oh, who am i kidding?! now starts the continuous need for puffs plus lotion tissues!
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last thursday ryan had his first therapy session to help improve his motor skills on the right side of his body. he's doing both physical and occupational therapy. the general difference between the two is that occupational therapy(ot) works with the body from the waist up, while physical therapy(pt) works with the body from the waist down.
our first appointment was more of an assessment for ryan. i talked with both therapists about ryan's weaknesses in his right side and they played a few 'games' to see what they had to work with. they said he has a lot of potential, so hopefully our weekly therapy visits will pay off!
yesterday ryan had his second appointment. amy, who will be working with ryan's arm and hand, said that he has good movement in his hand and she was encouraged that he could actually open it. amy taped ryan's good hand so that he would be forced to use "righty." and she sent two rolls of tape home with us so that we can do therapy at home with him as well.
andrea, the physical therapist, told me that ryan has good range of motion in his right leg and foot. but he needs to build strength and muscle. and to help with that, next week we'll look into getting a brace for his right leg/foot or, as ryan also calls it, "righty."we're all righty around here now. show me righty, get it with righty, use righty, and so on. it definitely would've been easier if we would've started this a long time ago. but thankfully we're finally on the right track!
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in other news, ryan's EEG got way bumped up from november 18th to october 7th—this coming wednesday. he needs to be sleep deprived for this test, so the night before—tuesday night—we have to keep him up until midnight. then we (me AND ben) have to wake him up at 4am and keep him awake until his appointment at 7:30am. he'll have about 22 electrodes glued to his scalp (no, they don't have to shave his head) and then he'll have to fall asleep for 10-15 minutes, then they'll wake him up and do some tests to try to figure out what has triggered his seizures. this will take about 2 hours, and then we'll come home and SLEEP!
i've had trouble with how i should pray about this. i don't know if i should pray that ryan will have a seizure while he has the test, or if i should pray for normal EEG results, or what. so i'm just praying for answers. i know y'all will be praying for answers along side me, and i will definitely remind you to pray, but please also pray that we'll all stay awake on wednesday morning and that ryan won't be too crabby!
ok, i'll be honest here. please pray that i won't be too crabby either!!
10 comments:
all righty... yes, i'm commenting at 3:17 a.m. nothing wrong with the time here. it really IS 3 a.m. and i'm still awake. glad therapy is going well. i'm sure that handsome little man Ryry already is breaking the hearts of the therapists! :) love you guys and still praying
Ugh, I'm not looking forward to winter. I got sick on Christmas day last year and it lasted until at least April. I hate being sick, hope you guys all feel better and stay healthy for a while!
Will be praying for Ryan! (and you!)
Okay, i am totally praying for your family- all of you. I don't know what you should want either..guess time will tell. Ryan looks pretty cute in those pics!
I hope you all get the answers you need regarding Ryan, too!
And on a side note, Ryan will know the difference btwn right and left way before most kids, eh? =)
I'll definately be praying for you guys this week. So glad your therapy is going well too. Who's your therapy thru? I know First Steps offers some free theraphy...not sure all the rules to qualify.
Gosh Erin, I know that feeling of not knowing what to hope for. Because Ryan has had an obvious type of seizure(tonic clonic) it isn't as informative if you were to see one on an EEG because you already know it's a generalized tonic clonic. If he were to be having say... staring spells, it would be very helpful to see one on an EEG because it could be absence seizures which are generalized or it could be partial seizures which are specific to one point in the brain. Often these two types of seizures look the same.
However, some kids have EEG's that are normal in between seizures and some do not. In this case again it isn't necessary really to provoke a seizure because it doesn't change the way the EEG looks at any given time.
I am confused when you say there's doing other tests to determine the cause of his seizures? Are they looking for another cause other than the brain malformation? Or maybe I'm just reading that part wrong.
An EEG is still helpful because it can provide a lot of inside into how the brain looks between seizures and that can affect prognosis, likelyhood of gaining seizure control, etc...
Ok, yes I did read that wrong, I see you're looking for possible triggers. I did write you on facebook(not sure if you saw that) but a temp of even 99.5, which you said he had at the time, can definitely trigger seizures. Again that does not mean they are necessarily febrile seizures but fever lowers the seizure threshold making it more likely for a seizure to occur. So that could be one trigger for sure! Not trying to play doctor or anything, obviously it could be something totally different or something you'll never find, so hard to say, but I did want to mention that even that slight of a shift in temperature can trigger a seizure in a child with Epilepsy.
Oh I hope everyone starts feeling better soon.
I think it's okay if you don't know how to pray. That's what the Holy Spirit is for! I'm praying that God will work in this situation and give the doctors and YOU all wisdom. And to heal Ryan completely. Because sometimes I get crazy like that with my praying. :)
yes that is a tough one. you want some answers so however the doctors need to get them is how we hope it goes. I will pray that God will let whatever happen to get this all figured out for you guys. (i had no idea about the difference in OT and PT!)
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