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!

And there goes October

After his birthday, the month just slipped away on me.

We'll start with a medical update. The Tuesday after Little Man's birthday, he had a seizure early in the morning. It appears it was a short series of seizures and most likely he started in the early morning. They were non-convulsive but I knew something was very wrong and called 911 immediately. It wasn't until the EMT arrived that it was confirmed. After getting an IV and Valium, he was very sedated and basically slept the entire day. After a few tests, pricks and scans, it was confirmed that the seizure was not related to a sickness. 20% of FXS boys have seizures so we knew at that point it was most likely part of his syndrome. We got a very fast and intense training on seizures and now know his odds are over 50% that he'll have another one. We had an EEG completed last week and the neurologist suggested due to some spike wave discharges that a daily medication for seizure disorder was needed. We are going up to Kennedy Krieger on 12/2 for a second opinion, as this medication has tons of side affects and he would be on it for a minimum of two years. Jimmo went back to school a couple weeks later. We had to ensure the staff was trained and a care plan was in place for the medication to administer in case of another seizure. He's very happy to return to school and just in time to enjoy a couple more weeks with Miss Terrific Teacher before she has a baby.

And then we blinked and Halloween was here. I'm a bit crazy over Halloween and have passed this gene on to my Princess. Funny enough I've watched my Hubby morph into a Halloween fan, but it's probably just to make his wife happy, which it does! We carved our pumpkins and hung our giant spider web out front. Hubby bought a fire pit to have in the bottom of our driveway. Little man doesn't enjoy trick or treating much so we thought it would be a fun alternative to greet our fellow trick or treaters and enjoy the evening.

And what a special treat to have Halloween this year on a Saturday. This gave us extra time to enjoy the day. We kicked it off with a rally for the local gubernatorial candidate - Bob McDonnell. Here is Princess with a well known mascot at the rally. Happy to report the morning after the election that WE WON!

We then went to a local park and rode the Ghost Train, formerly known as the Boo Train. This has been a family tradition for a few years. Jimmo especially loves the train ride and Princess enjoys the candy at the end. Here is a quick shot of us waiting (and waiting) in line. This was at 10AM in the morning, I can't even imagine what the line is later.

Later that afternoon, Hubby eagerly got everything set up with the fire pit and I made some yummy snacks and warm drinks for our evening....and then the rain came. BOO HOO! Maybe next year (sniff sniff). At the last minute we (Husband, Nana and myself) decided to dress up as well. Just like the old days when you dressed up with things from around the house and not a $30 (or more) costume from Halloween Express. I went as a cat, Hubby was Bob the Builder (princess came up with that one) and Nana, well Nana went as fan to the "other" team of the World Series.

Presenting - Miss Madeline....one of our favorite book series

and Little Monkey - year 2 - doesn't enjoy the hood of course

Madeline with a kitty cat

Nana and Madeline

The crew ready to go

Bob the Builder and his pet kitty

One of my favorite pics - trick or treat!

Happy 4th Birthday Little Man

And another year goes by so fast. Jimmo turned FOUR this month. I won't go into all of our proud accomplishments this year since about every other blog entry is a bragging session. We went to our favorite pumpkin farm for the 4th year in a row for his birthday. Each year there is more and more that he enjoys, but as you might remember from last years video, he LOVES the giant pumpkin jumping pillow.

We took the cow train ride again this year.

And yes for some reason at the last minute I jumped in the cow behind him - Nervous Nellie I am!

Georgia and Dad rode bikes around the dirt path obstacle course they set up.

And for the first time we tried the rope swing. Little man thought I was tickling him the whole time - maybe in a few years. But princess got the hang of it.

Of course we always enjoy the slides
We did miss the pig race this year, which is always a hoot, however we made sure that we got our delicious apple dumpling. I seriously might drive an hour just for this dumpling. Every year I say I'm going to recreate this thing and make it for Thanksgiving dessert....maybe this year.

And Kids - look what happens when you don't eat your vegetables!

For dinner we had Jimmo's absolute favorite meal - MEATLOAF. Oh and this isn't your momma's meatloaf (no offense mom), it has horseradish, Dijon mustard, mushrooms and all kinds of yummy things in it. He seriously eats more than his Momma on meatloaf night. We had some GFCF cupcakes, that he didn't really care for - why do I try on the sweets with this boy? And then some presents!

And finally for fun....a few things we're up to. One of Jimmo's favorite things to do at home is Starfall on the computer. It's a great program that covers letter recognition to comprehensive reading. Princess has done it for some time and Jimmo is just loving that he gets to sit up and do it with her like a big boy. She goes thru the letters and he claps for more. When Mom or Dad do it with him, he puts his hand on the mouse and we say "click" and he presses it. We just have to maneuver it to the right place to click each time. He's very proud but now every time we're at the computer he's basically begging to join you! Dad caught a good shot of them working on letters together.

And finally we're doing Hippotherapy again this fall. We signed up with a therapeutic riding farm that is a bit closer and has evening classes so we don't interfere with school. I have a feeling it is going to get mighty cold in the evenings come November. The first class he did great, the second one - well he literally fell asleep and was snoring on the horse. Since then we always try to get naps on Thursday afternoons and he's doing great. He rides forward, backwards, side ways and now on his knees. He rides either one of the two smaller horses - Peaches or Cinder for 45 minutes. And then Princess has the privilege of feeding the horse apples afterwards. Here are a two quick shots from two weeks ago.

His overall physical strength has greatly improved this year. We're still looking for some better core control so hoping this fills the gap. This fall he's riding with a PT and as he gets stronger, we can eventually switch to riding with a speech therapist.

Happy Birthday sweet boy - you're a gift to us each and every day.