Macy has been taking horseback riding lessons since we got the okay from Dr. Superina's office, and she's loving it! She handles the horse pretty well, and is learning so much! I feel so proud watching her! I had no idea that we would all have to know so much about horses. It's our job to get her horse, Raisen, out each lesson. We brush her, get the saddle and pad, put on the saddle and pad, take her out to the arena, and get her bridle. None of us have been brave enough to attempt putting the bridle on her, so Macy's teacher does that for us. We have to go through a big process to put her away as well. We quickly realized that we all needed boots and old clothes when we go out there for lessons. We are a mess when we leave! It's so much fun!
McKenna is knee-deep in basketball season, and Jeremy is coaching. He is doing an amazing job with the kids, and they are all having a blast! This is the first basketball season for McKenna to be on an all girls team, and we switched leagues. We finally transferred her over to our school corporation league, since we previously played for a church league and they don't have a league this year. It's a much longer season running from November to March. We have a break for Christmas, so we are going to enjoy no practices and no games. Christmas break has officially started! The girls and I are off until January 3rd. Jeremy will officially be on vacation at 3:30 p.m. om Thursday the 22nd, and doesn't go back until January 3rd! Woohoo! We are looking forward to family time!!!! I've been asked a few times what we are planning on doing during this time off, and I have responded each time with "NOTHING"! Jammies days are in our future! We need this break!
Another question I often get is "How is Macy?" Lately, that is a question that I have to answer, "she's okay". I have been concerned since August about her weight gain. She is not gaining any weight. I've brought it to the attention of a few of her specialists, and the typical response is that the weight will come, that her body is focused on catching up in height right now, and the weight will come. It is true that she is growing in height. She is up to 4 feet, and is growing at the rate of 2" per year right now. That is a faster rate than most kids her age. Since we are seeing height growth, she appears to be stretching out, therefore looks much, much thinner. Thankfully she has not lost any weight, but she just isn't gaining any. The stares are awful! It's typically strangers, who stare, and I know they are thinking about how thin she looks. They are judging her, judging me, and have absolutely no idea what this little girl has been through, and how hard we focus on total health for her. They have no idea that I don't sleep at night worrying about her. They have no idea..... And it brings all my concerns to the surface when other people comment about her thinness. Just because I don't talk about our struggles, doesn't mean I am ignoring them. The struggles overwhelm me, and I have a clear focus just like always to help Macy be the healthiest she can be.
Which leads me into our endocrinologist appointment last week. We tested her thyroid again. The strangest thing about this is that she has been living in a high range with her thyroid, which means it is slightly underactive. Looking at her, that makes no sense. We are not treating it since it is only slightly elevated. I felt a little crushed, I just want some answers. So our endo asked me about my concerns. Of course her weight was at the top of my list. After a long conversation about which specialist leads the management of weight, I explained that no one really does. All of them touch at the subject, but I truly feel I have no support in this area. She said GI should be handling this, and that she wants us to go back, and demand a plan. In GIs defense, they came into the game late. We didn't start back with them regularly until we decided it was time to fix her liver. We talked briefly about a time frame in which Macy actually seemed to be gaining. It was back a few years ago when we had her drinking an elemental drink as her nutritional drink. This elemental drink is Peptamen Junior. From the pharmacy, this is the drink that costs over $200 per case, that insurance refuses to cover. They refuse to cover it because she takes it orally. If she was receiving it in a G tube, they would cover it. Anyway, after drinking it for months, we stopped because it was costing us an arm and a leg, and our nutritionist thought we could give something else a shot. I think everyone also though the liver surgery would help her start to gain. So, we are giving the Peptamen a shot again. I have ordered two cases, and we are back on it twice a day. I want to give it a go again for 1 month at least and see if we get any results. We will also be seeing GI tomorrow!
Please pray for some ideas! We head back to Chicago in January, and we are praying for good scans. We are praying for adequate blood flow through her "portal vein" and that Dr. Superina tells us that she can stop the Coumadin. Pray for all of these things!
Merry Christmas from our family to yours!!!!
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