the hip bone's connected to the metal plate

Lexi's new princess room!

Getting lots of love. :)

Let me just say, having a wheelchair accessible house for our daughter ROCKS! There are many little stresses that can become big stresses like back problems when you don't have what you need to accommodate a growing person who will always have the same level of needs as a newborn. It's also pretty awesome to live in a home that is new and picked out just by us. Our house is gorgeous and even now 3 years later I think at least once a day, "I can't believe I live in such a beautiful home!" I would still trade every material thing we have for Lexi's health but it's nice to be more than comfortable on days that are hard.

As I said in the last post, Lexi was enjoying a uniquely wonderful season in her life filled with health during first grade. We were still meeting with her specialists every 6 months for updates on her various issues and her orthopedic doctor told us her hips were being troublesome again which we knew was going to be a lifelong struggle for her. We decided to schedule her 3rd hip surgery in the spring to have the plate and screws removed from her hips as well as fix things in there as best he could.

We didn't even really question this surgery. Her 2nd one we agonized over and it made such a positive difference that I think I had unrealistic expectations for all future surgeries to go just as well. I do remember having doubting thoughts as the time got closer because Lexi was so happy and I knew the recovery would be hard. Anything that's going to cause Lexi pain is scary for me.

What I didn't know is that surgery would change the course of Lexi's health for the next several years. The surgery itself went well but the recovery was a nightmare. Lexi was in a body cast for the 3rd time in her life but this time she was much bigger and the cast was much heavier. It caused painful sores on her and we had to go in several times to get the cast cut back away from her broken skin. She also seemed to be in pain for much longer than previous surgeries. After 6 weeks she got her cast off only to find that her incision was not healing. The doctor had to cut her open again and flush out the wound. He thought it would be best to leave it open to heal and we spent another 6 weeks packing her open wound at home with sterile gauze twice a day.

There was basically a big hole in her hip that we filled with gauze. It was very weird and I had only seen something like it on television or movies. Now there is just a dimple where it once was.

Lexi fully recovered but she lost many things after that. She could no longer lay on her stomach at all without pain. This was difficult because Lexi always slept best on her stomach. It also helped her keep her airways clear at night and not aspirate on her saliva or throw up. She lost the ability to comfortably sit in her wheelchair for more than an hour. Taking her places and school became a lot more difficult. Now it's common to give her pain medicine as a precaution before going anywhere. But the biggest thing it took from her is that her immune system completely stopped doing it's job.

We were about to enter the pit of despair.

(I was trying to think of something to convey how horrible the next year was and the only thing that came to mind was the pit of despair in "The Princess Bride." Dramatic, I know.)