Monday, December 29
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
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
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 last year was spent in a different hospital. I had RSV and Pneumonia.
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
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
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.
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
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
I love a good picture with Santa.
Friday, December 12
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
Tuesday, December 9
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
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
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.
- ► 2013 (34)
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- ► 2009 (157)
- .... and the lab result is....
- Tommy's tummy
- Merry Christmas
- Antibiotics, nebulizers and drops (oh my!)
- There is some white stuff on the ground
- What works for us Wednesday
- Christmas Angels
- Parent to parent Chrismas party
- Happy Birthday Tommy and Liam!
- What works for us Wednesday
- Choosing to see the beauty
- A weekend away
- What works for us Wednesday
- For Ethan's parents
- ▼ December (14)