Monday, August 31, 2009

Meet Rosco....

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Rosco is a 6 month old black pug that has kept our family entertained this past week. Elijah loves running around with him. The twins are still adjusting and sometimes they like him, sometimes they don't. Tom's mom and dad and his brother each got a pug last month and my kids have loved them so much we had to add one to our family too!!

Wednesday, August 26, 2009

You Tube Video of twins with Down Syndrome

A fellow blogger friend Maggie from Take a Walk on the Happy Side: Down Syndrome Awareness, had a reply to one of her recent posts that was very interesting to me and I wanted to share it with anyone else who may be interested. Maggie is one of the few people I have found online who also has identical twins both with Down Syndrome. If you are a reader of my blog and you know of any other people out there that have twins both with Down Syndrome and you could share their blog with me please do, we are so very rare, and its encouraging to find others who may be traveling the same path.


Boy VS Swing

EQUALS= "Shiner"
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Preschool Outing 2009

Yesterday was such a beautiful day for a playdate. We went to a local playground called Spider Lake (and no there is no lake there) and met with the IU Preschool teachers and some of the families attending this year. The kids enjoyed bubbles, cupcakes, and of course playing on the play ground. I have been going through some totes of clothing to get ready for the upcoming school year and I found the cuteset outfits for the boys. Sadly I have no recollection as to who gave them to me, but I LOVE THEM!!! The boys looked so adorable as always and I had to share them with you.



They have a very busy year ahead of them. My other three children where no where near this busy as a three or four year old. They will attend IU preschool on Tuesday and Friday mornings. Here they will receive their speech therapy, occupational therapy, and physical therapy and well as learning to get along with others besides family members. Then on Wednesdays and Thursdays they will attend a different preschool called Stepping Stones. This is a program for children with autism. Here they do lots of activities that deal with sensory issues and socialization. They started this last fall and seem to enjoy it very well.

So for just being a three year old, they goto work four days a week now :) I'm so proud of my little men.

Saturday, August 22, 2009

Cell Phone vs. Bible

Cell phone vs. Bible

Ever wonder what would happen if we treated our Bible like we treat
our cell phone?

What if we carried it around in our purses or pockets?

What if we flipped through it several time a day?

What if we turned back to go get it if we forgot it?

What if we used it to receive messages from the text?

What if we treated it like we couldn't live without it?

What if we gave it to kids as gifts?

What if we used it when we traveled?

What if we used it in case of emergency?

This is something to make you go....hmm...where is my Bible?

Oh, and one more thing.
Unlike our cell phone, we don't have to worry about our Bible being
disconnected because Jesus already paid the bill.

Makes you stop and think 'where are my priorities? And no dropped calls!

Thursday, August 20, 2009

EWWWWWW Take II

I just read a comment from another fellow blogger with the most adorable little one. It had me laughing so much I had to share. I went from complete terror on what I was going to do next to laughing and getting great ideas on how to use up my neon band-aids that the other kids do not want to wear. Now this lady is talented at getting her emotions out on her blog. Absolutely well written, very funny, AND you made me feel ALOT better that this happened to someone else.

Read This!!!::

http://lcgrace.blogspot.com/2009/03/dont-panicdont-panic.html

Thank you :)

EWWWWWWW

I am so grossed out right now. I just went and changed a poopy diaper on Isaac. And NO that is not what grossed me out thats a daily occurance times two, I'm just used to that by now. Anyway, yesterday was the first day I let Isaac's tummy go without a bandage on it. It is healing up rather nicely and has a scab on it. So I thought I'd go ahead and leave it unbandaged to get some air. I'm changing his diaper when a string glistens in the sunlight. I was like OH there's a hair stuck to his scab. I gently tug at it to see if I can remove it and OOOOOOHHHH My goodness!!!! Its a stictch. The area begins bleeding and I'm freaking out all over again.. Geez. Someday's this doctoring stuff it even to much for me.. Its not bleeding badly, just a speck of blood but now I'm freaked out to ever pull anything from a scab again.



UGH!!!

Thursday, August 13, 2009

It's Sweet Corn Season!!!

One of the many many benefits of us being Hanzely's is that we live on a very large family farm. Tom's uncle has 14 greenhouses here in which he grows annuals, hanging baskets, and some vegetables to sell to retail stores in the area. Tom's dad has a retail nursery where they sell alot of those plants and now its sweet corn time. We have approximately 12 acres of sweet corn they grow and sell at the store. I always say one of the reasons I married into this family was for their sweet corn!!! (Tom, your the best reason!!) The corn is amazing and we don't get sick of it at all. We eat corn several times a week through August and part of September. Here are a few photos from this week, the kids ALL love eating corn on the cob.

Camille's getting the butter going:
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Elijah's getting down to business:
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Caleb feeding himself, he was actually much more interested in the ham tonight:
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Isaac enjoying his corn:
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And Tristin was late joining us for dinner because she has been helping PaPa sell the corn in at the store each day. She's getting good a ringing up sales and customer service, I'm so proud of her for doing such a big girl job. She's 11 and this is her 3rd year working corn season. Here she is being goofy. I told her I wanted her picture for the blog and this is what she gave me:
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FYI, Caleb and Isaac are just starting to have plates on their high chair trays for their meals. They mostly just feed themselves finger foods and eat off the tray directly. Actually what you did not see in the photo was Tom and I holding the plates down. If we were to leave them on the tray and look away for a second they would fling them across the room. There have been many a mess we've cleaned up because we thought they were going to do it right this time. We are working very hard on this. They will be 4 in October and I am so ready to have them self-feed. They're getting there, but they have a long way to go yet. I'm proud of them for what they've done so far, but its time to kick it up a notch boys...LOL

Tuesday, August 11, 2009

Eunice Kennedy Shriver (1921-2009)‏

Special Olympics mourns the loss of Eunice Kennedy Shriver.

Very sad to hear of her passing, she was a great advocate for our children

Saturday, August 8, 2009

I DID IT!!!! Here's my 100th Post

How ironic that this falls on my Birthday!!! This makes me happy that I have stuck to blogging and will continue to do so over time. This has been a great way to share stories, photos, memories, add prayer requests, and just be able to share a part of my life with those interested. When your a SAHM sometimes it gets real boring not having that adult talk time with co-workers and friends. This has been an outlet for me to keep my sanity and to remind myself that we have a great life, a great family, and a great future waiting for us.

The kids and my mom baked me a cake yesterday while I was in Pittsburgh with Isaac. Our trip went great! The surgeon said that Isaac's wound looks great and the chances of it getting infected at this point are pretty slim. He said to keep it bandaged for another two weeks and then start applying Vitamin E oil on it daily by massaging the area to keep the scar from attaching itself to the second layer of skin which would cause the scar to "dimple" when he grows bigger.

Anyway, I recorded the children singing Happy Birthday to me last night and it was so cute. I cannot figure out how to share that on here as I recorded it on my phone, but it will be a sweet sweet memory for me. I love hearing my children sing. Its the most beautiful thing in the world, especially when they are serious about it and trying their best.

Here's my birthday wacky cake... THANKS mom and kids, it was YUMMY!!:



So for the fourteen years I have been a wife to Tom, for the past twelve years I have been a mom, for the past seven years I have been a Christian striving to learn more and more in my walk with Christ. These have truly been the most wonderful years of my 37 years here on earth, and I hope I have another 37 years to continue my journey.

Friday, August 7, 2009

Ties that Bind, Connections in the Down Syndrome Community

I have used the internet for more that 12 years now. I used it before my first daughter was born, probably more after my second daughter came along, and then probably alot less after my son Elijah came around. Three children kept me busy enough I didn't get on but a few times a week if that.

THEN my twins came. I can honestly say that I am on the computer several times each and every day. First it was for research. Researching twins, then prematurity, then Down Syndrome, then PDD Autism, and certain therapies, and many..many..many other things that go along with life with twins with Down Syndrome. The best part of all of this is the connections I have made online with several families who have been blessed with children with Down Syndrome as we have. I have found families with identical twins with DS, I have found families who have adopted multipul children with Down Syndrome, I have found families dealing with health issues as we have, I have found families who share what works for them in a specfic situation, I have found more love and support from others all over the world via the wonderful thing we call the internet. I have found my second family online. I say its sometimes sad that I have to find resources and support from people hundreds or thousands of miles away from me, let alone from people I may never meet face to face EVER. Yet we still have the common connection that makes us treat each other with respect and love through our cyber chat rooms.

A great project one mom put together is called the T21 Traveling Afghan Project. Its a great idea and I enjoy following this project as it goes one. Here is a bit of information about them taken from their blog:

There is a very special blanket making it's way from one family to another all over the world.

The common tie? Down syndrome.

Each family who receives the afghan for one week has a member with T21.

They get the blanket, take photos with their family and pass the blanket (and an accompaning journal) on to the next recipient.

One blanket. Fifty US states. Many countries. Hundreds of families. One common thread!

If you have never heard of this project, I'd encourage you to check out the stories, see the happy faces, and share in the excitment of a small afghan that will bring joy to so many families knowing that we are all in this together, no matter where we live, no matter what our race or gender, how much money we make, what our beliefs or outlook on life is, we all are bonded by Down Syndrome. It's simply a true blessing from God above. (In my case, I've been doubly blessed!!) Those who aren't here sometimes just don't understand.....

Wednesday, August 5, 2009

Blogging for Bliss Blog Party

I read a blog post today on one of my favorite blogs to follow, Take a Walk on the Happy Side;

Today in celebration of the publication of Tara Frey's book, Blogging For Bliss, Artsty Mama is hosting a blog party. We are posting why we blog, how we came to blog, or why we dare to blog. So here's my take...

I originally started because I thought about how nice it would be to keep my family informed about things going one here in our crazy abode. To share stories, photos, videos, and our hectic schedules with everyone. This has been accomplished and I have a few family members visiting the site often to find out how the kids are and what we've been upto.

As I began expanding my reading of blogs, I realized that it would be a great way to share our story with other people who have been blessed to raise a child with Down Syndrome. Then there are those who know nothing of Down Syndrome but want to know, so this could be a bit of an informative/advocacy blog. Then there are those who just found out they are expecting or just had a child with Down Syndrome and they want to relate to someone who's been there. Then there are those who are just curious because they see someone with identical twins who both have Down Syndrome and PDD Autism and they want to know how we do it. So this became a project of mine to spread the word about how we've been doubly blessed to receive these precious children and the silly, sad, and serious stories that occur in our lives.

I know that everyone's journey is different yet so much of it is the same. I have yet to find alot of people who have identical twins with Down Syndrome. That too was part of my mission with this page. For me to RELATE with others, but our numbers are very small indeed. We were told three years ago from the Down Syndrome Clinic in Pittsburgh that we are only the fourth set of identical twins with Down Syndrome that they have heard of in 20+ years. From my searching online, its not a common thing at all. With us having a dual diagnosis, that makes us even rarer, so when I say my boys are 1 in a million, I Mean IT!!

Back to why I'm blogging. If I can just touch one person with our story my efforts have been well worth it. I will never say I know or understand everything there is about Down Syndrome, about raising twins, about raising typical children, about being a wife, about being a mother, sister, daughter, aunt.... but one thing that I do understand is that God had a specific reason to bless Tom and I with these five beautiful children, two of which have disabilities and I am here to enjoy the ride and anxiously await what more our future brings. All Glory to God!!

Saturday, August 1, 2009

Isaac's Post-Op Report

Surgery was Wednesday..

Thursday, Isaac was acting just like his own self, into everything, running around, falling down, getting back up and doing it all over again. I was surprised at how well he was doing. I did give him pain medicine morning, afternoon, and night. Maybe more for me..than him. He must have very high pain tolerance as he only got fussy a few time throughout the day. His TSS came and worked with him for 5 hours this morning, ate lunch, napped, got up and continued with his normal routine. Then he went to grandma and papa's so we could head out to a sign language class being given by our local Arc branch, and then home to bed. It was a rather good day.

Friday, I had decided to send Caleb to Stepping Stones (the twin's preschool for autistic children) without Isaac today. I was afraid that Isaac may get bumped or fall or something and hurt his tummy. So me and three kids were ready to head out the door and I started to get Isaac ready to hit the mall with me, Camille and Elijah. As I was changing his diaper I decided to remove his dressing from the surgery as it looked a little wet from drainage or something. We were allowed to removed it today. So I started to take off the corner and immediately sensed something was WRONG!! I incision was open. I was so scared I couldn't even continue to remove the bandage. I tried to put it back on and called the pediatrician to tell them I was coming right over after I dropped of Caleb. As soon as I dropped off Caleb to school the phone rang and it was the pediatricains office suggesting I call Children's and see where I should go, their office or the ER. They suggested I start at pediatrican's office. Once there, they removed the rest of the bandages and cleaned out wound and tried to put steri strips on the close it. No Go!! Off to Children's we go. The surgeon there explained to us that once you leave the OR which is a steril environment and have something like this happen we cannot close the wound back up because there would be to much bateria there and the possibility of infection was to great. So they taught us how to pack the wound, wet gauze, then dry gauze and tape. We have to change this three times a day and will go back to see him again next week. This will take two to three weeks to heal up. In that time there will be no baths, no swimming, and no rough housing... OH GEEZ. Caleb is in the tub as I'm typing this and its killing Isaac. Tom has to keep the door shut to the bathroom to keep Isaac out. Poor Guy.

Here is two photos I took tonight when we changed the bandages. It doesn't look as bad in the photos as it does in real life. Please keep him in your prayers that this heals up without infection and the scar will not be to bad. This is the whole reason for this scar revision surgery he had, to repair an ugly scar... :(

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and you can see its not affecting him that much:
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