Top 5 Greatest Sentences

Last Friday we received an e-mail from our Kennedy Krieger Fragile X specialist that he would like to have a call set up regarding Princess’s test results. This e-mail made our stomach turn. It brought back the memory of Jimmo’s diagnosis. In April of 2007, we had gotten a call from our extremely overbooked Neurologist to see him the very next morning at 7AM to discuss test results. We knew there was not a chance that he was fitting us in so quickly to say – your boy is fine and it will all work out. So that same memory flashed before us. We spent the weekend preparing ourselves and talking it thru.


There were two possible outcomes:

1. She’s a carrier like her momma – and hopefully in 20 plus years when she goes to have children, they’ll be better ways to study her eggs versus embryos to determine which have Fragile X and which do not.


2. She has the full mutation. Because girls have 2 X chromosome’s, the other X provides the missing protein. About 50% of girls with the full mutation have cognitive disabilities and the remaining usually have learning disabilities.

Needless to say it was a long weekend and Tuesday at 3:30PM couldn’t come any sooner. And of course Tuesday at 3:30 I had to be in route with the kids to speech therapy and hubby was on Capitol Hill for the day – interesting timing for both of us. So as we’re sitting in traffic on the inner loop of the beltway, the doctor says to Hubby and I who were conferenced in together, so now that we know her results are normal, we can look at the full picture of Fragile X and your immediate family. Both of us said simultaneously – “Did you say normal?” Apparently the lab was supposed to send us a copy a few weeks ago and the doctor thought we had a copy and had a different agenda for this call. These words had to be in the Top 5 greatest sentences that Hubby and I’ve heard in our life. Right up there with – Will you marry me? I do...and...I do! I’m pregnant! I’m pregnant Again!

Princess is completely free of Fragile X and will not pass this on to her children. At least in our portion of the family line – Fragile X stops here! Thank you for all your continued prayer for our family.

Can someone please tell me how we went from here.......

to there.....so fast? Breakin momma's heart this girl.

Our first IEP

Yesterday hubby and I kicked off a new phase of our journey with Jimmo - our first IEP. For those of you who are unfamiliar, IEP stands for Individualized Education Plan. Back in 2004 when congress passed the IDEA Act - Individuals with Disabilities Education Act, it was required in the public school system that an annual IEP must be created to describe a student's special learning needs and the special education services to be provided to meet those needs. The IEP team consists of parents, the students teachers, the principal and a representative of the school system.

All of Jimmo's private therapists were amazingly helpful with providing feedback to the goals and objectives of the draft copy and after several hours of preparation, we were ready to advocate for Jimmo's needs. The team at the meeting was quite pleasant and willing to work with us. Jimmo will start this fall in the special needs preschool. Specifically in a classroom which our county refers to as PAC - Preschool Autism Classes. And just for clarification, Fragile X is not Autism, but has autism like tendencies, so he'll fit right in with these kiddos. We advocated for this classroom because of the 5 teachers to 6 student ratio and the heavy emphasis on routine. He will also receive 3 related services during his time at school - Physical Therapy, Occupational Therapy and Speech and Language Therapy. And we'll continue to do all three privately after school as well. Overall the meeting went well. We do need to reconvene because the physical therapist was not able to make it and we had a few questions about her goals, plus we are requesting more speech and language hours. We're hoping to have this wrapped up by this coming week.

We're both very glad to have the bulk of this process behind us. Hubby and I chuckled on the way in to the meeting - 1 IEP down, 15 more to go! We couldn't be more happy with our county. Fairfax is the 13th largest school system in the nation and has an outstanding program for special education services. We're so thankful. Looking back 8 years ago when we bought a home in this county, we really had no clue how important this decision was. Certainly God had his hand on our decision.

And finally we received some great news. Originally Jimmo would attend a school down the street, that is not our "assigned" elementary school. Special needs preschools are not at every elementary school due to demand and cost. So this meant that Little Man and Princess would be at separate schools until Little Man reached Kindergarten. Well our "assigned" elementary school is starting a PAC class so now Little Man will be in the same school all the way thru 6th grade and will be with Princess as well.

OK enough acronyms and Fairfax County talk for one night - big hugs to all!
Happy Early Father's Day!

Oh tree how we'll miss thee!

A pretty violent storm ripped thru our state yesterday. There were many places where a tornado touched down - yikes. We just had some very high winds. But high enough to knock down one of our 30 foot oak trees! Such a sad sight. This was one of the trees that held hubbies hammock. It also added a great deal of privacy to the new library up on the hill. But as hubby pointed out as he stood on the roof of our garage with his might chainsaw (wish I took a picture of that!) - perhaps this gives us another potential spot for our swing set!

Here are a few pics of our lovely tree...oh how we'll miss your shade, privacy and the endless nights in the hammock you provided!

And we dropped the camera while taking these..so expect a few less pictures in the near future