Thursday, March 27

Our week in review

I wish mommy could find more time to post our updates. Here is our week in review:

Monday we enjoyed 'developmental playgroup'. Our new 9am time is wonderful and our new friends are so cool! There is another set of twins in our playgroup, GIRLS, and they are really cute! We got to play in lentils... we used shovels, our toes, and I threw the lentils in the air by the handful. We sang songs and enjoyed snack with all of our friends.

Tuesday was the first day that our new Occupational therapist came to our home for therapy. She is just as great as everyone has told us. I showed off my new skill.... CRAWLING! Yep. I crawled. And I pulled up to my knees next to the couch. Pretty cool stuff. Mommy thinks I learned to crawl just to stay away from Liam, she might be right!

Wednesday we sent big sister Hannah off to Mountain School. It's a great program located in the North Cascades (she is probably really cold right now). Hannah and her whole team of classmates went for two nights/three days to learn about sustainable communities. We are lucky that the Bellingham School District offers this enrichment activity. Brother Nate did this in 5th grade and really enjoyed it (just ask him sometime about product packaging or transportation costs of goods).

Thursday (today) we saw the nutritionist. Heavy sigh. I lost almost half a pound this month. Good grief! And mom keeps shoveling the food in me. We think that between being sick for a week (vomitting and poopies) and my new mobility of crawling.... I have lost weight. Not good. So mom is taking me back to see the nutritionist in 2 weeks and I have strict orders to EAT more. Tonight I enjoyed red potatoes, chicken, green beans and a biscuit with apricot jelly.

Tomorrow and this weekend will be spent packing. Where are we going? All six of us are heading to the sunshine of the Big Island of Hawaii. This is a trip that we never could have afforded...we were 'treated' to this wonderful vacation! We leave next Friday and mommy is just a tad bit nervous. What to pack? What to bring? We will post more later about this upcoming fiasco... I mean trip. :)

Tuesday, March 25

More Easter egg hunt pictures

Thanks to Dylan's mommy for the extra pictures! Thought everyone would enjoy these too.

Monday, March 24


We enjoyed our first Easter egg hunt! There were LOTS of eggs hidden. Liam even found a 'golden' egg which he turned in (with daddy's help) for Veggie Tales coloring book, yippee!

And guess what I did? Mom made me a plate of yummy food from all the potluck'd items.... and I ate the whole HEAPING plate. Let's see if mom can remember all that was on it --> I ate a fruit kabob of pineapple, grapes, cantalope, honeydew melon; and I ate a souffle of ham, eggs and cheese, and then I ate strawberries and then I ate some bread! YUMMY

Thanks Max and your mommy Amy for inviting us! We had fun.

On Easter we drove to Tacoma to visit grandma Dorothy, uncle Bruce, uncle Marty and cousins. And guess who met us there? Grandpa Bill and Grandma Sue! Liam and me were happy to spend the day with our two grandmas and our grandpa!

Mommy has two traveling highchairs now. So she lines us up, just like home and we enjoy our yummies.

Uncle Bruce and I had fun. Grandma Sue and I played with a rattle.

Thanks to everyone for a very fun Easter weekend.

Thursday, March 20

World Down Syndrome Day 3/21

A whole day to promoting the acceptance of diversity!

The equality that we have comes from the fact that we are all unique. Any developmental delay, and Down Syndrome is but one, is just an expression of that uniqueness.

Maybe we could do this everyday of the year? :)

Blankie, hips and underwear

I really like my new blankie from my great auntie Elizabeth. She made one for Liam too! They are very soft and the ribbons around the edges are shiny. Thank you!!

My hip helpers came today. Mom had to take a 'before' and after picture. I kind of feel like a mermaid in them. The occupational therapist suggested that I wear them at night while I sleep to help my legs not flop out. I'll trust mommy to remember to slip these on at night.

And one last picture, my brother Liam with underwear on his head :) Isn't he funny. Daddy was having a good time with us boys while mommy 'tried' to sort laundry.

Monday, March 17

On your mark, get set, dye eggs!

This year was minimal interest from my kids on Easter egg coloring. Nate was interested for awhile, but not long. Hannah was focused on homework. Liam LOVED the hard boiled eggs in his mouth but didn't care for the stickers or anything else. Tommy was too involved with toys.

So mommy enjoyed coloring eggs! Here is the before and after pictures. Hope next year has more of my kids with their fingers colored! :)

Happy Easter everyone!

Developmental therapy

I am in the 9am developmental therapy group now. MUCH better for my beauty sleep (morning nap and then we go to play group). We miss our friends in the 11am, but we have more friends now!

Today Liam and I played in cornmeal. We used shovels, our hands, sifters.... and I used my toes (alot). I loved the feeling of all that cornmeal. I pushed it this way, I threw it in the air (sorry mom), I grasped it in a clenched fist, I pointed at it with my finger and of course I didn't eat any of it. Liam did though :)

We ate avocado for snack. And sang good bye. It was fun.

Thursday, March 13

Looking ahead

Since Tommy is asleep, mommy is going to grab the microphone and post something about a training she went to last week.

The training was by a national speaker who talks to different groups about inclusion and employment. His background and years of training was in sheltered workshops, supported employment, and the transition from the closing of institutions to residential/home settings.

I should have known when he said he had worked during the years of instution closings it was going to be hard to listen to. He showed articles from newpapers calling people with a disability "it" rather than "he or she". He showed an article about a group home not being allowed in a neighborhood because the adults in that home could have "he man strength" and hurt kids.

First of all, I personally believe in humanity. I believe that every person is a possibility. And most, if not all, are able to work for pay in some sort of employment setting that is appropriate for them. We may not have figured out the right job settings for everyone to be able to work (and that is our problem in communities), but for the most part if you want to work, you should be able to (wether you have a developmental disability or not).

Adults with DD have a 70% unemployment rate. We cringe when the unemployment rate hits 6 over 7% and yet for a HUGE population of us it's 70%!

I understand that the current 'system' finds patterns (intellectual disability, hypotonia, autism, spinal disorders, etc) in people and then apply labels to those patterns (Down syndrome, Autism, CP, etc) and then the label receives certain funding and the funding determines the services that you receive. Heavy sigh. That system doesn't work. The services are antiquated and not applicable to the real world.

I have worked for almost 20 years in the public sector. Alongside many people that have developmental delays or physical disabilities; and I have learned more life lessons from them, than my 'typical' coworkers. I learned to strengthen my communication skills from working alongside a blind woman and I learned to be an advocate for the ADA while working alongside a young man with DD. I wish more people could have the opportunity to learn how rich these experiences are for all.

Back to talking about services, currently, Tommy receives "birth thru 3 years old" services. And for the most part they are effectual. But that's only approximately 5% of his life span.

The next period of time he will be in the public school system from 3 thru let's say 21. That's only 25% of his life. Which is huge, but I know there are some pieces to that education and social skills that will be wonderful contributes to his skill set. I worry though that middle and high school won't be as vocation oriented as they will need to be for him.

The next phase of his life, let's say age 22 thru his 60's (or beginning of 70) is the majority of his life. He will be of working age and there are "minimal to no" services for him to help with employment. And the bigger issue for me is our communities don't want to offer employment opportunities.

There are minimal employment services because we live in communities that don't value humanity. They cannot see the rich experiences that come from working alongside someone (anyone) who happens to have DD. Disability is natural. It is part of life. It should be part of everyone's everyday life, wether you see someone at the grocery store with with DD, or in the bank, etc.

I would love to hear from those in other parts of the nation or other countries on what employment opportunities exist for adults with developmental or other disabilities.

Wednesday, March 12

Speech and Feeding therapy

Today our feeding therapist came to visit us at home. I ate strawberries, banannas and quartered grapes! I haven't really wanted to put any of the food in my hands though to feed myself. Why do that when daddy and mommy do a good job of placing food in my mouth? So our therapist put yogurt on my highchair tray and encouraged me to rub my hands in it (good and messy) and then put my hands to my mouth. I really didn't like that either, but mommy whispered that we will try more later.

Our wonderful feeding therapist A. is moving away. Big heavy sigh. We love her alot. She has seen us through our first year of feeding challenges. A NG tube for 10 months, then the Gtube, and all kinds of feeding solutions for me with my Hirschsprung's Disease. One of the biggest benefits to A. is that she is very sensitive to mommy feeling overwhelmed at times. She knows just what to say to mommy to make her feel less anxious. Bye bye A. we will miss you!

Sunday, March 9

Feeling better!

We have recovered. Whew! A week long stomach bug for all six of us. No fun! Mommy is going to catch up on her posting photos and such with this "menagerie" of thoughts.

First, it was Nate's birthday! He turned 13 on Saturday. We made him a birthday cake with fishies in water. It was yummy.

Nate and his cousins went to Super Saturday, which is an incredible 4H day long event where you get to attend 4 different enrichment activities. Nate learned how to tie fly's for fly-fishing, he learned how to fly fish, he made slime/gak, and took a class in computer animation.

Mommy wanted to post something 'goofy' about our weekly laundry pile but she wasn't laughing too hard thinking about it. See, laundry for six is no laughing matter. Here are the before and after pictures, yes this is one week of laundry. Each family member has a laundry basket. You must fetch your basket and unload it in your drawers.... and return the basket. Hannah and mommy get most of the folding duties; Colin and Nate have other duties like vacum/mopping, etc.

Sunday afternoon we got to go to yet another park. This time it's Pioneer Park here in our home town of Ferndale. I LOVED THE ROCKS.

Monday, mommy decided to skip developmental playgroup because Liam and I were still 'grumbly' in our tummies and we didn't want to chance getting any of the kids in our playgroup sick.

And that catches you up on us!

Friday, March 7

And the doctor said...

No more bugs jumping in our bellies! (to the tune of no more monkies jumping on the bed).

The nice dr said that it's a virus. No kidding. We could of told her that.

She said that switching from Pedialite to milk was too early (although it was day three when we switched, I would have thought that was time enough). So, back to Pedialite for me and Liam. She suggested a reduced fat diet which means no dairy and no fatty meats (we only eat local farm raised lean beef anyway, but okay). We had chicken noodle soup last night and I enjoyed. No vomitting yet!

We are restless though. Whiny, crying, moaning, flopping around and so mommy is stuck on the floor and she only moves when we let her! She keeps saying something about coffee and a shower, and she says we are whiny! Listen to her :)

Soon, we pray, we will be up and about again. But for another day, we are home.

Thursday, March 6

Still sick

Tommy and Liam are still sick. The vomitting continues today so we have a doctor appt this evening. Since Tommy has a Gtube it's slightly easier to keep him hydrated with Pedialite. I say "slightly" because he is still vomitting. Poor boys!

The rest of the family is better. I worked a few hours today and yesterday. Daddy went to work today. Big sister Hannah was at middle school. Big brother Nate though spent the day still recovering. Heavy sigh. This is one yukky bug. I know Braska Bear's mom agrees!

Tuesday, March 4

Happy Birthday Stephanie!

A HUGE HAPPY BIRTHDAY to Stephanie Ebert! We love ya!! Hugs and kisses!! Hope you got some yummy birthday cake :)

...and the bug continues....

Same bug. Different day. Daddy is sick now. Hannah is sick. And Nate is sick. And Liam decided he would have a repeat day of vomitting. The good news is, mommy is starting to feel better. And so am I. Mommy counted 20 poopy diapers yesterday between Liam and I. That is just about one per hour.

No playgroup this week, no occupational therapy, no feeding therapy..... nada. Just hoping this is over soon and we are all healthy again.

Guess what? Mommy was laying on the floor (I said she was really sick) but I wanted to get over closer to her.... so I went from my lovely steadfast sitting position (gee whiz I can sit for hours) to an all fours on the ground... and drumroll please, I crawled to her. Two or three crawls (she only had one eye open so I don't think she got the full effect). I crawled! Hooray!! I haven't done it again, she scared me with her reaction :)

Another biggie that daddy and mommy have noticed, I LOVE to clap my hands. Sometimes mommy sings silly songs and Liam will clap his hands when he is done. Seems she likes this, and she will sing more..... So I started clapping my hands at the end of songs too. And I clapped when mommy put a Signing Time video on. Yippee! I have a wonderful form of communication, I clap my hands.

Okay, mommy is going to lay down again. Whew! Keep us in your prayers for our health to return quickly.

Monday, March 3

Another bug

We are sick. Oh so sick. Mommy says she hasn't been this sick in years.

Liam was sick first on Saturday. Vomitting and hives. The hives were so strange that mommy and daddy took him to the ER. Turns out with viruses you sometimes get hives. Too much stress on a little body!

Then Sunday was Tommy's turn. Lots of vomitting. And then mommy just had to join the fun. And when mommy is down and unhappy.... it's not a good thing. Thank you to Daddy for staying healthy, changing ALL the diapers, feeding everyone when mommy couldn't even get her head off the pillow. And thanks to Hannah and Nate for being the world's BEST big sis and brother!

Tommy Adventures