Tuesday, August 10, 2010

Swallow PLEASE!!

Swallow study is what is on tap for the Maddie…everyone on Maddie’s team thinks it is the best thing…I am just worried it is a waste of time…I am not thinking she has a stricture…I think she does not pay attention and wants to play like any other 15 month old little girl…at birth she had her esophagus attached to her stomach and a fistula removed from her trachea…this is why they think she may have a narrowing of the esophagus, a structure or scar tissue…and why she is not able to have un-pureed foods…we will do the study in the next couple of weeks to determine the cause of her eating issues…so if it is not medical she will be referred to a feeding specialist to help us out…did I mention she still does not have teeth! And the doctor said she is not teething! Her heart appointment was great…her hole measured the same as last time…and since she is not symptomatic...no need to see the heart doctor for a year!! Yeah! Maddie has gained 4 inches in height she is now 30’ and weight 20 pounds! She is a BEAST!!! On our trip I was a little worried she had lost some of her gains…but her OT came today and all is well…just a little more therapy and we will be back on track!


On a side note…Doctors are so silly and annoying sometimes…when I mentioned that I spend 3 hours out of my day trying to feed Maddie…she said well if that is what it takes! REALLY!! I do have others to take care of and my sanity…not that Maddie is not cute but seriously! And when I mentioned I was trying to “normalize” her eating...she said to STOP! Funny everyone else tells me to not think of Maddie as being different to treat her the same as I did Max…I do that and I get the roll eyes look…love the doctor she just needs to have some kids to understand me!

4 comments:

  1. I hope that the study helps even if only to rule out the narrow esophagus. I truly understand your frustration for the time spent on feeding.

    We (both Terry and I) probably spent as little as three hours per day to feed Gabe.

    For us, we knew he had texture aversion, and it could be painfully long to get a full meal into him. But our patience really did pay off as he will eat a well rounded meal and snack now.

    Hang in there, Kimberly. I know that feeding was the one issue that I couldn't wrap my head around. Something like nourishing my child was seemingly "natural" and I thought it was suppose to be easy. But having Down syndrome really makes it a whole different deck of cards. Our kids work so hard on those muscles and co-ordination. It will get better. *hugs*

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  2. I made sure our doc had his own children because if you don't have them, you just don't understand! I hope everything goes well with the study, I know how frustrating eating issues are. Sounds like she's growing well though and pretty tall too!

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  3. I'm glad Maddies heart appointment went well, thats great! Hope you can figure out the feeding issues, sounds like it can be stressful at times!

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