Well we got the confirmation from Toronto. Annika is culturing staph again!!!! We can't seem to kick this bug in the butt! Annika always gets a cough when she has staph, so even before the culture comes back, I can give you the results! They seem to think we are passing the bug back and forth between us, so Dr. Tullis put me on Zithro for 2 weeks , since I have a bugger of a sinus infection. Annika is on Keflex for 42 days. Man!
I guess it could be a lot worse.
Off we go on the antibiotic routine again. At least she is still eating really well. We are playing the adjustment game with her enzymes again, Toronto and I tend to have a few disagreements about what is best for her. I am the one changing her diapers all the time and monitoring her belly sounds daily, so ????? Oh well I guess I have to learn to trust the medical end of this disease sooner or later, but overall they have been really good with us.
Thursday, December 29, 2005
Saturday, December 17, 2005
Our last trip to Toronto for the year
Our trip to Toronto Sick Kids
Thursday was our appointment for Annika. All the doctors,
therapists and nurses didn't even recognize Annika or me, that is how much we have changed in appearance since our last trip in September.
Our little girl is 6.67 kg and 68 cm long! She has doubled her birth weight! Yes! Everyone was so proud of her, and they were happy on the progress she has made.
Annika being the little charmer that she is ,had everyone eating out of her hands by the end of the visit. We got a great mucus ridden swab, so the culture should be more accurate.
We thought this would be our last trip to T.O , we plan to follow Annika's doctor to London ( 2 hrs closer to us) but they want her back in the spring to do an infant pulmonary function test. I guess Toronto is one of the only hospitals that has the machinery to do this test. So our regular clinics will be in London and once a year we have to go to Toronto for the infant pulmonary test as a part of a large study.An amazing clinic, and no blood taken, so no crying!
St. Michael's for me..........
Well I saw Dr. Tullis on the Friday(after a huge snow storm)And I was so pleased all my vitamin levels are normal(with no supplements) My pulmonary function was 98 (with a cold) and no diabetes. I have to wait on my culture and my bone density test.
Amazing visits both ways.
Dr. Tullis also stated to use the vest only when I have a cold or a build up of mucus. I met with the whole cf team, and they were really happy with all my test results. I will continue to see Dr. Tullis for one more year, than carry over to London (she has me as part of a mutation study, so she ask to continue seeing me for 2 more visits. I agreed, anything for the cause!)
Happy Holidays to everyone.
This is the first year that I haven't gotten Christmas cards out, or outside lights up.....oh well...They don't seem as important now as they did last year.
Christmas comes every year, and we have a lot to be thankful for this year, Thanks to Jesus and the support of all our friends and family, we have two amazing kids and a great marriage. Maybe next year I will get those cards out, and the lights up.
Ho! Ho! Ho!
God Bless ye all!
Love The Hassons
Thursday was our appointment for Annika. All the doctors,
therapists and nurses didn't even recognize Annika or me, that is how much we have changed in appearance since our last trip in September.Our little girl is 6.67 kg and 68 cm long! She has doubled her birth weight! Yes! Everyone was so proud of her, and they were happy on the progress she has made.
Annika being the little charmer that she is ,had everyone eating out of her hands by the end of the visit. We got a great mucus ridden swab, so the culture should be more accurate.
We thought this would be our last trip to T.O , we plan to follow Annika's doctor to London ( 2 hrs closer to us) but they want her back in the spring to do an infant pulmonary function test. I guess Toronto is one of the only hospitals that has the machinery to do this test. So our regular clinics will be in London and once a year we have to go to Toronto for the infant pulmonary test as a part of a large study.An amazing clinic, and no blood taken, so no crying!
St. Michael's for me..........
Well I saw Dr. Tullis on the Friday(after a huge snow storm)And I was so pleased all my vitamin levels are normal(with no supplements) My pulmonary function was 98 (with a cold) and no diabetes. I have to wait on my culture and my bone density test.
Amazing visits both ways.
Dr. Tullis also stated to use the vest only when I have a cold or a build up of mucus. I met with the whole cf team, and they were really happy with all my test results. I will continue to see Dr. Tullis for one more year, than carry over to London (she has me as part of a mutation study, so she ask to continue seeing me for 2 more visits. I agreed, anything for the cause!)
Happy Holidays to everyone.
This is the first year that I haven't gotten Christmas cards out, or outside lights up.....oh well...They don't seem as important now as they did last year.
Christmas comes every year, and we have a lot to be thankful for this year, Thanks to Jesus and the support of all our friends and family, we have two amazing kids and a great marriage. Maybe next year I will get those cards out, and the lights up.
Ho! Ho! Ho!
God Bless ye all!
Love The Hassons
Monday, November 07, 2005
Where is the money tree??
Well I wish I knew the answer to that one...lol! At the start of this journey, we had no idea the impact this disease would have on our pocket book. Thanks to many fantastic, supportive people, a trust fund was opened for Annika. You will find a summary of expenses for each item purchased, and for each trip made for Annika's care. A great big hug for all those people who found it in their heart to help out of family with these costs. God Bless you.
June 24th -Trip to Toronto Sick Kids
Clothes bought (we didn't expect to be staying in T.O) $150.00
Gas home $25.00
Total cost for this trip-approximately $1500.00
additional costs
Zinc cream for Annika's bum- it has to be 40% zinc oxide $9.99 tube
We use a tube in 2 days total cost to date $100.00
Pedialyte $9.00 /liter - total cost to date $9.00
Additional cloth diapers (because of the enzymes she pees more often) $100.00
Increased laundry
Lysol wipes for disenfecting surfaces- Total cost to date- $ 10.00
Lowella soap to help with diaper rash from enzymes $10.00
Total additional costs:$229.00
July 14/15 th Trip to Toronto Sick Kids
June 24th -Trip to Toronto Sick Kids
One nights stay at the Delta Chelsea $109.00
Gas to Toronto $40.00
Lost income- 6 days work for David( he won't leave his babies side)
Food for both of us for the 6 days- $400.00Clothes bought (we didn't expect to be staying in T.O) $150.00
Gas home $25.00
Total cost for this trip-approximately $1500.00
additional costs
Zinc cream for Annika's bum- it has to be 40% zinc oxide $9.99 tube
We use a tube in 2 days total cost to date $100.00
Pedialyte $9.00 /liter - total cost to date $9.00
Additional cloth diapers (because of the enzymes she pees more often) $100.00
Increased laundry
Lysol wipes for disenfecting surfaces- Total cost to date- $ 10.00
Lowella soap to help with diaper rash from enzymes $10.00
Total additional costs:$229.00
July 14/15 th Trip to Toronto Sick Kids
Hotel at Howard Johnsons ( not the greatest hotel) $65.00
Dave missed two days of work
Gas $45.00
Food $ 105.00 (for three)
Prescriptions not covered $23.00
Total cost for this trip : $775.00
A few little Extras July 22/05
Pedialyte $9.99
Lysol cleaning wipes and spray $ 12.99
Gas to and from her appointments $40.00
Wipes $4.99
Total :$64.98
Month of July Updates
Good old Lysol wipes $25.00
2 portable air puriefier systems $125.00
Filters for the furnace $60.00
Filters for the portable systems $35.00
Shipping costs for meds $15.00
Total:$260.00
September 11-13 Trip to Toronto
Two night stay at Howard Johnson's $110.00 (after discount and manager's special...lol)
Gas to and from Toronto $125.00
Food for three (mom came with us to help with Annika) $175.00
Dave has been of work since August 8th for so many tests and appointments
Total is $410.00 ( which is pretty cheap because mom paid for many things...thanks mom!)
Cleaning supplies-$45.00
Gas to local appointments-$65.00
Total for September-$520.00
October Costs:
Lysol wipes/cleaning products-$45.00
Gas to and from doctor's appointment-$65.00
Annika's Nebulizer(some not covered by Greenshield) -$75.00
A new vaccuum cleaner- $100.00
Total for October -$285.00
Costs for November-A Chest Therapy Vest $12,600.00(which is not covered by any plan)
Flooring replaced or repaired-$775.00
Vents vaccuumed and disinfected-$320.00
Talley for November so far-$13,695.
December's Costs
A trip to Toronto- 2 nights stay- $135.00
Gas there and back- $85.00 (we took the 4x4 because of the snow storm)
Food for 2 days - $105.00
Dave missed two days of work.
Tylenol-$5.00
Diapers(extra because we are adjusting her enzymes) $65.00
Cleaning supplies-$95.00
Total for December ($490.00)and the whole 2005 year-$17818.98
Wednesday, October 19, 2005
15 minutes of fame.....an unfair time limit
Well between local television news, and papers, we have been interviewed out.
It exhausts you mental, emotionally and physically re-living all the events that added up to our families diagnoses of cf. Just when you think you are on the road to healing,* bamm* a new memory floods your senses, and those wounds are open again.
Everyone gets their fifteen minutes of fame.....but that seems like an unfair time limit. Annika's diagnoses has educated alot of people on cf, and fame or no fame....I pray we can continue to do so. So as hard as it is to talk about what cf means to us, we know we have to. We have to help the world, yes the world(one person at a time) realize how devastating this disease can be to the individual diagnosed with it, and to all those that love them.
We have our up days, but still more down ones. At times it seems easier, and in other areas it is so constricting. Some days I wonder how we will get to the next hour, let alone week. Then there are actual days where for a few hours I forget about cf. Those are good moments!
Thank God for friends and family.
It exhausts you mental, emotionally and physically re-living all the events that added up to our families diagnoses of cf. Just when you think you are on the road to healing,* bamm* a new memory floods your senses, and those wounds are open again.
Everyone gets their fifteen minutes of fame.....but that seems like an unfair time limit. Annika's diagnoses has educated alot of people on cf, and fame or no fame....I pray we can continue to do so. So as hard as it is to talk about what cf means to us, we know we have to. We have to help the world, yes the world(one person at a time) realize how devastating this disease can be to the individual diagnosed with it, and to all those that love them.
We have our up days, but still more down ones. At times it seems easier, and in other areas it is so constricting. Some days I wonder how we will get to the next hour, let alone week. Then there are actual days where for a few hours I forget about cf. Those are good moments!
Thank God for friends and family.
Friday, September 23, 2005
The story of 65 Roses
The Story of 65 Roses
65 Roses® is what some children with CF call their disease because the words are much easier for them to pronounce. Mary G. Weiss became a volunteer
for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary posed the question, "What am I working for, Richard?" "You are working for 65 Roses," he answered so sweetly. Mary was speechless. She went over to him and tenderly pressed his body to hers. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say, does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.
"65 Roses® " is a registered trademark of the Cystic Fibrosis Foundation.
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