11 Months Old

This little ray of sunshine is 11 months old! She is still hovering right under 13 pounds and weighs 12 pounds 15 1/2 ounces. She has been eating so much better lately and eats up to 2 ounces per bottle (every 3 hours, 7 times a day) as well as some solids. Two ounces probably doesn't sound like much, but for her it's awesome! Although she's eating much, much better, it's still just not enough to help her gain enough weight even with TPN, so she will be going in for surgery in a few weeks to have a G-tube placed in her tummy. The G-tube will allow us to feed her whatever she doesn't end up eating by mouth through the tube so she'll always get the full amount given regardless of how much she eats by mouth. She is still off the lipids/fats because her liver enzymes have remained elevated, so that's another reason why it's been difficult for her put on weight lately. Hopefully the extra help from the G-tube feedings will help her gain the weight she needs to someday get off the TPN.

At the ultrasound for her liver and gallbladder everything looked okay except that they found some enlarged nodes on her bile ducts. Her doctor suspected an issue with her bile ducts, so this confirms there is something going on there. He has ordered a liver biopsy that will take place the same time the G-tube is placed and hopefully that will help determine exactly what is causing her elevated liver enzymes, her jaundice, her crazy itchy legs, and her pale yellow poop.

She also had a swallow study done the same day of the ultrasound and she swallows like a champ, so yay for good news there.

At the time of her G-tube surgery, they will also be doing a test to measure the current length of her small intestine. When she was released from the hospital back in January it measured at 31.5 cm, so the hope is that it will have grown some. The longer it grows, the more surface area she has to absorb calories & nutrients and the greater her chance of someday getting off TPN, so we are crossing our fingers it has grown some. Regardless of any growth, she will most likely need a bowel lengthening surgery before she'll be able to be taken off the TPN. But as always, only time will tell.

This is Carly's nurse that visits us every other week (sometimes weekly) to draw Carly's labs, weigh her and to test her blood sugar. Carly has been having issues with her blood sugar dropping to really low levels during and while she's off TPN, so he taught us this month how to use a glucose meter so we can keep tabs on her glucose levels.

Although she has a lot going on with her little body health-wise, this little girl doesn't let it stop her! She is totally on the move and is army crawling everywhere. She isn't quite crawling yet, but will get up on her hands and knees and rock back and forth. When she's moving around, we have to keep a close eye on her because of her line. She army crawls to as far as the line will let her go and then we move the backpack next to her and she'll take right off again.

I took this little clip of her while she was unhooked from her TPN the other day to show you her killer moves...

I found the cute mini backpack you see in the pic here and I'm so in love with it! I was excited to find a backpack actually small enough to fit on her back so that once she starts walking she'll be able to carry around her own TPN.

 Carly LOVES to go on walks around the neighborhood. Lilly loves to push her.

This is something I've been meaning to share on here for a couple of months. This is an all about me poster that Bryson created at the end of 2nd grade. I love that he drew Carly attached to her little back pack and especially loved his one wish. He is such a sweet little boy and prays for her to get better every day.

We all do.

I am so beyond grateful for the opportunity to be this little girls mother. She has brought such a special spirit into our home. Yes, she is adopted and not mine by blood, but she is in every way my daughter by spirit and through love. I needed to be this girls mother. I needed to know her special spirit. I needed to be changed by her. I needed to learn the things that only she could teach me. She is such a blessing and I love every piece (& missing piece) of her.

Favorite quote this week:

"Sometimes doing the most important thing eternally – doesn’t look like you are doing anything noticeably."

Life rules!
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