Friday, July 20, 2012

The Light at the End of the Tunnel

I have written extensively about Eve's up's and downs with feeding and so I want to share this video with you all.  Since Eve received her feeding tube over a year ago she has not been able/willing to drink more than a couple of sips at a time, and she certainly was not able to do it on her own.  Every day we offer her drinks, over, and over, and over.  So many times I have wanted to give up, thinking it is hopeless.

Well, this week we had a major breakthrough! She actually started to tip her head back and take several gulps on her own!   John and I were practically in tears when we saw her actually drinking!  For the last few nights she has been able to drink about 1-2 ounces of milk from a sippy cup.  Here is a little video I took of her doing it.

I encourage her by cheering her on and raising my arms.  She seems to enjoy the encouragement because she will take a few sips, put down the cup and copy my cheers.  I emailed this video to Eve's occupational therapist, Ann Mazzeo.  I told the OT "you are not going to believe this!"  Here was her response:

I do believe this!  You made my day!!!!  She needed the "skills & tools" to be able to do this on her own!  This is because she has two awesome parents, that carryover, challenge, and listen..... and they have a daughter that is determined and wonderful to work with!  Thank you for this very happy share.
 We certainly couldn't have done it without all of Ann's encouragement.  Way to go Eve.  Thank you for reminding me that I should never give up or lose hope in what you can accomplish.

And here is a photo and a video of my sweet girl at Gymboree today.



  1. Love this!! It makes me so sad that I can't be there in person to share these milestones, but so happy to see her reach them. You two are so supportive and caring, we knew she'd get there with the two of you taking care of her. Thanks for the videos, we need more of them. xxx

  2. I echo what Heather says. Eve is her own person and with your love and encouragement she can be anything she wants. Well done all of you. xxx

  3. Really great progress - you all have so much to be proud of! Eve looks absolutely adorable at Gymboree! Can't wait to see her in a couple weeks!

  4. This makes me so happy for the three of you :)

  5. Good Night, I am mother of a child that also got Tegmento Pontine Cap Displasy.
    We are from Brazil e are going to Seattle in October/2016.

    We will appreciate to meet you and exchange experiences about our children.
    If you are a facebook user, please add me to your profile: my facebook profile is Teteh Sena
    Thats my name... Nice to talk to you.

    My son is 6 years old and has all the same features of your daughter.

    Thank you for your time!