In my life B.C. (Before Children), when I used to be a music teacher, one of my favorite songs to teach to the younger children was a song by Hap Palmer called Oh, What a Miracle. There was a lot to the song, but the chorus went:
Oh, what a miracle.
Oh, what a miracle,
Every little part of me.
I'm something special, so very special.
There's nobody quite like me.
When I think about Clara's life, especially today on her 5th birthday, this song keeps coming to mind. Oh, what a miracle she is. I have learned so much in her life and have been so inspired by her strength and determination. More than anything, I am in awe of the Creator of the universe who chose to put this fabulous little creation into my life. "He formed her inward parts; He knitted her together in my womb. I praise Him because Clara is fearfully and wonderfully made. I know that full well. (Ps. 139: 13-14) There is nothing about Clara that is a mistake, an oversight or an accident. I know, with all my heart that God has big plans for this sweet girl, and heaven knows, I love her more than life itself.
Happy Birthday, Sweet Girl!
Clara has had a very dramatic birthday week, to say the least. We knew that she would be going to the geneticist at the U of M on her birthday, because that was the closest appointment they had, and we had to wait four months for that one. However, we did not know that she was going to be Superman on the swing and knock her front tooth out. The night that happened we went to the E.R., where they started her on an antibiotic and told us to call the dentist in the morning. When we called, our dentist referred her to a pediatric dentist in South Bend. Despite his very full schedule, he was willing to work us in. At first he was puzzled that her whole tooth fell out, and when he saw the tooth, he was afraid there was some left in her gums. There was a lot of root attached to the tooth (more than I have ever seen), but he said there should have been more. He also was puzzled because for the way it came out, there should have been much more trauma to her gums. Upon doing an x-ray, he found that her front teeth have very short roots...all of them. I asked him if it could anything to do with the Hypophosphatemic Ricketts (made sense to me since it is all bone related), and he said, "BINGO!" (He was a very high-energy fella). He said that children with that condition have short roots and usually lose their baby teeth faster and easier...so be prepared. He also said that the Ricketts puts her at higher risks of abscesses. He said they are usually very manageable, but we need to keep an eye on her mouth.
So, PRAISE GOD she is okay. I am thankful that she was not hurt worse and didn't break anything else in her body, and I am thankful for the new information.
When we left there,we went straight home, picked up the rest of the family, drove to Buchanan to drop the dog off with some friends, drove to Berrien Springs to drop off three of our children with some other friends, and then drove to Ann Arbor to go to Clara's appointment.
The short version of that appointment is that we LOVE that doctor and we are getting MUCH closer to answers. He is running some further gene testing before he makes a definitive decision, but right now, he is leaning the same way as her geneticist in Atlanta, Dr. Kendall. I will elaborate further when I have more information and after I have had a little more time to process what we were told. We left the main U of M hospital building and went to another U of M doctor at her office across town to have Clara fitted for orthodics. I think Miss Clara is well on her way!
Tomorrow I leave for the United Mitochondrial Disease Foundation Symposium that just happens to be in Chicago this year. I have been a little torn as to whether or not I should go, but have decided that knowledge is good, whether we end up needing that specific knowledge or not. Insurance will cover the symposium and gas, so that definitely helps! I am looking forward to seeing some sweet friends that I have met on the Mito Road. Mito Mom will be there, as well as a Mito mom I have met, and become friends with, through this blog. I am excited! (...and very, very tired.) :-)
Of course, Sunday is Father's Day, and it looks like we will be celebrating at a horse show. The therapeutic ranch where Clara rides is having a show and the therapy kids are riding on Sunday morning. We typically do not let our kids participate in ANY activity that interferes with church, but we are making an exception for this one. The opportunity for her to ride in a show does not come around that often and she LOVES it! Alyssa will volunteer, as well, so I think it will be a fun family day. Of course, we will honor the Daddy in this house, too. It just may come later in the day. :-)
Just as an insignificant side note...apparently I still do not speak 'northern-ese". Did you know I have a southern accent? It was news to me when I got here! It is still not uncommon to get 'Sprite' instead of 'fries' at a drive-thru, but when we were in the E.R. the other night, the patient representative kept asking me my name and writing "Janie". While I love that name (and have an aunt whom I adore by that name), I did have to chuckle. :-)
Thank you, from the bottom of my heart, to all of you who remember Clara and our family in your prayers. Please keep praying...we are getting close to answers!!
5 hours ago