Friday, July 22, 2005

I'll huff and I'll puff.........

Well this is the first chance that I have gotten to get to this site in the last few days. It has been insane around here! Annika's swab test came back growing Staph, and minor yeast. Not a big deal unless she is showing symptoms. Well our luck has it that Annika is coughing like crazy, really mucusy, and has an ear infection from this nasty little bug. We had to start her on Keflex and Zithro. Two antibiotics. great!
Parker has been vomiting for 24hrs, from this little bug too, but the doctor has left him to fight it on his own.
I am exhausted from no sleep, cleaning puke and pounding the mucus out of our baby girl. I have literally watched her turn purple twice now. I hate the fact that babies only have two ways of getting mucus out of their little bodies. Puking ,and swallowing and pooping it out. Mine has mastered puking. And unfortunately half her feeding keeps coming up with it.
I am trying so hard to keep her weight on.
I hate CF!
I have to give her enzymes before every feed, keflex 4 times a day, zithro one time a day , ADEK one time a day, sodium mineral mix five times a day, and the occasional dose of tylenol. This sucks.
I pray for strength, I pray for patience, I pray for my baby girls health.I pray for more weight gain, I pray that she can breathe!
If her cough doesn't get better tomorrow, the doctor is getting a call
Pray for Annika please!

Sunday, July 17, 2005

Trip Number two- Toronto July 15/2005

A second trip to Sick Kids is finally completed. We went caravan style. Two car loads of people who love and adore Annika.
David's twin, Dennis and his fiancee Angie were going to be tested for carrier status, along with David's mom Ann. We should get the results for them in less than a month.
Parker and Annika both had a sweat test done, and Annika had to have her blood done again to check for levels.
I hate seeing her having to be poked and prodded like cattle. I tried telling the blood technician that you can't get blood from her veins in her elbow joint, but she wouldn't listen. She blew the vein in her right arm. Stupid woman. So after several threats from me, a new nurse came in, took the blood from where I told her, and first try, voila!
I have no patience for medical staff that chose not to listen to me.
We met with the dietician, and she wanted Annika put back on the sodium mixture. This should be fun , since she pukes it up. Her sodium, chloride and potassium levels were low,(but her albumin is normal ) so we have to do a repeat blood test in a week to see if they climb.
Also the dietician stated that they normally do not put babies on the beaded enzymes, because they don't gain weight.
Our doctor here in Windsor changed her over to them. The dietician was surprised to see that Annika gained 14 ozs in 2 weeks and grew 1 cm. I asked her how much more weight gain does she want????lol. So she agreed to keep her on the beads. No more sore nipples for me, or diaper rash for her!
The doctors said they were concerned about the low levels of sodium, chloride and potassium, but as long as it stays the same, or climbs, they are fine. Dr. Sweezey said it is normal to loose those elements in the summer.
So we got to come home.
They didn't have the sweat results yet, or our genetic coding done . It was a stressful ride home.
This last appointment was long and emotionally draining. Everytime we go to Sick Kids , we wonder if we are coming home. The expenses are adding up, and the stress level is high.
We got home about 11:00 PM. and I put Parker to bed , Dave was listening to the phone messages.
Dr. April Price had called saying Parkers sodium level on the sweat test was below 10, a definite negative for CF, but Annika's levels had climbed to 82, a definite positive. I stood outside Parkers bedroom door, sobbing like a child.
I cried for the relief I felt , knowing now that Parker was negative ( a result I already knew in my heart ) , I cried for Annika finally being confirmed positive , and I cried for our future and the unknown. I feel so defeated, and so exhausted.
And the dance goes on..............

Thursday, July 14, 2005

Our CF family

We just came back from meeting a local family that are surviving CF. There first born was diagnosed with CF 16 years ago. It was nice to see a positive side to this disease. A loving family, that live for the moment. A supportive family that embraces all this world has to offer. A faithful family, trusting God to decide the way.
I thank them for all their help, and acknowledge them for all they have done for the CF community, and for us.
We pray that we can be as supportive to our daughter as she dances with this disease. I hope she continues to lead.
Thank you for your advice, your compassion, your open ear, and your shoulder to cry on!
I hope I can return the favour full circle for someone else in need.
God Bless you, and your wonderful family.

3 children, first born with CF, the latter two free and clear.


The Hassons

Off we Go....

Well we are off for another appointment at Toronto Sick Kids. We are making the trip this time with our oldest child, Parker. Both he and Annika will be getting a sweat test. Her to recheck her salt levels, and this will be his first test to rule out CF. The doctors do not expect it to be positive. Please keep him in your prayers . Also Dennis, Dave's twin, Angie, Dennis's girl friend, and Ann, Dave's mom are coming to get tested for the CF gene, and to participate in the CF research . My parents and brother are going to do the testing at home.
It should be a crazy start to this weekend. We are going down on Thursday night, since our appointments are early in the morning. So another hotel stay, and more dining out. More picking and prodding of our babies, and more waiting for results. This is the tiring side of CF. Unanswered questions, testing, waiting, the unknown!
Besides always putting something foreign in my daughter's mouth, this is the part I Will my daughter pass the tests, will she gain weight, will she have an infection, or be exposed to one at the hospital.....blah, blah, blah. My faith in God is the only thing that keeps me strong. That and my wonderful husband, children , family and friends.
I will update you on the results.

Tuesday, July 12, 2005

The Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger."Armstrong, Beth, son. Patron Saint, Matthew.""Forrest, Marjorie, daughter. Patron Saint, Celia.""Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity." Finally he passes a name to an angel and smiles. "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel."" But does she have the patience?" asks the angel."I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it.""I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."But Lord, I don't think she even believes in you." God smiles. "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 will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word.She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it.I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side.""And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."

This is a heartbreaking poem......I believe God had chosen Annika to be our baby because he knew that we would love her no matter what. If given a choice of having Annika just the way she is, or not having Annika....well is there really a choice to be made? The only thing different about me in this poem is that I am a believer, and always will be. Both Dave's and my faith has grown stronger....Thank you Lord for Annika. Thank you Lord for Parker, and Thank you Lord for the support you provide. Amen.