The past two weeks have been crazy. Piper had an EEG, Swallow study, visit to the ENT, GI and will visit the Neurologist today. My nerves are running high today. We will be discussing the results of the EEG and since she did not have a new seizure during the study we know there won't be a lot of new information. We will be deciding what medicine to try next. We have already done our research and know what we want to do. We will also be expressing our concerns with our experience at this office so far. To say the least we are extremely disappointed. In my opinion the neurologist is the top dog when it comes to Piper's well being. This person should be able to be our guide and making suggestions and decisions for us. We are not doctors and are growing tired of making all the decisions. Piper's seizures have increased a lot this week and we are very concerned. We need the doctor to share our concern and act quickly. After going to the conference and speaking with parents about how awesome their neurologists are we know that there is room for improvement. If it means going somewhere else, then we go.
We did have some wonderful news after Piper's swallow study. Back in November her first study showed that she aspirated (breathed in liquids) and we had to thicken her food. Now it shows that her muscles have gotten stronger and she no longer aspirates. This is amazing!!! I was shocked and asked them to check again. This means she can start speech therapy and learn how to eat new foods. This also means that those dreaded feeding tubes won't be needed right now. I pray they never will.
We met with the ENT to get established just in case. They checked Piper's hearing and she has no problems there. Once again, great news!
We also met with her GI for the first time. GI issues are second to seizure control for girls with Aicardi. Feeding issues are normal and most girls are on feeding tubes. Another issue is constipation which can also lead to feeding tubes if it cannot be managed. Piper will be taking a mixture of medicine and pedialite to help her be more regular. She will also be doing a barium colon study next week to make sure her colon is working properly. The doctor said, she is a plump little doll...looks like she is eating just fine. Once again I pray she continues to be a good eater.
Piper is now eating normal foods and seems to be getting used to new formula again. She is still not very interested in most solid foods but likes apples and avocados. She doesn't seem so fond of vegetables, she may have inherited one thing from me. We will have a speech evaluation sometime soon so we can get started with speech therapy to help her learn how to eat new things.
Next week Piper will be getting fitted for braces for her stander. We have ordered some equipment for her but it takes a long time to process the orders so there is no telling when we will get the stuff. One of the things we have ordered is a special needs car seat which we need very soon! She has just a few weeks left in her infant seat so hopefully we can get the seat soon!
We celebrated Justin's birthday on the lake last Saturday and had a great time. Piper seemed to enjoy being on the boat and having the wind in her hair. We also learned that a life jacket is an awesome tool to support her when sitting. I will be adjusting one to make it a little more comfortable so we can use it at home!
Thanks for reading and supporting us!