Wednesday, October 29

What works for us Wednesday

Teenagers that truely care for each member of their family. Nate took these photos of Hannah with her horse Mack.

Hannah loves horses. Absolutely without a doubt loves horses. And Nate is a gifted photographer at 13.

Best of all, I am one lucky mamma to have raised them. This is what works for us, lots of care for one another.

Monday, October 27

What are the odds?

We have been asked from time to time about the chances/odds of having fraternal twin boys with one of them having Down syndrome.

Because it isn't very common, we belong to an online "multiples with Down syndrome group" to gain emotional support and learn 'words of wisdom' from other families. It is an amazing source of information. Right now, the group is slightly over 200 members worldwide. There are stories of going to school, going to work, riding a bike, reading, learning computers, etc.

One of the dad's who has twins both with Ds came up with the statistic of 1 in 80,000! The chances of having identicals both with Ds is 12 in every 4 million. The odds of having fraternal twins both with Down syndrome occurs once every 16 years! We are lucky enough to meet a set of those locally and their smiles FILL a room with joy.

If you have multiples and one (or more) has Down syndrome, you could learn or be encouraged by this group. It's in Yahoo groups. Come join us!

Sunday, October 26

Fall weekend highlights

Mom and dad took us to our first fall carnival at church. Mommy had heard it was really cool and it was. Liam and I dressed up as chickens. We thought it was silly and wanted the costumes OFF.

Liam liked being "on" or "in" the games. Standing in line was for patient kids. This game had a little froggy catapult.

Pastor Dick helped Liam with his golf shot. Mommy got teary eyed thinking it was two short years ago that our church family was praying for these two 'chickens' to come safely into our lives.

Our church was decorated with hay bales and pumpkins and lights. Pretty cool!

Daddy helped me in the game of fishing out a duckie.

Liam loved the fishing game too!

The carnival

Our evening ended the same way that it started.... with our cousins. We enjoyed their football games today and we were lucky enough to end our day together at a "haunted barn" in the county. Eeeeks! Lots of fun. Thanks Mack and Gabe.

Tuesday, October 21

What 'works for us' Wednesday

I found this quote from a book and it is perfect for the time of year and for all that many of us are experiencing. It "works for us", so I wanted to share.

"Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself that you tasted as many as you could". Louise Erdrich "The Painted Drum" (HarperCollins, 2005).

October is Down syndrome awarness month

Parenting magazine has a wonderful gallery of photos of kids that happen to have Ds. Check out this mr handsome (the photo quality isn't great, but you can tell who he is):

This photo was taken at my cousin Sondra's home, which our family really enjoyed spending time with!

Enjoy all the photos. I love looking at them (over and over again).

Also, as far as getting our faces and stories into the communities in the spirit of inclusion, our local DsO has a beautiful 2009 calendar for sale featuring our children with Ds and their families. It's $10 and I can mail one too ya! It's a wonderful fundraiser, but more importantly it shows our kids as just kids.

Monday, October 20

Pumpkin' patch

All six of us enjoyed the pumpkin patch this weekend! The weather was wonderful.

Hannah and Nate took Tommy for a wheelbarrow ride, wheeee.

And of course Liam got his turn.

Nate was the most 'perticular pumpkin picker' in our family. But after we found just the perfect ones, daddy took a picture of a tired mommy. Somehow, and I'm VERY open for comments on this, Tommy weighs more than any kid I have ever carried. My posture and back aches are getting worse! Help me. We have backpacks for the twins, but often it takes up to 20 mins to 'saddle them up'. I'm thinking of getting a sling to 'wear' Tommy. But at 26 pounds now, I'm not sure if most can handle that. Often we are in places that our strollers don't work and I need to sherpa him around. Ideas? It must be something easy :)

Wednesday, October 15

"What works for us" Wednesdays

The internet.

It is probably the strongest form of "Parent to Parent" that I have EVER experienced.

I have learned from families so similar to mine. And would never have been able to learn their 'pearls of wisdom' would it not have been for the internet. I have been learned that there are many families of multiples where one is enhanced with Ds. If you are similar to us (twins or triplets where one or all of the kids have Ds) Yahoo Groups has a wonderful support group with all kinds of great ideas. I don't have enough time to check the group messages so I signed up for emails that consolidate one week of postings into one email. I simply scan the email topics (located within the email) and pick out the ones that I would gain more knowledge from. Yahoo Groups also has a Hirschsprung's Disease group which I do the same for. There is a gentleman in that group that is in his 50's with HD, and boy howdy does he share a wealth of information with all of us newbies.

I love to read others blogs. I don't often post comments just because someone is either on my lap (and therefore my free hand is running the mouse to navigate) or I'm checking their blog on my work break! :) My only wish is that more people would Blog. There is a special friend of ours in Arizona now that I wish would blog. So, if you are thinking you can fit it into your daily life and were wondering if you should..... yes, you need to blog. We all have so much to share with each other and it's a great way to preserve our daily memories.

We also research diagnosis and therapy options on the internet. This I have to limit to a minimum. There is no current research. I simply trust God and know that he is placing skilled people in our life at the right moments to help us. But, every now and then I do sneak a quick 'google' in on a topic of current struggles.

The last benefit of the internet has been to reconcile our insurance explanation of benefits (EOBs). With two forms of insurance (plus Medicaid for Tommy) and a family of SIX, we find it necessary to reconcile who has paid what, and why do we still need to pay something. No more paper EOBs!! You can choose (with most insurance companies) to set up an online account and review all the EOBs that way.

That my friends, is what works for us Wednesday..... the internet.

Tuesday, October 14

A fun day

When we got up this morning we got to spend time with two ladies from the Speech place. They come to our house and show mommy and us more about 'pretalking' stuff. We used our vibrators in our mouths, made funny faces at each other and played on the cushions of the couch (mommy took them off the couch so we could play before they came). Turns out my brother said "Boom" and "Weee" and made lots of vowel sounds!
I showed off my honey bear sippining. They thought it looked really good so mommy is going to practice more with me. Lots of practice. And then.... maybe another swallow study.
We found the cat. That's her, she is white. We like talking to her. We just pat at her... but pretty soon.... we are going to pick her up. Mommy just knows we are going to plot to do something with the cat.
Liam LOVES to rough house with daddy. Turns out this is when he says alot of things and signs "more". Go daddy and Liam!
Our day ended with Miss OT coming to our house and working with me. She played with a very heavy ball. We are trying to strengthen my 'core' .... if I could only start pilates :)

I like to stand up when I'm moving my cars around on the floor. It's kinda a weird picture of me in a half way position (mommy said some naughty words about her camera). But we wanted to include the picture so we can remember what I looked like when I was almost two years old and learning how to stand up and take some steps by myself.

We had a fun day. What did you do today?

Saturday, October 11

And then a little bear entered the home...

Not "Goldilocks and the three bears" but a little bear that has made a huge impact on my life. See, mommy puts 3 ounces (half of my feeding) into this lil' bear along with a teaspoon of ThickIt, and then she squeezes the bear and the milk comes thru the straw into my mouth. Mmmm.

The straw is placed in the middle of my tongue. My lips are nicely closed around the straw (most of the time). It gets a little soggy around the edges, but not too bad.

I have been drinking half of most of my feedings thru my mouth this week. Not thru my belly plug. HUGE step in the right direction.

We have a new feeding therapist and will be excited to show her next week. Things were just a little bit loud last week in our house so we couldn't show off this new talent. Our new therapist is really nice (so was our last one too), we have been blessed with very talented and patient people in our therapy paths.

Thursday, October 9

Please pray for two sweet little girls

Please pray for a local family of twins that are facing palliative care for their girls. These absolutely beautiful year old girls have an amazing mom and dad that have been thru so much this year. I thought if more of us could meditate or pray (whatever you do best) for them, they might feel comfort knowing. It is with such a heavy heart that I write and ask for you to think of them, as things are changing so quickly and unexpectantly. Instead of posting a comment here, please spend the time thinking of them.

Wednesday, October 8

"What works for us" - Wednesday

Each Wednesday I'm trying to post "what works for us". Although every family is different, it seems alot of us share commonalities and easily learn from 'helpful hints'.

Today's topic is taking care of YOU. Not your kiddo with special healthcare needs. Just taking care of you. About half of you are falling off your chair right now because you know how badly I take care of myself. But, I have turned over a new leaf and want to share it.

This week is National Breast Cancer Awarness. During my physical exam this year the doctor handed me that mamogram order and said "this is the single most important part of our hour together today". So, if you are like me and had been putting off those lab orders from your last physical exam, wait no longer, get 'r done!

Take a hike! Or a walk. 20 minutes in the sunlight even on a cloudy day provide enough Vitamin D for you to be healthy. Plus you get the benefit of great excercise and beautiful fall leaves.

Meditate or pray or however you find inner peace. Personally, I have been spending at least 30 minutes a day praying. It's hard to carve that peace of time from the day, but the benefits have been tremendous.

Let's stay healthy together!

Sunday, October 5

And the unfortunate grande finale to the Buddy Walk....

Hannah was taken to the hospital for a bad tummy ache..... make that an emergent appendix surgery. Yep. She was hurting soooooooo bad during the buddy walk. For all of you that saw her with teary eyes, yes she was fighting alot of pain that came on pretty quickly.

And after five hours at the dr clinic, then the er...... she got that rascally appendix out at 8pm. We are so thankful that Hannah got to the doctor and things happened correctly before it burst.

The surgeon was AWESOME. And even gave her a litte pink stuffed kitty cat with a bandaid over it's appendix spot.

Hang in there big sister! We sure do love ya.

Buddy walk 2008

Oh we had fun. It was a beautiful day. Most of our family walked with us!

Team Tommy's Tigers had face paint, ears and lots of fun lil' signs about me!

We walked along the creek

Both of my grandmas walked with us along with grandpa Bill. My great aunite Elizabeth. Nicole and Syndney (drove up from Portland!). Auntie Tami and cousin Andrew. Aunt Debbie with cousins Mac, Gabe, Owen and Madison. And my sissy Hannah and Nate. Whew! There was a whole mess of us.

I ate jelly and peanut butter sandwich, I was a hungry tiger :) Thanks to everyone for making our second Buddy Walk fun.

Tommy Adventures