tag:blogger.com,1999:blog-78679999894865618912024-03-13T11:56:40.712-07:00(M & K)²kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.comBlogger71125tag:blogger.com,1999:blog-7867999989486561891.post-19408575700121236652014-10-15T08:30:00.000-07:002014-10-15T13:25:05.552-07:00Guess it's about that time...<em>"...To update!</em><br />
<em>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.</em><br />
<em>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."</em> --Summer 2011<br />
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Wow. That was over three years ago when I wrote that, but never published. So much has changed in three years which, well, obviously!<br />
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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.<br />
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<span style="font-size: x-small;">First day of pre-k September 2011, last day of pre-k May 2014</span></div>
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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?<br />
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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. <br />
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<br />kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com0tag:blogger.com,1999:blog-7867999989486561891.post-1182266098300403012011-01-25T21:15:00.000-08:002014-10-15T13:21:26.041-07:00Just a brief update...Who am I kidding? So much has gone on in the past four months. All good, thankfully!<br />
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Kale turned two in September. We had a pool party with lots of food to share with family and friends. Kale absolutely loved it. Sure you can say "He's two--he won't remember. What's the point?" Even if he doesn't remember, we know he had a blast. He loves the water (just like his daddy) and was pretty much in heaven the entire time.<br />
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In October we took the kids to Disney World. It wasn't a long trip--just a long weekend, but that ended up being a good thing since on the morning of our last day there, Maile came down with an awful stomach bug that had her sick the whole trip home. Poor thing was on fire and unable to keep anything down. We ended up having to keep her home from school an extra day but it all worked out. We had a good time but I think we're going to wait on another Disney trip with them until they're both much older. <br />
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Speaking of school--Maile came home today with her report card. And once again she made the A Honor Roll! We're so proud of her. Seriously--the stuff first graders are learning now is so much more advanced than what I was learning when I was that age. It's crazy! But she never falters--she enjoys learning and just really loves school.<br />
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She's turning seven in less than two months. She's been planning her next birthday party since December. Thankfully this time around it's just a small little slumber party. I don't think I went to my first sleepover until I was in third grade! How does this happen? Where does the time go? Is there any way for me to stop this? She lost her first two teeth within a week of each other and is about to lose her third. Did I mention that she's only thirteen inches shorter than me? I'm so not ready for her to not be a little girl anymore. <br />
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As for Kale, he has come a long way in the past six months. As I had mentioned in previous posts, he finally started to walk on his own over the summer which was such a big milestone. We're hoping that towards the end of the school year (if not sooner) he'll be working with an O&M teacher (orientation and mobility specialist) to start learning how to use a cane or just get used to one. He's also finally taken to eating pretty much anything without choking--thanks to his amazing OT. She had started coming over to the house in addition to us going to see her at <a href="http://arc-gateway.org/childrens-services/pearl-nelson-center/">PNC</a>. During her home visits, she comes during lunch time to help figure out ways for Kale to eat. She's been such a miracle worker having him accept new textures, to holding a spoon or fork by himself and as of last week he finally started to drink from a straw unassisted! Huge step! He still has some things to work on but he really has come so far.<br />
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He still has his random freak outs during bath time but he's gotten much better about allowing me to cut his hair while he's awake. I've learned that as long as there are cookies around, I can pretty much get my way with him. Just like his mama!<br />
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It looks like he'll be starting preschool in the fall. Not sure if we have to wait until September (when he turns 3), I'll know more towards the end of the year. But basically there are two elementary schools nearby that have preschool programs for kids with special needs and one of them has had a blind student before. His TVI (teacher of visually impaired) recommends he go to that one but it really is up to me. She and other teachers (and other specialists if he still needs them) will be there to help him. Hmmm. Will someone be here to help me? I don't think I'm ready for him to be off and in the care of others. I had a hard time with Maile going off to VPK when she was four. I eventually got over it but I'm thinking I'm going to have a harder time with Kale being gone. I know it's for the best and he'll be learning so much more than I can teach him here. But still...<br />
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As for what I'll be doing to use up all that extra time--I have an idea but I won't go into that until it's set in stone. <br />
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As for the Mike and me, we're good. Just working and trying to keep our heads straight.<br />
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We had a great holiday season with our friends and family. We aren't too big on taking the kids to see Santa because 1) Maile has been kind of creeped out by him the past couple of years and 2) Kale probably <i>would</i> be creeped out by him. So instead I took Maile downtown one night to some Christmas in Seville thing they tried out this year and we had a lot of fun. And she actually sat with Santa--all on her own, no problem!<br />
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Christmas really was great. Kale got a miniature piano (he's still blowing us away on a daily basis with the things he can play) and Maile got pretty much everything she asked for. <br />
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I remember posting at the beginning of 2010 that the year wasn't looking too good which was disappointing after such a rough 2009. Well, somehow it did get better. And at the end of it, Mike and I were able to look at each other and say that 2010 was <i>definitely</i> a lot better than 2009. (Good god. <i>Any</i> year is better than that one!) We entered into 2011 with an even more positive outlook and while nothing spectacular has happened just yet, nothing horrible has either (knock on wood). It was a relief coming into this new year without worrying about future surgeries for Kale. That's all we dealt with it seemed for the first year and a half of his life, so it's nice to finally be without any of that emotional stress. <br />
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We're finally just enjoying being a happy little family of four and that's all we ever really wanted.<br />
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kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com4tag:blogger.com,1999:blog-7867999989486561891.post-43216903449093391612010-09-14T21:05:00.000-07:002010-09-14T21:05:24.637-07:00Two and a half months since my last post. Man. I've been slacking yet again.<br />
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But I have good reasons! Maile started first grade, Kale started walking. I started working again (just a part-time gig slinging coffee). Mike is still working hard like he always does.<br />
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We've all been pretty busy. The summer flew by and I feel kind of crappy that we didn't get to do all the things I wanted us to do. But it was so freakin' hot! Hell, it still is. <br />
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Next week is Kale's 2nd birthday. Kind of a big deal to us all since last year he couldn't even enjoy his cake for his first birthday. This year there should be no problems. I've been trying to get in some practice with feeding him cupcakes (Okay, fine. We share.) He's not really into getting his hands sticky and dirty, but he can eat them no problem which is more than he could do last year.<br />
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He did start walking a couple of months ago and now he's all over the house. I've gotten better at letting him explore on his own without freaking out every second. As long as I have all the doors closed, I'll let him roam around while I try to get some things done around the house. It is so cool to watch him, though. He knows where everything is, it's like he has this map in his head. He just puts his arms and hands out for the wall/chair/couch/cabinet that he knows is right there. Sure, he's off a little bit and bumps his head on occasion, but he's doing great.<br />
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His TVI (teacher of visual impairments), Ms. Becky, started back visiting about a week or so ago. She was off for the summer so she came back to him walking and talking more and was so excited to see him. He even gave her (and me) a little treat by playing recognizable songs on the giant keyboard we keep on the floor. He played "Joyful, Joyful" and Ms. Becky almost had a heart attack. He can also play "Twinkle, Twinkle" and "Mary Had a Little Lamb". I'm not joking. The boy isn't yet two and is already playing things by ear. My little musical genius.<br />
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Maile is enjoying first grade. I am finally understanding why my parents (or any parent) would get onto me about the importance of good grades. As a kid/teenager I guess I just didn't get it. But here I am, every day studying with her and trying to make it fun and enjoyable, wanting her to get A's but letting her know that I will be happy with whatever grades she comes home with as long as she tries her best. (But I still want her to have all A's, damnit!) She's coming home with vocabulary words I don't think I learned until third or fourth grade. And algebra! Good lord. It's just crazy to me how much more is expected of a first grader than when I was a kid. Now that I'm working three or four nights a week and I'm not here to help her all the time, I can't help but feel guilty. So far, she's doing great. I know she's a smart kid, I guess I'm just terrified of failing her.<br />
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We have a trip planned next month to Disney World. Not a long trip, just a long weekend but we're looking forward to it. It's been three years since we took Maile and I think she'll enjoy it a lot more this time around. And it will be interesting to see how Kale does. I'm hoping it won't be too much for him. Crossing fingers!<br />
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I know there are probably some things I'm leaving out, but I'm tired and have a long day ahead tomorrow. Kale has a first appointment with a local ophthalmologist--he has to have one in the state of Florida in order to continue receiving services for the school district and things like that. In the past there's only been one pediatric ophthalmologist and we were not fans of his (he saw Kale in the NICU after he was born), but now there is another one who a friend referred us to. So hopefully it'll go well.<br />
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Aiight. I'm out.<br />
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Until next time.kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com0tag:blogger.com,1999:blog-7867999989486561891.post-43366376425243705812010-06-29T15:19:00.000-07:002010-06-29T15:19:59.999-07:00Ack!It's been a couple of months since my last post, huh?<br />
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Well, we decided to stop any future surgery for Kale. And so far things have been great with him! He's doing so well with everything. He even started walking a little bit last week--which is just such a big deal. His second birthday is coming up in September and I was hoping he'd be walking by then. Every day he gets braver and takes just a few more steps. He's getting better and better with eating, too. Still working on the bottle issue, though. It'll happen eventually.<br />
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Maile is out of school for the summer which means I will be the mother of a FIRST GRADER come August. Holy crap! Last year I was freaking out about her going into kindergarten. Now I gotta get a handle on her being in an actual numeric grade level? Yaaaaay...<br />
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Not a whole lot going on over here. Just trying to stay cool in this insane heat. Since the beach is pretty out of the question due to massive amounts of oil in the water and on the sand, we've been hanging out in our sad little inflatable pool in the backyard and at a friend's house. Yay for friends with pools! And double yay for those who invite us over! Kale loooooves the pool, by the way. He is such a water baby, I love it!<br />
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Speaking of our oily beaches, check <a href="http://www.lemondrop.com/2010/06/29/gulf-of-mexico-oil-spill-real-story-last-trip-to-the-beach/?sms_ss=facebook">this </a>post out that I wrote--was featured on Lemondrop.com today. <br />
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Aiight. I'm out for now until I have more time and more stuff to post about.kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com2tag:blogger.com,1999:blog-7867999989486561891.post-58832878260197423672010-04-06T21:02:00.000-07:002010-04-06T21:08:24.352-07:00A difficult decisionSince Kale's appointment last week, Mike and I have been going over and over in our heads what to do next in terms of Kale and future surgery. His doc said what we thought she would--to start all over again with expanders. She also told us once again to do what we feel is best, even if that means to get a second opinion. Granted, finding one from someone who has experience with Kale's condition is going to be damn near impossible.<br />
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We know there is one doctor in Texas who has treated someone with cryptophthalmos (she actually has something called Fraser Syndrome) but we're thinking that no matter who we go to, or who we ask the recommendation will be the same: surgery and expanders.<br />
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But then I can't help but think of other parents stories of their kids (with microphthalmia and anophthalmia) and how they've managed to do without any type of prosthetics and they have no deformities. No caved in heads. Nothing is wrong with them at all. Which goes against everything doctors warn us about.<br />
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So.<br />
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I think we're leaning towards no more surgeries---unless we start to notice any type of irregularities in Kale's growth in his facial area. Then we'll get back in touch with his doctor and go from there. We've been talking and talking about it and while we haven't made the definite decision, it does seem like that's where we're going. Otherwise, we're just going back to where we started from a year ago, and it just doesn't seem likely that anything is going to change. While we're being told it's a medical necessity, we can't help but think/feel it's not. It's all just for him to be able to wear prosthetics at some point. But I have no doubt that ten or fifteen years from now, if Kale tells us he want to go the route of wearing conformers or things of that nature, we will find someone who will make it happen for him. But for now, I think we're just going to try and let him enjoy growing into a toddler. Learning how to walk. Learning how to finally feed himself. Learning how to just <i>be.</i><br />
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He's so handsome and such a happy boy (most of the time, anyway)--and it's obvious how much more comfortable he's been this last month or so without anything in his eyes. There's no redness, no irritation, no crustiness that just won't go away. And his eyelashes are finally growing back!<br />
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I just hope whatever decision we make, it's the right one and that we're not taking a huge risk...kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com3tag:blogger.com,1999:blog-7867999989486561891.post-76779595972243632542010-03-25T07:35:00.000-07:002014-10-15T13:20:18.842-07:00Busy BeesWe've been pretty busy lately. From appointments, birthday parties, festivals, to just random spring-like days--we've been keeping ourselves occupied.<br />
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Kale started visiting his OT (occupational therapist) about a month or so ago. So far, things are going well. It was taking him a good ten minutes or so to warm up to her, but now it's taking less and less time so that's good. He gets thirty minutes one day a week with her which doesn't seem like much but the time is utilized well. We go to her office for the sessions which is cool. She has this swing she sits on with Kale in her lap--it really calms him down when he's having one of his "Get me outta here" moments. She tries to get him to do other things while in the swing--in the pic below he's playing a little piano with self-made textured keys (we have one at home, too).<br />
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She is trying to get him used to touching different textures. The main focus right now is getting him to feed himself with his hands and with a spoon. Last week, out of nowhere he started picking up his little snack foods and eating them. I honestly don't know if I can credit his OT for that because we really haven't done much yet with her but she was very, very happy when I told her about it yesterday. <br />
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Twice a week, his TVI comes over. She sings and plays with him and talks with me about all kinds of interesting things related to the blind and visually impaired.<br />
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A few days ago she had us go up to the middle school nearby where she has a visually impaired student, Deesha, who wanted to give something to Kale. Becky (his TVI) and Deesha had made Kale some little texture shaped books. So we spent about two hours over there and Kale had a great time! So did Deesha who is such a smart young lady--with some amazing manners! She could teach us all a few things!<br />
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It really was great meeting another child who is visually impaired and getting to watch her use her cane walking through the school hallways. It definitely makes me feel a bit more at ease when I think about Kale's future in public school.<br />
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Spring is somewhat in the air. I'd say at least one or two days a week we can get around without wearing a long-sleeved shirt.<br />
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We did get to go to an awesome Yo! Gabba Gabba birthday party for a friend's daughter. My friend did it all--and did such a kick-butt job. Here's a pick of Maile posing with Plex--which my friend made herself! How talented, huh?<br />
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All of the other Gabba characters were there--it really was such a cool party to attend (thanks, Diedra!).<br />
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Another cool thing we did this year, which I'm hoping is turning into an annual thing, was go to the Renaissance Fair. We went last year and had a blast. So we went again this year--and had a good time once again! I think my favorite part is watching Maile get her face painted and seeing the end result. Definitely better than anything I've ever done!<br />
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Oh! I almost forgot! Maile got her ears pierced! She did it on the 12th--the day before her birthday party. She had been going back and forth on whether she wanted to do it. It's been something I have always told her could be her decision. We have gone to the mall a few times after her telling me she wanted to do it, but then she'd get scared and decide not to do it. Which is fine--I didn't mind. But she finally did it! Here she is showing them off later that evening.<br />
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Yes, there were tears--but there was also a lollipop from the girls who did it (and she knew this from watching another little girl get her ears done before her) so I think that's what made her finally decide to do it. I was and always am very proud of her!<br />
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And finally--Maile is going back and forth on something else. Tennis. My 14 y.o. niece (who happens to have the same birthday as Maile) just started tennis so Maile wanted to, too. Until she tried it the other day. And decided she doesn't like to get sweaty. I tried to explain to her that she gets sweaty when she plays outside or goes to the park or the beach....I think she was just super grumpy and tired because she had just finished running in PE before getting out of school. So we'll see. Luckily, the sessions are pay as you go! Here are some pics my mother-in-law took (I was home with Kale). <br />
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Okay. Well, that should wrap things up for another week or so. We have Maile's spring break next week and Mike is off so we're going to try and get some quality family time in. I'm thinking the zoo, for sure. I wonder how Kale will do with that? He does have an appointment next week at UAB. Not really too sure what is going to happen with that. I'm gonna just avoid thinking about it for now.<br />
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Later, all!kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com0tag:blogger.com,1999:blog-7867999989486561891.post-17567913196846080652010-03-24T13:27:00.000-07:002014-10-15T13:19:23.120-07:00Baby gurrlMaile turned six on the 16th!!! My itty bitty is getting to be, well...not so itty bitty. Make it stop!!!<br />
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Her birthday party was a success, despite the fact that I had a mini freakout about an hour before it started. Mike ended up having to work that day so I had my hands full. My mother-in-law came over three hours early to help out but Kale was so fussy from teething, most of the time we took turns taking care of him! But it turned out great and Maile says that it was the best birthday ever!<br />
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I had gone to Target and raided their dollar bins and bought all the Easter hats, purses and gloves I could to give to the girls. I stuffed the purses with candy jewelery and other sugary treats. I made tiny cucumber sandwiches, peanut butter and marshmallow sandwiches and served pink lemonade and sherbert punch. Outside we had set up tables for the girls to sit and eat at, we had a friends jumpy house set up and we also put up a long piece of that brown painter's paper along the fence for the girls to draw and write on.<br />
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We played a couple of games, too. I had the girls race with books on their head and I also had them play a game I saw once at a baby shower that involved a blindfold, lots of cotton balls and a large spoon. They loved it! The same friend who let us borrow the bounce house let us borrow her two tubs of dress-up clothes and I put those together with what Maile already had and the girls were dressed up the entire time in one outfit or another.<br />
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My mom had bought a large bead kit and was helping the girls outside make necklaces and bracelets.<br />
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Can't forget a picture of the cake--from <a href="http://www.thecakeshoppensacola.com/">The Cake Shop</a>. They did an awesome job--Maile picked it out and it was delicious.<br />
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I did feel a bit bad for making it a girls only type of party, but you could totally tell the difference from her party this year and the ones before. I did keep Maile's bedroom off limits (and locked, haha) but the girls were great! I know as she gets older she is going to be more and more picky about who she wants to invite so I guess I just wanted to control as much as I could with this party. Totally guilty, but it did turn out great and she never complained about a thing once.<br />
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kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com0tag:blogger.com,1999:blog-7867999989486561891.post-67486456298445754822010-03-18T19:47:00.000-07:002010-03-18T19:47:08.571-07:00Back to the beginning?Ugh.<br />
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Well, Kale's surgery last month went okay. His left eye was left alone and his right one was fitted with a conformer with a large stem sticking out. I was gonna give it two weeks before it came out--which turned out to be one week too many. In the midst of a tantrum, the thing just popped out. I just <i>knew</i> it would! Maaaaan. I'd be lying if I told you it didn't bother me. I actually ended up in tears. Why? Because now we're right back where we started one year ago.<br />
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I called his doctor the next day, she was busy so I talked to her nurse (or tech--I can never remember what it is she calls herself...her name is Stacey--that much I do know). Anyway, Stacey said that Dr. S would be out the next week but suggested we try and meet with the ocularist to see if they could fit something back in there. Yeah, totally not gonna happen is pretty much what I told her. The night that the conformer fell out, his "lids" were separated. By morning, they were sealed shut again. It probably didn't help that he was sick, either. Anyway, so we won't be meeting with anyone until the end of the month.<br />
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I'm trying not to think about it. It makes my whole body ache when I do--thinking about "what now?"--what the next move is. Because we really honestly just don't know what to do. It's so frustrating. I do know that Kale is much happier now that he's free of anything being in his eyes. For the past year it's been conformer and expanders. And now he has nothing and he looks great! I know it shouldn't matter how he looks, but if you know Kale, you know he's always got some sort of funkiness going on. Crustiness and things like that always around his eye. Now? None of that. <br />
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Spring Break is coming up for Maile in a week and Mike is hoping to be off during that time. I suggested to Mike today that we should go and have our first professional family picture done. We have never had one done of all of us and the one time we were going to take cute ones of Kale and Maile together at Christmas, we couldn't because he had that scary looking thing going on on his left eye. So I think we're going to take advantage of the time we have with him not having to have any surgeries and having no type of conformer or expander and just do it.<br />
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We have been going back and forth on whether or not to get a second opinion. As for where we'd get that from? Hell if we know. Kale's condition is so freakin' rare we don't know that anyone will even know where to begin. It sucks. Ugh....the body aches are coming just by thinking about it. I think we'll just see how his next appointment goes, see what his doc says and decide from there what to do. It would just be so nice to have someone else in our shoes--or someone who has been there to give us advice.<br />
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Aiight. That's it for now. I'll be back in a couple of days to post about Maile's 6th birthday party! She turned six this past Tuesday--I cannot believe it.<br />
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Until then.kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com0tag:blogger.com,1999:blog-7867999989486561891.post-78711225135068414302010-02-21T20:53:00.000-08:002014-10-15T13:18:30.029-07:00Ack!Goodness, I'm slacking on the posts aren't I? I'm gonna chalk it up to being extremely self-involved. Is that okay?<br />
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Nah. Seriously--things have been busy as usual. I've got Kale meeting with his ITDS one day a week, and then he meets with his TVI twice a week. And starting in a week or so he'll be meeting with his OT (occupational therapist) on another day of the week. Right now, I'm just juggling the three days a week thing, but soon it'll be four and even though it's only in the morning--it takes up most of the first half of our day when I factor in getting Maile to school, getting Kale up and fed, and out the door (if it's one of those days). By the time it's over, he's down for a nap and once he wakes up it's time to go get Maile from school. The days will go by faster, that's for sure. And I'll actually have to get out of my pajamas! <br />
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Kale is having surgery this coming Tuesday. I am at the point now where I can't even keep track of what number this is. Thankfully it will only be on his right eye. His tiny conformer in his left eye (that was even stitched shut!) spit itself out a couple of weeks ago. After that, Mike and I decided to ask the doctor if we can just give that side a break. For some reason nothing is working out on that side and instead of once again putting something in there, whether it's another conformer or starting over with expanders again, we just want to leave it alone for now. Give it some time to heal. I did talk to Dr. Scruggs about it and she is completely on board with that idea. So that's a bit of a relief.<br />
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Kale's right side is okay--the skin seems to be thinning out a bit and we talked to Dr. Scruggs a few weeks ago about that when we met with her. She agreed that it looked like the expander underneath was pushing out a bit--but nothing like the nightmare that happened back in December. So the surgery on Tuesday is to remove the expander and put in a conformer with a very wide stem. The wide stem is to keep the skin of his "eyelids" from fusing back together. We'll see how that goes. I'm not trying to be pessimistic, but I honestly don't expect miracles anymore. Not that I ever really did. I just feel it's easier to expect the worst in these situations so we're not continuously let down.<br />
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Kale is doing great, though. He's crawling everywhere now! He is so freakin' funny, too. He makes silly faces or does silly things on purpose because he knows we'll laugh.<br />
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He is still singing all the time, he claps his hands and taps his feet to the rhythm and beats of songs. He talks all the time and can say a handful of things like "eat", "sissy", "uh-oh", "papa" (for my dad), "lolo/lola" (for my inlaws). He now knows where his hair and his nose are (we're working on the rest!). And Maile helps him "walk" everywhere around the house.<br />
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Speaking of Maile--my mini me turns six next month! So of course I had to take her to Target to pick out things she wants for her birthday.<br />
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I'm so excited. And sad. She's growing up so fast--but she has the sweetest, kindest heart of any little girl I have ever come across. Today she was telling Mike that when she grows up she's going to take care of Kale. How sweet is that? Hopefully one day when she's older she'll realize that we're doing everything that we can so that one day he can take care of himself. But I'm sure he'll appreciate the help and the love that we all have to give!<br />
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She is always doing something for somebody else. She brings home cards and pictures from school that she makes. She makes things for her teacher and for her friends. She's just a super crafty and talented little artist.<br />
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We had some "snow" here a week or two ago. I'd post pics of that, but you can't really tell from the photos I took with my phone that anything is going on. That's how heavy the "snowfall" was, haha. Actually, it was pretty cool to see it fall during the day. It's not something that actually happens much around here. But Maile and I got to see it and drive in it for the five minutes that it lasted. And that was good enough for us. <br />
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Mardi Gras here is a big deal. And Maile and I were able to take part in the parade once again thanks to the PNJ. We rode on the Moms Like Me float (we walked in the parade two years ago for the same group). It really was a lot of fun and while I expected the worst (See?--it's just what I do) it turned out to be a pretty awesome experience--even if it felt like the longest day ever! We both got to hang out with our friends and make a lot of people happy with beads and moon pies. Seriously...people go crazy for this stuff!<br />
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Once I have more time, I'll post some video. I've finally got a decent video application on my iPhone that will let me upload them to Facebook and send them to e-mail addresses so I'm slowly but surely getting them onto the computer. Of course, it'll probably take a good three hours to upload a 30 second video, so I gotta factor in that kind of time, so....<br />
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Yeah. Who knows when those videos will be up.<br />
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I'll try to update on Kale's surgery as soon as I can. In the meantime, try to enjoy the rest of February!kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com4tag:blogger.com,1999:blog-7867999989486561891.post-9356345599074904812010-01-27T20:45:00.000-08:002010-01-27T20:47:01.563-08:00Good stuffMaile got her report card yesterday---and came home with the kindergarten version of Honor Roll! How cool is that? We had some issues the first nine weeks of school due to all of us slacking when it came to learning her sight words. But we busted those out this time around and we are all so proud of her. She got a ribbon, a certificate, a pencil and a free meal from Sonic. I'm so glad she loves school and learning--I really hope it sticks!<br />
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Her sixth birthday is about a month and a half away and I'm already trying to figure out what to do. I've talked to her about it and I think we're going to attempt to put together a small dress-up tea party--girls only. I have some good (and thrifty!) ideas, I just hope I have the time and energy to put them into effect. I'm excited, though. It's important for me to make sure she feels special all the time and to do as much as I can for her. I'm so terrified of her one day looking back with resentment for whatever reason. I never want her to feel like we never did enough for her or thinking that we were not there for her enough. Is that crazy?<br />
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Anyway. <br />
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Kale had his occupational therapy evaluation today and it went really well. The OT he will have is super nice and he warmed up to her pretty quick. She agreed that he has a few things we need to work on and promised that by his second birthday, he'll be diving into his cake (he wanted nothing to do with his first birthday cake)! She's going to help us with all of his feeding issues, help him to feed himself, help him with "messy play" (he does not like to get anything on his hands), help him to transition to a sippy cup and help us with figuring out how to get him cooperating during bathtime (which is a complete nightmare, oh my god...he is STRONG!). Basically any daily activity that is difficult because of his visual impairment or because of setbacks due to surgery, she is going to help us with. I don't know yet when we'll start meeting with her or how often, but I'm looking forward to it. Even though it means he'll have to meet with someone different at least four days a week (he already sees his TVI twice a week and his ITDS once a week), it's okay because he's finally going to be getting the help he needs. And so are we.kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com3tag:blogger.com,1999:blog-7867999989486561891.post-70292374996055216062010-01-26T20:41:00.000-08:002010-01-27T13:11:53.885-08:00When will it end?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.<br />
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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.<br />
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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.<br />
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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 <i>all the way over</i>. 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. <br />
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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. <br />
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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.kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com5tag:blogger.com,1999:blog-7867999989486561891.post-69853174992861942332010-01-21T17:47:00.000-08:002010-01-22T19:50:53.305-08:00Crypto--what?<div style="font-family: Arial,Helvetica,sans-serif;">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.<br />
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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. <br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;">Well, today I finally got her e-mail. Kale has what is called <i>isolated</i> <i>complete</i> bilateral cryptophthalmos, which is, (quoting from an article Dr. Scruggs quoted from) <span style="font-family: Arial,Helvetica,sans-serif; font-size: small;">"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." </span><br />
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<span style="font-size: small;">Because his is not associated with any syndrome (that we know of--at least not with Fraser Syndrome), his crypto is isolated. </span><br />
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<span style="font-size: small;">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). </span><br />
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<span style="font-size: small;">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.</span><br />
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<span style="font-size: small;">How does cryptophthalmos happen? Here's what Dr. Scruggs said: </span><br />
</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">"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)."</span><br />
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<span style="font-size: small;">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<b> bilateral</b> microphthalmia--she's saying his left eye is full-sized (but abnormal), but we've been told that while it <i>appears</i> to be normal in size, it is still microphthalmic. </span><br />
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<span style="font-size: small;">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.<br />
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</span>kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com3tag:blogger.com,1999:blog-7867999989486561891.post-85078009484766336402010-01-06T17:45:00.001-08:002010-01-07T16:13:45.725-08:00It's been a long December......and there's reason to believe that maybe this year will be better than the last.<br /><br />Someone reminded me of that song recently and boy, does it fit.<br /><br />2009 was rough--and so far 2010 isn't looking so hot, either. Another person suggested that we're just getting all the bad parts out of the way now so we can enjoy the rest of the year. I'm not holding my breath on that one, though.<br /><br />Kale's surgery last month really took a toll on us. A week after having his last set of expanders put in, his left eye started to do some real funky stuff. A large crusty scab-like thing covered his entire eye and we had no clue why. We went back and forth with his doctor via telephone and e-mail, sending pictures and trying to figure out what the hell was going on. She had him on antibiotics in case it was an infection (although she didn't think that's what it was) and we just kind of had to sit and wait it out until his next appointment which was this past Monday (this wasn't because his doctor wasn't concerned, but because she was due to go on vacation and it was Christmas time). But the wait was awful. We couldn't let him "cry it out" in his crib like we had been doing because every time he cried, more of his eye would scab. Parts of it would start to fall off, but then once he cried for whatever reason, it would start to form that nastiness again. It was just no fun at all for any of us and Mike and I have been sleep deprived and grumpy (more so than usual, anyway).<br /><br />Anyway. This Monday finally came and went and his doctor wanted to go ahead and schedule him for surgery the following morning. So yesterday morning, she cleaned all the funkiness from his eye and discovered that the expander was basically spitting itself out! It was pushing through his skin rather than through the incision! How awful, huh? My poor little guy has gone through so much crap and this was just the worst. So, Dr. Sruggs removed the implant and luckily his eye wasn't infected at all. There was a bit of skin from his "lid" that wasn't viable but it wasn't enough to require a skin graft (which was a concern). Whew! Instead, she put in a tiny conformer and sewed his eye back up and he looks like his old self again.<br /><br />The part that sucks though is that it looks like we're going to have to start all over with his left eye and the expanders. All this time that the expander was rejecting itself, all the tissue that had been expanded over the last six months moved back into place and so all that space and progress that was made is pretty much gone. His right eye is fine, so I guess that's something. He should be able to start with a conformer in that eye soon.<br /><br />Despite all of this, we did manage to have a good Christmas. Maile was sick during the entire Christmas break, but that didn't keep her from enjoying all of her gifts from family and from Santa. Kale has been loving all his toys--lots of noisy ones, haha. But it's all good. We're a super strong family and we can pretty much take on anything. It may not be easy, but it's possible.<br /><br />I've got more to share, but I'll cut it here for now.<br /><br />Here's hoping 2010 will get better...kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com7tag:blogger.com,1999:blog-7867999989486561891.post-49671658420351013412009-12-08T20:59:00.000-08:002009-12-08T21:28:54.850-08:00RecapTomorrow we leave for Birmingham--Kale is having his last set of hydrogel expanders put in. Woohoo! After this last pair come out, he'll hopefully be fitted with conformers that will actually stay put and keep his eyelids from healing back together.<br /><br />So, just in case anyone is coming in on this with no clue what I'm even talking about, here's a recap:<br /><br />Kale was born with bilateral microphthalmia (a.k.a. "small eyes"), which means his eyes didn't fully develop while he was in the womb. His is a severe case and he is blind, with some light perception in his left eye. Every case is different and Kale is (knock on wood) so far "Okay"--nothing else seems to be going on with him.<br /><br />The reason for surgery? His eyelids were fused shut and had to be surgically opened (surgery #1) when he was six months old. The doctors discovered that his left eye (a.k.a. "globe") is actually a decent size but is all sclera (the white part of the eyeball) and mostly covered with tissue. His right globe is very tiny and very far back in the socket. In order for his face to grow proportionately and to avoid any potential future ENT issues, Kale was fitted with these little plastic things called conformers. These are put in place to promote eye socket growth. Well, his left one didn't last more than a week before coming out (and refusing to go back in at any size) because his lids aren't formed very well. The only other option that we felt necessary was to surgically implant expanders (surgeries #2 and 3). There are three different sizes and they expand by the natural fluids in the eye. Once in, his lids are sewn shut. Which means that once he is wearing the conformers, they will have a very large and wide stem sticking out to keep the lids separated so they can heal. Eventually, the conformers with be stemless and actually be painted to look like an actual eyeball.<br /><br />It's been a long year going through all of this, but Kale is a champ. We're hoping that he only has two more surgeries left (this one on Thursday and one after to take them out and put in conformers) but it is kind of hard to tell right now. It all depends on how his lids hold up through everything.<br /><br />Anyway. That's it in a nutshell in terms of his condition and what his surgeries are all about. He has handled everything so well and we just hope he continues to. Keep him in your thoughts and keep your fingers crossed that there will not be too many surgeries in 2010 for our little man.kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com0tag:blogger.com,1999:blog-7867999989486561891.post-79489078646955773572009-11-26T16:38:00.000-08:002009-11-26T17:22:40.975-08:00Happy Fat Pants DayI'm finally not so uncomfortable right now so I figured I'd get on here, give some shout-outs and then have some inner dialog with myself on whether I should attempt to eat anything else today.<br /><br /><br />What am I thankful for? I don't have enough time in the day to go over everything. But I will say that I'm thankful for my family (duh). But not just the obvious members. <span style="font-style: italic;">All </span>of them. Whether they're a part of my life or not. Because without them, I would never have learned a thing. Whether it is how to be stronger, how to move on or how to forgive. I may not be all the way there on that last part, but I'm getting there. And for that, I'm thankful.<br /><br /><br />I love my life. I love my friends. I may not have the best relationships with everyone whether it's my fault, theirs or both. But I love them all. Whether we're close or just friends who hang out occasionally but don't quite know enough about each other. I wouldn't have you in my life if I didn't think you were worth it, and I hope the feeling is mutual. Some people I have reconnected with this year. And while I do tread lightly and I do keep some walls up out of fear, I'm thankful for second chances.<br /><br /><br />I have been trying my best over the past couple of months to be a better person. To not be so negative. It's a hard thing to do when I've spent the last 32 years being nothing but. People who once drove me nuts with their "glass is half full" mentality are now people I look forward to being around. I'm not saying I am now going to be annoyingly chipper, I'm just saying that my glass won't <span style="font-style: italic;">always</span> be half empty.<br /><br />So, thank you to everyone in my life. Good, bad and in between.<br /><br />Now, if you don't mind--I have an awesome little family to get back to.<br /><br />Gobble, gobble, yo.kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com0tag:blogger.com,1999:blog-7867999989486561891.post-75744483234120976322009-11-24T20:05:00.000-08:002009-11-24T21:08:31.914-08:00Where to startUgh.<br /><br />I know I've been slacking on the postings--it just seems like every time I sit down to type something up, I have to stop to do something else. And by the time I can get back to it, days have gone by and there's so much more to cover.<br /><br />So instead of going into waaay too much detail that no one cares about anyway, I'll make it short and sweet.<br /><br />Kale's TVI (teacher of visual impairment, or VIT--visual impairment teacher) started visiting a couple of weeks ago. She's great, she's teaching me braille and thinks Kale is the bees knees. Yesterday an O&M (orientation and mobility) teacher came by to meet Kale and to see how he is "traveling-wise". She was very impressed with him and how he moves around, but it probably won't be another six months or so before she starts to actually work with him. She's the one who will introduce him to mobility devices including a cane. Ms. Powers (Kale's TVI) said she will keep the O&M teacher updated on his crawling and walking and maybe he'll get to work with her sooner. He's pulling up on <span style="font-style: italic;">everything</span> now--the couch, the recliner, the table. And he loves it. If he falls, he gets right back up and does it all over again. He'll walk around everything he pulls up on, too. He even prefers to stand (assisted, of course) in the tub now--which is just <span style="font-style: italic;">oh, so fun</span> for me. Not difficult<span style="font-style: italic;"> at all</span> (That's not drenched in sarcasm at all, is it?).<br /><br />Kale started crawling a lot the other day. He did it around six different times. Yesterday he did it twice, once while the teachers were here! That made my day because it seems like I'm the only one who ever sees Kale do it--finally someone else saw it and I don't have to worry that people think I'm making things up (not like I really think they think that...).<br /><br />Formula is finally a thing of the past! Kale is finally drinking milk. Whew! Now if only I could get him to drink from a sippy cup instead of a bottle. And to drink water and juice. He is eating chunkier foods and I can give him these little yogurt bites and puff snacks. Before I was having to break them up into little pieces but today he took them all in one bite (thanks to my mom). I'm hoping he'll eventually learn to take them in his own fingers and feed them to himself. We'll see. So many things to do, don't want to overwhelm him.<br /><br />Right now our biggest issue/problem is getting Kale to sleep on his own. In his crib. There was a time before he started having surgery back in April when he slept through the night and it was pure bliss. But since that first surgery, it's been a battle. Most of the time him and daddy are on the couch and that's just no way for either of them to get any rest. We've been attempting the whole crying-it-out and that didn't last too long. But there are safety issues that have us trying to suck it up and get it done. Right this very moment, Kale is in his crib screaming his head off and has been for about 45 minutes. Tonight we're trying out the <a href="http://www.sleep-baby-sleep.com/ferber-method.htm">Ferber Method</a>. So far? It sucks. We find ourselves asking if it's worth it right now. He's going to be having surgery again in a couple of weeks and we'll just have to start all over again.<br /><br />I know some people think it's horrible and we should just hold him and give in or whatever. But we have our reasons for needing to do this. Every family is different and ours is no exception.<br /><br />Maile is doing phenomenal. She's learning to read which is such an awesome thing to watch. Reading has always been my "thing" so to see her do it and enjoy it brings me so much joy! She's always loved books but now she goes through and points out all the words she knows and tries to sound out the ones she doesn't. Today she showed me a list of words she was trying to spell just for the heck of it and one of the words she was trying to spell was "dolphin". She spelled it "dofin". How awesome is that? A few weeks ago, the movie "Akeelah and the Bee" was on and we recorded it (I personally love the movie and I wanted Mike to see it--he ended up loving it, too). I swear for the next two days, that's all she wanted to watch! And she kept pretending to be in her own spelling bee, which was the cutest thing.<br /><br />She's also quite the artist and I'm hoping she sticks with it. She really blows us away with some of the stuff she draws. I was big into drawing (and quite good at it) when I was a kid but stopped for whatever reason. I just hope she doesn't!<br /><br />Aiight.<br /><br />I think I covered most of everything. I'm sure I'll remember something else and come back and edit it in. But right now I have to go check on Kale.<br /><br />So much for short and sweet, huh?<br /><br /><br /><br />Hope you all have a wonderful, safe and Happy Thanksgiving. I'm sure I'll be back sometime around Thursday to bore everyone with all that I am thankful for.<br /><br />Until then...kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com2tag:blogger.com,1999:blog-7867999989486561891.post-57257530119279804532009-10-31T13:23:00.001-07:002009-10-31T13:25:01.672-07:00Happy Halloween!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_SpaXSAGnaFw/SuydAm0ug4I/AAAAAAAAAVQ/HCmneqGvLh0/s1600-h/pumpkins.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 200px; height: 150px;" src="http://3.bp.blogspot.com/_SpaXSAGnaFw/SuydAm0ug4I/AAAAAAAAAVQ/HCmneqGvLh0/s200/pumpkins.jpg" alt="" id="BLOGGER_PHOTO_ID_5398862687057642370" border="0" /></a><br />Hope everyone has a safe and Happy Halloween!kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com1tag:blogger.com,1999:blog-7867999989486561891.post-6656609879006461972009-10-27T17:33:00.000-07:002009-10-27T17:44:32.220-07:00FinallyKale has a Visual Impairment Teacher (VIT)!!!<br /><br />Today was the staffing meeting for Kale and it went very well. It was a bit overwhelming--there were eight other people there along with Kale and me. But the end result was all I've been waiting for since January.<br /><br />I don't know yet when his VIT visits will start, but I'm hoping soon. She will come here to the house for thirty minutes twice a week. I've met her before and she seems to know her stuff. She should--she's been doing this for 35 years!<br /><br />Anyway, I'm looking forward to learning some new things from someone who is somewhat of an expert when it comes to the visually impaired, rather than just trying to figure it out myself (sometimes unsuccessfully).<br /><br />So, yay! The ball is rolling...kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com2tag:blogger.com,1999:blog-7867999989486561891.post-60083842472590978382009-10-25T20:25:00.000-07:002009-10-25T20:46:15.495-07:00Breakthrough (sorta)!Yesterday my mom and dad watched Kale for me for a few hours and I gave my mom the "go ahead" on trying to get him to eat more than just baby food. I think I've just been too scared. The few times I've tried to give him stage 3 foods (the really chunky kinds), he would gag over and over again and I would freak out.<br /><br />When I got back to my parents house, my mom told me she was able to get him to eat. And eat he did! Homeboy had a feast! She put some macaroni and a sweet potato in a small food processor but still left chunks all in it. She said he gagged a couple of times, but eventually stopped and was able to just eat it all. And the pudding. And the yogurt melt thingies (although we have to break them up into smaller pieces, but still).<br /><br />So today I broke out the stage 3 Chicken Noodle jar that I've had stored away for when I felt Kale was finally ready for it...and he ate it! No problem! Well, except for the part where he refused to swallow any of the carrot bits in it. He would just keep them in the front of his mouth and I would have to take them out with my finger. I think it's safe to say he's about as fond of carrots as I am.<br /><br />I'm <span class="blsp-spelling-error" id="SPELLING_ERROR_0">sooo</span> glad I had my mom do my dirty work for me! It never fails--if ever I have something I'm too scared to do, I just call on her. When Kale had his first surgery and had his eyes all covered in gauze and tape that wouldn't come off for anything, I called on her to be the one to get it off of him. And she did.<br /><br />Anyway.<br /><br />Today we took the kids to the pumpkin patch. We were going to do it sooner but then everyone got sick. But today was a beautiful day and we went to the one we always go to. Thankfully, they weren't completely out of pumpkins. <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Maile</span> picked one out for her and picked a tiny one out for Kale. And Mike and I picked one out for us. Tomorrow we're going to carve ours and let <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Maile</span> decide what she wants to do with hers. We have these pumpkin face things you can stick in it--kinda like the Mr. Potato Head stuff. But they're <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Halloweeny</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Maile</span> also has a princess set...so we'll just have to wait and see what she wants to do I guess. I'll post pictures of our pumpkins once we're done with them. Until then, here are the ones from today--Enjoy!<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_SpaXSAGnaFw/SuUZxMKgwhI/AAAAAAAAAUo/r6EoaO7LPqQ/s1600-h/DSC09940.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 200px; height: 150px;" src="http://4.bp.blogspot.com/_SpaXSAGnaFw/SuUZxMKgwhI/AAAAAAAAAUo/r6EoaO7LPqQ/s200/DSC09940.JPG" alt="" id="BLOGGER_PHOTO_ID_5396748061343007250" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_SpaXSAGnaFw/SuUZxaK2AII/AAAAAAAAAUw/4-N9WVx389M/s1600-h/DSC09942+%282%29.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 200px; height: 196px;" src="http://3.bp.blogspot.com/_SpaXSAGnaFw/SuUZxaK2AII/AAAAAAAAAUw/4-N9WVx389M/s200/DSC09942+%282%29.JPG" alt="" id="BLOGGER_PHOTO_ID_5396748065102495874" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_SpaXSAGnaFw/SuUZxlfWRoI/AAAAAAAAAU4/tTfl-8KdJL8/s1600-h/DSC09943.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 150px; height: 200px;" src="http://4.bp.blogspot.com/_SpaXSAGnaFw/SuUZxlfWRoI/AAAAAAAAAU4/tTfl-8KdJL8/s200/DSC09943.JPG" alt="" id="BLOGGER_PHOTO_ID_5396748068141287042" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_SpaXSAGnaFw/SuUZx0rzVYI/AAAAAAAAAVA/VyAG5M7ETOY/s1600-h/DSC09945.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 150px; height: 200px;" src="http://2.bp.blogspot.com/_SpaXSAGnaFw/SuUZx0rzVYI/AAAAAAAAAVA/VyAG5M7ETOY/s200/DSC09945.JPG" alt="" id="BLOGGER_PHOTO_ID_5396748072220054914" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_SpaXSAGnaFw/SuUZyME_-6I/AAAAAAAAAVI/1W0KMhqu4xc/s1600-h/DSC09946.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 150px; height: 200px;" src="http://3.bp.blogspot.com/_SpaXSAGnaFw/SuUZyME_-6I/AAAAAAAAAVI/1W0KMhqu4xc/s200/DSC09946.JPG" alt="" id="BLOGGER_PHOTO_ID_5396748078499756962" border="0" /></a>kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com2tag:blogger.com,1999:blog-7867999989486561891.post-66962383720247300732009-10-21T15:55:00.001-07:002009-10-21T22:06:53.523-07:00Time to start baby-proofing--for real!Kale crawled the other day!<br /><br />Of course, he won't do it anymore now that I <span style="font-style: italic;">know</span> he can and <span style="font-style: italic;">want</span> him, too. But at least I know that he can. Also, he's been doing everything he can to stand up on his own and with some help initiating it, he'll pull up on the chair and couch. It's so friggin' funny to watch him, too. As soon as he's pulled himself up, he holds on with one hand and then starts to laugh or has this big goofy grin on his face. Sometimes he falls, but he'll pull himself back up again. Sometimes he'll just turn himself around and then lean on whatever it is he pulled himself up on--but he'll still be standing. He's just so damn cute.<br /><br />You may be asking yourself why is this such a big deal to us. I mean, aside from the fact that it's exciting for any parent to watch this happen with their baby. Well, visually impaired babies tend to be delayed when it comes to things like crawling and walking. I have worked and worked with Kale to do these things and finally just kind of stopped pushing it so much. I figured he'll do it when he's ready. And sure enough--he proved he knew what to do all along! And he's figuring out the whole standing thing on his own--because<span style="font-style: italic;"> he</span> wants to. Not because I'm drilling it in his head every minute of the every day.<br /><br />Now if only I could get him off the bottle and on to a sippy cup. And drinking milk. And eating something other than baby food...(And believe me, I've tried <span style="font-style: italic;">every</span> trick).<br /><br />All I know is help from a visual impairment teacher cannot come quick enough. We have a staffing meeting next week with a bunch of people and a VI teacher and I'm crossing my fingers we won't have to wait much longer after that to get the ball rolling. Kale will be thirteen months old tomorrow--I wish we'd had all of this taken care of at least six months ago. Maybe some of these road bumps we're hitting could have been avoided. It's not their fault though. Because there was the question regarding whether he had hearing loss or not, we had to wait until all of that was taken care of. We didn't finally get our answer until the end of March. And I think it was April or May before I ever was able to get back in touch with the people I needed to regarding this situation. And then it was June and VI teachers were out for the summer. Luckily, we were able to get back on track once school started back up and it's just been a meeting here, a meeting there. And finally this meeting next week.<br /><br />Cross your fingers that it won't be much longer!kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com3tag:blogger.com,1999:blog-7867999989486561891.post-53323417986092948692009-10-18T21:42:00.000-07:002009-10-18T22:09:05.017-07:00And this little piggy....Okay, okay. Lame title, I know. Especially considering that the swine flu is no longer being called the swine flu, but N1H1 (are you happy now, Christie???).<br /><br />So the past seven days have been fun. Last Sunday, Maile started running a fever and coughing. Monday I kept her home from school and I started coughing and feeling a little under the weather. I called her and Kale's pediatrician's office and spoke to the nurse (who knows me well now) and she said it sounded like Maile had the flu and for me to just keep an eye on her fever and continue doing what I was already doing. Of course, if Kale started to run a fever or show any other symptoms, I needed to call and have him seen (their pediatrician is just trying to be super cautious with him, I guess). Monday night? I'm in the ER with Maile whose fever spiked to 104. We spent almost four hours in the waiting area along with about fifty other people. And I swear, we were all there for the <span style="font-style: italic;">same thing</span>. I eventually just took Maile home (her fever had gone down while we were there) and took care of her myself.<br /><br />Tuesday I was still feeling bad and my mom came over to help out with the kids. Maile was home again and Kale was starting to cough a little bit. I talked to Mike on the phone while he was at work and he was starting to feel sick with a cough and sniffles.<br /><br />By Wednesday, Kale was running a fever, Maile was still home from school with the fever that refused to go away and still had that nasty cough. I called the doctor and had to take Kale in. Kathy (my mother-in-law) went with me (which proved to be a gift from Heaven later on as I endured a Walmart trip from Hell). Kale had his nose swabbed and about fifteen minutes later his doctor came in and said Kale had the swine flu. And that Maile probably had it, too but if it's not treated within the first 48 hours then it has to just run its course (which was totally not my fault--I had called the doctor around three times during the week out of concern for her!!!). I called Mike to let him know because his work is super crazy about anyone getting this virus.<br /><br />So Thursday--His work had him take the day off to get checked and sure enough---after two doctor visits (one questionable regular doctor and a surprisingly speedy ER visit for him and Maile) he tested positive for it, Maile with bronchitis. So Maile missed an entire week of school and now Mike has to miss an entire week of work.<br /><br />Luckily, Kale was treated early and he's been doing great. Maile's doing better and looking forward to going back to school and doing all the things I wouldn't let her do all week for fear of getting even more sick or getting someone else sick. And Mike is feeling much better today than he has been the past four days (I think got the worst of it). Everyone is getting and feeling better and tomorrow is a new day.<br /><br />And me? I'm looking forward to catching up on all of last weeks shows that are stored on my DVR ;)kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com4tag:blogger.com,1999:blog-7867999989486561891.post-66955252215013209372009-09-22T07:07:00.000-07:002014-10-15T13:15:47.583-07:00One!<a href="http://4.bp.blogspot.com/_SpaXSAGnaFw/SrjeonPrw4I/AAAAAAAAAUg/CwPlfZwVw1Y/s1600-h/DSC09908.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="http://4.bp.blogspot.com/_SpaXSAGnaFw/SrjeonPrw4I/AAAAAAAAAUg/CwPlfZwVw1Y/s200/DSC09908.JPG" id="BLOGGER_PHOTO_ID_5384298143832327042" style="cursor: pointer; display: block; height: 150px; margin: 0px auto 10px; text-align: center; width: 200px;" /></a><br />
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My little man is one today!<br />
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I cannot believe the year has flown by as fast as it did. A few months ago, I got a message on Facebook from an old Gtmo friend of mine. She was telling me that her hairdresser was telling her about a friend of hers who was pregnant with a baby girl and that they already knew their baby girl has bilateral microphthalmia. So my friend got us in touch with each other and we've been in contact ever since via Facebook. Her daughter was born a week and a half ago and she is just precious. When she started to post pictures of her beautiful baby girl on FB--all the old feelings crept back up from when Kale was born. It's been a year, but all of the feelings from then are still fresh. And I still think back to that day and that week and wonder how any of us got through it all.<br />
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But here we are. One year later. Numerous tests, countless doctor's appointments and four surgeries later. A year's worth of tears--from frustration and from joy. One year of so many amazing moments from watching a big sister love her baby brother so much it brings her to tears. A year of watching our son explore everything around him, not wanting to miss out on anything. A year of watching a father show so much love and pride for his son and for his daughter.<br />
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It hasn't been an easy year, but I wouldn't change a thing when I look back on it all. It is true--that whole "whatever doesn't kill you only makes you stronger" saying. With our family and friends by our sides, we've gotten through some really tough times. And I know we'll be able to get through whatever else is thrown our way.<br />
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I am blessed. <span style="font-style: italic;">We</span> are blessed. Somebody is watching over us--I don't know who. But I thank them.<br />
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Happy 1st Birthday, my beautiful Kale Michael.<br />
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<a href="http://4.bp.blogspot.com/_SpaXSAGnaFw/SrjenVJINzI/AAAAAAAAAUI/5NafwTVal2Y/s1600-h/DSC09865.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="http://4.bp.blogspot.com/_SpaXSAGnaFw/SrjenVJINzI/AAAAAAAAAUI/5NafwTVal2Y/s200/DSC09865.JPG" id="BLOGGER_PHOTO_ID_5384298121793124146" style="cursor: pointer; display: block; height: 150px; margin: 0px auto 10px; text-align: center; width: 200px;" /></a>kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com5tag:blogger.com,1999:blog-7867999989486561891.post-22063143490005984142009-09-02T09:05:00.000-07:002009-09-02T09:17:08.895-07:003We're leaving in a little bit for Birmingham--Kale is having his third surgery tomorrow morning. It never gets easier, but I do seem to freak out a little less each time. Even if that means I have to avoid feeling any actual <span style="font-style: italic;">feelings</span>. Way to be optimistic, huh? Eh.<br /><br /><br />Not much else to say. Just hoping that in the long run, this isn't all for naught.kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com2tag:blogger.com,1999:blog-7867999989486561891.post-74313522514006809172009-08-26T19:45:00.000-07:002009-08-26T20:03:23.575-07:00Well, I'm officially a mother of a school aged child.<br /><br />Maile started kindergarten on Monday and surprisingly no tears were shed by any of us. I'm convinced that I'm just numb from everything going on right now. I'll probably have a very late break down by the time she starts first grade.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_SpaXSAGnaFw/SpX1TsiqyBI/AAAAAAAAASA/sHkYNy8NI1U/s1600-h/DSC09788.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 150px; height: 200px;" src="http://4.bp.blogspot.com/_SpaXSAGnaFw/SpX1TsiqyBI/AAAAAAAAASA/sHkYNy8NI1U/s200/DSC09788.JPG" alt="" id="BLOGGER_PHOTO_ID_5374471449059444754" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_SpaXSAGnaFw/SpX1UINMNiI/AAAAAAAAASI/Ows0TPUjMUI/s1600-h/DSC09790.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 150px; height: 200px;" src="http://4.bp.blogspot.com/_SpaXSAGnaFw/SpX1UINMNiI/AAAAAAAAASI/Ows0TPUjMUI/s200/DSC09790.JPG" alt="" id="BLOGGER_PHOTO_ID_5374471456485553698" border="0" /></a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_SpaXSAGnaFw/SpX1UufSTbI/AAAAAAAAASQ/blxWwYU21jI/s1600-h/DSC09795.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 200px; height: 150px;" src="http://4.bp.blogspot.com/_SpaXSAGnaFw/SpX1UufSTbI/AAAAAAAAASQ/blxWwYU21jI/s200/DSC09795.JPG" alt="" id="BLOGGER_PHOTO_ID_5374471466761997746" border="0" /></a><br /><br /><br />I think the only thing that really bothers me is that I don't know what she's doing for seven hours straight. I'm so used to her being around all day, asking me for yet another snack or asking me to play with her in her room. Or being all up in Kale's business. Or asking me to snuggle and cuddle with her. And now? She's somewhere else. Giving someone else all of her attention. It kind of sucks, man! And it's gonna be like this for the next twelve years???<br /><br />Anyway--She really likes it so far. I mean, it's only been three days, but she hasn't begged me to stay home or anything. So that's good, right? Today she had to walk into the building and to her classroom by herself. Tomorrow she's gonna have to walk a little more by herself. It seems so much scarier to me than it is to her. I keep thinking something is going to go wrong. Like she'll lose her lunch money or forget where she put it. Or she'll get lost. Or she won't make any friends. But then I have to remind myself that she's a smart girl. And she's going to be just fine. And that she's still going to ask me for yet another snack when she comes home, she's still going to ask me to play with her in her room, she's still going to be all up in Kale's business and she's still going to ask me to snuggle and cuddle with her. I'm just now going to look forward to those moments a little more than I did before.kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com1tag:blogger.com,1999:blog-7867999989486561891.post-23484162611015834922009-08-18T16:58:00.000-07:002009-08-18T19:31:43.750-07:00Last days of summerI have no clue where the time went, but somehow the summer flew right by me! I feel like I was just writing about all the cool things I wanted to do this summer and now I'm preparing for Maile to start kindergarten next week! How did this happen???<br /><br />I think I'm more excited than Maile is, but I guess that's to be expected. She has that initial fear of the unknown, but I'm hoping she comes home from her first day eager to go back the next day rather than begging to never have to go again.<br /><br />We didn't get to do all the things I had planned for the summer, but we did do a lot. Maile even got to have her very first sleepover (thank you again, Mike!). I'm pretty pleased with how our summer went and I hope Maile is, too.<br /><br />Kale has been doing so much better with everything since my last post. I'm just gonna assume we were both having a<span style="font-style: italic;"> really</span> bad week. And that he was teething hardcore, for real this time .He even has his first bottom tooth to prove it. He's eating great again, sitting up and playing all the time--pretty much everything he was doing before my last post. He's also become quite the master at mimicking. He'll say "up", "uh-oh", "dad-dy", and he'll whisper when one of us does. When we sing Pat-a-cake he claps his hands--he'll also do that if you say "Yay!" It's hard to believe we are going to be celebrating his first birthday next month!<br /><br />This past weekend we went to visit some family and we had such a great time. Kale got to go "swimming" and Maile just had a blast all around hanging with her cousins (as did I).<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_SpaXSAGnaFw/SotFV-trrMI/AAAAAAAAAR4/LE1dG4CgYXM/s1600-h/DSC09763.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 200px; height: 150px;" src="http://4.bp.blogspot.com/_SpaXSAGnaFw/SotFV-trrMI/AAAAAAAAAR4/LE1dG4CgYXM/s200/DSC09763.JPG" alt="" id="BLOGGER_PHOTO_ID_5371463224483622082" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_SpaXSAGnaFw/SotFVuij5vI/AAAAAAAAARw/RWkfnZyE53k/s1600-h/DSC09759.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 150px; height: 200px;" src="http://3.bp.blogspot.com/_SpaXSAGnaFw/SotFVuij5vI/AAAAAAAAARw/RWkfnZyE53k/s200/DSC09759.JPG" alt="" id="BLOGGER_PHOTO_ID_5371463220142008050" border="0" /></a><br /><br />Times have been kind of rough around here with certain family members not doing so well and whatnot, but in the end it's family that keeps us all together. We may not all get along as well as we'd like to. We may all lead completely different lives. And most of us don't agree on much. But we're family and need to be there for each other as much as possible. If not in person, than in thought or prayer (if that's your thing). We just need to always be thankful for what we have and who we have in our lives. I know I am.kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.com1