This is kid is giving me gray hair…good thing my hair is blonde…too bad for Dustin!
As you know from our last post we are having issues with feeding. Turns out it’s from extreme muscle exhaustion and soreness. We took her Wednesday to feeding assessment where a swallow study was recommended. Took her Thursday to the for the study where they said everything looks fine when she swallows. However, there is a delay in her swallowing. We can keep doing the syringe feeding and work on oral motor skills working our way back to straw and spoon feeding or we can go the G tube route, which doesn’t have to be permanent, while we rebuild her feeding skills. We chose for the time being to continue syringe feeding. Harper’s jaw is staying in place according to the chiropractor it’s just inflamed and sore. We feel much better knowing that she can eat.
FUNNY: once we found out that she could eat properly my mom looked at her and said very firmly, “there is nothing wrong with you so your going to eat and we are not having any more problems with that today!” At which point Harper responded with some ugly sounding babbles and proceeded to eat her meal without any issues. REALLY! There is no doubt her jaw is sore and we are working through that with massage and pain medication but she can eat.
We continue to move forward in detoxifying her body, of the most complex carbohydrate source of corn starch, in an effort to regain some control over her seizures. We also began giving her P5P rather than Vitamin B6 and although the process is slow we are seeing some improvements. We have lost all head control and will be working on regaining that ability over the next few months. However, we have not lost our concept understanding. Although she might not be able to perform the task being asked of her as well as before she still understands what is being asked. This is great!
The research project with Dr Jensen is currently in the final planning stage with experimentation to begin this spring. We are excited about this project because it will impact not only CDKL5 but the larger group of all who suffer from Epilepsy. After our diet trial in Houston it is now more apparent than ever that diet directly impacts Harper’s seizures. So we are looking for ways to address this concern that will help not only Harper but others who suffer from CDKL5 as well.
Thank you everyone for all your uplifting prayers, support and encouraging words and thoughts. We could not get through these times of set backs with out you and we find it easier to move forward in the times of progress with you.