Today was one of those days. Somehow things just got overwhelming for C and me. I got a call from OT, (occupational therapy) they saw Skyler in the hospital and now they've scheduled his follow up appointment for April 1. It's at the same hospital where he was in the NICU for two months. When I told C he basically blew up. He said he was tired of everything, tired of the endless appointments, he hates that we have to pay for all the drugs to keep our baby alive. How it's unfair that our baby needs drugs to live. I don't want it to sound like we're ungrateful. We have a live baby, he is perfect in every way, but at the same time he is just not like all the other "normal" babies.
Honestly, this is kind of tough sometimes. I am over the moon happy with my baby, I love him more than life itself and I will do anything I have to do to provide for him and keep him happy, healthy and loved. But sometimes I do feel worn out with the worry, the endless appointments and administering all the meds. Yet at the same time I know full well so many people have it far worse than us, babies with problems far worse than Skyler's, and people whose babies don't make it. But I can't just sweep it under the rug and pretend like this is easy, yes he is alive and he is "relatively" normal, but he currently has 5 specialists to see, a cardiologist, a neurologist, an endocrinologist, an occupational therapist and an opthamologist. He has hormones that need to be administered, and he has physical differences that you can't see in pictures. I'm not comfortable telling you what they are, but hopefully one of the meds will help make it "normal". Sometimes C and I get overwhelmed with it all. There is so much to keep track of and so much to worry about.
And it's such a rare condition, I feel somewhat alone in this. It's just me and C. I've been searching online for anyone who talks about hypopituitary issues, but so far nothing. It seems the focus of my blog has shifted. This morning I caught Skyler looking at Sophie's picture, I told him about his sister.. But it seems I haven't been discussing miscarriage/pregnancy loss much anymore. Now that I have Skyler here, it's all about him, and his medical/hormone dependancy. I understand people not following this blog anymore. Of course you are more than welcome to follow along and watch Skyler grow. If anyone knows of any parents with special needs children or hypopituitary issues, please point them in my direction or send me to them.