Wednesday, September 30

Pneumonia titer results

A few months ago we began diagnostic studies to try and figure out why Tommy has recurrent bacterial respiratory tract infections. After he spent a week inpatient in June with double pneumonia (and many more hospitalizations earier) it was apparent something wasn't working in Tommy's immunity.

In August he received the pneumonia vaccine because his anti-polysaccaride antibodies were at zero. And in September we had his titer count rechecked to better understand how his body handled the vaccine. If his antibodies were up and in a normal range, then he would be immune to pneumonia or at least better able to fight off the infection. If the antibodies were still down then we, and our local Immunology team, would be concerned of other abnormalities.

Today we learned, after much prompting over the last few days for Seattle to talk to Bellingham (frustrating), that his titer count is still at zero, or near there. I feel like my son has already been through everything possible and that this is just absolutely unfair. The test result was that his body didn't develop any antibodies. It's the worse result for that test.

So, in the next week we will meet with a team of Immunologist here and talk about why his T cells and B cells aren't working correctly. We had already ruled out Cystic Fybrosis and did a general high level Leukemia rule out. But according to the conversation today, we will be talking about additional diagnostic testing for what the specific abnormality might be.

Short term solutions might include prophylactic antibodies for the entire winter season. Non stop. Which if you have a child with Hirschsprung's disease you know this is a debilitating answer. Another solution might be immunoglobin therapies. Long term solution is prayer. Literally, I fell to my knees when I got off the phone with the news and prayed that God would give Colin and I guidance on what to do. And then immediately went to hug him while he was napping. He has been thru too much already and this is just unfair.

I would really like to hear from those of you that know about SPADS, polysaccaride antibody defeciency syndrome. Did you choose to do ImUg therapies or prophylactic antibodies? And I would love to feel some good thoughts heading to Tommy!!! He wants to hear everyone say he can do this one too!

Tuesday, September 29

Flu update

Hannah got a clear chest xray this morning showing no pneumonia. Yippee! Typical flu symptoms per the doctor and back to bed she went. What a trooper! She is just miserable with this stuff.

Nate is doing much better. Catching up on his homework from school and even thinking about going back tomorrow. He is 24 hrs since a fever. He is my non complainer so I never really know how he feels.

Liam is doing better. Still has a fever of 100.4 and this is day three. The cough and body aches are still his main grumbles.

Tommy has dodged the flu so far! Oh my!

And my wonderful husband Colin has stayed home for two days now caring for the kids so I can return to work and finish the dept budget. I love that man!

Monday, September 28


Hannah, Nate and Liam all have the flu. For Hannah and Nate it's about day 7. For Liam it is just the beginning. Hannah is just miserable with it. Coughing, fever that stays around 100, body aches, headache and just no energy. Nate is doing slightly better, but I think he just doesn't complain as much :) And for Liam the ibuprofen turns him into superman. I thought it was just a cold for the older kids, but now the doctor says the symptoms are more of the flu.

Of course Tommy isn't going to be able to avoid the flu now. He won't dodge this bullet as most of us have it. It's just a matter of 'when'. I contacted his doctor today and as soon as he shows signs they will give him Tamiflu antiviral. I have mixed feelings about that, but all who I have talked to say Tommy is exactly who the Tamiflu is designed for and should be immediately given. Anyone else gotten this far with the flu with special healthcare kids?

I'm getting a bit sick of the kids being sick. I love them all dearly and caretake for them to the best of my abilities. But honestly, it's week three and I'm tired. I miss my extended family, I haven't visited with many of them for almost a month. It's lonely and isolating when your kids are ill. And I feel badly for my kids because they are just in pain and so bored of being stuck at home.

I pray that I don't become ill until everyone else is better. It just works out so much better. Hope all of you are in better health than us :)

Saturday, September 26

Buddy walk 10/3/09 - Saturday

Come join us and walk for awareness and inclusion for people who have Down syndrome.

Saturday October 3rd at Maritime Heritage Park in Bellingham. Registration starts at 11 am with the guest speakers starting to talk around 11:30 and the walk actually begins shortly before noon.
There will be LOTS for kids to do! A tactile area with bird seed to play in. Games with prizes for everyone. There is even a silent auction area where items such as "Family Movie Night" or "Restful Chrysallis getaway" are up for bids. The proceeds of the event go toward Down syndrome outreach of Whatcom county. Special events for families are held throughout the year like... in the past there was a guarianship seminar and a concert starring Chris Burke. The DsO has always had fun events for families and people with Ds.
We are helping out on the donations for the Buddy Walk and got to meet the nice folks at Walmart. They really enjoyed the letter about Tommy and how the DsO has helped us so much. They gave a big check to help fund the Buddy Walk!
Tommy LOVED their staff meeting and just maybe we left a few soft hearts there! He was laughing, signing songs and RUNNING throughout. Thanks to one great donation WalMart.
See you next Saturday at the Buddy Walk!!!

Thursday, September 24

Birthday celebration

I'm 41 years old today and it was REALLY a fun day. I got to see my sister Debbie and niece Madison, they brought a bunch of cookies, iced pumpkin latte and flowers to me at work, what a surprise.
All four of my kids got me all kinds of fun presents. My husband made me a cake! Lots of phone calls and facebook birthday wishes made the day so special.
I'm not sure which picture I like better from my birthday cake. Help me decide.
Here is Tommy freaking out when everyone sang Happy Birthday. We all take these moments in stride, having confidence and faith that in a few moments he will recover. It's funny because we use to talk amongst the six of us about 'why' he has outbursts of tears or screams in fear at sounds, but this past year we have the quietness amongst us of just knowing he is being just himself. I'm sure we all would like to be ourselves more often!
Or is this my favorite picture? Hannah with her friend Alyssa on the phone. Miss A is my 'weekend' daughter. Spending Friday nights here after cheerleading or coming over on a Saturday night.... or sometimes both. She is such a sweet, fun and helpful girl. Alyssa sang happy birthday thru the phone speaker to me.

Daddy was still setting up the 'timer' on the camera so I got a sweet picture of me and my kiddos, a fun picture.

I like this picture too because Liam LOVES his big sista Hannah and always has an eye on her :)

Or is my favorite

Thanks to my family for a fun birthday! Love you guys :)

Dentist and dinner

Hi! It's been awhile since my face showed up on this blog. I'm doing much better! Can you believe my dentist office has all these toys?
Every tooth looked good! I will probably be missing two lower side teeth. But trust me, I've got a mouth full of other teeth to help chew food. Daddy sat with Liam to help him and mommy stayed with me.

Then we went to our favorite Mexican restaurant, yummy. Braska this is for you.... GWAK-a-mole.

Hope everyone is doing well and don't forget to mark the Buddy Walk on Saturday October 3rd on your calendar. We will be at the Maritime Heritage park around 11am. Hope to see you there too!

Tuesday, September 22


It's hard to find peace and quiet lately. Even just a few minutes in the day are difficult to catch for myself. Nate is now sick. Fever, chills, body aches. Hannah is still not getting much better and mostly is pre-existing tummy issues that now are going to need to be addressed. We have been referred to Children's for her and will be there next week for imaging and consults. She is miserable with pain in her belly. My teenagers just aren't themselves lately.

At work yesterday, I noticed this poem in a coworker's office and for a moment, in my bustle of the day, I found a portion of my heart peaceful.

I thought you might enjoy if you haven't read already:

The Desiderata
Go placidly amid the noise and haste,
and remember what peace there may be in silence.
As far as possible, without surrender, be on good terms with all persons.
Speak your truth quietly and clearly; and listen to others,
even to the dull and ignorant; they too have their story.
Avoid loud and aggressive persons; they are vexations to the spirit.
If you compare yourself with others, you may become vain or bitter,
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble,
it's a real possession in the changing fortunes of time.
Exercise caution in your business affairs, for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals, and everywhere life is full of heroism.
Be yourself.
Especially do not feign affection. Neither be cynical about love;
for in the face of all aridity and disenchantment,
it is as perennial as the grass.
Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline, be gentle with yourself.
You are a child of the universe no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.
Therefore be at peace with God, whatever you conceive him to be.
And whatever your labors and aspirations, in the noisy confusion of life,
keep peace in your soul.
With all its sham, drudgery and broken dreams, it is still a beautiful world.
Be cheerful. Strive to be happy.

Sunday, September 20

Barely better

Liam and Hannah definately got the worse with this virus. Liam went two days without vomitting and then last night.... just as I got the warm couch cushion covers BACK on the couch.... he vomitted all over..... the couch. Ahhhhh. I almost cried. For him. For me. For the rest of the family that is sick of being sick. Instead, I ripped those suckers off the couch, shoved them BACK into the washer on sanitary cycle, took a deep breath and grabbed the bleach spray bottle for the foam cushions.

I feel bad that both Liam and Hannah still don't feel good. They are stir crazy with staying inside and not being able to visit friends. This too shall pass. Soon I hope.

Nate and I still are the only healthy ones. Insane. But healthy. :)

Friday, September 18

In case you are keeping score

Now Hannah is sick. Poor thing woke me up at 3am and said she felt like vomitting. I had just gotten Liam to sleep with a sippy of water and the next one got sick. Hannah and Liam are both comfy on the couch watching The Pirates that don't do anything video. Tommy is running around everywhere and thank goodness not interested in barf bowls.

I'm counting down the hours until Nate calls from school saying he doesn't feel well.

Three sick.... three haven't been sick. In case you are keeping score on this yukky tummy virus.

Thursday, September 17

Tommy's better.... now it's Liam's turn

Tommy vomitted with this tummy bug for about six hours and then slept for nearly five hours and then was totally better!

Now it's Liam's turn. Around noon Promise called to say Liam was vomitting. Home we went and all I can say is wow my son can hold ALOT in his tummy.

We are staying home tomorrow and hunkering down. I'm starting to feel a lil' queasy myself and our teens are hopeful they will be spared... but I think it's pretty contagious. Yuk.

Tuesday, September 15

Heart visit

Today was our usual six month visit to Cardiology. Tommy still has a moderate mitral valve leak and the left side of the heart is still large according to the echo today. That we know.

Since Tommy was hospitalized with pneumonia for a week in June plus all the antibiotics lately for illnesses, we will be going back to visit Dr. Heart (simplified because I don't want to type the dept names anymore) sooner than six months for our next visit. More like 4 months if Tommy continues to be ill. The Dr. Heart recommended a referral to Pulmonary for a possible sleep study and cathaterization to check lung pressures. This will be a good thing.

We then went to the lab for a blood draw for Dr. Immunology back in B'ham as a follow up pneumonia titer count. And Tommy found the clown! Yippee, I just love it when Child's Life folks are about in outpatient. It makes life more livable :)

Grandma Sue was a wonderful help during the morning and we enjoyed lunch with her and a visit with Grandpa Bill before we came home. I haven't seen my mom in a month and my dad in two months! Bad daughter I am :)

Today was the first day that Tommy has one of his Gtube feedings substituted with Nutrene Junior (we are going to transition to water and Nutrene rather than milk and see if that makes a difference to his health). I only used 2 ounces rather than 6 to 'ease into' this new food. Heavy sigh. He barfed for the rest of the day. And night. What to do now? Does anyone else out there use Nutrene or Pediasure for one feeding during the day to get iron/probiotics/fiber? Thru a gtube? Yelp.

Saturday, September 12

Buddy Walk October 3rd -- PLEASE JOIN US!

Hello everyone! It's Buddy Walk time again. This year it will be on October 3rd, Saturday, and hopefully the weather will be MUCH better than last year.
Come walk with us! The Buddy Walk registration starts at 11am. There is fun stuff for kids, a cool t-shirt, and you get to meet so many people.
We access many services and programs thru Down Syndrome Outreach. The Buddy Walk promotes awareness and inclusion for people with Down Syndrome, as well as to raise money to support education, new parent welcome packets, events for people with Down syndrome and their families and advocacy.
Please consider sponsoring Tommy for the Buddy Walk by making a donation. His team name is "Tommy's Tigers". Your donation will help him and many other individuals and families enhanced by Down syndrome. Email us at if you would like donation information mailed to you. $5 or $10 will help. (For those that sponsor $25 you will receive a tax deductible receipt from the Down Syndrome Outreach.)

Here are the specifics if you want to walk with us: The local Buddy Walk will take place in Maritime Heritage Park on 10/3/09. We want you to walk with us. The Buddy Walk is about 1.25 miles long (strollers, wagons and dogs are permitted) and there will be activities planned for the kids, as well as Guest Speakers and other festivities. Registration starts at 11am. Look for Tommy's Tigers!

Tuesday, September 8

And so it begins...

Another school year. Nate is a freshman and loved all his classes.

Hannah is a sophmore and really liked her classes today too.

Sunday, September 6

Catching up

Tommy has been too fast for pictures lately. Literally, they are all blurs of activity. Which is good. You can barely see his eye infection is still there. The antibiotics are almost finished.

We received an exciting idea from a dietician at Option care. We are going to reduce his milk to 12 ounces a day and replace the remaining ounces with a combination of water and a can of Nutrine Junior. Even though Tommy tested not allergic to milk, I really think he has some sensitivity to it. Plus the Nutrine Junior has probiotics, fiber AND his iron which I cannot seem to figure out a good time of day to give it (ie not before milk, so long after his meds). This will be a HUGE blessing for Tommy's health. Especially his Hirschprung's Disease.

Labor day has been a long weekend to catch up with my family and relax. The twins have really enjoyed the swingset lately. Nate bought a skateboard and although he didn't stay on it long enough for a picture, I'm sure he will soon! Hannah has been busy with friends and getting last minute shopping finished for back to school. I have greatly enjoyed a couple of three mile walks with both of my teens lately. Good heart to heart talks and some wonderful excercise for a mom that really needs it.

Of course there was plenty of time to play with trucks and rocks and run around in before the rain started! We have enjoyed a garden that just keeps producing ALOT of veggies. My friend Tiffany is holding one of our 'smaller' cabbages. I even took them to women's group Bunko at church and gave them away. And would you believe I grew artichokes? We live less than three miles to the Strait of Georgia and within 8 minutes of the Canadian border.... and yet we grew artichokes. Thanks Aunt Elizabeth for great plants! The garden has been lots of fun, and an equal amount of work. We canned a total of 45 quarts of green beans. Lots of tomatoes are just ripening and our sweet corn is probably ready in another week. Carrots, beets and summer squashes continue to grow. Lots of lettuces, a few cucumber and HUGE walla walla sweets. Pumpkins are just starting to blush orange. And the bunny rabbits have left me a few lettuces.
I even had time this weekend to bake. The bananna bread is from one of my grandma's recipes, don't worry the recipe is actually touching the bread. I'm glad I took this pic, because the bread was gone in less than two hours after it was baked. Long weekends are so good for finding a recipe you really want to make, and having just a bit longer to actually make it.

Wednesday, September 2

What works for us Wednesday

What works for us this week? Keeping on the 'sunny side' of life. Yep, just like the song, you can choose to be thankful and keep things positive.... OR.... you can get sucked into sadness and a swirling vortex. Try it today. When you feel your mind and your heart are getting sad or anxious about a situation, take a breath, lift your chin a little up and just think to yourself I can do this! So, keeping on the sunny side is 'what works for us this week'. Here is how we turned things around:

Tommy has had an eye infection ever since his June 3 clogged tear duct surgery. He has been on/off antibiotics orally AND in the eyes. He just wasn't improving yesterday so off to the doctor him and I went again. Again. And there is where my heart grew pretty heavy with yet another round of infection and another lil' paper slip in my hand for an antibiotic. But, he and I both put our chins up and here is what we are thankful for:

We got to accidentally bump into a friend of Tommy's 'Miss M' and her parents. She turns three very soon and is SO CUTE! We don't see them very often and mommy always likes talking to her parents, so we are thankful they were placed in our path at the doctor's office.

Promise made Tommy a "to go" lunch for the doctor visit. They premeasured his milk and grabbed his Gtube connector/syringe made him a very yummy lunch in little totes so our 11:40 dr appt was very comfortable with lunch to go.

The doctor prescribed an antibiotic that is once day! Non refrigerated too. VERY parent friendly round this time.

When we got to the pharmacy it was Gtube feeding time and mommy got to educate a few people on "just what are you doing?". She sometimes feels akward with the questions and stares, but not this time, she is thankful the words came out just right and we are both thankful Tommy is completely on BOLUS feeds. No more pump! We were very portable :)

We are also thankful for triple insurance. All these dr visits do grow weary, but we are grateful for health insurance that pays it all.

And aside from doctor visits, we are also thankful for a GREAT freshman orientation and BBQ last night at Sehome HS where both Hannah and Nate got their pictures taken and schedules. I got a little teary thinking that Nate is in High School! But immediately was thankful that he is bright, very able and so handsome, and the amount of friends he had was reassuring that the transition will go well.

Keeping it on the sunny side :)

Tommy Adventures