I'm writing from a hotel room in Punta Gorda, FL. The last 7 months I've been working down here. This may have been the hardest 7 months of my life, and I know Lindsay's. Bentley and Ally are in 2nd grade now. Bentley is now 10 years old. She and Ally are in the same grade, and they will be until graduation. We held Bentley back twice. That's a story and a blessing in and of itself. However, this year B has only been to school 3 days. Ally has been flying solo often as she doesn't have her sister to run toward and give a hug to in the lunch room or down the hall. She's been a boisterous and spirited 7yo as usual, but needs her family back under one roof on a daily basis. This time apart has been a challenge for all of us.
Always taking an opportunity to not only provide B with the best resources possible, but also take advantage of modern technologies for her, I wake up each morning and open her camera on my phone to take a quick check on her before I start my morning routines. most mornings Bentley is wide awake at 330am central time. She's playing with a pie tin or fireman's hat, or solo cup, or some other item with an attractive texture. I'll catch her wanting something different and waking up her mother by pulling off her bipap mask to make an incredibly annoying sound of whooshing air, which we can't help but wake up to. Lindsay walks in, finds a few toy options for B, and goes back to bed. This exercise happens from 1 to 15 times per night. We don't often count, but one night I watched the "game film" and counted 13 times Lindsay had to go fix her mask and give her a toy.
I digress somewhat. I miss my girls. I look forward to getting back under one roof soon. For now, know that B is a growing 10yo. She now has a GJ feeding tube, and is fed by tube feed around 16hours per day. She requires quite a bit of airway support by means of a bipap device during the respiratory season. She's finally gaining some weight. Now weighing in somewhere just shy of 40lbs. Her home-based step-down unit has in full swing and we are building a stable of nurse babysitters to help give some respite to Lindsay and allow us to give Ally some much needed exclusive attention. The daily challenges continue. We are grateful for the commmittemtn of our parents as Mimi and MommaB have supported Lindsay every week since I started this new job in August. They rotate each week and even Bentley has picked on the rotation as she communicates her anticipation for the next grandmother each weekend.
We are grateful for the opportunities God places before us, and have confidence his will is at play each day. Thank you for your interest and support of our family.