Friends With FOP

Oh how I love Halloween!  I always have the best intentions to really go all out on the house decorations.  Unfortunately like the past Halloweens, we carved some pumpkins and then put out a self-serve candy bucket.  Our children became Indiana Jones, Princess Liana from Barbie's Diamond Castle (just in case someone didn't know), and some zombie-like creature.  Erin REALLY got into Halloween this time around.  She did really good.  All the homes here have agrigate steps leading to the front door.  Some houses like us have three steps but then there were other homes with 10 steps.  I was supposed to take video of ...

When we were back east, I was told to post something everyday.  Even if it was just to say, "All is well!"  Okay, so I let a few days go by, but I THINK we are all at the end of this round of colds.  As one takes a turn for the better, another falls prey.  Erin has been cranky all week.  With no other symptom I have been suspicious she was on the verge of a new swelling.  She's been crawling into bed with us in the middle of the night.  When she comes home from school she quickly becomes agitated and only wants ...

I have been meaning to provide an update but since we got back everyone (except Larkin) has either been sick or has had a tooth problem (me).  Alan finally went to the doctor today.  His cold set into his chest and now he knows first hand what I go through twice a year with bronchitis.  Lovely stuff!  On Monday I started feeling a dull ache in the upper right side of my mouth.  By yesterday I was popping Motrin as often as I could.  The dentist squeezed me in yesterday and surprise...I need a root canal.  Yea!  I think this ...

Karen from Canada wrote me and asked a few questions.  They were good questions so I am posting them here.    1. I know you have been treating Erin with Naproxen.  Did Dr. K have any comments about doing so?  Positive comments?  Negative?  Neutral?  I am curious because I tried to find a discussion of Naproxen specifically in the Treatment Guidelines, but couldn't find it (maybe it's discussed under a different name??).   He had us fill out a questionnaire when we first arrived.  On the form, it asked which medications Erin was using.  I didn’t recognize any of the medications and none ...

Our visit with Dr. Kaplan was simply amazing.  Our day started with each of us donating three vials of blood for FOP research.  Brennan took it the worst.  Alan went in to help Brennan but Brennan was inconsolable.  Dr. Kaplan's assistant waved me in to help out.  I had to give him a big bear hug and restrain his feet with my legs.  After it was over Brennan was talking like it wasn't a big deal.  Larkin screamed as well but handled it much better than Brennan.  Of course Erin was the best out of all three.  Poor thing is ...

Our trip is coming to an end...finally.  Our itnerary was full once we left Nashville.  We are coming home with hope for Erin's prognosis.  I'll blog more about our appointment with Dr. Kaplan once we get settled.  There are so many little details and I don't want to give false info.  From Philadelphia we headed north to Newton, NJ where we spent a beautiful weekend with my cousins.  I had not seen some of them in over ten years.  From Newton, NJ we headed south to Williamsburg, VA for a little R&R.  My mother-in-law has a time share and we had three days ...

Unfortunately I don't have time to sit down and blog about our visit with Dr. Kaplan.  However I wanted to post a few pictures and let everyone know that I will write about the visit in more detail.  I will say one thing though, Dr. Kaplan is wonderful! We have a busy weekend with family but tonight I will be able to write once everyone climbs into bed.

We arrived in Philadelphia around rush hour today.  I was amazed that Mapquest actually led us to the front door of the Ronald McDonald House.  Alan had called PRMH earlier in the day to verify that we needed a room for the night.  The house had no vacancies as expected but they put us up at the Sheraton which is two city blocks away.  Even though we didn't stay at the house we were able to eat dinner there and let the kids play.  The house is amazing.  It was built in the 1870s for a lawyer.  All the tile ...

The kids enjoyed last night at the hotel.  We went swimming and sat in the hot tub for a while.  I let the boys jump and splash out all their energy, or at least I thought I did.  None of the kids wanted to go to bed.  It was 2AM local time before I got to bed and Alan didn't fall asleep until 4AM.  Our internal clocks were thrown off when we entered EST.  We were able to handle CST but somehow that one little hour we lost in EST was the killer.  Another night of little sleep and as ...

We are now embarking on the second leg of our trip.  I've been getting very little sleep at night.  I think Alan is lacking sleep too.  My sleep at night feels more like naps.  Alan, Erin, and I have been sharing a king size inflatable mattress.  I am either woken up from by butt hitting the floor because the bed deflated or from a leaky diaper (and the diaper is not mine).  Eeww...I know.  At least starting tonight we'll be in a regular bed.  I do what I can to protect myself from the diaper issue. I finally went through over a ...