Tuesday, August 31, 2010

Nearly that time again...

You may remember my blog post from LAST year about September being Craniofacial Acceptance Month. Maybe you weren't yet reading my blog at that point. If you weren't or you want a refresher you can head here and read up.

Miss Sunshine's cleft palate is only one of MANY craniofacial defects. While cleft lip and cleft palate are certainly the most common, (in fact, they are one of the most common birth defects PERIOD, occuring in roughly 1 in every 500 births) they are by no means the only. All of these defects affect a child's face and head. Most of them will endure numerous surgeries in attempts to correct problems that may arise from the defects, and many of them will have visible scarring or abnormalities long after surgery is completed.

The time to educate ourselves about these things is now. More than ever I have come to realize that you just truly never know what can happen. Miss Sunshine's cleft certainly threw us for a considerable loop as we had no prior family history and no indications on any of the (many) ultrasounds I had during my pregnancy that she had a defect. (And again, a post for another time on how I hate that term...) These things just happen. Doctors don't know why, parents don't know why. Only God (or whatever you happen to believe in) knows why our children are born the way they are, be they "normal" or not. It certainly doesn't make them any less of a person or less important or just less. If anything, I think it makes them MORE. The bonds that are developed when you go through surgery with a child are so much stronger than I ever imagined they could be.

I can tell you that if we had it to do over, I don't think we'd change a thing about Miss Sunshine being born with a cleft palate. Granted, we certainly wouldn't want her to have to endure the pain of surgery like she has, but beyond that, I don't know that we'd change it. This whole experience has made us stronger as people, stronger as parents, stronger as a couple, and most importantly, stronger as a family. It doesn't get much better than that.

Wednesday, August 25, 2010

More Randomness

Miss Sunshine had a WONDERFUL evaluation with her speech therapist on Tuesday. Really, I was so happy with what she said I could have cried. Her therapist came all prepared to start working on all those areas we had been so concerned about at her last visit. And I will have you know that she didn't do ANY of it - because Miss Sunshine had already surpassed anything she was going to work on with her! Music to my ears, literally. So we have a new game plan. We are to start working on phrases with her. Getting her to combine words she already says into phrases.

And Miss Sunshine randomly started saying "Elmo" today. Since we don't have television in our home, I don't know where exactly she learned about Elmo, but she sure the heck knows who he is and knows his name! She is picking things up so quickly these days. I sat down to list as many of her words as I could before the speech therapist came so I could show her where we were at - and she has over 60 words that she says clearly or at least understandably! A pretty vast improvement, considering last month she had roughly 13 understandable words.

Speaking of television (nice segue, no?), I find I am kind of missing it lately. Since Monster Boy is in school and Miss Sunshine takes a three hour or so nap in the afternoons, once I finish up my chore for the day, I find myself at a loss of what to do, and think to myself that at that point it would be nice to have TV so I could catch up on my shows... but until things get on more solid footing, we'll have to settle for watching DVD's already in our possession... It's okay though, because I know that we really don't need TV, and honestly, up until Monster Boy started school, I haven't even missed it!

And speaking of school - Monster Boy is doing great so far! I am so very proud of how well he is doing in school. Now, if only I could get him to do so well at HOME. I know he is tired, which is the majority of the problem. Between getting up so early for school, having a full day of activity at school, and then three days a week coming with me to work where he essentially runs non-stop for 3-4 hours, he HAS to be exhausted. If only I could get him to go to bed earlier. The problem is, he goes to bed at 8 now. If I put him to bed any earlier, with my work schedule, he doesn't really have time to eat dinner! We will have to figure something out. By the weekend, I am sure he will crash hardcore. And this is only the first full week of school! And soccer starts next week! Yipes. I am going to have one very tired little boy on my hands. We will have to figure something out. I don't know what, yet, but something.

Work is going well. I'm finally starting to settle in and am not quite so exhausted when I get home. Watching upwards of 40 kids at a time can be rather exhausting, even when there is four adults there to share the load! Those kids are LOUD! And of course, Monster Boy is always right in the thick of it all. Miss Sunshine has also developed quite the clingy pattern of behavior, but only when I am IN the daycare area. If I take her there while I work out, she runs and plays. And usually while I am working, she'll run and play periodically, until she remembers I am there, and then she wants me to hold her. I know she will get past this - sharing Mommy is still very new to her, and for the most part she does very well. But every once in a while... This too shall pass.

I shall save more of the randomness for another post (because I just know how much you all love to hear me ramble on about things that really don't matter to you! It's why you read my blog, right?)

Sunday, August 22, 2010

School Daze


Monster Boy started Kindergarten last week. (And yes, I had intended to write a post ON his first day of school. Unfortunately, that, like so much of my life, got left behind... so I write it now. Oh well. At least I am writing it!)


How in the heck did THAT happen?




When did my baby boy get big enough to go to SCHOOL? Like, all day, eight hours a day, five days a week, school?




I'm not ready for him to be big enough for school yet.



On the other hand, I am SOOOOO ready for him to GO to school.




Makes no sense, does it? But see, the thing is, when he is at school, my day suddenly becomes much more free. Instead of begging him to pick up his messes, chasing around after two kids, keeping him from annoying Miss Sunshine or Miss Sunshine from annoying him, picking up a room only to have it trashed by the kids 30 seconds later - I am only dealing with one component of that equation. And she's a lot less destructive than he is at this point.




But I still miss him while he is gone all day.




And am glad to see him when I pick him up - even if he is lagging 20 feet behind the rest of his class... (That's him, leagues behind the other kids. Solidly bringing up the rear.)




And even if he has to stop to give his girl friend (note the space - she is a friend who is a girl, NOT a girl friend) a hug since she is in the OTHER Kindergarten class so he only sees her at lunch and after school... (and I missed the hug - it was the first day and they were both a bit cranky - hugging was NOT going to happen in front of the camera).




And I am still trying to figure out how he got SOOO big. (This photo was taken in the parking lot, BEFORE we left the school - he rides in the backseat in a high backed booster - for all my carseat mommies out there!)

Tuesday, August 17, 2010

I'm tired again.

Seems like a running theme in my posts these days! Although today I have a legitimate excuse. I am tired in many different ways.

We (Monster Boy and I) woke up bright and early this morning - getting ourselves used to being up for school which starts on Thursday! So, I was up nearly three hours earlier than I had been getting up most of the summer. Then, we had a busy morning of cleaning, followed by a dentist appointment for myself, Daddy Mac and Monster Boy, then more cleaning, then work until 7:30, then dinner, then TRYING to make a new fitted diaper (which has been trial and error - sewing for the first time with cotton velour, while trying to conceal a panel of PUL which is already not easy to sew with, plus elastic. SIGH. I'll try again tomorrow!), then having to go to the airport to pick up my mom, whose flight was delayed two hours... and now back home again and headed to bed... so I am physically exhausted.

I am also tired of my blog layout. So sometime, perhaps next week when Monster Boy is in school and Miss Sunshine is napping, I will be playing around with things and hopefully getting a new set up going...

I am also tired of not having a working dishwasher, although not much I can do about that at this point!

And there are many more things, but really, I'm too tired to list them all right now... (sometimes I just can't resist that whole tongue-in-cheek thing, I admit...)

Sunday, August 15, 2010

Some kind of routine

I have always done better with routine. I am not a "fly by the seat of my pants" kind of person - I like to have PLANS. I have learned, with two small children, that most PLANS never actually happen the way you plan them to, but I still need that structure in my life.

My son thrives on structure. He has been a schedule baby from day one. I never got that whole "put the kid on a schedule" mentality until he was born. He put HIMSELF on a schedule when he was about 3 months old, and I swear he never looked back. Even now, if there is a major disruption to his general schedule, it causes havoc in our home.

Miss Sunshine, on the other hand, could care less. As long as she eats when she is hungry, and gets a nap at some point in the day - the only thing consistent in her life is when she wakes up and when she is ready for bed. And she's perfectly fine with that. I struggle to keep some semblance of a schedule for her because I know she does function better if I keep things the "same" but she's much more adaptable than her brother ever has been. If we are half an hour late getting down for nap, or eating dinner, it's not an issue in her world. With him, you'd swear the entire Earth just fell off it's axis.

School starts for Monster Boy this week, and I am SO ready to get on with that schedule. But the first few days of this week are still at home, and I am struggling with what to do during the day. I have to get him up at 6:30 in the morning, to make sure he is used to that by the time classes actually start. But what to do with him during that time before Miss Sunshine wakes up? Because I don't plan to change her routine until I absolutely have to - since she is more adaptable than he is. And I need to get him used to eating lunch at a much earlier time as well, since they will be eating lunch at school EXTREMELY early in the day. I have a sneaking suspicion this is going to be a VERY long week...

Friday, August 13, 2010

A word explosion

I have been stressed to the max about Miss Sunshine's speech progress ever since our trip to Shriner's last month where they started bringing up the possibility of another surgery if her speech didn't start catching up. I tried to not worry about it, but let's be honest here - if some doctor told you your child would have to have surgery if they didn't start talking more, wouldn't you freak out too? Yep - that's what I thought.

So I discussed it further with our speech therapist here at home, and while I could tell she was trying very carefully to word it so that she didn't freak me out, she basically told me the same thing that I was told in Chicago. If Miss Sunshine didn't start progressing SOON, there was a good chance we were looking at another surgery... Well, that did nothing to calm me down. She did tell me, however, that between about 18-20 months is what they consider "make or break" time for kids in speech therapy - kids who were borderline delayed, like Miss Sunshine, would either catch up, or fall significantly further behind during those few months - because this is when most normal speech development "explodes" as well.

I suppose a little background might help - Miss Sunshine has been very slow to add sounds to her vocabulary. Typically (or so I am told) a child who undergoes palate repair will add a lot of new consonant sounds almost immediately. Miss Sunshine's has been much more gradual - she has been adding new sounds, but not at the pace or number they want. And she was hardly doing any "imitative" speech at all. You know, when you pattern a word for your child and they attempt to repeat it (whether or not it comes out sounding anything like what you said)? Well, she just wouldn't repeat things. These were the big concerns that they had as far as her speech. And again, at this age, it's hard for them to judge whether these are issues relating to her palate repair, meaning it was not successful and she's not doing them because she's not physically capable of doing them, or if it was just her being stubborn.

Well, apparently Miss Sunshine took the speech therapist's words about 18-20 month olds to heart - because ever since she turned 18 months a week ago - it's been an explosion of words at our house. The imitative speech has FINALLY shown up and it is amazing what words she can say. In the last week alone we have added (in some fairly recognizable form even if it isn't perfect pronunciation) thank you, bubble, purple, blue, bird, cow, moo, dog, brother, daddy, mommy. grandma, hi, bye-bye, down, up, cup, pop, poop, milk, yay and yeah. She also randomly says there, that, mine and no. And ironically the words that come out the clearest are thank you, bubble and purple. Go figure - out of all the easy words she COULD say, she says thank you, bubble and purple the best. This is definitely my kid. But at least I can breathe a sigh of relief that she is FINALLY doing what she is supposed to be doing!

Wednesday, August 11, 2010

Reflection

Today has been a melancholy sort of day for me. I don't really know why - nothing has happened to stimulate this. Except maybe the realization that Miss Sunshine is no longer a baby. I looked at her today, playing with all the other children at my new job, and realized, she is a little girl!




Yes, you read that right. I have a job. It's only part-time, it's only minimum wage, but it's better than nothing. And the best part is - the kids can come with me! Yes, free childcare. So no need for daycare and that lovely expense. Daddy Mac had positive news on the job front as well, and we are very hopeful that a significant raise is headed his way (hopefully sooner rather than later) so things can start to get back on track for us.




Life is settling down. Bills are starting to get under control, slowly but surely. There still isn't enough money left at the end of the day (or week, or month, or however you look at it) but the gap isn't as huge as it was six months ago... we are catching up on things slowly but surely, and I am confident that within the year, things will be back to where they should be. Life has handed us a lot of very tart lemons, but I'm starting to stock up on sugar for that lemonade we'll be making!




Monster Boy starts school in a week. A WEEK! How did that happen? How did my sweet little boy go from this:





To this?





It just doesn't seem possible somehow... maybe that's where the melancholy is coming from.