full Asa update now. I use the blog to go back and find his milestones
and appts and meds. So this will be as much for me as any one else!
We've been having a great few months and it really needs to be
Asa isn't on any of the mito supplements. None. We ran out of Q10 in
the late summer and I just didn't order more. We were buying school
supplies and the Q10 is pricey. I intended to buy it once Asa got a
SSI check. He doesn't get one every month so it ended up being awhile
before he got a check. By that time I'd not seen a decline in his
skills so I just didn't order more. It is hard to pay that much for
something and not see any changes! By October I'd stopped giving the
Carnitor. The stinky smell was AWFUL!!! I have theory that the Q10
helped keep that at bay and once the Q10 was dropped the smell broke
While I didn't notice a change in Asa's tone or endurance he did start
to balance terrible constipation!! Im not sure if that is supplement
related or a coincident. His diet had not changed at all, 4 cups of
Pedisure a day! For a kid who would go several times a day to start
going once every couple of days was awful! The poop was small and
hard, his bottom was bleeding, he was puking daily because nothing was
moving! Not fun!!! If the Carnitor smell is a bad side effect, the
increased poop would have been nice! Too bad we weren't getting that
We added a daily dose of Miralax, extra fluids, tried fiber. Still no
poop! While this would be uncomfortable for anyone, for Asa is also
meant his delayed gastric emptying was even slower, he puked even more
and his appetite was even worse! A huge step backwards!
The new GI plan was to use enemas and suppositories (which we'd
already done to start things moving) to get him going again. By now we
were a good 6 weeks into the constipation and he'd started trying to
"hold" the poop because he knew it would hurt. We don't want that bad
habit to start! Once we had him cleaned out, we started giving him 2
full doses of Miralax a day. He still isn't back to his consistant
poop schedule that I took for granted before, but he is not all backed
up. Occasionally I try to hold off on dose of the Miralax but he
starts having trouble again.
We also added Zantac to his reflux meds. He takes a Prevacid solutab
in the morning and Reglan at night. We can do Reglan 3 times a day but
the neurological side effects scare me! We added the Zantac as a quick
action med when he has his startle episodes. I think it may be
helping! He was very gaggy and drooly this afternoon. Once I gave him
the Zantac it stopped and he asked for food!
And that brings us to the eating update!!! In the last month he has
just bloomed with his eating! He is excited when we sit down to eat.
He wants our food. He grabs at our food, not just the plates and
forks! He is excepting nearly all textures and tastes! He's had
pinches of burgers, rice and gravy, spaghetti, pancakes, scrambled
eggs, sausage, brocolli, spaghetti squash! It is really amazing!!! He
is eating tiny amounts but he is refusing very little! I'm amazed!!!
We are usually only giving him 3 cups of Pedisure a day and the other
calories are from foods and the added juice. He also drinks water
willingly!!! I love it!!!
He has finally picked up on some signs! Finally!!! He signs "more"
mostly appropriately. Sometimes he throws it out because it is the one
he knows and he is frustrated so he goes to the sign he knows the
best. He signs "more, please" when we are feeding him. He signs "all
done" but I wished he used it more on his own instead of going
straight for the all done squeal! He puts his fingers to his lips for
"eat" when I ask if he is hungry. We are working on "no" and he has
done his own version at the cat when Toby gets too close! He is waving
"bye bye" again after we didn't see it for many many months. He puts
his palm to his mouth to blow kisses though he doesn't really throw
He is also making more sounds. He is a champion squealler, screamer
and crier but those are just vocalization and not real sounds. They
get our attention for sure but all squeals sound the same! It is a
guessing game as to what he is unhappy about! Is he bored or in pain?
Is he tired or dirty? It is like a newborn! He recently started some
"mmmmmm" and "nnnnnn". They really don't mean anything but at least he
His behavior is more like a typical 3 year old!!! He is easily bored,
easily frustrated and largely non-mobile so you can imagine how I
spend most of my days!!! Thank heavens for school! He is currently in
a no sleep mode! He does this occasionlly. Like he just forgets how to
sleep! Thank heavens for melatonin!! He also currenly has a face rash.
He does this sometimes for no reason. I wonder if he is teething. He
keeps his fingers in his mouth if he doesn't have a paci in. Yes, he
still has a paci! I'm not sure if it is a soother for me or him! I
could do a whole blog on the paci! He is also letting me brush his
teeth more and even chewing on a toothbrush! All this oral activity
makes me wonder if teeth aren't trying to pop through!
Asa is very cognitively aware of who we all are! He gives hugs and
squeezes our necks! He gets excited when we pull into my mom's
driveway or Target! He laughs at the cat, as long as he doesn't get
too close. He really has a funny personality when he isn't overly
tired or overly frustrated!!
I feel so thankful and blessed that we are seeing the small and huge
inchstones we are able to celebrate!! Honestly the last few months
have been amazing! I can only thank God and praise Him for all the
blessings He gives us! God is good.....all the time!!!