Thursday, February 28, 2013

Felt Matchers!

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The other day while I was cleaning out our closet I found tons of old poker chips laying around.  I couldn’t help but look at these colorful poker chips that we no longer use, and think that I couldn’t find a way to make these into a fun activity with Rory.  I sat and thought for a while and finally figured it out.  We were going to make “matcher” cards!

To make these, I didn’t have to go to the store or anything, we had all the supplies here at our house!  

Materials Needed:
felt
marker
poker chips

This is so simple and has actually captured Rorys attention for quite a while. 

I grabbed some old felt that I had left over from Christmas and drew a line down the middle dividing the felt square in half.  One of the halves is for me and my poker chips and the other half is for Rory to mimic my design.  

I thought it would be beneficial to place the poker chips on my side of the felt square and outline them as a model for Rory.  I placed several poker chips on top of the felt square and traced around them with the permanent marker.  You don’t need to do this, but I wanted to give Rory a reference of what it will look like before I add the poker chips.  

Thats it!  That is all I did for this project.  Now its time to play and learn. 

There are so many ways to play with, I started with the felt and we counted the circles on them.  Then I placed my poker chips on the felt square, making sure to call out each color I was using. 

Anything to keep her interest works for me!

Wednesday, February 27, 2013

Christmas (kind of) in Florida!

Pin It Christmas was a normal Florida day for us.  Rory woke up extremely fussy.  She was still having bad nightmares in the middle of the night from her surgery and hospital stay, and Christmas night didn't cut my beautiful daughter any slack.  She woke up all fussy and the fact that there were presents in the hotel meant nothing to her.
We finally got her to the "tree" and presents.  It was even hard to open them because she still couldn't sit upright which limited how she could play with things.  She opened her "presents" (I don't even like calling them presents because it is not what Santa wanted to give to her.)

eating a cheese stick instead of wanting to open her presents
playing with her Christmas playdough
She wasn't even happy opening her presents.  She tried to play with the dolls, but wasn't too into them because they weren't her "Marilyn," she was more focused on wanting to watch the ipad and getting a waffle from the hotel breakfast than opening present.  Jon and I didn't have any presents for each other at all, it didn't even feel like Christmas.
slide time
We decided we had to get out of the hotel as soon as possible.  Nothing was open on Christmas so we decided to google a playground near by.  I didn't want to go to the playground because of all the anxiety I had when we attempted to go to the playground at the Quantum house with Santa, but I knew Rory would like it.  Like I mentioned in previous posts, there wasn't a whole lot we could do with Rory at the playground.  She was pretty restricted with her spica cast and wound vac, but she liked the swings, slides, and hanging with daddy.  She liked the playground, but still had her tantrums for her ipad and wanting to go home.
After the park we did notice a tourist store that was open on Christmas day, so we went in.  Rory liked trying on all the sunglasses and I looked for another pair of shorts since I only had a couple pairs.  Then we went back to hotel home.
loved the sunglasses
Rory had macaroni and cheese and we munched on salad with morningstar farm burgers for dinner.  It was not the Christmas my daughter deserved, so we decided we would give her a real Christmas when we got back home.
eating mac and cheese
It was a hard day for us, we just wanted things to get easier for Rory.

Tuesday, February 26, 2013

Christmas Eve in Florida with a spica cast and wound vac

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We already had a traumatic Christmas Eve with Rory’s first wound vac change.  It was pretty much a horrific day for all of us.  The rest of the day was pretty hard, Rory was extremely fussy and it was hard for Jon and myself too.  There is nothing worse than having your little girl scream and cry during the wound vac changes and then go back to the hotel and be extremely fussy.  

Although it was Christmas Eve, it didn’t feel like Christmas at all.  We tried to do fun things with her that afternoon.  We went back to “hotel home” and acted as crazy as we could to get her to laugh or smile or do anything.  Nothing was working.   Jon and I felt bad enough because the only presents we had for her were presents we had from the hospital.  We wanted to go out and buy her everything we could, but we first spent a ton of money just being down there, and second we didn’t want to have to haul everything back since we only packed for a few days.  We got her a few little things, but that was it.  

Even though we had a few presents, I wasn’t sure if it would help, Rory was unhappy, sad, and miserable.  She wanted her wound vac out, she wanted her cast off, and she wanted us all to go home.   She wanted to see her pets, her own bed, and be far away from the doctors.  

Finally around 7pm at night my crafty side came out and I grabbed the left over wrapping paper we had and began cutting.  I was desperate to do something that felt like Christmas.  I would have killed for a Christmas Cookie and a real Christmas tree, since Christmas is my most favorite time of year.  I had to improvise, so I then went out to teh lobby and grabbed brochures and magazines from the kiosk and began cutting those up as well.  I finally had the makings of a Christmas Tree.  

I grabbed my fussy child and had her watch me tape the sad christmas tree up to the wall.  I showed her the ornaments of stickers, misc animals cut out from brochures and the wrapping paper scraps and she actually loved it.  

Jon and I took turns holding her and having her show us where she would like to put on the ornaments.  We had to take turns because the cast was so heavy and I ended up needing a break after a while!  It made her smile and was the best 15 min we had this trip.  

We then left out some treats for santa and a note.  The treats were muffins from breakfast and fig newtons.  

We were hoping her good mood would last for Christmas Morning....

Monday, February 25, 2013

Christmas Eve Wound Vac Change #1 *Wound pics*

Pin It Christmas was in a few days- we tried to find things to do in Florida to kill time. Her first wound vac change was on Christmas Eve. We are so lucky that someone on Dr.Paley's staff came in and helped us with it. I had no idea what to expect with the wound vac changes. I had talked to my grandma who had one on her knee and she told me they didn't hurt at all, but that could be uncomfortable.  Since all three of Rory's surgeries she had become extremely sensitive to any forms of pain.  We were still doing physical therapy with her three times a day and I dreaded each time because of the tears and screams that would accompany it.  


doing stretches on her good leg- she was so proud of herself!

I knew the wound vac changes would be uncomfortable, but honestly didn't know what to expect.  I wasn't sure just how painful they would be and how Rory would react, but I knew it wouldn't be easy.

We got to the hospital and Rory immediately started screaming and crying in the car.  It was awful.  I felt terrible because there is no way to tell a 2 year old that this is something that has to be done, and especially on Christmas Eve!

We took off her cast, which immediately caused concern for Rory.  She normally associated her physical therapy with getting her cast removed.  We then had to get her into the proper position so that the doctor could switch out all of her wound vac gear.  To do this we had to put a towel between her legs and tilt her up a bit to get the right angle.

She was screaming frantically at this point.  I had the ipad and was laying in bed with her while she was screaming and crying, and just had to helplessly hold her while Jon and the doctors just got everything ready!


wound vac before the change
When she was in proper position came the worst part, removing the "tape."  Although this probably felt like a big bandaid coming off, Rory was super sensitive to any form of pain and after it was removed I asked if she could just have a minuet because she was so worked up (as she gets) that I was pretty sure she was going to vomit (as she does when she is completely worked up.)

I was hoping at that point he would go and get Dr. Paley and they would say the wound looked great and we could close her incision up that day, but no such luck.  

We were watching "The Lorax," which normally helps, but nothing could calm her down.  At this point I was in tears too.  The doctors asked us if she was on any pain meds, and she still refused to take any after her surgeries, we even tried to give her Tylenol, but she just refused all meds.  


her incision during wound vac change
She was completely hysterical, but we ended up getting it all changed and then we could go back to hotel home.  There wasn't much we could do with Rory, she was really upset and so we just wanted her to be happy, so we went home and tried to have a good Christmas Eve.  

Friday, February 22, 2013

Photo Friday!

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Making cookies for daddy!

Thursday, February 21, 2013

Visiting Santa in Florida!

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St. Marys hospital has a place called “Quantum House” where patients and their families can stay during their time at St. Mary’s; like a Ronald McDonald house.  We were very lucky to hear about Santa Coming the day following Rory’s surgery.   Since we were staying in Florida for a few weeks, we needed things to do!  Since Rory is in love with Christmas, we were very  excited to take Rory!

going to see santa
Rory was still in her spica, but luckily if we put a pillow in our little umbrella stroller and placed her in at an angle we could take her around and she fit wonderfully.  It was hard getting used to taking Gurgles (her wound vac) everywhere with us.  It was like having a short leash on your child, you couldn’t go to far because the wound vac was stuck in her leg.  

She was so excited to see Santa.  We were just happy that Rory would smile when we told her we would go see him.  I can't get tired of seeing her smile!

A group called the “corvette club” put on the event, and we were so grateful to them for what they did for Rory!  There was a Santa, Mrs. Claus, toys for the kids, and snacks.  
Rory was a bit nervous when she actually got to sit on Santa’s lap.  She loved the presents she was given, and Jon and I were too since we didn't think we were going to be having Christmas in Florida.  

cupcakes!

Although there really aren’t any perks to being down in Florida when you child has had surgery, meeting other families who are going through similar things you are helps.  We got some treats and mingled.  Rory’s favorite was the cupcakes.  My favorite was watching her eat them. 

The quantum house also had a playground out back.  It was in the 80’s in Florida so we all went to see what we could do with Rory in her cast and with her wound vac.  It was so sweet to see her perk up.  Her favorite was that she got to “hang” again.  

playground fun!



It was so good to do “normal” things again.    

Wednesday, February 20, 2013

Surgery 3; Dec. 21, 2012

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We had a hard night last night.  I ended up getting pretty fussy with one of Rory’s nurses.  For the most part we had great success with the nursing staff, however the last few nights we had a girl who had good intentions, she thought she knew what she was doing, but ended up not having a clue.  

Last night we had some issues with Rorys catheter.  She was saying that it was kinked and was trying to put it back in, but for some reason couldn’t get it.  Rory was up screaming, literally screaming, for about 30 minuets while this girl was trying to fix the big needle in her vein.  I was so mad, I was furious.   I wanted her to either do the normal 1 minuet fix or to find another nurse who could, because it was getting ridiculous.  And to think that she would have surgery in a few more hours.
Almost Surgery time
This time it was easier, they came to get Rory for her surgery, so she got to sleep as much as she possibly could.  We of course brought the ipad for the waiting; however this time there wasn't much waiting.  We soon had all the vitals taken and met with the anesthesiologist.  She knew exactly where we were down in the surgery waiting area, and immediately began with the, "Please no, mama!"  It was heartbreaking.  The surgery today would be pretty easy; they were going to take out the wound vac, clean out her leg again, and he was probably going to make a few cuts here and there to help open up the wound.  Hopefully he would suture her up and we would be on a plane back home.   A short procedure, which was good, but I really hate when they have to put her under anesthesia.  

They came to get her right on time and I immediately got that sick feeling and once she went back to the room with Jon I started crying again.  Because she she had the catheter in, she could get the medicine directly into her veins.  I didn't know if this would make much difference or not, but when it was time to go back and put on her mask to be anesthetized, Jon said she was laughing instead of crying!  It helped me feel a little bit better.
Out of surgery!
Then we waited.....not nearly as long, only a few hours, but still waiting.

Dr. Paley came out and informed us that her wound looked good, and he probably could have sutured her up, but she still had the wound vac on and he would like to keep it on for a few weeks just to be safe.  Although this killed me inside, I knew it was probably our best bet because we didn't want to go all the way home to have to come back to Florida again.  We set a new surgery date for Jan. 7th and then Jon and had to talk to him about what our options were.  We could go home- however we would once again have to fly and take the chance of Rory getting sick from the airplane (which seems to happen frequently), and although her wound was covered with the wound vac and her spica cast, it was still open, and I was nervous about flying with it.  We would also have to drive an hour for wound vac changes 3 times a week but would have to schedule them soon because everything was getting ready to close for the holidays.   Our other option was to stay in Florida over the holidays, get wound changes done at the hospital (which we were quite familiar with) if there was any problems we would have a doctor right there, someone could help us over the holidays, and hopefully the wound would heal faster and we could leave sooner.

back in the hospital room
I knew I wanted to stay- I was afraid of traveling with her and the open wound.  I know the expenses for a hotel and rental car over the holidays were going to destroy us financially, but what else were we going to do.  So we decided to stay.  

For this surgery, Rory again recovered quickly.  I still heard the "Mama" raspy voice after the procedure and pushed all the nurses out of the way before I hopped into her small surgery bed.  I gave her juice too ;)  We only had to stay in the hospital over night, and then we could leave.  It looked like we were going to spend our Christmas and New Years in "hotel Home" where we came packed for one outpatient surgery.

the shorter surgeries are SO much better recovery wise! Mommy looks pretty rough!

For the next posts, I will blog about our holiday time at hotel home, and just the experiences we had with her spica cast and wound vac changes.  On the bright side, no more surgeries until the new year!


Tuesday, February 19, 2013

Post 2nd surgery- getting ready for surgery #3

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We were able to talk to Dr. Paley.  The surgery went well; Rory was in recovery and we would be able to see her when she started waking up.  He informed us of everything they did during surgery (which was significantly shorter than 9.5 hours!).  He opened the incision more up top and cleaned out her wound, and put in a wound vac.  He wasn’t sure if the stitches he had put in were giving her an allergic reaction, so he decided to put new stitches in the bottom part of her leg since they were starting to look a bit funky as well.  He informed us that he would like to put her back under anesthesia on the 21st for her first wound vac cleaning and depending on how everything looks, he may close up her incision.  

We knew we were not going to be there for a three days.  

I got to see her a few hours later.  I heard her crying for me and took off running.  It is a sound I will never forget; it was the same raspy, helpless voice I heard before that would haunt me at night.  She was scared so I hopped up in the hospital bed.  I think the nurses were upset with me because when you are in recovery from surgery you aren’t able to eat or drink anything but popsicles, because most kids can end up throwing up right after surgery.  Rory didn’t get to eat or drink until 11:30; so I brought her juice, milk, and snacks with me.  When she asked for juice she got it.  She also got popsicles too ;)


The difference between a 9.5 hour surgery and a 3 hour surgery is that Rory recovered quicker and seemed to be herself a lot faster.  She was already eating adn drinking by dinner time and there was no vomiting at all.  It was such a relief to see her recover so quickly.  

drinking juice!
She was pretty confused about her wound vac.  She wasn’t sure what it was and it made funny noises.  She named it “gurgles” because it made a gurgling sound every so often.  
She was recovering so well from this surgery.  She was eating and drinking by the end of the night. We had to stay in the hospital until her next surgery; so we stayed in the hospital the 19th and 20th of december.  I hate how everyone in the hospital tells you to get rest when they wake you up every 3 hours in the middle of the night for blood draws, vitals, and fluids.  

a small view of gurgles!

 We tried to disconnect her from her fluids as much as possible, because with her drinking and eating regularly the fluids just weren't needed.  The fluids along with everything she was consuming made diaper changing in that spica cast a nightmare.  We still had to keep her catheter in because of her surgery the next day, but we were ready for the fluids to go.   

eating great the next morning
We went out of her hospital room as much as we could the next day.  There wasn't a whole lot to do around the hospital, but we found what we could.  There was a children's play room that we went to, and we walked all around the hospital for Christmas trees.  

Now we just had to wait for the next surgery, and then hopefully we could go home!

Monday, February 18, 2013

Surgery #2 for Rory

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We were up again around 6:30 for her 8:30 surgery.  Rory knew as soon as we were in the parking lot what was going on and what was happening.  We went to the back room and broke out the ipad, it calmed her and made her happy.  As for myself, nothing could make me feel any bit of calm.  
Sitting in that Room felt like an eternity.  This time it actually was an eternity- although the surgery was scheduled for 8:30 am, there were issues and we ended up waiting until she went back around 11:30.  Not only was it hard waiting and waiting knowing that they could take her at any minuet, but it was also hard because she was screaming for milk, juice, and applesauce.  I couldn't even get her water.
waiting...

I kept having to change the subject really quick and hope to divert her attention, but it didn't help.  She even got sick of the ipad after a while.  I kept singing songs and breaking out books and my phone, anything to keep her interest.  It is really hard to explain what was going on to her.  I was pretty pissed off by now, although I know it was out of my control and that things just "happen" but everyone that passed by our bed pretty much got a dirty look.  I just wanted someone to tell us when she would go back.  

waiting....

Finally around 11:30 they took her and Jon back (again, I was upset that I couldn't go back because I was pregnant).  That indescribable feeling of sickness, fear, and complete helplessness entered my body.  I went into the bathroom, cried, and waited for Jon to come back.  Then the waiting game began again.
still waiting....
I wasn't really sure what was going to happen to Rory today.  To my belief, Dr. Paley was going to clean out her wound, suture her up, and we would stay a day incase something happened, and then we would be home (at least that is what we packed for).   We knew the surgery would be significantly shorter than her 9 and a half hour super hip and super knee.  

While in the waiting room, I just sat and stared.  Luckily I had the ipad since I didn't pack anything to do this time around.  There was another family there who had a daughter who had a fixater on.   They had to come down like us, on a fluke thing that happened after their surgery.  We were talking about our situations and I said, “Things with us have been so crazy, I can’t wait for things to get back to normal.” She replied, “This is your new normal.”  

She is right, this is our new normal.  I thought about that until Dr. Paley finally came and got us.  It looks like she had finished her second surgery.

Friday, February 15, 2013

Photo Friday!

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Happy Friday Readers!

Thursday, February 14, 2013

Happy Valentine's Day!!!

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Happy Valentine's Day Readers!  Hope you all are having a great day.  We are busy cooking and spreading valentine's day cheer!

Wednesday, February 13, 2013

Back on the Airplane to Florida

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December 18.  That day we went up to Jon’s clinic to put one more Wet to Dry bandage on her leg.   We also wanted to call Dr. Paley and see if this was something we could get taken care of here.  Although I want no other doctor besides Dr. Paley touching her leg, the thought of going down to Florida was sickening.
That morning Rory and I were both in tears.  Jon talked to Dr. Paley (since he speaks medical jargon) and found out that the skin was dying and they were going to need to get her back in for surgery.  I have said that I only want Dr. Paley working on her leg, because other doctors are not only unfamiliar with her condition, but also with the hardware of screws and the metal plate in her leg.  I couldn’t have anyone else work on her.  

We were lucky enough to get into surgery with Dr. Paley the next morning.   We thought it would be a quick outpatient procedure. 
Rory the dentist
Rory was excited to go back on an airplane.  We booked tickets for that afternoon, and would be in Florida by 9pm.  We planned on staying there 3 days, until the 21st, in case something came up, and booked a return flight.  Packing was a lot easier this time- we packed a few outfits, a pair of shoes, an ipad, Rory’s phone, and some books.      
We went back to the airport.  Since she loves “Rudolph the red nosed reindeer” she pretended to he “Hermie” the elf and was a dentist to her dad.  We then played with Rudolph stickers in the airplane to ease any tension.  
flight 1
flight 2
For the last flight, which should have only been an hour or so from Charlotte to West Palm Beach, we boarded the plane.  We sat on the plane.  And then because there was an issue with the plane we had to wait and then get on another plane.  We were delayed and finally got to Florida around 11:30.  
delayed
I was trying to feed her because she couldn’t eat after midnight and she was going into surgery at 8:30am tomorrow.  I just was afraid she would be asking for milk and juice and I couldn't give her any.  
snuggling up together before surgery
To state the obvious....I didn’t sleep at all.

Tuesday, February 12, 2013

More Valentine's Day Cards!

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It is almost Valentine’s day!  Since Rory still can’t walk we have decided to do another hand craft!  Since she is still has to be sponge bathed we didn’t want to use paint or anything that could get all over her body, so we chose to use a stamp pad, and we used just the thumb.


We made heart thumbprint cards!
Materials needed: 
  • construction paper
  • stamp pad- we used white, but you can use any color you want
  • paper for a card
  • scissors
  • pen
  • glue
  • any embellishments you would like

We began making these with some pink construction paper and the white stamp pad.  We started by dipping one thumb in the white ink pad, then pressed it at a slight angle to the left on the pink construction paper.  We then dipped the other thumb in the white ink pad and pressed it at a slight angle to the right, creating a heart.  
I repeated this with my thumbs so we could do a “mommy and daughter” thumbprint heart.  You can choose to do whatever you want!   
Once the stamp was dry, we cut them out into hearts.  I then let Rory decorate the card any way she wanted to and we glued the hearts to the card.  
Thats it!  Its just that easy!
Happy Valentines Day!

Monday, February 11, 2013

Valentine's Day Treats!

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My husband’s favorite cereal is Fruity Pebbles.  I am not sure if Rory likes it because she actually likes it or because her daddy likes it so much.   Since my husband hates chocolate, we decided to try this recipe out to see if it would be good for Valentines day.

I was driven to this recipe because it looked like a “rice krispie treat” type of recipe but with out the marshmallows, which is good because as vegetarians our family doesn’t eat marshmallows.   It also does not have any eggs in it, which is awesome because my little bug loves to pick at the tasty treats we make. I found this recipe in our Sunday Paper coupons, and adjusted the sugar a little.  
Materials Needed:
  • 1 cup light corn syrup
  • 1/2 cup sugar
  • 1 cup white chocolate chips divided
  • 1 teaspoon vanilla
  • 1, 11oz box of Fruity Pebbles
  • 13*9 inch pan
  • cookie cutters
  • Frostings if desired

We mixed the corn syrup and sugar in a bowl and placed it in the microwave for about 2-2.5 minutes on High.  You know it is cooked when the sugar is completely dissolved and the the mixture will boil a bit on the edges.  (you can also cook this in a saucepan, but because I didn’t want Rory around the hot stove, I chose not the microwave route.  
While the sugars are still hot, add the 1 cup of white chocolate chips and vanilla and stir until the white chocolate chips melt.  Then add the cereal and stir into your pan.  Let cool.
Once they are all cool, you can now shape the treats into anything you want.  We made hearts for our Daddy and and also did a “I and U” so we could spell out “I Heart U.”  
IT was a great baking activity that Rory could help with.  We can’t wait to show them to daddy!

Friday, February 8, 2013

Photo Friday!

Pin It This post is for our special birthday girl Mimi! We could not ask for a better mom or grandma! We love you!

Thursday, February 7, 2013

The Hole in the leg *pictures are gross

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When she had a new, clean, white cast we noticed some discharge on her cast where her incision was.  It was the part where Dr. Paley had informed us about with the dead skin.  It was pretty nasty so we decided to email Dr. Paley and send him some pictures.  
The hole begins...
We are very lucky to have Dr. Paley as her doctor- he received her email and responded within the day.  He wanted us to use a wet to dry bandage treatment on the area.  
Luckily, Jon knew what that meant and had the supplies on hand to do the bandages, because I didn’t know what it meant or how to do it.  This was another traumatic experience for Rory.  She had to have Jon and myself hold her down while we used some saline solution to wet the wound and help clean out anything around it.  We then had to put different bandages on it.  Anytime we had Rory’s cast off, it was traumatic for her.  She would scream, cry and you could tell was in pain.  I wish she would take Tylenol, just anything to help with the pain.  I know part of being “castless” was fear, she was so frightened of everything.

and gets bigger...


I would cry almost every time we had to change her bandages.  I was so worried that she would think mommy and daddy were hurting her.  I didn’t want her to think that this was something we were enjoying- we hated it every bit as much as she did.     
Since I have to know pretty much everything that happens to Rory, I read up on the treatment and learned that this treatment is mainly good for trying to clean a wound.  You put on a moist dressing on the wound and let it dry; hence, the name “wet to dry” bandage.  When you take the bandage off it should also take all the nasty grossness with it.  
We were doing this several times a day; however, her wound kept opening.  It started looking like it was becoming a “hole.”  The hole would get bigger and bigger it seemed like each time we looked at it.  It also was starting to smell.  It was obviously not a plesant smell, it was pretty nasty; and I knew something wasn’t “right” with it.  
and bigger....
We were getting more and more gunk out of it each day.  We were emailing Dr. Paley daily, keeping him updated, and on the third day  I woke up to an email saying reading, “Need to clean it out.  When can you come back down to Florida.”  
and then we began packing...
My heart sunk and I felt like I was going to throw up or pass out.  I was just frozen for a little bit; I thought this nightmare was over...

....here we go again....

 

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