October is one of my favorite months of the
year. The weather allows us to be out
and about because it is not too hot or cold.
Fall break allows us freedom to come and go without the worry of
homework.
This October unfolded many goodies! At the beginning of the month, Aislinn’s private
insurance pediatrician, Hospitalist at Children’s Hospital, and a social worker
made a house call. Yes, a house call in
this day and age. It was a two hour meeting
to identify our wishes for Aislinn. You
might know this as the "end of life discussion" or "the quality
of life talk". I always struggle
with this subject. I did appreciate being
in the comfort of my own home. It was a supportive
conversation. I think I surprised my
guests when I laid out "the plan" and described my support system. Yep, the plan includes hospice at home, list
of happy songs, and a video. It will be a celebration of her ascending into
Heaven into the arms of her Irish Grandma Sharon and Swedish Grandparents
Florence and Roy! We might just release
butterflies to fill the sky with the same vibrant colors that Aislinn brought
to this world!
October brought a blessing of communication from
three families each with a child living with a diseased GRIN1 gene. Interestingly they are all girls. These families span from Vermont,
Pennsylvania, and Sweden. How cool is it
that my blogs for Miracles for Mito have brought these wonderful families in
our lives to share our trials and tribulations? Way cool I say! I cannot tell you how happy I am to have a
connection with other families with the same rare gene mutation!
Aislinn had so much fun at Bison Park! Wellness and perfect weather helped make the
below cheerful memories of playing in the swing and laughter with her big
sister! Maybe someday Aislinn will have
a swing of her own in our backyard!
For
the first time in years, Aislinn was able to go to the Boo at the Zoo in
Denver. Lions, tiger and bears oooohhhh
a baby giraffe! She and her big sister
were diva vampires who had a great time scaring up some fun!
Over the past 18 months, Aislinn has struggled with daily seizures and status epilepticus requiring multiple hospitalizations. Countless medication have been gvein such as Zonismide, Rufinamide, and Clonazepam which brought temporary relief or none at all. October brought some promising news about Aislinn’s seizures. Imagine having fewer seizures in a day or month or year. Could this be a reality for her? I hope so! This news shot me over the moon because there maybe seizure releif or reduction on the horizon!
*Photo by S. Milto
Much love,
Michelle D.
Voss-Shelley
(Mom to eight year old Aislinn with a GRIN1 mutation)
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