Normalcy, what is that? Being a mom to 5 boys, my life is definitely not normal. Having children on the spectrum means my life isn’t normal, and having one with different medical needs puts me at a lack of normalcy as well. For someone who is very type A and must control everything, this is hard to handle. However, today wins at normalcy.
C learned how to ride a bike without training wheels today. He just hopped on a bike and took off. I can’t stop crying, not because I’m sad, but because with all of this crap he’s been handed I’ve always said I just wanted him to have as normal of a childhood as he can get. And here he is, 6.5 years old and hitting a huge milestone of childhood.
We had a really good follow up from ENT today. The surgery was successful, and his left ear is healing beautifully. We are a go for surgery on his right ear in March. We have a speech therapy eval in February and maybe just maybe we can get him on track for speech. We can tell a huge difference in speech and hearing just in the 2 weeks post first surgery. His left ear isn’t completely healed, so I look forward to seeing his progress.
I am choosing to not dwell on the what ifs with EOE. I do think he will end up with a G-tube eventually, just to let his esophagus heal enough to where we can start trialing foods. I don’t want to, but I also know that the EOE is making his ears worse, and we have to fix it. If that means a g-tube then that’s what it is. We already know he reacts to most all of the top 8 plus chicken and beef and bananas, so his diet would be extremely limited. Even if he’s not showing a ton of signs of EOE now, he will. As he gets older, the damage will continue and it will get worse. We will have to fix it.
For now, though, I am basking in the normalcy of childhood.