.... and the lab result is....

No staph infection. Huh? The doctor's office called and said his gtube stoma was inflammed due to 'regular bacteria'. No staph. "But, keep the septra antibiotics going for their full course just in case". Huh? So then I described the stoma site still red/angry/uncomfortable. The nurse said to wait another day or two. Huh? Okay, but then that is New Year's eve and I'm sure you have minimal hours that day. Yep, was her reply. Huh?

Does anyone out there have experience with gtube inflamation that isn't staph.... but still treated with antibiotics? Remember Tommy has HD and antibiotics are not his bum's best friend. Needless to say I don't encourage antibiotics that are unnecessary. This is his 14th antibiotic in 12 months.

Tommy's tummy

Today is Tommy's first day on Septra. A powerful medication that is actually a combination of two antibiotics, and hopefully this is the answer to his staph infection around his Gtube. Yesterday he just wasn't his jolly self, his belly hurt. The stoma just wasn't looking right at night. So this morning, off to the doctor! We left the house at 8:30am and got back at noon. Not too bad with all the snow and toddler twins that want to toddle thru the snow.

The dr took a swab of the 'gunk' coming from the stoma. By Monday we should know what this staph is sensitive to. I'm betting it's the same one we have been battling for two months. Just never goes away.

On a good note, the dr said we are doing a good job keeping Tommy's lungs clear. The nebulizers every 4 hours are helping lots. Pulmicort and albuterol twice a day and then albuterol two more times a day is doing the trick. He really doesn't like the mask being on his face though. I sing songs, read books, put puzzles together with him while the treatment is going but he HATES it. Anyone have tricks that work for sitting thru a nebulizer treatment?

On an even better note, while waiting at Haggen's to get the prescription filled I asked the boys if they wanted a cookie.... and Liam signed "cookie.....please" Yippee! I almost cried. Tommy signed 'more' so at least I know he is connecting something in his mind.

Merry Christmas

This is my third Christmas but my first one at home! For all of you that were praying for us to stay home this Christmas, it was a wonderful gift to end the year. Photos say a thousand words so here they are from three Christmas' past:

Christmas 2008 (at home)

We got a train set and a ball house. Right after this picture Liam spent most of the morning in and out of the ball house and I took the train set apart (very gently). Go figure, just when mommy thinks she knows what we will enjoy.... we trick her.

Christmas 2007 (St Joseph Hospital)

Christmas last year was spent in a different hospital. I had RSV and Pneumonia.

With Hirschsprung's Disease I get a RAW bum on antibiotics (mommy capitalized that for added emphasis, she wasn't going to say it bleeds and is just plain painful to even look at). So she kept me naked bum'd and used cloth diapers. Christmas in cloth nappies. Oh what joy!

Although we didn't get a picture of Santa that year. He did find me at St Joseph's hospital. It was late in the evening, way past visiting hours. And when the Santa came he was very real looking (mommy got really teary eyed). Our room was off limits to most visitors just because I was very contagious (RSV). Santa stood outside our room talking to the night nurse and finally came in for a visit. When mommy thanked the nurse after Santa left, the nurse told her a story. She had never seen that Santa before. And when they were standing outside my door, the Santa was arguing a bit with the nurse that he didn't want to wear a mask. He told her the mask might scare me. This was a loving Santa!

Christmas 2006 (Seattle Children's Hospital)

Hannah is holding Tommy (cords and tubes and all), Nate is holding Liam. Santa was a little baffled as to twins.

Mommy and Tommy shared a quiet Christmas.



May the love, peace and joy of the true meaning of Christmas find your heart wherever you are! Merry Christmas everyone.

Antibiotics, nebulizers and drops (oh my!)

Daddy took Liam to the doctor today (thanks to Madrona for having a peds clinic on Sundays) and his left ear is infected again. Even with the ear tubes, there is an infection. In fact the dr said there is a worry the tube is blocked because the infection hasn't drained. So, oral antibiotics and ear drops and a snuggle or in Liam's day today. He has been keeping his parents up too much at night and with a temperature for three days, it is time to get him all fix'd up.

And me? I get the nebulizer four times a day again. Albuterol and pulmicort twice a day and just the albuterol the other two times. My cheeks are red and there is a little of that gross runny stuff from my nose. Blah!

We have plenty of snow outside. Mommy says it can stop snowing any time now and things would be good. But the flakes just started again. We have a turkey in the oven and are going to enjoy a pre-Christmas dinner tonight. Hope everyone else is snug in their homes.

There is some white stuff on the ground

Mom called it snow. And she seems really happy about it. Somethin' about she couldn't make it to work today. Snow drifts were huge-r than a car on our road. So, when she bundled us up, I was thinkin' I might like this white stuff too.

I was thinking that I usually like the same stuff she does. Sometimes it takes me awhile to like it.... like eating took me awhile, and being patient for her book readings took me awhile, but eventually I like things that she likes.



But my younger brother (cause he is 12 minutes younger than me) isn't that eager to like the same things. He looked worried when mommy opened our front door and show'd us the white stuff.

"Liam you will have fun.... let's go play in the snow" she said.








Mommy opened our front porch baby gate and plopped us down in the snow on our steps. Liam wouldn't budge. It sounded like his throat was making a growling sound. Half whiney, half growly. He didn't like the white stuff.






And me? I quickly scooted off that step and plowed thru the snow. I LOVED IT! I crawled in it, tried to walk in it. Made squealy sounds. Mom was right, it was great!









Liam stood on the same step.
Never moved.
Never smiled.
The growly noise continued until we were back inside the house.

Mom hopes that he likes snowmobiling, cause daddy is wanting to go very soon!

What works for us Wednesday

I had a few topics for today's "What works for us" Wednesday. But I chose one on discounts because there are probably a few shopping trips on everyone's "to do lists".

We try not to pay full price for anything. We shop consignment. We accept hand me downs from cousins (Andrew, Gabe, Maddie). And we willingly take on hand me downs from our friends with special stuff (aka Cooper's old DAFO orthotic's and high tops and Lukas' outgrown coat/snowboots).

Discounts on things that we need to buy in retail stores are really important for us. We haven't had a credit card in six years! We pay cash for everything we buy. Sound strange? For some it might be. For us, it causes us to live simple lives and realize we can do without a lot of extra stuff! We save for things that are bigger purchases.

So, the discounts at retail stores goes like this. Using the internet find the website of a store you want to shop at. For our teenagers we wanted to go to 'PacSun' and get them each a new pair of jeans. So, I logged onto their website and found a discount thru email sign up and ...... got a 15% off total purchase! Yippee. If we can find jeans on sale, the extra discount helps out even more.

Christmas Angels

Monday Dec 15th is the last day to make a donation to Reece's Rainbow and still receive an ornament for your tree with the picture of your sponsored orphan on it.

http://www.reecesrainbow.com/angeltreesponsorpage.htm

This is who we are praying for, little miss Anastasia. We sponsored her. We hope that her 'forever family' will find her soon. She is in jeaopardy due to her age and developmental concerns of being placed in a mental institution. Most children in Eastern European orphanages with Ds (and other developmental concerns) are institutionalized by the age of 4 and not expected to live long after that.

The entire amount that you donate goes toward sponsorship of an orphan. Go ahead, do it!

Parent to parent Chrismas party

I love a good picture with Santa.

If only Tommy loved Santa....

Oh how we loved going to this party last year. Legos, crafts, pictures with Santa, food, tactile table and plenty of space to run/walk/crawl.

Our cousin Madison loved it too this year!

Liam LOVED the lego table.

So, when mommy came closer for a picture

And to play......

She got a huge reaction....

No, go..... (actual words were "ahhh, oooo" and a shove)

Best of all we got to meet Ethan and his EXTREMELY cool family. They are new to our town and we have much in common. Aunt Debbie and cousin Maddie came too this year. Aunt Debbie helped mommy a ton with two happy wild twins.

Tommy was happy with a dustpan!

Mommy can't wait to put that new skill to work at home.

Happy Birthday Tommy and Liam!

Today the twins turn two years old! Wow, that time has passed us fast. We are celebrating tonight with family and I'll post pictures soon.


It seems like a good time to update what they are doing.


Liam continues to add new words very slowly. Right now he consistantly says "truck" as "gack", "car", "mo" for more, and sometimes he says "dada", "tree", and "waz dat". He signs: please, thank you (on occasion), dog, more, milk (two hands when he is thirsty) and eat. He has speech therapy every other week. And attends developmental playgroup once a week. He loves trucks, cars, running around, and dancing (he has a great style to dancing, much thanks to Hannah and Nate). He eats everything and lots of it (just not so much at breakfast). He loves Hannah and Nate and often follows them around. He and Tommy have a special 'twins language' that sounds like "gak" from the movie "Mars attack". They seem to know what each other is wanting when they speak it. Frequently, Tommy rubs Liams head or Liam wraps his arms around Tommy.

Tommy's verbal words include "mama", and "mo" for more. He smacks his lips when he is poopy and/or hungry. He signs: mama, dada, dog, cat (sometimes) and 'more'. He signs the songs of: "itsy bitsy spider", "open/close them (hands)", and "where is tommy (peek a boo)". He attends developmental playgroup once a week. Speech therapy every other week. Sees the nutritionist about once a month. And occupational therapy every other week. He continues to see a cardiologist at Seattle's Children's every 6 months for a mitral valve leak. He loves everyone, no one is a stranger to Tommy. He eats almost all foods. With Hirschsprung's disease we have steered away from sugars as much as possible. He loves mandarin oranges, peas, anything with gravy on it, banannas and yogurt. He is walking a few steps at a time unassisted (up to 12 steps). And has the fastest crawl I have ever seen on a baby! He is sipping from a straw honey bear cup. His meds these days include: miralax, senna, captropril, prevacid and right now his 10th antibiotic for the year.

Pictures are coming!

What works for us Wednesday

A patient teaching staff at Promise.

Last night was our Christmas program, which Promise does each year. We have been looking forward to this evening. It's at a local church which has a huge beautiful sanctuary. The kids sing songs and if they can't sing they just look cute!

Tommy and Liam were angels to the shepherds. Along with their buddies in their age group at Promise. They wore white shirts and had white wings with small gold halos. Beautiful. Just absolutely adorable and beautiful and precious.

Until....

Neither baby wanted to 'wait' in the 'waiting area'

Until....

Liam wanted teacher Hannah's microphone which she was going to use to read the verses.

And....

Tommy started to rip his angel wings and eat them

And....

Liam twisted his halo into an oragami creature of unknown species

And....

Tommy screamed, and screamed, and screamed

And.....

Liam layed down on the stage and flopped around in misery over no microphone

And.....

Liam screamed, and screamed, and screamed

Since daddy was conveniently at the back of the sanctuary video taping and taking pictures (which I will definitely be taping over), I was just a tad bit anxious over their behavior (and I was stuck on stage holding them).

The teaching staff at Promise never were concerned. In fact, Sherri the Director, thanked the 'choir' for their performance. Evelynn you are always a great help to me too! Thank you Promise, for more memories. And for your patience and love to ALL kids.

Choosing to see the beauty

Last Friday evening I had the opportunity to share dinner out with girlfriends. I tend to think we are all 'super cool' moms. At the very least we are moms to kids with special needs. At one point in conversation, my friend Kati had said that we get the unique opportunity to share accomplishments and successes everyday. Our children have the ever so slight and slowly developing daily "hoorays" that most typically developing kids just whiz past. Her comment was perfectly timed as just that day I had two teary breakdowns of "why can't he", or "why does this infection keep happening to him". I sometimes tend to get caught in the brief saddness instead of the incredible success each day holds. He is the only kid that I know that claps for himself while walking!

So, today, I was reading one of my favorite sites and I found this. Grab a kleenex. Our extended family probably feels like this at times too~
http://www.5minutesforspecialneeds.com/707/choosing-to-see-beauty/

A weekend away

Christmas came early! Grandpa Bill and Grandma Sue got us a wonderful present to see the Seahawks/Patriots game and stay in a hotel in Seattle. Best part of the present was Grandma Sue and Aunt Tami came up to watch all four of our kids! And Tami brought cousin Andrew!

Liam and cousin Andrew liked getting inside the dogs crate. They didn't stay there long.

Tami and Hannah got to exercise Hannah's new horse Babe.

Tommy's med's were line up, labeled with day/time for no confusion. The heart medicine is especially a dangerous one.

We really enjoyed the game (except the ending). Colin's brothers Bruce and Marty were there too. And our nephew Joe who is just home from Basic Training in the Army and soon to go onto Germany.

Thank you Grandma Sue and Aunt Tami! We love you both ALOT! Thanks for taking such great care of all four kids. And doing the laundry, cleaning the microwave, keeping up on highchairs, sink full o'dishes, steam cleaning the living room floor, and supervising the lights going up outside. Thank you!!!

What works for us Wednesday

With a family of six and most of us gone from home during many hours of the day, crock pot dinners are "What works for us".

Here is an amazing website for year round crock pot recipes (even a yogurt recipe, that saves ALOT of money for yogurt):

http://crockpot365.blogspot.com

Mmmm, I can almost smell the yumminess from those recipes. A small amount of preplanning before you leave the house.... and dinner is waiting when you return. What could be better? Someone to do the dishes, yes, I know.

Enjoy!

For Ethan's parents

I'm not very technology savy (this blog is the most I have ever done on the computer), but I saw your comment and want to meet your family.... and especially Ethan! Please email me so we can talk, sledding62@hotmail.com

Solutions - because I missed our "What works for us Wednsday"

I have been struggling with Tommy fitting into his small traveling highchair which we use for his tube feedings. His tummy is grown too big for the small chair tray. He needed a bigger feeding chair. We used the small chair in our living room for his 6am and 7pm feedings. Our family likes to start the day with cartoons and end the day with a movie. So our therapists had an idea of bolus feeding in his regular big highchair from our dinning room. So we wheeled it into the living room and velcro strapped a couple of bolus feed syringes (one to be used while the other is in the dishwasher). Perfection.

The other solution came from Braska Bear's mom and that was regarding care for his gtube opening. We now keep a split gauze with A&D ointment on it next to the opening. This is taped closed (but not taped to him) and soaks up all the gross stuff that gets goopey. Nice and neat.

Another feeding bag solution is to fill it for day with milk and set the dose for the amount of each feed. The pump shuts off after that dose, for Tommy it's 6 ounces. Then we just unhook and refridgerate the rest. The beautiful part of this is that the bag and connector is already primed. Sheer brilliance! This is great when you are on the road all day and can take just one bag and an icepack in a lil' cooler.

The last solution is something that we have actually enjoyed for a long time but are reposting here in case it helps another family. Our friend Shari once shared with us that we could refridgerate empty feeding bags for 24 hours rather than rinsing and repriming them every usage. This saves so much time. She is a wealth of amazing experience and knowledge.

Solutions to everyday gtube care are timesaving for us, but more importantly, they are caring support for Tommy. Creating a lifetime for each of our kids is our priority. Solutions help!

Happy Thanksgiving!

We traveled to Grandpa Lee and Grandma Linda's house for Thanksgiving. Guess who was there? Lots of our family! Aunts, uncles, Grandpa Bill and Grandma Sue... oh, we had fun!

Did you enjoy Thanksgiving day? We all have so much to be thankful for.








A few days before, we enjoyed Grandma Sue's homemade applesauce. Sans bibs. Notice I'm using a spoon! It's kinda hard, but mom and dad keep putting it in my hand.






Laim LOVED the applesauce.











We were at a neighbor's house and mommy just loved this picture of us pushing our toys together.







After our bath, mommy and dad couldn't get us into our pj's fast enough. Liam and I grabbed our small push trucks and off we went thru the house. Drooling while making vvvvvvrrrrrooom sounds.

Beauty

I want to share an inspirational family. After having a sweet little girl with Ds, this family went on to recently adopt two precious girls from the Ukraine. This posting from their website is just so beautiful I wanted to share with you:

http://findinghiddentreasures.blogspot.com/2008/11/don-you-think-my-new-sisters-are-pretty.html

Need ideas for G-Tube help

Tommy is growing. Which is such a blessing. But, he is growing out of his 3-ring bath chair and his portable highchair that we do g-tube feedings in. Heavy sigh. His tummy, specifically his G tube is rubbing against both now. He cannot sit up very well in a slippery bathtub and really needs some type of assistance. And I can no longer hold him still on my lap for his 6 am and 7pm tummy feedings. He really needs a larger feeding chair.

So, any ideas from out there? Do you have a 30 pound baby like mine? How do you bathe your baby with a Gtube, especially those of you who also have Down syndrome. Do you use a chair in the tub or do they just sit and play in the tub without much assistance? I'm sure that soon enough he will be fine in the bathtub without much assistance, but right now he falls over and slips under the water sometimes. I wish they made a super large 3 ring bathtub chair, that would be perfect for Tommy! And how do you manage gtube feedings? Do you use a highchair? A bumbo? Tommy needs a chair of some sort that doesn't rub against his tubing.

Help me! Please. Last time I recruited help was for my poor aching back after toting Tommy all over the pumpkin patch sans carrier or stroller. And the solution was sheer brilliance. My friend Kati put me in touch with an Ergo Baby Carrier. Ahhhh. I LOVE IT. And so does Tommy. You can have your baby in front, or on your back, or even on your hip. It's wonderful. And it places his weight on my hips. And holds up to 40ish pounds of baby love. So, tell me your suggestions for a bath chair and a feeding chair for my sweet baby Tommy.

Much better

Tommy is feeling much better. His gtube area looks normal again. And this afternoon he took four steps unassisted and then pivoted on his left leg doing a 180 degree turn. Look out! He might be walking before '09.

I'm feeling better too. My sore throat from strep is gone. I almost have my energy level back.

I'm really excited to meniton that I participated, with many other people, in a Community Meeting last Friday. We discussed the need to design improvements to services for kids with special healthcare needs/developmental concerns. Over 100 people attended. The most flipcharts I have ever seen in one room. Once a summary of the meeting is ready, I'll place a link to it here. It sounds like there will be more conversations where these leaders hope to involve more families.

And lastly, the twins turn two years old on December 12th and do you think I have anything planned? Nope. Need to make some fun plans for that celebration.

Take care everybody and have a good week.

Greetings from our in home medical ward

First thing, Tommy's lab results for his gtube site came back as staph. Yuck. So we added nystatin cream around the site three times a day. We elimated one of the antibiotics (because it wouldn't have worked for staph) and kept the cepha antibiotic. Plus, the dr called in a prescription for an oral antifungal (just to eliminate anything that might be growing) and the lovely prescription came in the form of two HUGE oral pills. What? A very tired daddy had picked them up from the pharmacy and didn't even look at the prescription. I laughed so hard when I saw it, okay, at what point do you think that a toddler with an infected GTUBE would be taking an oral medication (a huge one at that). We talked to the pharmacist who approved us to crush the pill (some you cannot do this) and put it in water and down his gtube. Whew! He is well medicated and lookin' great now.

But now mommy is sick. This is day three of strep throat for mommy. Gross. Yesterday I mustered the strength to drive to the dr and all she could say while looking in my throat was "horrible, sandi, just horrible". Tonight I will officially be non contagious. After 24 hours on antibiotics you aren't contagious anymore. I hope to feel better too. It hurts so bad. Blah! We canceled all therapies for the week. Need rest.

He's feeling better

Tommy is feeling much better today. The two antibiotics must be doing the trick. The infection didn't grow beyond the ink outline that the drs sketched on his belly.

Tommorow the lab results should be back saying what he has. Thank you RK for the suggestions of ways to prevent this from happening again. I'm going to do all of them!

Not feeling well

Tommy's g-tube area is infected. The infection has grown quickly. Thanks to Miss Sherri for a phone call today. It took three doctors this afternoon to decide not to admit him to the hospital. Heavy sigh. This time he is on two types of antibiotics at once. They took a swab from his g-tube area and the results will be back tomorrow from the lab and hopefully we can get down to just one antibiotic.

Words that don't go well together.... Hirschsprung's Diseasse and antibiotics. This will be a poopy weekend for sure.

But as long as Tommy starts to recover and feel better we will be happy. If anyone has ideas on keeping a g-tube site a little cleaner let me know. We have had the Mickey since Oct 20th and I struggle with it's daily care. Ideas?

What works for us Wednesday

I had so many ideas for today's "What works for us" but I finally decided to write about something that happens daily for us and that is good childcare. It continues to be a place that tugs my heart, I really want to be the one that cares for our four kids. But, on the days that both Colin and I work, we have been blessed by the most incredible and fantastic childcare, Promise. They know how to care for the boys more than any of our family members. They love our boys and are amazing in their thoughtfulness and communication. Here is a note from this last week for Tommy:

"Tommy had a wonderful week at Promise. He is getting more adventurous with his movement and is trying very hard everyday to take steps. We are still working with him to make his core stronger as well as making sure he has toys available that he can lean on and push around the room. Our Fall Festival went great. Thanks for the cookie donation they were delicious. Both of your boys got to help Miss Sherri make homemade applesauce which we ate for lunch the very same day! As you have noticed we have been spending less and less time outside which means that we are working twice as hard to keep the kids entertained. Be prepared for more art projects and cleaner clothes!"

Thanks to all of our great teachers at Promise! You are what works for us. We love you guys.

Feeling a little better

After developmental therapy today, mom said some vitamin D would be good for me. She gave me a nebulizer treatment and then outside we went. I think she was right. It's either that, or the vitamin 'fun'. Liam and I walked our cars to the end of our driveway and back at least three times (mom lost count). For Liam, that's no big deal. But for me it's really good.

Super twin powers

Something apparent lately to me during therapies is how much the boys problem solve together. One holds the bucket so the other can take things out; one arranges the couch cushion off the couch so the other can climb up, if one is sad there is always a hand from the other rubbing his head, etc.

Most notably, they talk some type of jibber-jabber (twin speak) and seem to be happy with the meaning of it. Their smiles seem to mean they understand.

They don't use sign language to talk to each other, rather their sign language is only directed to Mom and Dad or Hannah and Nate. But through their wonderful teachers at Promise and our speech therapist, we will soon get the boys using words. Super twin powers will continue, but hopefully so will "words" and more signs.

Congestion

After a two month absence from any pulmonary care, Tommy is back on his albeuterol and pulmicort treatments every 4 hours. His congestion from a common cold caused at 1am nebulizer treatment last night. Poor guy just gets so wheezy from a sniffle.

"What works for us" Wednesday

Prenatal (and postnatal) diagnosis is a very tender subject for families. I'm not posting about pro-life or pro-choice so don't get all anxious on me. But I am posting about information. Data and resources is "What works for us". We received a prenatal diagnosis and we did read and learn alot after that 20th week diagnosis.

Recently Congress passed legislation to ensure that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. http://www.ndss.org/images/stories/NDSSresources/pdfs/kb_press_release.doc

Tommy and Liam were born 12/12/2006, so I wanted to post data here about what happened in Washington state that year. During 2006 in the State of Washington, there were 86,845 babies born. Only 77 of those babies have a diagnosis of Down syndrome. That is only 9/10ths of 1% ( .0008866) were born with Ds.

Many, many more than that were prenataly diagnosed. A 2002 literature review of elective abortion rates found that 91–93% of pregnancies in the United States with a diagnosis of Down syndrome were terminated.

Interesting other facts for 2006 (State of Washington) are the number of babies born with Hirschsprung Disease, 9. Less than 1/10th of 1% (.0001036) were born with a diagnosis of HD. Although that is not a prenatal diagnosis, I thought it interesting enough to post here because I would love to learn from other HD families in Wa State!

Extremely interesting was the fact that in 2006 there were only two births in all of Washington State that had one or both babies born with Ds. Both were in Whatcom County. One is us (of course), and the other set are the most beautiful (and active) girls you will *ever* meet.

I was never aware of how many families in the US (and abroad) are welcoming kids with Ds or other developmental diagnosis. Here is Reece's Rainbow website again http://www.reecesrainbow.com/angeltree2008.htm. There are so many families in the United States welcoming adoption *and foster care* of children with Down syndrome and any developmental disorder.

A few inspiring folks (both are must reads):
http://www.hidden-worlds.com/judithscott/
http://www.karengaffneyfoundation.com

It's been almost two years since the twins were born. "What works for us" during the prenatal diagnosis was information (and lots of faith).

Liam's sedated Baer hearing test

Daddy and Liam are at Children's right now figuring out with the nursing staff 'if' Liam is healthy enough for the Baer testing and sedation. We will keep you posted! Mommy and I are still in Bellingham today, it's hard not to be with them. Please keep Liam in your prayers this morning for a safe test and conclusive results in regards to what levels he can hear.

**Update, 9:45 Daddy called and Liam is safely sedated and the test is being done. Praise God! Finally, we will be able to understand what little brother can hear and rule out hearing loss (or rule in).

According to daddy, the nurse listened to Liam's chest, wiped his nose and decided that there was no 'junk' that he could aspirate on while sedated.

He is asleep now, hooked up to an oxygen saturation reader and a blood pressure cuff. The nurse will stay with him throughout the BAER test.

The test should take 45 mins to 1 hour. The results are immediate.

Basically, the way daddy explained it, the dr sends tones through his ears and the probes that are attached to his head give readouts of when that sound reaches his brain.

Thank you for all the prayers! A little 28 pound boy who doesn't talk yet... is hearing your prayers.

**Update 12:30 Liam is awake, eating and drinking and smiling according to a very relieved daddy. The test results show that he has wonderful hearing levels, all within normal ranges. Which, surprises me, but I am so thankful. He can hear at all the appropriate ranges!

Thanks to everyone for thinking of Liam today. It means alot. We have speech therapy for Tommy at 3pm and am anxious to tell the therapist (who also sees Liam) the results.

Reece's Rainbow Angel Tree Project

The Angel Tree is an amazingly wonderful Christmas gift idea. I get little teary eyed looking at all their sweet faces. What a terrific gift idea!

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.

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!

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.

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):

http://www.parenting.com/gallery/Baby/A-Special-Joy-20-Babies-With-Down-Syndrome/13

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.

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 :)

"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.

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?

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.

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.

"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!

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.