Bring on the Madness

Folks, it's 15 minutes till tip off of the Sweet Sixteen game. Syracuse is in the house and our family is ready. We've worn the appropriate gear all day, we drank Sunkist and orange Gatorade and we ate Syracuse pizza. Go Orange!!!

Kennedy Krieger - Year Two

And then there was March. Not sure what happened to most of February. We've had a busy and fun month. Growing and Growing. Well we'll start with a fun picture that brings a smile to my heart. If you remember Dirty Socks, you'll appreciate this one.

We had a baby shower for our friends and their sweet little A. She's about to undergo her 2nd heart surgery in a few weeks, so please keep her in your prayers.

And then it was Daddy's birthday. We had a fun family birthday party for him. Decorations and everything this year. For his cake we made him a delicious banana cream pie (Thank you TP!). Wasn't necessarily Gluten Casein Free so Jimmo had some cookies.

Jimmo is going to town on Daddy's present! Much more interested then he was at Christmas.

The crew with the birthday pie!

And yesterday was our annual trip to Kennedy Krieger Institute. Thanks to the D's for watching our princess. This institute is where our closest Fragile X Clinic is located. We visited them in March of 08, and this served as our baseline visit. So we completed the same testing and then sat with the panel of doctors like last year. Last Thursday we went up and completed the psychological evaluation (Bayley's for those of you in the field). This is always a tough test for Husband and I because we know Jimmo's abilities are better then he performs, but when he is asked to sit in adult chair at an adult desk and in a hot room this automatically equals poor results. But we just keep reminding ourselves that this is just a standardized test, which is needed, but we know him best.

Yesterday's testing included a speech therapist, who also completed the ADOS testing for Autism. This was about the same results as of Thursday. We stripped him down to his wife beater and took frequent brakes because of the small hot rooms. We then took a well needed lunch. Husband and I found a cup of coffee and then headed over to the pizza joint we went to last year. Mmmm very hard to find a good meatball hoagie and this one is quite good! Yes I said hoagie - not sub! We then met with the Psychiatrist to talk about behavior. We know that were very blessed in this area as Jimmo generally doesn't have any behavior issues beyond a typical developing toddler. We try to discipline him at "his" cognitive level, as we would any child. So far - so good. Next we met with the Neurologist who is the head doctor of this clinic. I might have mentioned last year that he's a unique doctor because he does research for Fragile X as well as clinically treating the patients. We talked a lot about his gross motor skills and he felt that Little man was progressing well. He explained that Fragile X kids tend to be very flexible and along with Jimmo's Hypotonia, this attributes to his delays. Either the top or bottom half of their bodies tend to be flexible and we happen to be the bottom. Hence why our child at 3 years old can still put both feet entirely back behind his head. So although his gait and walk is improving, it explains why it's such a struggle for him. We also talked about my family lineage. I've been working with Emory University and their Fragile X study to provide free testing to my mom's entire family. I'm tracking this so we can be aware of how this syndrome has affected our family and for future family members. The doctor was excited to see the results as this helps him with his research as well. And this gives me a chance to use my geek skills and make an org chart.

It was time for one last break as all the doctors met and discussed the different areas they tested and discussed with us. It was perfect timing because our little guy definitely needed a nap. We took a drive in the car as he slept for thirty minutes. The panel meeting was very helpful. We'll get a full written report in about a month that details everything. The short and skinny.....They felt that his current school program and therapy amount is about perfect and to conquer on. This is a big relief because I often toss and turn over what is enough. And they said that when comparing among other Fragile X children, Jimmo rates above average with behavior but still below average cognitively. This was good news in our eyes, because the behavior issues can be pretty severe with Fragile X. Jimmo is Jimmo and we love every little morsel no matter what rate he learns at...especially with those great kisses he gives.

We'll go back again in a year and they agreed to not complete the standardized testing. It has proven twice as not very successful so we'll try again when he's older. This also means only 1/2 day visit versus 2 days so that's a big relief. In the middle of this two day visit, I happened to have a woman's retreat. That worked out quite nice to have time with girlfriends and quiet time to reflect on everything I'm thankful for this year.

And one last thing.......TWO more days till Spring - my daffodils are peeping! Thanks for listening, reading, praying and loving us!