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

Weekend in Philadelphia

So I'm a little behind on my blog duties...so I'll play a little catch up and hopefully be consistent soon (HA!) I think the word "consistent" has left our vocabulary since Little Man was born!

Two weekends ago we went up to Philadelphia to spend time with Nana, Auntie D and Uncle Frankie. Then Saturday night we went over to Pappy and Rhonda's for a surprise 50th birthday party for Rhonda. Lots of fun! Although on the ride up, our little man has officially left his cocoon as the "quiet traveler" of the two. He use to love his carseat and be very content. Hmmm not so much on this trip. So mom and dad will have to devise some new "soothing tricks" before our next car ride that is for sure!

We visited a county fair and had loads of fun. We also learned that our princess has no fear of rides, like her mama! Little man enjoyed a few rides, but maybe next year he'll enjoy more.

Jimmo doesn't necessarily love this ride but doesn't hate it either I guess.

Mama and princess are in the 2nd car...by the end her hands were waving in the air like a roller coaster pro!

European bungee jumping - hysterical!

Nana and princess riding the copter, little man was too short for this ride...next year buddy!

Since we've been home, we've been immersed in the preschool diagnostics process for Child Find. I'll keep my bureaucratic system comments off-line for now....grrrrr. Jimmo's portion of the testing is finally complete and now we have our parent conference, the eligibility meeting and finally the IEP. I will be so relieved to have this completed and then ready to enjoy the summer!

One last comment, hubby and I are thinking and praying about putting Jimmo on the gluten free casein free diet (GFCF) for a few weeks this summer before he starts school. This is an entire family undertaking and no small task at that. We figured a 4 week trial period would be much easier in the summer when he is with us 24x7. We have heard a few families have tried this with their Fragile X boys and have seen improvement in attention, behavior and the autistic tendencies that tend to accompany Fragile X. We'll keep you posted.

Big hugs to everyone and happy summer!!!!!

And it's even PINK!

Isn't he just the best!

Breakfast in bed, chocolates from Georgia (she personally picked out the Whitman Sampler pack) and a PINK mixer! You might remember from What's a baker to do? the tragic loss in our household. Even though it rained all day, there were plenty of smiles in this house.

Hope all of you mom's had a wonderful day!

Quick Mother's Day shot after church in between the rain!

One Year Ago

Today is the anniversary of our diagnosis of Fragile X. I remember the feeling all too well when the news was told to us, and I'm amazed how God has worked in our lives and made this diagnosis be such a light in our lives. Little man has grown and improved so much over this year. We're walking (HUGE), have good eye contact, purposeful playing, attempting to communicate, climbing stairs, sleeping better and still gives the best hugs this side of the Mississippi.


We have so much to be thankful over this past year. Amazing family, friends and neighbors that have come by our side. Very supportive therapists that have a sincere interest in our son and truly love him. A daughter that loves her brother unconditionally and will always be there for him. An early diagnosis that enabled us to begin the most effective therapy at an early age. Amazing scientists that are working diligently on a cure for Fragile X. That is one amazing year!

The Dawn of Competitive Sports

Hubby has dreamed of his children playing soccer since he was a young lad. He could not wait for the princess to reach the age limit of 4. He was so eager he signed up to coordinate the soccer teams of age 4....interesting job to say the least. So two weekends ago, hubby and princess headed off to the local sports store to get her team jersey, shoes and shin guards. Princess had fun but wondered why they didn't come in pink.

This past Saturday was the first game. I use "game" very loosely. Basically 25 four year olds dribbling the ball around cones and then practicing goals...quite a scene. They all patiently waited for snacks, which apparently is the highlight of soccer Saturdays for these kids....we're learning! Here are a few pics of our future Mia! Little man had a blast as he had rein over the entire flat field for the full 45 minutes. Walking video - still to come - we promise!