It started Saturday night when Jackson was up all
night! I stayed up with him until 5 AM then John got up around 6 AM with
him. He would cry when he was in his bed or laying down then as soon
as we would pick him up it would stop and he would fall asleep. I know he
was exhausted but just wanted to be held. So Sunday he had 22
seizures. A lot for him since starting the keto diet. I think it
was from being so tired. I know I felt funky myself from the lack of sleep
so I know he did too.
Monday we had 4 appointments. MDCP, vision, PT, social
work. The ladies from MDCP (medically dependant children's program) were
very nice but I was just a little nervous about them being here. The
reason that they came was so that Jackson could go ahead and start getting
benefits from the program. He was put on the waiting list while he was
still in the NICU but the list is about 6 years long. I need help before
then so they have what's called the Rider 28 program. With this they have
to do an evaluation of Jack and then he has to stay over night (4 hours maybe
less) at a nursing home that's 2 hours away. Once that's done then
he will automatically qualify for the Texas Medicaid Waiver and can get nursing
hours.
I know that their job is to evaluate him, it's just hard to
have to answer the same questions I've been answering for the past year.
Does he roll over? No Does he play with toys? No Does he make eye
contact? No I told the nurse that what he is doing now (he was laying on
his back) is all he can do by himself. But she had to fill out her
questionnaire so more questions came.
After they left it was on to vision which he did really good
that day. He was in his black box and followed the light that Sheila was
holding. Then PT came. Renee always entertains him by putting him
in his stander and singing Itsy Bitsy Spider while she makes the hand movements
for him. He loves that song! Next is the social worker. This
is time for Jack to rest and for me to talk about what's been going on with him
for the past week. I really enjoy my time with Melissa.
Tuesday was uneventful but he slept most of the day. I
guess from being worn out from all the stuff on Monday. So I knew that
last night was going to be rough. And I was right. I didn't fall
asleep til 2:30 and he woke me up at 4:00 crying. We battled for about 3
hours. Then today he had PT and speech. I thought
about canceling but I know that he needs it. He was pretty sleepy
during the session but perked up some by the end. But he has had a lot of
seizures today, 16 already and it's only 2:30. Now, of course he's
sleeping.
Tomorrow we are having dinner with Mary, we met
her at Lowe's. She stopped us and said that her daughter is in a
chair like Jack's. Super nice woman and I can't wait to meet her
daughter. She's 17 and the docs told them that she wouldn't survive past
a week. She showed them.
And Friday...what I have been waiting for all week.
SWALLOW STUDY!! I've been testing out some keto snacks with Jack this
week. So far he really liked the applesauce with butter. He made a
terrible face at first but the consistancy worked well for him. It was
pretty thick. I can't wait to start feeding him by mouth. We have
been waiting for the laryngomalasia to clear up before we really started with
mouth feeds. It's gotten so much better and he hardly ever makes
"his noise" any more!
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Applesauce and butter YUM!
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