Kale had a follow up appointment yesterday in Birmingham. It's looking like the skin on his right eye is starting to wear thin--which has Dr. Scruggs concerned that the expander is pushing through like it did on the left side. Awesome. So she said she'll be in touch with us in a week or so and will probably have Kale back in a few weeks to remove the expander and put in a conformer. As for his left eye, it's okay. For now.
So many things are bothering me right now. His left eye looks good--to us--but to others, it apparently looks awful. I won't go into that right now, but it bothers me. I'm doing what I can to take care of it, but nothing seems to work. I'll leave it at that.
All we've been told since Kale was born that without the help of conformers/expanders his eye sockets won't grow correctly which in turn could cause the rest of his facial structures to grow incorrectly. But then I read from actual parents of children with bilateral anophthalmia/microphthalmia who say they chose to not have their kids undergo surgery or wear any type of prosthetic and they never had issues with any of that happening. The thing is, I don't know necessarily how this works with Kale since we've just found out his actual diagnosis is cryptophthalmos--the microphthalmia being a result of it.
But I can't help it. I just wish I could hear someone tell me that Kale doesn't need to go through all these damn surgeries. I just want someone to tell me that he's going to be fine and that all of this is pointless. Because that's how it effing feels right now. If this right expander of his is in fact doing what the left one did, then we have to start almost all the way over. And I just don't think I can allow that. He is 16 months old now. And all this crap he's had to go through has hindered some of his development. He might actually be feeding himself right now if it weren't for these surgeries. He might actually sleep normally. He might be walking already. But all of these things are not happening and I blame it on the surgeries. Tomorrow he has an occupational therapy evaluation--hopefully some of this can be addressed. But I'm sure it'll all come back to the fact that if it weren't for him going through all of this, he'd be right where he needs to be.
We ask his doctor questions and she tells us as much as she can, but she's new to this whole cryptophthalmos herself. She tells us that she consults with other doctors near and far to get second opinions and we greatly appreciate it. But I don't want Kale to be anyone's guinea pig. I don't necessarily feel that way...yet. But I'm worried that I will eventually.
I don't know. I guess I'm just having a hard time right now. It's pretty lonely right now because there really isn't anyone who can give us any real advice, there's really nobody for us to relate to. It's a pretty awful feeling. I hope it passes.
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5 comments:
(((((((((Kim))))))))) I wish I had advice, or anything to say that would help, but I know that without being in your shoes there's no way I can. Just know I'm thinking about ya a lot!
Kimi, I do not even know how to put into words the respect I have for you as a person and a mother. I cannot even begin to imagine what you are going through and yet you are always the most chipper faced, sweet, happy person. Kale is so lucky to have you for his mom. LOVE YA!
Oh Kimi, I have no advice for you. I wish I had a magic wand to make it all better for you and Kale. Know that even when you feel like you're all alone, you're not. You have many friends, including myself, who are there for you...if not in person then in spirit. You and Kale are always in my thoughts and prayers.
Ugh. Okay, I need to apologize. I wasn't intending for this to be some woe-is-me pity party.
I'm blaming PMS.
Life isn't bad--things are just frustrating at times. And confusing. And hard. And I know that things could be so much worse.
So, I'm sorry.
Hi dear,
I completely understand your frustration. Stella is 18 months old now, and while she hasn't had any surgeries, she is quite delayed. She has BA and some abnormalities in her brain. She's not crawling or walking yet (she is starting to pull up on furniture), and she doesn't talk at all, just babbling. I feel like I am doing everything I can, and still the progress is so slow.
I think each of these kids is different, and there just aren't that many of them, so it's hard for even experts to give us good advice. I find that incredibly frustrating. We haven't had any surgery done yet primarily because we have gotten so many conflicting opinions. I don't know what to do, but I don't want her to look horrible as she grows. I also can relate to what you are saying about not wanting to put our kiddos through unnecessary surgery.
I try to remind myself that there is no point in looking back and second guessing myself. All I can do is my best in each moment, and try to remain optimistic about the future. And we all have bad days. I allow myself to cry when I'm sad, beat pillows when I'm angry, and remember to enjoy all the laughs and snuggles and smiles. Some days I go as far as to be grateful that Stella is developing so slowly, because I get my "baby" for that much longer - kids just grow up so fast!
Hang in there, and know you are not alone. This is quite a journey we are on!
- Pauline
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