Spread the Word to End the Word

The above ads were found on Ads of the World and I found them there via Unringing the Bell. The small text on each ad reads:

Most people who would never knowingly use disparaging terms don't see a problem with saying "retard." This must change. It's just as hateful as any other slur. And for millions of people with Intellectual Disabilities, their families and friends, it hurts just as much. Please, don't use the R-word.

I think that says it all for me. Take the Pledge!

Springtime Snowfall

Relapse

Poor little Sean had a relapse this weekend. He seemed like he was feeling good on Friday, so I sent him to school. Then our area got hit with the freak blizzard Friday/Saturday. Sean didn't nap on Saturday, so he went to bed at 7 pm and slept thru till 7 am. He woke up warm to the touch, snotty and lethargic. He barely ate any breakfast and then was just super weak, unable to walk and crying constantly. I gave him a bath to try to clear out his sinuses and that didn't help. So, missed church again and instead went to the ER. Three hours later: double ear infection and upper respiratory infection diagnosis.

We came home with script for antibiotics and instructions to keep him hydrated and on pain meds. Sean slept most of the day and most of the time at the ER. Around 6 pm, he told me he wanted to go to bed. I got him to eat a little bit and have a few sips of water. Then he stuck his finger in one ear and showed me his finger tip. Yup, ruptured that ear drum. It's draining nicely now. (rolling eyes!) It's been about a year since his last tube placement. Man, these things just do not seem to last on him! The ER dr said he could see the edge of the tube in one ear, but couldn't see the other one because of the wax.

I guess we will run thru this round of antibiotics and follow up with his ENT. Sean perked up after the ear drum burst and ate, danced and played for a bit before going to bed at 9. Hopefully he will be a good boy taking his meds and feel better soon.

I have loads of snow photos to share once Doug uploads them for me. We got about 18" of snow, but huge snow drifts. Plus the city street crews did a lovely number plowing our van in and trapping it in snow. The snow was up to the driver's side window! It took Doug (and I helped a little) 5 hours to dig out the van, clear the sidewalks and a parking space on the driveway.

Pictures of the Week

For some reason, my camera is no longer reading the USB cord so I haven't been able to upload pics at home. Doug has had the joy of ferrying the memory card back in forth to the office and emailing me my photos. So, here's this week's batch of pics!

It began with Sean, passed out on the living room floor on Puke Monday.

Tuesday he was a bit better, so we had a little O.T. time involving Mommy's lifeblood coffee and some noodles. Sean was not interested in letting Ella work on her fine motor skills, so we also got to work on S.T. as he repeated "NO, Ella!"


Wednesday, I got some long-awaited fluffy mail. Custom knit shorties for Ella Bean to wear this summer. Unfortunately, I think I sized up way too big as they make excellent capri pants on her.


Sean is always trying to put on her yummy soft woolies, so he was so happy that we finally have ones that fit him. LOL

Thursday, I finished up Sean's school carnival project. The theme is Under the Sea; Doug and I made the backdrop for the putt putt game. That's a whole lotta whale!

Today I sent Sean to school and Doug delivered the whale, only to find out that due to this freak spring snow storm we are having that the carnival has been postponed until April. Oh well, now we can't procrastinate any longer. Aidan's school called and said they were closing at 1:00 today, so we are all staying tucked indoors. Crazy weather!

Oh, Google Me!

I love having a sitemeter on my blog. It's always fun to see who reads here and how they found me. I check it out a couple times a week and here's some Google gems from the past week or so.

webkinz birthday cake This is the most frequently linked search to my blog. I get more hits looking for Webkinz party ideas/cakes than any other topic.
sign language fabric I still like those bean bags and now I have a sewing machine so I should try to make them!
down syndrome weaning I am guessing weaning my child with Down syndrome will go the same as my child without Down syndrome.
4 the love of my special ks You want Renee and Renee's blog is linked on my sidebar!
obama, puke Really? What else did you find when combining these two words?
a day in the life of a sunflower story I didn't know sunflowers had a fascinating life. "Look towards the sun! Look happy!"
Down syndrome cartoon I haven't seen any cartons about Down syndrome or with Ds characters.
HELPING HANDS AWARDS WORLD DOWN SYNDROME DAY 21 MARCH 2009 Award? I didn't win any awards.
vintage cartoons I like them too.
isoimmunity Is not fun and can be scary.
down's syndrome atlanto axial instability intubation Get xrays done, please!
free sunflower story young children Yep, I have free stories for young kids and adults!
letters to get out of jury duty for stay at home moms You should breastfeed, that works in KS!

Snot, Snot, Puke, Puke, Snot, Leaky Poops, Snot

Yeah, that about sums up my week. Sean's been sick since Monday. Ella is still sick inspite of 6 days of antibiotics. I'm tired and often cranky.

Hope to get us all well again soon.

Been working on a fun project for Sean's school carnival (this Saturday!) so I will share pics of it soon. It should be finished today. I got the walls painted and we plan on ripping out carpet this weekend. So excited to get it out of here!

Sarah Palin's Ad for the Special Olympics

I saw this after the Obama gaff and thought it was a terrific ad. If you haven't seen it yet, I hope you enjoy watching it.



My favorite part:

When I first held Trigg, it was like an hourglass turned upside down. My heart filled up with love as my mind emptied itself of all the different worries and fears and concerns that I had carried while I carried him.

So well-spoken! And boy has Trigg grown! What a cute baby!

WDS Day: Parktime Fun

We wanted to get out and do something fun as a family on WDS Day, but since Ella was sick we didn't want to meet up at the Wichita Zoo with the DSSW group. Instead, we took a little trip to a local park to play for awhile.




The kids had a fabulous time and Ella got to ride in a swing for the very first time. You tell me if it looks like she enjoyed it as much as her brothers?








Right after I took the photos of the kids swinging, Doug was swinging next to Aidan and said "Look at me! Look how high I am!" Aidan turned to look at him and somehow fell out of his swing, landing on his shoulder! Immediate tears and crying. He has a nice purple bruise there, but no swelling or movement pain. Crazy! I thought for sure he broke a bone!

After Aidan recovered, the boys headed over to what we not-so-affectionately call the Slide of Death. Sean climbed up this scary thing several times by himself and just loved it! Yikes!




That was about all my mama heart could handle, so E and I went to the van so she could nurse while the boys ran around.

The meds seem to be helping and she sounds much better today, no more wheezing. She did have another cough-then-puke fit last night. She just has too much mucus moving around in there.

My Wheezy Baby

Poor E. She started wheezing yesterday afternoon due to her cold. I am really hoping the antibiotics start helping her soon. I've given her a few breathing treatments in the meantime and that seems to have helped today. We might be headed back to the Ped office tomorrow if she isn't breathing clearly.

World Down Syndrome Day, 3-21-09

This is the third year since the foundation of WDS Day and feels very critical in light of the recent Obama situation. It seems even more critical to continue to get the word out about the civil rights of the special needs population. So much has happened already this year that makes me feel like our efforts in raising awareness are just not making the progress they should. How else do you explain how a negative movie like Tropic Thunder can be nominated for an Oscar and win other awards? In spite of all the media attention that Sarah and Trigg Palin brought, people still do not get it!

I know that others before me have made huge strides. At least our children are not still put in institutions in the US like they are in other countries. At least our children have been given the right to a public education. At least our children are living healthier, longer lives thanks to medical advances. At least our children are growing into adulthood with marketable skills and gain tax-paying jobs.

But it's not enough.

I want more for my son and the rest of the special needs population. I want equality for them. I want respect for their abilities. I want happiness for them.

I don't want them treated like the butt of a joke. I don't want part of their medical diagnosis used as an insult.

When I first heard of WDS Day, I wasn't sure what I could do to help promote awareness. The first year, I organized a Dress Up for Down Syndrome Day fundraiser and was happy with the success of it. The funds I raised were used to buy copies of Gifts to give to doctors and libraries in my community. I also made a point to advocate where Sean spent his time- in his preschool. I bought a board book featuring children with Down syndrome and donated it to his class in his honor. I have continued this tradition each year. This year we sent a copy of I'm Ben and I've Got a Secret. I hope that by giving Sean and his classmates stories and images of kids like him will teach them at a young age that diversity is good.

New this year is a campaign to stop the use of the R-Word.



I regretfully admit that in my early adult years, I used this word in a joking manner amongst friends. I used it interchangeably with words like "stupid" or "dumb" in reference to things or people that bothered me. I didn't know better. It didn't occur to me how offensive this was. When Sean was born, obviously I became very sensitive to it. The light bulb was finally lit and I could see what it meant from another perspective. I find the misuse of this word utterly offensive and crude. I will most certainly raise my children not to use it or tolerate it's use.

I urge you to do the same. We have got to continue to make progress. Just as Sean struggles each day as his milestones are met with a million inchstones, this society must continue to make progress against hatred, ignorance and indifference towards differently-abled people. Let's all think before we speak. We can make a difference, one person at a time.

Obama, Bowling, Puke and Carpet

So the Internet is all a buzz today regarding Obama's remark on the Late Show last night. Rightly so, he made a huge mistake in correlating his poor bowling abilities to the Special Olympics. Our blogger friend Sarah wrote a wonderful letter to the President that sums up how many of us feel today. I am sorely disappointed in our leader and it will take more than a apology via another person to make up for it.

I have my hands full with my own domestic matters today. Eleanor's runny nose and cough caused me enough concern that I took her to the Ped today. She has her very first ear infection. :( Poor thing has just been miserable. After we got home, I sat down to nurse her, she stopped for a sec to cough and coughed so hard she threw up all over herself and me. I have officially been puked on by all of my children. I took her into the bathroom to strip us down for a quick shower and, lucky me, she had the runs too! Ugh! Aidan found it very amusing.

By the way, he is home from school today because last night he had a fever of 101.5 and has started the coughing bit as well. Give Sean a couple days and I am sure he will catch it. Joy!

In the meantime, our carpet installation got delayed a week due to a shipping set back, so I guess it's a good thing I can't get any painting done for a few days while I fight the sickies. Umm, TGIF?

Silly St. Patty's Day Fun

Last night, we had a fun time celebrating St. Patrick's Day with the kids and our niece. First, we got them jazzed up on Green Sprite.


Then it was time for some dancing in the dining room. We had the floor cleared because I've been moving stuff in there from the family room in preparation for the carpet installation.






The kid train to Dublin.


Green beer for Mom and Dad.


And Aidan requested Green Eggs and Ham for dinner. Nasty looking, but it tasted fine. Aidan said it was "Awesome!"

Painting Again & Carpet Arriving Soon!

Yay, another home reno! Last year we worked on our back room, which we use as our family room. When I posted about the project last year, I mentioned that we planned on changing out the carpet at some point. Well, now that the cat that caused most of the carpet damage is gone, we are moving forward with the new carpet. It is scheduled to installed next week, so in preparation I am painting again. I decided to go with the same golden brownish color we have in the living room. It is going to look great with the new carpet.

I started last night, so here's a work-in-progress look.


And I had to add a sleeping Ella photo. She grown so big, I'm sure we won't be using the infant car seat till one.

Don't Let the Bedbugs Bite!

A few weeks ago, Aidan expressed an interest in starting to sleep in his own bed. What prompted this, we have no idea, but we were happy to jump on the concept! His terms: as long as Sean sleeps in there with me. This meant that first we needed to get a bed for Sean to sleep in. Plus, Aidan wanted daddy to sleep in there too until they got used to it.

Saturday, we took the kids to a furniture store and bought a mattress set for Sean. I found cute bedding to go with their space themed room and got it all washed up and put together for him. We went to a church dinner party that night and Sean was exhausted by the time we got home. I carried him upstairs to put him to bed and asked him if he was ready to sleep in his big boy bed. He said yes, so we went in there and laid down together until he fell asleep. Doug and Aidan went to sleep in there later on, but by 2 a.m. both boys had climbed down off their beds to sleep with daddy on the floor. He decide that wasn't too comfortable, so he carried them back into the master bedroom to sleep on the king size bed.

Sunday night, they tried again, only this time they all went to bed at the same time and Doug tried to get the boys to fall asleep in their own beds without laying with them first. From what I could hear over the baby monitor, it didn't go so well. I took a few photos of them tucked in and pretending to fall asleep. They all moved to the king bed again before midnight.





Through the past five or so years, we've tried at different times to have the boys sleep in their own beds. We've never had much success with it and we usually put the attempts to rest after a few nights of bed shuffling. I enjoy co-sleeping with my kids, it keeps us close as a family and gives us loving time together without the kids picking fights or wrestling. Most of the time, Doug enjoys it as well. It's been harder on him since I moved out of the family bed to sleep separately with Ella because now he has both boys snug on him all night. He is feeling like he'd like more space.

I always try to keep Dr. Sears' mantra in mind, "When a need is met, it is no longer requested." We shall see how this round of sleep arrangements works out. Whether or not their need for co-sleeping has been met and they are ready to be independent. Eventually they will want their own space, so at least now we have beds for them when that time comes.

Atlantoaxial Instability and Down Syndrome

Earlier this week, I spoke with Rhiannon's cousin about a memorial gift. During our conversation, she told me that Rhiannon's death was verified to be caused by a spinal cord injury due to Atlantoaxial Instability (AAI). Rhiannon had been sick with Croup the week prior to her passing, so when she had difficulty breathing, was lethargic and began vomiting the day prior, her parents took her to see the doctor. The doctor felt it was just caused by the coughing and congestion due to the croup/cold. No one realized that the respiratory failure was due to a spinal injury.

The standard medical protocol for children with Down syndrome states that they should get an xray to test for AAI around the age of three. It is required before starting any sports teams or equine therapy. Most surgeons will order this xray prior to any surgery involving intubation, due to the hyper-extending of the neck that is required. One quick, inexpensive xray can show if your child with Down syndrome is amongst the 30% of children with Down syndrome that have this condition.

Rhiannon was never tested for AAI. She wasn't in the age bracket for it yet. She hadn't needed surgery with intubation. She didn't show signs of a potential problem until it was too late.

Doctors say, "Oh it's so rare. Even if they do have it, it is very unlikely it will cause any issues."

According to the link above:

The primary complications result from spinal cord compression.

In most cases, signs and symptoms progress slowly. The diagnosis can be made, therefore, before the advanced stages of the disease.

Death is unusual but may occur in cases of acute decompensation as a result of respiratory arrest related to compression of the high cervical spinal cord.

Several studies have shown that serious complications are indeed rare.

Rhiannon's terrible death may be an unusual result of this condition, but it is a reminder of how important it is to keep looking for complications! Please, please make sure your child with Down syndrome is screened for AAI.

Hide and Seek

"Mommy, where did those brothers hide my teether?"


"Hey! What are you monkeys doing up there?!"


"I found my teether, now I am going to tell Mom on you monkeys!"


"Oh, Mooooooooooooooooooooooom!"

In the Blink of an Eye

I haven't been sure how to write about this, words just don't seem good enough. Nothing seems to sound right when I think it through in my head. Yet, I have to talk about this and share about this little soul, gone now- far too soon.

On Thursday, March 5th, God took one of our angels on Earth back to Heaven. Just a 17 days shy of her second birthday, Rhiannon Elizabeth Nisly passed away due to a sudden illness. This beautiful little girl, with her golden blond hair and big bright eyes is gone and my heart breaks for her and her family.

Shortly after Rhiannon was born and her parents discovered she had Down syndrome, I received a call from the hospital's lactation consultant. She wanted advice and ideas to help support Rhiannon's mother. I gave her advice, I emailed her links and other supportive information, I gave the okay to pass along my personal contact information for the family to reach me when they were ready. We met for the first time when Rhiannon was just a couple months old. She was so cute, tiny, pink and sleeping in her mother's arms. I listened to them talk of their fears, concerns and hopes. I prayed they'd have the peace and happiness that we had, sooner than later. We saw each other I think one other time when Rhiannon was still an infant, then not again until last September.

Rhiannon had grown so much! What a healthy, vibrant toddler! She was obviously the delight of her family and had two older brothers wrapped around her pinky. I enjoyed watching her play and explore. Her family was expecting again, another girl. Rhiannon was to be a big sister. Her mother and I discussed our pregnancies after our child with Ds. The interventions of being high risk and "older." She wondered how Sean was adjusting to being a big brother, if he was interested in his baby sister and gentle. Again, I listened to their fears, concerns and hopes. I prayed for their peace and happiness and healthy arrival of the new baby.

Rhiannon's baby sister Serena was born in December and I heard through friends that the baby was doing well, but the delivery had been hard on Momma. I thought of them as she was recovering and hoped to see them again when she was well. They had planned to attend the local Down syndrome support group meeting at the end of February but big brother's birthday fell on the same night. Instead they went out to celebrate as a family. I figured we'd catch up at the next month's meeting.

Thursday morning, I got a call from our mutual friend that Rhiannon was sick and headed to the hospital, prayers requested. I kept her in my thoughts all day and hoped for a quick recovery, never thinking that it wouldn't come. Never realizing that she would be gone in just the blink of an eye.

Words can not express how sorry I am for them, for her mother and father and siblings. For their extended family. For the therapists that grew to love her while watching her grow. For her church and community that delighted in her prescence. For her brothers and sisters in the Down syndrome family. Such a sweet little soul, gone too soon.

I will continue to pray for them, for their peace and happiness. That they can heal and grow stronger. That Rhiannon's memory will always shine.

Weekend Retreat

We took a little work and play retreat this weekend. Friday night, we drove to Wichita to stay the night in a hotel and let the kids play in the indoor pool. It was Ella's first time in a pool and I didn't take any photos! Ugh, well, she didn't care for the pool because it was too cold. She did enjoy dipping her toes in the hot tub, though. We will have to stage that again and get photos next time. Sean and Aidan adored it, of course, those two love getting wet in any form.

Saturday, Ella and I went to a day-long workshop for La Leche League Leaders where we got to hear presentations by Diane Wiessinger, MS, IBCLC. She is a great speaker, very entertaining and had original approachs to the topics she covered. I am really glad I was able to attend and felt like I came away with a lot of useful information. Plus I got to hang out with real life cloth diapering/breastfeeding/babywearing mamas and kiddos all day!

Doug took the boys around Wichita to play all day. They went to SportsZone where they played putt putt golf and video games, had lunch, found a playground to play in, then met up with a friend for chips and salsa at a Mexi place. By the time they picked up the girls, they were pretty tired!

We drove from Wichita to my parents' house that night, with a stop at a nasty truck stop for dinner. Shudder. Sean and Ella took naps in the van while Aidan and I watched Kung Fu Panda.

Sunday was spent going to brunch with my family, hanging out at the house, and a little shopping for weekend pants for Aidan. Monday Ella and I went to my mom and dad's offices so they could show off their youngest grandbaby. Eventually we made the drive home and are now enjoying our spring break week in our jammies!

In spite of my intentions to take photos this weekend, I only shot a couple of the kids having a bath together in mom's retro tub. Now she officially has photos of every grandchild in the yellow boat.