Last night Annabelle ate Sweet Potato fries for dinner. How fun is that?! They were bitter and absolutely not my taste, but Annabelle surely didn't have any complaints. She dipped her fries into her bowl of Neocate Nutra and enjoyed her mini little buffet of food. I was so proud of her and enjoyed every second of watching her have 'dinner'.
Annabelle hasn't run any fevers, neither up or down in almost two weeks. Yesterday she has started to feel warm again. She was quite clumbsy last night. Her temperature never spiked, but remained around 99 which is very different from her new 'normal' temp of 95/96 lately. We could tell that her walking was becoming more and more difficult for her, she was slipping up and tripping over her own feet a bit more than usual. Finally she dropped to the floor and began crawling around the house. It's incredible how an infants instincts come to them so naturally that Annabelle knew the danger in trying to walk around when she wasn't steady on her feet.. instead of laying down on the floor/couch like she normally would - she used the energy that was actually carrying her through the afternoon and decided to simply crawl around continuing to play.
I enjoyed company last night and sat in her floor with two wonderful girlfriends, both of which have children with special needs. They are two beautiful women that have been some of the biggest resources to me and my family than I could have ever imagined. The three of us sat on the floor together and shared stories and insight as I watched my little girl enjoying life in the best alternative way she knows how. Many times she was walking and many times she would crawl, but the entire time she wore a smile and it was so refreshing to share a happy little girl with friends.
Annabelle was up again last night, unfortunately. She isn't comfortable at night any longer.. it's becoming more and more difficult for her to get to sleep and stay asleep during the night. We are making sure to give her medications soon before she goes to sleep so they should be carrying her through the night, sometimes she needs a cup to calm her tummy (when she doesn't have food on her stomach, she hurts.) and then other times I can't tell if she is in normal 2yo pain from cutting molars, etc. Annabelle is allergic to Tylenol so that isn't an option. If I give her Ibuprofen, her temperature drops and struggles to rise again. We've been offering Ibuprofen while we keep a close eye on her and it seems to be helping at the hardest times.. but that much Ibuprofen in your tummy also isn't good. It's a Catch 22.
Endocrinology called this morning with the results for Turner Syndrome; a genetic condition in which a female does not have the usual pair of X chromosomes.
The chromosome study we performed 3 weeks ago determined it was negative. Another bummer :(
Dr. Frances would like to see Annabelle again every 6 months unless something changes or a diagnosis points us back towards Endocrinology. We will be watching her Growth Rate closely for both bone structure, height, head growth and will continue to do Bone Age Study's at that time.
It's another day of discouraging news for us. It's quite sad and depressing to wish for a positive diagnosis for your child, but we are literally to the point we just want answers. Badly. Answers will bring us to opportunities for how we can help Annabelle. A diagnosis will help our family adapt to whatever has been placed in our lives. A diagnosis will allow our doctors to determine the best team of medical geniuses that Annabelle will need. A diagnosis will bring so much to our home, we pray it will be here soon.
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