Wednesday, December 31, 2008

ROHHAD / Neuroblastoma Treatment Plan

We have been waiting about 2 weeks to find out what Haven's treatment plan will be for 2009. We were certain it would be an elevated and more frequent dose of Rituximab but this is not the case. I spoke with Haven's doctor on Tuesday and we are starting her first dose of chemo tonight at 8pm. It took 24 hours to get the medicine made and ready for us.

Haven will be on this plan for probably a year but can be longer if necessary. During this time I will keep a journal of everything happening with Haven. This includes her eating pattern, her food requests, her pottying, number of diapers used in a 24 hour period, her temperment, her sleep/non-sleep patterns. Any little changes we notice will be documented.

Just a reminder THIS IS NOT A GUARANTEE that it will even do anything. We have no cure for ROHHAD so we're hoping to see some changes or we know it's just not working.

Rather than go in to all the side effects and details of the medicine I will just let you know it's generally the same as all other chemos: breathing problems, kidney issues, high blood pressure, etc etc. So we will also be keeping close eye on her.

Her schedule will consist of:
  • 2 doses of chemo every day at exactly 12 hours apart - 8:00am and 8:00pm
  • mix with shot glass of whole milk (I wasn't excited about the whole milk part) at room temperature
  • 2 times a week Haven will go to JH for blood work by 8:00am. Her chemo will be brought with her to take immediately after the blood work.

Why are we doing blood work 2 x a week. This medication has the possibility of throwing her "levels" out of whack all over the place. So they need to keep track of it closely.


So going in to 2009 - we are thankful to still be bossed our by our little princess and we are trying to look at the positives as 2008 was filled with so many negatives. This is going to be a VERY hard year. Kris will be taking Haven to 95% of her doctor appointments as I have to work and we'll need to keep on each other to give her the chemo at exactly the same time every day at 12 hour intervals! We're buying an alarm clock tomorrow that will be the "Chemo Clock".


OH - We find out on Friday if she is making Cortisol! I SUPER DUPER hope so!


Merry Christmas and Happy New Year

We hope every had a nice Christmas and is safe for the New Year! We're working on our resolutions for 2009. Here are a few pictures of Haven from Christmas. This one is from Grandma and Grandpa's house on Christmas Eve. I had to run out and get her a Christmas sweater....she couldn't be out of fashion for the occassion. :)

I just love this picture!!!! She looks so sweet and innocent! :)

Dad and Haven opening her gifts! She's not "allowed" to have Bratz dolls but of course grandparents are an exception! She got a Brats doll hair coloring kit! She can color her own hair with it. Should be fun this weekend!!

This is Haven opening the gifts from all her friends around the world. It was awesome! We didn't let her open any of the packages until Christmas Eve.

All the rest are on her FLICKR site. There are a few cute videos of her on the Wii. She got a new game from her grandparents in Utah and just loves it. However, after 4 hours of straight playing she looked at me and said - "Mom, this seems more like exercise than a game!" Hhhhhmmm.....really? I wonder if that's why Mom and Dad bought the Wii!

Love to all

Tuesday, December 30, 2008

ROHHAD and NEUROBLASTOMA Update on Haven

Currently - I just wanted to update everyone on what we're doing and what we're waiting for.

Through the holiday break we have slowly been decreasing Haven's dose of steroids and will end on January 1st. On January 2nd at 8:00 am we will have blood taken at JH to check Haven's Cortisol levels. I am hoping she is producing Coritsol on her own and we won't need the steroids.

January 13th - Haven will go in for Chemo and meet with her doctor to discuss the future treatment plans. We are waiting to hear if we will go back on Rituximub (chemo) for another 6 months.

January 15th - Meet with Pulmonology at 8:30am to evaluate Haven's breathing - really I don't know what they do. This will be the first time we've seen Pulmonology since our initial 10 day hospital stay in October 2007.

Setting up an appointment with Audiology - WHY? Josh lost his hearing after being diagnosed with ROHHAD. So since we know very little about this syndrome we are getting an initial marker on Haven's hearing and will be able to watch if it starts to decline.

Still waiting from Haven's eye doctor - I've called 3 times and haven't heard back. I'll call again after the holidays. Now that she is going to be getting more chemo I'm not sure if it's the right time for surgery. Haven's doctors will have to tell me on Friday.

Christmas photos are coming! I have so many projects in the works right now I barely have time to do anything!

OH - had some CRAZY doctor dreams over the break. I remember one very clearly.
-- Haven was in a lab room (all white of course) with lots of doctors. They frantically tell me that Haven now has Hypoxia. I was upset (although when I woke up I didn't know why) and I kept asking them how do they know. They kept telling me "it's on the list". I was crazily searching for the list and they had it on the white board and were check marking Haven's symptoms - just going down the list. They kept telling me to look at the list over and over. --

I woke up and searched for my list. Hypoxia is NOT on the list. I was't even sure if it was a word or medical term. BUT it is!

HYPOXIA: is a pathological condition in which the body as a whole (generalized hypoxia) or region of the body (tissue hypoxia) is deprived of adequate oxygen supply.

Haven does NOT have Hypoxia! Whew! :)

Angels for Haven

I received an email from someone last week. She had read Haven's story and was touched by how brave and strong our little girl is. She asked if she could post Haven's story on her site and donate a portion of the sales to Haven.






These are beautiful handmade pieces and we're extremely thankful that someone would take proceeds from their labor and donate it to Haven. Please check out her site and thank her for all her help.

CLICK HERE TO SEE HER SITE ---- I also have a banner to the side of the blog that you can click on anytime.

Monday, December 29, 2008

Chemo Duck and the ASCEND Foundation

Haven received the cutest little duck from the ASCEND Foundation. His name is Gabe Chemo Duck.


About Chemo Duck

Chemo Duck is a multi-purpose stuffed animal. He is a 12” stuffed Duck who comes dressed in hospital pajamas and a bandana wrapped around his head. Safely secured on his chest is a bandage with either a central line or a port (the vehicle used to take chemotherapy directly in the blood stream). On his arm he wears an arm immobilizer sometimes called a “No-No”. The arm immobilizer protects peripheral IVs, and discourages children from bending the arm to pull at bandages etc.


I received this note this morning and wanted to share!


NOTE:

Dear friends,

We are so glad that Haven enjoys her Chemo Duck! Gabe and I hope he brings her much joy and comfort!Gabe's Chemo Duck program has now returned to Gabe's My Heart in Nashville TN, while we are still close to the ASCEND foundation and their endevours they are now developing an educational project of their very own. Thank you for your wonderful comments and support of Gabe's Chemo Duck.

Love,

Lu and Gabe Sipos

http://www.chemoduck.org/

Haven's FLICKR site

Well I used to use Shutterfly for all of Haven's photos but it's too hard to share. I have to send you a link to have you view it. I still use Shutterfly but more for personal stuff. So I have created a FLICKR account for Miss Haven. I have a lot of photos to transfer over but there are MANY in there.

If I put the photos up that I take this site would be overloaded. I taked hundreds of photos and videos all the time. There will be a "set" for Haven's videos on FLICKR. I will separate them as "Awake" and "Asleep". Some of the things she does during both times are HILARIOUS. I'm trying to get this little dance she does on video.

Anyway, Have a look. I will put a few Christmas photos up here and then all others will be in her photo site!

:)

CLICK FOR HAVEN'S PHOTOS




ROHHAD comparisons

I'm doing a little "thing" I'll tell everyone about soon. Well, once we're up and ready with it. But Julie sent a couple photos to me over the break of Mason. These are Mason before and after ROHHAD.

Soon you will see what I'm working on. My only hope is that it actually starts to help people, doctors, moms, dads, and children with ROHHAD.

Before ROHHAD


After ROHHAD


Tuesday, December 23, 2008

ROHHAD updates

First let me explain why I would call it ROHHAD updates instead of just updates. Yahoo and Google propogate the web site by the title you list in the blog post. Therefore having a generic title will not help the world learn about ROHHAD. You will also notice that ROHHAD is in almost every post label even if it is not about ROHHAD on that particular day! So with that said - here are a few updates on Miss Haven and all her friends.

Haven: She has had a cough that we've been watching for the past few days. She has not really been sleeping at night. Friday she was up until 1am and then had a horrible sleep walking experience around 3am and then was back up at 5am on Saturday morning.

Saturday was stressful for us as she slept. She was breathing very heavily and snoring a lot. I have a big humidifier in her room but it wasn't helping. We took shifts checking on her every hour in the night. At 2am I found her in the bathroom. She was sleep walking and had fallen. I got her back to her room and back in bed.

Sunday was even more stressful. She was breathing too quiet and very smooth. Why is this stressful? Because it's not normal and we're not used to it. We're used to loud breathing. So since I couldn't hear her breathing on the monitor we were checking on her even more!

Monday night she was very clingy and needy and her dad slept with her. She usually picks one of us to be the favorite for the day and Monday was dad's turn. So I am up writing!

Mason: Mason is doing well. We received some cute photos of him and his sister the other day! Mason will be traveling to Chicago to meet with Dr. Weese-Mayer on January 12th. We're all excited for his visit. I keep in close contact with his mom, Julie!

Josh: Josh is in Houston for a few tests and MRI's. We're hoping he's back home by Christmas. Please check out Josh's site for his updates. We'll be checking in with Vanessa while he's going through his testing.

Sophia: Sophia was scheduled to do a sleep study this past Sunday but the snow in the north has pushed her appointment out. She met with Pulmonology and concluded that Sophia does not have asthma. She will do her sleep study immediately after Christmas and will have a CT scan of her abdomen (due to severe pains in the abdomen and back) and then will go on to full MRI.

Karen: Karen is anxiously awaiting the arrival of her daughter Nikki. She will be home for Christmas lunch and then will head back to the hospital. We're hoping Nikki will be released from the hospital soon to be in her house with her family.

New Person: I found a new person yesterday who's daughter is 8 years old and was diagnosed with ROHHAD in January 2008. I have emailed and even had some help translating the Spanish and writing a note back in Spanish! Thank you to my friends in South America! I hope to hear from her soon and will let everyone else know about her.

WE WISH EVERYONE A MERRY CHRISTMAS!

We'll be around if you need us. Love to all!
M

Sunday, December 21, 2008

NORD Invites You to be a Rare Disease Day Partner

Help by signing up and encouraging others!
The National Organization for Rare Disorders (NORD) is coordinating the observance of Rare Disease Day in the United States on February 28, 2009. On that day—and in the weeks leading up to it—we will join with others around the world to conduct a variety of activities to raise awareness of rare diseases and the need for safe, effective treatments.

We invite all patient organizations, companies, medical societies, government agencies, and others with an interest in rare diseases and orphan products to join us in this global effort. You can do this by writing to rarediseaseday@rarediseases.org and signing up as a Rare Disease Day Partner.

Office of Rare Diseases
National Institutes of Health
6100 Executive Boulevard, 3B-01
Bethesda, Maryland 20892–7518
Telephone: (301) 402–4336
Fax: (301) 480–9655

ord@od.nih.gov

Johns Hopkins Riverside Christmas Party

WELL!!!! Remember a few months ago when I mentioned that JH Riverside wanted to adopt Haven for Christmas. Well they worked and worked on her Christmas Party and they OVERDID themselves!


We showed up at 5:00pm for what we thought would be a small gathering of the nurses and doctors with a couple gifts for Haven. WE WERE SURPRISED!!!


We had made plans to take Haven to Disney World for the first time ever last Summer but then she got really sick and we found out she has Cancer and we had to cancel our trip. Instead Haven has endured a year of doctors and tests and chemo. My ultimate wish ever was to take her to Disney and meet all the princess that she loves so much!
Johns Hopkins Riverside made that dream come true!!! Haven is going to Disney at the end of January. They raised enough money and gave us a fully paid package to Disney with flights, hotel, food, and more!!!! She is beyond excited. We have been looking up all the parks and everything. We're making sure she sees Magic Kingdom, Epcot, and MGM. Her sister Kendall is also going to fly out from California to be with us making it a complete family package!!!
I can't thank everyone enough for the donations to Haven and for the Disney World package. We have a gift planned for the office when we come back. Here are a few photos from the party. Haven has lived out of her "toy" basket every day since. I find it in her bed every morning!


THANK YOU

Christmas: A Time Of Giving

I can't say THANK YOU enough to everyone in the world that has sent cards, letters, pictures, gifts and well wishes to Haven. This has really renewed my belief in people and in the holiday. So much can be forgotten during the normal day of a normal life. To think a few people would stop in there day to send a note to my daughter was awesome but I NEVER thought the response would be so huge! We are overwhelmed with the love she has received from so many we have never met and from those close to us. I want to thank everyone - but cards will take too long - cards are coming though!!!

Long and Foster of Aberdeen - for the donation to Haven


Comer Construction - for the donation to Haven





Harford County Contractors Association - for the donation to Haven







Mary Jederberg - Handmade a doll for Haven in which she named Snow White



Aleah Scheick - Miss Alaska 2005 - for an overabundance of gifts to our little girl
Grandma Sing and Grandpa Beard Off - for LAUREN!!! We couldn't do it without Lauren
LAUREN - for loving our daughter as much as you do!
Omma and Dad - For always being there and helping with Haven!
Mom and Simon - for coming out and cooking with Haven for a week! :)
Brad and Terry Jones for the beautiful Angel bear and Angel to hang on Haven's wall
Byrom Family for the donation to Haven
Mason Byrom for the beautiful note and pictures of him and his beautiful sister
Barber Family - for the Christmas gift (under the tree!)
Shirley Anderson - for an entire year of gifts and notes and for the glowing flower
Ely Family - for the donation to Haven
Jean Gauthier- for the donation to Haven
Evelyn Johnson - for the handmade story book!
Trish Fiebing at TCAPS (Traverse City Area Schools) in Michigan for the school workbooks!
St. Janes School - 200+ names signed a Prayer List for Haven
Aunt Emmy (Emily) for the beautiful tattoos and Christmas gift (under the tree!)
Andrea Seidel - from making the custom pants for Haven!!!!!
Dana Day and Family - for the gift and Christmas stocking to Haven
Gnesda Family - for the Christmas gift! :)
UNDER ARMOUR - for more than I could ever EVER imagine! All the gifts and donations!
McKenna Grossi - for the doggie (Charlie) and his house!
TO THE MANY MANY CARDS Haven has received in the past few weeks:
Dency Cilona
Vicki Kupec - we love all the postcards from different places
Shirley Murdock
Shirley Anderson
Matt's Helpers
Casey Cares Foundation
Anne Bonney
Joan Bonney
United Airlines Flight Attendants EVERYWHERE!
Shannon Clarke
Andrea Cilona
Delaney family
Aunt Dottie
Great Grandma Bateman
Aunt Candy
Aunt Jill and Uncle John
Great Grandma Bist
Johns Hopkins Riverside - all the gifts - MY Swedish Massage and Kris' Barnes and Noble Card
Paula Dean!!!!
Stephanie and Jason Johnson
Mason Byrom
The Brydges Family
Briggs Kirkland - for the card and Christmas Countdown!!!
Harford Health Services
Sandra Trader
TJ, Mac, and Maggie Haley
Margaret Wallace - ALL THE POSTCARDS ARE AWESOME
Amy Hearn/Jaime Griffon
Sean and Jill Trego
Lori Pometo
Kristen and Phil Barton
Grice Family
Pat Turiff
I know there are SO MANY more....

Friday, December 19, 2008

WIKIPEDIA: ROHHAD

Well if you type ROHHAD in to Google or Yahoo you most likely will not find much. There are a few articles and you will find information on Josh Wooten and possibly find Haven's blog site. Well, I work nightly and constantly on changing that and getting as much info out there as I can. So currently I'm working on a Wikipedia definition of ROHHAD. I'm learning as I go - since I've never done it before but it seems to be coming along great!

Tuesday, December 16, 2008

ROHHAD and NEUROBLASTOMA CANCER

So we spent pretty much all of yesterday at Johns Hopkins. We had a great visit with both of Haven's Oncologists. We had a lot of questions and we received a lot of answers. I will have to post an update probably next week sometime when we have a more clear picture of the immediate future for Haven. Here is what I do know:

1. She is very tricky and very complex - ROHHAD and Cancer mix
2. Chicago doesn't have a "treatment" or really a test as no one really knows about this syndrome
3. Her Oncologists have a plan of attack however, they will meet with the conference again next Tuesday to confirm this is the way they want to go and then will get our approval. Once we approve I will let everyone know what they are doing.
4. We are still waiting on the sleep study results!!!!!! It's now Day 10!

Something we are doing right now - which we hope will show us a good sign. Haven will be off the steroids by January 1st. We are weening her off starting yesterday. I will take her in to the hospital on the 2nd for an 8:00 am Cortisol test. If her body starts making Cortisol on it's own we will be HAPPY - if it doesn't then we will go back on steroids.

I want to say one thing that made me VERY happy. Yesterday we met with the social worker at the hospital as well to review anything that we need and to discuss assistance with Haven. As we all know - unless you live with a ROHHAD child you really don't understand what the heck we're talking about half the time! :) Not a bad thing it's just the way it is. The SW, Lisa, came in to the room AFTER reading about Haven and studying ROHHAD. She even read Haven's blog. I was very happy about that. It seems like most people come in and don't check on her before hand and ask questions that we really feel they should know already. THANK YOU LISA!!!

Oh - Thank you to the Ped. Oncology and Nurse Katie for Haven's Christmas present! Of course, anything about the Princesses is a favorite!

Making Cookies

So the last couple of weeks I have been talking with Julie (Mason's Mom) and comparing our children with what they like to do. It's amazing but we are finding out just how extremely similar Haven and Mason are. Both love the cooking channel, both love to cook, both love to do crafts and create things and both are very much like adults. We've been discussing school and when we feel is the best time for our children to progress in to that world. We've talked about medicines and treatments and Mason's trach. I'm terrified of all of this and Julie has really been a major help to me - mentally.


I wanted to share with you a picture of Mason making some cookies with his mom last weekend!

He just looks like he had the best time - the messier the better!!!! That's awesome Mason!!!!

Saturday, December 13, 2008

THANK YOU!

We have so many to thank for all your love and support of Haven. Sometimes it takes us a bit of time to get cards sent out - as Haven likes to do them and she gets exhausted pretty easy. But we truly appreciate everyone.

Byrom Family - Mason's Mom - THANK YOU so much for the donation to Haven. We are so very appreciative and we can't wait to meet you some day!

Pamela Krausman - Thank you so much for the donation to Haven. It truly is amazing as you have never met my daughter either yet care so much to give to her. Again thank you.

Esther and Emma - We have never met either of them and they sent Haven a beautiful Christmas card of their family and Emma drew a beautiful picture for Haven.

Eva Chan - Wow. We missed you girl! This is Haven's pen pal from Utah. She wrote Haven a lot but then was gone. We received a letter that Miss Eva was in Japan for a while. She sent Haven a beautiful letter and postcard from Japan! Welcome back home.

Shirley Anderson - someday you will have to meet my baby. You send her something about every week. We truly appreciate your love for her.

My favorite nurses at JH - Dana, Dawn, and Peggy - can't wait to see you guys this week!!! Love you!

Aleah Sheick for the amazing care package for Haven!

EVERYONE that has sent her cards and notes over the past few weeks. It is amazing. We've received cards from people we've never met and people I have never talked to. I am overwhelmed at how much people care for a child they have never met.

Thursday, December 11, 2008

Baltimore Ravens Tommy Z

Tom Zbikowski, or Tommy Z found out about our beautiful Haven from Emily Ries at Under Armour and he sent Haven a autographed photo of him and told her he hoped to see her at a game some day! She was so excited....not that she knows what football is but because Raven rhymes with Haven and Grandma B-Honey loves the Ravens more than anything.

Thank you so much - she can't wait to frame it and put it up on her wall!!!

Sports Marketing Dept at Under Armour


A huge thank you to the Sports Marketing Department at Under Armour. They worked on this pretty hard as you can see. It's a huge card with stories and pictures from everyone in the department. Haven was freaking out.
She also received a beautifully wrapped Christmas present from the group - however - we decided to put it under the tree and wait for Christmas.

Thank you - Ted Gladue, Tori Hanna, Jason Parker, Patty Rawlick, Emily Ries, Jeff Locklear, Emily Sammis, Anne Bonney (not the pirate), Casey Connor, Jamie Norwood, Elise Conway, Ryan McDermond, Jackie, Kevin Culley, Emily Hammer, Walker Jones, Shea Maddox, Shawn Flynn, Claudia Farace, Ed Tomlin, and Allie Kupec.

We are totally amazed at the work you put in to this card. The photos and stories are awesome.

Wednesday, December 10, 2008

Haven becomes Paula Dean with Grandma

Haven and Grandma looking up recipies on the computer to modify the cookies


Grandma Virginia came out to spend the week with Haven and bake for Christmas. All recipies are "Dad" approved - meaning they are mega low sodium and mega low in sugar. He has created his own recipie book for Haven over the past year. They modify a lot of what they see on the cooking channel. Haven's favorite cooking shows are Paula Dean and Rachel Ray. She watches the cooking channel all the time.

Here are a few photos of them cooking
Whipping up the cookie dough

Getting ready to scoop it out! Check it out - they have matching aprons. Grandma's says: Cookie Maker and Haven's says: Cookie Taster

Thank You Under Armour

Well about 2 weeks ago Under Armour came to me and asked me about Haven and if they could do a little write up for the internal company site to share Haven's story. I am so thankful for Under Armour and all the support they have given to our family. Since publishing the story about Miss Haven she has received quite a few cards and just loves it. The mailman is really working for her this year. Many of the people we don't know but the love they show to our daughter is amazing. Everyone asks about her all the time and constantly let me know they are thinking of her. Keep 'em coming! :)

I also want to thank the Moffatt family for their donation to Haven through the donation button her blog. It is truley appreciated.

THANK YOU ~ THANK YOU ~ THANK YOU ~ THANK YOU

Sunday, December 7, 2008

Sleep Study

Starting the wiring process


All wired up and ready to sleep.

So we did the sleep study on Saturday. I drove them up there and stayed until about 11pm. I was a bit concerned about the snow, which just happened to start right before we left to go to the hospital. Then I received a few texts that Haven kept waking up when the tech would come in the room. She did finally fall asleep around 2am until 5:30am when I arrived to pick them up.


She did a few of her screams (but not major ones like at home) and there were quite a few choking instances and then she'd half wake up and go back to sleep. Kris said this happened quite a bit in the 3 1/2 hours she slept. One was so bad he was beside her bed before he even realized where he was. He said the tech was a bit shocked at how fast he was there.


We finally got home around 7am and everyone passed out until around 10:30am. Haven was really wired up that night (with wires not caffeine) and I'm not sure if one of them bothered her port or not but around 12pm Sunday she was complaining of "crunchies" in her chest at the port site. Crunchies usually mean she's going to be sick but she kept saying her chest was crunchy and hurting a lot. We did a few slow breathing exercises and I decided to stretch her out - as it usually helps me. The loudest pop came from her chest and all of the sudden her breathing was much better. She was still in pain but I had her lay on her back to open her chest and we did more slow breathing. She was asleep in 5 minutes. She slept for 4 hours. I was amazed. Woke up and no more pain.


We are waiting the results of this sleep study. I have a feeling this one will be more important and show more than the last.

Friday, December 5, 2008

Updates

Well....Haven has had some issues with her back and this morning at the crack of dawn was a panic wake up and jump in the car to Johns Hopkins. We got in and met with two doctors who throughly examined Haven's back and spine. The big concern was a possible fracture in the vertebrate due to all of her medication, steroids, lack of vitamins, and no milk for a year. Why no milk - we limit sodium due to steroids.

After multiple CT Scans and HOURS and HOURS at the hospital - seriously we didn't get home until dinner time - Haven's spine is fine. There is no sign of a fracture or displaced disc. So it seems as though we just need to watch her during activity and make sure she doesn't bounce a lot.

While at the hospital we received many calls from all different doctors.

Sleep study is now scheduled for tomorrow night. I have to have Haven at Mt. Washington by 8pm and then pick her up at 5:30am on Sunday morning. She wants her dad to stay with her so I will stay until she is completely hooked up to the machines. Probably get home around 11pm.

Haven's eye doctor called to schedule her eye surgery. We still need to discuss this. I told the doctors I didn't want any surgeries before the holidays and then with Haven's birthday only being a few weeks after Christmas I really don't want to do it then. But really when is there a good time.

Wednesday, December 3, 2008

A few appointments

We've got a busy month - not including Christmas and preparing for Haven's 5th birthday party. Which she has already been informing us of how we should decorate and what we should cook.

Dec.- Meeting to have her back examined and X-rays of the lower back (see post below)

Dec. - Flushing of port and lots o'lots of blood work - Meeting with Oncology doctors to review everything

Dec.- Meeting with Dr. Cooper to review everything and at closing JH Riverside is having a Christmas gathering for Haven. They have been working hard on a special Christmas for Haven. We saw the posters and Haven's pictures all over the doctor's office.

On Call for Sleep Study. They could call at anytime with a 1 hour notice for Haven to go in for her 24 hour testing.

Pulmonology - I just scheduled this to check for results of her Sleep Apnea, Hypoventilation testing, and examine for ROHHAD-NET.

Tuesday, December 2, 2008

Scary night

Well.....today was a Lauren day...so Haven was exhausted and sound asleep by the time I got home around 6pm. She slept until 7pm when I woke her up to have some dinner. All a normal night until she decided she was gonna have a spurt of energy. She never plays so when she does we feel like she's a newborn learning to walk. I had the video going of her wrestling around with dad and then she started jumping all excitedly. Not even 20 seconds of jumping and she just fell to the floor. She couldn't move and she was just grunting.

We were next to her in a milisecond but it felt like forever. We got her up after a few minutes and had her lay across the chair. Her back was hurting her. It had to hurt pretty bad as Haven doesn't really feel pain due to her condition. She really doesn't know pain like a normal person so I knew it was bad.

I rubbed her back for a long time and dad kept talking to her to make sure she was ok. She couldn't stand up for a few minutes so we kept her stretched over the chair. After a while of rubbing she was able to stand up and walk. I got her in to bed and made sure she had a lot of pillows around her. Dad stayed with her for a while.

I talked with Vanessa about it and she mentioned that her son Josh used to have the same issues. She used to use a lot of pedialyte. Which I have read that electrolytes and dehydration are a major issue with ROHHAD. So we will be stocking up and loading the baby girl up.

Thanks for the tip Vanessa - it is really awesome having someone to talk to about this and who is very well experienced in what should be done. :)

Monday, December 1, 2008

ROHHAD CHILDREN

Below is a cross reference post from Vanessa Wooten's blog site - I really hope you have had a chance to visit it and continue to check on Josh and their family. I am very thankful to have found her and hope to find more mom's out there!

Josh at the Special Olympics

I would like to introduce everyone that reads this blog to Joshua Wooten. He was diagnosed with ROHHAD in 2005. The Discovery Channel did a documentary on Josh and you can see it at Vanessa's blog site. Hopefully I will be able to visit Vanessa and her family some day and to meet Josh. Josh became the poster child for the disorder after the Discovery Channel - I would love for the Discovery Channel to replay this so more people can see it.


Josh takes 1st place - CONGRATULATIONS!

Josh's ventilation system that keeps him breathing

I have contacted his mother Vanessa Wooten and am able to talk with her. Where did I find her - FACEBOOK! I am finding that this site has connected me with more people than I could imagine. The Wooten family lives in Texas.

Other Children of ROHHAD - please see Vanessa's site for more info on these other children.


Leigh Ann W. of Kentucky. She was born April 1990. She began having symptoms at about age 2. Leigh Ann passed away of complications in February 1998 (at 7 years 10 months of age).


Jenna S. of Connecticut, who is now 6. Jenna seemed fine until she suffered a seizure at age 3. She was officially diagnosed at age 4. A major (2 and a half hour) seizure in June 2007 set her back by affecting her mobility and speech. (I did read about this is Dr. Weese-Mayer's report - but not name or location).

Scott C. of Illinois was diagnosed in 2002 at the age of 4. He is now 10 and currently still sees Dr. Debra Weese-Mayer. I am in contact with his mom.

Mason B. of St. Louis, Missouri - he was 3 years old when diagnosed. He was just diagnosed with ROHHAD and doctors decided to place a trach.

This is Mason B!


Nikki B. from Australia, was just diagnosed at age 7, but doctors there were keeping her in the hospital. In fact, at last report, Nikki is still in the hospital (for more than 12 weeks now).

This is Nikki B!


I am finding it comforting talking to these other mom's as they have already gone through what I will surely go through and what other mom's will go through. The more of us that talk about it will bring more attention to this rare disease. We should create our own organization as it seems there isn't anything out there on this.

This syndrome is scary because no one knows about it and usually by the time you know you have it then it could be too late. I have no idea what the doctors are planning but we have to decide if we're going to Chicago or not. I have sent Haven's detailed spreadsheet below to all of her doctors and the doctors in Chicago who have placed it with her records.

I also contacted NORD - National Organization for Rare Diseases as recommended by Haven's pediatrician. This disease is so RARE that they don't even know about it. They asked me to go back to my doctor and check the spelling. So I sent them all related articles, my blog site, and Haven's article from her Endocrinologist. Now I know they know about it.


Ok.....on to the next battle of the day and more doctors to drive crazy! Even if Dr. Badgett says I'm not driving him crazy I plan to! :)