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!

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!

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