Day 27, Pudding, A Graham Cracker & Juice — Oh My!

Amber’s G-Tube placement was a success. She was in a bit of discomfort during the night and a bit of today. However, the more annoying thing that bothered her today was wearing her helmet — which aggravated her healing (and very itchy) scalp.

After some OT on the mat that consisted of playing Legos and Squigz with our fill-in therapist Erin, Amber ended the session in her chair. She did well in the chair for a while. . . but that poor itchy scalp, being contained in a warm stifling helmet, was not making Amber a happy camper anymore. Once back in bed, helmetless, with a very much needed gentle head massage, and then cold damp facecloth, Amber was back to her content self.

A few hours later it was time for PT and ST together. The therapists were surprised and amazed by Amber’s words and communication! Amber went down with Lauren on the floor mat and worked on building her neck muscles. Lauren seemed pleasantly surprised at Amber’s controlled neck movements; an improvement since Friday. After some more PT, it was time for ST. Sara asked the question Amber has been waiting to hear since Saturday. . . “Amber are you hungry?”. Her eyes lit up with a big nod. But Sara wasn’t letting her off the hook “You have to tell me Amber, are you hungry?”. . . Amber looks at Sara, starts to nod again but catches it, “Yes!”. Sara gives her a list of items she can choose from and Amber settles on “Vanilla Pudding”. Next question was if she wanted something to drink. “Yes”. Amber chose “Apple Juice”.

After Sara came back with the items, she had Amber begin with the pudding. Sara took a spoonful, and Amber took a bite. Sara scooped up another spoonful and asked if Amber could feed it to herself. A head nod and “Yes”, so Sara hands it to Amber who proceeds to give herself a proper bite. Like, a direct hit into her mouth bite! After a few more like this Sara thinks out loud saying “I wonder if we should try Graham Crackers? Amber do you like Graham Crackers?”. Amber nods and says “Yes”. I run and grab some Graham Crackers and hand them to Sara. While Sara breaks off a piece she reminds Amber not to shove the whole thing in her mouth — and she doesn’t. Amber takes a perfect Amber-sized bite, chews it and swallows. Takes another bite, chews and swallows. Now if I wasn’t Amber’s mom and didn’t know the backstory of the fact that Amber hasn’t had solid food now for 27 days, I’d think this is just another healthy kid having a plain old typical snack. What she did was so effortless!

Rockstar. That’s what they all called Amber. After the Graham Crackers was Apple Juice, which Sara started off using a spoon for but by the end Amber was sipping from the cup. After some sips and a cough, she had some more. Then, she was done. . . She pointed to the bed and told them she was “tired”. She did well, really well. The girl deserves a break!

All I can say is, that’s my girl, that’s my Rockstar! Sara said that she is ready to try a lunch tray meal tomorrow!! Bring it on!!

So many blessings and miracles and happiness for Amber (and us). God is Good.

15 thoughts on “Day 27, Pudding, A Graham Cracker & Juice — Oh My!

  1. Wonderful progress! As you have alluded to in your earlier posts- the way to eat an elephant is small bites. Amber is trying to nibble some off for herself! Way to go!

  2. Oh God, That’s amazing. Go Amber!!! So very happy to hear she is eating. She is showing us her strength every day with something new. Love it and keep it coming!!!

  3. You are a superstar for sure Amber Gracie! We love you so much. Sending you tons of hugs and kisses! Mem and Pep 💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕

  4. 🌸✝️ Praying for God’s continued blessings of healing and strength for Super Rockstar Amber Grace 🌸😇

  5. What wonderful progress, Amber! Way to go!!!! You are amazing! May God bless you! One small miracle at a time! Only, I think that the miracles are becoming bigger!
    Love and prayers,
    Sister Mary Patrick, SCMC

  6. Caron, this is Dana, Melainey’s mom. You may not remember me.
    I JUST heard about Amber. I am so incredibly sorry for all that she and you and your family are going through. You are all in my prayers.

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