Tuesday, April 15, 2008

Greetings from not-so-sunny Florida!

Wow, what a trip so far! After an unexpected upgrade to first class on the flight (yay!) we arrived on Saturday to a sick baby and sick Grandma (boo!). Grandma Phyllis was already sounding pretty rough when we got here and Joey was just starting to feel it. Grandma is now on the mend, but Joey is right in he thick of it...we had Pukefest 2008 on Sunday night, and part two was last night. Poor kid is just not himself. Last night he was up until almost midnight, and this morning he woke up around 7am crying and sounding really stuffed up, but I rubbed his back and managed to get him back to sleep, where he remains right now at 9:30am. I think today will be the worst day, and hopefully things will improve enough tomorrow so we can take Joey to the Tampa Aquarium, which was supposed to be our highlight of the trip since Joey loves fish so much.

Sunday wasn't a total write-off, we took a long walk to a bird sanctuary. Joey didn't seem all that interested in the birds but he loved the long walk there and back. We stopped at a park on the way back to get in one of Joey's favourite activities....swinging!

Joey and Daddy at the Seabird Sanctuary

Stopping for a swing in the park

And yesterday we went for another long walk, first on the Redington Long Pier and then to John's Pass, the best tourist-trap in the Southern USA. Store after store filled with expensive and wonderfully tacky mugs, beach towels and shot glasses.

At the Redington Long Pier

The weather hasn't been terrible, but its not the best either. It was super-hot on Saturda when we arrived, the beach was packed. Sunday and Monday were cooler but still shorts and t-shirt weather. Today is very cool, it can't be more than 60 degrees out there. It's supposed to start going back up tomorrow and by Friday should be back in the 80's again. Today we're planning a little outlet shopping in Ellenton, about 40 minutes away. We're going to wait and see how Joey is when he wakes up to decide if he'll stay home with Grandma or come with us for his second-favourite activity...zooming through racks of clothing in his stroller!

P, J & J

Wednesday, April 9, 2008

Some Sad News....

I just received the following email from the Angelman Syndrome Foundation:

It is with a deeply saddened heart that I inform you of the death of Dr. Joseph Wagstaff. Joe died early Tuesday morning during a fall while rock climbing in North Carolina. Very little information is available at this time and we will keep you informed as to any new information we may have. http://www.charlotte.com/109/story/572791.html.

Joe has done so very much to support AS families and the ASF—words cannot begin to describe how very much we will miss Joe. We have been so very privileged to know and work with Joe over these many years. Please keep his family in your thoughts and prayers.

Dr. Wagstaff is the doctor previously referred to on our blog as "Dr. W." He was the doctor who responded to my email with calls to me in person, and went out of his way to call the lab that performed Joey's microarray analysis to clarify what was found. He was obviously a very kind man dedicated to helping those touched by Angelman Syndrome...he had absolutely no obligation to help us and did so out of the goodness of his heart. Coincidentally Dr. V just sent us a letter earlier this week summarizing the events of the past few months, and she had a list of follow-up items she was going to deal with. Number 5 on her list was to contact Dr. Wagstaff in person, since he was so knowledgeable and considered an expert in regards to Angelman Syndrome. How tragic that we've also lost this wonderful medical mind.

I am deeply saddened by this news. Please keep his family in your thoughts and prayers.

Monday, April 7, 2008

Happy Birthday Joey!

It's hard to believe but Joey turned two on April 1. It's been a crazy couple of weeks so I haven't had much time to update the blog, but the little guy is now in sunny Florida so Jason and I have had a bit of free time.

When Joey was born my very thoughtful friend Lori (who was also our labour coach) bought a giant stuffed bear for my Mom. We didn't understand why at first, but the card attached explained it all...it was to be kept at our house and we were to take pictures of Joey with the bear to send to my Mom, who lives far away, so she could get some perspective on how much Joey has grown. We took pictures of Joey with his bear every month for the first year...it really shows how much he has grown! Here is the first picture we took of Joey with his bear at 6 weeks, again at one year and then the one we took most recently at 2 years old:

At one year Joey wasn't able to sit up on his own, he really needed the bear to support him. What a difference this year! As I stated taking the pictures he was almost getting up on his knees without support and the actually got down on the ground and crawled over to the camera!

We think Joey *knows* he isn't a baby anymore...we had to keep a very detailed food journal for three days because we were attending the feeding clinic at Sick Kids in Toronto on Monday the 31st. The day we started the food journal Joey suddenly decided he didn't want to drink his PediaSure from the bottle, which for the past 9 months has been 90% of his overall food intake. So, we decided to try and feed him with a spoon...complete shock, Joey WANTS TO EAT!!!! Since last summer the only things Joey would eat was yogurt and pudding, and rarely did he have more than one serving a day. Suddenly he was eating chicken, vegetables, fruit and the dreaded beef, which he has never really liked. Of course these are all baby foods, not adult table foods yet, but we don't care! Since turning two there have actually been several days where Joey hasn't had even an ounce of PediaSure from his bottle, which has NEVER happened before. Needless to say we are extremely excited. We didn't find the clinic at Sick Kids all that helpful (actually, it was a colossal waste of time to be honest) but we also have a dietitian that comes to the house, and she came over on April 2nd and spent almost 3 hours with us, reviewing Joey's food intake, calculating his daily caloric needs and coming up with suggestions on how to fortify his foods without changing the taste and texture. Joey needs about 950 calories a day to maintain growth, and when we added up the three days of solid food he ate it was an average of almost 1200 calories/day! We're hoping this will translate into some weight gain very soon....he was 20 lbs 8 oz when he was weighed at the beginning of February and was the exact same weight as of March 31st. If he doesn't gain at all, or if he loses weight, when he is weighed next on May 5th we will definitely have a problem. But for now, we are just thrilled that he is back to eating real food. As a Mom it is very disheartening when your kid won't eat. Even though logically I know it's not my fault, I can't help but feel that in some way I have failed in my job as a mother. Mothers are designed to feed and nurture their children, we're born with the ability to produce the perfect food for our children. To watch your child struggle to eat, and not be able to do anything about it, is extremely tough. Joey is very thin, when he is in just a diaper you can count all of his ribs and vertebrae by sight. When I take him swimming sometimes I can see and feel the judgemental stares from the other mothers, probably wondering if I'm not feeding my child properly. I've even had people approach me and say "oh my God, he's so SKINNY!", and while most people don't mean any harm with their comments, it is just as hurtful as if someone said "oh my God, he's so FAT!" It's funny, most people wouldn't dream making a comment about an overweight child, but an underweight one seems fair game. Okay, now I'm rambling....

So, Joey left for Florida last Friday with Grandma and Papa Roy. We're in contact every day by phone or by webcam, but I am starting to ache a little bit to give him a big squeeze. Jason and I leave on Saturday morning to join them for a week and I can't wait! Apparently the weather is agreeing with Joey and is continuing to eat well. Hopefully it has the opposite effect one me.....

Pamela, Jason and Joey