Competitive Egg Rolls

Each year we participate in our communities annual egg roll. It literally is over within 20 seconds but for some reason we go back each year. Princess lined up in the category of 4-6 year old. Husband and her discussed strategy the whole way over and rehearsed again while standing on the starting line.

Waiting patiently for the start

It's so competitive that you would think a gunshot would kick off the race but instead a woman just yells "go". And about 50 kids go running into a small field to hopefully retrieve at least one egg.

Here we are about to pass the little boy we stood in line with - go Princess go!

Husbands strategy worked as she collected about 5 eggs with random melted candies that have peanuts in them. Oh the joys! But she did better then last year and felt good about a successful egg hunt. My heart always weeps for the little one's who didn't hear the word "go" or got a little shy and decided to wait till the big kids started running. Tears and egg rolls don't mix. Little man enjoyed running around in a large open field. He was testing us to see how far he could get. Afterwards we sat down to look at our eggs and Jimmo enjoyed his bucket.

No eggs, no problem!

But speaking of eggs, he might not have gotten any at the Easter Egg Roll, but he certainly got one last night - a goose egg that is! Happy Easter - just in time for pictures!

I had literally just gotten off the phone with Aunt B and I heard a thump. It wasn't an alarming sound of a thump. More the kind that you freeze and listen to see if there is going to be a cry or not. There was definitely a cry, a very sad cry. In the hall sat little man and it appeared that he walked right into the door. Door meet Jimmo, Jimmo meet door. I had heard about these goose eggs before but have never seen one in action. Within seconds I watched it grow on his forehead. I was panicked it wasn't going to stop growing but it finally did. Attempting ice on his head was like catching a slimy frog in a pond, but I did my best. One day down of spring break and we already have a battle wound - yikes!

Cherry Blossoms Are Here

As I've shared in earlier posts, since Jimmo is in school and Princess is still home with me for this last year, we schedule some fun time together on Fridays. We call it - Field Trip Friday. So with the cherry blossoms in bloom, we decided to take advantage of this beautiful site. I was delightfully surprised at her interest in them . They are truly breathtaking how they drape over the paths and almost into the Tidal Basin. It was a bit foggy, cold and damp, but here is a shot where you can kind of see how they cascade into the water.

We did a cherry blossom tour with a National Park Tour Ranger. I'm not sure about all of you, but I always thought the trees were given to us as a peace offering after WWII. With that said, I've definitely revealed how much I did not pay attention in my high school history classes. So I thought I would give a quick background on the Cherry Blossoms for those of you who wrote notes to your friends during history class like I did.

• 1909 - A visiting Japanese dignitary offered a donation of 2,000 trees to First Lady Taft who was working on a beautification program in the District. The initial trees given were actually infested with disease and needed to be burned. The same dignitary offered another 3,020 trees to replace them a few years later.


• 1935 - The cherry trees were thriving and the First Cherry Blossom Festival was held.


• 1938 - A group of women chained themselves to the cherry trees in an effort to save them during the construction of the Thomas Jefferson Memorial.


• 1952 - The parent stock of D.C.'s first cherry trees were destroyed during WWII. United States National Park services sent budwood from descendants of US trees back to Tokyo in hopes of restoring their original site. (WWII was from 1939 - 1945)


• 1954 - The Japanese ambassador presented the US with a 300 year old Japanese Lantern. This is on the cherry blossom walk at the Tidal Basin.


• 1965 - Japanese Government sent another 3,800 trees to Lady Bird Johnson for planting.


• 1982 - The US sent 800 cuttings from the Tidal Basin trees to Japan to replace trees that perished in a flood.


• 1999 - 50 trees are propagated from the 1400+ old tree growing in the Itasho Neo village in Japan as a gift to the US.

So rather than a peace offering it's actually a gift giving cycle with Japan and the US that continues even today. The trees are considered a symbol of friendship between the two countries.

We also learned a lot about the maturation of these trees. This was what Princess was interested in the most. It was quite fascinating to see and hear the process. This is Princess in a Magnolia tree (saucer Magnolia to be exact). You're obviously not allowed to sit in the Cherry Blossom trees.

And then we also went to the Thomas Jefferson Memorial. Her first comment was - "That's a very big man, Momma".

So after a few hours we were very cold and hungry. So much for the picnic lunch I packed for the sunny 68 degrees weather we were supposed to have. So I offered her some hot chocolate at Starbucks and she said she wanted a Cheeseburger. Interesting choice....so off to Johnny Rockets we went. A cheeseburger and milkshake can always make you warm inside!

So if anyone wants to visit next year for the Cherry Blossom festival - we are well equipped to give a tour! More on Jimmo soon.

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!

Let the Race Begin

Last Sunday we completed our first (of hopefully many) Family Race. Momma loves to run and has been coaxing the family. We found a race called the Chocolate Mile. Who can't run a mile for chocolate? Well it was a hit with the family and we're already searching for our next quest - a 5K.

Quickly Valentine's weekend ascended on us. We had some friends over on Friday to make special presents for Daddy. He loved them and can't wait to display his new frame at work. 3 out of 4 of us are down with colds, so we had to stay low for the weekend. We got a little stir crazy on Saturday so we decided to pack some tissues and head over to a Smithsonian we've been wanting to visit near Dulles - National Air and Space Museum. Princess declared this week she wants to be an astronaut when she grows up.

And we think Jimmo's favorite part was the clear open space to run. However he also had a bit of fascination with the Enterprise space shuttle.
Princess got a little tired of looking at aircraft after about an hour, but a milkshake at McDonald's sure made this outing top notch.

Winter Activities.....what to do

Our school district had teacher service days Monday and Tuesday so we've (the kids and I) had a 4 day weekend. Because we were busy in December, we've kind of been gun shy on making any plans in January so we've been staying low. But we did manage to do a few fun things that I thought a quick blog post with pics was worthy of.

For Field Trip Friday I took Princess ice skating for the first time. She's been asking since we watched it on TV a few months ago. We met some friends and had a blast. She repeated the same comment over and over the first time around the rink - "I didn't know it was going to be so slippery". I laughed how innocent their minds are and how easy things look.

pre-game

Our little Dorothy Hamilton (does that date me?)

The girls wanted to go a round by themselves (glued to the wall basically). This gave the moms a few laps on the rink by ourselves. Felt like I was in 7th grade again!

On Saturday we had a bit (or I had a bit) of "get me out of the house syndrome", so we decided to bundle up the kids and walk up to the library. Interesting with the wind and the wagon but we accomplished what we went for - books! Here are the kiddos as we wheeled back in the driveway - can you tell if someone is faking it? Who knew the library could be so exhausting for preschoolers.



And then today, our MOPS group had a fun indoor activity scheduled at a local Bounce House. Conveniently Jimmo was off from school. As you might remember from his birthday video, he loves bounces of any type. They're faces were priceless when we walked in. The desk attendant looked at me and said - this is why I love my job. It was basically a huge warehouse filled with about 10 bounce houses/slides/basketball hoops - you name it. Some of them were quite high. I didn't get to take many pictures since I was running after Jimmo most of the time, but here are a few. (thanks Renee) Hmmmm I'm seeing a future birthday party for our little tigger boy.

Dirty Socks

I remember it was about a year ago when I was folding laundry and I came across one of Jimmo's socks. It was cute and small, as you would imagine most 2 year old boy socks, but it was missing something. When the radiologist told us it was a boy, I began to prepare myself. Instead of doll houses and tea parties, this would mean cars and trucks. I could envision holes in the knees of the jeans and socks that would never be white and have holes in the toes.

As I was sitting there folding laundry I noticed my 2 year old boys socks were still very stark white, not worn and definitely no holes in the toes. This was a hard time for husband and I as we anxiously waited for Jimmo to walk, to take that first step that we have been waiting for so long. Well as you all remember, he did finally walk at the end of that March. The other night he climbed up on the couch with me and I looked down and teared up. I'm happy to report - that his socks are no longer stark white, but indeed we have DIRTY SOCKS - Praise the Lord!

This brings me to our next blog. As the New Year is upon us (well kind of), we wanted to embrace and gloat on our guys achievements. Over the past 2-3 weeks, we've seen some great things happening with Jimmo. Since he's just over three, generally that puts a Fragile X child at the cognitive level of an 18 month old. A good rule of thumb for Fragile X boys is that generally he'll develop at the cognitive level of 1/2 his age. Where this plateau's - we'll see what God has in store for us. But with that said, we're excited about signs of development the past few weeks and the advancements he made. Between a crazy Christmas with lots of company and the sickies, he still managed to pull ahead. So here is a short list of our accomplishments! As princess says - Woo Hoo!

• If Jimmo wants to watch Pooh, he sits on the couch and patiently waits. Eventually this patience turns into yelling, but he definitely tries first to be patient.


• He's carrying toys around with him and even figuring out how to get them to different levels of the house. Like throwing a truck down the stairs before he comes down on his bottom. This is one of our favorites - ha!


• He's sleeping SOOOOO much better! He's gradually letting go of his afternoon nap and now getting up anywhere from 6:30-7:30AM. This is huge for everyone! Half of us are convinced that this is because of the gluten diet, the other half - jury is still out.


• He's greeting Daddy at the door each night. We have a silly routine that he just loves. If you're lucky you'll get that on video some day. But he laughs hysterically and then bends his head in for a kiss.


• But speaking of kisses, we can get them on demand now, as long as he's in the mood. Now we're working on keeping the tongue in the mouth ;0)


• Since late October, his social skills have greatly improved. He now notices his surroundings so much better, studies faces and clearly notices when new people enter and leave the room.


• He has a good handful of receptive commands. Give Momma a Kiss, Go to School, Go to the car, Go outside, Take a bath, Brush your teeth, Give it to Momma, Sit down, Want some juice, want a snack.


• At school, he now takes his picture from the entrance of the room and brings it to his cubby(locker).


• This past week at school he voluntarily went to "centers" of his choice and sits and waits for Miss Terrific Teacher and her aides to come join him. They even tested what he would do if they didn't come and he got up and pulled their hand to the center.
  
• His teeth brushing routine has improved greatly. We started this in June and it took about 4 months to get it down and then another 2 months to hand over the toothbrush without crying. He loves his toothbrush. Watch the video below.


• And last but not least - the most exciting news. We have our FIRST WORD friends! Drumroll..........Juice. It sounds more like "uice" but we're officially calling it our first word. There are a few other words that are still under negotiation if we can "officially" call them words - stay tuned. The average child with Fragile X has a few words between 3 and 5, so we're thrilled to have one at 3 and plan to work hard these next few years!

Amazing stuff - we're very excited to see what's in store for us this year.

Watch our goofy teeth brushing routine below. You might want to lie on your side when you watch this one (wink wink). My camera man is underpaid.