Pin It MAY 5, 2011
We met Dr. Paley and he is just as genius as we thought, and was really great with Rory too. Without getting into too much detail here are her next steps:
1. Since Rory is already starting to walk we got a prescription for a shoe lift for 3.5 cm. I was not sure what this will look like, but when we got back into town we met with her orthopaedist to see where we get this prescription filled, because it is not something you can get from Walgreen's! Apparently, insurance does not cover shoe lifts, they believe it is a "Fashion" thing and is not needed. So we went to another doctor to get it filled.
2. Dr. Paley said that her hip looks good- the possibility of her needing the hip surgery when she is 2 is a 50/50 chance, and will depend on how it develops- we are going back down to see him in November and hopefully by then we can know more.
3. She will need surgery on her knee when shes 2- during this time he will also remove her tendon in her femur and use the tendon to create new ligaments to get the joints ready for her lengthening surgery. The knee surgery should be a quick recovery, but we will have to see how the leg develops, again more will be known when we can see how the leg develops.
4. Her lengthening will take place when she's 3 and will be a long surgery and recovery- he said we should be down there at least 3-4 months. After this surgery she will need the external fixture ( the screws pins and metal cast) and in those 3-4 months he will help us with therapy and show us how to care for it etc...at that time he will lengthen her around 5-6 centimeters (again depending on how it grows) and she should be good until the age of 9...
5. At 9 she will need her third and hopefully final surgery-We have 2 options with this surgery- we can either do a procedure that will stop the growth of her left leg or do another lengthening (and 3 month stay recovery) procedure. We would like to do the lengthening surgery because the procedure that will stop the growth in the left leg may leave her shorter than she should be. the great thing about this is that they currently have developed an internal fixture that she will be able to wear rather than the screws and pins.
6. Because she was 6 months there was only so much they could see, and we will have to wait till we see how the bone grows. We may need another surgery when Rory is 14 or 15 depending on how the other surgeries go. It all depends on how it grows!
I think that's everything- Rory did poop on Dr Paley! Dr. Paley exceeded our expectations! He wasn't arrogant or rude and explained everything so we could understand. He spent a long time with us- we were there at 8 am didn't leave till noon. His staff was just was wonderful and it helped to reassure us that we were in the right hands.
OCTOBER 28, 2011
Our day began dark and early at 3:15am. I woke up and felt like complete poop- i thought i was going to vomit. I wasn't sure if j was really sick or just nervous. I figured theres no turning back so I got up and started the day.
Jon and I got things ready to go- last minute stuff like taking the trash out and unplugging everything. We planned on leaving the house by 4:15-4:20 at te latest- our flight was at 6 but we were dropping the dogs off at a friends house first and he was going to drive us to the airport. We got the car ready complete with luggage and dogs, got rory up about 4:15 and were out the door.
Rory was up and didnt feel like goi g back to sleep- why would she, there was a dog in the car woth us! She kept playing peek a boo with her blanket- it was quite exciting for her and I let her stay up hoping she would snooze onthe plane. We are almost to the highway when she begins signing milk.
Milk- yes that white stuff in the fridge!
We turn around and grab the milk- drop off dogs and get to the airport. She's still awake too. We got her out of Jammie's and get her dressed ready for the flight.
Then I hear my name and I look over And see my friend Laura! Who would have thought I'd see a friend on a Thursday on the same flight....
It was so nice to see her and also a huge distraction for me and for rory!. We talked the whole flight and our gates for the next flight were right next to eachother so we sipped Starbucks and just had a nice conversation!
It was time to board the second flight and we moved over for family boarding when special surprise #2 happened: we saw another girl who had an external fixator on her leg, which is what Rory is going to get!
It's funny when i saw them because I didn't want to go say something but we saw her mouth "shoe lift" to her parents so we knew something was up. The girl was adorable too- a beautiful teenage who kind of reminded me of my younger sister. Not going to lie- seeing her put tears in my eyes- its strange how your kind of feel "connected" to s person without even knowing them. I thought of rory with a fixator and got even more teary.
When vshe passed us up for special boarding her dad asked us if we were going to see a doctor in west palm and I replied that we were one of Paleys kids. It was really nice. The whole flight I thought about how to approachc the without being a creepy nosy lady. I didn't have a lot of time to think because rory only took a 20 min nap.
After the flight we talked- rory started waving and blowing kisses to the girl as if she knew something was special anout her. the girl has been seeing Dr.Palery since she was 3 and assured me that Rry would be ok.
It was so nice to talk to her- it looked like the girl was getting emotional talking to us so I didn't want to make her feel bad or embarrassed in the middle of the airpott, becaus she was starting to cry, so I asked if her family wanted to do coffee but they were leaving during rorys appointment. I do hope our paths cross again though.
We went to the two story target to buy food- rory still didn't nap so I thought we could keep her up a little longer so she could take a nice long 2 plus hour nap while we scrambled to buy applesauce packets and milk.
We got to the hotel and drug everything in and tried to get rory down- it wasn't going to happen, so I kicked daddy out to go for a run and I put my special girl to bed. Daddy came back a few minutes after she went down so there was time for me to go on a short run- i ran 30 min, came back and she was up....she got maybe a 40 min nap in!
That night dr.paley was having a Halloween party for some of the his kids. We dressed rory up in her sweet duck costume and went to party- rory was of course he cutest thing anyone had ever seen! She was getting her picture taken left and right and everyone wanted to talk to her! It was so good for us to see other Pffd/cfd kids to- its so reassuring to know that these kids are doing so well and that we are in good hands with dr.paley. The duck costume was a success but not only did she leave feathers everywhere but she also got so hot and we had to take her out of it and give her tons of water.
I talked to one mom whose little girl had a lengthening a few months ago. She told me all about the surgery roru will have next year and how that one is not that bad, but the lengthening surgery is very hard. She said the first week after was the worst/ her daughter was screaming in pain and her and her husband were wondering if they had even done the right thing. After the first week it apparently gets better. The lady was so nice and we plan on staying in contact. It is just so hard tithing about all this happening to rory.
While I was talking to the lady I heard Jon go "oh my gosh" and I looked over and saw my mom and dad. Apparently they were going to Marco island Florida and on heir vacation decided to drive across Florida to come see us for the night. Do I have the best parents or what..??!! He best thing: rory went to them, no hesitation! We partied for a bit longer then picked up some burgers and went back to he hotel. We ate and of course watched the cardinals in game 6 of the world series.
Rory was in such good form- she was sweet and loving and let mom and dad play with her for the night- it was good for her and SO good for me and Jon!
We were all getting tired so mom and dad went to their hotel room and I tried to put rory to bed since she was still up and wild at 8:30- before mom and dad left rory gave mom a kiss- it was so sweet having slept only an hour a day I thougt shed to down easy and sleep through the night.
Sometimes mommy is an optimist :)
She woke up every two hours- I felt like she was a new born again in the pack and play by my Bed waking up at all hours of the night. She even woke up normal time at 7!!!
We met mom and dad for breakfast which was wonderful. They had a little Halloween bag for her filled with treats that she loves. She was so good for them during breakfast- normal rory was on vacation and sweet rory was there and showing off for mom doing her signs and yoga and somersaults. Her appointment was at 10:15- during nap time so we were already down to one nap a day, and I prayed she napped more than an hour. Mom and dad took rory while we got everything ready for the appointment- It was amazing how fast we got ready without rory being crazy. I was going to go and check to see how they were doing but I figured hey were doing fine and if rory saw me she would just want me, so I stayed in the room and enjoyed my 5 minutes of non aurora silence.
I wish mom and dad would have gone to the appointment with is but they decided not to- it was their vazarion so they should be able to go to their beach for a few days ;). It was so nice having them there- they have no idea how wonderful it was to have them there and how much it put me at ease- I was so happy they were there I didn't even think about her appointment or anything- I was just so excited to see them. Jon said having rory play with mom was a mini vacation for him too!
After getting choked up when I said goodbye we headed off to dr paleys office. The nerves began. We began with x rays- they had Jon hold her down with the x ray tech and I had to stand in the other room- probaly a good idea- I don't work well with rory screaming. We then met with the nurse practitioner who looked a little bit at her X-rays to report to dr Paley. He took some measurements and at first told us her discrepency was going to be larger than we had thougt but then said he'd let dr Paley look at it.
Dr Paley looked at her x rays and decided she didn't need the ct scan!!! Apparently her little leg is trying to grow and her discrepency is getting smaller- the little leg is now only going to be 10 inches smaller rather than 12! She does need a new shoe lift for 5 cm rather than her current 3.5- so mommy gets to go shoe shopping! She may need an ankle brace since fhe shoelift will be so tall, but we are foing to wait amd see how she does. We will also have to call at 18 months to get another centimeter added to her lift. However dr Paley said we probably wouldn't need to come back at 18 months and can just send x rays.
We will have to come back September 2012 for surgery. He looked at her hip and it is sitting quite lower on the right side and at a sharp 90 degree angle. They are going to cut the bone in half and rotate the top of the hip bone so it is at the same angle as the other hip bone. This will also add 1 cm of length to her leg. While he is in there he is going to snip the muscles to make them more agile for the lengthening surgery. He is going to take the tensor fascia latte and going to split it creating new ligaments for her hip and for her knee. Currently her knee ist looking too bad so now they are unsure if she will need the super knee surgical procedure done. They will know more about that when we go into preop next year.
The surgery is a quick recovery so we will only be down there for 3 weeks. It will be nice not having to go back in 18 months- so we are hoping her X-rays look good then- the older she gets the more you can tell about the leg, so if he sees something out of the ordinary in the X-rays we send down at 18 mos then we could have to go down for an MRI.
We went back to the hotel and got crazy down for a nap around 1 and we took turns working out. She slept for 2 hours, thank God, so we hoped she wouldn't be too out of sorts at night.
We showered up and got the best Indian food ever to go at Indus restaurant, and went back to the hotel to feed rory. She had some cheese and youvrt and everythig else we bought her at target to finish. Things were good until I saw the look in her face- vomit. Rory has the nervous/ overwhelmed vomits! I ran over to her and puke flew out of her smelling the whole hotel and my clothes. Jon cleaned he floor- I cleaned my girl. Poor thing- it is so awful seeing her feel like this- it breaks my heart. After the puke she was fine- she sat with me and we drank some juice and she was up and wild as ever. Poor bug.
Rory loves watching videos of herself on my phone so we snuggled and watched he same 1 minute videos of her dancing, eating, signing, and doing yoga. She loved it.
We laid in bed with her trying to calm her down and sleep and she finally went to bed about 8. Jon and I could have gone down too but we wanted to watch a bit of the cardinals game. I looked at shoes for her and we laid in bed exhausted from lack of sleep, lack of vegetables and just complete exhaustion.
She did ok through out that night- only woke up about 4 times- but did wake at6:30. I woke up with a strange rash on my arm. I used the soap in the hotel and apparently the colored ink on my tattoo is still sensitive even though i have had it for 6 months or so, and it is now all bubbled up and itches like crazy. It really sucked!
We got hotel breakfast and went back to the room and all she wanted was for me to hold her- if I set her down she screamed. Daddy had to take her on a few walks because she was so crazy!
We get to the airport an believe it or not our flight is delayed- Murphy's law still follows me around where ever I go! We left at 12:05- we were going to Tampa and we were all tired. W got on the plane, I changed Rory's diaper and put it in the pocket in front of me on the plane, powered off my phone and put it with the diaper and then held Rory as she fell asleep the whole flight. W arrived in Tampa about 1:05 and our connecting flight was at 1:20, so I just rushed off the plane and went into our boarding line.
While I was standing the b group was lined up and the couple across from me said "look at that babies shoe, it's so big". And his wife replied, " what big shoe, oh that babies big shoe.". I turned around and gave them the meanest look I could and was so tempted to remove the "big shoe" and beat them both with it but i knew the flight was boarding so id have to put the violence off for another date and time.
I did however have tears in my eyes while I was finding our seats. I don't think I will ever get used to people saying things about my daughter. We finally took off and were in the air when Jon decides he wants to get his phone out- phone....shit
My phone was still in the Tampa plane!!!
Murphy's law strikes again! We made it home safe and sound....phone less and still with an itchy rash, but safe....I am currently phone less but will being using Rory's phone soon.
It's good to be home.