Cerebral Palsy Facts

Here are a few facts regarding CP, it would be nice to know more people were aware.

rylan with his sister.......but as you can see rylans wrist are contracted and he cannot straighten his right leg

Cerebral Palsy is a condition that affects movement,muscle, tone, moter skills and development.

It affects 1 in 278 people

Despite advancements in medicine the incidence of cerebral palsy continues to rise

1 in 4 children with it can not dress or feed themselves

1 in 3 children with CP cannot walk

1 in 4 children with cerebral palsy have epileptic seizures

there is no cure

Cerebral palsy is the second most common neurological impairment in childhood.

 Spasticity of one or more limbs is the most common disability now associated with new cases of cerebral palsy

Of congenital disorders, CP has the highest life-term costs per new case, averaging $503,000 in 1992 dollars (approx. $650,000 in 2003 dollars).   84.5%  of children with cerebral palsy receive physical therapy 6 times a month, 50% receive occupational therapy about 5 times a month and 37% see a speech therapist about 5 times a month.

xoxoxo

We need research, funding and national surveillance for CP

Swallow Study fun

Ever since Rylan had his tonsils and his adenoids removed we began to notice a new habit Rylan has begun. Have you ever tried to talk to some body that seems to have something in the back of their throat and then they clear it? Well this seemed to be a non-stop thing for Rylan.....and we were concerned his chances of aspirating were getting pretty high.So his wonderful pulmonologist got us in for a swallow study.
So off to TMC we go.....

waiting ever so patiently

We head over to radiology and they check us in....we wait in the waiting room and they call us back......to wait in yet another waiting room

watching Barney....he was not amused

Finally the speech therapist arrives and get a brief history on whats been going on.....the nice thing was she has been there for the other swallow studies with Rylan so she had a very accurate outlook and what to do.....they get the room ready and off we go

getting set up in his "special chair"

The funny thing about this entire test was Rylan was in love with the therapist he was flirty and very excited.....

So when the test had begun we became very relived the there was no aspiration....due to the fact Rylans soft pallet does not come down he relys a lot on gravity to do the work for him. therefore the junky sound is the liquid hanging out in his throat.......we were taught different ways to position his head so that this problem may eventually go away.

Well with fingers crossed we will hope that his swallowing will stay decent.......and the feeding tube is still light years away

We refer to it as "Pain and Tourture"

As a parent there are always the little inconveniences that like to get to us......Such as making sure homeworks done, diapers are clean, all food is eaten...etc etc. In my case was having to go up to Tucson 2 days in a row for appts. It may sound like im complaining about something so little....but when your counting in a 40 min drive both ways and a time constraint of medication, lunch, and Steven having to go to work it gets a little crazy.  Yesterday we had to go see Dr. Talwar

Dr. Talwar

Dr. Talwar has been seeing Rylan all his life. He is one of the BEST neurologists ever! Rylan's check up went great and Rylan's making progress great! My big thanks to Dr. Talwar (and I should knock on wood) is Rylan has been seizure free for almost 2 yrs!

Today was a fun day though. When we got to the childrens clinic this morning the first thing we had to do is get Rylan's blood drawn. That was a task. Because Rylan is sooo contracted on top he has to have blood drawn from his feet. After it took some time to find a good vein everything was going well till Rylan ripped the needle out....so they moved to the other foot. So after 15 mins Rylan walks out with 3 holes in his feet....and unfortunately has to endure Physical Therapy.

Rylan has a PT appt. every other week. Which is one of the necessities that can be a pain sometimes........but its worth it.

not a flattering photo but he was wore out from the blood work

Rylan's PT is Danyle she has been Rylans Physical therapist for most of his life.......So she took us back to the room where we were gonna try something new today. She Started Rylan out with stretching 

Danyle and Rylan stretching

Yeah....it sucks to be Rylan lol

So the new thing Danyle wanted to try was the treadmill....Rylan was buckled in a harness and Danyle walked his legs to not only stretch but build the sensation his muscles miss from not walking.

ready to go

he having a blast! cant you tell????

Use those LEGS!!!!

After we did about 5 mins of the treadmill Rylan got to ride the tricyle! this is the coolest thing ever......and something about it makes him push the pedals on his own and he loves it!

Dad and Danyle getting him in

a little slow

now he is happy!

He went for a cruise around the clinic....its no big deal

When all was over Rylan looked like he was gonna pass out! Thats just another day in the life of us!