Physical Therapy

Haven has done an AMAZING job at her physical therapy. She goes every Monday and Wednesday for one hour. Her therapist is great with her and Haven has grown really attached to her. Every visit they decide what color they are going to wear next. So they can match.



Haven had a goal to walk up the steps using her left leg without holding on to anything by July --- she accomplished that goal this week. She got to pick 3 stickers for the day.

Grandma and Grandpa visit from Utah

Grandma and Grandpa came out to visit Haven for about 5 days. Haven had a blast! Always fun when the grandparents come to visit. We let them take our baby girl out for a day of fun with no parents around. They snuck off to Broom's Bloom Dairy Farm. If you haven't had their fresh ice cream...you're missing out! It is FANTASTIC!!!


Then they took Haven out for a day of shopping...what does my girl pick???? A summer full of learning- lots of reading and math work books and prep to get ready for 2nd grade!

Haven and her Grandma! They did so many workbooks and we watched lots of HGTV! I didn't know we all loved that show. We watched so many house hunter episodes. We had a lot of fun.

Personal thank you to Grandma! I didn't have to touch a single dish for 5 days, every time I went to the kitchen they were clean. I didn't have to touch laundry - it kept magically appearing folded on my bed. I never had to make a plate of dinner - it kept appearing on the table in front of me! I was able to go to the movies and see grown up movies for almost 6 hours (we snuck two movies in) and was never worried about what was happening at home!

Shhhhh.....this picture is a surprise! Check back in a few days to see what it means! ;)

Oh and let's not forget my furry daughter.....Deezy says thank you for coming out and playing ball with me and loving me! :)

ROHHAD child wakes from coma after 38 days

Natalie is a ROHHAD child from Malaysia. We met her and her mother on Facebook and have come to know them very well when they joined our ROHHAD site. On April 26th Natalie fell in to a coma while at the hospital. We are extremely happy to report that Natalie has come out of the coma and is smiling. She has shown us the strength and will she has to fight this horrible syndrome.

We can't begin to tell everyone how happy and excited we are to see her photos and to know she has a huge smile on her face.

Lots of love to Natalie and her family - thank you for letting us in on your life.

Another Angel Welcomed by our ROHHAD Children

In January I told the world about Heather, who after 18 years of searching, was finally diagnosed with ROHHAD after seeing Haven's special on Mystery Diagnosis. On Friday, May 27th, Heather passed away leaving us with a void in our hearts but strength knowing another angel is watching over all of our babies.

We are deeply saddened by the sudden passing of Heather and I will hopefully be able to talk to her mother tomorrow via phone. I have wanted to give them grieving time.

We love you dearly Heather and thank you for letting us know and learn about you.

Always ~~~~

Grandma and Grandpa Virginia visit!!!

In May Grandma and Grandpa came to visit from Virginia. Of course there is always lots and lots of reading to do. Haven will read for hours non-stop.

Grandma and Grandpa set up a date for them and Haven over the weekend. They got dressed up in their best outfits
and headed to a tea part at Tea by Two. Of course Haven was overly excited. She has been wanting to dress up in a beautiful dress. This was given to her by another ROHHAD family in Canada. So what a perfect time to wear it.

Eating her scone and drinking her Princess Catherine tea....which by the way she and Grandma got me my own bag of! :) Thank you

Grandma, Haven, and Grandpa enjoying their tea and scones.

After their amazing tea party they headed over to a Paint Your Own Pottery place and Haven created her very own tea cup and saucer.

She worked hard on it for a couple of hours.

Then she dried the paint and we had to wait 4 days before picking it up as it had to be cooked.

Here is the final product.....very nice if I can say so!!!

Allergic to what????

At age 1 Haven had some zucchini bread that my friend made - I didn't know it had hazelnuts in it. We found out about 10 minutes later when Haven developed hives and blisters that covered her body for days. We ended up getting an epi-pen and keeping her away from nuts.

Well it's been 6 years and we're very strict about nuts and her staying away from them. She has been asking me to test her with peanut butter but I just don't have time to do an extra day at the hospital. So I have refused.

The other night she and her dad were making scones and decided they would use dried cherries and golden raisins in the scone mix since the blueberries would smash. Well during the cooking process she and dad snuck a few cherries and raisins. It wasn't 15 minutes later that Haven broke out in to an extreme rash that turned in to little green blisters. I immediately double dosed her with Benadryl and emailed her Oncologist and Pediatrician.

This was within 15 minutes of eating the cherries and right after the Benadryl.

She had already noticed the blisters before we knew about it and was hiding down the hall scratching the blisters open. Then decided she would try to fib and tell us her arms had been like that since yesterday and there was no need to go to the hospital. Only problem....she has parents that watch her like a hawk and we know every spot on her. This was sudden.

The only blister not scratched open by my daughter...because I was able to stop her.


To my surprise (which really I should've known since he's emailed on weekends before) - Haven's Oncologist wrote back within 30 minutes on a Friday night around 8pm! He doesn't have to...why should he even be checking emails - he has a family!!! BUT HE IS AWESOME! He wrote back immediately and was very concerned. We already had Haven signed up to do a RAST test on her next Oncology visit and we had just declined a renewal of the epi-pen the week before. We haven't had any incidences.

I pretty much sat and stared at Haven all night. Mostly watching for any changes in breathing - especially since she already has a breathing issue with this syndrome - and for any lesions around the mouth. We made it through the night but her pediatrician got in touch with me next. She has a new epi-pen and is now set to see an allergist to find out exactly what she is allergic too. I did some research and thought it might be possible that she is allergic to sulfa. But Oncology came back and informed me that her Bactrim that she was on for 2 years contains sulfa. So we know that isn't the issue.

Noted the cherries did say it is packaged in a facility that works with tree nuts! Honestly I have never worried about that since nothing has ever happened - now I read and question EVERYTHING!!!!!

Update on Miss Haven

A few weeks ago (april 24) Miss Haven had to go in to Oncology just for lab work. We are back to doing her IVIG every 8 weeks and labs every 4 weeks. We're trying to see if we can push it out again and see if her immune system has kicked in. She heads back in to Oncology on May 23rd for IVIG.

On May 11th Haven also began physical therapy. We were very excited to finally get this going as we believe this will help her a lot. She really liked her therapist and she stayed strong the entire hour. The first visit was to just test her strength and abilities.

Here she is doing a sideways skipping. She did steps and hopscotch stuff. She has been given 50 visits and will go twice a week for an hour at a time. Tonight is her 2nd visit.

Box Tops

First we want to thank EVERYONE that sent Haven box tops for school! She was able to take in 129 box tops - which put her class in first place WINNING the Box Tops trophy for the month of April. Her teacher was named Box Top Princess and given a tiara to wear. Total for her class was around 720 and the next class was in the 500's! So Haven's really pushed them ahead.

BUT we have one more month - well I guess 1/2 month at this point - to get MORE Box Tops!
The box tops for Haven's school are going to build them a new playground - which they desperately need. Right now the kids have to play on the blacktop or back parking lot as the current playground has peeling paint and is in really poor condition.

You can send box tops to:

Fowler House
939-I Beards Hill Road #104
Aberdeen, MD 21001


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Keeping busy

Well as many of you know we have been OVERLOADED and busy......I'm so happy it's spring finally. Other than all the ticks - which I can't understand why it's so bad this year - we're enjoying the outdoors. My only issue is the ticks - we live in critter country!

We found a new park to play in over in Elk Neck forest. Deez had a blast running through the woods and playing. She loves to just run.....she is great at staying close to us though and when we call her she is right back at our heels.

Haven and her dad went out on this little lake and found a very cool beaver dam. Haven was so excited because she'd never seen one before.

My girl hanging out at the lake. Such a beautiful day we didn't want to leave.

BOX TOPS

WE NEED BOX TOPS!!!! Haven's school desperately needs a new playground!!!! Please help....


You can check this web site - HERE - for a list of products you will find the above logo on for the Box Tops....cut them out and send them our way! Please help.....she only has until April 25th to get them turned in!!!

Thank you for your donations!!!!

Thank you to all of our friends out there that donated to Johns Hopkins during the fundraiser. Haven won 4 passes to Six Flags and we couldn't have done it without you. We're looking forward to taking her during her spring break!



A note from Hopkins to all of those that joined their own mission to raise money:

Thank you for participating as an ambassador in this year’s Johns Hopkins Children’s Center Caring for Kids Campaign.

You reached out to your family, friends, coworkers, classmates, local corporations, and community organizations for donations—and on behalf of our young patients, families, and staff, we sincerely appreciate your efforts! We have raised over $5,300, and counting!

The Caring for Kids website will still continue to accept registrations and donations until we begin our 2012 campaign. Please continue to reach for your fundraising goal!

Each year we strive to raise funds that will allow us to sustain and develop programs and services for our patients and families when the need arises. Here, families in dire straits know they can count on us to care for their child no matter what. Thanks to the support of individuals like you, our wonderful doctors and medical staff are still able to keep the doors open to every child and family who walks through them, regardless of their ability to pay, while providing the world-class pediatric care for which we are renowned.

Your generosity is what makes Hopkins Children’s unique and a very special place for children to heal.