Tuesday, October 27, 2009

She just won't quit!

What you SHOULD take away from this picture is Marissa is standing, without support from me, only slightly leaning on her toy. That's right, standing. Nope, the child still hasn't crawled an inch, except for the army crawl, and she was standing. WAY COOL!

Then, enter sign language. I highlighted her use of "mama" and "eat" just a couple of days. Although she still needs prompts with each of these, it's progress. I don't want to get too excited, but it seems like things are starting to click. One thing I try to do is to let her know when we are finished with a certain activity. No one likes to be wisked away from something they are enjoying without an explanation. So, I try to give her a heads up that such and such is "all done", I say it and sign it. Today, she told me...check it out...


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Sunday, October 25, 2009

Sign Language

Although we've been having some ups and downs with drinking from a cup, I'm happy to report that Marissa is successfully signing "mama" and "eat". She's also blowing kissing and waving hi and bye. It takes her a little bit of time to think about each, but 70% of the time she'll get it as long as you are patient.

I've been using sign language incidentally with Marissa since she was a newborn. More so, in the last couple of months I've been using modeling procedures and hand over hand techniques to show her exactly what I'm asking her to do. Although mama, eat, and blowing kisses are all closely related, it appears that she is distinguishing between the three with variations in the movements of her fingers or placement on her face.

THIS IS HUGE for her! Marissa is now 13 months old. Im unsure what the data is for typical kids and sign language, but I think it's huge that my little girl, who has Down Syndrome, knows 3 words. She may not verbalize them for sometime, but I'll take what I can get.

This is proof positive that with a little hard work, patience, and dedication Marissa did it. She may not even realize how great her accomplishment is, but I do and I'm so very, very proud of her.

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Thursday, October 22, 2009

Big Girl Cups

I've spent well over $100 on a variety of cups, countless hours have been put into drinking from a cup with a spout, without, a straw, open mouth...you name it we've tried it.

After 4 months of fighting with the insurance company we were finally approved to receive speech/feeding therapy. Apparently our lovely insurance doesn't think kids should get speech therapy until they are 18 months or older. That's a whole other issue though.

Anyway, I met with the speech path today. She observed Marissa on Tuesday and Thursday (today) in order to assess her skill level. She recommended that we try the Inf-trainer Cup. In fact, she said she's never had a kid be unsuccessful with the infa-trainer. So, I'll be placing my order in the next day or so (once I do some price shopping). I just wanted to pass along that we are, maybe, making some progress.

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Tuesday, October 20, 2009


So I've had the opportunity to breastfeed Marissa since she was a newborn baby. This is something I had wanted to do since I was pregnant with her. From the moment the "presented" her to me, she latched right away. Then, came the weight struggles and the need to introduce bottles with formula to increase her caloric intake. I cried the first time we had to give her the bottle. I took lots of data on Marissa's feedings. Every other feed was a bottle, then breast, bottle, then breast. All of her bottles (well, almost all) were pumped breast milk with formula added, the amount was determined by her nutritionist. At 4 months old, Marissa had her heart surgery and at around 6 months we were given the okay that Marissa no longer needed the extra calories from the formula. I was LIBERATED from bottles, pumping, taking data, and enforcing such a rigid feeding schedule.

Now, at 13 months I'm wishing we never would've taken away the bottle. Who knew that she'd forget how to use a bottle! And who knew that she wouldn't get the concept of drinking from a cup?!? We've been working on drinking from a cup since Marissa was about 8 months old. I know she'll get it eventually, but I'm ready to be liberated from breastfeeding too.

I consistently ask around for advice and the #1 response is that I should have someone take over the feeds when she gets unmanageable. Well, it's just me because Bradley's deployed right now and Marissa and I just have to work through this weening business. We did great last week, but this week she seems to be pushing the envelope. I think she knows I'll eventually crack. I know breast is best, but I'm just ready to be done. But seriously, how can I say no to this....?


Any suggestions would be WONDERFUL!

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Friday, October 16, 2009

My Amazing Little Girl


Marissa has been learning a lot lately. I put together a little video to showcase some of her accomplishments. Please take a couple minutes to celebrate her amazing accomplishments with us.

Saturday, October 10, 2009

Ohio trip

Marissa and I are still on the road. We spent 1 week in Ohio and we are in Michigan right now. It's been a busy couple weeks, so I'm just a little behind the 8 ball on blogging about our days. Today I'll talk about Ohio and then in the next couple days we talk about Michigan. The BIG event of Ohio was the 1 year princess party for little Marissa. She had so much fun with everyone visiting her, hugging her, and just loving on her. Especially her Great Grandma...

She had a little smash cake. She wasn't too sure about it, but she handled it like a champ.

And of course, she loved opening all her presents and being a pretty little princess.

We even had time to visit with some very special friends that we met just under a year ago, while we were at the Cleveland Clinic for Marissa's heart surgery we meet the Rees family, whose little miracle had been there for far too long and had far too many surgeries. Less than a year later, we met up with Kim Rees and her family for an afternoon hayride and coffee at McDonald's playland. It was such a great afternoon and Marissa just loved having another baby to look at. I seem to think Marissa could learn some great verbal skills from Lily as she's quite the talker! Makes me sad we don't live closer to "home" though.

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Thank you to everyone for making this auction a HUGE success! We had over 50 items to bid on and all our items found very nice homes throughout a variety of states. The grand total raised was $1900 for Marissa's positional helmet therapy, and that's just from the auction. Marissa's Marchers raised an additional $1500 for the West Michigan Buddy Walk and $630.00 raised for the Triangle Down Syndrome Network.

A very special thank you to Jennifer Goodell, Rebbecca Heath (mom), Aunt Callie, Julie Rinker, and Callie for putting this all together and making it all such a wonderful success. Without your hard work and dedication none of this would have been possible. Thank you, from the very bottom of our hearts for all the you each did.

Thank you to all of you that donated items, time, or money towards our cause. We hope to see you all again next year when all money raised will go directly towards a local Down Syndrome Chapter.

Thank you to everyone that came out for the West Michigan Buddy Walk. You have all touched my heart knowing how much you love Marissa and our family. Words, truly can't express, the gratitude I have for each of you publicly standing up for Marissa and walking to raise awareness and acceptance of little Marissa and so many others with that extra special chromosome.

I hope that you all appreciate how unbelievably grateful, touched, and amazed we continue to be with the love that each of you have shown for Marissa. She is so blessed to know each of you and have you all in her life. May God's peace and blessings be upon you and your family and continue to know how very thankful we truly feel for your love, kindness, and support.

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Wednesday, October 7, 2009

Silent Auction Items

There are about 50 different baskets available for Marissa's Mixer. Look in the right hand column of the blog archive at Marissa's Blog for October and September for a complete list of items available for bidding. The following is just a sample of the items available in the silent auction:

365 Dish A Day Cookbook

Toddler Toy Set

Halloween Candy & Wreath

Pedicure Set

Trendy Fall Hobo Bag

Golf Set

Night at Home

Marissa Memorabilia

And of course there are a couple raffle items as well. There is a Disney Explosion and Scrapbooking Basket available as raffle items. Simply click on the link for each item and donate anywhere from $1.00 or more to be entered into the raffle. Each entry is $1.00.

Any out of state winners will receive their items via Priority Mail.

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Monday, October 5, 2009

Proper Language Guide

Proper Language Guide

The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome).

An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.

Encourage people to use people-first language. "The person with Down syndrome", not "the Down syndrome person." A person with Down syndrome is not "a Downs".

Words can create barriers. Recognize that a child is "a child with Down syndrome," or that an adult is "an adult with Down syndrome." Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.

It is important to use the correct terminology. A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by."

Each person has his/her own unique strengths, capabilities and talents. Try not to use the clich├ęs that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that "all people with Down syndrome are the same."

Here are some basic guidelines for using People First Language:

1. Put people first, not their disability
* A "person with a disability", not a "disabled person"
* A "child with autism", not an "autistic child"
2. Use emotionally neutral expressions
* A person "with" cerebral palsy, not "afflicted with" cerebral palsy
* An individual who had a stroke, not a stroke "victim"
* A person "has" Down syndrome, not "suffers from" Down syndrome
3. Emphasize abilities, not limitations
* A person "uses a wheelchair", not "wheelchair-bound"
* A child "receives special education services", not "in special ed"
4. Adopt preferred language
* A "cognitive disability" or "intellectual disability" is preferred over "mentally retarded"
* "Typically developing" or "typical" is preferred over "normal"
* "Accessible" parking space or hotel room is preferred over "handicapped"

Guidelines from the National Down Syndrome Congress

Kim R posted this information about proper language. I know I have found myself trying to educate people about a better approach. Essentially, it comes down to putting the person (whether baby, kid, or adult) first. Recognize the person and not their disability.

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