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.)

It could be (a lot) worse.

That is what I keep telling myself. Every time I'm stressing about meds and numbers and the future. I stop. Breathe. Then tell myself...I could be ALOT worse.
I recently got a phone call from an amazing sweet couple that were clients of mine. He left me a message and when I returned it the first thing he did was ask how maverick was. I of course told him all the ins and outs and updates and then said but enough about that. What's up with you guys! I was thinking they were questioning a print or order ect from our last session. He got quiet for a second and said, "our baby died" every part of me froze and started to hurt. Tears flooded my eyes. I felt selfish for not hearing the pain in his voice that I clearly recognized in that second. After talking to him and hearing his story, I hung up and just sat in the wegmans parking lot for I don't even know how long watching people in and out with seemingly normal happy lives unable to get his voice out of my mind. I've never heard such pain behind a voice. All the sudden I got angry with myself. Everyday I worry about something with maverick or the girls and now they seemed so unimportant because at least they are HERE. So what if he can't play certain sports or has to lead a life a tad different from others...he's here. I get to hold him and hug him, all of them. It could be so much worse. I'm so guilty of dwelling on the negative things and putting the cart before the horse and I really have made a promise to myself to try and not do that. God won't give me more than I can handle. This I can handle.

To the M family...I don't know if you read this but your in my mind, my heart and my prayers EVERY day. I'm so deeply sorry for your loss. I'm here for anything you need.

Maverick had a good week. He is now an official sitter. Which will add some more grey hairs to my head making sure he doesn't roll and fall onto anything leading to a head bump but I can handle that!
He didn't grow in length again. So he's 1% now. He did gain 10 ozs though. That was awesome!
Last week his platelets were 135,000. We decided to cut out his night time dose altogether. That was about a 40% reduction of meds!! I was prepared for a drop this week in levels and it did. Down to 58,000. His specialist said he was comfortable with that though and we dropped another 25% of the meds!! We go back on July 5th. I'll be really happy with anything above 40,000. That's my wish but if it's lower...that will be ok too because no matter what his number is, He's here and he's happy and he adds so much joy to our family everyday.