Day something...and we are home

We made it home - alomst 2 months ago. The docs let us leave Nov. 10 without even an arm wrestling match. Apologies for the late post. The girls are doing great. Maddie had a few days of extreme jealousy but is starting to play more with Elle - at least we make them play together (see video below). Fernando's mom left us this Dec. 1, so we stopped eating well...and almost had to start wearing dirty clothes. We are both back at work which is where we get rest from the chaos of 2 babies at home.

Day +21–When we Learn we can Pack our Bags

 

Today we talked with the doctors and we’ve got our “get out of jail free” card! Elle’s levels have hit a stable plateau which will trend for a couple months as it makes a slow rise to relatively normal levels. We can keep watch on things now back at home in Seattle.

We will be leaving on Wednesday which is not too soon since Elle is getting really tired of turning into a Jedi for self-entertainment. She also consistently passes out on the bottle at the mere view of the camera. Fernando hasn’t been outside the hospital building in 12 days and out of the room for more than a total 2 hours during the same time. It’s sort of like living on a boat without ever being able to jump in the water.

 

Maddie's Day + 438

So Maddie was Princess Leia for Halloween. Someone thought she was a white angel because she refused to wear the cinnamon buns. I was wearing them hoping that people would figure out her costume. However, I just looked weird while Maddie still looked super cute. We went trick or treating with the new Au pair, and Maddie wouldn't stop taking candy and putting it into her bag. So we only needed to stop at 2 houses.

I will say that life with a grandmother and an Au pair is pretty fabulous. (Sorry Fernando.) If I had full time help like this per kid, I would have more.

Day +17

 

Elle and Fernando moved to a new room recently. There was a banging noise coming from the bathroom water pipes. Thuy had put up with it for over a week but Fernando broke down and told the charge nurse he was “going crazy in here”. We had mentioned the noise for 2 weeks but it takes a person to say they’re losing it to get things done. Evidently it’s bad form if you start off on the pediatric floor and end up in the psychiatric unit. Got to remember that one! As of now they still haven’t fixed it and Fernando can still longingly hear it at night through the walls.

Elle’s blood results may have hit a bottom plateau which is great since it means we’re getting closer to going home. She’s happy, very squeaky and doing lots of tummy-time.

Day +11 Halloween at UCLA

 

Today the hospital celebrates Halloween by having the kids who can move around go around to the nursing stations to trick or treat. For those who can’t leave their rooms, a reverse trick or treat is done by having volunteers go around to the rooms. Since Elle doesn’t have teeth and can’t eat chocolate, Fernando had to eat on her behalf. He may lose his teeth when he gets older.

Elle used her powers of the force to bring out the little Yoda in herself and charmed the nursing staff in the process. The Force is very strong with her as proven by initial results given to us by the study Doctor that Elle has the highest ADA enzyme activity in cells re-infused back into a patient. Now that means the cells that have been modified with the new ADA gene are working very well. Could that be comparable to Mitaclorians in Jedi? Too soon to say. In about a month there will be a test to see how many of the new cells actually engraft. Long live the Rebellion!

 

Day +10

 

Best quote today from one of the docs was “ You have the healthiest child on the floor!”. Sometimes I think they’re bored with us since there isn’t enough to teach the interns. This is a teaching hospital after all.

Elle is doing well and progressing through the steps needed to leave the hospital. Her blood levels have gone down a bit as expected as she rides the neutropenic see-saw and makes a B-line for the “safe” zone.

Today Thuy flew back to Seattle to get some rest, get out of Groundhog day, and be reminded how Maddie is a handful. Good thing Fernando’s mom is taking care of her and we have a nanny. It’s 3 to 1 right now, so it’s a fair fight. Fernando flew in yesterday to take over duties with Elle.

First thing to do was get Elle into shape with some tummy-time – how cute is this?

 

Day +6

Aunt Emi and Al drove down from the Bay Area to help babysit me. Al (AKA the baby whisper) watched Elle sleep to allow me to go and breathe some non filtered hospital air and drop off the laundry. I would call it fresh air, but I am in the middle of LA, you know. Elle was great for him and only cried 3 times. Each time after Al calmed down from the panic, he just put her pacifier in her mouth and patted her butt (her off switch). She fell back asleep all 3 times. Emi brought me food from the outside world which was wonderful. Elle and I both cried when they left. Elle enjoyed the visit to play with someone who wasn't me.
Elle continues to do well and be quite the trooper. She still has digestive issues and lots of gas which is quite painful for her at times. I hope this is the bottom and we start to come up. She still continues to be super cute and playful. It's amazing to see the transformation out of the "4th trimester." She has mad skills now of grabbing her toys and bringing them to her face. She was sitting on Emi's lap at a 45 degree angle and pulled herstlf to a sitting up position - we were all amazed. They grow up too fast.
I've asked Fernando to post some pics of Maddie. So, if you are wanting to see those, please send him an email to him. I miss her loads and can't wait to see her next week-though I am equally sad to be away from Elle.