I meant to post this yesterday, but could not get back online last night since the iPad was set to YouTube’s dolphin healing music track and my phone does not work well for posting….. So, this is Sunday’s post.

The day started out not so well. I am learning that mornings will be difficult and doctors rounds are not always encouraging. One foot in front of the other and better today than yesterday are my mantras. With that in mind, the doctors said that we cannot really gauge her progress in terms of days but rather weeks. Will she be better next week than this week? That is the question. The doctors were all here at the same time today because they had a pow-wow in the hall to discuss Naomi and her progress. They continue to be conservative and give us worst-case scenarios. I am trying to appreciate that they do not want me to get my hopes up. I am trying to remain firm in my faith from day-to-day and remember that Naomi is right where God allows her to be. Keeping that in mind, we can make the best of whatever comes our way.

After a bad morning which took 45 minutes and a whole lot of screaming and tears to get her out of bed to use the bathroom, we managed to have a really good day. She did not need the heavy narcotic pain meds throughout the day and was lowered to a lesser prescription. She also never took a nap and did not run a fever throughout the day. Yesterday was the first day her temps dropped back into the 98s for any amount of time. Today, they remained there for most of the day. That is definitely progress. Though they are beginning to climb this evening.

As as for her activity, bribes are working great. She takes walks to the playroom for stickers and games. She walks to the window at the end of the hallway to have the sun shine in on her.  She was out of the bed more than in it today, and that is such a relief to see! As long as she walks each day I will allow her to choose something that she really likes to do in the evening. Last night, she did get her nails painted, aqua and lavender, alternating one then the other.  Tonight, she wants us to draw on her with henna. 🙂

Never underestimate the power of sibling bonds. Naomi has been playing with Lauryn all day and it is definitely showing in her mood and vitals. Her heart rate was lower today, blood pressure, too, and she laughed and had a really good time – she did not even complain that laughing was hurting her belly!

Tonight is family movie night and Aaron should be arriving with the other children soon. We also put together a schedule for the upcoming week(s) so that Naomi always has someone with her, Aaron can get his work done from home most days, or someone is helping us so all the children are taken care of while he is at the office. It is going to be a crazy life for sure. But she is improving and time will see us through this. We are eternally grateful to the dear friends of ours who have graciously stepped in to help since our family is so far away. There are so many of you who have opened your hearts and homes to us and we are thankful for you.

I wanted to to end today’s journal with some moments that I want to forever remember….
She has reverted to watching episodes of Blues Clues which was our favorite show together when she was a toddler. Blue is our mascot through this ordeal. Thankfully, the playroom has Blue stickers and each time we go there, she chooses a new one. And with Amazon Prime, we have plenty of episodes to last us a few weeks.
She has a good attitude about my needing to eat while she cannot. It began when Lauryn was eating in the bathroom and Naomi said that she wanted the company of her sister and did not mind if Lauryn ate in front of her. Later, I made a “kitchen” in the corner of the room where we were hidden from her while eating but could still be in the room. Naomi joked that she does not mind if we eat in the room with her “because she gets to eat in her sleep.” A few more times throughout the day she has joked that she eats ALL DAY LONG and even in her sleep! What strikes me the most is that I look outside at the desert and the mountains and feel totally helpless and useless. My child is enduring excruciating pain and there is nothing I can do for her. And yet, all she wants is my presence. Never estimate the strength of a mother’s presence. Sometimes, being there through the most difficult moments is all I can do, but for her, it seems to be enough.
I am amazed still at her innocence. All the crap she has gone through and she continues to be motivated by the most childish of things (and I mean that in such a loving way). She amazes me that she will walk to the playroom for a STICKER! To what lengths will I go for a sticker???? How about you?