We are 7 weeks into a 9 week medicine wean. So far….so GOOD! No seizures! Maybe I should qualify that…no seizures observed! It is possible things are happening in his brain that we aren’t seeing, however, everything on the outside is looking really good!
We have had minor emotional hiccups the last few weeks. Gabriel’s sensory issues have been more pronounced. He especially loves taking really long showers, he has more and more issues with food texture and he prefers to run around without clothes on. His emotional expression have been heightened. Especially in weeks 2-4..Gabriel seems to get really upset about seemingly small things. Such as being truly upset about a fork being placed 2 inches further away than he thought it should be. It reminds me of the funny posts on facebook, where parents share things that make their 3 year olds have total meltdowns. Except, we aren’t 3 we are 7. (and not normal “7 year olds are emotional stuff”..literally like a 3 year old…throwing himself on the ground and wailing for extended periods of time). We have worked with his behavioral doctor and increased the amount of another drug he takes for mood regulation. That has helped tremendously in evening out his moods. This drug was originally prescribed to stop seizures but didn’t work. When we tried to wean it a couple years ago, it became clear that his brain has become reliant on it for mood regulation. I am sure we will work on different solutions or weans for this medication in the near future, but for now it is needed and enabling Gabriel to engage in the world!
I am so thankful for my background in child development, specifically early childhood education. It has helped me to remember that Gabriel has been on medication that has been controlling his brain since he was 3 years old. It has caused me to pause and realize…that there is a chance that Gabriel’s brain just needs to grow through some developmental stages because it never has.
During the last 7 weeks, we have seen Gabriel take some huge developmental steps. He is trying to use a fork and knife to cut his own food when eating! His default mode on things that are challenging has been “I’m not good at that” end of story he refuses to try. We are incredibly intentional to focus on effort not perfection, so this phrase was always so hard for me hear. I haven’t heard it much in the last several weeks 🙂 He will say he doesn’t want to do something still or avoid things that are hard but he is more willing to come back around and try! He is enjoying coloring and drawing as well. His teacher told us, that he could earn drawing time for focusing on his work. I couldn’t believe it. Last year he wouldn’t rarely pick up any writing utensil…crayon, marker,etc.
A couple days ago he told me wanted to carve pumpkins and that he needed a sharpie. His idea of carving pumpkins is drawing faces on them with sharpies! So cute…and much easier for his parents 🙂 Watching him draw the faces was delightful. He exhibited spatial and directional skills needed to place the eyes, nose and mouth appropriately, as well as the fine motor skills to create the shapes he desired.
He also seems more aware and engaged in the world around him. We went to the zoo this weekend and for the first time in years, he looked at the animals! He commented on what they were doing and asked questions! He has always enjoyed the zoo but it was more of an amusement park for him…we would go ride the train, the tram, the carousel and then go home.
I am daily reminded to celebrate what he is able to do and how far he has come. It can be overwhelming to see how far he still has to come and frustrating when getting through “simple” tasks such as getting dressed continues to be a daily struggle.
So we have 2 more weeks until he is completely off Felbamate, then we will continue to watch diligently for any signs for months to come (honestly…I don’t think we will ever stop watching). I imagine there will be more EEG (brain wave tests). I am sure there will be many more doctors visits, many more specialists, more setbacks but most importantly many more successes and strides. For now it seems we have won the battle against the seizures but the fight for Gabriel’s quality of life continues. For years our hope was to stop the seizures, that life would go back to normal. The seizure stopped but “normal” didn’t come. Now we are getting off a brain altering chemical and hoping for more chances at “normal”. We are in a weird, but wonderful situation, one where there is no clear outcome but there is HOPE!
As always, thanks for following us, keeping up with us and especially for your continued prayers!
Sarah Mackay said:
In tears. I so so get so much of this – and CELEBRATE and CHEER the advances you are seeing – the emerging fine motor desire, the interaction with others. You guys are awesome parents and G seems to be one amazing boy. Prayers for seizures staying away.