In June we tried to take Hailey to as many local baseball games as we could. We don't have a professional MLB team but we as a family love baseball either way. We are never able to stay for very long. Hailey's bed time is 7pm and she kinda gets ataxic if she doesn't get 11 hours of sleep. Our friends always make sure that whenever we want to go to a game we have tickets waiting for us. We're very thankful for that! We are always happy to meet new friends and we did that this year! We love that people love Hailey! She makes friends every where she goes!
We also had a special visit from Hailey GREAT grandma who visited from Peru! We were able to play and even go to a restaurant. Spending as much time as we can while she's here! My Aunt who lives in California who is my mom's sister drove down with my grandma and we really appreciate that! Hailey thinks that my mom and aunt look alike and often call my aunt "the other grandma" which I think is super cute!
Hailey is growing and growing and has passed being 4ft tall now! Which means that she needed new AFOs to help those legs of hers! We had to go to Utah too many times to count! I loved how her old AFOs used to fit into her purple converse shoes, but now I'm sad they no longer fit...
The movie Inside Out was the GO SEE summer movie for us. Hailey LOVED it. I think it really helped her to understand feelings. We can't wait for the movie to come out. We put it on her Amazon wish list!
We did as much swimming as we could this summer. Every time we had to go to Utah and stay in a hotel we made sure it had a pool! We were able to find some reusable big kid swim diapers online and they worked great!
I LOVE JULY!!! July is when we get to go to Buffalo and spend a few days with our Leukodystrophy family. I hate that all of the children have to have this wretched disease but I'm so thankful to the Kelly Family for getting us all together. No regular friend or family member can really know what you go through, but my Leuko family does.
One thing that happened that I really didn't want to talk about was that I had forgotten Hailey's adapter for her g-tube. I had everything else. I had the formula, the machine but the one part that puts it all to use is the adapter tubing. I had forgotten it in the car and we were about to board a plane and I felt sick. How could I forget the one thing that actually puts the food in her stomach and helps give medications?!?
As I panicked I went on Facebook to ask anyone arriving that day if they had a spare I could have and I would send them a new one when we got back. Within seconds I had at least 14 people say they had an extra they would bring for me and then they all told me not to feel bad for forgetting. I was going to the most perfect place where if I was going to forget a piece of medical equipment I wouldn't be stranded and have to scramble to find this item. Such a relief!
Hailey loves being in Buffalo and seeing all her friends, but this year we were going to be missing a lot of them too. So many babies and children had passed in that short year. I didn't know how to explain it to Hailey.
I love to see her light up and play and hug and mingle with all the children. The ones affected by the disease and the ones that are not. Hailey loves everyone! She doesn't care if you can't talk or hug her back, or if you need suctioning or oxygen. She sees beyond that. She has a pure heart.
And to close up our summer we took Hailey back to Utah and we saw the musical Beauty and the Beast! After the show Hailey got to meet the cast and get autographs!
Then it was time for summer to end and for school to start! Hailey is in 2nd grade and still loves to take the bus to school.
See! I told you we've been busy! That was 3 months worth of blogging all crammed in to one post. I know each month deserved it's own but I just never had the time. Now I can't believe it's already October tomorrow!!!
October should be pretty fun! We have a big surprise in store for Hailey and I might actually be more excited then her! We have appointments all over the place. We have to get a new g-tube put in, we are going to visit with a new local neurologist, I'm going to find as many trunk or treat spots as possible, and we go back to Utah maybe twice...