So close yet so far away.

Yep. That's us. We were soooo close I thought to being over this. For 3 weeks my little man held on strong. His platelets stayed around 50,000. I know that is far from the 150,000-450,000 normal range but at 50,000 we are out of the crazy scary bleeding zone. So 50,000 even with dropping his meds each week. I'll take it!! We were one drop from being off them and we dropped to 23,000 :( my heart sank so much hearing that number. Then having the doctor tell me I had to jack his meds waaaayyy back up again was even worse but I have two choices. First, say no and put an infant that is starting to move and crawl at risk for brain bleeding with even a minor head bump or pump him full of meds that are stopping him from growing and weakening his bones and immune system. Those are some SUPER crappy options.
We are one month away from him being considered chronic. I don't know why I'm so bothered by the word but I am. It haunts me. I know that even at a year this could finally just go away but then again being labeled chronic means that it couldn't. It could be worse...just gotta keep telling myself that.
So after his drop last week and the looming 6 month mark so close I decided it was time to do something else. I am SO SO blessed with my job and the people it brings into my life. Amazing people that care and want to help. A doctor client of mine got us in contact with another hematologist and we are having Maverick seen by someone at Childrens in DC next week. I'm so happy about this. I'm trying to prepare myself for the fact that they may not tell us anything different that we don't know but there is that small hope that they will. Maybe something someone missed. Another treatment option. Something. I'm so desperate for a different treatment.
After talking to an endocrinologist this week we confirmed that the reason maverick isn't growing is because of the current medicine. One doctor gave me the example of Gary Coleman and of course I completely lost it and became a blubbering mess. That is the extreme and he was on large doses his entire life and well actually that was a horrible example to tell a worried mother now that I think about it again. The steroids basically block the body from producing the growth hormone. So as long as he on this medicine he probably won't grow. So this week his current doctor moved his meds to every other day. This will atleast allow his body to produce some growth hormones which made me really angry because if that was an option why the HECK did we wait so long??? Yes. I can't wait for a new set of eyes to look my baby over.
(This one picture makes me smile so much. I have 3 blankie babies. Coco LOVES to hold Mav and the other day I found them both sitting so quietly nursing their blankets together. Love watching them grow and bond.)