Saturday, December 14, 2013

IVIG for Dad's Birthday

We were finally able to set up Haven's IVIG at a hospital closer to the house.  We've been driving over an hour every time to get Haven to the hospital.  Now we only have to go 20 minutes.  When we got there this time the trees were decorated for Christmas.  I love being in a place that isn't afraid of Christmas and Christmas trees!

We didn't know Santa would be there or that elves would be present.  But when we got to the hospital there they were.

Haven was so excited to be able to get with Santa one more time.  She kept telling me every time she got with Santa there was something else she would remember that she needed.  

When we got to the hospital Haven's nurse had set up her bed with a little gift bag.   Danielle is super cool and Haven just loves her.

Ohhhh….IVIG….how we do not love thee!

Haven hanging out while we wait for the 6 hour treatment to end and then we get to go home and celebrate dad's birthday.

Happy Birthday Daddy ------ Love your clan

Sunday, December 1, 2013

Endocrine visit!

Well Miss Haven has been on the growth hormone shots for about 2 months now.  We went in to meet with Endocrine the week before Thanksgiving.  This was to make sure Haven was responding the medicines and if she was having any reactions.  

I was most concerned that she had gained 2 pounds but then again I wasn't sure if it was the medicine or not.  So they took all her numbers and vitals and then we reviewed.

Since her last visit to Endo in July Haven has gained 2.2 pounds.  Keep in mind Haven hasn't grown even an 1/8th of inch in two years.  She just stopped completely.  No hormone to do it.  Also affects teeth and muscle mass.  Since starting the medication in October Haven has grown 1 complete inch!!!!!


Not only has she grown an inch in 2 months but her weight percentile has gone from 87% to 85%.  Even though she has gained 2 pounds she has gone down in percent.  Doctor informed me that Haven has no muscle and this will help her with that - which also adds weight but not fat!  :)  I'm so happy.

This definitely makes taking the medicine worth it.  Since Haven is responding so well they increased her dose and now we will see the doctor on May 1st for another review of where she is.  I have already bought her new clothes because her old pants are about 3 inches above her ankles and look a bit funny.  

Next up is Pulmonary and a sleep study on December 21 - we're a bit concerned here but hopefully we'll get some good info at the study.  And she has her IVIG coming up on one of these Saturday's in December.  

Thanksgiving Dinner 2013 --- Mom's first try at turkey!

This was our first Thanksgiving dinner on our own - no parents to cook for us.  Time to figure out our own traditions and what we like

Haven started the morning off with Deviled Eggs

Then came the roasting of the bird!  We filled it with lemons, oranges, onions, garlic, parsley, sage, and thyme leaves.  Then rubbed our garlic butter mix all over him!  

He came out BEAUTIFUL!  We checked his temp and he was ready to eat at exactly 4:45pm!  :)  mmmmmm mmmmmmm

Haven also researched a good cranberry sauce that we all might actually eat.  We bought some fresh cranberries - cooked them until they popped and then added all the goodies.

At the end you add blueberries --- OH IT WAS YUMMY.  I've never eaten cranberry sauce and this was amazing!  Great job Haven.

After dinner we started the decorating of the windows.

Rohnin is always a huge help with the decorating.

Finishing windows to move on to the doors.

How high can we get the stickers so Weston doesn't destroy them?

Everything gets moved up the next morning!

Taken by my Haven.  She put this Nativity scene together with the window stick ons.  

Fun time at the mall

Got the kids to sit with Santa and tell him what they want!  Weston was more worried about what the elves were doing.

They love going and climbing in the play area

Rohnin has no fear!

My boy

This is a great map for weekend energy release.  Lots of parents just come and watch the babies play….makes the rest of the afternoon much easier!

Christmas List making

We took the babies out to see what they like at the stores….plus it wears them out to spend 2 hours in Toys R Us!  We always try to get them stuff that is slightly over their age so they can grow and learn with it.  

 Weston LOVES trucks

yea Spidey was in there

Now I know Rohnin loves these castles and houses to play with

Weston loves them too

My girl really wants her own chair…..hhhhmmmm

This was a fight to get them out of!

Truck heaven for Weston

Oh doll houses!!!!

Immunology update

 Just a vital check…heart rate was a bit high but everything else is good to go!

 Accessing the port - we had to do this twice because her port clotted up half way through.

When I got back from Bangladesh I took Haven in to the hospital the next day to get her labs done.  We had a lot of extra labs taken this time for Immunology.  I have been sick since my arrival back home and haven't really been able to connect with the doctor so I do not have the results of the labs.  But I did receive confirmation that she would be transferred to Immunology - which will allow us to do her IVIG treatments on Saturdays instead of during the week.  WHICH IS AWESOME!   When you seen 5 specialists almost monthly it's very hard to continually take off work - especially when some of the treatments are 6 hours long!

I will hopefully be able to connect with Immunology this week and get everything set up and finalized.

Wednesday, November 13, 2013

Working in Bangladesh

The past week I have been working in Bangladesh….new experiences in my travels.

Modes of transportation to the factory include police escort drives through the city, boats to avoid the protests, riding home in an ambulance each night, and watching how the Bangladesh people get to work.

On the boat to the factory - interesting way to start the day

Heading in to the factory areas

Life in Bangladesh

Our ROHHAD friends

Mason - who also has ROHHAD - has been Haven's friend since 2008.  He was admitted to the hospital about a week ago with Pneumonia.  We want to thank everyone for their prayers and thoughts of Mason.

He was allowed to come home today.  We're so very excited and happy to have him home.  Love you Mason!

Miss Reagann has been in the hospital for a long time.  She was able to go home from her treatment at Hopkins only to land in the hospital with a torn 

We were hoping she would be extubated yesterday but was not able to.  The doctors are hopeful that she will be extubated today.  Currently she is strapped down to the bed so she doesn't pull the tube out. They are going to take the tube half way out and look to see if she is well enough.  She has been taking medicines to repair the tear and we're happy she hasn't had to have surgery.    Please send her some happy thoughts!

And our sweet friends - Sophia and family - got to meet up with LJ before he headed in to surgery to have his trach placed.  He was put in to a medically induced coma.  He is still in the hospital and we wait for him to come home.  Get well and home soon LJ!!!!

And my broken heart for this baby.  I'm so happy we got to know Stevie and hang out with her.  What an amazing little girl.  She made me giggle and she was so soft spoken and beautiful.  We will miss Stevie but we know she is playing with her fellow ROHHAD Angels  Love you Stevie.

I realized the other night that (from those that I know personally) we have had 8 ROHHAD babies gain their wings since Haven was diagnosed and we became active in the world of ROHHAD in late 2007. Very very sad.  We miss all of you.

Monday, November 11, 2013

Our Friend Stevie ---- Received Her ROHHAD Angel Wings

We are deeply saddened by the passing of Stevie.  We got to hang out with Stevie over the summer a few times and visited her at her house.  She is a beautiful baby who has now gained her wings and has become one of the many to leave us so soon.  She is now watching over all ROHHAD babies and teaching her new friends all the magic she can.  I am more sad to be out of the country and to miss her funeral services.  I will be visiting her family as soon as they are able to receive visitors.  

Please say a prayer and hold Stevie and her family in your thoughts.  

We love you Stevie and will miss you dearly.  Thank you for teaching us to smile.

Stevie passed away peacefully surrounded by her many, many loved ones. She is up teaching love, kindness, acceptance and forgiveness to her new friends in heaven. She triumphed her illness battle with endless courage and a positive attitude. Thank you Stevie Roonie for sharing your gifts with all whom you encountered. Thank you for bringing us so much joy and happiness! Thank you for all your persistent love and affection through all your demands. We would like to thank her phenomenal “team” at Primary’s, all her wonderful nurses and caretakers and her awesome teachers throughout her life. We are so privileged and lucky to be a part of your journey and through every phrase and every picture you will continue to touch our hearts! THANK YOU FOR BEING IN OUR FAMILY! Smell you later!

Stevie is survived by her parents Heath and Jessica, her Best big brother Dylan and a kick ass family!

In lieu of flowers donations can be made to Stevie Hendrickson at Heritage West Credit Union.

Sunday, November 10, 2013

November travels --- 27 hours of flying

I love traveling but I miss my family!  It gets pretty crazy when traveling this much.  Good thing we have FaceTime so I can see those beautiful faces!

This trip started with a jaunt to Denver, then over to Japan for about 6 1/2 hours, then on to Thailand for a day, then a skip up to Dhaka, and final arrival in Chittagong, Bangladesh.  I have never been in Bangladesh so it was all a new experience for me.

Here are some photos from the current trip!  I'm a huge fan of ariel views and land vs. water.  It's amazing to see an ariel view of where you live!

 Heading towards the Rockies

That is a 4WD trail……nice!

Rockies….almost in Denver

Welcome to the plains of Denver - I remember when we moved here thinking Denver was close to the mountains…..yea not true

I chose this route so I could get on the new Dreamliner plane.  I LOVED IT!!!!  Plus I really didn't want to spend a day in Dubai.  Maybe some other time.

Love this plane!

These map things are so fun.  You can see exactly where you are in the world.  Here you can see where the sun is and where it's night time.  I was just flying over Alaska at this point.

Another view - this shows where I started (Denver) and am now at Alaska with a final destination of Tokyo, Japan.  You can't really read it but it says it's -43 degrees outside.  Our speed was 575 mph.  Only 3,400 something miles left to go!!!!

YEAH!!!  Finally arrived after 15 hours of flying so far!  I have to say I couldn't walk.  It took a long time to be able to walk after sitting that long.  I had the largest knot in my back.

Flying over Japan

Shoreline of Japan - you can see a large water park below

Not sure….could be Godzilla's drinking water….I love the teeth though

I love seeing the different landscapes!

Arrival….66 degrees and it's only 4:30 pm!

So I was back on a plane AGAIN!  This is my arrival in to Thailand.  I wasn't sure about the hotel.  My friend from work recommended it - I was nervous because it was $30 a night with free hotel shuttle.  BUT ---- I wasn't sold in to slavery and the hotel was very nice.  They upgraded me to a suite for free.  The guys were very very nice.

Had a living room in there that could fit about 20 people - I wasn't planning a party.  :)

Bathroom from the bedroom.  I love that all these hotels love to have the bath with a glass wall.  You could pull the curtain on this one but it's pretty cool.  I was going to take a bubble bath but it didn't work out so well.  I like to have scalding hot water - Thailand likes luke warm water.  So a quick shower it was.

Morning sun coming up in Thailand.  

View out Vismaya Hotel window.  Happy to be staying there again next week.

Not my preferred way of travel in another country.  BUT --- this was the road to the hotel.  

Thailand is voted my favorite for the art and care to details in the decor.  This is in the airport.

Other side of the tug-o-war

 Center piece

I love Thailand because everything here is ELEPHANTS!  I just need money to buy them.  I'd have my house decorated in Thailand elephants!

Heading to Dhaka, Bangladesh….met up with my co-worker in Thailand.  Was good to see a familiar face.  I love taking pics of the Coke cans.

Bangladesh landscape

Have to say I was a bit shocked at how much of this country is under water

Almost all water here

This village has practically sunk in to the ocean.  It's all salt water so nothing can grow any more

Again more villages under water

My co-worker read that Bangladesh could continue to sink itself out of existence

Once we arrived in Dhaka we were quickly picked up by our escorts.  They took our bags and helped us get through customs.  We were able to go through the Diplomat line - it's all in who you know! :)

This is the private jet we took to Chittagong from Dhaka.  Everyone is so amazingly nice.  New perspective in some ways.  The pilot was super cool and that is my co-worker meeting him.

Miss Rachel on the jet.  It's been great to travel with her.  

Driving from the airport to the boat…yep a boat to get to the Korean dorms.  There are massive strikes going on in Bangladesh and especially Chittagong for our entire visit.  So we have to take the boat to not get stuck in the protests.

Hoping these are NOT the boats we are taking!

Still hoping…..

Village under water


Shopping area and restaurants

Little chit chat

Fruit market and the cage for the chickens

Grocery store

Sure this is not our boat either…..

Here is our boat….not my preferred method of travel once again.  Just hoping we don't sink.  Rachel and Bonnie enjoying getting splashed by the very muddy water

Our little boat passing up the big boats

Shipyard - they are building boats over there

Korean area of Bangladesh --- Cows roam free everywhere here.  You walk outside and you are guaranteed to be greeted by a cow

funky animal down there

The dorms.  We chose to stay at the Korean dorms because it's much safer and nicer than the hotels.  There are armed guards outside and the view is so nice - all forest.  You still get woken up by the call to prayer but I hear it's much less than in the main city.  The foxes are insanely loud and sound like monkeys. I have video to share!

front yard at the dorms

View from my room

Another view from my room down to the yard

I believe this is a house.  I haven't gotten to close to look. We have to have an escort and I just go in and eat and sleep.

Guard tower

random buildings

Not sure…..


Off to work.  It's Sunday here in Bangladesh but everyone works.  This is our mode of transportation at this moment due to all the protests.

Bonnie and Jake - very cool to hang out with them.  Need to visit their Korean offices someday.

Boat ride

It was very foggy on the waters…I was hoping our driver could see.  He was a very small old man.

Time to get off the boat and take a ride to the factory.

These are kiosks so to say.  People getting off the boats can buy stuff here.

A house

We had to have a police escort in to the city due to the protests.

Waiting for everyone in the chain of vans to head out.  Ambulance was at the end and Police at the front.

The streets were INSANELY crowded. 

I've never seen so many people in the streets and they don't care if your car is there or not.

Women off to work at the factories

Just running to get to work.  

We arrive and get to work

Here we are working on patterns and grading

Rachel and Jake

Tour of the factory -- they employ over 40,000 and feed them all!

Production line

Reviewing our production for Spring 14

Sample lines

Another review of our production

Heat press machines

Down here to see the process and how they are doing the heat transfers

Other factory buildings

Random factories

Another factory

Zipper manufacturer

Lunch --- this is another factory - they do the Nike shoes here

Of course the coke can.  No diet in Bangladesh --- but I had such a massive migraine from no caffeine I had to drink it.  

Lunch --- the soups near killed me they were so spicy.  The one on the left is a Bangladesh lentil soup and the other is an extremely spicy vegetable soup that made me cry.  Then we have bulgogi, "green" vegetables, cauliflower, noodles with red hot Korean spice, rice and ochre.  

Art as you enter in to the factory.

Our ride home from the factory to the boat was in an Ambulance.  We had to use the sirens to get through the crowds of people.  

Not an ambulance you would think it to be like…..There was a bed and a sink……..

Next up - pink toilet paper!

The people are so amazingly nice and very talkative.  They are proud of their factory, employees, and quality of goods.  I am amazed and shocked at the same time.  It's a great experience.  Everyone here is so genuine and they never let you carry your bags!  Lots of stairs though….whew….no one takes elevators because the power fails constantly.

Well……I have  1 1/2 hours before I have to be on the boat and back to work at the factory.  Another adventure!