Friends With FOP

I guess a really good night's sleep did Erin good.  She was ready to go swimming from the moment she woke up.  We made it to the waterpark about lunch time and she was totally into the wave pool.  I had to sit in the shallow end and let her sit in my lap.  Today I sat down next to some water spouts coming from the ground.  She loved them!  Before I knew it, she was trying to befriend a little boy who too was a bit intimidated by the waves.  After dragging Alan out of bed, I took the boys ...

We're on day four on our vacation.  I managed to successfully drag Alan camping.  We did three nights at a KOA in Astoria, OR.  We stayed in one of the Kamping Kabins.  Not bad...just horrible mattresses.  It was hard to get a good night's sleep.  This trip is for the family but mainly for the boys.  They got to sleep in rustic bunk beds, swim, collect shells, roast marshmallows....  Erin was done with camping by Monday night.  All I heard was, "Mommy, let's get outta here."  "I want to go home."  "I go sit in the car."  Now we're at the ...

Erin had an appointment today with an occupational therapist at Children's about a helmet.  Ugh...I am so disgusted with the choices.  They were the same helmets I've seen in other medical cataloges.  I was really hoping to see something new.  It was obvious that I wasn't happy with the selection.  The OT said I could try going to the department store and buying a bike helmet.  Erin deserves to have protective head gear and if insurance was going to cover a helmet, I wasn't about to leave without ordering one. On IFOPA.org there is a page that discusses what type of daily ...

Earlier today I was scratching Erin's back when I felt a couple new lumps that I had not recognized before.  Sure enough she has begun to swell on her back but this time on her left side.  I hate what FOP is doing to her body.  Right now she's happy and wanting to play.  Probably by the end of tomorrow she'll be miserable again and staying on the couch.  Erin will also be wanting to sleep with us at night again. Last week was just the pits.  We got hit from every angle (or so it felt like it).  There was a ...

AUGUST 8TH & 9TH WOODINVILLE (location to be announced next week)   HOW CAN YOU HELP??? Clean out a closet and donate your stuff!!! We can pick-up and store anything you have!! Volunteer your time to help our sale! Come shop and find some "hidden" treasures!   Contact Melissa Sprague: melissa2000@comcast.net or Suzanne McCloskey: suzanne.mccloskey@yahoo.com FRIENDS OF ERIN KATE is a group of family and friends [future non-profit 501(c)(3)] helping to raise awareness of FOP and the funds needed for research and assistance for Erin and her family.�

Past summers I had been able to take the daycare kids on field trips (summer concerts, playgrounds, wading pools, and spray pools).  This year I knew we wouldn't be able to b/c of the two new infants that enrolled in the daycare.  Just so happens that I had no infants on Friday.  All I had were Jaiden and Ayanna (siblings) from the daycare and Brennan, Larkin, and Erin.  We were going to a spray pool but then I found out I would be able to get tickets at Wild Waves for $10 a piece (that's a steal compared to the $28 ...

We got a surprise call on Thursday from the PT/OT clinic.  A spot became available in the aquatic-therapy class.  Yea!!!  Alan took Erin to her first visit that same afternoon.  Erin has been assigned to Lisa again.  Lisa knows Erin's medical history and was the one who recommended that Erin take the class.  Lisa recommend that wait until we had a diagnosis before starting any treatment to make sure we were doing the right thing.  Alan said that Erin was a bit apprehensive at first.  Once Lisa got her in the water Erin realized that it was play time.  They mainly played with toys ...

TVA has some of the most compassionate employees working for them.  We received another lovely card from a co-worker of Grandma Retha.  Thank you, Teresa.  Your words and card mean a lot to our family.  Thank you for thinking of Erin.

Now that the "shock and awe" aspect of Erin's diagnosis is starting to fade I have had more time to get some of the administrative things done.  I registered Erin with MedicAlert yesterday.  Thank goodness another FOP mother gave MedicAlert permission to use her son's information b/c I would not have thought of all the details like she did.  Now that if Erin has a medical emergency and Alan and I are not available, MedicAlert will have her information to pass on.  We put Dr. Kaplan and her pediatrician down as her physicians to contact.  I highly recommend MedicAlert (www.medicalert.org).  ...

We had a nice long weekend.  Alan and I hosted our neighborhood's annual 4th of July BBQ.  Neighbors started to gather around 4PM and by 11PM our street was covered with fire works and fire cracker debris.  Erin held her own the entire evening.  She found all sorts of goodies to get into.  From whipped cream and strawberries to a big basket of Dum Dums.  The next best thing to going to Ocean Shores, WA for the fourth is staying home and celebrating with neighbors.  Sunday we spent the day with Sarah Steele and her mother Marilyn.  Sarah was diagnosed when ...