Tuesday, August 11, 2009

Dear Son Update

Photo of Dear Son sleeping in the recliner. You can see he doesn't look well. I turn the recliner so I can see him. You can also see how his right hand turns to the right; the new hand splints will keep this from getting worse.

First, let me apologize for the delay in posting. Dear Son's seizure issues have been ongoing for the past few weeks and quite severe at times. Not only was he having increased seizures, but he was sleeping a lot, sometimes up to twenty four hours a day. As a result, I have been in contact with his pediatric neurologist several times over the past few weeks and he's made several medication increases. I think we are heading in the right direction, but we aren't quite there yet. I remembered last August, Dear Son had similar issues and was hospitalized for seizures at around this time. In addition to his seizures, I have been trying to get him up and at least sit him upright for a few hours a day and that too has proved challenging. Dear Son has continued to grow taller and heavier and that has made it more difficult. It is wonderful however to see him growing up.
In this picture, a seizure is just starting. You can see the grimace on his face. You can also tell from his posture in the chair, that he's not doing very well. He is slumped down in the chair and is not able to maintain much of an upright position, even if you try to lift him up in the chair. The pink blanket is to help prop him in the chair to keep him from falling over on his right side, since he can't sit up very well anymore. I used the black magnet on his left wrist and activated it over his vagus nerve stimulator to try and stop the seizure (implanted under his left armpit) just prior to taking this photo.

On top of the seizure issues, I sustained an injury to my left knee that left me a bit incapacitated for almost two weeks. I had three knee surgeries over ten years ago and at that time, they recommended a left knee replacement but said I was too young so it was never done. Somehow, I injured this knee again, I think while moving Dear Son, and I was unable to walk and in severe pain. As a result, I couldn't do much of anything, let alone any blogging or pc time. I was icing it repeatedly throughout the day and after two weeks, I can now walk around the house however doing something like grocery shopping still causes a lot of pain and swelling. I was able to get a lot of reading done, reading a book or so every day (work days excluded) so that was nice.

Another picture of him slumped in the chair. The chair is turned and the coffee table moved over to allow me to use the hoyer lift. The blue sling that he sits on attaches to the hoyer lift so I can move him. Underneath that is a pad over the chair in case his briefs (diaper) leaks.

I have also been busy with Dear Son's appointments. Today we saw the pulmonary specialist at Big Academic Medical Center in May (This was a follow up visit from his ICU hospitalization last May.). Last week, we had new hand splints made for both hands and senior portraits. (In the first picture above, you can see his hands are twisted. The splints will hold them straight and keep them from getting worse.). The week prior we had wheelchair clinic and list goes on and on. Thankfully, Dad is helping me take him to all appointments since I can't lift him.

Perhaps the most exciting appointment, was getting Dear Son's senior portraits for the high school yearbook. That was one of my goals as a mother, to have it done. Dear Son goes out of district for high school however they do not include him on his current high school's announcement listing, despite my repeated requests. As a result, he hasn't had his picture taken in years. Instead, I get high school announcements for his home school district, which aren't meaningful. At the IEP last year, I had two wishes for his senior year in high school: first, to get his senior picture in the yearbook and second, to go to a school dance. I'd love to see him all dressed up for prom or some dance. That would be a nice experience for me as a mother. Now that he has been granted the Make a Wish trip to Disneyworld, it is not as important that he go to the senior prom since we'll have a lot of good memories from our Make a Wish trip.

The yearbook photo shoot went great! I think there are some wonderful shots of Dear Son. The first ten minutes or so of the photo shoot was wonderful-he was all smiles and I couldn't have asked for a better experience. What a fun time I had! It was great seeing him all grown up and smiling. After that, he got tired. I was able to get a preview of some of the photos and they looked pretty good. He had photos with three different backgrounds and then his cap and gown picture. I can't believe he will be a senior in high school! I should get the proofs in another week or so and I'll try to share them. I can't wait to order some of these pictures. Normally, I take all of my own photos of Dear Son but it is nice to have some different backgrounds for a change.

Dear Son returns to school next week so things should get a little easier and I should be back to blogging a bit more.

As always, thank you for checking in on us and your interest in Dear Son.


Mary said...

You have so much stamina, and I know it's purely out of love for Dear Son. Only a mother that loves her child can sacrifice the way you do, particularly with a bad knee...that is painful, I know. I hope the seizures are subsiding and both of you can have some rest and painless night. I'm still admiring your beautiful make-over, and so glad you have your work to balance out your life a little. Take care, dear friend!



Thimbelle said...

I hope you will be able to post Dear Son's pictures for us to see! Like so many of your readers, I feel like I have watched Dear Son grow up, and it will be a treat for us to see him so handsome in his cap and gown! :)

Poppy Q said...

Dream mom, sorry to hear about your knee. I hope it heals quickly.

Thanks for showing us the pictures of dear son, he is certainly growing, and we are glad to hear that you got some lovely pictures of him.

We were using our hoyer lift at work today, and so I was thinking of you and how many times a day you must use it.

You are all in our thoughts.
Julie and Poppy Q

Beverly said...

sending prayers!

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