3.11.2015

March is Trisomy Awareness Month


In honor of Trisomy Awareness Month, all of the 4p parents are sporting these cool banners as our profile picture on Facebook. Another 4p mom, who lost her baby girl last year, started a website to raise awareness of trisomy 4p.  Each day for the month, she will be spotlighting a new kiddo with 4p.  Check it out here. Jackson will be coming up soon!  It's amazing to me how much Jackson looks like his 4p brothers and sisters!


Jackson's new favorite thing.  The "in use" sign from the bathroom at school.  He loves it so much his aides at school made a copy for him to bring home.  His other new big love...watching videos of people getting their casts off on YouTube.  The saw noise is getting really, really old.  

Neuro appointment tomorrow.  I have lots 'o questions.  Here's to hoping I get some answers!

Object du Jour:  See above.

3.08.2015

A week in the life of J...

Wheeee!  Because the short EEG in the clinic didn't show anything, neuro wanted to do a 24 hour EEG to see what they could see.  The tech came to our house to hook Jackson up and then he got a cool skull cap to wear for the day.  I asked the tech if they had one with skulls or flames; he didn't think I was funny.  Jackson did surprisingly well with all the leads on his head and the recorder he had to carry around.  By the next day, he was ready to get them off.



Then, a week later, Jackson ended up in the ED for croup.  



At the end of that week, Jackson ended with a fever and throwing up. The next day, we got Jackson's EEG results.  They saw too many spikes in his brain that lead to seizures, so they had him start Depakote that day.  We will do a gradual increase of the med over the next three weeks and then stop at his needed dose.  He will take the medicine for 2 years.  In the meantime, we will make a visit every three months to neurology to check his liver and platelet levels. I have a lot of questions for neuro at our visit next week. This poor kid can't catch a break.


On a positive note, we spent 3 days at the Wilderness in the Wisconsin Dells, which was a much needed break for all of us.  The boys got to swim and play and make new friends.  I got to sit in a beach chair with a tropical drink and enjoy doing nothing for a change.  Jameson made a ceramic coffee mug in their pottery studio.  He had a blast.  

Jameson started Sib Shops last month.  He loves it.  It's a place for siblings of kids with special needs to meet other siblings.  They do crafts, bake, have lunch and just chat.  I think this will be great for him because it's not always easy having Jackson for a brother.

Object du Jour:  endless garage door openers.