Another busy, exhausting day for Amber – but again, forward progress.
Physical Therapy had her on the floor with me today, and tried a few positions. She did well propping herself up on her elbows (yes, both of them!), but was pretty worn out from yesterday’s PT so she didn’t last very long. She woke up a bit, though, with Speech Therapy. While she didn’t want the chocolate ice cream they tried first, she definitely liked the orange popsicle. After a bit of a nap, we got back on the floor with Occupational Therapy, and I got to snuggle with her a bit. Then it was nap time again.
A quiet evening, but then it was decided that Amber should have GI scan tomorrow morning to prep for the g-tube surgery on Monday. So, we are switching off her food at midnight tonight, and supplying only liquids, by IV – but of course, her one remaining IV decided it’s been in too long (3 weeks) and needed to be replaced. Amber’s veins decided not to cooperate too well (they’ve been through a lot lately), so it took 3 tries with lots of tears – but it’s done, and I sit here now watching her sleep peacefully.
I prayed the Rosary earlier tonight, reflecting on the Sorrowful Mysteries. I may not be able to understand exactly what Amber is going through herself, the fear, the pain, her trial. But as a parent, as Amber’s Dad, I find my own pain, my agony, in not being able to take this for her, in not being able to just fix this for her, in not being able understand why this must happen.
And so I have spent much time praying to Mary, asking for her intercession as a sympathetic parent. At this point, we know what Amber must go through (there is no looking back), so we just pray for the strength for her to continue forward, and the strength for us to carry her, to take as much of this burden as we are allowed. And as we have throughout our journey so far, we pray for those that are providing medical care to Amber, that they have the strength and clarity to continue to provide the best possible care they can.
Amber's Way 
Amber Grace…I thank God for the time shared with you today and the wonderful hugs & kisses…even kisses for mem in my pocket to give her…see you soon. love, pep
I think of you as a family everyday and pray for God’s strength to infuse Amber and you as her parents as you try to balance everything. I pray for her sweet sisters and for Ryan. I pray for Grandparents as they try to fill the gap. I think of her extended family who love you guys too. *Isaiah 43:2, *Romans 8:38-39 May the God of all comfort, Comfort you all now and going forward. *Phil 4:7.
Matt/Caron- I’m going to speak on the behalf of your daughter Amber for alittle. Its more of a spiritual aspect that Amber is going through right now. She Knows that she needs to keep fighting but its not her! Its the Lords strength in her right now FIGHTING. You need to pray over her evry morning for all needs. BUT tell her to listen to that Voice inside of her
You know my story my Family here. I almost left this physical life three times now. The last in 2014 in the hospital, so that’s why I wrote that to you BOTH. I’m so so so proud of you two!!!!
It is hard Matt for sure. As parents we want to to all the pain away. You are an amazing Dad!! You keep praying and we will as well. With all of our prayers it will make your family strong. To get threw this with Amber. I am so happy you got to snuggle your baby girl. Many prayers, and Healing vibes sent everyday. Love you and miss you all.
Dearest Amber, Caron and Matt, Please know that I send an outpouring of prayers and love from my heart and soul to all of you and your entire family. I truly believe that Amber continues to receive blessings from God and the beautiful celestial souls of Ned, Heather, Pepe Frank, Sister Emanuel, etc who are also watching over her. My thoughts, love, faith and healing prayers for Amber, family and caregivers are a part of my everyday.