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.

Catch up time - November and December

Wow - where did November and December go. Apologies in advance for the long blog and photo dump...I'm sure you're not busy getting ready for Christmas or anything. We started early November with a quick trip to Disney with Princess. Jimmo is not quite ready to take on Disney, but we look forward to this adventure some day. Nana and Uncle Muscles watched Jimmo while we were gone and did very well taking him to school and caring for him. Here is a short photo album of our trip. (Click on the picture of Tigger to see the album)

Disney 2008

Thanksgiving came quickly. This holiday, like most, is one of our favorites. Our family has so much to be thankful for and we enjoy focusing a holiday on being thankful for every blessing we've been given. We have been hosting for over 5 years now and truly enjoy spending this time with family and friends. We had a great time with our friends the D's and missed our other friends the E's very much. Here are a few shots of the men partaking in the cooking traditions and the girls before bedtime. And of course my friend K and I did the Black Friday shopping experience the next morning. We decided to be reasonable and meet at 6AM. Lots of fun, oh and great deals.

And this brings us to December. First we started off with celebrating our little girls birthday. We're still in denial that she's actually 5. She wanted to have a Gingerbread party - and WOW was that a lot of sugar! Imagine five little girls making Gingerbread houses covered in every piece of candy imaginable. Both sets of Grandparents were down for the first time ever, which was quite exciting for her. And of course Uncle Muscles came, now that he is local. She had a wonderful time and is already making requests for next year. Hmmm who does she take after? (Click on the below picture to see all the pictures)

5th Birthday

Gran Gran and PaPa were down from New York for most of December. This was a fun treat to share our Christmas traditions with them. This past weekend we had both of husband's sisters and their families down to celebrate Christmas. It was a cousins dream - they played and played.

Lunch at Five Guys

Singing Happy Birthday Baby Jesus - all the cousins

A trip to Mount Vernon to see it at Christmas time

Jimmo had his school holiday party. Since I last wrote, two new children have joined his class. Both children are verbal, which is great for Jimmo to have the example. So now there are 5 children to 1 teacher and 2 aides. Still amazing ratios. He continues to love school. In the morning as soon as I say, "it's time to go to school", he goes right to the garage door with excitement. His smile is from ear to ear at the Kiss & Ride drop off area where the teachers greet him. Here are a few shots from his Christmas party.

Decorating cookies (gluten casein free of course) but Jimmo was more interested in eating them. This is one of his classmates and his speech therapist and her daughter.

Dad helping Jimmo make a shaker plate. Here they are stamping it for decoration Santa came for a quick visit
Working on a door hanger with Mom

And finally - the best part - party food!

So we've had a busy season but we're looking forward to Christmas Day. Jimmo is fighting a cold and fever right now, but we should hopefully, with a little prayer, be all better for Christmas!

May the blessings of Christmas remain in your heart all year long.

Merry Christmas!

It's the most wonderful time....of the year

Yes folks, as most of you know I'm a HUGE Halloween fan. So I'm a bit late on this posting but we're down with an ear infection and strep on the little man so this is how it goes :0) Tis the season as my pediatrician said to me today. But back to Halloween......We started off our morning with a wonderful Halloween treat - Candy Corn. God Bless the creators of this wonderful thing! Jimmo will have to wait a few years to enjoy this treat but he had some yummy waffles instead!

Miss Terrific Teacher invited Princess and I for the Harvest Party. I was tasked with bringing the supplies for GFCF rice krispie treats. Jimmo was a bit tired for the party but he managed to participate in helping assemble the treats together with the teacher. and then quickly went back to his own business of reading his book.
And finally it's off to trick or treating. Jimmo's costume has been set for awhile - he was going to be a monkey. However Princess must have changed her mind about 20 different times from August till October 1st. Hubby gave her a deadline to bring an end to this wishy washy nonsense. Most 4.5 year old girls are princesses/fairies or something of that nature. Not this girl - she wanted to be a skunk. Yes a stinky skunk. It mostly has to do with an obsession she has for tails. And she was very excited that both her and brother Jimmo would have tails. So here are a few shots of our zoo?? Pre and post make up. Jimmo was really not into the in and out of the wagon scenario. Perhaps next year we'll have to change up our strategy a bit.

Jimmo taking a ride in his Halloween carriage.

Long night - time for bed!

Continued Success at School

You might recall on Week 2 of school, I explained the communication system Jimmo is using at both school and home. PECS, Picture Exchange Communication System, has been working quite well for him and each week he has been successfully graduating to the next phase. Without going into too much detail with the phases, below is a video from this afternoon as Mrs. Terrific Teacher is working on some new trials with him. You can see the two other sweet boys in his classroom on the video and one of the two wonderful classroom aides. And so you're not confused with the voices you hear, one of little guys is using his talking device for his communication system which you'll hear in the background.

In this video, Little Man does two out of three successful trials trying to ask for his rice cake sandwich. I know that sounds so delicious doesn't it? But truly it's such a perfect lunch for him. The crunch of the rice cake satisfies his oral needs and is conveniently gluten free and the peanut butter is good protein. Jelly is always a bonus isn't it? Happy Friday Everyone!