Friday, December 20, 2013

Ghosts of Christmas Past....

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Trying to forget the worst months of my life last year....


It's been so long since I have posted to this blog- and I apologize. Things have been well-extremely busy, but well. Rory has recovered from her surgery. She has physical therapy 4-5 times a week and last time her leg was measured she was at 5 degrees of knee flexion. I was very happy knowing all the hard work we had been putting in and the 2 metal plates in her leg were helping her leg straighten.   

* look on the surgery link on the side for more information about her surgeries last year or click here http://www.roryjane.com/search/label/surgery?m=0

Zin is a mobile wild baby now. She is crawling all over and getting into everything she can. She doesn't get much of a word in since Rory does all the talking. She is quite observant, she takes everything in and stares intently. I know that she has helped Rory out miraculously with all of her physical therapy and learning to walk again since her last surgery. 

With the holidays approaching us we have been even busier than normal. Normally, this would be my favorite time of year, however this year my feeling are mixed.  I'm brought back to every thing happened last year.  Everything from putting Rudolph stickers on our face to keep Rory from crying in the plane to the horrific over 12 hour superhip/ superknee surgery. And I can't forget the 3 more surgical procedures she had to have and the horrible spasms she would have post op due to Anesthesia. 

 Spending Christmas in a hotel with your Baby in a spica cast screaming in pain and with a would vac on, making a wrapping paper Christmas tree, and eating Mac and cheese for dinner was the absolute worst. 

We got out Christmas decorations and found ornaments the nurses gave to Rory.  It all made me very nauseous and want to just put all of the Christmas decorations back in the storage.  

I think the Christmas decorations and toys have reminded Rory about her surgery as well. She has been asking me about it more than normal and even remembering things that I never thought she would remember. I have had questions asked me that no mother should be asked like: mom why did they put the mask and the weird air over my face. Her nightmares have also gotten worse lately. I now have to be in there when she goes to sleep and I'm in her room at least once at night when she wakes up screaming about her leg.  She's talking non stop about her fixater that she will get and if she will have to be in the hospital for a long time. 

One might think that it's just memories and it was all year ago, but is not that cut and dry. The thought about going back into surgery this year for a fixater, where we have to be gone in Florida for 4 to 6 months make me want to ask Santa for 2014 not even happen and just go straight to 2015. I'm not going to hold my breath because Santa hasn't gotten me what I've wanted the past three years which is to have Rory's leg grow. 

So that's why I'm having mixed feelings about Christmas. Currently I am buying anything and everything for my children to compensate for the horrible Christmas we had last year and my Zinny's first Christmas. At the same time I am very apprehensive and not even want to celebrate so I'm very torn this year. I guess all I have to can do is just sit and wait and try not to dwell on the upcoming surgical procedures that we have this year and try not to think about before surgeries we had last year. 



Seeing my girls faces now I know that my need to compensate for last years Christmas will kick in more than my hatred for the Christmas.  Last year, I would have mugged someone for one Christmas cookie and now our house is filled with More Cookies in the bakery.  seeing my girls faces when they see the Christmas lights and the presents is making me think it will be a big Christmas for us this year!


Tuesday, October 15, 2013

Rorys 5th surgery

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We went down to Dr.Paley's in Florida for a check up last week. Before the appointment we talked to her doctors about what to expect, we learned our lesson the last surgeries!  We were expecting her to stay down there for intense physical therapy since her leg still doesn't straighten, but not too long just a week or two tops. There was a good chance she would not need any surgery unless there's a problem with her bones, so we knew we would have to do x-rays. We hoped and packed for the best- only for a few days. 

However..... We have the worlds worst luck!

We got down there and found out that there was an issue with the bone. 
She had her fifth surgery this week she had a Right anterior distal femoral hemiepiphysiodeisis. In other words they put a metal eight plate and screws right where her femur meets her knee to tether the growth so the bone will no longer grow crooked and will grow straight.  As the bone grows straight the knee will loosen up and she will get her knee range of most ion almost all the way back. She also had the metal plate in three screws removed from her femur, but the screw is still holding her hip bone in place.



 Her lengthening is now postponed until her fourth birthday in September. 
The surgery went well, no complications. She was and is still In a lot of pain, the first few days she was in so much pain she would vomit.  We called up the doctors to check and make sure everything was normal- they fit us in immediately and ensured us that she was normal. 

she did have some of her post op spasms on the airplane home- where her whole body shakes and her eyes roll back in her head, extremely horrifying but we learned it is not uncommon for kids coming out of anesthesia.  
 It was no fun for mama!

We are home now have re-learning to stand on two legs and again. She gets tired easy, but is doing well.  She has physical therapy 4 times a week because now we have to work on her flexion and extension. We will be taking a lot more X-rays to make sure the hardware is doing it's job. 

Zin has been a huge help during everything. Rory loves her sister and motivates Rory in her physical therapy. 

I'll keep everyone posted on how she's doing!  

Thursday, September 12, 2013

Happy birthday Rory!!!

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It all began with painting our nails!
Then a delicious banana and a beautiful dress from her cousin.

Off to physical therapy where they ran with balloons.

We then got a "donut" with sugar on top from panera.  Yes, it was a bagel, but that's ok!

Then we had a picnic with kittens!


Followed by sprinkler time



pancakes in different colors and in different shapes for dinner, presents


cake
 skyping her Mimi and papa, and monsters inc...

What a great day!!!!




Thursday, September 5, 2013

New leg hug!!!

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We had so many issues with the old place, so when I took it and it was not super surprising was doing nothing for her leg. After working with insurance we finally were approved for a new dynasplint. We drove two hours to get Rory a new functioning leg hug. 

 We drove to meet a new orthotic/ prosthetic who informed us that we would need to go through the Dynasplint company to get an actual dynasplint.  Its taken a while, but we now have the actual Dynasplint from the Dynasplint company.  So far, all of the hassle has been worth it because  it seems to be a million times better than her old leg hug!

So last week, we took a road trip to fit  and learn how to use the dynasplint. It's so much easier to use our last one, and you can already tell that it is quite effective. We hope that this will help lengthen her leg the last few degrees. 
Getting fitted!

We were at her physical therapist yesterday and she measured 9° of knee flexion!  Although, that was with me pushing down on her leg, but I'll take what I Can get. Anything to avoid another intensive physical therapy in florida and apossible surgery on her leg. We cannot be happier with the new dynasplint!


Lets hope this works!  

Wednesday, August 21, 2013

Fancy Friday

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Our family has recently created a mew tradition, created by Rory: Fancy Friday. Both girls have beautif dresses in their closet, however, we rarely have anywhere to go that requires us to be dressed up. So we now have Friday. Jon will even get dressed up as soon as he comes home from work, and Rory likes to pick out all of our outfits!  

On Friday we go all out, we don't just wear dresses, we fix our hair, do our nails, and anything else fancy we can think of. We even made bracelets for us all to wear each Friday.  Rory's favorite part about fancy Friday: she gets to wear any shoes she wants!

We only buy Rory shoes that can have a lift on them, but she has a 5 year old cousin, whom she adores, and she gives Rory all of her old shoes. Rory loves to wear them, so she gets to wear them all day for fancy Friday!  

Wednesday, August 7, 2013

New doctor

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New location....New local doctors, and not just a pediatrician- but also an orthopedist, prosthetic/orthotic and physical therapist.  Since we are in an extremely small town we have to drive out of the area to get help.   We drove an hour the other day to meet with Rory's new orthopaedist.  I was upset that we has to drive so far, so we decided to make the " morning" out of it and have some fun.

We got there early so we took her to get a "donut" at Panera bread. Yes, I know they are bagels, but she calls them donuts and loves them, so we stopped. We also got her a croissant. She has some magnets on the fridge and one is a croissant that she always asks about, so she was excited to find out that they do exist.  
she's such a good girl!

It's funny how old habits come back to Rory when she's with a new Doctor. Before we knew it was already asking for the iPad and Marilyn.  For the most part she did really well. 

Her new orthopedist is amazing. He actually used to work with Dr. Paley long time ago on the East Coast. He told us that we were going to the right surgeon and whatever he could do to help us get us down there he would do. I could not be happier with him.

Now wears working with insurance to allow us to go back down to Florida to see Dr. Paley. 

Friday, August 2, 2013

Physical Therapy Photo Friday!

Pin It It's been a while for Photo Friday!  Here she is at physical therapy doing incredible!  I really like the outfit she picked out herself too!

Monday, July 15, 2013

Rory update...one day at a time!

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We have had quite an eventful week and still have more to come.  

Insurance gave us the go ahead to resume physical therapy.  We are going several times a week again.  Rory is doing well, but it is still difficult.  Last week we learned that her leg has “re-gressed,”  we got her down to 10 degrees of knee flexion and now she is at 20 degrees.  

We have had so much going on with the move, Zin, and getting our physical therapy approved.  So we are now working extra hard at doing our at home stretches and wearing her “leg hug.”  It is difficult when we start stretches and Zin will need to eat or is fussy.  So we are doing the best we can.  

Poor Rory now has a sore leg because of all the stretches, therapy, and leg hug.  Her nightmares have also increased.  I would pay any amount of money to have her leg get better.  

We are looking at going back to Dr. Paley’s as soon as possible.  This week we are meeting with an orthopedist for insurance to make sure she does have CFD and get him to refer us to Dr. Paley.  All the insurance hoops are a pain, especially since we have to drive over an hour for this pediatric orthopedist.  

We are going to do what we have to do for her.  I just hope that Rory understands that this is all for her own good- we don't like it any more than she does!  Its difficult to explain to a toddler.  I hope all her pain goes away soon and we will be able to do normal kid things during the week instead of all her doctor appointments! 

She still seems pretty happy though!

Night time stretches!

Monday, June 24, 2013

A little piece of mind

Pin It Sorry for not posting in a while- we have been pretty hectic with moving, physical therapy, her new dynasplint, normal toddler life and our beautiful baby. Also I think i have put her blog on hold for my own piece of mind....I'm not sure what is going on with me lately, but everything with rorys leg is hitting me pretty hard lately. 

Rory asked me yesterday when zin will have to go and see Dr. Paley and I had to explain to her that Zin didn't need to see him because both of her legs are the same size.   Then, of course, asked me why her legs are different....I ask myself that every day!

I don't know what has brought the emotions on: if it is because I'm just completely sick of seeing my daughter cry during our physical therapy, her new  splint, or her reoccurring nightmares but whatever the reason Ive been in a complete crying mess about it all. I honestly think having Zin, who thank the Lord only has one doctor, has made me realize how hard things are with Rory.  Whatever the reason, I will see pictures if her surgery and cry and seeing her with her leg still not straightening is completely breaking my heart. 

Most children who had her surgery are well recovered by now and back to a "normal" cfd life of a toddler.  Rory has had a hard time and is still doing 4-5 physical therapy sessions outside the house per week, followed by three "stretching" sessions with me and dad each day, and now has a new dynasplint to help that leg get straight. It's the hardest thing for me to watch her go through all of this.   

Of course none of this seems to bother her too much.  She doesn't really like her "leg hug" but will tolerate it if we let her play on the iPad for a little bit. I just long for the day when this is all over, but I know we still have many surgeries ahead. 

Monday, June 17, 2013

Beginning again with doctors...

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Rory, Daddy, and Zin at the doctor
One issue that has come up with movibg is that we have to transfer all of rorys doctors. Although her main doctor, dr Paley is in Florida and we don't have to worry about him, we do have to worry about her primary care manager, orthopaedist, prosthetic, and physical therapist.  And this has not been easy!  

We currently are going to start from scratch- with her primary care manager. Since we will be going to Florida soon, we are going to need to get referrals since our last referrals won't transfer. I found out that her new primary care manager has a physical therapy center in the same building so that should be good. 

I know in St Louis there is a Shriners Which should be good for us to have all Iof her shoes made. As for everything else...I guess we will just have to wait and see- 

I just hope everything can get done quick for rorys leg- we have to get that leg straight again!!!

Tuesday, June 11, 2013

Best part about being in the Midwest!!!

Pin It One of the best things about being back in the Midwest is that we are close to family. We are very lucky to only be about two hours from my parents, sister, cousins, and grandparents. I knew I would love being so close to them, but I had no idea Rory would like it so much!

Rory has 2 cousins (and another coming in September) and now that they are all older they love to play!  Her cousin Shannon is 5 years old and could not be any cooler to Rory. Her cousin James is only 6 months older than Rory and will do anything to make her laugh. 

This last weekend we went for a visit.   Every few minuets in the car rory would say, "I want to go to Mimi and Papas, are we at Mimi and Papa's yet?"  It got really old after a few hours!  

The whole time we were there she was inseparable from her cousin Shannon. They got along so good too, no fighting or anything (sometimes they get into big brawls too!).   They played hard too!  

This past weekend they were all about hugging, kissing, holding hands and having the most fun possible!

I think everyone likes to see Zin too. They didn't get to see Rory much as a baby, maybe a few times a year. Last time we were in town we got the car seat out of the car and before I knew it my sister had her out and was in another room with her. 


Today Rory asked me when she could go back and see her Mimi papa and Shannon. She told me they were her best friends!  It's really a treat for me to have my kids grow up around their family!  

Thursday, June 6, 2013

Moving!

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The past few weeks our family moved half way across the country. We packed and moved ourselves, which we quickly learned is near impossible with a infant and a wild toddler. 

Rory was so sweet when we were packing. She wanted to pack her own bad too so she would pack random stuff in a box of everything she wanted to take with her. When she would go to sleep we reopened the box contents and found her shoes, socks, some barrettes, a couple crayons, some of her toy pots and pans, and some colorings from her cousin. We also found things we couldn't find around the house like the packaging tape and permanent markers we used to mark each box. 

We would wake up around 4am to pack and the kids would surprise us at waking up around 5. We weren't being loud, they just decided to grace us with their presence. 

It's extremely difficult to tell a toddler about moving. I wasn't sure she understood that we wouldn't be able to go to little gym anymore or see her friends. Rory kept sayin she was going to get a new house, with a new room, and a new car. We have no idea where the new car idea came from but we let her think she could get one. 

We are going to miss Virginia Beach so much!  We loved being so close to the beach and there was always something fun for families to do. We also made some great friends there who we will miss dearly.  However we are anxious for the next chapter in our lives. 

Wednesday, May 29, 2013

Rory's Dynasplint

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We finally got rorys dynasplint, or her leg hug. Her leg still is t straightening from her past suegeries. She has been doing amazing and now only has 10 degrees of flexion to gain befoee her leg can straighten like normal again. I hate that rory has to have another new piece id hardware but if it will help steaighten that leg i will make her wear ir as much as pissible. 

We went to her shoe doctor to ger jt measured and to learn how ir worked. It's not what I expected, it's more "breathable".  To wear it her knee needs to be flexed (which is clearly not an issue for her).  You get the circle piece directly on the knee joint and tighten the Velcro strap to secure the knee. Then you tighten the strap on her thigh and the strap on her ankle. 
There is a knob on it for you to turn and we turn it so that her leg is straight, or as straight as we can get it. She can't walk with it on, obviously, so we try to have her wear it at bedtime, naptime, and if I let her watch a little tv. 
Sleeping with it is not the most fun, she often wakes up screaming for us to take it off. She does like it when I let her wear it when she gets to watch TV, since TV is a special treat at our house. 

She is on her last 10 degrees of straightening and I know that she can do it. Like the last 5 pounds are the hardest to lose, apparently the last degrees of flexion are the hardest to gain. I hope the "leg hug" can help us achieve it as pain free as possible. 



Wednesday, May 8, 2013

Rory's getting a Dynasplint

Pin It Yesterday we were fitted for a dynasplint.  It is a straightening device for her leg that she will wear at night.  After talking to her physcial therapist I learned that sometimes the last few degrees of straightening could be the hardest, so my hopes are that the dynasplint will help. 

These Pictures are of her getting measured for her splint. This they put the sock on her and then did a Cast mold. She didn't mind the sock. But he didn't getting the cast mold off, Because some of the cast was stuck to her leg.

When Rory was in the hospital we called the blood pressure machine the "arm hug" so we are referring to her dynasplint as a "knee hug." hopefully it will ease her into wearing it a bit, since it will probably be a little awkward at first.  Because she is so small we have to get it specially made for her, many of the prosthetic places don't have one in stock that will fit her little leg.

I am quite curious to see not only how she will do with it, but also if it will help.  I wonder if this delay in her leg straightening will cause a delay in her next surgery.  Hopefully we can call her doctor and inform him soon that her leg is straightening a complete 180 degrees and he will inform us of our next steps in our CFD journey....but who knows. I am trying to be as optimistic as possible; but at the same time am so sick of seeing Rory struggling with her leg.  Sometimes it is really hard to be a mom....lets hope this dynasplint can work its magic!

Tuesday, April 30, 2013

Physical Therapy Progress!

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Although we have a new born in the house, which is difficult on its own; we also have a crazy toddler; which again is difficult on its own....but on top of everythign we have a crazy toddler who is still rehabilitating from her surgeries- and it is difficult!
video

Rorys favorite is getting to use the treadmill!
Rory is currently going to physical therapy as much as possible- 4 times a week (the office is only open four days a week).  We also do our physical therapy homework three times a day at home for 30-45 min each time, depending on how sore her leg is or how fussy she is).  We will do everything we can to keep her from screaming during our "Stretches," and lately that is playing with the ipad or watching the Lion King!
Rory on the big swing (one of her favorites)

She doesn't mind her physical therapy either.  We to make it as fun as possible.  She has two physical therapist and I couldn't be more happier with either of them.   They let her play with toys and I sit on the sidelines cheering her on as much as I can.  Zin is there too, and she loves when I have Zin help and play too.

fishing


As of today, her leg has straightened by 15 degrees!  We still have 10 more degrees to go, but I have no doubt in my mind she can do it!  I am so proud of her- she has had such a hard time and is such a trooper with everything.

Tuesday, April 23, 2013

Sick Bug!

Pin It Rory was sick this yesterday morning. She woke up throwing up and continued to throw up throughout the whole morning. It was so difficult with Zin too!
Rory has never thrown up like that before, normally she would throw up pnce- maybe twice- and be done but this time she was throwing up and throwing up throwing up. The only thing worse than this was her going to surgery. I just feel so bad when it looked you with those innocent eyes and see they are hurting.
I had flashbacks of Florida today when she started feeling better and wanted to eat and drink. It reminded me of the second surgery she had and how she had to wait until after the surgery to eat and drink and she didn't go in surgery until 11:30 AM when she was up at 6 AM. Todau She ate drink a little bit but would almost instantly throw things up, it was awful.
However in the afternoon she perked up. I could tell by the way she was acting, the color in her face, and the fact that she was not super warn! . She ran up and give me hugs- It was wonderful! I think she's on the mend now and all is clear!

Friday, April 19, 2013

Photo Friday!

Pin It Sister love!

Thursday, April 18, 2013

Rory's Hospital reaction when Zin was born

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I went to the hospital around 12:30am on a Monday night.  Luckily, we had our friend come over and watch Rory while she was sleeping.  I was nervous about her waking up and not having me or Jon there, but she did really well.   I had our friend take her to her physical therapy appointment in the morning so things would be somewhat normal, and her physical therapy is right next to the hospital so I had her stop by on her way.

I was unsure how Rory would act seeing me in the hospital bed.  At first she just got a strange look in her eye.  She saw my catheter and said, "Mommy, I had one of those when I was in surgery."  She sat by me but didn't make eye contact with me or look at me at all. She was hesitant to give me a hug before she left for her physical therapy. I felt bad, I know she was reminded of her time in Florida.
before Zin came....

When she came back from physical therapy Zin was born.  although she was very concerned with the small baby in the room, she looked at me and i could tell she was concerned with me being on the hospital bed. I reassured her I was ok, and she got to meet her sister. The look in her eyes was priceless- she looked at me like, "these people were't kidding, this new baby is real."  

meeting Zin
After she met her new sister, they took Zin away for a bath and her heat lamp and Rory was able to stay with me. She reverted to Florida behavior immediately. She laid with me in the bed, held my hand, and asked to watch the Lorax on the iPad. She was quiet, but would occasionally talk to me about things that were similar with this hospital and when she had her surgery. 
Things got better when we switched rooms and I wasn't hooked up to all the machines!

She has a good memory, but I'm hoping as she gets older the memories of Florida and her surgeries will fade.

Friday, April 12, 2013

Photo Friday!

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Wednesday, April 10, 2013

Our New baby!

Pin It We have a new baby in the house! We welcomed our Zin last week and she is amazing. She currently has her days and nights mixed up, but hopefully we can get her on track soon. Rory is a great big sister. She gets really excited for diaper changes! It's also been a hard adjustment for Rory, which I will go in detail with more later- right now I've got 2 beautiful girls napping and I'm going to join them!



Monday, April 8, 2013

Little Gym Post Op

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She goes to Little Gym too- the people there have been nothing less than wonderful.  Rory has been going to Little Gym since she was 4 months and is very comfortable there.  All of the workers know Rory and her condition.  They are more than welcoming to have her in their classes.  After her surgery, her gym teachers were concerned with her recovery and making the equipment and the activities they did would not hurt her leg or hinder her recovery.  

First time walkign after surgery
Normally at the gym, all the kids and parents remove their shoes, however; they let her wear her shoes in the gym.  We have to clean them each time before class, but we don’t mind.  I think its great that they welcome her into the gym and let her attend all the classes.  
Post-op, the Gym has been a complete blessing for us.  They have bars there that she could hold on to and walk.  I remember seeing her use the bars and doing “assisted walking” for the first time- it literally brought tears in my eyes!

Rory took her first steps post-op at the Little Gym.  She uses her leg so well there and she doesn’t even know she is doing part of her physical therapy!  Normally at Little Gym you can only go 2 times a week, but we have so many make up classes we go 3 times a week, or until her knee is straight.
Walking better each time!

I was in no way shape or form asked or compensated to write this post- I just wanted to share our experience of the little gym with everyone.  I really do appreciated what they have done for Rory and the milestones she has accomplished there post-op are unbelievable.  


Friday, April 5, 2013

Photo Friday!

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This face cracks me up!

 

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