Happy Easter!

No chocolate bunnies this year, but Simon is keeping busy hunting for eggs.

Feeling better

Simon has been doing a lot of sleeping - not for longer than 2 hours at a time yet, but resting and healing. We got the go ahead from Dr. Smith to give him soft finger foods last night, and that helped a lot. He refuses to take any food by spoon or dropper or syringe, so it was pretty much just milk with a touch of rice cereal for the last couple of days, and the poor little guy was so hungry. So he's back to eating some of his favorites, avocado and squash and tofu.

He has several teary meltdowns a day still, he seems to just be a little edgy from lack of sleep and maybe some discomfort here and there. There are dissolvable stitches in the roof of his mouth and inside his nose, plus the unfamiliar feeling of having the roof of his mouth with no gap in it. He is also very clingy and snuggly, which is a change of pace for our little independent adventurer.

So far each day has been much better than the last, and although this surgery is more of a challenge for him physically than the last one, in some ways it has been easier. There is less medication to give him, and we don't have to deal with any apparatus like the nasal stents or the NAM. Plus we can distract him with toys and books, so most of the day he is happy as usual.

Home again

What a difference a day makes. Yesterday and last night, Simon was pretty out of it. We kept him comfortable with morphine until this morning, when we switched to Tylenol. As soon as he got the O.K. from Dr. Smith, he enthusiastically drank from his bottle. He was doing well enough by 1 p.m. that we were able to go home. As we expected, he was so happy to be out of the hospital and away from the IV and all the wires that he was cheerfully playing right away. He's still a little swollen and on a liquid diet for a while, but he's doing great and taking plenty of fluids.

Nancy surprised us by coming in at the last minute from Texas, and Simon enjoyed spending time with Teta as well as Mom-Mom and Grampy.

Surgery success

Everything went well, Simon did great. Today he is resting, and we'll try some food tomorrow.

Palate surgery tomorrow

A few pics from Simon's first passover seder last night. Yes, that is a cheerio on his face. No, it is not kosher for passover. His shirt says "Grandma's little matzoball".

We got the call from surgical scheduling this morning, we're on for 8:15 a.m. tomorrow morning. We will arrive at the hospital by 6:15 for registration. Simon usually wakes up between 5 and 5:30 a.m. anyway, so this actually fits right in with his normal schedule, except of course he won't be having breakfast.

We've had our pre-op meetings with the surgeon and the pediatrician, and Simon is good to go. He's completely healthy and all developmental milestones are right on track. He's just a few ounces shy of 20 lbs. He will probably lose some weight after surgery, since it will take him a couple of weeks to get back up to speed with eating. After that he will be on a high fat diet for a while to pack on the calories and pounds, he'll be having extra cheese and butter on everything, in addition to healthy fats from avocados.

The surgery itself will be around an hour and a half, not including prep time and getting him settled in his room afterward. I hope we'll be able to see him by 11 or so. Dr. Polley said we could expect recovery to be a bit longer process this time, starting with two nights in the hospital's Pediatric Intensive Care Unit. All lip and palate repair patients go to the PICU at Rush, so Dr. Polley can keep a close eye on them as they come out of anesthesia. We will be released when he is eating well on his own again.

Once again, thank you to everyone for keeping Michael's father in their thoughts and hearts.

Watching and waiting

We've been on blog hiatus recently, and it seems to be time for an update. At the beginning of March, Michael's father Adel (Giddo to Simon) had emergency brain surgery for a hemorrhagic stroke. The surgery was successful at stopping the bleed, but he has not regained consciousness since then. We have traveled to Galveston, Texas to visit him and be with Nancy twice now, most recently for two weeks. Michael worked remotely from there. There was one more emergency surgery a week ago for another bleed, but other than that there has not been much change one way or the other. We continue to watch and wait with hope for recovery and rehab, but this is a difficult time for all.

Simon is a great distraction for all of us, he has been happily toddling around, not quite ready to let go of the furniture. We have also been fortunate to spend time with the many friends and family who have come to visit or been in touch for support and kind wishes for his recovery.

We are home this week, and we will begin the series of pre-op appointments for Simon getting ready for palate surgery in 10 days. I know that Adel and Nancy so much wanted to be with us for this last big step in Simon's treatment, and their support has been so much appreciated. They are with us in spirit!