Some good, some bad this week...

On a good note: I have Alex's feedings up to half the rate they used to be. For 2 weeks I couldn't get them past, one fifth the usual rate. And we are back to full strength formula instead of cutting it with sugar water. He is starting to gain back some of the weight he lost.

We also LOVE the stroller. We are so happy with it. It would have been really upsetting to spend that much money and then not be crazy about it so we are glad to like it so much.

We only have 2 weeks until our appt with the mito specialist. I am anxious to gt this moving along!

Now for the bad:

Alex's therapist (who most of you know we LOVE) is leaving his therapy center. She is going to a new center, but it is private pay. We are talking to Elizabeth and trying to decide what to do. Her and Alex have a great relationshi​p and he has come so far with her. Besides, I really like her too!

Still no word on the medicaid program. I am hoping to hear soon. I could really use the financial and time break right now!

Thanks for all your prayers and support.

Ali

I think I confused some people with my last post! I forget sometimes that not everyone researches medical stuff everyday! There are over 100 mitochondri​al disorders. They only have DNA testing for the most severe/been around the longest. Alex doesn't have one of those. He most likely still has a mito disorder. However, they wouldn't talk about/sched​ule the muscle biopsy until the DNA results were back.

Alex is finally starting to seem more like himself. After 2 weeks of being fussy, wanting to just lie around, watch tv and sleep. The last two days he is back to playing and acting like himself. After talking to a couple of other Moms, it seems like a lot of these kids were having trouble handling the cold weather. The way one of the more experienced Moms explained it, is that where "normal" bodies just regulate our temperature without much issue, for kids like Alex it is really hard on there bodies to keep temps in the right range so it takes what little energy he has to keep warm instead of playing, etc. Hopefully, that makes sense.

I wanted to thank everyone for your continued prayers and support. They really do keep me going on the hard days.

Most especially I want to thank my "sisters" on this journey-Mar​iah and Janette. Without you guys I don't know where I would be. Thank you for always being there to share my laughter, my fears and most especially my tears. God brought us into each others life so we could support each other when no one else could. It is so nice to know I have you to call and not explain how I feel you just know. I love you girls more then you know.

Ali

DNA testing is normal! Which is what we expected. It tested for 7 of the most severe Mitochondri​al disorders. (Kids with strokes, seizures, significant cognitive delays, etc)

At least we can move on now.