Peanut Butter Recall

Incase your child talks really loud while your trying to hear the news....Here is the info on PB recall. Haven is allergic to nuts so we don't have to worry but anyone else might want to check it out!

KNOXVILLE, Tenn. (WVLT) ---Hy-Vee Inc. is recalling bakery products with peanut butter distributed in seven states as they could potentially be contaminated with salmonella.

Hy-Vee Inc. is voluntarily recalling the following products made in its bakery departments because they contain peanut butter that has the potential to be contaminated with salmonella: Peanut Butter Cookies, Monster Cookies, Peanut Butter Reese's Pieces Cookies, Peanut Butter Chocolate Chip Cookies, Lunchbox Reese's Pieces Cookies, Lunchbox Peanut Butter Cookies, People Chow Party Mix and Assorted Truffle Fudge. All sell-by dates are included in this recall. The products are sold in various packaging and quantities and have a Hy-Vee price label attached. All items should be destroyed or returned to Hy-Vee for a full refund.

Perry's Ice Cream announced a voluntary recall of select ice cream products containing peanut butter because the products have the potential to be contaminated with salmonella.
McKee Foods Corporation announces voluntary nationwide recall of Little Debbie Peanut Butter Toasty and Peanut Butter Cheese Sandwich Crackers Because of Possible Health Risk .
These two sandwich cracker products were manufactured for McKee Foods by Kellogg Company.

On January 14, Kellogg Company announced a precautionary hold on several of its peanut butter sandwich crackers while FDA and other authorities investigated Peanut Corporation of America (PCA), one of Kellogg's peanut paste suppliers for these crackers. McKee Foods followed that action with a voluntary withdrawal of the two Little Debbie peanut butter sandwich crackers. PCA has now expanded their earlier recall to include peanut paste and peanut butter, prompting Kellogg to immediately announce a recall of certain cookie and cracker products. Accordingly, McKee Foods is announcing this recall of its two peanut butter sandwich crackers.

Update on Haven

Quote from Haven's Oncologist that sticks with you: "I feel a lot of pressure. Chemo is a slow methodical process that you have to tweak to make right and it takes time. ROHHAD is a scary syndrome and can become a life threatening emergency overnight. Time is against us with Haven".

Haven had a full day of chemo on Friday. Dad and Haven got in to the hospital around 7:45 am to get ready for Haven's 8:00am blood test for her chemo levels. Then immediately after that started the other chemo for the day. I heard that after they gave her the Benedryl she passed out for a while. Let me tell you, when we do all day chemo treatments at the hospital and Haven is just laying in the bed waiting for the bottle to empty (6 hours later) it can be a LONG day! So sleep is always welcomed......I always request it to be taken through the port instead of orally! It hits her faster and helps her sleep quicker. Plus throw a hot blanket on her (they have these heated like from the dryer at home) and she is OUT!

Kris met with Haven's Oncologist for quite a while in the morning. Then I got a call around 11am to let me know what they had discussed and if there was anything I needed to add or if I had questions. I had to work so I couldn't be there. I know Kris gets nervous going in by himself because I'm the one the keeps track of dates, surgeries, doctor appointments, and research of ROHHAD. So I sent him a text of a few key items that he needed to discuss.

Haven will be having another surgery planned. We're waiting to hear from her surgeon as to when he feels it should be. Her eye surgery is March 26. This other surgery will be for the massive lump on her back. No one knows what the lump is but it is bothering her a lot lately. So once I hear more about that I'll update everyone. We will also be meeting with an Orthopedic doctors for her back and starting physical therapy as she is having too many back pain issues.

I received a printout from the doctor of Haven's weight and height since last January. I wanted the comparison for my records from the past year. It also shows her blood pressure each week and temp. So this was very exciting to me! I'm easily excitable!

We are now required to do a daily log of any changes and anything we notice. So we can look back on the records in one month and decide if she should be off this chemo and put on something else.

Haven's chemo dose was increased on Friday and Haven and I will be at the ER at Johns Hopkins on Monday morning at 7:45am! Whew.....luckily I have the day off and don't really like sleeping in! :)

Love to all!
M

ROHHAD Updates

Well I haven't updated everyone in a while on all the angels with ROHHAD. There are quite a few things happening. I'll start with my baby first!

Haven with a Paula Deen autographed picture

HAVEN: She is at the hospital right now getting her levels checked and has a full day of chemo. They will be meeting with her doctor to discuss how everything is going. They will also be discussing possible back surgery for Haven, upcoming eye surgery, upcoming pulomonology appointment and anything we've noticed while on this daily chemo. Haven is currently sleeping about 4 hours a night with constant wake ups and major pottying problems. She has gained 4 lbs since the beginning of December and 2 lbs in just the past 12 days. I have been keeping Haven's FLICKR site updated with photos from years ago to now. We're also excited to have Haven featured on MAKE A CHILD SMILE for January. We're working on her birthday party for next weekend and then we're off to Disney for a week!

Mason and his dad on New Years Eve

MASON: I talk with his mom daily! He is doing pretty well. He was scheduled to see Dr. Weese-Mayer on January 12th but that fell through with insurance not accepting. ROHHAD is a rough syndrome - no one knows about it and insurances don't want to pay for something that isn't known about. Mason has been slightly congested and since he is on the ventilator whenever he sleeps there house can get crazy! I love the stories. Every time he coughs or sneezes his ventilator alarm goes off and everyone is immediately in his room. They are on the same schedule as we are...wake up about 4 to 5 times a night. Funny story: Mason was sleep walking about a week or so ago and they woke up with alarms going off and all this craziness. Mason remained connected to the ventilator and dragged it down the hallway with him. I could not stop laughing.....I know what we go through at night and I could imagine waking up to all that! We also found out that Mason is a huge fan of Minnie Mouse! :) His baby sister, Cameron, is always stealing his Minnie. PS: I'm pushing Julie to get a site up for Mason!!!

Sophia and her big sister

SOPHIA: Miss Sophia has had a REALLY bad time through the holidays and beginning of the new year. I keep in touch with her mom as her schedule allows. On Dec. 27 Sophia had her sleep study and slept the same as at home. Waking about every hour, talking and crying out in her sleep and as she normally does everyday, woke up at 5:30am and threw up. On Dec. 30th Sophia had her MRI for the full body - to locate any masses. This trip ended up lasting 6 days in the hospital for Sophia. The conclusion of severe sleep apnea led them to rush Sophia into surgery to remove her tonsils and adnoids. Due to her low oxygen level Sophia remained on oxygen most of the time. During the MRI they noticed that Sophia's lung was full of fluid and was essentially getting squished. They suctioned it out and then again during surgery they had to suction it out again. Today Sophia is doing a bit better. She has another sleep study at the end of February, meeting with behavioural medicine. Her Cortisol levels and Prolactin levels have been pretty high so they are waiting on word regarding those. You can check out Sophia's web site HERE or on the side bar of Haven's.

Josh and his two cousins

JOSHUA: As you know - just at the holidays Josh was headed to the hospital for some major testing and meeting with his Cardiologist. It seems as though Josh has developed a pretty major sinus infection that alerted the doctors to start a test for Cystic Fibrosis. They don't believe he has CF but it's definitely best to rule it out - who knows what this syndrome brings with it. His Pulmonary tests showed more evidence of airway obstruction and he will now also use a steroid inhalent. Josh is on the ventilator 24 hours a day. He is allowed to take small breaks from the ventilator but he is watched closely. He has had a few high temperatures over the past week. We're constantly checking in on Vanessa's blog to make sure Josh is doing well and the entire family. They have some great photos up that are awesome. I love to see everyone.

NIKKI: I have not heard from Nikki's mom in Australia since right before the holidays. We hope to hear from her soon! Hope all is well down there and Nikki is home or on her way home.

Haven's Surgery and My Hives!

This is getting annoying....everytime I talk to doctors I get hives now! I have talked to 4 doctors in 20 hours........

A few notes:

Haven has surgery on both eyes on March 26th

Pulmonology is rescheduled for January 23rd

Haven is not in chemo today - it is rescheduled for Friday Jan 16 - after blood work

She will still have blood work done tomorrow morning to check her levels

Make A Child Smile

My baby is one of the featured children on Make A Child Smile. MACS features kids that have a life threatening illness and encourage people to send cards to them to make them smile.

If you click the link above or HERE you will see Miss Haven. She is absolutely adorable!

Thanks Randi

End of 2005

So my friend from a billion years ago sent me some amazing photos of Haven and her friends Ashley, Lexy, and Annika. I can't believe it....there are many photos in my house that Randi took of Haven during the time she was watching her during the day. Check them out on her flickr site. I put them in the Haven's friends folder.

Haven's Schedule

Kris took Haven in to the doctor on Friday to have her levels checked again. I honestly didn't know what high levels meant or what we were even looking at. After having her levels checked Kris met with Dr. Paz-Priel to review everything.

Haven is now scheduled to be in the hospital to have her levels checked three times a week - Monday, Wednesday, and Friday. She still takes the chemo two times a day (8am and 8pm) with her other medication. We just lowered the dose temporarily. Once she is stable they will again increase the dose.

Normal levels on this chemo (which I just found out on Friday) are at 150. Haven was at 300. So double the normal. I haven't listed the name of her chemo because it's too confusing when you read on it. Usually this chemo is given to bone marrow cancer patients or Leukemia patients. So it doesn't make sense to the normal person when they check Wikipedia or something. But we understand why she is on it and how they came to decide to use this one.

This week:

Bloodwork - Monday
Full day chemo - Tuesday
Bloodwork - Wednesday
Pulmonology - Thursday
Blood work/Dr. Paz-Priel - Friday

Kris will take Haven every day and I will meet with him on Thursday at the hospital. I have never met the Pulmonology doctor and have a list of questions for him.

ROHHAD / Neuroblastoma Treatments

Here is an update on Miss Haven – it’s good with the bad

Cortisol levels are great. Haven is producing Cortisol on her own which is AWESOME! We were a little worried about this but maybe this means we won’t need to do growth hormone shots in 09! It’s always a plus when Haven has good news. We hope to see her start growing now.

Bad news: Haven’s body wasn’t handling the new chemo very well. She had her levels checked today and I received an email from her doctor that they were way too high. So we were instructed to skip tonight’s dose of chemo and to only do half the dose tomorrow. She will go back to the doctor at 8 am on Friday to get her levels rechecked. We hope they level out or she may have to switch chemo treatments already.

I have been asking the doctors about her symptoms but I still have not gotten an answer on that. Since starting this new chemo last Wednesday she has not slept for more than 4 hours in a night. Her gums are always sore and I have been loading her up with bubble gum flavored Ambesol. She has been peeing like crazy and she is achy all over. We were a bit concerned this afternoon. Haven fell asleep around noon and could not wake up. Kris tried waking her up many times and she just couldn’t do it. He finally got her to get up around 5pm but Haven sleeping like that is very unusual. I was sure we’d be at the hospital but she seemed fine while I was home.

I’ll update again after her levels.

Kris did take some video yesterday of her sleeping – I guess it was pretty crazy. I haven’t looked at the videos yet but I’ll post them up.

Haven's 5th Birthday Bash!

Now that the holidays are over we are starting to prepare for Haven's birthday party. She has already informed us of everything she wants to decorate with and what she wants to do. I have ordered her invites - so expect to see those.

Friends and Family
Date: January 24th
Time: 1:00 pm
Location: Our house

Family - Extra Birthday Bonus
Date: January 25th
Time: 11:3o am
Location: Chuck E Cheese

Why two birthdays? I want a birthday party at the house for all of Haven's friends and family to be able to visit and be relaxed and have room. Haven wants to go to Chuck E Cheese. So we have agreed to do it two days and she is happy with this arrangement. Haven has been begging and saving Chuck E Cheese coupons for 2 months - how can I say no?

I think after this year we might move her birthday to sometime in May. We have to pick a good date but having Kris birthday 2 weeks before Christmas and Haven's 3 weeks after Christmas is crazy! I definitely didn't do very well in planning! :)

Love to all

The New Year: 2009

We hope everyone had a wonderful holiday break. We definitely had a nice enjoyable much needed break. We're trying to get back in the swing of it now and get back to "real life" as much as possible.

We have so many people to thank for everything they have done for Haven this year. We want to thank everyone that has donated to her - everything is much appreciated. To everyone that sent her gifts and cards - THANK YOU. To Johns Hopkins Riverside - THANK YOU! Our Disney trip is right after Haven's birthday!

Over the break I RARELY looked at the computer (can you believe it) but here are a few donations that came in that we want to say THANKS!

Aunt Dottie and family - thank you for the donation
Rick Family - thank you for the donation
Stilwell Family - thank you for the donation
Shockey Family - thank you for the donation

Now back to your regularly scheduled program!
Love to all

ROHHAD: Genetic and Rare Diseases (GARD) Information Center

I AM BEYOND EXCITED!!!!!!

I have emailed NORD, ORD, GARD, and ORPHA regarding the syndrome ROHHAD. As none of these had a listing for ROHHAD and all of these are organizations for rare diseases. I would like to share an exciting email I received back from GARD today!

Summarized version of the French study on ROHHAD vs. ROHHADNET

Dear Ms. Fowler,

You recently submitted an online e-mail to the Genetic and Rare Diseases (GARD) Information Center about ROHHAD (rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation). You mentioned that your 4-year-old daughter has been diagnosed with ganglioneuroblastoma cancer and ROHHAD. After conducting research on your own and consulting with your daughter's physicians, you have come to find that there is very limited information available about this diagnosis. You wrote to us to request that we add ROHHAD to the ORD list of rare diseases.

We wish to thank you for bringing this condition to our attention and in response to your email, we have created an online question and answer page on this topic. If you'd like to view this information, we invite you to visit the links listed below.

Visit the link to view a Q&A about ROHHAD. CLICK HERE!!!

Visit the following link to view resources related to this condition. CLICK HERE!!!

THANK YOU FOR LISTENING!!!!