Gracie’s Adventures in “Bob-Town”

Yesterday was Gracie’s three month post-diagnosis endocrinology appointment. This appointment is much anticipated, as it is in “Bob’s town”. Bob’s town as in Saint Paul. It is a drive. Normally it takes an hour and 15 minutes, but add some inclement weather, or rather, the accident alley the freeways became yesterday due to black ice, it took two and a half hours. This is always fun. It seems to be a theme for it to take ridiculous amounts of time to reach the Children’s Hospital in Saint Paul. Last time we went in November the drive was made in pouring AND freezing rain. Fun stuff.

So on to the news. Gracie is doing fabulously. She has grown a full inch in 3 months since beginning her insulin regimen. Gracie went from barely being on the growth scale for her height to around the 8th percentile. That is huge as Gracie is technically eligible (or rather was) for growth hormone treatment due to her size! Who needs growth hormones when you have insulin, though? Her a1c went from 5.5% to 5.3%. I don’t think I’ve EVER had an a1c that low. But, considering she is in early honeymoon stages of diabetes, that is what we should expect!

Gracie’s endocrinologist talked a little bit about celiac with us this visit. She is concerned because of Gracie’s height, but because Gracie hasn’t been having gastric discomfort much since beginning insulin, we chose not to test for celiac this time around. We WILL be watching her growth very closely. One item they noted was that although Gracie grew taller, she gained no weight. Is this normal? Who is to say. Gracie has NEVER grown normally, so I think she is on a different dimension of growth normality. It all boils down to time. We will know more in time as we closely watch her growth.

We increased Gracie’s lantus from ½ unit to 1 unit per day. The doctor explained to me that because Gracie’s morning blood sugars are consistently over 100, she’d like to get them a little tighter than that. She also explained to me that Gracie’s blood glucose targets now, when she has so much pancreatic function, will be much different than they will be when she is on short acting insulin. She is hopeful, though, for a few years of only lantus. I told her that I hope Gracie NEVER needs short acting insulin. I laughed (inwardly crying) and told her I knew that was foolish fantasy. Gracie’s doctor was so nice, though, and she said “No, of course it isn’t foolish. If you don’t have hope, what do you have?” It was so obvious in that moment that she regularly deals with families and children with chronic illnesst. She is so right and she set my heart at ease. It is okay to hope.

Later in the day, Gracie had her physical therapy appointment where she received her own pair of Theratogs ($400 dollars worth of straps and Velcro). I have been anxiously awaiting these things. They help to rotate Gracie’s hips and legs out. They are worn under her clothes during the day. It is amazing to see my daughter standing with toes pointed forward. It is amazing to no longer see her legs scissor when she walks. The combined use of the theratogs with her braces has made a huge difference in her gait. She gets tired more easily now, but she is in a lot less pain. I haven’t been hearing any complaints of back pain since we got her first pair of braces, but she has been telling me that her knees hurt. This makes sense as her knees often hyperextend through normal activities. Good news, though, is that she is being reduced to only one physical therapy appointment per week! YAY! The theratogs are going to do the work for Gracie all day everyday that physical therapy was attempting to do in twice weekly visits. I think that is a wonderful 400 dollar investment! It makes time for that Occupational Therapy that we are all expecting to begin (once they get the diagnosis straight in the request for evaluation….whole ‘nother medical story there!)

After therapy we ended the day going to an early education program I signed up for called “Family, Friends, and Fun.” This is a great little program that runs on Wednesdays from 6pm – 8pm. It is designed for parents of children with special needs. They provide a meal at 6pm that you eat with your kids. Then the kids are carted off to be with other kids in their age group for some choice time. They are with kids that have special needs and the siblings of kids with special needs. It is a great group, and the resounding theme is “Children are Children first, and a diagnosis only after they are children.” The parents then cart themselves off to hang out together for an hour and a half. It was great stuff to be with other parents of kids with special needs. Their children had a variety of special needs, but what I got from it was this: I am not alone. These people know what it means to have six appointments a week and then more to do at home. These parents understand what everyday is for me. I am not alone. It was awesome. I’m trying to get Bob to come one week. I think he might enjoy it too.

So, all in all, long and exciting day yesterday. And I was so blessed to have it!