Jack's Peanut: Memory Monday (Updates) 11/15/10

Monday, November 15, 2010

I finally talked to Jack's neurologist today. I put a call in last Monday for him to call me. After a second phone call to his nurse and complaining about having to deal with too many neurologists, he called back within the hour. Since I had him on the phone I bombarded him with questions. We were on the phone for about 20 minutes and this is what I got from it:

-Can he start Baclofen? Yes, starting tomorrow!!
-Rubinol? Hold on that, he only likes to start one med at a time.
-Melatonin? Holding on that one too, the Baclofen may help with sleep so he may not need this.
-He has had a sty on his eye for about 2 months. And now has 4 more!! So I asked if he could give him something for this. It will be an ointment to put on his eyelids to decrease the bacteria. (Not brain related but his neuro will do anything for him)
-I informed him of the change in his seizures. They are now longer and more violent. He was concerned about this and is going to talk to the keto team about this.
-Any chance we can wean Keppra? Nope. He thinks that we would see an increase in seizures. With the change in his seizures he thinks we may need to increase medication or change meds all together.

He didn't tell me anything that I didn't know but every time I get off the phone with any neurologists I feel let down. Kind of like he took the wind out of my sails. It's nothing against him, I just wish I didn't have to deal with any neurologist!

On another note...he had vision and physical therapy today. He did pretty good with both. Once he woke up. It took his PT and I over half his treatment time to wake him up. She worked on sitting against the couch and he held his head up a few times!

The rest of the week should be busy. Tuesday I have to go get his news meds. Wednesday he has speech therapy and Gary from South Texas Medical is bringing his new equipment (light box, communicative devices and buttons). Thursday the dietitian will come to weigh him. All together he and I have 8 appointments this week. These are the times that I am so glad that I have help!

Speaking of help...she's working out well. She gives him a bath when she gets here. That alone takes so much off my shoulders. This means that I don't have to try to fit it in my crazy schedule in the evenings. And if John is out of town (like now) I really struggle to do it on my own.

He is consistent with feeding now. This is definitely a first for him. It takes him only 10 minutes to get his snacks down. When we started it took about 30 minutes! Maybe one day we will be able to decrease his tube feds and increase eating by mouth. That's a good goal for him! And me!