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