Sorry everyone for the delay in my update! My computer completely crashed on me and I had to buy a new one! It finally came today, and I can finally update the Janessa blog!! Well where to start, today was such a beautiful day, Janessa has been doing well, but she has been throwing up a lot lately, she has been having a lot of issues where she has been eating her crib, and other wooden objects such as her toys, or her toybox that we had to resort to putting her toys away and have her sleep in her playpen! It's been clogging up her gtube, and we have been having a hard time draining it. It times about an hour to drain her stomach completely at times, but we get it done. It's been pretty hard on her since we had to cut down on her intake.
In her ICARE news that I haven't updated most of you on, Janessa has dropped from her 5 organ transplant down to just an isolated bowel transplant of course with a colon added on since hers is a microcolon! We are just so happy about this because she was put on the 5 organs originally because her liver was failing when she was a newborn, and it's healed! She also has dropped to status 2 on the transplant list, which is fine by us because Caleb and I both decided we were not ready to put our baby girl under the knife yet especially because we feel her quality of life is alright right now. It's hard to make such a decision like that, both TPN and transplant have their pros and cons, neither is a cure, and both have their benefits and risks depending on the child. Transplant will always be an open option for us, but as time progresses so does the success of transplant and modern medicine. We will be going to Columbus Ohio in the next few months to do motility testing to see how her stomach and bowels contract, and if there is any kind of motility medicines out there that might be successful for her. I like to keep an open mind that it might help her out, but I always have to keep in the back of my head that it may not, and not to get my hopes up. Janessa finally also gained a little bit of weight, she is near 19 pounds after being 18 for 5 months! This has happened since we increased her TPN by 2 hours, and continued her GJ feeds. We also started ferrous sulfate(Iron) into her GJ so hopefully we can avoid so many blood transfusions, and get down to this wood eating problem she has.
Janessa still is not walking on her own, but she has shown a huge interest in walking while holding our hands, even with her little backpack on! We are hoping by summer she will be walking, and will be catching up physically to where she should be!
To finish off this wonderful blog post, I would like to say congrats to my dear friend Brianna, she had her beautiful baby boy yesterday on the 13th, and he is just beautiful!!! :)
I will update everyone soon on our next ICARE appointment! <3
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