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.