We had our follow-up neurology appointment a few weeks ago. Sorry for taking so long to provide the update! There really isn’t much to say. My child is a child with Ataxia-Telangiectasia. While many parents may work diligently to help their child improve their mobility, fine, and/or gross motor skills, all that we can do is hope to assist him in keeping as much range of motion as possible. We work to help him adjust to his new level or normal as that level continues to decline. We find him ways of doing things differently to accommodate his level of ability. This isn’t to say we wallow in self-pity, but it is never an uplifting appointment. Braden’s ataxia has noticeably worsened. His hand and arm posturing has immensely increased. All in all, he is progressing like a child with his condition does.
Moving on to happier notes! Braden and his little sister got to go on the Polar Express with their grandparents. Unfortunately, I was unable to go due to pregnancy complications. However, I did get picture texts to make me feel a part of the experience! Now the holidays are in full swing at this house. Both children are enjoying the lights, making home-made gifts for family, and all the festivities. It was with great difficulty and plenty of help that Braden helped us string beads onto a thick cord to put on the tree. I think I will never ever lose them. He was so very very proud! Today he painted an ornament for his grandparents, but was seriously sad because he felt his wasn’t nice enough. His tremors mixed his paint into a thick green color as it swiped over the other reds, blues, and yellows he had painted. I assured him that it was an extremely precious gift and one that he put much love and effort into. I reminded him that it would be forever treasured by his grandparents. Some hugs and many kisses later, all was well. It just saddens my heart that he wants to do so much, has the intelligence to understand too much, and his body limits him. We do our best to help him do anything his heart desires, but we can’t fix what is happening to him. All we can do is build him up and teach him to not become a victim. He deserves better than that.
Next up is his follow-up immunology appointment next month. We know that his t-cells and blood counts are low, but we really don’t know how low. So, it will give us some pretty useful information. In the mean time, I’m going to sit and eat a chocolate chip cookie that the kids and I made today. That positive trumps the negative that is thrown our way.
Hugs to you and yours,
AKA Braden and Genevieve’s mom