For the past few months we’ve been noticing some serious language regression with Oliver. He has simply stopped most of his talking and flaps his arms (wildly). This has been painful to watch and maddening as we just don’t understand. So many things he could once say just won’t come out. We can tell he is frustrated, who wouldn’t be. We think this is part of the reason that he continues to bite us. We haven’t posted about it because frankly it is a HUGE downer.
All that being said, yesterday Oliver was more verbal than he has been in months. It was so precious. He gave kisses more freely than normal and seemed very engaged. Then this morning, he said, out of the blue, UNPROMPTED....”uh-oh”, when he dropped his sippy cup. This is SO HUGE! I haven’t heard him say that in months. Who knew I would one day get SO MUCH joy from uh-oh!?!
This moment of hope is so encouraging. The lack of communication continues to be one of the most painful things for us as parents. Oh how we long to talk to him, to understand what hurts, to ask about his day....
In other news we have reapplied (3rd time is a charm right?) for a program called CAP-C. It is a government program for the most medically fragile children. It would give Oliver access to so many resources and I am desperately hoping we get approved this time. As you know, his condition hasn’t improved since the surgery and as time goes on his peers are moving beyond him at rapid speed. It is odd to hope that they will consider him “medically fragile” enough to qualify. The process is long so I will keep you posted.
In other news, the Boston team is wanting an ambulatory EEG done. Oliver’s language regression and some serious instability (we had to take him to the ER the other week for a fall at preschool) have created some concern that perhaps he is having more seizures than we are aware of. This is scheduled for next Thurssday. It is a huge red flag when a child regresses. Clearly this has happened more than once with Oliver and every single time it tears me up. You just never know if the skills are gone on vacation or gone for sure. The few words he can communicate clearly, are so precious that to lose them, for any amount of time is gut wrenching. Tentatively we’ll probably be returning to Boston in late spring/early summer.
Lastly, I thought I’d end with some fun pictures. About a month ago we had our head shots taken for our new website and business cards by Melissa Hebert. She has become a friend through this process and has been deeply touched by Oliver’s story. It is amazing how God brings just the right people into our life when we need it most. I predict you’ll see more of her work on this blog in the future. I love when I meet someone who does their work with excellence and also has a beautiful soul. Melissa has both, a rare find indeed!
All that being said, yesterday Oliver was more verbal than he has been in months. It was so precious. He gave kisses more freely than normal and seemed very engaged. Then this morning, he said, out of the blue, UNPROMPTED....”uh-oh”, when he dropped his sippy cup. This is SO HUGE! I haven’t heard him say that in months. Who knew I would one day get SO MUCH joy from uh-oh!?!
This moment of hope is so encouraging. The lack of communication continues to be one of the most painful things for us as parents. Oh how we long to talk to him, to understand what hurts, to ask about his day....
In other news we have reapplied (3rd time is a charm right?) for a program called CAP-C. It is a government program for the most medically fragile children. It would give Oliver access to so many resources and I am desperately hoping we get approved this time. As you know, his condition hasn’t improved since the surgery and as time goes on his peers are moving beyond him at rapid speed. It is odd to hope that they will consider him “medically fragile” enough to qualify. The process is long so I will keep you posted.
In other news, the Boston team is wanting an ambulatory EEG done. Oliver’s language regression and some serious instability (we had to take him to the ER the other week for a fall at preschool) have created some concern that perhaps he is having more seizures than we are aware of. This is scheduled for next Thurssday. It is a huge red flag when a child regresses. Clearly this has happened more than once with Oliver and every single time it tears me up. You just never know if the skills are gone on vacation or gone for sure. The few words he can communicate clearly, are so precious that to lose them, for any amount of time is gut wrenching. Tentatively we’ll probably be returning to Boston in late spring/early summer.
Lastly, I thought I’d end with some fun pictures. About a month ago we had our head shots taken for our new website and business cards by Melissa Hebert. She has become a friend through this process and has been deeply touched by Oliver’s story. It is amazing how God brings just the right people into our life when we need it most. I predict you’ll see more of her work on this blog in the future. I love when I meet someone who does their work with excellence and also has a beautiful soul. Melissa has both, a rare find indeed!
1 comment:
My heart and prayers go out to y'all. We love you and are praying continually for Oliver. Thanks for sharing the pictures!
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