Wednesday, September 29, 2010

8 Years, 10 Months.

8 years, 10 months.

Wondering what the significance of that number is?

It's not my age {though I might possibly act that age on occasion}.
It's not a birthday.
It's not our anniversary.

It's how old Mercy's bones are.

{double take}

What? But she's only *counting years on fingers* 6 years and 1 month old. And 10 days, if you want to get technical. How is that possible?

Because Mercy has something called Congenital Adrenal Hyperplasia. Ever heard of it? We hadn't, until about two weeks ago when the pediatric endocrinologist called to tell us that M's bloodwork had come in and that's what she has.

Need a bit of a rewind, don't we.

Anyone who's met Mercy has noticed how tall she is. Let's be real, she's a giant for her age. The tallest in her class, despite being the youngest. People don't expect it when we say that she just turned 6 last month. She also had some other things going on that I'm just not really okay with putting out there in cyberspace, but suffice it to say that finally I had enough and after talking with a good friend about my concerns, I was finally validated into feeling that I wasn't being the paranoid momma and that we needed to have a good talk with our pediatrician. Our pediatrician rocks. Really, I absolutely adore him. He remembers things that are going on with our kids {or at least bothers to write it on their charts and then read their charts before our appointments} and most of all, he TAKES ME SERIOUSLY. That's my biggest thing, after our last pediatrician blew me off about my concerns with Mercy's lack of speech at 2 years and made me feel like a worrywart. Thanks again Dr. L. So glad we're not with you anymore. Anyways. We went to the office at the beginning of June and I started telling Dr. Smith about my concerns with M's growth and other stuff, and began to feel like I was being overly paranoid. But he immediately did a physical on her and agreed with me that something wasn't right. WHAT?! I wasn't being paranoid? Dr. Smith wrote me a referral right there to go see the pediatric endocrinologist department at UMC in Tucson, and told me that while he didn't know exactly what was going on, we needed to get this checked out as soon as we could. Doctor crush, right there.

Being that they're the only pediatric endocrinologists in southern Arizona, our appointment was at the end of August. The office was great, the nurses very sweet, and Dr. Wheeler was awesome. He asked us for every concern that we could think of, even if it was small. He wrote everything down that we told him. Her height, her starting to get acne, her other things. He noted that she was diagnosed with a moderate to severe speech and social delay, but that she'd surpassed them and was excelling in school now. Just everything possible we could think of, he noted it. He did a thorough exam on her, and gave us a list of tests he wanted run. He wanted a bone scan and blood tests to the umpteenth. He explained that he didn't know what was going on, but that the bone scan would tell us the age of her bones, and the blood tests would tell us what was out of sync in her body. Very kind, very caring and very serious about finding it out. Mercy was a trooper, an absolute trooper. When we went to get her blood taken I got mine done at the same time {for the pregnancy} so that she would know what was going on beforehand. She didn't even flinch when the tech put the needle in her arm, all she said was "that hurt". They took 6 vials that day, just to give you a guess at how many tests the doctor had ordered. Six vials from my 6 year old. She thought the bone scan was pretty cool, even though they didn't show it to her then.

Then, about two weeks ago Dr. Wheeler called me and told me that the tests had come back, she has something called Congenital Adrenal Hyperplasia and was not producing enough {or any, I can't remember exactly what he said as I was trying to process it all} cortisol so we needed to get her started on taking hydrocortisone pills. Basically she lacks an enzyme needed by the adrenal gland to make the hormones cortisol and aldosterone. Without those hormones, her body produces more androgen, which is a type of male sex hormone. If you really want to know more, I found the CARES Foundation to really be helpful but not overwhelming.

So what does this mean? She'll take hydrocortisone for the rest of her life, but CAH patients have normal lives for the most part as long as they keep up on their meds and are watched by their endocrinologists. This is not something she'll outgrow or be cured of. She'll most likely be on the shorter side of normal height due to the rapid growth early in childhood {which is why her bones are older than she is}, she'll stop growing when most kids are starting their main growing period. She may have fertility problems. Not so worried about that one just yet. Again, if you want to know more, the CARES Foundation website is really informative. CAH is the most common genetic "disease", so in our own way, we're lucky.

And yeah, it's genetic. In order for someone to have CAH, both their parents have to be carriers. It's recessive, so carriers don't have CAH themselves. The odds go something like we have a 1 in 4 chance of having a child who is unaffected, 2 in 4 chance of having a child who is a carrier but unaffected, and a 1 in 4 chance of having a child with CAH. The boys are going to be tested for CAH now, since it isn't as obvious in boys as in girls {due to boys having androgen present anyways}. And we're not sure what to do about this baby. The endocrinologist said the only way to really know is with an amniocentesis, but we are most likely not going that route since the risks outweigh the benefits at this point. We'll have our "big" ultrasound at the end of October and we'll see what they see then, I suppose, and take it from there.

Whew. That felt therapeutic. I still feel overwhelmed at times, but I'm trying to remember how lucky we are that this is all it is, if that makes sense. When we were talking to the endocrinologist on Tuesday, he told us they had a little newborn at UMC right now who has a severe form of CAH and is fighting for his little life right now. We made it six years before the CAH was diagnosed, which means she has a milder form called late onset CAH. Mercy is happy with the idea that she gets a pretty new bracelet that she has to wear all the time {she has to get a medical alert bracelet-if something happens to her she needs to triple her hydrocortisone or else get a shot of hydrocortisone, to keep her from going into adrenal crisis} and always reminds us to give her the pills at breakfast and dinner.

She's still Mercy, we're still us, just a bit wiser.

Mercy's bone scan. She was 6 years exactly when it was taken. Her bones date at 8 years, 10 months. That's a 2 and a half year difference.

Saturday, September 25, 2010

March Madness

Yes, the rumors are true. March madness will hit here around St. Patrick's Day 2011. That is the time that our final four will be announced. We're having another baby-- okay, really just me. CJ just gets to pretend like he's suffering with me. Not really that fair, if you think about it... anyways.
We've known since after the reunion in July, but I'm one of those paranoid people that doesn't like to tell anyone {well... *almost* anyone...} until I've either heard or seen the heartbeat. Unfortunately, while my doctor rocks and is the best doctor EVER, she doesn't usually see patients until they're in the second trimester, so we didn't have an appointment with her until last week. Mercy was in school but we took the boys. We hadn't told the kids yet, so right before Dr. Lotke came in CJ told them. Porter said "okay" {he's not one of many words} but Jameson said "no. no baby." Um... too late, little man. Luckily once the doctor went over the usual stuff, she busted out the ultrasound machine for us so we all got to see the baby. Well... what we thought was a baby. According to mister J, it is NOT a baby, but in fact a lizard. He's quite positive of that. Porter was fascinated by the baby, who was very wiggly and squirmy so the only photo the doctor got for us was of the top of the head. But a photo is a photo is a photo in my mind! When we picked up Mercy and got her home, we showed her the photo and told her about the baby. She's very excited, which is great! Last time she was still so little that she didn't really get/care about what was going on, but now I get to use this to my advantage. Example: she was playing with my hair {heaven...} and was stopping, but I told her that the baby gets mad when she stops, so she kept going. Evil? No... creative? Yes. Her teacher is also pregnant and due about a month after me, so she's already been hearing about baby talk.

To answer some possible questions:

No, we will not be naming the baby Patrick, Patricia, or Pat. And since I tend to always go past my expected due date, I'm not banking on having the baby by then anyways.

Yes, I'll be going for another VBA2C. I'm seriously almost as excited about this as I am having a new, snuggly being in the house, since my last delivery was absolutely what I wanted! And yep, my doctor is a-ok with me having another one, in her words "if you pushed out an almost 9 lb baby, why wouldn't you be able to do it again?" Again... love. her.

Yes, this is our last baby. Unless we win the lotto, and then maybe we'll reconsider. But even then... no, we wouldn't.

Yes, I've been sick. Not pukey sick, but lots of nauseousness. And you should all be proud of me, I've had to give up drinking Coke because apparently baby and my tummy don't agree with it. Sigh.

Yes, I'm having cravings. Apparently this baby is much more tied into my Canadian roots than my other three, because I've been constantly craving things only found in Canada, like All Dressed chips {thank heavens for saints like Dawn, who mailed me a package of them!! LOVE HER!!}, ketchup chips, dill pickle chips, Wunderbars, Crispy Crunch, poutine {don't ask, it's something you have to try before you get the definition}, Swiss Chalet... oh, to go home for just a week. I swear I could blow a boatload of cash just sending home goodies to stock up on. Luckily I have friends in high places as well as a mother who happens to be going to Canada in a few weeks, so I'm being stocked up.

Yes, I hid it from most of you very well. Please forgive me/us!! I really did want to tell those of you that we were face to face with, especially on our vacation this summer, but I'm a paranoid person by nature. I promise to share my Canadian goodies with you if you forgive me.

No, I'm not getting enough sleep. So if anyone wants to come and stay here for a few days so I can go off by myself and just sleep, that would rock. {end of October, here I come! CJ and I are going to San Diego by ourselves for his cousin's wedding, and mum is staying with the kiddos here. Can't wait!!}

Yes, we'll be finding out the gender this time. I know we didn't find out with Jameson and it was a really cool experience, but with this being our last, I just want to know.

Yes, Jameson has come around to the idea of a baby. He told me today that he was going to be nice and share his toys with the baby, so hopefully he's a man of his word and actually does. We'll see though... he's a trickster.

No, we're not really hoping for a specific gender. It would be nice to have another girl and even it all out, but I also think it would be neat to have another little boy and Mercy to be the princess of the family. So either way, it's a win/win situation in my eyes.

That's really all the questions I can think of... we should be having our gender ultrasound either at the end of October or the beginning of November, so we'll know soon. I can't believe it's that fast!

Tuesday, September 21, 2010

Sweet, Sick Boy

I realize I haven't posted in ages, including our big family reunion and trip, but that will come. I've been wanting to post this for the record for a bit, but at first I was too emotional, and then I just wanted to avoid it, but now I'm just doing it. Follow all that?

My sweet, happy little Porter got sick a few weeks ago. He'd been having allergies, and I thought they were finally calming down, but then he got sick again. He woke up on Saturday and was fine at first, but then got tired and lay down on the couch and fell asleep. He woke up mid-morning and started throwing up, poor boy. I cleaned him up and put him in his bed, where he fell asleep again. We watched the BYU football game and he woke up towards the end, cheerful but coughing a cough that he hadn't had before and I hadn't ever heard before. He came and snuggled with me on the couch for a bit, then tried to eat a bit but that came back up too, so I sent him back to bed and he was fine with that. He fell back asleep and slept off and on for the rest of the afternoon into the evening, which is when CJ and I noticed his breathing was funny, he just looked like he was working pretty hard for each breath. We tried rolling him on his side and saw a big sweatmark the shape of his whole body from where he'd been laying in bed, but he had no fever. CJ took his pulse and it was at the very top of where it should be, and we counted his breaths and decided to call the doctor. We called the after hours service and the doctor called us back about an hour later, and once he heard our concerns he didn't like what we said about his breathing, and told us to take Porter to the E.R. Since it was after 10PM we decided that I would go with Porter and CJ would stay home with Mercy and Jameson, who were both sleeping.
We loaded Porter into the car with the stroller and his Thomas blanket and he and I drove over to the hospital. Once I told the nurse what was going on she checked his oxygen saturation (hopefully that's the right term) and it was below 85, I can't remember what it was but it wasn't good. They put him on oxygen and got us back into a room. They tried giving him a shot of epinephrine in case his allergies had gotten really severe and it was an allergic reaction or something, but that didn't have any effect except to make him cry. Then they gave him an albuterol treatment with the nebulizer, and then the doctor came back and ordered a chest x-ray. At this point I'm freaking out because I thought it was just severe allergies or something, but it obviously was something bigger. Once the x-ray came back the nurse came and told me we'd be staying the night, it looked like Porter had pneumonia. They gave him some more medication, again, no idea because it was about 1AM by this time and I was trying to process the information as well as deal with my own allergies, which were stuffing me up and making my head feel huge. We got into our new room about 2AM, the hospital put him in a private room and brought a bed in so I could stay in the same room with him. The nurses were really great and sweet, and Porter finally got to sleep.
SUNDAY: We were woken up about 7AM by the new nurses and the food services, and Porter must have gotten plenty of sleep the day before because he was wide awake. I was struggling, just not enough sleep! We were really lucky, the whole time we were in there we had wonderful, sweet nurses who just bent over backwards trying to make Porter comfortable and happy. And I gotta say, the hospital food was really good! Mercy's best friend, Willow, and her awesome family came to visit us and brought Porter a new Bumblebee toy to play with and a book and sanity saving things for me, Porter really appreciated the company! CJ also stopped by in the morning with our great friend Tim, so that Porter could have a blessing. Dr. Price (not our normal pediatrician, but he's in our practice) came around to check on Porter and update me. He let me know we wouldn't be leaving that day, Porter just wasn't responding to the meds as well as they hoped. That was a shock, and hard to explain to Porter why we couldn't go home just yet, he was really missing home. The nurse found out that he loves Scooby D00 and brought him this entertainment center on wheels thing with a DVD player and Nintendo Gamecube, and she brought him the Scooby Doo movie to watch, as well as some other cartoons and movies to watch. Again, so grateful for our nurses! They also let him take the oxygen tubes off, and he did great, kept his levels up. CJ brought Mercy and Jameson to visit for a little bit after they got out of church, and you could tell Porter really missed Jameson, and likewise for Jamie. Mercy was fascinated with all the things in the hospital, from the oxygen tubes going in Porter's nose to the pulse ox on his finger. It was hard to say goodbye to them when they left. The goal to get Porter released from the hospital was for him to be able to go all night without needing oxygen, but unfortunately that night, within about an hour of him falling asleep, his oxygen levels started dropping again, so they had to put him back on the oxygen. The night nurse kept trying to take him off it, but every time she did his oxygen would drop again. So another night for us.
MONDAY: Another day, another dime... Luckily we had fun visitors to help keep our spirits up. MaryBeth, Rick and Tatiana came to visit us and brought Porter a Play-Doh set (seriously... most genius gift ever. ever.) and candy and a coloring book and crayons. And sweet, sweet chocolate for me. The company was the best part, MaryBeth can make me laugh anytime I talk to her, and I really needed it then. CJ came to visit with Mercy and Jameson again, and they got to stay for a nice long time. The food services lady brought Porter lunch while they were there, and she went and got Mercy and Porter french fries, cookies and ice cream so that they wouldn't feel left out. So nice! Sister Steventon, our Primary President, came to visit too, how she heard about Porter in the hospital I don't know, but I'm going to suspect.... MaryBeth? I really don't know! Then in the afternoon Porter's best friend Isaac came to visit with Kim and his brother Spencer, along with a balloon. You can bribe Porter with a balloon, I swear. The boys got hooked on Scooby Doo and just hung out while I got to have chat time with Kim. Truly, we are such lucky people. The nurse also let us go out for a walk, which Porter loved. He was so happy to get out of the room for awhile. The hardest part of the day was figuring out what to do for the night. We got lucky in that CJ had Saturday-Sunday off, but he had to work Monday night. We were so lucky, again, to have great friends, and we had offers for Jameson and Mercy to stay with a few different friends. We ended up having Mercy stay at Willow's house since she's really comfortable with both Martha and Johnnie and I knew she'd be happiest with them, and then lovely, lovely MaryBeth came and stayed at our house from 7:30PM til when CJ got home in the early morning, so that Jameson could sleep in his own bed. His bedtime is between 7 and 7:30mPM so he was asleep the whole time and had no idea what was going on, since by the time he woke up, CJ was home. Truly a massive weight lifted off my chest when MaryBeth offered to stay at our house, Jamie's never stayed away from either CJ or me, so I was really worried what we should do. MaryBeth, you are an angel, really. Thank you so much. Porter also managed to stay off oxygen the whole night, which meant we could go home the next day!
TUESDAY: Home. The doctor gave us our marching orders in the morning, and we got out just before lunchtime, armed with a brand new nebulizer and list of instructions as well as medicines. Porter was so glad to get home, him and Jameson went right into their room and started playing with the toys that Porter missed, and then with the Play-Doh. I think that's about the time that I was hit with the emotional wall and sniffled my way through the rest of the day.
I know it's not nearly as scary as what many others have been through, but for our first E.R. visit, it was quite the ordeal in our minds. I'm glad that Porter's completely recovered, and so quickly, and I'm glad for the prayers that were offered for us, as well as the visits and the calls and the dinners (THANK YOU LAUREL AND LYNSY!!). They truly made us feel so loved.

The first night.

Sunday, when they let him take the oxygen off. Seeing him so pale still makes me sad.

Sunday night, started off good with no oxygen...

but then it started dropping.

So the oxygen got put back on.

Playing with Mercy and Jameson

Monday night, no oxygen all night!


Waiting for the doctor to release us!

Almost home!