Time Out!

Yesterday, for the very first time, Juliette was put in "time out". She had been hitting mommy, for fun, for several weeks now and the manner in which I had been handling it was NOT hitting home for her (no pun intended). My job is to nip the bad behavior in the bud before it gets worse.

At first she thought it was funny, as if Mommy was playing a game or something but I tried to show no emotion and stay calm. I decided to use the bottom of the staircase as our timeout location. I got the idea from an episode of the Super Nanny and the family she was working with used the bottom step of the staircase as their timeout location.

I realized I could not place her in timeout, walk away, and expect her to stay put. Instead I had to stand as a barrier with my back turned away. She tried several times to escape and with my back turned it was difficult to prevent that. I decided I needed to sit her down and hold her there with one hand, with my head turned away. After a minute it no longer became "fun" to her so she started getting upset. After her 2 minutes were up I got down to her level, looked her in the eyes and told her that Mommy put her in timeout because she hit Mommy and hitting is a NO NO. I asked her to apologize but of course that wasn't going to happen because of her speech delay so I asked her for a hug instead and I told her I loved her.

I am very sure it will take close to 1000 time outs before Juliette begins to realize that a "time out" is not a game and Mommy means business.

Please give what you can!

So far we've raised $2300 for SMA research. I am asking all my family and friends to please please please give what you can. $5 $10 $20, even the smallest gift can make a BIG impact.

Wont you please help these babies. We are sooooo close in finding a cure!

http://www.firstgiving.com/juneangelbaby

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.

MRI NORMAL!

Today was Juliette's MRI. I've been dreading this day. It was definitely one of the most difficult days of my life. To watch while your child is being held down on a table, her eyes filled with fear, while the anesthesiologist places the mask over her face, she struggles for a few seconds and then she's out. I whispered into her ear before we were asked to leave the room "mommy is near".

The procedure took about an hour and then she was wheeled out into the recovery room. It took a few minutes for her to open her eyes, and when she did I scooped her up and held her in my arms. Once we got home she was wobbly, irritable and super cranky. We were told by the nurse that this was to be expected. She didn't want to be held, you could do nothing right. Luckily it only lasted for about an hour and then she was back to her usual, sweet, quirky self.

Later that afternoon we got the call from the nurse. NORMAL! Thank God for that and a huge relief. The next step, an EEG. The neurologist ordered these tests only because of the birthmark on Juliette's back. She says that birthmarks can be an indicator of a neurological disorder. I know that lots of kids have birthmarks but when you combine Juliette's symptoms, speech delay, low muscle tone and possible ASD raises a red flag. We decided to call the neurologist just to confirm if an EEG is really necessary since the MRI came back normal. Hopefully its not, but if it is, they will need Juliette to be sleep deprived for the procedure.

This means that she can get NO MORE than 4 hours sleep the night prior to the procedure. Considering she gets 11-12 hrs sleep every night, this is no easy task. Is this insane or what? Lets hope its not necessary. Pray, Pray.