This past weekend we attended an Early Intervention Family Day event. Due to his condition, JP automatically qualifies for Early Intervention services. We have recently used them to help him adjust to his AFO and start walking. Both the boys loved the event (especially Aiden). We went to a bounce place where they both "jumped" in inflabale playsets. Their favorite was the inflatable slide. As I looked around and started to engage with other families, I realized many people were there with kids that were mentally delayed, had cerebral palsy, etc. and realize I'm fortunate to have a child with FH. Although he's facing surgery so he can "function" through life normally, these other parents struggle on daily activities.
But, I am struggling myself. We went down to Sinai's Rubin Institute for Advanced Orthopedics (RAIO) to get a 2nd opinion on JP. We love his doctor at DuPont and dealt with some serious guilt about this (think cheating on a boyfriend/girlfriend). She was trained at the RIAO, but we just felt we owed it to JP to go down there and see what they had to say. While down there JP had x-rays, we met with Dr. Standard, and got a tour of the facility. It was very nice and Dr. Standard gave a similar diagnosis as Dr. Nichols (JP's current ortho. Doc saw), which gave us such comfort.
A normal parent would be okay with that, but for this Momma i have gone into a downward spiral. I almost wish they saw differences. At times I feel like I'm right back to where I was when we found out at my 20 week ultrasound. I struggle with what is the right choice for our family. Of course everyone wants the best for their child, but for me, there are children involved. We love JP's current doc and have such confidence in her, but RAIO is supposed to be the best; which I want for JP. But, then I think if we go to RAIO, that's a week away from Aiden and him living with other family members. Plus, there's the initial cost outside of what the two insurances JP receives covers. So I sit at a crossroad in what to do.
I'm also following a little girl Gracie right now. She just had her first surgery at 16 months. She underwent the same treatment JP will receive sometime this summer. I look at the pictures and my heart breaks to know my sweet boy will have to go through the same. Yet, Gracie is doing well. A day post-surgery and she isn't letting her situation stop her; she's weary, but determined. I continue to keep her and her family in my prayers; especially because they're currently away from their oldest baby - Gracie's big brother; a very similar situation for us.
I know my baby is okay and I'm reminded by family all the time of what he has accomplished thus far, but the day-to-day reminder has been getting me down currently. So, I continue to try to remind myself of how I felt at the Early Intervention event - that I'm fortunate - and surgery/therapy is the only struggle JP faces.
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