Thursday, December 24, 2009

Family Photo


Merry Christmas from the Whitts!

Tuesday, December 22, 2009

How We Do This

It's really interesting the comments I get from people sometimes when they find out about Camille and all she has been through in her little life. The one I seem to get the most is "I don't know how you do it." It's funny because I never really know how to answer this one. One reason for that is that this comment implies that Jason and I are doing something really great. We are so not. Ultimately, we're not doing anything all that special. We're just caring for and loving on the little girl God gave us, just as any other parent would do. I never dreamed I would have a child with special needs. In fact, I can remember telling God on several distinct occasions that He could never give me a child with special needs because I could not handle it. But, we are handling it. Not very well at times, but handling it all the same. Sometimes I don't know how, but we're managing to somehow make it through each day.

And that is the other reason why I find that comment difficult to answer. I have in the past answered something like "We don't know how we're doing it either." And that's how I have felt on a lot of days. But then, some moments remind me of exactly how we are doing all of this, and not instead hiding in the closet crying somewhere (definitely an option I've considered at times).

The most recent moment came during the most awesome Cowboy game ever played--last Saturday's game against the Saints. We had our good friends--Brian, Sarah, and their little boy, Luke--over to eat pizza and watch the game. Let me give you a little background on our friendship with Brian and Sarah. It can really all be summed up like this: they are not our friends. They're family. We have been through so much together, the four of us. Lots of moves, and lots (and lots!) of husbands in grad school. Lots of disappointing Cowboy and Baylor losses, and lots (and lots!) of laughter at our children. And this is such a trite statement to make, but I'm going to make it anyway because it is so very true in this case. The Briscos have truly "been there" for us. And I hope that we have done the same for them too.

So we were at our "pizza pawty", as Luke and Henry liked to call it, watching the Cowboys, and I couldn't get Camille to sleep. Sarah offered to hold her for a minute, and she started talking to Camille about Camille's love for Kenny G because we had been laughing about that earlier. Not that there is anything wrong with Kenny G, but Camille has an obsession. It's Kenny G, or no music at all. No one else will do.

So, Sarah and Camille were chatting about Kenny, and Camille apparently thought it was a hilarious conversation. She started smiling these huge smiles that lit up her whole face. And here's the really special part--Sarah was so excited! She loved that Camille was interacting as well as she was, and that she was happy and smiling. She called for Brian to get the camera, and they took some pictures of Camille smiling at her Aunt Sarah.

That was so special to me, that our friends were so excited about all that Camille was doing and accomplishing--however small those things were. And let me add in here that this was after Sarah had kept Henry all afternoon the day before because we had to take Camille to the ER with a possible obstruction in her belly. (Long story, but she did not have an obstruction, thank goodness!). Sarah has kept Henry on so many occasions for us, often on very short notice, and often after she has come home from teaching 2 year olds all day, only to have to take on my very busy little 2 year old!

And that is how we're doing it. We have friends like the Briscos and all of you, who are constantly blowing us away with how much you care for us. There are so many other examples--our other friends who have special needs children who give us great advice and understand our feelings like no one else can; our friends from church who have us over to their home every Tuesday evening and make dinner for us just so we don't have to do that for ourselves that night; our parents who have literally burnt up I-35 between DFW and Waco in order to come down and help out. It's mind-boggling how much help and support we have, and we could not do this without it.

And so, as we get closer and closer to Christmas, I am reminded each day what gifts we have in our family and friends. I am reminded too of so many who have trials in their lives who do not have the help we do. I am reminded to look for opportunities to help others as others have helped us.

Merry Christmas to you all.

Friday, December 18, 2009

Our Mystery

Since the day Camille was born, she has been a little mystery. Her neonatologist called her a "puzzle". Her pediatrician has said he has "never seen anyone else like her". She has befuddled the entire Cooks genetics team, and after yesterday, we can even say she has done the same to Cooks neurology and cardiology.

Yes, it's true again. All tests came back normal. She had her EEG first, to check for seizures and abnormal brain activity. Let me just add in there that her EEG was scheduled for 8:30 a.m. in Fort Worth. Have you ever tried to get a 2-year-old, a 6-month-old, and a naughty dog ready to leave at 6:30 a.m. for an hour and a half drive to a rigidly set appointment? Oh, and let me say too that Camille was supposed to be sleep-deprived. Have you ever tried to keep a 6-month-old awake on a long car ride? It was definitely fun times! Especially when I-35 was backed up all the way from I-20 to Burleson.

All that to say, we made it for the EEG, slightly late, but she was still able to have it done. And the results thoroughly baffled our neurologist. His exact words when he gave us the results were: "It was remarkably normal." He said that he even went and had a colleague (who is supposedly the best at reading EEGs) look at it to make sure, and he agreed that it was completely normal. What does that mean exactly? Well, it means that it appears that she is not having seizures. It doesn't mean that she has never had a seizure or never will, but currently, it appears that she is not. It also means (and here was the really baffling part for our neurologist) that her brain activity was normal, organized and developmentally appropriate. He said that a lot of times, children with a genetic condition, or a suspected genetic condition as in Camille's case, will have a very disorganized brain activity pattern on their EEG. Camille's, however, was "remarkably normal". Remarkable--that certainly is our little Camille!

The neurologist went on to say that he also completely agreed that Camille had something genetic, and he was very pleased that we would be seeing a geneticist at Texas Children's in Houston in February. He said that he really felt like we would eventually find out what Camille has, and then all of this would make sense.

And there it is again. I am thrilled that Camille is not having seizures and that her brain activity is normal, but that also means that we get another big, fat, highly annoying "I don't know". I am getting really tired of those. If we were getting all of these normal results, along with a "See, there's nothing wrong--she's completely fine!", then I would not be so concerned. I would be just plain thrilled, not thrilled with the nagging irritation and worry that I am feeling now. But instead, what we're getting from every doctor we have seen so far is: "Well, the latest test results came back normal, but we don't know how in the world that is. There is something wrong--we just haven't found it yet."

It was the same song, second verse at the cardiologist. Camille had another heart echo done, and the structure of her heart is normal. She is wearing a halter monitor now for 24 hours just to check again to make sure that her heart rate is still in the normal range, but the cardiologist feels like it will be. No one can explain the heart rate drops or the blueness she has around her mouth, hands and feet at times. Perfect strangers come up to me and remark at how concerning it is that my daughter's extremities are purple, but we have now seen 3 different cardiologists at Cooks who can't explain that.

So, here we are again, stuck in the same annoying place, trying to focus on the good parts like that my little girl's brain and heart still appear healthy, and trying not to focus on the fact that we still really don't know anything more. It does appear that Camille will be able to be seen by the pediatric endocrinologist by the end of the year, which is very good. Now everyone agrees that endocrinology might have some answers. I'm hopeful, but I'm also trying not to get my hopes up too much.

After all, we've got a little mystery. And it appears that she doesn't want to be figured out just yet.

Tuesday, December 15, 2009

The Latest

I thought about titling this post in the same manner I did my last post (by using a single word), but all of the words that came to mind were a whole heck of a lot stronger than "irritated", and remembering how many Baptist folks read this, I decided against it. But you can use your imagination, and after you read this, I'm sure you will be able to guess many of the inappropriate title words I considered using.

It all started last Monday when I took Camille in for her 6 month check up at her regular pediatrician. I took her by myself, having told both Jason and my mom that it was just a "routine" appointment and so I didn't need anyone to go with me. When am I going to learn that nothing is "routine" with Camille? To make a very long and crazy story short, I left the pediatrician's office on Monday with an EEG/neurology appointment for suspected seizures, a cardiology appointment to again examine Camille's heart for defects, and a very long list of labwork that we were to go over to the lab to immediately get done. The labwork was because our pediatrician noticed signs that Camille's hormones might have begun over-producing, to which he said the cause could be anything from another genetic condition to a tumor. Yes, he said a freaking tumor. And I didn't pass out. I was so proud.

He actually looked at me at the end of her appointment, after he had told me that he thought she might be having seizures, and that he was still concerned about her heart, and that he thought she could possibly have a freaking tumor, and said: "You're handling this pretty well." To which I wanted to say, "Really? Well, let's recap, shall we? From the moment my daughter was born, doctor after doctor after doctor has told me that there are all of these crazy, unheard of, obscure things 'wrong' with her, and yet no one can tell me why. And now, you are telling me even more crazy things that could be wrong with her, and all I can do is nod my head. What the heck else can I do?"

So I did. I nodded my head, I took Camille to get her bloodwork done, and I went home. Part of me wanted to laugh hysterically at the insanity of it all. But I was afraid that if I did that, it would turn into crying, and I really felt like this time, if I started crying, I might never stop. A friend asked me this past weekend, not knowing about this latest, if we were beginning to get some answers. When I shook my head with tears welling up in my eyes, unable to answer yes or no, she immediately understood and said, "No answers, just more questions, huh?"

And that's exactly it. I kept putting off writing this, hoping each day that we would have some answers about all of this new round of stuff, so that when I blogged about all of it, I could at least offer some explanations along with all of the new weirdness.

But no. Once again, I got a call from the doctor's office regarding Camille's labwork, and once again, they had no answer for me. The conversation went something like this:

Nurse: "We just wanted to let you know that Camille's labwork came back normal."

Me: "That's great! So that means that she doesn't have any of the things that he thought she could have? Mainly, I mean the tumor?"

Nurse: "Well, no, not exactly. It just means that he doesn't know what is causing it. He has no idea why the labwork came back normal. He still thinks something like that has to be causing it, but he doesn't know what. He's going to refer you to a pediatric endocrinologist."

Me (what I wanted to say): "Super! Another specialist! Just what I wanted for Christmas! Thanks so much!"

Me (what I really said): "Okay. Great. Thanks."


Yeah. So that's where we are. Oh, and don't let me fail to mention that we were back at the doctor today because Camille began vomiting over and over again late last night. She apparently has a stomach virus. The virus has also made it very difficult to feed her by g-button because it has caused her stomach to swell so much that nothing will go down the tube. If this continues into tomorrow, our pediatrician will have to admit Camille to the hospital to keep her hydrated. You know that things are bad when your pediatrician actually tells the nurse after the appointment to refund your co-pay because you have been in his office so much, and he hates for you to have to pay again. Wow. That's up there with the time when Henry was a baby and was screaming so loud when I was ordering a Coke at Sonic that the manager told the girl who brought out my order to give it to me for free since it sounded like I was having such a hard day.

Prayers--lots and lots and lots of prayers--would be appreciated right now. We have Camille's EEG/neurology appointment and her cardiology appointment this coming Thursday at Cooks, and I will try to post right after those to let you know what we find out.

Saturday, December 5, 2009

Irritated

I must admit that I have been feeling a bit irritated lately. After our hopeful visit with the clinical geneticist who left the appointment telling us that she had some "very good ideas" on what Camille might have, we got a call from the genetics counselor last week who told me that Camille has "officially stumped their genetics team." Huh? Excuse me? Did I hear you right? Apparently, the clinical geneticist that we had met with spent the week after our appointment researching her "very good ideas", and came up with nothing. As sort of a last ditch effort, they want to do one more test (more on that below), but otherwise, they have essentially given us a diagnosis of "unknown genetic condition". They encouraged us to have Camille examined by other geneticists in the state to see if they can determine what her condition is, and we are planning on doing that soon.

The final test they would like to do is a skin biopsy, and what they are looking for is something chromosomal. Yes, chromosomes. Again. I feel like we are going backwards in some ways. Apparently, most chromosomal syndromes can be detected on a blood test, which Camille has had. She has actually had two separate chromosomal blood tests, one from Scott & White and one from Cooks. Both came back normal, even on the more sensitive microarray test done at Cooks. But, sometimes, if the chromosomal problem is mosaic (meaning not present on all of the cells, but only on some of the cells), then the problem will not show up on a blood test, but will show up on a skin test. Since everyone originally was convinced that this was something chromosomal, they want to check to make sure that it isn't, hopefully once and for all.

So okay, we'll do the skin biopsy. Fine. That's not what has me irritated. What has me irritated is that I want some answers, and I'm not getting any. And it is looking like I may never get them. All I'm getting is a "Well, we'll try this one last test", a test which it really seems like no one thinks will turn up anything.

And nothing that any of these genetics people (nice as they may be) are saying is helping. I don't care if they are only able to diagnose about 50% of children who are suspected to have a genetic condition. This is my child we are talking about. My sweet child who has been poked, tested, scrutinized, and evaluated countless times, apparently for nothing. Statistics are meaningless when you are talking about your child.

And I guess what is really at the root of my irritation is that I feel like I have already accepted so much, and I just plain don't know if I can accept this too. I've had some real long conversations with God lately that go something like this: "Okay, God. I've accepted that my child is different. I've accepted that she may never do most things that other children do. I've accepted that she will likely have health problems her whole life. And I even have a good attitude about it. Well, most days. There are the days when I see those babies who are around Camille's age, with their bowling ball sized heads, and their giggles and smiles, and they are drinking from their bottles or nursing with no problem at all. Those days are hard. Most days, though, I'm good. But now this? Now I have to accept that I may live my life not ever knowing what makes Camille the way she is? I may have to wonder every day how her 'unknown genetic condition' is going to affect her life expectancy, her health, her development? I'm going to have to tell everyone we meet who gives me a curious look when I tell them that my newborn-looking baby is really a 6-month-old that 'She has something genetic, but we just don't know what?' That's what I have to accept now?"

And so, I'm irritated, and trying desperately not to be. I know that ultimately, I will accept whatever happens because I have to. But it's all just really hard right now. It's a darn good thing I have so many things that take my mind off of this.

Things like Camille rolling over (and over, and over, and over!);

Things like Henry saying, "I love you, Mama", at random points throughout the day, totally unprompted, and then when I ask him for a kiss, he'll get a gleam in his eye and kiss me on the knee or the arm, obviously thinking himself to be completely hilarious;

Things like having Bones-watching marathons with my hubby (If you have never watched this show, you are missing the best show on TV! Go out and rent the first 4 seasons on DVD, and I promise you will be addicted!);

Things like returning to church after such a long absence, and feeling such amazing support and concern from our church family;

Things like sitting in the dark, looking at our Christmas tree that Henry so sweetly "helped" me decorate, thinking about the birth of my Savior, and the sweet peace that His coming brought to the world, the same sweet peace that He gives me everyday, even through all of this.

And really good things like that always trump even the most nagging irritation.

At least on most days.