Sunday, September 16, 2012

Final Follow-Up from Our Visit With the Shriners

"Grateful" is an understatement for the way I feel about our visit to the Shriners Hospital for Children. Overall, I can't say enough good things about the care Clara received there and the experience we had with all of the doctors who are a part of her care team. The fact that they even work as a team, to me, is nothing short of marvelous. As ready as I was to go home on Friday, Clara was still not ready to leave. I think that is a huge testament to the environment they have created for the children. Even with a lot of the "yuck" she had to experience, the "fun and wonderful" way outweighed the yuck, and she loved it there.

I am in awe of the way God provided for us. I am so thankful for family who helped provide what we needed to be able to go. I am thankful for the prayers, notes, cards, dinners, gifts, and words of encouragement that were given along the way. I am beyond thankful for my friend, Elvie, who got me connected with her endocrinologist who got us connected with The Shriners Hospital. I am thankful for the new friends Clara and I both made at the hospital, and for a group of people who can really relate to our experience with bone disease. I am beyond thankful for the angel God sent our way to help us through the nightmare of TSA at the St. Louis airport. O'Hare was great. St. Louis....not so much. When all was said and done, we had Clara's adaptive stroller, and six, yes six, of those little gray bins full of stuff on that conveyor belt. (Why we had to fold up that contraption of a stroller and put it on the belt is beyond me. At O'Hare they just took it to the side and scanned it. MUCH easier.)

We left St. Louis with lots of great news and information, and a peace that I have not felt in, at least, five-and-a-half years. Peace in knowing we are finally in the right hands. Before we left, they changed the dosage of medication one last time, even since the last time I posted about it. They will be monitoring her via of blood and urine every three months until we return next September. If anything is ever "off", they will contact us immediately and deal with the issue. They didn't tell me this until we were about to leave, but the geneticist said that he was so afraid her kidneys had already started calcifying because of the large dose of medication she was on. Everyone was so relieved when her renal ultrasound came back normal. They are big believers in treating the kids over the whole course of their growing years, as opposed to treating them really quickly, so there is not so much damage later in life. Honestly, and I told the doctors this on the first day, I had been beating myself up because it was so hard to get all six of her doses in everyday. Now I'm glad that I wasn't always able to accomplish all six, and they are, too. They encouraged me and affirmed me in so many areas, because as a Mom, I always question, "Did I make the right decision?", and "Have I done all I can do?". They certainly felt we had seen all the best doctors and done all we could do based on the information we had been given up to that point.

The dietitian met with us on the last day, and while they were thrilled at the variety of foods Clara enjoys, they did put some limitations on her diet because of the way some foods interact with the phosphorous she will now be taking four times a day (instead of six....YAH-HOOOOO!). Her medication also contains sodium, so we have to limit that, too, which will benefit everyone. Thankfully we eat very little processed food, so it will be easy for me to control how much salt is being added to things.

The orthopedic doctors felt really good about her legs. She does have some significant weakness on her left side, but with lots of work, that can be helped. They recommended some exercises to do at home, in addition to some sports that might help her. They also fitted her for, and made, some orthotics and told us to get some really good tennis shoes for her. They believe that her alignment (or lack thereof) is what is causing most of her pain. Because her little legs are bowed, she puts a lot of pressure on the outside edge of her foot, which affects her knees, hips, and all the way up her body.

The geneticist feels that her muscle biopsy report does indicate that she has a mitochondrial disease. However, he, and everyone else, are puzzled as to why she looks so good. He has a theory about the way her cells have divided, yada yada, that was actually the best theory I have heard up to this point, but it is lengthy and I don't really want to type it all here. (If you really want to know, you can ask me.) Whatever the theory, I believe we have a great, big God who is still the Great Physician and can use whatever method He wants to heal her little body. I am thankful for answered prayer and that she looks so healthy!

I am extremely thankful that, for the first time in a long time, I had a doctor look me in the eyes and tell me that he expected Clara to live a long, healthy life. It will not be without pain and some trials, but whose is? There is no way to know if she will need hip or knee replacement in the future, but they felt very confident that she probably would not. I do grieve some for her future children, but I have to let that go and grieve when it's time. I am excited to move forward and just enjoy this precious little girl, and the other three precious girls, that God has blessed us with! The doctors have assured me that the treatment they have her on is state of the art, so we will continue to give that to her and do all we can to help her. Beyond that, we have seen God's hand so often in her little life that we know, have absolute faith, that He will continue to hold her.

I think that just about covers it. Hopefully I haven't left out anything. Just ask me if you have questions. I am so thankful for everyone who has taken the time to keep up with Clara via our blog, and there are no words to express my thankfulness for your prayers! We felt them, and they were answered!

Just for fun, there were a few pictures I didn't share from St. Louis. Enjoy. :-)

 Just about to leave for the airport.

 We saw a Delorean on the way to the airport. The license plate cracked me up.

The Arts & Crafts room at the Haven House had hundreds of paper cranes hanging from the ceiling. It made me think of Leslie.

This is the hospital gown Clara and I made together for her Bitty Twin. She was so proud of it!

We were at the Haven House for about 12 hours. In that time, Clara managed to make a friend. (She has a way of doing that.) She made her a card in the Arts & Crafts room, and the next morning, Ms. Lori left this note on the survey she slid under our door. I thought it was so sweet. :-)

One of the incredible aquariums at St. Louis Children's Hospital.

 She travels lightly. :-)

On Wednesday they had Pet Therapy at Shriners. Clara looked forward to that ALL WEEK! On Wednesday morning, the first thing she said was, "Mom! Today is 'Pet Physical Therapy' Day!" :-) I told her that she could bet her hat on it. :-)

 Such a nice dog.

She got to walk this one all over the second floor with another little girl who was in a wheel chair. This dog's name is Faith, which is Clara's middle name. I thought that was sort of neat.

Dr. Gottesman, her geneticist at Shriners.

Balloons and a bear from Papa and Grandma!

Ms. Beatriz, one of her dietitians.

Bingo night!

Ms. Valerie, Clara's nurse...her very own. :-) She was one special lady!

Clara and Shawn had to say, "Good-bye". :-( Such a sweet little guy.

Much  Love,

1 comment:

  1. Wow, I can hear the relief in your keyboard!!!! SO many prayers answered, adn like us, a kiddo with mito who looks pretty healthy!! Guess we need to keep our faces to Heaven in thanks!! Love you and so glad to read all this GOODNESS!!!