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.

Here we go again...

Jackson was a summer school on Monday when Randy went to pick him up.  As they were walking down the hall with J's aide, "the cough" started and the strider kicked in.  Randy calls me, swings by and picks me up and off to the Chateau we go.  These episodes seem to come out of the clear blue nothing.  One minute he's fine, the next, no air.  This time, I was a little more nervous because he was unable to speak in the car. The nurse we had in the ED said she could hear him before we even got through the doors.  After the racemic epi and steroids and an almost rebound, he was better.  Below is a breathing mask selfie and three attempts at an "I'm going home thumbs-up."

Genetics follow-up today.  Talked with the nurse practitioner about these episodes and she recommended seeing Pulmonary.  So, I will make an appointment tomorrow and see where we go from there.

Jackson will be 10! yes 10! next week!  I will post all the festivities after the fact.  

Object du Jour:  The 373LM.  A Liftmaster garage door remote given to Jackson by his 3rd grade teacher.  We don't leave home without it.

Wheeeee....

J has been a busy boy the last few weeks.  Two weeks ago, I was at a PTA meeting at school (I'm on the board, that's a whole 'nother fun story), anyway, Randy comes a bit late to pick the boys up and the meeting has already started.  He takes Jackson out of the room and heads down to the cafeteria to get Jameson from the kid's group.  A few minutes later, Randy and Jackson appear at the doorway of the library, with Randy mouthing, "I need you NOW!"  I come out and see Jackson bleeding like a fountain down the side of his head and all over his coat and shirt.  I call the principal out of the meeting and ask her to get me some supplies to clean him up with.  She wants to call an ambulance; I just want to see what's going on under all the blood.  I get him cleaned up and see a pretty good hole in his head, where he had hit the stairs.  He was carrying the iPad and tripped.  He had to choose head or iPad, he chose iPad.

I drive him over to the Chateau because I was pretty sure he would need stitches.  The ED was a full house. I've never seen it that busy.  Most of the chairs were filled, there were kids crying, bleeding, throwing up in buckets, it was insane.  I should checked to see if it was a full moon.

The initial assessment was that yes, he did need stitches, but we had to wait for a room to open up.  We got there at 7:30 pm and they didn't get us back to a room until after 10.  Jackson was pretty worked up that he couldn't touch his head on that side because it's the side he tends to stim on.  He kept typing, "Blud, hit your head" on the iPad.

After they finally took us back, Jackson decided to document the process with selfies on my phone.

Numbing cream.

Bandage to prevent touching the numbing cream.

Looped on versed.

Stitching him up!

End result.

Finally got home a little after midnight.  Got the stitches taken out this past Tuesday, which was more traumatic than having them put in.  Versed is a wonderful thing, even though he was looped out of his mind and couldn't walk straight.  LOL  

Then, on Sunday, "the cough" decided to pay us a visit and we needed to head to the Chateau at 5:30 am.  I had to wake up Jameson and bring him along because Randy was out of town for a wedding.  Here's how Jameson decided to spend his time with the extra supplies from the mask kit:

Jameson was also thrilled that the doctor gave him a cherry popsicle at 6 am.  Jackson responded well to the meds and we were home by 10 am. 

Whew.  I need a nap.

Object du Jour:  The iPad and a huge box of old, old, old garage door remotes that a local garage door company gave to Jackson.  It's raining remotes!

That's how we roll...

This is something I'd never thought I see...J on rollerblades!  They rollerblade occasionally in gym class and tried some on Jackson.  He did OK with lots of help, but didn't want to talk about it when he got home.

GI appointment a few weeks ago.  Weight and height up, which they are happy about.  The team still wants him to expand his food horizons, he will now eat chicken sticks, but that's the only new thing he's added in awhile.

Trip to Disney World was a success!  Jackson went on all the rides he was tall enough for.  Some he liked, some not so much.  I'm happy he tried them though.  We did lose a garage door opener on the Big Thunder Mountain Raiload.  That wasn't good. Jackson was howling, we thought it was ride, but it was the remote.

Object du Jour:  A huge box of garage door openers from a local garage door place.  So generous of them to let J have them!

Randomness...

Here's some fun pictures from the last month:

 Jackson, at Jameson's birthday party at Chuck E. Cheese, he was not happy to be there at first.  He kept the hat on during the whole visit and kept a garage door remote in each hand for security.  Toward the end of our time there, he was running around and even had fun playing some of the games.  It just takes a bit to warm up!

In December, Governor Walker and his wife, Tonette came to Children's Hospital of Wisconsin to make Christmas ornaments with some of the kids.  That's him in the suit, next to his wife in yellow.  I'm getting interviewed by a local TV station about what it's like to hang with the Governor.  LOL  Jameson chatted up Gov Walker about Santa and how to clean marker off of fingers.  Jackson wasn't impressed.  

This picture cracks me up.  It's Jackson at his Christmas concert at school.  I was hoping he wouldn't see me, but we were in the second row.  He's trying to plug his ears and chew on his fingers at the same time.  He kept yelling, "Mommy, get the iPad."  So much for singing!

Every year Jameson gets to pick where he wants to eat for his birthday.  This year, all he wanted was crab legs and onion rings from Hooters.  We're classy like that!  He was very happy!

Object du Jour:  Garage door remotes, he just got a Stanley in the mail from Aunt Donna today, can't wait to see his face when I pick him up from school!

Croup....with a twist.

I sing this to Jackson all the time: Ain't no party like a Jackson party, cuz a Jackson party don't stop!  He thinks it's hysterical, but it's oh, so true.

Friday night, as I'm putting the boys to bed, Jackson kept saying, "Does your say hurt?"  Say = mouth, cuz you say stuff with it.  He's so darn literal.  I looked at him and he seemed fine.  At 1 am, I heard "the cough," by 1:30 we were bundled up in the car heading to The Chateau.

We check in, they take us back and begin the questions.  It's frustrating sometimes because med students are looking for something a little more exciting than croup.  I know it's the ER, I know they have to cover their bases, but I've been through with Jackson more times than I can count.  I told her it's croup, he needs a racemic epi and decadron. This particular student was convinced Jackson was choking on something.  She even brought in another person to hold him down, so she could dig around with a tongue depressor.  When a foreign body was not found, she left without a word and a nurse appeared with a racemic epi and decadron, aka the "Mr. Steamy."

The nurse was wonderful and this was the first Mr. Steamy that didn't cause Jackson to cry, scream, thrash or burst blood vessels in his face.  He calmly sat and played with the iPad and let Mr. Steamy do his job.  I think Jackson finally, finally understands that the breathing treatment makes him feel better.

Here comes the twist:  ready?  We are now in the 3 hour holding pattern that comes after a breathing treatment, waiting for the rebound that leads to hospital admission.  As we're sitting there, I'm watching a show about JFK and Jackson's playing with the iPad, I'm absentmindedly petting J's head.  I feel a huge squishy spot.  He doesn't react, so I didn't think it was hurting him.  I continue poking around and realize the spot is pretty big and I remembered he had fallen a week before.  I slowly start to panic, I'm overtired and my head is going to the worst case scenarios.

The doctor comes in to check on J's breathing and I ask him to feel the squishy spot.  He says, "Well, that's not right, I think I feel a ridge, we have to scan him."  I ask what that means and he explained that a ridge could be a skull fracture and the squishy spot is probably a hematoma, but if any of the membrane is coming through the ridge, he will need surgery.  I'm now in official panic mode.  Go in with croup, come out with a skull fracture.  (Where's that med student now, huh?)

We attempt to do the CT scan which sends an overtired, hopped up on meds 9 year-old into uber panic mode.  ER doc tells us since the rebound hasn't happened, we can go home and call ped on Monday to get an order to do the CT scan under sedation.  We couldn't sedate him at this time because of the breathing issue. So, now I get to worry two whole days before I can call the ped.

I call the ped's office, she's off this week, so they give me to another ped.  They send an order over to the hospital, but they can't get us in until Wed, two more days of worry for me.   The doctor calls me Monday and basically talks me down.  She was fantastic.  She didn't think there was a fracture because Jackson wasn't having any odd symptoms.  She also didn't want to sedate him because she was worried about any adverse reactions he may have.

Wednesday morning, we get to radiology and walk into the room where the CT scan is and Jackson starts to panic.  They ended up having to put a collar on him, velcro him to the table and velcro his head down. Looks like fun, huh?  I haven't heard him scream like this before.

The three girls that helped us were really fantastic, they kept him calm (as best they could), told him everything they were going to do, and were great with Jameson.  Luckily, even with all the screaming and attempts to bust out of the velcro, they got a good enough picture to send to the radiologist and the ped.

The ped called a few hours later and said that she didn't see any evidence of a fracture.  Whew!!  There is still a large hematoma between his scalp and skull that will take several weeks to go away.  She also said that when the blood starts to clot in there, it will get hard and that if we feel lumps, that's normal.

Alls well that ends well, right?  Like I said, "Ain't no party like a Jackson party, cuz a Jackson party don't stop!"

Object du Jour:  Lego sunroofs and the iPad.

P.S.  Then this happened. Who needs turkey when you have a big ball of green playdoh?

The Liftmaster and Doc Brown

So, here's pictures from the Fall Dance at school.  Jackson was a Liftmaster garage door opener and Jameson was Doc Brown from Back to the Future (note the pocket of plutonium!)

I had no idea how to make a Liftmaster costume, but it got Jackson's seal of approval and that's all that matters!  We went trick or treating last Saturday, and instead of saying, "Trick or treat", Jackson would say, "Liftmaster garage door opener."  I think he was really hoping someone would drop one in his bucket.

I'm procrastinating prepping for a talk I have this afternoon to OT students about what it's like to be a parent of a child with special needs.  I was reading through my materials and I usually show the class a poster from the Human Genome Project that lists conditions linked to specific chromosomes.  I was reading through the 4, and the heart condition Jackson was diagnosed with this summer is linked to the 4th chromosome.  Why does that blow my mind?  I don't know, but it does for some reason.

School has been going well for both fellas so far.  Jackson loves school and misses it on the weekends.  He's doing advanced spelling tests because he's so darn good at it.  Maybe he could be a professional speller one day.  I'm really proud of him.

The last pic is our new family member, Dixie, who joined us in April.  Our last cat, Tigerlily, passed away earlier in the year at almost 15 years of age.  We adopted Dixie from MADAAC, which is Milwaukee's animal control.  They guessed her to be around a year old and she couldn't be sweeter.  The boys love her and she's really patient with them.  I got the naming rights and I named her Dixie after Daryl Dixon from my favorite show, The Walking Dead.  Explaining to Jackson what happened to Lily was very difficult.  All he knew was one day she was here and the next she was gone.  He still asks for her occasionally.

Object du Jour:  Lego sunroofs.  He sleeps with them on his thumbs and if they fall off, he wakes me up to find them.

First day of school!

Today was the first day of Kindergarten for Jameson and 3rd grade for Jackson.  J was a bit nervous and cried a little.  Jameson marched right in there without issue.

We did decide to take Jackson out of school a bit early because the Milwaukee Brewers have a Community Foundation that raises money for different groups throughout the city.  They raise a lot of money through their 50/50 raffles at the stadium.  They held a press conference today to celebration raising 5 million dollars!  The conference was held at the Miracle Field where Jackson has played ball for the last three years.  After the talking part, which Jackson was not so thrilled with, the players played a quick game with the kids.  We got to meet, take pics with and get autographs from catcher Jonathan Lucroy (l), pitcher Marco Estrada (r) and pitcher Brandon Kintzler (c). That's J in the red glasses next to Brandon Kintzler.  Such a fun day!

So, we have J's first full day of school tomorrow!  Jameson said he liked school and had a lot of fun today.  He was very excited to be able to eat hot lunch at school.  We've been practicing his pin pad number for weeks, so he could get his lunch today.

Object du Jour:  The iPad.

No archery on the playground!

So, the boys go to summer school.  Jameson is taking an Intro to Kindergarten class and Jackson is just taking the same thing he does every summer, just to keep him from losing skills.

Jackson loves to walk along the side of the building reading all the signs along the side of the school.  "No archery on the playground."  Really?  It's that much of a problem they need a sign?  Anyway, Jackson gets to the door that Jameson goes in and tries to skittle in with the rest of the potential 5Kers and the teacher says to Jackson, "Don't worry, you'll be in Kindergarten soon enough!"  Um, he'll be 9 in a week and in third grade in the fall.   I just see Jackson as Jackson and sometimes forget how the rest of the world sees him.  Most of the kids in Jameson's class are taller than Jackson.

Jackson's new aversion...baths.  He used to love playing in the bath and it was a challenge to get him out.  Now he screams and hits his head saying, "Don't want your hair wet."  Baths are now a quick dunking to get the dirt off and that's it, and even that is a battle.   I'm also not allowed out of his sight.  He follows me from room to room saying, "Mommy, sit on your butt."  In order for him to be content, I have to be on the couch or in the computer chair or he screams and cries and hits his head.  This makes it very challenging to get anything done.  That appointment with psych can't come soon enough.  I just don't know how to handle all of this.  I hate seeing him so worked up, but I can't spend the summer on the couch.

Off to go get them at summer school.

Object du Jour:  A Lego sun roof.  J found a picture of a Lego sun roof while he was Googling Legos and became obsessed.  I ordered some from ebay.  He's been carrying it around and sleeping with it since they day I gave it to him.  Thankfully, there were several in the lot I ordered, so when he eventually loses this one,  (and he will) I have backup.