Friday, August 12, 2016

Living With A Child With Idic 15 Also Known As Dup15q in Photos 2

I take so many photos anyway that I thought I would share, again, what it's like living with Morgan who has Idic 15/Dup15q Syndrome using photos. This is a continuation from the first post I did earlier this year.

So again, I share these photos to help others gain an idea of what it may be like to live with the challenges we face, and most importantly, to gain awareness of such rare conditions as Idic 15 Syndrome.

We redid her room. This corner has all the tools we use for her Vision Therapy.

She's standing all by herself! With the help of her Stander.

Hippo-therapy. This is so good for her but she is wiped out afterward.

Danny designed a special shirt he wears to work in honor of her.

Service Dog Application Process. A lot of paperwork.

Getting everything together for a trip to the grocery store.

New equipment! This ToGo Seat has changed our lives!

The new wheelchair. How did we ever get along without it?

Playing with mylar paper.

Had breakthrough seizures. That, in combination with meds increase, caused her to loose all her strength for about a week.

Thumb splints. To keep her from holding onto her thumbs and not opening her hands. Had to use these for a while.
She rolls underneath the table and big brother joins her there.

Getting up on all-fours is tiring work.

Another EEG. I've official lost count of how many she's had. 

We have to add calories wherever we can. Getting her to gain weight is difficult.


She finally sits up by herself! A beautiful sight.

Keeping track of everything.

Holding big brother's shield.

New gear! Her bath chair finally arrives in August. It was ordered in April.

Happy girl. So grown up.

My Little Ball of Worry with a halo of curls.

 I also share these photos with the goal of gaining donations to 4 Paws for Ability.

4 Paws for Ability enriches the lives of children with disabilities by training and placing quality, task-trained service dogs. This provides increased independence for the children, and assistance to their families.

And they are trying to place a seizure detecting service dog with Morgan. And we can't do that without your help. Donations can be made by clicking the link below.

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