The highlight today was seeing Kelsey and Ben Rupert. Kelsey is the mother of Ben, a CDH baby that was saved by Dr. Kays.

Last June 1st when we visited the NICU at Shands for the first time, Ben was one of the memorable CDH babies that we met. He had just been extubated and I clearly remember him smiling up at Dr. Kays. It melted my heart and proved to me that Dr. Kays must spend a lot of time in the NICU for this baby to know him.

Ben had his 1 year old birthday and looks fantastic! Kelsey has been doing lots of OT and PT every week with Ben since last September (8 months). She had 2 goals that she was striving for him to meet by his first birthday and he did it! He can sit up on his own and eat 1/2 of a jar of baby food! His shirt said it all: Stud Muffin. It was great to see Ben and the progress that he has made over this past year. It helps give perspective on how much more work Ella needs for her age and yet at the same time, what miracles and gifts these children are to us!

Unfortunately, Ella was fussy the entire time. She is just in that stage where she does not want to be around other people. So even when a stranger is near, it is enough to make her upset.

From there, we went to the physical therapy session. Once again, Ella cried the entire session. Only a few minutes of work was completed until the therapist handed her off to me. Since Ella was turning blue, she had no choice.

It is so hard to see your baby get so upset. I have to increase her oxygen and it takes me a long time to get her to calm down and breathe again. She looks at me and I feel like she is wondering why I am not rescuing her. And yet, she needs to do this physical work in order to get stronger. It is so tough.

As I was calming her down, a moment came that I was not expecting. Although our days in Gainesville are numbered, the PT went out on a limb. Claudia asked me what else we have in our schedule this week. I told her about our various appointments.

In a nutshell, she offered to come to our house 3 additional times this week, on top of Ella’s 2 regularly scheduled visits in her office! She was honest and said that Ella is simply not going to make progress by meeting 2x per week, at this stage. Ella has to get used to others handling her and that isn’t going to happen by only having PT sessions 2x per week.

Wow – – I was pleasantly surprised. This is someone who has been doing pediatric physical therapy for 26+ years and truly cares about her patients. Also, Claudia mentioned that she had a thought the other day when she dropped off the chair for Ella at our apartment. She has a colleague that is on faculty at the University of Florida with her. Apparently, she has about the same number of years in experience. The amazing part: this PT lives in our apartment community! So she told me that she would talk to her and see if she would be willing to take Ella on as a patient over the next 4-5 weeks while we are still in Gainesville. To make it seamless with insurance, she even offered to bill it through her office!

Claudia is certainly not trying to hand off Ella to someone else. However, if it works out, it would be amazing because Ella could get PT almost daily and we wouldn’t have to drive anywhere. Claudia knows that is best for Ella and us! If nothing else, she stated that Ella would get more used to being handled so that we would not have to deal with that issue once we are back in Denver. I just hope and pray that it works out.

Tomorrow is a busy day. An echocardiogram at 11am, meeting another CDH family in-between, Dr. Kays at 1:30pm, and physical therapy at 5pm. I’ve got to prepare all of the food and meds ahead of time since I will be gone most of the day. I’m hoping for lots of beauty sleep tonight.

Psalm 16:8-9
I have set the LORD always before me.
Because he is at my right hand,
I will not be shaken.

Therefore my heart is glad and my tongue rejoices;
my body also will rest secure.