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.