Thursday, January 31, 2013

New Cast and X-rays!

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Today was the day we were going back to Dr. Paley’s.  We were going to have a follow up to see how her incision was doing and also to get a new removable cast.  I was pretty nervous about this appointment.  I wasn’t sure how Rory would respond to anything.  She still wasn’t taking any pain medication and her rash was  really nasty and making her uncomfortable, so I just hoped the rest of the day would go better.  
neck looking worse
She knew as soon as we drove to Dr. Paley’s office Rory began crying.  She wasn’t sure what why we were there, but she knew the building.  “Please, mama, no doctor,” as if I wanted to be there at all!  She was so scared.  She had just been through a huge traumatic surgery and was scared of everything and everyone.  I was just as scared for her.  
First thing was the x-ray.  I couldn't’ go in with her because I am pregnant, even though I knew she was more than fine going in there with Jon, I still wanted to be with her and comfort her. I could hear her crying and screaming all the way in the X-ray room.  I waited outside until she was finished, tears in my eyes.  She came out all red eyed and said, “I got x-rays, mama.  I did a good job.” 
her bar and screws in her leg
“Yes, Rory, you did a fantastic job.”  We got her x-rays back and were able to see her new hardware.  She has a screw in her hip, a metal plate and 3 screws in her femur.  She is one tough girl.  
holding on to mama
We then went to get a new cast.   Once again, she was scared to death.  I was in there while they took the cast off and put the new one on; however I didn’t see anything.  She had a hold on me and I wasn’t going to let go of her.   Her new cast split in half, and had velcro wrapped around the waist, her right ankle, and her left knee.  She is so much stronger than I could ever be.  
new cast
I got a view of her incision that day.  It was a lot larger than I thought it would be.    Dr. Paley came in to look at her.  Her x-rays were looking good, and her incision looked good.  There was one spot on her leg that was redder and darker.  He informed us that it was because her leg had been open for so long during surgery that the cells may have started to die.  Instead of staying down in Florida for her physical therapy and getting a 6 week x-ray there we could go home as long as we did everything at home.   We would still have to do physical therapy a few times in Florida; because her surgery is so rare we had to make sure we had the right physical therapy.  We made an appointment the next day.  
We immediately got on the phone and started coordinating everything.  The though of going home and being home for Christmas was music to our ears.  I was still nervous about not being close to Dr. Paley, but I wanted to be home!  
We made arrangements with physical therapy, made arrangements for home, and booked some airplane tickets!   We thought it was an early Christmas present...

Wednesday, January 30, 2013

hotel home continued...

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We had nightmares again that night.  She was again asking for us to “Get her out” and that she was “Stuck,” but still refused any pain meds possible.  We also had to get a new bedding set since she soiled the bed in the middle of the night.  I was hoping that something would work.  We tried applesauce, ice cream, hiding it in juice, sadly; we even tried holding her nose, but nothing worked.  She refused all of the pain meds.  
My mom and dad could only stay two days so they left early that morning.  Rory enjoyed all of their company and didn’t want them to go!    I didn't want them to go either, I had no idea how things would go at her follow up appointment tomorrow!
back rash
Her rash had gotten worse today.  We gave her as much time on her belly as we could so it would dry out.  It still didn’t seem to bother her, just looked really really bad.  We would get it checked first thing tomorrow at her doctor appointment.   
tummy time
To help with comfort, we made a little bed on the floor in the hotel room.  We propped up several pillows, put blankets on the floor, and would lay there reading books.  We napped there too.  She also loved to lay by the Christmas tree that papa gave her, it brightened up her spirits a lot!    
little bed on the floor
loved the christmas tree from papa
We also took her out in her wagon as much as possible.  We filled the wagon up with pillows and took her all around the hotel.  The weather in Florida was nice then so we were able to go for walks outside.  I was still very hesitant to take her in the car so we just walked around the hotel (since the hospital is not in the best neighborhood.)  
wagon ride
We tried everything we could to make things “normal” for her, but it was so hard with her in her cast!
I just prayed tomorrow was easy for all of us! 

Tuesday, January 29, 2013

Hotel Home!

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The first night in the hotel was completely sleepless for us all.  We thought things would be better out of the hospital, but we didn't take into consideration that Rory would have really bad nightmares.  She was up most of the night just scared.  I had to constantly hug her and let her know she was ok.  I think it was also hard for her because she was in the spica cast, she couldn’t move at all.  It was a hard night, but we were out of the hospital- so we were good!
very happy to see her mimi
We gave her pain meds before bed that night, but that was the last time she took them.  Before we came to Florida, she loved medicine and would always ask for more- even the gross kind.  She, now came up with an Oscar winning performance for spitting out medicine.  Over the next few days we tried everything to get her to take them and nothing worked. 
The dreadlock in her hair had grown so much since she was in the hospital.  We thought we were going to have to cut it out of her hair.  I had no idea what to do with it- Rory’s long blond locks and beautiful and we didn’t want to cut them, so I figured I would have to try and get it out.  The only issue, Rory was so sensitive to everything, anything that may hurt her was intensified and hurt 10 times more than normal.  I was prepared to cut it, but wanted to try to comb it out.  
dreadlock was SO big!
With all of her nightmares, we were up early that morning.  She was still very “out of it” so I thought it would be a good time to try and get her hair done as much as possible.  I put the ipad down on the ground and let her watch whatever she wanted for all of the 2 hours, detangling spray, and ton of conditioner it took me to untangle her hair.  We had to make little cuts, but all in all the hair was intact!  
We noticed she had come down with a pretty nasty rash on her back.  It was pretty gnarly, it was very red and inflamed.  It didn’t seem to bother her at all, and we knew we had to go back to Dr. Paley’s in 2 days so we would ask about it then.  
Hair combed- back rash!
It was my parents last night here, so they spent as much time with us as possible.  When it was nap time, my parents went out and ran our errands for us.  My dad bought her a small Christmas tree, since we weren’t sure how long it would be before we could go home.  
excited to eat oatmeal.  she couldn't sit with her spica cast so she had to eat sitting on one of our laps.
We were all so happy to be out of the hospital!

Monday, January 28, 2013

Last few hospital nights, and now hotel home!

Pin It  The next few days in the hospital were a cake walk compared to the past few days.    Rory did really well with everything, and each day she would get more color in her face, start talking more, and get a little more “Rory” back into her system.  

We continued her breathing treatments, she did those every 4 hours.  We also still had issues with the diapering and accidents.  The cast smelled like pee already.  We informed the nurses each time and finally they agreed that because she was doing so well eating and drinking that she could get off of her fluids.  That helped out immensely!!!!  

 Since she was now off her fluids and eating and drinking great, the only thing we had keeping us in the hospital was her drain vacs.  The doctors informed us that we could leave the next day if her drain vacs were below certain levels.  We were crossing our fingers and praying like no other for low levels so we could go back to our hotel and get out of the hospital.

Although we were desperate to get out of the hospital, a part of me was still horrified to have Rory out of the hospital.  I wasn’t sure what to do with her in that huge cast.  It was hard enough to play with her in the hotel room with the tilted bed, but now we would be back at the unfamiliar hotel with her.  The hospital also had the added comfort of having a doctor there at any hour of the day.  I had to keep in mind that our hotel was only 2 miles away from the hospital, and that I could do this.  
wound vac only!!!  So excited to get all the tubes off!

The next morning, we had low levels in the wound vac- we were ready to go to hotel home!

in her "Grinch" shirt, ready to go!
 We got her ready to leave, she picked out her “Grinch” shirt that she wanted to wear.  Jon got her car seat ready; we thought that we would have to use some “harness straps” instead of the car seat; but luckily we brought our big car seat from home and were able to recline it to where it was almost laying down.  We added some towels in the seat part because her cast wouldn’t bend and we strapped her in.  

got her in the car seat- ready to strap her in!

It was the scariest 2 mile car ride of my life.  
The best part of going to hotel home was that my parents met us there.  I had been calling, texting, and skyping them several times a day informing them of how she was doing and knew they were extremely concerned about her.  I tried to let them know she wasn’t the normal “Rory” they are used to seeing and that she is still very out of it, but when Rory saw them she was SO excited and it perked her up a bit.  

We all had some dinner and socialized and then had an early bedtime, because we weren’t sure how things would go in the night time.  
We were so happy to be at hotel home!

Friday, January 25, 2013

Photo Friday!

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Thursday, January 24, 2013

A better hospital night!

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Each day Rory was getting better and better.  We could tell by just by the look in her eyes.  Last night we had issues with diapering.  They removed her catheter yesterday, which we were quite excited about, but we were not professionals at diapering with a spica cast.  
I got to hold her again!
We used 2 different sizes of diapers, we used a small diaper (we used a size 3 at first but then got a size 5 when she started losing weight and she had more room in her cast) and put that inside of her cast.  We then used a size 6 for the outside of the cast.  Although it seems like it would secure all that enters the diaper, it doesn’t!
With her on plenty of IV fluids and keeping down all of her fluids I was awoken multiple times in the night needing to change diapers and bedding.  We learned quickly to just check on the diaper every few hours.  We informed the nurses and they said they would inform the doctors with hopes to lower her IV fluids.  
Snuggling with Dada
Even though we were a day behind St. Nick’s Day (which my family always celebrates), we decided to celebrate it today.  It wasn’t so much the “celebrating” fact, it was the fact that we wanted to do anything and everything we could to make Rory happy and smile.  
Jon went out and came back with a bunch of treats.  He had a “Happy Birthday” balloon from Elmo, the sesame street characters also got her a card, and me and Jon wore goofy headbands and Christmas shirts with Rory’s favorite Characters (the Grinch and Oscar the Grouch) on it just to make her smile.  NEver in my wildest dreams did I think I’d be walking around in an Oscar the Grouch shirt, let alone with a big Christmas Tree headband; but once I saw the smile on her face, I didn’t take the shirt off until late december when my belly wouldn’t fit in it again.   She still didn’t have her normal “Rory” smile, but I was quite happy with a smirk!
out looking at the Christmas Trees
Today we got to take her out of her hospital room, so we naturally went to all of the Christmas trees we could find in the hospital.  We bought a wagon so she could recline in it.  We were so excited just to be out of that room!  We got going on our wagon journey and I asked her where she wanted to go, she replied, “home.”  :(  
Since we had been in the hospital, Jon and I were the ones begging Rory to eat and always reminding her to drink.  I was shocked today when she said that she wanted to eat a cupcake.  Jon and I were in search for cupcakes!  We ended up getting a piece of cake from the cafeteria and she devoured it!  We then got as many blueberry, banana, and chocolate chip muffins possible for her.
Muffin and Cupcake Lover!
I’ll take soiled sheets and casts any day, my girl was eating and smiling.  Things were looking up for our family!

Wednesday, January 23, 2013

Worst Hospital Night Yet!

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The second night in the hospital was the hardest night we had.  During this time, Rory would wake up in the middle of the night, which was not uncommon, but instead of having the small jerks that would wake her up (which is normal with the epidural) she started having full body convulsions.  It was the scariest thing I have ever seen. They were from head to feet complete uncontrollable shaking.  She would wake up horrified and completely scared, a look that I hope I never see from her again.  She could hardly speak but would say, “Mama make Rory stop.” 
I was so scared,  I just began waking up yelling at Jon, “Somethings is not right, call the nurse, something is wrong!!!”  Thank the lord my husband was able to be with us because I would have lost my mind.   They full body convulsions didn't last very long but they were long enough to turn me to stone and to petrify me.   
We immediately called the nurse, but by the time she came into the room the convulsions had stopped.    I told the nurse what was going on and she said the spasms were pretty common with the epidural.  My mother instincts kicked in right away and immediately got all up in arms letting her know that these were not the small jerks that she has been having since the surgery.  This was something completely different and completely horrifying to me.
We paged the nurses every time they happened, and luckily they didn’t happen too often, but the nurses informed the doctors the next day.   For the rest of the night I slept with one hand over her head and kind of my body on top of hers because when she did try to sleep, which she was fighting because she was afraid of what would happen, the convulsions or any kind of jerking would wake her up.  It was the scariest night of my life.    
breathing treatments with Dada
The next day we took Rory off epidural. The full body convulsions ended.  She still had the small jerks every now and then, but nothing as bad as the full body convulsions.  We don’t know what single thing it was that caused it, but think it was just a mixture of all the different pain medicine, IVs, terror, and everything else that was going into her little body. 
        There were people coming in the room at all times of the day and night.  Anytime someone entered the room Rory would immediately start crying and say, “no hurt Roro,” and grab on to me with a death grip.  She still had to do her breathing treatments, but after a large vomit that night released a lot of excess mucus and other gunk in her lungs.
eating and drinking so well today!  And in a Diaper!

That is another look that haunts me, seeing those eyes look up at me so scared asking me to make it stop.  How do you explain all of this to a 2 year old.  I just had to look her in the eye and let her know that I was with her and not going to leave.  It was hard to remain as calm as possible, but I knew if I got all freaked out, then she would get even more freaked out herself.
We knew it was a good sign when she woke up and she wanted to eat some grapes.  It was the first time that she was actually able to eat something and keep it in her stomach.  We also knew it was going to be a good day because we were able to have tubes removed from her.  We got the epidural removed, and we got to remove her catheter.  We now got to experience diapering in the spica cast, which I will discuss more tomorrow.  
Words can't describe holding her again!
Today was extremely special for me because I got to hold her for the first time since the morning before her surgery.   It felt like an eternity since I was able to hold my girl in my arms.  She still wasn’t talking and was very much and was not my “Rory” but when I asked if I could hold her she said yes.  It was very awkward for me to hold her, her spica cast weighed more than I thought it would and I was very afraid of moving a tube.  Her hair was matted in the back in one big dreadlock from all the sweating and vomiting that had happened.  However, with Jon’s and a few nurses help, I got to hold her for a while.
The spica was made so that she couldn’t be straight up adn down so we were sitting at a very odd angle where she was reclining on me.  I had tears in my eyes the whole time and was so happy to be close to her.  It was still so surreal holding her.  She wasn’t acting like Rory, she didn’t look like Rory, and it was almost like it was just a “Rory shell” sitting on my lap.  It didn’t matter, as long as she was in my arms I was happy.  
We knew the worst was behind us!  

Tuesday, January 22, 2013

First Night in the Hospital after Surgery

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The following nights in the hospital were difficult.  Being in a hospital is hard enough when people come in your room every few hours to do vitals, but on top of that we had machines beeping, blood work done, and medicine changes frequently.  It was tough to get any sleep whatsoever.  

I was sleeping in the bed with Rory and had to sleep on my side, I was afraid of hurting her leg, even though she was in her non-removable spica cast.  Because of the medicine she was on she would wake up with her arms jerking and it would wake her up.  I managed to find a way for me to sleep with one arm behind her head and my other arm across her body holding her far arm.  
Hardest day of my life

She did pretty well the first night, considering all she went through that day.  We knew she was hurting when she would wake up and say she was “stuck” in her cast, or would start screaming “get me out.”  She was so confused and scared that she was literally freaking out.  We would call the nurse and get her a new dose of pain meds and it would help calm her down.  
It still hard for me to look at Rory the next day.  She had bruises and holes all over her feet and hands from trying to put catheters in her during the surgery yesterday.   Her swelling had also intensified over the next day.  Almost every part of her was swollen; eyes, wrists, hands, feet.  Her eyes were what made it the hardest for me to look at her.   Id look in her eyes in hopes to see a sparkle of the Rory cheer that was so present a few days ago, but I just saw a blank stare and confusion.  It was so strange seeing my baby girl, but she wasn’t herself at all, it was as if she was in a “Rory Shell” of some sort, that I desperately wanted her out of!

I still can't look at this picture without crying

bruises everywhere

Rory had a tube in her throat for so Long that it hurt her to talk, so she didn't say much. She resorted back to signing as she did before she could talk.  It didn't help her throat that she would throw up almost anything she ate for a while.  We would resort to small things like Popsicles and applesauce and those would all come right back up. 

She grew high temperatures of almost 102. She would be sweating when Jon and I were snuggled in blankets. 
She wasn't eating much of anything because she would throw everything back up. What helped was having full access to her iPhone and iPad.  She would wake up screaming and ask to watch Rudolph on the iPad and even though it was 2am I'd let her do it just so she would be happy, because she had been through so much.
Throwing up is not easy with any child, but it is exceptionally hard with a child who has just undergone a long surgical procedure and is in a spica cast with tubes everywhere.  She couldn’t move at all so when I noticed the barf I would have to pick her up being very ginger not to remove her epidural or drain vacs, and other tubes and would roll her over on myself or whatever room we had available.  There were several times where she would start vomiting all over herself before we even noticed, even though I was in the bed with her the whole time.
The vomiting didn’t help with her sore throat at all, it just made it worse.  When ever she would sleep it sounded like she had a bad cold and was extremely congested.  During the day a nurse came in and listened to her breathing.  We had a doctor prescribe her breathing treatments every four hours.  She would have to put on a little mask and inhale some medicine for 7 minuets.  I couldn’t be around her when she had these because of the chemicals she was breathing would be harmful to my baby to be.  It was just another thing that terrified her.  
The doctors decided she needed to get a new cast because hers was a little too big on top of her tummy. We noticed t was larger when she would yell to "get me out" she would stick her hand inside and attempt to pull it off, and almost rip out her drain vacs at the same time. 
New cast
They came in the hospital room with the huge cast saw and other equipment.  They propped her up on a pedestal and turned on the saw. I was t sure if I'd be able to handle it, so I took that opportunity to call my mom and Jon stayed with her. I ran into the room when I heard the saw shut off. He said she did great- no fussing or anything.  He saw her scar and warned me that it was big.
  We spent most of the day trying to do anything and everything to get a reaction out of her.  It was the hardest day ever...And the night ahead of us was going to be worse....

*Sorry for the typos, I usually try to go back and edit my posts, but these are tough for me, I cry every time I see these pictures! Im leaving them as is!  

Monday, January 21, 2013

Happy MLK day!

Pin It Hope everyone is having a good MLK day! Posts will resume tomorrow!

Thursday, January 17, 2013

Current Update!

Pin It We took Rory to get xrays done the other day.  Rory, naturally, was horrified after all her doctor experiences, but we managed to get them done.  I hated not being able to be in the room with Rory and Daddy since I'm 7.5 months pregnant, but ran in as soon as she snapped the last picture.

We have sent the pictures to Florida and now we wait to hear from her doctor.  We are hoping that he will give her the "ok" to start physical therapy again and even put some weight on it.  She is already asking to try and walk...she's the strongest girl I know!

Keep your fingers crossed for us!

Wednesday, January 16, 2013

Day 3: First Surgery

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The next few days were completely awful.  I still tear up when I see pictures of Rory and think about things that happened over the past few days.....So, for my sanity I’m going to do a condensed version....

We woke up bright and early on that day.  We brought Rory to the Doctors office in her pajamas.  We brought her phone and the ipad because we wanted to keep her as busy as possible so she didn’t have to ask for anything to eat or drink. 

Rory loved the "yes" on her leg
We laid in the hospital bed together, Rory put on her hospital gown, and we waited.  We waited for the nurses to ask all the questions, do all the vitals, then we had to get our PA to mark Rory’s leg (which she loved because he wrote “YES” on her leg), and then for anesthesia to come and give us a little “kiddie cocktail” to get her calm before she had to go back and get sedated.  
The waiting was awful....I was upset because I wanted to be with her when they took her back to be anesthetized, but because of the gas they were using (and my being pregnant) I had to take a back seat and have daddy go in. 

Waiting with Daddy to go back to anesthesia
There aren’t words to describe the feeling you get when they take your child back....Its a mixture of nausea, rage, and sadness all in one.  We said our “Love You’s” and then she was gone.  it was 9am.  I just stood there watching them wheel her away and then I lost it.  
Luckily there was another mom in the pre-op room that came over and put her arm around me until Jon came back.   When Jon came back we just looked at each other and both kind of lost it....then the waiting game began.  

We all had hospital bracelets- even Marilyn!  
We are lucky that Dr. Paley has a girl on her staff whose job is to text or tell families in the waiting room how their child is doing in surgery.  Every time I saw the door open I would jump a little in my seat hoping she would tell me my girl was doing great, the surgery was complete, and  she was waiting to see me. 
The waiting room had several other families in it, we were so fortunate to have them there to all talk about our stories and share our experiences with each other.  The other families you meet who have children with the same or similar condition become instant friends.  There is something that automatically bonds you together, and we were lucky to meet some great people in the waiting room that day.  
I had packed a lot of stuff for us to do while we waited, because we knew it was going to be a long procedure, I just didn’t think I wouldn’t see my girl for almost 11 hours.  I packed some Christmas things, my laptop, numerous forms to fill out and books to occupy my time.  I was so nervous; just sitting and waiting, which I normally never do, so I wasn’t very hungry and didn’t eat as much as I should.
We would get updates that Rory was doing well, but one by one the other families left.  They got to go back and see their kids and each time I found myself upset that it wasn’t me they were calling back.  Around 1pm, we got an update that they were finished with her hip procedure and were going to start on her knee.  
More waiting....
Around 5:30 Dr. Paley came out, he let us know that the surgery was completed and Rory was doing fine.  I immediately asked when I could see her, but they still had to close up her wound and get her in recovery.  It would still be a few more hours until we were able to see her.  
Around 6:30 we were moved from one waiting room to another.  The nurse told us that Rory was doing well and we should see her within the hour.  She they would have to bring her up from the operating room to the recovery room.  So, naturally, I waited in the halls in hopes of seeing them wheel her from one room to another.  
Around 7pm I got to see her as they wheeled her to recovery.  She was sleeping and I could hardly recognize her.  I couldn’t wait to see her, but at the same time I was pretty scared to see her up close.  They said I would have to wait to see her still for around 15-20 min until she starts to wake up.      
Finally they called me in to the recovery room.  Only one parent could go in at a time and Jon was nice enough to let me see her first.  I immediately heard her little voice say “Mama,” but it didn’t sound like Rory’s voice at all.  She had a breathing tube down her lungs for 9 and a half hours and it was a raspy voice that still haunts me in my sleep at night.  She had tubes all over her, everywhere there was a tube.  I wanted to hop on the bed with her, but was afraid of kinking a tube.  She was scared and confused and was crying.  The nurse gave her some more pain meds and she went back down into a sleep.
I couldn’t believe this was my girl.  Her whole body was completely swollen, her eyes could hardly open.  The sound of her voice and cries were devastating to me.  She couldn’t move much and did not look like my daughter.  She could hardly move too, she had her spica cast on and it went from below her  breast bones to her foot on her right side and her knee on her left side.  
As she was falling back into sleep, I felt myself getting extremely light headed.  I think it was a combination of being haunched over a hospital bed, not eating much that day (which I should have eaten anyway since Im pregnant), and just seeing my daughter in the state she was in, but I knew I was going to faint.  I ran back out to the waiting room to see Jon
Jon started waving papers at my face because I clearly looked like death.  I told him to go with Rory and bring his phone and I laid there on the floor.  It was completely surreal, I just laid there and cried.  When I felt better I went back in the recovery room; one person only is what they say, but I hadn’t seen my daughter in almost 11 hours and I was going to be with her no matter what.
She began waking up and we went to our room.  She wanted to drink juice so bad, but the nurses wouldn’t let her because after surgery kids have a tendency to vomit things back up, but she could eat popsicles.  When she got to her room, she ate almost four popsicles.  She couldn't eat them fast enough.  We finally gave her some juice to see if she could keep it down, but we could only give her little sips, which upset her; she wanted to chug as much juice as fast as she could.  
I managed to hop into the bed with her, I couldn't be close enough to my girl.  Jon and I ate, and then we tried to get any kind of sleep we could.  I slept in Rory’s hospital bed and Jon slept on the fold out chair.  
It was so hard to see Rory that night I didn’t take any pictures.  Im not sure if it was because I didn’t want to remember her like this or because I just didn’t want think to take any.  It was the longest day of my life.  I couldn’t believe that she was in surgery for 9 and a half hours.  I didn’t see her for almost 11 hours that day, and it was too much for this stay at home mom to handle!
We braced ourself for our first night in the hospital.  

Tuesday, January 15, 2013

Day 2: pre-op!

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Today was our pre-op day.  We drove up to the hospital: Rory already knew what was going on, she turned to me and said, “No doctors, mama.”   I guess she remembered from our last few trips out there!  

We arrived at pre-op and everything went well, until we had to give blood.  They couldn't get a vein from Rory.  They tried everywhere, arm, hand, leg, and finally found one on her foot!  It was just hard hearing Rory fuss and yell and we just had to hold her down and have this done to her.  We brought my old iphone and I had placed all of Rory’s movies, songs, and apps on her phone for her to play with, so we watched Rudolph and singing the songs helped!  It is just hard to explain “taking blood” to a 2 year old!

poor bug had to have it taken from a vein in her foot!

there are her x-rays in the background

Pre-op done!  She then had some x-rays done, which I hated because I couldn’t go into the x-ray room with her because of the baby, so Daddy went in with her.   Everything looked great, so we got the “ok” for surgery.   Her time was 8:30am, which means we had to get to the hospital at 6:30am.  I was very nervous about her not being able to eat or drink for a few hours.  I didn’t know that they couldn't even drink water!   Rory wakes up thinking about drinking milk, so I was a little nervous!

For the rest of the day we decided to go to the “Downtown” part of West Palm Beach and walk around the water.  We stumbled around something better, a big fountain!  We were all running through the fountains and Rory must have played in the fountain for an hour!  

We just walked around and tried to have Rory enjoy her last day of running around playing as much as possible because we knew tomorrow would be difficult. 

Monday, January 14, 2013

Florida saga: Day 1

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Many of you know that our past month and a half has been thrown upside down with Rory having surgery.  There is so much to post, I know it is going to take days for me to talk about it all, so I am just going to take it a few days at a time.  

Her Super Hip and possibly Super knee surgery was scheduled for December 4th.  Because her last two surgeries were cancelled because Rory got sick, we had been in seclusion since Halloween.  No company for Thanksgiving, no play dates, no grocery store, nothing but mommy and Rory in the house and outside during the day and daddy at night.  It was SO hard, but we couldn’t afford to go down to Florida agian and have to come back because of an illness.

I knew she was healthy as a horse, adn had no concerns when her primary doctor went to check her to approve her for surgery.  Sure enough. she was fine!  My only concern was the flight down there.  I was very nervous about the flight, because Rory has gotten sick from airplanes before.  So we were the people on the plane with masks on.  

decorating our masks with stickers!
I had Rory wear the mask in teh house before the surgery to get used to it, and she liked it!  She thought it was a mask like her favorite TV character “Whyatt” from Super Why! on Pbs.  However in the airplane, the mask was awful, Mommy and Daddy wore them but Rory refused.  

I tried....

craziness in Tampa airport

Rory loves airports, she runs around and is one crazy girl!  This trip was no different!  We finally got to the hotel and the craziness began, Rory was jumping all over the bed, rolling off the bed and doing anything she could to be wild.  

It was a good day for her: airplane, airport running, and a hotel room with a TV that had stations.  Tomorrow was her pre-op appointment and she needed a good night sleep.   She knew we were in Florida to see Dr. Paley but didn’t have any idea of what was to come....neither did I!

jumping and falling all over the bed

Friday, January 11, 2013

We are HOME!!!!

Pin It Thank you so much to all that have been asking about Rory!  We have had quite the long and lengthy December/ January with a total of 4 surgeries....
BUT...we are home now and looking forward to blogging all about our ordeals!
As of now, she is doing so well and is very happy to be home!

Tuesday, January 8, 2013

Homemade Jelly fish

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Rory loves sea creatures.  We live by the beach and she loves to go and see what creatures the waves can bring ashore.  We have seem shells, fish, crabs, and our most recent discovery, was a jelly fish.  Since Jelly fish are very similar to Rory’s favorite sea creature, the octopus, she has become quite curious about what they are and what their “legs” do.  

This week we decided to make our own Jelly fish.

Materials needed:
  • plastic or paper bowl
  • bubble wrap
  • tape
  • pen

These are so easy to make!  We lucked out with having some left over plastic bowls around the house from when Rory had some friends over.  We always have bubble wrap around because Rory’s aunts always send her presents.

To make these, take the bubble wrap and cut it into long strips.  Keep the main bubbles intact, its fine to cut the bubbles around it.  Take the plastic bowl and sit it upright like you are going to put some cereal inside.  Place the long strips of bubble wrap or the “tentacles” inside the bowl and tape them.  Depending on how long you want your tentacles, you can either tape them to the sides of the bowl or the middle of the bowl.  

Once all your tentacles are in place you can now decorate!  Rory enjoyed coloring them with markers and putting stickers on them.  We also drew smily faces on them.  

We now have Jelly fish all over in our house.

Monday, January 7, 2013


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Rory and I have been talking about things that are beautiful lately.  She is so sweet and sometimes when I get dressed she will come up to me and say, “Mommy looks beautiful,” when in reality I look like Linda Blair from the Exorcist.   I will ask her, “Rory, what else is beautiful,” and she will say, “Roro is beautiful!”

She will also talk about other things that she thinks are beautiful; such as her baby Marilyn and Emmy her cat.  I love when she will say things are randomly beautiful, like when we are in the grocery store and she will say that an apple is beautiful or Mommy's car is beautiful!  

I love that she thinks she is beautiful.  Self Esteem is so important, and I believe it is so important for them to learn that they are beautiful and special early on in their lives.  I hope Rory grows up and will continue to think that she is beautiful.  I think that if we continue to tell her every day how beautiful and wonderful she is she will grow up with positive self esteem.  

Thursday, January 3, 2013

Project with old shoes!

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Rory has Congenital Femoral Deficiency.  That's a fact, and there is absolutely nothing I can ever do to change that.   I know that she is going to struggle with her leg for such a long time, and I know I am going to struggle with it too.  Even though Rory has Congenital Femoral Deficiency, it does not define who she is.  Rory is a beautiful, spunky, child who is so loving and is so contagiously fun!  When someone talks about Rory, I want them to think of her as “Rory the fun girl,” instead of “Rory the girl with the small leg and big shoe.”

When things get tough, like they currently are with her surgery rapidly approaching, it can be very easy to want to throw myself a one-man pity party.  I find myself upset at people who don't use their legs to their complete potential, people that chose to be lazy instead of walking or running, because although Rory tries to walk and run, she often falls and can sometimes get pretty beat up.  She will not be able to run like other kids until her legs are all completely fixed, probably not until she is 16 or so.  Although I have been dealing with how to handle this for almost two years,  there are still times that get hard.  I know that Rory feeds off of me, she feeds off my energy and the vibes I give out, so I need to lead by example.   

Her ever growing shoe is part of our life, and I want her to always be proud them and of who she is.  I do not want her to throw herself a pity party because of her leg.   I want her to know what a strong girl she is for walking and running with her little leg every day.     I want her to see her shoe as a strength rather than a weakness, which has inspired this weeks project. 

We are celebrating our differences by making shoe vases!

Materials Needed:
an old pair of shoes
styrofoam board
scissors (or exacto knife to cut the styrofoam)
artificial (or real) flowers
scrap fabric
pen or other utensil used to poke through the fabric into the styrofoam

This project will work with any shoes (I bet it would look super cute with baby shoes), any shoes that you can seem to throw away.  I had some styrofoam board that many use for flower arranging (we like to dry cake pops on them).  I also had some scraps of fabric lying around that I used to cover up the styrofoam board.  

Measure the inside of the shoe as best as possible.  Cut out the styrofoam to fit inside the shoe.  Wrap the scrap fabric around the styrofoam and place it in the shoe.  Think about how you would like the flowers to be arranged and poke holes in the styrofoam.  Place the flowers in the styrofoam.  I let Rory put the flowers in the shoes.  We used this opportunity for counting the petals on the flowers, the leaves on the flowers, and all the flowers on the shoe.

Rory really liked seeing her old shoes become centerpieces on her bookshelf!  I want Rory to look at her old shoes with the flowers and to see beauty.  I want her to know that we are celebrating what other people think could be a weakness, or deformity.  She has a very special little leg!

I encourage all moms to find what makes their child special, the weakness that others may find in your child, and let them know that it is something that makes them special.  I find that many times, a parent's attitude is reflected in the children’s attitude.  If Rory sees me being positive and optimistic about her shoes I think she will be positive too. 

These flower shoes are just another way of me showing Rory how much we love her little leg!

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