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.
Tuesday, December 2
Sunday, November 30
Friday, November 28
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.
Monday, November 24
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.
Sunday, November 23
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.
Tuesday, November 18
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.
Saturday, November 15
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!
Friday, November 14
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?
Wednesday, November 12
"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.
Monday, November 10
Sunday, November 9
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.
Thursday, November 6
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):
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).
Tuesday, November 4
**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.
Saturday, November 1
Wednesday, October 29
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.
Monday, October 27
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!
Sunday, October 26
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.
Tuesday, October 21
"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).
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.
Monday, October 20
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 :)
Wednesday, October 15
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.
Tuesday, October 14
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?
Saturday, October 11
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.
Thursday, October 9
Wednesday, October 8
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!
Sunday, October 5
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.
- ► 2013 (34)
- ► 2012 (30)
- ► 2011 (56)
- ► 2010 (78)
- ► 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
- Solutions - because I missed our "What works for u...
- Happy Thanksgiving!
- Need ideas for G-Tube help
- Much better
- Greetings from our in home medical ward
- He's feeling better
- Not feeling well
- What works for us Wednesday
- Feeling a little better
- Super twin powers
- "What works for us" Wednesday
- Liam's sedated Baer hearing test
- Reece's Rainbow Angel Tree Project
- What works for us Wednesday
- What are the odds?
- Fall weekend highlights
- What 'works for us' Wednesday
- October is Down syndrome awarness month
- Pumpkin' patch
- "What works for us" Wednesdays
- A fun day
- And then a little bear entered the home...
- Please pray for two sweet little girls
- "What works for us" - Wednesday
- And the unfortunate grande finale to the Buddy Wal...
- ▼ December (14)