Clara's Journey Continues

It occurred to me the other day, as I spoke with a friend at church, that many people up here really don't know Clara's story. After all, it's not something we go around talking about all the time, and we have been very intentional about keeping our lives from revolving around her medical problems....or trying to, at least. (Sometimes it can't be avoided.) My friend was asking a lot of questions (I think people are finally starting to feel comfortable enough with us to ask questions), and as I was telling Clara's story, I said something along the lines of, "A book could be written about the miracles God has performed in her life up to this point." My sweet friend said, "Oh...I know! You should start a blog." It was then that I realized how new we really still are here. :-) I was going to go through my blog and post links to some of my posts that really tell her story for my new friends in Michigan. After sifting through three years of posts, however, I realized that I didn't really know what people would want to know, if anything. So....if you are a new friend, please feel free to browse through my blog history. Most of the earlier posts are about her. There is one post that is a general overview (kind of a Cliff's Notes version, if you will), but specifics are in other posts. If you can't find out what you want to know, just ask. I would rather people know than speculate. After all, the body of Christ is family, right?

Having said all of that....here is an update and some exciting news!

We just returned from a visit to the U of M. It has been a few months since we were there, and today's appointment was to visit one of our favorite doctors. I know I have mentioned her before, but I can never remember her whole title. Something about spinal health and rehabilitation??? I don't know. But I DO know that we love her, can talk to her about anything (she's a remarkable translator after we have talked to the other doctors), she has four girls like we do, and she handles all of Clara's orthodic needs....including getting her set up with her adaptive stroller. Clara loves her, too, and to sweeten the whole deal, Dr. Green also rides horses! She's a competitive jumper, so they always have lots to talk about. :-) Our visit today was short. Basically, she said Clara's pronation looks improved (YAAY!). She mentioned that if it did not correct itself with orthodics, Clara would need foot surgery, in addition to the leg surgery she will need (unless God straightens the leg like we are asking Him to). That was the first I had heard about foot surgery, but I am never really surprised about being surprised at what I learn at Clara's doctor visits. She did mentioned that we would want to avoid that surgery because it's messy and hard to heal from.

Have I mentioned that doctors are not the best salespeople?

She gave us permission to let Clara wear her cowgirl boots without the orthodics, though, and that made Clara smile. She really doesn't care for her orthodics.

Beyond that, Clara looked good from Dr. Green's perspective. She had grown a centimeter since we last saw her (It's a small amount, but we'll take it!), and was otherwise healthy. Dr. Green had three medical students following her around today, and while most kids would be intimidated by that, Clara was NOT! She was in true character and did not disappoint. She had everyone rolling!! There are things Clara lacks, but personality is not one of them. :-)

Usually when we take these trips, it is me and Clara, and either one of our other children, Jeff, or once, a friend went with me. However, this time, Jeff felt like we all needed some time away, and we ALL went. We always try to throw in something fun, Cracker Barrel for okra and chicken-n-dumplins if Clara has her way, but since we had the whole gang this time, we wanted to do something they could all appreciate. We LOVE the show Man V. Food, and on one of his shows, he was in Ann Arbor. He went to a restaurant called Tio's Mexican Cafe, where he completed the "Mt. Nacheesmo Challenge". While we would never, ever attempt that challenge on our own, we did think it would be fun, as a family, to share the 5 pound platter of nachos.

Yes, I said, "Five pounds."

 The cacophony.

Can we just say the blessing, already?

 The carnage.

 Uggghhh...

On to the exciting news!

Throughout Clara's journey, it never ceases to amaze me how God has provided what we've needed, right when we have needed it. She is complicated, medically, and as of right now, we are still not entirely sure what all is going on with her. At her last visit with the geneticist back in April, it was strongly suggested to us that we get a second opinion on Clara's rickets treatment. She has undergone treatment for hypophosphatemic rickets for nearly a year and a half, with no results. When she was first diagnosed, her endocrinologist at the U of M talked as if it would take 6 months, or so, of treatment, and the rickets would be gone.

That has not been the case.

Every six months we get new lab work and knee x-rays, and every six months it's always the same: No progress. Her body is still wasting phosphates and her bones have not healed. This is frustrating to me on many levels:

1) Clara is in pain. It is worse with heat, (which still makes me think mito is a factor), but it kills me for her to go to bed crying in pain and to spend a large portion of her day lying around because it requires too much effort to keep moving. Dr. Kendall prescribed a new cream for the pain (ibuprofen doesn't always help anymore), and I have found a pharmacy that will compound it for us. Hopefully that will help.

2) She is getting older, and the older she gets, the less chance there is that some of her physical damage from the rickets will correct itself.

3) Aside from God's healing hand....and I know He can if it's His will.....Clara needs surgery to fix the bowing of  her legs. Damage is being done to her lower spine and hip. However, the surgery she needs to fix her leg cannot be done until the rickets is gone. The bone has to be cut all the way through and pinned back together, and that cannot be done on unhealthy bone.

After our visit with Dr. Kendall in April, we began praying and researching medical journals to find a doctor that would see Clara for a second opinion. We kept hitting a lot of dead ends, and even thedoctors we found that seemed promising, we never felt a peace about, so we left it in God's hands, praying that God would lead us down the right path.

Out of the blue one day, I got a phone call from one of my favorite people in  he world. She has Type 1 diabetes and had an endocrinologist she loved until the doctor moved to Colorado about three years ago. She asked if I would e-mail a brief paragraph about what is going on with Clara so she could e-mail it to that doctor.

If I'm being honest, I was skeptical at first. I wondered why another person's former doctor would care about my little girl. I didn't think it would hurt anything, though, and I sent it on to her. Well, wouldn't ya know? A week later, we got a response form her! She recommended a doctor at the Shriner's Hospital in St. Louis that deals with bone diseases. When I googled him and read the description of what his specialties are, I nearly cried. It matched Clara to a "T". I thought, "God has put this man on earth just for Clara!"

His e-mail address was right there on the page, so I sent him a longer medical history on Clara, praying that he would agree to see her. In less than twenty-four hours, his nurse had sent me an e-mail requesting that I call her. She said that the doctor had forwarded my e-mail to her and he wanted to see her. She wanted to set up an appointment! When I talked to her on the phone, she said that Clara was exactly the kind of patient that the doctor sees, and that he would like to get her scheduled as soon as possible. (Commence tears...tears of relief, I guess. It's been a long road that keeps winding, twisting, and turning.) There is an admittance application that we had to fax first to get her into the system, then after that, we can get the ball rolling. She also said that, since it is a Shriner's Hospital, a research facility, they will admit Clara for a week, monitor her constantly, and set up the best treatment for her based on all of her levels for that week. And to ease my concerns even further, they will find her a sponsor from their end, so all we have to save money for is a plane flight and food along the way! GOD IS SO GOOD! You better believe that I will never pass a Shriner again without putting something....even if it's just the change in my ashtray....in that red velvet hat!

The next day was a whirlwind of getting paperwork filled out and faxed and putting together the medical records I thought they would need. (I have them all in a notebook, but the notebook is about three inches thick, so I didn't think he would want the whole thing.) I will keep you posted. This all happened right before the weekend...a long weekend, at that. :-)

After perusing my blog today trying to find posts pertaining to Clara, I remembered how much I really do enjoy blogging. However, after a 6-8 week bout of mono, two and a half months without a computer, and then life, in general, I have accepted the fact that I am not going to "catch up". I am not even going to make any promises about blogging more frequently. I will say, however, that it has been good to be on, even if just for today, and I hope to become more regular again. :-) Thank you for reading this one, and for being concerned about Clara. Your love and prayers are greatly appreciated!

Just for fun, here's a little pictorial update:


Fun at the beach...Silver Beach, of course!

Mother's Day:

 A sweet cake for Diana and me, who was visiting with my brother, Thomas, and Noah, my nephew.

Jeff and the girls took me to a Mexican restaurant right on Lake Michigan. The view was free. :-)

Visiting a friend's kitties:

My animal lover.

 It doesn't get any cuter than kittens!

 Emilie enjoyed the kittens.

 Alyssa certainly enjoyed the kittens.

 Clara could nurture a fence post, but prefers kitties.

 And Megan.....well...she has her own special kind of touch.

Church party:

 Clara in the hammock with one of her buds. These two are two peas in a pod!

 Just a really cute picture that I love. (Pay no attention to the primping teenager in the background.)

We're sharing a garden with my friend, Angela, at her house:

 

Planting time

Memorial Day with the American Heritage Girls in the Buchanan Memorial Day Parade:

 Before the parade...

 Ready to go!

We marched right behind the Boy Scouts.

This whole family put their hands over their hearts when the scouts walked by with the American flag (Dad put his hand down before I could get my camera out.) It was one of the most touching things I've ever seen. It's always a blessing to see patriotism in action.

Have a blessed day!

Much Love!!
Jeannie