This is an update from Mattie’s care page. I am thinking about moving everything over to my blog. Many of you have told me that you don’t like having to log in to read the updates on Care Pages. Let me know what you think.
Thank you to my many friends that have sent reminders to update Mattie’s page. Life has been a little crazy and I am really behind. Steve had meningitis for a few weeks and we have been super busy with the kids schooling. Mattie has had several updates. Hopefully I will remember everything. 🙂 We have started attending private physical therapy again. Mattie enjoys seeing the therapist, but is over doing all the hard work. We are working with a therapist through GVA, and also privately. She is getting a double whammy. The therapists are working with Mattie to strengthen her core, reduce pain, and stretch out her hamstrings. She continues to see the school OT and SLP as well. The occupational therapy evaluation brought a bit of a surprise. Mattie has lost a good bit of strength in her hands since her last evaluation 2 years previous. This alarmed all of us. Mattie’s doctors ordered an MRI to see if she was having some sort of spinal cord involvement. The MRI was clear. We contacted her neurologist to figure out what to do next. She suggested that with all of our unexplained symptoms that we should go to see a molecular geneticist and have Mattie checked for Mitcohondrial Myopathy. We have started the process to get in with a specialist. The process is very involved. They will not give you an appointment until they have looked over all medical records and have collected a complete family medical history. I have submitted the paperwork and hope to hear something soon. If they do decide to see Mattie she will also have to go in for some very extensive medical testing. She will have a muscle biopsy, spinal tap, and lots of other goodies. I am not looking forward to the testing, but it would be nice to finally have an answer. (Mattie is not aware of any of this. If you see her please do not mention it. We will tell her once we know that it will be happening for sure.) We also had a trip to the pulmonologist. I was very hopeful after our last visit that we would be able to stay off of all of the medications we have been weaning off of over the course of the last year. The pulmonary function test did not go along with our plans…. Mattie left with 5 new prescriptions and was a very unhappy girl. It is still hard for me to wrap my mind around the fact that she has asthma. The only place she has had an asthma attack has been in the hospital after anesthesia. The last appointment makes me realize that she really does have asthma and we need to be better about watching her breathing. We will be heading to Philadelphia in Dec. She will be seen at spine, hand, and leg clinic. They keep changing the dates. I will let you know when we are going as soon as they let me know. Thank you for your continued love and prayers. I will update more as I can.