Jaxon's 2nd Movie

We have taken Jaxon to see 2 movies.  Last month we went to see Despicable Me 2.  It was his 1st movie experience so we really didn't know what to expect.  Overall he did really well.  Today we went to see Planes.  He did good for the first part of the movie.  The planes flying right at the screen made him laugh so hard.  He did like Despicable Me 2 better I think.  Part way through the movie today he began banging on stuff (typical sensory seeker stuff), asking for ice cream and saying bye bye.  Bye Bye means he's done and ready to leave.

We go to special Sensory Films put on by AMC theaters.  These are offered once a month always on Saturday morning at 10 am.  They are for children with sensory issues and their families.  Talk about a true blessing.  We went to the 1st movie knowing no matter how Jaxon did no one was going to judge or get upset.  All the kids talk, move around, play and get bored.  The theater will turn down the volume based on what the crowd wants, you can bring your own snacks based on your child's needs,  the lights are not quite as dim, and kids can just be themselves.  It also takes the pressure off parents for their child to behave and be quiet.  As I said before Jaxon got distracted.  BUT no one cares, other kids are talking and doing their own thing also.  We still try to teach Jax throughout the time, he needs to sit down and be quiet.  He usually needs a lot of direction about this but I think the more we expose him the more progress he will make.

These movies are only shown in AMC theaters and the closest one is in Olathe, KS.  For us the drive is worth it.

School Carnival

On Friday night Jaxon had his school carnival.  It was actually a Special Education Carnival put on by the Special Education Committee for Special Education kids and their families.  I was asked to be on the committee last year but I had to decline.  We were really busy with appointments and I had other volunteer obligations.  They have asked me again this year and I think I'll be able to help out.  Jaxon is more stable and many of his routine every 3 month appointments are now stretched to 12 months unless he has a problem.  It's also a great way to connect with other special needs parents.

 Daddy was teaching Jaxon the proper way to throw a ball.  There were several activities:  basketball, gym scooters, a tunnel, bowling, balloons, this throwing game, bean bag toss, and several others.  In another area there were information booths for parents to explore.  We all had a really nice time.  Jax of course put his cute smile on and got a happy face balloon from one of the booths.  She was using it for a display.  Sigh this kid knows how to get what he wants.

Another Seizure

Jaxon had his 1st day of pre-school  for the year on Wednesday.  He was very excited to ride the bus and only got a little upset when they left.  He was pulling at the seat belt when he got home trying to get out and come see Momma.  We send a notebook in his bag back and forth each day telling how the day went and what how his therapies went.  His teacher last year started this and we really like the idea.  It's a great way to communicate any problems and successes.  Even the therapist like it, I overheard this physical therapist telling the new teacher how we did it and it worked well.  This year he has a new teacher.  Mrs Ogden.  She is going to try to teach him to call her Mrs O.

After he got home from school he was really tired but still wanted a snack and to watch a movie.  I put him down for a nap and then left for work.  His nurse called me when I was half way and described his behavior and I knew for sure he was having a seizure.  I went over our routine with her just as a reminder what to do.  You can imagine you are ready for a seizure and when it's happening your brain can just stop.  So then I left her to take care of Jaxon.  I turned around and headed back to Topeka.  I called Jason and told him to get home.  It's nice to have him working 15 min from home now for emergencies like this.  I waited awhile and then called the nurse back to get an update.  She said she had already called an ambulance because the meds weren't working.

When I got home they were loading him up in the ambulance and getting ready to leave.  As we were heading to the hospital his breathing started to slow and he wasn't taking in enough to support his body so they started to use a bag to help him breath.  It pushes breathes into his airway.    We also turned on the sirens and began going what they call emergent.  We needed hospital help quickly. They gave him more meds to try to stop the seizure.  Basically he was so tired from the seizure and the medication he couldn't support himself breathing.

When we arrived at the hospital his little room had about 10 people in it working on him and then I saw the dreaded machine.  So I asked if it was a ventilator and they said "Yes".  So this seizure turned to worst ever.  They intubated him.  In the picture that's what all the hoses and tube coming out of his mouth are.  This consists of putting a tube down his throat and using a machine to help him breath.  Then they had to sedate him enough so he didn't gag and cough because of the tube.  They finally got him settled down and did a CT of the brain.  Everything showed as normal as it gets for Jaxon, so we moved up to Pediatric Intensive care unit for the night.  After about 5 hours he came out of sedation and they were able to remove the tube.  What a relief.  All this time we had been unable to get a hold of his neurologist because he was out of town and doesn't return until Monday.  We were discharged the next morning.  One nurse was really surprised at how quickly we were out.  But honestly there was nothing more they could do for him.  Now we wait for the neurologist to get back to us and see what action we will take from here.

He is feeling better each day.  He just needs a lot of rest.

1st day of pre-school

Jaxon has been ready for school for a week.  Several times he's asked about the bus!!

4 Year Pictures

Waiting to get his 4 year pictures taken at Shawnee Lake.

Mindy Armstrong Photography has been doing Jaxon's pictures since he was a year old.  She took some pictures for the March of Dimes Ambassador family volunteering we did.  Mindy is super patient and really just lets Jax do his thing and follows him around taking pictures.  She is amazing with him and we are so lucky to have found a photographer who will not just think he's being a brat.  Well he is sort of sometimes but his sensory issues really play a large part in his daily activities.   Also she takes her time and doesn't rush us.  I know with photographers schedules this isn't always the case but she always makes ample time.

Jaxon's 4th Birthday

So this is a little late.  I had it all ready just not pictures.  So here it is.

We decided not to have a party this year.  Parties are a lot more work than you would think.  At least for me.  I usually work 2nd shift the night before so I have to get up extra early and run crazy to get everything ready for a party.  Then I'm just tired and cranky.  There's getting invites out in time, planning where to have the party, it's always to hot in July to do it outside.  If you do choose to have it at your home you have to make accommodations for large family.  Then there's your sensory kid who just wants to cling to mommy and isn't really excited to see everyone who has come to celebrate.  Don't mention buying cake and ice cream he won't eat.  So for less stress we decided to change it up this year.

So instead of a party.  I decided we would just get together with everyone when we had time.  On his birthday we ate lunch with Grandma Barb at the hospital.

We were a little early so playing outside while waiting for Grandma.

  Jax and I celebrated by going swimming in the late afternoon.  The kid loves the water so it was a great celebration.

He was tired of swimming ready to go home.

Then we went to grandma Tonya's for dinner, cake and ice cream.  Jaxon took a couple bites of ice cream but that was it.  He had a great day.

He just wanted to touch the candles!!!

Then later the next week we met up with Nana aka Michelle for lunch with cousins in tow.  My brother David's daughter is still a baby, so Jax calls her "baby"  or "Addy"  for Adalynn and Jaxon's buddy Britian.  Brit has a way of making Jax laugh.  I know he wishes they lived closer.  Every time I tell him we are going to visit them he gets excited and says "Yeah OK"