Trace, Mom and I had a busy day yesterday. Trace had two therapy sessions, we stopped by CMHH to donate toys to Child Life and then on to Dr. P to receive the flu shot. Sounds easy right? Only a few small ups and downs on our little roller coaster we call Life.
First occupational therapy. Quick history - Trace didn't receive any therapy the month of December. Due to being in the hospital, doctor's appointments, and Christmas break. After his OT session, I asked how he was doing. Much to my surprise, I'm told Trace has regressed all the way back to when he started last summer. He would need OT more than once a week to even try and get back to where he was. If he could get back to that point. Trace's muscles have very low tone and are very weak. I was blown away. What?? How could I have not noticed such a bad regression?? More than once a week is just not possible for us as this is very expensive private therapy which is an hour drive one way. Trace has always had very weak/low tone in his muscles - thanks a lot Mito! I feel like she is just giving up on my baby. I wanted to cry and almost did. You never want to hear your child will not be able to succeed at something. Our family works very hard to give Trace the most out of life, one in which he can thrive, one with the least suffering and most importantly the most love. I'm still angry about all this and will take some time before I try to resolve all this with his OT. Thank goodness I was able to retract my claws yesterday and keep my composure. I don't think she quite understood how hard that was for me to achieve :-)
Second speech therapy. This went really good! Trace's speech has been developing well, with NO regression, Yeah!! Still can't pronounce some letters, but we're making progress, and that's all that matters to me. HaHa Mito - we're beating you at this one right now!
Third Child Life donation. After Mom and I discussed the awful OT visit and how we WILL fix it, we arrived at CMHH. It felt really good to give this donation to Child Life, especially after the blow from therapy. The Child Life staff at CMHH are amazing people. They do really great things to make sure the kids who are inpatient have the best stay possible. They are also there to help the parents and other family members cope with everything. We really appreciate everything they do for us when we are there with Trace. Now there will be quite a few more toys to play with because of Trace!
Fourth the dreaded flu shot. After much deliberation, and a few doctors insistance, I decided to give Trace the flu shot. His neurologist/epileptologist and I discussed a new "plan" to try and relieve Trace of the high fever and seizures he experiences after receiving a vaccination. I'm happy to report the plan worked! I won't lie, I was very skeptical. Dr. P, his immunologist, came in before the nurse administered the shot to give me a hug for support - not sure who needed it more - her or myself :-) Dr. P left and I dosed Trace up with extra Klonopin and Advil. Poor little guy saw the needle on the table and freaked. I always try to make sure he doesn't see what's actually going on, although he's smart and figures out real quick it's not good. So after the nurse, Mom and I held him down, it was done. Weak muscles huh??? Only a few tears shed from my little Mister, he always has amazing strength. Then the 1 hour wait began to see if a reaction would happen. Trace acted like a crazy person for the entire hour. Advil always makes him a little wound up and crazy. It relaxes most people, but Trace isn't like most, he's Trace. Dr. P came back in to check on him and sent us on our way, hugging me one more time while laughing and telling me not to call her if things get bad and Trace had to go to the ER. I of course told her she would be the first phone call and we laughed and went on our way. Trace finally fell asleep after stopping to get some french fries on the way home. He loves french fries! Not exactly a super food, but Trace seems to think so. We arrived back home at 5:00. What a long day! Later that evening, I gave Trace his meds and nervously went to rock him to sleep. His seizures are always worse when falling asleep. No big seizures though - whew! Just my little boy flailing around like a crazy person again after another dose of Advil. He didn't sleep much, but I'll take no sleep at home over no sleep inpatient any day.
A highlight of our day. We were able to visit another mito family while at the clinic who we rarely get a chance to see. It was really nice and they have the sweetest kiddos ever! You know the kind - the ones who at first sight you just want to wrap your arms around and hug. One of their children is going through a tough time right now. Please pray for her and her family. They are one amazing family and I'm blessed to know them! Thanks again Mito - without you we would probably have never met some of the most special people in the world.
Hope, Love, Courage &Faith,