Sunday, February 27, 2011

Haven meets Sophia.......

Sophia was diagnosed shortly after Haven received her official diagnosis - although Haven's doctors were secretly figuring it out a year before! Finally almost 2 years later the girls get to meet! Thank you to Maureen for traveling down from Massachusetts.

We went out to dinner on Friday night - above is Mackenzie, Sophia, and Miss Haven! This picture definitely showed me how small my girl is - She is a year older than Sophia and about a foot shorter!

Mackenzie made Haven a beautiful note and they brought her way too many presents!!!

The next day they came over and enjoyed a day of Wii!

Hanging out at Haven's grandparent's house for the day!

Double sided hug.....Not sure Haven knew what to make the girls! :) They love to hug....

Trying hard to get my girl to goof around.....Sophia and Mackenzie are PROS!!!!! :)

Love it!!!

The girls had an awesome time and we really enjoyed them coming down for the weekend. Can't wait for the next visit this summer.....maybe I can even get up there some time!!! Love you guys - great visit!!!

Thursday, February 24, 2011

New Children's Hospital at Johns Hopkins

This photo was taken from the Mix106.5 morning crew Facebook page. I wish I could've gotten over to Hopkins to see them but Haven didn't have any appointments this week. If you live in MD and have been following along the radio station has been doing a 3 day radiothon at the hospital. They have spent lots of time with the kids in the Children's section and shared lots of stories with everyone. I started listening to this station when we moved her in 2007 and my first radiothon was in 2008 - only then I didn't pay attention because we were living at Hopkins at the time. Haven had just gone through a 14 hour surgery and was about to start a multiple type chemotherapy regiment for her cancer. Then we spent the next 2 full years living at Hopkins testing different chemos for ROHHAD until we finally figured out what was working.

I love the stories of the other children and it is true - you do become a family at Hopkins....not just a patient with a fast food number! And then sometimes when you've lived there as much as we have it becomes the norm and what used to be the norm isn't as comfortable anymore. A huge example was when we had to rush Haven in to the ER about two weeks ago. We realized that sitting there at her bedside while she was getting wired up and port accessed that we were feeling at home. As you can imagine - Haven's Oncologist is not happy that we feel this way and that's what he has worked so hard to get away from. He wants all of us out of the patient mind set....but after this long it's become our home.

We will probably forever live in MD and this is because we just can't imagine leaving Hopkins or Haven's doctors. We trust them with our daughter's life and you can't give anyone more trust than that.


Above is the concept of the new Children's Hospital at Johns Hopkins! You can check out the rest at the Johns Hopkins web site by clicking the link and watching the video. I remember when we first started coming to Hopkins it was just a pile of metal.....we can't wait to see the new building and share it with all of you!

Sunday, February 20, 2011

Haven's Mysterious Condition Identified as ROHHAD


Haven Fowler was born a healthy baby. She remained so until the age of two and a half when she began to gain weight very rapidly, gaining 40 pounds over eight months. She also started having unusual neurological symptoms, including hallucinations, sleep-eating and sleepwalking, irritability and profuse sweating.

Month after month, Haven’s parents took her from doctor to doctor, each one increasingly bewildered by her mysterious symptoms and unable to find an answer. Finally, the Fowlers — then living in California — were told that if they wanted answers, they needed to go to Johns Hopkins. And so they did. About three weeks after her cross-country trip to Baltimore, Haven suffered a serious seizure, which landed her at Hopkins Children’s, where the mystery of her condition eventually would be solved.................................... READ MORE!!

Friday, February 18, 2011

WHOO HOOO - Hopkins Caring for Kids



Check it out from Hopkins site!!!! I know the radiothon hasn't started yet but it's good to see our ranking!!

Wednesday, February 16, 2011

Hopkins Children’s Caring for Kids

I want to thank everyone who has donated so far to Johns Hopkins Children Center. An amazing hospital helping so many kids worldwide. I don't know all the doctors in the Children's wing but I know our's are AMAZING!

Check out our counter now - and we still have two weeks to continue raising money! Again - anything helps - even if you only have $1.00!!!!

Tuesday, February 8, 2011

A day at the ER

We had a bit of a scare yesterday when I received a phone call from Haven's dad that she had complained of chest pains two different times at school. She didn't want to come home but instead wanted me to bring her some medicine to make it stop. I don't have medicine for chest pains......

What is more important about the chest pains is that Haven doesn't feel pain - so when she does we know it's serious. I called her Pediatrician who told us that she wanted Haven in the ER asap to have an EKG. She didn't have the equipment at her practice.

PS: I will never go to an ER for Haven without an appointment first. It is so easy to sit there for the 7 - 8 hours if you aren't wasting 3 - 4 hours in the waiting room!

Haven's pediatrician called the ER and I sent an email to her Oncology doctor. He also called the ER to let them know we were coming. We got there and her room was ready and all the doctors were up to speed on the Neuroblastoma and ROHHAD.

This is Haven with a nurse she used to have at her Peds office. They hadn't seen each other since 2009 when her nurse was transferred to the Children's ER at Hopkins. It was so awesome to see her!

Haven had the EKG as soon as we got in to the room. Then they hooked her up to the heart and respiratory monitors. I requested a pulse ox to watch her.

Then it was off to chest x-ray.

She has a beautiful heart and the lungs look great. I am very sure her inhalers are working. The doctor at the ER let me see the x-rays from January 3rd and compare. These look much better.

Next it was time for labs. Haven always monitors the nurses when they are getting the port supplies out. She makes sure they have the correct needle and vials before putting it in to her chest. Unfortunately, no one accesses her port as good as her nurse Katie. But she did well.

Time for the flushing. Haven flushed it and put the Heparin in all by herself. She likes to do it because if the nurse puts it in too fast she can taste it and according to her it's disgusting!

Her sodium levels and cardiac enzymes came back great.

In the end everything tested out fine. Obviously with ROHHAD and her chemo it's not good to tempt fate with the heart and a cardiac arrest is very possible in our children. The fact that Haven felt the pain is more important - since she just doesn't feel it like a normal person.

She will be seen back in Cardiology next week for another EKG and the heart halter again. She will also be back in chemo next week and have a thorough exam with her Oncologist.

To end out the long day and evening Haven came home to wiggling her tooth. Within 30 minutes of wiggling and pulling the tooth was out and she was ready for bed! Tooth fairy was put to work!

Somethings are perfect when you don't feel any pain!