Tuesday, September 28, 2010

Off we go again.

Miss Sunshine and I are headed out to Chicago this afternoon again. Back to Shriner's for another surgery. It's a "minor" surgery (is any surgery really minor, though?) - she's having her ear tubes replaced. I may have mentioned that she lost the right ear tube back in May. Well, the left one came out a few weeks ago. This will be her third tube in the right ear - she had the one originally placed last August, and they replaced that one in January during her cleft repair - and the second tube in her left ear. We will likely be dealing with this at least yearly for another five or so years. Our ENT here in Wichita told us at the time of her initial ear tube placement that studies have shown that it can take 7-8 years for the muscles of a cleft palate to learn how to correctly do their job and keep fluid out of the ears. In that time, a cleft affected child will need ear tubes to reduce fluid in the ear and reduce the chances of hearing loss. When Miss Sunshine's first set were placed, we were told that there was some minor scar tissue buildup from excessive fluid in her right ear that the doctor was able to remove, and we remain hopeful that this has not affected her hearing, although there is that possibility. We really won't have an accurate idea of the hearing in each individual ear until she is much older and can be more easily tested. What we do know for now is that, even with fluid in her ears (which she definitely had at her last hearing test) her overall hearing (hearing combined with both ears) falls within normal range. So she is not considered to have any hearing loss, which is a real possibility with cleft affected children due to the excessive fluid buildup. And also why we are trying to stay right on top of those ear tubes - to keep it from becoming a reality.

I am also hopeful that once this newest set of tubes is placed, her pronunciation in her speech will become more clear. Right now, she can hear, but everything sounds like it is underwater because of all the fluid. So she is hearing, but not clearly. Hopefully once the tubes are placed she will be hearing clearly and will start refining her speech. For instance - she has started saying "yes" but it comes out "yesh" - and I believe that is in large part due to the fluid build up in her ears. We know she can make the S sound correctly, because she says "SSSSSS" when you ask her what sound a snake makes. So I believe she simply is not HEARING it correctly at the end of words - and therefore the incorrect pronunciation.

I do know that the improvement was immediate and astounding when her first set of tubes was replaced, and since she has had fluid build up for several months in both ears at this point, I think we will see the same kind of reaction. Unfortunately, I also remember that she became a much lighter sleeper after the first set of tubes - and I have a feeling it will be a similar experience this time around - which I am not so much looking forward to. But we know that it is in her best interest - so she and I will be making a flight to Chicago today, having surgery in the morning, and flying back tomorrow afternoon. So if you all could say some prayers (or,you know, whatever it is that you do!) that things go well on our trip and during her surgery, and that mommy retains what little sanity she has left, I would greatly appreciate it!

Friday, September 17, 2010

Show me yours...

So I had this little mental goal in my head of posting at least one cleft related blog each week during the month of September. I'm not doing such a good job of that, but I'm going to try.

This week I figured I'd give you some pictures.

A lot of times, what people envision in their heads when they think of cleft just isn't the reality, especially in Little Miss Sunshine's case. So I thought I'd post some before and after pictures so you can get an idea of what her cleft palate actually LOOKED like.

Miss Sunshine's formal diagnosis is an Isolated Cleft Soft Palate with Bifid Uvula (meaning her uvula was split as well). To date, we are not aware of any possible genetic contributions, as we are waiting on insurance to kick in so we can have genetic testing done to eliminate any disorders, but she does not have any markers of any of the more common disorders associated with cleft, so our cleft team believes she simply has the isolated cleft. I will go into more detail about what the different clefts are and even touch on some of the possible disorders that can be associated on a later blog. For now, we'll concentrate on the ICSP that she has.

Here is what her palate looked like before surgery: (Bear with me - it's darn near impossible to get a clear picture of the inside of an infants mouth, much less the roof of their mouth... so these aren't the highest quality, I know)

It's kind of hard to see from these pictures, but you could see straight into her nasal cavities (which always made for fun eating time)

And this is what her palate looked like one week post op...

Again, sorry for the quality. When you look at these pictures, you can see where they cut on the sides of the roof of her mouth to release the tension in order to sew the cleft together. There is a lot more involved in cleft palate repair, including recreating the nasal lining, rearranging the musculature of the roof of the mouth, as well as the closing of the roof of the mouth. I'm working on some diagrams, etc, to help explain all of these and will post it on a future blog.

For now, I hope these pictures were able to make it a little bit more clear to you what a cleft soft palate looks like and what we have been through with our Little Miss Sunshine...

Thursday, September 9, 2010

September is...

one of my favorite months. The weather (sometimes) starts to cool down from the summer heat, but isn't chilly or cold yet... the leaves slowly start to turn on the trees to pretty colors around this time... school is back in session... and it's Craniofacial Acceptance Month!

It's amazing all the misconceptions you can have about a condition until you actually have to deal with it yourself. Frankly, I never really gave a thought to what caused clefts. Until Miss Sunshine was born with one. And then I went through the most typical reaction of any parent who has a child with a birth defect - GUILT. Guilt is such an ugly word. But I blamed myself. What did I do wrong? I must have done something to cause this. Why else would she have it? Did I eat something I shouldn't have? Drink too much caffeine? Not take enough vitamins? Not enough exercise? Was it all the morning, noon and night sickness I had the first six months? It HAD to be my fault.

The reality is - it wasn't my fault. I didn't do anything wrong. Sometimes there is a reason for cleft - genetics can play a part. But many times, most often, really, there is no rhyme or reason. It just happens. The doctors don't know why. They know it's a formational defect. They know roughly when, during the development process it happens. But they don't know WHY. Some studies have shown that increased folic acid before and during pregnancy (above what your typical prenatal vitamin has) can lessen the chances of cleft. But it's no guarantee. There are other medical conditions that are related to cleft, meaning that if someone has this condition, they typically also have a cleft. But they are another one of those no rhyme or reason things.

The way I see it, God gives us these children for a reason. To teach us something. To make us stronger parents, to learn, to educate ourselves and others around us about the realities of having a child with a birth defect. Whether it's severe or not, it still affects you as a person, deeply.

I would give anything to not have to watch my daughter have struggled with eating, to have to go through the pain of surgery and recovery, to face other potential procedures, to have to deal with speech therapy and other therapy down the road... but at the same time, I don't think I'd change anything about this journey. As hard as it has been for us to deal with all of this, as hard as it is to watch her go through all of this, as much as I have blamed myself and struggled with depression over it - so too have we grown. As parents. As partners. As people. As a family. And I don't think I would trade that for anything.

Monday, September 6, 2010


We made a drive to Springfield (I'll let you guess which state - I know, I'm such a tease) this weekend for my cousin's wedding.

First, I can't believe my cousins are old enough to be getting married - I am by far the oldest (my sister is closest in age to me, and then it's at least five years down the line) of the third generation in my family, and realizing that my cousins are now old enough to be getting married makes me feel even older than that whole "in my 30's" milestone I hit week before last.

And then I realized that it has been four years that Daddy Mac and I have been together. Some days it feels like it's been a lifetime, and some days it feels like it was just yesterday.

Maybe it was the wedding, or the timing, or really, who knows what. But I've just been thinking the last few days how very very lucky I am to have met a man like him when I did. Well, maybe not met. I really met him nearly five years before we started dating, and I'll be honest, I didn't like him much when I met him. My husband is very self-assured, and that can sometimes come across as arrogant. He is really not like that at all - in fact, very much the opposite, but he can easily come across that way from time to time. And that was indeed my first impression of him. He'll freely admit he wasn't much of a fan of mine, either. I admit to my faults - I know I have them! Somewhere along the line, though, he decided to ask me out. I don't know (and I don't really think he does either) if it was a whim, or what, but I was unable to go out with him the first time he asked because of my son. At that point, I think it became a matter of pride - you know, that whole male, I can't believe she turned me down, now I have to get her to go out with me type of thing. So I agreed to go out with him, and it turned out we had so much in common, it was almost eerie. And things progressed (rather quickly, honestly) from there. We were engaged six months after we started dating, although it was over a year later that we got married. But honestly, he was 30 and I was 27 and we were just at that point in our lives - we didn't need a lot of time to know. He has been an AMAZING father, both to Monster Boy and to Miss Sunshine. He truly considers Monster Boy his son - he never refers to him as anything but "my son". Monster Boy has never been "my wife's son" or "her son". He's always been OUR son or HIS son. Even before we were engaged, he called him his son. That was when I knew. You don't find that very often. And I count myself lucky in so many ways that we both decided to give each other a try even when we didn't think we liked each other very much - because I never would have found the man I was meant to spend the rest of my life with if we hadn't.