Nothing Short of a Miracle

I'm posting a video below to share with you Jack's walking progress. It has been a long few years but seeing him do this makes me realize how much progress he's actually made, and how hard he works to do simple things we usually take for granted. I'm so proud of him!

Autumn and School

Jack's doing well at school, making friends and loving it! Every time I say the word "school" now he smiles, and when he sees his bus he starts laughing and kicking his legs like crazy, even on the days he is tired!

He's also doing well in PT. They want to get a walker for him at school since he's doing so much standing and has taken a couple steps while supported. I'm looking forward to hearing more about his progress there.

Here's an outdated but cute picture of Jack waiting for the bus one afternoon:

When it Rains, it Pours

Well, Jack's had five big changes in the last week and something seems to be making a difference in his gross motor skills already. The five big changes are:

1. Jack started school last Thursday at a different school from last year. Though he had summer school in this new building, it was with a completely different group of people. Now he has daily visits from his therapists, a teacher, special ed teacher, and his paraprofessional all working with him throughout the day. I loved his other school but it seems like this school takes a real teamwork approach to getting Jack to work on his goals, which is so amazing. It's as though there's a team of people getting paid to do what I did with Jack for three years. It feels great to have some of that responsibility transferred off of me and onto other people.

2. We started a brush and press program based on the Wilbarger Brushing Protocol. Every two hours during Jack's waking day, we're brushing him with a surgical brush and then doing joint compressions. We've also gotten a hammock and started swinging him in it daily. This is all to try and meet some of his sensory needs that I've come to learn may be playing a big role in his lack of progress.

3. I started forcing Jack to do tummy time every day for at least 45 minutes. To do this I've had to hold down his leg when he 's on the floor or strap him to a roller board I made for him so he can't roll over. He's hated it but we're seeing the beginning of an army crawl when he's on the floor on his tummy. That seems like a lot of progress for one week!

4. I started a trial of a gluten-free, sugar-free, dairy-free diet for Jack. Other parents of kids with sensory issues have reported an improvement in their general sensory awareness or gross motor progress on this diet. There are no clinical trials of the diet that support this connection but I figured it couldn't hurt to try it, so that's what we're doing. The hardest part has been eliminating cheese from Jack's diet, we love cheese!

5. Jack started taking Trazodone at night to help him sleep, and every night since he's started *knock on wood* he's slept through the night, at least seven hours. Jack NEVER slept this much before.

The other huge improvement I've seen in the past week other than the army crawling is his walking. For the past couple of months I've been holding Jack up by his hands, forcing him to take the standing posture. In the last few weeks he's started moving his feet alternately, but not putting very much weight on them when he does it. He sort of hangs from my hands and moves his feet lightly on the ground. Yesterday, however, he took a lot of weight on his feet while doing this walking practice, even wearing his sandals in which he usually will not take any weight on his feet! I'll post a video of him doing this soon.

The Divine Comedy

TV relating to Jack's Life

Global TV Ontario just did a story in June on CME therapy and Teya, the girl whose story promted me to look into CME in the first place: http://www.youtube.com/watch?v=eM0Mk2zHKf8

Also, we met some new families at the Upper Northeast Regional Angelman Syndrome Foundation picnic in July, including a mother and daughter from New York who are going to be on Mystery Diagnosis on the Discovery Science Channel on August 10th at 10pm.

Mystery Solved

Well, we found out last week why Jack keeps getting pneumonias and why he's sick all the time--he's had a chronic sinus infection. He started at least four weeks of antibiotics last week and his dr. will check on his progress toward the end of those four weeks. He may need to be on them longer if it's not cleared up by then.

In the meantime, Jack's getting used to being on his feet again after a lot of downtime with his third pneumonia. Here's a video of him yesterday in his walker. He's really starting to get the hang of going forward in it, though he uses both legs at the same time!

Meeting a new family and more awesome CME

We got to meet a family from one of our Angelman email lists today who live in the area. The similarities between Nicholas, who is 7, and Jack were amazing. It was great to see what things he'd learned in his seven years and be hopeful for what Jack might learn in the future. Here's a short video of Nicholas and Jack playing in the grass, and a few pictures of them.

Jack is doing amazing things!

Ramon got Jack to do some really amazing things today. Besides sleeping well and not screaming through the whole therapy session, which are also amazing improvements, Jack has tolerated standing and "walking" with just support on his ankles. Here's one video from our early session today. You can't see it through the whole video but Jack is walking on two boards turned sideways that have a width of about 3/4" each!!

Toronto is going well

Jack's first therapy session with Ramon went amazingly. He didn't get upset at all and Ramon was great. He was so energetic and happy. He was so great with Jack. In bewteen the first and second sessions, we went to a semi-accessible playground I saw on our way to the therapy office. The playground had partially paved paths, but there were wood chips around the actual playscape. Jack enjoyed a slide for the first time by himself (without me holding him) and a swing, which he always loves. Here are videos of Jack having a good time.







sorry this one's sideways, I couldn't find a way to make it rotate and keep the whole video.

Toronto at last!

We've arrived in Toronto, safe and sound. We're in the same hotel we stayed at for the other two trips so it feels a bit familiar. It is pretty lonely though without another adult, I have to say! After we got in and had a snack, Jack "walked" with me outside of our sliding glass door, then back in. (I held his hands and shifted his weight for him.) Here's a picture of him standing and noticing the camera. Notice he's standing straight with me just holding one arm!!

Off to Toronto again

We're a little more than half way to Toronto today. We're going up for our third intensive session of CME therapy. Our first trip was just about one year ago and Jack has made HUGE progress since that visit. Before we went on that trip, Jack couldn't even sit up by himself. Now he can not only sit by himself but he can get from lying to sitting, and he can stand with just hand support. We'll be driving to Toronto today and starting the therapy tomorrow. So far the trip is going smoothly, Jack actually slept for about 7 hours last night (a record for him away from home) and he seems pretty happy and laid back! I think maybe he's getting used to being away from home more. Here's a picture of him last night in the big armchair in our hotel room.

Pond Thing

This past week, I walked down to the pond close to our apartment one day. And I saw the weirdest thing I've ever seen in a pond. It was some sort of large plant, floating in the pond, not attached to anything. The leaves were curled up so I couldn't tell what they looked like but the stem or trunk of this huge plant was like nothing I'd ever seen before. I felt like I was seeing an alien. Here are pictures I took when I showed Jack and Shippee the weird plant:




















After about an hour of searching on the internet that night, I found out what the mysterious plant was: it was water lilies! The huge trunk-like structure is the water lilies' rhizome, a root structure that usually stays on the bottom of the pond. For some reason this one had become dislodged.


On another pond-related note, here are some pictures of the 2nd baby turtle we found on our living room floor one day a few weeks ago:

Mystic Aquarium Trip

We took Jack to Mystic Aquarium today to celebrate his birthday. We invited another family with a child with AS along. Here are a couple pictures of them together. They both seemed to enjoy the exhibits, especially the one where they could put their hands in water and splash. Here are a couple of pictures.

School is Going Well

Every day so far Jack's teacher has written in our communication log that he's had a good day at school. She says Jack just loves observing the other kids. He's been wiped out after he comes home. Here's a picture of him today after he came home and had a snack.


In Jack's backpack today I found a picture Jack's classmate Arwen drew for him. Jack's teacher wrote at the bottom "Here's Jack. He's my best friend." which I'm assuming is what Arwen said. It brought tears to my eyes! Here's the picture. Notice his smile is so big it's practically coming off of his face, much like in real life.

Hitting with a spoon

This week at breakfast one day Jack figured out that a spoon can make a really cool noise when it hits a bowl! Hitting an object with another object has always been something very difficult for Jack. If you think about it, it takes a great deal of coordination to keep holding onto something as you smash it into something else. For months and months we tried to get him to do it with no success, but this week he just decided to do it on his own! Here's a short video of it.

School Starts!

Jack started school this week. He had a sick day yesterday but did well both Monday and today. The bus picks him up around 12:45 and drops him off around 4. He loves watching the other kids and his instructional assistant and teacher are adapting all of the activities for him, so he gets to participate in everything his classmates are doing. We're very happy with his school!

New and exciting things!

We got Jack's walker a couple weeks ago. It's a beautiful cherry red Rifton gait trainer that we get to keep! Since he's been practicing, he's taken a couple steps forward in it! It helps if we use plastic or chips bags as incentive. Here's a picture of Jack in it, after he took a few steps toward his prize.












We are saying goodbye to Jack's birth to three people this week. It's sad to say goodbye to the people he's spent so much time with and learned so much from. But I know he'll learn a lot when he starts preschool next Monday, on his birthday. It's scary but he'll be in good hands.

And, for the grand finale, Jack has been transitioning from lying to sitting this week! He did it once yesterday and THREE times today! I managed to catch it on video to share! This is a huge milestone he's been working on for months. GOOD JOB JACK!

Thank You Villari's Martial Arts

Thank you to everyone at Villari's Martial Arts, especially Ken, for organizing, planning, an executing the tournament fundraiser for Jack this past Saturday.

Villari's managed to raise over $2900 for Jack's CME therapy, enough to cover one whole trip to Toronto plus extra!


THANK YOU TO EVERYONE INVOLVED!!!!

Home again

We're finally home and Jack's doing much better. He still has the same lingering cold and I'm starting to get it now too, it's quite a doozy. He did well at the hospital off of oxygen for over 24 hours so hopefully the crisis is over!

Never a Dull Moment

Jack must have had some nostalgia over his first days of life this week because right now we're sitting in the ICU at CCMC. Jack's sedated and being given oxygen because he can't get enough oxygen when breathing on his own. Sound familiar?

After many tests the doctors are thinking he has a virus that has caused mucus to go down into his lungs and he has been unable to clear the congestion himself. He's being given antibiotics just for good measure and they're keeping him sedated so he won't pull the oxygen mask off his face, which he spent all day yesterday doing. They're going to try him on room air later and see if he's able to get enough oxygen that way. I guess it's up to him when he gets to go home!

Cute things we do when stuck inside

I found a video from a couple months ago of Jack exploring our bathroom with his walker. I'm not sure why, but he REALLY loves the bathroom. He gets excited whenever he's in it. The second video is from earlier tonight, and shows Jack doing his new squeaky voice that he's discovered.
Enjoy!

February Madness

Jack had his first seizure where we had to administer Diastat last week. Needless to say, it was a pretty awful experience and we'll be talking to his neurologist about adjusting his meds to try and prevent these breakthrough seizures.

Good news this month, our little friend Joshua from Belleville, Ontario was just diagnosed with Angelman Syndrome. We'd like to welcome Joshua and his family to the Angelman Syndrome community!

Good news today

We saw Dr. Seashore again at Yale today for a follow-up to Jack's positive genetic test for Angelman Syndrome. She took a look back at Jack's medical records from his stay at John Dempsey and went on to tell us something very surprising. She believes that the doctors at John Dempsey diagnosed Jack with HIE (a form of brain damage) because they were looking for a cause of his high tone and behavior in light of having a breathing problem at birth. However, Dr. Seashore thinks that Jack's MRI and CT scan were actually in the range of normal for a newborn baby. She expressed how difficult it is to read these scans on such a young infant. She went on to say that she does not think Jack EVER suffered any brain damage.

What an amazing piece of news! It is AMAZING to think that my body didn't cause Jack any harm.

Dr. Seashore told us that the cerebral palsy diagnosis was essentially null and void. Jack has Angelman Syndrome. Period.