Sick of Surprises

So we brought Madi home on Saturday  in the afternoon.  She was glad to be leaving the hospital.  She is so leery of medical professionals now that anytime anyone came in the room she would scream bloody murder.  Upon leaving the hospital we decided to go get her prescriptions filled, one pain med, one for Valium and and antibiotic.  So we go to the closest Walgreen's to our condo.  Well they don't carry the pain med or the Valium.  Nice!  So we go on to a CVS pharmacy and they don't carry them either. While in the parking lot we call Target, Walmart, other Walgreen's etc... No one carries them!  Call the hospital and they say they don't have an outpatient pharmacy.  So long story short, finally found a Walgreen's that carried the pain med and said that they would call around and see if any other Walgreen's had the Valium.  Meanwhile Madi is asleep in the car thank goodness!  Finally get the prescriptions just in time to get home and get her the pain meds. 
  So later that evening around 8pm, Julia starts throwing up.  She throws up all night long and all day long the next day.  She can't keep anything down and is starting to look seriously dehydrated.   So Sunday night my dad and I take Julia to the Emergency room while my mom stays with Madi.  The doctor at the er decides to give her a shot of zofran and has her drink a little Gatorade and sends us home.  As soon as we get home, she throws up again!!  UUGGHH!!  So we load her back up and take her  back to the er.  This time they decide to give her some iv fluids, which is what they probably should have done the first time!  It took them 3 times to get the iv since she was so dehydrated.  She was such a trooper.  Mean while Madi is at the condo with my mom.  She has been throwing huge fits of frustration and throws big fits when we try to give her the pain meds.  Needless to say, my mom had a rough time.  About 5am Monday morning we are taking Julia home, re hydrated and tired.  Just in time to get a couple of hours of sleep and get up for Madi's appt with Dr. Paleys PA, Servando. 
  We get to Madi's appt and she starts throwing a fit as soon as we get to the room.  Can't even tell you how bad the fit got when they had to saw the cast to remove it.  I can only imagine how scary that must be for a two year old.  Scares me a little.  We get her out of her cast and Servando looks at her incision which he said is healing so well!!  That is awesome.  Showed us the pins in her knee, a little scary, but I just better get used to that.  She fussed the whole time we were there.  While he was examining her we noticed a small bulge on her lower abdomen.  Since we had never seen it before he wanted us to see a pediatrician to make sure it wasn't a hernia.  Seriously!!!  This is just what a needed!!!  I have one kid in a spica cast recovering from surgery, the other is having to go to the er from dehydration from vomiting so much and now there is the possibility of another surgery for a hernia!!!  I am done!!  Burst into tears at the mention of seeing a general surgeon.  Servando assures me that he really doesn't think that's the case but just wants to be cautious and see what the other doctor says.  Ok.  Pediatrician examines her and say that it does not feel like a hernia and is most likely due to all the swelling in the area from surgery.  Could just be a little fluid or swelling but nothing to worry about.  WHEW!!  Finally back to the condo and I am exhausted!!  I am so ready to go home!!!

Recovering

So we were finally able to see Madi at 12:30 am.  Almost 12 hours later.  It was such a long wait but she looked pretty good when we saw her.  She even cracked a little smile.  Dr. Paley said that he fixed her femur and her hip.  He also created 3 new ligaments in her knee that she did not have and removed some tissue behind her knee so she could have full extension of the knee.  They put her in a spica cast and put some pins in her knee to keep her knee straight so it would heal right.  He told us we would have to come back in 6 weeks to have the pins removed. 
   Madi rested pretty comfortably last night and really has not had any pain at all, thanks to the epidural which she will have until Friday.  Because the surgery was so long they decided to keep her in the pediatric intensive care unit.  She was able to get into a wheel chair for about an hour but was really not happy about it.  I think she was scared that they were going to do something else to her.  Mikey spent the day today with Julia who is handling it pretty well.  She has seen pictures of Madi but cannot see her until she gets into a regular room.  Hopefully tomorrow.  She is anxious to get to see her.  Mikey is set to go back home first thing tomorrow morning.  I don't think he really wants to go.  I know it will be hard on him not being here.  All of the PA's, nurses and anesthesiologist are so nice and a helpful.  I was able to get a chance to come back to the condo while Mikey is with Madi so I can take a shower and eat some dinner and see Julia.  I will go back to spend the night with Madi.  Hopefully she will have a good night.  Not so easy to see her like this, but I know it is all the best for her in the long run and she is handling it so well.  She is an angel!  There is no wi-fi in her room now so I am only able to make updates when I get to the condo.  I will do my best.  Thanks to all of our family and friends who have been sending their prayers.  They are working!  Keep them coming as she has a long road ahead of her!

The Surgery Begins

So we arrived at the hospital at 8:00 am for Madi's superhip surgery that was scheduled to begin at 10:00am.  They didn't actually take her back to surgery until 1:30pm.  It was a long wait but the PA's told us that Madi's surgery was the longest one that day and they wanted to get all of the smaller ones done first so they could all focus on her for the rest of the day.  Luckily she did pretty well waiting for so long with no food or drink.  They gave her "goofy juice"(aka versed) around 9:15(when they thought surgery would be around 10).  The goofy juice made her so funny, like a drunk little baby.  Well the "juice" wore off long before surgery time, but she was pretty good.  They let me dress up and take her back to the surgery room to stay with her until they put her to sleep.  She fussed some and kept pulling the bonnet(surgical hat) she was wearing over the eyes like she was trying to hide.  Only took 30 seconds or so for her to be off in dreamland.  This time was not quite as hard as the MRI since I kind of knew what to expect.  Mikey and I went to the cafeteria as soon as I came back out, since we also had not eaten that morning.  That is pretty much all I have so far.  Hopefully they will come out with an update soon.  The hospital staff has been great, very nice and accommodating.  All of the doctors and nurses are great with Madi and seem to just love her (of course)!  Will post more updates as I get them.  Was told that the surgery could be a least 5 hours if not longer so we have a long day ahead of us.  Keep the prayers coming!!

Welcome to West Palm Beach

Well we arrived in West Palm yesterday with not a lot of trouble.  Actually both of the girls were really good travelers and didn't give me any problems.  Luckily the tropical storm didn't do so much in West Palm so we had no delays on the way down.  Madi had her MRI this morning.  We were told to arrive at 6:00am.  Well a trauma arrived while we were there so we got pushed back and the MRI that was supposed to be done at 7:00 wasn't done until 10:30am.  Poor little girl.  Not so easy for a 2 year old to do especially when they haven't been allowed to eat or drink anything since the night before.  Luckily they had cartoons so she pulled through.  I can't believe how strong this little girl is.  When the nurse put in her IV, she just watched and didn't flinch or cry.  So calm through the whole thing.  I took her back the the MRI room to be with her while they put her under anesthesia.  She fussed a little while they hooked her up the the heart monitors.  I can only imagine how scary that is to a 2 year old.  I was able to stay until she was totally out.  So hard to see your little girl like that.  Almost 2 hours later I was able to go back to see her.  She was so dopey but she smile right away when she saw me.  So hard to hold back tears when I saw that face.  The nurses said she was so awesome.  That they had never seen a 2 year old so calm.  That's my girl!!  After she took down some liquids we were able to take her back to the condo and in about 1 hour she was back to her old self.  Running around, getting into everything.  It was a long day but we get a few days to relax before pre-op appts on Monday.  Hopefully we will get some sun and fun.  I will keep you all posted and thank you all so much for your prayers.  Keep them coming, we will need them!

Anxiety is Increasing

Things have been pretty crazy getting ready for the trip.  I feel like I am carrying a elephant on my back with the amount of stress I have.  I am so anxious to just get the surgery over with.  I see that the anxiety is also affecting my hubby, Mikey.  I know he wants to be there for the whole thing, but with school and work it is just  impossible.  We have never really spent any time apart since we married so this will be hard. 
  Anyway, we loaded up my parents car Saturday night and they arrived in Tennessee tonight.  Please send prayers for their safe trip.  I fly down with the girls Wednesday morning.  I hope the flight goes well.  I have no idea what to expect flying alone with two kiddos.  I have lots of stuff for them to do, dvd player, video games, dolls  etc...   Snacks will be a must.  We have a fairly short layover in Dallas so will be asking for one of those golf cart things to take us to the next gate. 
   My brain is on over load, so forgive me if this is not so great of an update post.  I promise to update regularly once we get going on this trip.  I want to thank all of our friends and family who have helped us in getting this trip set and who have given us so much support.  We love you all so much. 

Times a tickin'

Well surgery date keeps getting closer. It seems the closer it gets the more anxious I become. 6 weeks (eeeek!) I got plane tickets bought and the condo lease ready to be sent. Things are moving right a long. Somewhere in the back of my head I just want to say nevermind, can't put my little angel through this! I just keep reminding myself that this is going to help her so much and it really is the best thing for her. I have been trying to get everything ready for our trip. Cleaning stores out of 2t summer dresses! If my little Madi has to be stuck in a cast for 6 weeks, she might as well be styling while she does it, right? I have also been trying to come up with everything I can to entertain to kids on the plane ride down. We got Julia the fisher price ixl, which is like a little ipad for kids. So cool. Of course the blessed portable dvd player will be coming with us too( thanks Susie!!) Since I am flying down alone with the kids my only worry is keeping Julia with me in the airport. Now as much as I have criticized those folks that put those leash like apparatuses on their children, I am now thinking that might not be such a bad idea for the airport. I can't believe I am saying that! Oh well, you do what you have to do.
On a more exciting note, Julia and Madi had their double birthday party last week. Julia turned 4 years old. My how the time does fly and Madi turns 2 in Sept. I decided that since Madi's birthday was so close to surgery time that I didn't really want her around a lot of people and risk her getting sick so Julia so sweetly shared her party with Madi. We have so been so blessed to have such amazing support and help from our family and friends. I really need to send a huge thank you out to all of you!!! We love you so much and we don't know how we would do this without you! I will continue to keep you all posted on our journey!

Updates

Wow! So I haven't been to good at posting on this blog. Here's hoping I can do a better job. Well since the last time I posted Madi has continued to improve her walking and even has her own way of running. She got some new New Balance shoes that are so cute. She has already worn them out and is close to needing a new pair. They grow so fast. She seems to have some times where she is sore or stiff in her short leg. Especially when she goes from sitting for a while to standing. I hope this gets better after her hip is fixed. Speaking of Madi's hip, we are working like crazy to get ready for her Super Hip surgery in Oct. I think I finally found a condo to rent and last are plane tickets. I am getting really nervous and anxious about this surgery. It is just such a huge thing for such a little girl. I know everything will be ok but I hate to see her have to go through something like this. I feel so blessed to have my parents coming with me. I know I will need their support. Hopefully Mikey can come down for the surgery at least. With school full time and work it will be hard for him. I am so lucky I have met some great people who have gone through this and have given me a lot of advice so I feel pretty prepared. Here are a few pictures to update you all. I will do my best to post more often.

From Then to Now

So with relief that there was a doctor out there that could help Madi we were able to just enjoy watching her grow. She never has failed to amaze me. She eventually figured out her own little way of crawling. With her knee one side and her foot on her shorter side. She very quickly figured out that she had an advantage with her shorter leg. She could get her shorter leg up to things and hoist herself up, and so she quickly learned how to go up the stairs. As our trip to Florida came closer, I became a little more nervous. Would if we got there and he changed his mind? Would if her condition was even more severe than he thought? I wrote down every question I could think of and we embarked on our trip to West Palm Beach. We had xrays done and when we finally got to see Dr. Paley, he outlined his plan for Madi. He said that her right femur was about 8cm shorter than her left femur and that her right hip was very deformed but was present which was good. He said that when she was full grown her discrepancy was predicted to be 21 cm. We had a lot of work to do! He told us she would need a Super Hip Surgery at the age of two. This would correct the deformity of the hip and stabilize it to prepare her for the lengthening process. She would then need 2-3 lengthenings. Two lengthenings if she was predicted to be tall and three if she was not. If we thought she would be tall then they could eventually stop the growth in her good leg to even her out, which is much easier then a lengthening. This could only be done if she could stand to lose some total height though. Only 8cm can be done during each lengthening process and they would be done when she was 4,8 and 12 years old. Ok, so we had a plan. The hip surgery would only require us to be in Florida for 2 weeks. Harder to hear was that the lengthening would require us to be in Florida for 4 months. I still haven't figured out how I am going to do that. One thing at a time I guess. Dr. Paley prescribed Madi with a 7cm lift and an AFO brace to stabilize her ankle.

So when we got home we immediately got her brace fitted and got some shoes made for her. It may have been a little premature as she hated wearing them. She was much happier crawling. Crawling was faster and more efficient for her. Just as I was starting to worry that she just wasn't getting this walking thing, she took off. Which takes us to the present. Madi just started walking a few weeks ago and now walks circles around our house. I have said it before but I have to say it again. This little girl just amazes me everyday. There is nothing that holds her back. I am so proud of her!

The Journey Begins

The journey begins. I created this blog as a way for family and friends to keep updated on my daughter Madi's journey with PFFD. I also hope that it may give some of those other parents or families out there that are going through their own journeys a place to hear someone else's story and receive some support.

Here is where this it all started. When was 21 weeks pregnant with Madi, we went in for an ultrasound in my OB's office. We were so excited because we could finally find out the sex of the baby and I am one of those that needs to know so I can plan. When the tech got the word from us that we did want to know the sex, she checked it out pretty quickly. It was a girl. I was so excited. I had my older daughter Julia, who was about 20 months old at the time there and I was thrilled that she would have a little sister to share a special bond with. The technician went about the usual things during the rest of the ultrasound and looking back on it I do remember her spending a lot of time measuring and remeasuring Madi's legs. I guess I just chalked it up to inexperience. She finished the ultrasound and then said to us that she was going to get the doctor because she wasn't sure she was seeing what she should be with Madi's leg. Still, I was thinking this tech is just new and must not know what she is doing. After all, Julia was the healthiest, most by the book pregnancy and baby ever. When the doctor came in, our world changed forever. She told us that Madi's femur bone was significantly shorter in her right leg than the femur in her left. She said she had not seen this before but said it may have been caused by amniotic bands. We were then scheduled for another ultrasound at a specialty clinic. This is where we first heard the term PFFD or Proximal Focal Femoral Deficiency. The neonatalogist diagnosed the condition and said that he maybe had heard about it in med school once. We were told she was totally healthy, she just had a short femur bone. We were then given some 10 year old printouts about that condition that mostly talked about amputation as the treatment. To say I was crushed, is an understatement. I always took such impeccable care of myself when I was pregnant, how could this happen? I immediately started questioning what I did wrong to make this happen. Was it that sip of wine I had before I knew I was pregnant, were my baths to hot, was it the lunch meat, did I not take enough DHA or folic acid, what?? With no answer to these questions and no doctors that seemed to know anything about this condition, I hit the Internet. It took some time to find information. I eventually found a PFFD group on facebook and met some of the most amazing parents who shared their experience and made me feel so at ease. For the first time I felt that everything would be ok. I am so grateful to all of those parents who reached out to me.

Fast forward to Madi's arrival into the world. One of the happiest days of my life. For a while I forgot all about her condition. She was just so beautiful swaddled in her blanket. I do remember asking my husband at some point if her leg really was short. You know, like maybe the ultrasounds were all wrong. He said it was shorter and when I had a moment with Madi by myself I mustered to courage to look. Her legs were the most beautiful little legs I had ever seen. She was perfect!

We had a orthopedic surgeon evaluate her and have xrays taken. He told us what we already knew and that at this point there was nothing that needed to be done. As she grew and got closer to 6 months we would be able to see more. When she was 3 months old we took her to another ortho surgeon who said that her right femur was about half the length of her left femur and that her hip was not there on her right side. He said there was nothing he could do and he recommended doing nothing and she could use a prosthesis. While I was ok with that, I knew I needed to know if lengthening was an option. The people on the PFFD groups kept talking about this Dr. Paley in Baltimore that was amazing. So I decided to just send him an email. I sent Madi's xrays and a note asking if he could help. My heart skipped a beat when my phone rang early the next morning with Baltimore caller id. I will never forget that morning. He said I can help her, I can fix it. He then said he wanted to see her when she was closer to a year and after he got settled in his new location in Florida.

I finally felt like I found a doctor that knew what this condition was all about. That was a blessing.