History

Gotcha!

1 year ago today we legally became a family of 6!

Sunday, September 20, 2009

We haven't gone missing...just been busy! :)
We knew things would be difficult but we had no idea that over a year into this life would still be total chaos.
I am hoping to update more soon.

He didn't have to wake up
He'd been up all night
Layin’ there in bed listenin’
To his new born baby cry
He makes a pot of coffee
He splashes water on his face
His wife gives him a kiss and says
It gonna be OK

It won’t be like this for long
One day soon we'll look back laughin’
At the week we brought her home
This phase is gonna fly by
So baby just hold on
‘Cause it won't be like this for long

Four years later ‘bout 4:30
She's crawling in their bed
And when he drops her off at preschool
She's clinging to his leg
The teacher peels her off of him
He says what can I do
She says now don't you worry
This’ll only last a week or two

It won’t be like this for long
One day soon you'll drop her off
And she won’t even know you're gone
This phase is gonna fly by
If you can just hold on
It won’t be like this for long

Some day soon she'll be a teenager
And at times he'll think she hates him
Then he'll walk her down the aisle
And he'll raise her veil
But right now she's up and cryin’
And the truth is that he don't mind
As he kisses her good night
And she says her prayers

He lays down there beside her
‘Til her eyes are finally closed
And just watchin’ her it breaks his heart
Cause he already knows

It won’t be like this for long
One day soon that little girl is gonna be
All grown up and gone
Yeah, this phase is gonna fly by
So, he's tryin’ to hold on

‘Cause it won’t be like this for long

It won’t be like this for long

Wednesday, August 12, 2009

Please make sure to buy a Blizzard tomorrow (August 13th)!
We will be at the Apple Valley DQ at 7pm...if you are able we would love to see you!

Thank you!

Monday, June 1, 2009

Jaxon is 8!

It is so hard to believe that Jax is 8...time goes so fast!

Jaxon is growing up to be a pretty amazing little man. He is incredible at math, he loves to read and he can pitch and hit a baseball with the best of them!

Jaxon loves birds and is often found sitting on the window seat with binoculars and his bird books checking out all the birds that come into our yard.

Jaxon continues to have a really mature sense of humor and vocabulary...he can easily carry on a conversation with anyone. :) Every teacher at his school is wrapped around his little finger! (The nurse even helps him do his schoolwork when he is in with her.)

All in all Jaxon is one amazing kid! :)

Happy 8th Birthday Little Man!

We love you!

Friday, April 17, 2009

HAPPY BIRTHDAY MRS PAM! :)

Things are going pretty well here. We are staying busy with school/appts/activities...seems like we never stop! :)
TJ has been having a hard time lately, he doesn't want to eat or sleep or listen to anyone...he just does what he wants (which isn't always a good thing)! We are working closely with his doctors and therapists and we are sure that this will pass soon. (At least we are really hoping that it will, he was underweight to start...now he looks sickly.)

Jaxon is still battling daily headaches plus his feet (falling asleep) have been more and more of an issue. We are sending his files out to several doctors across the US and we are hoping that someone will have an answer!

Spring is finally here and the kids are loving being able to play outside again! We are getting our garden ready and soon we will be able to plant.

Thanks so much for stopping by to check on the kids!

Robin is...

Happy Birthday Robin! We love you!

Happy 5th Birthday TJ!

Tuesday, February 3, 2009 1:47 PM CST

Wow...it is February already!

Things continue to go well here...the kids are on the mend after ALL having strep. Jaxon is still having lots of headaches and we just can't seem to figure out a way to help him.

Robin, Jaxon and Amber had their first communion this past Sunday. It was pretty exciting! Robin continues to be really involved with church and she loves it.

R, J and A are starting a sign language class soon so that they will be able to communicate even more with cousin River. (They also love having their own language in public...it's pretty fun!)

TJ turns 5 next week! It is so hard to believe that he is that old...he is a peanut with a cute little voice. We are very excited to celebrate his first birthday with us! Right now he is lying under my chair barking like a dog…he is a goofy guy!

All in all, things are going great! We are STILL adjusting to being a family but it is getting a little easier every day.

Thanks for still checking in on the kids! I will update soon with pictures of our big 5 year old!!

Merry Christmas! 2008

Things are busy around here as we get ready for our first Christmas as a family of 6!

Last week was full of plays, activities and parties at school...TJ even had a visit from Santa at his school! The kids are now off school for 2 weeks and they are already driving me crazy! :)

We are planning on having a pretty low key Christmas...just hanging out at home, going to church and maybe a movie. It will be emotional for Amber and TJ so we don't want to make it stressful at all. (This will be their first Christmas without their birth mother.)

We have been focusing on 'giving' this holiday season and the kids have been really great about it...we brought gifts to a shelter for abused mothers and their children, we made cards for soldiers and people in nursing homes and this past weekend we went to 'Feed my Starving Children' and packaged meals for starving children (mostly in Haiti).

'Feed my Starving Children' was a really cool experience, the kids thought it was fun getting all dressed up with a hairnet and apron and bagging the food. They were amazed by the stories of the kids that get the food...it is hard to believe that people live in such poverty. We went with a group from our church and we packaged enough meals to feed 2 orphanages full of kids for a year!

Jaxon is still having a really difficult time with pain...we are looking into other doctors and treatments. It is frustrating to see him hurting and knowing that there is nothing we can do to help.

Amber and TJ continue to adjust well. Their therapists are impressed with how well they are doing...it is all starting to feel 'normal'. I think we all feel much more relaxed the past few months.

Robin is doing so well! She is on the student council at church and helped give the youth sermon a few weeks ago. She has been loving all the 'giving' that we have been doing and is ready to go to Haiti herself to help these kids...we have no doubt that she will someday!

We hope that you all have a happy, fun & safe Christmas!

Happy Thanksgiving!

We have SO much to be thankful for this year!

*Our 4 incredible children!
*The adoption went so quickly & smoothly...and we got to work with some amazing people.
*Jaxon hasn't had a surgery in almost 2 years. (knock on wood)
*Awesome friends that have gone above and beyond to welcome Amber and TJ into our family!
*Jared and I celebrated our 10th Anniversary this past weekend.
*Gas prices are down so we can visit family in MO for Thanksgiving! :)
*Great family that loved Amber and TJ before they even met them!
*During a tough time Jared was able to find a job fairly easily (and that job is with a great company).
*That Amber and TJ are fitting in so well...they fight/laugh/whine/yell/giggle/cry/smile just like Robin and Jaxon.
*That Robin and Jaxon are doing so well with having 2 new siblings.
*Another year of watching our kids grow...
He didnt have to wake up
He'd been up all nite
Lay'n there in bed listen'n
To his new born baby cry
He makes a pot of coffee
He splashes water on his face
His wife gives him a kiss and says
It gonna be OK

It wont be like this for long
One day soon we'll look back laugh'n
At the week we brought her home
This phase is gonna fly by
So baby just hold on
It wont be like this for long

Four years later bout four thirty
She's crawling in there bed
And when he drops her off at preschool
She's clinging to his leg
The teacher peels her off of him
He says what can I do
She says now dont you worry
This will only last a week or two

It wont be like this for long
One day soon we'll drop her off
And she wont even know your gone
This phase is gonna fly by
If you can just hold on
It wont be like this for long

One day soon she'll be a teenager
And at times you'll think she hates him
Then he'll walk her down the isle
And he'll raise her vale
But right now she up and cry'n
And the truth is that he dont mind
As he kisses her good night
And she says her prayers
He lays down there beside her
Till her eyes are finally closed
And just watch'n her it breaks his heart
Cause he already knows
It wont be like this for long
One day soon that little girl is gonna be
All grown up and gone
Yeah this phase is gonna fly by
He's try'n to hold on
It wont be like this for long
It wont be like this for long
-Darius Rucker

We hope that you have a wonderful Thanksgiving!

Tuesday, November 18, 2008 6:13 PM CST

Things are crazy here...doubling the amount of kids makes about 5 times as much laundry/cooking/cleaning...how does that work? :)

Jaxon hasn't been feeling really well the past couple months. Lots of headaches, tingling and issues with bowel/bladder control. He had an MRI yesterday that shows no change. That isn't really good news because it means that his pain/issues are getting worse and there is nothing we can do to fix them.
We are looking to get yet another opinion and to change some things around in his school schedule to see if that helps.

Our t-shirts at the adoption said:
(on the front) 10-17-2008, Forever Family
(on the back) Stuck Together
(TJ always asks 'we are stuck together, right?')

It was an awesome day and we are so happy that Auntie Jesse, cousin Jude and Grampa TJ were able to come from MO. Grandma Amy and Gramma Kerry and Laura (Amber's god-mother) were also able to be there! Plus both social workers, their child worker and their guardian...it was a crowded courtroom!
After the adoption we went to a park and then to Grampa's hotel to swim.
The next day was Saturday and we hung out with family all day...Jared's cousins (they are TJ's god-parents) were able to come with their kids and we had dinner with them and went to their hotel pool! (Lots of swimming!)
Sunday morning we had the baptism and then we had an open house...it was a great day! It was so nice for the kids to get to meet some family that they hadn't met and to play with some of their cousins!
It was a long crazy weekend and by the end we were exhausted! It was so worth it though...we will never forget it! :)

Thanks so much for checking up on the kids!

Tuesday, November 4, 2008 1:10 PM CST

Remember to VOTE!

I have a few new pics up on the photo page.

Friday, October 31, 2008 9:24 AM CDT

We have been a *REAL* family for 2 weeks today!

The kids are excited for Halloween!

I will update soon with photos from court, the baptism and Halloween!

-Heather

Monday, September 22, 2008

*new pics in photo section*

School is off to a good start for Robin, Jaxon and Amber. They are all enjoying it and doing well! Amber has transitioned to the new school so well, she has lots of friends and has already been invited to a friends birthday party! :)
Teddy keeps me busy at home! He requires constant supervision and is always getting into something. He was tested by the school district and isn't quite where they would like him to be, so he will start ECSE (early childhood special ed) soon.
The addition of 2 kids has been a lot for us all (and for them). We are all really tired and overwhelmed but we are also really happy. :) We are all learning about each other (Amber loves Jon & Kate plus 8, Teddy loves breakfast cereal) and it is pretty cool!
Legally things are going well...we have a court date and in just a few weeks they will really, truly, legally be ours!
We can't wait!

Thursday, September 11, 2008

God Bless The U.S.A.
by Lee Greenwood

If tomorrow all the things were gone,
I’d worked for all my life.
And I had to start again,
with just my children and my wife.

I’d thank my lucky stars,
to be livin here today.
‘Cause the flag still stands for freedom,
and they can’t take that away.

And I’m proud to be an American,
where at least I know I’m free.
And I wont forget the men who died,
who gave that right to me.

And I gladly stand up,
next to you and defend her still today.
‘Cause there ain’t no doubt I love this land,
God bless the USA.

From the lakes of Minnesota,
to the hills of Tennessee.
Across the plains of Texas,
From sea to shining sea.

From Detroit down to Houston,
and New York to L.A.
Well there's pride in every American heart,
and its time we stand and say.

That I’m proud to be an American,
where at least I know I’m free.
And I wont forget the men who died,
who gave that right to me.

And I gladly stand up,
next to you and defend her still today.
‘Cause there ain’t no doubt I love this land,
God bless the USA.

And I’m proud to be and American,
where at least I know I’m free.
And I wont forget the men who died,
who gave that right to me.

And I gladly stand up,
next to you and defend her still today.
‘Cause there ain’t no doubt I love this land,
God bless the USA.

Wednesday, August 20, 2008 8:53 PM CDT

Sorry for the lack of updates...

We have certainly gotten past the 'honeymoon' stage with TJ. He keeps us on our toes 24 hours a day.

Robin, Jaxon and Amber are all doing well. It has been a huge adjustment but they act like they have been siblings forever. :)

The kids are excited and nervous for school to start (2 weeks). Jaxon and Amber will be in 2nd grade and Robin will be in 4th! TJ will not be starting preschool like we had planned...we are hoping to get him into a day treatment program instead.

Thanks so much for checking on the kids...hopefully when school starts there will be more time to update!

Thursday, August 7, 2008 9:23 AM CDT

We will be at the Apple Valley DQ tonight from 6:30-8! (Gotta love a reason to have DQ!)

Hope to see you there!

Friday, August 1, 2008 0:14 AM CDT

Things are going well here...just very busy!

Teddy did have surgery for his hernia last friday, he was up and running around the same day! Nothing slows that kid down...he is a wild man!

Amber had her 7th birthday this week! She is such a sweet girl. She is shy to the point of it seeming a little rude when you first meet her but once you get to know her...she has a smile that just melts you!

4 kids has us pretty tired! We are running non-stop! :)
Honestly though...we wouldn't change a thing. This whole experience...the 4 kids...all amazing!

We will try to update soon with pictures!

Sunday, July 6, 2008

The 4th was a lot of fun...all the kids liked the parade and our neighborhood had some great fireworks!

After the fireworks we ended up taking TJ to the ER, he has a hernia. It went back in by itself in the ER so we are able to wait until this week to see a surgeon. Never a dull moment here!

The kids are all doing pretty well otherwise. They are all adjusting really well...they have been staying pretty busy with the slip-n-slide and the neighbors pool. :)

Jaxon has been having quite a few headaches...hopefully it is just from so much excitement recently.

Thanks so much for checking in on the kids! I will update after TJ's doctor appointment.

We hope that you all had a safe and FUN 4th of July!

Friday, June 27, 2008

Jared had an interview for a job Monday and he started today! Things sure change fast around here! :)

The kids are all doing well...everyone is looking pretty tan from playing outside all the time. They seem to spend all day on the slip-n-slide or riding their bikes!

Tonight Teddy fell asleep laying on me...it is amazing that we have only known them for 3 weeks.

It's not all fun and games though! The cat got a haircut (have to hide scissors from 4 year olds!), there have been LOTS of time-outs & the kids all fight like siblings! :) Jared and I have never been so tired...it is so completely worth it though!

Middle names have been decided on!
We picked Teddy's because he is still pretty young, Amber got to help pick hers.
So....we have....

Theodore James and Amber Rose

(Mrs Pam, we are calling him Teddy and TJ at this point. Eventually we will just call him TJ.)

I will try to update with new photos soon!

Saturday, June 21, 2008 10:47 AM CDT

Things are going well here! They moved in on tuesday and we pretty much have everything unpacked and put away.

It is a lot different with 4 kids...it forces us to be much more organized! :)

Jared is still off of work, we are hoping that he will go back in the next few weeks. We do not think that he will get his old job back (doctor won't say that he can get his cdl back) but we are hoping that he will find something new quickly.

I am adding some new pics in the photos section.

I will update some more soon!

Our 4 kids!

It went so well! We went to a park and then to get some ice cream...the kids played together really well. :)

Tomorrow they get to come visit our house for a few hours!

We will update soon!

Friday, June 6, 2008 6:40 PM CDT

Jared and I met Amber and Teddy today...they were a little nervous at first (so were we!) but by the end of the visit we were having a blast! :)
Tomorrow Robin and Jaxon meet them!

Some pictures....

We will update more soon!

Sunday, June 1, 2008 HAPPY 7TH BIRTHDAY JAXON!

Jaxon's taekwondo birthday!
Breaking a REAL board!

Taekwondo cake (even with a camo belt)

Happy Birthday 'little man'! We love you so much!

Thursday, May 29, 2008

We have a transition plan! Jared and I meet the kids for the first time next Friday (8 days!), Robin and Jaxon meet them for the first time next Saturday. We have lots of visits over the following week and a half and then they move in on the 17th of June.

It is crazy how fast this is all going! We are so excited and nervous! It will be good to have the summer to adapt a little before we get into the business of school.

Things have been going pretty well here...Robin and Jax have about 2 weeks left of school. The have been keeping busy with field trips, homework and taekwondo.

Jax has been having lots of issues with headaches and stuff again. We have some calls in to his doctors and hopefully we can figure out a new plan to help with that.

We will update soon! Please keep Amber and Teddy in your thoughts and prayers as they go thru this emotional/difficult time.

-Heather and Jared

Sunday, May 18, 2008

**New photos...May 18th**

Things are going well...we have the rooms moved/painted/set up and we can't wait to meet Amber & Teddy's 'team' this week.

Robin and Jaxon are doing well...they have been really busy at school with plays, field trips, testing...summer is almost here!

Jared is still home from work...we are hoping that he will be able to go back sometime in June. At first the timing seemed terrible because we thought it would prevent us from getting Amber and Teddy...but now it is almost a blessing that Jared can attend all the meetings without missing work.

Things just seem to keep falling into place...almost like it was meant to be. :)

We will keep you updated!

Friday, May 9, 2008 & update 5-14

Update Wednesday:

Next week we will have meetings with their foster mother, schools, etc...we will start getting all their medical records, school records...

Lots of people have asked about their health...we went into this planning on adopting children with medical needs...plans change. :)

Amber and Teddy do not have any special medical needs but they do need lots of love and support to get over some trauma. Older kids & sibling groups are considered special needs because they can be harder to find homes for.

Adoption is such a mix of emotions...our workers like parents not to 'see' the kids until they know all the facts...so at this point we have not even seen a picture of them...it is such a weird feeling to know that OUR kids are out there and that we don't even know who they are yet.

So...it has just been exciting and emotional here...Robin and I have been doing some MAJOR shopping! Clothes, toys, bikes, car seats...the list goes on and on... :) We are loving every minute of it!

Thanks so much for checking in on us. We will update more soon!

They are ours!!!

Amber and Teddy will be coming to live with us this summer!

Thanks so much for all the support and prayers...we will update more soon!

Wednesday, April 30, 2008 3:31 PM CDT

Never a dull moment...

In all of the chaos of getting ready to be interviewed for this potential placement we also have been dealing with Jared home on disability.

He is a truck driver and at his recent annual physical he had his CDL (commercial drivers license) pulled due to his sleep apnea. We are battling with the doctors to get it back but it will be at least a month. So right now he is going crazy at home...he is BORED!
This also makes the whole adoption process a little harder...they like you to have a job! :)

About the kids...
A 6-year-old girl, Amber, and a 4-year-old boy, Teddy. Amber is just 2 months younger then Jaxon! We have read all about them and we really feel that they would 'fit' well in our family.
We have the first meeting with their team next week. Right now we are the only family that they are considering.
Nothing is certain...it is so hard not to get our hopes up!

And because they (social workers) push you to keep all your options open, we went to our first 'Match Meeting' today...it's like speed dating but with adoptive parents and social workers. We heard about several more kids/groups that we are going to apply for.

All in all things are going well, just very busy!

We will update more soon!

Tuesday, April 22, 2008

We do want to update more on the adoption but we want to be careful about who can read it (these kids are wards of the state and they do have family that is local)...so we will be password protecting this site.
If you would like to get the password info please email me at
heather@bumblebeephotography.net

Thanks!

Thursday, April 17, 2008

We have received a call back on a brother and sister that need a 'forever home'.

We are praying that they find the family that they are meant to be in...maybe it's ours...

KISSES IN THE WIND

I hold you in my heart and touch you in my dreams.
You are here each day with me, at least that’s how it seems.

I know you wonder where we are… what’s taking us so long.
But remember child, I love you so and God will keep you strong.

Now go outside and feel the breeze and let it touch your skin…
Because tonight, just as always, I blow you kisses in the wind.

May God hold you in His hand until I can be with you.
I promise you, my darling, I’m doing all that I can do.

Very soon, you’ll have a family for real, not just pretend.
But for tonight, just as always, I blow you kisses in the wind.

May God wrap you in His arms and hold you very tight.
And let the angels bring the kisses that I send to you each night.
— Unknown

We will keep you posted. :)

Tuesday, April 15, 2008 3:13 PM CDT

Things have been pretty crazy around here…

Robin has been into the clinic with all sorts of aches and pains…ends up that she is dealing with depression.
She has not been herself for almost 2 months and there is nothing we can do to make her feel happy. It is so hard to see her this way…we feel really helpless. People seem to think that we can tell her that things are fine and that it is silly to worry and that that will make things ‘all better’ but it isn’t that easy to fix this. She isn’t being crabby or a drama queen…she is dealing with a real medical problem.
We have been in to the doctor and have done a lot of blood work, tests and she is starting some new meds. Hopefully we will see an improvement soon.
Robin’s mild CP has been an issue recently too…she is having a tougher time with a lot of the stretching and balancing in taekwondo. She still likes it though and she is really pushing herself to do her best. She and Jax both graduated to camouflage belt last week!

Jax is still dealing with the headaches, they seem to be staying pretty consistent as far as how many and how severe. He has ‘outgrown’ his sleeping meds so he is starting something new. Other then that he is just keeping himself busy with riding his bike (now that the snow is FINALLY gone).

The adoption stuff is going well, we are just applying for kids and waiting to hear from their workers. We have our first match meeting at the end of this month (we go and talk with lots of social workers and pretty much just network…) it should be interesting!

Thanks so much for checking in on the kids!

Wednesday, April 9, 2008 10:49 AM CDT

Things are going pretty well here!

The kids both test for their camo belts in taekwondo this weekend and next weekend they are in their first tournament!

Jax has been having some headaches and lots of trouble with transitions...but overall he is doing pretty well!

Robin has an appointment with her rehab doctor this week...we have lots of questions for her. :)

Thanks so much for checking up on the kids...thanks to Mrs Pam and the MACS families for the cards and gifts for Robin on her birthday!

We will update more soon!

Happy Birthday Robin!

So hard to believe that Robin is 9 today!

Her favorite song right now is Miley and Billy Ray singing 'Ready, Set, Don't go' and it seems so appropriate as we watch her become her own person. She has her own likes/dislikes, she thinks for herself (maybe a little too opinionated :) , she is just getting so independent.
It is amazing to watch...and sad to watch.

'She's gotta do what she's gotta do
And I've gotta like it or not
She's got dreams too big for this town
And she needs to give 'em a shot
Whatever they are

Looks like she's all ready to leave
Nothing left to pack
There ain't no room for me in that car
Even if she asked me to tag along
God I gotta be strong

She's at the startin' line of the rest of her life
As ready as she's ever been
Got the hunger and the stars in her eyes
The prize is hers to win
She's waitin' on my blessings before she hits that
open road
Baby get ready
Get set
Don't go

She says things are fallen into place
Feels like they're fallen apart
I painted this big ol' smile on my face
To hide my broken heart
If only she knew
This is where I don't say what I want so bad to say
This is where I want to but I won't get in the way
Of her and her dreams
And spreadin' her wings

She's at the startin' line of the rest of her life
As ready as she's ever been
Got the hunger and the stars in her eyes
The prize is hers to win
She's waitin' on my blessings before she hits that
open road
Baby get ready
Get set
Don't go.'

Happy 9th Birthday Robin...we are so proud of the person that you are becoming.
We love you!
Mom and Dad

Feels good to be...

APPROVED!

Yep, we are totally, completely, without a doubt, officially approved to adopt!

Now we wait...the average wait from approval to getting your child is 1 year. It's gonna be a LONG year!

March 14th & 17th :)

I think I’ll take a moment, celebrate my age
The ending of an era and the turning of a page
Now it’s time to focus in on where I go from here
Lord have mercy on my next thirty years

My next thirty years I’m gonna settle all the scores
Cry a little less, laugh a little more
Find a world of happiness without the hate and fear
Figure out just what I’m doing here
In my next thirty years

My next thirty years will be the best years of my life
Raise a little family and hang out with my wife
Spend precious moments with the ones that I hold dear
Make up for lost time here ,In my next thirty years

In my next thirty years

Monday, March 10, 2008

Sorry for the delay in updates!

Jax is doing pretty well, it was just too much excitement for him last friday. When he tries to keep up with his friends he gets worn out, gets a headache and then gets sick.

Both kids are keeping busy with taekwondo (pics of the last graduation in the 'photos' section).

Thanks so much for the support and prayers! We will update more soon!

update 11:30pm

Jax's sleepover ended early due to headache and vomiting. Praying that it is just a viral thing and not the shunt.
We will update more later

Friday, February 29, 2008

The MRI showed no difference. So that means that the changes Jax is having aren't something that can be fixed, they are just part of the spinal cord injuries. We are feeling frustrated. We (of course) didn't want a surgery but we did want to be able to fix these new issues.
Spinal cord injury symptoms can come and go...they fluctuate for no reason at all. It is so hard for us to understand and even harder for Jaxon to understand. He is very angry with the recent symptoms...he hates being different, he hates the ‘pins and needles’ feeling that he gets so often, he hates that his hands get so purple and shake so much…
We all know that Jax is a tough kid though…he was at taekwondo just hours after his MRI. He has 2 friends coming over for a sleep over tonight. He has his bowling league on Sunday. He may require more rest then other kids, lots of meds and therapies…but he is determined to be a ‘normal’ 6-year-old boy. We are so proud of him!

Thanks so much for all the thoughts and prayers…we really do appreciate them!

Tuesday, February 26, 2008

Friday was gradutation at taekwondo...both kids got their yellow belts! We are so proud of them!

Jaxon has an MRI tomorrow and an appointment with neurosurgery thursday. We will update when we have news.

-Heather & Jared

Update Sat

We went to the dr yesterday and the cold that Robin has had is actually pneumonia. She is on nebs several times a day and antibiotics (it is a bacterial pneumonia). Jax is also on meds and nebs since he has such a weak immune system.
We are hoping that they can get over this fairly quickly! We will update soon.

Thursday, February 14, 2008

HAPPY VALENTINE'S DAY!

Things are going pretty well here...the kids are keeping busy with school and friends! They are both very excited for their Valentine parties today. :)

Jax continues to do the same, it looks like he will have an MRI and neurosurgery appt in 2 weeks. We are really hoping that it is something that they can easily fix.

The adoption process is going well. Paperwork is done, background checks are done, training is done...we have started our homestudy appointments and will hopefully have those done in the next week! Then we will be officially 'waiting'!

Thank you to Mrs. Pam and the preschool pen pals for the Valentine's gifts! Also thank you to the MACS families for the Valentine's!

We hope that you all have a great Valentine's Day!

Wednesday, January 30, 2008 10:00 AM CST

Things are going pretty well here!

Today is the last day of school for the week...conferences! The kids are excited for extra Wii time! :) I am not so excited for them to be stuck in the house for days...it is way too cold to go outside! (-20's to -30's)

Things have been fairly boring here (yeah!), lots of taekwondo, school, OT, Wii...we have been keeping busy.

Not much new medically, Robin is due for a rehab appointment for her legs and to get new AFO's. Jax needs to get in with neurosurgery. We are looking for a new neurologist and urologist. Our neurologist left the U and our urologist was really rude to Jax last time we saw him.

Jax has been getting more and more tired recently, he is very emotional and having quite a few headaches. We hate seeing him this way…he had been doing so well. The pain seems to be dull…but at the end of the day you can see that it is getting to him. His hands have been an issue recently, always ‘falling asleep’.

Thanks so much for stopping by to check on the kids! I will update more soon.

Thursday, January 10, 2008 6:13 AM CST

Things are going better here. Jax is still having headaches and all that stuff but the vomiting was just a stomach flu.
We need to see the neurosurgeon since his issues have been getting worse recently. It just seems pretty pointless since we know what the surgical options are and at this point the risks of doing another surgery just aren't worth it.

Other then that it has been pretty crazy here...we are working on the house (still!) and filling out tons of papers for the adoption. The kids are busy with taekwondo and school!

Thanks so much for checking in on the kids and for all the thoughts and prayers!

January 4th 2008

Jaxon has been extra sleepy and headache-y recently. He has started vomiting tonight.
We are hoping (*praying*) that it is something viral and not the shunt.
We will keep you updated.

Saturday, December 29, 2007

I just wanted to share a couple funny stories-

A few nights ago the kids were supposed to be cleaning their rooms (*supposed to be*). Jax was out talking to Jared and I every 2 minutes...finally Jared told him that he needed to clean his room and to 'hop to it'. Jax looked a little confused...then hopped to his room. He is so literal! Jared and I were laughing and Jax says 'you told me to hop', not seeing any humor in it at all.

Robin was walking down past Jared in a shirt that says 'it's not easy looking this good' .Jared read it out loud and then laughed. Robin looked at him all serious and said 'it really isn't that easy, I have to shampoo, condition...'

Seriously, what did Jared and I do for entertainment before the kids! :)

We hope that you all had a great Christmas!

If you hear screaming coming from our house...

Have a great Christmas!
Love,
Jared, Heather, Robin & Jaxon

Our Christmas Letter - 2007 - written by Robin

Dear Family and Friends,
I hope you had a good 2007!
This year we went on our Sunshine Foundation Dream Trip to Florida. It was fun! We saw Disney World and Sea World! We saw the ocean too! My favorite part was when I got to pet a dolphin and got a pearl from an oyster. Jaxon’s favorite part was going to see Shamu. We had lunch with Shamu and his trainers. We got to see him up close! We also saw a new baby whale. At Sea World we got to see the most awesome thing...it was a really cool whale show!
We’ve got good news...Jaxon hasn’t been in the hospital for a year! He still has headaches sometimes but he’s ok. He still has a lot of doctor stuff to do. Jaxon is in first grade and he has 2 best friends.
Jaxon (and me) are super excited because...we got a new kitten named Bridgette! Want to know what’s funny about Bridgette? Her middle name is Butt! I named her after my favorite book.
This year I have been doing super! I am in third grade and I love my teacher! I am excited because High School Musical 2 came out and it was really awesome! I listen to the songs all the time in the car and I know all of them. (Daddy even knows all of them; he loves to sing them with me! :)
I got my ears pierced! (So did Jaxon but he only got one.)
Jaxon and I are doing taekwondo this year. I am a white belt and I will get my orange belt soon. The teacher says that I am really good and loud! The teacher says that Jaxon is good too (for a white belt).
Daddy started a new job this year, he works a lot but I think he likes it.
We have some exciting news...we are adopting a child! It might be a boy or girl, it might have special needs and it might be a baby or a toddler. I am hoping for a girl! Mom and Dad have been doing lots of classes and paper work. They say that the baby might be here by next Christmas!

We hope that you have a Merry Christmas and a Happy New Year!

With Love and lots of Hugs,
Robin

(And Mommy, Daddy & Jaxon)

‘Around here, however,
We don’t look backwards for very long.
We keep moving forward,
Opening up new doors
And doing new things…
And curiosity keeps leading us down new paths.’
- Walt Disney

Tuesday, November 20, 2007

Things are busy here!
The kids started with martial arts again and Robin is loving it! Jax is still really nervous about people watching him...but he is doing well.
Jax has been having quite a bit of anxiety and headaches...we are hoping that this will pass.
The kids are really looking forward to some time off from school this week! They love school but they love time at home even more. :)

Please continue to keep Jared's grandpa and his family in your thoughts and prayers...

Thank you!

Wednesday, November 14, 2007

Please keep Jared's grandpa (and his family) in your thoughts and prayers...

HAPPY HALLOWEEN!!!

HAPPY HALLOWEEN!

Wednesday, October 24, 2007

The kids are keeping busy with school, therapies and playing with their friends!

Last week we had conf for both of them and we are so happy to report that they are both doing AMAZING! We are so proud of them!

Jax was really behind last year and gets lots of extra help...but now they aren't sure that he needs it anymore! He is learning SO fast!

Robin is (of course) doing SO well at reading and spelling! The teacher commented on how expressive she is when she reads out loud. (At home we call this being a 'drama queen' :)

Jax is still dealing with daily headaches and lots of leg pain. It does seem to be getting worse and we are worried. We know that Chiari kids have a hard time with the changing seasons/weather...so we are just watching and waiting.

We had a pretty exciting weekend here...Robin got her ears pierced, Jax got his ear pierced and we got a new cat! (pics in the photo album)

That's pretty much everything that is going on here...
Thanks so much for checking in on the kids!

Monday, October 15, 2007

This sunday on Extreme Makeover Home Edition the featured family is a mom and daughter with Chiari.

Things are going well here, we have conf and MEA this week...so NO SCHOOL! It has been raining so we rented a bunch of movies and are watching those. :)

There are some new pics up on the photo page.

Monday, October 15, 2007

Friday, October 12, 2007

We are keeping busy with school, homework, therapies and lots of playing! :)

Jax is still getting headaches but they are pretty manageable. Robin is having a harder time this year keeping up with other kids in gym due to her asthma and leg strength issues. They are letting her do a little less then the other kids now and it seems to help.

Jax has been having a tough time adjusting to whole days so we are seeing a lot of explosive behavior at home...we have a school meeting next week and we may talk about shorter school days for him.

Jax's behavior keeps us all a little on edge...but at the end of the day we are all sleeping in our own beds, no one is in the hospital...so we are pretty happy. :)

Thanks for checking on the kids, please sign the guestbook if you have a minute!

Tuesday, September 18, 2007 2:56 PM CDT

Things have been going pretty well here...just crazy busy with school starting!

Robin is loving 3rd grade! She thinks her new teacher is great and she is making lots of friends in her class. She has lots of homework this year but she is handling it pretty well.

Jaxon likes 1st grade...he likes his teachers and he has made some new friends. Being in school all day has been a challenge, he has been having a lot more headaches and has been getting really stressed out at home. He can 'hold it together' while he is at school and then kind of 'let it all out' when he gets home. We are hoping that as he gets used to the new schedule it will go better.
We have already had a meeting with the school and his teachers and we are working on some ways to make this whole thing less stressful for him.

Other then that...we are pretty boring here...
Jared is still doing well at the new job (not so new anymore) and we are still working on the house (we are SO CLOSE to being done)!

Since I don't have much to write...here is what the kids are doing/loving now...

Books:
Robin- Hairspray
Jaxon- Magic Tree house

Music:
Robin- Hannah Montanna (yes, we tried to get tickets...but seriously, I am NOT spending 500 a ticket!)
Jaxon- don't know who sings it...but the country song 'I'm so much cooler online' :)

TV:
Robin- Hannah Montanna
Jaxon- ANYTHING on Animal Planet

Movies:
Robin- Ella Enchanted
Jaxon- Ghostbusters

And a couple cute/funny moments recently:

-We are driving looking for garage sales, kids start whispering in the backseat (I know they are thinking up something)...then they yell out 'look mom, we just saw a hooker!' Imagine my shock, a hooker in Farmington! And how in the world do my kids know what a hooker is?!?!
I (trying not to cry from laughing so hard) ask 'where do you see a hooker?' On the corner they say...so I ask what they think a hooker is...'you know, a sign to hook us in to going to their garage sale....a hooker.'

-We had a big night planned last week...Burger King with some of the neighbor kids. When they got home from school they did their homework and chores and then got ready to go. Jax comes walking out of his room...wearing a button up shirt, dress pants, a tie, a sweater vest and his hair all done up with gel. He told me he was ready for his 'fancy' night out. I have got to get these kids out of the house more! :)

Have a great week!

First day of School! 2007

Watch this!

Saturday, September 1, 2007

Robin's MRI results are stable, so that is good. We hoped for the mass to be gone...but we will take stable!
Her eyes have been bothering her, she has been seeing funny lights for no reason, we saw the neuro-opth and they said that she just has dry/irritated eyes, so she just needs some drops...they said that everything else looks great!

The kids are nervous to start school next week. We were able to go to the open house and meet the teachers, they seem so nice! Jax has his same aid from last year (YEAH!) and Robin found that she has some friends in her class!

Both kids got haircuts for school...they are so cute! (New photo up top, the blue will wash out! ;)

I will update soon with news from the first day of THIRD and FIRST grade!

Thanks for checking on the kids!

Saturday, August 18, 2007 11:51 PM CDT

Things just get crazier as we get closer to the end of summer break. Both kids have had tons of appointments and have lots more in the next couple weeks!
Robin will be having an MRI on tuesday to check the mass in her pituitary gland...we have reason to believe that it is growing (although we hope not)!
Please pray that everything is stable on the MRI, or better yet, that the mass is gone!

I will update later this week when we hear the results.

Thanks for checking on the kids!
~Heather and Jared

Miracle Treat Day! Thursday, August 9th

Like you need a reason to go to DQ! :)

Dairy Queen's Miracle Treat Day is right around the corner. On August 9, participating Dairy Queen locations nationwide will donate the proceeds from the sales of the Blizzard Treats to the local hospital that benefits from funds raised through Children's Miracle Network. Here in Minnesota, that means that funds raised will support Gillette Children's Specialty Healthcare.

Last year, Miracle Treat Day raised more than $5.3 million in North America including more than $250,000 in Minnesota!

What can you do to help?

1.Anytime between now and August 9, visit www.miracletreatday.com and click on “Pledge to buy a Blizzard.” And while you are there, enjoy the introduction, all of the kids on the front page of the site are children who are treated at Gillette.

2.On August 9, go and buy a Blizzard.

3.Buy Blizzards for your family.

4.Consider buying Blizzards for your office, social group, sports team, etc. Not only are you supporting a great cause, but it can be a great morale booster for any group or team.

5.How can I place a group order? Just go to www.miracletreatday.com. There you will find a box on the lower right-hand side where you can type in your zip code to find your nearest participating location. Simply call them and ask if they are accepting group orders. If so, you can fill out the attached form and fax it to them. On Miracle Treat Day head to your Dairy Queen at the set time and pick up your order.

6.Pass this e-mail along to your friends, family and co-workers and encourage them to do the same.

Thank you and happy eating!

WE WILL BE AT THE APPLE VALLEY DQ AROUND 8PM ON THURSDAY! WE WOULD LOVE TO SEE YOU THERE!

~Heather, Jared, Robin and Jaxon

Update wed night

Please pray for everyone affected by the collapsing of the 35W bridge. We are all ok here...thank God.
Contact the Red Cross to help, there is a need for more donors/blood.
1-800-GIVE-LIFE

Tuesday, July 31, 2007 (new photos in album)

Can you believe it...4 years since all this started! We didn't know how we would make it thru that first surgery...and now we have been thru so many...Jaxon has been sedated about 50 times. Just under 20 for surgeries, the rest for other tests (like MRI's). Wow.

Both kids had appointments today...
Jax has been having more headaches recently, he came home early from school today with a major headache. We are upping his pain meds.
Robin has a sore throat (allergies) and has been having lots of tummy troubles. She has pretty weak muscles and that makes it very difficult for her to go to the bathroom. We are going to do some more testing and see if there is anything that we can do to help.

This past weekend we were able to get up north and visit with Jared's family. The kids had a blast with their cousins and seeing the cows! :)

This coming weekend we are heading down to MO for River's 2nd birthday party! We are so excited to see him!

Jax has just 2 days left of summer school then we are back to summer vacation for 4 more weeks!

The appointment last week at Fraser went well, they did add to the disgnosis that Jax already has...so now it is Aspergers, ADHD, adjustment disorder, anxiety due to medical issues and a sleeping disorder (insomnia). They are also getting him set up for some other appoinments. We will see the sleep doctor to see why Jax isn't sleeping (they are thinking restless leg or nighttime seizures). We also have some things that we will add to his IEP at school and a bunch of other stuff like that. Basically lots of appointments and lots of paperwork! Fun, Fun! :)

That is pretty much all the news for today...

We really want to thank you ALL. 4 years of this and you are all still right by our sides...praying, supporting us, encouraging us...it means so much. These past 4 years have been full of so many highs and lows...there just isn't any way to describe it...we could not have gotten thru it without the support of all of you. Thank you!

'Find Out Who Your Friends Are'

Run your car off the side of the road
Get stuck in a ditch way out in the middle of nowhere
Or get yourself in a bind,
Lose the shirt off your back,
Need a floor, need a couch, need a bus fareï¿½

This is where the rubber meets the road
This is where the cream is gonna rise
This is what you really didn't know
This is where the truth donï¿½t lie

Find out who your friends are
Somebodyï¿½s gonna drop everything
Run out and crank up their car
Hit the gas, get there fast
Never stop to think ï¿½whatï¿½s in it for me?ï¿½
Or ï¿½itï¿½s way too farï¿½
They just show on up
With their big olï¿½ heart
Find out who your friends are.

Everybody wants to slap your back
Wants to shake your hand
When youï¿½re up on top of that mountain
Then one of those rocks will get wet
And you slide back down
Look up and see whoï¿½s around then

This aint where the road comes to an end
This aint where the band wagon stops
This is just one of those times when
A lotta folks jump off.

Find out who your friends are
Somebodyï¿½s gonna drop everything
Run out and crank up their car
Hit the gas, get there fast
Never stop to think ï¿½whatï¿½s in it for me?ï¿½
Or ï¿½itï¿½s way too farï¿½
They just show on up
With their big olï¿½ heart
Yeah find out who your friends are.

When the waterï¿½s high
When the weatherï¿½s not so fair
When the well runs dry
Whoï¿½s gonna be there?

-Tracy Lawrence

Monday, July 23, 2007

We are SO far behind in updates!

I am going to try to recap the big things. (I may have said some of this before...sorry! :)

Our Sunshine Foundation trip was AMAZING! We had nothing but fun...it was stress free...the kids didn't even fight with each other! It was honestly the most perfect 'break' from our normal lives...we will never forget it.

Right before the trip Jared started a new job...the hours are LONG but the insurance is great! Much better then what we have had. It is a huge adjustment for us to have him gone pretty much all day, Monday thru Friday...but we are getting a little more used to it!

The end of school was hard for Robin, her teacher (that came in half way thru the year, after the first teacher unexpectedly retired) is not staying at the school...Robin is going to miss her so much.
Robin did awesome in school this year! She is doing lots of reading this summer and she is getting excited for 3rd grade!

Jax had a hard time with the end of school too...he doesn't do well with change so the first few weeks of summer were really hard for him.
He did very well this year socially and not quite as well academically. He is in summer school and will start to receive quite a bit of extra help next year.
Due to the amount of trauma that his brain has been thru they do not think that it would help him to hold him back...they aren't sure that he will ever 'catch-up', so they feel that it is best that he go into first grade and just get extra help.
We had our primary care doctor and our psychologist from Fraser with us at this meeting...we talked a lot about it and decided that they are right, it is the best option. So he will be in first grade this fall!

The kids walked in the 4th of July parade with a friends work, they got to hand out candy and they loved it! Then we spent the afternoon swimming and grilling and our neighborhood had its own fireworks that night! The kids had a great time with the snaps and sparklers!

Robin (our water baby) has been swimming pretty much every day this summer! She is swimming totally on her own now...and doing really well!
Jax is still really nervous with the water but he is in the pool pretty much every day! He is able to swim a few feet on his own now...but he prefers to wear his floaty-suit. :)

A few weeks ago we were able to meet with River in IA! The kids had a great time...we met at a park and had a picnic, then we went to a beach to play in the water and sand. We will get to see River again in a few weeks for his 2nd birthday!

The pain clinic has been a great thing for Jax. He has learned to be responsible about his own body and to lay down as soon as a headache starts...preventing it from getting to the point where he is screaming and getting sick.
We have such a hard time believing that at this time last summer Jaxon couldn't even get out of bed...he couldn't even sit up. Now we can't get him to stop running wild! :) He is acting like a 6-year-old boy...and it is great!

The kids had their 8 year/6 year physicals...they are doing so well! Jax actually is putting a little weight on (which is great). He failed his hearing test, so he is going to see an ENT soon. Robin had a hard time with the eye exam, luckily she has an appt with the neuro-opthomologist coming up soon!

Some sad news...our cat SLY died this past weekend. She was 13 and sick, so it was expected but it was still very sad. The kids are doing pretty well with it.

Well, I think that about catches everyone up! :)

Tomorrow Jax goes in for a re-eval at Fraser. Since he was so young when he was first diagnosed we need to recheck everything.
At this point they could remove the Asperger's (ASD) diagnosis, they could leave it, or they could add to it (such as anxiety disorder). We are pretty sure that it will stay the same...his psychologist thinks that he isn't 'outgrowing' the diagnosis but that he hasn't moved any higher on the spectrum either (being diagnosed with autism).

Thanks so much for checking on the kids...we really do appreciate it! If you have a minute please sign the guestbook!

Wednesday, July 18, 2007

It is the flu. :)
Jax is back at school and doing fine!
Sorry for the delay in updates...we all ended up getting the flu too!
I will update more later!

Sunday, July 15, 2007

Jax fell last week and landed on his head. After a summer of relaxing and being 'normal' we were brought back to reality very quickly. A quick trip to the ER to check for any breaks (head, neck or shunt) and we were home again. Thank God...he seemed to have just pulled some muscles.

We were sure we were in the clear until Jax started vomiting today. Now we are worried that he did in fact break the shunt and that we will have to replace it...we are *praying* that he just has the stomach flu.

The fall brought out a lot of emotions that we didn't expect...Robin's reaction showed us that these past 4 years have not left her unscarred. She is amazing and strong...she has a heart unlike any other...but she is still a scared little girl. She does not need all this...neither does Jaxon. It just isn't fair.

All in all though, we have been having an amazing summer. The kids swim pretty much every day! :) It has been HOT here (lots of 90's, even some 100's).
Jax just started summer school last week...he knows some kids in his class and that helps a lot.
Robin has become a HUGE Grease fan (Mommy's VERY happy about that! :) She walks around singing all the Grease songs all the time!

We will update more about how Jax is doing tomorrow...please pray for the stomach flu!

4th of July, 2007

If tomorrow all the things were gone I’d worked for all my life,
And I had to start again with just my children and my wife.
I’d thank my lucky stars to be living here today,
‘Cause the flag still stands for freedom and they can’t take that away.

And I’m proud to be an American where at least I know I’m free.
And I won’t forget the men who died, who gave that right to me.
And I’d gladly stand up next to you and defend her still today.
‘Cause there ain’t no doubt I love this land God bless the U.S.A.

From the lakes of Minnesota, to the hills of Tennessee,
across the plains of Texas, from sea to shining sea,

From Detroit down to Houston and New York to LA,
Well, there’s pride in every American heart,
and it’s time to stand and say:

I’m proud to be an American where at least I know I’m free.
And I won’t forget the men who died, who gave that right to me.
And I’d gladly stand up next to you and defend her still today.
‘Cause there ain’t no doubt I love this land God bless the U.S.A.

Lee Greenwood

Tuesday, June 26, 2007

Sorry for the delay in updates...we have been BUSY!

Most of our doctors have given the kids a 'summer break' and we have been swimming, biking, playing basketball, playing football, working on our garden...it has been incredible!

Jax's heart stuff all came back ok, we will have to watch him as he gets older but for now we don't need to worry!
Jax starts summer school in a couple weeks, so he has been making the most of his break!

Both kids are TAN! In the summer they get Daddy's dark skin! (Mommy is jealous! :)

That's pretty much it! No news is good news!

I will try to update with more photos soon...here is one from this past weekend!

Have a great week!

Thursday, June 7, 2007

This weekend we will be working at a fundraiser for a very strong little girl, Abby. If you are in the area and free on saturday, we would love to see you there!

END OF THE SCHOOL YEAR, 2007

Robin's kindergarten 'track and field'....with Jaxon. (2005)

Jaxon's kindergarten 'track and field'...with Robin. (tuesday)

We OFFICIALLY have a 3rd grader and a 1st grader!

Jax spent his last day at school with a heart montior, we are pretty sure that his heart isn't working quite like it should, so now we are trying to figure out what we can do about it. We won't have results for a couple weeks.

HAPPY 6TH BIRTHDAY JAXON! Friday, June 1, 2007

We love you little man!

Monday, May 21, 2007 3:13 PM CDT

Jaxon's neurosurgery appt:
The MRI was ok after all (well, as good as can be expected). Now that they syrinxs are gone we can tell that the permanent spinal cord damage is pretty severe. We are still with the new shunt valve (in the brain) from august and it is still working, so that is good!
He said that Jax needs to be seen by cardio, that the heart rate is a concern and that it is related to the brain/spinal cord damage. He says the 'blacking out' probably always happened but who notices if a 3 year old falls alot. So we see cardio in about 2 weeks, they will check on his heart and make sure nothing dangerous is happening.
The other symptoms (tingling and stuff) he also suspects have always been there, Jax is just now old enough to notice and verbalize them.
There won't be any improvement, we are over a year past syrinx surgeries, if he hasn't healed yet, he won't. We will always have to watch him closely as he could easily break or burn his hands or feet without knowing. Thru the pain clinic we are starting some major OT again, hoping to help him understand what he is feeling more (physically feeling, like hot/cold/pain)
The headaches are really the same as they have always been...there just isn't any surgery to help that. We will continue with the pain clinic and hope that we find a good way to manage the pain.
So...that was what we heard. We won't really have any need to go back anytime soon, we will just follow with neurology and see neurosurgery in a year! (Fingers crossed, Knock on wood! :)

Friday Jax had a talent show at school...he had been terrified for weeks...hadn't been able to sleep. We talked multiple times with his teacher and finally worked it out that he would sit in the back (so that people wouldn't see him) and he didn't have to sing...

Guess what he did....

PLAYED THE GUITAR in front of everyone with his teacher....he was front and center...so serious...playing his guitar. He is full of surprises!

Jax's favorite things to do right now are swing, ride his bike, play basketball...all things that he SHOULD NOT be able to do...he is a miracle kid!

We are so blessed!

SUNSHINE 'DREAM' TRIP

(photos larger in 'view photos')

MEDICAL UPDATE:

The MRI shows some swelling of the brain, could be the start of a shunt failure. Neuro appointment on thursday.
Jax has been having more headaches again, lots of 'tingling' in his hands, feet and neck.
Jax has been managing his pain SO much better with the help of the pain clinic, he now knows to tell us as soon as a headaches starts so that he can take some meds and lay down for awhile...instead of waiting to tell us until it is unbearable...this has helped a lot!
Jax has been having some heart rate issues, we are getting him set for a stress test/ekg.

Robin has been having a tough time with asthma this year, she just can't seem to get over this cough/cold thing! We have some new meds and we hope that will help soon!

SCHOOL UPDATE:

Our school has been AMAZING!
Jax will go into first grade next year but with any help that he needs! If he needs to go half days, have several breaks thru the day...they will do anything!
Jax is very delayed in school, he has qualified as having a learning disability so he is being pulled out of 'regular' classes more often so that he can get more one on one help. Due to the damage to Jax's brain we are not sure that he will ever catch up to other kids...but we are sure going to try!

Robin has been doing SO well at school! Last year she was behind in reading (even requiring extra help) and this year she is reading ABOVE grade level!
She officially 'graduated' from her IEP (independant education plan) a few weeks ago! We are SO proud of her!

Thanks so much for keeping the kids in your thoughts and prayers! (Even when we haven't updated in awhile :)
We have just been very busy with 'end of the year' school stuff, lots of doctor appts for Jax (the pain clinic has him in several therapies now), lots of worrying over Jax's MRI and heart...

We will update when we have the neuro appt this week!

HAPPY MOTHER'S DAY!!!

Tuesday, April 24, 2007 11:48 AM CDT

Jax has an MRI tomorrow, we are hoping (*Praying*) that everything looks good. We won't know the results until mid-May.

Please keep Jax in your thoughts and prayers...

~H & J

STAND - Rascal Flatts

You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless
Like you've lost your fight
But you'll be alright

Cause when push comes to shove
You taste what you're made of
You might bend, till you break
Cause its all you can take
On your knees you look up
Decide you've had enough
You get mad you get strong
Wipe your hands shake it off
Then you Stand, Then you stand

Life's like a novel
With the end ripped out
The edge of a canyon
With only one way down
Take what you're given before its gone
Start holding on, keep holding on

Everytime you get up
And get back in the race
One more small piece of you
Starts to fall into place

Wednesday, April 18, 2007 2:52 PM CDT

Things are crazy around here! :) Soon we will have the rest of our vacation pics up and updates on the kids...but for today....

HAPPY BIRTHDAY MRS PAM!

Thanks so much for everything you and the Preschool Penpals do!

Monday, April 9, 2007 3:10 PM CDT

Please watch this...Autism Speaks.

Monday, April 2, 2007

HAPPY 8th BIRTHDAY ROBIN!!!

Day 2 of Sunshine Foundation trip!

(photos larger in 'view photos' section)

Sunday, March 25th

The trip was amazing…awesome…it was seriously a ‘dream trip’.

It started Thursday morning with the kids’ first cab ride…they really thought that was cool! (Easily entertained?!)
At the airport they got to learn a ton about the new security precautions because we were trying to get on a plane with lots of meds, lots of equipment, a child that can’t go thru metal detectors and a mom with an expired drivers license (1 day expired). CLEARLY we were a threat to national security! We did make it thru and mom is no longer worried about terrorists making it on the planes…security is doing their job!

Once we made it to the gate we watched planes come and go…the kids loved it (Jared…not so much, he was terrified to fly). Then we got escorted on the plane by the pilot before all the other passengers…the kids got to sit in the cockpit, talk over the radio and learn how to fly! They got ‘wing pins’ a certificate for their first flight and bags filled with extra snacks for the flight! Then we sat in our seats and enjoyed the flight, it went smoothly…Robin read, Jax slept, and Jared probably prayed a lot. :)

Once we landed we headed to the Sunshine Foundation village! We were warmly greeted when we got there…the kids each got to pick a new toy out and we got our keys. The kids LOVED the ‘Elves Cottage’ that we were in! They also loved all the swimming and miniature golf that they got to do at the village over the next few days!

Once we were settled we took off for the beach…we wanted to see Kennedy Space Center so we went to Cocoa Beach. The kids have never seen the ocean and were in awe. Jax was pretty nervous about the waves but Robin is our ‘water baby’ and she loved it!

When we left we headed for Kennedy only to find that it was closed. We weren’t too upset, we were tired, hungry and the kids really wanted to get back to the pool at the village!

So day one ended with the kids swimming at 11 at night and Dad and Mom finally relaxing…for the first time in about 4 years… :)

More soon!

(pictures are larger in the 'view photos' section)

You know you need a vacation when...

it is barely 55 degrees outside and your child is angry at you because you won't let him take his shirt off!

(Yes, that is snow on the ground.)
(And yes, he is barefoot. :)

Saturday, 3-10-07

Things continue to be crazy here! We are still working on the remodeling that we are doing, dealing with a hardcore med/neb schedule for the kids (they both have nasty colds) and getting ready to leave for Florida!

The kids are SO excited, there just isn't any way to describe how excited they are! :)

We are still dealing with school anxiety with Jaxon. He is very behind in school and is not enjoying it at all. It is so hard for us to understand why it takes 10 adults to get one 5 year old boy to school (and we still only get him there a couple days a week). The new plan is to bring him in (kicking and screaming) and see if he will calm down for them.
We are having a meeting soon and the school will start to do some sensory work with Jax, let him have quiet breaks every hour and will get him the extra academic help he needs.

For exciting Jax news now...he lost tooth #2! The tooth fairy has been very busy here!

Robin is still sick with this cold, besides the allergy meds, asthma meds, extra nebs, cold meds...she is now on steroids too. Her lungs are just not fighting this off very well. We are hopeful that with everything she is taking that she will be ready for the trip this week!

The neurosurgery appointment that Jax was supposed to have a couple weeks back got rescheduled because of snow. So we will have to wait a little longer to hear what they have to say!

We will leave later this week for our trip and it is going to be amazing! The Sunshine Foundation is amazing!
We will be updating with LOTS of new pics next week! :)

Thanks so much for checking in on the kids!

~Heather and Jared

**Please continue to keep the Johnsons in your thoughts and prayers. They are such an amazing and strong family...the service for their grandmother/mother was beautiful. A beautiful day for a beautiful woman.**

Tuesday, March 6, 2007 7:59 AM CST

Prayers for the Johnsons...Abby & Grace's Grandma became an angel over the weekend.

Monday, February 26, 2007 12:59 AM CST

Things are crazy here...

After two weeks of being sick we are finally starting to feel better here! Tired but better!

The kids are doing pretty well...
Jax is having headaches and vomiting, we still aren't sure what is going on with that. He has a CT next week and an appointment with neurosurgery.
Jax has also been having serious anxiety issues with school...getting him there involves hours of his worrying and crying, we are hoping that we can find a way to make it easier...by the time he is at school we are all so tired!

Robin is doing amazing! She is such a huge help with Jax, she is a wonderful big sister! She has been having lots of fun field trip with school and learning SO much! At the end of every week she writes us a letter telling us all the things she did at school during the week...it is awesome! We are constantly amazed by how much she is learning!

We are SO excited for our trip to Disney...we leave in about 2 weeks! We have been planning all the fun things we will do...dinner at Cinderella's castle for Robin, lunch with the Sea World trainers for Jaxon...we will also get to Animal Kingdom and to the beach!

Here are a couple new pictures of the kids...

(Jax helping Grampa TJ put the new floors in :)

We will update more after the appointments/CT. Thanks for stopping by to check on the kids!
~Heather and Jared

Tuesday, February 20, 2007 5:55 PM CST

The kids have both been sick and the computer hasn't been working...

The kids are getting better and we have the computer back!

I will update soon! :)

~Heather

HAPPY VALENTINE'S DAY!!!

Check out what our favorite dr is doing!

Stop by Grace's site and wish her a Happy Birthday!!!

Monday, February 5, 2007 10:39 PM

It is finally winter in MN...we woke up to -20 this morning! BRRRR!!!!

Jax was home sick again today...still with the headaches and tummy pain. It doesn't seem to be shunt related, maybe migraine?

Conferences went so well last week!
Robin is doing amazing, she is way ahead of her class in reading! :) She loves to read!
At Jax's conference they had his teacher, the principal, his teacher from the district...we talked for a long time (and will talk more at the meeting with all of them plus our doctors).
They feel that although he is behind, he can catch up. We haven't decided anything yet but he may get some extra help (outside of school time) and he will not have to go full days next year (we were worried about that, he can hardly handle the 2.5 hours).
The principal assured us that they WILL do whatever they need to to make this work for Jax. We are feeling so relieved! And so happy that we have such a great school!

Robin's appointments went well last week...
She was very nervous about the cyst on her hand but they said that they will just leave it for now. It is not interfering with anything and the only way they would remove it is surgery and she doesn't want that! (We don't want that either!)
Her dentist appointment also went well, the teeth that she has been losing she should lose at 10! She is 3 years ahead! And they discovered that she has ANOTHER loose tooth! (I really think that she and Kara are in some competition! :)

Please continue to keep the Johnson's in your thoughts and prayers...

It is getting late but I will update more soon!
~Heather

Wednesday, January 31, 2007 4:53 PM CST

Please continue to keep Meg in your prayers...

Things are going pretty well here...

Jax has been having more headaches again...some with vomiting. It doesn't seem to be viral...we are hoping/praying that it isn't shunt related!

Robin has an appointment with the ortho surgeon tomorrow, that cyst on her hand just keeps getting bigger, so we will see what they want to do about it.

The kids are off school until next monday for conferences, we are excited to hear how they are doing!

We will hopefully have the meeting about Jax and school soon, in the meantime we have been looking at a lot of other options around here. We have one magnet school that we really love...it is a lottery to get into...we are really hoping that we can get him into that one!

Robin has a dentist appointment this week also, they will be amazed by her lack of teeth! :)

Thanks so much for checking on the kids...please keep The Johnson's in your thoughts and prayers...

~Heather and Jared

Sunday, January 28, 2007 8:28 AM CST

Please pray for Meg

Robin lost tooth #10! :)

Thursday, January 25, 2007

The kids are SO excited about the upcoming trip! We don't know the exact date yet...but it will be in March!

Jax is home with a headache again today...we are having lots of issues with getting him to school. We will be having a meeting (hopefully) soon to discuss what we should do about Jaxon and school. He was/is really not ready for kindergarten this year.

So Jared and I are doing a lot of reading up on different schools in the area, hoping that there is a better fit for him. (Not that our school isn't great, it is! He just might do better in a more structured enviroment.)

We are also in the beginning talks about some possible surgeries for Jax...both to deal with his bowel/bladder issues. One would be a button/hole in his tummy to empty his bladder with a cath, the other a button/hole in his tummy to be able to flush his bowels. We are just beginning to look into these options...they would help him to get out of diapers though (and he hates diapers)!

It has been such an overwhelming week...we got GREAT news with the trip and then lots of not so great things to think about too...

Thanks so much for all the thoughts and prayers...we really do appreciate them!
~Heather and Jared

Monday, January 22, 2007

Dear Sunshine Family,

Get ready for the vacation of a lifetime!

That's right...Jax finally will get to see the 'Really Free Willy' (aka Shamu)...Robin will finally see where Cinderella lives...Jared and I really do get the vacation of a lifetime!

How amazing...we are so blessed...

Please check out the Sunshine Foundation, it is an amazing program!

Wednesday, January 17, 2007 7:43 PM CST

Jax hasn't been feeling so great...headaches and tummy aches...
Here is a pic of him relaxing with Chewy today. :)

Robin has ANOTHER loose tooth! Anyday now the tooth fairy will be coming by again!

Please continue to keep Logan's family in your prayers...

Thank you!
~Heather and Jared

Saturday, January 13, 2007 & Update Monday

*Update on Monday:
Please keep Logan's family in your prayers...he became an angel this morning...

Saturday:
Sorry for the delay in updates!

The pain clinic appointment went great! We won't get the formal plan for a few more weeks but we think that it will help.
The plan will include getting rid of certain meds and adding things like self hypnosis (relaxation), aromatherapy, accupressure, massage therapy...
Jax will also continue with his therapy at Fraser and they will work on his anxiety issues.
These things won't work right away but hopefully in a few months life will be very different!

Things are going pretty well here...
Both kids got a dollar from the tooth fairy. :)
Jaxon went on an imaginary field trip to Kenya at school and Robin goes on a real field trip this week!

If you have a minute, please sign the guestbook...we have had this caringbridge site for 3 YEARS now and it is fun for us to hear who is still with us and how many new people are keeping Robin and Jax in their thoughts and prayers!

Thank you so much!
~Heather and Jared

Monday, January 8, 2007

Tommorow we have our first visit with the pain clinic for Jaxon.
We have been waiting for him to be surgically cleared to go...and thanks to the pressure study it is finally time!
We are going in the afternoon and it is about a 4 hour appointment! We are very hopeful that they will come up with a plan to get Jaxon feeling a LOT better!
We will update soon!

Monday, January 1, 2007 & Update Tuesday

Tuesday update...

Prayers for Lance's family...Lance's funeral is today.

Monday, HAPPY NEW YEAR!

Wow...another year...

We started 2006 like this...

And 2006 seemed to take that as a challenge...it knocked us around pretty good...but we made it through (scarred, bruised, tired...but we are still here).

We have to thank ALL of our friends and family for standing by us thru another long year...you all continue to amaze us with your love and support...
We are NEVER bored in the hospital thanks to all our faithful visitors!
We NEVER feel alone thanks to all the phone calls, guest book entries, cards and packages!
We NEVER feel like we are losing this battle thanks to all the PRAYERS!

We are approaching 2007 a little different…
We ARE tough…
We ARE ready...

But we just want to let 2007 know that we come in...

We come in PEACE!

(And yes, it is FINALLY snowing here! :)

So...here's to 2007...may it be RELAXING, UNEVENTFUL and possibly even a little BORING!

HAPPY NEW YEAR!!!

We love you all!

~Jared, Heather, Robin and Jaxon

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