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Thursday, March 31, 2016

Well, Baby W still is not happy about this bottle thing but he is very slowly adjusting to it.  We got a script for ThickIt and he tolerates that better than the cereal so he gives me less fight but still only agrees to about 6-8 ounces a day so far.  Better than before and slowly working its way up, I guess? He still nurses more than anything but I figure every ounce by thickened bottle is one less ounce he's at risk for getting in his lungs :p  I think he might eventually take all his daytime ounces by bottle but I very much doubt he'll give up morning/night nursing.  Those are the two I stopped even trying to do by bottle because he reacted like Iz used to when we tried to up her calories when she was in heart failure.

We are starting to see signs of spring!  The kids' dad took them all to get rain boots so they could splash in the mud and puddles and stuff and Iz especially is the happiest kid around.  That girl loves mud. 

Sunday, March 20, 2016

More bad news....

I'm afraid Friday's swallow study brought bad news--Baby W is aspirating his liquids :(

The SLP working on the study tried him at different thicknesses and nipple flows and found what works for him.  She said he aspirates about thirty swallows in but even a little could be bad if it gets all the way down to his lungs.  He doesn't really even react when it goes in his airways--no coughing or choking.  She wasn't sure if the throat clearing is related (and he's still doing it, even with the thickened milk) but its the "odd" symptom that prompted me to contact his doctor.  My pump and I are becoming good friends (not really, I hate you pump!) and we are working on getting a script for the thickener he needs (the dr's office put in a script for some gel stuff that has a big warning label on the box to NOT use it for infants under twelve months instead of a script for the powder the SLP at the hospital taught me about.  The office was closed when I went to pick up the script so we put the order on hold until I can contact them Monday and see if they will change it).  At the moment, we are using rice cereal and oh my does he need a lot of it.  TEN teaspoons for every four ounces.  His liquids have to be the consistency of honey through a medium flow nipple.

Thursday, March 17, 2016

More testing....

Tomorrow we head back to the hospital again for another test for The Baby.  His reflux has returned in full force along with throat clearing.  Every time he eats or drinks, he's clearing his throat the whole time.  Sometimes its just a couple times during a feed, sometimes its every thirty to sixty seconds the whole time.  Dr M is worried he might be having "micro-aspirations" and wants to get a swallow study to rule them out.  This kid LOVES to eat.  He nurses well and is satisfied, he loves baby food now that he's discovered mixed foods (when we were doing single foods he had no interest beyond a bite or two.  Now that he's on to a couple things mixed together he'll down 3-5 ounces before telling me he's full), and he's so active.  Crawling, standing, climbing, dancing.  If he'd just stop spitting his food back up!  Now that he's eating some solids, we are seeing just how long food is staying in his stomach--he was still spitting up dabs of orangish colored milk four hours after he ate sweet potatoes :|

Wednesday, March 16, 2016

The consensus amongst Izzy's medical and therapy team seems to be she needs to be in preschool, preferable the sped preschool through the early childhood program.  Now to just get the school on board with that........

Monday, March 14, 2016

Big Changes Ahead

My Busy Little B has some big changes ahead!  He is currently  in the first grade and has never been in a typical classroom.  He did two years of sped preschool and a year of sped kindergarten and this year for first grade he was in a small behavioral classroom (new state means different classification--in our old state everything went through sped).  But he has done so fantastic this year that he is ready to try transitioning to a regular classroom :)  We had the transition meeting tonight for him to start his day at our local elementary. He'll go for an hour and then return to his normal school and classroom.  As he adjusts to the hour, they'll add a second hour.  They will follow his cues so the transition to full day could happen swiftly or over the course of years.  I like the idea of not having a set schedule to transition and taking it slow based on his needs and comfort level :)  They have to set up transportation between the two schools for after his hour and then he'll start, probably next week.

Saturday, March 12, 2016

Lots of testing :/

So our littlest guy has been struggling to gain weight--he has pretty bad reflux and was constantly spitting up.  We tried a couple different meds and prilosec seems to work ok.  He still spits up but not nearly as much and he has started gaining again but ssssllllloooooowwwwwwlllllllllyyyyyyy.  Because the older kids all have "stuff" going on, our current pediatrician ordered a bunch of tests to see if there are any of the "common" genetic causes going on, including the oh-so-fun sweat test (three and a half hours in the hospital for that one.  He was cooperative but his sweat glands were not so we had to do the test twice on one arm. Fun times).  So far, nothing much has turned up.  He has a few slightly off results on the blood work but not so far out of range they are really worried.  He has been voracious in his appetite lately, both for nursing and actual food so perhaps by his next appointment his weight will have caught up on its own :p

Friday, March 4, 2016

Developmental Pediatrician

Iz met with the developmental pediatrician for the first time.  He says her intelligence testing shows she's one smart little girl but her current abilities are way low and he thinks it all comes down to the anxiety she developed after surgery.  He asked permission to talk to the school and try to get them to make a medical exemption to bump her up on the wait list and get a spot for preschool and see if regular classroom experience can help her get past the anxiety (unlike her EI group where she made not a sound for over two years....) and if she still can't participate, he's recommending we try a very low level anxiety med.  He's in agreement with the neuropsych that its selective mutism but while therapy alone has helped improve things, its not enough.  He talked about maybe getting her into some other services as well--currently she's in OT to work on motor skills and sensory issues and she meets with a therapist every few weeks.  He mentioned maybe some PT for the low muscle tone and maybe speech.  Guess we'll see what happens?