(Grayson is 19 months old today, and I have his letter written and ready to post, but no pictures. Poor little dude is sick today and I didn’t really want to put pictures of him screaming or sleeping on the post, which is all he’s been doing today. So if he’s feeling up to it, we’ll try for some pictures tomorrow. So anyway, Happy 19 Months G-Man!)
The following is an email I wrote today with details about what’s going on with Grayson.
I wanted to let you know what’s going on with Grayson and ask for prayer for a few specific things. Please feel free to forward this on…
We had our first appointment with the Mitochondrial Disease specialist Friday morning. She did diagnose Grayson with Mito based on his muscle biopsy results and recurrent abnormal lab results. There are many different types of Mito, and we don’t know which type he has yet- hopefully the genetic testing will show the affected gene. We will get those results late June.
The specialist does want to test Grayson for a specific type of Mito called Leighs Disease. The prognosis of kids with Leighs is very poor- most of them don’t survive longer than a few years. Our neurologist ran a blood test for Leighs a few months ago, and we thought we had ruled it out. We did rule out that it couldn’t have come directly from me, but it could be a combination of both me and Ryan, or could occur spontaneously. The specialist is concerned for Leighs because Grayson’s symptoms presented so early in life and his developmental delays are so severe.
Leighs Disease causes lesions to form on the brain, so the doctor ordered an MRI. She also ordered a list of other tests: spinal tap, EKG/Echo, a sleep study, and more bloodwork. We were able to get some of the blood taken yesterday, but Grayson’s veins weren’t cooperating so I’ll have to take him back Monday to get the rest. She also wants us to see an immunologist and ENT, and has increased the dosage on his supplements and added a few more.
We asked the doctor her opinion on whether Grayson will ever walk and talk. She says because he is doing a lot of good things right now (he bears weight on his legs and has started getting into the crawling position) he may walk someday, probably with assistance from a walker of some sort. She doesn’t think he’ll ever communicate like we do, but may learn to say a few words. Of course we know doctors don’t know everything, and we won’t put any limitations on what God can do for our child.
The hardest part of all this is it will most likely be a few months before we find out if he has this disease or not because of scheduling all the tests and waiting for results.
Please pray for the following things:
- First, we want to boldly pray that Grayson does NOT have Leighs Disease. We want Grayson to have a long, full life.
- Pray for peace as we wait for the testing to be scheduled, completed, and the results to be given
- Pray that the genetic testing we are having run right now shows the gene that is defective. This is important for several reasons. One, it will give us prognosis for Grayson as well as possible treatment options. Two, if we know the gene that is defective, Ryan and I can be tested to see what our options are for future kids.
- Pray that Grayson’s body gives him some peace. He’s been having a lot of seizure activity/clonus lately and has been waking up at night crying in pain. He is also sick right now- we are praying it doesn’t turn into anything more serious- G doesn’t get sick a lot, but when he does, it takes him forever to recover.
- Pray that Grayson continues to progress- he is doing some great things right now- getting a lot stronger and getting into the crawling position. He is also working with a new OT and is working hard at learning to eat by mouth.
Thank you so much for all you have done for us and for your prayers. We are so blessed to know each of you and to call you our family.