Wednesday, September 5, 2012

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.