Well, I am finally able to sit down and write after our fast trip to New Jersey to take Anna Cate to clinic. Clinic is always bittersweet. We get to see the top doctors and visit with amazing families who we have met once or twice, but instantly connect with as we share something that many people can not relate. Every time we see the doctors we cross our fingers in hopes that we get a clear report. Anna Cate got GREAT reports on her measurements (weight, height, BMI), GREAT reports from the main Rett doctor, but the orthopedist....mentioned the "S" word--surgery.
The surgery would be to lengthen the tendons in her left leg, which explains the fixed contractures (abnormal shortening of muscle tissue, rendering the muscle highly resistant to passive stretching) in her Achilles. Achilles Tendon Lengthening refers mostly to a surgical procedure whereby the tendon is stretched to allow a child or adult to walk flat-footed without a bend in the knee or to relieve chronic pain. The procedure is designed to lengthen a tendon that has not formed properly or has been injured. I did not think that we were at this point yet and wow it was a blow! Many of our friends have had this done with their daughters so I know there is a light at the end of the tunnel (way down there....). The one positive thing for us is that it is only one leg we are talking about. But the biggest challenge for us is that after surgery for two weeks she is to put zero weight on that leg! So the way I look at it is, for 2 weeks we are going to be living in complete hell with our "team" in full force, week 3 and 4 will be just hell, as she is still in a cast, but it will be a walking one and then week 5 we are more on stable ground, with AFO's until she is at the point where she can go back to just wearing shoes with nothing in them for support.
So now the question is when to do this? The doctor we met with said that we are at "that fork in the road" now. We need to make the decision, before her brain is "hard wired" to deal with that leg the way it is. Well, for those of you who know Anna Cate, her favorite time of year is summer as she loves nothing more than the POOL! So doing this during the summer, would be absolutely cruel to her. But waiting till Christmas break, when she is off from school for two weeks, may be too long. Ugh!
If we do it in the very near future, I just want to make sure that we are home free for prime pool time, which is mid June when she is out of school for the summer!
Needless to say the ride home left us with a lot to think about, as for Anna Cate, who is extremely on the go, this will be extremely hard for her. God Bless her!
And what would we do without Poppy???? Poppy always accompanies us at doctor appointments and long trips for Anna Cate's care without question. And it is so nice to have another set of ears and eyes listening and watching to help us figure out what is the best for Anna Cate. Thank you Poppy for always freeing up your time for our family even if it wasn't convenient for you. We love you Poppy!!!
Anna Cate is very blessed to have such an amazing support group at home and at school. She has many cheerleaders that only want the best for her. While I know the road ahead is going to get bumpy, I know that we will survive with the incredible "team" we have for her. However, this next mountain, she may need a little piggy back ride to get to the top!
P.S. Let's hope I have found the "miracle" for her behaviors by this point too, otherwise our little Ninja will have an advantage with her cast!
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