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.
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Nash snuggling during physio |
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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.
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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.
I'm so amazed to see how well you handle everything...you're an amazing mom. When looking at the physio pic, I can only imagine how difficult it must be to keep Nash in place, especially for something he doesnt enjoy.
ReplyDeleteSo happy that he's doing so well and that has alot to do with the deligence & dedication of his great parents.
Solange. xox
Thanks for the note Solange! You're so sweet! We try our best and are happy with how well he handles it all. You should see him take his medications...just like he's done it his whole life, haha!
DeleteXOXO
Do you still have a nursing pillow? Or did you ever use one? I found that having Rowan lay on her side on the pillow was very helpful... I remember the first time Rowan was really sick was a scary time - now looking back I think we were also relieved to just get it over with and see that in the end it wasn't as scary as we thought it would be. You're doing great mama - Nash is a lucky little boy :) (it's Kelly Tibbets btw - would only let me post as Anonymous)
ReplyDeleteHaha, I knew it was you Kelly as soon as I saw Rowan's name! No, I don't have the nursing pillow anymore. I had used it for physio when he was younger, and have tried regular pillows etc. but so far having him on my lap or laying on the floor on his side is the only way we can get anything for the sides remotely done.
DeleteHey Karen, it's so good to read about how Nash is doing. Tough little fellow hey? Would you please email me your current address and cell number. I texted you a few times a few months back and never heard back so assumed that maybe you have a new number.
ReplyDeleteI am so glad that Nash's first cold healed quickly - prayers for all of you guys.
Love the Walshes
Heidee!!! We miss you guys so much! My number changed last year. Email is still the same. I'll email you and hope we can get caught up, it's been too long!
DeleteNash is adorable! We also had manual PT challenges. It is fun to see what new ideas you can come up with and do PT as they grow. Our cfer is 3 years old now and thankfully we got the vest when she was a year. Hopefully that is something you can do too!
ReplyDeleteThanks for sharing your journey with us. We also have a blog at:
www.mommyformadeline.blogspot.com. Madeline was also diagnosed with CF early...at 3 weeks old. If you get a chance- check out our journey!
Sandy
Thank you Sandy! Our clinic has advised us that it is up to us, but in their opinion the vests are no more (or maybe not even as) effective as doing it all my hand. Also, there is no coverage for vests:( Might be something we have to research a bit more as time goes on.
DeleteCan't wait to check out your blog and read about your journey as well!