Friends With FOP

We're still dealing with swelling on Erin's right side of her back. She usually has a hard time getting comfortable when going to sleep and last night was a little more difficult than usual. The swelling has become worse and it has some black and blue markings. She has taken two doses of the steroid and has been taking the Aleve regularly. We've been able to crush the steroid and put it in peanut butter. This morning we tried chocolate syrup so that works just as good. We finally see (what we think ...

Melissa is one of our daycare parents and she has offered to look into possible fundraising options...even maybe organizing a non-profit in Erin's name.  A couple of ideas have been floating around about different fundraising events.  Melissa said she would love to hear from anyone who would be interested in helping out.  If we actually get a non-profit organized, we will need to have a formal structure in place such as board members.  If any of this interests you, you can leave a comment here or send me an email and I'll pass the info on to Melissa.  Thank you Melissa!!!

We received a wonderful inspirational card in the mail today from TVA.  Erin and the family has been placed on their prayer list.  Thank you Memaw (Grandma Retha) for the request! 

I talked to Dawn (genetic counselor) today. She said Dr. Kaplan sent her an email yesterday and that she would try to call him first thing tomorrow morning. Dr. Kaplan did mention that he wanted her genetic test results. Dawn called the lab in PA and they said the results will be ready on June 24th. We meet with Dawn on the 26th but hopefully we'll be notified of the results on the 24th. I don't think we'll new info tomorrow if Dawn talks to Dr. Kaplan. I have found a substitute to come in to run my daycare while ...

We had a very busy weekend with the boys' baseball end of season Jamboree on Saturday and then Father's Day today. Normally I would have left Erin at home for the Jamboree but it's hard to get out of the house with two kids in their baseball uniform. Erin loves baseball. So I decided to take her even though I knew it was going to be a long day for her.  Pictures of the Jamboree have been added to the "Photo Album" link. She did well most of the day. I brought her medication with me just ...

Erin has been taking large doses of Naproxen (Aleve) for several days now.  The new swelling had not subsided so the genetic counselor called in a prescription for Presnidone (steroid).  We have learned through Erin that neither medication tastes very good.  With the Naproxen, I am able to squirt a little at a time into her mouth.  Although she doesn't like it, she cooperates.  Cooperation went right out the door with Presnidone.  We finally had some success using a small tube on the end of the syringe and squirting a little in the back but off to the side of ...

Sue noticed last night that most of Erin's right side is swollen.  Erin's right shoulder is swollen the most... so much so that you can't see her actual shoulder-blade.  The swelling in her shoulder feels very firm, but is not red at all.  She has swelling on the right side of her tummy and also on the right of her genital area, but both of those areas feel much softer, as if they are just filled with fluid. We talked with the doctors, and they agree that she should have a steroid, which is the usual call when a FOP flare-up occurs.  This ...

We've added a new photo gallery that's all about Erin!  Click on the "Photo Album" link on the site or visit this link: Erin's Photo Album Oh, and I've scoured the Interwebs for FOP information, and found other FOP patients with websites, news coverage, and general info about the disease.  There's lots of great information, and I can confidently say that this page has the most in one place that I've seen.   We're your one-stop FOP-shop! Click on "FOP Web Links" on the right, or click the link below: FOP Interweb links

Alan and Erin went to a meeting with Northshore School District yesterday. Erin has been treated for physical therapy, speech therapy, and education through the Kindering Center which is a birth to three clinic. Since April, we've been working on transitioning her from Kindering into a private clinic but also see what services the school district could offer her. Erin had all her exit tests done in May and because of the test scores she did not qualify for district services. However the district told us that with a FOP diagnosis, everything changes. In August we will reconnect with NSD ...

Wow!  Thank you all for all the positive thoughts and prayers!  We really do have an amazing circle of support around us.  Our home phone has been ringing off the hook...it's hard to find a handset that is fully charged.  I have never seen my inbox so full of emails.  All the grandmothers and neighbors have started separate prayer circles....I am just so grateful.  We have not been all that religous but events like this make you think twice and hope that there is a higher power out there looking after your child.  I have questioned, "Why my little girl?"  ...