Potty Training Jaxon

I just decided out of the blue, ok maybe not totally out of the blue, we should try potty training over Thanksgiving week.  Jaxon didn't have school or therapy for 3 whole days so I figured as good a time as any.

I did my research on potty training kids with sensory issues.  Not really much to research as each kid is different.  Sensory kids are weird like that.  They have their own little trigger points and you just have to figure them out and play along.  I knew one of Jaxon's would be sitting on the potty, so we started tackling it months ago.  He does this really well.  1 for the potty training team.  Next was figuring out how best to get rid of the diaper.  I've heard wear just underwear or go completely naked (CRAZY).  I've gotten so much advice from well meaning folks.  But lets be real this kid just does things a little different.  He doesn't eat much so candy and snacks as a reward are out.  He doesn't really care about stickers and charts.  Seriously you are gonna get the "Oh good for you MOM"  look if I tried any of this.  When you inject 4 oz of water at a time through a tube into his stomach.  Yeah you should be getting a mental picture of Niagara falls about now.  It isn't exactly your sippy cup of juice all day long.

So with all that in mind we decided to try going underwear only in hopes he actually cared about being wet.  And I'll tell you right now he DOESN'T.  We are also using pull ups for naps and going places.  On the potty chair (attached link is the one we are using and seems to work well for a 4 yo.)  we are letting him play music on the ipad with headphones.  This is really helping in getting him to sit for a longer period of time.

This works well for a 4yo.  We tried a couple others but they were to small.  Also very stable if you kiddo is scared of falling.  I'm also not getting anything to advertise this.

Day 1:  Started with big boy underwear.  I gave him his morning medication and a little extra water.  About 10min we went to the potty and waited and waited.  Nothing for about 20min so I let him get up, pulled up his pants.  Less than 2 min he was wet.  Dang it so close.  We tried again a little later and nothing.  So he climbed in my lap to watch TV and yep you guessed it we both were wet.  This happened at least 2 more times before I left for work.  So this went on all day.  Just couldn't ever quite catch him or get him to sit long enough.  By the end of the day we figured out we think he is holding it and waiting to feel the security of his underwear.

Jammin out and yes I'm covering him.

Day 2:  Started with big boy underwear.  I gave him his medication and a little less water.  Thinking I will spread this water out a bit and see if it helps.  So we hit the potty 15min after his medication.  We waited about 25 min and still nothing and he was starting to get a little impatient.  So I let him up and we go into the living room less than 2 min and he pees all over the carpet.  I change him thinking he's probably done for awhile let him run around.  Nope he proceeds to lean on me and pee all over my pants and carpet again.  So I put a pull up on him and he took a nap.  After nap I gave him more water and when I left for work he had been sitting on the potty for about 25 min.  I really think he was holding it because he kept grabbing himself and trying to get up.  I think with his sensory issues he likes the feeling of the underwear or diaper.  So his nurse was going to just try to wait him out and see if we could get a successful potty trip.

Lookin big in his underwear.

All in a Day's Work!!

Week 4 Feeding Study

This week was pretty low key.  The overnight feedings are going really well.  No major spills.  As for the daytime eating by mouth.  Well I can't say he is eating more per setting but he is eating more times a day than he was.  The variety is still the same chips, pudding, yogurt, crackers and tiny sips of chocolate milk.  He will get a appetite enhancer during week 10 of the study.  We are hoping this will make him wanna eat more and try some new things.

The study:  When we arrived the nurse took his height, weight, blood pressure, EKG, and blood work.  After this was all done the doctor arrived and prescribed a larger dose of the study medication.  And that was it.  The next three weeks we speak with the dietitian over the phone from home.  Yipeee we get a little break.  It can be a bit much going to Kansas City twice in one day.

KU feeding study

I just wrote this entire post and somehow deleted it.  So here goes again.

Jaxon is in a feeding study to wean him of his feeding tube.  Here is a article giving some of the information.  I will try to do a weekly/bi-weekly post on all the happenings.

Week 1 we just met with the study team and got all his baseline vitals, signed paperwork, drew blood.  We had homework to get 3 days of food log, and 2 video's.  He had several seizures on Saturday so his feeding logs were a little weak.

Week 2.  More vitals and blood work and received his study medications.  This week we had to move to 12 hour continuous feeds with his pump.  Meaning he will get pedisure for 12 straight hours at a slow rate.  Jaxon has never been on continuous feeds so I wasn't real sure how this was gonna work out.  At first I assumed this would be an all day thing.  I just thought about how long these 10 weeks would be with him taking his pump to school and his balance issues while carrying the weight.  However, they gave us the option to run it over night and boy were we relieved.

Night 1 was a disaster his tube came unhooked and pumped milk all over his bed for an unknown amount of time.  If you've ever smelled pedisure formula you understand.

Night 2 was a success.  He got all his food and when he woke up he now tells us "I'm Stuck"  meaning his tube is still hooked up and he can't get up until we unhook it.  This is a great thing just trust me on the details if he gets up and pulls it the tube out while knocking his iv pole with pump and everything over.  Yeah it's happened.  He even ate breakfast.  I can't even remember the last time he actually ate breakfast.  So maybe this 12 hour thing will be a bonus.

The study lasts 6 months and at the end the goal is to be tube free.  I would love for him to be tube free but I will not be disappointed if he's not completely tube free. I only be disappointed if he is not eating more by the end.

Daddy's little helper

Jaxon loves to be on the farm.  He loves riding the 4 wheeler, riding in the machines, and checking cows.

Helping daddy feed the baby calves

Checking the babies to make sure they are all healthy

Trying to keep up with daddy. 

Making sure the hydrant is working like it's supposed to.  It has a small leak and he kept telling Jason "Uh Oh"

Halloween 2013

We decided since Jaxon loved his 1st movie Despicable Me 2.  We would dress him up as a minion.
He actually had a lot of fun this year.  He loved seeing all the costumes and saying "trick or treat"

Trick or treat goodies.  It was a pop type gun with a ball on the end.  Like Christmas in October.

1st day of Sunday School

Jaxon had his 1st day of Sunday School today.  We have always opted out of taking him until now because of germs, illness, others not knowing how to deal with his disabilities.  Well he is getting to be quite the big boy and he can manage most everything on his own without any assistance.

It didn't hurt when we found out his TARC case manager worked in the preschool room.  Honestly that's what gave us the courage to take the 1st step.  She is an amazing lady and since she spent 3 years visiting us in our home and knows Jaxon really well, we felt very comfortable giving it a try.

Hi grandma

They all said he did really well.  I was very nervous for his 1st time.  He can be very stubborn and demanding when he wants to be.  I'm so happy he had a good time.

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"

Discovery Center Pond

The Discovery Center has a new outdoor area with a pond.  The pond is made to walk in, float a boat, try to catch tad poles whatever you wanna do.  It's kid friendly.   So Jaxon and friends decided to take a dip.

Come On Mom, get in with me.  Oh No I wasn't getting in there.

Whaaaaat???

Digging in the rocks and mud

Silly Boy!!!

2013 Summer Time Fun

The weather for summer has been pretty cool so far.  It's mid June and we just went swimming for the 1st time a few days ago and it was chilly.  That didn't stop Jaxon though.  The kid loves the water.  We worked on walking in the water unassisted.  He is learning how the water moves and how he needs to react and use his muscles to keep from falling down he did pretty good for his 1st time practicing.

Since we are taking the summer off from speech therapy I decided to enroll Jaxon in a music class.  It is 30min a day 4 days a week for 2 weeks.  So far he is really enjoying it.  The class is really well structured and it flows great.  You look up and the 30min is over.  I hope next week goes as good as this week did.  I wish we could do this all year long but since he has school and therapy we just don't have time to fit it in.

Jaxon enjoys the outdoors to no end.  He just loves to walk around the yard.  So I decided it was time to start taking him along to the farm and I mean more than feeding cows.  He got to go with Papa to help work on equipment for haying.  He was glad to have his cousin Brynna along.  She makes him laugh and makes him mad all at the same time.  It's so funny watching them play together.  He's the little brother she doesn't have and he can't stand her messing with him but loves when she makes funny faces and does stuff to make him laugh.

Jaxon is the 4th Generation in these photos.  His great grandpa is in the black shirt and his grandpa (my dad) is in the plaid shirt.

Shorties making sure everyone is doing their job.

Tell them how it's done Jaxon.

Double Trouble.  I'm sure they were up to no good.

Handing me parts.  I have been the parts and tools runner since I was old enough to walk.

Hey what's the problem??

Last Day of Preschool

Today was Jaxon's last day of preschool.  I made him ride the bus because I new the fight I would be in for if I took him to his class.  His teacher had asked the kids with summer birthdays to bring treats today.  So I made Dirt and Worms.  Jaxon's cup is minus the dirt of course.

When Jaxon was screened for preschool he couldn't walk at all. He was unable to communicate anything.  His teacher admitted after reading his file she thought to herself "can I do this"  He fell asleep about 3/4 the way through the 3 hour class.  Then she met Jaxon.  Today he can walk to the bus, walk to class, walk and play on the playground.  He stays awake all through class.  He has over 80 words in his vocabulary.  He knows and recognizes all his letters, numbers and shapes.  And his teacher forgets he is any different than the other kids and they are all 2 years older than Jax.

It was a little bittersweet.  It will be nice to not have to get up super early in the mornings but I will also miss getting a little time to myself every week.  The year started off a little rocky with Jaxon hating the bus ride, and scaring teachers with lots of things such as falling down or hitting his head.  But as the year wore on they became more accustomed to his normal behavior and I got less and less phone calls and notes.  His main teacher Mrs. Moody is leaving.  We are really going to miss her.  It was so great for all of us to have such a great experience for Jaxon's 1st year.  With IEP's and all that goes along with sending a special needs child to school it can be a little overwhelming.  But when you know your child loves his teacher and that they will take good care of him you don't have nearly as much to worry about.  Honestly that's the truth.  I just knew everyday he would be fine.  He might drive her nuts following her around or clinging to her but he would be ok!!  I mean look at this kid is he spoiled or what. 

 He also had several para's he felt really close to.  Jaxon didn't realize today was his last day for the year but when I told him to give Mrs Anna a hug, he gave her a BIG hug.  He really liked her.  She has a calm way about her and he seems to really respond well to her.  I'm excited she will be working with him next year also.  We don't know who his teacher will be yet but I hope to meet her?? before school starts.

Next year will be all new students and a new teacher so he will have some adjusting to do.

Jaxon's 1st Amtryke Tricycle

Jaxon has been talking about " A Bicycle for months"  He's seen it on Mickey Mouse Clubhouse Road Runner Rally and of course several other places kids his age see bikes.  He is so fascinated by bikes and he just talks about them all the time.  So I started researching how to get him his own bike.  Jaxon can't just ride a regular tricycle. They don't provide the support he needs with his balance issues and he doesn't have the strength in his legs to pedal.

So online I found several types of bikes but without knowing more about them I had no idea which one to choose.  So his occupational therapist at Easter Seal Capper Foundation got one of their bikes out at his appointment and we tried it out.  As soon as she brought it in the room he started saying "A bicycle"  "A bicycle"  with a huge grin on his face.  We got him on the bike and he wasn't so sure about having his feet strapped in but it is necessary to keep his feet on the pedals.  As we rode the halls he became more comfortable and began shouting Ready Set GO!!

Here is his 1st ride.  Wilma had to give him small pushes.  As you can see in the picture the handles turn so he uses his hands to help it move also.

This particular bike is called Amtryke and is made in Germany.  It has foot pedals with straps, hand pedals so he can assist his feet to make it move and a seat belt.  Also there is a handle on the back for Jason and I to give him a little push and steer him.

It is a very expensive tricycle so we asked all the grandparents for money early for Jaxon's birthday and they all agreed to pitch in and it just arrived yesterday.  He is a very lucky little boy to have to such a great family.  He was so excited when it arrived.  He kept trying to sit on my lap and move the wheels and handles while I was trying to put it together.  And he kept saying "Fix it"  "I Fix It"

I was so excited when I saw this big box on our front porch!!

1st ride at home.

Latest MRI

Jaxon had an MRI on Wednesday.  It was a short 5 minute one.  I swear it was actually like 3 minutes, but they got what they needed.

Here are a couple pictures.

This 1st one is from September 2011.  All the white is fluid build up.  The fluid is pushing the brain to the outside against the skull.

This 2nd picture is from May 1, 2013.  This is 6 months after the shunt was placed.  The fluid level has gone WAY down.  Even the neurosurgeon was very impressed.  He told me "It would have been easy to give up but we persevered"  He said this a couple times.  And he really encouraged me to show these pictures to Jaxon's neurologist.

We don't have to go back for a full year unless we have problems with the shunt.  This is the best news we've had in awhile.  Jaxon is really starting to progress all around.  The neurosurgeon was also impressed with all the words Jaxon was saying and how well he got around the room unassisted.

What a wonderful Day!!

Disney World 2013

It all started when we decided we wanted to take Jaxon on vacation with us this year.  There aren't many places a toddler can go where he isn't required to walk A LOT.  So we had to choose something that would be fun for him, didn't require a ton of walking on his part, and we would enjoy.  So while looking online I ran across Disney World.  I wasn't sure how much a toddler could do but I figured it was worth a look.

Don't be fooled.  There are tons of things for toddlers to do.  They need to be about 33 inches and they can do most everything age appropriate.  There are bigger roller coasters and rides they can't get on but at their age they wouldn't want to anyway.

So my next big task was to sell Jason on the plan.  He was a little hesitant because he was thinking Worlds of Fun type park.  It is nothing, I repeat nothing like Worlds of Fun.  I went online and showed him all the parks and everything Jaxon could do.  He was also worried Jaxon wouldn't remember the experience.  The only thing I could think was how much fun he was gonna have.  Who cares if he remembers it.  Do you skip going to the park or the swimming pool in the summer just because your kid might not remember it.  After I explained Jaxon is almost 4 and he remembers more than you think he was sold.  I also believe the magic wears off as they get older.  Sure they remember it but the Wow factor just isn't there.  Next it was planning the entire trip.  Since I didn't know what I was getting myself into I hired a travel agent.  There are several resorts to choose from on Disney property, meal plans, all the different options for park tickets example park hopper option.  Then you need to know the ins and outs of the parks to truly enjoy your time.  If you don't have an itenary you will end up waiting in long lines and not getting to spend as much time doing what you want.  We also wanted the travel agency to help us sort through all the options for taking a disabled child.  The agent we chose specializes in Disney world and the owner is a retired special education teacher.  What a fit.

Disney World is amazing at helping with disabilities.  We got a room on first floor, so we didn't have to worry about using stairs or the elevator every day.  When we arrived at the park, we were given a wheel chair pass for Jaxon's stroller.  This allows you to drive the stroller right up to most rides and then load him onto the ride instead of checking the stroller and carrying him through lines.  Talk about back saver.  We tried about 2 rides without the pass and we walked all the way back to the front of the park to get a pass.  Lesson learned.  We were also given a pass for Jaxon's poor vision.  This way he was able to sit up close in shows as long as it permitted.  The only bad thing I can say about their services is we had to pay for buffet meals for him a couple times and he doesn't eat a single thing.  One of them we didn't mind because the characters come around and visit, so I understand but the other one was just a plain buffet.  I guess it's something they could work on.

Each night we looked through our itenary and decided exactly what we wanted to do.  The first thing we decided was we can't do everything and Jaxon needs a nap everyday.  So sticking by those rules.  We got to the parks as soon as they opened.  Rode all the rides we had time for or until things got really busy.  Then we went back to the hotel for a nap and swimming.  Then we returned in the evening for a 2nd round.  Usually in the evening it included a show or parade with fire works.

Day 1 - We arrived about 11:30.  We checked into our room and explored around the resort so we knew where everything was.  Picked up the package I had mailed to myself.  Taking formula on a plane is a mess so I mailed most of it.  We had a reservation for a dinner show.  This was our first experience figuring out the transportation system. We took a boat to the show.

Day 2 - Magic Kingdom

Classic Dumbo ride.  We rode this at least 5 times.  He loved it.

This is a roller coaster.  And I'll tell you I even lost my stomach.  Jaxon loved it and rode it 5 times also.  He just couldn't get enough.

Of course we had to take a ride on the train.

This was our favorite parade.  They take everyone out into the street to dance with characters.  Jaxon saw this twice and had so much fun both times.

Getting ready to dance with Donald.

These awesome bushes are everywhere with all the different characters.

Of course meeting Mickey Mouse for the first time was a huge highlight.

Day 2 - Epcot

This is more of a older kids and adult park.  Jaxon had fun meeting several more characters and rode 1 ride finding nemo several times. All around the park there are areas set up like different countries including their music and food.  This was a favorite.  We also found a little playground and stopped to let Jax stretch his legs.

Epcot Ball

The flowers were amazing.

To bad parks at home weren't turf grass.  

I think his smile says it all.

Come on Daddy Again

Day 3 - Animal Kingdom

We went on a safari and got to see some really cool animals.  Jaxon's vision didn't allow him to see some of the smaller animals but he was able to see the giraffe's and elephants.  He loved all the music in this park also.  A lot of drums.

This is the Tree of Life.  On the trunk is carved out all kinds of animals from around the world.

Waiting for a seat at our character lunch.  It was a lot of fun.  All the characters come by your table and spend a little time with you.

Day 4 - Hollywood Studios.  This was another favorite park for Jaxon.  He got to see a live show with Mickey Mouse and friends, play in a Honey I Shrunk the kids play ground, he rode with Jason and I on the Toy Story ride.  We had more fun on the Toy story ride than he did hehe.  We left and went back for a nap and swim.  In the evening we returned for the Fantasia show.  It was amazing.

 Last Day - We went back to Magic Kingdom for half the day before leaving.  We rode all Jaxon's favorite rides one last time and saw his favorite parade.  We also shopped for souvenirs.

It truly was a magical trip.  Watching Jaxon respond to all the sights and sounds was a great gift.  Being able to spend a care free week with my family makes working all year long worth it.   It honestly couldn't have been a better week.  Disney is always busy but we were able to do almost everything we wanted without fighting crowds and long lines.  In the afternoons the lines tended to be really long but we were napping and swimming.

Until next time, Jason says maybe a Disney cruise.  Who knows!!