Thursday, April 30, 2009

NC Relatives visited

My aunt, uncle and cousin were visiting this week. Here are some lively pictures.

Friday, April 24, 2009

Alexis overnight

Alexis played with her toys until about 12midnight then she finally said, "Mom, I'm really tired, can I go to sleep?" And about 30mins later, she was sound asleep. We put on the CPAP and she slept pretty well. Thankfully she has major hearing impairments because we were in the "corner" suite (with three kids in close proximity). One kid was awake every 2 hours screaming, evidently he is a typical kid... very sad. So, I didn't sleep all that well. And then at 6am, Alexis woke up!!! So, evidently after sleeping most of the day yesterday and then a 6hr nap, it was enough for the beauty rest.
Otherwise, the floor doctors just "rounded" on Alexis and are hoping to send us home soon soon -- which in hospital time means before 12noon, hopefully we're faster than that.
Will write more later. Alexis is looking really good, taking her food and normal medications without any issue.

Thursday, April 23, 2009

Alexis awake

Alexis is awake after her surgery. With the versed, she decided that she wanted to chill out sleeping longer than her normal post-ops. She's doing very well. She's watching Discovery Channel (Mom's favorite show - How It's Made). She had a fun day, tightening her eye lid to help her open her right eye, repositioning her right eye horizontal muscle (to help her control her eyeball movement better - for better vision) and ABR/hearing test. The eye lid stuff went well, Dr Dagi is our most-frequent-doctor, she's been in 3 of Alexis' prior surgeries. The eye muscle stuff went well although her eye is very red. And then her hearing test confirmed what we already knew -- she needs her hearing aids. They did notice that today her right ear hears better than her left ear, but it's very variable with Alexis' hearing. But the main message is that Alexis is still in the severe/profound deaf range in both ears, which means she needs sounds to be at "freight-train" level for her to hear them. Otherwise, we're just chilling out at the hospital and hoping we have an uneventful evening of CPAP/breathing so we can get discharged tomorrow morning. We have a follow-up appointment with Dr Dagi and hope to go home right after that.
Matt has gone home to hang-out with little lady Jessica. Will write more later.
Catherine & Alexis (at our home away from home, Childrens' ICU)

Alexis into Surgery

Alexis has been taken into surgery. They used versed to sedate her so she was rather sleepy when she went away from us. Otherwise, we're having a good time here today. It was a light traffic day since it's school vacation week.
We're doing something fun today and you can see our progress at....

Enjoy! We'll let you know how things are going.

Friday, April 17, 2009

Our update

We've been busy -- managing household and careers and education for the kiddos.

Alexis loves school. She didn't love the cold that she had this week that really caused her to be "out of sorts". The teachers noticed that she wasn't normal silly Alexis. She did as well as she could have, especially since she didn't sleep at all on Monday night.

I'm loving my new job, it's a challenge. I have to think alot and I am learning a lot. It's a very good company and there are many things for me to learn and explore. I am also enjoying very much that at the end of the day we're helping kids / people just like Alexis get better medical care (in / out and around the hospital).

Matt has started golf season, so we'll be hearing more about golf in the next 4 months (as long as there isn't rain on Mondays). He's busy as usual at work.

Jessica is awesome as usual. She's so busy and curious. She loves the nice weather we've been having and explores the big backyard every day. She's doing well with her Early Intervention, although Sandy is seeing a lot of similarities between Jessica and Alexis. :-) I'm sure some of the stubbornness is straight from me.

Here are some fun photos from Easter Sunday. Jessica is very busy.


Monday, April 6, 2009

April Showers??

We're getting the monsoons here in Massachusetts.
Grandma and Grandpa Rose are visiting from NC. Alexis enjoyed spending a sunny Sunday with them. However, she had 6:50am bus departure from our house, so she didn't see the grandparents until 4:05pm when she returned from school.
Jessica loves having Grandma and Grandpa here, she runs around the house and they chase her around. She loves playing in the backyard and finding plastic Easter eggs. She's a good EGG.
Alexis still loves school. She has gotten accustomed to the schedule and seems that most days she doesn't take a nap on the bus anymore. She does take her weekend nap though. She is enjoying all of the kids at school and sometimes she tells us secrets about the teachers.
Otherwise, it's a very busy schedule. Alexis is in school full time. Jessica is in Early Intervention, she gets a visit once a week from Sandy (one of our favorite EI teachers). Matt is fine at work, very busy. Catherine is busy learning her new job, figuring out how to get to the cafeteria and how to limit drinking hot chocolate all day long.
Alexis will have surgery in April, if all goes as planned. She will have hearing tests done and her eye surgery. She'll definitely be in the hospital overnight, because of her breathing issues and general anesthesia effects. We don't know what time her surgery will start, but in the past they start with the youngest babies earliest in the day. Naturally, Alexis is now considered "old" (3 yrs!) and so we'll have to make way for the little babies. But, we're patient and we'll be entertaining Alexis with her water syringes until surgery starts! Hopefully she won't complain too much (that's what happened last time when surgery schedule got delayed so much).

That's about it! We'll be getting out the canoes and kayaks soon for all of this rain! But it makes the really sunny days even more fun.

Jessica, Alexis, Catherine & Matt