Macy is doing great! In the last month we have struggled off and on with her INR levels and her weight. I think we are heading in the right direction now though. At one point we had to stop giving her the Boost Plus drinks that she's taken for weight gain because it is high in Vitamin K, and Vitamin K counteracts Coumadin. Her INR dropped to 1.4 at one point, and she is supposed to be between 2 and 3. Keep the Rex Shunt open is the most important thing, so we stopped those. However, the she began to lose weight, and she was already 5 lbs down following surgery.
We recently started her on some protein powder drinks to help. We've had to play around with her Coumadin dose again though. Not because it has Vitamin K in it, but I think the increased protein and nutrition caused the changes. Unfortunately we were playing around this with all while on vacation in Savannah, so it created a lot of extra work while down there with med changes, communication with Chicago, and INR blood level checks. The great news is that we have her at a therapeutic level now, and she has started gaining back some weight! And yes, she does look good.
She was released medically for all physical activities (with the exception of anything that could cause trouble while on Coumadin). So that means she gets to start golf again! She starts back up this week on Tuesday. Yay!
She did great on our trip physically, and I am so proud of her. To think that prior to the trip the furthest she had walked was what she was walking in the halls at school, you'd have never known seeing her hike/walk/run around Savannah. She got a little tired on one of our walking tours on the 2nd day, but it had been the most physically active that she had been since prior to surgery. She amazed me!
We got some tough news following our Endocrinology appt. we had the day before our trip. Endo follows Macy growth and development. If you have been following us for a while, you know that Macy has been on growth hormone injections since October 2015. These are nightly injections that she gets every day. Every year we get a bone age x-ray when we visit endo. So the further apart your bone age is in the xray from your actual age, the more growth you possibly have. For instance, last year, her bone age was 10 years old, but she was 12 1/2 years old. So that was good! We did a bone age x-ray at this most recent appt. as well. They typically send us the results in the mail, so when I had a voicemail from the doctor herself, I knew something wasn't right. Macy is currently 13 1/2 years old, and her bone age x-ray came back at age 12. So it's catching up to her real age. That doesn't look good for her overall height. There were some other discussions brought up about things involving puberty, hormones, and reproductive organs. Problems that we will not focus on unless we have to in the future, so I am not going to go into it. However, she is currently 4'6", and her projected height is now about 4'9". The fact that she is still in the beginning stages of puberty may give us some more hope, and give her a little more height. I am not quite 4'11", and I do just fine. Simone Biles is only 4'8", and she does just fine too! She is who she is, and The Lord made her just like he wants her. Just pray that The Lord chooses to give her some more time to grow!
McKenna is doing great as well! Our little go-getter brought home straight A's all year, and perfect attendance all year. In our school you can't miss a minute of school.....like leaving early for an appt. or arriving late. She didn't miss one minute of school this year! Not only is she proud, but we are extremely proud too considering what we have all gone through this year. She played on 3 sports teams this spring, and just recently started All-Stars for softball. We have 4 tournaments this summer. Travel soccer try-outs are Wednesday, and she has been putting in some extra skills work to prepare over the last couple of weeks. The kid loves sports!
We have 3 main goals for this summer!
1. Stay healthy
2. Relax
3. Have fun!
Thanks for checking in on us! Please continue the prayers, we always appreciate them!
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