Halloween Party

Jack had fun at the annual MOMS club Halloween Party at the Willington Library. He was dressed up like a doggy and played the part swimmingly! His favorite part of the party was getting to eat a very sugary Halloween cupcake. He cried when it was all gone! It reminded me of GIR on Invader Zim... "I miss the cupcake..."

Count Your Blessings

My thoughts and hopes are with a family in Burlington, CT who have a child in need of a liver and kidney transplant. He has a rare genetic condition. Read more about little Dylan here: http://dylan-ourlittlepickle.blogspot.com/

Jack loves Christmas lights

I put up some new Christmas lights in the kitchen yesterday, not because I like Christmas, but because I like lights. Jack apparently liked them even more than I do, as he spent the entire time at dinner looking up at them and singing at them! I had to get it on video, it was hilarious!

October happenings

Jack really enjoyed some leaves last week, without trying to eat them for once...












Jack stood by himself (without my hands on him) for the first time ever! He was wearing his AFOs and holding onto his toy rack for about five minutes. I managed to capture a small bit of it on video before I got too scared to not be ready to catch him. If you know Jack you know this is huge for him! (Sorry the video is sideways)

Questions and more questions

About a week ago, a mother contacted me on YouTube to comment on how similar our children looked, in the way they move, their mannerisms, and in their general appearance. This woman's child has Angelman Syndrome.

Angelman Syndrome is caused by a non-working gene on the maternally inherited 15th chromosome. Many times the gene has a deletion or incorrect code, which causes the protein the gene codes for to not be made properly. You can read more about Angelman Syndrome at http://www.angelman.org.

I've been researching this syndrome since the mother contacted me, and Jack's symptoms fit the Angelman Syndrome symptoms perfectly. Jack's doctors all assumed his symptoms followed from his brain injury, but there are a few discrepancies I think they may be overlooking:

Jack's brain injury was a PVL and because of the low severity of it, it was predicted that it would only cause him gross motor delay. However, Jack is globally delayed.

Jack has very very fair skin, hair, and eyes. Shippee and I are rather fair, but neither of us have light blonde hair. Lack of pigment is also characteristic of AS.

Jack has an unusually happy demeanor, he is excitable, and he is hyperactive. These symptoms are not common in CP but are symptoms of AS.

Jack LOOKS like a child with AS. It could be a coincidence, but he has a wide mouth with wide teeth, a wide face, wide nose, inset eyes, and a prominent chin like many kids with AS. See for yourself, check out these videos of AS kids: http://www.youtube.com/watch?v=-bCbZvC6LqI, http://www.youtube.com/watch?v=cFLHjnjwCag, http://www.youtube.com/watch?v=9L224ndGqH0, http://www.youtube.com/watch?v=-smToUcC-pw, http://www.dropshots.com/egosch#date/2008-10-11/00:43:59.

What do you think?

Jack's Diagnosis and Background

Jack is two and a half. He was born via emergency c-section on April 6, 2006 and immediately hospitalized for meconium aspiration syndrome. During his three week stay in the NICU, he was given a neurological evaluation because of his irritability. He had high tone, an ultrasound that showed no congenital brain malformations, and an MRI that showed slight brain damage due to lack of oxygen. A neonatologist later told us that based on that MRI, the brain damage seemed to be slight and he termed it PVL (peri-ventricular leukomalasia). This doctor estimated that the damage would only affect Jack's gross motor skills. At four months of age, Jack's neurologist noticed he was not meeting his milestones and Jack was enetered into the birth to three program. At one year of age, Jack was diagnosed with cerebral palsy, though which type he had was unclear. Around age two, Jack's neurologist confirmed that Jack probably has ataxic cerebral palsy, with slight spasticity in his legs. This is what Jack's OT and I had suspected.

Jack is globally delayed by at least one and a half years.
Jack is a happy little boy who continues to progress, at his own pace! We're very proud of him.

New to this...

So I decided to set up a family blog. I guess it'll be nice to let the friends and family we don't see very often know what's going on in our lives!

I'm trying to justify this... I still have mixed feelings about being a "blogger".