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. 

Busy Summer

Well so much for blogging on a more regular basis.  I have no excuses but just being too tired at the end of my days to sit on the computer.  I apologize.  Lets see, where did I leave off.  Madi has been doing amazingly well since her surgery in October.  She is back to being my little dare-devil!  Climbing furniture, jumping off couches and giving me little heart attacks all day long!  We went back to see Dr. Paley in May for a follow up appointment to see how she was healing and we left with more than we anticipated.  We got new x-rays while we were there and then waited for our turn.  Knowing how long it can take to see the doctor we came prepared with lots of snacks and toys.  Madi was in heaven with  lots of little kids to play with that were just like her!  We eventually were taken back to a room and when Dr. Paley first came in and wanted Madi up on the table she freaked out.  This girl has not forgotten what has happened in this office.  Dr. Paley asked me to just have her walk up and down the hall so he could watch her gait and then I got up on the table and held Madi in my lap and she was perfectly fine.  Even laughed when Dr. Paley tickled her.  He looked at her xrays and told us that the bone around her hip was growing in but not as much as he would have liked.  He then told us that he wanted to go in and put more of the bone growth material in the area to stimulate the bone to grow more.  He said some kids just need a little more and its not a big deal.  Its just an outpatient procedure.  Whew!  Not so fast though!  He continued to study the xrays and explained to us that he was not happy with the placement of the plate in her hip and that he would like to go in and remove and replace it.  This would be a 1-2 hour surgery with 1-2 nights in the hospital but no cast.  He then told us it needed to be done in the next 3 months.  Ok, while I was happy that things over all were not bad, I was not excited to have to plan another trip, let alone another surgery in three months.  As you all know we live quite a ways from Florida and each trip no matter how small is a huge expense.  Oh well, whatever Madi needs we will somehow make happen.  So we scheduled the surgery for the end of August and went on with the summer.  It has been quite busy getting Julia ready for kindergarten and getting ready for this next trip.  Since Julia is starting school and Mikey is in school and working. We decided that I would go to Florida with Madi and my father would come with us.  My mom would stay home to help with Julia.  We should be there a little over a week and I pray it will be simple and there will be no surprises.  I ask you all to pray for my little girl, that she will be strong and get through this next surgery with flying colors!  Her surgery is scheduled for Wednesday August 31st.  I will keep you all updated as we get closer!   Here are some pictures since a finally got them off of my phone.  Some are from her previous surgery and some from the summer. 

Amazed!

So first of all let me apologize for the long absence of my postings.  All I can say is that things have been busy, busy in our household.  I think when I left off we were still in Florida, anxious to go home.  Madi stayed in her cast for 6 weeks and I have to say it really went by faster than I thought.  Although she did become a little bit of a diva while she had it on.  It was sort of like Madi said "jump" and mommy and daddy said "how high".  She became attached to her  Tinkerbell foam couch and sat in it all the time watching movies, sponge bob and yo gabba gabba.  She eventually like some time on her tummy, playing with toys and towards the end of the six weeks was rolling around and scooting on the floor. Nothing was going to stop this girl.  I remember there was one night I was at work and I called home to check in and Mikey said that Madi was watching tv down in the family room and he was out in the living room.  Sometime in our not very long conversation he said "Madi, how did you..."  Turns out my little daredevil scooted her self across the family room, up the 3 stairs leading to the kitchen, through the kitchen and dining room and to my husband.  That definitely showed us the fighter she has in her.  She continued those kind of maneuvers throughout that last week.  Then we left for Florida in mid November to see Dr. Paley.  Since it was getting cold in Iowa, the warm Florida air was perfect.  We arrived the day before our appt and the morning of our appt at the hotel breakfast we met several other families that also had kids going to see Dr. Paley.  It is so amazing the things he does and the people he helps.  We are so blessed.  We say Dr. Paley that afternoon and he said she was healing well and  the cast could come off.  He also had to pull the pins out of her knee.  Well, let me just say, I was not at all prepared for that.  I thought surely they would give her some good drugs or something but he just told us to hold her dress up so she couldn't see what he was going to do and before I could even blink he took the pliers and just pulled them out 1,2!!   WOW!  I'm sure it wasn't too comfortable for Madi but she stopped crying pretty quickly.  Dr. Paley told us she could start physical therapy as soon as we got back 3-5 days a week, and we didn't need to come back to see him for 6 months.  Awesome, so feeling horrible about the whole pin-pulling experience we decided to take Madi out for some sweets and toys!

     It was so nice to see her out of that cast and she seemed so happy about it!!!  Within a week in a half, Madi was standing up and trying to put some weight on her leg.  Of course she was very nervous.  We started physical therapy with two of the best therapist and she amazed us every session.  By six weeks of physical therapy she was running around, climbing stairs, climbing ladders, going down slides, astounding all of us by her quick recovering and doing so well that when the therapist checked in with Dr. Paley he said she had surpassed all of the milestones she needed to meet.  So no more therapy for us.  Whew, it was getting to be a hectic schedule with preschool for Julia  and Physical therapy. 
    We are now just trying to get back to a regular routine and continue to be amazed by how well she is doing.  She is walking so much better than she was pre-surgery!  I can't say enough thank you's for all the support we received and continue to receive from all of our family, friends and fellow pffd parents-who feel like family to me!  All of your prayers brought Madi through this surgery and her recovery.  God was truly with her.   I could not have survived without all of your support.  Madi is such an amazing girl and I am so blessed to be her mom!
     I now am praying for our pffd friends who have had and are going to have the super hip surgery like Madi.  I only hope that I can give them as much support as they have given me. 

    I will do my best to post more often and I have lots of pictures to post from surgery time until now.  As soon as I can figure out how to get then from my phone to the computer I will post them.  Best wishes!