Well the school year started.....and boy did it start off with a bang! I have a couple of challenges this year, and feel absolutely mentally exhausted each night when I come home. As exhausted as I am, I am so happy by the fact that I see progress in these children already. I see so many changes taking place in their attitudes, behaviors, friendships, and academics. I am going to continue to celebrate those small growths, and hopefully will be able to look back and see those big growths by the end of the school year.
We are just hanging in there at home as well. We have had some lengthy discussions with some physicians, and they are having lengthy discussions with each other as well. One big thing that is taking place is that many of her doctors feel that the IGF-1 injections are not safe for Macy. They have now stopped that process and are instead going back to pursing growth hormone injections. All we know right now is the our endocrinology office has submitted the essential paperwork. From what I understand is that it goes to the drug company who then works on an approval from insurance. I am currently a member of a growth hormone deficiency group, and according to most of the families on there, insurance typically denies your claim the first time and we will have to appeal. I have all the faith in our doctors that they will help us get this approved!
After much discussion with each other and another phone call discussion with GI, we have decided to go through with all of the liver tests and possible surgery with Dr. Superina in Chicago. We are waiting for a call from the office for our initial consultation.
McKenna is in full swing with her fall soccer season. She sure has a lot of talent! We love watching her games on the weekends, and Jeremy is having a blast coaching! Macy gets pretty bored at the games and can often be found hanging upside down from her camping chair. In Tooth Fairy news, McKenna just lost her first tooth! She didn't know whether to laugh or cry.
Macy is taking a break from golf right now, and is excited for her first Girl Scout meeting of the year on Monday. She also joined the choir at school. She has choir practice each Friday morning as well as 3 performances in the next few months. She loves it! For years I worried often thinking about how Macy might do getting into activities that would allow her to be part of a group. And here we are with golf, gymnastics, choir, and Girl Scouts. Each one is so unique for her in its own way. A few weeks ago Macy had a great overnight camping trip for Girls Scouts and even learned a little archery the next day. I think she might have a new sport!
We just planned a trip to Florida in October. I want more than anything right now to see my Grandma Bettie. As many of you know, she was diagnosed with ALS in the spring, but they believe she has actually been battling if for years. Things are definitely getting more challenging for her. It is very hard to hear about, and it breaks my heart to think about what she and my grandpa are going through. So Jeremy, the girls, and I are heading that way in October for some time with them!
Speaking of my grandparents.....Grandpa Wayne just visited a couple of weeks ago! My mom and Aunt Kathi flew to Florida to stay with Grandma while Grandpa hopped on a plane and flew here. His first night here we went out to dinner, and then the next day he came to my school for a visit and lunch with the girls. He read with my students during centers! After that he spent an evening and overnight in Muncie with his brothers and then the rest of the time at the lake with my dad. We headed up there for an overnight that weekend to spend a little more time with him. It was wonderful! My girls love him so much!!!!
Thanks for all the continued prayers for our family! We would love if you could add my grandparents to your prayer lists! We'll keep you posted as new info arises with Macy!
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