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.

WOW....is the only word we can title this entry

We had our annual Back to School night 2 weeks ago. During the session with Miss Terrific Teacher, she mentioned that we should take a stab at potty training with little man. She had mentioned this in the spring, but husband and I were amazed that she thought he was ready. But you don't earn that title easily so we knew we would give it a try sometime in the near future. He had an occassional morning when he was completely dry and he seemed to have a few patterns of 2 hours dry during the day.

So......

The next morning I got out the potty insert that I've been holding on to for my dear son. Not knowing if he would someday be too big for it when he was ready or perhaps never be potty trained as this is the case for some special needs adults. But I held on to it from the days of potty training princess with a prayerful and hopeful heart. I place little man on the potty, sit down myself and within about 10 seconds of sitting down I hear a water-like sound. What? I look inside the little protector cup and sure enough, he's going potty. WOW. I'm inshock and he's looking at me like what is your deal and then I break into my old potty song and he laughs hysterically. I really wasn't expecting this so I didn't have anything prepared for rewards. Realizing that my song might be close to enough I sang it again and he clapped. In the bathroom we keep this goofy but endearing singing duck. My grandparents like to send the kids those singing animals that you press the button and they light up and sing one of those songs you can't get out of your head for days. They frequent Cracker Barrell and apparently there are a plethora of them there. We usually play it for him when he's in the bathtub, because this one sings "Splish Splash I was taking a bath" in a strange adult like voice. However we stopped because he tends to get overexcited with this toy. So I looked at it and thought, there's a huge reinforcer that he'll love. Let him press the button and he was in heaven. DONE - forget the M&M's and the sticker chart - I have my reinfocer.


So we get ready for school that morning and I proudly write in Jimmo's daily school journal of his success. Around 10:30 I'm sitting in my morning bible study and I see I have a missed call. Because of last year's fall, I jump to the phone very quickly when I see it's from school. Miss Terrific Teacher called to say - "He did it again!". WOW. Could this be true? I never imagined that we would potty train a special needs child this early and it would start so easily. I flutter back into the study and try to listen to my Beth Moore study but I'm just giddy with excitement. Before I pick him up from school, I run into Target to buy some pull up's as the teacher requested. WOW I think to myself. Now we know this is about 80% just dumb luck with timing, but it's still a WOW for us.


I quickly read up on the process suggested by Miss Terrific Teacher since Jimmo is her 20th special needs student she's potty trained. Clearly much experience in this area. The short and skinny is that we'll start with pure schedule training which is set by my watch timer. The objective is to teach the child to wait until he is taken to the potty. This hopefully paves the way towards independent training, where the child understands they have to go and initiates to go to the potty. This whole process could take 6 months to a year - who knows. But we knew we would brace ourselves for a longer potty training.


So for the past two weeks he's gone successfully on the potty about an average of 2/3 times per day between home and school. And then there was the last 24 hours - WOW. He went first thing in the AM before school, which is becoming routine and then went 3 other times at school both #1 and 2 (sorry to be graphic).He then came home and went again and again. Essentially he stayed dry ALL DAY LONG. Seriously - this is unheard of. Miss Terrific Teacher is in shock as well as us. We're so proud and trying to stay focused that this could still be a long process....but WOW. Little man turns 4 years old next Thursday and we would make the guess he's at an overall cognitive level of about 20 months (minus speech since that skews the charts for us). 20 months - WOW.

Sorry to give a "throne" picture, but we thought this one was clean.

Notice our reinfocer looming behind little man!

O.K. Guest appearance from Hubby. I don't have my own blog to rant on, so I thought I would share my experience from the first day of kindergarten.

I call Princess around 3:30 to ask how her day was and here is how the conversation went:

Me: How was your first day princess?

G: Pretty good

Me: Tell me about your day, were you a good girl all day?

G: Well, I was pretty good but I had one problem

Me: Oh really? What happened pumpkin?

G: Well they made us watch this show and there was a bad word in the show, so I cried because I wanted to go home and see mama

Me: Whoa, whoa, slow down. What show did you watch? You watched TV at school today!

G: It was a show about the President

Me (realizing she watched President Obama's speech to school children) And he said a bad word? What did he say?

G: Um...you sure, can I say it?

Me: Yes sweety, go ahead, you can tell daddy

G: (In a whisper so as not to get in trouble she says) Stupid, he said stupid daddy

Well, most everyone knows my background in politics, so I am naturally already skeptical about our President. However, when all the controversy broke surrounding his speech, I thought, this is silly, he is the President and he just wants to tell kids to study hard and never give up. I figured it was a nice idea and thought those being critical were being way too partisan.

Now I am wondering why they showed his speech to a kindergarten class and why he had to use bad words! Everyone has a first day of school story that stays with them forever and mine has to be about the President of the United States using the word "stupid" in a speech to my daughters kindergarten class. I have a few new ideas for a better use of the word stupid:

* Running up $9 trillion in debt that my kids will have to pay back is stupid
* Having the same people who brought us the postal service and the department of motor vehicles take over our health care system is stupid
* Taking God out of the public schools and treating it like a crime to mention the name Jesus Christ in schools is stupid
* Using the word stupid in a speech that 5 year olds will see is VERY STUPID

What I don't understand is why the President had to teach that word to my daughter's kindergarten class!

Wheels on the bus go round and round

Big day at our home today. Little man started his second year of preschool and Princess started Kindergarten. It's been so busy to get them ready, that I haven't had much time to be sad. And honestly, they were both so excited for school this morning, that it made the process a whole lot easier for an emotional Momma.

Let's start with the Little Man....


Like I said, this is his second year of preschool in the PAC (Preschool Autism Class) program. Is all I have to do is say "Jimmo goes to school today" and I get my 30 tooth grin instantly. God continues to protect me on these days of going back to school. It never fails, but the day before he goes back to school he has a rough day at home. Whether it's a spring break, summer break, Christmas break it's always the same. I'm convinced this is His way of wrapping His arms around me to reassure that we're doing the right thing. So as expected, yestereday he was a bit ugly and today he slept well and woke up happy as a clam.

So here is Little Man before leaving for school today.

And here he is so happy to see Miss Terrific Teacher.

I always ask him for a kiss at the kiss and ride line and today I got a very big wet one!

And then for Princess....

So because she's afternoon kindergarten, it gives us time in the morning together. This makes me very happy and I feel like I get the best of both worlds. She was very anxious this morning to get dressed in her first day of school outfit. We had a lot of fun picking it out this summer and it's been hanging on her closet door for about 2 weeks now...can we say DIVA? She must get this from her father.

So here is our traditional front door picture.

This is at the bus stop that she rides ONLY with Kindergartners.

She was extremely excited about this part.

And here is a new friend we met at the bus stop and there was another little guy but he was not keen on a picture with 2 girls. And if you're wondering, her backpack is so large because of school supplies so hopefully it won't be this big again this year.

And she's on the bus...

Then overprotective Momma drove to school to beat the bus to see her get off.

Here is her lined up with her classmates.

Appears to be doing just fine don't you think?

After the last picture, she starts walking away from the line and walks into the school. I stopped her and asked where she was going and she said - I'm going to find Jimmo. Oh boy. Good luck teachers with our social butterfly! I am now spending my short free time making cookies to have when they get home. And part selfishly because baking is a good thing for me to do on my first day home alone. Happy Back to School everyone!