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| My Arcee toy! |
First, let me apologize for my long absence and for not updating as I promised. Things have been so crazy. When I last posted we were near the end of the turning phase and hopeful that we would soon be able to get home. On August 23rd, we had our x-rays and were so happy to see that Madi reached 86 mm of bone growth and we were told to stop turning and return home for our consolidation period. We were elated and so proud of Madi. It was and still is so amazing to think that she grew 8.6 cm of new bone in just 3 months. Wow!
Madi was excited to get home and we kept telling her to hang in there with her therapy and now that we were no longer turning that her therapy would begin to get easier. We returned home a couple of weeks later and we adjusted back into our lives. Madi started preschool and her friends were amazing and so welcoming.
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| First day of preschool |
We still had 3-5 days of physical therapy a week and that on top of school and Julia's soccer made for some crazy weeks. A few weeks after we got home we realized that there was something wrong with the pins below Madi's knee. I kept waiting for her PT to get easier but it was progressively getting more and more painful and we could feel that the pins below her knee were getting more and more loose. When I got a hold of the physician assistant in Florida and sent him a video of me moving her pins, I immediately got a text back to stop all therapy until we heard from him or Dr. Paley. I knew that probably wasn't good. I got the call a few minutes later that we needed to get back to Florida within the next week to replace those 3 pins. They said to not do any therapy until they were replaced because every time she was bending her leg the pins were moving out some from the bone and now it was a breeding ground for infection. Well, I learned a long time ago to always be prepared for the unexpected to I planned our trip right away. Madi and I left the next week for surgery. As soon as we arrived in Florida we were to immediately go to the clinic for x-rays. They wanted to see if there was any chance that the fixator was ready to come off, which it wasn't. While were getting our x-rays taken we learned that Dr. Paley had to leave the country unexpectedly but Dr. Prince would be able to do her surgery. Dr. Prince is amazing and I was surprised and happy when he came out and told me that in addition to replacing the knee pins, he also was able to removed the hip pins! Yay, 3 less pins to clean! She was released that same day and the next day we were on our way back home. By the time we got home she was up and walking with no pain at all. It was like she was a whole new person and that is how she has been ever since. So happy and pain free and the physical therapy was 100 times better.
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| Halloween fun! |
We continued our monthly x-rays and in November we were told that she was ready to have the fixator removed in December. It was the best Christmas present ever!! She was so excited, although she was not excited about not being able to walk for a month.
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| Getting to try the pilots seat on our trip back to Florida! |
We left for her removal on December 14th and got to enjoyed a couple of days of Florida warmth before surgery on the 16th. The night before her surgery I heard Madi singing Christmas songs in the shower and when I opened the curtain to check on her she was shaking her leg with the fixator and she said "Arcee's singing with me Mommy". So I asked her if she was going to miss Arcee and she said "Arcee will always be in my heart!"
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| Singing with Arcee |
She is so amazing and she decided that she wanted to keep Arcee so she could turn her into an art project. The next morning we went in for surgery. It was the first time she has ever gone into surgery excited and happy to be there. That was nice for me, although I still had the same anxiety I always do every time I have to take her into that surgery room. This time was different though and when they came out to tell me that every thing went well, it was like a small weight had been lifted. We did it. We got through this journey with the fixator. Something I questioned so many times whether or not I would have the strength to get through. The next day we went back to clinic for the dressing changes and she was so excited to go into the therapy clinic to see her therapists Mr. Mike and Lisa. For me that was so huge. When they go through so much in that clinic you think that they may never get past that. That "that place" will always be bad. It's just not so and to see her go in there so happy and excited to see everyone, that was amazing and brought peace to my heart.
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| So excited to see Mr. Mike and Lisa |
That brings us to now. We aren't quite done with this journey but we are getting there. We have two more weeks until we go in for her x-rays to see how the bone has healed and to see if she will be ready to start walking.
So there we are and like the title said, we have so much to be thankful for! To get 8.6 cm of bone growth in 3 months with no infections and never having to slow down turns is almost unheard of. All I can do is thank God for watching over her and giving us the strength that we needed to get through this. This has been one of the hardest things I have ever been through and Madi has been through so much more than any child should go through but she still has her same fighter, "Madi" spirit! Thank you all for your prayers and well wishes over these past 7 months. We still have many months of physical therapy to get back all of her range of motion but we are so close to getting back to our normal lives and we are so grateful for all our blessings.
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| Thank you Dr. Paley! |
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| Look, no fixator! |
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| All healed! |
