Finding Our Strength

 

Well since my last post things have started to get harder for Madi.  We had our most recent clinic visit on Tuesday and we were so excited to see 31mm of new bone growing!!  Madi was so excited to move into smaller shoes!  With all of this progress though comes harder therapy.  Because Madi's bone is getting longer the stretches and exercises are getting harder and more painful for her.  This was expected but still not easy to watch.  Its even harder when I have to do the exercises with her.  It literally takes every bit of strength I have to bend her knee to a 90 degree angle while she is pushing back and screaming "you're hurting me mommy".  It kills me each time but she holds no grudges with me and seems to understand that we just have to do it.  As soon as I am done she grabs on to me and hugs me.  She really is the strongest person I have ever met!!  Pin care is much better now thanks to one of Paley's PA's (Servando's) suggestions.  I can't thank him enough for all of his help.  Madi really doesn't mind pin care at all now.  Its still a long process but its getting better.  Madi's nerve pain in her foot is getting better and really only bothers her when she walks too much or at night when we put the knee bar in.  The knee bar holds her leg to full extension during the overnight and a couple of times throughout the day to stretch her muscles.  This puts extra strain on  this nerve.  We are able to control it during the day with heat packs and she only takes pain meds at night. 

31 mm of bone growth!!

  We also try to squeeze in fun things for the kids to do.  They love going to the outdoor mall that has a carousel and a train for them to ride and then we usually treat them to some Fro-yotopia!  We also got to meet lots of new friends at the Paley Nova night this last week.  The Nova psychology doctoral students came and we separated into groups of parents, patients and siblings and got some much needed support.  We also took the kids to a local restaurant to see a balloon guy that comes each week and makes the most amazing balloon figures.  They had a blast. 

Ariel Balloon

 

Feeding Stingrays

 

Getting dolled up for church

  There certainly are ups and downs but Madi really is handling everything so well.  I would say she had more good times then bad.  There are times when she has emotional melt downs but I think its just that so many things are not in her control right now and that frustrating for her. 

Tired and frustrated from exercises

I can sympathize with her.  This journey is testing every bit of strength I have.  I put my mom face on and do the stretches and give the motivational talks but I still have my moments where I just need to go to a room and cry.  Its so hard.  My job as a mom is always to protect my child and keep them from pain but here I am inflicting it.  I just keep reminding myself that its the best thing for her in the long run.  I know it is and God just keeps giving me the strength that I need to forge ahead.  More to come soon.
  Thank you all for your prayers and support. 

 

My beautiful girls!

  

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!

Feeding sting rays with Daddy!!

Madi's fixator which she named Arcee.

Waiting for my sister and Nana and Papa at the airport!

Who says you can't have fun at the park with a fixator on!



Love swimming with my big sis!

Enjoying the zoo!

Look how strong we are!