Friday, January 30, 2009

never boring

A few weeks ago we went to see the surgeon that did Emma's spinal surgery before her first birthday. We meet with him to discuss her MRI and if he could tell us why she is not walking still. He is a great surgeon, but not the best person to talk to (that is putting it mildly). Well, he told us that according to her MRI's she should be walking and he see's nothing to stop it, but that there could be underlying nerve damage that would not have showed up on the test he did. Then, he told us she could or could not walk he did not know.

This was a hard thing to be told. We have known that it is a reality that she might not walk, but we have really never been told by a doctor that. So, where do we go now is the big question. After talking with a few of her therapist and friends we are pursuing a new doctor that deals with motor delays. He has been told about us and thought he could offer some help. We are waiting now to get an appointment. We hope that he will want to do some testing on her nerves to see if they are all working right. We really believe that she has some nerve damage, and we just need to know where or if to make sure we are doing the best therapy methods.

So on the medical front, we continue to look for answers and we do not give up on her walking. On the emotional front we have had a rough few weeks. It really hit me hard that my sweet angel my never walk or run. I have cried many tears over the thought that she might never have dance recitals, play soccer, or run to hug me. All things I have been dreaming of for so long. I also do not want her to have to struggle for the rest of her life with her mobility. Yes, most places you can get around in a wheelchair, but not places like the beach or skiing:) Plus, I do not want her to be made fun of or looked at funny. I want her to have it all! My heart is just so sadden and broken for my sweet Emma who wants so badly to run and play like her friends. She does not know that she can't, which is good for now. We treat her like nothing is different about her way to get around and most of her friends accept it as normal. We have worked hard to make it all normal for her and it seems to be working.

Mommy might be sad but life has to go on and we have to much going right to stay down for long. I know that I will continue to grieve what might not every happen, and I know that grieving is okay. I just have to deal with it the best I can. Which, is normally to not sleep, cry late at night, and love on my Emma.

I am emotional still running a little high, but getting better everyday. It is really hard to stay upset when Emma is so funny and full of life. Yes, it is sad to think your baby my never walk, but she does great in her walker and wheelchair. So, we wait on more news and never give up hope.

That is part of what has been going on in my life lately. It has really been weighing on me and I just was not ready to write about it till tonight.

Love and tears

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