Tuesday, October 20, 2015

2 months at home!

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I can't believe we have only been home from Florida for two months, it seems crazy to think the girls and I were there by ourselves for almost 9 months! But we are home and we are all doing very well.



Just wanted to give you all an update on Rory. She's doing very very well. Her leg she can bend about 90°, and about 85 by herself. Although it doesn't seem like much, for her it is a major accomplishment!  

We are going to see a new orthopedist the first of November here in St. Louis. He actually just got back from visiting Dr. Paley so hopefully he will be able to help us out with all of our needs here in St. Louis. We are scheduled to go see Dr. Paley for a follow up in December, and once he gets her evaluation from her new orthopedist we will know more on what we will do in December.

We do her physical therapy three times a day for 30 minutes at a time. She is doing so well. I push her hard but that's because I know she can do it and I will do anything to prevent us from having another surgery. 

We always celebrate small things, like going up the steps 1 foot at a time and not pausing on each step. Or how she can sit down and have both knees bend at the same time- Little accomplishments like these mean the world to us.

Currently she just has a 1 cm left on her shoe and we're hoping that is all she's going to need for a while. She loved being able to wear shoes without a lift, and I love to see her in regular shoes as well. 

We take one day at a time...making sure we smile multiple times each day!

Thursday, July 9, 2015

Update on Rory's Knee!!!

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Rory update! We saw Dr. Paley on Monday. He looked at her knee and said he could fix it, but it would be a major major operation and very difficult recovery wise for her. For those of you that know Dr. Paley, anytime he call something a major operation is quite concerning!  And he put the fear of God in this mama!

We want to make sure we do everything we can before we have this operation. So we are doing physical therapy twice a day once in the morning and once in the afternoon with his physical therapist, the physical therapy is no joke. She is very sore to the point where she doesn't walk much. She will either scoot on the floor or use her wheelchair, because she is sore. I am also doing physical therapy in the house three times a day, too. I'm doing it as hard as I can because I really want to avoid the major operation (I keep hearing him say "major major operation" in my head!  Horrifying!).  

She is also getting a custom made brace for her leg so that she can keep her knee as straight as possible after therapy and we do not lose any range of motion. She will wear it at night and anytime she's not doing therapy. She is also meeting with Dr. Paley so he can make sure she is progressing properly. 
So far: her range of motion gets better every day!  I am very excited each time they do measurements!!!  I have to be positive about it, and am not going to worry about the major knee, ligament, and tendon operation and focus all my energy on doing what I can do to get her leg back to normal!  

It is all pretty tough and the therapy is pretty intense, but she's doing really well. She loves being with the other "Paley Kids" and seeing all of her friends she made over the November- May lengthening she had. when she asks when we can go home I just tell her, "after we see all of our friends and get to watch the minion movie." I try to keep her and Zin as happy as possible. I will keep you updated as much as I can!

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

Monday, June 29, 2015

Update- Trip to Dr. Paley this week

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Here is a current update on Rory.  She's having straightening issues again.  Poor girl, she can walk on it, but only for a little bit and she starts to hurt.  She will walk with her knee locked around 45 degrees.  I will do straightening stretches with her in the house (which bring me back to about 2 years ago when her whole straightening issues began).

So this week we are headed down to Florida.  The tricky part is we aren't sure if we will be there for one week, or a few months.  We will find all that out on her appointment.  Either way Zin gets to come with us.  It would be super easy if it was just a down and back appointment she could easily stay here, but if we could potentially be down there for months; that opened up a whole new can of worms.

There is a huge difference in packing with kids for 3 days or 3 months, and booking hotels, rental cars, etc...  The normal quantum house was full so we will stay at a hotel for the mean time.  The hotel close to the hospital is not ideal because of the neighborhood so if we have to stay for months I may try to find a spot similar to where we stayed during her lengthening, where my kids can walk outside.

Its difficult because we just came home, whats hardest for me is that I thought after this lengthening we would have a "break" in major issues that required us to go down to see Dr. Paley; (but then I remembered Rory's body is almost post-human in the way it develops....i tell myself that to make me smile...).

Just when we thought we were home...we have to leave again.  Please keep her in your thoughts and pray it can be fixed non surgical!  Its very scary when you book a one way ticket, but here is hoping that Rory gets the break she so desperately deserves and we are back in a week.

Wednesday, June 17, 2015

Rory Update!

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It's been such a long time since I have updated the blog and for that i am so sorry!  We have been really really crazy!  Here is a little update on what has been going on:

Rory got her fixater removed on the 18th and had a rod put in.  She's had to keep off it this first month: no weight bearing, walking, dancing, nothing.  Doing that with a 4 year old isn’t easy!!!  Its been really hard for her....but we take one day at a time.  We went to a new doctor yesterday for her 1 month follow up.  She liked the new Doctors office because the room we were in was the Alligator room (which reminded her of Florida!)  

Her Doctor looked at her X-ray and her new bone looks really great! It has healed very strong and healthy! I was so worried about the rod causing her an infection- but everything looks great!


Her knee on the other hand is causing some issues.  Her leg is subluxing pretty bad and we are waiting to hear what Dr. Paley would like to do.  Her ortho seems to think she will need to have surgery on it eventually: whether it is now or in a few years....she will need another procedure on her knee.  Of course....this was the last thing I wanted to hear...I know we have at least 3 more lengthening of the femur and 1 lengthening of the tib/fib; and was really hoping that would be it.  

We sent everything to Dr. Paley and now we play the waiting game....

Adjusting coming from 6 months in Florida has been difficult.  We moved back into a new house so we could be close to a doctor Dr. Paley has recommended.  I have also decided to go back to work.  Im a beachbody coach which I’m completely stoked about!  I still need to stay at home and be able to take Rory to all her appointments, so going back to work was out of the question.  I love healthy food, I love helping people, and l love fitness so this is a perfect job for me.  So if you are looking to get healthier or know of someone else who wants to have an awesome health coach send them my way!  Id love to help them!  

http://www.teambeachbody.com/havalynnauss


Although it is nice to thing that once we got home everything would get easier and better....but we are still working little by little each day to get back to normal...and slowly but surely my girl will be up and I'm sure ill be out of breath chasing her!

Monday, April 13, 2015

Just a little over a month!

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Thanks everyone for all your help!  We have a little over a month to go!!!

Thursday, March 26, 2015

Rory Update!

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Sorry for the lack in posts- the two kiddos have me pretty busy down here!

Rory has recovered well from her 8th surgery.  She has been working hard on getting her knee range of motion back.   This week we have been adjusting her knee bar that she wears at night.   The knee bar locks her knee straight; its been hard for her, but she is doing great!

In 2 weeks we will find out what Dr. Paley would like to do with her; if she will need another knee surgery, if we can go home, if the fixater can come off....

Monday, January 12, 2015

New appointment!

Pin It We have another appointment with Dr. Paley today. Wish us all good luck and lots of new healthy bone growth!
 

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