The Steroid Monster has made his appearance. It's only happened on a handful of occasions over the past two days, but when he feels his "angry med" kick in, our hands are tied. I have been walking on pins and needles around him, spoiling him rotten in an effort to avoid any fits because they can be so brutal. The littlest thing can set him off - like yesterday when I merely suggested we change him out of his dirty shirt - and then he screams and cries big, wet tears for what feels like hours on end. It's so hard to console him once he gets going. I am relieved he won't be on this for long. The daily dose is much higher than what it was in the past (twice as much), but luckily it will only be for a few more days. Not long enough to make his face puffy or to have the opposite effect on his muscle development like in the past.
On the plus side, I was hoping the new meds would affect his appetite, but so far the only new food he has incorporated into his highly minimal diet of pretzels (only the square ones), lollipops and gummies (only the red ones) is Lindor milk chocolate truffles. I can't really blame him, they are delicious.
Anyway, imagine a four-year old after six cups of coffee. That is kind-of what this is like. He is anxious, he is high-strung and he can't sleep. In an effort to get him out of the house and burn some energy, we joined our friends at their house in Vermont over the weekend. They have four boys under seven years old and Ty was very excited at the idea of spending some time with his friends. Lou and I were excited to let Gavin play in the snow for the first time, too. Last winter the poor guy was stuck inside our germ-free bubble and he barely left the house.
We took Ty to Vermont a couple of years ago, and he played on mountain of snow at the base of Okemo Mountain. When we returned there this year, I was totally shocked when he asked me about it. I can't believe he remembered that. Here he is back in 2009... He was such a beautiful baby.
So, naturally, we had to take him back there. He has been slowly getting stronger and he holds himself up well enough in a sitting position, so we thought he could have some fun in the snow. Unfortunately, it's been a warm winter here in the Northeast so there wasn't a "mountain" to play on, but Ty did try to make a snowman and Gavin had a blast flying into snowpiles and throwing snowballs at us.
I couldn't love these two more. They are my everything. We had a terrific weekend (thank you Charlie and Rachel) and I am so glad we went. Bloodwork tomorrow and again on Wednesday just to make sure his platelets are above 100. I don't think he will need a transfusion this soon, but we need to be very conservative with that just in case another bleed occurs. Poor Ty has been fighting me like crazy whenever he needs to go to the hospital or to the lab to draw blood. He kicks and screams and tries so hard to get away - it's impressive and embarrassing at the same time. It actually becomes a really big deal at the hospital because he tries to rip the needles out of his mediport. I need help from the nurses to physically restrain him and everything. I can only imagine what I am in for when they meet the steroid monster. Oh boy!
Goodnight everyone, and God bless.