Cliff notes version of March...July 2010

I'll try and make the last 5 months as brief as possible - ha.

Our Spring Break this year was all about Grandparents. We got to see all of them within 9 days. We kicked it off with Gran Gran and Papa visiting us on their way back from their snowbird winter in southern Alabama. We took them to the National Kite Festival down on the National Mall. If you haven't been, we highly recommend it.

A ride on the carousal first and then we started prepping for our flight.

Jimmo did enjoy his trip to the mall but noticing the small things flying around in the sky wasn't nearly as exciting as his Miss Spider book as you can see in the above picture.

Then we went to visit Pappy at Stone Harbor, NJ. We had a great time catching up and Jimmo especially loved his favorite place (the beach). After he got the lay of the land, he walked around like he owned the joint.

A cool but pleasant afternoon on the beach - a sensory dream for our son

And our favorite animal at the Cape May Zoo - the Zebras

And last but not least, Nana came to spend Easter with us. We attempted to see the Cherry Blossoms again but it was insanely crowded so we took the "cliff notes" tour. It's kind of a theme with our life ;0) Here is a drive by picture. Literally Nana and Princess got out of the car took the picture while I moved ahead about 20 inches in traffic. And you can't even see the Cherry Blossoms....go figure.

Easter morning was lovely. It was very crowded at service but the kids did well. It was a beautiful celebration and always a reminder of the amazing gift that God gave us - his one and only son. It was great to have Nana and Uncle Muscles with us for Easter.

Nana and the little people

You can see that Jimmo was really into this picture taking thing. As we're standing on a hill, the grass is wet and your heals are sinking into the ground....you ask yourself.....why are we doing this?

Hunting for eggs and now for the best part - what's inside?

We went over to our friends for Easter for a big potluck. Just like the old days - LL! We always attempt these couch pictures and this was the best one I could get. This is of course post egg hunt and dinner.....the little one's are toast at this point.

Later in April we had some dear friends stop and visit us on their way to Myrtle Beach. It's been too many years since we've seen them and hopefully it won't be that long again. The girls just had a great time playing. As you've seen in many previous blogs, we're really into talent shows. Aunt B....I'm sure you're so glad to see those costumes being put to use!

I don't think we've mentioned much about potty training lately. Well that might be because there is not much to mention. We're just chugging along very very slowly. We're still on a schedule with training and we take data each and every day. We knew that cognitively he was not ready, but he showed physical signs of being ready...so that meant it was going to be a long road. As his teacher always says - it takes a thousand trials. We'll get there...someday. Here is what he thinks about his time on the potty lately....poor little guy.

So now it's May....in case you're wondering. During the school year, the kindergarten class has been working on memorizing all the patriotic songs along with the songs for each branch of the service. They put on a Memorial Day Sing Along and it was quite impressive. Here is princess and some of her classmates pre-show.

She was asked to announce one of the songs. She's use to memorizing verses so she knew her line very well, but when you stand in front of over100 parents with cameras flashing and video cameras...it's a little scary. She did great! (Don't forget to pause the music below so you can hear it)

And then it was June. We met some dear friends..we'll call them the "Wiplets" for security reasons ;0) They have triplets that are almost the same age as Princess so it's a guaranteed good time. We met in Lancaster to conquer Dutch Wonderland. Since Jimmo has never been to an amusement park, we thought this was a perfect place to see how he would do. And he did fairly well. He loved the rides, but couldn't understand the concept of waiting in line to get on the ride. It was the perfect low key park for him. I rode the train with him four times in a row in the late afternoon when the lines went down. It was a good test for him and us. We stayed at a surprisingly great place for kids and had a blast.

All the kiddos on the hotel playground. Hopefully the "Wiplets" have a better version of this picture.

The boys were just so sweet with Jimmo - good buds.

And the silly girls on the top bunk giving their mothers heart attacks.

Out to dinner after a long day at the park.

In June we also had Husband's class reunion in New York and a wonderful getaway with just the two of us, thanks to our dear friends who watched the kids for us. Our last day of school wasn't until the end of June because of our snowstorms this past winter. We don't take last day of school celebrations lightly around here! And off to the pool we went.

You might have seen these on Facebook. It's amazing how they've grown in just a year.

And then in July we took off for a 12 day adventure. First we had my "10" year high school reunion (he, he). Auntie D watched the kiddos for us. Husband then left for a business trip and I took the kids up to New York to visit with Gran Gran, Papa and all the cousins that also came in to visit. It was a cousin extravaganza...since they haven't seen each other since Christmas.

Summer time + Cousins = S'mores

Triple decker - you go girl!

These two share the gift of gab!

Jimmo was hanging out inside with Gran Gran eating graham crackers

Big cousins played mini-golf

Gran Gran and Papa graciously watched our children for 5 days and 4 nights (WOW) so we could attend the Fragile X Conference in Detroit, Michigan. Yes folks - Detroit. The kids did wonderful.....so says Gran Gran! I don't think she would ever tell us different. Jimmo is now off the GFCF diet, so things are a little easier for travel. Besides some eczema returning, he's doing wonderful.

The conference was absolutely amazing. Between Husband and myself, we attended over 30 breakout sessions on topics that ranged from toilet training to augmentative communication devices to the hopes of future medications. This conference is only offered every other year and they offer 5 days with the top experts in the world of Fragile X including scientists, doctors, therapists, teachers, psychologists etc. It's a priceless opportunity and we learned a tremendous amount. My "To Do" list is about a mile long, but it's all good....all good. We also participated in an auction and won the opportunity of having one of the top Fragile X Neurologists come to our house and school for a full evaluation. We were stunned and elated that we won. We're hoping for an October date for her visit. To have a Fragile X expert in your home watching how your son goes thru his day and to evaluate his school day is an absolutely priceless blessing!

On a not so good note, my Grandma passed away during this trip. The funeral and viewing was right in the middle of the conference, so I sadly could not attend. It was definitely interesting thinking about her during the conference and this "gene" in our family and how it's been passed from generation to generation....silently....until it was identified with our sweet Jimmo. I'll miss her greatly and I celebrate her wonderful life - a loving husband, 8 beautiful children, 16 grandchildren and 11 great grandchildren.

I hope you all are enjoying your summer. One month of summer left to squeeze in as many pool days as possible, VBS, a few more s'mores, hopefully a trip to the beach and maybe a water park. Oh and maybe another backyard camping night!

Bring on the Madness

Birthdays and Falls

We celebrated another birthday in our house this past week....it was hubby's turn. I planned a great surprise for him....and it actually worked! Since it's March Madness season, I noticed the last Syracuse game was this past Saturday. I called/FB'd his two former roommates who we haven't seen together since right after our wedding. We spent a night reminiscing with them and honestly felt like it was 10 years ago and we were 23. (ok so maybe a little older)

Oh and those little people....well Auntie D was sweet enough to come down and watch over them. They had a great time playing and so did Mom and Dad. Here is a picture of our evening with the roommates and the significant others....thanks guys for the great memories.

We stayed at this swanky new hotel. When we checked in, they asked if we would like a pet goldfish for the evening. Princess is still upset that I didn't bring him home.

As for the fall - you guessed it - Jimmo. I know you're not surprised. Last week he was running from the kitchen to the playroom and slammed into a door. A goose egg grew within seconds. So that was healing nicely but he needed to add a little more "texture" to his pretty face.

We've been working on transitioning/tantrums lately. It's tough for a little guy who can't speak, to tell you he doesn't want to go inside on this beautiful spring-like day. So what does he do, throw his body back in protest of course. Well this time he hit the pavement....face first. So here is our sweet boy after two injuries. I kept him home from school on Monday to let his lip heal a little more and for the swelling to go down. Luckily Miss Terrific Teacher understands this tantrum issue we're dealing with but others might have contemplated calling Child Services. But hey - at least we didn't have to go the ER again. Our fearless neighbor who is also our Pediatric nurse came to our rescue AGAIN!!! It's healing very well and already has a nice size scab - lovely! Oh and picture day is tomorrow - SWEET!

And then there was winter

Wow that had to be a record for how long it's been. I'll try and give you the cliff notes version of the last 3 months.

Princess turned 6 years old!

We have a tradition for her birthday (long story - not part of the cliff notes version) but we go to Silver Diner for her birthday meal. Before dinner we went to the mall to get our pictures with Santa. Little man was not having his best night and had an accident on Santa's lap. Yes - that's what I said. Dad took him into the bathroom and I guess decided to not deal with the mess. Jimmo came out in his diaper and sneakers and the remainders of the outfit was in the Macy's trashcan. (Potty training is just going super - can you tell?) Princess (and maybe mom too) was a little upset that we weren't going to Silver Diner so we regrouped - bought new pants and socks and off we were to Silver Diner. Really all he needed was a nap that he refused to take prior to our trip.....but he took it during dinner instead!


But back to the birthday......no longer can we hold one hand up and tell people how old we are - it's a two hand job now and she's thrilled! She's been very excited to turn six and wanted to have a painting pottery animal theme party with an emphasis on puppies! (Can I get an easy theme - just one year?) I don't think a day goes by lately without her asking for a dog. Hmmmm.

And a puppy cake....

And these are the "pupcakes" she brought into school.

And then Christmas came right around the corner. We went to Connecticut for a pre-Christmas with Hubby's family. We missed the big storm at home, but had a great time. We took a hayride on a huge Christmas tree farm and chopped down their Christmas tree. Lots of cousin time and fun fun fun.

At the tree farm....our photo is missing one cousin - she had a cold.

Cousin Moops made a sweet little owl for Princess

And this is one of our cousin talent shows.....always entertaining to say the least!

Chinese singing cheerleaders?

We stopped on the way back to see my Gran and Pap. They have moved into a home in central Pennsylvania. Always lots of laughs and great to see them!

We had a lovely Christmas at home this year. We had our neighbors over for our third annual Christmas Eve open house. Instead of torturing our son at a crowded church, we decided to do our own devotion at home this year. It was just lovely and we plan to continue this tradition. Christmas morning brought lots of smiles. Lots from Mom and Dad as we were thrilled of Jimmo's participation this year. He sat with us for his entire stocking and even made frequent visits back to the Christmas tree as he went from us to his playroom.

He LOVED his train table and we love EBay

And princess was thrilled with Julie!

And a surprise visit from.....the big guy.

Hubby took vacation time the week in between Christmas and New Year's. We did a little bit of a "train / tree tour" around our nation's Capitol.

National Harbor Christmas tree at the Gaylord Hotel

This one should be obvious.

Close up of the family at the White House Christmas Tree

Union Station Norwegian Christmas Train

Lunch with a view of the train - very cool

Over Christmas break I played around with teaching Princess how to play the recorder. She decided she wanted to do it for show-n-tell so here is a little clip of her practicing...

And then the snow came...and came....and came... and came. It was like Ground Hogs Day around here. We'd get up - Oh look no school, no work, it's time to shovel and then again - Oh look no school... We had a lot of good family time. Lots of board games with Princess (she dominates in Junior Monopoly), lots of train playing with Little Man, lots of shoveling and lots of shoveling. So the first blast of snow came - oh so pretty.

Good sledding on the hill behind our house. It even had two moguls which was great on our Dallas Cowboy flying snow jet ski thinger? (thanks mom)
Of course the first thing Little Man wants to do when he steps foot out the back door.
And then there was more snow..... that little head on top of the mound is Princess in the tree. The snow was sooo deep that you couldn't walk in it - let alone build a snow man or make snow angels...so we made an igloo.

Do you like her house decorating....she must get that from her Dad.

This is the kids on top of our bushes in the front yard. Spring should be interesting!

Next round of snow we couldn't actually get to the big hill behind our house, so we resorted to our cul-de-sac.

She actually got some good speed.

This is NOT the yard, it is the middle of our street!
And on Valentine's Day, Daddy had two dates. A lunch date with his lovely daughter and dinner with his bride.

The last week of February, our Little Man had another seizure. This is his second one and it's been almost five months since the first. Unfortunately it was in his crib in the early morning and we only saw the after effects which is called the Post-Ictal stage of a seizure. He started his anti-seizure medication in January and only ramped up to the full dosage (which is considered the therapeutic amount) about 5 days before this seizure. After meeting again with his neurologist, we decided to stay put with our current medication and dosage because the current side effects have already increased his sleepiness and appetite (The boy is always in front of the pantry!). In the meantime, we'll be purchasing a video monitor system, since his first two seemed to occur when coming out of sleep in the morning. Unfortunately there are so many unknowns in the world of seizures but if anything, it's really pushed us to lean on the Lord rather than ourselves, Google and doctors.

Beyond the second seizure, Little Man is doing great. Miss Terrific Teacher is back from maternity leave and Jimmo is thrilled. As for private therapy, we're taking a break from hippotherapy and we started with a new speech therapist and she's just fabulous with him. We're still getting great speech, occupational and physical therpay at school. Hopefully we'll have a lot of bragging to do in the speech department this year so stay tuned and keep praying!

Big hugs to all and come back soon!

Medical Update

We've had a busy month of doctor's appointments since the last post. The day before Thanksgiving, Jimmo got his adenoids removed. The poor little guy suffered from a slight case of sleep apnea but also had a runny nose basically 50 weeks out of the year. After waiting for about 3 months to get in with an ENT specialist that works often with special needs children, we found out they were 100% enlarged and needed to come out ASAP. The surgery went very well and the surgeon and anesthesiologist were outstanding. Once again Little Man proved to metabolize medicine very different than other children. After his seizure they said it would take about 2 hours to shake off the Valium. It took about 9 hours. After they removed his adenoids they said it would take about an hour to wake him up. After about 5 hours they wanted to admit him and we convinced them of our history and they finally let us go home.

And an update on our seizures. Praise the Lord we've been seizure free. On 12/2 we went up to Kennedy Krieger for a second opinion. The original neurologist suggested we put him on full time medication for seizure disorder. We'll do what we absolutely need to, but we are all about second opinions in the household. The second neurologist also agreed but recommended a slightly different medication. We're still in decision mode on this and will take the upcoming Christmas holiday to make our decision. But other than that, he's progressing well. School seems to be going fine and potty training...well...we'll just say OK on that one. OK so back to Christmas cards, baking, shopping and all that fun stuff! Fa la la la la, la la la la!

Creative Strategies?

Princess has devised a creative strategy to get around a rule that she often struggles with. When I'm on the phone, she is not supposed to interrupt (a common rule in most homes I'm sure). And as probably most of you know, she struggles with this rule. In the past 2 months she has started writing notes to me in her Kindergartenesque way. It's just the sweetest thing and I encourage her to do it often. I've saved a few that are just priceless. But back to her creative strategy.....so while I'm on the phone, if she has something to tell me (which by the way - she ALWAYS does) she now writes me a note. I've gotten notes that say - Can I wash a shew and Wat is fir diner. LOVE IT!

So on Monday night I was heating up some zucchini and snap peas in a pan with a little olive oil for a stir fry while coloring at the island with Princess. Suddenly we both looked up with crinkled noses due to a terrible smell....oh it was bad. Jimmo had walked in and he did not wait for his potty time on this occasion. I won't get into the ugly details but it was a grab him, run upstairs and soon after start the bath. Princess helped by grabbing a bag for the damage and brought it back down to the trash. As I'm almost done washing Jimmo off, Princess brings in this picture and says, "Momma, look at the picture I drew".

Translation: POP! The Stove is burning!

"Stay with your brother" is what I'm saying as I'm sprinting down the stairs. With all the commotion of the leaking diaper, I left the vegetables on the stove top. (OK we've all done something similar at one point...right?) Luckily they were on a medium/low heat and just got a little more done then we would prefer...but what was I thinking...ugh! The snap peas put off a popping noise as they sizzled in the pan which apparently made my 5 year old think to herself, "I'm going to draw a picture of this (twice), write out what is happening and then bring it to Momma and show her, she'll be so proud." I couldn't help but to then laugh at her creativeness but we definitely had to talk about important vs. unimportant information, the dangers of the stove and a great opportunity to discuss how Mommies are not perfect!