Travelling with CF

To go or not to go...

When Nash was first diagnosed with Cystic Fibrosis, P.J. and I said that we would never travel outside of North America with him. We thought that the risks were too great and we wanted to protect him as much as possible from any infection, illness or disease. Well, back in the spring, my mother-in-law approached us with, "Would you ever consider taking Nash to Cuba?" She's been to Cuba several times and thought it would be fun to go for Christmas. My first instinct was to say no, but I did tell her I would think about it and look into it further. 

We spoke with other families that have a child with cystic fibrosis who have travelled, as well as the doctors and nurses at our CF clinic. The common theme from speaking with everyone was that while he's young, healthy and on minimal amounts of medications (none that require refrigeration, none that require a compressor) and that we should go for it! Our doctors even alluded to the fact that Cuba actually does have a great health care system and that Nash has been so healthy and then asked what it was that we were so worried about?  I guess the answer to that would be, the unknown. What would we be exposing him to that could be harmful? We would be staying at a 5 star resort, didn't plan on leaving the resort and would bring antibiotics with us, as we always do when travelling, just to have on hand. Overall, we decided that we would go and not let CF run our lives because of the fear of "What if?".

When we told people we were going, several gave us looks of, "Really, with Nash?!" but we decided that we wanted to go and that we would take all the precautions that we needed to. The ironic part of it all is that during the same time that I was making arrangements to go to the travel clinic, I went to daycare to get Nash one evening and get pulled aside and told that Nash has been exposed to Hepatitis A! Are you kidding me?!?! After all the stress I've been putting on myself about taking Nash to Cuba, he comes in contact with Hep A at daycare! Our daycare handled the situation immediately, and while I knew the evening before because they wanted to give me the heads up, the nurse from the Infectious Control Centre called me the next day to discuss the situation. In the end, even though he would for sure get the Hep A vaccination, they opted to also give him an immune globulin just be on the safe side. So, Nash's vaccinations for Cuba...done.

So when I go to the CF clinic for our next visit, our main nurse just couldn't believe the situation. After all the stress of whether or not to go on this trip, we get this Hep A thrown into our lap. When it comes down to it, with the amount of illness and disease going around our city, and the fact that a common cold for Nash could turn from bad to worse and hospitalize him, we can't always live in fear and keep him in a protective bubble.

So, the planning for the trip went into full action. 

Planning

Anyone that knows me knows that I'm a planner, I don't do things on a whim. I've been planning this trip for months and thought I had thought of everything! We had a travel letter from the hospital, had a friend translate it into Spanish (thanks Stacey and Cris!), antibiotics, brand new refills of all his meds and applesauce by the case in order to give him his enzymes. I had more antibacterial wipes than I ever could have used to wipe down that entire plane and everything and anything he could touch. I even went to the extent of bringing a small dish soap, a tea towel and dishcloth in order to be able to wash out all his cups and syringes in the room with bottled water. Basically, I had everything and ample of it...or so I thought. 

The Trip

Our first flight was to TO, a red-eye. Nash had therefore had supper and all of his medications while at home. We arrive into Toronto and find out that Yvonne's flight out of St. John's has been cancelled. Not delayed...cancelled. This sends us into a tailspin as we then discover that there are no available flights for her until the 27th of December, just two days before we were supposed to leave to come home. While we're trying to figure all of that out and looking outside and wondering if our flight is even going to get out, I decide we should give Nash his breakfast. I go to open up what I thought was a brand new, full bottle of enzymes and almost cry as I open the bottle with ease...no seal to crack. Before I even look inside I know we don't have enough enzymes for the trip. Enzymes are not just a required medication for Nash, they are the most important medication. His pancreas does not work properly and therefore his body cannot break down and absorb food. He takes enzymes every time he eats. The only except is if he has only fruit. In a day he takes up to 16 enzyme pills, so over the course of 8 days we would need roughly 128. I sit down on the floor at our gate, dump the enzymes out and start counting, we have approximately 60. As panic sets in it's getting closer to our departure time and I have no time to contact anyone in the Toronto area to get us any. I'm at a loss as to what to do and part of me wants to just say screw it and go back home. Basically we had just enough time to call Yvonne and then board our plane. She has doctor friends and pharmacist friends so my hope was that somehow, someway, she might be able to track some down in Newfoundland and bring them with her. I give her all the information and board our plane.

When you travel with a young child there's a lot of crap to bring. P.J. went on ahead to get the car seat set up on the plane and then I brought Nash down in the stroller with all our carry on luggage, including the medication bag which was hooked onto the handle of the stroller. I unhooked the bag from the stroller and set it down while I get Nash out and collapsed the stroller. We get settled and during take-off I lean down to get the medication bag to get something for Nash, and I can't find it. At this point I'm sure I've left it at the door of the plane and start crying. This trip is a total fail before we've even arrived. The flight attendant is trying to calm me down and help me look because we can't get out of our seats and in the end, it had been pushed way up under the seat and blocked by another bag. I'm just so upset about the whole enzyme situation that I can't keep my composure but being en-route to Cuba, there was nothing I could do about it until we arrived.

Cuba, here we come!

Once at our resort we immediately start with the phone calls. We get ahold of Yvonne and learn that she can't get them in Newfoundland. The Westjet flight attendant first thought that maybe we could get them to Westjet in Calgary and they could help us get them down with a flight attendant coming down but we later learned that legally that wasn't going to be an option. We called Christina, my best friend who happens to work for Westjet, and she makes some calls. Long story short, our options come down to: she gets the enzymes from our house and flies down with them but with no seats available until the 27th, that leaves slim to no chance of her getting a standby flight. We have my cousin Derek looking into FedEx or UPS, no go as they don't ship to Cuba. Westjet offers to fly me home and then Chris can put me on as a companion and I can try to get a flight back down...again, would be slim to no chance of me getting a flight back down to Cuba. Westjet offers the suggestion of having our doctor faxing a prescription and trying to get them down here. What they don't realize is that this just isn't a regular old prescription. You can't even go into a pharmacy in Calgary and get them...we can only get them from Children's hospital. So first two days of our trip have been consumed with how is Yvonne going to get to Cuba and what are we going to do about the enzymes?

Ah, this is the life! 

Yvonne managed to make it to the resort two days late by catching an Air Canada flight out of TO into Havana and then taking a cab to Varadaro and with the enzymes, it came down to the only solution we had...cut his doses per meal in half and feed him fruit for snacks. Of course at home he eats like a bird lately and the first few days there, he ate like a pig. I cringed every time he stuffed food in his mouth thinking about how the enzymes we had given him weren't enough.

Stuffing his face! 

I guess when it comes down to it, we didn't really know how it would affect him. We didn't know if it would just go right through him or if he would have stomach pain but for most of the week, it didn't seem to come into play. Then the last two days, he basically wouldn't eat. He refused all meds, screamed and cried and refused to let us do any physio. With his limited vocabulary he exercised the right to yell, "NO!" as much as possible.


Don't get me wrong, there were several highlights of the trip which included: The weather was perfect, the resort nice and small. We all got to spend time with Yvonne, who lives across the country. Nash loved the pool, playing with his sand toys at the beach and taking long walks along the beach while holding our hands. He played on the paddle boats and catamarans that were beached and just enjoyed being with us. For a boy that's not normally very "attached" he squealed in delight every time he saw one of us even if we had only been gone for a few minutes, he ran to give us hugs and held our hands the whole time. We spent uninterrupted time as a family, which rarely happens these days. Nash slept like a rock and even slept in most days until after 10am! With him sleeping so well I got to catch up on some sleep and read two novels throughout the trip. The biggest highlight was watching Nash go up on stage and laugh and dance. He had us in tears we were laughing so hard.

 

 

Last day, soaking it all in

So when people ask, "How was your trip?" I can respond with, "It was good!" but it didn't come without much added stress. Needless to say, I learned my lesson that even when I think I'm as prepared as I possibly can be, people make mistakes. When travelling in the future it's pretty safe to say I'll have more than enough enzymes! How I screwed that up, I have no idea. 

Summer Fun

As summer now draws to an end, it allows me to reflect back on what we did. For the first time in a long time it seemed like my summer vacation wasn't jam-packed, and it's the first summer in a long time that I didn't do any traveling. We pretty much stayed close to home and enjoyed all the fun things  to do in and around the city. We went to the splash park with friends, the Calgary Corn Maze, Calaway Park, several trips to Heritage Park, weekend visits from Nash's Aunt Barb and and a great two-week visit from Nash's Nana W. who came from Newfoundland.

Now that I'm back to work, people ask, "What did you do this summer?" and while I can say that I had a great summer spending time with my son, what I don't mention is all the "CF-related stuff" that ate up lots of our time. Aside from his daily CF "stuff", 4 days were eaten up by having a Bronchoscopy, an Endoscopy, an ultrasound and a full clinic day. While it may that 4 days isn't very much, it's 4 days too many for a child who should be outside enjoying all the funs things of summer.

For Nash's mere almost two years of life, his life has been ruled by many medications, daily physiotherapy, throat cultures, blood work, ultrasounds and chest x-rays. This summer was the time for the next form of preventive treatment in the way of a Bronchoscopy and Endoscopy which took place at the end of July.

While some clinics do not do these procedure unless problems start to arise, our CF clinic believes in scheduling these procedures before problems become apparent, in order to prevent as much permanent damage as possible. They are primarily looking for bacterial infections that might not show up on a throat culture. While these were not invasive procedures, he did have to be put under and that provided us with some stress not knowing how he would react to having anesthetic, the recovery process (including being hooked up to an IV) and of course, what they might find.

The Bronchoscopy procedure was fairly simple and consisted of a camera being placed down his throat in order to look at his airways and lungs. The actual amount of time the camera was taking pictures was 15 minutes and once done, the Dr. came out and gave us the great news that not only did things look good, they looked great! She actually handed me a color printout of all the images for his "baby book" as she described and I almost laughed. Not something many babies will have in their baby book! This great news was a huge amount of relief especially for me, as I primarily do all the physio and I worry that what I'm doing isn't enough. It's hard as a parent to not stress about what you can't "see". To hear that all was clear, makes me think that all that we are doing is working. This isn't to say that we could to the same amount and he could have an infection, but the fact that there was little to no mucus buildup visible was music to my ears.

Next was the Endoscopy, another 15 minute procedure. Again, there were no signs of problems prior to the procedure but our Gastroenterologist felt that since he was already being put under for the Bronchoscopy, it would be a good time for her to go in and get a good look at his liver, stomach, esophagus, and duodenum (a part of the small intestine). She would also take 8 small biopsies that would be sent off in order to be analyzed. From what she could see, she was also very happy with the results but was on vacation when we went to our clinic visit in Aug. so might get more details of the results at a later time.

The recovery was by far the worst part of the whole experience. When he was walking up, he was still "out of it" and screaming and flailing and trying to rip the IV out of his foot. This was followed by his blood pressure skyrocketing and his oxygen plummeting sending alarms and buzzers off giving me a mild heart attack. It was a long few hours of recovery but finally he was calmed down and medically cleared to go so we happily went home. Our time at the hospital in total for the day was 7 hours so all-and-all, not too bad. At least they were just day surgeries. I asked when he will have to have these procedures done again and was told around the time he is 3 and a half. Until then, I'm hoping he continues to be as healthy as he has been and we can avoid having him put under or needing IV's for at least another year and a half!

Walking the hall waiting to go in for his Bronch/Endo

Before they took him in for his Bronch/Endo

Keep Your Distance

When I talk with some people about Cystic Fibrosis and daycare, it always comes up about how it be great if CF kids could attend the same daycare to ensure that medications are given properly and the caregivers could learn more about CF etc. Well, the one thing that many people don't realize about Cystic Fibrosis is that CF patients shouldn't be around other CF patients. There's too high of a risk of infections being passed from one to another. While Nash is too young to want to play with these other CF kids, it does have an impact on us as parents.

When your child is diagnosed you immediately want to learn more about the disease. While you can go on the internet, so much of what you read is not accurate and so much of it is negative, it really means a lot to be able to talk with other parents who have been through it all. While our experiences many not always be the same, we all have the one thing in common, our child has CF.

I have met, and become friends with, some pretty amazing CF parents. It's just so hard that while we have so much in common, we can't hang out unless it's without the kids. While us moms do try to get together for breakfast, coffee or lunch every once-in-awhile, it has to be without the kidlets. It would be great if we didn't have to worry about our kids being around each other, and if the kids could grow up knowing each other and be able to share their experiences.

The standard rule of thumb is that CF patients should maintain a 3-foot range between them if at an outdoor venue and this is how we are able to do the Great Strides Walk. Everyone tends to stick with their team of friends and family and while Nash is young, he's in his stroller and not running around where he could be hanging out with other CF kids without even knowing. There are approximately 150 children who attend the CF clinic at Alberta Children's Hospital, many of whom attend the walk. It would be impossible to know who all of them are so we just try to do our best to keep him in his bubble and protect him as best as we can. Yet another one of those little things about CF that you may not have been aware of!

Great Strides Walk 2013

The Great Outdoors...or is it?

For me growing up, it was all about being outdoors and being active. Even as a young girl, while I had my Barbie dolls, I also had a sandbox full of dump trucks, climbed trees, played baseball and loved to ride my bike through the mud. When you think about having a boy, you can often think of the fun definition: Boy: A Noise With Dirt On It. While for a mother of a child with Cystic Fibrosis, dirt has a whole new meaning. Dirt means risks. Dirt is part of that "Big Bad Wolf " that I described way back when Nash was 4 months old and we first talked about taking him swimming---Pseudomonas.

Pseudomonas is a bacteria that I have become paranoid about. If/when a CF patient cultures positive for Pseudomonas they are immediately put on TOBI, an inhaled antibiotic to treat the infection. Pseudomonas is the leading cause of lung infection in CF patients and consequent permanent damage to the lungs. These infections are also one of the biggest contributing factors in the possible need of a double-lung transplant later on in life.

Pseudomonas bacteria can be found almost everywhere including: swimming pool, hot tubs, water slides, sinks, ponds, any standing water, plants, leaves, soil, dirt, animals etc. When we first debated taking Nash swimming last year we talked to clinic about our concerns of taking him to a public swimming pool. The doctor looked at the sink in the room and said, "There is more risk of there being Pseudomonas in that sink than there is in a public swimming pool." That's his opinion and while others may not feel the same way, we choose to take Nash swimming and try not to think about that "Big Bad Wolf". The doctor did however advise us against hot tubs and when talking about summer and camping he told us that while the smoke from a campfire may affect him, it also could for any "healthy" person. He did say that as Nash gets older that we should avoid having him play in piles of leaves, raking leaves etc. as it would stir up the Pseudomonas and could cause infection in his lungs.

Enter present day. A couple of weeks ago I took Nash to get photos done for the "Beads of Courage" program. When we arrived at the location and walked to where we were to have the photos done, I almost became paralyzed with fear. There in front of me was a big pile of leaves and a blanket set up and some toys. While the photographer and the Executive Director for Bead of Courage would have no idea of any of this Pseudomonas nonsense, I found myself at a crossroad. Do I just ignore it and go on with the photos as planned or do I explain my concerns about the location? I told myself that we can't have him live in a bubble, and while beyond stressed about the whole situation, I tried to block it out.

The whole way home I thought about how much CF has a hold of us. Something so simple as getting photos done where he is walking through leaves, has me all stressed out. I start thinking that I'm being a "neglectful parent" and how I would feel if he cultured Pseudomonas and I was the one that put him in that situation. I still don't know if I made the right decision and I also know that this is just the tip of the iceberge. He's not even 2 years old and I'm already thinking about all the instances throughout his childhood that I'll be faced with the same dilemma. Do I let him do this or not? And what about when he starts school and I don't have as much control over what he does throughout the day?! Oh man.

So for those who have children who can run freely through the leaves, roll around in them, go in a pool or hot tub without thinking twice, think about how something so simple can be so potentially harmful for someone who has Cystic Fibrosis. This is just a glimpse of how CF affects our lives.

Heavy Heart

Today I have a heavy heart. Today was my due date. I knew it was coming and some knew, others did not. I woke up today and literally felt sick to my stomach. People ask if we want more children and yes, of course I "want" more but the long and short of it is that we will not and it's because of Cystic Fibrosis.

There came a time a couple of months ago where the inevitable happened. Everyone around me became pregnant with their second. I knew it would be tough but when it happened, although I was excited for my friends, it was like a jab to the heart each time. It seemed as thought they all got pregnant at the same time (which they did!) and I started having dreams that people close to us were pregnant. I would wake up and write them asking if they had something to tell us!

I got over it and I know that we have made the right decision for our family. I know that we are very lucky to have had a child at all, others struggle every day to get pregnant, but I guess for me I just always imagined having more then one child so the fact that we "can" have more but won't because of Cystic Fibrosis is the hard part.

People always ask if we plan on having more children and my response is this, if we were to have another child, the chances of that child having CF are the same as they were for Nash. A 25% chance. But the reality is, it's not just about the chances of that child having CF or not. It's about Nash. We want to give our 100% to Nash. It's our family decision. I think about if I were to be having another child, as I was supposed to around now, and I don't know how we would have done it. I know that it's all about scheduling and asking for help but we don't have any family in the city. My husband owns his own business that is ridiculously busy, we have two dogs and a child that requires daily physiotherapy and meds, being diligent about his diet, doctors appointments, clinic visits....I know that we could manage it if we had to but I just don't want to feel like I'm taking any time away from Nash. I want to give him 100%.

So that's that. Today will suck but tomorrow I'll be fine. We have an amazing little boy and I can look forward to all the things we can do for him and with him. And to all my friends who are pregnant right now, you know that I'm beyond happy for you, I'm just a little jealous:)

Nash's Beads of Courage

I posted briefly about Nash's Beads of Courage back in the Fall when he first received them but with thinking about all that he's been through this past year I thought I would touch on it again. The Beads of Courage program was introduced to the Alberta Children's Hospital in 2012 with CF Clinic being the first to take part. Beads of Courage is a way for children to record and tell their story through beads. Each time we go to clinic Nash receives new beads. Here is a link to "Beads of Courage Canada" to learn more about the program.

Link to "Beads of Courage Canada"

This past week I was interviewed by a writer hired by CF Canada who is doing a fundraising letter featuring our family. This letter will be mailed out across Canada with the hope of raising awareness and funds for Cystic Fibrosis Canada. After being interviewed it really brought me back to when he was first diagnosed right up until now and all that he's been through. Clinic visits, throat cultures, stool analysis, ultrasounds, chest x-rays, blood-work, needles, needles and more needles. Add that to the numerous daily medications and hours of physiotherapy that will only increase as he gets older. Did I mention he's not even 2! This is what the Beads of Courage program aims at highlighting; all that he's been through, and will continue to go through, as the years go on. Each bead represents one part of his journey with Cystic Fibrosis. 

We feel fortunate that Nash has been fairly healthy with only numerous colds and rounds and rounds of antibiotics. He has not been admitted and his only "procedure" coming up is a preventative one in the way of a Bronchoscopy. His Bronchoscopy will take place this summer, and while only a 15-minute procedure, will he will need to be put out. 

We went over the whole process this week with our Respirologist and she was able to show me a bronchoscopy camera that they had hooked up to a computer and went through step-by-step the entire procedure. When asked whether I was ok with doing it I replied by saying that if they felt that the benefits outweighed the risks and they felt it necessary then we were ok with doing it. She explained that some clinics do them more often, some not at all unless there is a problem and that as a CF clinic, they are middle of the road with their approach. In our eyes, we would rather know if there is some form of bacteria in his lungs causing damage than not, so we will be going through with it. 

Nash's Beads of Courage - April 2013

Wrapping for a Cure

I have joined the committee for the "Wrapping for a Cure" event held each year in Calgary and we are already looking ahead to next Christmas! I know that everyone has their causes for fundraising and which charities they chose to support but for the rest of my days, I'll be fundraising for CF. I think it would be different if it was something that I was dealing with as an adult, but when it's your child that has a "terminal illness" (as it is deemed), things are different and you want to do everything you can to help find a cure. In one year I have already seen the advances in treatments for CF and feel that money raised truly is going toward a good cause. We will once again be doing the "Great Strides Walk" here in Calgary and we'll be fundraising for that, but "Wrapping for a Cure" is more about having friends sign up to wrap, taking their gifts to be wrapped, or helping us find corporate sponsorship for the event.

This past December I signed up for some shifts for the event, "Wrapping for a Cure". Being that we were going away for Christmas, and that I was only available to do it on weekends, I was only able to do 2 shifts, one at Market Mall and one at North Hill Centre. I had heard of this event in the past but obviously now with having a child with Cystic Fibrosis it takes on a whole new meaning. When I put it out there to friends to see who would like to wrap with me I was overwhelmed by the offers. Thanks to Meagan and Amanda who found child care for the day to come wrap gifts with me! I hope that by spreading awareness of this event that more friends in the Calgary area will sign up next year to wrap gifts at either of the two locations. Don't worry, I'll let you know when the sign-ups begin!

Our "Poster Child"

About the event:

"Wrapping for a Cure” is an event run by Cystic Fibrosis Canada, Calgary and Southern Alberta Chapter. Our committee consists of mothers of children with cystic fibrosis who are committed to raising funds towards a cure. It started over 24 years ago when a grandmother of a child with cystic fibrosis came up with an idea to raise money for CF. She set up a wrapping booth at the downtown Eaton's centre and called it "The Looney Wrap". Over the years, hundreds of volunteers have wrapped gifts at different Calgary locations, including our current locations of Market Mall and North Hill Centre, in exchange for a donation to Cystic Fibrosis Canada.

The event runs from December 1st until Dec 24th at Market Mall and North Hill Centre. Volunteers wrap customer’s gifts in exchange for a donation of their choice with all proceeds going toward research and clinic support in our area. In 2012 our event raised $40,000, and we are hoping to beat that this coming December. While Market Mall and North Hill Centre have been instrumental in our continued growth and success, we would like to add additional sources of revenue by extending sponsorship opportunities to corporations and individuals in order to help us achieve, or beat our goal!

If you know of a corporation that may want to support "Wrapping for a Cure" please let me know! We are looking for companies that will sponsor a "shift" and match the proceeds raised on that shift (or day) and proper signage will be displayed recognizing their company.

Just as one thing gets easier

Just as one thing gets easier, another thing gets harder. Always the way right?! Well with us, the physio has gotten a bit easier. While it's still hard to fit it all in, Nash doesn't fight us on it as much. When we flip him on his side he still blocks us lots with his arms and hands but he's not screaming and wiggling away.

The hard part now is eating, or lack thereof! We had been so spoiled in regards to what a great eater he was. He would eat everything we gave him, and by the handfuls. We would joke about how we could never imagine him becoming a vegetarian as he loved meat so much. He would eat fish, all different meats and every kind of fruit and vegetable out there. Well, now...not so much! It started when we flew to Newfoundland for Christmas. We assumed that it was due to all the changes. The long hours of travelling, the time difference, being in a new environment and he also had a bit of a cold. We had hoped that things would go back to normal once we returned home. Well, it's been another week and a half and it's no better. He'll eat all fruit, his yogurt and take bottles but very little else. 

With Cystic Fibrosis weight gain and maintaining it is a big deal. CF patients have a diet that only others could dream of. Add salted butter to everything, load it up with high calorie/high fat ingredients and eat like a pig! Haha, that's how P.J. and I describe it. There still needs to be balance obviously but my child will eat much differently than one that does not have CF. You'll see me loading on the salt, adding lots of butter, sour cream, and our new favourite Hollandaise Sauce (has 1/2 cup of butter in it!) 

How Does CF Affect Nutrition? (Taken from a CF website called "CF Chef")

Link to "CF Chef" Website

Most people who have CF also have a condition known as exocrine pancreatic insufficiency (EPI), which means that the important digestive enzymes in the pancreas cannot reach the intestines to aid in the digestion of important nutrients such as fat, carbohydrates and protein. If these nutrients are not digested, all of the vitamins and minerals that are in them will not be absorbed into the body. In order for people who have EPI due to CF to digest and absorb the nutrients in food, they need to take supplemental pancreatic enzymes.

To get enough calories to promote normal weight gain and growth, individuals with CF may need to consume up to two times as many calories as a person without the disease. Also, to be sure that the correct amounts of vitamins are available, a multivitamin designed for people who have CF is usually prescribed.

Even though people who have CF need extra calories, this does not mean people with CF can eat foods like french fries covered in cheese as their only food at every meal! They need to balance food intake at meals and snacks to stay on track with weight gain, growth and overall healthy nutrition.

So, taking all of that into consideration this phase of not eating is it bit more stressful to me than someone who has a child without CF. We have worked so hard on offering a variety of foods and hoping that he wouldn't be a picky eater and at one point this brought us to seeing him go from less than the 10th percentile in weight to the 90th! The last clinic visit in December he was in the 70th and I just worry that we'll see another drop when we go in February. I notice a difference in his belly size and the way clothes are fitting but P.J. just thinks it's due to an increase in his height and the laps he does running around our house with his walker. 

Regardless, spending an hour to an hour-and-a-half preparing a meal only to have Nash throw it on the floor the second it hits his tray and then proceed to cry is enough for me to want to walk away and cry myself. I try not to show any emotion but then I'm stuck standing then thinking, now what? I am really hoping that this is a phase and that it passes quickly! 

Last month when he used to love eating! 

A day in the life...

So back when Nash was 4 months old I did a post about what a typical day living with CF was like so I thought I would do an update. Surprisingly, not a whole lot has changed in regards to his medications and his overall health. We are forever thankful for our CF team for always being on top of things and feel that we have been lucky thus far with his health. He has had cold after cold but we know that this would be the case for most children entering daycare for the first time.

Medications
In regards to medications, Nash takes 3 enzymes per meal, 1-2 for snacks. These enzymes are pancreatic enzymes and do what our pancreas does, which his cannot. He needs to take these every time he has something to eat or drink except for things like fruit, or fruit juice, because there is no fat to break down. He also takes Ranitidine twice a day. In the beginning he took it for reflux, but now he continues to take it in order to help the enzymes do their job. He takes Urso (Ursodiol) for his liver, which has only been since about the end of August. This is common for many CF patients and works as a preventative measure for his liver. He takes this twice a day. AquaDeks is the bright orange multivitamin/mineral supplement and his takes this once a day. We add extra table salt to all of Nash's food. I've gotten a few strange looks in public with this one! CF patients sweat out way more salt than us. That's why they do what's called a "Sweat Test" when confirming CF. It measures the amount of salt.

To the left of the picture are things that are not taken daily. The bottles are an antibiotic that Nash takes when he has a bad cough that won't go away. Since July he has been on this three times. When Nash gets a cold it's not like a typical child getting a cold, it holds on for a long time. He usually gets a bad cough and then I begin to panic. We wait 5-7 days of the cold taking its course and then we call/email clinic and get their advice. We are most worried about a viral infection becoming bacterial. Bacterial infections can cause long-term damage his lungs and depending on how much damage is done over the years, often leads to needing a lung, or double lung, transplant. Our clinic tends to be on the more aggressive side of treatment in order to prevent these bacterial infections from getting into the lungs.

The ventolin inhaler is used periodically when he is sick. Often times children with CF will also have asthma but so far, so good.

Physio
I've written a lot about physio in the past, and our struggles with it, but basically what we do is called "Manual Postural Drainage". By moving Nash into different positions we are able to "beat" on his lungs, haha.  We use a cupped hand position and try to do approximately an hour each day. This is now tough being that we both are working full-time. We have to wake Nash up early in order to get some done in the morning as he's too overtired and cranky to handle an hour in the evening. P.J. does about 15 mins in the morning and then when I get home from work I try to do another 45 minutes. To squeeze this in after work, supper, bath and bed by 7:30-8:00 is a challenge and there are many days where I envy those who can come home from work and have play time and enjoy their evenings. I feel like a lot of my time with him is beating on him and giving him medications:(

Over the holidays a family member did make a great point though, that's an hour of physical contact he is getting with us and that can be pretty special bonding time. When he is calm, I definitely feel that way. When he fights it, I'm pinning him down and he's screaming, I don't feel like we are bonding as much, haha. We just keep hoping that as he gets older and we can explain it to him, that hopefully it won't be so hard.

So that's a quick update.

Nash Day - "Giving back to the CF community"

So if read my blog back when Nash was first diagnosed you may have read the post I did about the backpack we received from another Calgary CF family. Nash was diagnosed when he was fifteen days old and shortly after, we received a backpack while attending clinic that was put together by this generous family. This family has a daughter who was also diagnosed through newborn screening and as a way of giving back to the Cystic Fibrosis community they made 10 backpacks filled with things that they found useful in the first year of her life. The thought and care that was put into these backpacks quickly overwhelmed us.

When we started to think about Nash's first birthday approaching we thought that we should see about carrying on with the backpacks as the clinic has just handed out the last one. We decided to also put together 10 packs: 3 girls, 3 boys and 4 neutral and took November 15th, one year from his diagnosis, off work as "Nash Day" to deliver these backpacks to Children's Hospital. 

We started the process of making a list of all the things that we wanted to include in our backpacks. I wrote a letter explaining what we are doing and started sending it to companies in the hopes of receiving some donations. I made sure to include a picture of Nash, usually with the item we were requesting, in order for their to be a more personal connections. The response I had was overwhelming and for two months, every day was like Christmas coming home to a parcel on my front porch. 

In the end I couldn't have been happier with our backpacks. Here are the backpacks and the items that we were able to put together with the donations from companies and our very generous friends and co-workers. 

When it came time to deliver the backpacks I was a bit sad for the project to be over. When I woke up that day I was a bit emotional thinking about that day one year ago. I held it together for most of the day until I got to the hospital and our CF nurses and social worker all came out into the waiting area of clinic to see us. Seeing them walk toward us, all the memories of that day came flooding back. I remember every single detail of that day like it was yesterday. When we gave clinic the backpacks we were told that on average 9 children in Calgary are diagnosed with Cystic Fibrosis each year. Our clinic sees approximately 140-150 families of children with CF from Calgary and the surrounding area.  To our knowledge, 3 of our backpacks are already designated to families who have received the diagnosis since October. We hope that our small contribution to families receiving the diagnosis will make them feel like they are not alone.

Some of you may have heard about the Aviva Community Fund Project. Well, there is a mom in Ottawa who has started something similar to our backpacks in her area. Her project is called "Kaiden's Care Kits". With the support of her local Kinsmen/Kinettes group she has been putting these kits together in the Ottawa area but is now hoping to expand it to across Canada. Her goal is for each family across Canada receiving the diagnosis to receive one of these kits The contest is in it's final stages (only a couple of days left) and you can help make this a reality by voting for Kaiden's Kits by following this link: http://www.avivacommunityfund.org/ideas/2011/acf11376

If Kaiden's Kits do become a reality in Canada we are still hoping to do something in order to make that personal connection with families in Calgary receiving the diagnosis. We will continue to celebrate "Nash Day" each year on November 15th and hope that we can make a difference in some small way. 

Happy 1st Birthday Nash!

So hard to find time to post these days! Just thought I would try to do a quick update...

I took Nash to clinic last week and with what started as a long, wintery drive in city traffic, 2 hours and 20 minutes later I arrived at clinic with the boy still in his pajamas and breakfast to be had. He was happy for about the first 30 minutes and then it became more and more challenging to keep him happy and entertained for the three hour clinic visit and the chest x-rays that followed.

Overall medically speaking, all is well. I did have some concerns with the fact that he has had cold after cold for 2 months straight and after speaking with our doctor decided once again to put him on another round of antibiotics, his third round since July. We also had a throat culture done just to put my mind at ease in regards to the risk of his cough being from a bacterial infection. Luckily for us he likes this antibiotic so it's not that big of a deal to add it into the mix. His weight continues to be great, the physiotherapist seemed to be happy with what we manage to do in a day and we are now eligible for the Child Disability Tax Credit.

In order to qualify for this the doctor at clinic needs to sign off on all the paperwork and what it boils down to is the amount of hours spent on daily treatment/physio per week. It likely won't amount to much each month that we will receive but will hopefully help us out a little bit come income tax time. We are lucky with a disease such as CF that many things are covered, enzymes, antibiotics, vitamins, etc. but the little things all add up such as gas, parking and prescriptions that are not covered. What this also means is that we can switch his RESP to a "Registered Disability Savings Plan". This can be used for anything after the age of 18 including University and all associated costs with that if he chooses to attend, medications, equipment for treatments, or anything else that he may need assistance with. Not all people are aware of this savings plan as not all banks do it but it's a great resource for those of us with a child with CF.  Here is the government link if you are a family in Canada looking into this: Registered Disability Savings Plan

We finished off the day with routine chest x-rays, the first that he's had. He was so tired from missing him morning nap, and cranky to boot but I figured why drive all the way back there another day to do something that could only take a few minutes. They were very fast in getting the x-rays done but it's sure hard to watch your child be so upset! The put him in a seat, lift his arms above his head, pull the plastic pieces around his chest with tubes for his arms and then strap him in. Sounds fun for a one-year-old right?! Man, I couldn't wait for this day to be over! I left and once in the car he was out cold in seconds. I had thought about getting our flu shots done that day as well but after what he had been through thought that could wait until another day!

So, after a busy week of clinic and celebrating his first birthday it's hard to believe that this time last year I woke up to get ready for work on Halloween only to have our beautiful baby boy born just a few hours later! Happy 1st Birthday Nash!! XOXO

Life Expectancy

So this past week some parents who attend CF Clinic the Alberta Children's Hospital were able to get together for a parent night. These nights are held once every two months and gives us a chance to talk to others who are going through the same thing as us. The one thing that is tough about it is trying to get both parents there. I've gone twice but like many of the other moms there, it's the dads that are staying home with the babies so we can go out and chat. This meetings are technically called a "Parent Support" night but it's not like we sit around crying about CF. We get to share experiences and learn new things from each other.

Most that were there this month were like us, fairly new to the world of CF. The clinic arranged for an adult patient with CF to be able to talk to us about what it was like to grow up with CF and give us that other perspective. He is 27, married, has gone to university and maintains a full-time job.

Listening to him talk was great and if I could take anything away from what he had to say was to let Nash be a kid. Yes, we have to be extra careful about certain things, but not to let CF run our lives. Listening to him speak made me think a lot about what Nash's future holds. Will he go to University? Will he get married? Have children?

We went to a wedding at the beginning of September and while the groom was dancing with his mother, another friend turned to me, giggled and said, "Some day that will be you and Nash." I've never said anything to anyone but that hit me in a weird way that night. All I could think was that I truly hope to see that day. P.J. and I have both said that our main goal for Nash is that he will outlive us. As recent ago as the 1960's the life expectancy rate in CF patients was 4 years old. With the research that has been done we were told when Nash was diagnosed that we can hope that he will live into his 40's. Possibly even his 50's or 60's. I recently just watched this video, it's 10 minutes long but it gives a good overview of CF and the advances that have been made. Every Breath Counts 2012 Video

The thing that many people don't realize is that Cystic Fibrosis is a progressive disease. Yes, he has been fairly healthy this past year and yes, lots of times CF patients don't "look" sick. People don't see what goes on behind closed doors on a day-to-day basis to maintain Nash's health or really know what we can expect for him as time goes on. It's not that we are trying to pretend that he doesn't have this fatal disease but we choose to think about the "right now" and not the "what if" of down the road.

I try to make sure that every day of Nash's life is full of love and happiness and I want every day to be cherished. I hope and pray for him to stay healthy and live a long life.

Beads of Courage

So this past clinic visit was the first one that I was not able to attend. It was a bit tough to be at work all morning and wonder how things were going. Luckily for me my work day goes by so fast that before I knew it, it was lunch and P.J. had finished up at the hospital. A quick three hour clinic, that might be a record! I was able to get an update from P.J. on my lunch break and hear the answers to all the questions I had sent with him to ask. I was a bit worried about Nash's belly size...seriously, it's huge! They agreed that it is large but not hard so all is well. I guess he's just chubby, weighing in at almost 24lbs! (80th percentile for weight!!!) I was also curious to hear about the ultrasound results and if his liver enzymes were still showing as being a bit high and if so, what that meant.

The ultrasound did show what they expected, that Nash would need to start on a new medication for his liver. I was a bit stressed to hear about the new medication but was told that it was pretty standard for CF patients to be taking it. The new medication is called Ursodial or "Urso" and from the information sheet that P.J. brought home my understanding is that in CF patients there is a malfunctioning protein that causes salt and water imbalance. This can cause bile to become think, the flow of bile becomes slower and a blockage can occur which can then cause damage to the liver. The Urso acts like a cleanser and he will have regular ultrasounds and blood work to continue monitoring his liver.

Our problem this week is that every time we try to give him the Urso he projectile vomits. I called Clinic to see if this could be some type of reaction but apparently it's just that gross that he's making himself sick. Awesome. So, it's been a stressful week with the physio battle every night and trying to get him to take this new medication. He's also learned how to spit so when we try to give him the Aquadeks that he's on (which stains bright orange) he spits it out. This is the stuff he use to suck back as a newborn. Guess he's now figured out that it's disgusting.

One thing that was new at this clinic visit is that Nash has received his necklace for "Beads of Courage". This program runs in many Children's Hospitals across Canada and the US but is new to the Alberta Children's. Each time a patient has a procedure, admittance, clinic visit etc. they receive a new bead in representation.

How do single moms do it?!?!

Nash is sick...again. It started off with just a runny nose a few weeks ago, which he picked up from being at daycare. Our dayhome lady had sent me a text to let me that one boy had a runny nose and then asked how I would like to proceed. I asked if he also had a cough and with the answer of, "no", decided to send him and just asked her to keep me posted on if it developed into anything more than a runny nose. It's so tough to know what to do but can I really keep him home every time someone has a runny nose?!?

Well, it didn't take long for Nash to also have a runny nose and then one evening he developed a low-grade fever. Because of this he wasn't able to go to daycare the following day. With P.J. getting ready to go away for work and being crazy busy with work and with me having my first "official" week of work (before students), I couldn't just not go. I stood there holding Nash, looking at P.J., with no clue what we were going to do! Our school board was starting that morning off with a welcome back breakfast and after arriving late, still had to figure out what we were going to do with Nash for the day. Our plan all along was that with P.J. owning his own business that he would just stay home but we quickly realized that our plan would not always work. Be have no backup plan. We have no family in Calgary and any friends that we do have that don't work, have young children at home so we can't expose them.

I have one friend who was on holidays from work but at home so I asked her if there was any way that she could come watch him for a couple of hours in the afternoon.  I told her I would hate to get her sick and I wouldn't be upset if she said no. She said she could come for the afternoon and I went to the staff breakfast, stressed to the max, while P.J. stayed home for the morning. Once at the breakfast someone who knew I was pregnant came up to me and asked how I was feeling, could I eat any of this stuff or were smells making me sick, etc. Well I then had to tell him that I had a miscarriage and literally stood there and said, "Awkward!" as I put some food on a plate and fought back tears (I was only able to fight it for a few minutes when a walk through the hotel was required). Man, what a day!

Well then the cough started and as usual, I called CF clinic in a panic and they called in a prescription for antibiotics that P.J. could pick up (he had to take Nash up to Children's anyway to have a routine ultrasound) so that we could have them on-hand in case I felt like we should start them over the long weekend. While I had our nurse on the phone I asked her what her thoughts were about the daycare vs nanny situation. Her advice to me is that yes, this year he will likely be sick 10 times and 3-5 of those times he will be required to go on antibiotics. Well, that made me stop in my tracks. When I think about how long it takes for him to get over being sick and the thought of him being sick 10 times...well, that doesn't leave much time for him to be healthy. But again, she made reference to the point that if it's not now, than it'll be when he starts preschool or kindergarten.

So with Nash being sick for almost a week and no sign of getting much better P.J. left to go away for work for a week. It also just happened to be the same week that school started for students. I started Nash on the antibiotics that night and the next day brought him to daycare worried that I wouldn't actually be able to leave him there with his cough.  Being that he no longer had a fever, and had been sick for a week it wasn't likely that he was contagious, he stayed for the day and had some good naps. The week went on and I really felt for any single moms out there! How do they do this?! I've been getting up at 5:30am, doing drop-off at daycare, work all day, do pick-up at daycare, home at 6:00pm, supper for Nash, an hour of physio (which takes an hour and a half), give Nash a bath and get him to bed, laundry, dishes...holy crap, I'm going to burn out FAST! I basically wanted to cry every day I was so tired and called P.J. and told him that this whole "being a single parent thing" sucked!

I still stress about whether being back to work full-time and him being a in dayhome is what's best for him but at this point it is what it is. I love my job but I sure do miss being home with him every day and hope that his health does not deteriorate because of him being around children that are getting sick/are sick/getting over being sick, germs and bugs that I bring home from school and me not being able to do as much physio as I could do while home with him all day. One thing we do need to figure out is a backup plan for when he is sick and not able to go to daycare. I called my parents and asked them to move back to Alberta, specifically Calgary, but sadly they said no. So...if anyone knows of a retired nurse, who lives in Calgary, that would like some extra cash, that would be ideal! Send them my way!

Back to plan "A"

So I struggled with whether or not to share this but figure there's others who have been through something similar and can relate and others who may go through this in the future...

I've been asked by a lot of our friends and family if we plan on having more children. This is a tough one. I always imagined my life with having two children. P.J. has always said he only wanted one. No biggie, we figured we'd just see what happened once we got to that point in our life.

Then we had Nash and once he was diagnosed with Cystic Fibrosis the topic of more children was brought up once again. I remember the Dr. at Children's Hospital advising us that we should really think about things before we go into another pregnancy blind. Our chances for having another child with CF would be the same, 25%. If we were to have two children with Cystic Fibrosis it would mean a high risk of them passing infections back and forth, double the clinic time, double the time spent on daily treatments etc. Our only option to ensure that we do not have another child with CF is to go through genetic testing and IVF. When we talked about it we decided that for us, having Nash was enough and that we didn't want to go through IVF or adoption. We've been blessed with an amazing little boy and we want to be able to spend all of our time and energy on him. I was a bit sad to think that we wouldn't have any more children but knew that for us, it was the right decision.

Well, then we recently found out we were pregnant. We were definitely thrown for a loop! Since meeting other CF parents I have learned that there is a test, a CVS, that can be done to determine whether or not the baby would have CF. This test would have to be done around 11-13 weeks into pregnancy and for us it would be a way to mentally prepare for what was to come. Our CF clinic arranged for us to go the Fetal Medicine Clinic to learn more and discuss whether we wanted to go this route and do the testing.  P.J. and I would have to have bloodwork done prior in order to determine which types of CF mutations we carry so that know what they are looking for. Our appointment was scheduled for today so that if we did want to proceed, we could have the bloodwork done in time to have the CVS test done.

On Sunday, I knew something was wrong. By Monday morning we went to Urgent Care and suspected that I had suffered a miscarriage. After three days of bloodwork and an ultrasound our suspicions were confirmed as I received the call last night. So here we are within a short period of time from going to finding out and being in panic mode, "Two kids in cribs and diapers!", to wrapping our head around it, "Ok, so it'll be great to have two kids so close in age", to being excited about what's to come, and then to being sad. While I know that it would not have been ideal timing, and we only knew for a short time that we were even pregnant, it still sucks.

So where does that leave things now, back to plan "A" I guess. Nash is our boy, he's perfect and we are happy and I have a new job to keep me busy! But if I seem a bit "off" over the next little while you'll know why. It's been a bit of an emotional roller-coaster these last few weeks.

Off to work I go!

So this past week Nash started at his dayhome part time as a transition week. I start work tomorrow and knew that dropping him off for the first time and then heading off to work directly after would NOT be an option as I would be a mess. Dropping him off wasn't so bad. He loves people and didn't seem too concerned with being left some place new. The tough part for me was that I wasn't able to get into the school so I just dropped him off and then headed back home to clean the house. Well, I only made it about 9 minutes after dropping him off before I started to lose it. Thank goodness I didn't have to be in public that day. I'm not really nervous about him being there, it's just a sad time to think that I've spent every single day of his life thus far with him and now that time is over. Once I got home it was such a strange feeling to be there and not have him home with me! When I picked him up and asked how he napped she told me that he napped for over two and half hours. (Out of the four hours that he was there!) I guess being in a new environment didn't bother him!

One of our last days before daycare, the Zoo with Mommy and Nana W. 

As the week went on there were no more tears shed and after I dropped him off each day I was busy in my classroom getting everything organized. The time flew by and it was great to get text messages and pictures from his dayhome provider to keep me in the loop as to how he was doing. Everyone says that it'll get easier with time, and I can see how that would, be but I'm still sad knowing that I won't have that time with him each day.

It's one thing to send your child off to daycare when they are healthy and it's another thing when they have CF. My biggest concerns about him being at a dayhome are: germs and him getting sick more often and him getting his medications. I'm also stressed with how I'm going to manage after working all day to pick him up, drive home, get him fed, bathed and an hour of physio all in a three hour window. And how are my weekends not going to be consumed with grocery shopping, making meals for the week and cleaning and still have quality time with him? How on earth do people manage all this?!?!

Follow-up on chest therapy/Man cold

So I thought I would write a follow-up on my last post in regards to chest therapy. We went to clinic a couple of weeks ago and I once again had an in-depth conversation with our physiotherapist about the whole chest therapy situation and him fighting it. It's the sides and his chest (while he is laying on his back) that are the hardest positions at this point. Our physiotherapist once again reassured me that at this age, not many families can get through an entire therapy session with a happy, compliant, child. She told us not to push it as we don't want for him to hate physio time and that we should start, and continue to, make it as enjoyable as possible which we have been trying to do. For us right now, it's a time where he gets to watch his Baby Einstein and Gigglebellies DVD's. He will sit for 30 minutes straight and watch while I do the easier three of the five positions and sometimes he will even snuggle into me or lay his head on my arm.

Nash snuggling during physio

Try holding a nine-month-old in this position for 5 minutes! 

It's hard because Nash was just sick for the first time and when it's time for physio to be the most important, we were lucky to get what we did done, which was a very limited amount (if any some days) in those two difficult positions. Did I feel guilty? Of course. Did I feel like it was my fault that he was sick? No...but it's still hard to think that maybe what I'm doing isn't enough. At a time where I am just about to go back to work (that's another story) it's stressful to not get everything done that I should, and want to, in regards to his treatment. How am I possibly going to work full-time and still manage an hour of treatment each day let alone more and more time that is required as he gets older!?

As for Nash being sick, it started off as just a slight cough.  Me being me, I stressed about it and called clinic. After describing his cough but lack of other symptoms, I was told that he should start his first round of antibiotics (Cefprozil) for 14 days. Well, the next day he woke up with a full on "Man Cold" and was miserable. Did I mention he was also teething! His cough was so bad, he was wheezy, snot-nosed and sneezing galore. It just so happened that was had an appointment at the pediatrician's office that day and he felt that Nash should be put on a Ventolin inhaler. So, after antibiotics, the Ventolin and lots of hugs and cuddles from Mommy, Daddy and Nana W. he was over everything in just over a week! We managed to get through it all relatively easy and I'm actually glad that his first time being sick was before I went back to work.

Ok, so I'm a mean mom to take his photo but how sad is this face!?!

So now he's all better and we went to get bloodwork yesterday as they said his last bloodwork showed a "slight increase" in liver enzymes and wanting to double check. I love how they try to word it so that you don't instantly start Googling and stressing! (Which I proudly have not!) Deal with it if/when we need to is how I look at it. While I was there I did a quick weight check of course! He's just shy of 22 pounds!! Again, forever grateful to live in a province where there is newborn screening, it was caught early and that we are so well taken care of! I really hope that the other provinces and states can realize how well these babies and young people are doing with the early detection and start implementing newborn screening across the board.

Daily Chest Therapy

Chest Therapy

I've had a lot of friends ask me about the chest therapy so I'll try to explain it as best as I can. Basically at this point the daily chest therapy that we do is a preventative measure. We do postural drainage known as "cupping" or "percussion" where you use a cupped hand to tap over the lungs in five different positions. Cystic Fibrosis  patients have mucus that builds up in the lungs and their bodies do not have the natural ability to break this mucus up. By doing postural drainage of the lungs using percussion we are preventing this mucus from building up. Many ask about as he gets older what will this therapy look like and I don't really know at this point. I was told that we will do this until he is about five and at that point they will show us what we can do to teach independence when it comes to therapy and who knows what will change in the next five years with CF. 


There are several "tools" on the market, especially in the States, that are used for therapy but at our clinic they see hand percussion to be the best form of therapy at this point. They have always told me that if I am curious about something that I have seen or heard about to let them know and they will do the research and present their findings to me. The vest is one form of therapy that many people strive to be able to add to their routine but at a cost of $12,000+ and none of that covered through insurance or government sponsored programs, I would really have to do my homework to see if it was something we would be interested in down the road. I know that there are some companies that sell refurbished ones at a more affordable rate but again, not something we need to think about right now.


So, what does chest therapy look like now?  I always do it on the floor and start with him in a sitting position. I have him sit in between my legs and he watches Baby Einstein on the laptop (judge away) while I go over the shoulders and do five minutes on each side of the upper lungs.  Then I turn sideways and sit him on my lap so he is facing forward and do his back to get the upper lungs in an upright position. I do 10 minutes in that position as I can get both sides with one hand while he is this small. Next I lay him over my lap, and do his back while he is in this position, for another 10 minutes. So 30 minutes done without too much of a fight. Lots of times when he is laying down over my lap he tries to front somersault off my knees but if I can get him when he's full, but not too full, slightly sleepy but not the figgity sleepy stage, and overall happy then it's no problem! Haha. Then there's the other two positions...I have to flip him onto his back and do his chest while he is laying down. When he was an infant it was easy as he use to fall asleep on the nursing pillow in that position and I could do it while he slept. Now as soon as I flip him onto his back he screams and wiggles. I've tried getting P.J. to try to entertain him and hold his arms down while I do it but I'm definitely not able to get 10 minutes done, 1-2 minutes if I'm lucky. The sides are the same. He screams, flails his arms, wiggles away and I don't know what to do. 

Lately he rests his head on my arm while I do therapy in this position

When we met with the physiotherapist when he was around 6 months I told her of our struggles with these positions, mostly the sides, and she suggested a few things and nothing works. I tried having him sitting on me and just leaning him to the side so he's not totally flipped onto his side but still doesn't work. She told me that she doesn't know many parents with children at this age that could get a full session done and not to stress. There are days where I tell myself that he was diagnosed so early and this is all preventative so not to get all bent out of shape about it but then I think about how I am the one responsible for his therapy and I feel guilty day after day of not doing it "properly". 

Then there are days like when we flew to New Brunswick and being a 13 hour travel day physio took a back seat. I did a little bit on the plane but felt like people were looking at me and wondering why I was "beating" on my kid. So, if I'm at your house and you see me hitting Nash a minute here, two minutes there it's because sometimes it's tough to fit it all in.

I hope that when he's is a bit older I can get him to understand that he needs to have this done and can let me do it without a fight. Every day this is my struggle and I'm about to go back to work. I had really thought about hiring a nanny and teaching the nanny how to do chest therapy but for now, we're going with a licensed dayhome for Aug./Sept./Oct. and then he is suppose to follow his dayhome provider to her new daycare facility. That will give us a few months to see if not having a nanny will work for us.

My boy is HUGE!

So I just realized that it's been just over three weeks since I last posted! Time sure flies by! I'm in New Brunswick right now visiting family and it seems like I've blinked and our visit is almost over.

As for Nash, we went to Clinic on the 13th of June and I was blown away by his continued weight gain. In my head I was hoping for him to be at lease 17 pounds and when he was weighed he was 17 pounds, 7 ounces! He has jumped from the 10th percentile to the 25th for his weight and in the days since I think he has only continued to pack on the pounds. I can honestly say that my "obsession" with his weight is no longer an issue (at this time) as everyone who sees him can't believe how "thick" he is. I will continue to be curious of his weight but I'm no longer worried about it. We were at the mall the other day and I decided just to carry him from the foodcourt to one store and my arms were tired!

My huge boy at almost 8 months old

With added weight gain also means his super cute 6-month Carter's summer clothes no longer fit. I bought him these outfits back when we got a hot spell and he's now busting out of everything I got him. He should now be starting to fit into all the clothes that his Nana W. has been sending him from Newfoundland.

Nash hasn't had to be put on any more medications but we have had to increase his enzymes. We have been changing an awful lot of diapers lately so at our last clinic appointment they told us we just needed to tweek something a bit so to increase his enzymes to one and a half per feed and see what happens. After a week we still didn't notice a difference so we were told we could go up to two per feed. When I was packing for our trip it kind of hit me how many pills he takes. In a container there are 100 pills so when it comes down to it, he goes through 100 pills in ten days. That's a lot for an 8-month-old baby and it breaks my heart to think about all the different medications he'll have to take as he gets older.

The following day I was leaving for NB so with a 13+ hr travel day it was nice to not have to change so many diapers! I thought things were going to be better in that regard but since I've been in NB not so much, I'm talking 6-7 poopy diaper changes in one day! I'm not sure what the difference could be so I called and they have made note of it and we'll see what happens in the next week or so.

He has been so happy and has adjusted well to the time change and sleeping in a playpen. He's got the napping thing all figured out and I hope that his routines haven't been thrown off too much. Once we fly back we are only in Calgary for three days and then we're off to Edmonton for 6 days so hope he does as well there as he has here!

Maybe it's just me...

So in response to my last post about the advertising that is done for Cystic Fibrosis, I guess I'm alone in thinking that it could be done another way. I never underestimated the power of advertising for such an important cause or wanted to downplay the severity of Cystic Fibrosis.  I'm not against raising funds for Cystic Fibrosis Canada to use for advertising, I just personally don't like the ads. I guess to put things in perspective, I don't even watch the news as I find to too depressing so maybe I just like to block things out.

The consensus from the few parents of children with CF that I heard back from in regards to my post is that it those ads help the ones we love, they're all for it. My personal opinion, is that those who donate, do so because they have some connection to CF. Whether it be sixth-degree-of-separation or a close connection. Very few individuals or companies just start researching charities to donate to so I still feel that these ads could be done in a different way and continue to generate awareness and funds.

Cystic Fibrosis is one of those diseases where most of what is going on is on the inside and therefore people don't realize that yes, it is a fatal disease. They don't "see" the hours spent on chest therapy, the medications etc. that it takes to keep them alive. I however, chose to live life day to day and not think about the what if's. Maybe that's because we're so new to this and he's been healthy but when I saw the ad for the bike ride and it stated that half of those who died with Cystic Fibrosis were under the age of 25 it felt to me like they were telling me that my child has a 50/50 chance of surviving to the age of 25. So yeah, I was mad. The statistic that they are referring to I have learned is correct, but I guess the reason why I haven't heard this before is that with detecting CF on the newborn screen and starting medications and treatments so early, hopefully, this statistic will change dramatically over the coming years.

I respect other people's opinions and hope that no one ever feels like they are going to offend me by sharing their thoughts and opinions with me. The only time I will take offence is if someone tries to tell me that my "opinion" is wrong and that their's is right or try to shove their opinion down my throat. As I said, we are only seven months into this journey and I'm sure my opinions about certain things will change over time but I hope that I never get so scared that all I focus on is the what if's and that I continue to cherish every single day that I get to spend with my amazing little boy.