We had our meeting with the clinical geneticist yesterday. I have been picturing what this meeting would be like for over 2 1/2 months (that's how long we've had the appointment), and I can definitely say that none of the scenarios that I had played out in my head ended up occurring. I guess I was thinking that the clinical geneticist would walk in and say, "Oh, I know exactly what this is!" or "I think it could be this, this, or this, but we need to test and see". And then there's the worst scenario that I had played out in my head, the one where the clinical geneticist walks in and says, "Oh, she doesn't have something genetic--she is the way she is because you ate lunch meat during your pregnancy! Shame on you!"
No, seriously, I have still held onto that irrational fear that Camille is having all of these difficulties because of something I did during my pregnancy. Was it because I ate lunch meat sometimes? Or was it because I drank a Coke occasionally? Or was it because I carried Henry around for the entire pregnancy? Or because I possibly had a fever at the beginning of my pregnancy? Or because we had such a stressful, sad year where I had done more crying than I had my entire life? I have literally scrutinized every possible thing that I could have done during the pregnancy to cause Camille to be born with the issues that she has, and I have agonized about the possibilities. Even though doctor after doctor has told me that it was nothing I did, I still have not been able to let that go.
I think I finally can now. Although the appointment did not go the way I pictured it going, and although we are still left without a diagnosis, this geneticist and her 30+ years of experience has finally relieved me of my agony about "causing" this for Camille. In a nutshell, she said that she definitely thinks that Camille has something genetic, meaning that it was some mutation on some gene that caused this, and nothing about the pregnancy. Nothing. She also said that she thinks that she has seen one other child in her experience with features similar to Camille, and that she has some ideas on what syndrome Camille could have, but she wants to go back and do some more research and consultation before she tells us anything more.
I guess you could look at this two ways, and Jason and I of course did. Jason, Mr. Positive Optimist, thought that she could know what it was, or maybe didn't really know, but wanted to do some more checking before telling us something and having us get our hopes up, or worry prematurely, about something that might or might not be. Maggie, Mrs. Worst Case Scenario, thought that it meant that she thinks Camille could have something horrible, and she doesn't want to tell us yet until she knows for sure because it is so awfully terrible.
Yeah, let's go with Jason's view instead. So, we are waiting again, which is at least a familiar place to be. We'll let you know when we hear anything further.
Thank you for keeping up with Camille and her story. As I told Jason as we ate lunch after our appointment yesterday, it absolutely blows my mind that my child could have something so rare that no one knows what it is, or that a geneticist who has seen thousands of children might have seen one other who looked similar to Camille. Some might see that as a "poor us" sort of thing--why should we have to have such bad luck? But, although I have many "poor us" moments, that's really not what I think when I think about Camille having something so rare, so different, so unlikely. I seriously think, "Wow! God has given us such a unique child. A child who is different and special, who is just the way she is supposed to be, just the way she was fearfully made. A child who will bring us blessings and joy that very few others get to experience." And as we move toward a possible answer, I hope to keep that thought central in my mind and heart.
Thursday, November 19, 2009
Monday, November 16, 2009
Happily Busy
I know that I have not updated my blog in a very long time, even for me! My commitment to try to update every day or every other day has been blown to bits with this absence! But, I have some good reasons for it. I guess you could say I have been busy--happily busy--doing many different things like...
...enjoying my happy 5 month old baby girl! You read that right--I did say "happy!" A few weeks ago, Camille was put on a muscle relaxant for her irritability and stiffness. The physical therapist who is seeing Camille explained it like this: Camille has stiff muscles, which makes her irritable because it is uncomfortable, which makes her more stiff, which makes her more irritable, etc. It's a cycle that can be broken (or at least helped) with a muscle relaxant. In Camille's case, it has done wonders. She has gone from crying all the time to crying hardly at all. She is now smiling most of the time, and has started really interacting with us. She is also sleeping better, too. It's not a miracle cure--she still has some inconsolable moments, and she is still pretty stiff, but she is better, and we are so thankful.
...trying desperately to keep up with my "happily busy" 2 year old. He is 100% boy, and 150% wild! This little boy plays harder than any other child I know. He seriously never stops--I even catch him wiggling in his sleep! But he is oh-so-much fun! I caught him the other day in a rare still moment. He just crawled up into my lap, and snuggled up next to me. I was looking into his sweet little face, and breathing in his sweet little smell, when all of the sudden, he looked up at me innocently, jabbed me in the eye with one finger, and said simply, "Poke". And just like that, my sweet moment was over, but not before I had a really good laugh.
...taking Camille to all of her therapy appointments. She is now having physical therapy twice a week and occupational therapy twice a week. She will begin speech therapy sometime after the first of the year. So far, the sessions have gone well. She is not really too behind developmentally, which was encouraging to hear, and she has already made improvements in therapy.
...feeding Camille by spoon! Again, you read that right! Since she is still refusing the bottle as if it is pure poison, one of her OTs suggested that I try introducing some solids by spoon so that at least she would be getting some practice eating orally. Turns out, Camille thinks eating by spoon is great fun, and she is pretty good at it too! So far, she has had rice cereal and applesauce. Everyone sees this as a very hopeful sign for her future as far as eating goes, which is a big relief to us.
...cheering on the Baylor Bears. Jason and I got season tickets for football again this year, and we have enjoyed getting to go to the games as our "dates" while my parents watch the kiddos. Well, at least I have enjoyed it. I'm not sure that Jason enjoys going to Baylor games with me. I think I embarrass him on a regular basis. I tend to get a little "in" to the games. Well, maybe more than a little. I guess it's not proper for an ordained minister's wife to stand up and yell, "Throw the stinkin' flag" or "That's the stupidest call I've ever seen!" To be fair, the Bears were playing Texas this past weekend when I might--or might not have--yelled those statements. If Baylor so much as thought about committing a personal foul, the refs called one. Everyone knows Texas always gets all of the calls, right? And to be really fair, Jason has only had to pull me down by the waistband of my pants one time in one game. And that was a basketball game against A&M, where I really did have to tell a group of very obnoxious Aggies to "Sit on down" after they were on the beneficiary end of a very bad call. Who cares if I was 5 months pregnant? They were being incredibly annoying! Totally justifiable, if you ask me. Anyway, win or lose, we still have the cutest Baylor fans around at our house, don't you agree?
...and finally, probably most importantly, we have been receiving very good news. Camille does not have any of the 3 syndromes that I mentioned in my last post that the geneticists thought she could have. As I have said before, it's great that she doesn't have any of those 3 (they were all really severe syndromes), but it is still hard not to have an answer. We meet with another geneticist this Wednesday. She is supposedly really good at identifying syndromes--she has 30 years of experience doing just that. We are hopeful that she will be able to help us. Please pray for that appointment. Pray for peace at whatever the outcome, answer or no answer, good answer or bad answer.
I will try to start updating regularly again, happily busy or not!
...enjoying my happy 5 month old baby girl! You read that right--I did say "happy!" A few weeks ago, Camille was put on a muscle relaxant for her irritability and stiffness. The physical therapist who is seeing Camille explained it like this: Camille has stiff muscles, which makes her irritable because it is uncomfortable, which makes her more stiff, which makes her more irritable, etc. It's a cycle that can be broken (or at least helped) with a muscle relaxant. In Camille's case, it has done wonders. She has gone from crying all the time to crying hardly at all. She is now smiling most of the time, and has started really interacting with us. She is also sleeping better, too. It's not a miracle cure--she still has some inconsolable moments, and she is still pretty stiff, but she is better, and we are so thankful.
...trying desperately to keep up with my "happily busy" 2 year old. He is 100% boy, and 150% wild! This little boy plays harder than any other child I know. He seriously never stops--I even catch him wiggling in his sleep! But he is oh-so-much fun! I caught him the other day in a rare still moment. He just crawled up into my lap, and snuggled up next to me. I was looking into his sweet little face, and breathing in his sweet little smell, when all of the sudden, he looked up at me innocently, jabbed me in the eye with one finger, and said simply, "Poke". And just like that, my sweet moment was over, but not before I had a really good laugh.
...taking Camille to all of her therapy appointments. She is now having physical therapy twice a week and occupational therapy twice a week. She will begin speech therapy sometime after the first of the year. So far, the sessions have gone well. She is not really too behind developmentally, which was encouraging to hear, and she has already made improvements in therapy.
...feeding Camille by spoon! Again, you read that right! Since she is still refusing the bottle as if it is pure poison, one of her OTs suggested that I try introducing some solids by spoon so that at least she would be getting some practice eating orally. Turns out, Camille thinks eating by spoon is great fun, and she is pretty good at it too! So far, she has had rice cereal and applesauce. Everyone sees this as a very hopeful sign for her future as far as eating goes, which is a big relief to us.
...cheering on the Baylor Bears. Jason and I got season tickets for football again this year, and we have enjoyed getting to go to the games as our "dates" while my parents watch the kiddos. Well, at least I have enjoyed it. I'm not sure that Jason enjoys going to Baylor games with me. I think I embarrass him on a regular basis. I tend to get a little "in" to the games. Well, maybe more than a little. I guess it's not proper for an ordained minister's wife to stand up and yell, "Throw the stinkin' flag" or "That's the stupidest call I've ever seen!" To be fair, the Bears were playing Texas this past weekend when I might--or might not have--yelled those statements. If Baylor so much as thought about committing a personal foul, the refs called one. Everyone knows Texas always gets all of the calls, right? And to be really fair, Jason has only had to pull me down by the waistband of my pants one time in one game. And that was a basketball game against A&M, where I really did have to tell a group of very obnoxious Aggies to "Sit on down" after they were on the beneficiary end of a very bad call. Who cares if I was 5 months pregnant? They were being incredibly annoying! Totally justifiable, if you ask me. Anyway, win or lose, we still have the cutest Baylor fans around at our house, don't you agree?
...and finally, probably most importantly, we have been receiving very good news. Camille does not have any of the 3 syndromes that I mentioned in my last post that the geneticists thought she could have. As I have said before, it's great that she doesn't have any of those 3 (they were all really severe syndromes), but it is still hard not to have an answer. We meet with another geneticist this Wednesday. She is supposedly really good at identifying syndromes--she has 30 years of experience doing just that. We are hopeful that she will be able to help us. Please pray for that appointment. Pray for peace at whatever the outcome, answer or no answer, good answer or bad answer.
I will try to start updating regularly again, happily busy or not!
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