Isaiah is BAAAAAAACK to his normal crazy self. It was sooo good to see him back to his rolling self into everything. After nine long days, it was really getting to me. Although this morning he had an episode. He got up and bathed and dressed which is typical and he was on the floor shivering and turning blue. He was hypothermic. Okay, it is summer, RIGHT...... We had to dress him in sweatshirt and pants, socks the whole nine. I believe it is related to his autonomic system. Crazy thing is him and Avery share rooms and Avery is a sweat bomb constantly and he sleeps with a fan and AC and Isaiah is always cold. That's a tough one. One is overheating and the other is hypothermic. LOL

So we went to the pulmonologist today. I was so looking forward to this appt. Have no idea why I do this anymore b/c it is more of the same. They have no idea what to say except chalk everything up to Mito and ask me if I have a DNR and send me on my way and tell me "What a good job I am doing".

Depressing huh,

Here's a laugh. I told the dr. that I had another child with mito and apparently she forgot b/c she ask me if that one was "Dead" I answered her once I picked my mouth off the floor. I was shocked but me being me, laughed it off. Also she said that his respiratory issues are basically a process of the mito b/c he is so low toned and has no energy and we are doing everything we can for him. Apparently, he is taking very shallow breaths and it showed on his xray and the right lung is smaller than the left (not sure what that means but it can't be good). She also said that I do such a good job with him and that she would have lost it long ago. Nice huh, not what you want or expect to hear from a top dr. What I get this all the time.

Basically drs. have NO idea what to do with these kids and this is why I basically manage their care myself. No more unnecessary appts. I NEVER learn anything and they are a complete waste of time and money.

I am not sad or devastated b/c I know is just is what it is but it does suck. We just do the best we can and i am soooo blessed to have the wonderful nurses I do, they are keeping my boys alive and well.