Happy New Year!!!

At Elle's month 2 appointment, her she checked out by the docs as looking great. Her lymphocyte count is slowly increasing to 175 and she is almost 16 pounds-on track with Maddie's recovery. We started her on solids, and on day 3, she went so far as licked her lips and smiled. What an eater! I tasted the organic apple, carrot, and parsnip pureed combo, and it was pretty tasty. Yesterday, we had sweet potatoes - not such a hit. She has started to always try to roll-over and is very vocal and opinionated these days...I am wondering if she learned this from big sister or if it is just innate.

Maddie is as energetic as ever. Since Fernando's mom has left and the Au pair has been on vacation, she has been speaking more English and Fernando said her Portuguese pronounceiation has gotten worse. I think it is because my Portuguse that I speak to her is so bad. The little comidian is currently obsessed wtih taking off her pants and diaper. Fernando fed up after days of this fixed that by putting her in overals. Now we know why we received 10 pairs as hand-me-downs. I am getting Maddie tested for speech therapy on Monday to see if her delay is due to being bilingual or due to being tube fed. In late March, we are going to get her tested to see how her immune system is working. If the tests come out well, then we would stop all of her medications in June.

We spent all day opening Christmas presents, and we were exhausted. Maddie kept yelling a-bi-cah and trying to climb the baby gate protecting the tree (open in Portuguese is abrir). It was fun. My mom came over and brought lunch. Christmas Eve, Fernando managed to cook a 3 course meal (oysters, poached cod, and lamb) even with Maddie running around trying to get into the cabinets and garbage.

More pics

In support of Movember, Elle and I posed. However, Elle just kept trying to lick her stache. Below, Maddie is practicing to be a doctor on her cell phone.

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!