Well, I kept on thinking I would manufacture some extra time. HAH! So, I will have to give you a quick update instead of making my entry be long and drawn out and full of fun!
Back to last week (the really busy one)...
Then at school they had a "Birthday Walk" where they sit in a circle and talk about Murphy and what he was like and what he could do in each picture, etc. It was darn cute. Murphy made his own "birthday crown" and they took 5 walks around the earth (a globe) to show how old he is. I'm not doing a very good job explaining it, but it was very cute.
Harlie had a Feeding Clinic appointment on Thursday, May 14. She FINALLY gained some weight! She has weighed 24 pounds since September. Since the blenderized diet didn't work, I upped her volume hoping to at least stretch her stomach to help with the volume issue. Well, it certainly helped with the weight gain! She gained 1 pound, 12 ounces and now weighs 26 pounds! WooHoo!
After talking with the nutritionist, we decided to try to wean her from her specialty formula (Peptamen, Jr., which is already broken down so much to make digestion easier) to a more "normal" formula called Pediatric Compleat (something closer to a blenderized diet). We're in the process now and it is going okay, I think. I've come to the conclusion that she's going to vomit, regardless. Which is a bummer and another hurdle for us to cross later...
On Tuesday of this week, Harlie had speech therapy and wore her speaking valve for over 30 minutes total. I was so happy. But, she hasn't let me put it on her since. Ugh. That girl...
And her feeding therapy has been going well, I think. The most she's eaten in a single session is a total of one ounce (30 grams). Which is great! But, today she did terrible and only ate 8 grams during each session. Ugh. Again - that girl...
Cooper is now pulling up to a stand all by himself. Tom walked in his room yesterday morning and there he was standing in his crib like a big boy.
I have much more to write about, but instead I will just leave you with some quick photos I took this morning.
3 comments:
Oh Christie. Beware of the brownie batter poops. I hope Harlie does better on it than Ainsley did. We also experience a lot of inconsistency in the areas of eating and capping. The PMV is fine since her fundo. It is a roller coaster that I can relate to. I'm sorry. It's not easy.
Wow..how much has Cooper grown? He looks like a little toddler. Harlie has proven time and time again to us that she will do things when she is ready..when you least expect it or out of the blue..so..you are the mom with the most patience I have ever seen..continue to have it because Harlie will surprise you one day and probably just start saying words...love to all.
Wow. Doesn't time fly by? I have days where I can't believe my oldest is 11. It feels like it was just yesterday I was holding her in my arms and rocking her. Even with Maggie she'll be 3 in August.
Way to go on the weight gain! Its not bad enough our children were born with VACTERL and that in itself puts them in the minus when it comes to growing and gaining weight.
Have you ever tried Elecare? Its a formula that is more broken down then the Peptamin Jr. Maggie is on the Elecare and it seems to help. Plus it has MCT oil that helps with gaining. It may sit better in her stomach since the proteins are so broken down that it really won't sit in her stomach.
www.caringbridge.org/visit/margaretreed1
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