Day 24, a Word is Worth a Thousand Pictures

We started the day with a trip to the imaging department, for a fluoroscopy to confirm all of her internals are flowing correctly, to prepare for the g-tube surgery on Monday. Was pretty cool watching in real-time as the contrast worked it’s way through her system, with the scanning machine snapping dozens of pictures. Everything looks good, so we are full steam ahead for Monday.

We returned to the room, and started to watch TV, when I decided to try something else – because too much TV isn’t good for anyone. I handed Amber a crayon, and held a coloring book in her lap. And she immediately started coloring! Not just scribbles across the page either – she stayed inside the lines, indicating (to me, anyway) both good vision and good control. She didn’t get very far on her picture before tiring out, but this work of art is going right on the fridge!!

But then, as I’m putting things away, I think I hear Amber breathing roughly, like she did when the breathing tube was removed. I look over, but she doesn’t seem to be struggling at all – when I realize that she is moving her lips and making sounds! I can’t quite make out what she is saying, but she is definitely trying to talk. So I encourage her and tell her I love her, and I ask if she can say “I love you” – AND SHE DOES! Very softly, but more than just a whisper, and very clear. It is pretty hard for her, but she is excited, we are excited, and she does it several more times during the day. This is another major milestone for her!

Then, we cap it all off by taking her for a stroll outside. It’s a beautiful sunny day, about 70°F, and Amber’s Physical Therapist got everything lined up so we could take her out in her wheelie chair for about 40 minutes. To make things even sweeter, her Speech Therapist lined up the permission for us to feed her a popsicle, so we are outside in the sun, eating the best tasting orange popsicle ever, with her brother and sisters, aunt and uncle visiting too. This was a wonderful picture to see.

Lots of beautiful pictures today, surpassed only by the beauty of a few words, delivered by our beautiful Amber. We thank God for letting us experience this beauty today.

13 thoughts on “Day 24, a Word is Worth a Thousand Pictures

  1. Awesome job Amber !! Had a great time with you yesterday! ❤️❤️❤️❤️

  2. Love that you were able to hear her say “I love you” she’s a strong girl!!

  3. we love you sooooooooooooo much! cannot wait to see you! hugs&kisses. Thank you God for this special time with Amber Grace. love, pep & mem

  4. Awww… just so amazing!! Auntie Mel needs that picture!! Love you all and miss you even more!!!

  5. What wonderful news!!!! Amber, your progress is amazing! I will share this with the sisters! Once again, one miracle at a time!
    God bless you!
    Sister Mary Patrick, SCMC

  6. Hi guys,
    We can not even begin to imagine what everyone has been going through, especially for Amber. I am up that way 3 to 4 days a week at UCONN for my medical issues so if anyone should need a ride or something transported to, from the hospital please give us a call. Our thoughts and prayers are with all of you.

  7. I love reading your blog about Amber and the incredible strength you show us. You are experiencing such heartache as her parents. She is really a super little girl and has come so far. The love she has around her will help you all moving forward. Prayers for continued strength.

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