Movie Star Par!

Par is going to be featured on the Children’s Miracle Network! He made is filming debut this morning—and slept all the way through it. I humbly accepted the role to play the loving and adoring mother to him—he was excellent and I expect we’ll now have to get him an agent—but I guess that can wait until we get back to Birmingham.

Dr. Kays has ordered to continue weaning the Nitric Oxide—it should be down to 10 by the end of the day. Depending on how his sats and blood gases look—they may continue to wean—but as they say over and over—it has to be very slow. It is now down to 11 (it was last weaned to15). They have also cut his Epi drip down. His oxygen is at 55 and they are weaning to 50 by the morning.

They told me he was wide awake this morning for about an hour just looking around—fussing a little bit—obviously just wanting his mama and daddy. When I got there he opened his eyes just slightly and then fell fast asleep—he just had to make sure I got there.



When they made rounds this morning I heard only positive things said about Par’s progress—they mentioned the fever from earlier but indicated it had been taken care of and isn’t an issue anymore. His incision looks really good and is healing so well…

I took off one of Par’s boxing gloves while he was sleeping—just to make sure they are still the cutest hands I’ve ever seen (and they are!) and he grabbed on to my finger. When I would try and pull away he would grimace and when I stopped he would relax—It was like he was this little puppet—pull, grimace, stop, relax, repeat. He is so precious—I know I really shouldn’t mess with him like that—hopefully he’ll just think it was part of his dream.

I got to be Par’s mama again today. I asked about his oral care and the nurse said I could do it—he has some “stuff” around his lips and mouth from all the tubes and tape and she showed me how I can clean it off myself—so I did it and he just gazed at me (the nurse had indicated he would probably fuss). Then I put him to sleep. After some tube tugging episodes that ended with me yelling for the nurse to come in (I’m sure I overreacted, but I would do it again—I’m sure I will do it again)—anyway, after all of the commotion little Par was understandably upset and I settled him down and then I put him to sleep. This is way different than me standing there and him falling asleep—I got to calm him and I could see he was tired and I cupped his head and feet and sang him some songs and whispered how much we love him and he drifted off to sleep. It was a wonderful feeling—I feel more and more each day that he knows I’m his mama. I know he knows instinctively that I’m his mama—but now it seems that when he looks at me he “recognizes” that I am his mama and I’m different than all the nurses who do stuff to him. He looks at me and immediately relaxes—very powerful feeling—another gift from God, I know.



When Rusty visited tonight Par was asleep but then woke up about 20 minutes into our visit. He was wiggling around a bit and then was able to make the slightest crying sound. I thought I had heard it earlier today but wasn’t sure, now Rusty has heard it—it is very soft and really weak sounding—but that is our little boy’s sound and I’ll take it any day over a silent cry. I asked the nurse how he is able to make the noise and he said it is because the ET tube isn’t cuffed like it would be in an adult and therefore it can have air leak out allowing him to make a slight noise. He said it doesn’t hurt him.



We continue to pray for the recovery of Par, Jonathan and Ella. May God bless their sleep tonight and send dozens of angels to comfort each of them during the night. I still am in awe by all the people around the world praying for these special children—and we thank you. We continue to take comfort in the plan of our Father—and although the roller coaster is going “up” right now we know there are sudden drops and we are clinging to Him for the next drop. Our prayer is for His perfect timing and for patience.
Love, Liz, Rusty and Movie Star Par