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Monday, July 31, 2017

Another GI visit

W had his checkup with GI a few days ago.  It was a pretty good appointment--he continues to grow, albeit very slowly.  Dr A is pleased, though, because it IS growth and he's sticking to his "new" curve.  He's four point something percent on the growth charts and that percentile creeps up slowly so he periodically jumps up to the next curve.

He saw a nutritionist the other day but not his normal nutritionist.  She wanted me to put him on a low fat diet.  Said if we were really worried about calories, I could stir vegetable oil into skim milk.  Told me to push whole grains on him, particularly whole wheat bread.  His neurologist wants him to avoid breads and some other grains because they can trigger migraines and he just started treatment for migraines--the nutritionist said she'd never heard that and he needs more grains.  I must admit that the nutritionist annoyed me :p  GI advised that I not listen to her because her advice was contrary to what GI and W's regular nutritionist want and goes against what we are already doing that has proven successful.  I was already planning on ignoring her since much of her advice was outdated but GI was also adamant that we ignore her--keep the whole milk and butter, avoid migraine triggers, and keep that boy growing :p

We've scheduled his next swallow study for August 10th.  We are cautiously optimistic that his swallowing has improved due to his habit of stealing unthickened drinks and hiding while he drinks them--while we try to prevent that, it happens and he's been doing ok.  No infections, no major choking/coughing spells unless he spots me coming and tries to chug it.  Dr A has relaxed so much about his getting some unthickened liquids (he's still nursing, steals drinks, etc) because he's never ever had any type of respiratory event because of it.  We are really really lucky because I know lots of kiddos (and adults) who aspirate have to deal with aspiration pneumonia and tons of respiratory issues and we've managed to avoid all of that.  Perhaps because his aspirations seems to be a muscle coordination issue so it doesn't happen often?  Even on his swallow studies, he has lots of swallows that are just fine and then one will penetrate, sometimes shallowly, sometime deep.  I just hope its better because he HATES the thickener.  Hates it so much :p

Sunday, July 30, 2017

Busy Little B update

The Busy Little B had extended school year this summer--it was a short program, only a month, but he went four half days a week and he had so much fun.  Every day he was full of stories of science and math and experiments and the mobile zoo even visited for their unit on animals (he did his very first research project!).  He's looking forward to third grade.  Miss Iz was a tad bit jealous but she's enrolling in the same special needs school in the fall and ESY is automatic through that program--unless the rules changes, she'll get to do ESY next summer.

Saturday, July 29, 2017

Iz update

Iz is mostly holding steady.  She's had a few of her regular specialist visits and things are mostly staying the same but we do have some testing coming up.  The big one is a sleep deprived EEG like W did.  Keeping her up actually shouldn't be too hard since all I have to do is skip her melatonin :p  But man, she'll be grumpy when the time comes.

Our other big change is that developmental recommended she restart OT so we have an evaluation coming up to see if she will qualify again to do it.  She is excited because she loves OT :p  She's started chewing things again (she turned a set of mini blinds into confetti o_O ) so at the very least OT could help with that!

Friday, July 28, 2017

W update

We went on a trip and it just threw everything off :p

W is making good progress in speech therapy--he even put together two words independently (more water) instead of just repeating phrasing he's heard us use often.

OT is also going well--a little too well, in fact, because his fine motor skills have progressed to the point he can get my gate at the top of the stairs open :\

Our PT is at a bit of a loss, though--W continues to be all over the place in balance and coordination, some days he does so well and other days he's constantly falling and running into things.  The neurologist did a bunch of testing and nothing turned up.  She thinks he might be having some migraine activity that is effecting balance, coordination, speech, etc instead of causing pain so we've started him on a daily migraine medication.  So far, it does seem to help as his periods of unsteadiness are shorter and further apart.

He turned two recently and seems to be determined to show is he is most definitely two with the stubbornness and the "I do it myself" attitude LOL