Nothing too crazy is going on.....well maybe kinda.
So, we are working with two new meds to help Noah with his vomiting, Zofran and Periactin. Zofran is well known for being used to prevent nausea and vomiting. The Periactin is an antihistamine, but has many off label uses, one being that is helps with the interrupting the signal from the brain to the GI system that tells it to vomit when stimuli are introduced (a gag, cough, sneeze, etc.) We were doing them one by one bc his feeding team Dr's didn't want to do both at one time bc we wouldn't know what med was helping or not. Well, it didn't help him. So I called & asked ab using both of them, bc many of his tubie friends said they used both to help with their kiddos and it really seemed to make a big difference. So we finally got the OK and a plan in place to use both meds daily. We started this yesterday and so far NO PUKE! Zero.....He did gag when he woke up this AM, but otherwise he is tolerating 4-5oz boluses of a blended diet and doing really, really well. I don't want to jinx it, but it's been fanfreakintastic! I would LOVE for this to be our magic potion that helps him. It does seem to make him a tad more tired than his usual self and I am not sure if that will level out or just a 'side effect.' I'm not talking lethargic and laying around doing nothing, but he certainly wants to "calm down and watch TV" more than he should. I really hope it levels off, but it's kinda a catch 22....do I leave him on it vomit free, or a lot less vomit and have him a little slower than his norm, or take him off and let him puke 4-8 times a day...I am going to go with a little slow and just hope his little body adjusts. I really don't like to have him on meds to be honest, I'd rather him not take them, BUT getting him to feel good and not vomit multiple times a day, it's worth it. So we are on Day 2 and going well. It's almost time for his 3rd feed of the day so we shall see.
As you all know, his stomach emptying is hit or miss some days. Some days he will do awesome and empty what would I would call "good for him," other days, like yesterday he was so damn s-l-o-w. I know viruses and colds can slow down digestion, but he isn't sick. I don't know why some days are better than others. Anyways, we are waiting for the call back about setting up his Manometry testing. {Here is a link to info on that, http://www.cincinnatichildrens.org/health/a/antro-duod-mano/} We hope to set this up within the next 2-3 weeks. His motility Dr is out of town, so we are waiting on him to reok it and set a date to do it. Hopefully that can give us some more answers on his tummy too.
We are still waiting on his microarry testing, the one that wills how us how his little chromosomes are, if anything is a little off or missing. It's been 3 weeks and I am getting antsy. He was also tested for Fragile X and that came back normal. So we can mark that off. As weird as it sounds, I hope something comes back with his microarry. We know something is going on with him, but for a long time we fought against having him tested/doing tests, I really think it was denial, "oh he is ok, he will grow out of it, blah, blah blah." Yeah, now we are over it. We know something is going on, we are 3 yrs into this and are beyond ready to know what is up, why he has some of his delays, vomits, low tone, wont' eat.....the list can go on..lol So, if we get an SOMETHING from his microarry maybe it will help piece together the puzzle that is Noah.
A little Brock update, he is crazy and wild and clingy. Man, this child is demanding. Noah was SO easy, even with his issues, and Brock is much harder. he is clingy, fussy, whines, even at 18 months LOVES to be held. Oh, and the temper tantrums! O-M-G! If you tell him no to something he wants, not matter what is it, falls on the floor, tears, kicks....the whole 9 yards! DRAMATIC. We can't help, but laugh at him. He is so funny and as Noah says "Nothing, but trouble." He is something....whoosh! lol Noah was NEVER like this. He was content with playing alone and hand to heart, not that whiney even at 3....Brock is one minute happy laughing, the next screaming "UP UP UP! MOMMMMAA UP" and mad at everything. It's been a ride..haha. He is talking SO much it's crazy. He is starting to put words together, he says "I dunno, I love you...and his new favorite, "NO MINE NO NO NO!'' aren't toddlers the best. It really is neat to watch him grow and develop "on time" Noah was on Noah's time and was slow to do things, Brock has always been early...walked at 10 months, has currently 14.5 teeth...{This bottom molar may be the death of me} Got his 1st tooth at 4 months...he was early at most things, or maybe it's normal and after Noah seems really quick. In our house, he is fast, lets just say that. lol. We are still trying to fatten him up some. He is coming close to 22lbs and 32" He is so tiny, he truly is, and coming from past FTT kiddo, it wasn't fun or easy.....BUT he eats and likes it most days, so I will take him small and eating and gain a little slower vs another tube.
So there ya have it, an update!!
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