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!

Finally seeing bone growth!

First day of preschool!

I know it's been a while since I last posted and I have no excuses.  Madi is doing really well.  She started preschool in the beginning of September with her brace on so I had the pleasure of attending school with her for the first two weeks.  I really enjoyed that and Madi did so well.  As you can imagine there were some questions from the kids as to what happened to her but it is so nice how accepting kids are.  And they were all so excited when she got the good news that she could remove the brace and start walking.  Once that brace came off it was only a matter of minutes before she was on the go.  She is such a trooper and she really did so well throughout this surgery and recovery.  She was back to her old self quickly and never needed any physical therapy. 

Right after I got my brace off!

   We had her first xrays taken 6 weeks after her surgery and we were so pleased to see that she was finally healing in her hip.  The bone is coming together and it looks like we are finally on the track to lengthening.  We have her next xrays at the end of February and I can't wait to see what they look like.  Hopefully we will know more about whats next for her when we get those done. 

Finally healing in the hip.

Yeah!  New brace and shoes!  

Play time while I get my new brace!

    Right now we are just enjoying time without surgeries and recoveries.  After all, three hip surgeries and one knee surgery in only two years time is a lot for a child under 5.  Madi loves preschool and has made many friends there.  She is still my wild child and never lets anything stand in her way.  I love her spirit. 
   We had new shoes and a brace made for her once she recovered.  Its unbelievable but her old brace was the one she got when she was about 15 months old.  We got as much use out of it as we could but she was surely due for a new one and even got it made purple with butterflies on it.  She is styling now!  

Enjoying my new scooter!

  When we get new xrays I will update on Madi's progress.  Until then, we wish you all a very Happy New 

Year!

Third Surgery Complete and Glad to be Home

Ready  fly to Florida

Loving the pool at the hotel

  

We arrived in West Palm Beach on Monday July 23rd.  I was determined to make sure that Madi and Julia got to have some fun before surgery day on Wednesday.  They spent lots of time at the pool at the hotel that night.  Our pre-op appt was scheduled for 7am on Tuesday morning which was early but worked out well because we were done by 10am.  The girls decided to spend the morning at the pool and then we went to the beach after lunch.  Madi actually really enjoyed the ocean this time.  Last time she went the waves scared her but this time, I couldn't keep her away.  Lots of seashells were collected and I am sure we brought a bunch of sand along with us in the car on the way home. 


Waiting for surgery

Decorating Mommy's "bunny suit"

Ready to go back

   The morning of surgery we arrived at 8 am ready to go.  I was a bundle of nerves as usual and I could see that Madi was as well.  It was as if she recognized some of it but couldn't quite put it all together.  The longer we waited and watched some movies the more relaxed she became and the more anxious I became.  I finally got dressed in my "bunny" suit and carried my Madi back to her surgery room.  I stayed with her until she was asleep, gave her a kiss and left her in Dr. Paley's hands sobbing as I left the room.  I keep thinking this will get easier but it never does.  My mom and me settled into the waiting room anxiously awaiting any updates.  After a couple of hours an associate of Dr. Paley came out to let me know that Madi was doing great but Dr. Paley had noticed that her knee was bowing in a little so he wanted to put in an eight plate to compress the growth plate on the inside of the knee so that as she grows over the next year it will correct itself.  He said it was a small incision nothing different with her recovery.  I was so grateful that Dr. Paley checked on every aspect of her leg and noticed this so it could be corrected now.  We continued to wait and finally got to see my Madi in recovery that early evening.  The nurse said she was the sweetest child she had seen wake up from anesthesia.  She said she just woke up with a smile and asked for her mommy.  That's my girl!!  She just smiled at me when I saw her and said I love you!  We eventually got up to her room and the evening was pretty calm.  Madi was pretty groggy most of the night and for the most part slept and watched movies.  I was able to get a little sleep but its hard when the nurses come into check on her every few hours.  Madi ended up spending two nights in the hospital and was ready to go back to the hotel. 

Feeling pretty good in the hospital

Not so happy to get into the wheelchair



Ready to get out of the hospital!

        She never really complained about pain but more about itching around the incision sites.  In fact one morning while we were at breakfast at the hotel she decided to scratch her itches while I was getting her food and I came back to find her incision bleeding.  Just about gave me a heart attack!  Once I got her out of the brace and cleaned up I saw it wasn't too bad and put some band aids on so she couldn't itch anymore.  We were able to go see the rescued turtles and go to pet sting rays and starfish.  Madi enjoyed that very much and Julia especially enjoyed it since she had never been before.  All in all Madi did very well, she really didn't have much pain but the diva personality came out  a little.  She had a short fuse and would become frustrated about her movement limitations.  Needless to say I was physically and emotionally drained. 

Two peas in a pod

Got the ok to go home!

    A week after surgery we took Madi in to have her incision looked at.  They said that her incision looked really good but she had a rash around both of them.  It looked like she was having an allergic reaction to the surgical glue that they used.  That would explain the itching! They had to peel the glue off of the incision so her body would stop reacting to it.  She was not happy.  In fact, I don't think I have heard her scream so loud.  It was hard but I knew it would help her.  We got the ok to go home and was told we could give her benadryl for the itching. 
      Thursday August 2nd Madi and I woke up bright and early to fly home.   I knew flying home was going to be a little tricky.  I had Madi in her brace, a backpack, my purse, a pillow and the stroller.  I asked to board early on the first plane which they let me do but just had the flight attendants watch me as I struggled to get Madi, myself and our stuff to our seat.  Thanks for the help!  We got situated and she slept for most of the flight.  When we landed in Dallas I waited for everyone to get off of the plane and then proceeded to try to load up the bags, pillow and Madi.  As I was struggling to do this a flight attendant walked up to me and said "excuse me, can I just get past you".  Are you kidding me???  No offer of assistance, no nothing. Thanks again!  By this time I was spent.  When time came to board our next flight, I was dreading it.  I again asked to board early.  This time, thank goodness, the flight attendant offered to help me and carried Madi's pillow and bag.  She also told me to wait until everyone else got off when we landed and she would help me get off the plane, which she did.  Thanks to that attendant! 
    So here we are at home.  It feels so much better to be here.  We decided to rent a wheelchair for Madi because she was getting a little big for the stroller.  She loves it.  Over all she is doing so well.  She really has no pain, just itching from time to time but the rash looks so much better.  I am slowly getting back to normal.  I am exhausted but catching up on my sleep each day.  My back is another story.  Madi is so much bigger now than her first surgery and its so hard to pick her up all the time.  Oh well, maybe a massage will be in order! 

   I am so thankful to my parents who drove all the way to Florida and back so I could have some help and we wouldn't have to rent a car.  I don't know what I would do without them.  We also want to thank all of our friends and family for all of your support and prayers. It truly means so much to us to have you all there for us.  We still have a long road ahead.  We are just praying now that Madi's hip will heal the way it needs to for us to continue on and get to the lengthening phase.  More updates to come.  God bless!
  

Ready for the Next Adventure?!?!

So here I am starting to get anxious about this next surgery.  Its the same thing each time, you would think that I would get used to it by now.  It just doesn't get any easier.  Julia left this morning with my parents to start the road trip to West Palm and I am missing her already.  I fly out with Madi on Monday.  I am just trying to focus on letting Madi play and have fun running around since she will be off of  her feet for 6 weeks after this surgery.  I really hope it goes fast!  As you can imagine, its not easy keeping a 3 year old immobile for 6 minutes let alone 6 weeks.  I keep praying that this surgery will work and we will get her hip to heal the way that Dr. Paley wants it to. 
    Although I am anxious about the surgery, I am excited that we may be able to meet some new friends while we are down there. There are several kids down there that are in the lengthening process.  Its always so nice for Madi to meet other kids just like her and of course it is nice to meet other parents that know just how I am feeling. 
    That's all I have for now.  Stay tuned...  I will update as we get closer to the surgery which is scheduled for Wed. July 25th.   Thank you for all of the prayers!

Preparing for Another Surgery

    Well, its been a while since I last posted and we were anxiously praying for bone growth and healing for our Madi.  After many months and several x-rays we learned that Madi's hip is not healing the way that Dr. Paley wanted it to.  There is a lack of bone growth and some shifting in her hip area.  He told us that he needs to do a Valgus Osteotomy to straighten it out and add even more bone growth material.  To say I was devastated is an understatement.  I was so hopeful that we would get some good news.  I began to question whether I was doing the right things when it came to Madi's care, that maybe lengthening wasn't the direction we were supposed to go in.  I had many questions for Dr. Paley.  I asked what would our next step be if this didn't work, what the recovery was like and if she needed this surgery regardless of whether or not we continue on with lengthening.  The answers he gave me reassured me so much.  He said that while this occurs in only about 5% or less of his patients, he has always gotten the bone to grow and the hip to heal.  There was no hesitation at all in his answer.  He said that he would get it to heal and told me not to be discouraged, that we haven't lost any ground here.  To hear his confidence reassured me that I am doing the right things for her.  He did say that he would like to do the surgery in the next 3 months so I have scheduled it for July 25th.  We will have to be in Florida for about 10 days.  Her recovery will be a bit more difficult than the last surgery.  She will have to be on crutches or a walker for six weeks, only being able to toe touch with her shorter leg, which should be fun with a 3year old with tons of energy.  She will also be doing physical therapy during those 6 weeks and will have to wear a soft brace. 
  Here are a few updated pictures...

                                                        Love my Sister!

                                              Me and my best friend Gauge!

                                                     Happy Halloween!

                                                       Merry Christmas!

                                                     Yay for spring!

We have been through so much with Madi and we still have a long way to go.  She has such an amazing spirit and I know that she will get through this next surgery with flying colors.   We are so thankful that we have such amazing family and friends who continue to support us through all of this.  We appreciate all of your prayers and ask for your continued prayers as we embark on this next surgery.  To all of our fellow PFFD families, please know that we continue to pray for all of you.  We have gotten so much support and strength from all of you and we couldn't be more grateful for that.  I will keep you all updated as we get closer to surgery. 

Praying for Bone Growth

Well, we made it through another surgery!  On August 30th, we had our pre-op visit at Dr. Paleys office.  Madi ran right to Servando ( one of Dr. Paleys amazing PA's) and gave him a big hug.  It was so nice to see her not scared of the office and the doctors.  We had new xrays done and Servando explained to us that one of three things would happen in surgery.  One, that they would remove all the hardware and inject the bone growth material in the hip area.  Two, that they would remove the hardware, and put it back in a better position and inject bone growth material.  Three, that they would remove the hardware, cut off the bottom portion that attached to her femur and put back in the upper part that would be in her hip and inject bone growth material.  All of these options required a much shorter surgery and incision.  I was feeling pretty good, although I have learned to always expect the unexpected.  The next morning on August 31st we loaded up bright and early to arrive at the hospital at 6:00am.  They got us all situated in pre-surgery and Madi settled in with the dvd player and her doll.  She was in such bright spirits that is made it a little easier on me.  When it was finally time to go back they gave her the "goofy juice" and I dressed up in my white suite and hat to walk her back to the surgery room.  She insisted that I carry her which was of course, just fine with me.  I laid her down on the surgery table and they started giving her the gas to put her to sleep.  She drifted right off, not a fuss.  Everyone kept telling me that she would be just fine, that they would take care of her and I thought I was going to lose it.  Which is so silly because this is not the first time I have done this.  As soon as I left the surgery room, I started to cry.  I hated having to put her through another surgery so soon. 
  We (my dad and I )  proceeded to the waiting room to begin our wait.  I know they said it would be a shorter surgery, but since her first surgery was so long I anticipated a moderate wait.  I got an update about 45 min into the surgery that all was going well and then was astonished when Dr. Paley came out after only an hour and a half and said he was all done and that things went great.  He said that there was more bone growth in her hip than what he could see on the xrays, which was great.  He also told me that he opted to remove the hardware and just replace the top portion in her hip, which could remain throughout her lengthenings to protect her hip.  I was relieved.  It wasn't too long until we were able to go back to see her in post op.  She was woozy, but gave me a smile right away and kept drinking from her little bottle they gave her (since they don't have sippy cups).  They took her up to her room pretty quick and we settled in for the night.  She had one drainage tube inserted which she hated.  As long as she couldn't see it she was fine, so I had to keep it covered with a blanket.  She did great.  The next morning they pulled the tube and said she could be discharged.  She could start weight-bearing on her leg whenever she was ready.  It only took her a few days before she started attempting to walk again.  By the time we came in for her post op visit she was doing really well.  Servando removed the bandage and said we were good to go.  Her incision looked really good and was along the same line as the first one.  We flew home a week after surgery and she has been doing great since.  Right now we wait and see how her bone grows.  She has to have a stable hip for us to continue with lengthening.  So please send prayers that her bones grow well.  We won't do lengthenings until she is at least 4 years old so hopefully no more surgeries for the next year.
  Madi turned three on September 18th.  She has been through so much for such a little girl, but she is so strong and so determined that I know she will make it through all of this with flying colors.  I am so proud of her. 
  Here are some pictures from our trip and from home.  Thank you for all of your support and prayers! 

Waiting for Surgery

 

        Ready to go back

 In post-op just after surgery

In such good spirits in her hospital room

 So happy to leave the hospital and get back to the hotel

 At the hotel, first attempting to put weight on her leg

 At our post-op appt with Servando

Happy to be home with my dog Gauge

Love my sister, Julia

Enjoying one of the last warm days of fall

Yay!  The first snow of the season.