Tonight, I’m exhausted and feeling pretty defeated. I really try not to dwell on the negatives of our particular situation, but I also want to be transparent and admit that
sometimes a lot of the time life with Grayson is really hard. The day to day challenges as well as the fear of what his future will be like are difficult to deal with, and sometimes just seem to beat me down temporarily.
Poor Grayson has had a pretty rough go the last few days. After his seizures last Friday, we saw his neurologist for the results of his EEG, which was more abnormal than his last one, 10 months ago. This is discouraging because it’s more evidence that his brain issues are getting worse. Dr. R upped his seizure meds dose again.
The main reason we had the appointment was to get G’s Botox injections. He got 4 injections, 1 in each leg for stiffness and 1 on each side of his neck to try and get his excessive drooling under control. Grayson was already crying before the injections, and of then of course they made him hysterical. It was awful, but we made it. So far I have not seen any difference/improvement.
Wednesday, Grayson had PT and screamed throughout the entire session. We couldn’t do a thing with him because he was so upset. The only thing that calmed him was his swing, which has a 25 pound limit. G is 24 pounds. I am seriously panicking inside about the day where he can’t use the swing anymore.
Thursday was a really great day. Grayson went to school and had a good day. The news that he LOVED music therapy (they said he laughed during the session and got to “play” an instrument) was about the highlight of my week. I also spent the day with my friend and her kiddos, and had my monthly Mito Moms dinner that night which was great.
Friday morning Grayson woke up irritable and fussy and then fell asleep 15 minutes before we were supposed to leave for school. By the time I got him there, we were late and Grayson started up with the crying again. I could not get him to stop crying and it just escalated into hysterics no matter what I did. I couldn’t leave him like that so I put him back in the car and took him to Target for a little while. When we got back to school he was still fussy, but I was able to leave him and his teacher said he had an ok day.
My sister in law Hannah and I picked him up from school a little early and we drove 3 hours to my parents’ new “ranch”. They bought a gorgeous property a few months ago in East Texas that is 39 acres and has a house and a guest house. This was the first weekend that some of our family was going to stay and G and I were supposed to stay until tomorrow. Ryan had to work this weekend, so he couldn’t come. My mom had bought G a pack n play, an excersaucer, play gym and some toys, so he should have felt right at home.
I don’t know why I think traveling anywhere with Grayson is going to be different than it always is. He does NOT deal well with change and new environments. It’s like his brain just can’t handle it. Grayson did 2 things this weekend: cried, and laid on the floor and listened to Veggie Tales. Lots and lots of crying. Saturday morning he woke up hysterical at 6:00 and didn’t stop crying until 8:30. I was so worried he was going to cause himself to have another seizure. THANK GOD for the weighted blanket– several times it was the only thing that calmed him down.
Last night he woke up all night crying, but thankfully slept until 7 am. But then the crying had started again as well as vomiting- he threw up 5 times before 10 am and obviously did not feel well at all. We decided to head back to Houston with my brother and SIL, who were coming back today anyway. Grayson was SO happy to get home, and even happier to see his Daddy- he just laughed and laughed while Ryan played with him.
It’s just NOT FAIR that we can’t take our almost 2 year old for a weekend away without him melting down for 2 days straight. I should be exhausted because of chasing him as he explored and had adventures outside instead of rocking his stiff little body like a 3 month old baby. I hate admitting that all this upsets me, but it does. I want him to have happy childhood experiences and not be housebound all the time, but after this weekend, I’m not sure how to accomplish that for him.
Thankfully, G is sleeping soundly and hopefully will stay asleep in his comfortable, familiar bed so we can all get some much needed rest tonight. I definitely need a battery recharge!