Time to start baby-proofing--for real!

Kale crawled the other day!

Of course, he won't do it anymore now that I know he can and want 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.

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 he wants to. Not because I'm drilling it in his head every minute of the every day.

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 every trick).

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.

Cross your fingers that it won't be much longer!

And 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???).

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 same thing. I eventually just took Maile home (her fever had gone down while we were there) and took care of her myself.

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.

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.

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.

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.

And me? I'm looking forward to catching up on all of last weeks shows that are stored on my DVR ;)

One!

My little man is one today!

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.

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.

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.

I am blessed. We are blessed. Somebody is watching over us--I don't know who. But I thank them.

Happy 1st Birthday, my beautiful Kale Michael.

3

We'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 feelings. Way to be optimistic, huh? Eh.


Not much else to say. Just hoping that in the long run, this isn't all for naught.

Well, I'm officially a mother of a school aged child.

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.







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???

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.

Last days of summer

I 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???

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.

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.

Kale has been doing so much better with everything since my last post. I'm just gonna assume we were both having a really 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!

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).




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.

Not always coming up roses

Looking back at a lot of (or most of) my posts, I notice that I'm always writing about how awesome things are. Which isn't really like me (if you know me, you know what I mean). I don't want to come off as fake or like life is oh so perfect. It's not. It's hard work. I just don't think it's fair to only go on and on about how great things are. Because while things are great for the most part, there are some not so great things going on around here as well. I want to be honest with this blog and also help others out who may be in a similar situation. And if I am not being 100% honest in how our life is dealing with our sons condition then how is that helping anyone?

I have my days where things are pretty great and things run smoothly. And then--there are days where balling myself up into the fetal position and rocking back and forth in the nearest corner of the room sounds like heaven.

This morning was a rough one. I think Kale is finally really teething. As in, teeth should actually be coming in. He's 10 months old and I feel like the two front bottom teeth have been just sitting there teasing us--but now? They mean business. And Kale isn't having it.

Not only is the teething an issue right now, but so is feeding Kale solids. I have little cues I give him to let him know when I have the spoon ready for him--I rub his cheek with the pinky finger that's on the hand that is holding the spoon. If that makes sense. I also give him verbal cues. And sometimes it's a messy affair, but babies are messy anyway, so no biggie. Well now Kale puts his fingers and hands into his mouth as soon as I move the spoon away. Then he rubs them all around and on his eyelids--which are still stitched closed. Which in turn sucks. Because the last thing I need is for him to get some sort of infection in his eye. So the entire time I'm feeding him, I'm busy moving his hands away, he's busy fighting me, I'm busy wiping his hands and his eyes which just makes him mad, he starts to fuss and cry and then he refuses to eat anymore.

Needless to say, I'm really starting to dread breakfast, lunch and dinner time with him.

This morning because he was so fussy due to what I'm assuming was the teething, I couldn't even feed him breakfast until almost eleven o'clock! He usually eats at eight. I was so stressed, he was so stressed and soon we were both in tears. Ugh. I'm such a wimp.

A couple of weeks ago, a physical therapist came by with Kale's Early Steps Intervention teacher to check on how things are going with him. The last time she saw him was December 1st so she had a lot to catch up on with him. She showed me a few transitional steps for him to work on--from crawling position to sitting, sitting to crawling position--that sort of thing. The visit was good, though. She said he looked good and she thought that he had made a lot of progress over the past six months and she just wanted us to make sure we keep encouraging him to crawl, stand and walk and to be able to move from each position on his own.

He's been sitting up so great for long periods of time, too. Until recently. I am so scared he's regressing or is going to. Usually it was no big deal for him to let you sit him down on the floor. He'd be content playing with whatever you gave him and just sit there. Now if I try to sit him down, he'll refuse to bend his knees or go straight to lying on his back. It's kind of frustrating. But I keep messing with him until he does it. Sometimes he gets really mad, but I know he needs to do it and so I work with him until he does it. Other times, he's fine.

I just get so scared that all this progress he's made will all of a sudden come to a stop. I doubt that will happen, but I still have that fear. I'm the one who is home with him all the time so it's up to me to make sure that all of these goals are being met with him. And yet, he's still not crawling. And while I know that it's very common among blind babies and blind children to crawl and walk late, there are still people in my life who tend to make me feel like it's my fault. Like I'm not doing enough for him. Or I'm not doing my job. And no matter what information I give those people to back it up, it just doesn't matter. I'm still the one at fault.

Anyway, I guess I just wanted to share how some things we're dealing with in our everyday life are kind of stressful. It's not all fluffy clouds and butterflies. Sometimes it's rain clouds and mosquitoes and not an umbrella or citronella candle in sight.