Christmas 2009

For the first year ever that I can remember my dad bought a fake tree!!!! We just couldn't believe it. And it was so tall he couldn't get a topper on it! ;)

Here is little Deez in her Christmas sweater that Haven got her. This is her favorite spot - the back of the chair.

Miss Haven ready for dinner. We enjoyed a yummy Korean dinner for Christmas....Bool Go Gi!!

This was awesome! My sister Wendy likes to call and TEXT a lot. So since everyone was eating and Wendy wanted to talk we all passed the phone around. Everyone (I mean EVERYONE) did their 2 minutes of phone time with Wendy.

Another passing of the phone! I don't see anyone running to the phone and my dad looks terrified to get it! ha ha ha...sorry Weeliz...we love you! Merry Christmas!

My dad playing the part of Santa!

Haven starting on her gifts. If you've seen Haven open gifts in a Christmas setting it's so funny. She is very particular about how she opens them. The other kids rip them open and tear it all apart. Haven tries her hardest to keep it nice and neat and open it along the seams. Sometimes gifts can take a few hours to open for her because she is sooooooo slow!

The best part was little Mikey at the end saying this was the best Christmas ever! He had such a glow in his eyes.

Uggg...Daddy showing his boy how to shoot a nerf gun! Everyone was in trouble. He can shoot it but doesn't aim very well!

My sister Dusty and her boy Mikey.

My little Angel! This was her new Christmas outfit!

Santa visits and leaves stuff in the stocking for her and Nikki.

We even left home made Candy out for Santa. See below for her candy making skills!

Nikki opens her own presents. We were teaching her to tear open wrapping paper a few days before so she would be ready and she was.

We hope everyone had a Merry Merry Christmas! Bring on 2010! To see more photos from Christmas check out Haven's FLICKR site!

Christmas Candy

Haven and I decided one day that we would make our own candy. I decided to make Buckeyes and Haven wanted to make white chocolate candies. So we crushed up some candy canes.

Layed them out flat and pour hot white chocolate all over them. She was loving them.

and the final outcome is a white chocolate bar with candy cane crushed in to it. This is what we left for Santa.

WOW --- THANK YOU

We want to thank a lot of people for all the help and support they have given to us and Miss Haven this year. It's been a rough year and my only wish is that 2010 is not have has hard as this year!

THANK YOU MATT'S HELPERS FOUNDATION - They have sent us gas cards and gifts throughout the year. Then for Christmas they sent Haven a very nice gift of $500. This was put in her bank account and is being saved for her trip to Disney for Make-A-Wish!

Thank you too all of my friends who have helped take care of Haven this year and those who gave her little gifts to keep busy:

Emily Keener
OUTDOOR DEPT at UA! Seriously - you guys are amazing!
Ely Family - Love to all of you and congrats on your soon to be baby Ely!
Bowman Family - thank you very much
On Field Team at UA - thank you for all the support you gave to me to help take care of my baby
Tom Ament AND Crew in AZ - thank you for holding the fundraiser for our little girl...you guys ROCK!
Byrom Family - there is too much to list but you know we love you guys!
Vicki and Glen - thank you so much. You are always in my mind!

Thank you to all of our family and friends. We appreciate everything you can do for her and for most of all, loving her.

Thank you so much for always reading and learning about our baby and the words of encouragement.

ROHHAD MOM's: you know you are all amazing an dthank you for always sharing information with me and keeping me updated about your child.

To the ROHHAD Angels - my thoughts are always with you and I know you are watching over our babies. Thank you for being part of our lives.

White Christmas

We're definitely enjoying a white Christmas in Maryland....

This was the backyard. I had to shovel a walkway to Grandma and Grandpa's.

Front yard - couldn't believe our neighbor parked in her yard!

The back yard

Complete ice rink - thank you Mr. Snowplow for not putting any salt down and still 4 days later it looks the same!

I haven't seen this much snow since 1996 - when there were 3 blizzards in a row. That was the year I moved to CA!

Due to the snow Grandma and Grandpa Virginia were not able to visit. Haven was a little upset but I told her that Grandma and Grandpa would come the weekend before her birthday to see her.

Baby Stryder and Aunt Katie are coming to stay the night tonight and will have Christmas with us tomorrow. We're having a Korean Christmas - yummy food! This was an overwhelming vote and I can't wait to have some Bool Go Gi!

Blizzard Warning until Sunday

Well it was right on time lastnight - 11pm the snow started to fall. We had received warnings all week that we'd be getting 6 inches - then it changed to 12 inches - by last night they were saying 24 inches.

This was this morning at 7am. I had to shovel to get the puppy outside to potty. The two blind spots just happen to be flakes in front of the camera. pretty cool! Or maybe it's a snow ghost - who knows. By this time we'd probably only received 4 - 5 inches.

By 10am when my dad was out doing the driveways we had received at least 11 inches. I had already shoveled the sidewalk but it didn't matter. Wait 5 minutes and it's covered again. My dad was overly excited to use his Under Armour gloves....I got them for him not expecting it to be cold enough in normal events - he sometimes works in a cold room that is -30 degrees so I figured they could be used for that. But he was loving them today!

Haven out on the deck with Deez. This is probably the 10th time I've shoveled the deck so the dog can get outside and not get lost in the snow!

This was at 2pm today. I am tired of shoveling. I shoveled the stairs and made a path to my dad's around noon. I measured it at 13 inches - then by 2pm it started snowing 10 x harder. It's a really heavy snow too. Of course my dad threw a snowball at me while I was on the stairs knowing with my broken foot I could do nothing but take it.

I'm guessing I'll be seeing my dad around 4pm for our next shoveling adventure! :)

Random Photos

Haven's inability to control laptop overdose!

Santa baby Nikkideez - she loves the back of the chair and couch

Nikki getting her first bath.....let's just say Haven and I got just as wet as Nikki and we washed down the entire bathroom in the process!

Nikki sleeping on the back of the chair.....her favorite place to be. Not sure what will happen at 15 pounds!

Check it out! Baby Stryder sent us a very cool Christmas video!!! I'm so excited to see him and Katie soon! I know he's going to go crazy for Nikki.

Thanks Katie - this was a good video to wake up to on my phone! Love ya - thanks for taking such good care of our little boy!!!

HUGS AND KISSES Baby Styder!!!

Bluetooth Haven

So when Grandpa Beard-Off (dad's dad) sent him a bluetooth headset for his phone for his birthday I never thought Haven would steal it!

She probably called Gpa B-off and Gma Sing 5 times that night I think. Asking them about the weiner dog (Brown dog or Kerri - she had many names). This phone call was to her friend and long time pen pal - Shirley Anderson. She is one of Gma/Gpa's friends that has stayed in constant contact with Haven the entire 2 years she has been at Hopkins. Shirley sends her at least one craft project to do each month and this last time sent her a cute letter to Nikki from her cat - and it was written from the cat's point of view! :)

I think she really just wanted to use the bluetooth. She told me she was cooler than me because she knows how to use it and I don't!

So - Haven says thanks for her present! She gave dad a barbie doll ---- which she later took back and added to her collection!

Cancer Warriors - Thank you Rachel

I want to send a huge thank you to Rachel Graham for including our princess in the latest Cancer Warriors video below. She is an amazing woman helping families share their story. I met her on facebook and it is great to see these kids and see their story through photos.

Our dear friend Jessica Magnus is also featured in the video! We love you Stana and Jessie! Please check out the video and if you are on Facebook please become a friend of Rachel Graham and learn about our children. If you do look her up the profile picture is the ribbon above!

Thank you again Rachel.

Christmas preparations!!!

Well...it took us about 2 weeks to get the tree up. It's not the easiest thing to do when you have only one leg! Guess what - 4 more days and the pin comes out! But on to other news - we got the tree up and then we got the banister covered in snow garland.

Every year Haven loves to put up the Christmas cards she gets from everyone. She had a lot of fun putting these up.

We got a box of presents from Grandma Sing and Grandpa Beard-Off. Which made our tree look more at home! One of Haven's new friend's, Marilyn, sent her a Christmas present so that went under the tree too. Baby Stryder is coming over for Christmas - I'm sure he's going to love the puppy.

Grandma and Grandpa Virginia are coming to spend the weekend with her on the 19th. I'm sure they'll be baking and everything. She is very excited that they are coming! I'm hopefully to get away for a few hours to do some Christmas shopping! HINT HINT!!!

Preparing for Winter

Haven and Nikki playing in the snow last Saturday! Nikki loved it. She kept wanting to go out there and she would run and run. Bite at the snow. Then when it turned to ice she loved it even more! She would bite the ice and it would slide away...then she'd chase after it! She just loves it.

What she doesn't love....is rain! She really doesn't like the rain and makes me stand out there with her. So Haven got her a little jacket to wear. It's a bit small but she was a little ok with it. She didn't freak out as much as I thought she would. Isn't she cute!?

What is Prolactin? What does Hyperprolactinaemia do?

What is this ridiculous hormone and what does Hyperprolactinaemia do to my child?

I know what the medical definition is and I know how it works and what it affects in an adult. But what does it mean in a ROHHAD child. It drives me insane because I can't figure this one out and what it means later. No one has ever really monitored Prolactin in ROHHAD children so we have nothing to go on. Yes I know - ROHHAD children are checked but no one monitors it like they do sodium and everything.

Last year I highly requested our doctors to do a constant monitoring of this hormone - they agreed and we check it monthly. Below is a graph I made for our doctors of Haven's prolactin levels.

The first day is her level after being told her diagnosis of Cancer and ROHHAD. The 2nd date is her prolactin 2 months later after removing her tumor. Then in April we began chemotherapy of Rituxan, IVIG, and Cytoxan. In June we were at our lowest. But by August we were completely off Rituxan and Cytoxan and she started to climb again.

May 1, 2009 we checked her levels before going in to isolation with Hi Cy. She was at 74.4. Normal prolactin for a 5 year old child is 18. So my daughter is extremely high.

This past Saturday I got the letter from our Endocrine office of tests recently run on Haven.

• Growth hormone - in May 2009 was at 53 and in November 2009 is at 64! Still extremely low but going up since Hi CY
• Sodium levels remain normal and good
• Prolactin at 82.6

She is still climbing in Prolactin. So WHAT DOES THAT MEAN? Our doctors don't have an answer and can't tell me what and how it affects her. I don't believe I know any other ROHHAD child with a prolactin level this high.

The only thing I can imagine or what keeps running through my head is what we are afraid of. We waited too long to start treatments for ROHHAD that certain areas are permanantly damaged and can not be reversed. May be if we started earlier we could've repaired this - her graphs seems that way.

So now that she keeps climbing and climbing what will happen next? What does it do?

All I can find is that she most likely will be infertile and it can cause osteoporosis.....so what do I look for next??????? I hate this disease!

First Vet Visit

This is the two of them after Nikki's first vet visit with us. Nikki did very well. She was a bit nervous and Haven was upset that she had to go. She didn't want Nikki to be sad. Haven came with me so she could see what it looked like and what they did to her puppy. The vet was very happy with all the info we got with her. Everything is up to date and she said Nikki is in perfect health - which we knew.



She started her heart worm and flea medication today. So she will do this once a month. Her next vet visit in Dec. 19th for her next round of shots. Haven will go to make sure Nikki doesn't cry or feel lonely.



She loves laying on Haven. For Haven, a pretty smart 5 year old, she thought it would help when discussing a "baby" as either a "skin baby" or a "fur baby". Since Deez is furry she is a fur baby and when Haven was a baby she was a skin baby. It's amazing the things they can come up with.

Just hanging out

Nikki loves Haven like crazy. These two hang out all day long. She actually gets very sad when she has to go in the crate while Haven does her school work. Lucky for Nikkideez - Haven is homeschooled only 3 days a week for 2 1/2 hours a day! :) So they have lots of time.

Now we're not exactly sure...but we think Nikkideez is part parrot. She loves to climb on to our shoulders and sit. She will sit there forever. She also thinks she's a cat and tries to get on the arms of the couch and sleep. She is just too precious.

Relaxing Sunday

This was the photo of the day last Sunday. Nikki and Haven sleeping on the couch. Nikki loves to take naps and so does Haven!