Day 63, Not Enough Time In The Day

Amber had a nice visit with Dr. Martin, Allison, and Dr. Paul today.  Amber’s swelling on the right side of her face has gone down, so that’s really good.  Dr. Martin took out 3 stitches today too, which Amber greatly appreciated as those 3 have been hurting her, especially when the tight radiation mask goes on.

Amber didn’t do much walking around in the beginning part of the day because we were in the car for a while going to and from Hartford and then as soon as we got home she was sitting again for a quick lunch before radiation.  She ended up complaining to me that her buns were hurting.  When we got to radiation she opted for walking (with me spotting) instead of the wheelchair!  First stop before radiation though, the water fountain because she was a thirsty girl.  On the way to the fountain, a nice lady looked at Amber then to me and said “I will pray to God for your daughter.”  So meaningful . . .  Then Amber continued on to the radiation suite.  She did fantastic and I think she even impressed the radiation crew!

Originally today was supposed to be our first PT visit in Waterford but because of scheduling conflicts, it had to get pushed off to June 6th.  I’m a bit bummed that it is 2 weeks away because it makes me nervous for whether that will regress Amber’s progress.  Matt and I try to do as much as we can but on days like today where 2 appointments essentially took up the whole day, followed by a brief nap and then dinner, it’s hard to fit much else in.  I feel very guilty that I can’t do more with her, especially OT wise;  her left arm, hand, and fingers.  Michelle our new OT suggested some exercises with her but again, it’s hard juggling everyone’s busy lives and fitting “quick” exercises in.  However, with all this that I’m venting about, I will say that at the dinner table, Amber was able to relax her fingers and then make a fist, relax again then fist!  Relaxing her fingers has been a real struggle for her, so seeing this made us all rejoice.  Furthermore, later on, Matt called me into the family room showing me Amber shaking the maraca with a slight wrist movement!!!

4 thoughts on “Day 63, Not Enough Time In The Day

  1. You all are doing great!!! No way will it slow her progress. You are working with her everyday and those are all steps forward. Besides Amber is way to determined to go anywhere but forward. Such strength!!!
    Love you and miss you all so much. 💜

  2. It’s heartening to read that you guys have been able to keep focus on the positive, but haven’t completely ignored the negative; clouds bring rain, but rain helps the flowers grow, and there will always be more sunshine than rain.

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