We had a great visit with all the folks at the Rubin Institute for Advanced Orthopedics in Baltimore. First of all Lark was a champ
while traveling. No tears or melt downs on the flights just sweet smiles for everyone. She was awesome, like always!
Everyone at RIAO was great! We enjoyed meeting all the staff
but also all the different families and hearing all of their stories. It is so
comforting to meet others that have been down the road we are just now beginning.
On the scale of things Lark has a severe case of PFFD or CFD
as RIAO calls it. She is projected to have a 33 cm difference which is around
12.9 inches. Even with a severe length difference her joints are in pretty good
shape, which is wonderful. It is still
hard to see what her hip is actually doing, we do know that she will need the
super hip surgery. Below is a rough
timeline of what Lark's possible journey could be if we went down the path of
Limb Lengthening.
AGE
|
PROCEDURE
|
PROJECTED GAIN
|
18 months - 2 years
|
Super Hip Surgery
|
2 cm
|
3 - 4 years
|
First lengthening with an external
fixator
|
7 cm
|
8 - 10 years
|
Second lengthening
with an internal fixator
|
7 cm
|
11 years
|
Shortening of her right leg (Epiphysiodesis)
|
5 cm
|
13 - 14 years
|
Third lengthening with
an internal fixator
|
8 cm
|
16 - 18 years
|
Fourth lengthening with an internal
fixator
|
The difference
|
Above is the x-ray that was taken at our appointment with Dr. Standard's drawing of what he thinks is going on with Lark's hip.
I think the best thing to do is
to take everything one step at a time. First being her hip. We will visit Dr.
Standard and his crew at the beginning of the year to x-ray Lark's hip again
and get a plan in place. All in all I think we had a very good appointment and
I feel like some of the questions we had were answered. We also got a very
comforting feeling from RIAO, which is a very important
thing.
Lark in our hotel in Baltimore |
Great news about the hip. What does CFD stand for?
ReplyDeleteLove~Tori
Hi Tori,
DeleteCFD stands for congenital femoral deficiency. Thanks for stopping by the blog. If you don't mind me asking how did you find Lark's blog?
Thanks,
Lark's Mom
I wrote it down when you stopped by to see us at the doc's office. I've been checking the blog this whole time but just hadn't commented until you called it CFD. I really like how she sticks out her tongue for the pics.
DeleteTori from Dr D's. :)
Hey Tori! Sorry, it didn't click that it was you! We are still talking about how wonderful you, Dr. D and Dr. C are!! Thanks for everything you did for us! You guys ROCK!!
DeleteHope you and your crew are having a good summer :)
Great to hear, still want to contact you, how can I do so?
ReplyDeleteHi Revital,
DeleteThanks for the your comments. I would be happy to be in contact with you. Do you mind commenting with an email address where I could reach you? Also, if you don't mind me asking how did you find this blog?
Thanks,
Lark's Mom
Dear Lark's Mom
DeleteCould you please email me to
Eden2702@gmail.com
by searching PFFD children.
Looking forward:-)