Thursday, January 31

Adoption story

No, we are not adopting. God has given us four kids and our hands our full.

But please read the beautiful story of this family's adoption. They have adopted a 4yr old beautiful girl who happens to have Down syndrome.

http://www.urbansworld.blogspot.com/

Sunday, January 27

Snuggle with Daddy





Daddy was holding us while we watch a new DVD from the library "Sesame Street Silly Songs"..... only we had a different idea...zzzzzzz










More snow today! Although none of it seems to be sticking. Mommy decided it's too slippery for her to go to church.





Since mommy doesn't post pictures of her big kiddos very often...

Last weekend, Hannah, Nate and mommy travelled to Seattle for a memorial. Us babies were home with daddy.

They were bored in the back seat and decided to take a picture of themselves. Mommy has a weird face, Nate looks unusually serious... Hannah looks good like always! Love ya big kiddos!

Saturday, January 26

Eating


Last night mom and dad took Liam and I out for dinner. This doesn't happen too often so we really enjoyed it. We went to our favorite Mexican restaurant. Mommy said more than once that she REALLY enjoyed not having to clean dishes, the floor, the highchairs :)
We tried gwakamolee because our friend Braska Bear enjoys it and guess what..... we should have asked for two bowls! We loved it!

After eating, Liam just couldn't stay awake anymore.

Today is Saturday and here in Ferndale it has started to snow!

Mom made us a yummy lunch of vegetable soup, some cherrios to keep our fingers busy (Liam likes to feed himself, I like to throw them at the dogs), and bananna. MMMM.

Friday, January 25

Ask your doc to wash their hands!

Since I have been inpatient SO many times.... I've noticed my mom hasn't been shy about asking doctors or nurses if they have washed or gel'd. Geez, she even asked a nurse if she had checked my ng tube for placement (and the nurse hadn't) before pumping medicines in. This article proves they don't wash up! http://www.msnbc.msn.com/id/22827499

Thursday, January 24

Like's and Dislike's

Me and mom were tagged by Braska Bear to post our like's and dislike's in a meme format. Guess who's list is who's:

I like my big family...someone always comes over to pick me up, help me stand, see if I want to snack on something, bring me a toy that I couldn't reach.... and of course a quick cuddle!
I like baby signing time videos
I like ICU nurses
I like tastes that are citrus
I like sitting in my stroller and going places to look at stuff
I don't like my screaming poopies
I don't like Liam pulling my hair or pushing me over
I don't like mommy crying or laughing loudly, I cry over both!
I don't like blood draws

Here's another list (okay, you guess'd this one is mommy's):
I like taking all four of my kids to school and therapy appts daily
I like sunrises (all windows that face east MUST be drawn open in the mornings)
I like planning my garden (ordering seeds)
I like spending time with my husband (going out to dinner, no kids)
I don't like genetic counselors (separate post to come)
I don't like people that say "Oh I'm sorry..." when they see or hear Tommy has Ds
I don't like denials from insurance companies for things Tommy needs (compounded medicines for his Gtube)
I don't like the 70% unemployment rate in the DD community

Tuesday, January 22

Nutritionist visit

Among appointments last week, I saw the nutritionist. Since I have a Gtube I gotta see one of these folks. Mommy has me going to see her in Bellingham rather than traveling to Children's hospital.

I proudly gave her my week of food journaling.... and she was IMPRESSED. Whew! I have tried SO hard to be patient with mommy while she was shoving that disgusting food in my mouth. Hmmm. Actually, some of it I enjoyed. Here is a sample of two days worth:

Saturday
Breakfast:1/4 bananna smashed, oatmeal w/brown sugar (nearly 1/4 cup), 1oz milk by mouth!
Lunch: Green beans with hummus and sliced deli turkey meat (heated in the microwave to eliminate listeria bugs) all ground up in the food mill
Dinner: 1/4 of a single roast chicken breast with caesar dressing (I like the spicy stuff) and 1/2 a red potato smashed.

Sunday
Bfast: 1/4 cup oatmeal with cinnamon sugar, 1 oz milk thickened orally, 1/4 bananna
Lunch: 1/4 cup soup (spinach, noodles, carrots, tomato), 1/4 slice bread with butter, 3T mandarin oranges
Dinner:1/4 Thai chicken and rice (peas and carrots in there too), 1 oz grape juice thickened orally

Of course I also have almost 30 oz of milk thru my Gtube too. But all of the above is ORALLY. The feeding therapists are right, I am going to be a 100% orally fed kiddo. And I think I might like it.

Constipation?

That's a big word for me to try to say... so I'll let mommy tell you about my transition to whole milk.

Tommy is constipated daily now that we have transitioned over to whole milk. We mixed formula and whole milk for two weeks then switched over to milk totally. He doesn't show allergy signs, but is TERRIBLY constipated. And when you have lost 5 inches of your colon like this little trooper has.... it's important to be a daily pooper!

So, with the Miralax and Senna, the daily medications tha he has been taking for the last six months, I decided (with a few questions to the nurse practicioner) to 'up' the dosage. Do you know how hard it is to get a straight answer on the Miralax dosage?

Tommy weighs 20.5 pounds now, so using a handy dandy conversion online I calculate he is 9.3 kilos. Most of the dosage answers I get on Miralax are "0.8grams for every kg" of weight. So doing the math I calculate a dose of 7.44g of Miralax a day. And with a heaping tablespoon weighing about 17 grams... Tommy's dose would be less than half of a tablespoon. I have been disolving the Miralax in water and then putting it in his Gtube and that seems to be the best method of getting it into him.

What is Miralax? It is a solution that increases the amount of water in the intestinal tract to stimulate movement. It works well with Tommy, just needed to 'up' the dosage to the maximum recommended to help him poop! More to follow, pray for poop!

Monday, January 21

A day at home...

... not totally by my mommy's choice. I'll let her tell the story.

I'm purse--less and van--less and therefore homebound. And I was so looking forward to feeding therapy today and developmental playgroup. Ah, God had other intentions. Let's start at the end of last night.

I attended a memorial for a family friend last night at the Seattle Aquarium. Daddy stayed home with the boys. The memorial ended around 11pm and when we reached Lynnwood/Everett area I realized I had left my purse at the aquarium. This meant no keys to the van which was parked in Bellingham. Ah. Hannah, Nate and I were driven all the way home to Ferndale by a very sweet person (thank you Robert).

This morning when I called to cancel feeding therapy, our therapist "A" gently reminded me that I have a full plate and that these things happen... and perhaps we are just meant to have some rest at home today.

It was a WONDERFUL day, homebound with all four of my kids. The sunshine was here all day, although cold. Laundry got caught up (huge miracle). Dishes were done. Conversations with Hannah and Nate were at a slower pace than our usual 'hurry up'.

....And thank you daddy for driving to Seattle today to pick up the purse!
....And blessings to the Bigler family in their time of loss, Blake was an incredible kid!

My new friend


This is my new friend Alyssa. Actually she is my big sister's friend, but we can share right? We had lots of fun playing together.

Friday, January 18

Wheels

video

One of the few moments that I walk into the room and see the twins doing the same thing.

I had left them alone for a few minutes so that I could load the dishwasher. I had given them each a truck to play with. As the video shows, they turned their trucks over and examined the wheels.

As the developmental gaps widen between them, there are occasional brief moments like this of similarity.

Bean bag fun

Liam and I enjoy a new game with the bean bag chairs. Liam fluffs it up. Daddy holds me up. Then.....JUMP! Notice how daddy is holding me up? I enjoy standing now. Thanks daddy for showing me how to stand and reminding me that it's fun.
video

Monday, January 14

Shopping

Last night mommy and daddy went shopping at Costco. This is the second time in as many months that they have gone together. Last time, Hannah and Nate went also and the shopping event was a HUGE success with everyone finding their favorite foods and making life easier for lunch boxes and dinners.

This time was different. No big kids. Just mommy, daddy, me and Liam. Daddy had Liam strapped in a cart. Mommy chose to have me in a snuggly front pack because although I enjoy sitting, I tend to get a little 'tilted' after a while. Two carts, of course.

As the shopping event progressed, the carts became full of items from their list, which they had to stop often and 'regroup and compare' to their grocery list. BORING. Brother Liam got a little bored and found the sour cream. The BIG sour cream. **SPLAT** When mommy caught up with daddy all she could do was laugh. Sour cream all over the cement floor in an aisle.

After that spill got cleaned up, mommy seemed to have a little trouble pushing her big cart, so I decided to help her by reaching forward to grab the cart to push. Of course she had to hunch her back over so I could reach, but she understood that I wanted to help.

I grew tired of that, and I think she did too, so then I wanted to look at the wheels. I had to bend my body over the snuggly front to look way far down at the wheels. Mommy didn't share my passion to look at the wheels so she kept prying my head up while steering her OVERFLOWING cart.

Once she was prying my head up I noticed HUGE ceiling lights. Have I told you lately how much I love ceiling lights? I love ceiling lights. So I craned my neck around just right into mommy's armpit so I could look at the ceiling lights. She seemed to have trouble cornering the cart around aisles but she did fine.

Once at the checkstand mommy thought she had told the checker a few times that we needed to place the groceries back into TWO carts, as there were two adults to push them. But alas, there were three carts with groceries. So the nice checker person got to help push a cart to the truck!

Sunday, January 13

Hirschsprung Disease

A big title for the disease that makes digestion and pooping much harder for me. Mommy found a research study and wanted to share it with any other families affected by this. Please look at this website for more information about something that greatly affects me.

http://www.hopkinsmedicine.org/geneticmedicine/CR/Hirschsprung/WhatisHirschsprung.html

Tuesday, January 8

Five things you didn't know about my momma...

Reluctantly writing this because Max's mommy is making me (he has a really cool website: http://www.mightymaxupdate.blogspot.com/)

Five things you (probably) didn't know about me (Mommy):

1. I have considered, someday, fostering care or respite for children with special health care needs. Not now, not for a few years in fact. But someday I would like to give families or kids in foster care some of my extra lovin's and the specialty care I have become skilled in.

2. I have a 5,000 square foot garden. I enjoy being a farm girl. Growing vegetables (selecting my seeds now), raising dairy goats, acquiring more brown egg laying 'lady hens', and watching my kids and husband enjoy the little farm.

3. I'm going to be 40 this year. Oh my, I can't believe I just wrote that on the blog.

4. My favorite food is anchovy pizza. Gross huh? It's ok, I love it, no one else needs to.

5. My dream car is a convertible VW bug, 1968, blue (not baby blue, but true blue). Heavy sigh. I would LOVE that car.

Saturday, January 5

Hawks playoff game




Daddy left early for the Seahawks playoff game.
And when we dropped Nate off for cousin Willie's birthday party, Aunt Shawnee took a picture of all us in our hawks clothes. Go hawks! Enjoy the game daddy!

Get on the bus!




Aunt Debbie brought over a bus that our cousins have outgrown. It's just perfect for me and Liam!
Thank you Aunt Debbie and cousins!

Friday, January 4

Having a ball




Thank you cousin Joe for the VERY fun ball.

It moves whenever I touch it. And it makes me wanna get it! I almost forget that I'm sitting.... someday soon I think I might want to crawl after it.

Liam was asleep this morning, so I got all the toys to myself! And I had mommy and daddy to myself, lots of snuggles. Good morning!

Highchair snuggle


Mommy figured out a way to snuggle me into my highchair so I don't lean to one side anymore.

And guess what? I like eating a little more, a little longer since I feel a little more stable.

Thanks to mom, and the feeding therapist M.

Tuesday, January 1

Incredible story of Karen Gaffney

As a new parent to the world of Down Syndrome, I found this video inspiring.

http://www.msnbc.msn.com/id/21134540/vp/22295352#22396452

RSV and length of hospitalization for kiddos with DS

For anyone battling RSV, we shared this current article with the hospital staff, as Tommy's length of hospitalization was 10 days. This article sites 10 days as the median length of stay for a baby with DS and RSV. Not too many times I can say we are close to the median :)
http://pediatrics.aappublications.org/cgi/content/full/120/4/e1076

Tommy Adventures