Day 20, Cool Blue

Amber has been doing really well on the Recovery floor.

Amber is definitely being more active. Lots of smiles, even a few eye-rolls for Daddy.

We had a great session with physical therapy, occupational therapy, and speech therapy all together. They helped her sit up, and she started supporting her head herself. Then, they offered her a blue popsicle – and she opened her mouth WIDE and stuck out her tongue! A few licks later, she took a bite and swallowed! We even got her to stick out her tongue to show off how blue it was. That is the first food Amber has had in three weeks, and she clearly enjoyed it – so much, that shortly after we heard her trying to make sounds! PT/OT/ST were very happy with this (as were Mommy and Daddy), so tomorrow PT/OT are going to try giving her a shower and having her support herself (with assistance) on her arms.

Caron went home tonight to spend time with the rest of the family (we’ve been alternating nights at home), so we did a little video chat to say good night – and at the end, when I said “ok Amber, can you say good night to Mommy?”, I definitely heard some (weak) sounds from her mouth!

We continue to make good progress. Next week we’ll be looking to add a g-tube to make sure she is getting sufficient nutrition, and we’ve got 3 weeks to build her back up to be ready for the next major steps: MRI, surgery (replacing the skull flap) and then to begin the cancer treatments shortly after.

And so, we pray for strength and healing for Amber over these next few weeks, and the mental and emotional fortitude for all of us to start preparing for that next phase.

13 thoughts on “Day 20, Cool Blue

  1. Cool Blue! I was able to see my little angel today…and what a difference from last time. She held my hand and held it tight when I told her how much I love her and how much I miss her…Amber was back! I was surprised how good she looked and she gave me a thumbs up! We as a family will walk the journey with Amber Grace…God has great things for Amber to do and she has already brought together a great number of people that we would not have encountered otherwise…thank you God!

  2. That is great to hear! So happy to hear that she is making these amazing steps. We are all praying and pulling for her to continue to have the strength that God as given to her. She is quite a fighter and we miss her immensely in the classroom. Tell her that her class pet is wondering where her fish food is.

  3. Makes my heart smile!!! So good to hear her progress. Though a long road lays before Amber, she is working hard and showing just how strong she is. Can’t wait to hear her talk for the first time once again. Cousin Noah wants to video chat with her. Possibly this weekend if Amber is up for it? Love you all so much and miss you even more.

  4. Awesome news Amber! Keep working hard big miss and eating those popsicles!! Thank you Matt for this update.

  5. Oh such a great job Amber!!! What a privilege it is for your PT and OT to work with such a wonderful girl and family!!!…
    We are continuing our prayers here every day and asking for the intersession from Blessed Stanley Rother..his miracle needed for sainthood~

  6. Lord, you love our child as You love all children, Bring healing to our child who is not well. Stay by her side and comfort her through this trying time. Keep us ever mindful of Your loving presence Bless us with Your powerful healing and comfort us also. Thank You for hearing our prayer!

  7. Dave S. shared this link with me yesterday, so I’m just catching up. Thumbs up, indeed on Amber’s progress! You all have such tremendous courage. My thoughts and prayers are with you all on this journey.

  8. Chloe and I are rooting for you little Miss Amber!! Chloe sure misses you at dance class! Keep up the great progress!

  9. Great to hear of her progress. I can only imagine how great that ice cream must have tasted. Love how much happiness her progress is bringing in your life. Hang in there. Lot of people are praying for her and you guys. I’m here if you need anything.

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