Journal entry by Kelsey Kennedy —
I haven’t updated in a while, because there hasn’t been much going on in terms of Hollis’s health, but after today’s appointment I figured I would give an update on what has been going on.
Hollis has had to up his eye patch from 1 hour a day to 2 hours a day and his eye doctor did bring up the possibility of eye surgery in a few years, as it is only cosmetic we decided we will hold off on that decision until Hollis can decide for himself whether or not he wants it. He has also gotten a thumb brace that he has to wear 4-6 hours a day to keep his thumb extended rather than tucked into his hand like it naturally goes. He is still taking his seizure medicine twice a day, although as far as we can tell he is still having seizures. Hollis’s Pediatrician is trying to get him a neurology appointment in Spokane rather than Seattle, so we can get his medicine figured out and we can get a 24 hour EEG completed, unfortunately the waitlist for Spokane is months long, with Seattle’s waitlist being just as long. At Hollis’s pediatrician appointment today we also got an official diagnosis (because the Seattle neurologist threw out the idea of DDM) and he was diagnosed with Cerebral Palsy, since this is a rather broad term, pretty much just meaning “brain damage” we knew he technically had this for a while, but no one would give that diagnosis because we know what had caused the damage. His pediatrician said with the diagnosis it will be easier to get him help down the road and since it is widely understood we will have more luck with recieiving services.
On a higher note, Grant accepted a job for next fall in Rochester, MN, which is wonderful news regarding Hollis, because it is home to Mayo Clinic, which is the best of the best in terms of anything medical. So with moving in a year, having the diagnosis will help us a great deal in getting him set up with a PT, OT, speech therapist, and more as quick as possible.
The next big appointments we are looking at would be the neurology appointment and the 24 hour EEG, which could be months from now. Outside of those, appointments have pretty much died down for the most part, which feels like a really big accomplishment. All in all, Hollis is doing great and is as happy as ever, unless he is meant to be sleeping.
Hollis has had to up his eye patch from 1 hour a day to 2 hours a day and his eye doctor did bring up the possibility of eye surgery in a few years, as it is only cosmetic we decided we will hold off on that decision until Hollis can decide for himself whether or not he wants it. He has also gotten a thumb brace that he has to wear 4-6 hours a day to keep his thumb extended rather than tucked into his hand like it naturally goes. He is still taking his seizure medicine twice a day, although as far as we can tell he is still having seizures. Hollis’s Pediatrician is trying to get him a neurology appointment in Spokane rather than Seattle, so we can get his medicine figured out and we can get a 24 hour EEG completed, unfortunately the waitlist for Spokane is months long, with Seattle’s waitlist being just as long. At Hollis’s pediatrician appointment today we also got an official diagnosis (because the Seattle neurologist threw out the idea of DDM) and he was diagnosed with Cerebral Palsy, since this is a rather broad term, pretty much just meaning “brain damage” we knew he technically had this for a while, but no one would give that diagnosis because we know what had caused the damage. His pediatrician said with the diagnosis it will be easier to get him help down the road and since it is widely understood we will have more luck with recieiving services.
On a higher note, Grant accepted a job for next fall in Rochester, MN, which is wonderful news regarding Hollis, because it is home to Mayo Clinic, which is the best of the best in terms of anything medical. So with moving in a year, having the diagnosis will help us a great deal in getting him set up with a PT, OT, speech therapist, and more as quick as possible.
The next big appointments we are looking at would be the neurology appointment and the 24 hour EEG, which could be months from now. Outside of those, appointments have pretty much died down for the most part, which feels like a really big accomplishment. All in all, Hollis is doing great and is as happy as ever, unless he is meant to be sleeping.
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