Whoo-hoo!

We, two very adorable children, one with a scratch on the nose, the other with a big silly bow, have two very exciting things to tell you.

Did we mention they are two very exciting things? Ready???

No, don't worry. One of them is not that our Mama is pregnant again.

Okay, here goes! The first is that Camille did not have to be admitted to the hospital. Her infection is clearing up!

The second is that Camille ate 5 ounces of formula BY MOUTH FROM A BOTTLE TODAY! Can you tell how proud she is?!

See, told ya! Very exciting! Can we get a Whoo-hoo?! (Or Sic 'Em Bears. That kinda works for this photo too!).

Sick...again...

We are a house full of sickies once again. Or is is sickos? Sickos sounds too much like psychos, so I'll stick with sickies. Psycho hits just a little too close to home as a descriptor for me right now.

Anyway... Jason, Henry and Camille are all sick, each with their own issues. Henry had pink eye followed by a cough/congestion which has lasted for over a week now. Jason may or may not have the flu. And Camille. Sweet little Ms. I-catch-everything Camille. We are not sure what she has.

Her latest round of the sickies started right after we got home from the Houston genetics visit. She had fever and some congestion, and our pediatrician thought she might have seasonal flu. She took Tamiflu for 5 days, and that seemed to clear that up. Then, she started screaming and flailing (more than usual) when we were feeding her. We were concerned that her g-button might be infected, and it turns out it was.

Our pediatrician originally thought that she had a staph infection in her button, and so he gave her an antibiotic for that while we waited on the culture to come back. However, she started running fever again last night, and it was pretty high, so I took her back into the doctor today. The culture had come back by now and it was not staph, but some sort of other bacterial infection. The pediatrician who saw Camille today (ours is out of town and probably very thankful that he gets to miss the latest round of Camille drama) said that it was a really uncommon form of bacteria that is not seen much (gee, sound familiar for Camille?). He also said that this type of bacteria usually does not respond to oral antibiotics. So, he gave Camille a shot of antibiotics today, will give her another one tomorrow (yes, we have to go back into the doctor on a Saturday), and then if it doesn't respond to those, he will have to admit her to have IV antibiotics. Fun, fun.

Not only does she have that going on, but he also thought that she might have RSV. He is going to check her breathing again tomorrow to see if it is better after we have been giving her breathing treatments today.

We also found out today that Camille's DHEA levels are still really elevated, and have even gone up slightly from before. No one knows exactly what that means still, even after these new rounds of tests, which is exceedingly frustrating to me. Apparently, a lot of Camille's sleep/irritability issues could be caused by her elevated DHEA levels, which means that we would really like to figure out a means of treating this to get her feeling better. We have been up with Camille all night almost every night for the past few weeks as she has had a harder and harder time sleeping.

So, I'll try to update you tomorrow on the latest. You all continue to be such an amazing support to us, and we truly do covet your prayers.

Days

I saw a college friend of mine last week at a wedding, and she wanted to hear all about Camille. I filled her in, and after hearing the whole drama-filled saga, she looked at me and said, "Wow, I just can't believe you have such a good attitude about all of this!" I replied something back along the lines of, "Well, I try to, but I certainly have my days."

Days where it makes me sad, and okay, even a little irritated, to hear about everyone else in the world having healthy babies.

Days where I want to scream if I read one more article about some actress and her perfect baby who sleeps through the night at 2 weeks old and never ever cries. I am thinking about canceling my People Magazine subscription for this very reason, but then if I did, what would Jason read?

Days where I have to hold myself back from saying something inappropriate to some lady at the store who, upon hearing that Camille weighs 11 pounds at 7 months, proceeds to tell me how incredibly off-the-charts huge her baby was, and how she just couldn't stop her from growing! And golly, her baby's head was just so darn big, no doubt to hold her incredibly big brain! Seriously, it's happened. More than stinking once.

Days where I am grouchy about having to go to therapy appointment after therapy appointment, and days where I hate being a "regular" in our pediatrician's office. They know my voice when I call now--it's a little embarrassing.

Days where I feel annoyed about having to save up to pay for all of Camille's medical needs and equipment instead of saving up for a vacation.

Days where I feel irritated that Jason and I can't go anywhere by ourselves for any length of time because Camille is g-button fed, and because she still frequently gets inconsolably irritable.

Days where I completely freak out about the future, agonizing about all of the what-ifs. What if Camille never does this or that? What if something happens to me or Jason--who will take care of Camille? What if Henry grows up feeling neglected because we have to focus so much on Camille's needs?

And on these days, I do feel sad, angry, annoyed and overwhelmed. I do wonder "Why me?", and I do think about how "unjust" all of this is.

See there? I can Pity Party with the best of them.

And then I think about the women that want so badly to have a baby and cannot for whatever reason.

Or I think about so many parents who have lost children to illness or accidents.

Or I think about the people in Haiti. Those who have lost so much when they already had so little. And yet, so many there are still praising God for who He is and what He has given them.

And I am humbled. I am reminded that I am very blessed. I am reminded that my life is so good, so rich, so fulfilling.

And most of all, I am reminded of how grateful I am for one tiny little girl who has already taught me such amazing truths in her short little life.

Bitty Girl

My blog has a great new look, courtesy of my good friend, Meredith! I decided it was time to ditch the boring blogspot template and actually have something cute and creative! Unfortunately, my cuteness and creativeness are running low (or were they ever high? Not sure on that one!), and so Meredith came to the rescue. Thanks, friend!

Obviously, the blog has a new title, too. Those of you who know me well know that I love to make up nicknames for people. I have been that way since I was a little girl. I probably had 10 different nicknames each for my mom, dad and sister growing up. Henry has inherited that from me as well--he loves to make up all sorts of names for us, and thinks he is hilarious when he calls us something different than our "true" name. Jason and I have various nicknames for both Henry and Camille, but the one that has stuck most with Camille is Bitty Girl. It just plain fits her. The cutest thing in the world, though, is that Henry has started calling her that too. He'll walk into where she is in the morning and say, "Hi, Bitty Girl!" I promise there is nothing more adorable! If I am ever quick and savvy enough to catch that on video (unfortunately, however, quickness and savviness are also at an all time low for me right now ;) I'll definitely post it for your viewing pleasure.

Until then, you might consider this pleasurable viewing. Check out my Bitty Girl sitting! I had her propped up against the couch in these pictures, but she can actually sit alone (propped on her arms) for about 15-20 seconds now! Of course, big brother cheering her on saying, "Yay, Bitty Girl!" is excellent motivation. What in the world did I do to deserve such precious children?

Getting Closer...

I have two reasons for my delay in posting about our TCH genetics visit. One, I was at a wedding this weekend in San Antonio. A good friend of mine from college was getting married, and my mom and I drove down for it. Jason and the two grandpas kept the kiddos. Let's just say that it took all three of them and leave it at that. I will say, however, in their defense, poor little Camille was sick yet again, which did not make things easier.

The other reason for my delay in posting is that I have been wracking my brain for what to write about the visit, and have come up with virtually zero. We feel like so much happened, but then when we start to talk about it, we can't think of anything to say. It's weird, but then again, so is this whole situation.

Speaking of weird, I guess if I am going to tell the story of our visit, I am going to have to start back at last Tuesday when I received a phone call from the endocrinology office with some very weird test results. If you'll recall, our pleasant endocrinologist had boldly proclaimed that he thought what we were there for was nothing and that there was absolutely nothing endocrine related that could help us figure out Camille's central diagnosis. Uh, yeah, he was apparently very wrong about that.

You see, the results we got on Tuesday are the only truly "abnormal" results we have gotten on Camille so far. We have known that she has something going on, but no objective test has been able to show us much so far. These results were from the blood work the endocrinologist took to measure Camille's hormones to see why it appeared that they were overproducing. One of these hormones, DHEA, came back off-the-charts-high. Basically, a baby Camille's age is supposed to have a DHEA level of 19 to 42. Hers was 780. Yikes.

The kicker is that no one knows exactly what that means. It could still be a genetic condition in which the adrenal glands overproduce, but that genetic condition could not account for Camille's other issues (the small head, low birth weight, failure to thrive, feeding issues, etc.). If she did in fact have this genetic condition, then that would mean that she would have TWO genetic conditions--one to account for the hormones, the other to account for all the other stuff. How incredibly freaking unfair is that? Apparently, though, it's possible.

The other option on the table for a possible cause of this is that she has a tumor on one of her glands causing it to overproduce. Yeah, so I thought the tumor had been ruled out by our most recent ultrasound, but apparently not. We would have to do a CT of her abdomen to be sure.

So, we received this information on Tuesday, and brought it along with us to the geneticist. Let me first say that he was absolutely wonderful. He spent lots of time with us; explained everything thoroughly; talked so sweetly to Camille; and my personal favorite, he looked me in the eyes and said that Camille's condition was not my fault. I know that every other doctor we have seen has said the same thing, but the doubt really starts to creep in as we go longer and longer without a diagnosis. I just keep thinking that maybe if I had eaten more vegetables during my pregnancy, or other idiotic things like that. He once again assured us, though, that Camille absolutely has something genetic, it's just a matter of finding which genetic condition it is.

He explained that there are over 5000 genetic conditions out there, and that each of us are carriers for at least 6, but more than likely even more than that. Watson (of Watson and Crick who discovered the structure of DNA) mapped his own gene sequence and found that he was a carrier for over 30 genetic conditions. Anyway, probably more info than you wanted to know, but the thing is, Jason and I are carriers for at least one syndrome that is the same. The recessive genes have been in our families for generations; they just happened to come out now in sweet Camille.

So, in terms of finding out which syndrome this is, that's when it gets a little more difficult. This geneticist also said that he could not tell just by looking at Camille which syndrome she has. Darn, that would have made things so much easier! But, he did help us sort through a couple of things.

One, I had a list of syndromes that I was wondering about from my own research, and he tentatively ruled out most of those just by examining Camille's features. The catch was that in some of the syndromes, the child "grows into the look", and so we can't say for sure on a couple of them until she is older.

Two, he thinks that the hormone issues are THE KEY in finding Camille's diagnosis.

Three, he showed me how to access and use a database where you can put in different features and see which syndromes match which features. How awesome is that? Or dangerous, depending how you look at it. Jason was rolling his eyes as the geneticist explained all this and I grew more and more excited about my fun new toy. It's like a psycho-worrying, Internet-researching Mama's dream come true.

Four, he did tell us about one syndrome that might explain both the hormones and the other issues, but Camille did not have the hallmark feature of it (a missing or very short nail on the pinky finger). This syndrome is still a possibility, though, and so we'll just have to wait and see on it as Camille grows.

For now, we have to figure out the hormone issues and go from there. We should have additional test results back on those sometime late this week. I will update you after those come in.

That is, unless I am busy playing on my new fun database! Yep, definitely dangerous!

Still Holding Out Hope

A really good thing that happened so far in 2010 is that our geneticist appointment with Texas Children's was moved up from February 18 to January 21. They had a cancellation, and I just happened to call at the exact right time to get the appointment. And, even better, the appointment is with the geneticist that we had hoped to see, the one that our neurologist recommended. A sign of our luck turning in 2010? Let's hope so!

Anyway, January 21 is THIS COMING THURSDAY! We are leaving Wednesday evening for Houston, and plan on returning Thursday evening, or Friday morning depending on if the geneticist wants to run more tests while we are there.

I am still very hopeful about this appointment. I am hoping with everything I am that this geneticist can pinpoint what Camille has, and put us out of our wondering, questioning, in-limbo misery. It has just been pure torture for me to not have a central diagnosis.

But here's the thing. I am so annoyed with myself for being so hopeful about this appointment. Why in the world would I still be hopeful about this? Our lives these past 7 months have been full of so many questions, and very few answers. We are really no closer to finding out what Camille has than we were when she was born.

In fact, I'm considering writing a children's book about our current situation. It may seem like I am having a psychotic break (and that is not out of the realm of possibility), but I was reading Henry The Little Red Hen the other day, and suddenly a sequel popped into my head. It could be titled The Little Girl Camille and would probably go something like this.

The frantic mommy rushes into the pediatrician's office and says, "Who can help me find out what is going on with my sweet baby girl?"

"Not I," said the pediatrician. "I think she is having digestive issues. I am referring you to a pediatric GI".

"GI, can you help us?" asked the frantic mommy.

"Not I, " said the GI. "I think she has a problem with her heart. I am referring you to a pediatric cardiologist."

"Cardiologist, can you help us?" asked the frantic mommy, getting more frantic by the minute.

"Not I," said the cardiologist. "I think everything she has going on is neurological. I am referring you to a pediatric neurologist."

"Neurologist, can you help us?" asked the frantic mommy, teetering toward the edge and just about to let someone have it.

"Not I," said the neurologist. "Surprisingly, her brain looks normal. I think genetics will have your answer. I am referring you to a geneticist."

"Please, geneticist. Can you help us?" asked the now desperate mommy.

"Not I," said the geneticist. "We have tested this child up and down the street and don't know what she has. We feel sure it is something genetic, but maybe you'd like to see a pediatric endocrinologist to check some of the secondary symptoms."

"Please, please, please endocrinologist. Can you help us?" asked the now wild-eyed and crazy mommy.

And yeah, we all know how that went. His comments really wouldn't be children's book material, so we'll stop there.

And again yeah, maybe our story would make a lousy children's book after all, but that's really a good picture of how I feel. I feel like we have gone around from doctor to doctor, begging for someone to help us, and no one can. It seems like we end almost every doctor's appointment with a referral to another type of specialist. I know this really isn't the case, but I feel like every doctor thinks, "Well, I don't know what this child has, and so I'm going to send them onto someone else and let it be someone else's problem."

So I'm really having to fight hard not to get too hopeful about this appointment because I don't know if I can take another, "I don't know." I am also having to fight off this crazy urge to bust into this new geneticist's office, and say something insane like, "Alright, doc. That's it. We're not leaving until we have a diagnosis."

All that said, we would obviously greatly appreciate your prayers about this appointment specifically. And even though I don't want to ask for this because I hope this doesn't happen, please simply pray for peace for us, even with yet another, "I'm sorry. I don't know. I just can't help you."

Because even if we get that yet again, we will be okay. Camille will still be our Camille, diagnosis or no diagnosis.

And I will still be the frantic, desperate, crazy, wild-eyed mommy, but that's okay too. I kinda like her. After all, she keeps things interesting in this incredibly boring life we have.

Goodbye 2009...Hello 2010!

First let me thank all of you for your outpouring of support regarding our appointment with THE Endocrinologist. I am still preferring to think of him as a very kind, helpful doctor having a really bad day, or a really strong desire to go play in the Texas snow. Either way, I am SO over him and that awful appointment. After all, Camille doesn't allow us to focus on one issue for too long. We have since moved onto other issues.

And that brings us to my current post. A post reflecting on 2009 and thinking ahead to 2010. I know that a New Year's post would have seemingly been a lot more applicable closer to the actual turning of the New Year, but would you expect anything less than a 12-day late New Year's post from me?

To us, when we look back on 2009, we can't help but see it as a year of such loss. In a lot of ways, right or wrong, we feel like so much was taken from us. In January, we lost Jason's mom, Sharon, after a long battle with ovarian cancer. I can't tell you how difficult that was and still is. We miss her more than ever still now, and I know we will for the rest of our lives. I still tear up every time I think about her and how much I wish she were here. She would love getting to see Henry at this fun age right now, and she would be Camille's biggest cheerleader and supporter.

After we lost Sharon, I kept telling Jason that Camille's birth would be the "bright spot" that we needed in our lives right then. Of course, we had no idea during my pregnancy that Camille had special needs. I am thankful for that. I always said that I would want to know if something were "wrong" in order to prepare before the birth, but I really didn't. There's no way to prepare for something like that anyway, and I am so grateful for those months of my pregnancy where we were blissfully ignorant of what was to come.

Camille's birth brought with it such a mixture of emotions. Jason noted a few weeks after she was born that we never really got to celebrate her birth because there was so much anxiety and concern surrounding it. Again, such a feeling of loss, such a feeling of being robbed of the joy of our daughter's birth. Instead of celebrating with balloons and flowers, we spent a month driving back and forth to the NICU, each time walking in the door and wondering what the doctor was going to tell us then about what was "wrong" with our baby. I can't tell you how dark those NICU days seem to me. I can't begin to describe the feelings of despair I felt then.

There were so many things that we just had to "get over" and "work through" during that time. It was a complete change of thinking. When your child is born with special needs, you have to completely revamp your perspective, your sense of what is normal, your idea of what the future should look like. This is not a bad thing, but it is so hard.

And so the second half of 2009 continued with specialist appointments, therapy sessions, and so many unanswered questions. Then, in November, another loss came. My boss, but more than that, my mentor and friend, passed away after a long battle with breast cancer. Charlotte was so similar to Sharon in that they were both such strong, amazing people who changed so many lives. Cancer took two very special people from us in 2009.

And there it is again. That feeling of having so much taken from us. I guess it is easy to focus on that, and some days, that's all I do. But then, other days I realize that that is exactly what I should not being doing. I remind myself to look at the flip side, and see the gain among the loss. And I believe that in Christ, we can do that.

We lost Sharon and Charlotte, but they have gained eternity in heaven with the Savior who they both loved with their whole beings. I can think of no two people who deserved their place in heaven among the saints more than those two special women.

We lost our celebratory, "normal" birth of our daughter, but we gained a precious, fighter of a little girl in our Camille. To see her and who she is as a "loss" because she is different is, to me, saying that she isn't as worthy as a baby born as "typical", that she is somehow defective because she is different. I absolutely refuse to think that or let anyone else think that. It is simply not true. She is our Camille, created in the image of God, created to be exactly who she is. How can we see any loss in that?

All that to say, I have to admit that I was very much looking forward to the end of 2009 and the beginning of 2010. A couple of weeks before the New Year started, I told Jason that I was so excited for January 1, 2010 because I just knew it was going to be our best year yet. A year full of answers, a year full of hope, a year full of joy! Jason looked at me, shook his head, and said, "You do realize that the turning of the New Year is really just a day that was arbitrarily picked out on the calendar. January 1 is just a day like any other."

Okay, so I had never really thought of January 1 that way. This is why he has his Ph.D. and I am only dreaming of working on mine. I refused, however, to let his very smart comment deter me. I was convinced that on January 1, all of our troubles were going to disappear.

And it really felt like 2009 was getting in a few last jabs at us when on December 31, Camille had an ultrasound to make sure that she really didn't have a tumor on her adrenal glands or ovaries (and she doesn't, by the way! Praise God!). Or when we received a phone call from the cardiologist, also on December 31, that the results of her halter monitor were in and her heart rate was indeed dropping into the low 50's, much to their surprise, and they had no idea why or what exactly that meant. I was convinced these last minute 2009 jabs were huge indications that our luck was about to change starting January 1.

Well, not really. My hubby was right as usual. January 1, 2010 dawned just like any other day, and we've already had our share of issues. Our washing machine flooded our house again, and so we have had to purchase a new one. Our dog had some sort of choking/seizure episode where I truly thought she was going to die right then, which would have prompted me to have to commit my husband considering he loves that dog more than me and the kids combined. The docs decided that Camille needs to wear an apnea monitor for a few weeks, which will cost a very pretty penny just like our shiny new washing machine. Our power went out on the coldest day of the year so far, and we had to take the kids to a hotel to spend the night because it was not fixed when the electric company said it would be. You know, typical Whitt sort of occurrences.

I guess the turning of the New Year can't rid us of our day-to-day difficulties, but we are still hopeful for a great year. After all, if we can look at 2009 and see a year of gain in so much loss, we can surely see 2010 as a good one too.

Happy New Year to you all.