What I do at School (by Alexis)

First things first, I drive myself in, they get me off the bus. I got my driver's license at 3, evidently anyone can drive in MA. It's not required that I can see over the steering wheel. Although, I could go a lot faster if I could reach the pedals.

This is me eating breakfast too bad my mom is so lame at posting pictures that I'm sideways.

On occasion, I get to play with scissors. I'm not really sure why I have scissors and a mouse stuffed animal, but I enjoyed the scissors.

I had to read something to Bridget. She's fabulous, I have this funny look on my face because they were taking my picture.

And the best photo for last, sometimes I just have to take a nap at school. I have an exhausting day, getting up at 6:30am every morning, having a full day of school. Yep, I find a time in my day to just chill. (Again, I don't really sleep sideways, it's just my mom posting the pictures sideways).

Alexis on Perkins website

So our superstar Alexis is on the front page of the Perkins website!
It's a great video describing a Communication Portfolio that parents, kids and educators can use to describe the kids and their progress.
The website is: http://www.perkins.org/
You can see a picture of Alexis here-- (she's the small link at the bottom right)

Alexis and Jessica

We took pictures last weekend at the condo, the series speaks WORLDS about how expressive Jessica's face is.
I was taking the pictures, which is why they are so lame. Matt was giving Jessica some "coaching", "reminders", "pointers" to stay seated, look forward and not to bother her sister.
You can see the results. She is definitely MY daughter.
Catherine

The day before School

Alexis goes back to School tomorrow. Technically this is her first full year of school. She loves school. I'm not sure she's going to love the 6:30am bus (but neither are her parents). I'm sure this week will be a struggle rejoining the normal school week routine, learning her new schedule and readjusting to her hectic schedule.

Jessica also starts "School" tomorrow, full time daycare at our local YMCA. It'll be good for her to see and be around other little kids.

We wanted to post something quick and short because the VIDEO describes it all (I think).
Alexis has made a lot of progress since school ended in July -- WALKING. Yes, I have to hold her hands and navigate her to some extent, but she's doing the rest of the work.

I hope you all will enjoy it.
Catherine

Hi All....

Been busy couple of weeks. Back from Chicago. Hanging out in Boston or New Hampshire. Otherwise, going to work, keeping the kids safe and trying to make sure that we remember to do basic needs. :-)

But in the past 2 days, we've been quite busy. Jessica had her follow-up 6month review for Early Intervention. She still qualifies for EI, and here are her scores (she should be all at 25months-her current age): Self care 20months, gross motor 23months, fine motor 21months, social 27months, cognition 26months, receptive language (listening and using her hearing to do things): 23months, expressive language 12months. So basically Jessica is caught up in most all areas except now she's 12months behind her age in EXPRESSIVE LANGUAGE (that is talking). It isn't great news, but it "jives" with what we observe, which obviously means we agree. We will continue Early Intervention and hope that her increasing time in daycare will help her improve in this area.

Today, we had 2 sets of appointments for Alexis. First in Boston for 8am, then in Waltham for 10am. A bunch of silliness if you ask me. But at least we got to both appointments in time. The first appointment was to meet with the Neurology/Sleep Clinic doctors about Alexis' sleep apnea. The doctor was in a seminar until 9am, so that was a real trail on my patience. Otherwise, he wants us to follow-up with an EEG (to check abnormal spikes he sees in her brain activity), follow-up with CPAP usage/fittings, follow-up with Craniofacial doctors at Children's, and probably something else that for sure we can't remember and hope that his report will come out to us quickly so we can do all of the things right.
The second appointment was with Dr Terrell Clark, she is a psychologist that works with Hearing impaired kiddos. She helped to get Alexis in her right placement by describing the educational environment that would be ideal for Alexis. So, this was our return visit (9months later) to see how everything was going. She and Denise (SLP) are hoping that Alexis will develop some more pretend play and symbolics for more than just toys (like using pictures to choose foods, choose what she wants to do, etc). Yep, yep. And it was HOT today.
Alexis and I came home and literally rolled around on the floor after those appointments.
Now both girls are exhausted (already in bed for nearly 1 hour) and I'll be joining them very very soon.
Take good care,
Catherine, Alexis, Jessica & Matt (and the two hot furry cats that were sunbathing in the sun to get even hotter... silly cats)

Where have we been?

Well, it seems that we are quite late in posting anything to the Blog!
We went to Chicago for Charge Conference. The Charge Conference was basically 700+ people that are either have CHARGE Syndrome, are the parents of someone with CHARGE syndrome, family of someone with CHARGE Syndrome or professionals (teachers, doctors, researchers) affiliated with CHARGE Syndrome.
It was an action packed weekend!
For the parents, action packed days of lectures / information sessions.
For the kids, action packed days of play group.
Meals were provided and a ton of entertainment! One night they had a social hour, another night CHARGE Idol, another night Carnival / Dance Party (and Rachel Coleman from Signing Times).
It was all-around-exhausting!
The kids sort of adjusted to the time zone but they were asleep about 2 seconds after they were put in their pack-n-plays each night. And Jessica HATES sleeping in a pack-n-play and there were no complaints from her. Exhausted!

Many people have asked why we went to this conference....
It a lot of ways it's probably confusing and in other ways, it makes perfect sense.
1. Most of you know already that Alexis is "undiagnosed," genetically speaking that is.
2. Alexis has a lot of similarities to the kids with CHARGE (deaf-blindness, limited mobility, food/eating problems/swallowing difficulties, g-tube feedings, kidney difficulties, etc)
3. Alexis' parents (us) have a lot of similiarities to the parents of CHARGE kiddos (dealing with educational issues, medical issues, teaching a toddler how to eat, teaching a toddler how to walk when they don't balance well, teaching a toddler how to talk even though they don't understand clearly).
4. Alexis' family is the whole world. Meaning, there is a popular saying, "It takes a village to raise a child." Well, for Alexis, "It takes the whole world to raise a CHARGE child".
So over the past 6-9 months I've been on the CHARGE email list. It truly has been a source of strength and family network beyond anything that I have ever found otherwise. Mostly made up of mothers, these mothers have been through EVERYTHING. Unfortunately, more trials and tribulations than normal people should go through. But fortunately, they are a wonderful group of ladies that want to make sure others can learn from their experiences. As well, there are many people with CHARGE on the email as well, which is a major source of inspiration. So, these folks are my WHOLE WORLD, helping me navigate the path for Alexis.

So, what did we get out of the conference? (I probably won't do this justice)
1. Face-to-face contact with my other CHARGE families. I have followed many of them on their family blogs, it was GREAT AWESOME SPECTACULAR to hug them and meet their beautiful children!
2. Adhoc interaction with leading medical researchers in CHARGE to help determine if Alexis has a genetic syndrome (there was one vote for 18q deletion and another vote for "not-CHARGE" based on looking at her hands, "she doesn't have CHARGE hands".)
3. Whether or not Alexis has a different genetic syndrome, we are STUCK with CHARGE. These people are our family, they get us, they understand our struggles, they cherish our children, they support our dreams, they believe in us and know how difficult each day is. So, we are happily STUCK with CHARGE, because the family reunions are awesome.

So, when is the next CHARGE Conference? 2 YEARS from now! In July, In Orlando Florida. It will be even more AWESOME than this year, because we will get Alexis ready for her live performance (I don't know what she'll do, she plays a mean piano and does a great boogie). Also, it'll be even more AWESOME than this year because every 2 years when they have the conference, it seems that it's grown by 20-25% each year. So, there will be even more families at the conference. And FRIENDS AND FAMILIES are welcome to attend.

So, I will get to bed now because I have to work tomorrow.
P.S. Alexis is out of school for the month of August -- so PARTY TIME for Alexis!!! She did get her Progress Report from Perkins, she hasn't been expelled yet (just kidding!!)

Love to you all,
Catherine

New Awesome Perkins Video about Charge Syndrome

Perkins (Alexis' school) just released an AWESOME video series (6 brief videos, ~20mins total).
http://www.perkins.org/whatsnew/charge-webcast.html

The video talks about CHARGE, the medical issues for the kids, the educational issues, and tons of other things! And BEST EVER is Alexis' school psychologist is the STAR of the show. Pam Ryan is one of the main reasons us parents stay sane, mostly because she can offer us support, love and guidance as we as parents go through the education system with our dear children. She's an angel here on earth for us and we love "having to go to Perkins to see her" (we do see Alexis at Perkins as well).

Technically, Alexis doesn't have the genetic diagnosis of CHARGE, but we have adopted the diagnosis because (a) Alexis has a lot of the similar characteristics, (b) medical professionals do recognize "CHARGE" as a diagnosis and it helps starting the conversation, (c) the parent support group (via email) is absolutely spectacular and very helpful with advice and support on all topics (even recipes for things to make for our learning-to-eat-children)

So, enjoy the awesome video!!
Catherine