I can officially say it has been three months plus that Avery has been home from the hospital. Over the past week I have had such mixed feelings about this. Anywhere from joy, fear, to sadness. I am so thrilled that this is the longest he has made it home since he was a newborn. Fearful that the next stay could be a "major illness" type of stay. And sadness, while I am rejoicing my boy being home another mito family has laid their sweet boy to rest while another family is awaiting the day their princess leaves them.

We have certainly had a few hiccups in the past week but thanks to my nursing we are still home. Last week we spent the day at Children's because Avery's central line was pulled pretty bad. Thankfully it was still in place and he was able to go home with a functioning line. Also he has had some pretty bad respiratory days. One of his nurses that does a great job with stabilizing was on edge that he would surely end up inpatient. Somehow she was able to turn him around. I am nervous though because she is going home to her country for 6 weeks (in July). Just hoping we can all keep him healthy and out of the hospital. It is nerve wrecking though. Guess I am being a bit selfish!!!!

Isaiah, poor kid. He has been having the worse time with his cycles lately. He has been retching about every 4-5 days now and they last about 2 days. Add that up and it equals a pretty crappy summer. I honestly cannot figure him out after all the years but I do know it breaks my heart. We are seeing his mito dr. In two weeks and I am just hoping she has some new ideas. Although I know that over the past 6 yrs. We have run out of options. It just really sucks.

So while we have been enjoying life at home, it is far from boring. But I'm just happy to have my boys. Please continue to pray for these families.