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
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