"Oh, Shannon I cried! How wonderful! Those were four good steps!!!! Go Dylan!!!!"
"God is so good!!! I'm so happy!!! SHE IS a miracle!! ((HUGS)) ♥"
"R U SERIOUS? Go DYLIE!!! awesome awesome!"
"So great! I love the look on her therapist's face--total satisfaction!"
" WOW!!!!!!!!!!!!! I keep watching it over and over. Please get it on the blog so my friends that follow her can see it."
"Oh my goodness! She is a literal walking miracle!!! This video just made my day!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"
"Oh. my. goodness. It is a matter of time. You are soooooooooo in trouble - lol. Four short people walking around within the next year. Go Dylie!!!"
"Wow!!!! She is amazing!!!!"
"She's such an amazing little monkey! Love it!!"
And more, and more and more. It was so fun watching the comments flow in as people watched. I am so proud of her, and clearly... CLEARLY, I am not alone. Yay! And yay for all of my friends that are always here to support us!
We went and saw Dr. GI on Monday as promised and we discussed putting on some LBs. the doctor wasn't that happy that Dylan weighs the same amount that she did when she saw her last, about six months ago. So clearly we are doing the right thing by getting her in and getting a plan together.
We put together an action plan with three things. The first is trying an antibiotic that is just limited to the gut, it doesn't go into the blood stream and effect any other meds... it just tackles bugs in the gut that shouldn't be there. Tube fed kids sometimes get an over-growth of bacteria. We all have bacteria in our colon but there are things in place to make sure they don't go up further into the intestines, but with tubies, the bacteria just goes right on in through the stoma. Once there, they just fester in the upper GI and ferment and cause gas and acid, slowing motility.
She offered this medicine up based on both the slow motility and the foul smelling BMs. She said poo should be foul, but they shouldn't "clear the room" which is how I described them. (She's so cute though!) I asked if this is why her morning feed is the hardest one to get in her and she said "absolutely!" because there isn't anything pushing through her for all of those hours. She gave me a coupon for $10 co-pay, which was basically a coupon for up to $75 off, we used that right on up and our co-pay was $58! (!!) It's s three day treatment. Here's to hoping for some change, the morning feeding has only been a problem for the first couple of months so maybe this will do the trick and we can start upping feeds?
The second thing was to try a new formula. I wasn't too big on this one because we fight an insurance battle every month with getting the current formula paid for and so far it's worked in our favor. Why mess with a good thing? That and we probably have 25 cases of it in storage! She gave us a new formula to try and we shall see.
Third is an overnight drip. Ya see... you remember that middle of the night feed that I mentioned? Well it hasn't been happening. Matthew doesn't like to do it because she wakes up and I think it's the thought of him going to bed when she's awake that gets him, but whatever... it's not happening. (And, ahem... it probably should have been.) So Dr. GI suggested 20 CCs and hour for eight hours over-night. There's a 30% greater weight gain for kids who take feeds this way. They aren't sure why but they suspect the food that trickling by has a greater opportunity to absorb that that which goes through in a big group. Interesting.
Logistically this might be a challenge in the evenings, but we could do it I suppose. I mean, there are parents that have tubies on a drip 22 hours a day, so it can be done. She's just SO mobile! (And the kamikaze style dives out of the bed don't help the situation.) She would be on a leash!
Dr. GI said to call after we try the first two and we would go from there... she said she was sure I had a sixth sense about things and would be able to tell if something is different/better. I thought it was funny she mentioned that because I am not shy about saying that mom's with special needs kids get special blessings in order to deal, a "sixth sense" would be one of them.
Uncle Aaron finished our new railing before he left and we finally got it painted and up. Before the 'before' picture there was a plain white railing by the stairs, but that was it.
Looks like it should have always been there right?
We love it!
April... showers?
Just a picture of a sleeping baby... awwwwe...
1 comment:
Congrats on Dylie taking those steps, that is amazing! And good luck with all your new goals!
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