9:10pm: [Kristen's Entry] Reid is having a good day today. He hasn't been fussy at all --just lays in his crib, looks at his balloons and sucks on his beloved "Wub-a-nub". :) He did about 45 minutes of physical therapy today and seemed to really like it--he was so relaxed he fell sound asleep and had a very stinky poo. I learned how to roll him over on his side and stretch his torso a bit. He's not strong enough to stay rolled to one side yet, but he'll get there. He brings his hands to his face or chest while on his side (which according to the PT is very appropriate as it is a form of self-soothing), and he looked very comfortable so I think once he gets stronger he will really like it. We are supposed to roll him to each side a couple of times each visit. We also sat him in a seated position and helped him hold his head up. Reid did so well. He tried so hard to keep his head up--this was evident from the head bobs--but gravity won each time after only a couple of seconds. After laying down for the last 5 months, I'm sure sitting up for any amount of time is simply wonderful. Chad and I are worried that he looks up too much--he is fascinated with the ceiling lights and doesn't like to take his eyes off of them for very long--but the PT said this was normal for him since he's been laying down for so long. It's simply a bad habit that we need to break by making sure we always talk to him at eye level and put his mobile and other toys in front of him, not above or behind him. I was able to hold him for about 30 minutes. He fell sound asleep and then woke up fussy b/c he had taken yet another stinky poo. By this time it was time for change of shift so I said my goodbye's and enjoyed yet another 5 star meal in the Egelston cafeteria. If I never eat a bag of pretzels, a chicken sandwich and a Rice Krispie treat it will be too soon. Reid is now up to 24cc of milk which is being fortified with two different types of fortifiers and he's handling it well. In addition, all of his medications are now oral so there is talk about removing his central line at some point. The doctors are not in any rush to do this, but if there is not a need to keep it in then they won't as it can be another source of infection. His sats are remaining steady at 45%-50% oxygen and I am crossing my fingers for another night of a good CO2. Maybe if tonight's gas is good they will wean the pressures on his High Flow to 14 liters!

6:45am: Reid had yet another good night and a CO2 of 57 - the best he has had in about 2 weeks. He has discovered that his bed is no longer the only place he can sleep and gets fussy after he has been there fora little while. In fact, he slept almost the entire night in his new vibrating seat that we brought in over the weekend. I think he enjoys the change of position.

Anyway, about to board the plane and wanted to get a quick blog out there before I took off. Hopefully we will see another wean of the high flow again today --- will update you later after the doctors make their rounds.

12:15am: Why am I always up so late the night before I head to DC? Ugh. I have to get up in about 4.5 hours, so I will be nice and tired for my flight - that's for sure. Should be an adventurous visit to DC with all of the snow they have had... close to 30 inches.

Anyway, not much to report tonight. Kristen and I had a good visit with Reid. Tonight was the first time that I picked Reid up, put him in Kristen's lap, changed his diaper, his clothes, and when we were ready to leave - put him back. We usually have the nurse help us with all of these tasks, but I requested that we do it all on our own tonight... it was nice that we could do 100% of it on our own. He seems a little easier to keep happy and his saturations seem to be fairly steady during touch times.

I will leave you with a couple of pictures of the outfit I picked for him (take note of the little ears on his hat):