  I guess we just kind of got caught up in life and have been tootin' along trying to stay on track.  Making quick updates on Daniel's progress on facebook.  Truthfully I kind of miss keeping track here.

So while Daniel is practicing his sight words on his iPad, I figured I'd do some quick catching up.  Young Daniel played some baseball this summer, has been going to riding therapy at O.A.T.S., riding his new bike and a little swimming, among his standard therapies.

Riding his new bike

swimming with sister Brittany

Swimming with sister Victoria

At the zoo with his sister Caitlin for her birthday

Lynn from O.A.T.S and Adam who volunteered all summer to help Daniel ride

Fun times riding the horse despite the 100 degree weather!

Adam and Daniel

Checking out the bike

Sitting up tall on Rio!

more swimming and smiles

Celebrating a good hit with sister Brittany

His sisters volunteered during the summer to help Daniel and the other kiddos with Miracle League of Michigan

Joke Night 2012

 He also came out of his shell a little bit and attended an "AAC Joke night".  A bunch of AAC users met at a local ice cream shop and sat around eating ice cream and telling jokes with their devices.  It was  a every fun event that his SLP helped to organize. He rocked it too!  He is doing really well with his device and is very quick with finding icons.  He even tried his hand (without permission) on programming!

In June we unexpectedly found out that Daniel's left hip is 80-90% out of the socket and will require some hip surgery.  Of course this is after much deliberation but it is scheduled for September 25th.  Unless of course when we go in for our final consult on the 10th and there is a difference with the x-rays!  Miracles have been known to happen right?

Daniel is still considered "home bound" for school this year, his IEP is this Friday. Ugh! His upcoming surgery, poor immune system and issues with seizures, his doctor thinks it best he does his schooling at home.  For many reasons besides these I tend to agree. With the surgery he will be in a Spica cast for 6-10 weeks.  In case you aren't familiar with what this is; they begin at the chest and may extend down to cover one leg, both legs, or the leg on one side and down to the hip or knee of the other side. 

Sounds comfortable no?

We are also weaning Daniel off of some of his seizure medication.  This is good and bad.  Good because I hate him being on so many medications, bad because its the medication that originally stopped his seizures and keeps them at bay.  The long term side effects for being on Vigabatrin is loss of peripheral vision.  His vision is one of his strong senses so we would hate to have anything happen.  So currently this is his cocktail of choice to keep everything in check.

Vigabatrin, Trileptol to keep seizures controlled. Zanaflex to relieve some of the spasticity in his muscles. Previcid for his reflux. Robinul to help with the drooling caused by paralysis/weak muscles in his face and throat.  This helps to decrease amount of saliva so he does not aspirate (choke). 
Klonopin wafers for emergency of stopping seizures that last longer than 3 minutes.

My not so little guy at his 7 yr check up came in at a whopping 55 
lbs and stands  4'2" tall. 

All this being said, he is your typical little boy; thinks farting and burping are hilarious, likes to play with cars, watch tv and be obnoxious!  Same as every other kid.

 

Cyclone Daniel

The storm hits this house on a daily basis. No matter how much I try, it always ends up with toys and miscellaneous stuff spewed everywhere!

EVERYWHERE!

 Daniel continually tells me with the AAC device "Where's my money?" so we are slowly starting to work on money.  I think he's getting it because now he doesn't ask for coins, he was the bills!

 EVERYTHING comes out, we bounce from one toy to another, and throw in some educational stuff with the AAC device.  We also switch up which piece of equipment we are in.  A lot of moving from stander, to walker, to mygo chair, to a different walker, to bumbo seat.  

Variety - the spice of life!

 I won't blame everything on Daniel. I will take blame for the liter of pop that exploded in the freezer yesterday and the jello that was supposed to be thickening that I spilled all over the bottom shelf in the fridge.

So while I do those little tasks and pick up the mess....

Daniel will enjoy a movie on the computer that he has probably watched 800 times and I can say the lines for each scene!  

Brilliant Idea!

Ahhhhh....headphones!(I should have thought of this before!)

Well Hey There!

Talk about being busy for a little while!

Figure I'd give a small update on whats been going on around here for the past few months. I have been sorely lacking in keeping this blog updated. Seems I go in spurts, although I have been updating on Facebook more often than anything.  Look me up over there if you're interested.  I still lead a somewhat boring life in the FB world too! :)

So, Daniel is your typical 6 year old boy.  He is very opinionated and temperamental.  Has his good day and beware of the bad!  But for the most part, he is a happy go lucky kiddo.  He is rocking his AAC device -PRC ECO2 with ECOpoint.  We mix it up a little differently than most families I've heard of.  Some of the user area in his device has 15 cells, others have 60, and them sometimes 45.  It probably isn't recommended, but it seems to work for him.  Gives him practice getting the smaller cells, but he still can get his larger cells without the frustration.

 This has to be one of Daniel's new favorite pages.  Granted its not really working on his language stills, but boy does it give him the independence and freedom he loves.  This screen is programmed to change the channel and turn the TV on/off.  There is also a link from the "movie" cell which goes to a page with 60 cells for all of his movies.  Kid loves the power, and getting a reaction from changing channels on Dad when some sports stuff is on!  I taught him well ;)

Daniel recently had botox and an alcohol block.  We were very iffy on the procedure.  Not really the procedure itself, but they knocked him out to do it this time because of the block and also how many pokes he was getting.  For a brief moment, Daniel was a human pin cushion!  Thankfully he wasn't aware and didn't seem to have any soreness afterwards. He did milk it for most of the day and just crashed on the sofa, spitting out commands for me from his AAC!

Here is a super cute photo of Daniel playing with one of his many games he got for Christmas

And of course, he still loves to do crafty things...Here is the masterpiece of mixed colors of poster paint....we call it "Doo-doo doo with a little blue" off the paper!  See that evil look??  He thinks he's funny....not so much! ;)

Daniel also continues to be a very busy boy.  We are doing a mix of homeschooling with visits from the school district teacher.  We also have home bound services with Speech, PT, OT and adaptive gym class.  We still do his outside therapies also, so make daily trips for our outstanding Speech, OT & PT.  So to give you a quick shot of what we do weekly (does not include any doctor visits or those types of appointments)

Monday- home bound teacher, outside speech

Tuesday - home bound OT/PT (together), outside OT, outside PT

Wednesday - home bound speech & teacher (together), adaptive gym

Thursday - outside speech, outside OT, outside PT, adaptive gym

Friday - home bound teacher, home bound speech, outside speech, adaptive gym

And shoved in between all that we have homeschooling and other fun stuff (like home business I'm trying to launch)

So I'm sure you can see where we have been in the past few months!

Hope everyone out there is well and your children are flourishing and will continue in 2012.