So Much To Be Thankful For

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.

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.

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.

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!"  

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.

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.

Thank you Dr. Paley!

Look, no fixator!

All healed!

Seeing A Light At The End Of This Tunnel

 I had anticipated doing a lot more blogging than I have done here but what can I say,  the days are long and exhausting!  Since my last post lengthening has continued to get harder and harder for Madi.  We have been able to maintain 0-90 degrees range of motion in her knee but that has meant lots of pain for Madi.  She now has so much anxiety about therapy and home therapy that she has been getting sick before her knee bends.  She frequently cries all throughout her hour of office therapy even when we are just doing fun things like playing soccer or throwing a ball.  All she can think of are the knee bends that are coming.  We are trying Valium before therapies but so far it doesn't seem to be helping.  Its so hard to see her feeling like this.  I keep reminding her how close we are to stopping the turns and telling her that it will get easier when we do stop. 
   I don't mean to make it sound like Madi is miserable 24 hours a day.  She is not.  She really is doing so well!  When we aren't doing therapies she is a happy little girl.  She does get tired easier but who wouldn't carrying around a huge weight on their leg all the time.  She had her spirits lifted last week when we surprised her with a visit from Daddy!!  We had lots of fun and even got permission to take a day off from office therapy so we could have a whole day with Dad!  Now we are just counting the days until our next xrays on the 23rd and hoping that we will get the good news that we can go home!!  

42mm

 
 

69mm



56mm

This is Amazing!!

   Right now we should be near 77mm of bone lengthened.  We keep turning until our appointment on the 23rd which should put us over 80mm of new bone gained!!  We are so close and they predicted that if she maintains her range of motion that we will probably be released to go home!!  We are so ready!  Its so incredible to see how much different her leg looks.  She is so amazing!  I am so proud of her!  Thank you all for your prayers and keep them coming!  We are so close and we can't wait to get home and see all of our friends and family and show them her new leg!!  I will post again after our next appointment.

Loving some time at the ocean!

Her awesome gift from a fellow pffd friend.  The dog has a shorter right leg too!

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!

Our Lengthening Journey Begins!

Well, here we are in sunny Florida.  We arrived after a three day journey of 26 hours of driving that started on Friday and ended on Sunday.  We were all ready to be out of the car and enjoy a couple of days of fun before pre-surgery appointments began.  Tuesday we had our pre-surgical appts and realized just how aware of everything Madi now is.  As soon as we entered the room with the nurse she looked at the blue chair where they do the blood draws and began to say "no shots", "I want to go home".  She clearly remembers everything now which she hasn't in the past.  That makes it harder.  We ended up having to wrap her up in a blanket and hold her down just to take some blood.  It was awful.  So hard to watch your child so scared and remind yourself that its all in her best interest.  After we finished our appts we had half of a day to play.  Madi really wanted to swim since the last two days were rainy so we took her swimming and then to get ice cream and ride the carousel and train at the mall.  We had a fun night.  We kept her up as late as we could to get food in her tummy as close to midnight as possible.  Wednesday morning arrived and we were surprised to get a phone call asking us to come in an hour earlier than we were supposed to.  There was a cancellation and they were ready for us.  That never happens!  When we told Madi it was time to go she said "no, I don't want to go to the doctor!"  She was really nervous.  We got to the hospital and were taken back pretty quick.  I could tell she was scared but we kept reassuring her and she relaxed a little when they gave her a dvd player to watch some Strawberry Shortcake. 

Our time to go back came quickly and I dressed in my "bunny-suit" to take her back to the operating room.  Unfortunately they gave her the "goofy juice" too late and it hadn't taken effect yet.  She was very scared but I stayed with her every step of the way.  She fought the mask with the anesthetic and was crying so much.  It was so hard to watch as a mom.  I just kept talking to her and reassuring her that everything was ok and that I was right there.  When she drifted off to sleep I gave her a kiss and took her bear and was walked back to the pre-surgery room sobbing.  I've done this for four surgeries now and it never does get easier.  Mikey and I settled in the waiting room for the long wait.  They ended up taking her back to the operating room at 11:20am and around 5:30pm Dr. Paley headed out to tell us that everything went really well.  Her fixator was on and he did end up having the fixator go up to her hip so that the extra pins would help protect her hip joint during the lengthening process.  We knew that was a possibility and I figured anything that protects that hip that we worked to hard to make was good with me.  He also removed the 8 plate that was in her femur and put a new one in her tibia.  We were able to go see her in recovery a couple of hours later.  She was smiling and happy!  She always wakes up from surgery so peacefully and for that I am grateful.  She just kept saying she loved us and telling the nurse all sorts of random thoughts.  The nurse was amazed at how well she was doing. 

We got settled in her room shortly after and settled in for the night.  She had a good night and got some sleep.  The next day she seemed really nervous and scared.  She just kept crying but when we asked her if anything hurt she would say no.  We soon realized that she was hurting but not telling us.  We got her started on the pain meds and then she started having the muscle spasms.  The spasms would jolt her whole body and were very painful for her.  We started her on the valium and it helped a little.  Physical therapy really wanted to get her up into her stroller for a little while so Mikey picked her up and got her in the stroller.  She was nervous but didn't seem to have too much pain with it.  It was good to see her up and take her for a little walk to get some fresh air.  After we got another dose of valium and continued the pain meds the spasms seemed to get much better.  Madi slept most of the night last night and felt really good in the morning.  Madi got to meet three new friends today which made her really happy.  Two of them have fixators just like she does!  We even got her to stand up with physical therapy and take a couple of steps with the walker.  She was so brave.  We got her in the stroller again and all she wanted to do was walk and go see her new friends!  Madi decided to name her fixator Arcee.  For those of you who don't know, Arcee is the female transformer.  She loves watching that cartoon with her dad and sister.  She is still so excited for Arcee to make her leg longer. 

We are hopeful that she will be able to get out of the hospital tomorrow.  Her blood counts have been low the last couple of days and there is a possibility that she may need a blood transfusion.  We will see when they get the next labs done in the morning.  For now she is doing well and she is anxious to get back to the townhouse.  Thank you to all of you who are praying for Madi.  We are so blessed to have such a huge support system. We are also so thankful for the new friends we have met here in the hospital and it feels good to know that Madi will not be going through this journey alone.  I will post again when we know more! 

So Much Support For Madi

   Wow, time is flying by quickly.  I feel like I am in a whirlwind getting ready for Madi's lengthening.  I am just checking things off the list one by one.  We are happy to announce that we have our first fundraising event planned for Madi thanks to our amazing friends at Saints Pub +Patio in Beaverdale.  We have a fun night planned with a silent auction and raffles, karaoke, and  t-shirts and bracelets for sale.  It will be family oriented and there will be activities for the kids.  If you would like to participate the event is at Saints on Friday April 26th from 6-9pm.  We have already had so many generous donations for our silent auction/raffle and we are working on accruing many more.  Thank you to all who have donated and who continue to spread the word for Madi.  All of your help has truly helped to take some stress away from us while we are planning this long ordeal and will continue to allow us to focus on what is most important, taking care of Madi and our family. 
    If any of you  have items/services to donate for the silent auction/raffle, please message me on the blog. 

   As far as Madi goes, she is as carefree as ever.  Just the way I want her to be right now.  There are so many times that I just stand by and watch her and revel in her spirit and strength.  She is just so amazing!  I have been thinking about having some photographs taken of her before we go. I just want to have a memory of what she looks like right now, with her shorter leg and all because to me she is perfect and if  I thought for a second that this condition would not affect her life in the future, I would never have this surgery done. I love her leg the way it is, it is my Madi.  But I know in my heart that this surgery will make her life better in the long run and will make it so that one day she won't have to deal with prosthetics and shoe lifts, pain or trying to find shoes that work.  Madi has not been wanting to wear her shoe with the lift and the brace lately.  She wants to wear "cute" shoes.  Shoe's that are dressy or sparkly or the cool boots that are now in style.  So I will be thrilled when she can finally wear some of them all the time. 

  Last but not least, we want to thank everyone who has helped and are helping right now.  Whether its sharing this blog or our fundraising page with your facebook friends, donating money, donating for auction/raffle, contacting companies for donations, organizing events, asking what you can do to help or just sending your prayers.  We are eternally grateful!  We are feeling so much love and support right now and all of this will help us get to our goal...to get both Madi's feet on the ground!! 

Lengthening is coming soon!

A healed hip!

    So we had Madi's new x-rays taken near the end of February and I sent them off to Dr. Paley hoping for healing in Madi's hip.  Dr. Paley emailed us promptly letting us know that Madi's hip
 has healed and she is ready for lengthening.  Praise God!!  It has been such a long, hard road for her that I wasn't quite prepared to hear that she was ready.  The even more surprising news was that she needs to get started with lengthening this summer before she turns 5.  So here we are getting ready for Madi's first lengthening which will be on May 22nd.  I am so overwhelmed.  We really thought we would have more time to prepare for this.  We are now trying to set up some fundraising events and have also set up a fundraising page at http://www.youcaring.com/medical-fundraiser/Making-Miracles-for-Madi/44841    I am working on finding a rental for us to live in and also working on insurance approvals.  So much to do in such a short period of time! 
    Here is what Madi is looking at this summer.  She will have surgery to break her femur bone and have an external fixator put on that has pins that go from the outside of her leg through the bone in different spots.  There are screws that will then be turned by us several times a day to slowly pull the bone apart to allow for new bone to grow in between. Our goal is 8cm total but this depends on how physical therapy and healing progress.  She will have land physical therapy 5 days a week in the office and everyday (twice a day on weekends) by us.  She will also have pool therapy 3 days a week, hopefully.  The therapy helps to keep Madi's range of motion in her hip and knee and also aids to lengthen the muscles as well.  It is not easy and can be very painful for the children.  This is the part I am dreading the most.  Madi has always been so brave and strong so I am hoping she will do better than I can anticipate.  We will do all of this for about 4 months in Florida.  After that we will come home and let the bone consolidate while she is still in the fixator.  After a total of approximately 8 months, we will go back down and have the fixator removed and a rod will be placed in the bone to stabilize it.  This will be a long year but it will be worth it. 

The Strongest person I know!

 
 
   Madi is so excited to have her "little leg" made "long".  She can't wait to go back to Florida and see her doctors and asked everyday if we need to get our bags packed.  I love that even after all that she has been through these last 2 years that she has no fear of her doctors, just excitement and love.  I admire her so much!  I am praying everyday for strength and peace.  I have faith in God's plan for her and am being reminded daily by him that we are on the right path.  We ask for prayers as we get ready to embark on this next step in our journey with Madi.  If you would like to donate to Madi's care, there is a "donate" button on this page, you can visit the fundraising page, or donations can be taken to any U.S. Bank and deposited into Madison Willcox Benefit Fund.  Thank you to all of our family and friends for your prayers and support.  We can't do this without you!