Sorry that is has been so long since our last post…
The Atlanta Trip to see Dr. Kendall went very well.
We have a revised care plan in place for Andrew until we see Dr. Kendall again. Andrew will have his yearly blood tests done soon to look for any abnormalities. Dr. Kendall is glad to see that Andrew is getting to be a little more stable now that he is back on his IVIG again. She will be reviewing his muscle biopsy test results from Baylor soon to see if there can be any other explanation for Andrew’s condition. Also, we discussed the latest test available that focuses deeper into the dna/genes to locate Mitochondrial disease abnormatilites. It is called Exome Sequencing and will also need to be done/sent to Baylor this year. We will keep you posted as we learn more about the timing of this particular test. Dr. Kendall has also recommended that we start using a topical (prescription) pain cream for Andrew’s ongoing muscle pain. His “ice-pick” headaches are continuing so Dr. Kendall has recommendeded that we work on getting an increase in his Gabapentin dosage and possibly adding another medication if necessary. Due to the weakness in Andrew’s hands, she has recommended that Andrew begin using the computer/IPAD more instead of writing by hand. Unfortunately, his pencil grasp has regressed quite a bit due to fatigue, hypermobility and low muscle tone.
On a more positive note, we were able to spend some time with friends in Georgia as well. We were able to hang out with the Stevens family and Andrew’s long time friend Sydney quite a bit. We also spent some time with our friends the Cramers where it is rumored that I fell out of a canoe. 🙂
Thank you so much for making this yearly trip possible.