It's Mina's World, we just live in it

2011-11-04T06:02:00.004-06:00

So hello there, folks! It's been what? Four years? Not too long. So you're probably wondering what's been happening. Well, I have since conceived and birthed another child and gotten a new diagnosis for Mina. Turns out that the tantruming for Barney wasn't just a personality thing, it was Autism. I suspected it before and had her checked out, but they had originally thought it was just the delays in DS. When I read Jenny McCarthy's books and compared her with other kiddos with DS, I realized that it was autism. And after two consecutive days with different medical professionals, my suspicions were confirmed. That was a game changer, but a blessing as now we have answers and new options to help her. Once you google the word Autism, a whole new world opens up for therapy and treatments that would otherwise be closed off to a kid with DS. It shouldn't be, but it is.

Meanwhile, we have Evangelina who is now three. She is outgoing, vivacious, and quirky. She also has hypotonia, and anxiety disorder (so far, but we'll see if it turns out to be Asbergers or OCD in the future.) She also has auditory sensitivity. She is absolutely hilarious, and Mina ADORES her!

So there in a nutshell is what has been happening. I plan on either changing the title to this blog or creating a new one. We shall see what we shall see.

2007-08-22T11:01:00.000-05:00

WHAT WOULD YOU LIKE TO SEE?

If you have a child who needs to use a picture communication system like PECS, and you could create your own set, what would you like to see available? What features are important to you? Realistic drawings or actual images? What do you find lacking in other systems? Please leave a comment and let your imagination go. I'd love to hear your opinions, as I have some issues with the system we're using now.

2007-08-20T15:00:00.000-05:00

Lighting a Candle for Gabi

Today, a sweet little angel with T21 named Gabi earned her wings tonight after complications from OHS. Please pray for her family and friends at this time for comfort, and if you feel so inclined, light a candle in her honor.

2007-07-08T20:08:00.000-05:00

Mina's First Time in the Pool

Today we took out the old pool from the garage that we had bought for Cletus. He never used it, so Jim cleaned it up, and we put Shmonk in it. She liked being in it, but she was more interested in taking in the whole environment....the water, the trees, the sun and wind. It was all just very fascinating to her. We took a bunch of shots and a video which you can view at www.dropshots.com/minasmom. There is also a video of me taking her for a walk to build up her endurance. Anyway, they both came out really cute. Here is one of the photos we took today. Please excuse my "swimwear" as I have not had a swimsuit since about 20 years ago, so I look particularly "lovely." Shmonk, on the other hand, is as adorable as ever. How DOES she do it?! Must be Daddy's side of the family!

2007-07-07T20:47:00.000-05:00

I'm "It"

I've been tagged by Miranda, Shaylee's mom. I have to answer questions with only one word.

1. Where is your cell phone? Purse
2. Relationship? married
3 Your hair? long
4 Work? Mom
5 Your sister? two
6 Your favorite things? Mina
7 Your dream last night? strange
8 Your favorite drink? coffee
9 Your dream car? Runs
10 The room you're in? living room
11 Your shoes? keds
12 Your fears? cancer
13 What do you want to be in 10 years? Zookeeper
14 Who did you hang out with this weekend? family
15 What are you not good at? high math
16 Muffins? Chocolate
17 Wish-list item? bigger home
18 Where you grew up? Illinois
19 The last thing you did? joined neighbor for walking dog
20 What are you wearing? camo cargos
21 What are you not wearing? bra (TMI)
22 Your pet? cats, dog
23 Your computer? works
24 Your life? boring, but ok
25 Your mood? moody
26 Missing? going out, school, work
27 What are you thinking about? learning Cherokee heritage
28 Your car? borrowed mini-cooper
29 Your kitchen? 50's
30 Your summer? hot
31 Your favorite color? green
32 Last time you laughed? last night
33 Last time you cried? last night while laughing
34 School? I wish!
35 Love? craft fairs
36 Tag? Michelle, Kayla's mom

2007-07-07T17:54:00.000-05:00

I Am Two Years Old, Can You Tell?

Yep, that's my girl! Our sweetie pie is not only taller and walking, but she's discovered the fine arts of temper tantrums, whining, and eating in order to stall bedtime! One day of a delayed nap / late nap, and she's now moved from a 7:30-8:00 bedtime and waking at 6:00 am to falling asleep at 9:15 pm and waking at 7:30-8:00 am. We got her back to a more reasonable 7:30 pm-8:00 pm, but she skipped her nap yesterday, so she napped until 4:00 pm today. Back to the drawing board!

As far as the therapies that we've been working on, it's been a mix between PT and ST. Mina walks, but her endurance is not good, so we've been having her take walks and we makeshifted a bench for her to sit on that forces her to place weight on her feet even when she sits down to watch the infamous Barney. We've got the abdominal binder to help support her core muscles too. All of this was recommended by her new PT who is also the main one to help out at MyGym....I think she's the head PT. Meanwhile, we have to work on cup drinking and chewing in a big way. We had her drinking better out of a cup before, but I backed off since she wasn't getting enough fluid....so back to the bottle we went. Unfortunately, it's been a real struggle with her again. She only wants to chew crunchy foods and sometimes something like a donut hole or a piece of string cheese. Otherwise she tongue mashes it or swallows the stuff immediately. So we've had to revert back to mushing up her food (oh, and she's been getting pickier lately, too.....NOT a good combo, my friends) She was chewing before too, so she's gone backwards a little bit. The other thing is, she doesn't like to try new foods much, so that has also been a challenge. I REFUSE to have a really picky eater on my hands after encountering people dealing with the issue. I guess it's not up to me, but I could use the extra help in the eating department. These things really have to be addressed by the time she gets to preschool in November.

Meanwhile she's doing really well in the hour at the daycare each week with Miss Tammy and occassionally, Miss Susan. No crying this last time except when another kid cried, and I think that's an emerging trait they call showing "empathy" so I'll take it! At MyGym this week, she just ROCKED! She did all of the gymnastics without too much complaining, and that is a huge thing because she ALWAYS cries at that stuff. So again, a major feat.

On the less aggravating front, she LOVES getting OFF the couch (and is trying to get on it) both backwards and forwards. When she tries to get up, she just giggles as I help her. And she has two ways to get down: one is turning over and facing the couch with feet first. The other is scooching forward on the couch until her legss dangle down and then swinging them until she slides off. It is TOO cute! [Oh sure, it figures! Daddy just stepped out to start the grill on his day to watch her and she starts pooping! Guess who's gonna have to clean it up! Hee hee! Oh well.....but I digress] Anyway, she has also discovered cuddling with her mommy on the rocking recliner, so for those days when it gets hard and tiring for Mommy, it's a nice change of pace. The funny thing is, I had just posted on the T21 forum how she doesn't like to cuddle or anything, and then all of a sudden she decides it's a great thing to do. Utter Bliss, ain't it moms?!

2007-06-11T21:11:00.000-05:00

CICADAS, CICADAS EVERYWHERE!!!!!

Ok, so I admit the fact that these literal "buggers" don't hurt you. But I found myself reduced to "a girl" when they were swarming around today! I got the heebie jeebies really badly while I was out strolling with Mina today. I feel really ashamed considering that last wednesday, we went out along with her speech therapist, and the therapist had no qualms about picking one up and putting it on Mina's stroller tray. Of course, my little girl could care less! She was more interested in looking around and having the wind blow her in her face while her tongue was out to taste it (the wind, that is! Tasting cicadas is more of our dog, Cletus' thing....YECH!!!) So my mother, who had no problems with insects, would be mortified to see her daughter do such a girly, girly thing as running from harmless locusts. Sigh! Sorry Mom!

Meanwhile, if you'd like to hear what we hear all of the time down our street, go to www.dropshots.com/Minasmom

2007-06-05T20:13:00.000-05:00

Lipsmackin' and realizations!

I got a video of Shmonkey asking for Barney and smacking her lips. She was doing the lip thing all day today (well, both of them actually! hee hee) If you want to see it, go to:

www.dropshots.com/Minasmom

Also, I found myself underestimating Mina's abilities? I saw her going through an older book of hers and pointing at things. It took a minute to dawn on me that the things she was pointing to were things I've pointed out to her periodically on walks or what have you. She has a "my little pony" that she just started playing with today(or rather shaking it by the hair!) and when I put in on her chair while she wasn't looking and asked her where her horse was, she turned, looked at it, and picked it up! It just amazed me as I have only referred to this toy as "horsey" a few times. She doesn't pick out animals or anything if you call them out, but obviously she figured out that it was a horse without any problem.
So....I guess I am saying that I've been shortchanging her by thinking she doesn't know certain things, and now I have to just act as though she does because she just may. DOH!!!! She IS a little smarty pants, and I just have to get that through my head and start "forgetting" she's delayed.
Bad Mommy! Bad!!!!

2007-04-11T22:49:00.000-05:00

Gorilla ObGyn

I was watching the news tonight when it was announced that a gorilla at Brookfield Zoo had undergone surgery for "female issues." As I sat there, they interviewed a doctor about the surgery, and I thought, "Gee that looks like one of the docs who took care of me during my pregnancy." I rewound the footage, and sure enough, it was Dr. Murrey, who I have to say is one very cool individual. I LOVE her! Anyway, I would have caught more, but our DVR started recording Jon Stewart and cancelled the live programming. I visited Brookfield Zoo's site and copied a snippet just for fun. I guess one of my ObGyn's is famous now! I would like to work with primates at Brookfield eventually myself, so now I know who to call :)

"Recently, Beta has experienced some uncomfortable reproductive problems that many human women can probably identify with. In the past, issues of very heavy bleeding and fibroid tumors might have required a hysterectomy to treat, but Chicago Zoological Society vets wanted to try something else. They brought in Dr. Susan Murrey from Adventist Hinsdale Hospital to try out a relatively new treatment used on humans called hydrothermal ablation. The treatment has been used for similar problems in women who were at the same stage of life as Beta. A Case Study In Caring Once again, Beta has paved the way to better care for aging animals in the zoo---when Dr. Murrey performed the surgery it was believed to be another first for the groundbreaking gorilla. Even though this was her first time working with a gorilla patient, Dr. Murrey had no problems because a gorilla’s reproductive system is so similar to a human’s. Beta recovered quickly from the non-invasive, “out-patient” surgery, seeming to have experienced only minor discomfort. Like doctors who work with humans, veterinarians are always looking for new treatments that offer the best care for their patients. As with human women, the problems that Beta experienced are not unusual in older female gorillas. As primates in zoos continue to live longer lives, care like Beta’s will not be unusual---but for now, she is one of the world’s most unique primates and CZS will work hard to keep her happy, healthy, and living the life of a star in the future. "

2007-04-11T14:31:00.000-05:00

In Mikey's Honor

Back on February 22nd, a sweet baby boy earned his angel wings. His name was Mikey. I knew of Mikey and his mom through the T21 forum I belong too. The people on that forum are my second family. I think of Mikey and his mom Danielle and their family all the time. What they went through and what they still go through on a daily basis, knowing sweet Mikey is in Heaven. One of the people from the forum, Connie, posted this beautiful song and pictures of Mikey on her blog and we were allowed to copy it as well in honor of Mikey. If any of you would like to do the same, please do! It would be wonderful seeing sweet Mikey's face all over on blogs in his honor.....This is for you Mikey!!!!!

Dancing with the Angels by Monk & Neagle

Memories surround me

But sadness has found me

I’d do anything for more time

Never before has someone meant more

And I can’t get you out of my mind

There is so much that I don’t understand

But I know

You’re dancing with the angels

Walking in new life

You’re dancing with the angels

Heaven fills your eyes

Now that you’re dancing with the angels

You had love for your family

Love for all people

Love for the Father, and Son

Your heart will be heard

In your unspoken words

Through generations to come

There is so much that I don’t understand

But I know you’re dancing with the angels…

We’re only here for such a short time

So I’m gonna stand up

Shout out And sing Hallelujah

One day I’ll see you again

2007-04-10T18:11:00.000-05:00

Heh heh heh! My daughter decided that she was going to boycott naptime today. She kept yelling, "Aaaahhhh!" in her crib, and I knew that there was no way that she was going down today. So I pulled her out and she had a great time watching Barney, eating some yogurt, drinking her milk, and banging the stacking cups together. At about 5:15, she started showing signs of fatigue....finally....so I broke out the ziti and fed her. Well, I gave her a couple of spoons of spinach after the pasta went down when all of a sudden her eyes started closing. Then the head jerked once or twice. I just dropped everything, picked her up, and within maybe a minute or so she was fast asleep in my arms. 5:45 pm and my two and a half year old is already asleep!!! I hope to God that she sleeps through the night. Otherwise we're gonna hear feet swishing and tooth grinding in the middle of the night. I gotta say, though, that she was awfully darn cute passing out in her high chair!!!

2007-04-10T18:07:00.000-05:00

I was looking at the calendar today and remembered that it is the first day of Cherokee II class (or Tsalagi). And I thought to myself, "Why not do a Cherokee word or phrase for the day" for the heck of it. So here goes:

Osiyo! Tohitsu? [Hi! How are you?] It's pronounced, "Oh see yo! Toe hee juh?" (bold for accented syllable)

I wrote it in English characters, but Cherokee is actually the first, and one of the only native languages that has its own writing system, called a syllabary. It was created by Sequoyah after he saw the white man with what he called, "talking leaves" (books.) According to what I've read, it is the only written language in the world created by just one person. Also it only took a couple of days for a person to learn. Pretty cool!

2007-04-09T21:32:00.000-05:00

Mina and I went to my sister-in-law's house for an impromptu Easter meal with Grandma, aunts, uncle, and the cousins (Daddy was running errands.) It was a shorter visit, but really nice. And of course, being a Sicilian family, we had some ziti al forno (from the Soprano's Cookbook no less!) Mina has recently discovered pasta, and I thought for sure she would dig in to the ziti. But after a couple of tastes, she started throwing it onto the floor, and it had to be picked up so that the puppy (Bazzo) wouldn't get to it. Sigh! So back to the baby food (yech!) Of course, it turns out that she was coming down with something, and it was kind of chaotic. When she got back home, Daddy started feeding her some ziti, and she was in Mina heaven....eating ziti and watching Barney
while in her Easter dress.

I got a couple of pictures of her in her dress and sweater, and I swear she looks like she's saying, "I'm not listening!" The other one is a shot of her 'do....mom was pretty proud of her hairstyling this time.

OK, I'm done now with the pictures. Needless to say, she was so beautiful. I don't know about you all, but I was never this cute when I was little. I'm sure you feel the same way about your kids. Hope you all had a wonderful Easter!

2007-04-09T21:25:00.000-05:00

After a full week of health and giddiness, I started wondering when the next round of illness or sleep problems would happen. Well, exactly one week after Mina started to feel better after the stomach flu. Turns out she's come down with massive congestion again, and even a little fever. She ended up sleeping something like 3-4 hours this afternoon, which she never does, and then didn't fall asleep until about 9pm. Mind you she started rubbing her eyes at about 7:00 pm, so whaddya do?! I knew that kids were carriers of all kinds of germs, but I didn't think that every time she went to day care FOR AN HOUR that she'd get sick again. The things you learn when you become a parent.

2007-04-09T21:12:00.000-05:00

Lazy Woman Has Figured it Out....she thinks.....

I was tagged by Rose to think about 5 things I love about being a woman (or was it feminism???) So here goes nothin'!

1) Being able to conceive, carry, and give birth to another human being. It creates a bond I never knew existed.

2) The multitude of clothing options for us. I mean let's face it....we can get away with men's style suits, but men can't get away with frilly lingerie!

3) The way we're wired to be compassionate and relational. It can be emotionally draining, but I think the human race would die off if it didn't have that social bond. Not that men can't bond, but it's just a particular strength of women, in my opinion.

4) Something Rose said hit me......just the ability to be engulfed by someone bigger's arms and be secure and safe there.

5) When you beat a guy at something a guy thinks you can't do because you're a woman, and you do it without hurting his ego.

I probably could have come up with some better things, but I am fairly out of it this evening (as an old boss would say, "just today, Julie?!"...thanks Rita!)

2007-03-12T21:02:00.000-06:00

So it's been a long time since I've posted....such a naughty girl! Anyway, I have been sick lately so I will keep tonight brief. I have been tagged by someone (ahem! Rose) to list what I like about being a woman. Well, I will think about this and post something soon. I will also be adding my thoughts about anything in general, so be prepared for posts about my hubby and the critters, native issues, personal identity, faith, politics, and of course, lots of silly stuff. And the most obvious is anything to do with Mina, my favorite topic!
Well, I'll be up to blogging soon....need some more Claritin and hot tea, then we're off!

2006-10-26T23:02:00.000-05:00

So This is Mina.......

The most unexpected and most appreciated gift of my life. Her middle name is Ahyoka, which is Cherokee for "She Brought Happiness." Little did I know how perfect that name was going to be. But it wasn't like that the day she was born. That day was a day of fear, uncertainty, and sadness because she did not fit the image of what a child would be. In fact, she was born with the exact disability my husband and I feared the most....Down Syndrome. I cannot speak for my husband, but I had never felt comfortable around the mentally disabled, so this was the ultimate test of my ability to love unconditionally.

When I became pregnant, I knew I would never terminate my pregnancy, so I did not have the testing done to check for chromosomal abnormalities. The only test we did do was a second level ultrasound to check the gender, and it indicated one weak marker for DS, a calcium deposit on the heart. That put our chances at 1 in 145. The doctor also checked the length of the nasal bone to check for a shorter one, which would indicate DS as well, but it was normal. We went home that day with a clean bill of health, so we thought, newly appreciative of the girl we found out we were going to have (my husband was hoping for a boy at the time.) Boy were we surprised when soon after the delivery we discovered that not only were we having a girl, we were having a girl with Down Syndrome. I wish I knew then what I knew now, because I would not have gone through the absolute despair I felt at having a child with this disability.

After spending the last two years of my life with this child, I've discovered that she is nothing like the stereotypes in my mind, and she is a "real" child, which I embarrassingly admit I thought she was not going to be. She is so normal it's ridiculous! Mina chases the cats and grabs their tails, laughs at us when we dance silly, throws a fit when she can't watch Barney and cruises far distances in order to eat Gerber Puffs! She loves "Itsy, Bitsy, Spider," chocolate doughnut holes, car rides (she signs 'more' when we pause in traffic!,) and meeting new kids. I'd say that is a very normal, typical American child if I do say so myself.

And yes, she does have therapy, and yes, she does take longer to do some things than kids without DS, but I would not trade a thing even if I could. She is our joy, and frankly, for us, it has now become Mina's world....We're just priviledged to be in it!