Tuesday, December 28, 2010

Home, and healing

Well last night the hospital discharged us. They came to the conclusion that Annika has a viral infection, but they are not sure where. Her white blood count is still high, but basically they can't do anything more for her in hospital, so we all decided to come home. Home is so healing. Just waiting for Annika to get her tonsils out. I am going to call her ENT tomorrow to let him know she had another hospital stay. Hopefully he can get to her soon. The doctor in the hospital stated this infection could be ENT related for sure.
We got to go to Ann's house for the Hasson family Christmas party. Annie didn't eat much, and either did I . This gallbladder is kicking my arse! Can't wait till the 21st!
It was so nice to be with the Hasson's with no squabbling, or fighting. Just lots of laughing, which was so refreshing. I actually enjoyed myself. Joelle idolizes Annika. We got her a princess shirt, just like Annie's for part of her Christmas gift. Annika had hers on, and when Jo Jo opened hers, she insisted she have hers on right away. It is so cute. That is exactly how Annika used to be with my niece Dawn. It is cool to see the generation circle continue.Baby Tess is getting so big, and cute.The kids got spoiled as usual. But in a good, practical way.
Today I am resting in bed. My body is not well. I feel so weak. It is very frustrating as a mother to not be the caring, nurturing mother you want to be. When you are in pain, and weak, it is hard to play even Lego.I hate my body, I hate this disease. I see myself slowly going on a downward spiral. I look at myself in the mirror and think, who is that woman looking at me. The dark circles, the pale skin. I used to be so vivacious, what happened to me. What did this disease do to me. What will it do to Annika. I am struggling with those thought. I couldn't help but think every other child is home with their families enjoying family and friends. A good Christmas dinner. Visiting households, playing with toys. My daughter and me are puking, fighting fevers and body aches. Fighting this disease. How is that fair. How is it fair that my son has to watch his sister scream out in pain, or hug the toilet. How will this disease effect his life. How is this fair to my husband, who when he married me , had NO IDEA what his future held. How does it effect his mental and physical state? How is this fair to my friends, who get neglected. I understand how they feel cheated. How this disease takes from them also. How is this fair to anyone.
I need those friends, I need my family, but what can I offer in return.
Today is my father's 69th birthday. Annika made a birthday card for him, which I know will be the most treasured gift he will get today. Those kids are my father's whole world. I honestly think they are the reason he goes on. We got him some presents, and Dave is going to take the kids to Walmart to get their final gift with their Christmas money. On the way home he is picking up Chinese food from our favourite restaurant for dad's birthday. So I will be trekking over there tonight in pj's, how insane is that.
Don't get me wrong. We have lots to be thankful for. We have wonderful family and friends. We were all together Christmas morning, and are now together to celebrate another year papa is here. We have lots of love in our life. We have a roof over our head, we have a vechile, and health care. We have much much more than some. I just can't help be frustrated with it all. Thank you to those who visited Annika in the hospital . Annika loves those visits. Thanks for the phone calls and emails. They do help, honestly. And thank you most to those who helped Dave and I with the animals and Parker. He is such a great kid!
Thank you for your love.

Monday, December 27, 2010

Feel like I have been hit good on Boxing day

Annika's white blood cells came back high, showing infection somewhere in her body. CT scan is negative for appendix. Swab results for cultures are still pending. Annika has been up half the night with stomach pain and nausea. She hit 39.1 again at 2:30 am. I have been up since then. She has been tossing and turning, yelping out in her sleep. Never getting totally comfortable. We have been giving her Tylenol and ibuprofen , they have seem to be able to break the fever. Let's hope it stays at bay. She is totally soaking wet from sweating. I wish I could take away her pain.....lol. Like I don't have enough for myself. Gallbladder is my worse enemy, all food triggers an attack now. Sucks to be there mentally for your child when the pain is distracting you. I am doing my best. A few weird circumstances this hospitalization. Crazy universe.....lol. We will see how these weird events pan out. Hoping we can get some answers soon. Not sure if Annika will make it to Grammy Annie's Christmas party tomorrow. As long as Parker and Dave get to go, they need some kind of normal over the holidays.....grrrr.

Sunday, December 26, 2010

Our not so Merry Christmas

The day started off as an Christmas day with to eager young children. A very excited son , shaking me awake and begging to wake up his baby sister. Off Dave and I go , putting the kettle on, letting out our four legged fur babies and calling mom and dad to let them know the kids were up and waiting for them to tread the 50 ft to our back door. ( For those who don't know , my parents live on the the same property)
Parker and Annika were content to fish through their stockings until Gramma and pappa arrived, with presents in tow. Annika had been up from 1am to 4 am coughing, and I along side of her with nebulizer in hand, and clapping palms to do physio therapy. I had already been up because my nasty, useless gallbladder has been reeking havoc on my system. ( I have a scheduled surgery to remove it Jan 21st) For a little girl who didn't have much sleep, she had a fair amount of energy. Ahhh to be young again.
So we giggled and laughed, and savoured the ripping of present wrapping, and the sound of the logs crackling in the fireplace. The animals were chewing their rawhide treats from their stocking , and the kids were content to gaze upon their new treasures. My mom and I were preparing brunch, and dad and Dave where relaxing( well if you call relaxing trying to free all the new toys from their packaged prisons..lol)
After brunch, mom and dad went home and I put the bird in the oven. I went and laid down and Dave in the kids were watching some new Christmas movies.
I got up around 4 pm, a nice hour snooze and noticed Annika asleep on the couch. I just figured she was tired from the sleepless night. But Dave told me she had complained she wasn't feeling well. When she got up , she was on fire! Burning up. We took her temp and it was 39.....so Tylenol in and gravol in , because she was complaining she was nauseated.
Then the fun began. So in between getting dinner ready, I was putting cold rags on her brow, giving her more fever control, hooking up Gatorade in her feeding tube. Did I mention we had dinner for my family.....argh. So my mom came up early and help with the dinner, in this time I got Annie comfortable. My dad wasn't feeling good with a cold, so we sent a plate home for him, and mom , Dave, Parker and I tried to enjoy dinner......did I mention my gallbladder sucks...lol. Annika started crying during dinner from my bed, so off I went to comfort her while Dave and mom cleaned up. I had made a vanilla birthday cake on request from my kids for dessert. They wanted to sing Happy Birthday to Jesus. SO once Annika was calmed again, Parker was pleading to have cake. Why should he always suffer because of cystic fibrosis. So him and I held hands. Said a prayer of thanks and then my mom joined in with us singing HAPPY BIRTHDAY JESUS.
Parker got his cake, and I got to see a sparkle in his eye.
Annika started really complaining at this point, so after another dose of ibuprofen ( we have been alternating Tylenol and ibuprofen every 2 hours) her fever had not broke, so we gave her a bath in tepid water. She screamed like a banshee, but in a short while the combination of the meds, the bath , and g-tube hydration broke the fever.
Around 8:30 she was pleading to watch a movie with me and her brother in my bed. So we put on The Sorcerer's Apprentice. Annika was happy, Parker was camped out on the floor, and I was in my new pj's. Life seemed good. Annika even asked for some cauliflower and dip and some plain mashed potatoes. Easy, peasy, no problem.
So kids have both had a snack, Daddy is snoring on the couch, and we are about 3/4 way through the movie. Annika states she is feeling dizzy and tired, so I tell her close your eyes and fall asleep. She does.
So Parker and I are trying to finish this movie, which by the way is pretty decent. And we both jump out of our skins when Annika wakes up screaming in pain. She is clutching her lower right side, screaming it hurts. Shaking uncontrollably and yelling it hurts, and i can't stop shaking, mommy why am I shaking. Her eyes are dilated, and she is convulsing. I scream at Dave to call 911. Parker is holding Annika's hand, the whole time rubbing his sisters hand while she tells him through tears it hurts Parker, it hurts Parker. Parker is crying, but not leaving his sisters side. I am holding her tight, because she won't let me put her down. Dave is calling my parents to come get Parker. And I now notice that Annika's fever has spiked back.
Her heart is racing, she is shaking, screaming in pain, and on fire.
The ambulance was there in 5 minutes. The EMT's stated her right side abdomen is rock hard, she has a fever of 39 and her heart rate is over 200. We are rushed to Leamington hospital. They see us right away, get her hooked up to IV and take blood.
Her white blood count is really elevated and they hook her up to zofran and rochephin. More Tylenol.
Leamington calls Met, and we transfer care. We managed to get the pain to stop, and break the fever and here we lay for the night. More blood in moments, and a ct scan or MRI tomorrow.
So there we are. That's our Christmas in a nutshell.
I will post more as I know more.
Hugs to all my friend and family.
We are in room 3228 on the 3rd floor at Met hospital in Windsor. Merry HO HO HO!

Saturday, December 11, 2010

Surprise admission to Met hospital

Well around 7pm on the 9th, Annika started vomiting out of the blue. And this started the whirlwind of the tornado we are participating in today. When it stops, who knows. Annika vomited at least a dozen times, with severe right lower side pain. With cf the first thing that popped into my mind was bowel blockage or appendix attack. So off to Met we go, as there was recently a huge snow storm in London where Annika's cf clinic was. We got to see a doctor quickly, they did blood, xrays, and a general work up. The xrays came back fine, and the blood had elevated white cells. Once we got so gravol in her IV , he stomached seemed to settle down. The doctor said we could go home and come back in the morning for an ultrasound. Off we went home, but shortly after arriving home at 1:30 am the vomiting started again. Then within a few hours a high fever and more stomach pain. So off we go to the ER again at 6:30 am. Once we arrived at the ER , Annika's temp had hit 40 degrees, normal being 36.9. They rushed us in, got her hooked up to an IV, did throat swabs, more blood, more xrays, and admitted her to the peds ward. We were up in our room by 3pm on the 10th. The new ped doctor is great. He expressed his concern on how lethargic she was, how dehydrated she was, and how high her fever was. We had to wait on blood cultures and throat cultures. He put her on an IV antibiotic, gravol, Tylenol, and ibuprofen for the pain in her side and now in her throat. She continued to have a fever through the night, and side pain. She is also covered in a rash.They ruled out the appendix, and are now focusing on her tonsils which are so swollen that they are obstructing her throat. The doctor thinks not only does she has repeat tonsillitis, but a lymphatic issue. Her tonsils and adenoids need to be removed. We should be seeing an ENT tomorrow. We now have her on ondansetron 2mg every 8 hours for vomiting. It has worked like a charm. She is eating in small bits because her throat is very sore. This drug they give to chemo children, and works great. The IV antibiotics are ceftrioxime 1gmg every 8hours. This drug has seemed to help. Annika today is a happier child. While her tonsils are now huge, the throat pain, and side pain are better. So the goal is keep her hydrated. Keep her out of pain. And the best part......and ENT is coming to see her tonight or tomorrow, we are pretty sure we will be getting her tonsils and adenoids out. The doctor just told me that some of her cultures and newest blood results are back. Her body is colonized with strep. Poor baby. No wonder she crashed so hard the doctor said, in addition to the tonsils and it is a recipe for trouble. So a few more days in this place, not too bad. She is in room 3227 at Met hospital if anyone wants to call up. And anyone coming up to Windsor, and wants to bring up to MISO soups for her and myself. You will be embraced with a huge hug....I will update as I get updated. Take care.
Hugs from Kimberly and Annika

Tuesday, November 23, 2010

Take them out please!

So we have been dealing with repeat ENT infections with Annika since May of 2009. Since then see has had 11 tonsil infections and 4 sinus infections. Yep that is right people 15 infections in a year and a half! So you can imagine our frustrations with our cf clinics choice of ENT doctor. We are now seeing another ENT , he is new to the cf clinic, and I am hoping on our appointment Dec.8th, he will schedule Annika to have her tonsils and adenoids removed. Cross your fingers. She just finished a round of Clauvilin 400mg 5 days ago, and guess what she has another infection. Tonsils full of puss and bleeding. Good thing is we go to our cf clinic tomorrow, let's see what happens!See how nicely they touch together at the back of her throat.

Monday, August 30, 2010

Annika's Make A Wish Party

Well it has come and gone. We had a decent turnout, and some surprises along the way. Family and friends we didn't expect to see. And the dedicate followers of the diva herself.....Princess Annika. Great weather, lots of laughs, swimming, and good food. I am still doing the tally of the coin collected, but I am guessing Annika raised close to $500 for Make A Wish. I am so proud of all my friends and family for donating their spare change. Thanks to all for coming out. Less than 3 weeks till our very own Make A Wish trip to the sunny state! How Exciting!

Wednesday, August 04, 2010

Day one at London's Children's Hospital

We arrived into London at 1:30pm and got checked into our hotel room . Ronald MacDonald House was full so they put us up at the Best Western, which was greatly appreciated!. Right away we have pre-admission, then on to cf clinic. Her pulmonary function test doesn't go so well and the doctors are surprised to see a double eye infection, fluid in her ears and incredibly swollen tonsils. Annika's eyes are swollen, so she looks very tired. Actually she is tired, she fell asleep in the car for the first time in a long while. We have an ENT appointment at 10:30 am on Monday. The doctors seem very concerned about her ENT infections, lets pray we can get this under control. She is on the schedule for gtube surgery at 5pm tomorrow, but it will all depend on her little body. The cf doctor changed her meds to a really really strong antibiotic, and she has been eating a lot of ice to help with her sore throat. Hopefully our night goes well tonight. I have Ventolin ready just in case. ARRGGHH! Sweet dreams baby girl, sweet dreams all.

Monday, August 02, 2010

Oops there it goes! G-tube today , gone tomorrow.

What an insane day yesterday was. It all started with Annika coming into the living room crying, showing me her stomach. There was the cutest little hole peeping back at me. I guess this should be the time I remind everyone that there shouldn't be a cute little hole looking at me from my daughters stomach. In that cute little hole should be a perfectly functional MIC-KEY button, or some know it as a g-tube button. The MIC-KEY was MIA. Not a factor I was preparing for this fine Saturday morning, just before Canada's holiday civic weekend. GREAT!
So sending Parker back to Grandma's and papa's, we pack Annika up to head towards London Children's Hospital ( YES children's hospital, please keep this in mind for the ending part of this little diddy) Windsor advised us that they were not equipped to handle a re-insertion of a MIC-KEY on a holiday weekend.
We estimate that the tube fell out somewhere between 3 am and 10 am when Annika got up. She was up at 2 am coughing like crazy, so Dave had done a bedside nebulizer treatment to help aid in her cough. He had remembered seeing the cute little MIC-KEY in that cute little hole then.
So 11am in the morning, we are off to London Children's Hospital ( remember this) and once arriving, we get admitted into the pediatric ER.
We are introduced to our nurse, a short sassy, very opinionated lady called Kim. Do we know any other Kim's like this.....lol. Well let me tell you this Kim makes me look like a saint! This chick was a bitch with a capital "B".
We told her about Annika loosing her g-tube and how we tried re-insertion several times at home before venturing in to the ER. We also advised BitchKim ( oh yes this is her name from now on) that Annika has had a chronic ENT infection since October of 2009. She has been on several oral antibiotics  and IV since then. We let BitchKim know that in the last three days Annika has had fevers, night sweats and her cough has been horrible. Did I mentioned that both Dave and I went through this scenario several times with both her and the attending doctor. So this is a check in a report done by 1:15 pm. Great time. How lovely.....wrong
So the doctor looks at her. She checks out her cute little hole, but doesn't try insertion. She listens to her lungs. Checks her ears, nose and throat. She decides to do blood levels , xray and then g-tube. Ok tests done in the wrong order, but does anyone listen to us. NO! I am now being stared at like I am supreme Bitch mom, and I am enemy number one. Why do you ask......well I ask BitchKim if we can place EMLA on Annika's blood sites. EMLA is a product that numbs any skin it comes into contact with, and is used to help children to handle the fear of needles. No pain, no fear, right? I guess BitchKim hasn't put this simple link together. She denies me the EMLA flat out. "We don't use EMLA here, we do IV's all the time and we are good at it" I then reply, "I don't care how good you are, a needle is a needle and she is not an easy pick, so I would like the EMLA" After the attitude from hell she stamps off to talk to the surgical doctor on call in the ER. Fifteen minutes pass and another nurse comes to talk to us. "It is general practice that we don't use EMLA here in the ER, it can take an hour to take effect" So after reminding her that Annika is not an easy pick, and that this ER doesn't seemed to concerned about getting her g-tube in, I agree to a pick.
So we continue to hold my five year daughter down, who is screaming "I want Harry Potter cream!" This is want we call EMLA at the Hasson household , because it has magical powers. First attempt at IV insertion, blown vein, second attempt, blood collection and then blown vein. This was my cut off limit. I told BitchKim get the doctor, we need to give Annika oral sedation so we can get an IV in and g-tube inserted. More foot stomping and hissy fits....lovely.
Within minutes a new pediatric surgeon shows up, looks at Annika's little cute hole and attempts a g-tube insertion with no numbing or sedation. You can imagine how this went. Yeah, lots of screaming, and my daughter looking at me saying " you told me I would be asleep" Imagine hearing this again and again. Yes I was crying. So finally I screamed...." ENOUGH! " Get her some oral sedation. The doctor looks at me puzzled and stats, "Is this what you want , because it will make things easier? "WHAT! This is where I start to realize BitchKim has a total attitude and high than tho syndrome. She has not been relaying on our requests and concerns to the doctors. NICE!
Wait it gets better.
So we give Annika Nebutrol 90mg, and in minutes she is sleeping like a baby. Yep, out cold. Imagine that a simple swallow of a clear medicine and my baby girl is blissfully sleeping.
So the doctor makes an attempt to insert the MIC-KEY. With no luck, so much time has passed since it has come out the cute little hole. So we have to put in a Foley catheter, size 10 a whole 2 sizes smaller than her MIC-KEY. A temporary fix.We are to call Tuesday, after this blessed Civic holiday, to contact xray so the tube can be scheduled to be inserted under sedation and in radiology by experienced technicians and doctors.
Then the doctor proceeds to advised me if we would have brought her in earlier, there would have been a good chance that the MIC-KEY would have been inserted. WHAT!!!!!WHAT!!!!!WHAT!!!! I told her why did it take 5 hours to get to our bedside. WHAT? WHAT? WHAT? She says. You mean you have been here 5 hours and I just got the paged 10 minutes ago......HHHMMMMM, as I
 stare down BitchKim. I told her we weren't sure when the tube fell out, but we have been here since 1:15pm, considering we didn't find the missing tube until 10 am , and we live 2 hours away, I would guess that was pretty good response time, wouldn't you? Well to say the least doctor was pissed, we were pissed, and now BitchKim is pissed because she knows she is in a crap load of trouble. As we continue to talk to the doctor about future plans for Annika's g-tube, and remind her that we have been here since 1:15pm, BitchKim pipes up from across the room "You did state that it was possible that the g-tube had fallen out between 3am and 10 am" Ok this is where I lost it. I proceeded to yell at the nurse"If your attitude had been better, and you actually stopped and listened to concerned parents instead of fighting them 100% on every decision, than maybe the doctors would have been notified when they should have been!"Then I
 proceed to tell her"You aren't even a part of this conversation "I told the doctor this whole experience was horrible and I have never met such medical staff incompetent of getting their shit together. She apologized for others errors and gave us her personal line to call on Tuesday so her secretary could personally handle Annika's admission for the g-tube insertion. Nice Lady!
So BitchKim disappeared for about an hour, which at first I thought was her lunch, but after she returned and she didn't talk to us much, I am assuming the doctor had a conversation with her.
So we are advised that Annika's xray, blood work, and urine are clear and we are just waiting for her to wake from the sedation.
With a little coaxing, we get those baby blue's to open.
BitchKim comes and tells us that we can leave once the ER doctor comes and discharges us.
So we get introduced to a new ER doctor, because I remind you we have been dealing with this mess now 8hrs. She is a nice lady with a warm smile. She continues to remind us to call Tuesday to book the MIC-KEY re-insertion, and that everything is a go. So I ask her " Do I call our cf clinic Tuesday also to deal with the cough and fevers Annika has been having." Wow! Did I get one hell of a surprised look from her. And of course, on cue, Annika starts hacking up a lung. Then this doctor goes on to tell me that she was not advised of a cough, fever, night sweats, and the repeat infections.
I told her Dr. Price was on call and I thought someone already had called her. NOPE! So this wonderful lady goes off to look at xrays and to talk to Dr. Price.No sooner did she disappear around the corner did BitchKim approach us asking" Is there a reason why you are still waiting here?" Ok now my anger with this chick is almost at the breaking limit. So in response, in the most sarcastic and childlike voice I could manage I reply "Well you see, I have a daughter here lying on this hospital bed coughing up a lung, no correction two lungs. And it just so happens that the doctor was never advised about this issue, even though I told you she has been coughing like this for over a week, running a low grade fever, and having night sweats. So this wonderful doctor is actually going to call our respiroligist to get a second opinion, something you should have done hours ago. So let's just wait to see what the doctor has to say OK??" Boy did I get the death stare. But it was so worth it.
This new doctor returns a few minutes later after talking to the doctor, and looking at xray taken that day and the one on her previous cf clinic. She advises us that she is pretty sure by the xrays and her cough that Annika has micro pneumonia. NICE! So if I wouldn't have asked questions, we would have gone home to have Annika's cough get worse, and cause some possible scarring in her lungs. Stupid nurse.
So to say the least BitchKim is being reported, and we are dealing with a 10 inch tube hanging from my daughter's stomach until we can get the MIC-KEY put back in. So for sure a hospital admission for Annika for the MIC-KEY placement and probably for IV treatment for the cough. What a wonderful ER visit. Welcome to my world of cf. I will keep you posted.

Sunday, July 18, 2010

Little Riding Hood.

Annika loves her therapeutic riding lessons. She has been riding since last fall. This past Friday was the first time without anyone holding on to her, she was on an English saddle vs. a Western saddle and she was starting to learn how to use the reins. Her balance surprises me. My little horse girl!We use Spectra riding in Leamington. They are fantastic with her.
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Saturday, June 26, 2010

London Surgery Went Well!

Well Annika's scope on the 22nd of June went well. No lesions, or ulcers. Bowel and stomach look great. Her stomach is climbing up her esophagus, so this could be causing the pain. Crazy weird. Dr. Bax put her on Pariet and we are hoping this will do the trick for the stomach pain she complains about EVERY day. They are not sure if she will out grow it or not????Time will tell. As for everything else. Annika blew a 141 FEV1 on her last pulmonary function test. Can you say crazy fabulous! I am proud of my girl!

Friday, June 25, 2010

In memory of Conner Jones, a new cf angel.

When God calls little children

to dwell with him above,

We mortals sometime question

the wisdom of his love

For no heartache compares with

the death of one small child

Who does so much to make our world,

seem wonderful and mild

Perhaps God tires of calling

the aged to his fold,

So he picks a rosebud,

before they can grow old.

God knows how much we need them,

and so he takes but a few

To make the land of Heaven

more beautiful to view.

Believing this is difficult still

somehow we must try,

The saddest word a mother knows

will always be "Goodbye."

So when a little child departs

we who are left behind

Must realize God loves children,

But Angels are hard to find.

-Origin Unknown

Tuesday, June 08, 2010

The Chosen Mother

The Chosen Mothers

by Erma Bombeck

Most women become a mother by accident, some by choice

and a few by habit. Did you ever wonder how mother's of

children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over earth

selecting His instruments for progagation with great care and deliberation.

As He observes, He instructs His angels

to make notes in a giant ledger.......

"Armstrong, Beth, son, patron saint Matthew"

Forrest, Marjorie, daughter, patron saint Cecilia"

Rutledge, Carrie, twins, partron saint Greard."

Finally, He passes a name to an angel and says, "Give

her a child with cancer." The angel is curious. "Why this

one, God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer

a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel,

"I don't want her to have too much patience or she will

drown in a sea of self-pity and despair. Once the shock and

resentment wears off, she will handle it."

"I watched her today," said God. "She has that feeling

of self-independence that is so rare and necessary in a mother.

You see, the child I'm going to give her has it's own world.

She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel.

"No matter, I can fix that. This one is perfect. She has just

enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child

occasionally, she'll never survive. Yes, here is the woman I will bless

with a child less than perfect. She doesn't realize it yet,

but she is to be envied. She will never take anything her child does for

granted. She will never consider a single step

ordinary. I will permit her to see clearly the things I see....ignorance,

cruelty, prejudice....and allow her to rise above them."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smiles and says..."A mirror will suffice."

~walk softly and discover~

Friday, April 23, 2010

To All You CF Mommas

I don’t know where to start this

So I guess I’ll use the start
The part where you had a sick baby
I know it broke your heart…
All the medications
You had to make me take
The clapping and the enzymes
The strength you sometimes faked…

Through my teenage years
I know I was a pain
Thank you for putting up with me
Though driving you insane…
Every time you’d hear me cough
I know it would stop your heart
When I’d get an infection
It must have torn you apart…

Now that I’m a mother too
I am always looking back
I can’t imagine what you’d go through
Listening to me hack…

Thank you for teaching me
That CF was not an excuse
And making me take my pills
When I tried to refuse…

You are my CF momma
No words can explain
The strength you possess inside
That gets you through the pain…
That strength you had to get up
In the middle of the night
To bring me a glass of water
And be there by my side…

To teach me to love others
As much as I love myself
And sometimes you taught me
To put my pride up on the shelf…

I know sometimes you blame yourself
For that gosh darned faulty gene
I want you to know that I wouldn’t
Change it for anything…
That gene made me who I am today

A strong amazing girl
I wouldn’t change one thing
About my CF world…
I have met terrific people
I am helping to do amazing things
All because of that one
Gosh darned faulty gene!!!

Posted on Breathe 4 Tomorrow

You Know You're A CF Parent When ....

*You've used puppets, toys, sung, danced, pleaded and generally made a
fool out of yourself all in an effort to get your child to eat
*You've stockpiled enough applesauce to start your own factory
*You find loose enzyme beads literally everywhere: the car, your
clothes, on the ceiling (not joking)
*You count more calories than sheep
*You add salt to everything and use butter as a general cooking base
even when a recipe doesn't call for it
*You panic when your child sneezes
*Your child coughs and you immediately chant "albuterol four times a day!"
*You check websites daily for news about a cure
*You're house has more medications than the pharmacy
*You've actually found yourself explaining a medication to the
pharmacist, instead of the other way around
*You've considered dying all your child's clothes yellow or orange to
hide the vitamin stains
*Your medical bills are looking more and more like the national debt
*You've prayed for your child to be fat
*You've actually found yourself exclaiming angrily in the grocery
store upon discovering extra-cheesy mac doesn't have more calories
than regular (sadly true)
*You know what the poopie dance is, and you've done it
*You've had long involved discussions with other parents about poop
*You've started referring to everything in acronyms
*You can describe the hospital's daily menu in exact detail
*Purel and Lysol are in every room in your house
*You've considered life-long quarantine for your child
*You've told someone off for coughing near your child
*You have multiple doctors on speed dial
*You've memorized all the doctor's phone numbers but can't remember
your own
*You refer to CPT as your child's nightly beating
*You've bought a fancy baby scale for peace of mind
*The pediatrician sees you more often than their own staff
*You tend to refer to life AD & BD, After Diagnosis and Before Diagnosis
*You've cried over half a pound
*Your child comes with an instruction manual if you leave them with a
*You've forgotten what normal is
*You find empty enzyme capsules in your pockets & in the seats of your car
*Your child wears a neb mask more easily than they do a hat
*Your child has started trying to do their own CPT
*You've forgotten to put meds in the nebulizer and actually let it run
several minutes before discovering the problem
*Your child's vest machine has logged more hours than your car has miles
*You think it's normal to spend four hours at the doctor's office for
a regular visit
*Your child could start her own medical practice, she has so many
doctor's kits & medical related toys
*Half of your child's vocabulary consists of medical terms
*Your child routinely tells complete strangers all about the "icky
germs" in her lungs
*You fear Chucky Cheese and other similar festering germ pools
*You've taught your child to run away if another kid coughs or sneezes
near them
*You've developed sick child radar and can instantly spot a runny nose
from across the room
*You own more children's movies than Blockbuster because they're
useful for treatment time and during those long stays in the hospital
*Your child begs to do treatments so she can watch tv or do a special
*You have entire drawers and cabinets devoted to your child's medical
*You've replaced the hand towels in your home with paper towel dispensers
*You've learned to calculate max daily enzymes by body weight in your head
*The nurses at the hospital and doctors office know you on sight
*You own a medical-grade stethoscope and have learned to use it
*You own every kids book about doctors and hospitals that has been written
*You begin most phone conversations by stating your child's name and
date of birth

Sunday, April 18, 2010

Great Strides Walk....slowly approaching!

Annika's Dancers Great Strides Team
Well Annika's Dancers. That time has come again. Yes that's right, The Great Strides Walk. Is it unrealistic to aim for $4000.00 from our team? Can we not fight for this goal. If we can acheive this goal I personally will by the pizzas to go with the free Spitfire tickets, and we can celebrate as a team! Let's GO ANNIKA'S DANCERS, Let's GO! Come on team! If you haven't signed up on the website, go now please. Online pledges are a great way to ask for help from people you don't see everyday. I posted this link to my facebook page, and $400 in pledges later......? Come on fight for a cure, and a great night out!

Monday, March 01, 2010

Too picc or not too picc, is this the question?

Annika has had a picc line for three weeks. We just completed a regimen of IV antibiotics last night! Yeah! So now we are off to London on March 2 to meet with and ENT, and Annika's cf doctor. We will find out if the picc line is to be kept for future use, or removed. Annika may need surgery on her sinuses, and I know Dr. Mataeo's wants to preform a bronch. He will decide when the bronch will be done based on what the ENT has to say. Hopefully we can convince the GI doctor to see Annika on the 2nd also. I will keep you posted.

Wednesday, February 17, 2010

An honourary clown!

During Annika's last hospital stay she was made an honourary clown. While the clowns were visiting with Annika she discovered what made Merry Kay's farts. A whoopy cushion in her jacket pocket. So she was sworn to silence ( but mommy wasn't....lol) They gave her a honourary clown nose and made her pledge never to tell their secret. It was the cutest thing ever and then they sang her the cow song. What gem's these clowns are . They sure did break up the monotony of the day

Annika and her hospital adventure

As most of you who follow this blog already know, that we admitted Annika on February 7, 2010. She has had a sinus infection since October and none of the oral antibiotics that we have given her have worked. The infection was getting so bad that she had headaches, green discharge, and was coughing non stop from the drainage. It was starting to effect her physical activity. Our peds doctor admitted her and we started IV meds. By day two we had a picc line put in. Every child and parent have a way to distract their child from the pain of a needle ( or should I say the fear of a needle because Emla numbs the area) Annika's newest distraction is writing on my arm while the needle is being placed, or blood is being taken, this included finger picks for Tobi levels. This has worked well and is easily removed with hand sanitizer. A small chore, and a very small price to pay for my child's anxiety level to be low. While she was at the hospital we had great nurses and doctors. The pharmacy team was awesome, but the child life team was amazing. Thanks to Jen and Annika's new best friend Lisa. They made this stay so much easier. We did lots of crafts, and even decorated our face masks for a chuckle. We were sent home on the 10th and are doing home IV meds. until the end of February. Thank you for the emails, visits and phone calls. Dave and I appreciate all your love.

Friday, January 29, 2010

Flush it Away

Annika has been fighting a sinus infection/cold for a long time. She was on Cipro for 6 weeks, and once done the sinus problem came back within a week. We had her lungs checked out and she is clear as of right now, but her sinuses drain so bad that she is coughing a lot! So now we have been doing sinus flushes every other day to start. Annika was so proud of herself. She did the flush all by herself. Only a parent who has had to deal with sinus flushes would understand how huge that is. She had to take a special sinus squeeze bottle filled with saline solution and squeeze a rush of this solution up one side of her nose, and blow it out at the same time from the other nostril. After inhaling once, she figured it out pretty fast. When done she gave me a high five and laughed. "I can breathe mommy"I am so proud of her. She faces each challenge head on, as it comes. She is a true cf warrior!

Saturday, January 23, 2010

Angels of Hope

This is a beautiful drawing composite that Annika did for a fellow young lady waiting for her second lung transplant. Eva Markvoort is presently in the hospital , not feeling very well. Annika watched her documentary 65 red_roses on The Passionate Eye and fell in love with this loving cf warrior. We are sending her a care package for her wall of hope. Eva decorates her home walls and her hospital walls with tons of drawings and letters sent by caring people with and without cystic fibrosis. So if you have a spare moment, drop this young women a letter or drawing of love. It brightens her day, especially when she is being poked and invaded by needles and tubes. Hospital walls are boring. Let's give her something to smile about. Add Eva to your prayers for another set of lungs. Her lung function is only at 15% , and pray for the family that makes the choice to donate organs.

Eva can receive her mail at : Eva Markvoort

217 Third Avenue

New Westminster BC

V3L 1L9

Her family and friends will get the packages or letters to her in the hospital.

Also check out her blog at:

And her documentary can be found at:

Share the love ! God Bless

Friday, January 22, 2010

New Year , new outlook?

Ok so the gifts are all put away in their proper place, we have placed the decorations in their appropriate box up in the attic. I have visited the ER 3 times, but nothing CF related. What's new?

Dave is actively looking for a job in the personal support worker area, with no success yet. But we are praying.

Parker has been well, and is really into lego anything. Annika is now addicted too! She builds lego with him, if he promises to play house or dolls with her. It's a far trade off.

Annika has a wicked cough right now, and green oozing from every hole in her head, so I think a trip to the cf clinic is in call for. Wish us luck!