Thursday, August 25, 2005

Another trip, another day

On September 11th we are heading to Toronto once again. We will be staying overnight for two days. On Monday the 12th, I am scheduled for several tests. I will be starting at Toronto Sick kids at 8 am with a sweat test, to test the sodium level in my sweat, and a NPD test (which is done only at TSK) to also test more accurately for sodium released in my nasal cavity.
I then go over to St. Michaels for a CT scan and chest x-rays. When those tests are done I go on to the CF clinic and do my pulmonary function test, to check my air flow. Somewhere in there I will be doing bloodwork.
At 1pm I meet with Dr. Liz Tullis, the CF doctor, who I have been told knows a lot about mutations in the CF gene. I hope with all these tests, that she will have some answers for us.
So a crazy busy day, I am sure full of ups and downs.

Then Tuesday the 13th we go back to TSK to have Annika seen by her doctors and the rest of the crew. I pray she has gained weight. She seems to have grown taller. Now if you asked me 5 months ago "would you ever put butter, and salt into your child's cereal (let alone feed her" I would have replied "are you nuts!" But we do what we have to do.

I think the hardest thing about this disease is the lost of control. Before the disease came into our lives , we had a false sense of control and security, now that control has been stripped away.
I am now vaccinating my daughter(which I still have problems with.....Especially the flu vaccination because it still has mercury as a preservative in it) I pray everyday for guidance and strength.
I am sure life will get crazier!

Sunday, August 14, 2005

The word is out.....

Not long ago, Annika's doctor called to tell me the news. I too have cystic fibrosis. I am a carrier of the DF508 gene+ R117H-7T gene. Yep, that is right I carry two CF genes, therefore I am positive for the CF disease. The R117H-7T gene gives me full pancreatic function. I am still waiting to hear from Toronto. They are scheduling many, many tests for me. Toronto is pretty puzzled with the fact that I have been walking around for 33 years with little to no symptoms. I will be the adult guinea pig.
I pray they find something in me that can help Annika in the future. God gave me Annika, and without her , I may have never been diagnosed?
My life changed the day Annika was diagnosed, but it has changed even more since I was diagnosed. So many questions, with no answers yet. I don't know how I feel. Numb and depressed is a start.
I have given in to the fact that I will no longer be able to do hospital births, only home births( we all know how hospitals are teaming with germs).
I am filled with hope, and my faith is strong.I will fight for myself and my daughter.
This blog will serve as therapy for me I am sure. I will keep everyone updated.

Now doesn't that just say it all!

This was on my email today.......After all we have been through, I feel this is just what I needed to read. I have been dealing with depression on a larger note. This just reminds me that there is a light at the end of the tunnel
A friend told me the other day, "Think of your life as a giant maze, you know there is an exit, but along the way you will ruin into a lot of walls. If you need to be reminded that you will reach your goal, just look up" Isn't that so true, even though we run into walls daily, if we look up we see open sky, and God. We will reach the exit that is so desired....and life will go on!

Though you have made me see troubles, many and bitter, You will restore my life again; from the depths of the earth You will again bring me up. Psalm 71:20 NIV

Thursday, August 11, 2005

Destiny- A poem by Kaitlyn Seirra Langstaff

This poem was written by a young girl in constant pain and suffering. She was totally blind, had a trach, and was on many differant medications. Amazingly enough she still embraced life and ventured forward. God bless her soul.


Destiny is the dream of your future,
Destiny is your life you wish to live
Destiny is what we want to give.

When you wish upon a star,for something near and far,
You start thinking your wish won’t come true,
But really they do ‘cause of
Destiny is the dream of your future,
Destiny is your life you wish to liveDestiny is what we want to give.

It’s all up to you,
You can choose your life’s dreamsand wishes if you want to
I can help you make them come true
Believe in yourself
Destiny is the dream of your future,
Destiny is your life you wish to live
Destiny is what we want to give.

When you think it’s gonna end
Come to me my friend,
and make another wish on a shooting star and run across a rainbow into your
Destiny is the dream of your future,
Destiny is your life you wish to live
Destiny is what we want to give.

Kaitlyn Langstaff March 2, 2003
(Kaitlyn died December 17, 2003 as a result of complications from Stevens Johnson Syndrome)

Wednesday, August 10, 2005

What a whirl wind!

Well we got the testing back for Dave's mother, his twin and Dennis' fiancee Angie.
David's mom is a carrier of the DF508 gene.....a hard blow to take. We have to keep reminding people that no one chose to pass this gene on, it is like passing on the gene for blue eyes!(which both our beautiful babies have!)
Dennis is also a carrier of the DF508 gene, so the twins are defiantly identical(like there was ever a question of that!)
Angie is not a carrier, which means Dennis and Angie can have babies, with the possibility of their babies only having one CF gene and being carriers, not having the disease(it takes two CF genes to have this wonderful disease)
We will update you when David and I get our results from our blood tests!
Prayers for everyone!

What does Annika need?

Well we are starting a list of things Annika needs:

We need a crew of people to come over and help me clean the house from top to bottom, dust, etc (MOPS has already agreed to help on Wednesday July 27) Thank you ladies!
We need an hepa filter system (Dave just bought one July 22, man they are not cheap)
A small personal air purifier for Annika's room (we have gotten two)
We need the ducts vacuumed out
We need to paint her room , so she can have a place of her own ( Thanks mom and Sherry!)
We need to start taking her, and the whole family to a naturopathic doctor.
Annika's room has carpeting, we need to strip it and place hardwood floor or a similar product in it
We would love a central air cleaner for the whole house, but this is last on our it is a little costly.