Guess it's about that time...

"...To update!
I know I say I'll get better about posting but I honestly have just been so busy and the free time I do have I've been trying to just enjoy with the kids.
It's summertime and I have six days out of the seven a week where I can do whatever I want with the kids during the day. Come September 23rd (or sometime after that) Kale will be starting pre-k and I just want to enjoy all my time with them as I can. Because once he starts that, he'll be going all day five days a week. And then kindergarten in two years. I'm getting tears in my eyes just thinking about it. Which is why I try not to. I know it's going to creep up before I know it and I'm going to have an extremely hard time dealing with it." --Summer 2011

Wow. That was over three years ago when I wrote that, but never published. So much has changed in three years which, well, obviously!

Kale did start pre-K ESE that September and attended for three years. It was such an incredible experience for him and for me. It was also very hard at first and those first few months I actually contemplated pulling him out, believing he just wasn't ready (it took him a while to adjust in the mornings...there were LOTS of tears, despite him really enjoying himself as the days went on). Fortunately, he had the most wonderful teacher, who we both adored (Kale still asks about her!). I was terrified of kids treating Kale badly but no one ever did, not to my knowledge anyway. In those three years his language and motor skills improved drastically, all with the help of his speech therapist, physical therapist, and his occupational therapist. Our world was full of IEP meetings, (and will continue to be) some of which I honestly didn't understand, and then some where I did and sometimes ended up in tears. I think now as he's older and facing new school related challenges that I am seeing here at home, those IEP meetings will finally feel like something I will be one hundred percent focused on and more determined to contribute to.

First day of pre-k September 2011, last day of pre-k May 2014

Three years is a lot to update on, so I will try to make it as brief as possible. I'm sure I will leave something out, but maybe if it's relevant to future posts (that I will hopefully make within the next year, ha!) I will make sure to write about it.


Kale still has Ms. Becky for his TVI, and thankfully she's with him now as he begins to navigate his way through kindergarten, literally and figuratively speaking. He started ESE kindergarten at the same school as Maile. This is the only time they will be in the same school at the same time, as Maile is now in FIFTH GRADE! I had those fears again about kids picking on Kale at a new school where nobody knows him, but Maile has talked about him to everyone all her years at the school. And last year Becky took him there for a tour. Maile was able to have him come to her classroom and introduce him to the kids, in hopes that they will look out for him too. Since school started back in August, she has walked him to class (or to his teacher if she's nearby) every morning. She hugs him in the hallways if she can, and yes, her friends look out for him too. I am so thankful for my daughter. The way she takes care of and loves her little brother, it would melt your heart.

This year is the year we are learning to read Braille. He with his fingers, and me with my eyes (and fingers sometimes, but dang! It's HARD!). Last year he mastered writing in Braille like a champ. He knows how to write his ABCs, knows correct punctuation, and can spell like no ones business. Did I mention he's only six years old? Reading Braille is a process, but I know he will get the hang of it.

Kindergarten has been a bit of a challenge, due to him not always doing what he's asked or told to do. It's something we are working on and trying to figure out if it's a communication thing, or frustration on his part. Or at least, that's how I'm seeing it right now. He still has developmental delays. He can talk to you if you ask him questions, but his responses are short and repetitive. He won't sit there and have a conversation with you like a sighted six-year-old would. A lot of the time I think he doesn't really even understand what he's saying or what is being said to him, which I think is affecting him at school. There seem to be high expectations for him at this stage, which I have mentioned to his teachers. I don't doubt Kale's capabilities, I just feel sometimes he isn't able to do all that he's expected to do or understand. It's something I've been mulling over for the last couple of weeks. I could also be way off and just thinking like a worried mother. Yesterday was one of those days where I actually had to remind myself that we have a tough road ahead. I don't live every day thinking to myself that I have a special needs child, but yesterday I did. And it was hard. And it broke my heart. I think it's okay for me to be sad every now and then, otherwise I wouldn't be human, right? I've never been the "why us?" type of person. But sometimes when we hit obstacles, or I watch him struggling I just want to hug him and keep him away from everyone and everything. And while he does not understand that his way is different or more difficult, I do and I see it, and most times I'm beaming with pride at all he's been able to accomplish. And other times I become like a child in my head screaming how unfair all of this is. Eventually I pull myself back together and keep moving which is all you can do. We are a pretty optimistic bunch in this family. But everyone is entitled to a bad day or two.

Kale's musical abilities have just grown and grown these past few years. There's a local music store he likes to go to, everyone knows who he is and they treat him well. If he wants to sit in the keyboard room for hours, Mr. Tony will let him. He's pretty impressive on the bongos as well. At home he constantly has music on. From classical, to French music, to Bob Marley, or Yo! Gabba Gabba, this kid can't get enough. He's also taken to listening to movies lately. His favorite is Shrek 2. He also likes all of the songs from Aladdin.

He loves to play outside, and he loves the beach. If you don't watch him, he will keep walking into the water! Mike put him on the paddle board once (sitting) and he loved it. There's not a whole lot we keep him from experiencing. I don't see why anyone would. This past weekend her learned about fishing poles and fishing. Last year for his birthday we rented a giant waterslide. He slid down it with Mike a few times and then...wanted to do it on his own! I was freaking out, of course, but he did it. Again and again. The fears he had prior to pre-K are long gone. He loves playgrounds, going down slides, and swinging on swings. Last year he rode rides as this little carnival that was down the road from us. He currently has this thing where he will copy everything we say, not because of echolalia, but because he thinks it's hilarious. It's so much fun to see how he has changed. Maybe not as much as other kids his age, but just enough for him.


As for the rest of us, we have had our changes and struggles as well. But nothing we can't handle. You either do or you don't. And we just do. Maile plays volleyball and LOVES. IT.  This child is obsessed, y'all. She is so much fun though. Super smart. And kind. Every one of her teachers she's had since kindergarten have told me at the parent teacher conferences that she has such a kind heart. And it's true. She is witty and wise, and understands a lot more about the world around her than most. You could say it's because of Kale, but I think she was already all of these things when she came into this world. The universe definitely worked in our favor when it comes to our little family.

That's about all I can think to write about at the moment--and I really need to do the dishes and attempt to straighten up this mess of a house. A mother's work is never done, y'know! Definitely in this house, anyway (I'm the worst when it comes to all of this domestic stuff!). I hope to update more, give more insight if needed, or add anything I can regarding raising a blind child. This life isn't easy, but what life is?

Oh! Before I forget. Happy White Cane Awareness Day! If you see someone with a cane, obviously visually impaired: MOVE OUT OF THE WAY. Seriously. You would think I wouldn't have to say that. You'd be wrong. 

Crypto--what?

A month or so ago, Kale's doctor at UAB had mentioned to us that Kale's diagnosis included something called Cryptophthalmos (hidden eye)--a rare congenital anomaly in which the skin is continuous over the eyeball with absence of eyelids (simplest definition I could find courtesy of Wikipedia). Dr. Scruggs briefly went over it but I'm pretty sure she was telling us this after one of his surgeries so some of the information kind of went in one ear and out the other.

Since then I have done all the research I could to find out more. Unfortunately, there isn't much out there that isn't associated with something called Fraser Syndrome (which I was pretty sure Kale didn't have). So I had e-mailed Dr. Scruggs a week or so ago with a bunch of questions that I have been meaning to ask (but somehow always forget to ask). She had contacted me and let me know that she received the e-mail and was doing some research and would respond once she had all the correct information--cryptophthalmos is apparently exceedingly rare (supposedly only a little over 100 reported cases, around 30 of them isolated--crazy, huh?) and certainly not anything she has ever dealt with.

Well, today I finally got her e-mail. Kale has what is called isolated complete bilateral cryptophthalmos, which is, (quoting from an article Dr. Scruggs quoted from) "Failure of formation of the lid folds and globe results in skin extending from the brow to the cheek without identifiable adnexal [eyelid] structures.  Ultrasound may identify a vestigial ocular structure or cyst within the socket." 

Because his is not associated with any syndrome (that we know of--at least not with Fraser Syndrome), his crypto is isolated. 

There are 3 different types of cryptophthalmos: complete, incomplete or partial, or abortive. Dr. Scruggs sent me info on all types and his is the complete type (which I described a bit ago). 

One of my questions was whether his microphthalmia was a result of the cryptophthalmos or the other way around. She said that if an eyelid is not properly formed, then the globe (eyeball) will be abnormal as well. So, the microphthalmia is a result of the cryptophthalmos.

How does cryptophthalmos happen? Here's what Dr. Scruggs said: 

"From what I have read, cryptophthalmos results b/c of an early embryologic failure of development of the eyelid folds.  Development of the eye is totally dependent on having a normal eyelid, so if lid development fails in the embryo, the globe cannot develop normally.  I do not know why Kale has a small (microphthalmic) eye on one side and a full-sized (but still abnormal) eye on the other (for which I do not have a term--there was no cornea, only sclera)."

So. There you have it. Kale's diagnosis is actually Isolated Complete Bilateral Cryptophthalmos (with Microphthalmia). I don't know if he's still considered as having bilateral microphthalmia--she's saying his left eye is full-sized (but abnormal), but we've been told that while it appears to be normal in size, it is still microphthalmic. 

It is nice to finally know everything. I always just thought Kale's microphthalmia was more severe than others--and we've certainly had issue after issue with his lack of eyelids. Turns out it's just a more difficult situation with him because of something else entirely. Not that it's a good thing, but it makes it a little easier to understand. For me, anyway.

I decided to start this blog to keep those who know us updated on the going-ons in our life, and to share with those who don't know us, but have similar situations like that of our son, a little about us.

I am a married mother of a 4 1/2 year old version of myself, Maile.
We also just had a baby boy, Kale, on September 22, 2008.





Kale's eyes did not fully develop in the womb and he was born with a condition called Bilateral Microphthalmia (meaning "small eye"). We were told his is a severe case, which is based on the size of his eyes. As of now, he is blind. I say "as of now" because we just don't really know. We believe he has some light perception but we probably won't really know the extent of his visual impairment until he is older. His eyes are still shut, but they seem to be opening up a little more as time goes by.

There are some issues with his hearing, but we've been going back and forth with this for the past eight weeks and still won't know anything until January 5th, when he goes for some more testing which will hopefully give us some answers. We're seeing Dr. Chicola with Nemours and are impressed with him already just after one meeting.

Until then, we are just loving him and all the smiles he brings to our little family. Maile just adores her baby brother and we are just in heaven with them both. Check out how "healthy" our butterball is! He's 10 weeks old and as of last week, he weighed 11 lbs., 10 oz. and is 23 inches long! Doc says he's perfect though, which is no news to us.


The past ten weeks have been jam packed with specialists and doctors visits all over town. Cardiologists, audiologists, pediatrician, ENT...it's kind of nice to have a week where we don't have to go anywhere!!! We don't have to go for another two weeks actually, and that's just for Kale's 3 month check-up. He also has to have the Synagis vaccine (to prevent RSV) every 28 days, November through April until he's two. Fun, fun. Here's hoping he becomes immune to the whole fear of getting shots as he gets older.


Yesterday a few ladies from Early Steps Intervention program came over to do an evaluation on Kale and ask us a bunch of questions regarding his development. They rang a bell around his head to see if he would move towards the sound...he was kinda iffy on that. They also shined a little light back and forth in front of his closed eyes to see if he'd "follow" it. He did! Somewhat. But they totally noticed it and while I know there are some parents of children with Microphthalmia that say light perception is no big deal (I read this on a message board recently), it's still something to us. Maybe in a few years it won't matter but right now it does.

The physical therapist and the ITDS (infant toddler development specialist) both said that Kale's on track development wise and they were amazed at his neck and head control. The PT also mentioned that people who are blind usually do not lift their heads up since there is no real motivation to do so. But Kale is always lifting his head up and "looks" around. His little eyes seem to be searching for something, even though they're closed. It's kind of hard to explain, you'd just have to see it for yourself. I'm glad the ladies noticed. They said that he's got to be able to "see" something, even if just light and shadows. But who knows.

The next couple of months are just gonna be the ignorant bliss kind of months as Kale isn't scheduled to see a PO (pediatric ophthalmologist) until March. We're taking him to UAB to see Dr. Cogen who treats Kale's condition a few times a year. We were originally scheduled to see the only PO here in our area, but have decided to go elsewhere for our own personal reasons.

Oh! I almost forgot! I got Kale to laugh today! I was doing what I could to make him smile and he laughed twice!!! I had to call Mike at work and tell him. I know it doesn't seem like much, but when your baby can't see you it gets frustrating not being able to communicate through sight. So the smiles he's been giving us the past week have been like little pieces of heaven and then today when I got a laugh? I almost cried, I was so happy.

Anyway, there are going to be rough patches, I know this. But I believe that the good times and good things are going to outweigh them significantly.