So, the girls first year was filled with all of the regular baby check-ups and then Amelia also had check ups with her neurosurgeon, orthopedic surgeon, and urologist every 3 months. We also started seeing her ENT every 6 months to follow her hearing loss. We had to take her to the audiologist to be fit and followed with her hearing aid, and that was about every 2-3 months. She received services through early intervention, which started when she was about 3 months old. She had a teacher that came, physical therapy, speech therapy, and occupational therapy. Most of her therapy was home based, which made our schedule much more manageable. The girls also slept a lot when they were babies (so much that I often wondered if they were ok), so trying to fit in appointments and therapy in between 3 naps a day presented its own challenges. But, it all worked out and we just kept on pushing through. Other than her shunt surgeries at 3 months old, Amelia only had one other surgery during her first year. It was bladder surgery at 9 months to place a vesicostomy to allow her bladder to continuously drain into her diaper, which would keep her bladder from overfilling in hopes of preventing kidney damage. With the vesicostomy we did not have to place her on a catheterization program as a baby. Things were going well, and we were doing an ok job of adjusting.During their first year the girls were definitely BIG spitters. Both of them would spit up with almost every feeding. Needless to say, we were happy that we had paid for fabric protection on our sofa. Around 9 months old Hannah's spitting really improved, but Amelia's continued and got worse. Her pediatrician was also concerned that she was gaining weight a little on the slow side. After the girls turned 1, Amelia was diagnosed with reflux and we tried several different medications but none of them really helped. She continued to vomit a lot, including her solids. We got to a point that we had to take her off of all solid foods and got her transitioned to Pediasure. During this time she stopped growing. She did not gain any weight for 4 months and she did not grow in length either. When she was 17 months old she was diagnosed as failure to thrive. Her reflux had become so severe that our best option for improvement was surgery. So, in Oct. 2004 she had a Nissen fundoplication (they made the top of her stomach tighter to prevent reflux). She also had a feeding tube placed at that time so that we could supplement her nutrition while she slept at night. By the time she had the surgery and then during her recovery she developed a total aversion to taking food or drink by mouth. She was tube fed only for several months. It has been 4 years since she had the surgery, and getting her to eat is still a huge struggle. We still use her feeding tube to supplement nutrition and fluids, but at least she is not on the continuous pump at night anymore. She is still not able to take in enough by mouth to meet her calorie of fluid needs, but she has made improvements. She has had 4 years of feeding therapy, but we still struggle with her on a daily basis. Out of all of her issues, feeding has been the one that has been the most frustrating for me to work with. She has so many underlying medical issues that could be affecting her feeding, but it is the one thing that we struggle with at least 3 times a day (and then top it off with the tube feeds) and have seen so little progress. I am almost at the point now where I am thinking that: 1- she probably won't go on her first date still eating baby food and goldfish and 2- if she does then he is probably not going to care. (The picture above is Amelia a few days after her surgery for reflux).
Amelia always does things in her time frame and no one else's. I work with her and she has lots of therapy, but I have taken away MY time frame. This has helped me tremendously. As long as I see progress being made I am happy. Sometimes it is painfully slow, but other times she just takes off.
