Hello!!!!

I know it's been a long time since I have last blogged. I think we have been caught up living a normal life that there hasn't been a need to blog. Rick and I have been lucky enough to go on mini vacations (separately of course). I went to Martha's Vineyard for the weekend and to another part of the Cape last weekend. We have even gone to the Red Sox together and Ness and I have been enjoying time on a boat at a friend's house on the lake. So you see, all " normal things" that we were never able to do. It is truly amazing what life is like when Avery is not in the hospital. He is continuing to break records!!!! Next week will be four months hospital free, the longest ever in his life. I just feel so so blessed right now. Since I last posted, that little boy Zach lost his battle to mito after only being on hospice for less than 48 hrs. And Miss Eithene is still fighting and obviously God has a plan for her. Please continue to pray for her family, I cannot even begin to imagine how it is to see your baby at the edge of heaven's gates for this length of time.

While we have been living a normal life for the most part, it has not been without it's struggles for the boys. Isaiah's cycle are at an all time low. He has been having migraines every Thursday and Sunday which last a couple of days. So basically, he has 3 good days of the week. Not good at all!!!! We saw his mito dr. on Tuesday and she changed a couple of meds but she had little hope that we would ever cure him of this :( so so heartbreaking. On the plus side, she was thoroughly impressed with how strong he has gotten. She actually look up his labs from his last visit which shows how much mitochondria he lost from his depletion disease and he has 65% which she thought was great. This crazy boy has defied so many odds with this disease, it's such a blessing.

Avery has been dealing with increased apnea spells which are really scary. He has his days that have been horrible respiratory wise. I swore he would be inpatient but the next day he wakes up totally fine. We did have to increase his home bipap setting and switch his masks (due to skin breakdown). I am a little nervous that one of his nurses who is aggressive respiratory wise has left to Africa for 6 weeks. I'm just hoping we can all work together to keep him home for the rest of the summer and break more records. Other than that he is doing awesome. I did ask my mito dr. About the experimental medication for kids with Leigh's disease ( which is what Avery has progressed to) but she is not sold on it yet but will look into it more. But she is finalizing Avery's Disney wish trip. Hopefully we will have a date soon. We are nervous but excited :).

Guess that's it for now. No news is good news!!! Hoping our life continues to be drama free.