World Prematurity Day

WORLD PREMATURITY DAY

November 17th is World prematurity day.  All across the world organizations get together today to increase awareness.  Here are a few facts  from March of Dimes website.  Our Jaxon was 1lb and 3oz when he was born and spent 4 months in the NICU fighting for his life.  The things the March of Dimes has done to help prevent premature death, saved his life.  Jason and I are indebted to so many doctors and nurses for the amazing care and love they have given our little boy in his short life.  And we are so proud of the Superman he has become.  Even though our little guy survived, many do not so there is still a lot of work to do!!

Jaxon's Shunt Recovery

Jaxon's Recovery

Jaxon's shunt recovery has been a little difficult.  The day before his follow up appointment he started falling down more and his left side seemed a bit weak.  He also started a squinting thing with his eyes.  The morning of the follow-up he had preschool, and the the school called.  When I see "Farley Elementary" on my caller ID, I immediately think Huh what's it gonna be.  His teacher was telling me he's falling down a lot and his left side just seems really weak.  He is misjudging distance.  In fact he did face plant on his train table at home.  As I watched him it was just a simple, he didn't know how far away he was.

We went for the MRI.  It was a quick 5 min deal.  I was very excited   All of our previous MRI's he's needed to be put to sleep.  After the MRI we met with the Neurosurgeon and he informed us there was fluid build up on the right side of the brain between the brain and the skull.  This could be causing problems but he didn't think so.  The good news, yes there's good news.  His ventricles are half the size they were.  The pressure has been released from the brain and brain stem.  The shunt is doing its job.  This should help his development but only time will tell.  We expressed our concern about the falling down and lack of stability on left side.  He immediately ordered a CT scan to see how old the blood was.  The next day we got the results and the blood had occurred sometime after surgery.  So as long as it doesn't get worse it should be ok.

We met with his neurologist today because I still am not satisfied with Jaxon not wanting to use his left hand. He will try to use his right hand to unstrap his left arm from his car seat.  This has never been a problem.  We always play a little game, arm out, arm out Jaxon out.  So for him to refuse to take his left arm out is just not normal.  The neurologist didn't have any good ideas but wanted to see him to get a baseline in case things get worse.  One of our options is an EEG but really it won't tell us much because we already know he has seizures.  The only thing we could possibly do is a 3 day EEG and try to find out if he is having seizures in his sleep.  And that's only if he has them while hooked up to the EEG.  So I opted to wait and see how things go for the next couple of weeks.

I know this all sounds like a lot and starting something new sounds crazy but Jason and I feel like his speech and some other things are going so well we have decided to start going to the KU feeding clinic again.  We will begin 1 week after Thanksgiving.  The nice thing about the team is it consists of a dietitian  and a psychologist among other therapist but these are 2 we don't have a lot of access to normally.  Jaxon has made so much progress eating since we last saw them in February 2011.  We feel like maybe we can really get somewhere.  The downside is they only see patients on Wednesday mornings, so he will have to miss preschool when we go.  But he gets all the therapies at preschool every week and eating is not included so we have to fit it in somewhere.

Halloween

Happy Halloween

My little Mickey Mouse.  We visited all the grandparents.  Great thing about trick or treating to family is Jaxon only gets candy and toys he likes.  Since there are so many things he won't eat, it was nice for him to get Cheetos, cookies, peanut butter cups, light toys and books.  We didn't pictures and Nana and Papa's house he was just to tired out.

Visiting Grandma Tonya

Trick or treat Grandma Barb

Reading Go Dog Go with Great Grandma Kaff

And Again

I think he had enough costume.

1st visit to the pumpkin patch

Jaxon's preschool class visited the pumpkin patch this week.  Since the other kids don't ride the bus every day they were so excited about riding the bus.  Jason and I just took Jaxon to the patch since he isn't back to school yet.  He was super excited to see his teacher.  He just followed her around for the longest time.  We got there a little late so the other kids picked Jaxon a cute little pumpkin.  We went on a hay rack ride and had snack with the class.  It was really windy and cold so by the end Jaxon was cold and had had a enough. It was a minor meltdown.

Pre school Class

Getting ready for the hay rack ride

Jaxon's Shunt Surgery

Jaxon had his brain shunt surgery a week ago Tuesday.  Lets just say for starters this was a way better recovery than in January.  On Monday we went for pre-admissions testing.  Jaxon had been stuffy and coughing a little so we weren't real sure they would actually do his surgery.  After they listened to him several times we decided this may be the best it was gonna get since he's in preschool (aka germ zone) this year.  We got our arrival time of 9:30, so were happy we didn't have to get up so early.  Well while we were getting blood drawn they called and asked us to come in at 6:00 instead due to a cancellation.  So much for sleeping in.

We got home and Jaxon had a terrible night coughing.  He woke up at 1:30 am and decided he wanted to jump on the bed and watch movies.  Jason and I let him watch movies while we went back to bed.  He stayed up until we left at 4:30.  He did sleep a little in the car on the way to Kansas City.

Surgery was about 2 hours and went very smooth.  When we met with the surgeon after surgery he said he put in a bigger shunt than he originally planned.  He told us he was really glad we did the procedure because there was a lot more pressure on little man's brain than we originally thought from just looking at MRI's.  This sure made us feel good, we made the right decision.  He was talking as soon as he woke up.  He did have to stay flat on his back for 24 hours to make sure the shunt didn't drain to fast.  If it drains to fast the brain could pull away from the skull and cause bleeding.  I figured we would have a hard time keeping him down but I think he was to sore to get up.  They told us they can a metal rod from his abdomen up his chest, neck and side of his head and this was how they fed the shunt through.  We were discharged by Wednesday night.  So far he has been doing good.

One of the nurses in the operating room was very artistic.  She drew on his bandages below.  The 1st is the caboose of a train going into a tunnel on his stomach.  The 2nd is the steam engine coming out his head where the shunt is actually placed.  It was really neat.

The Caboose

The Steam Engine coming out his head.

The more boring information.  This was a brain shunt placed in his ventricle to allow the fluid to drain from the brain into his abdominal cavity.  It was non programmable if you are doing any type of research.  This means if we ever want to change the amount of flow he will have to have another surgery.  There is a shunt that is programmable, however it is programmed by a very strong magnet. This makes doing an MRI very difficult.  We would always have to go to Children's Mercy to have an MRI done.  In an emergency we would like to have the option to go to Stormont Vail get the MRI have it sent to the neuro- surgeon in KC and make the determination if there is a problem or he just simply has the flu.  Save us an emergency room trip to KC just to find out he simply has a stomach bug or the flu.  Vomiting is the most obvious sign of shunt failure.  We will have a follow up appointment in a couple weeks with a rapid MRI (he doesn't have to be put to sleep) and see how well it's working.  From here on out we should only see progress.

God Knows Best

I have told my self this every time Jaxon's surgery's have been delayed due to illness.  Each time I knew God had a reason for us to wait.  The reason we will never know but you have to trust he is always taking care of us.

Sand Box Fun

The Sand Box has been a huge challenge with Jaxon's sensory issues.  Well he has overcome those and loves to throw sand.  Watch out Florida Jaxon is coming to visit the beach this summer.

Yes I think I WILL throw sand!!

Even with no shoes.  He just dug his little feet in the sand.  Oh yes the beach will be so much fun.

Easter Seals Capper Foundation Video

I would like to share a video Jaxon and I did several months ago for Easter Seals Capper Foundation in Topeka.  Where Jaxon has been getting Speech and Occupational Therapy (fine motor skills) therapy for over a year.  He has met so many milestone with the help of our friends at Capper.  When they asked us to do their annual video for their biggest fundraiser I couldn't turn it down.  It is the least we could do when they've done so much for us.  Just the other day I received a piece of mail from them and on the front it had a picture and said "Meet Jaxon"  It was the letter sent out to everyone requesting pledges for the year.  A friend got hers in the mail and messaged me to let me know he was a "Rockstar"  He also  was in an ad in the newspaper this week and all his teachers were telling him out cute he was.

Here is the link to the video:  http://www.youtube.com/watch?v=EwWBU0z7oks

We also have to give a huge thanks to Melissa Brunner and her husband Doug.  They are such wonderful and patient people.  Jaxon was all over the place and Doug just kept following him around up and down with the camera.

It's these sort of organizations and people with huge hearts and love for children that give people with disabilities a chance.  Everyone deserves a chance to learn independence and enjoy the great things in life.

1st Day of Preschool

He's pretty excited.

Jaxon had his 1st day of preschool today.  I thought I was ready for today, but I wasn't as ready as I thought.  When I helped buckle him into the school bus seat, he looked up at me with big scared eyes.  They were asking "what is going on Mom."  I felt terrible just walking away.  A few tears later Jason and I went to breakfast and then went to the school to observe his 1st day.  Each classroom has a 1 way glass window so you can watch from the hallway without the kids knowing and then there are headsets so you can listen to everything in the room.  It's really nice to be able to see you child in their own environment without them knowing.  His teacher, Mrs Moody, encourages you to come watch anytime.  She is great.  Each day we get a Daily Sheet telling us how his day went.  Then there's a weekly report, and a notebook that goes back and forth everyday for us to write notes and the teacher can also write additional things for us.  She has such and open door policy it makes us feel really good.

My Little Dude.  

As we watched him it was like he had grown a couple years over night.  He was playing in the water bin just like all the other kids.  He colored pages, tried to eat the crayons :)  It sure made Jason and I feel better seeing him having such a good time.  The teacher came out to visit while the kids were coloring.  She said he hollered for Ma Ma when he 1st got off the bus, but got over it quickly.  These teachers are amazing.  They continually make him use words, even if they aren't perfect, to ask for things.  I love the independence they encourage.

He will go 3 days a week for 3 hours each day.  After I get used to putting him on the bus, I'm sure I'll love having 4 hours to myself.

Proud Daddy

3 years ago, we were wondering if we would ever get to take this precious little boy home.  Today he is the strongest person I know.  No matter what life throws at him, he fights through it all.  We couldn't ask for more from such a little person.  I know God has great things in store for Jaxon and I can't wait to see his life unfold.

Off to School on the Bus

After school I figured he would be ready for a nap.  Oh no he wanted to watch cartoons and eat coco puffs. It was a great 1st day!!

Friday's Quote

You've developed the strength of a

draft horse while holding onto the delicacy

of a daffodil ... you are the mother,

advocate and protector of a child

with a disability.

Lori Borgman

Happy 3rd Birthday Jaxon Steven

Today is Jaxon's 3rd birthday.  We had a small party for him last weekend.  He wasn't quite sure what to think of all the people in his house but he enjoyed seeing everyone.  Below are a couple pictures from the party.  Yesterday he was invited to a breakfast with 10 other kiddo's getting services at Capper Foundation to have breakfast with the penguins at the zoo.  It was so much fun.  In addition to the penguins, he petted a tarantula, and got to feed giraffe's.  It was a very fun morning.

Today for his actual birthday we celebrated at Going Bonkers.  Jason and I wanted to do something fun this morning but stay cool.

Going down the slide all by himself

He loved it!! (sorry blurry daddy's not real good with the camera yet)

Being 3 is just hard work

Down the big slide with mommy

We are so proud of this little man.  He has fought so many battles and overcome so much in his short life.  And he is still the most happy go lucky little kid I know.  We can't wait to see what he has in store for us in the future.

Using the Walker at Easter Seals Capper Foundation

Jaxon is using his walker so much better.  In these pictures he is getting a little tired.  He had already walked a long way.  I am so extremely proud of him.  He could just give up and cry and throw a fit, but he doesn't he just keeps on going.  Ok maybe he gets a little distracted as we walk by every open door but hey who doesn't wanna see that cute face.  Jaxon was invited to a private breakfast with 10 other kids from Capper's to see the new penguin exhibit at the zoo in July.  I can't wait.  It will be just a couple days before his birthday.  What a great birthday.  Sad part is Daddy can't come, but we will take lots of pictures.

Farm Pictures

A few pictures of our corn just coming up and the wheat starting to turn.  And of course me and my buddy riding the 4 wheeler.

Checking the Corn

Pretty Rows

I love when the Wheat is just starting to turn

Hi Daddy

Father's Day 2012 @ Tarc Park

We took Jaxon to the TARC park in the morning and then took Daddy out to lunch before I headed off to work.  We had a great morning.  It was a little muggy but Jaxon didn't seem to notice.

He loves playing ball in the tunnel

Cheering for himself.  I love this little boy

Peek a Boo

Counting with Daddy

Mommies turn

Daddy swings so much higher

I've got this Dad I'm a big Boy