Yep, today was the first day that Ella tolerated her sunglasses.
We tried them a few weeks ago on a walk, thinking that it would help her eyes adjust. She would have nothing to do with them. Well, today she was feeling more adventurous. I put my sunglasses on to join her. We were having a great time.
Ella slept well last night and got up around 5am. Nurse Michelle came over for a visit this morning. We grabbed a coffee initially, just having some one-on-one time. Then, we returned so Josh could start work and stayed with Ella.
Normally, Ella is in a good mood, especially with her nurse friends. Today, Ella was crabby. She was fussy and was not interested in being held or entertained by Michelle. When she was having major meltdowns, I would take her into my arms and she would calm down within seconds. Michelle looked at me and said, “I think she is having a Mommy day”. Today is the first time that I have experienced a Mommy day. In other words, it did appear that Ella simply wanted her Mommy. That was a new thing for her and me.
We have been trying to get in touch with the physical therapist, but have not had success. Ella and I did play a lot physically today by just rolling on the ground, moving her legs, stretching, etc. We had a good time. She was smiling for most of it and I could tell when she had enough and was getting tired (it didn’t take much).
We took a later lunch break and drove over to our old apartment community. They called the other day to let me know that a package had arrived for me. I wondered who had sent a package to my old address. When Josh walked in to get the package, he was instantly recognized by the staff. Sara, the leasing agent we worked with in the past, greeted him and was so excited that Ella was outside in the car. She made a point to come outside and see Ella in person.
Unfortunately, Ella was not real happy from the car ride and her general mood for the day. So there were no smiles for Sara. But it was nice to see her and know that she has been keeping up with Ella’s progress via the blog. We had no idea. It was just a blessing to be surprised by someone who had such a genuine interest and concern for Ella.
Back to the package, it was a sweet surprise from four of my colleagues, who are truly my friends. Once again, another complete surprise for the day. It was so nice for them to think of me and send me a gift to let me know that they will miss working with me. I feel spoiled!
We did not hear back from Dr. Kays office regarding the oil for her nightly feeds nor the results of her labs. We are expecting that information tomorrow.
Also tomorrow, we are going to see Dr. Sarantos. We’re excited to see her since it has been a month and we are looking forward to discussing some ideas for Ella related to food/weight gain. We’re not looking forward to the synagis shot, but getting blood drawn is worse, so I guess we’ll take it without too much complaint.
We know that with each day that passes, Ella is growing and getting stronger. We sense that it is going to be slow, but steady movement forward. We are trying our best to remain focused on why we are here in Gainesville and why I placed my career on hold: to give Ella the best chance at life. That is the entire reason we came to Florida in the first place.
Please pray for us, as her parents, that we will continue to be refreshed for the journey. We are looking forward to the idea of going back home, but know that we need to be obedient through this season while we are in Gainesville. Some days though, it is tough.
Fortunately, we have a obvious reminder of Him and His love when we look at Ella. We simply need to focus on that truth and what He has called us to do…and give Him our worries and concerns.
We thank everyone for your support and prayers.