Monday, September 13, 2010

A Big Week Ahead

After re-reading my last post, I think I must have been more tired than I thought. I hope it made a little bit of sense, even if not well written. :-)

Things are going well here in our house. Just busy. Very, very busy. Yesterday, my mother-in-law took the girls, all four of them, to the circus. They really had a blast! The best part was that Jeff and I were able to get a ton of work done in the house without having to stop to play "referee" or "chef" or a multitude of other careers we have taken on since becoming parents. :-) My camera is still on its way back from Michigan (oh, how I miss it) and the three disposable ones I bought are all used up, but when they got home yesterday, Clara was running around the house with a blinking clown nose and a really tall hat that came filled with cotton candy. It was so cute....I wish I could share a picture. She was tired, but still so much better than she was on Friday. :-) Alyssa played along because, you know, she is too old to have fun any more. She is 12 years old, for crying out loud! Emilie and Megan were high on cotton candy and life was just good. Everyone went to bed early, though, and had no trouble getting to sleep.

This is a big week for us. We have two back-to-back appointments this week that we have been anticipating for quite a while. On Tuesday, we go to see the orthopedist. Our wait for him has been the longest, but I am praying it will be worth it. I am praying for some answers.... We need to know what has caused Clara's legs to quit growing as they should, and if there is anything we can do to fix the shape of them. In the past we have been told that there was just not enough muscle tone in her legs to fix them, because anything they did to straighten the bones, the muscles would just not be able to hold in place. My hope is that she has grown strong enough this past year to make that treatment effective. We would like to avoid surgery, at all cost. One of her physical therapists is going to this appointment with us to help us ask all the right questions and understand all of our answers. This is a huge blessing!

The other appointment, I am very excited about. We finally go to the Mito Specialist! Woo-hoo! I may seem a little too excited, but it is for good reason. Clara had her muscle biopsy, a very involved procedure, last August. We waited until November 4th for results, and even then, we didn't know what we were looking at. (The report consisted of 18 pages of genius-ese). It took nearly a month for the neurologist to get the reports after that, and since the neurogeneticist showed no interest in seeing us back within the next three years, the neurologist gave us a brief explanation of the report and gave her the official diagnosis of "mitochondrial disease". As brilliant as our neurologist is, mito is not his specialty and there have been things arise that we have needed very specific answers for. I found Dr. Kendall, a mito specialist for 20 years, at the conference I went to last month, and I could not be more excited. She has already been wonderful to us, and I am looking forward to getting more answers. There are many things we may never know about Clara, but I want to know all I can so I can do all I can to help her.

Clara is a little anxious about going to more doctors right now. Anytime we have a hospital visit, she is a little more hesitant for a months after that about going to doctors. I can't say I blame her, so please pray for peace for her. Other than that, we are packing, packing, packing this week. Our "other" situation will hopefully be resolved today, so I can share more about that tomorrow (possibly).

I am hoping to send out thank you notes to everyone who has been there for us lately, but as time goes on and the move approaches, I am less optimistic that I am going to get them done before we move. Please know that if you have done ANYTHING for us, prayed for us, kept kids, provided meals, sped us to the hospital, met us at the hospital, offered to meet us at the hospital, gave us boxes, gave us tape, offered your home, called/texted to check on Clara, and the list goes on....know we are so truly thankful for your love and friendship. We will miss you all terribly.

More later!! (Hopefully, with pictures.) :-)

Have a blessed day!


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