5 YEARS!

IN 5 YEARS we may have a treatment for spinal muscular atrophy (SMA). The #1 genetic killer among children under 2 years old. I'm re-posting this because I realize the last post on this topic was massive and you may not had time to read the information I provided. So here's the 411...

Currently SMA is a death sentence! But there is hope. Do you know that researchers are on the brink of a cure! 5 YEARS!!!! According to the National Institute of Health (NIH) "SMA is the disease CLOSEST to TREATMENT"!

This is important to me for sooo many reasons. 1. Because I am a mother, and 2. Because my mother had Parkinson's disease and my father had Alzeimers disease and research for SMA will benefit advancements in more than 600 neurological disorders like Parkinsons and Alzeimers! I don't know about you but this blows my mind!

A cure is possible with funding. So please do what you can and donate. Be a part of a miracle! Help to save lives! Go to http://www.firstgiving.com/juneangelbaby

Thank you!

More New Words!

Today Juliette and I were playing a game that she absolutely loves to play almost daily. I call it the "Swiper Chase". While humming the swiper tune (dah-dah, dah-dah, dah-dah, dah- dah), holding her Swiper doll, I pretend he's lurking at her from behind the couch or coffee table, then he comes after her while she runs and screams in delight. She loves it. Today Daddy asked her "What does Swiper say?" and Juliette responds "Oh Maaan!". It was hilarious and the cutest thing I ever heard. I'm amazed at how much she is saying these days and she hasn't even started speech therapy yet. She actually starts next week so I'm excited to see how much more she will progress with therapy.

On Tuesday morning we took a tour of Tutor Time, a preschool near our house. As we walked in the entrance to the office, Juliette looked around and pointed to the ceiling. She shouted clear as day "octagon"! I looked up and sure enough the entryway ceiling had architectural detailing in the shape of an octagon. Needless to say I was proud as pie and the woman in the office, who was the owner as it turned out, was beyond impressed. She said she has never ever heard anyone notice it before. LOL!

Can you donate to a good cause?

Have you heard of SMA (spinal muscular atrophy)? I never did until a fellow mommy on the parenting board I belong to lost her sweet baby June to SMA. June was only 2 weeks old. Since losing her sweet baby June, Molly has done all she can to spread the word to raise awareness and support for SMA and her friends have come together to help her carry out this mission. Wont you please help by making a donation in honor of sweet angel June Marie Howsden?

SMA is a disease that attacks the neurons responsible for muscle movement. It is the #1 genetic killer of children under the age of 2. 1 in 40 Americans carry the gene that causes the disorder. Amazingly enough, the National Institute of Health has selected SMA as the closest to treatment of more than 600 disorders, including Parkinsons and Alzheimers. Leading US researchers have stated that a viable treatment for SMA is possible within 5 years IF they are provided the proper resources.

Our goal is to raise $10,000 by October which would have been June's first birthday.

If you can, please help and click on the link below to make a donation. No donation is neither too big or too small. Anything you can give will be a tremendous help to all families who are dealing with this in their everyday lives.

Thank you.

http://www.firstgiving.com/juneangelbaby

To learn more about SMA please watch this 13 minute video

Invisible Heroes (Full Version) @ Yahoo! Video

EEG normal!

Juliette had her EEG on Monday morning Aug 9th. The procedure was extremely difficult. We had to hold her arms while she layed down on a bed while the nurses prepped her for the EEG, marking her head with a pen or marker to indicate where the discs needed to be. It felt like an eternity before they finally got her hooked up and Juliette was so tired from all the struggling and crying she became calm after a while. I was able to crawl into bed with her and snuggle to help comfort her. Out of frustration or anger she managed to give a few slaps to mommy's face. I felt so guilty it was out of the question to try and discipline her after all we put her through. We were able to get the results back later that morning ...NORMAL! A huge relief for mommy and daddy. We are so incredibly grateful and thankful for that!

Next steps... get a second opinion on the ASD diagnosis and continue with physical therapy (although Early Intervention Services do not seem to think its necessary nor do they believe she has low tone) and speech therapy. Juliette will start speech therapy on Sept 2nd. Lately I've been feeling 100% confident things will be OK with our little princess. Over the past few weeks Juliette has shown so much progress in speech (and she hasn't even started therapy yet). Everyday, several times a day, she points to me and says "Mama". Its as if the flood gates of speech are beginning to open up for her. Today Daddy shared an ice cream with Juliette and when the last piece of the cone went into Daddy's mouth Juliette raised her hands in the air and screamed "ALL GONE"! Today, the first time ever, she put 2 words together. Daddy and I couldn't be more pleased.