And counting...

I lost track of where we are in the 28 days of treatment. Imagine that. I do know though for a fact that we have past the half way marker. I had to remix antibiotics. For some reason when you have 2 kids with CF pharmacists trust you immensely with pre-measured water and dry antibiotic powder. So by now we should be very close to 20 days! We are finally use to the long treatments and Trinity is able to sit by herself during her TOBI nebulizer! Here's what a typical day is looking like around here:

7:00 am-the troops arise (that would be the boys of course)
7:05-breakfast
7:10-still telling Cayden to eat breakfast
7:20-STILL reminding Cayden he needs to finish breakfast so he can get to school on time.
7:25-Cayden's morning round of meds.
7:35ish or so-Cayden dressed
7:45-Out the door
Between 8:30 and 9:00-Trinity wakes up (a true princess!)
9:05-breakfast for Trinity
9:10ish-Trinity's morning round of meds.
9:15-dress Colin and Trinity (this is Chris' gig M, W, F)
9:30-pulmozyme nebulizer for Trinity
9:50-therapy for Trinity
10:10-TOBI nebulizer for Trinity
10:50-FINALLY done with Trinity's morning nebs.
11:15-start lunch
11:45-clean up lunch
12:00- naps :)
3:00- Trinity up from nap, boys never end up taking nap unless Cayden has school and then he's really tired. M,W, F I come home!
5:00-start dinner
6:00-eat dinner
6:15-clean up dinner (notice there's only a 15 minute window here for the adults to scarf down their food)
6:30-baths, clean up toys...
6:50-evening meds for both Trinity and Cayden
7:00-pulmozyme nebulizer for Cayden while simultaneously doing Trinity's therapy again
7:15-Cayden ready for his vest
7:20-Trinity ready for last round of TOBI for the day
7:45-Cayden finishes his treatment
7:55-Trinity finishes her treatment
8:00-brush teeth, say our prayers, read a quick story. Sleep with the angels.

And tomorrow, we start all over again. And yes, somewhere in the day we try to fit in time for Colin.

A week ago yesterday Colin turned the big 3! He had a great "Colin-o-dile" birthday party complete with a crocodile cake. He weighs 36 lbs and measures 36 inches tall! 90th percentile for weight. Ugh, he must live in a house with children who malabsorb everything they eat!

Friday we are seeing Trinity's CF doctor even though we originally didn't plan on seeing him again until the end of February. About a week ago Trinity's wheezing started back up and they put her on albuterol which seems to be controlling those symptoms better.

Enjoy the pictures below. I'm finally getting around to posting them!

20 some days...

Trinity's Current Medicines (minus TOBI & albuterol)


Cayden's Current Medicines


Trinity's First Nebulizer Treatment-ever!
Confession: I didn't upload the ones of her screaming!


And another...

Nothing is Mandatory

This weekend was possibly one of the most relaxing and renewing retreats I have been on for myself in a very long time.

Flew into Pittsburgh on Friday afternoon. Got picked up from the airport, checked into the hotel, ate dinner.

The retreat started Friday night at 6:30 with adoration of the Blessed Sacrament and confession. Aw b-e-a-utiful! Second best to Jesus' presence and the sacraments was the "nothing is mandatory, feel free to opt out of anything" intro to the weekend. Lovely. Just lovely.

After adoration/confession I went with friends to see Leap Year. Great chick flick! And I will never ever again complain about inflated movie ticket prices. Never. Admission to the theatre in Steubenville was $9 and a quarter. After Cold Stone Ice cream to bed I went.

Saturday morning brought sleeping in to 9 (which meant I completely skipped morning session) and making it to the first workshop "Marriage and Ministry." Very helpful. The speaker talked about the need for woman to be loved and the primary need of man to be respected. When a woman doesn't feel love she reacts without respect, without respect men react without love. And so begins a vicious cycle. That workshop ended with me making two new friends and following them around the rest of the afternoon. Post lunchtime brought 2 more workshops, shopping in the bookstore for souveniours for the fam, and time for quiet pray and reflection at the Port (normally Franciscan University's perpetual adoration chapel, however at the beginning of the semester they wait until all the spots are filled to begin exposition of the Blessed Sacrament round the clock). Saturday night included a FOP (Festival of Praise) which is full of praise and worship singing, scripture reflection, and prayer.
The night ended with a fun social full of desserts and punch and prayer ministry. A group of probably 20 or so of the 97 met to lay hands on each other and pray over them. It was powerful and overwhelming!

Sunday flew by with Mass and a quick lunch at the Olive Garden to end the fun journey. It was so great to see the expression on my little ones' faces when I came in the door late last night. I missed them. I learned so much but can't remember a darn thing to post here other than that I came back with a renewed spirit and so much more joy than when I left. And this quote from the workshop on Holiness:
"At the end of our life, we shall all be judged by love." -- St. John of the Cross
Nothing but love is mandatory.

Making it through...

I wanted to post a little blog update about the kids and the new treatments to let you know that we are just making it through. Cayden and Trinity's coughs are loosing momentum and we are all still very much adjusting to the horrendous scheduling conflicts that multiple nebulizers and 12 oral drugs have left us with. But we are, for the most part, getting by one day at a time. One day closer to magic number 28 when we will be free from some of these meds for at least 30 days (prayers for longer).

It has been a tiring 2 weeks, stressful, and filled with emotion (mostly from the excess in female hormones coming from me :)). But the kids are troopers just fighting with all their might and making their lungs stronger each day. We will get through this, we just have to keep reminder ourselves of that daily.

Tomorrow I leave for Steubenville, OH for a youth ministers retreat. Mixed emotions. On one hand I know how tireless and daunting taking care of the three kids is right now, and on the other hand I am in need of a retreat and reconnection with my faith. So, the other hand triumphs and off I go until Sunday. Prayers for Chris and my parents taking care of everything while I am away. I am so grateful for their support.

Thank you for the prayers. They're blessing us a hundred fold. Peace-Tiffany

Permission to Hope

I'm sure you are familiar with the saying "when it rains, it pours!" Indeed it does. On top of all the "CF" sickness we've been dealing with we're now dealing with the flu. I am the last one standing (knock on wood and yes, I know I'm doomed!). Chris and I are still entirely sure that Cayden actually had the "flu." This morning as I one whole block away from school, Cayden started throwing up in the car. Me driving, I felt completely helpless. We turned that car right around got him undressed and in the shower as he's singing at the top of his lungs "This little light of mine..." When we asked him what he was doing he simply and matter of factly replied, "singing my Christmas concert songs." We are kind of leaning towards the taking 8 meds in the morning might have been tough on his little tummy. Yes, 8! I promise to post pictures of them all. The pill line up on the counter was so ridiculously long that I just couldn't let a photo-op pass me by.

And with all of this going on I haven't even had a moment to really sit down and think about the new year and starting a clean slate.

The new year will also inevitably bring with it lots of "new things" for our family.
April-Chris's last sister will be married
**I am due 10 days later**

May-Arrival of baby 4

September-My sister Ashley's wedding
**I will have to fit into a bridal dress 4 months shortly after delivering baby4**

My personal new year's resolutions:
*Go on more dates (with my hubby of course)
*"Waste" more time with my kids
*Stayed "toned" during pregnancy by working out 3-4 times a week
*Pick up the Catechism of the Catholic Church, find where I left off and continue trudging through
*Do something for myself other than indulge on Starbucks coffee (I'm checking this one off January 15th-17th flying to Steubenville OH for a youth ministers retreat with just myself, a good friend, and one very large suitcase for two).
*Blog at least once a week
*Raise lots of money for CF and heck, maybe find a cure for CF!
*And if it is God's will for me and my family, have a HEALTHY baby!

So if you're wondering to your self, "Self, what are the odds of having another baby with CF?" The answer is 25% or 1 out of 4. This would seem like a very small odd. However considering we have already hit the 1 out of 4 twice Chris and I don't do "well" with small odds. The odds of two CF carriers marrying is also 1 out of 4. We should have bought a lottery ticket.

But really, all I need is permission to HOPE. And that is what my faith has given me. We are praying to St. Gianna Molla for a healthy and CF-free baby. Her story is amazing! Here is a short biography of her incredible decision that ultimately led to her sainthood:

In September 1961 towards the end of the second month of pregnancy, she was touched by suffering and the mystery of pain; she had developed a fibroma in her uterus. Before the required surgical operation, and conscious of the risk that her continued pregnancy brought, she pleaded with the surgeon to save the life of the child she was carrying, and entrusted herself to prayer and Providence. The life was saved, for which she thanked the Lord. She spent the seven months remaining until the birth of the child in incomparable strength of spirit and unrelenting dedication to her tasks as mother and doctor. She worried that the baby in her womb might be born in pain, and she asked God to prevent that.

A few days before the child was due, although trusting as always in Providence, she was ready to give her life in order to save that of her child: “If you must decided between me and the child, do not hesitate: choose the child - I insist on it. Save him”. On the morning of April 21, 1962, Gianna Emanuela was born. Despite all efforts and treatments to save both of them, on the morning of April 28, amid unspeakable pain and after repeated exclamations of “Jesus, I love you. Jesus, I love you", the mother died. She was 39 years old.



Prayer to St. Gianna
God our Father we praise You and we bless you because in Saint Gianna Beretta Molla you have given us one who witnessed to the Gospel as a young women, as a wife, as a mother, and as a doctor. We thank you because through the gift of her life we can learn to welcome and honor every human person.

You, Lord Jesus, were for Gianna a splendid example.
She learned to recognize you in the beauty of nature.
As she was questioning her choice of vocation she went
in search of you and the best way to serve you.
Through her married love she became a sign of
your love for the Church and for humanity.
Like you, the Good Samaritan, she cared for everyone
who was sick, small or weak. Following your example,
out of love she gave herself entirely,
generating new life.

Holy Spirit, Source of every perfection, give us wisdom, intelligence, and courage so that, following the example of Saint Gianna and through her intercession, we may know how to place ourselves at the service of each person we meet in our personal, family and professional lives, and thus grow in love and holiness.

Amen.

The Good, The Bad, The Ugly

Just when we thought things were improving...the culture results came back.
Both Cayden and Trinity are growing a type of influenza bacteria. Check. More serious: Trinity is growing pseudomonas (confession: I always have to google how to spell this one!). Now to really capture the essence of why this is so serious take a step back in time to say 30 years ago. Once a kid with CF caught pseudomonas they never got rid of it and usually it was their death sentence. Now today it is still very, very serious but there is something we CAN to about it: TOBI! TOBI is a shortened name for tobramycin (another word I google to spell correctly) an antibiotic nebulized drug which used to be only given intravenously (ie given via IV inpatient only). There's no nice way of saying it so I'll just be blunt with you all: TOBI sucks! Its given twice a day AFTER chest therapy and lasts twice as long as a typically nebulized drug. Therapy=20 minutes + TOBI=30 minutes x 2= nearly 2 hours of my life involved in one kids regimen for at least 30 days. If one round isn't enough we go back at it again for round two. Trinity will be prescribed an oral antibiotic, CIRPRO to fight off the pseudo as well.

Now, Cayden's dilemma. He grew MRSA which is an antibiotic-resistant bacteria which is not so much a concern to his health but those with weakened or compromised immune systems fighting cancer. The 5th graders at St. John's visit the PreK students once or twice a month to do "buddy projects." Connor, a 5th grader battling cancer, is one of the students that comes to Cayden's class. So more than likely Cayden will have to wear a mask when Connor visits so he doesn't spread MRSA. This is something I'll have to talk to the doctors about more on Monday. Cayden had MRSA in May of 2006 and successfully beat it 6 months later. For him to be off the record for having MRSA and going through all the health protocol for being at clinic he will need to have 3 negative cultures on 3 separate visits. Cayden is a fighter and I have no doubt in my mind that he will overcome this again! So onto the meds to help us to that. The doctor will be putting him on an antibiotic called bactrim (a familiar name in the Topel house) and another antibiotic which I don't remember the name but the side effects include turning his sweat, urine, and bowels orange. When I told Cayden about this he just about bust a gut laughing he thought it was soooo funny! I can't say his reaction surprised me at all.

This is the first time having 2 kids with CF that they have both, at the SAME time, been sick with such serious things. And it's def. not the first. But the hard part is keeping their germs to themselves. No more kisses on the lips. Just cheek kisses for now. It breaks my heart to tell Cayden he can't kiss Trinity. It's by no means the worst. The worst would be a hospital visit or facing a lung transplant. I look at all the families around me that have dealt or are dealing with cancer and I can't complain. The cross that I was given has a lot of hope in it. We are extremely lucky to be so near a cure. My heart goes out to those families because while I have NO idea what they are going through I have somewhat of an idea. We are so blessed to be in a community of friends and family who care and love us so very much. We are blessed by faithful people who we know will intercede for us. It is good to know we will get through this. Thank you for your support and prayers. If you are reading this, please know that we will be praying in thanksgiving for you.

Jesus, the master physician please heal Cayden and Trinity and hold them in the palm of your hands.