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.

Cystic Fibrosis Commercials

So yesterday we were driving and P.J. asked me if I had seen the commercial for the bike ride from Vancouver to Banff in support of Cystic Fibrosis. After telling him that, no, I hadn't seen it he continued to tell me about it, getting mad as he described it and told me that I shouldn't watch it. This then sparked a conversation about advertising that is done for Cystic Fibrosis and how they tend to say things that make Cystic Fibrosis look and sound so doom and gloom. Yes, I know that Cystic Fibrosis is a fatal disease, yes I know sympathy = money but when I see this type of advertising, it feels somewhat misleading I guess from what we have been told from our CF team here in Alberta. He (and now myself as well) feel like either we're being fed the wrong information or the advertising spins the facts in a way that will generate more sympathy and in turn, funds raised. Here is the link to the commercial for the bike ride:
Link for "gearup4cf"


In this commercial it emphasizes that HALF of all Cystic Fibrosis patients die before the age of 25! Pardon my French but WTF! As I have said time and time again, yes, I'm a bit naive about things when it comes to CF but I've never heard this before! Is this true and no one is flat out telling me?!? For P.J. to get so heated about it I could tell that he was really upset. I told him that as parents of children with CF we have the right to voice our opinions to the CF community, including our local chapter, as well as CF Canada in Toronto. I told him he should write a letter and he said he planned on it. For P.J. to write a letter to voice his concern about this, it's a big deal.


And yes, don't get me wrong, I know this is a "fatal genetic disease" but I just don't think that the advertising needs to solely focus on the negative...that's my point.  And if the above statement of half of CF patients dying before the age of 25 is true then why am I being fed the line of, "The average life expectancy is into the 40's, but with advances it's more like 50's-60's"?


We had a parent's night at the Children's Hospital two months ago and this exact topic came up. The current commercials with the little boy looking like he's drowning...yeah, not my favourite. Yes, I realize that if you maybe showed all the healthy, happy looking people with Cystic Fibrosis that not as much funds would be raised but could be not put the spin on it that hey, because of the funds raised this is why they are doing so well?! Wouldn't showing a child or adult in need of a double lung transplant be just as effective for getting the point across of how serious of a disease this is? The drowning commercial just seems distasteful in a way, maybe I'm crazy. Yes, you could talk about the build up on the lungs and how it is hard to breath but showing a little boy drowning and leaving that as the last thought in your mind about CF is a tough pill to swallow for me. As one mom said that night, her two-year-old son knows the words Cystic Fibrosis and that he has it. What if he watches this commercial and believes that he is going to die drowning?


I respect other people's opinions but would be curious to see how a different type of advertising campaign would affect the actual funds brought in. I've looked at the where the funds go in the annual report and very much support how they are being spent but just feel like it sucks that I don't know who has the creative mind behind the actual advertising campaigns. You just need to think about how it would be for a parent to learn that their child has this disease and all they can think about it that commercial where the child was "drowning on the inside". 

Here is a link I found in a Canadian Medical Journal so obviously I am not the only one who feels this way:
Canadian Medical Journal: Raising money for cystic fibrosis: At what price?

We ended the conversation with P.J. making the point about how we have started to do our part by raising funds and awareness about Cystic Fibrosis but is this money going towards this type of advertising? I would love to hear people's responses to this, especially other parents of children with Cystic Fibrosis. You you don't want to respond by leaving a comment feel free to email me directly. Now I'm going to have a glass of wine. *And I can without guilt as I'm no longer nursing:)

That hump we're been trying to get over, well, we skipped it altogether!

So for a very, very long time we've been hovering around the 14 pound mark with Nash and just hoping something would change to allow for him to gain weight. Yes, I became obsessed and yes, it was hard to think about the fact that I should stop nursing and switch to formula. Well, from two weeks ago my plan of weaning him over a period of 6 weeks went completely out the window. Basically the first day I stopped one feed I got a pain and worried that it might be something more than just being sore. I called the Breastfeeding Clinic and booked an appointment for few days later.

I started to feel better before I had the appointment but still went and when she checked she said everything seemed to be ok but if I was to develop a fever than it could be Mastitis, a breast infection that would require antibiotics.  That was Friday and by Monday I felt like I had been hit by a truck.  After calling Health Link I was advised to go to Urgent Care which luckily for me is very close to my house. Once there sure enough I was diagnosed with Mastitis and put on Tylenol 3's, as well as antibiotics and booked for an ultrasound for the next day to check to see if there was an abscess which if present would require surgical draining. Awesome...well, Nash was so good for me over the days that followed, but the ultrasound report was unclear so I spent more quality time at Urgent Care. It happens to be in the same building as where you can weigh the babies but since that scale and the one at Children's Hospital are different I resisted the urge to weigh him. That was the first thing P.J. asked when he came home that night was if I had weighed him and I proudly said no!

No surgery was required but with being on medications I decided to "pump and dump" my milk and Nash went straight to being a formula-fed baby. I was a bit disappointed but honestly, it was like a huge weight was lifted off my shoulder. I now know exactly what his intake is and hoped to see weight gain at our appointment this past Wednesday. Well, that 15 pound hump, we jumped over it! Well, pretty much. He went from weeks of no weight gain only to go from 14 pounds, 10 ounces to 15 pounds, 13 ounces! I was so relieved! I can't believe how much he eats! He honestly has a bottomless pit and I hope when we go back in two weeks to see a continued improvement! I feel like I can let go a bit of this obsession as I see that he is healthy and I know that he's not that far off the mark when it comes to his weight. I was just stressed as it had been so long since I had seen much of a difference and he had previously been gaining so well.

In regards to no longer nursing, I have to say I feel like a whole new person. The combination of losing weight, being sick and stopping nursing all at once will do that quick, and just that stress gone! I don't feel as tied down, I can easily feed him in public, I'm not as worried about what I'm eating, the list goes on and on. Yes, I know all the benefits of breastfeeding and I'm glad that I stuck with if for almost 7 months but I'm pretty happy that things worked out the way they did and my 6 week plan went out the window!