Regardless, as we have progressed through this week, there are some things I have found hilarious.
For one, this is the paper I had to fill out about our immediate and extended family on Tuesday:
I guess they know we're Dawgs?
Notice that I didn't fill in any blanks before I took a picture. You'll never know what it said when I was done. :-)
Another interesting thing: Dr. Gottesman, the very serious (and brilliant) geneticist that Clara has been seeing here rides a unicycle. Maybe that doesn't sound that funny, but I thought only clowns rode unicycles. He didn't find that funny. Although, most people in the north don't think things are as funny as I do....maybe that means I need to be a little more serious. It could be bad to think things are too funny, I guess.
The hat rack has been the most hilarious...but you know all about that already.
Something fun that happened today: The parents of one of my closest high school friends lives here in St. Louis! They came by the hospital today to meet Clara and to take me out to lunch. It was SO GOOD to see them! I had fun catching up on their family, but also, her Dad worked with my Dad at Eastern Airlines as a mechanic, so it was fun to talk "aviation" for a while. (Even though it made me miss my Deddy.) I have always loved them...such sweet people.
Mr. and Mrs. Hargreaves (and me...)
A little something sweet: Clara has become really attached to the little boy acros the hall from us. We have enjoyed getting to know his family this week. She is going to be sad to say "good-bye" to him.
A new skill: Clara is learning how to swallow pills. The tablet form of her meds is more accurate AND more convenient. We were mixing a packet of K-Phos with 3 ouces of water 6 times a day (in theory) to get in all of her medication. Now, we can hand her the tablets 5 times a day. MUCH easier. The best part for her: They gave her mini M&Ms to practice with. :-)
There are fewer updates today on Clara's medical issues. The orthopedic doctors came by to see Clara during their rounds today. The attending presented her case, and the head orthopedic doctor released officially declared that, from a surgical stand-point, she looks good. That's the official word. Not that her legs are perfect, by any stretch, but they are not serious enough right now to warrant surgery and they believe that after staying on her treatment through her growing years, her legs will be nice and straight by the time she is a teenager. Works for me!
Clara was also fit for orthotics today (that the Shriners will pay for...woo-hoo!), and we will probably have them before we leave. The only thing we have to do when we get home is get her a really good pair of tennis shoes. They aren't too crazy about her flip-flops or her Chucks. It was good while it lasted. :-)
I just took a break from typing because the rheumatologist came in to evaluate her. Guess what she said? "Clara needs a really good pair of tennis shoes. No more flip-flops." (sigh) It looks like we'll be shopping when we get back. This whole shoe/orthotics issue has always been a frustration to me . One doctor swears by them whole-heartedly. Another doctor says that it really doesn't make a difference. Some doctors say the orthotics do her more harm than good. But as of this week, I have decided that whatever they say at the Shriners Hospital is what we will do. Case closed. One more stressful decision checked off of my list.
They have also recommended some very specific exercises for her, in addition to some sports that would be really good to build up the specific muscle groups she needs to work on. I can't even think about all of that right now. I need at least two nights in my own bed first. :-)
Tomorrow will be the last time we meet with all of the doctors at one time before next year. After that, we will be discharged and will fly home. There is a very good chance I will not find time to blog, but I promise to update all the final results of everything once we are home.
As I leave here, I can't help but feel such deep thankfulness to the people who make this place possible. I don't have enough good words in my vocabulary to express how wonderful it is here for children like Clara who have been on a medical roller coaster their entire lives. This place gives hope. I have met some children with some of the worst deformities I have ever seen, yet they inspire me with their joyful hearts and positive attitudes. I look at them and think that most of us really don't know what it is to suffer, yet they do it without complaining. They have figured out a way to live their lives as fully as they can. I have also walked the halls here, thanking every Shriner I have seen...I think I have thrown a few of them off guard. I just can't help it. I am so thankful. There is a wall on the way to the cafeteria, that I pass at least 6 times a day, that is full of pictures of past and present Shriners. I pray for those men and their families, thanking the Lord for using them to make the lives of these children better. I pray for their families that support them and the time they spend fund-raising to fund the work that is done here. Obviously, I don't know any of their spiritual beliefs, but I pray that they all know Jesus.
I will never look at the red velvet hats the same again. Anytime I see those hats, if there is anything in my pocket, something will be going into that hat.
Please pray for us tomorrow as we meet with the doctors, that if there are any questions I need to ask, God will bring those to mind. Also, please pray that we will have safe travels. I can't wait to see Jeff and my other three girls tomorrow night! I have missed them!! And for the first time all week, I don't think anyone is going to mess with Clara's sleep...THANK THE LORD! She has been a GRUMPY MONKEY today!
Praying your night is wonderful!
Much Love,
Jeannie
No comments:
Post a Comment