Monday, November 25, 2013

Month and a Half Post Fourth Surgery!

Life has been really nice these past couple of months without seizures. PJ is making huge strides cognitively, it's amazing! His memory was so bad prior to this surgery and now he knows what a cat, dog, lion, and pig say. All correctly...not only is that an awesome accomplishment in general for him buuut it's super awesome for a kiddo with global apraxia! His receptive language has sky rocketed as well, he is right in the middle of the normal range for his age....again amazing. His speech is still not there yet but we are working through that. He can make sounds and say a few words but those words have been programmed in to be used all the time. We are hopeful that now knowing he has apraxia and dysarthria we will be able to get him up to speed by approaching him correctly in ways that will help him develope speech. Right now prompt is a huge part of speech therapy.  He is off of his Topomax now, we are very relieved to be down to three seizure meds....THREE never in two years has he been down to only three. Without need for emergency drugs,Very happy parents over here!! We are having a hearing test scheduled here soon to make sure his hearing is good, just in case. Hopefully it's great and that'll be one less hill to climb for PJ. Although there is a concern that he may have some high frequency hearing loss. We will worry about that when and if there is a need too after his hearing test.

His Hemiplegia has caused him to be, what I like to describe, jellyfish like. He is very sloppy in his movements but we are working on getting that a bit better. His leg, arm, and hand are doing as good as they can. His leg is in worse shape then anything else. He can get around but trips a lot without his brace on. He actually likes wearing his brace...I think it is because he knows it helps him quite a bit. He still walks "sloppy" with it on because of the weakness in his knee and his hip. We are just thankful he is moving on his own :).   His arm gets postured sometimes, bends it at his elbow and cradles it some, but he still uses it when he has to....sometimes without being prompted. His hand is working marvelously. I don't see much of an issue with it although we haven't "compared" it to the other too much and haven't "pushed" it to do tedious tasks. His lack of support though is thought to be contributing to his apraxia so we have to keep trying to strengthen him up! There are plans on getting him into a physiatrist to see if medication may help reduce the tone in his shoulder and arm.

We aren't sure what PJ sees at this point. It's obvious he has left sided peripheral loss in his eyes but to what degree is unknown. He has to turn excessively to really see what's going on towards the left causing his posture to get crazy! Most the time, at home, I can't tell there is even vision loss.  Therapists though have found it to be causing him some subtle problems. We will be seeing a developmental pediatric ophthalmologist soon though...hopefully!

Emotionally PJ is becoming a bit of a wreck and very unpredictable. He can be set off so easily and sometimes there seems to be no reason for it at all. He will throw himself down, kick, scream, hit, and is completely unconsolable. He wants me to hold him but doesn't at the same time. It can be pretty chaotic!  We have found that he has SPD (sensory processing disorder) which may be a huge cause to the fits. What is hard is he goes from being an extreme sensory seeker to shutting down and needing very very little stimulation. It varies from day to day. On top of that I'm sure it is extremely frustrating having things to say and not knowing how to say it.

Trick or treating went soooo well for him this year. Finally the kiddo was able to enjoy it and really seemed to finally understand what was going on. I loved seeing how happy he was!! I'm even more happy to see him this thanksgiving and Christmas eating all that good food without limitations from that awful ketogenic diet!! :)

Hopefully there will be no more seizures and no more surgeries for him. He really seems to be making such great improvements!  Now to find time to add some pictures in here!! 

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