Wednesday, February 24, 2010

Our life for the past 6 years

So I've been working on a little project in my spare time! After talking with someone last week and go over everything we've been through for the past 6 years I realized it's a lot to remember. She kept asking questions and I kept digging in the back of my head about what had happened and what we'd been through. It's really best to see our life through photos. So I made an online time line. You can click each link below to see the different years and affects of ROHHAD Syndrome and Neuroblastoma Cancer and our daughter's life.







I'm still working age 5 to age 6 but last year was an insane year of isolation and tooooooo many doctor visits. We spent about 180 days at Hopkins in some form. So that leaves me with lots of photos to sift through to tell the story.

I hope you enjoy our first five years as we have many more to live. I can't say how hard this has been for me to work on. To look back and remember the pain, anxiety, worry, and how we are still living with this horrible disease and still have no more information about it than we did 2 1/2 years ago at first diagnosis.

Love to all

Friday, February 19, 2010

Prepping for more snow

As if the last snow didn't take us down we're supposed to get more on Monday. I haven't updated Haven's site in a while although there is a lot going on right now. I don't think I've even taken pictures. I've been sick since getting back from Honduras.

This weekend Haven will be working on her pottery. She got some pottery stuff and a wheel for Christmas from Baby Stryder. So we'll see how well we can mess up the house.

Her MRI was canceled due to the blizzard so I'm working to get that rescheduled. Sleep study is still on schedule for March 6th.

The main issue we've been having lately is the sleep walking which has once again appeared suddenly. Still not half as bad as they used to be but terrifying none the less. She is constantly up and down screaming and yelling all night long. It's funny but not really --- Deez was sleeping in bed with Haven one night and around 1am she came running downstairs to find me. She had this terrified look on her face and was just very still and wanted to be close. I have no idea what happened but I immediately went to check on Haven and she was going crazy. I got her calmed down and then got the dog calmed down. Now Deez is afraid to be anywhere near Haven when she is sleeping. She'll happily sleep with her during nap time but not at night.

I have some great news hopefully I can share soon. Just waiting on doctors to give the final word. :) hint hint......

Wednesday, February 17, 2010




Please support RARE DISEASE DAY! This is the highest acknowledgement we get for our children who are born with rare diseases.

ROHHAD only has 50 children world wide with this disease. Yes - that means in the entire big world only 50 kids. This doesn't mean only in the USA! Every country you can think of is included!

To see more beautiful children please visit their site at : RARE DISEASE

Look for this banner on Facebook and become a fan! You can search for World Rare Disease Day.

We'll be telling Haven's story again this year!!! Thank you everyone

Monday, February 15, 2010

Snow never ends

While I was in Honduras I got photos and updates on the weather back home. We were hit with our 2nd blizzard in a week. This is a picture of baby Deez after playing in the snow. I've never know a dog to love snow as much as she does. She had huge ice balls on her body. She of course was warmed up and snuggled in blankets for a long time. Haven does not like the snow and won't go out in it.

This was the back deck yesterday. When I'm home I shovel the entire deck but this was a really heavy wet snow that turned to ice almost immediately. I can barely shovel it now and do a little at a time. This was on top of the almost 3 feet we got 4 days before. So far MD has about 65 inches total for the season.....with rumor of more Tuesday!!!!

Monday, February 8, 2010

Cancelled MRI

Because of ALL of this I cancelled the MRI today...but I did try. I spent 30 minutes in the driveway trying to get the car out before mentally being over it.

So we only need 2 more inches to beat our snowfall record....and we're scheduled for another 6 - 12 inches tomorrow through Thursday!

Luckily for me - if I can get out of the driveway - I will be in Honduras the rest of the week in 90 degree temps!

Good thing my mom is warmed up on shoveling after my dad had her up on the roof yesterday. She can do my sidewalks!

We won't count on the plows this next round since they spent 4 hours getting this one out after he got stuck trying to plow our street!

Wednesday, February 3, 2010

Next MRI scheduled

February 8th
7:00 am

Scanning tumor in abdomen
Pelvis area
Brain - due to high prolactin levels and possibility of a tumor in the Pituitary

We will be in MRI for about 4 hours and then recovery. As long as Haven does not have any respiratory issues and keeps her O2 above 94 she will be released. Normally her MRI is about 2 hours and it takes about 1 hour for her O2 to climb back up so I'm a little concerned with being under anesthesia this long. It may take a few hours for her O2 to get to a stable point.

Our hope is that tumor in the abdomen is still stable and has not grown and that there is no tumor in the Pituitary.

Tuesday, February 2, 2010

Our Villa at Give Kids The World

Our beautiful 2 bedroom / 2 bath home

Dining room and kitchen - fridge was filled with drinks and table covered in gifts
Living room

Haven's room

Haven's bathroom was huge with pink tiling that she loved!

Bubble jet bath tub and extra large shower!
Thank you again Give Kids the World and Make-A-Wish!

Day 1 - Make-A-Wish trip - Give Kids The World Village

Thank you to Give Kids The World Village for our wonderful stay and feeding us! We had a great time and never once thought about doctors and hospitals!

Haven and dad in front of the Magic Castle

Haven played at the castle for quite a while. I had to go to orientation and it took over an hour. But she made sure to use her time wisely!

She made her star wish and the fairy put it on the ceiling for eternity!

Then she did puzzles with the volunteers

She went to the spa in the castle and got a gorgeous mermaid tattoo, her nails done and her make-up done

Mrs. Clayton during dinner the first night!

Hanging with Mayor Clayton during breakfast!

This was actually the last day but I wanted to show that she finally got her ice cream in a cone!

Day 2 - Make-A-Wish trip - Magic Kingdom / Epcot

Our first day of parks began with Magic Kingdom - Haven's choice for her birthday

First character we meet is Lilo!

Then the Toy Story gang saw us walking and grabbed Haven to hang out with her for a while.

The Jungle Cruise - Haven was initially afraid of this and they even asked her if she would drive the boat. Needless to say - she refused and stayed planted in her seat!

The Flying Carpets - she saw this ride online when she was researching Disney and had to ride it immediately!

Ariel - we were super excited to meet her and they let Haven go right up in the front of the line! It was great.

Waiting to ride Peter Pan

The Castle - we had a great day and because Make-A-Wish kids get an automatic front of the line pass we never waited in line and rode so many things early that we moved on to Epcot around dinner time

Rose & Crown Pub - one of Haven's favorite restaurants. She loves it so much we ate here twice.

They brought her a sundae that she could make herself for her birthday! She had a lot of fun with this.

Sleeping - I can't tell you how many looks I got for this. She slept for about 45 minutes like this. Her only rule is that all of her badges on her necklace had to show.

We walked around the World Showcase while Haven slept. This is Japan

Moracco - one of our favorite. We stopped to see the belly dancer and listen to the band. We have some of their CDs

This is China

Fireworks show. We saw these every night we were at Epcot

Day 3 - Make-A-Wish trip - Animal Kingdom / Epcot

The Tree of Life - this is the main exhibit in the center of Animal Kingdom. To walk through this tree is amazing. All the carvings are so cool.

One of my favorite animals - Elephant!

Love it!!!! On our way in to the show Tough to be a Bug!

My girl getting ready to turn in to a bug. This is not her favorite show - the bugs actually sting, spit, and crawl on you. It's crazy what they can do now.

On our safari ride - one of our favorite rides. Our driver was awesome....we hit bumps that knocked us out of our seat. Very cool.

Baby elephant getting water. There are no gates or fences separating you from the animals on the safari. It's just the coolest ride ever.

Oh no....a trap!

Another one of our favorite restaurants in Asia at Animal Kingdom. Yak & Yeti. Haven and I shared honey chicken and jasmine rice while dad had the duck. She also got a cool birthday surprise!

One of the best shows we've ever seen was Nemo. They also saw her Make-A-Wish badge and put us in excellent seats!

Another nap before we finish our day at Epcot!

Another photo of the English country side

We went to Japan for dinner. It was so cool to have them cooking the food in front of us. Haven was completely enthralled watching them make her dinner. She and dad shared shrimp and chicken while I had the best filet mignon I've ever had!
She never took her eyes off him

Waiting anxiously for her dinner

The fireworks were bright but we came out of dinner right when they were starting. The back of Epcot is closer to the fireworks so it felt like we were in the middle of them.