Sunday, December 13, 2009

Tiana Turning 5


It's hard to believe that Tiana is turning 5 years old this month. It seems like only yesterday when we welcomed her into this crazy world. Well baby girl, your daddy and I look forward to spending the rest of our lives loving you, spoiling you, bragging about you and of course being in awe of you. We love you Tiana Grace!

Friday, October 23, 2009

My heart just dropped!



OK...I usually NEVER let Tiana sit in the large part of the shopping cart, especially at Costco. I have a system where I set up the front seat with padding and a cute cover so not to get germs from everyone that previously used it. I set her up with her iPod so she can watch Elmo or Signing Time while I shop. Well, this morning I only needed to get 3 items (in & out) so I hesitantly put her in the back and off we went for out first item (goldfish crackers). I had to remind Tiana that standing up was a NO NO and she had to sit down. We got to the cracker isle and as soon as I stopped, Tiana stood up; and in one continuous movement she flipped out of the cart! It felt like it happened in slow motion as I watched the entire thing happen but I couldn't get to her fast enough. All I heard was a THUD - Ugh!!!!!! I scooped her up in my arms and looked for any sign of blood or a cracked skull. I stood up with her, grabbed my purse and ran out of the store and headed straight for urgent care. She didn't cry at all after we got in the car either. 2 hours later she walked out with a huge knot on her forehead and a black eye to match. The doctor said she landed on the thickest part of her skull (forehead) and unfortunatly the left side of her face too (hence the shiner). She was a little angel the rest of the day, while I was a total wreck and feeling incompatent as a mommy! Never again will I go against my better judgement - EVER!

Thursday, October 22, 2009

Slacking!

OK, so it's been 3 months since my last post... my apologies! I've been having to deal with some other issues which I won't get into, but I'm happy to say there has been some resolve - PHEW! So here are just a few uypdates...
Imua Family Services (Rachel & Beth) decided to put together a new Ds support group for all the new families on Maui. Our first meeting was a success (September) welcoming 4 new families (Marcus, Idalia, Eden & Sylas). Being around all these beautiful angels & their families was such a blessing!


























About 2 years ago I began breaking out with this bout of eczema on my arms and other parts of my aging body, when suddenly 2 months ago it somehow mananged to land on my lower left eyelid (according to my dermo). The ointment I received burned the heck out of my eye and then about a week later it became inflamed and irritated. My regular dr informed me it was an infection and put me on a 7day oral & topical antibiotic rx. NO results after 10 days, so off to the opthamologist I went. It's not infected (it never was) so stop the antibiotics immediately and start with the steroid ointment - 48 hours later it's 95% better. I missed a week of work, but I don't miss the stares!

Tuesday, September 29, 2009

I'm "MOM"

I am no longer called "Dada"; Tiana has finally started calling me "MOM"! Not Mommy or Mama, just plain ole MOM...what a break through this has been!

Thursday, July 23, 2009

Speech Therapy Blog for Mommies


Tiana is now 4-1/2 years old and has yet to call me Mommy or Mama. I am Dada. I know she can pronounce M's however when annunciating it in a word she replaces it with a 'B' (example: Elmo is Ebo, Oma is Oba). I came across this fabulous blog called Mommy Speech Therapy and after reading about the letter M, I immediatley sat down in front of the mirror with Tiana (can't do any therapy without a mirror) and began a 20 minute session. With consistent practice, I hope to be called Mommy in the very near future.

Monday, June 22, 2009

Fathers Day at the Kealani Hotel

We decided to spend the day at the 5-star Kealani Hotel pool for the day. Tiana had so much fun in the water and Dennis got extremely sunburned but appreciated the time off of work. It was a beautiful day to be had!

Mommy & Titi

Titi's raisin toes

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Daddy & Titi

DS Awareness Bracelet




I was so excited while picking out the fun little stones and charms for the awareness bracelet I designed with the help of Sasha at the Maui Bead Shop. Tiana is spelled out on individual dangling blocks adorned with blue swarovski crystals. Her middle name Grace (after my sister & also means blessing) is stacked like blocks. I wanted to include angel wings with the appropriate blue & yellow crystals and of course a token pink one. I ordered the Ds ribbon charm and will add that on as soon as it gets here. I will wear it proudly :) click on picture for larger view

Saturday, May 30, 2009

Special Education Law


I recently attended a 2-day Wrightslaw conference right here on Maui and came away with tons of information on special education law & advocacy training. I highly recommend parents of children with special needs to attend if they are ever in your area. Thank you Peter & Pam Wright (and Autism Bridges Maui) for taking the time to further educate us!

Section 1400 - Finding and Purposes
Section 1401 - Definitions
Section 1412 - State Responsibilities ("Catchall" statute)
Section 1414(a,b,c) - Evaluations and Reevaluations
Section 1414(d) - IEPs
Section 1415 - Procedural Safeguards

Tiana Loves Showers Now


When Tiana was little (even smaller than she is now, haha) she loved her baths & showers. Then for the longest time she hated getting her hair wet because of the water on her face. She would scream like you wouldn't believe until we were out of the shower completely and then she would act as if nothing happened (SHEESH!). Well, as of recently Tiana has been loving the shower especially when I rinse her hair and the water flows down onto her face...WHAT?? I have no idea what changed it, all I know is the shower experience is a more enjoyable one! YIPPEE!!

Sunday, April 26, 2009

Welcome Prince Sylas


Congratulations to my new friends Elena & Brett. Elena gave birth to another one of God's special angels and his name is Sylas Matthew. Sylas has two siblings Sam & Sophie. Welcome to the world!

Sunday, April 19, 2009

Dolls or Hot Wheels?

So Tiana received a beautiful 'asian' doll by the name of Calin from her Auntie Lala. We have decided to rename her Kai-lan like in the cartoon 'Ni hao, Kai-lan'. She loves her stuffed animals (Elmo, doggies, bunnies) but is now trying to get used to a more realistic looking doll. Watch this video and see how she does...

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Today, daddy purchased Tiana's first Hot Wheels set and she absolutely loves it, so you tell me...dolls or hot wheels?

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Thursday, March 26, 2009

Spread the Word to End the Word

It is time to “Spread the Word to End the Word,” and on Tuesday, 31 March, events throughout the United States and around the world will make people stop and think about their hurtful and disparaging use of the word “retard.”



Sunday, March 15, 2009

Atlantoaxial Instability and Down Syndrome

On March 5th, just 17 days shy of her second birthday, Rhiannon Elizabeth Nisly, who had Down syndrome, passed away from what appeared to be a sudden illness. The autopsy showed that it was not an illness after all, Rhiannon had AAI and she died from a spinal cord injury pertaining to that. Her parents had no clue. She was over a year away from the point where they would even have her checked for AAI (Atlantoaxial Instability). And it killed her. Just like that.
Rhiannon had been sick with Croup the week prior to her passing, so when she had difficulty breathing, was lethargic and began vomiting the day prior, her parents took her to see the doctor. The doctor felt it was just caused by the coughing and congestion due to the croup/cold. No one realized that the respiratory failure was due to a spinal injury.
The standard medical protocol for children with Down syndrome states that they should get an xray to test for AAI around the age of three. It is required before stating any sports teams or equine therapy. Most surgeons will order this xray prior to any surgery involving intubation, due to the hyper-extending of the neck that is required.
One quick, inexpensive xray can show if your child with Down syndrome is amongst the 30% of children with Down syndrome that have this condition.
Rhiannon was never tested for AAI. She wasn't in the age bracket for it yet. She hadn't needed surgery with intubation. She didn't show signs of a potential problem until it was too late.
Doctors say, "Oh it's so rare. Even if they do have it, it is very unlikely it will cause any issues." According to the link above:
The primary complications result from spinal cord compression.
In most cases, signs and symptoms progress slowly. The diagnosis can be made, therefore, before the advanced stages of the disease.

Death is unusual but may occur in cases of acute decompensation as a result of respiratory arrest related to compression of the high cervical spinal cord.
Several studies have shown that serious complications are indeed rare.
Rhiannon's terrible death may be an unusual result of this condition, but it is a reminder of how important it is to keep looking for complications! Please, please make sure your child with Down syndrome is screened for AAI.

This tragic story was found on the Sunflower Stories and Life With My Special Ks blogs.

Monday, March 9, 2009

The T21 Traveling Afghan

Little Miss E is sending an afghan around the world and you can help. Little Miss E's mom is making an afghan to send to families with a child with Down syndrome. A journal will go along with the afghan. When you get the afghan, you take pictures of your child with the afghan and the pictures will be posted on the T21 Traveling Afghan page. After you spend some time with the afghan and write in the journal, you send it on to the next family. Little Miss E will provide you with their name and address via email. The sender will be responsible for shipping costs.
Want to be included? Just send an email to littlemisse21@gmail.com (subject: T21 Afghan) with the following information:
1. Name
2. Address
3. Blog url
4. Name and age of child or person with T21
5. Whether or not you would be willing to ship the afghan out of your country of residence
Don't forget to grab the button for your blog!




Monday, February 23, 2009

Stacking Cups Pro

The darn batteries ran out about 30 seconds before she finished! She refused to start over for me...another time maybe lol.

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