I have so enjoyed seeing everyone’s back to school pics this week! We have so many friends with kiddos going off to college, and some just beginning their journey in kinder (and our best friend’s have both! 😳)
It makes my ❤️ happy.
We were to start school this week too. But looks like Monday will hopefully be a better fit.
This is what our back to school looks like right now.
Fever, chills, dizziness, aches and pains. He’s slept more in the past 48 hours than he’s been awake. He did push through yesterday morning and did some mowing. But it completely wiped him out. He doesn’t want to go to the doctor. So I guess we’ll just medicate with ibuprofen and tomato soup and wait it out and see what the next couple of days looks like for him. He is definitely battling something. (Low O2, fever, high heart rate….everything is dramatic when he feels bad.)
I don’t share these stories of struggle for sympathy, rather for understanding of what life still looks like for Kaston. On the outside, he appears to be the typical teenager, hanging with friends, loving life and living his best days.
Putting on a front that no one sees. Struggling on so many levels that is invisible to everyone, except for me and his dad. And often times it is invisible to even us. He sure hides the struggles well and has learned to push himself past them so that he can live as normal of a life as possible.
But days like today remind us what he struggles with on a very regular basis behind closed doors. They hit him hard and fast. And he can’t hide it any longer when his body says, no more.
Everything is scheduled for his next appointment at Texas Children’s Hospital. Kaston & I will fly to Houston on Tues Sept 3. On Wed he will have an ultrasound with Elastography, lab work, consult with liver doctor and his first counseling session with a psychologist that helps kids cope with chronic illness.
They want to make sure he is of sound mind to deal with all of these new changes and recent diagnosis. It is hard enough being a teen-ager and a junior in high school. But to add the additional stressors he has to deal with is alot for anyone, especially at his age. I love that TCH is not just about his physical well-being, but also his emotional well-being.
We get a day off on Thursday, then on Friday he will have a cardiac work-up and consultation with his cardiologist at the TCH West campus in Katy since that is where his cardio is scheduled to be at for clinic that day. We are scheduled to fly home Friday evening.
We are hoping to get to stay at the Ronald McDonald House again. But they have had a chicken-pox outbreak and the CDC is currently not allowing them to accept any new guests. They are hoping that by August 21, they will get the all clear and we can get on the list again.
Then we will do it all over again in November. There is talk of another cath in November, but we may need to wait until Feb or March. We basically will schedule from appointment to appointment based on what they find from each visit.
Their goal is to see exactly how his heart, liver and spleen are responding to the Sildenafil. We desperately need this drug to work.
So if you would, please keep the boy in your prayers. For him to get over whatever crud he’s got going on right now, for us to have a productive school year, for his body to react to this medication and for his mental and emotional stability.
Thanks for the love!
Snyder Time 