Thursday, June 24th
Avery has done really well the past month. After her last scans, we cut off her NG feeds and substituted water overnight. After making progress with her fluid intake by mouth, we cut out the NG hydration as well. On June 6th, after she proved she would take her Bactrim by mouth, we let Avery remove her NG tube completely. We celebrated big that day with a water balloon fight, slip-n-slide play, and a bath with her head fully submerged in water:)
She lost weight initially, and then had a week of maintenance. She has recently lost a little bit more, but her activity has increased so it is a hard balance to find. We hope to see small gains over the next few weeks.
She had her monthly clinic visit yesterday for her port flush and labs. She did exceptionally well getting accessed and didn't whimper at all. It also helped to have our favorite nurse and getting to see some familiar faces. All of her numbers were slightly lower than last visit, but they were all within an acceptable range. Her ANC was 1140. We will have to go back in roughly a month for another port flush.
Today we had her follow up at the Hear Center. She has been very excited about getting fitted for hearing aides and has been counting down the days. For the half of her hearing screening she did exceptionally well following directions and performing the tests. The last half proved to be difficult, but with some coaxing we were able to finally get it finished.
She has picked out a pink glitter for the inner part of her hearing aides, and a pink metallic for the outside pieces. We go back in 3-4 weeks to pick the finished hearing aides up.
Her normal hearing(low frequencies) had remained unchanged since our last visit, but unfortunately her high frequency ranges continued to show decline. Her hearing loss is considered profound, and they said it was very tricky to manage. At this point, the hearing aides will not assist her diminished hearing to a place that would be considered in a normal hearing range, but they should be able to get it better which will improve her overall hearing quality.
We continue to enjoy time as a family and watch Avery getting to be a "regular kid" again. Thanks for your continued support and prayers!
She is precious... her smile is contagious! Continuing in our prayers & thoughts!
Great news!! Continued prayers for Avery! Just keep on sharing that beautiful smile sweet girl. Love you and your family.
Looking good, Avery. I wear hearing aids also. They make a huge difference in my life. Prayers for you to continue your life as a ‘normal’ kid.
Avery looks wonderful. So happy she is doing so well.
Great to hear this report. Avery and your family continue to be in our thoughts and prayers daily. She looks so beautiful and happy. Continuing to pray for complete healing from the cancer. God is definitely the miracle worker. ❤️🎈👍