Kenny had his comprehensive care appointment today. They check his weight, height, lungs, BP, and nutrition. It all went fairly well. He hasn't lost or gained weight but the doctor noticed that he looked a little sunken in in the cheeks. I noticed it too, but didn't want to sound like a worry wart of a mom. We decided to start back up on his duo cal to see I'd that will add some weight to his body. Their main concern is that his body will start sitting down if he isn't getting enough calories...so were going to bring on as many calories as possible.
She asked me I'd I had any questions to which I said no, then she asked me how I was doing. Ok...well...you don't ask someone who has been going through he** these last 6 years, how I'm doing. I bawled my eyes out! It just sort of happened, ewps. I told her the honest truth...I wasn't good. I have horrible flashbacks of when nick was dying and every time Kenny was so sick, I thought he was going to die. I have anxiety over what to,or row will bring and...well...pretty much...I'm a mess. The PTSD and high anxiety that I've been facing has gotten me to the point where I keep asking what more? Waiting for the other shoe to drop. I said I was afraid of losing Kenny and she completely agreed that that was a very valid fear. She told me she love Kenny and is so sorry that were going through all this with him. I've been so strong for so long, that everything has finally caught up to me. The doctor reassured me that as of today, Kenny is stable. His lungs sound a little sluggish, but attributes it to a cold starting.
This whole life is something that I NEVER in a million years, thought I would be experiencing. It's very hard, actually...it's very painful. I did mention to his doctors about a make a wish for him and we all are looking into that. We don't know what the future holds for him...and I get physically sick just thinking about it. I want him (and the rest of my kids around until they are old and have to bury my 100 year old a$$). There is just so much on our shoulders and it weighing very heavy. Some say its our cross that we bare...but no..it's just so very much.
So...our Kenny is "stable" his is ok and for now, I will take that with a smile...but deep inside I just wish he was just healthy.
This picture is one of him sleeping with his favorite baby...buddy.