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.

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!

Great Strides Walk

Sunday was our first "Great Strides Walk" for Cystic Fibrosis. I had hoped to be able to wake up, have an easy morning and head there in plenty of time for the walk. Well in true fashion with having a baby, that did not happen, and it ended up being a stressful start to the day. I hate being late but it never fails, just as I'm about to leave, there needs to be a diaper change! And then looking at the weather it was a last minute scramble to get everything ready to be prepared for a typical Calgary day, rain, snow who knows!  We had been out late the night before so were dragging to begin with but man, it was just one of those mornings.

As the donations continued to come in that morning I was overcome with gratitude for all the support we've received. When we arrived at the walk, I once again was overcome with emotions as I saw our friends there bundled up in the cold to support us as we did the walk. The rain held off and we were able to enjoy our day but it does make you think more about the whole CF thing. Realizing that all those people there are either going through the same thing as you or know someone who is.

Thank you so much to everyone on our team who fund-raised, to those who donated and those that came and walked with us! It's been a long seven months and having the support for our friends and family has meant so much to us. In regards to funds raised, the final tally for our team "Ca$h for Nash" was $5,440!

Our team, "Ca$h for Nash"

I look forward to doing this walk annually and appreciate that the funds raised go towards helping our little boy, our family and all the families affected by Cystic Fibrosis across Canada.

The scale at Children's Hospital is broken. It has to be!

So this week was a full clinic visit. P.J. wasn't able to go with me so off I went, optimistic that all was well. We went Tuesday as there is one doctor on the CF team that only works Tuesdays so we've never met her as we always go on Wednesdays. We met with two different doctors and both emphasized how great he looks, but that damn scale!! I seriously think it's broken!!! We were there a couple of weeks ago and he was 14 pounds, 10 ounces and then at his six-month shots, on a different scale, he was 14 pounds, 15 ounces. I know that I shouldn't be comparing with different scales but it really does feel like a kick in the teeth when I go back to Children's Hospital and he's only 14 pounds, 10 ounces weeks later.

I know he didn't lose weight, but his gain is basically nothing. So after him eating solids, nursing as often as every two hours some days, thinking he's feeling heavier and then that...it sucks. So what now? Well, after breast feeding for six and a half months and that being what was considered "best" for him, it's no longer what is best. The doctor as me if I enjoyed nursing and my response, "no". I know some mothers love it and feel that connection with their child etc. but for me, it's been the toughest thing I've ever done and it really is draining. It's also stressful to not know how much he is eating and worrying that it's not enough. They also upped his enzyme dose and we'll see if all things combined help with his weight.

It's also hard to feel so attached/trapped, not sure what the best word is. I quit playing soccer partly because it's so hard to do anything without him. When he eats every 2-3 hrs and nursing you're always thinking, I have to quickly do this and get home before he needs to eat again.  You get the text saying, "He's eaten everything in the house and is screaming his head off, now what?" When I go out and others are just giving their child a bottle and I have to dig out my little cup of applesauce, give him his enzymes, find a spot to nurse, try to hold him up under a nursing cover, etc. etc., it's everything I dream to just be able to give him a bottle. And the day that I can pour him a cup of milk and hand it to him, wow, that'll be a great day! My instinct for the past two weeks has been to start to introduce formula and so I don't know why it came as such a shock to me that they would suggest it and the emotions that followed. In a way it feels like I "failed" but after coming home and having a day to get over it I'm feeling better about the situation. 

Our CF team social worker asked me if I was "obsessed" with his weight. I didn't really need to hesitate to respond that yes, I guess I am. A few friends have also asked why I'm so concerned with his weight. I'm not really sure of how to answer. I guess one reason is that I feel like yes, he's perfectly healthy now but if he were to get sick, he doesn't really have much to lose. I never really took into consideration that that's when would admit him and make sure that doesn't happen. It's also tough because he was gaining so much so quickly, and then not just slowed down but pretty much stopped, you think about what you are doing wrong as the one person responsible for feeding him. So now the weaning has begun. My plan is to drop one feed a week and have him weaned in six weeks time. That'll be good timing as we'll be off to New Brunswick and then once back will be going to Edmonton for a week to work. 

Thanks to my friends and family who have listened to me moan and groan about the whole "weight issue" for so long and hopefully we'll see a change in the coming weeks. And thanks to my friends (JT) who are always quick to point out babies around the same age who would also be considered small for their age. I know that he is healthy and happy and I'll try not to obsess so much about the stupid scale. 

The big move

It's been over a week since I've updated so here's the scoop, we moved Nash into his own room! In Alberta they recommend having babies in the same room as the parents until 6 months of age. We've had Nash in his crib in our room and I must say I've really enjoyed having him there. When he cries I can quickly tend to him and for the most part, he's been a great sleeper. My parents were here visiting two weeks ago and I said that after they left I would move him into his own room. Well they left and with hesitation, I asked P.J. to move the crib. He asked me more than once if I was ready and my response was, "No, but if I don't do it now it'll only get harder to do so". So, we moved his crib on Saturday and that first night I was a bit sad. I was the one with separation anxiety! But, he's been great in there and now we just have to work on getting him to bed a bit earlier in the evening. I just feel like it's so hard to fit everything in during the day. By the time I get him to bed, throw laundry in, wash bottles etc. it's time for bed for me as well so I really don't have any "down time".

6 Months Old!

Our days are busy with the library program, swimming lessons, walks at the park and trips to the Zoo. I just feel like when I go back to work I don't want to look back at what I did with him and regret not taking advantage of being off and enjoying doing things with friends and their children.

Nash and his buddies Mason and Cian at the Zoo

Heading out to Fish Creek Park for a walk

Speaking of work, I worked a half-day while my parents were here. I figured it would be as good time as any to test it out and get my feet wet again. It was a great afternoon but it sure was a lot of work to get everything ready to leave him for just a quick afternoon. I'll be working again next week, another half day, and hope to know what's going on for work next year in the coming weeks. This means, looking at child care for Nash. 

Child care has been a HUGE concern of mine. How can I possibly leave him with someone else?!?! But, as P.J. says, "Everyone in the world has to do it!" Well, no, they don't but yes, I do...I know that but just feel like he's so little who is going to give him the best care imaginable. So, I've been doing research on nannies, dayhomes, public child care facilities and it's all very overwhelming. It's also hard to look for child care when you don't really know what you are looking for. With not having a position to go back to I won't know if I'm looking for part-time, full-time, location etc. 

I'm leaning toward the Edleun Learning Centres so if anyone has any feedback on these centres please fill me in! I've heard good things and I hope to tour one of the facilities later this week or next. 

Well, still not over the hump!

What a crazy week it's been! We started off our week with a great trip to the Zoo! It was 27 degrees and we were there for just over 4 hours! Nash seemed to really like the fish in the aquarium the best. We also got to see the penguins, which are new to the zoo, and it was a great way to finish off our first day at the Zoo. We have an annual pass so hope to go about once a week.   

Jen and I with Cian and Nash at The Calgary Zoo

On Tuesday we went to see a new pediatrician. It was really just a chance for us to meet him and for him to get to know a little bit about us. They weighed him and according to their scale he weighed 14 pounds, 9 ounces. At Children's they want us to compare his weight from their scale so I basically ignored his weight and figured I would know how much he "really" weighed on Wednesday.

Wednesday my parents arrived from Ft. Mac on their way back across the country to New Brunswick. My Mom came with me to take Nash to get weighed and have his "6 month blood work" done. When it came time for them to actually take his blood, it was not fun. There were two techs getting ready to take his blood and it appeared as though one was learning. I know that everyone has to learn on someone's kid but really, did it have to be on mine? I also know that it can be tough to draw blood from babies, but man, I was not a happy camper. After several failed attempts from "newbie" I suggested maybe we could try another day since we would be coming back to do a full clinic visit in a few weeks. At this point the other tech took over, switched his arm, warmed it up with a heat pack, tried again and was successful. In the end, it was Baby Einstein that kept him fairly calm and he did much better than I anticipated. This blood work is to test all kinds of stuff including his vitamin levels etc. They called this morning with the results and said everything looks great.

How sad is this face!?! Nash once home from getting blood work done

As for weight, he was 14 pounds, 10 ounces so still not over what I consider to be that "hump". I also found out that P.J. lied about his weight last time to try to make me feel better about the whole situation. He was 14, 3 and he told me he was 14, 4. He should have at least lied by a bit more than 1 ounce! Anyway, after the dietician plotted his weight he is around the 10th percentile so again, could be better but he gained an average of 13 grams a day in the past two weeks compared to 8 in the previous weeks.

We started Nash on Rice Cereal last Sunday and then tried Avocado on Wednesday. He loves the rice cereal but when we tried Avocado he had a fit! He screamed and cried and gaged and tried to spit it all out. I tried again yesterday but it was a no go. I may have to try the suggestion from a friend of mixing it in with the rice cereal. Today we are going to try Kidney Beans and see how he does. I'm looking forward to him trying new things and optimistic that this it may also help with his weight gain.

Resisting the urge...

Today I resisted the urge to weigh Nash. I went to a "Feeding Your Baby" class and it was in the room just down the hall from where I usually weigh him. With the scales at Children's Hospital being the ones that we are basing everything off of I don't want to weigh him elsewhere and then be disappointed when I go to Children's and it be off. So, as hard as it was, I didn't weigh him today knowing that he will be weighed on Wednesday. I really hope we have gotten over that 14 pound hump!!

I must say that I've been really impressed with the support and free classes that Alberta Health provides to new parents. We did the 10 week "Birth and Babies" class (which was not free) and since then have done the "Mommy and Baby" class (6 weeks), as well as today's "Feeding Your Baby" class, for free. The class was good but I've done a lot of reading so didn't really learn anything mind blowing. I did pick up a few tips and I'm looking forward to trying new foods with him. I haven't tried anything except for the applesauce and pear for him to take his enzymes. I know most people start with Rice Cereal but our dietician briefly talked about it and suggested to maybe start with "Meats and Alternatives". Ugh, just the thought of making puréed meats is grossing me out. We have an appointment with a new pediatrician on Tuesday and then back to Clinic on Wednesday so maybe I'll hold off until after I see them to start. Or, maybe I'll start Rice Cereal tomorrow and then introduce Meat and Alternatives throughout the week one at a time...

This week we also started a library program called, "My First Parent/Child Mother Goose Experience".  Nash's best buddies Cian and Mason as also in the program and we had fun learning new songs and rhymes with the boys. I couldn't remember a single word once I left but it's all about repetition and then they'll give us hand-outs at the end of the program with the words. It also helps when Jen sends me voice memos of her singing the songs in her car as soon as we left so she wouldn't forget the words!

It's getting to be pretty busy with the Library program and doctors appoinments etc. so we're going to have a lazy weekend at home and then Monday Nash will be having his first Zoo trip! Well, technically he's been to the Zoo but it was for "Zoo Lights" on Boxing Day where he slept the whole time and the animals were all inside so it's doesn't really count. But yes, we'll say that was his first "time" to the Zoo and this will be his first "experience" at the Zoo. I'm wondering what he'll think of all the animals?

Could it be? Could we be over the 14 pound hump?

Could it be? Could we have finally gotten over that 14 pound hump?!? So it feels like Nash has weighed right around 14 pounds FOREVER! Well, I guess that's because he has. He was gaining an average of 1/2 pound per week until 3.5 months and then he hit a wall. At his clinic appointment last week it confirmed that in two months time, he had gained almost a pound. So, the plan was, and still is, feed more. He sleeps so well through the night that I don't want to start to have to wake him to feed, so in order to get in what we think will be enough it means feeding every two hours during the day. Between feeding and physio and the occasion nap it doesn't allow for much else! It also makes it hard for me to keep up with how much he needs so I had to supplement with formula both Thursday and Friday night. There's something about nursing, and then not having enough milk to feed him, that makes you feel guilty but I have to realize I won't be able to nurse him forever and there's nothing wrong with formula. Sure, breastmilk is what is best for him, but I can only do what I can do. Yesterday I tracked down a health food store near our house and was able to pick up some herbal supplements that should help with milk supply. They are huge and I feel like I'm eating plants all day long but if it helps, great. I'm more interested in trying the "Cookies" that a friend has suggested. These "Lactation Cookies" have ingredients like oats and brewer's yeast that are suppose to help but they also have chocolate chips. Mmm...chocolate. I hope they work!

So after this feeding frenzie we've been on I've done the old weight myself and then weigh myself holding him and today, there's a 15 pound difference!! Who knows how close to accurate it is but for the most part when I've done this I've been pretty close with my guesses. I'll be very anxious to see when we go back (in a week and a half) how much he'll weigh!

Nash playing with his toys in the Exersaucer

We did manage to sneak in a pool date on Friday and Nash had fun using his new pool floaty in the big pool. He was just chillin' reclined in his floaty, sucking his thumb, hanging out with his buddies Mason and Kieran and checking out all the ladies. He didn't however appreciate being splashed and made sure to give the girl who splashed him a dirty look. He also took a wave in the back of the head and didn't seem to be too bothered by it. He didn't get any water in his mouth and after the initial shock of it and me scooping him up quickly enough to make sure he didn't cry, he forgot all about it. Next time Michelle will realize what that "buzzer" is for (waves starting) and give me a heads up as I totally didn't hear it. We are looking forward to starting our Saturday morning swimming lessons early May and then hanging out in Nana and Granddad's pool in New Brunswick at the end of June.

I blew up Nash's pool floaty, went to grab something and came back to this:)

Latest clinic visit

Well yesterday was a long one! We started out our clinic day with a gentlemen giving us his weekly parking pass as his son was released sooner than expected. Yeah, score for us! This was a great day to receive this since I would later be going back for a parent night therefore paying for parking twice, which is not cheap at the hospital.

At the beginning of our visit, Nash checking out the playground from the window

Once our appointment started we were cruising through seeing everyone and we thought maybe we'd get out of there early! Then after about two hours we hit a wall, starting to have more wait time in between seeing people. Nash kept it together for a couple of hours but I must say, by the third hour it was getting to be a bit much and had to pull out the Baby Einstein on the IPhone. We got him calmed down and then I rocked him to sleep and he had his afternoon nap on the bed. It took everything for P.J. not to get on that hospital bed and have a nap himself. The only person we had left to see was the Respirologist on that day. Well I can appreciate the time that she was taking with another patient, and would hope they would take that time with my son if needed, we waited over another hour to see her for five minutes. At one point I left and walked the halls thinking they had forgotten about us. It was a ghost town and then finally found someone who checked and then assured us we weren't forgotten. So after it was all said and done it was a four hour clinic day. Next visit I'm packing magazines and a lunch!

Keeping him entertained while waiting

So, we didn't hear anything we weren't already expecting to at this visit. Nash is doing great for the most part...his lungs are clear, his motor development is great, he grew 2.5 cms and then there's his weight...let's just say they didn't pull out the growth chart and plot his height and weight this month. I'm sure they don't want me to stress but it's hard not to, in two months he's gained just under a pound putting him at 14 pounds, 4 ounces yesterday. So we're going to try feeding more frequently, continue adding the powdered formula into the breastmilk once a day and go back in two weeks. We won't have a full clinic appointment but will have him weighed and since he'll be almost 6 months, they will do his blood work and put his poo under a microscope.

After leaving clinic we had a quick visit and supper with friends that live in the North end so that I could go back to the hospital for the parent night. It was great to meet a few other parents and put forward questions and hear suggestions from parents who have been at this a while as well as clinic staff. One thing we did talk about was the wait time during clinic. I'm not sure how this can improve but maybe Home Concepts can install a few tv's!

Applesauce a success!

So I mentioned yesterday that I was going to try to give Nash his enzymes in a bit of applesauce and it was a success! Well, for the most part. He did spit up a bunch after I fed him so who knows how many he actually digested. It was quite funny to see his reaction to the applesauce and I tried to get a video of it. Keep in mind it's hard to feed him and take a video on my phone in the other hand at the same time but here it is!

I gave it to him again this morning and he seems to like it and he's quite interested in the spoon. It's making me more excited to be able to try new foods with him soon! If you've never had to give medications to your child at every single feeding it's hard to imagine how big of a step this is. Just something as simple thing as a tiny bit of applesauce on a spoon I know, but it makes things so much easier. It also symbolizes one step closer to him being able to take them in his food and not even know they're in there and then one day being able to take them himself.

Some days I just wake up and wish that for one day I could just play with him, feed him and just go about our day. If he had to feed, how easy it would be to just feed...how I wouldn't worry about how much physio I've gotten done throughout the day. Ten minutes here, 5 minutes there, did I do enough? I'm not trying to complain, I guess for me I'll never know anything different and neither will he, but still, some days these are the thoughts that go through my head and today is one of those days. It's tough being a new parent, and it's tough being a new parent who is essentially responsible for the overall health of such a precious person. Everything I do is for him whether I'm tired, frustrated, annoyed, upset, angry...none of it matters, I just want what's best for him and so that means medications, daily physio, doctors appointments and trying to maintain an overall positive attitude toward the whole thing.

5 months! Where does the time go?!?!

Five months already! Crazy! I can say that things are finally starting to get a bit easier. I think it's because he sleeps through the night and therefore we're both more rested throughout the day. We still need to work on daytime naps though. Yesterday he was so overtired, rubbing his eyes, and then fell asleep in his swing. I then tried to get him to nap in his crib. I tried the whole "Cry it Out" philosophy and it was a 40 minute battle that I eventually lost. Today he's had one nap in the crib for about 30 minutes and he's currently napping in the swing and I'm saying, screw it and letting him.

Happy 5 months Nash!

Nash is learning and doing new things all the time and I'm looking forward to starting solid foods with him in just a few weeks. I plan to make all/most (?) of his food and so have got my "Baby Bullet" ready to go! Just purchasing a food steamer and getting a few books for ideas. A friend told me that the books by Annabel Karmel are pretty good so I'm going to start there. What I'm most looking forward to is that I will then be able to put his enzymes into his food! Our dietician told us at the very beginning that we could give the enzymes with a little bit of apple sauce and we tried it and he didn't like it. (Keep in mind he was only three weeks old when we tried) I'm thinking that I may try again this week as you can only imagine that nursing him while he has all of these enzyme beads in his mouth is not fun for momma. Here's an older picture of him with a mouth full of enzymes sound asleep. Of course he was screaming because he was starving 5 minutes before this was taken. Gave him his enzymes and out like a light.

This weeks update

After speaking to one of our CF nurses earlier in the week I decided to take Nash over to South Calgary Health Centre to have him weighed. On Wednesdays they have a drop-in program where you can weigh the babies and ask the nurses any questions you may have. I know that from our last visit to CF clinic that his weight has really slowed down, an average of only 8 grams/day. While I try to look at the big picture and realize it would slow down eventually, it's still hard not to stress about it. Our nurse assured me that he is doing great but for my own peace of mind I went to weigh him. Not much change:( According to their scales he is just over 14 pounds. His weight and length are both between the 10th and 25th percentile. Again, could be worse, could be better. P.J. has informed me that I am no longer allowed to weigh him unless we are at CF clinic.

On his way to get weighed

So taking the advice of our dietician I decided to try adding powdered formula to breastmilk once a day to make his calorie intake higher. The recipe to make higher calorie breastmilk simply calls for 1 teaspoon of powdered formula to 100 mls of milk. (You don't actually make the formula, just put the powder directly into the milk) So I'll be curious to see over the next two weeks, which is when we go to clinic again, if this makes much of a difference or not. 

Other than that this week has been all about rolling and learning to sleep unswaddled! Nash is rolling up a storm and even attempting to crawl. It's a pretty pitiful attempt, but an attempt none-the-less. The rolling lead to me realize it was time to lose the swaddle at night. On Tuesday night he was starting to roll over in his crib and I was afraid that if he rolled over in the middle of the night swaddled he wouldn't be able to move. When I mentioned that he was still swaddled to the nurse at the Wednesday drop-in she looked annoyed. Not so much annoyed at me, but at the fact I hadn't been advised not to do so past six weeks.

So Wednesday night we tried our first night unswaddled and I decided to go cold turkey. We already had his legs unswaddled, and one night with one arm out, so I figured just rip the bandaid off and go fully unswaddled and it wasn't so bad. He started off by half babbling/half crying. We had his "Sleep Sheep" going full blast and he had his "lovey" (little blanket/stuffed animal thingy) draped over his face and he was almost flipped onto his belly. Quite the sight! Then I lean over to look at him and take his "lovey" off his face and he looks up at me wide-eyed and smiling. I thought I was in for a long night. He finally drifted off and then woke a few other times throughout the night. He even turned on his aquarium at one point in the middle of the night and watched it until he fell back asleep. I did cave and bring him into our bed for a couple of hours but honestly, it went better than I expected. By night two, all is well. Turns out he is a side-sleeper and just loves to pull things up over his face. Sorry, these pictures are a bit grainy as they are from my cell. Hopefully he continues to sleep well and then eventually I'll be ready to move him into his own room!

Night one of being unswaddled

Great Strides Walk - Team "Cash for Nash"

So the month of May use to be a time where we would look forward to nicer weather and the first camping trip of the year with friends. This year we will look at May as a chance for us to raise awareness and funds for Cystic Fibrosis as May is "Cystic Fibrosis Awareness Month". I know that there are so many fantastic causes out there and that everyone has one or two that they usually contribute to but I just would like to show how you can make a difference, even if it does not involve donating funds.


Where does the money actually go?
Well I totally agree in doing your homework before you give away your hard earned money so here is what I've found:
Use of Funds (Taken from the 2010 Annual Report posted on the Cystic Fibrosis Foundation Page)
Programs 72%
   -Research 43%
   -Treatment & Patient Services 19%
   -Education & Public Awareness 10%
Administration 13%
Indirect Fundraising Costs 11%
Volunteer Support 4%
2010 Annual Report


So if you would like to donate to Cystic Fibrosis you can go to my: Team "Cash for Nash"  Fundraising page. We have created a team rather than doing the walk individually so if you are in the Calgary area and would like to join our team, with no fundraising obligations, we would love to have you walk with us! Here is all the info on the day:

Great Strides Walk - Sunday, May 27th
Great Strides Walk - Calgary, Sunday May 27th

*For the past several years I have also participated in the MS Walk with my sister, Barb. My sister and I will still be doing the MS Walk this year but will be doing it in Calgary as the Red Deer walk is the same day as the Great Strides walk. The MS Walk will take place on Sunday, June 3rd.

Here are a few other ways you can make a difference for children like Nash off the top of my head:
-At "Toys R Us" and "Babies R Us" they often ask if you would like to donate a dollar for the "Star Light Foundation". This goes to support many programs at Children's Hospitals around the country. Similarly, Dairy Queen often supports local Children's Hospitals.
-Children's Hospital Lotteries - Who doesn't want to win a giant house or new vehicle?!?!
-Kinsmen/Kinettes local fundraising events
-Shinarama which takes place at many post-secondary schools across the country during Freshman Week

If you are not interested in donating funds there is one more huge way you can make a difference. Discuss with your family the option of organ donation and sign your card if you feel this is something you are comfortable with. I know for myself, for years I have made it very clear that my organs are up for grabs when I am gone. So many people have never put any thought into this or just haven't gotten around to signing their card. If you do end up signing your donor card after reading all this we would love to know!

Other ways that does not involve donating funds include:
Donating your Shopper's Optimum Points!
http://www.cysticfibrosis.ca/en/getInvolved/shopperOptimuinPointsDonationProgram.php

Or you can donate your time! If you are in Calgary and wish to join P.J. and I, we plan to volunteer our time at the "65 Roses Golf Tournament" in Calgary at the Earl Grey Golf Course. Let us know if you'd like to join us and we will provide you with more information!

Thanks in advance for all your support! Karen, P.J. and Nash XOXO