Monday, August 16, 2010

just scared...

My mind has been in a fog...it is like when I was pregnant with Maddie and we did not know fully her tef/ea diagnosis…when I was pregnant they knew she had something wrong…but could not know for sure till she was born if she had full aterisa or a fistula…if her tube was long enough to attach back to her stomach or not…so it is the waiting game again…not knowing if she is stricturing in esophagus, has built up scar tissue, a narrowing of the esophagus or just that she is picky and sensitive to textures…so I am worrying if she is getting enough food and drink…she is only eating 4 to 6 containers of # 2 gerber pureed foods and 8 ounces of whole milk…I KNOW!! not enough…she is cranky and tired…she is not herself…I am not myself…I hate when people say well think of the positive…at least she is not (fill in the blank!)…REALLY…this is my reality and I hate it…an that is ok! Last week someone said to me that I need to get over my phobia of seeing Maddie’s future…that they know many people that had to see what there future looked like…me not so much...I said to her...NO thanks that it makes me nervous! And it really does I told her I will stay in this moment...a content moment...of a different fear…a fear that my little girls esophagus is closing as I sit here…that she is in pain and I can do nothing about it…that this will be a yearly tune up of her going to the doctor and having this surgery…so looking into the future is a raw deal…happy thoughts???

6 comments:

  1. Our oldest daughter had a TEF at birth. She does not have Ds (that's our youngest :)).

    Our daughter with the TEF had a stricture and had to have a procedure to widen the area with graduated tubing. Is that what Maddie may have to have done? If so, it was quick and recovery was easy. We only had to do it once and did not have the problem again.

    The swallowing issues are scary! We've been there, too!

    I know you'll be glad to have some answers after the 25th. Whether it is more feeding help, or a procedure to widen the esophagus, there are things that can be done to help Maddie. You will get some answers and move forward. That is the bright side :).

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  2. Sending you lots of prayers and hoping you get answers on the 25th! I'm sort of a stay in the present type of person so I say focus on the now...one worry at a time! HUGS

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  3. I cant even imagine how difficult all that would be to deal with and to have to think about,you must be so worried. I wish there was something I could say to help. I hope you get answers soon so that you can be at peace...until then, hang in there!

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  4. I hate when other people put their two sense in! Every DS child is different, and has different problems. Hopefully they can take care of the problem, and it won't be a yearly thing!

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  5. Praying 4 Maddie and you! I have a hug and an ear for you any time you need them!

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  6. I am so sorry that things are so stressful, I would be scared sick too. I am praying that they are going to help little Maddie with her esophagus.

    As for that comment, one of the greatest things that I have learned from Lucas's diagnosis is living in the moment. Instead of thinking about tomorrow I relish every moment and it's wonderful.

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