So, this past few weeks. We have had issues with Aimee’s wheelchair van, which have now thankfully been fixed. The pivotol element, the ramp, was not functioning. Thank you so much to a couple dear people who sent Aimee funds this past month that covered a good portion of this cost. It is now working more smoothly than it ever has for us!
Aimee had a dentist appt a couple weeks ago at UW. Thankfully there is a new dentist there that seems a lot less concerned with surgically removing teeth. Due to medication, Aimee’s gums have grown over baby teeth. There is still the possibility that she will have to have them messed with in the future, but thankful to put that aside in my mind.
We met with Otolaryngology a couple weeks ago to get medical clearance for Aimee’s new hearing aids. A funny insurance hoop that must be jumped. It did give us our first chance to utilize the new North Clinic of Seattle Children’s that was built in Everett. It is incredibly close, less than a 30 minute drive. And there ends the positives. I have been fairly disappointed so far to discover that it was not built with disabled children in mind at all. It seems to have been designed for looks over function, as it is very challenging to get the wheelchair into the rooms, through the front door, and there is no changing space anywhere for larger kids/young adults. A big disappointment.
To swing back to positive, last week we had a 2 hour communication evaluation done by the speech language pathologist at children’s. It was amazing! She is going to help us get Aimee beyond just pushing communication buttons for cause and effect games. She even had us play some interactive games with Aimee in the clinic, similar to Simon Says. It was wonderful, beautiful, and gave me hope. From here we are going to attempt to have DDA funds cover a couple communcation devices.
We are also hoping to get Aimee an iPad again. The SLP recommended that we get one to use with the communication devices. Plus, Aimee did so well with it in the past. When hers died, we got a kindle for her instead since it was so much cheaper, but it doesn’t have hardly any apps available for her and is much less sensitive to her touch. It also is a dimmer screen and hard for her to see. I am looking around at maybe a refurbished iPad with a larger screen for Christmas.
Earlier this week, Aimee had a prolonged EEG done. We are just double checking to ensure there are no underlying seizures causing Aimee’s major lack of energy lately. It will be about 5 weeks until we have full results.
In general news, Aimee has been sick this past week or so. She is holding steady, though having some pretty intense choking episodes. She has also begun desatting during the nights again this past month, which had been fairly resolved for the past 6 months previous.
More updates to come as we navigate our way forward with/without school and communication. Praying that we can see our next steps clearly and can help Aimee wake up to the world around her again.
