Beginning again with doctors...

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Rory, Daddy, and Zin at the doctor

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

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

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

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

Best part about being in the Midwest!!!

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

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

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

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

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

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

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

Moving!

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

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

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

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

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

Rory's Dynasplint

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

We went to her shoe doctor to ger jt measured and to learn how ir worked. It's not what I expected, it's more "breathable".  To wear it her knee needs to be flexed (which is clearly not an issue for her).  You get the circle piece directly on the knee joint and tighten the Velcro strap to secure the knee. Then you tighten the strap on her thigh and the strap on her ankle. 

There is a knob on it for you to turn and we turn it so that her leg is straight, or as straight as we can get it. She can't walk with it on, obviously, so we try to have her wear it at bedtime, naptime, and if I let her watch a little tv. 

Sleeping with it is not the most fun, she often wakes up screaming for us to take it off. She does like it when I let her wear it when she gets to watch TV, since TV is a special treat at our house. 

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

Rory's getting a Dynasplint

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

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

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

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

Physical Therapy Progress!

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

Rorys favorite is getting to use the treadmill!

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

Rory on the big swing (one of her favorites)

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

fishing

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

Sick Bug!

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