On Friday we went to Boston...again. This time we saw
our nutritionist, who we love! She is the sweetest lady. She is also a mom. So she completely understands all of our concerns with Amber suddenly not getting the oral feedings she used to have and the stress of being on the g-tube for almost a whole day (and the fact that we know our baby best!). She gave us some awesome news!! Amber is gaining 3 times as much as they expected her to! She is now a whopping 10 lbs 14 ounces! She is looking rather chubby! The worrisome part is she is still 23 inches long, she has not gained any inches in almost 5 months. Back to good news, because Amber is doing so well she now needs to be cut back on her feeding. Everything she gets is still 26 calories. She is still getting 24 ml per hour but now it is only for 16 hours! We now have 8 hours off!! She is now getting 3 ounces by mouth every 3-4 hours as well. We're hoping she does well on this so we can move her to being on the g-tube for 12 hours and take 4 ounces every 3-4 hours.
This Wednesday we'll be in Boston again to see Complex Care Services aka C.C.S. I'm really hoping for a lot from them and I hope it doesn't blow up in my face. I'm hoping they let Amber get back to eating solids. They can explain the mystery of her mouth (still no teeth), find someone to help her chest and just overall get us plug into more people who can really help her. I've heard great things about them but after all the struggles over feedings we've had with them I'm really skeptical.
I'm not sure where I was going with the rest of this post so I'm going to go to bed :)
The cat has not been shaved......yet
I'll be praying about your visit w/ CCS tomorrow & am thanking God for the encouraging news here.
ReplyDeleteThe way my dogs have been shedding lately (esp. Mak!,) I'd LOVE to shave them too but I can only imagine how really wierd that would look! :)
I cant wait to squeeze your chubby little legs Amber!..and see your smiles, and read you stories and play with you endlessly and spoil you rotten for as long as you are here! Miss all of you today...looking at Ambers pictures and missing you! Thanks for your updates Skye...and thank you for making all the arrangements to come to Pa...cant wait to see you all! Maybe Gramma Collins will shave the cat while you are gone!!! :) Gee....its about 3 weeks away, so she should be REALLY matted by then! Doesnt that sound like fun Jodi????????
ReplyDeleteSkye, thank you so much for keeping us updated on Amber's progress! I am so glad to hear that she is gaining weight and can have less time on the g-tube. I am sure that is a relief to you as well! I hope that CCS will be helpful tomorrow and will be able to give you some answers. You are doing a great job with Amber, Skye! Keep up the good work:) Can't wait to see you in August!
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