Yep. Today was a big day for us. We decided to take Mav off the steroids! I'm so excited and so nervous all at once.
It's been a big month. We made the doctor switch. Moved Mav to children's National in DC. I'm very happy about that. From day one they seemed to be much more on the same page as us and by that I mean, step one...OFF MEDS.
What have we done in the past month... A lot! We weaned the sweet boy down to a small amount of meds. Each week before heading into his CBC draws I would start to panic. My mind seriously can't focus on anything at all. My heart beats like crazy. Fearing that each drop would drop his number as well. He's managed to stay steady between 34,000-45,000.
We had two close calls with petechiae.
(petechiae is a small red or purple spot on the body, caused by a minor hemorrhage)
I say close call because the only time I've ever seen them really was when he was at 3,000 when all this started. So now we are learning that he can have some petechiae and not be super crazy staying in the hospital low.
We had his first eye exam that included dilating his pupils. This was to check for scarring behind the eye that could be a sign of a congenital virus. His eyes were perfect though!:)
We had an appointment with the infectious disease doctor at children's. All was well there too!
On top of all that...Mahala gave herself a very impressive black eye while working on cheer tumbling that has now formed a small hematoma above her eye. Then solana fell and ended up with 5 stitches and two loose front teeth!
During one week last month we were at 8 different doctors and two hospital by Thursday! That's just how we roll I guess.
Where are we now is what matters though. Today we are med free. Now we wait and see what his body does and they started to test for some other things today. They will likely do this each week to rule out things. (unless he makes a full recovery all the sudden, which I fully expect. No pressure Mav.) You can't take too much blood from a baby so it's a slow testing process. His white count has dropped some which scares me. I just pray and pray and pray that his body resets and this really is just ITP. A long case of ITP and not something bigger and this is just symptom one.
He is trying very hard to crawl right now. All the girls were already crawling at this age but I'm ok with him not. Less chance of bumping his head...ect. It's a total super cute army crawl. He can't get up on his knees yet (another side effect from the meds...bone issues). He loves his walker. It takes him an hour but he will get himself to the fridge and throw every magnet on the floor and then flash me the biggest smile.
He has lost a TON of swelling in his face and gained permanent stick marks in his heels.
I know it sounds like alot of insanity but it's our life. It's made us stronger and closer. I love watching all the kids play and bond. The girls become more protective of each other everyday.
I love that I have supportive friends, family and neighbors that help us with doctors visits. I love that I still manage to find time for work. It's my outlet. It helps me.
This video will give you a good dose of the "crazy" in the house. Never a dull (or silent) moment...
And this one...oh how I LOVE that laugh.
