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!

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!

Flu

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 :)

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!!!

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

...picture.....

.....this....

......one.....

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!

Peace

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.