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.)

A beautiful Season

Lexi's first day of first grade.

A rare family picture with all of us smiling! :)

The boys on the property getting ready to head to farm preschool.

Lexi with her kindred spirit Kathy

Celebrating Christmas with the two families together.

Baby Parker

The year Lexi went to first grade our family was going through a lot of changes. We sold our house and moved into an apartment above an old barn while we were having a wheelchair accessible home built in Sandy. Lexi's ladies had moved a few months before us and it was actually their barn apartment in Damascus that we were staying in. The apartment had everything but a full kitchen. Since we didn't have a stove I took turns with Gayle and Kathy, making dinners for both families at the main house.

During that time I was pregnant with my fourth baby who turned out to be another boy. We named him Parker Elliot Tatro. While Lexi was at school all day Caden was going to a farm preschool a few mornings a week and Chase was my little toddler sidekick.

We were given much grace in that busyness and Lexi's health was the best of her life. She was able to go to school most days and rarely missed for being sick. This was HUGE!!! In Kindergarten Lexi missed more school than not. With this season of health she was finally able to start using her energy to make some progress on learning new skills. Everyone at school was gaga for her. She was joyful and so fun to be with. It was healing for me to be able to enjoy my daughter without a cloud of sickness and fear hanging over us.

We loved living literally right next store from the ladies which meant that we saw Lexi and shared her care with Gayle and Kathy every day. Since there wasn't room in the apartment she slept in her bed at the main house every night but we did bring her up often to hang out with us in the daytime and we went over there a lot as well.

That pregnancy I couldn't lift Lexi at all. She was a 6 year old and over 40 pounds. That was frustrating for me. It was also the deciding factor to have that pregnancy be my last. Other people probably think 4 kids is more than enough but Daniel and I had always wanted a big family and it was a hard decision to make. I wouldn't say it was really what I wanted but it felt like the responsible choice. After 4 c-sections and knowing that every pregnancy would leave me unable to care for Lexi on my own we were in agreement that it was the right thing to do. Maybe because of that I enjoyed my 4th pregnancy more than any of the others and wasn't in a hurry for it to be over.

Making decisions for the new house was incredibly stressful, especially with Daniel working crazy overtime during Occupy Portland. The apartment was the smallest place we had ever lived in as a married couple and at that point we had 3 kids. But the ladies lived on property and the boys spent a lot of time outside climbing trees and riding their power wheels. Caden's imagination was developing in fun ways and he was always going on some sort of adventure. Gayle and Kathy became grandmas to the boys as well and the boys loved to go spend time with them. It was also wonderful for me to have adult conversation any time I wanted.

I will always remember those 6 months in that barn apartment as one of the happiest times of my life. It got much harder to stay there once we had a newborn and I was more than ready to move when we did but I will be forever grateful for those joyful memories made during that time with Lexi.

Unfortunately that beautiful season did not last. Life was about to get very painful for Lexi and our whole family as a result.