Friday, January 7, 2011
Warning - this is a long post, please bear with me!
Wednesday he got his Botox injections. It had been 4
months since his last injection because I canceled due to not feeling
well. He didn't have to get as many injections this time. No pecs
and no thumbs!! I think the Baclofen is really working for his spasticity
and that's why he didn't need it. While we were there we
discussed his medications and what is going on with him. The
neurologist wants to go up on the Baclofen because he has these nasty spasms in
his back.
I told that the neuro that he has been having
spasms and I don't know if they are seizures. In true Jackson
fashion he had a few spasms while we were there and he thought that they
were epileptic spasms. Seizures!! He agreed that we should do an
EEG. That was this morning.
John and I both went this morning but they told us that only
one parent could go back with him. Since I wasn't feeling that well this
morning John took him back. He said that he cried a lot and he did have
quite a few spasms and one big seizure. When we got home I called Nurse
Betty and told her that he had the EEG today and asked if the neuro could read it
today. I know it was a long shot but I thought it would be very
beneficial for our appointment with the keto team on Monday.
In the mean time Jack's nurse got here and gave him a
bath. His hair was pretty nasty from the EEG. Then changed his
MIC-KEY button. I usually do this but because it's something that she can
do I let her. Below are pictures of the process. It may not look
very different from the outside but it gets really gunky on the inside.
 |
| Old Button |
 |
| Just waiting |
 |
| Out with the old |
 |
| His stoma |
 |
| In with the new |
 |
| New button |
And then I got the phone call from the neuro. He
did get to look at his EEG. He said that he had 11 seizures in the two
hours that they were recording. He is also in modified hyppsarythmia with
multifocal spike waves. Which means that his brain waves are still
chaotic. To me it means bad news. He was actually out of
hyppsarythmia before we started the diet.
The only thing we have done different is start the
Baclofen. It may have been too many carbs for his 4.25:1 ratio of the
diet. We will find out more on Monday. He also hasn't been
producing as many ketones as we would like. He has been between moderate
to moderate-large. I must confess that I haven't been checking his
ketones because I've felt so bad. And I haven't been counting his
seizures. Bad Mommy!
I hope that we will be able to do something either with the
diet or meds. The neuro here said that we may need to modify his
meds. More answers Monday...or more questions.
I got in the floor with him and stretched his legs, arms,
neck and back out this evening. It must have felt good and loosened him
up because he spent the next hour kicking his legs and looking at his
lights. He loves lights! He can be very upset and we turn on any
one of his lights then he calms down. Sweet baby!
Today made 13 weeks into this pregnancy. I'm starting
to feel better but I still have bad moments. For the past two days I
have been battling a migraine. Migraines suck! And Tylenol doesn't
even phase them. I took this picture last week but my belly hasn't
changed much. Sorry for the bad picture!
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