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!

Little Man Turns 3 - Happy Birthday!

Little man loves when people sing to him, so we basically sang Happy Birthday all day long. Jimmo woke up well rested and ready to go to school.

He had a great day at school and Princess and I came at the end of the day with cupcakes for the kiddos and teachers. This was my first baking experience with GFCF, interesting to say the least but you can see he enjoyed his cupcake. The actual cupcake was fine but the icing was slightly greasy in my opinion.We visited his favorite park since it was such a nice day. We were the only one's there so we took advantage and stayed till we could play no more.On Saturday we had our family celebration. Each year we celebrate Jimmo's birthday at this great farm out in the country. It takes almost an hour to get there, but we (especially me) love it and we look forward to it every year. They have farm animals, pig races, a cow train, pumpkin trampoline, tons of slides and an apple dumpling to just die for. But the highlight this year was their giant pumpkin trampoline. Little man dragged us back three times to go on this. Here's a great video of how much he enjoys it. Do you see a trampoline in our future?

And a few more pictures to enjoy....



And later that night we had one of little man's favorite meals - Chili. He loves somewhat spicy foods like a lot of kiddos with Hypotonia because it wakes up their little mouths. The 2nd GFCF baked good - birthday cake - was little to be desired but we all attempted to eat it. We'll get it right for his 4th birthday. Happy Birthday Little Man!

Fragile X makes it on NPR

This morning, Fragile X Syndrome made the news again. NPR did a great special with FRAXA on their upcoming treatments and the history of how FRAXA came about.

It's only 7 minutes long and can be found by clicking HERE.

News clip from Denver

I came across this video clip from my listserv today and thought it was helpful to share. A local station out of Denver did a piece on a family with a 15 year old Fragile X boy. It's always encouraging for Hubby and I to see older Fragile X kids talking and interacting with adults. The only concern we had about this piece is that we don't think scientists would agree that the "cure" is on the doorstep, as the mother stated, but we continue to pray for it.

http://www.kwgn.com/pages/video/?clipId=2912790&topVideoCatNo=undefined&c=&autoStart=true&activePane=info&LaunchPageAdTag=homepage&clipFormat=

Week 2 of School

Half way thru week 2 of school and Jimmo is going strong. As for Momma...still depends on the day. Mrs. Teacher and the aides have been wonderful. We had our first "Back to School" night this week, which was a great opportunity to chat with Mrs. Teacher and get to know her and how Little Man did his first week. He continues to be excited each morning when I get him out of the car and I have to tackle him to get my goodbye kiss in. The GFCF diet is going well. I definitely think his excema was tied to a dairy allergy. I have found the diet to be sometimes challenging for family dinners. Between the countless number of blogs out there and the library, we're slowly adjusting. It's a much healthier lifestyle so it's good for everyone. The juicing is going well. I've been trying to talk hubby into the Vita-Mix (thanks RF!). This "machine" is amazing and I think it might actually grind up a chouch if I tried. Princess has been testing out some of my concoctions and liking.....some.

When working on communication with Jimmo, we've collectively decided to follow the PECS program. We implemented it this past early spring and it's been going well for him. Essentially we've taken a picture of every toy in our house and one of all the food that he eats and we ask him to choose between 2 or 3 each time he wants something. For example, we have a picture of his toothbrush in the bathroom and he hands me the picture after he sits in his chair to let me know he's ready to brush his teeth. Or at breakfast, I show him a picture of a sliced banana and a picture of his cereal and he takes the picture from me that he wants to eat and hands it to me. Around mid-summer we worked on putting these pictures on felt boards with velcro and having him take them off the board and hand them to us. It's been a struggle over the summer with the boards and he usually pushes them away. He would rather take them from your hand. Today Mrs. Teacher was doing Discrimination trials with him and she devised a way (putting it on a slant) to use the board with success. Below is a video that Mrs. Teacher gave me this afternoon (isn't she the best) that shows him discriminating between a picture of the toy that he wants and a blank card - AND MOST IMPORTANT doing these trials ON the board. And Mrs. Teacher mentioned she started taping after doing it like 20 times and he was still successful.

Great job Little Man and thanks Mrs. Teacher for letting us share our achievements with our family and friends.

First Day of School

I guess Little Man had as much anxiety as his mamma on this day because he decided to get up at 5:40. Oh lovely...poor Mrs. Teacher. He was in a great mood all morning. He ate a huge breakfast and we had fun getting him dressed for his first day. When we were about to leave he got a little cranky so Daddy took him out back for a quick swing. That seemed to do the trick - always does. When we arrived at the school, Mrs. Teacher was there to greet us with a big smile. Jimmo charged right into the room looking for the ball popper that he fell in love with during the open house. At this point I let out a sigh of relief, ahhh, he's going to be fine. We watched for a little bit and gave him kisses and headed out. Another rookie move - forgot his lunch at home but luckily we don't live too far. I laughed when the school secretary showed me 3 other lunch boxes brought in late.


So off princess and I went on our first morning. We thought the only way to conquer our sadness of not having little man with us was to have some pancakes at the golden arches. I have to admit, it worked a little bit. Mrs. Teacher called and gave us a mid-morning update. He apparently had a rough 10 minute patch but a rice cake made it all better. We visited a health food store seeking GFCF flours and various diet items. Then princess had gymnastics. She was the only one in her class so she got lots of attention and I got to sneak a few pictures.

I think it was the longest morning of my life. The time went soooo slow. Princess and I came home and ate lunch and then eagerly sat out front of little man's school 15 minutes before the pick up time. He came running down the hall, glanced at me and then ran past me. OK so at least I got a glance and most important - he seemed very happy. Mrs. Teacher was amazed that someone could fall asleep sitting up and eat his lunch at the same time. That's classic sleep deprived Jimmo for you! His daily report came back great. He ate all his lunch like a big boy and it sounds like he actually had some fun. I think they'll work on shapes tomorrow - ;0) Just kidding.

Today is the first day of "school" for princess. We're doing Classical Conversations together. The format has the parents participate with the children and it meets once a week covering all major subjects in classical model. I felt it was a great fit for our family. Last year she was dragged to therapy after therapy appointment and could have used more 4 year old time. So this year I'm dedicating to spending time with her before she starts kindergarten. Although Classical Conversations is a home schooling class, they have welcomed us to join them for this year.


Thanks for all of your amazing prayers for our family. We will continue to pray for all of you with little one's also starting school - whether it's preschool, kindergarten, 1st grade or 8th grade - BIG STUFF.

Closing Ceremonies

If you're a summer bug like me, this is one of the saddest times of the year. For me I would rather put away Christmas decorations then say goodbye to the pool and suntan oil..oops I mean block! ;0) We actually had a stay at home weekend, which has been very rare this summer. We started Friday night with a walk to Dairy Queen, which princess use to call Fairy Queen and I still sometimes make her say it! Yum! And I packed some GFCF cookies for Jimmo which he enjoyed very much. Luckily he never really liked ice cream because of the coldness so I don't have to feel guilty for indulging! On Saturday we started out with French Toast. Then we watched the most highly anticipated game of all summer - Syracuse vs. Northwestern - first football game of the season. Well that didn't work out too good. And then we did a little grill shopping that evening.

But the big closing ceremony was on Sunday. We took the kids to a nice size water park for kids from ages of 1 to 10 or so. It's about 25 minutes away. We went with our cousins last year and had a blast. We loved it even more this time! There have only been a handful of occasions that we can tell Jimmo is having a GREAT time! This definitely was one of them. He let out more eeeeeeeh's (which in Jimmy language this means - WOW mom and dad - I love this place) then we ever heard. He had a grin from ear to ear the entire time. On the lazy river he was the captain on our boat and I think we went around about 6 times the first time we rode it! They have all kinds of slides for all ages. Princess got a little daring towards the end and rode on Little Pete, but Big Pete still awaits us for next year. We packed a fun picnic lunch and then ate dippen dots on the way home.

And then on Labor Day - we truly "labored" around the house. Hubby put the "almost" final touches on the 1/2 bath and did some yard work. And I, well I learned a valuable lesson. Never ever procrastinate on school supplies and go the day before school starts to Target, Wal-Mart and Staples. Rookie move - I'll get better. But in the end, it's 10:15 and we're ready to go.

Last week visiting Jimmo's school, my emotions continued to be full of excitement. It was a beautiful large, bright room within the preschool. His teachers and aids were amazing. He walked right in and began to play. And not to mention that this is what is best for my Fragile X little man - the constant routine, therapies throughout his day and the ABA program. There are only 3 little guys in his class and one teacher and 2 aides. Could it be any better? Although our doctor and clinic has told us this is the best for him, although we've prayed about this over and over again when making the decision and continue to pray about this.....tomorrow always felt like it was so far away. Tonight my heart is heavy that my little man has to go to school. He's going to school before his big sister - who would have ever thought. I pray tonight that this truly is the best for our boy and he will grow and prosper more then we ever imagined.

August Catch Up

Yikes, this might be my slowest blogging month yet! August WAS a crazy month. We started the month off with VBS. Princess enjoyed herself tremendously. Literally each morning she would jump out of bed and give a yelp – “Today’s Vacation Bible School”. At the end of the week, she told me that when she grows up she wants to be on stage at Vacation Bible School. So Diana – you have a slot filled for 2020!

That evening we left for upstate New York. We stayed in a hotel on the way up to break up the drive. Party time for both little man and princess. Because of how late we arrived we were not able to do our traditional hotel celebration (see Visiting Pap Pap). So instead we ate breakfast in bed the next morning. Not only were they able to eat breakfast in an unmade bed – but they could watch Little Einsteins when they did so. Now this was a vacation! The trip to NY went great. We celebrated Papa’s 70th birthday and we had a new family portrait done. We visited Hubby's Best Friends up in Watertown New York. They have 4 year old triplets so Princess was in her glory. Here are the four of them playing at the waterfront of Alexandria Bay.

Both kids did wonderful traveling. Although I have to recommend 2 items for anyone who travels more then 5 hours in the car with their children. If your child is around the age of 4 – we highly suggest a Leapster. This kept our talkative princess occupied for hours – literally! And it has great educational games. Second, we thoroughly enjoyed the game – Rubber Neckers Jr. Now Little Man was too young to play this game, but the entire car was roaring with laughter as Hubby was forced to try and get another car to give the peace sign back to him.

This month we’re also saying goodbye to our wonderful therapists we’ve had thru the Early Intervention programs. Peggy our PT, Tracy our OT and Jin our Special Educator. Some of them have all been in our home visiting us weekly since Little Man was such only 8 months old! They have all helped us with major milestones and we thank you from the bottom of our hearts for all the love you have for our little man.

But speaking of our therapists….Tracy, our OT, recently attended a listening therapy conference and we started Little Man on this program. I have never heard him be quiet for 30 minutes, but he truly loved it. More to come on this program.

Here he is listening for the very first time - we thought the swing would be the best since he's usually anti-anything on my head. He didn't even wince at the large earphones.

And finally, our update on the Gluten Free Casein Free diet (GFCF). We visited with a Nutritionist last Friday. Her name is Kelly Dorfman and she specializes in Nutrition and how sensory is affected – PERFECT! She was extremely helpful and answered all of our questions. We started Casein Free the next day. We’ll do this for 2 weeks and then we’ll add Gluten Free. Now I thought it would be helpful to give an explanation of what this entails:

Casein Free – Essentially means eliminating all dairy
- Milk in all forms
- Butter
- Cheese
- Yogurt
- Lactose
- Whey

Gluten Free – Eliminating grains that include gluten
- Wheat
- Oats
- Barley
- Rye
- Semolina
- Spelt
- Triticale
- Kamut

Now one might be questioning, why would these people put themselves thru this with a 2 year old. So I’ll give a quick and dirty explanation on why the GFCF diet is popular with special needs kiddos. Researches have determined that a number of children with disabilities are not able to breakdown food like normal developing kiddos do. Some signs of this include the consistency of their “discharge” and the proteins in their urine. Proteins consist of long chains of amino acids. A normal intestine can break the bonds between proteins and amino acids properly. There are studies showing that because of mutations, these kiddos incomplete digestive systems leave amino acids bound into short chains called peptides. If the enzymes designed to digest wheat and milk are not functioning properly the resulting peptides could still be biologically active. So essentially they can’t break down the proteins in casein and gluten. This is not proven medically or course, however we’ve heard so many successful stories with FXS kids so we figure a diet is not harmful and worth a shot. Now we’re also well aware that with Fragile X, we’re talking about a chromosome issue and it will definitely not be cured with a GFCF diet. However what we’re seeking is little man to have relief from some of the autistic like symptoms that cause him more trouble then he already bares for learning activities. It’s also been shown to help with speech and general motor planning. So we’re giving it a trial session for a month and a half and we’ll re-evaluate and see where we are. It's so nice to have another family member on this diet - Auntie D has been using it for medical reasons and has had great success. I still have not found a pre-made bread that is GFCF that tastes decent, but I’m on the prowl. Oh LL why did you leave me!!!!

The nutritionist has also suggested eliminating all juices, so essentially all the little man can drink is water throughout his day. And don't worry milk lovers - we're taking a calcium supplement drink. But since veggies have always been a struggle with little man, we decided to follow the lead of our Uncle Jeff and take a stab at Juicing his veggies. This way we’re still getting them down and it’s another drink alternative. My gracious OT, Tracy, let us borrow her juicer for the time being. Because he’s so orally sensitive, he loves to drink, so the nutritionist agreed this would be a perfect fit. So on Saturday, hubby and I mixed up his first Veggie Cocktail. One Beet, 8 pieces of Kale, 2 Carrots and an apple. Little man slurped this down in seconds – we stood there in amazement. So a juicin we will go! The grocery clerk looks at me like I’m crazy and has to ask me what most of the items are. The diet and juicing do require weekly trips to Wegmans – darn! ;0) I just got a few books out on the library and hubby is researching juicers. We’re looking at the Breville Juice Fountain Elite…if anyone has any input we’d love to hear it. We also welcome more GFCF recipes or juice recipes!

Drinking his first veggie cocktail!

And finally school starts next Tuesday for little man. We had our open house today and it was quite exciting. The classroom is bright and large and the teacher seems wonderful! We’re truly excited for this stage and are anxious to see how he likes it! Thanks for reading and your continued support and prayers for our family!

Ta Ta for now

Back from the Conference

What an amazing time we had at the Fragile X conference in St. Louis. Thank you all for your prayers for us. We left early early early last Wednesday and I don't think Momma got more then 2 hours of sleep that night. I have never left my little people for 4 nights and 5 days. I knew it was for the right cause and we had to go, but it's still hard to leave so anxiety got the best of me. We left them in wonderful care with Gran Gran and Papa. I think I let go of everything by noon on Wednesday when we checked into our hotel and our lovely room was pool side. Not that we ever had time to go to the pool, but just to know your pool side was sweet enough for me. The kids did amazing and so did Gran Gran and Papa. They even took a field trip...to Wegmans of course!

We kicked off immediately with sessions upon arrival. Our first was within an hour of check in and this continued each day from 8-5PM thru Saturday. Over the course of the conference, hubby and I went to a total of 35 different sessions on all the various components of Fragile X. Everything from genetics, school immersion, school transitions, special needs school laws, Hyperarousal/OT, Speech therapy, Behavior therapy, Financial planning, Dealing with family, New treatments, Sensory Diets, Testing Guidelines, Sibling Strategies, Visual Strategies, Pharmacology, Music Intervention...to name a few. As we mentioned before, this was a conference of all the top doctors, researchers and therapists who specialize specifically in Fragile X. A rarity, to say the least! We met dozens of families from all over the country. Only one other family, who we already had met was represented from Northern Virginia but we're still scouting!

So after these wonderful, intense, emotional and extremely educational sessions we decided to take advantage of this downtime for some date nights. One night we went to a Cardinals game (oops forgot my camera this night) but we had a blast. It felt like the old days for sure! The next night we went out to dinner and then to visit the infamous St. Louis Arch.

On the last night they had a Gala, hence our attire, which was a great way to end the conference. They announced the next conference in 2010 will take place in Detroit - woo hoo - Motown city. They also had a raffle and silent auction where my sneaky and loving hubby won some jewelry for me and Disneyworld passes for our family. There were a good number of middle and high schoolers with Fragile X at the conference. It was comforting to see them and how they interact with adults. We definitely saw a wide spectrum of kids but it helped us understand our future just a tiny tiny bit more.

Our flight home was great because hubby begged the Delta desk for an earlier flight so we could see the kids before they went to bed. It was so wonderful and overwhelming to be at home. The millions of videos and sessions we had watched and heard over the course of our past few days was actually very real, right in our living room. Little man's mannerisms can sometimes be translated as, oh he's still a baby. But this conference made everything more clear for us and helped us realize that he's not going to grow out of them and we'll see these over the course of his life. So re-entry was a bit of a shock for both of us, but now we're equipped with more information then we ever imagined and hitting the ground running.

OH and hooray - we signed our IEP yesterday morning! Little man starts school Tuesday, September 4th. And NO he's absolutely not riding the bus. His Momma will drive him until he begs and pleads her for it!

Fragile X Awareness Day

Well folks, today is Fragile X Awareness Day. Hubby and I are busy preparing to depart for the Bi-annual Fragile X Conference tomorrow. This year we were not able to do much for the awareness day due to the conference, but no worries, we’re already working on our plan for next year! We’re very excited for the conference and excited to soak in everything we possibly can. Below is an article regarding the conference. We’re anticipating some pretty exciting seminars. Please pray for our travels and family during this week.

High Hopes for New Treatments at Fragile X International Conference
ST. LOUIS, July 21 MO-National-Fragile-XST. LOUIS, July 21 /PRNewswire/ -- Breakthrough research findings describing potentially significant new treatments for fragile X syndrome (FXS) will be presented to nearly 1,000 family members and professionals at the 11th International Fragile X Conference in St. Louis July 23-27. More than 200 speakers will describe the latest treatments for symptoms related to the mutation of the Fragile X gene and powerful new medications being researched.

Multiple early trials are under way of drugs that show great promise for improving the cognitive, anxiety and behavioral problems associated with FXS."Many new treatments target correcting the mechanisms that cause FXS, in contrast to supportive treatments that address various symptoms that dominated past research efforts," wrote Elizabeth Berry-Kravis, M.D., Ph.D., in the National Fragile X Foundation Quarterly (http://www.fragilex.org/html/journals.htm) journal.

Recently featured in Time (http://www.time.com/time/magazine/article/0,9171,1818268,00.html) magazine, Fragile X research is being carried out in all corners of the globe. In the United States, Congress recently appropriated nearly $2 million for continued funding of FXS-related public health activities via the Centers for Disease Control in Atlanta. The National Institutes of Health will fund nearly $25 million in FXS research this year.

The biennial international conference is preceded on July 22 by National Fragile X Awareness Day, proclaimed by Congress in 2000. FXS, the world's leading known cause of inherited intellectual disability (formerly referred to as mental retardation), is also the most common known genetic cause of autism. Scientists are studying FXS as a possible model for better understanding the role that genes play in autism. FXS today affects more than 100,000 Americans. Another one million are carriers of the Fragile X mutation and at risk of passing it on to their children and developing the newly discovered conditions of fragile X-associated tremor/ataxia syndrome (FXTAS), a Parkinson's-like condition causing tremor, balance and memory problems in adults, and fragile X-associated primary ovarian insufficiency (FXPOI), a condition that can result in premature menopause for women as early as their late teens.

For more information, visit the National Fragile X Foundation web site at FragileX.org (http://www.fragilex.org/html/home.shtml).

Hippotherapy Begins

Yesterday we had our second Hippotherapy and Momma remembered her camera this time! OK so what is Hippotherapy. Hippo is the greek word for horse so technically it's Horse Therapy. My logical husband often gets frustrated with this and has repeatedly asked for me to call it Horse therapy. However the legalistic in me continues to call it Hippotherapy.

What is Hippotherapy - it's a therapeutic treatment used with a wide array of patients. In our case it's great for core strengthening, sensory input and eventually it will help speech as well. The way a horse walks gives a repeated input to the child and horses have different gates which offer various types of input to different children's needs. All quite fascinating stuff.

Now your next question - does it work? Well the first week we tried it, I didn't see any significant difference. But yesterday after our second session, little man was the sweetest ever. Very calm, relaxed - overall we had a fabulous day! Was this because of Hippotherapy or just a coincidence - time will tell my friends.

Little man rides for 30 minutes with an assistant on each side a guide in front of the horse and our PT giving instructions. He rides forward a few rounds, backwards and side ways. Then he does some stop, stand and sit exercises. We're on the wait list for September so hopefully this will be part of our regular routine soon!

Here's a picture of our cutie pie riding backwards...more to come on our progress with Hippotherapy!

TIME highlights Fragile X

Fragile X is rarely in the news and almost never in a large publication like Time Magazine. Today is a huge day for the awareness and research world of Fragile X to be featured in a national publication. Read and pass along to your friends and family to help us spread the awareness.

http://www.time.com/time/magazine/article/0,9171,1818268,00.html

Top 5 Greatest Sentences

Last Friday we received an e-mail from our Kennedy Krieger Fragile X specialist that he would like to have a call set up regarding Princess’s test results. This e-mail made our stomach turn. It brought back the memory of Jimmo’s diagnosis. In April of 2007, we had gotten a call from our extremely overbooked Neurologist to see him the very next morning at 7AM to discuss test results. We knew there was not a chance that he was fitting us in so quickly to say – your boy is fine and it will all work out. So that same memory flashed before us. We spent the weekend preparing ourselves and talking it thru.


There were two possible outcomes:

1. She’s a carrier like her momma – and hopefully in 20 plus years when she goes to have children, they’ll be better ways to study her eggs versus embryos to determine which have Fragile X and which do not.


2. She has the full mutation. Because girls have 2 X chromosome’s, the other X provides the missing protein. About 50% of girls with the full mutation have cognitive disabilities and the remaining usually have learning disabilities.

Needless to say it was a long weekend and Tuesday at 3:30PM couldn’t come any sooner. And of course Tuesday at 3:30 I had to be in route with the kids to speech therapy and hubby was on Capitol Hill for the day – interesting timing for both of us. So as we’re sitting in traffic on the inner loop of the beltway, the doctor says to Hubby and I who were conferenced in together, so now that we know her results are normal, we can look at the full picture of Fragile X and your immediate family. Both of us said simultaneously – “Did you say normal?” Apparently the lab was supposed to send us a copy a few weeks ago and the doctor thought we had a copy and had a different agenda for this call. These words had to be in the Top 5 greatest sentences that Hubby and I’ve heard in our life. Right up there with – Will you marry me? I do...and...I do! I’m pregnant! I’m pregnant Again!

Princess is completely free of Fragile X and will not pass this on to her children. At least in our portion of the family line – Fragile X stops here! Thank you for all your continued prayer for our family.

Can someone please tell me how we went from here.......

to there.....so fast? Breakin momma's heart this girl.

Our first IEP

Yesterday hubby and I kicked off a new phase of our journey with Jimmo - our first IEP. For those of you who are unfamiliar, IEP stands for Individualized Education Plan. Back in 2004 when congress passed the IDEA Act - Individuals with Disabilities Education Act, it was required in the public school system that an annual IEP must be created to describe a student's special learning needs and the special education services to be provided to meet those needs. The IEP team consists of parents, the students teachers, the principal and a representative of the school system.

All of Jimmo's private therapists were amazingly helpful with providing feedback to the goals and objectives of the draft copy and after several hours of preparation, we were ready to advocate for Jimmo's needs. The team at the meeting was quite pleasant and willing to work with us. Jimmo will start this fall in the special needs preschool. Specifically in a classroom which our county refers to as PAC - Preschool Autism Classes. And just for clarification, Fragile X is not Autism, but has autism like tendencies, so he'll fit right in with these kiddos. We advocated for this classroom because of the 5 teachers to 6 student ratio and the heavy emphasis on routine. He will also receive 3 related services during his time at school - Physical Therapy, Occupational Therapy and Speech and Language Therapy. And we'll continue to do all three privately after school as well. Overall the meeting went well. We do need to reconvene because the physical therapist was not able to make it and we had a few questions about her goals, plus we are requesting more speech and language hours. We're hoping to have this wrapped up by this coming week.

We're both very glad to have the bulk of this process behind us. Hubby and I chuckled on the way in to the meeting - 1 IEP down, 15 more to go! We couldn't be more happy with our county. Fairfax is the 13th largest school system in the nation and has an outstanding program for special education services. We're so thankful. Looking back 8 years ago when we bought a home in this county, we really had no clue how important this decision was. Certainly God had his hand on our decision.

And finally we received some great news. Originally Jimmo would attend a school down the street, that is not our "assigned" elementary school. Special needs preschools are not at every elementary school due to demand and cost. So this meant that Little Man and Princess would be at separate schools until Little Man reached Kindergarten. Well our "assigned" elementary school is starting a PAC class so now Little Man will be in the same school all the way thru 6th grade and will be with Princess as well.

OK enough acronyms and Fairfax County talk for one night - big hugs to all!
Happy Early Father's Day!

Oh tree how we'll miss thee!

A pretty violent storm ripped thru our state yesterday. There were many places where a tornado touched down - yikes. We just had some very high winds. But high enough to knock down one of our 30 foot oak trees! Such a sad sight. This was one of the trees that held hubbies hammock. It also added a great deal of privacy to the new library up on the hill. But as hubby pointed out as he stood on the roof of our garage with his might chainsaw (wish I took a picture of that!) - perhaps this gives us another potential spot for our swing set!

Here are a few pics of our lovely tree...oh how we'll miss your shade, privacy and the endless nights in the hammock you provided!

And we dropped the camera while taking these..so expect a few less pictures in the near future

Weekend in Philadelphia

So I'm a little behind on my blog duties...so I'll play a little catch up and hopefully be consistent soon (HA!) I think the word "consistent" has left our vocabulary since Little Man was born!

Two weekends ago we went up to Philadelphia to spend time with Nana, Auntie D and Uncle Frankie. Then Saturday night we went over to Pappy and Rhonda's for a surprise 50th birthday party for Rhonda. Lots of fun! Although on the ride up, our little man has officially left his cocoon as the "quiet traveler" of the two. He use to love his carseat and be very content. Hmmm not so much on this trip. So mom and dad will have to devise some new "soothing tricks" before our next car ride that is for sure!

We visited a county fair and had loads of fun. We also learned that our princess has no fear of rides, like her mama! Little man enjoyed a few rides, but maybe next year he'll enjoy more.

Jimmo doesn't necessarily love this ride but doesn't hate it either I guess.

Mama and princess are in the 2nd car...by the end her hands were waving in the air like a roller coaster pro!

European bungee jumping - hysterical!

Nana and princess riding the copter, little man was too short for this ride...next year buddy!

Since we've been home, we've been immersed in the preschool diagnostics process for Child Find. I'll keep my bureaucratic system comments off-line for now....grrrrr. Jimmo's portion of the testing is finally complete and now we have our parent conference, the eligibility meeting and finally the IEP. I will be so relieved to have this completed and then ready to enjoy the summer!

One last comment, hubby and I are thinking and praying about putting Jimmo on the gluten free casein free diet (GFCF) for a few weeks this summer before he starts school. This is an entire family undertaking and no small task at that. We figured a 4 week trial period would be much easier in the summer when he is with us 24x7. We have heard a few families have tried this with their Fragile X boys and have seen improvement in attention, behavior and the autistic tendencies that tend to accompany Fragile X. We'll keep you posted.

Big hugs to everyone and happy summer!!!!!