Hey Cinderella

Maybe it's because of all of the recent royal wedding hype. Or maybe it's because my son has decided that he loves the Disney princess movies. Yes, you read that right. Much to his daddy's dismay, Henry has become infatuated with Sleeping Beauty, Snow White and The Little Mermaid. In defense of his gender identity, he does like the parts with the dragons and other various villains best, but he also doesn't turn away when the princesses don pretty dresses and begin singing of true love. Whatever the cause, I have had a song that I liked when I was younger stuck in my head for the past few weeks.

We believed in fairy tales that day
I watched your father give you away
Your aim was true when the pink bouquet
Fell right into my hands

We danced for hours and we drank champagne
You screamed and laughed when I got up and sang
And then you rode away in a white Mustang
To your castle in the sand

Through the years and the kids and the jobs
And the dreams that lost their way
Do you ever stop and wonder
Do you ever just wanna say

Hey hey, Cinderella, what's the story all about

I got a funny feeling we missed a page or two somehow
Ohh-ohhhh, Cinderella, maybe you could help us out
Does the shoe fit you now

We're older but no more the wise
We've learned the art of compromise
Sometimes we laugh, sometimes we cry
And sometimes we just break down

We're good now 'cause we have to be
Come to terms with our vanity
Sometimes we still curse gravity
When no one is around

Yeah, our dolls gather dust in the corner of the attic
And bicycles rust in the rain
Still we walk in that fabled shadow
Sometimes we call her name

Hey hey, Cinderella, what's the story all about
I got a funny feeling we missed a page or two somehow
Ohh-ohhhh, Cinderella, maybe you could help us out
Does the shoe fit you now

(Suzy Bogguss "Hey Cinderella")

I am willing to concede that more than likely, the real reason I began thinking about this song again recently is that I have been feeling very un-Cinderella-like lately. As I watched coverage of the beautiful royal wedding, and as I have watched the Disney movies with Henry, I have found myself scoffing and doing more eye rolling than I have since I was thirteen. It's not the notion of true love. I have never been more sure of true love in my life, and the fact that I have definitely found it. I tell Jason everyday that if he wanted to leave, no one, including me, would blame him. He puts up with so much, and he does it with a positive attitude and unwavering faith. No, it's the idea of the fairy-tale life, the happily ever after, that bothers me.

My life now is about as far from a fairy tale as you can get. It could almost be a spoof of a fairy tale. I sometimes feel like I wake up and hear a voice laughingly saying "Maggie, this is your life. The anti-fairy-tale. Enjoy." Other times, I think of Jack Nicholson's famous line, "What if this is as good as it gets?"

Take the following pictures for example. When I was pregnant with Camille, this is not exactly what I pictured her room, or the rest of our house, to look like. We have begun adding more and more equipment as Camille has developed more and more issues.

Suction Machine

Pulse ox, decompressors, medications

Feeding pump and IV pole

Oxygen Compressor

Stander

And as I type this, I am sitting in a hospital room with Camille, listening to monitors beep and nurses chat with one another out in the hall. This is our second hospitalization this week. Last week at this time, we sat in yet another hospital room in yet another hospital, listening to our daughter struggle to breathe.

Camille has recently begun to have more difficulties that her doctors are still trying to sort out. She had to be put on supplemental oxygen at night because her oxygen levels were dropping too low during sleep. Then, her oxygen levels started dropping even when she was awake. Her heart rate, which has famously dropped very low since she was a few months old, is now dropping lower than ever. A recent echo of her heart showed that her heart muscle appears to be weakening, but no one is sure why, or is willing to concede that this is the cause of her recent issues. Camille has also had GI problems again, after several good months where things had seemed to have settled down GI-wise. She has begun to have increased retching and increased drainage from her g-button site. She has also been choking on her own secretions, and now has to be suctioned frequently. In addition, she has had some unexplained swelling in her abdomen and other parts of her body.

For the time being, we are stuck in what I like to call the "hospital black hole". You come in, and you never know when you are going to get back out. It always seems like we will be here forever. I am struggling to fight the Negative Nancy and Debbie Downer parts of me who want to scream and cry and crawl into a hole and never come out.

That shoe that fit when I was 21 definitely does not fit me now. In fact, it will never fit again.

And if I allow myself to take a deep breath, I realize, that's okay. It is. Deep down, I don't want a fairy tale life because then it wouldn't be mine. A fairy tale life does not include a child with many health needs. It does not include hospital stays and suction machines and oxygen compressors. And while I would give anything for Camille to be healthy, she isn't. She is who she is, but she is mine. She is a part of my imperfect life, a life I am choosing everyday to see as blessed no matter what crazy or difficult thing might be happening.

And I am hoping, and praying desperately, that as I make this conscious choice to see my life in this manner, I will one day wake up to this instead.

"Maggie, this is your life. And isn't it just so good. In fact, it's pretty much as good as it gets."

Ketchup Day

When I was in elementary school, Fridays would often be called "catch up days". "Catch up days" were the days in which we were not given any new lessons, but instead got to "catch up" on any work on which we were behind. In my 8 year old mind, I always imagined a huge bottle of ketchup when I thought about Fridays. I was hearing "ketchup day" instead of "catch up day" even though I knew that "ketchup days" were for catching up. I thought of this a few months ago when my sweet Henry told me that he "loved me to pizzas". I have been telling him since he was born that I "love him to pieces", and I guess his sweet mind was imagining me loving him to pizzas. In any case, I definitely know it is time for a "ketchup day". Actually, it is way past time, but I won't go there.

I must admit that this attempt at a "ketchup day" is slightly overwhelming. So much has happened, but I'll try not to bore you with too many details. Camille is now seeing 9 specialists at Cooks: neurology, endocrinology, gastroenterology, opthamology, cardiology, surgery, pain management, pulmonology, and palliative care. She's added pain management, pulmonology and palliative care in the past few months. This does not include the genetics teams we see, or her pediatrician. It's quite insane, but it's kind of become normal to us. The other day, as I was coordinating all of her appointments, I had the thought that people might look at this insanity and think that I had Munchausen by Proxy Syndrome (the disorder in which caregivers exaggerate or fabricate illnesses for their child in order to gain attention or sympathy). I shared this thought with our pediatrician, who promptly waved me off and said, "Oh no. No one thinks that. I mean, if you had a normal looking child someone might think that, but..." He trailed off there. Yes, I know. Open mouth, insert foot. Since I have eaten my foot on so many occasions in the past, I let it slide. At least his comment took care of my worry about others thinking I have MBPS!

The big things that have happened in the past few months are as follows. In January, Camille had surgery to have a fundo placement (the stomach is wrapped around the esophagus to prevent vomiting). The surgery has been successful in preventing vomiting, which is good because her excessive vomiting had become extremely difficult. She also had a muscle biopsy done during the same hospital stay. The muscle biopsy was to check for mitochondrial disorders, which is the last thing that the various genetics teams can think of to test for right now. Camille has many symptoms of mitochondrial problems: failure to thrive, feeding problems, vomiting, developmental delay, white matter atrophy, etc. However, the Whitt Luck struck again, and the muscle biopsy was deemed useless. The sample got stuck in Indianapolis while on its way to New York to be tested. Therefore, it had thawed by the time it actually reached the lab in New York, and could not be used. We are now debating if we want to do another one or not. It's that constant tension we have about if it is worth putting Camille through yet another procedure just so we can possibly have an answer to her condition. It's such a tough call.

Also during this same January hospital stay, Camille had another MRI of her brain. It showed that there had been very little change since the last MRI 5 months before, which would be good news if her disease had not progressed much in the past few months. However, our neurologist believes that the reason we did not see much progression is because there was little progression left to be seen. He showed us her brain scans, which was really hard on us because we could then see what he was talking about. Camille now has very little white matter left in her brain. There was so much white matter atrophy from her first MRI (which was normal) to her second MRI that there is just now very little white matter left at all. We sat down and had a long talk with our neurologist about what all this means, particularly what it means for Camille's future. He said that he believes she has a white matter disease, but he is unsure which one. About 50% of white matter diseases do not have names at this time. He said that what he does know is that she has a genetic, progressive disease that is affecting her white matter. He is unsure what that means for her future, but he does not believe that she will make much developmental progress from here, and her life expectancy will likely be greatly shortened. This was obviously extremely hard to hear, even though we have pretty much heard it before. I think that our neurologist actually coming out and saying these things, coupled with actually seeing with our own eyes the progression of her disease on her brain scans, was very hard for us. We are really trying hard not to focus too much on any of that since no one really knows what will happen. We continue just to focus on Camille.

In focusing on Camille, we've come to the conclusion that our biggest desire for her is that she have as happy a life as possible. We want her to be comfortable, and we want her to be pain-free. Because Camille was still having increased irritability, and still seeming so uncomfortable nearly all of the time, our neurologist referred us to a pain management doctor at Cooks. She is absolutely wonderful, and has since been working with us on making sure Camille is more comfortable. Apparently, children with neurological conditions such as Camille's, often feel things differently due to their hyperactive nervous systems. In this way, Camille could be feeling intense pain for something that a typically-functioning child might not feel pain for. Camille is now on a high-powered pain medication, and it does seem to be helping. We feel such an immense amount of relief knowing that she is more comfortable. There is nothing worse than feeling like your child is living a life of such suffering.

Camille's neurologist and pain management doctors then recommended that we go ahead and begin palliative care for Camille. Palliative care is care for those with life-threatening conditions. We met with the team in February, and absolutely loved them as well. They were unbelievably kind and compassionate, and were dedicated to helping us give Camille the best care possible. We had to talk about many hard things at this appointment, such as hospice care in the future, but we are grateful that team will be there to help walk us through these difficult situations as they arise.

In recent weeks, Camille has battled a staph infection on her fundo incision site and pneumonia, but she has pulled through like a trooper, and has been feeling pretty good the past few days. We continue just to "keep on keeping on". (This is my go-to response when someone asks how we are doing. It may be a cliche, but it is the perfect way to describe our lives right now). And yes, some days it is harder than others to "keep on keeping on". Some days the multiple weekly doctors appointments, the multiple weekly therapy sessions, the 6 times per day medication administering, the g-tube feeds, the suctioning, the breathing treatments, the waking up in the night to your baby choking and struggling to breathe--sometimes that is all too much. But I am constantly reminding myself that Camille is worth all of this and more.

I'll leave you with a funny story. I was in HEB the other day, and was getting the usual stares from people. Then a woman who had been staring at us walked up and said, "Does she have what my son has?" I was very taken aback by this odd question, and immediately thought to myself, "I seriously doubt it, lady, considering that she apparently has what no one else in the world has!" Out loud I said, "Um..." The woman then went on to say "You know, the lazy eye! My son has one too!" At this point, I was laughing hysterically in my head and thinking, "Ha! That's actually one thing she doesn't have!" Out loud I said, "No she doesn't have one of those! Have a great day!"

Oh boy! The things people say! Sometimes it drives me crazy, but once again, Camille is worth it. No matter how many stares we get, or how many people give us the "I-feel-so-very-sorry-for-you" look, we don't mind. Again, Camille is worth it!

After all, we sure do love her to pizzas.

Well...

This poor neglected blog. It's pitiful, really. I am ashamed at how much time I have let pass since my last post. I know that I sort of left everyone hanging, which I didn't mean to do, but life continues to be a whirlwind for us without much time to compose a coherent blog post. That's why I have decided to create a Facebook Group for Camille. It will allow me to post short and quick updates about Camille to keep everyone updated. I will still update the blog when I can, though, and will post on the Facebook group when I do. If you want to join the Facebook group, search for "Praying for Camille Lynne" on Facebook and then click "Request to Join".

The biggest news we have had as of late is that all of the genetic tests they ran on Camille after her latest MRI came back normal. No really, I know this has shocked you to your core that Camille has had more normal test results, and that they still cannot find out what her underlying condition is. We met with the Cooks Genetics team again, and they continue to be stumped. Even with the latest information, which include the new MRI, and the fact that Camille has Anterior Polar Cataracts in each eye (long story that I will for sure tell one time), they still could not pinpoint which syndrome she has. After the latest round of tests--the Lysosomal Storage Disease Panel, the long chain fatty acid test, and the Congenital Rett Syndrome test--they are now down to one last thing to test for. It's a syndrome that we discovered in our own research early on, and have asked about from early on, but it is one that is more difficult to diagnose clinically, and more difficult to test for since only one lab in the country does the test. Camille has a lot of the characteristics of this syndrome, and I have thought from the very beginning that she resembled some of the kids who have it and whose pictures we have seen. However, even now that both the Cooks Genetics team and the TCH geneticist we saw in January (we consulted him after these latest findings) believe that we should test for this syndrome, and that it is the last thing that they can think of to test for right now, we have run into yet another roadblock. Supposedly private insurance does not like to pay for this test. So we are praying about possibly shelling out the money ourselves to go ahead and get it done, or waiting to see if we can find a way around that.

The other latest news is that Camille has been vomiting so much recently that she is going to have to have another scope of her stomach to try and find the source. Also, this may be too many gory details, but she has also been vomiting up old blood, which indicates that there may be some damage to her stomach lining. She will have the scope in 2 weeks up at Cooks (another long story, but we have switched back to seeing a GI doc up there). She will have to be put under general anesthesia for the procedure, which is always concerning, but she should not have to stay overnight. Please begin praying that this scope will show the cause of Camille's vomiting, and give us direction in what we should do. It is unbelievably difficult on our entire family for Camille to vomit like this. Not only is it horribly uncomfortable for her, it means that she loses calories that she so desperately needs. It also means things that may seem superficial to you, but when your child is vomiting 3-4 or sometimes more times per day, then these seemingly insignificant things become important. Things like tons of clean-up, uncontrollable amounts of laundry, and a 3-year-old little boy who has learned to make the most awful-sounding puking noises. He also uses his play cell phone to "call" our doctor, and will say something like this: "Doctor, yeah, uh, my baby sister is throwing up again. Yeah, she's puking." And did I mention that Henry wants to be a doctor for Halloween? Yes, and he wants Camille to be his patient. Hmmm, you know your little girl is throwing up too much when...

I'll update on FB and on here when I can, which is hopefully a lot more than recently! Your support is what helps us continue on, even amongst the puking and the testing and the procedures. Thank you.

Difficult Times

I can't tell you the number of times I tried to write this post and the words just weren't there. I still don't know if the right words will come even now, but I feel like I can't put this off any longer.

About 2 weeks ago, we received some difficult news. Camille's 24-hour EEG came back normal (meaning no seizures), but her MRI was abnormal. The neurologist called to tell us that her new MRI showed that things in Camille's brain were changing, or progressing. Her brain showed signs of cerebral atrophy (it is getting smaller instead of bigger) and dysmyelination (the myelin, or coating of the nerves, in her brain is not forming and functioning properly). He said that this indicates several things to him: one, it appears that she does have something progressive, which will get worse over time; two, the atrophy and dysmyelination are usually indicative of a leukodystrophy.

Leukodystrophies are just plain awful disorders. They are neurodegenerative, and associated with extremely short life expectancies. Our sweet Camille continues to be unique--the neurologist said that he did not recognize the pattern of her dysmyelination, which means he could not pinpoint which specific disorder she might have. Therefore, he and genetics consulted, and decided to do a Lysosomal Storage Panel, which is essentially one test that looks at many different disorders at one time. We had the blood drawn for the panel last week, and should hear something by the end of this month.

I feel such a strange combination of emotions right now. In one sense, I am relieved to know something and to be very close to finally knowing what is going on with our little girl. Then I battle the guilt that comes along with that sense of relief. Why should anything about this news be a relief? It's horrible and terrible and heartbreaking. I once said that not knowing was worse than anything, but is it worse than this? Wouldn't it be better to not know this?

I feel such a profound sadness that I can't even begin to describe. It makes my chest hurt, and it makes me feel like there are permanent tears stuck in my eyes, ready to overflow at any moment. It makes me question my whole belief system, however cliche that might be. It makes me wonder how I am going to watch my child battle a progressive disease, how I am going to watch her deteriorate, and still keep my faith and sanity.

We ultimately do not know anything definitive at this point, and I am holding onto that. And what we do know remains true. We know we love Camille. And we know we love a God of goodness and mercy. Whatever we find out, whatever happens from this point on, this will not change.

Thank you for your continued prayers and support.

The Highlights

And once again, too much time has gone between posts. Even after my Memorial Day resolution and all. So sorry. We have been busy, however, and I figured I would write a post of mainly updates--the highlights, I guess you could say.

First, we are (yet again) in the hospital here in Waco. Camille started vomiting last week, and it just kept getting worse. She was dehydrated yesterday, so our pediatrician admitted her. And before you ask, no, we have no idea what brought all of this on. As usual, many tests have been run, and nothing stands out as the cause yet. Her blood work was little off, and her cortisol was low, but nothing too major. We are hoping she can go home late tonight or tomorrow. I'm afraid that I might have to do my beg/threaten/almost-get-myself-arrested-for-all-the-harassment routine again--you know, the one I whip out every time Camille is in the hospital and I feel like I am going to die if we have to stay one more minute?

And you know what the real kicker is? We get to do this all again next week. Yes, next Wednesday, we are scheduled to be admitted to Cooks for a 24-hour EEG and a new MRI. We're just a bunch of hospital hoppers, that's what we are. We like to switch things up at our house. Hillcrest in Waco one week, Cooks in Fort Worth the next. Why not, right? Oh, and it's gonna be fun times next week for sure. Did I mention that they are going to video Camille the whole time she is admitted so that they can try to match up her abnormal movement pattern and her brain activity? Did you catch that? Everything that Camille or I do or say for 24 hours is going to be recorded. I feel sorry for whoever has to watch that video. Talk about some bad reality TV. Camille and her mama do not like being cooped up in the hospital. Pray for us, please.

In other news, Camille has also had several apnea episodes in the past few weeks. I had mentioned before that she was now on an apnea monitor, but that she hadn't had any episodes. Well, I spoke too soon, as usual, and she has now had several. I realized after I posted this a while back that some of you might be wondering what the big deal about apnea is. A lot of people get apnea, right? Yes, apnea is common in newborns born prematurely and adults. But it is not common in a child Camille's age. Even more than that, they believe she is having Central Apnea, which is even less common and not easily treatable. Central Apnea means that there is a neurological cause--i.e. something in Camille's brain is not firing correctly and failing to remind her to breathe. To be considered an apnea episode, she has to not breathe for at least 20 consecutive seconds, which completely freaks me out when I think about her doing that in her sleep. Her heart rate is also continuing to drop repeatedly, but this is not new. It is, however, dropping lower than it was before, which was the main concern that her cardiologist had the last time we saw him. We will see him again in a couple of weeks, but I'm really not hopeful about any more answers in that department. I am still hoping that this is just a little quirk--abnormal for everyone else, but normal for Camille.

Speaking of "normal", despite all of these new developments, we have been enjoying our rather "normal" summer. Henry and Camille have enjoyed being outside, going to the splash parks, meeting friends at the museum, etc. I want so desperately for our kids to have as "normal" of a life as possible, in between all of the tube feedings and therapy sessions and doctors appointments and hospitalizations. And most of the time, I feel like our lives are completely "normal".

Then something will happen like Henry dragging out our air pump and pretending to hook it up to Camille to "feed" her. After all, one pump is the same as another, right? It's so crazy how "normal" tube feeding has become to all of us when I'm sure it is still so foreign to everyone else.

Or my most recent favorite--the stares and questions we are starting to get. I will be out in public with Camille, thinking that we look just like a regular mama and baby, but apparently we don't. I guess that as Camille gets older, it is becoming more apparent that she is not the "same" as other kids her age. For example, take this recent conversation we had at the splash park.

Woman (approaches me out of the blue and asks): How old is your baby?
Me: She just turned a year old.
Woman (confused): Oh. Is she (long pause while searching for the correct word to use) okay?
Me: (Totally wanting to just say "Why yes! Whatever do you mean?") Well, she has some special needs. No one is really sure what she has, though.

The conversation went on, and it really didn't bother me, but it just made me realize that however "normal" I think we are, I guess we're not.

But that's okay with me too. Who needs normal anyway?

Lately

Lately, our little girl turned the big ONE. It was so hard to believe--in some ways, it seems like she was just born, but in other ways, it seems like this has been the longest year of our lives. I told Camille on her birthday morning that she has seen more doctors and had more tests and treatments in her one year than most people do their whole lives. She smiled and grunted at me in response. We celebrated the actual big day, which was a Wednesday, by taking Camille down to the Scott and White NICU. When Camille was in the NICU, I would see families bringing their children back to visit, and I would think to myself that I would never do such a thing. If I ever got Camille out--and most days it felt like that would never happen--then we were hitting the road and never looking back. But as Camille's birthday approached, I began to want to go back to the NICU, not necessarily to see anyone in particular or do anything in particular, but just to give myself a reminder of how far Camille has come. So we went down, took some pictures (her neonatologist was unfortunately out on vacation and so we didn't get to see her), and had a nice lunch at a little restaurant in Temple. Later, we all went to the Waco Water Park, and Camille loved getting to splash (or rather, be splashed by her brother) in the water. Then, we finished up the birthday week with a very warm cookout in the park. We could have called it the Camille Lynne Sweat Fest instead. Who knew it would already be close to 100 degrees in Waco at the beginning of June? We were so grateful for all of the friends and family who came out and sweat, I mean celebrated, with us.

Lately, things have been a little more troublesome health-wise for Camille. Her jerky movements have increased significantly in the past month, which led us to have to take her to see her neurologist again sooner than we had planned. After seeing her and her movements now, he was finally able to put a name to them. She has what's called Myoclonus, which basically means uncontrollable jerky muscle movements. When he said this name, I latched on to it like a rabid dog. I started fumbling around for a pen, and asked him repeatedly to spell it so that I could make sure I had it written down correctly. He looked at me strangely, and said, "Well, Myoclonus only describes her abnormal movements, not her entire condition." (Our neurologist has been wonderful, by the way, about encouraging us to find an overall diagnosis for Camille, and has said that he thought we are right to seek out multiple opinions from geneticists until we find our answer). I told him that I was just so excited to have a name for something. I can finally tell people something other than, "And she has these weird movement things that no one can name." Plus, I can go enter something else into my database--this little tidbit, however, I kept to myself and did not share with the neurologist. The thing about Myoclonus, though, is that it is usually related to epilepsy. The neurologist said that it is related to seizures in almost every child he has ever seen with it, but in Camille's case, he doesn't think it is. He's not sure what is causing it to happen, and what is causing it to get worse, other than it is something occurring in her brain. So, he is going to treat it with a new medication, which he said would hopefully lessen it, not take it away completely. And then he is also going to do a new MRI and a 24 hour EEG, to see if they can see more of what is going on in Camille's brain now that she is bigger and older. The other new medical issue is that Camille has had a blue face and lips when I have gone to wake her up from a nap twice now in the past 2 weeks. Therefore, she is now also on an apnea monitor at night. So far, so good, and the monitor has not alarmed indicating any apnea at all. Not so good, however, that we don't know what those spells are from, if they are not due to apnea, and that we have yet another set of tubes and wires to hook up to our baby every night.

So lately, I have been doing too much pondering. Too much worrying. Too much looking ahead. Too much feeling sorry for myself. What are we going to do if all of this continues? Our neurologist, who is the most wonderful person in the world, said very kindly when talking about Camille's Myoclonus that it was something that would never be cured, but that we could hopefully lessen it with treatment. He said that the goal was to just make this a livable situation for us. Right now, it's truly not. Her irritability has increased with her myoclonic movements. And her movements have made it hard to do almost anything. If you can imagine having these constant, uncontrollable jerks happening all over your body, then you can imagine what Camille is feeling all day everyday right now. It's miserable. It affects sleeping, eating, any type of motor activity. We can sometimes barely hold Camille when it gets really bad.

And the fact that this has all gotten worse right around Camille's first birthday has been really hard. I try not to, but I keep thinking about all that Henry was doing around his first birthday, and my heart breaks. He was doing things at one year that I'm not sure she'll ever do in her life time. And the way she has been so miserable and unhappy these past few weeks makes me feel even worse. We had several really good months where she was so happy and hardly cried at all. These past few weeks have been reminiscent of her early days where she cried all day long. I just keep thinking that this is not the life I wanted for my child.

Lately, I am reminded of two things that comfort me. One is the best advice that I think anyone could give the parent of a sick or special needs child. These words came from my Aunt Jena the day after Camille was born. "Take it one day at a time." I simply can't look ahead, can't imagine what our lives will be like if what is happening now continues. It's too overwhelming. All I can do is get through this one day. That's doable. The second is 5 words I received in a text message from a friend shortly after Camille was born. "God will not leave you." That's all it said, those 5 words. And perhaps those are the greatest words of comfort there are.

So it's been a while...

Has it really been two months since I last posted? I wish I had some grand explanation for why that is. I really don't. Things have actually been quite--dare I say?--normal for us these past two months. I think I got so caught up trying to keep us in our "normal" state that I put things like blogging aside. I guess you could say I was in full "prevent a crisis" mode. I kept thinking that since we hadn't had a true crisis in a while, we were due for one soon, and I was busy trying to keep that from happening.

That sounds like a good explanation, right?

Let's go with that one then.

And not the fact that I have been spending way too much time watching back episodes of Bones, and reading blogs about Bones, and Facebooking friends about Bones. Did you know that there is this whole online Bones community made up of thousands of Bones-crazed people? They have biggest fan awards and everything. And no, I have not joined this community. I'm more of a wannabe, a lurker, if you will.

Or there's also the fact that I kept realizing that it had been so long since I last blogged that I had way too much to say, so much in fact that I really didn't know how to say it in a comprehensible manner, and so many times I would sit down at the computer and type up a rambling post that I would promptly delete and, well, go back to checking out the latest behind-the-scenes photos for Bones.

See, the first explanation is best.

I am, however, prepared to make a Memorial Day resolution to you all that I will try my very best from now on to post at least twice a week about my adorable children.

I must confess, though, that I feel confident in making such a resolution only because Bones is now over for the summer. The fall might be a different story. Don't say I didn't warn you.

Onto what you really want to hear.

Camille has been doing really well. She has become much more social in recent months. I can usually make her laugh this great little grunting laugh by tickling her tummy or neck, or by saying "pop!" For some reason, she thinks the word "pop" is hilarious. She is still not sitting independently yet, but can sit for a few seconds unassisted. She can also get up on her hands and knees in the crawling position for a few seconds as well. We can tell that she wants to crawl so badly, most likely to chase around that crazy brother of hers, but she just isn't there yet. We feel like what is most preventing her most from being able to sit and crawl is her abnormal movement pattern (some call it ataxia, others dystonia). She has very jerky, puppet like movements, and this obviously causes great issues in balance and coordination. Jason and I have felt recently that these movements have gotten worse, and they will likely do another MRI of Camille's brain in July to see if something has changed that would be causing this. These movements also make it hard for Camille to sleep and eat.

Ah, sleeping and eating. The two biggies for our little girl. Camille is sleeping very well right now, and has been for the past two months. We are so thankful for this! She will usually sleep 11 to 12 hours at night, sometimes straight through without a peep, sometimes waking up but putting herself back to sleep after a few minutes of "talking". I always wonder what she is saying in those moments. We hear her on the monitor having some sort of animated conversation with someone, most likely her light-up seahorse who she adores, and then after a few minutes, she'll have put herself back to sleep.

As for eating, I'm really not too sure what to say about that at this point. About a month ago, we asked our GI if we could try just giving Camille her 12 hour night feed through her button, and then feed her only orally during the day to see if we could get her to eat more orally this way. Before, we had been doing the continuous night feed through the button plus several other button feedings during the day, with some oral feeding in between. Our hope was that Camille would be hungrier, and therefore eat more orally, if we just did oral feeding during the day. Well, let's just say that some days are better than others. Some days I can get her to eat an entire jar of baby food at one sitting, other days she will gag on the first bite and I can hardly get anything down. It's a work in progress, a work that I feel is so valuable. I want my little girl to eat. A post all on eating is coming your way. I've been composing it in my head for quite some time now. Get excited.

As for medical issues, the only really new thing is that Camille is taking her steroid for her CAH, and that has gone well.

Oh, and we saw a new geneticist.

Did that sound like an afterthought? I guess it kind of is. I decided shortly after Camille's hormone issues were settled that now that she was older and we had some of her symptoms figured out, that it might be an appropriate time to see a new geneticist. A fresh pair of eyes to evaluate her now that she was presenting us with more "clues" to her condition. I decided to make her an appointment to see a geneticist in Austin who is in the same group with her new GI. We have loved this group, and so I thought I would give it a shot. I had also heard from others that this geneticist was very "thorough." That sounds good, right?

After our appointment on Wednesday, I would say that I would agree with the "thorough" assessment. I also found that this geneticist, like our GI, was very "nice". But, nice no longer cuts it for me. I like for Camille's doctors to be "nice". I like them to be kind and compassionate and understanding. That's a real bonus for me. But I would give up all of those things in a heartbeat if I had a doctor with zero bed-side manner, but the drive and determination to figure out what is going on with my child. Bring on Dr. House. I can handle a little saltiness, as long as you throw in a lot of stubbornness and determination too.

This geneticist was not our Dr. House. She was nice, she was compassionate, she probably knew her stuff, but she had no idea what Camille had, and what's worse, she didn't seem to have any plans to figure it out. She took down all of Camille's history in a very "thorough" manner; stated how Camille had already seen several very good geneticists; and then, of course, gave us the whole spiel about how sometimes they never find out what a child has, and so we might want to consider accepting that as our reality.

I was okay on Wednesday, immediately following our appointment. It didn't hit me until Thursday morning how frustrated I was about it. I got so angry, probably more angry than I have been in a long time. I called a friend and literally shouted into the phone, "I'm so sick of these doctors! I'm sick of their 'I don't knows'! I am sick of them shrugging their shoulders at me, saying that they are very sorry but they have no idea what is going on with my daughter, and then expecting that to be okay! In what other stinking profession does someone get to say 'I don't know, and I don't have any plans to find out for you' and get away with it?"

Thank goodness for good friends who will listen to a good old fashioned rant.

But the more I thought about it, the more I realized that even though most of the doctors we have seen have not known what Camille has, and not seemed committed to figuring it out, what bothered me most about this particular geneticist is that she seemed surprised that I was still searching after receiving several "I don't know's". Is it that other parents get a "Wow, your child has something, but I sure don't know what it is!" and they're okay with that? They just take that and move on? Really? I can't imagine that anyone in my place would accept an "I don't know" and not continue to look for the answer.

Yes, I want to know what Camille has in order to know what her future will hold. Yes, I want to know what Camille has in order to be able to possibly seek out other families with children with the same diagnosis. Yes, I want to know what Camille has so that I can know if Henry runs the risk of passing this onto his children.

But most of all, I want to know what Camille has because I simply want to know who she is. Whatever she has is a big part of who she is. What better way to give your child, who has suffered so much, some sense of dignity than to figure out why she is the way that she is.

And so I guess I'll keep searching. I think it's only human to do so. And I think it's the greatest gift I can give my daughter, the gift of knowing who she is.

A Diagnosis

Well, we have a diagnosis. Sort of. I am thinking of it as a partial diagnosis. As in part 1 of 2 or maybe 3. I should explain.

You see, it is now believed that Camille has at least two genetic conditions. The syndrome, or condition, that is causing what I consider to be the majority of her issues, is still unknown or undiagnosed.

However, we now know what is causing her endocrine/hormone problems. She has been diagnosed with a rare form of non-classical Congenital Adrenal Hyperplasia (CAH), the 3-beta form. This form of CAH is so rare, that of the people who have CAH, only 1% of them have this form. It is inherited genetically in an autosomal recessive pattern, meaning Jason and I are more than likely each carriers for it.

Or maybe not.

I should explain again.

Here is where it gets tricky. You see, this is a very rare condition. And then, whatever else Camille has that accounts for all of her other issues (small for gestational age, small head, failure to thrive, eating difficulties, developmental delay) is also rare, so rare in fact that it cannot even be determined at this time. What are the chances of her inheriting two very rare conditions from me and Jason? In other words, what are the chances of Jason and I both being carriers of two of the same rare conditions and then meeting up and getting married and having children?

Basically slim to none.

And so, what the geneticist in Houston proposed might have happened was this. We all inherit two copies of each of the 23 chromosomes in our body, one copy from each parent. Each chromosome is made up of thousands of genes. Each of us are carriers for at least 6, probably more like 10 or more, genetic syndromes (mutations on those genes). Most of the time, parents are not carriers for the same syndromes, since there are thousands. Even if they are, then there is still only a 25% chance at each pregnancy that the baby would inherit the syndrome, depending on if the baby inherited a mutated copy of the gene from each parent.

However, the geneticists believe that what may have happened with Camille is that she inherited two copies of one of the chromosomes from the same parent, either me or Jason, instead of inheriting one copy from each parent. Therefore, if she inherited two chromosomes from me or two chromosomes from Jason, basically a duplicated chromosome, then she would have a 100% chance of getting whatever that parent was a carrier for along that chromosome because both chromosomes would definitely have the mutated genes.

Have I lost you yet?

So, the good news about having a diagnosis of 3-beta CAH is that we might be able to use it to determine what the other syndrome is. If they now know that Camille has CAH, and what chromosome that form of CAH is located on, then they can look at what other syndromes are also on that chromosome, and see if any of them match Camille's other "symptoms".

The bad news? This form of CAH, as with most forms of CAH, can be life-threatening if not treated properly. Let me explain a little about what CAH is. You can also google it, but you won't find much about the 3-beta form, and you know that's coming from the Google Queen.

In a nutshell, what happens in all forms of CAH is that the adrenal glands (located above the kidneys) do not produce enough cortisol. "Cortisol is a steroid produced by the adrenal glands that our bodies need to: (1) deal with physical and emotional stress, and (2) maintain adequate energy supply and blood sugar levels" (caresfoundation.org). Deficiency in cortisol also leads to overproduction of other hormones, which we saw with Camille in the form of DHEA overproduction. This overproduction of hormones leads to the overt symptoms of CAH, like the signs of early puberty that we saw with Camille. Babies with CAH can also have ambiguous genitalia from the overproduction of these hormones, which thankfully Camille does not have.

The main issue now is that because Camille's adrenal glands do not produce enough cortisol, she could suffer from adrenal crisis, especially when her body is stressed (i.e. in times of illness). Therefore, we are going to have to start treating her with a steroid. She will take a regular maintenance dose twice a day, and then when she is sick, she will take a stress dose, which is basically an increased dose. If she were ever to get really sick, in particular, vomiting so much that she couldn't keep her medicine down, then we would have to inject her with a dose. Jason and I are supposed to go up to Cooks next week to be taught how to inject Camille should this ever happen.

Could it get any more fun than that?

And so, for the million dollar question, how are we taking all of this? For some reason, I am taking it very hard. First, it's just scary to me to hear the words "life-threatening". And, it's also scary that we are the ones who decide when to do the stress dose, or when to do the injected dose. What if we screw up and do it when it is unnecessary, or worse, what if we screw up and don't do it when we should have and she goes into adrenal crisis? Talk about pressure!

And here's the other thing that's driving me crazy. This diagnosis doesn't even account for all of the other huge stuff Camille has going on! It's not even what anyone would consider her "main" diagnosis! And so we have this new condition, which can be life-threatening, which requires more medication and more regular appointments and blood draws every few weeks---and it doesn't even explain the half of it! Or even a fourth of it!

I am really trying hard to keep things in perspective here. One, I'm thankful that this is treatable. Two, I'm so relieved that she doesn't have an adrenal or ovarian tumor, the other option of what could have been causing the hormone issues. Three, I am glad that we at least know something about what is going on in Camille's little body.

But that doesn't stop that little niggle of irritation from occurring, where I think over and over in my head, "REALLY? REALLY?" My baby girl has at least two genetic conditions that are causing her all of these problems, when most babies have none? And all of this occurred because of something that was out of our control, a random mutation that happened before I even knew I was pregnant, a "fluke" or "round of bad luck"? Those thoughts just make me want to scream and pull all my hair out, or at least have several really loaded margaritas.

But as I have tried to do from the very beginning, and believe me, I still fail miserably at it every day, I am still trying to see the goodness in this. There is certainly no goodness in any of these "diagnoses", but there is goodness in Camille. I can't believe my little girl is only 2 months away from her 1st birthday. She has become a really easy baby (everyone stop reading this now and knock on some wood nearby). She is happy nearly all of the time now, smiling, laughing, squealing, talking. She is a true joy. And we just love her to pieces.

She could have 20 genetic conditions, and it wouldn't change that.

Luck of the Irish?

Not sure if it is the luck of the Irish, but we are so happy to report that Camille has slept through the night with only one middle-of-the-night-wake-up for over 2 weeks now! If you have seen us recently, you may have noticed that we are a lot happier and looking a tad less like dead people walking. Let's be honest here--we still have Mr. Action and Miss High-Maintenance keeping us very busy during the day, so we still don't look great. But looking a little less like death-warmed-over is good enough for us. It's amazing what sleep can do!

And so what really caused this new change in luck? I'm going with Camille's new formula. Her new gastro had us switch her formula from Elecare to a regular ol' Similac. Wow, regular formula! That you can buy in a regular store! And not sell body parts in order to pay for it! And it apparently helps your baby sleep through the night! Greatness! Apparently, the gastro thought that the Elecare could have been "dumping" out of Camille's stomach too fast, causing pain and discomfort. He was hoping this change would help with irritability and sleep. So, we switched Camille to Similac, and the night that the transition was complete was the first night that she slept all night. Ten whole hours instead of her regular two. Again, greatness! I told our Gastro as much on Friday when we saw him again to follow-up on this new change. I gushed about how appreciative we were. I really wanted to tell him that he was a genius and then kiss his feet, but I held myself back. Again, it's that great restraint I have coming into play.

So maybe it was the formula, maybe it was the start of Spring, maybe it was that Camille has not been sick for over 2 weeks, or maybe it was that so many of you have been praying for this specific thing for us. We know that is the most likely reason!

Even so, it wouldn't hurt to have a little bit of Irish luck. The Whitts will take all of the good luck that comes our way! And so, in typical Henry and Camille fashion...

Happy


Saint


Patrick's

Day!

Yes

In case you haven't already heard...

Yes, we are home from the hospital as of last Thursday a week ago, and yes, Camille is over her pneumonia and feeling better than she has in a long time. And yes, I did have to beg and harass our pediatrician to let us go home when we did, but oh yes, it was worth it.

And yes, Jason did get the flu shortly after we got home from the hospital, and yes, we do sometimes think we are cursed. And yes, Jason is now over the flu, and yes, we are hoping that sickness has fled the Whitt house for a long, long while.

And yes, Jason and I did attend the Baylor vs. Texas men's basketball game on Saturday, and yes, the victory was so very sweet just as it always is against the Longhorns. And yes, I did embarrass Jason thoroughly, and yes, although he did not have to pull me down by my clothing this time, he did have to remind me that there were children sitting nearby. And yes, one of those children did walk by at half-time and stick his 'horns sign in my face, and yes, I did refrain from sticking my tongue out at him in response.

And yes, Henry and Camille did stay with Nani and Papi during the game, and yes, they did have a blast. And yes, because Camille did not attend the game, it does mean that she will have to find another opportunity to wear her new Baylor cheerleader outfit, and yes, when she does in fact wear it, I will post pictures. I promise.

And yes, Camille did see another endocrinologist on Friday, and yes, he was a huge improvement over the last one. And yes, he too was thoroughly baffled by Camille, and yes, he too had no idea what could be causing all of her hormone issues. And yes, he did run more tests, and yes, those tests will take 2-3 weeks to get back. And yes, that is very annoying.

And yes, not surprisingly, all of Camille's latest GI tests did come back normal (read: unhelpful), and yes, that is also very annoying.

And yes, last but not least, I am feeling much better than I was when I wrote my last post, and yes, that probably has a lot to do with the fact that you all continue to lift us up with your amazing support. And yes, although I have said this a thousand times before, thank you.

Not Just the Facts

So much to tell you. So much has happened. So many thoughts and feelings swirling around in my head.

I'll start with the facts...

The Facts:

So as most of you know, either through Facebook or my mother ;), Camille was admitted to the hospital on Monday with pneumonia. This latest round of sickness all started last Wednesday evening when Camille started to run a very high fever. By Thursday morning, her fever was up to 104, so of course, I took her into her pediatrician. He did a flu test and a strep test, both of which were negative. Then he took a chest x-ray. The x-ray showed some pneumonia in the bottom of one of Camille's lungs, and so he gave her shot of antibiotics, and sent us home on yet another antibiotic and breathing treatments. Her fever was down by the next day, and we were doing breathing treatments round the clock, so we thought she was getting better. Later that weekend, she started having trouble breathing. She was gasping and gagging, and her breathing was just incredibly labored. We took her into an Urgent Care center, and to the ER, but her oxygen saturations were still in the bottom of the normal range, and so we thought she would be fine in a few days. By Monday, though, we took her into our pediatrician's office because in a matter of hours, her breathing had gotten significantly worse. I heard our pediatrician outside the exam room saying, "Oh Camille, Camille. I should have known you would be back to see me," in his usual fun, joking tone. Then he walked in the door, took one look at Camille, and said that he had to admit her to the hospital. Then he opened back up the door, and shouted at a nurse to bring him a nebulizer NOW. It was a little disconcerting. Okay, it was a lot disconcerting.

So, we're here. At yet another hospital. Hooked up to more monitors. Answering more medical history questions. Running more tests. Telling Camille's story to more medical people. The pneumonia is now in both lungs. Camille has been needing to be on oxygen because her oxygen saturations are too low without it. She is receiving breathing treatments every 3 hours, and "patting" treatments every 6 hours. What in the heck are "patting" treatments, you ask? Well, those are Camille's personal favorites. That is where a Respiratory Therapist beats (I mean, pats) my sweet little girl firmly on the back to break up the mucous in her chest. It's fun (read: torture) for both baby and Mommy.

In the midst of all this craziness, Camille has also had a new battery of GI tests run because we saw a new GI doctor last week. We had just felt like something was being missed GI-wise, and so we wanted to get a second opinion. Our pediatrician referred us to a GI doc in Round Rock, and we really liked him. He was very understanding and thorough, and we really felt like he was committed to trying to find out why Camille has been having so many GI problems. My favorite part about him? He asked to hold Camille. He wanted to hold her and carry her around and show her off to all of the nurses. He sure knew the way to this Mom's heart. No other doctor that we have seen has asked to hold Camille. So anyway, he ordered a ton of tests (upper GI, lower GI and ultrasounds), and we are getting them done while we are in the hospital.


And now for the good stuff...

The Commentary:

1. The medical personnel here at this hospital have been very nice and for the most part, very helpful. But they have seriously acted completely dismayed by Camille. They have acted like they have never seen a G-button before or heard of a child with a genetic syndrome. I think one radiologist used the word "fascinating". Okay, so that's not necessarily a bad word to use---when it's used to describe a rare kind of plant or animal! But not my baby!

2. Respiratory Therapists are a really nosy bunch. Seriously people. Just come in and do your breathing treatments and your "patting". You don't have to know every little thing about my child to do that. I have felt like I was being interrogated on a witness stand during almost every RT visit. Maybe they just feel the need make small talk during the breathing treatments. The quiet hum of the nebulizer works for me, but maybe it's just gotten too old for them. Or maybe all of those steroid fumes are starting to go to their heads. Can I claim that for why I've been so loopy lately?

3. Or maybe my loopiness is from total sleep deprivation. I now see why that's used as a torture technique. It is pure torture. And it's starting to take its toll. I recently rubbed toothpaste all over my hands, thinking it was hand lotion. I have accidentally gotten out and left my car running in two different parking lots on two different occasions in the past week. I forgot to send Henry to school the other day with a coat, and he had to wear one from "lost and found" when his class went out on the playground. Ouch. And just today I dumped a full bottle of formula all over the floor because I tried to pour it into a closed feeding bag, AND I walked out of a radiation room after one of Camille's tests still wearing my heavy shielding apron so that the tech had to chase me down to retrieve it. There's no telling how long I would have worn that thing without realizing it!

4. So a nurse aide walked into Camille's room today and said that she came to bathe Camille. She filled a tub with water and soap, and then said to me, "Okay, here, Mom. Do you want to bathe her?" I looked at her and seriously said, "No, not necessarily." The old me--the me that actually got sleep and wasn't so unbelievably beat down--would have worried and worried that saying that made me look like a horrible mom. But the new me--the totally tired, weary-of-it all, almost-completely-beat-down me--just thought to myself, "Heck no, lady, not if you're capable and willing. I am so freaking tired. You are more than welcome to bathe her while I sit down for the only five minutes that I'll get to all day!" And I did just that. And only felt slightly guilty about it.

5. I was actually mistaken for a doctor today. No, it's not because I was looking so professional and doctor-ish in my Baylor t-shirt, sweat pants, limp hair and dark-circled eyes. It was because of my vast medical knowledge. Yup, that's really it. A radiologist was asking me about some of Camille's history today, and as I was answering his questions, I realized he was looking at me funny. He then asked me, "Are you a doctor?" Uh, no. "Are you in the medical profession then?" Uh, no again. "Oh, it just sounds like you know all of this medical stuff really well." I guess that's what happens when you have spent the last nine months either in the hospital, or the doctor's office, or scouring medical sites on the Internet. I should have answered that I actually do have my M.D. in Genetics from the World Wide Web, but I wasn't quick enough to come up with that clever of a reply. Must be that whole sleep deprivation thing again.

6. I miss my little boy. Henry continues to be a real trooper through all of this. He is currently staying with his Nani and Papi in Fort Worth, which he thinks is way better than being at Mommy and Daddy's house anyway. But I can barely stand it. I miss his little voice chattering away a mile a minute. I miss the way he is so snuggly after his naps. I miss his constant singing and question-asking. And okay, I even miss all of his little shenanigans. The latest adorable thing he is doing? He will start counting, and forget a number, but instead of just skipping it, he will replace it with the word "number". For instance, he'll say, "One, two, three, four, five, number, number, eight, nine, ten." Love it!

7. The people who designed this hospital, and for that matter, Scott and White hospital, did not have a special needs baby. How do I know this, you ask? Well, simply because in both hospitals, you have to walk through the labor and delivery waiting area in order to get to the NICU and pediatric wings. What's the big deal about that, you ask? Well, if you have a special needs baby, or a chronically sick baby, it is so darn hard to have to walk through the area where everyone is anxiously awaiting their perfect little bundles of joy in order to see your baby who is struggling. I almost want to throw up every time I have to do that. Maybe I'm just bitter. Okay, probably I am. But I don't think there is anything more difficult than seeing all of these other people having healthy babies when yours is not.

8. And I guess that brings me to say that I am honestly struggling right now. This latest hospital stay has been more difficult than anything else so far, and I'm not really sure why. I think it might be because I keep having this feeling that this is just a preview of our future, a small glimpse of what our lives are going to be like from now on, and I just don't know if I can do it. This is the first time since Camille was just born that I have seriously thought over and over again, "I can't do this. I can't do this. I can't do this." I just don't know if I can do repeated hospital stays and constant medical issues. And I don't know how much longer we can keep up this crazy pace, and still keep our sanity. I am tired; I am stressed; I am weary; I am sad. This just was not what I imagined my life to be like, and it seems to just keep getting worse. And so, I have been praying. One simple prayer. "God, have mercy." That's it. I started praying it at about 4:00 a.m. our first night in the hospital when Camille was awake and screaming inconsolably. I repeated it over and over in my head. And I guess I will just keep praying that, and hoping that I can begin to feel God's mercy in new ways, even in the midst of all of this.

Valentine

Camille has something she would like to ask you...

" Will

You

Be



My Valentine?"

Oh wait! Never mind! She forgot! She already has a Valentine...

And he's as sweet as this cupcake he's eating.





Yep, super sweet Valentines for sure!

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.