Tuesday, December 30, 2014

Doctor update

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We had a not so good day yesterday. Let's start with the good news first- 24mm of bone- it's very exciting! I love growing bone! 

Now for the not so good. 
Rory has physical therapy every day at the Paley Institute. She is not a big fan of physical therapy, she is in this "mommy mode" where she only wants me to touch her and do anything with her leg at all, which is funny since when we do bath, pin cleaning, and stretches she screams so loud everyone in our apartment buildings can hear! It's nice that she has so much trust in me, but she needs to let other people help her too. 
Each week she does measurements on her straightening and range of motion in her knee. Every time she does the exercises with her physical therapist, she resists them completely. Not only does she resist, but she kicks too! When she does them with me she screams and sometimes kicks, But does not resist the way she does with her therapist.
So today, at or they took her measurements it was nowhere close to 90°. Her straightening was fabulous, but the wonderful 90° bend we had last week has now become about 78. Her therapist said that they could've bent her more had she not been resisting so much. I was not a happy mom.

Right after her therapy we went to her doctor, Dr. Paley was out of town so we met with Dr. Robbins who is wonderful. When he looked at her measurements he suggested decreasing pain turns from four times a day to three times a day until her range of motion improves. This was hard to hear because it knew she didn't have her range of motion because she was being stubborn (which she must get from her dad- hahaha). If we did only 3 pin turns a day it would put us in Florida until about May or possibly June. 

There are three main reasons for stopping lengthening or ending in early. One of them was nerve pain, the other: infection (which we have had our fair share of), and lastly range of motion. If we keep going down a few degrees in our range of motion each week eventually she will have no range of motion. I was completely disappointed and upset leaving the appointment- because I know she can do better than 78 degrees! 

As we were packing our gear Dr.Robbins came back in and said since it was her first low range of motion to continue with four pin turns, but take measurements again in a week and if the measurements are still poor then we are going to have to reduce pin turns. 


So...until Rory does better at physical therapy she does not get any special treats. Normally we have a little dessert after dinner, and we didn't have it last night. The biggest consequence is that today at physical therapy i was not allowed to go back in the room with her. She was crying the whole way to the physical therapist office and did not want to go by herself, once she does not resist her therapist and lets them help her; then Zin and I can go back there and be with her. She is in there right now and I know it's almost the hard part of her stretches so I pray she does well. Lord knows I don't want to be here till May or June! 

Monday, December 29, 2014

Doctor Day!

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Today we have another doctor appointment.  Her doctor appointments are different from the appointments we see the PA's for- today is where they will take an X-ray and measure how much bone she has actually grown and see how that bone is doing.  These days are always pretty nerve wracking for me (hence me blogging early in the morning)!

I am always so nervous, and being a mother of a child with CFD- I have every right to be nervous, one X-ray could mean anything: a surgery, a increased pin turn, a decreased pin turn, extra time here in Florida...anything.  I have been so concerned with her pins and the infections that I always forget to wonder how much her bone is growing and if it is growing on schedule.....Today I find out!

I will probably have the silly feeling in the pit of my stomach all morning, up until we talk to the doctor, I have learned to bring ginger everywhere I go ;)

I will tell you this, there aren't words to describe the excitement I get when the doctor tells me how much her bone is growing.  To see her pre fixater X-ray side by side to current X-ray: its completely unexplainable.  I feel like screaming and crying and jumping for joy!  It just shows that all the hard work we do here at the house is working!  The screaming and crying during our stretches, its working; the daily physical therapy, its working, and we have to stay on top of it!  Its one of the best feelings I have ever had in my life- I get tears in my eyes now just thinking about it!

So, I'm drinking my coffee, and I feel like a young child waking up on Christmas.  Im so excited to see what Santa brought, but in the back of my mind there is the little voice telling me Santa may have just brought coal.   Right now, I have to be optimistic, there is no reason for me to be pessimistic.

I can't wait to tell you all how much bone we have!

Thursday, December 18, 2014

90°

Pin It She did it!  She hit 90° today and her physical therapy. I couldn't be prouder, I feel like having a party. But since it's just me and then here we are going to bake cupcakes instead! Could not be prouder of my girl! 

Thursday, December 11, 2014

Bone growth!!!!

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We just went in for our two week check up. And good news, Rory has grown 8 mm of me bone!  The way her bone was cut in surgery it was not fully straight, which is normal, and is why we do not have a full centimeter of growth yet.

 Everything looks pretty good except the bone is solidifying awfully quick. We are going to go back in one week instead of two weeks just to double check the bone and make sure it doesn't get too hard too fast. If it does start to solidify we may have to increase her pin turns from four quarter turns a day to five or six. Although this may sound good to you some people meaning the bone will grow faster, all I can hear is difficulty and tightening of ligaments. Physical therapy is already extremely difficultand I really do not wanted to get and he harder!  Right now, I am not going to worry about anything until it happens, since there is nothing I can do about it now!  However it is always nice to know that the bone is growing!

I will try to find some spare time to work on updating everyone more frequent however both girls have me preoccupied right now!
 It is just so reassuring knowing that bone is growing!

Thursday, December 4, 2014

Video From Rory!

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video

Sunday, November 23, 2014

Update

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Rory is doing great!  It was probably the best surgery she has had!  She's doing so well!  Thanks for all who have asked!  More updates to come!

Sunday, November 16, 2014

Cat Vacation!

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Today we took out cats to be boarded while we go down to Florida.   We gathered up all of their supplies, toys, food and put our three beasts in cages. Rory has grown rather close to our youngest cat, Smudge. Smudge was never a nice cat at all, however; after Rory had her 4th surgery, we returned home and Smudgy became Rory's best friend. 



Smudge let's Rory pick her up and play with her anytime she wants; yet will run away when my husband enters a room. Rory and smudge are best friends and play every day. 

We told her we were taking the cats to live somewhere else for a while and she got sad. She "packed" a pillow, blanket, and crayons. 



Today was very hard for Rory when she had to see her Smudgy go.  She was crying and saying how she didn't want to be without her kitty.  She read her books while she was in her cage and then hug to the cage. She has already started making Smudge letters that we can send from Florida.


It has helped that we told her Smudge was having parties with other cats. So now she thinks the cats are on vacation!  

Zin will miss Emmy- that's her favorite!  And she gave Emmy sunglasses incase it was bright on her vacation!  


We are cat people!

 

Monday, November 10, 2014

Rory's video!

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Here is a short video about Rory and her life with Congenital Femoral Deficiency.




Rory's video!

Wednesday, November 5, 2014

Less than two weeks....

Pin It In less than a week it will be surgery day...at least I'll have my girls with me!

Friday, October 10, 2014

Staying Positive

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There is so much that goes into a lengthening: its very overwhelming.  Not only is it a major surgery on your child, but its a complete life change for your family!  Its 4 months of relocation, 2 places to live, being separated from your spouse, airline tickets (especially during the holidays, pin site cleaning, dr visits, daily physical therapy, and a great deal of financial stress.  It is very easy to just see the negative in everything….

But i have to remember the positive; Rory is overall healthy.  She has 2 legs and after 3 lengthenings, she will have 2 legs the same size for the rest of her life and we will  never have to go to Florida again…and probably never will :)

So, Im trying to think about ways to make this lengthening experience somewhat enjoyable for her.  Rory can do everything in her fixater, except run and jump so Im looking for fun things in the area.  Im scouting out playgrounds, malls, outdoor activities: anything she would like to do.  The ocean has bacteria in it so we won’t be swimming in it, and when we were there for 2 months with her super hip surgery we volunteered at the animal shelter playing with the animals, but I really don’t want to get any animal hair an slobber in her pin sites.  


One day at a time….I have to stay positive, not just for my sanity; but for Rory because she picks up on my vibe.  So we are just going to make the best of it….2 flat feet on the ground….its pretty awesome!

Saturday, September 27, 2014

Lengthening is Scheduled

Pin It           Her lengthening has been scheduled, and the fear and reality of it all has set in.  Although Rory has had 6 surgeries before- the external fixater is in a whole league of its own.  I want to thank everyone that has donated!  This will go to travel and lodging; and flying dad out if we can!  Everything helps!  She is going to need new shoe lifts (insurance won't cover them), new underwear (and most other garments on her hips) specially made because she will have one of her pins in her hip bone, and a lot of love.  Thanks everyone!

http://www.gofundme.com/Rorys-little-leg

Monday, September 22, 2014

Rory's Surgery Update!

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I want to apologize for the delay in blog posts- we have been rather chaotic; but that is no excuse…I will try harder!  

Now, for the Rory update.  She is recovering well from her 6th surgery.   Although this surgery was a smaller procedure compared to her previous surgeries; it was one of the hardest ones we have ever had mentally.  Rory is now 4 and understanding more; she knows she has a small leg, and she knows we are working on getting both feet to fit flat on the floor, but the whole concept of surgery is difficult for a 4 year old to understand.

Simple things Rory does all the time, like x-rays, turned out to be a major obstacle to overcome.  It was also my first time to go back to the surgical suite with her.  They make you put on the “bunny suit” and once I had that suit on and they started wheeling us back Rory had an extremely difficult time.  She was literally truing to jump off the bed and it took many people to try and hold her down just to get to the surgical room.  Once we were there she refused anesthesia, and kept yelling “mommy, don’t let them hurt me.”  And yes, I'm crying right now reminiscing about it all.




Before her procedure I made sure Rory knew what was going on.  She wasn’t scared too much about the surgery, but had many melt downs leading up to the procedure where she would scream, “I don’t want mommy to leave me.”  I am extremely thankful for Servando, Dr. Paley’s PA who I informed about her fears that I wouldn’t be there when she woke up, and I got to see her a few minutes before she awoke.  



When she woke up her biggest concern was the IV in her wrist.  When she tried to leap out of the bed again she realized her leg hurt.  They allow only one parent back at a time, but once Rory was recovering well they moved us into another room where Dad and Zin could come see her.  Quickly, we learned that Zin does not like to see her sister in pain.  She cried almost as loud as Rory.  

Having my dear, sweet Zin around was difficult too.  We left Rory’s pain medicine at the hospital and Dad went back to get it.  I had Rory laying in the hotel bed crying and Zin crying wanting to get on the bed.  I put a Baby Signing Time video on the iPhone and let her sit in her pack and play while I tended to Rory.  It made me wonder how I am going to survive her lengthening!

The first day after surgery is always the hardest.  She did so well though, and began walking so much sooner than she had with her previous surgeries.  I am hoping she will use that strength and positivity with her lengthening.  




She did have issues healing…she is an oozer!  We learn a little more every time we go down there, and we have learned to stay a few days later in Florida because you never know what will happen: and we are so thankful we did.  We had to go in 2 days for bandage removal because of the discharge.  We started her on antibiotics and now she has healed beautifully.  

Next up….Lengthening.  That will consist of Zin, Rory, and myself for 4-6 months in Florida.  I am just hoping that Dr. Paley will call me and say her leg is growing and no external fixated will be needed…..






Wednesday, July 30, 2014

Good News about Rory's Anesthesia!

Pin It A while ago my uncle had to have surgery.  After the surgery, he had some issues due to the anesthesia.  My mother informed me that these issues occurred because he is a carrier of pseudocholinesterase deficiency; or in normal people language: his body is slow to break down the anesthesia, especially drugs that are used with breathing tubes.  Pseudocholinesterase deficiency is genetic; however; neither myself or my husband have had surgeries so we didn’t know if we were carriers or not.

Rory has had 5 surgeries, and after each surgery she has had some “spasms.”  I am unsure what the medical term is for the spasms; but I have talked to other parents whose children have had the same surgeries Rory has had, and have had similar reactions.  The spasms are completely horrible; at first I thought she was having a seizure.  They are short, only lasting a minuet or so.  When these occur, Rory is awake and will uncontrollably shake, her eyes get very glossy and sometimes will roll back.  The last surgery she had we waited a few days post-op to go home.  She ended up having one of the “spasms” in the plane....It was one of the scariest times of my life.  

In order to see if Rory is a carrier we had to get blood work done.  Not sure how many kids are a fan of blood work.... it hurts and with Rory it is always a fight.  We had the blood work taken the other day.  Luckily, our neighbor that Rory knows was able to take it from her; which helped, but she still screamed and cried.  I hated having to get it done, but I had to know before her next surgery if she was a carrier or not, and if this could be why she gets such bad spasms.  

She did get to play on my phone while she was there and after she had a ring pop....It made everything a little bit better.

We got news today that she wasn’t a carrier!  



I couldn’t be happier!  My poor girl has gone through so much she doesn’t need one more thing to worry about (or maybe I don’t need another thing to worry about ;).  I hope her “spasms” are just a thing that children have when they are young and have anasthesia.  Hopefully, she will grow out of them.  I guess we will find out soon. 

Thursday, July 24, 2014

Its coming....Rory's 6th surgery

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It is that time again. Rory's sixth surgery is rapidly approaching. We had about a month before we have to go back down to Florida and visit Dr. Paley. 

Luckily, his procedure should be a relatively simple one… (I guess as simple as operating on your three-year-old can be....however; I don't have my hopes up too high because I know how our last luck with surgeries and surgery recovery have been). Dr. Paley will be removing all the hardware from her leg that he put in last September. He may or may not remove the screw from her hip , it depends on how her xrays look when we get down there.
   

We have been a little bit delayed on our limb lengthening journey. At this time, we should have had one lengthening done already.  After her super hip and super knee surgery her leg did not straighten and she had to have hardware put in her knee.  I was a little doubtful on whether the hardware would actually straighten her knee to full extension where it was post-op, but now her leg bends and straightens wonderfully and I will never doubt it again!



Im very hopeful that we will have a simple and quick procedure with Dr. Paley.  Then we will wait a few months for her to heal and then Rory will have her first lengthening procedure where she will have an external fixator put on her leg and get 8 cm of new bone.


After these next two surgeries (and her extensive time in her external fixator), we should have a few years where we do not have to have any surgeries for a while (I'm aware stuff will pop up, but hopefully just small outpatient surgical procedures). So, I am welcoming the next two surgeries so we can get that over with as quick as possible.  I know the next year ahead of us is going to be the hardest year of my life, but I also know after that we will have a few years of bliss! 

Wednesday, June 25, 2014

Shoe lift repairs....again!

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Once again Rory's shoes have completely fallen apart. We have driven them again to get repaired (an hour and a half away...arrg!).  We now have realized how completely necessary a second pair of shoes are and are on a mission to get some!

 I am not sure if Rory wears her shoes too much (she normally only wears them outside, and take them off as soon as we get inside) or is just extremely active when she wears them, but they just continue to fall apart.  I can't imagine only wearing one pair of shoes!!!!


So...

We are now working on getting her another pair. She is really looking forward to picking out the new shoes. In the meantime Rory has really love wearing all different types of shoes. We bought her some shoes that look like dinosaurs that she could not love more. He also really likes to wear sandals like her sister and of course her sparkly red shoes.

Although Rory normally loves wearing all other different types of shoes, she has realized how the lift helps her out. Just today, she wanted to ride her bike, the red rocket, the other day. We got on the road for about a block when she had a hard time reaching the pedal.  Although riding her bike is one of her favorite things to do, she soon realized how it is very necessary for her to have her big show to ride more effectively. We look forward to picking up the shoes this week into getting a nice new pair soon!

The repairs look good!

Tuesday, May 13, 2014

Happy Mother's Day!

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Our Mother's Day cards this year
 

Yes, my Mother’s Day post is late, but I was busy enjoying the weekend with my girls.  I would like to wish a special mothers day to my mother first off- she is by far the best mom ever.  Ask my sisters, my children, her other grandchildren, and any of the kids she takes care of at her school: she’s the best



I would also like to wish a special mother’s day to all the PFFD/CFD mother’s out there.  It’s hard being a mom and having to watch your little one have surgery after surgery and be in pain.  My heart goes out to you all, and I hope you all have a wonderful day.

I had the best mother’s day- I have two wonderful girls and just enjoyed spending tiem with them.  They showered me with gifts, delicious food, and balloons (which were a huge hit!)  


Happy mother’s day!

Shoelift Repairs

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There are several complications that arise when you have a shoe lift.  Normally, we like to have more than one pair of shoes for her, but currently only have one pair for Rory.  One complication that we have had in the past and are currently dealing with, is that the lift can come apart.  Her shoes began coming apart and were flaking on the toe, and we knew from the past that once a little bit flakes- its only a matter of time before it all flakes!



I called up her prosthetic and he informed me that we could bring the shoe in for a repair (we were happy because it would take a lot of time to money buy, ship, and make whole new shoes for her....again, another reason why it is SO good to have 2 pair of shoes for her!).  The girls and I made the morning out of, we drove almost hour and a half just to drop off the shoes.  We had some fun, went shopping and ate “doughnuts” at Panera (which Rory requested) and on the way home she was excited to watch Rudolph the red nosed reindeer on her phone!  

We are waiting to pick up the shoe... She has a lot of her cousin’s old shoes- some are flip flops, some have little heels, some are sandals, some are athletic shoes- but all of them are amazing not just because they were her cousins, but because they don’t have a lift on them!  Rory loves wearing any pair of shoes she wants, She told me today that she missed her lift- and that she is faster with her lift on


I think this little “break” from the lift is good for Rory too- When she walks without her lift her leg gets really wonderful extension, which is one reason we are still going to physical therapy.  For the most part, we are enjoying the different shoes she gets to “model” each day!


David and the Giant

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At Rory’s preschool they had a musical of “David and the Giant.”  Rory had worked so hard each day singing and knowing her lines for the musical.  She sang at school, sang at home, in the car- she sang her little heart out.  

The day finally came and Rory woke up excited.  I got her a corsage at the flower shop, (actually I got her a boutonniere, because the corsage’s were $30 and I could easily see Rory ripping it off after a five minute.  I put the boutonniere on a bracelet and she actually loved it!).  She had never been to a flower shop and loved smelling all the different flowers. 

When it was closer we got ready, everyone in the house got “fancy,” probably more fancy than we should have been- but we didn’t care.  We all fixed our hair, wore dresses, put on perfume, and Rory was thrilled to put on her sparkly shoes (without her lift)!  



It was finally time for her performance.  I took pictures while holding up the video camera.  Zin loved it too- she was staring at her sister the whole time.




  It was the cutest 20 minuets ever!  Rory sang the loudest too!  After the show Rory got more flowers.  She was so proud of herself and we were so proud of her.  It was also nice that we all had ice-cream afterwards! 


Thursday, April 17, 2014

Rory update!

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The other day we had x-rays of Rory's leg taken and sent down to Dr. Paley. This is usually the time where I start getting very fussy and nauseous, and don't sleep- you never know when you will have to drop everything and go in for a surgery. We expect we thought that Dr. Paley would want to have the hardware removed from her leg and we're expecting a trip down to Florida. 



We got good news, her leg is straightening wonderfully, but he would like the bone to grow a bit more straighter. We are now going to take some x-rays again in three more months. We were planning on and August/September lengthening procedure for Rory, but we want her leg to be fully healed after the hardware is removed before the procedure. So now our plans are postponed another few months-which is fine for most people are, except I plan neurotically for every detail in our day and of course a 4-6 month surgery!  



 So, around June/July we will send more X-rays, I assume at that time we will remove the screws and the 8 plate from her knee and possibly the screw in her hip. After she is recovered from that we will then do the lengthening (which I am completely dreading, however at the same time just want to get it over with already!). 

We are very excited that her leg her bone is straightening the way it should and she can now fully straighten her leg!!!  It is also a relief that for the first time in over a year and a half we will not have to go to physical therapy 3-4 times a week!  We are going to finish her last few sessions, but we are really looking forward to just enjoying being the kid this summer.  Playgrounds, pools, anything and everything outdoor here we come!!!

Thursday, March 20, 2014

Homemade puffy paints

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Today we made homemade puffy paint. This was one of the easiest recipes to make an something Rory enjoyed so much. We even had Zin playing with the puffy paint... however she ate most of it.  Normally I would be upset that she was eating it but it was just flour, water and salt so I wasn't too upset (and tried to get almost all out of her mouth). 

 To Make the puffy paint all you do is take 1 tablespoon of self rising flour, (and if you don't have some you can just make your own with one cup of all purpose flour, half teaspoon of salt, and one and a half teaspoon of baking powder.) Then add 1 tablespoon of salt.  Then add some water so that is kind of thick like yogurt.   I had Rory mix in food coloring,  she loved to mix the colors and see the new colors appear!



Then we painted till the paints were gone! 


After you're done painting just pop it into the microwave for 20 to 30 seconds depending on how thick your paintings are and they will pop up. We had so much fun with this together; it was so easy to make and so easy to clean! And we loved that little Zin could do it with us too. 


Tuesday, March 4, 2014

New Shoes!

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We finally got some new shoes for rotary! It has taken a very very long time to get them but we finally got them. We have to drive almost an hour and a half one way to the prosthetic. We had to go to a few appointments and meet with them, get them made, and then fitted- but it was well worth the drive. The shoes are newer and most important they are lighter than they have ever been. 


Her prosthetic/orthotic understood everything we wanted for the shoe. He made them perfect. She now has shoes that are not too tight, and even wears them even more than she normally does.  



Unlike her previous shoes these are flared out at the bottom and have a curved toe for when she walks. They also have a small send strip of leather- like material around a lift to protect it from every day wear and tear. Her last lift was 8cm, but we have decided to make this one 7 cm to create maximum extension since her leg still is not straight home properly. She loves the shoes because they are pink and have flowers on them!  They are also athletic type shoes like mine, and she says that they make her run faster!


We are so happy to have them!

Wednesday, February 5, 2014

Gymnastics Girl!

Pin It Rory has started gymnastics!

I wasn't sure how I would do with her wanting to be in a gymnastics class. She had done little gym in Virginia, and was always very, very good at that; but a gymnastics was a little bit different....especially now that she's older and her discrepancy is larger.

Luckily, I have a wonderful husband that assures me she will be ok and I have the voice of Dr. Paley telling me that if I hold her back, she will learn to hold herself back (and that is something I never want her to do.)

So...we went to gymnastics and tried it out. I felt pretty nauseous the whole time!  She loved not wearing her lift and being in bare feet. I was so worried that something may happen- (and yes, I'm well aware that I will probably think This for the rest of my life.). But the only thing that happened was how absolutely amazing she was. She jumped in the class and it was as if had been doing it for years. 


 As her confidence and smile grew, my nauseous ness faded: And even though parents are more than likely supposed to watch quietly from the sidelines, I was a loud mom cheering and clapping for her daughter.  (Zin enjoyed watching too ;)

After the class and teachers came up and told us how they were amazed with her upper body strength is- which is what we have always been told.

I'm so glad we found something that she enjoys doing. I think this is the best physical therapy for her leg too...It also doesn't hurt that she gets to pick out a leotard; which if it was up to her she would not take off.


My daughters amaze me everyday...I am one proud mama!

Wednesday, January 8, 2014

3 month post op X-rays/ Rory update!

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It's time for post op X-rays!  Although Rory has had more X-rays in her 3 years than me and my husband have had our entire life, they still scare her a bit. We went to get some the other day to send to Dr. Paley.  

Jon and I are ol' pros at this process too and when we saw the X-rays we knew right away that they would have to be redone. We told he technician but she said we would have to wait until we got a new prescription. 


We sent the X-rays anyway....sure enough we need to get them redone- so as soon as we can maneuver around our foot of snow we will get them retaken. 



We still do physical therapy 4 times a week.  Lately Rory has been extremely tight- when se wakes up in the morning she limps on it and even crawls on the floor. She says it doesn't hurt but is really tight. Her most wonderful PA with Dr. Paley has instructed us to do stretches first thing in the morning with her and again several times during the duration of the day.   

I can do the morning stretches pretty easily because she wakes up before Zin: but during the day is harder. At first Rory was pretty upset we had to do stretches- but I let her play with the iPad so it's a win win now. 

Zin is doing great too- she loves Rory and will watch her every move. We have Zin do "stretches" too which Rory likes- I know my little Zin is going to help her older sister out so much in the future. 

I'll keep everyone posted after this snow melts and we can redo the X-rays!  
 

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