This week my boys have had appointment after appointment. To say our week was busy would be a slight understatement. To recap our week our appointments went as followed; Neurology, 3 hour meeting with the Department of Mental Health regarding each of the boys individually, Brody’s home visit from his teacher, pulmonary appointment in KC, 2 hour therapy evaluations for P and to end the week with our favorite therapists for the twins! Whew…we did it and we made it out alive! So glad this week is almost over!
I had updated everyone about Neurology but to give a brief overview, Peyton will be doing a sedated MRI next week and a 24 hour EEG in weeks to come for tremors and to rule out silent seizures. We are eagerly awaiting to find out many different things and this is a relatively newer concern for P. We are believing everything will come out just fine!
As for Wednesday, mom and I traveled to KC with the twins to see our favorite doctor, Dr. Carver. This man is literally one of the kindest humans that we have encountered on this journey with P. We trust this man with every ounce of our souls. He is just that doctor that is one of a kind and has a wonderful gift with children. He was Peyton’s Pulmonary doctor at the hospital both times when he was a patient at Children’s Mercy. So we just always felt so at ease when we saw his familiar face walk through the door.
Peyton has been healthy as a horse since his last admission on Christmas Day last year. Dr. Carver felt really optimistic that Peyton had finally turned a corner that we had been waiting on for the past 2.5 years. Peyton has no other symptoms in his daily life that led us to believe otherwise. We did a chest x-ray to get a new baseline of what his lungs look like after a long healthy stretch. We grabbed the x-ray as we were leaving and they would call us with results later that day. The chest x-ray was absolutely awful for P. He hates when unfamiliar people touch him and doctors rank #1 on his list of people who send him over the edge. The radiologist and myself attempted to hold him down with no luck, so to make a long story short, it took 3 additional people to hold him down. 🙁 It was absolutely heartbreaking to watch. But this unfortunately is pretty normal for Peyton.
Though he be little, he is fierce!
We left Children’s Mercy and went to lunch and continued on with some shopping in the area. On our way home I received a phone call giving us news that I was not at all expecting. The nurse said that Dr. Carver had looked over the x-ray and was still highly concerned in the status of Peyton’s lungs. Especially after going an 8 month stretch with no respiratory issues. For some reason Peyton’s lungs are not recovering like they should be and they’re not exactly sure why. Sure he’s been hospitalized every winter but by now there should be some type of improvement.
It definitely was a curve ball I was not anticipating and was truly looking forward to getting a good report. I had finally thought we turned a big corner as on the surface he looks wonderful!
Here we are and after a couple days of overanalyzing the conversation, an additional conversation reviewing the news, countless research on the internet, lots of tears and frustrations, I have to understand that it is what it is. Worrying myself sick over it will not change what the outcome was. It’s weird because I know he won’t outgrow Autism, I know that the path we’re going down is unfamiliar with Peyton’s Autism Diagnosis. I just can totally accept that an be ok with it. I’ve accepted so many of the things his life may or may not be and have come to complete contentment with it. I don’t want to sound negative but I’m very much a realist and truly like to be completely prepared for what may come. I handle the outcomes better and I can accept it easier by preparing myself before it happens. I know it’s not exactly the best way to be but for me, it’s what works. And right now I have to do what works or I will go crazy.
My little sister Hannah always is the positive light and saying “this kids gonna be a world changer! All 3 of them are!!”
And I 150% believe she is right. So I don’t want to sound like I’m not positive for his future but I have accepted that his future will most likely look much different than other “typical” kids his age. And to me, that’s what makes Peyton who he is. This is the way God created him to be. He has changed our world from the moment he arrived and our perception on life wouldn’t be the way it is without the hard lessons he’s taught us. He’s taught our entire family what miracles look like and lessons we never though a small child could teach.
The health side for him is the hardest part for me as his mother. I try to be a doctor myself and solve all his problems, knowing damn well I can’t. And that, that just sucks. Maybe it’s all the new health concerns that are coming to light and maybe the issue with his lungs was finally my breaking point. Maybe this weeks overload of information was more than my brain, body and heart could take. I honestly just don’t know. The one thing I’ve learned this week is that mental exhaustion is worse than physical. Ive made myself go to bed and shut my brain off every night to try and stop thinking so much. I want to be better about it but it has always been a constant struggle for me that I’m trying my hardest to do better at. Once again, just being real here and sharing the realist struggles I’ve ever been through.
My other kiddos have their health and for that, I am so completely and utterly thankful. As for my sweet little P, we WILL get through this. However that may be, I promise that.
We have the best and most supportive family. My sisters who would move mountains for these boys, grandparents who would give their right arm and friends who are and have become family and not strayed during these challenging times. For all of you who play an active role, thank you. We are so blessed to have all of you.
So please continue to lift Peyton up in prayer as we are in the process of also seeking a second opinion for his immune system that we have never gotten a clear answer on. ABA therapy is a huge one that he will hopefully start soon! And as he goes in for his MRI, EEG and for the upcoming virus season that is right around the corner.