July 24, 2011

tough love happening here

Confused?

Well, here is a picture of my sweet girl. This is Annabelle MOST of the time. A happy, fun energetic little girl who loves to smile for pictures.


Then there is this is this girl with the super sad face. Annabelle is not enjoying walking right now. We are really struggling and she is not making much progress right now.



So what's a mom to do? I don't know - this is really tough for me.

On top of this we (Branden & I, her PT, her Orthotist and or Orthopedist) are all trying to decide what would be the best new brace for her. She needs new ones now as she has completely out grown her last pair (yea for growth) and they are not properly holding her feet. But, what kind do we get? A bigger AFO like she is wearing now, an AFO with a twister cable (to help with her outward rotation) or a ground reaction AFO that will provide more knee support? I really don't know as each has it's pro's and con's. The con's are pretty big in my opinion. The last two listed will limit her crawling mobility. This is a huge deal for me since Annabelle spends 90% of he life crawling. However, I worry that I am not looking at the big picture - will these other braces help her walk better?

I just don't know what's best for Annabelle and honestly I don't feel like anyone is giving me enough information to make an informed decision. I really need some guidance here. If anyone out there can help steer me in the right direction please share your thoughts, ideas and experience. I will be eternally grateful.

**ADDED TO CLARIFY based on several FB messages I received **

Yes, the professionals listed above all have ideas of what type of brace they want for Annabelle and they are all working together to make their recommendation. However, as her mother, I will have the final say with regards to what is actually ordered. Each of the professionals above bring great knowledge and experience but they do not live with Annabelle, they do not know her and her life like I do. I want to do what is best for Annabelle, not what is "typically" done for a patient with Spina Bifida similar to Annabelle's function level. BTW, we have been told that Annabelle functions at an L4 level. I want to make sure that her Dr.'s are always doing what is in Annabelle's best interest so that she can achieve the best life possible. I will not agree to over brace her. I need to be convinced that the twister cables or the ground reaction with knee coverage is the right thing before I will agree to this. I do not believe in "one size fits all" prescriptions or treatment plans. My daughter is an individual and I want to make sure she is always treated that way.

5 comments:

  1. Nicole, although I can't help you with your decision I can tell you that the walking/walker situation does move slowly and there isn't anything wrong with a little tough love. Nate has had his RGOs for months and months, and only recently did he actually start taking the smallest steps. He gets upset, pretends to be tired, gets easily distracted and otherwise tries to not do any work while in them most of the time. I just try to be patient-he was 2 when we got them and I just don't think he could wrap his little 2 year old mind around what actually using his braces and working hard would accomplish. I think at 3 now he is finally starting to catch on. We have really been trying out a little tough love, too, talking a lot about therapy and how important it is for him to try his best every time! (Plus we throw in a few m&ms when he does give a good effort, which helps). Annabelle is doing great-I'm sure in time she will come around. Good luck! :)

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  2. I just wanted to say that I think you're a great mama! Good luck with whatever you guys decide to do. She is so sweet!

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  3. Stubborn little girl! I'm not giving advice just a smile to let you know I'm thinking of you guys and your sweet Annabelle!

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  4. Poor Mama! It is so hard to watch your child bawl while you have to do the right thing and make them work hard! That sad face melts us every time...but you are doing a great job. No advice on the other!

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  5. I am sure I have told you this before, but I love reading your blog. You are so great with writing details. And Annabelle is just precious. I am no expert on this subject, but I just thought I would share a few thoughts. I love what Stephanie above has to say. Sometimes it's all about giving kids time to process, and grow. We work with an amazing physical therapist and one of his biggest philosophies is that therapy (or learning to do anything) for children has to be FUN first. If our children cry through something a few times, they may start to refuse to do it. Then it becomes an unwanted battle. It is a fine line, though. We have to encourage and challenge these kids. I for one do not want my daughter just sitting around doing nothing the rest of her life. I want her to move and be independent and strong! Ultimately, I think you will know if you are pushing too hard or too little. You will also know who to trust and what steps to take to keep her progressing. You are a great example to me.

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