Round and Round...

That title pretty much describes our life right now! We are busy, busy wrapping up the summer (boo-hoo...where did it go?), getting ready for a new school year, and getting ready for our big trip to St. Louis.

There have been moments recently where I have really believed I am losing my mind....or what little is left, at least. I keep forgetting things and have trouble focusing on the task at hand. Friday morning, I woke up with the mission of tracing a pattern for a dress. That's it. However, what actually happened was that the pattern to that dress jumped on the merry-go-round that is my brain right now. I laid the whole thing out on the table and then remembered that I needed tissue paper on which to trace the pattern. I went to the basement to get the tissue paper and on the way back, saw the cucumbers from the garden that I had not yet pickled. So I pulled out all of my canning stuff, and as the pickling mixture was heating up, I noticed the basil on the counter that had been harvested a day earlier and still not been made into pesto to freeze. So I ran back down the basement to get the food processor, and on the way up, the lid slung off of the food processor and busted. So I went into the dining room to get super glue to glue the lid back together, and noticed the pattern still laying on the dining room table, still waiting to be traced onto tissue paper.

See what I mean?

As crazy as I feel, it is all for good reasons. I wouldn't trade schooling my children for anything, and it is such a gift from God that Clara is going to be seen at the Shriner's Hospital. It is just the preparation that is sucking the life out of my brain. :-)

"What does a dress pattern have to do with Shriner's Hospital preparations?", you may ask.

As we get closer to the date (less than two weeks!), I have gotten past all the major stuff (medical paperwork, food log of everything Clara ate for a whole week, medical records from every doctor she has ever seen, plane tickets, accommodations, etc.) and I am now trying to plan for the minor stuff, like activities for her to do on the plane and in the hospital, how many bags we can check, how to get a car seat to St. Louis, how in the world to push her in her chair and drag two carry-on bags behind me through the airport, and "What in the world am I going to do for five days while she in the hospital?" That's where the pattern comes in. I have always dreamed of my two little girls having matching smocked bishop dresses for Easter. Our budget has never allowed for me to buy them in a boutique, so I decided I would make them...and sitting in a hospital room for five days should give me plenty of time. Besides, I just can't see myself doing "nothing" for five entire days. That would NOT be good for my brain....nor would I want to inflict the punishment of my boredom on those who will be sharing the hospital room with us. (My family can attest to this.) So I now have the dresses assembled, pleated, and ready to smock.....and 5 jars of pickles and two ice trays full of frozen pesto. :-)

There have been many questions about what Clara will be doing when she is at the hospital. The main reason for her visit this time is testing. They will have Clara on a diet very similar to what she eats at home, thus the reason for the food log I mentioned before. This allows them to see exactly what she is taking in and how many phosphates and other nutrients are being absorbed into her blood and what is being lost on the way out. They will monitor this by frequent blood draws and urine specimens. The type of rickets she has is not the dietary Vitamin D deficiency type, where simply increasing the intake of Vitamin D fixes things. It is the genetic type that makes her resistant to Vitamin D and phosphates. These are the two nutrients that work with calcium to make your bones strong. Clara's body, however, wastes phosphates, which is what makes her bones weak, her legs bow, and her first few baby teeth not form completely...among other things. Furthermore, she and I both had to stop all vitamins and supplements of any type this past Sunday. They want a clear picture of what is going on in her body, but they may also take some blood samples from me to do some genetic testing. This is primarily a research facility, and they want all the facts!

Additionally, she will likely undergo a bone biopsy (not looking forward to that), and she will have an orthopedic consult while we are there, as well. I feel sure they will be very thorough, but I think we will still be left with a good bit of time on our hands. We'll see. :-) In the end, however, we should have a good picture of what is going on in Clara's little body, in addition to leaving the hospital on an effective treatment plan. She will have blood work done every three months at home once she returns and they will see her back in St. Louis in a year....and every year after that until she is 18 years old. There is no doubt in my mind that we have found the expert in this field and I am so excited to see what he has to say. You never want something to be wrong with your child, but if there is something wrong, there is great peace in knowing God has put you in the right hands to discover exactly what you're dealing with.

I will try to blog every day while we are in St. Louis to keep everyone updated. I will be taking a friend's laptop with me. Even though the  paperwork we got said "no electronic devices", the nurse made it sound like they are flexible with this rule. I already have to leave the room to eat (I am not allowed to eat with Clara because of her very strict diet), so I don't know that I will feel good about leaving her alone again to go to the computer lab if, for some reason, they do not not allow me to use the laptop. I will do the best I can, though. Hopefully it will be a non-issue.

If you want more information about the hospital, here is the link.

Also, in case you were wondering, she can have Mylar balloons, but no latex. If you send anything else (and I am not asking you to....just saying "if"), please keep in mind that we are traveling with one checked bag and two carry-on bags, so we don't have a lot of space. She is also prohibited from having any tobacco products, so please refrain from sending cigarettes until we are home. :-P

So there it is....all the information you ever wanted about our trip to St. Louis (and then some), and a little tour through my crazy, twisted brain. :-) Aren't you glad you don't live there?

If we come to mind, please pray that:

1) Clara stays healthy between now and then. She had to go off of her Mito cocktail and we have found that she is so much healthier and stronger while on it. It's only for a few weeks....hopefully it won't leave her system that fast.

2) Travel goes smoothly...and packing, too, for that matter. I am so afraid I am going to forget something important.

3) Jeff and the other three girls are safe at home and that all goes smoothly. I don't worry about leaving the girls with Jeff-he is a great Daddy. I just know it can be a lot to juggle, especially if you're not used to it.

4) This is Jeff's busiest time of the year at the ministry. He is working very hard to get everything done before we leave. Please pray things will go smoothly there between now and then so he can be home that week with a peaceful mind and will be able to just enjoy the girls.

5) Clara will have "the peace that passes all understanding". She has mentioned "being nervous" in the last few days. We are praying she will just be able to look forward to the good parts...being on an airplane for the first time ever, spending a week with Mommy, etc.

5) Most of all.....we will get answers once and for all, and the right treatment plan for our sweet girl.

I hope your day is great!

Much Love!
Jeannie

Paper Cranes

Hi Friends!

I have quite a few updates I want to post, but tonight, someone else is very heavy on my heart. If you have followed my blog for a while, you may remember my post about the first mitochondrial disease/FOD symposium I ever attended. While there, not only did I meet Clara's current geneticist, whom we love dearly, but there was another girl there with her mom who made quite an impact on me. She was a lovely young lady who was stricken all of a sudden, at the age of nineteen, while working at a camp for disabled children. Her name is Leslie. A few years have passed since I have seen her and her Mom, but I have kept up via Facebook, and she is declining very quickly.

Leslie's family has been working very hard to help her accomplish everything on her bucket list. She was granted a wish last week to meet Reba Mcentire, but the trip was very hard on her and she will no longer be able to travel. However, there were many items on her list that require no travel at all. One of those items is that Leslie wants to fold 1000 paper cranes. My girls and I have folded a few in the last few days and will be mailing them soon. I thought if you had a few minutes and a square piece of paper, you may want to help, too! i will admit that ours are not extrememy lovely (it was a little tricky for me and beyond tricky for my two littles), but now that I have done a few it is getting easier, and it's kind of fun, too!! Here is the website if you're interested:

1000 Paper Cranes for Leslie

I hope you are all doing well! I'll be back soon. :-)

Much Love,
Jeannie