Saturday, December 31, 2011

Respite Care!

Pin It Its official- We have Respite care for Rory!  We met with medicaid and human services to see what they can help us with.  It was so hard for me because they classified Rory's condition as "Disabled," which is really hard for a mother to hear.  The good news is that we get help for Rory after her surgeries, so her physical therapy and any other help she needs should be covered!

Now i get to look into hiring Rory someone to come and spend some time with so she can get used to them being around the house!  I am very picky with who will be around Rory- so I am lucky I get to interview and pick someone out.

I'm so excited because I have had many a sleepless night thinking about how I'm going to have to clean the pins in her legs and all the other fixator issues.  I know I will learn all the ins and outs of the external fixator, but until I get comfortable, it will be really nice to have someone to help.

Good Good Day!

Thursday, December 29, 2011

Therapy day!

Pin It This morning we had her therapy- Her therapist Wendy is wonderful- I love her- she is so good with Rory!  Today I had Wendy look at a few things:

When Rory walks her foot turns out, her left foot is fine, she points it straight and its perfect: but her right foot points around 45-90 degrees.  So I had Wendy look at it; she reassured me that its only because of the lift- because the lift is so big (5 cm) its hard for her to lug around, so to make it easier she points her shoe out.

I always worry about her needing that ankle brace.  She rolls her ankle sometimes- Not so much inside- she walks great outside; however when we are outside and the ground is uneven she rolls her ankle more.  Since its not too bad now, we can wait...but when she gets a new 6cm shoe lift in March we may have to look into it.

We worked on some stretches too for her- just to help the range of motion in her hips and knees.  Rory is so good with Wendy- She sat in her lap today, and was talking to her too!

Total Words so far:
mama, dada, mimi, pup pup, cheese, shoes, she can also moo, make the sound of a bunny and squirrel, and Hi sometimes!

Good Therapy day!

Wednesday, December 28, 2011

What A Christmas!

Pin It What a Wonderful Christmas!
Jon, Rory and myself had such a wonderful Christmas!  On Christmas Eve, we went to the park, it was a little cool out so we didn't stay too long, but Rory needs to get all of her energy out: so all three of us went to a park near our house.













I think Rory knew something was up, she only napped 45 min all day!
At night we decorated cookies, Rory had her cookie, but was just picking handfuls of icing off and eating them!  Rory is such a healthy girl, she never has a lot of sugar, so my homemade icing must have been like cocaine!  She loved it and was crying when we put the cookie decorating stuff away!






Rory went to sleep and we waited for Santa to come.  It was so much fun "waiting" for Santa!  I could not believe how excited I was!
Rory's big present was her tent- I knew she would love it!  (Smudge tried it out first...)

On Christmas morning- I was like a kid again- I kept looking at the clock and wondered if time was going to go by any faster.  It was complete torture waiting for her to wake up- and of course it was the one day where she wasn't up at or before 7!

It was amazing to see her face- she ran right in the tent and was playing in the tube as if she had done it a million times before!  It was so neat to see her actually open her presents too- last year she didn't open them because she was just a baby.





It was a small Christmas- she got her tent, some cookware and plastic fruit and veggies- and LOVED her presents!  Her aunts spoiled her rotten too,


Peppers!
Playing with Cookware
Fish Pillow from Aunt Helen!

 We are very fortunate to have such lucky friends out here in Virginia Beach, our good Friends invited us over with their family on Christmas dinner!  There was good food, good friends, presents, and a lot of smiles.  It was a great ending to a great day!







Sunday, December 25, 2011

Merry Christmas!

Pin It Merry Christmas Everyone!
Pictures to come!

Wednesday, December 21, 2011

Last Week in Pictures- photo Friday!

Pin It Guess who says Mimi now!!!! She looked at a picture of my mom and said "Mimi"!!!! She now talks to Mimi on the phone! Now she can say, mama, dada, apple, pup pups, and Mimi!





Appointment Update

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Yesterday was a big day for us, we were meeting her new orthopaedist at the Naval Hospital.  The trouble with Doctors and the military, and I must be nice considering I am married to a military doctor, is that:

1. With the military, you never know what you are going to get, I have had some of the best doctors (my husband ;) and some of the worst doctors...

2. some doctors- and this is not military but just a doctor thing- have egos larger than all the characters on the jersey shore put together.  they all think there is nothing they can not take care of and that they are God's gift to humanity...

3. The military is on a budget (who isn't...) so if they don't NEED to refer someone to a special doctor, they won't and will just send you to one of their doctors, which is fine for most issues, however CFD is so rare that this needs special attention.  When I scheduled this appointment with her new orthopaedist, his nurse told me there was  chance he wouldn't refer her anywhere....(this turned me into a mama bear...don't mess with my cub!)

playing with gloves in the waiting room



So... I went into the appointment optimistic, yet prepared to bring out my animal instincts if we were told we could no longer see Dr. Paley for her surgeries.

My instincts were not needed- Her new Orthopaedist came in and put us completely at ease.  He actually said he had Dr. Paley's text book Principles of Deformity Correction!  he understood the severity of CFD and was more than happy to help us do what we needed to do to get us to Florida!

It was neat too to see him curious about her condition, he looked at her leg.  He was interested in everything, the upcoming surgical procedures and everything- it was really refreshing, and I'm so thankful everything has worked out!

Could not have been happier!

We then went to-  see Santa....I was suprised at how excited I was with everything- it brought back so many memories and it was so much fun!










Monday, December 19, 2011

Cookie Baking Day in St. Louis

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Rory opening up her cookie baking day present from Mimi



It was wrapped in a target bag! hahah!

No...We were not in St. Louis for cookie baking day....but i wish we were!  Each year my family has a cookie baking day for Christmas where they all get together and, you guessed it...baked cookies.  My mother, the creative genius that she is, has always made us all aprons, headbands, shirts, etc for us girls to all wear on cookie baking day- it is really neat!  I haven't been in town for a cookie baking day in years, but i still receive gifts in the mail for things to wear on cookie baking day.  Rory received hers this year!  She got the same cute Rudolph shirt as her cousins and I got a Santa shirt (my first holiday shirt) just like my sisters.

Of course it made me miss home- I know I haven't lived at home since almost 18, but I sure miss it.  I have the best family every- we talk everyday either on the phone, texting, or skyping.  I'm not just saying that either- my family is the best....when Jon was gone, my mom and sister took off work and drove 5 hours to go to my hour long perinatologist appointment when we knew something was wrong with Rory's leg in utero...and they drove back that night.  Example 2: my parents were on vacation when we had our second appointment with Dr. Paley.  To help my tension, my parents drove across the state 6 hours away to spend just the night with us (they didn't even go to the appointment with us).  They are wonderful, and I know Rory loves them because when she does see them she doesn't hesitate and goes to them, she gives them hugs, kisses, and its as if she is around them every day, which Rory does not do with many people!

So happy she has a christmas shirt!

she loved pointing at the reindeer!  

I wish we could have been there to have Rory play with the cousins and see everyone.  Instead we made chexmix and "trial cookies" (to see if they could become possible Christmas cookies). We wore the shirts and loved them!

Thank you mom- We love you!
Shirts a little big- it may fit next year too!

Cousins in the same shirt!

Miss you, St. Louis Family!



 

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