Wow, I didn't realize it had been so long since I last posted. We are all doing well. Molly has been talking more and walking a lot lately. We have noticed that she has been limping more. I had assumed she was limping because of increasing bowing in her right Tibia, but upon further observation it is the left leg that is bothering her. We had X-rays taken in December and Dr. Esposito noted that she has a non-union (a fracture that has not healed completely) in that leg. She has started complaining of pain in that leg and pointing to the spot with the fracture.
I emailed Dr. Esposito today and he called us back this evening - what an amazing doctor. He said that if the leg is starting to bother her so much that we should have some X-Rays taken and try and schedule the surgery when his schedule allows. I know that this is the right thing to do, but it is terrifying to prepare to go through that process with her again. He said if it is hurting her more and more that there is a good chance that it will fracture completely if we don't do surgery. So... I think she will have surgery on her two tibias in the next month or two. Yuck.
Molly and I were at Lowe's today getting a part for the shower and she was in her wheelchair - doing amazingly well navigating all around. A woman in her 60's came up to talk to Molly and said that kids with special challenges have a special place in her heart. She shared that she had a baby with a congenital heart defect that only lived 3 months. I asked if she had any other children and she said the doctors wouldn't let her have any more children due to her diabetes. It gave me a whole new perspective on how parents cope with their children's diagnoses. Given the choice between a child with a profound disability and no child at all, I think most people would choose to have a child with a disability. I know we all learn to appreciate what we have, but I was having a hard time imagining how parents cope with their severely disabled children. Speaking with this woman gave me a new appreciation as well as respect for families with disabled children.
We have had a good few weeks. Molly has been having some temper tantrums, which are scary at times. She is quite dramatic and she and I are sometimes battling over her daily routine. We went to a book store last week and they had someone in a Clifford costume, which was quite traumatic for Molly. She waved at him very energetically, but didn't want to get to close and was terrified to be closer than 20 feet away. She has told the story over and over of seeing him and does so with an almost manic demeanor. Her eyes start to bulge and she speaks rather quickly, recounting that she waved to Clifford and said "Hi Clifford", but she didn't touch him and his tail "wagged back and forth". She tells the story over and over and it is adorable!
Here's a picture of Molly talking about Clifford's tail:
My Mom was in town last week and Molly and I got some well needed time apart. I also got to go to the NC beach on Monday and Tuesday to spend a couple of nights with a group of women. It was so nice to go to a different location. The weather was gorgeous and I loved listening to the waves and breathing some of that wonderful salt air.
1 comment:
Hi Sarah
My name is Amy and I have a 4 year old son Oliver that has type 4 OI. I read about your blog in the OI foundations annual report today. We are very fortunate because Oliver has a mild form of OI. It wasn't always this easy....his diagnosis was a nightmare. When Oliver was born we had no idea that he had OI. At 5 weeks old he broke his left femur. Needless to say the Drs at Childrens Hospital Boston (yes, one of the best childrens hospitals) were so sure that we (my husband and I) caused the break, they wouldn't even run the appropriate tests to determine Olivers diagnosis. To make a very long story short, Oliver was put in medical foster care for 3 months. It took us that long to fight the state and finally the appropriate tests were run (after he suffered a tibia break in foster care) and his diagnosis was made. Oliver was returned home and the miracle is that since that time he has not suffered another fracture. When I look back at that time in my family's life, I don't know how I got thru each day. My friends and family were amazed at my strength and positive attitude. When I read about you and Molly, I see this in you. You are an incredibly strong, amazing woman who is the best Mom that Molly could ever hope for. I'm sure the stress and uncertainty of it all must take its toll. I am glad you have such good support and are actively involved with the OI foundation. I would love to be able to be more help to you and other Moms too. I feel very strongly about raising awareness about OI. At every Doctor appointment of Olivers, when we meet a new resident or intern, I tell them the story of Olivers femur fracture and tell them that this is the most important thing they will learn today...do not forget this! I am sorry I have gone on and on, lots to say I guess. Know that you and Molly are in my thoughts. I wish you all the best.
Amy Weiland
abweiland@cox.net
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