Yesterday morning I took Harper to her therapy session even though I knew it might not be a very productive session. I mentioned we were having feeding issues and the therapist began to feel around and evaluate Harper and said I think she might have TMJ – “Lock Jaw.” She spent the session teaching me how to massage Harper’s jaw and low and behold she began to open her mouth. Her seizures have been so intense that her jaw either locks open or closed during the seizure so this makes since that there would be pain associated with that area. It was not that Harper didn’t want to eat it was more that it hurt for her to open her mouth to eat. Now we massage her jaw during the seizure and have had much better success at eating and relieving some of her pain she was unable to tell me she was having.
Last night I was able to speak with the doctors from Houston and their plan is to admit Harper to Texas Children’s Hospital in Houston on Sunday and begin a somewhat modified Keto diet a ratio of about 1.5 to 1 and have her evaluated by the Metabolics Clinic. This is the opportunity we have been searching for over the last 10 months but because she has seizures no Metabolics doctor would see her. Thank you Houston for your creative way of getting her seen by that department quickly! Unfortunately, this means I will be spending a week 5 hours away from my family 🙁 Visitors are welcome! Not sure I’ll be looking my best but I’m happy to visit anyway!
Now here is where the timing comes into play big time……earlier this week I decided to search our local medical school for a BioChemist willing to give me a layman’s rundown on the digestive process of carbohydrates only. I was able to find a research professor who studies in mouse models metabolites of simple and complex carbohydrates. He is willing to see me today at 3pm! This will provide me with hopefully, useful information needed when discussing Harper’s situation with the Metabolics Team at TX Children’s next week.
I am not sure if any of this will lead us anywhere but I can certainly see God’s hand at work, as always, in coordinating things for Harper! We feel so very blessed to be able to take advantage of these opportunities. Dustin will be managing the household and his job for a week with the help of my parents and his in managing Lily’s activity and school schedule. If it were not for our extremely supportive family and understanding by our beautiful daughter, Lily, none of this would be possible for Harper. Thank you!