We got you!

Trying to pull my mashed thoughts together. Sometimes you just wish time would stop so you could catch your breath but it doesn't work like that. The clock continues to tick and hours continue to pass no matter how much we need to catch our breath. 

I feel like I cried a thousand tears in the last 24 hours. I could have used a minute to catch my breath. Carter has been struggling here and there for the last year with painful ankles. We initially thought overuse with all his sports and then we thought maybe a growth spurt so we kept pushing forward but it was progressively getting worse and worse. All of September was tough for him. Some days he couldn't walk up the stairs from his bedroom in the basement in the morning. Holding onto walls to help support him walking down the hallway and agreeing to piggy-back-rides to get into the gym to watch a basketball game.  My heart growing more worried each time. 

 After an Xray, ultrasound, bloodwork, chiro, physio, shockwave, multiple exams and a 3 hour appointment at the Alberta Children's hospital yesterday Carter has been diagnosed with "JIA" Juvenile Inflammatory Arthritis. Aggressive childhood arthritis. We saw multiple nurses and doctors. Its not good and is progressing quickly. He needed to start an aggressive treatment immediately. I tried my best to hold it together but hearing the doctor formally diagnose him made all my tears stream down my face. Immediate worry and shock. 

Worried for Carter, for Brian. Brian having a very similar experience as a teenager is a blessing because he can empathize with Carter but also a curse because its giving him PTSD. Its hard. So hard. I feel nauseous, have barely ate and can't stop crying when I think about it or see all the new pill containers and medications on the countertop. 

We have a whole team who will be there for Carter including a social worker who we will all meet at our next appointment in December. His rheumatologist team seems really great and super supportive. They were compassionate to all our feelings and questions and uncertainties. He validated how crappy this is and vowed to make Carter's life better any way he physically can. He even gave him a $25 gift card to Walmart to say "sorry this sucks". 

This isn't curable but we will try to treat it and hopefully it will go into remission at some point in his life. My heart currently feels shattered and we're all just praying he can continue to play basketball and football and golf and all the things he wants to do! 

We were given so much information, support groups, and lists of things to get an appointments to make and I just feel like Im drowning but we will be ok. Brian and I are a great team and will literally do anything on earth to help Carter. Carter is a literal superhero. He barely complains and doesn't want to stop any athletics so we're going to do everything in our power to make sure that happens for him. 

He said he is feeling worried and overwhelmed (me too buddy xo) so we're just living at his pace right now and what he's comfortable with. 

Today he started Prednisone. 8 pills every morning for the next week, then 7 pills everyday for the following week and so forth for 3 months. This is to stop the progression immediately however because its a steriod, he can't be on it long term so next friday we are starting Methotrexate. We are all worried about it. Brian's personal experience was taking it friday night and vomiting for days after. He did this every friday night for months. It never helped him but was just so hard. Its a fraction of a chemo treatment and although they've said Carter might not get sick Im not holding my breath. This is the first step that needs to be taken. It has been so bad that Carter even talks about a wheelchair on the bad days (even if he says it only half joking). 

It can affect his vision and he could even go blind if not treated. So, somehow we will need to be brave and try it. His rheumatologist is planning to work closely with him to find a balance of not being sick and being able to walk. 

And one thing I know FOR SURE is that Brian will be going to war for our boy. He already has. The waitlist to see a paediatric rheumatologist was 9 months. Brian went nuclear and got Carter an appointment in 2 days. He is THE BEST advocate for Carter and we are grateful for him. 

In the near future, we will be doing genetic testing on Carter (and hopefully Bentley and Penny too) to find any other markers we should know about. There was just so much information to swallow. I wish I could pause time, catch my breath and then push forward. 

I will say that after his 8 prednisone pills today Carter is already feeling relief. He even showed me how he can "walk like a normal person" as he strut with confidence up and down the hallway in our home. I felt joy for him for something as small as walking without holding a wall or limping in pain. 

I wish this wasn't going to be a part of Carter's story but it is so we will try to write it with joy and positivity. Carter is the perfect author to his story. He will take it on the chin and press forward, he is such an incredible person and I am so grateful he belongs to our family. 

You got this, Carter. We are beside you the whole way, we got you! You're amazing, never forget it.