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.