Kicked out of Camp

Skipping over the past 6 months for this post.  More to come...

Yes we did get kicked out of camp, but it was for a good reason.  We had the best short lived time at camp John Marc (aka 170 acres of Heaven on Earth).  Due to unusually cold weather, they shut the camp down for safe travels on slick Texas roads.

About:  Special Camps for Special Kids serves children with chronic illnesses and major physical disabilities, and the families of those children, by making possible high-quality, year-round camping experiences at Camp John Marc.  

The history is quite touching.  The family donated the land as a living legacy and tribute to their son, John Marc, that lost his battle with cancer when he was just 9.    His memory lives on and continues to bless lives of thousands of children.  It is an inspiring place where we get to be a happy normal family at an extraordinary camp!

Click here for the link: History

We were invited for a weekend family getaway to Meridian, TX.  Only 4 families were chosen for the weekend.  They were mostly from the Dallas, Ft. Worth area.  I don't know any others who had been there from Austin.  As it turned out, it was only us 2 other families that got the entire ranch to ourselves.

This was truly my kind of camping.  Two bedrooms, a handicapped accessible bathroom, washer & dryer and full kitchen and living space & even a nurse on staff.

Our first stop was the arts and crafts station.  We didn't want to leave.  An entire building stocked with every craft you could ever imagine.  It was overwhelming.  Like we had been dropped off at a Michael's and said have anything you like.

Garrett looking for anything on the floor that he might be able to put into his mouth.

Hayden and Hanna made keychains and bracelets with their name for their backpacks.  Hanna also made a jewelry box with feathers and lots of modge podge.

Hayden loved air hockey!  Looks like this is something we may need in our future.

Panoramic of the long accessible trails they have all around camp.  No cars allowed.

The gates to the camp are beautiful!

Some of the covered walk way.  We were so happy even though it was cold and rainy.  I think the only thing that would have possibly made it better was if we had good weather too.

Here is the story.

Beautiful details were all around us.

The wonderful donations that made much of it possible.

Can you get over how awesome and huge this place is?  This was just one of the many buildings.

We got it nearly all to ourselves.  

The amazing kitchen were they have cooking school for the summer campers.

Play Room for Dress UP

Hanna met another 6 year old friend.

A fishing pond.  Good when the fishes aren't at the bottom hiding in the warmer water.

Just happy.

Even though we were sad to leave.  It was a huge success for our 1st family trip that Hayden wasn't vomiting in the car or needing to stop and vent the air out of his stomach every 30 minutes.  It was relaxed and wonderful even though it was just 24 hours.

We can't wait to go back!

Lucky 13!

Sometimes I can't believe that I am a mother.  I have 3 children!  This year I became a mother again.  I have taken longer than most preparing to become a mother.  It took us 13 years to welcome little Garrett to our family.  I have never had to work so hard to achieve anything as bringing children into this world.  My greatest accomplishment has been becoming a mother.

Although I love being a mom, I loved taking advantage of a long weekend for myself and going off on a wonderful girls trip to New York City!  I don't need to blog this as my wonderful friend Michelle already did.  Check out her link.  http://richnmichkenyon.blogspot.com/2013/04/new-york-new-york.html  I don't know how I got so lucky to be invited on this trip or how I got to have such a wonderful husband that let me go.  It was a trip of a lifetime!

Recently we have had many medical appointments.  This is something that is part of our "normal" life.

Hopefully hard work and determination is a family trait.  Here Hayden is standing tall!  He has been working for the past 4 years on learning how to take steps.  None yet, but he is standing and that is something!

 Garrett has been a wonderful child.  Full of smiles and easily goes along with the ride.  

Trying to be efficient with my time, I made back to back office appointments with Hanna getting her cast off and Hayden getting his first pair of RGOs (Reciprocating Gait Orthotics) or "Rock Star Super Legs", as Hayden is calling them.

Hanna's favorite colos are pink and purple.  The technitians were skilled enough to do both colors for her.  All of her class friends signed her cast and she was pretty proud of that.  We were also glad that the weather was warm enough here that she didn't have to wear long sleeves because they wouldn't fit over the cast.

 Here is Hayden standing in his new RGOs.  Unfortunately pants don't work well with the comfort of the braces.

On yet another trip to the hospital, Hayden had to go through the ER to get a shunt flow study.  Sweet baby Garrett had to keep him company.  Baby Garrett has seen the inside of too many ER rooms in his short little life.

We had never subjected Hayden to this test before.  He had been having low grade fevers on and off for weeks and had been throwing up and acting not himself which are hallmark signs of malfunction.  The big worry is always his brain.  We had to weigh the risk of doing the procedure verses the risk of ignoring possible malfunction of the shunt. We had waited long enough so we had to go through the ER to have the test. 

He had an MRI prior to the nuclear medicine test.  In the ER, the neurosurgeon put a needle with contrast dye into his brain shunt to see if the cerebral fluid was flowing properly through the tubing into his abdomen.  Simultaneously, they tested to see if there was an infection present in the fluid.  All the tests came back negative for infection and malfunction.  Yet I knew there was something still wrong.  Before we left the ER I asked the Dr. and nurse to catheterize him before they would release us.  Sure enough he had a bladder infection due to his neurogenic bladder.  I was so happy that it wasn't his brain.

The good patient got his favorite treat and even got a special toy from the hospital for being an exceptionally good patient.

While our family hasn't slowed down, neither has Garret.  He continues to grow cute and healthy here at 3 & 4 months old!

While we have had our struggles, our blessings are cherished that much more.  Hayden has had the opportunity to play on the Miracle League t-ball and be a part of the Cardinals team.  It has been awesome to see so many kids just like him having the best time!

 This is his serious thinkin' tongue. We are so thankful for the good people that volunteer and put something like this together.  It really is something special to be a part of.

We also got to enjoy a weekend visit from Kristin & Ben with a late night dinner at one of Austin's famous food trailer parks.  Hanna was starting to loose it from too much ice cream.

Hayden also got to go on a school field trip and ride the BUS with his new power chair!  He was excited about this for days.  Thankfully his nurse was there to help too.

 Nothing better than hanging with your friends.

 Cute Garrett

 In the spring, Texas is full of  fun small town spring carnivals.  Hayden loves fire trucks and the nice firemen that show him the tools.

 Instead of a Kindergarden graduation, Hanna's school puts on a Kindergarden Circus performance.  She was a "piggy dancer".  Click on this link to watch it on youtube Hanna's surprise school dance. The performance was a surprise with her awesome dance that we had never seen.  Following the performance she wore her stage makeup and went to the Daddy/Daughter dance.

Scott and I have been married now for 13 years on Memorial Day!  While we have had more struggles and continue to have challenges that seem beyond our strength to endure, we have witnessed miracles and received blessings beyond our comprehension.  I love our little family and each day hope to be worthy of it.  

The end of May is bitter sweet as it comes to a close.  We have sold our home of 8 years and hope to be moved out in the next few weeks.  The house we built together has many memories, where we started our family and brought all three of our children home from the hospital.  This milestone marks the start of our new journey and we pray that it is in the right direction.

Movin' on up... and out

 Our home listing is official!

The move was a challenge with a one month old baby and moving into an apartment a third of the size of our home.  I know, I know, who would move with a newborn?  The timing seemed to be right (we have had showings nearly every day) and much better than trying to show a home with 3 kids, therapists or a nurse in the home daily.  Click the purple link above and see the pictures if you are interested in purchasing a home in Austin, TX!  

A year ago we made the decision to build a home that was more suitable to ALL our needs.  After researching our options in our budget, we soon realized we would have to significantly downsize if we could afford an accessible home.  That is when I started the process of creating Barrier Free Construction.  We decided to take the leap of faith and work on building our own barrier free home.  After a year of planning, our new home will be located just about a mile away and plans are with the county for permitting!

It has been a difficult month, but it is all worth it for these little ones.

Garrett turned 2 months old!  He is a pure delight and such a good baby.  We cherish him every day.

At 2 months he is already 13 lbs, 55% for weight but 75% for height.  He has outgrown all the newborn clothes and is already in a size 2 diaper.  Most of the hair on the top of his head has fallen out but there seems to be lots more growing in.

Hanna has become a great big sister.  She wants to hold and kiss him constantly.

 She thinks she is grown up now too.  She walked all over with these pink glitter shoes.

She got her first mani...pink of course.  It was supposed to help her stop biting her nails.

 She made and sold her paper flowers at the school shop.  She is an artist and loves to cut and glue.

 For Spring Break, we went to an accessible theme park in San Antonio.  It is wonderful for everyone!

 Except, Hayden got really sick this day on our way.  The very next day we went to the ER to be checked out for possible shunt failure due to the symptoms he had.  All the imaging came back clear and he was discharged with a follow up flow study if symptoms continue.

You can see he just wasn't feeling himself.  The picture below made us happy because my mom works for Boeing and they were a supporter of some great projects there.

 Hayden loved riding the dragon.

 Hanna loves this ride.

 That is mom wearing Garrett under the blanket asleep.

 Fishing lake.

Hanna put the happy face sticker in the middle of his head. 

 Riding the train and playing the conductor.

Hayden loved saying "all aboard".  He is obsessed with Thomas the Train and anything train related.  he wanted to know the name of the conductor and the train the whole way down.

Sunday Scott spent the day at the ER with Hayden.  Monday, I spent the day at the ER with Hanna.  Poor Hanna was playing at school and while running tripped and landed on her arm, breaking both bones.  She had to have anesthesia and have her arm reset twice.  It was terrible.

 When we got home, she was sure glad that at least the splint was pink.

Garrett continues to be cute and healthy.

Here is looking forward to selling our home and settling into our new "normal."