Image by Mantrabond
Update #3: Day 12, 8 July 2018
Ohhh, that feeling when you wake up every morning to an alarm reminding you it’s time for ORKAMBI!
Seriously! I have one cool upbeat tune that plays everytime ‘O’ is due. It reminds me every morning of the path we’ve taken to now and of the amazing little PINK PILLS that are giving us hope… that and the undeniable fact that my boy has a fighting chance!
If nothing else of value has been achieved in my life, I know THIS is something I will forever be proud of. I get emotional every time I think about it.
It has been some time since I did an update on Matthew’s progress, so here it is!!! You know the old saying, “no news is good news”… well, that is exactly how it is.
Matthew is doing incredibly well.
Every morning and night he takes those pills. Within the hour we know they have activated because he starts coughing. We do the physio (and he lets me help – YIPPEEE), sometimes there has been very little that has moved but most times like today, Matthew shifts heaps. Mostly it is dark and I do wonder if he did physio all day if it would keep shifting?!
Matt is reporting that he is starting to feel better but it is very difficult for him to articulate what that means. I see a kid who is getting up earlier and sleeping less. A kid who is facing some of his fears and making more of an effort to push through those difficult times. He is trying to engage more in conversation too and these are all huge steps.
Small changes all add up
We don’t go back to the hospital for another couple of weeks yet and it will be at that time when we know ‘statistically’ how things are looking. In the meantime, he remains off of all antibiotics and has actually reduced his drug intake significantly. I think we calculated that he has come off four or five medications a day which equates to about 12 pills a day less that he has to take.
Most of you will know that Matthew has maybe completed 5 weeks of school in the first term (I am not even sure if it was that much). He has been living with terrible anxiety, has been in a depressive state and of course has at times been sick as you know. The thought of getting to school was so overwhelming it made him sick.
Well, you could have knocked me over with a feather when last week he declared that he intends to go back to school full-time next term. There had been a little bit of talk about going back to school, but it was centred around a ‘part-time’ approach or alternative education opportunities. He took a big step of actually visiting the school on Thursday and getting everything in place. This is HUGE!
The physical and the mental
In addition, he is slowly but surely coming out of his shell. He has turned a corner and I couldn’t be happier…. okay maybe I could but this progress makes my heart sing.
In three and a half weeks we head off on a trip to Far North QLD that my mum booked for her girls and her grandbabies way back last year. I wonder if unconsciously she knew it would be spectacular timing? I wonder if the universe had something to do with it?
Either way after everything that we have faced this year (and there have been many things not Facebook appropriate we have also been dealing with) I feel like it is just what the doctor ordered!
It feels like our reward
Thanks for listening and following, you know I appreciate it!
She would play with Matthew so I could concentrate on working with the doctors and CF team. She sure is an angel. Happy Birthday Nanna.
Until next time . . .
Create your own Sunshine x