Artificial Pancreas Excitement!

For the first time ever this week, in a rare moment, Kailyn voiced how she hated Type 1 Diabetes and how she wanted it all to be gone. She did not feel well and it was one of many complaints, but she has never said she hated Type 1 Diabetes so blatantly.  I told her my usual, "That is just how things are and you have to deal with it".(We were told to never say I'm sorry or to coddle her about it) She knows that, but still wishes it would go away. I was online and I noticed someone with a child that has Type 1 Diabetes doing a trial in Boston for the Artificial Pancreas. Kailyn and I have talked about it, but more like something that would be a dream. The FDA is dragging their feet letting these trials happen and getting funding is getting harder and harder. Well, I showed her the pictures of what was going on and she got VERY excited. She wants to participate in the trials so badly, but is too young. Even just eating for a few days without pricking her fingers sounds like heaven. So, I took a video of her talking about the prospect of this happening. It made me realize how much Type 1 Diabetes consumes every day, every hour, every minute of her life and how much it really alters how her daily life is.




Please excuse my video taking and editing skills. lol

Sometimes my kids crack me up!!

     Sam, "Why do we give our toys and clothes to Burger King?" I was completely baffled about what he was talking about. Then, I remembered that the drive thru is near the back entrance to Good Will. So, for years, Sam has thought we were bringing our items for charity to Burger King.

 

"SAY CHEESE"

I was taking a picture of Keira with a basket on her head. If you have not heard, she LOVES to put buckets, baskets, pots and pans on her head. Today it was a meatloaf pan. I think it is her attempt to dress because she can't do any self dressing at this point, although, she has started to put our shoes on.
Well, I picked up my camera and pointed it at her and she said, "Say Cheese". Echolalia, but I will take it! The seizure medicine makes her seem more with it and she is babbling up a storm and even copying our words sometimes. I can't wait until next week when she starts getting her ABA therapy.

"Say Cheese!"

Yes, I am up too late.

Hubby is working an overnight shift and Kailyn is hinting that she is "sick". We laid low today, but she still complained that she did not feel well at bedtime and beyond. Blood sugars were high, but no ketones.  We managed to get all of them bathed, homework done and in bed by 8pm after an awesome Patriots game. Super Bowl Bound again!!! Sam can't wait to start playing tackle football and thinks his first team to play on will be the Patriots. I admire his dreams. Won't crush them quite yet.
ABA will start even more this week. Keira FINALLY got into The Reach School in home ABA program for children under 3. It is going to be like having a Mother's helper 2.5 hours 4 days a week. I can't leave, yet I am not responsible for entertaining/educating her. We can also go on outings with our ABA instructor. There is a double edge sword to having this, but we HAVE to do this for Keira. It is HER future that lays in the balance. The earlier they can reach into that brain and retrain those Neurons and Synapses the better. Best part is that they don't care how my house looks. However, if they are here, I can take advantage of cleaning/cooking instead of following her around as she destroys. ;) Then, when the big kids are home, I can put more time into them.  I am looking forward to seeing progress with Keira and getting a bit more organized.