Thank you to everyone who has asked about Clara's visit to the U of M last week. I am sorry it has taken me so long to blog about it!
Once again, Jeff and I decided to divide and conquer. We prefer going together, but it is so tricky to coordinate childcare every time, especially since it doesn't usually occur to me until a few days before the visit. (I am kind of living one day at a time, these days). I took the two little girls with me, and Jeff kept the bigger two, the logic being that if he needed to go to the office for some reason, it would be easier with the big girls. The little girls love this trip and call it a "slumber party".
Thankfully, there was no drama this time. There were no tables nearly overturned, our hotel room actually had two beds this time, the x-ray machine didn't blow up, and there was not a waiting room full of people to entertain. :-) However, much was accomplished. The doctor she was seeing was one of her doctors that I just really like...as a person and a doctor. I can never remember her whole title....something about specialist of bone rehabilitation something or other......but she is super smart and is a real person. Not that her other doctors aren't, but sometimes you just click with certain people. She has four girls, very similar to the ages of mine, and she is a competitive equestrian... a jumper... so she and Clara have a lot to talk about. (Not that Clara is ever at a loss for words.)
This visit was really a follow-up visit, but I had lots of questions. After Clara's recent visit with the orthopedist, I had time to actually process all that took place. I was sort of in shock while I was still there, and definitely not prepared for questions, but after having some time to think, I needed some peace of mind. I wanted to ask Dr. Green (the doctor we saw this time), because for one, she is a Mom and totally understands where I am coming from, and secondly, because she is not a surgeon. Not that there is anything wrong with surgeons, but when you ask a surgeon a question, you get a surgical answer, and I believe that surgery is not always the only option.
My two most pressing questions were:
1. Is surgery really the only option? Giving me two surgeries to choose from doesn't really feel like options, especially when one will require her to be in a huge cast for two months and off of her leg for another 6-8 weeks, and the other surgery is still considered experimental. Her doctor is "waiting to see if the legs of the other children who have had it still grow properly". Ummmm.....no thanks. I really wanted to know if there was any way to brace her leg to force it to grow straight, and Dr. Green works with all kinds of leg braces, so I knew she would know.
2. Every time we have followed up with her endocrinologist since Clara's Hypophosphatemic Ricketts diagnosis, the news is always the same after blood tests and x-rays: Her phosphates are still low, and her bones show no sign of healing. So, does it really make sense to do surgery on bones that are not healthy?
The answers were very straight-forward. She said that there was really no way to brace a leg that was turned in like Clara's. She felt we were definitely looking at a surgery in the near future, and that she definitely recommended the more invasive one over the experimental one. It also needs to happen while she is young and still growing. She also felt that the reason her ortho doctor was waiting was because of the fact that her bones are not, yet, healed. She did say that once the bones are healed, they are healed. I was concerned that a surgery would weaken the bone further, but she said that our bones actually heal stronger. That is not the case with ligaments and tendons, but thankfully, we aren't dealing with those. :-)
I have had concerns about her increased pain level lately, but she said that was typical of kids with Ricketts. Clara handles it well, and thankfully it is managed well with Tylenol or ibuprofen. Beyond that, she wants Clara to continue wearing her shoes with the orthodics as much as possible, and to continue her horseback riding (Which we have had to take a break from recently, but hope to get her going again very SOON) and other physical activity. Megan continues to be her best physical therapy. :-)
Needless to say, we are still praying for complete healing for Clara. We know that it would only take one touch from the Great Physician for that leg to heal straight and perfect, but we also know He may not choose to heal her that way. We will choose to be content with whatever His perfect will is for Clara.
I know this was not very well written....I had limited time to write, but wanted to go ahead and give everyone who has been wondering about her visit an update. Thank you for your love and your prayers!