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 :)

Wednesday, February 18, 2009

Summer in a nut shell..or at the nut house? You decide.

Well, Summer has graduated to getting her own blog....what a big girl she is. Little does she know, it is just because she takes up most of my blog entries and it is easier this way :) Besides, then my other kids won't feel bad if I take too many pics of her :) Gotta protect that whole sibling rivalry vibe! As you can see, I played mommy photographer/paparazzi again...enjoy :)

At this point, Summer just turned 7 months old and now weighs 13 pounds. She has had a few set backs, though minor ones. Last week she spent 3 days in the hospital with diarrhea again. She had been there for 8 days at the first of the year for this...though this time it was because of a stomach bug or something. They tried to grow all kinds of cultures, blood and stool, and nothing ever grew. After 3 days of getting rest and re-hydration she was good to go again. Ever since she has done just great.

She still runs her TPN for 20 hours each day with Lipids for 3 days a week, but this only accounts for 30% of her total calorie intake. The rest of her calories are obtained through her NG tube on a continuous drip running 40 ML's per hour. We also give her a 1 ounce bottle 4 times daily to get her used to taking a bottle...and squeezing in a few extra ounces!

A few weeks ago, her doc told me her labs look great and she shows no sign of liver disease. Besides the need for an intestinal transplant, alot of SBS (short bowel syndrome) kids require a liver transplant as well. Being soft tissue organs, these are two very risky procedures and having the liver damaged makes things very bad. Fortunately for Summer neither is the case so far. The docs feel she can work her feeds up to the point of getting completely off the IV and just rely completely on food/formula. When this happens, the risk for liver damage will be eliminated as it is caused by the TPN/Lipids in the blood stream on a constant basis. I was also told by a nurse, this last time she was in the hospital, that it is incredible that as small as she is, she can maintain her blood sugar for the 4 hours she is off the IV each day. Most SBS kids on an IV run for 24 hours each day....so constantly, hence the liver damage risk is increased greatly.

We feel blessed each day she is here. I often fall asleep holding her in our recliner and fall asleep half the night, occasionally waking up to look at her cute little sleeping face. Losing her sister, Brooke, and having Summer in our lives despite all the obstacles we have been and will face, has made us realize just how precious life is....and that we are so lucky to have our kids on loan from Heavenly Father :) Okay, this does not make me the perfect mom, I have still been known to yell and nag like the best of us! Perfection is not in my near future, I guess :)
We have an appt. at Children's this Thurs for lab work and a weight check....let's hope she has chunked up some more! She has managed to gain 4 pounds since Dec 30 :) As always, thanks for keeping her/us in your prayers :)

And the chunkin' up has begun....