Time Marches On

When we are released to go home from the hospital, I am filled with apprehension.  We still do not have the results from Elena’s chromosomal testing, and my husband is convinced that she does not have Down Syndrome.  I go along with his notions, but all the while the aching in my heart tells me that the doctor’s are right.  Elena developed Jaundice in the hospital, and while they are allowing us to go home, we have to have a nurse come and draw blood the next day to check her levels yet again.  We also take Elena into visit our pediatrician for the first time.  She has lost weight and we are required to go back in once a week for a weight check.  When Elena is two weeks old, our pediatrician breaks the news.  The test results are back and Elena has trisomy 21.  “Well,”  she says, “we know she won’t be a doctor or a lawyer, but that doesn’t mean she won’t live a happy life.”  For some reason, still, this really bothers me.  I don’t want Elena to be put in a box and only be expected to accomplish minimal goals because she has been diagnosed with Down Syndrome.  I know that our pediatrician meant no ill will by her statement, but it makes me wonder what if that’s what everyone see when they look at her.  I believe with hard work and perseverance, Elena will accomplish whatever she puts her mind to.  And I will be there every step of the way.

The past four, almost five, months have flown by.  We have had a multitude of doctors appointments.  Elena has an ASD heart defect which has required us to visit the pediatric cardio team at Mott Children’s Hospital.  The doctor’s are hopeful that the hole in her heart will repair itself, and so I must do the same.  We have visited the Audiology Department at Mott, and there is some concern about hearing damage in her right ear, but we have to go back for some more testing in January.  We have seen a pediatric GI specialist, and also a pediatric opthomalogist.  So far, the overwhelming consensus is to wait and see.  Things could fix themselves OR things may have to be corrected by our growing team of doctors and specialists.  I am trying my hardest to stay in the positive, which is not really in my nature.  I am a worrier down to my core and am trying to curb my desire to worry this situation to death.  On top of all of these struggles, we have had a very difficult time getting Elena to put on a decent amount of weight.  Weekly visits to our pediatrician make it almost impossible for me not to collapse inside myself.  (As I write this, we have made a turn for the better and are beginning to see a positive weekly gain in weight.)

Elena has a weekly visit with her physical therapist.  I have found our visits with Roybn to be incredibly helpful.  Each week I am able to learn new exercises and things that I can be doing with her to help her meet her milestones.  I have come to terms with the fact that she won’t meet these milestones at the same times her brother and sister did, but she will get there.  I am filled with a determination and belief that the more work I put in the greater our rewards will be.

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~ by triumphsforelena on November 13, 2010.

One Response to “Time Marches On”

  1. You are such a strong mama and Elena has a wonderful family standing beside her. That little girl is going to teach you guys so much and change the way you look at the world. She is going to fill your hearts with such happiness and amazement! I’m sure it’s hard, I can’t even imagine…but she can and will accomplish anything she wants to. Give that little one kisses for me and know that I think you are doing an amazing job with her. You are blessed to be her mama and she is blessed to have such a loving supportive family. Thank you for sharing your journey with us.

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