Emmy's Medical Care

Our 8 year old daughter, Emmy, was born with Osteogenesis Imperfecta (brittle bone disease) Type III. Since she was born she's had over 60 breaks that we know about and more that just show up on x-ray without any other indication. The first week in August 2017, Emmy was standing to get on the couch and lost her balance. She fell on her left arm (her dominant one) which resulted in a broken humerus. Fast forward 2 weeks, Emmy was picking up a tube of toothpaste she had dropped and lost her balance getting back into her power chair, this time falling and breaking her right humerus. 

Tomorrow, August  27th, we are heading to the Mayo Clinic in Rochester MN to have surgery bright and early on Monday. The surgery is to install Fassier-Duval rods in both humeri. We were hoping to avoid rodding her arms, because other than being bowed, she has good range of motion and overall use of them. She has had both femurs and both tibias rodded and the osteotomies (cutting of the bone) take longer to heal than if she were to break naturaly (that sounds weird). The way things played out has just provided an opportunity to have the procedure done and potentially prevent more breaks in the future.

Katie and I have been very humbled by the outpouring of support and offers to assist in any way. We have tried very hard to be self-sustaining, but we want to provide friends and family with a practical way to help our family. 

The challenge Katie and I have is keeping Emmy comfortable post-surgery. Emmy is about 40 lbs. soaking wet, but with casts, there's an additional 5-15 lbs. In order to move Emmy, we often have to strain and contort our own bodies to get the leverage and grip we need to lift her safely and comfortably. Doing it once isn't a big deal, but doing it multiple times a day for 6-8 weeks takes its toll. A good friend of ours who has similar challenges recommended we aquire a hospital bed that uses an air mattress to reposition patients comfortably and to avoid getting bed sores. 

In addition to this surgery, we have one scheduled in December to replace the rod in her left femur (we replaced the right one in January 2017 after she fell out of a toddler bed and broke her leg). We think the hospital bed will be a good long term option for Emmy's care. As with any medical apparatus, they don't come cheap. 

Again, we are extremely grateful for the support and humbled by the kindness and generosity. We don't expect to reach the goal, but we had to put in something, so we decided to dream big. Help in any way you feel you can. If this isn't for you, a simple prayer or thought will be much appreciated. Despite these temporary setbacks, we believe that God has a plan for us, and we fully trust in it. That is, after all, how Emmy and her sister Angie came into our lives.


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Viet Doan 
Moorhead, MN
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