The year so far...

This has been a long year for Jackson.  I would think at 11, new diagnoses would be less and less. However, he has been diagnosed with epilepsy, dysgenesis of the corpus callosum, pituitary hypoplasia, growth hormone deficiency, hypothyroid, allergies to pretty much all nuts (it used to just be peanuts and milk).  All of this since February. We've added two new daily meds, with the potential of daily growth hormone injections, pending insurance approval.  He had 11 teeth pulled, 8 baby, the rest adult tooth buds.  The baby teeth weren't coming out on their own, and the surgeon determined they were fused to the jaw bone.  Three ED visits for croup and various other illnesses.  Whew.

And, somehow, he's relatively unaffected by everything.  All that matters to him his the iPad, Alphabits, music, Legos and the new shoes he got yesterday.

Object du Jour: iPad, I can hear him in the other room asking Siri to show him a picture of Curious George at summer school.

Song Du Jour:  Radio, Radio by Elvis Costello

Done?

I went to the pharmacy at the hospital yesterday to pick up Jackson's prescriptions (only two of the three were ready and I have to go back again today, I hate that parking ramp!)  Anyway, the lady in front of me was talking to the pharmacist saying, "We're done!  He rang the bell today and we're finally done!"  I just stood there thinking, I wonder what that's like to ring a bell and be "done."  It made me remember that this life with Jackson is forever, we won't ever be "done."

The times that I've volunteered for hospital committees and to talk about my experiences as a parent with a child with special needs, I've realized that the hospital often wants to share stories with the public like the one above - This bad thing happened, we fixed him right up and sent him on his way.  All done.  Its all about the outcome. Our story is that we will be at Children's until he's ready to transition to adult care and we will have another beginning, but never be "done."  (I'm not saying that we haven't gotten great care, but there's not a whole lot of interest in saying, we've got these families that have been coming here sometimes a few times a month for 18 years and there's no "done" in sight.  That doesn't sell a lot of papers, if ya know what I mean.)

I wouldn't change things (maybe I would to make life easier for Jackson, but not for myself), but it's been a long 11 years with no "done" in sight.  And all told, he's still a pretty cool kid.

Object du Jour:  The box from the Minecraft Lego set.  The box is way more fun than the actual Legos.

Song du Jour:  A new feature here on J's blog.  He falls in love with a song and we listen to it until I can't take it anymore and he moves on two a new one.  Right now it's "Jungle Love" by the Steve Miller Band.

#endscene

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.

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.

School!

Jackson just loves school!  The pic above is from his speech therapist, J hard at work.  I appreciate that J adores school, I don't, however like being woken up at 4 am on Saturdays and Sundays because he wants to go!

We got Jackson into neurology tomorrow and his EEG will be done right after the appointment. I was told to put him to bed two hours late and wake him up at 2 am. It's going to be a rough night. Here's to hoping we get some answers and that it's nothing to worry about.

ETA:  I woke him up at 2, as instructed.  Wow.  It's now 7 and the sleep deprivation for both of us is kicking in.  It's going to be a long day.  Lots and lots of coffee required.

Object du Jour:  Mommy's phone.

Uptown Funk

Jackson's new favorite (to ad nauseam for me) song.  He's pretty sure Bruno Mars wrote it for him because it contains the phrase "JACKSON, Mississippi."

We had Jackson's IEP this week.  I could not ask for a better team for him.  We are very lucky in that regard.  He's spending most of his day in the regular classroom, spelling like a fiend at grade level, reading at a first/second grade level and navigating the school with less supervision needed than ever.  His peers are treating more like a part of the class, helping him when needed and he got invited to his very first classmate birthday party ever!

At the trampoline park for the party!  I thought he would hate the noise, but he loved the jumping!

On the icky news front, school thinks Jackson may have had a seizure yesterday.  Rapid eye blinking, non-responsive, odd noises, lasting about 30 seconds.  Talked with the ped who is sending us to neurology for an EEG.  Still waiting for their office to call with the appointment time.  I haven't seen anything, here's to hoping it was just a fluke thing...

Object du Jour:  35778 Craftsman garage door opener.  Good thing I'm a quick study when it comes to garage door opener model numbers.

I'm still here!

Wow.  It's been a really long time.  I find myself spending more time writing on Facebook than I do here.  Let's see what I can remember from the last 6 months...

Jackson turned 10 in July.  I cannot believe that.  I felt like I was going to be pregnant forever and he's 10.  Whoa.

He started 4th grade.  Absolutely loves school, his teachers, his aides and the routine of it all.  He gets his daily schedule every morning on a post-it note that he calls "The Square Schedule."  He lives and breathes that by that thing.

The best thing happened this week:  Jackson got his first every birthday party invite from a peer at school.  It's at a trampoline park.  I'm not sure Jackson will love it, but he's going to go!

No croup episodes (knock wood) so far this Winter.  He's gained 5 pounds due to a formula change, maybe that's it.

I'm continually amazed at how Jackson changes, seemingly daily.  He's been more conversational, more huggy, and more interested in food. I was eating some potato chips and Jackson said, "Jackson wants to eat one."  (He still talks like Bob Dole, I don't know when we're going to shake that.)  But, I was shocked he wanted to eat one.  I gave him a chip, he took a small bite and then asked for a bowl of his own.  We went to Target a few days later and Jackson saw an endcap of the same type of chips we had at home, marched over and threw a bag in the cart and said, "Take it home."  Randy and I looked at each other and then bought the chips.

Jackson has learned to swear, in his own Jackson-y way.  When he gets angry at someone or something, he calls them a Dent.  If Daddy tells him no, he's a Dent, if the TV is too loud, it's a Dent. When he's mad at me, I'm a Pub. No clue where those came from...

Jameson has started first grade, is reading like a pro and missing his two front teeth.  He turned 7 last weekend (again, how the heck did that happen?)  We spent the day in Chicago at the Museum of Science and Industry and went to dinner downtown at the Rainforest Cafe.  Volcano!  In this pic, taken Saturday, he still had both front teeth, yesterday the other one went.  The Tooth Fairy brought him a super sweet Sacagawea golden coin.

In June, we got a new (another) cat, Franklin Thunderberry Boogie Wondercat.  He's a big black fuzzy guy with a white patch on his chest and tip of his tail.  He is the sweetest boy.  Jackson uses him for a pillow.  We all love him to pieces except Dixie.  She's still mad she wasn't consulted on this decision.

That's all I got for now.

Object du Jour:  Frozen waffles, garage remotes and the iPad.