Whisper Mom has returned!
I didn’t actually stop writing. I did however, stop posting (obviously).
The Aurora update is in and her seizures are no longer in control. The last time they were in control is also the first blog post I wrote on Whisperkid. Since then we have been through three new seizure medications. Each one adding new symptoms without any evidence of limiting or stopping her seizures. The most recent showed an improvement in mood, attention and muscle control. Unfortunately the seizures are still going strong. Instead of large amounts of big drops (when sitting on the floor her whole body would drop to the floor) we see an increased amount of small head drops. She has regressed in much of what we were working on with her. She will still stand with minimal assistance and take steps in the same way but the small drop seizures sap her energy and awareness in the moment.
Honestly, at this time I feel like our best bet is to give the cannabis oil another shot. We tried it for about 4 months I believe and we did notice a slight decrease. Unfortunately, we made the collective decision, with her neurologist to stop Charlotte’s Web. Her reaction to it was not as significant as we had hoped. I now feel like that may have been a mistake. The more I hear about it, the more I research it, the more I realize that every child reacts differently and every child may need a very specific dosage. I don’t think we allowed it enough time to find the right amount for Aurora and to allow it to work. So, that may be the next step we take.
As far as adaptive equipment goes…
We received a walker for Aurora early last year. She refuses to touch the handles. Right now there are many textures she dismisses immediately. I can definitely understand how things can literally feel uncomfortable. The handles on her walker are much like grips on a bicycle. They are a sticky, prickly rubber. I actually don’t like the feel of them either. Even without using the handles the walker does provide her with some support and we plan to continue working on transitioning to independent walker use in the future. Fingers crossed.
In addition to the walker, Aurora’s PT has been looking into an adaptive stroller for her. She is 6 years old now and comes in at roughly 40lbs., going up and down stairs is one thing but our backs are feeling the transitions from house-car/ car-anywhere else. I don’t know how many of you that read these have actually seen an adaptive stroller but I can tell you I absolutely hate how they look. With the amount of brilliant people in the world I find it incredibly hard to believe that someone hasn’t come up with better designs for adaptive equipment.
I have been working on a million different things. I’m starting a book (that I may or may not actually finish), I have another page in the works, we are still fighting the school and on top of all of that Whisper Mom and Dad have been working full time. We needed to find a way to make it work so that one of us was always home for Aurora. Thankfully my work was able to put me on an evening shift. It hasn’t been easy, we hardly see each other and we are rarely all home at the same time but it means that Aurora is getting the best care that we can find. It’s not that we don’t trust anyone else it is simply that we understand Aurora’s cues best. We are constantly working on keeping balance and routine in her life.
It’s important to us that we remember there are many people who lead difficult lives. We are lucky to be where we are in life and whatever struggle we run into can be overcome.
Thank you for reading and if you have any questions about the seizure medications, adaptive equipment or just any of this in general feel free to shoot us an email at firstname.lastname@example.org
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❤ Whisper Mom