After attending Jordan World Circus, thanks to the Starlight Children's Foundation, @ the Puyallup Fairgrounds...Summer LOVED the ponies, elephants, and especially the high flying acrobatic Ariel princesses (her favorite...she kept saying "printhess, ahh, ahh, ahh (like Ariel's singing) 3-12-2011

Friday, February 20, 2009

Summer's doing great!


Our little beauty is re-growing her hair after rubbing it all off. If you look closely, you can see the 4 long hairs in front :) Yes, only 4!



We had our bi-weekly visit to the GI clinic yesterday. Summer is now 13 1/2 lbs! She has now averaged 1 ounce a day for at least the last month :) WOW! Grow, baby, grow :) All the healthy growing means her intestines are growing too....which means we can keep increasing her food :) All the lab work looked great too. She still has NO sign of liver disease, her body chemistry looks good, and her blood counts/hematacrit look fairly stable.

We met with a doctor that we have never seen before, so he reviewed her history with us. He was impressed with the recent weight gain and commented that she is doing excellent. He feels the 17 CM of intestine she was left with 6 months ago has definitely grown and is performing very efficiently. We also discussed whether or not they would install a G tube (a tube that is surgically placed into the stomach rather than through her nose (NG)). He said they place the G tube in kids who they know will never be able to wean off of TPN, eat normally, and are in need of a transplant. I know this has been the feeling all along, but getting further into her weaning process and still moving forward is very comforting to me :) I guess we can live with that ugly yellow thing up her nose if she can! She has figured out how to pull it out though, so sock gloves are becoming part of her new fashion statement :)

Summer has recently discovered how cool her tongue is


Summer's TPN accounts for about 40% of her nutritional calories and the Elecare formula the remaining 60%. That means we are over half there! :) They also did a fatty acid profile a couple of weeks ago...her levels have returned back to normal. So, starting this week, we are going to cut the Lipids down to only twice a week instead of 3 times :) YEAH! Every little cut-back is great news for her :)

She is cuter than ever :) (of course, I'm not biased AT ALL) Here is a bit of her voice to enjoy...she started giggling this past week :)

video

My little night owl thought 1:30 AM was a good time to chat...ok, I was still up anyway :)

She started yawing at about 2:00 AM...I took the cue and tucked her in :)

2 comments:

  1. Mel- This is great!!! Summer is so cute, I'm glad I get to see her so much.

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  2. She is seriously the cutest, happiest baby ever! I'm glad she's doing so well.

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