I spent the morning making some phone calls. Someone refered us to the UMDF organization and they sent me a huge email full of tons of information. They referred me to some doctors in our state as well as a support group. They also gave me tons of information and great websites and such. So I started calling the doctors on their list. Eli has an appointment with a specialist in Kansas City on January 31st. He is a genetic doctor who works with Mito kiddos. He comes with good references. This will be our 1st stop. If he isn't able to do what is needed we will head to Atlanta. I'm anxious for the appointment. They put us on their cancellation list but no guarnatees that we will get one. A month wait for a specialist is good, but I wish it was yesterday.
We do in general have a busy month. Eli has an appointment with his new neurologist, his pulmonologist, his GI doc, and he has 3 therapies each week. Oh and it's also his hearing test. Oh and his overnight PICU stay for CPAP.
I'm nervous about this month ad I know it's going to be another emotionally draining monh, not that this entire last year hasn't been emotionally draining in itself.
Eli has been trying to figure out how to crawl. He is getting up onto his hands and knees and is slowly barely moving forward. He can get 2 small scoots forward and then he's exhausted. Each week he seems to tire a bit faster. They've watched and checked and monitored and tested. It's not his heart and it's not his lungs. Both docs are positive that it's not those 2 organs causing the fatigue.
He had an increase in drainage yesterday morning and a touch of blood in his extension. He did well during the day with no more issues. By last night was super fussy and cried quite a bit. It took quite a bit to get him to sleep. He woke up this morning with a low grade fever and crying alot He's done decent today but now is fever is increasing a bit again. Go figure.
The older 4 are good. Emily is over at a friends. The other 3 are playing games and snacking on Pez. Bob is at work again today. I seem to be having allergy issues or getting a head cold...not sure which one yet. Either way I feel like crap.