Tuesday, May 31, 2011

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 ~~~~

Wednesday, May 25, 2011

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!!!

Tuesday, May 17, 2011

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!!!!!

Monday, May 16, 2011

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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Friday, May 6, 2011

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.