Wednesday, January 28, 2009

As the Snow Flies...

We've been shoveling through snow for most of January it seems. And then when it's not snowing it's 0 or 10, BRRRRRRR. I'd rather have it snow. At least then it's "warmer", nearer 32. We have been doing well, Alexis still has a chaotic schedule which is great for her, a little more insane for us.

Some Doctors updates: We saw Alexis' Orthopedic doctor on Jan 13th. At Children's Orthopedic dept, they are notorious for SLOW appointments. We were in and out in record time -- 45 mins. The fastest ever... no X-rays. Nothing really new to report on Alexis, which is great to have doctors with nothing new to report.
We saw Alexis' Eye doctor on Monday. She thinks Alexis is doing awesomely. Her vision is now 20/47 in the left eye (better eye) and 20/63 in the right eye (worse eye). Unfortunately, Alexis 'chooses' to ignore her right eye when the left is open. She is patched 3 hours a day and it is definitely helping strengthen the right eye, but not so great for working on stereo-vision (eyes working together to produce an image in the brain). So we talked over options with Dr Dagi. Dr Dagi would like to "revise" Alexis' eye brow lift. This will mean another surgery for Alexis, but we are confident that it'll give Alexis the best chance for preserving the vision she has in the eye and give her the best opportunity for long term use of her right eye. At the same time, Dr Dagi would like to see if there is any improvements that we can make on Alexis muscle control on her right eye. So... a lot to chew on. It's likely that the surgery would happen April 23rd. So, good news on the vision -- and still a work in progress on the right eye.

Regarding Alexis and 3rd birthday and going to SCHOOL. We went yesterday for Alexis' official "interview" at Perkins. They had about 12 specialists playing with her in the classroom. As expected, Alexis loved the attention and would perform fun tricks for them. We brought Alexis' "kaye walker" and she demonstrated her abilities! They were excited to see her and hopefully it means a "positive" acceptance of Alexis into their program. We will have to wait until next Tuesday for their official meeting to accept her and arrange a time for her to start school. I'm sure when they say we are ready, I will start to panic about sending Alexis so far away. After Perkins play group in the morning and then the interview, she didn't take a nap in the afternoon. So, she fell asleep at 6:45pm and Matt was able to CPAP her at 7pm (which is different from normal days where she plays in bed until ~9pm). So, that is a good indication of maybe her schedule when she's at school full time. Her day will be between 9-3 at school, but she will have to ride the bus 1-1.5 hours to get there and back. Hopefully the bus drivers know short-cuts and ways to avoid Boston traffic.

Otherwise, that's about all of our news today.... still snowing here. :-)

Catherine, Alexis, Jessica & Matt

Sunday, January 18, 2009

Belated Pictures with Santa

Here are some photos from Perkins Infant-Toddler Holiday Party -- with SANTA.
Alexis looks wonderful. Jessica had just fallen while trying to walk over to Santa -- so the crying isn't entirely due to Santa. But who really knows. A lot of funny faces from Jessica though.

Monday, January 12, 2009


We're back in Methuen after our first plane flights and family vacation to Colorado. Matt and I hadn't traveled together since June 2005 before Alexis was born. It was a great time away, although I didn't have access to my major addiction (the internet). Alexis and Jessica were saints on the trip.

On our way there, we connected in Cincinnati (on Delta). We had to get the kids up at 3:30am to get to the airport in time for the 5:35am departure. Alexis took a nap on the first flight because she was exhausted, especially since she didn't go to sleep until 11pm the night before. Jessica took a cat nap (~40mins) on the first leg. Then Jessica wanted breakfast. We had about 30mins layover in Cincinnati, thankfully the gates were very close. We did quick diaper change to make everyone happy and got onto the next plane. Jessica sat in the car seat and slept the entire 2.5 hr flight. Alexis sat wedged between Mommy & Daddy while we played interactive TV trivia game with the rest of the plane. We could even see who was answering which questions correctly and incorrectly, it was really awesome!! Naturally we had the high scores during one time.

When we landed in Denver, Alexis was all out of sorts on the time, she basically was a zombie and went to bed at 4:30pm Denver time. I don't blame her, 45 mins of nap after sleeping 4 hours the night before wasn't nearly enough sleep. Jessica ran around like at nut because we were staying with Gretchen (one of Alexis' friends) and Jessica thought the dogs were awesome (they were big big CATS to her). She kept saying "kitty-kitty" to the dogs. Very funny.

Matt had a nap so he got the *pleasure* (read as short-straw) to get up at 4:30am when Jessica woke up (which then woke up Alexis). Don't ask me how a hard of hearing child wakes up when her sister babbles in bed, but it does.

We had a fine time with the family. Alexis ate really well and did some PT, but overall it was a nice break from her hectic schedule of therapists at home. Jessica got to see a more scared cat and he tolerated her the best he could. Jessica enjoyed running around the house and figuring out who was in which room. She was a riot. Matt and I went snowmobiling and skiing. That was fun, but we both decided we are out of shape. Oh well.

For the return journey, our flight from Denver to Cincinnati was delayed. Thankfully Matt got in the line early with Jessica and got us booked on a DIRECT United flight back home. That was awesome. Jessica slept for 2 hours of the 3.5 hour flight. Then Alexis played in the car seat while Jessica ran around. Oh yeah, we also got the bulkhead which was great for Matt's long legs and the kids not kicking on the seats in front of them. Of course, I just have to put my feet on our luggage in that case.

When we got home though, one of our 2 bags did not return until late Sunday night. No worries since we had packed Alexis' medical needs in our carry-on luggage.

On Sunday we tried to unpack, laundry, recover and re-engage for a busy week.

On to today's news --- Alexis' IEP team met today to discuss whether she was eligible for Special Ed services. She is!!! This wasn't a surprise, but it is funny to me that she basically mets the requirements for nearly all of the Special Ed disabilities (excluding Emotional / Intellectual). But the best news was that the team recommended out-placement for Alexis. We are currently in the application process for Perkins School for the Blind Deaf-Blind program. This is our dream come true. Alexis needs the skilled staff in Perkins to work with her to develop communication, mobility, feeding and numerous other skills. We still have a sprint to the finish line to get her to Perkins by her 3rd birthday (2/8/09) but we are at least in the race!!!! :-) Of course, we're not out of shape for this work out!!!

Love to everyone,
Catherine (Matt, Alexis & Jessica)