We had an AMAZING time in Alaska. I'm so thankful and blessed that we were able to do that trip. It was very needed for us and the kids. If only it had lasted longer.
AS soon as we returned I took Mav in for his routine weekly check which ended in a huge number drop and me blowing up on Mahala in the parking garage when she made the comment...."oh great! This is how we get the spend our summer, hours and hours in doctor offices." Then I felt even worse. I try not to take them because it's an hour drive each way and 2 more hours in the office. Somedays though, I don't have a choice, I have to take everyone. I know she's 10. It's hard. It's so hard. FOR EVERYONE. They don't understand and they shouldn't have to! Of course when she thought about it she came and gave me a huge hug saying sorry and so did I.
I struggle so much everyday trying to make sure that everyone gets enough love and attention. That the house is taken care of and then add running a company to that pile somewhere. Something is bound to be missed somewhere and a break down by someone is always 5 minutes away. Please tell me that is normal for every family?!
The hemo doctor is mentioning chronic ITP now, which means he will most likely deal with this forever BUT then they also say that it could go away and be gone for years and years. An acute infection can last 6 months. It's been 3...so stop freaking me out by saying chronic!! I know she's trying to keep me informed and prepared but I seriously can't handle it some days. She also tried to be positive and tell me a story about a 17 year old boy she sees and how normal his life is. That when he wants to play sports he just has to take the steroids to up his count and he is fine. I can't picture Maverick being 17 and still having to deal with this :(
His growth is a big concern for me right now too. I'm sure I'm reading into the side effects of the meds to much but he hasn't gained weight in a month and his height went from the high 60% to 3%. I'm terrified the meds are stunting his growth.
I REALLY want to stop the meds and let his body have a chance to work. I just want to see what it does...every time I fill those medicine droppers I get angry. There is nobody to be angry at but it just gets to me. Every time I rub his sweet swollen little face my heart drops just a little but more. I just want him to have a normal life like a normal boy. I want him to run around and fall without the fear of bleeding. I want to not have that fear every time he will bump his head...I want him to play sports or not play sports. I don't care but I want it to be his choice not because he medically can't.
I KNOW...I'm thinking sooooo far in advance and I know I shouldn't. Somedays, I just can't help it.
So anyway, that is what I want to tell the doctor this week. I want to stop the meds as soon as we can wean him down enough and give his body a chance to work. I know they are going to be worried about not treating but I think it's time to see what happens.
{{{hugs}}} bonnie. <3
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