Sept 25 - Shriners orthodics

We got new splints and shoes. So far she is doing great with them. While Adi was getting fitted for her splints there was a girl in a room across the hall from us, about 8 years old, getting fitted for her prostetic leg. The girl was so excited to be able to walk in her new leg that without knowing it she gave me a much needed lesson on gratitude.
Being at Primary Children's Hospital and at Shriners so many times this last year has made me more aware of how special and strong children are that have special disabilities and medical challenges. I can't help but be humbled by the knowledge that such a special little girl came to our little family.

Sept 21- Birthday Celebration Take 2

This time around was much better. Adi fell asleep while Kaelin and Cami blew out there candles and opened presents. When she woke up it took her a little while to like the cake but once she got started it took her a while to stop. =)

Sept 20th- Racing for Elenore

Racing for Elenore- Scott and his friend Andrew both qualified to race at Miller Motor sports complex for a brand new Mustang GT. The competition included 100 people in a go cart race. They had a qualifying heat and they took the top twelve times to race in the final. Both Andrew and Scott made it. It was fun watching them race. There was one guy that was just flying around the track and Scott and Andrew were trying to figure out what his secret was and they finally figured it out on the last heat of the finals but they were too far behind to make up the time. Before the winner was announced Scott and Andrew decided they would be ok with whatever place they got as long as it wasn’t 2nd or 12th. They got their wish and walked away without the car, but with some fun memories.

Sept 14th Happy B-Day!

Happy Birthday Adi!!! We decided to wait until Cami came up from SUU to celebrate their birthdays together with the family. We had a practice run. Adi, who has been sick with a stomach flu, ended up very crabby and cross wanting nothing to do with her cake.

Sept 13th- Birthday fun

Scott and I decided to take Adi to Chuck E Cheese for her birthday, where she could watch other kids (which is her favorite thing to do). We gave her a piece of the pizza crust and she held on to it and wouldn’t let go. We laughed… you’d never think this little girl had eating issues.=) It was fun watching her facial expressions as she experienced the fun of the place where a kid can be a kid.

Sept. 11th

Adi and I were on the freeway at 7:30am this morning headed up to Shriner’s to get her casts off. When we got up there we got right in to see Sonya at 9am and she took off the casts and let her soak her feet and play in warm soapy water. Adi was so cute to watch and wished I got it on camera. She had loved hitting her feet together with the casts because of the slight noise they’d make but once they came off she just looked like she didn’t know what to think about her real feet. Sonya loved the amount of progress she saw in one session of the casts that she decided we wouldn’t need to have a second round right away like we’d planned. They made soft removable casts for her to sleep in and then sent us down to get her feet molded for braces for her to walk in. She is a really patient child and the man who worked with us was impressed by how good natured she was during the whole procedure. We left Shriner’s at 10:45 and went directly to Timp hospital for a weight check. She is 15 lbs 8 oz which we are happy with considering the stomach flu she’s had for over a week.

Sept. 9th

I was thinking of writing quick summaries of what has gone on in the last 10 visits with specialists (neurologist, genetics, surgeon, Shriner’s, physical therapy, etc) but have realized I would always be playing catch up so instead I copied and pasted an email I sent to Amy Fish. Amy thanks for helping me realize that I needed to keep this short and sweet.

Things are finally looking up. I love Merlin, his nano water and Dr. Jim Kaiser who has all the best answers. The nano water has been what I attribute to her weight gain and looking so healthy. We are off seizure meds, teething, and finally having a chance to be semi normal. She has casts on her legs up to her knees to help the tendons around her ankles stretch and has caught some really bad stomach flu. She has given us a few scares where doctors have given us worst possible scenarios and I have sadly taken the bait. I am learning a lot and there has definitely been growth in my understanding of the medical field. Although I am glad it exists I know it does not always give you the best solution.
I am looking forward to next summer and Adi being able to play with all the kids. My hope is that she will quickly catch up to other kids her age now that she will not be in the hospital all the time.

I can not thank everyone enough for your love and support during this time. When I look at the stack of bills and just start making lists of all I have to do I sometimes freak out. I can feel the strength of your prayers as I find the patience to deal with issue after issue with the insurance companies. The dumbest thing I have done is get a secondary insurance policy. The headache it has caused is beyond anything I’d ever wish on my worst enemy.