Wednesday, March 17, 2010

Clara and Her "Boy"

Over the past 2 1/2 years, we have been SO VERY thankful for all the wonderful people God has put in Clara's life. Family and friends who have loved her beyond measure and prayed for her faithfully every day. Doctors and therapists who have provided the best of care for her. Ten years ago, I am sad to say that I couldn't have even told you what a physical therapist did, and now, ten years later, we love our physical therapists so very much, and we know that what strength and skills Clara has gained have been largely due to their expertise and time spent with her. As far as doctors go, we really feel like God has provided the very best for her. We LOVE our pediatrician and have been very pleased with the other specialists she has visited (and there are many). But of all the doctors we have, her favorite is Dr. Berenson, her neurologist. She and Megan "play" Dr. Berenson, she talks about him between visits, and this morning as we were getting ready to leave, she told Megan that she was going to see her "boy". She informed her Daddy that she wanted to eat lunch after she saw Dr. Berenson because her pretty dress might get dirty while she ate. After one visit she looked at her Daddy during dinner and said, "Dr. Berenson is soo 'bery' cute". Okay...well not only is he "so cute", but he provides great care for her.

Today was kind of a big visit. Now that we have all of her test results, it was a time for him to talk with me and Jeff about her disease and the implications of it. He would not speculate on her future...he said there is too wide of a range...and so I have decided to not think about her future, but to think about each day and let it "worry about itself". He was, however, very pleased with her progress over the last few months. She has gained a tremendous amount of strength and balance since he saw her last. He is concerned that she is still not running....but we are getting there! She is pedaling a bike...that's HUGE...and she is making great progress at going up and down stairs while alternating feet. Since we began her CoQ10, she has an increased amount of energy and rarely wants to lay around...or be quiet since her mouth has more energy, too. :-) So all in all, it was a very successful visit. No urgent concerns for now. She had her yearly EKG and is being set up for her yearly visit to the eye doctor (heart problems and blindness are two common problems for Mito kids).

Finally, anyone who thinks that Chick-fil-A is just a restaurant is wrong. It is not a place we can eat often, as Alyssa and Emilie are both allergic to peanuts and peanut oil, and Megan can't be exposed until she is 3 years-old, but on doctor visit days, we try to always take Clara. It is special for her because 1)She has us all to herself and 2) Right now, she is the only kid in the family who can eat there (and her mother loves it more than any food in the entire world) :-). We have found one in particular one exit past Dr. Berenson's and they have been wonderful. After one visit where we had received some bad news, I was by myself with Clara and quite frankly, behind my smile, I was on the verge of tears. One of the employees went out of her way to wait on us, get us refills and even brought Clara a coloring sheet and a free ice cream. Today, the manager gave her a little St. Patrick's Day cow and sat at our table for a few minutes to talk to us. So for us, not only are they a restaurant with the most fabulous chicken sandwich EVER, they are a ministry. We told them that today and I pray God continues to bless them.

So those of you who are dying to know how cute Dr. Berenson really is, here is Clara with her "boy":

Here is the chandelier at his office that Clara calls the "purple Christmas tree". She can't figure out why they still have it out, but she loves to look at it. :-)

Speaking of people Clara loves:

Her physical therapist, Ms. Leigh (or Ms. Leigh-Leigh to Clara) whom we adore and who also happens to live in our neighborhood. :-) :

Work those steps, girl!!

Her physical therapist, Ms. Peggy, is standing right beside her with the other volunteers at "Butterfly Dreams Ranch". We are so very thankful to everyone involved. Without them, Clara would not have this wonderful therapy.

And of all the people God has put in her life, I think this one was especially for her:

Everyone needs a sister like that!!

Please pray for Jeff this week. He has had some pain in his arms and foot that is job-related, and this week for him has been spent at the doctor, physical therapy, and at home. Please pray he will heal quickly and that Frito-Lay would be gracious to him.

As always, thanks for your prayers!!!



  1. Praying for you! Glad to read an update and catch up a bit on what is going on...God blesses!~ Love you!

  2. Jeannie,
    Words escape me right now, but I do think of you guys, and Clara, often and I think you are so right, don't think about her future, just take it day by day. The Lord has a special plan for her life and He will be glorified through her life! People will see Jesus through Clara, and I have a feeling she will make sure she tells them about him. We love you guys!