Monday, December 29

.... 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.

Friday, December 26

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.

Thursday, December 25

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.

Sunday, December 21

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.

Thursday, December 18

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!

Wednesday, December 17

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.

Sunday, December 14

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.

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.

Friday, December 12

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!

Wednesday, December 10

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.
Neither baby wanted to 'wait' in the 'waiting area'
Liam wanted teacher Hannah's microphone which she was going to use to read the verses.
Tommy started to rip his angel wings and eat them
Liam twisted his halo into an oragami creature of unknown species
Tommy screamed, and screamed, and screamed
Liam layed down on the stage and flopped around in misery over no microphone
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.

Tuesday, December 9

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~

Monday, December 8

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!!!

Wednesday, December 3

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):

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.


Tuesday, December 2

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,

Tommy Adventures