Madi's Milestones with PFFD: Ups and Downs

Using the walker when we got home from the hospital!

I would have thought that I would have more time to do blog posts but the days during lengthening are long and exhausting so I apologize for the delay in posts. When I left off we were still in the hospital waiting to see if Madi's blood counts went up or down. Well, the next morning they had gone down so we settled in for another day at the hospital while she had a blood transfusion. I must say, as soon as she got that blood she was a new person. By the next morning, we got the good news that we could go home. As soon as we walked into the townhouse, Madi surprised me by asking for her walker. She took off from there and has not been slowed down since. A few days later we had to say goodbye to Daddy which was so hard. Madi started sobbing the minute we walked into the airport and insisted we stay to watch his plane leave. We had a few days on our own and then she was so excited to go back to the airport to get Julia, and Nana and Papa. I was excited too! It was a lot of work on my own and I missed my Julia terribly! Since then our days have been full. Our days generally follow this schedule: breakfast, 1st fixator turn, physical therapy, lunch, 2nd fixator turn, swimming or some activity for the kids, exercises, bath, pin care, dinner, 3rd fixator turn, exercises, snacks, 4th fixator turn, bed. I am exhausted by the end of the day.
Madi is doing really well considering all that she is going through. I can't imagine how difficult it must be for her and I would give anything to do it all for her. So far she is still managing to get 90 degrees in her knee bends but they are getting harder. The knee bends are done on her belly and I have to hold her down while I bend her knee up to stretch her muscles while she is pushing back at me and screaming. This is the most difficult exercise and the one she hates the most so we always do them last and have created our own treasure box that she gets to pick a treat from if she does her knee bends. The other part of the lengthening process that is difficult is pin care. We usually start with either a bath or shower to allow the gauze dressings around the pins to get saturated, making them easier to remove. While she is in the tub, I remove all the dressings and then wash the pins with a baby washcloth and antibacterial soap or baby soap. Then Madi gets to play while I get the pin care area and supplies ready to go. When I get her out I lay her on the bed and inspect the pin sites for drainage or debris and then remove what debris there is with sterile qtips or surgical tweezers. She hates this part. When the sites look clean I let her air dry for 20-30 minutes. Then we have to wrap them back up. She hates this part too. All of the pin sites but the knee need to be wrapped snug to help prevent friction with the skin and pulling them tight hurts some. By the time I am all done a good 2 hours or more has passed. Its a long, tedious process but so far all looks good.

15mm!!

We had our first clinic appointment with Servando this week and it was amazing to see 15cm of new bone growing in on her xrays. Wow!! He said everything looked great and Madi was doing so well. The day before this appt, Madi had started complaining of pain in the top of her foot pretty badly. I asked about this and was told that it is probably nerve pain and if it continues to act up they may have to go in and compress the nerve. By the time we got to physical therapy after our appt she was in so much pain in her foot that we couldn't do too much at therapy. Our therapist was great though and recommended some techniques to help ease the strain on the nerve and so far it seems to be working.
We appreciate all of the prayers and support we have been getting from all of our family and friends. This is not an easy process, both emotionally and physically, but Madi is so strong and I know she can do this! We have met so many amazing families here that are going through the same things and their support has been amazing for both Madi and me. I will continue to post more as we go through this journey. Things will start getting harder from here out as Madi's bone continues to grow so we appreciate any and all prayers for Miss Madi! Thank you!