Our family is growing in many ways... Growing in numbers, knowledge, parenting skills, growing in love, in our faith, growing our culinary skills (if you can call it that), growing without gluten (some of us), growing green...........

Sunday, February 21, 2010

Speaking of doing things in your sleep...

This one isn't so cute, though.

I've noticed Ryan has a tendency to do something in his sleep, and it's really been bothering me. Hopefully he won't mind me writing about this. This isn't a gripe session. It's a genuine concern.

So, I used to be the one to always get up with Aiden at night. He needed to nurse; not much Ryan could do, especially when Aiden was sleeping in our bed. But now Ryan gets up if Aiden wakes in the middle of the night. He goes in to try to get him back to sleep without nursing. Aiden often doesn't wake until about 4 or 5, at which point he demands to nurse, which is fine (if you knew how often he woke up until this past fall....). He had been waking a bit earlier lately b/c of colds and teething. Every now and then I would wake up when Ryan was also waking...but sometimes instead of him jumping out of bed to go to Aiden, like he was supposed to...he was turning OFF the monitor!!!


And he was totally unaware of what he was doing. Ok, so he wasn't really asleep. But he was mostly asleep and not awake enough to realize what was going on. One night recently, he was turning it off and I caught him and said something. Aiden had been crying before he turned the monitor off. I asked if he was going to check on Aiden, and he responded...but he's not crying now. Um, yeah...you don't hear him now because you turned the monitor off! He still wasn't getting it, so I just had to get up and check on Aiden, who actually had went back to sleep (probably after he realized nobody was coming to get him, poor thing.)

The problem is, this has happened more than once. And Ryan is completely unaware of what is going on. Sometimes I don't wake up when he gets up with him, not if there is little fussing and he goes right back to sleep after Ryan is in the nursery. Once I actually woke up after Aiden was crying...it took me a while to figure out what was going on, and it was because Ryan had earlier woken and turned off the monitor! I'm not sure how long Aiden had been crying before I finally woke up. Ryan was snoozing away next to me and didn't remember turning off the monitor when I asked in the morning. This was actually the first time this happened. The other times I've been lucky enough to wake up when he was turning off the monitor.

Some of you might think..no big deal. Aiden will go back to sleep on his own after a while anyway. Well, that's not how we roll. We don't do things like that. When Ryan is awake and we talk about this the next day, he doesn't like it, either. He is just completely out of it when it happens. We're worried that something could happen where Aiden does need us and we can't hear him. Surely I would wake with enough crying. But really, I'm a deep sleeper once I'm out. I keep that monitor turned way up!

*Sigh* Not sure if there is anything much to do. The monitor is kept right at our heads, and I have been putting it closer to my side than in the middle. Of course, the last few nights, Aiden's been sleeping until 4 or later, which helps. But it's still a concern.

Saturday, February 20, 2010

Cutest. Thing. Ever.

Ok, I KNOW I say this about so many things that Aiden does....that it's just the cutest thing ever. Here is one more to add to the list.

When I tell Aiden goodnight, he's with his daddy, brushing his teeth. Daddy has the last couple steps in the bedtime routine. So, I'll always say goodnight a last time from the steps and blow him a kiss. Over time, he's associated the word "goodnight" with blowing kisses because of this.

I always go in to check on the boys before going to bed myself. I straighten them out in their beds, make sure they're covered up, and kiss them and tell them I love them. When I went in to Aiden the other night, I whispered, "Good night, baby boy." And...in his sleep...he blew me three kisses.

Is that not adorable?! My heart about melted.

Wednesday, February 17, 2010

Eighteen Months

Ok, I'm finally getting around to it. To be fair, Aiden has been sick some, and then I had what we are sure was the flu. Then I got even sicker from the Tamiflu; seriously, I'd rather have the flu. I won't be taking that stuff ever again! And then I had to wait to get access to the good computer with the pictures from my hubby who is busy with tax season, so here we are halfway into month 18, and I'm finally getting posting this. Sorry!

This is kind of a long one. Been a busy month for the little guy!

Weight 23lbs
Height 31 inches

  • Hats. Aiden suddenly loves hats and asks for us to put them on him all the time. He also likes to put on his baby sunglasses, which he never liked before (even hated!).
  • Puzzles. He's getting quite good, too. He has three wooden puzzles, and I think it's time to get some more. The funny thing is, he's better at the ones that are slightly more difficult... His favorite right now is one that has emergency vehicles...police car and motorcycle, fire truck, ambulance, etc...even a tow truck. When he picks a piece up to put it on the puzzle, I tell him what it is and what they do (the firetruck comes when there is a fire and the firemen help to put it out and make sure everyone is safe...that sort of thing). He even tries to say "tow truck" when he gets that piece.
  • Dancing. We really need to get record this so you all can see, but Aiden has the funniest dance moves. He will play certain toys that have music and then dance to the music. When dancing to certain songs/music, he will slowly "walk" but will spread his legs as far to the sides as he can and will put his hands on his thighs as he goes. Hard to explain, and it is absolutely hilarious. We have NO idea where he got this from, but it's the way he moves! Other times he nods his head (slowly and as far down and up as he possibly can) to the music. It all depends on the type of music that is playing.
  • "Again." He signs it instead of saying it, but it is his favorite word these days! After I sing a song, after we read him a book, after just about anything (but those two things in particular), he immediately signs "again."
  • Singing. He loves for me to sing to him. He'll sign for me to sing whenever I'm changing his diaper or nursing him. And usually before I'm through with the song, he'll sign "again." It's like he knows the song is almost over and wants to be sure I know he wants more!
  • Reading. He's always loved reading. But this child thinks every hour is story hour. Seriously. He constantly asks for us to read to him. (And of course we happily oblige! Well, usually. Sometimes it's a bit harder when I'm trying to fix dinner and he's working on the fifth or sixth story...)
  • Kissing. I know, this has been mentioned the last couple months. BUT not only does he love to kiss us all the time now, he also likes to kiss his animals...AND to make them kiss each other! He'll take his two little kitty toys and put their mouths together and make the kissing sounds. A.DOR.A.BLE. Seriously. (There's a picture in February's photo album of him doing this. You have to see it!)
Oh...wait...here's a picture...
  • Rubbing noses. I know I mentioned this last month, as well. But it's so cute, and he starts it himself! He'll lean forward and turn his head side to side so we're rubbing noses, and he'll say "neh, neh, neh, neh." I'm not sure where the sound came from, but this is the only time he does it. This kid really is too cute.
  • Pillows. The kid loves pillows. If he joins us in bed, he has to get on Mommy's pillow, too. We finally found Camden's old toddler pillow, and he really likes sleeping with that. And he just loves getting all the couch pillows together and playing with them, especially....
  • Pretending! His favorite thing to pretend is sleeping. He'll lie his head on a pillow and pretend to be sleeping. He'll close his eyes, put his finger to his lips and say "shhhh" and act like he's asleep! Too cute.
  • His little tricycle toy. He likes to be pushed around on it, and he can finally move himself around on it, as well. It's now a toy that he can only play on when a parent is next to him, though...because he also figured out how to STAND on the seat (and even let go of the handlebars once while standing!!).
  • Favorite foods... Tuna. Can you believe it!? But it is. I add just a tiny bit of veganaise, and he will eat as much of that stuff as we will let him! Bananas is another favorite, of course. He asks for them all the time. Blueberries. Tomatoes. Taco soup. If he's eating something he might not love, he'll ask for fruit by doing the sign for fruit - or cheese, any kind. Oh, and cinnamon! If he's not crazy about something but sees you put cinnamon on it...oh boy does he suddenly love it! Same thing goes for cheese; put some Parmesan cheese on something and it's suddenly ten times better. He also likes a lot of soups that I might not have expected...just about any vegetable soup, lentil vegetable soup even, tomato soup (and we just discovered tomato bisque...yum!). He really likes soups! I'm looking for great veggie soup recipes if anyone has any to share. I'm wanting to stock up and freeze a bunch to have on hand, and I'm looking for a variety of soups so we don't get bored with them easily.
  • Kisses for his hurts. He seems to most often bump his head, and there for a while it also seemed that no matter what he hurt, he would point to his head and expect me to kiss there. But now he'll also show me his hands if he falls on them. He'll come to me and either point to where he hurts, lean his head toward me if that's what he hurt or put out his hand, palm up and give me this pouty little sound, indicating he got hurt. Then I kiss it, tell him he's all better now, and he seems to agree (usually).
  • He's got a new favorite naptime/bedtime book, too. Brown Paper Teddy Bear. We ALWAYS read Guess How Much I Love You, but he discovered this book and asks for it over the other now! So....the bunny book is getting some shelf time lately.

Least Favorites
  • Thinking Mommy is leaving (or Mommy actually leaving). We thought maybe we were lucky and missed out on this....but separation anxiety and stranger anxiety have moved in! Just a few weeks ago, this became noticeable. Even when around people he sees every now and then, Aiden has become clingy with me and shy with others. When we got his hair cut recently, he wasn't even happy with me being right next to him. When someone new is around and I am holding him, he hides his face in my shoulder. (And I have to admit, sometimes it's just too cute and quite endearing.) Now that he's older, too, he stays in the kiddie room when I go to my Mommy Bible Study meetings. He's stayed in there twice, and both times he was rather cuddly with the person watching him. He didn't cry, but he was pouty and wanted to be held. Pull at my heartstrings, why don't ya...
  • Going down the stairs on his own. I think he's just very aware that he could fall. He might go down one stair, if that, and then will turn to us and reach out to be picked up.
  • Snow. He's not a fan.
  • Drinking from a cup by himself. A real cup, I mean, not a sippy cup. He was doing fine with it last month, but he realizes he can spill it if not careful. So, instead of worrying about spilling (which he REALLY does not like doing!), he would rather us hold the cup. Actually, he refuses to hold it himself! We'll even help him by holding it over his hands. Sometimes he'll do this, but he usually puts up a fight.
  • Making/seeing others cry. A couple times this child has banged into my mouth with his head hard enough to make me cry (I mean...I had a bruise from one for a few days, so I think that indicates how hard it was), and he's done the same to Camden, as well. Once he sees us crying, he gets really upset, like he is scared.
  • Being held in certain ways (for example, if you hold him out in the air like he's flying) or being set on the edge of something (like on the counter with you in front of him, maybe to wash hands or something like that)...he's very aware he could fall and doesn't like it. He gets nervous and tries to cling to whoever is holding him or next to him.
  • Getting things from under (or close to being under) the table. He's bumped his head enough to have learned... If a toy is on the floor and within a few inches from being under the table, he won't get it himself. He'll stand a foot or more away and will act like he's reaching with all his might to get it, looking at you in a helpless way...b/c what he really wants is for you to get it for him.

New Developments:
  • Talking. Aiden is definitely saying more words. He also talks a LOT in his own jibberish. It's funny to hear. He certainly has a lot to say sometimes, that's for sure; he's just the only one that understands what he's saying! We actually got this on tape recently, but we have a hard time getting things from the camcorder to the internet to share. Not that we don't know how...I think we need a different camcorder. Some compatibility issue that we're not sure how to fix. (Anyone well versed with these things is more than welcome to come and help out! We actually have a really nice camcorder...not sure why this should be so difficult!) I really like how he has his own ways of saying things sometimes. For example, ball is always said twice (ball ball). And when he says Hi, he waves his hand back and forth, but when he says Bye, he opens and closes his hand to wave.
  • Separation anxiety/stranger anxiety. Mentioned above. He also won't talk when around some people, even if they're not "new." BUT he will tell them "bye bye" when he thinks it's time for them or us to leave! Funny how he can be so forward about that.
  • Cleaning up. I mentioned this last month, but this time I mean with food. Aiden doesn't throw food often, but if he doesn't want something or is done with it...first he'll try to hand it over to us. If we don't have a hand ready to take it immediately, he tosses it. So...when that happens and the meal is over, he has to help clean it up and throw it in the garbage. We've noticed lately that even if he just drops something, when we take him out of his high chair and set him on the ground, he'll go on and pick it up and throw it away! Without us asking! We don't make him clean up those messes...that's just part of him being a toddler, so we take care of it ourselves. We just expect him to help when he does it on purpose. But it is extra adorable when he just notices the food on his own and goes to clean up himself!
  • Turning his toys on. He has figured out where the on/off switches are, which is fine by us. But he's also figured out how to turn on things such as the dishwasher...not as fine by us. And he tends to turn the tv on and off when he sees fit (but will also undo whichever when you ask him).
  • Walking backwards. He just started doing it one day, out of nowhere. Walked across the room backwards...until he walked into some toys. He'll need to learn to turn his head and see if there are things in the way...
  • Asking for help without whining!! I think he's figured out he doesn't always have to fuss when he can't get something just right. He'll often just immediately do the sign for help instead of fussing or whining. Boy does that make things easier on everyone! On the occasion that he does start to whine, if we ask if he needs help, he stops whining and signs "help"...and that's that. Cuts down on a lot of frustration for all of us! (We love signing!!!)
  • Flossing. Yes, Aiden flosses now. Well...WE floss his teeth, but he is very agreeable about it. The dentist keeps saying we don't need to floss but to start flossing when teeth touch. Well, he has teeth that touch! One day I noticed some apple peel stuck in between two teeth. If that can happen, it's time to start flossing. Better to start sooner than later anyway, we think.

Showing you his Valentine's shirt.

I was going to try to get some better pictures, but I never got back around to it. After taking THESE pictures, Aiden got sick. And then I did.... And then it was a week and a half late. Blah, blah. These pictures will do after all. Haha.

Sunday, February 14, 2010

Test Results

As many of you know, and some of you might not, we have been trying to find out if Aiden has Celiac disease. He has been having symptoms since this fall. It has not been a fun time, and we've been trying to figure out what could be the cause for all the problems. We took him off gluten in January for three weeks, and his symptoms basically went away. We put him back on gluten, and they seemed to return. The hard part was getting him to consume gluten again, though. He didn't seem to want much of the foods that had it, and it was more of a challenge than we expected. We got a referral to a pediatric gastroenterologist at Duke Children's Hospital and saw him last week. We were surprised he decided to go on with testing, as Aiden hadn't been back on gluten for long. If you aren't familiar with what we've been going through, here's some info on the blog that we posted recently: http://daisyryanadkins.blogspot.com/2010/02/overwhelmed.html and http://daisyryanadkins.blogspot.com/2010/02/testing-testing.html

I know many of you have been wondering about Aiden's test results. We finally got the results from the last one on Friday. The tests all came back negative for Celiac. You might think we would be breathing a sigh of relief, but that's not what we're doing because it means our search is not over. The dr says he is fairly confident that we did not test too soon. I'm a bit skeptical but trying not to question too much. Aiden had only been on gluten for 12 days, and we had a really hard time getting him to consume it after being off of it. It only takes a little bit to count, but some days it was very little. And now (after the fact), everything we're reading says you shouldn't go gluten-free before testing b/c it can skew results... Anyway, we talked some with the dr about what this means. Even if he does not have full blown Celiac, he could still have a gluten sensitivity or even a wheat allergy. For those not familiar with Celiac, it is not an allergy; it is an autoimmune disease. Celiac, gluten sensitivity, and a wheat allergy are all quite different from each other. We definitely think SOMETHING is going on in relation to gluten because there is a very obvious difference in his symptoms when he is eating gluten and when he is not. Anytime he eats a decent amount of gluten, the day or two that follows will include the symptoms returning. So, after consulting with the Ped GI, we are going to go back to a gluten-free diet for a number of MONTHS. This will ensure it is completely out of his system for a good while. After so many months, probably six, we will begin introducing gluten again. If the symptoms return, that could mean he has a gluten sensitivity. We might end up testing for celiac again...just to be sure...but only if the symtpoms return and after he has been back on gluten for a number of months again. We can test for a wheat allergy if we want, but that involves going to the allergist again. We already have a follow-up visit scheduled in the fall, so we'll wait until then. We're already keeping Aiden off of some other common allergens and are waiting to test for those, but the dr might wait another year just because of Aiden's young age. Those tests can be false easily, especially with really young children. So, we'll wait to see what that dr says. I think we're more convinced this is a gluten issue and not a wheat allergy, though.

During Aiden's time off of gluten, the entire family will actually be going gluten free. I have a gluten sensitivity myself. And this is actually very common, more than you might think. Also, if Aiden DID somehow have Celiac, it often runs in the family. So, there are many reasons to have the whole family on this diet. For one thing, it just makes it easier! We won't have to make special things just for Aiden, and we won't have to worry about him accidentally getting something he shouldn't because EVERYTHING will be gluten free. Plus, this gives us a chance to see if anybody else happens to feel better on this diet. Symptoms can be very varried, or you may not even notice them - or may attribute them to something else, which is common. So, since we are doing this with him, it doesn't hurt for the rest of us to join in. (Ryan's just realized this means no cereal bars, which he usually eats at work, and Camden is not happy this means no Cream of Wheat...so we'll have to find some good substitutes and work on learning which flours, etc, we can use when cooking... And time to start scrutinizing food labels! You would be surprised at how many things contain gluten.)

This also means that when we travel, if we get to do so during this time, we'll have to really watch what we're eating when eating out or visiting others. This will be the biggest challenge but not impossible. :) And no worries about this being unhealthy. A gluten-free diet is perfectly healthy. We will make sure we get all the nutrients we need. A diet with gluten is not necessary in the least and will certainly not hurt anyone. Hopefully, though, we can figure out what is going on sooner rather than later. This will take longer than we would like, but it's definitely worth it. And we definitely all agree that there is some correlation between these foods and Aiden's symptoms.

Thanks to all of you that have been so supportive as we've been wading through all of this. It's been frustrating and exhausting at times; we feel like it's consumed us as it seems like just about all we think about is his food intake and symptoms, keeping track of every little thing and analizying all of it. And it's just been no fun for Aiden (or us) when his symptoms do appear. We had been hoping for a clear answer, but it seems like we won't quite have that for a while. Either way, hopefully we're on the way to finding out what is going on. We do appreciate all the support, the concerns, the prayers, everything.

Friday, February 12, 2010

What I wish

If I could have a wish right now, it would be for EVERYONE in our home to be healthy for at least a week. No, two weeks.

Sound silly? Not if you have been around us anytime during 2010. What? You haven't? Well, that's probably because we've been TOO SICK to have you over.

Actually, we haven't been sick in the contagious sense the entire time. Well, Aiden and I spent a week with some really bad colds and sore throats. That started Jan 13th. By the way, I hate how "cold" sounds so harmless and simple, but, man, it can knock you out and make you miserable if you get a really bad cold. They need a harsher sounding name for that... Since then, I've been battling a sinus infection. I finally went to the dr for that a week ago, but that was because I got laryngitis and completely lost my voice and they said I had to come in for "anything involving the throat." So, I got some antibiotics for the infection, but nothing for the laryngitis since that's just due to the inflammation and all. I would have had some cough meds to help calm that, which would also have let me sleep some, but I'm still nursing so that was a no go. Due to that, though the infection was going away, I got absolutely NO SLEEP because of all the coughing and congestion.

Add onto that with Aiden waking from teething. Fun times.

Then Ryan gets a cold.

Then he and I start to feel better. Not quite there yet, but we were on our way. And Aiden gets sick again.

This is our life. Welcome.

Aiden woke up yesterday with a fever. Threw up a couple times when he tried to eat, but mostly he refused to eat. (It's times like this I'm glad he still nurses or else I might worry a bit more.) He spent the day lying around, taking extra naps, and wanting his mommy right next to him. While he looked completely pitiful, it was so endearing. A mama can't help but love being needed in such a way every now and then. I knew we were in for a rough night, too, when he kept waking and by midnight kept reaching for the door, indicating he wanted to go to our bed...(which he did, of course!). But did I really mind? Anything for that little guy.

He's fine today. Fever is gone, and he's back to normal.

But now my sinus infection seems to be returning. Oh, that makes me so happy. I've only been fighting it for a month now. While I'm glad it's nothing contagious, which means I don't have to worry about getting anyone else sick from what I have, I still would like to FEEL well myself.

Camden seems to be the only one all of this isn't touching. How is that?! I want to know. Because I want it for the rest of us! 2010 has not been the best year so far for some of us.... Of course, if I could get some sleep and maybe get some stress relief, that might do it for me. I'm quite aware of that.

Seriously, I would just love for a couple weeks with everyone perfectly healthy. Is that really too much to ask?? I would think not, but....

Sunday, February 7, 2010

Testing, testing...

Ok, so when I wrote the last post about all this gluten stuff with Aiden, we were waiting on a referral to the pediatric gastroenterologist at Duke Children's Hospital. I called our family dr's office on Monday, knowing our provider was not in that day and wouldn't see the request until Tuesday. So, it came as quite a surprise when I got a phone call at 8am on Tuesday morning, before the office was technically open. We already had an appointment with the specialist THAT THURSDAY...two days away! That never happens...getting in that quickly. We even got the specific ped GI that we requested (per a recommendation from a friend who works with these providers, saying this guy was "the best" of the department). I was shocked. But also a bit concerned...did we really need to go in just yet? I wanted to talk with the nurse or doctor before actually going in for an appointment.

And...surprise again! I got to speak with a nurse that same day. The visit wouldn't be pointless even if testing was put off, she said. She also relieved me quite a bit when she said Aiden only needed to consume the equivalent of a graham cracker a day to get enough gluten for accurate test results. Aiden would at least eat some cheerios each day, and that's what I gave him to snack on when we were running around, so he should have gotten enough. She also said some doctors would test after being on gluten for two weeks, some waited four.

Thursday rolled around, and we got another call. Instead of waiting until the afternoon, could we come in as soon as possible? Some spots had opened up. So...off we went as soon as I got Camden off to school, picking up Ryan on the way. We left the house at 10am. We returned home that afternoon after 3pm. We were in the exam room for three hours, at least. The only stop was a very quick lunch after leaving the hospital. It was a long day, needless to say.

But that's to be expected there. We always have to wait a long time when we see a specialist at Duke. The upside...when it's our turn, the doctor gives us plenty of time...taking a good history, getting all the facts and hearing us out. You may spend time waiting, but that's a small price for great care. Plus, this time, during our wait, my friend Melissa stopped by to chat with us, too.

So....after talking with the doctor for quite a while and filling him in on...basically everything Aiden has experienced since he was born (seriously, they do a good job), he told us what we kind of knew. This could be celiac. Could be a gluten sensitivity. Could be a wheat allergy. All of those are completely different from each other. Also...this could be something else altogether. We explained how we were concerned about Aiden's slow growth (going from above the 75th%tile at birth to the 30th at one year and now in the 14th at 18 months...all the while being a VERY good eater), his tendency to get sick easily and stay sick for a long time (despite all the protective factors), and all the other "symptoms" that could mean something or could mean nothing at all. He agreed. And while he said the slow growth was something to keep an eye on, he wasn't too concerned because at least Aiden wasn't LOSING weight; it's possible he's also still "settling into" his normal growth pattern (is this something they're all supposed to say to help keep parents from worrying too much? Ha.). Anyway, after all this talking and whatnot, he decides to go on with the blood work. I was a bit hesitant because Aiden had only been "on" gluten for 12 days at that point, but the doctor thought it was fine, especially with Aiden being younger. And hey...going out there is not a quick trip (or cheap), so we went on with it.

Aiden was quite the trooper. They took SEVEN vials of blood. Wow. We didn't expect that. Aiden did cry at first, but after a couple vials, he was fine...just put his head up against Mama and watched where the blood was being removed from his arm. (I wonder how this will affect his sudden separation and stranger anxiety that he has been exhibiting. This certainly reinforces that strangers aren't necessarily the nicest people out there, huh?) He did pretty well, though. He later cried more after whacking his face into the corner of my glasses...

So now...now we wait. The results should be in within the next few days. If the results are positive for celiac, we go in for a biopsy to confirm. I'm really trying not to even think about that yet. We didn't even ask about the process when we were talking with the doctor. No point.

But if the results are negative... I'm not sure what that means. It means this might be ruled out. (But we will worry, of course, that they tested too soon.) There are many other possibilities, if we get negative results, though. That's not something we're really excited to think about, either.

I'm trying to just tell myself...whatever will be, will be. It doesn't help to wonder and worry. It was easier yesterday. Harder today. Today Aiden showed more symptoms, especially after he ate some more wheat yesterday than he had been. I think we've figured out that Aiden doesn't really care for white bread. He's always eaten wheat bread. We got a fabulous bread machine for Christmas and have been using that instead of buying bread...but we've been making white bread because in order to make wheat, we would need to buy extra gluten to use with it. But we don't want to buy all these extra ingredients and then find out that he does have celiac and needs to avoid them. We happened to buy a loaf of wheat bread the other day, and Aiden suddenly likes bread again. So funny. Camden was the same way. I always gave him wheat bread, and the first time he was given white bread at someone's house, he looked at it like it was the strangest thing ever. Ok..off topic. Anyway, this explains why he hasn't been wanting much bread...the bread, biscuits, ect have all been white.

I'm more worried about the results being accurate and trusting that they are accurate than anything else. Feel free to pray that they are accurate and that we can feel at ease with what we are told. Right now, that's actually our biggest concern. Thank you for all the kind comments and all the prayers. We really do appreciate it all. It helps having that support and knowing so many people care about our little guy.

Monday, February 1, 2010


It's been a while, I know. I do plan on writing about more than, as a friend would call it, Aiden's Red Chair posts. But I've been a bit overwhelmed lately. I have mentioned a couple times that we are having some problems still with Aiden and are looking into other food issues. It seems that has consumed my life these days. We were trying to keep it under wraps until we knew more, just telling close family and maybe a couple friends. I've posted about it just a little lately on facebook...more b/c I needed some support after feeling so defeated here and there.

Long story short...we are looking into problems with gluten. Does Aiden have celiac disease? We're not 100% sure, but it does look to be very likely. Ok, we're pretty sure he does. I like to KNOW things and have a hard time saying it is so without hard facts to back me up (um...with certain things..I am not like that with my faith, but with things like medical issues, yes, I am). We have not had the blood work done yet. This is where I am beginning to feel overwhelmed, really. I read up on this before taking him off the gluten, and I do know that he needs to be ON gluten in order for the tests to be accurate. Actually, I was going to go off gluten myself but did the blood work for me first. BUT I didn't want to do anything unnecessary with Aiden...why subject him to a needle and a bunch of blood being extracted just b/c of a hunch. (I know, I know...mother's intuition...we need to learn to rely on it a bit more, but I wasn't so sure this was the problem. We had already tried dairy with no changes; this was just the next step.) Anyway, so we went and took him off gluten and even mentioned this to our family doctor.

I'm skipping a lot of details here, but you'll get the gist. I'm battling some nasty sinus pain, so I'm just getting out what I feel I need to for the moment. This is mostly about me getting things off my chest. The informative stuff will come later when we know more.

So, off gluten...the symptoms went away. Completely. It was rather exciting. And I know some people who know what gluten is might think it's a difficult diet, to be gluten-free...but it really isn't for us. We don't eat many processed foods, and there are gluten-free alternatives to things like crackers and bread. It's not exactly the same, but still. And if we find out this is it for sure, there will be adjustments for learning to bake and cook with other types of flours, but we'll figure it out. Aiden eats mostly whole foods anyway (all of us do, not just him), so it really wasn't too difficult at all. It might sound strange, but I would get so excited when I would change his diaper and see a "normal" poopy diaper! Before, he was having 4-5 explosive bowel movements a day (I mean filling the ENTIRE diaper)...very soft ("wet," not just soft...but not quite diarrhea). It seemed like everything he ate was just going right through him. And the foods he eats are, like I said, mostly whole foods and things that should "bulk up" a diaper. These diapers should not be happening and are not what one would call normal for this age. But off gluten...things were as one would expect.

Anyway, after three weeks, time to go back ON gluten. If the symptoms reappear, we have our answer. It's a lot that the symptoms went away after removing gluten, but you also want to see if they come back with the food back in the diet. After a few days, we started to see the symptoms return. Not fun to see, esp b/c these diapers bring terrible, terrible rashes, regardless of treatment. But reassuring nonetheless. I mean, this would indicate we have our answer. Right? Well, the problem is...we aren't seeing the symptoms consistently. He'll have a day with them, a day without, etc. Why? Because the little stinker doesn't want to eat the stuff with gluten!!! I did not foresee such a problem. He will not eat bread, biscuits... He will eat crackers some but not many like he used to. I've made muffins, and he liked those some. He loves pasta, too, but we have to give him gluten-free brands b/c they're the only ones that can say for sure their pasta is made in an egg-free facility. So, we're finding it more difficult to get gluten into his diet than it was to get it out! Who woulda thought?!

The problem with this?? Testing. As my mom said, it looks like we have our answer, regardless of testing. But, as I reminded her...this is ME we're talking about. I want to KNOW. I have this need to know this is the right diagnosis. Plus, I don't want to have to restrict his diet in such extreme ways if it's not necessary. Gluten-free is not bad for you at all - quite the opposite - but there will be instances it will be difficult and limiting. I have talked some with my friend who is a pediatric dietitian, and she agrees it really sounds like celiac, but testing will tell us for sure. Yet, how can we test when he won't eat the darn stuff?! She's recommended going to a pediatric GI, and another friend has recommended one that works at the Duke Children's Hospital, which is where we would be sent. We're waiting on our doctor to refer us so we can get in to meet with this guy or even just ask a few questions over the phone. We're hoping he can give us some instruction or advice. Here I am breaking all my food rules and doing everything I can to get this child to eat gluten, and it's becoming terribly difficult. I hate doing it...b/c if he does have celiac, the foods are actually making him less healthy, but if we are to test for this, he has to be consuming gluten. (And I keep warning him, once this is figured out, the rules are back ON. Ha.)

This really is driving me absolutel crazy. On one hand, we weren't sure enough to do testing first and both felt it was better to try the elimination diet before subjecting Aiden to unnecessary testing. But now, I'm totally regretting that decision because we don't know how possible testing will be because of his current diet. I'm not even sure how long he needs to be consuming gluten, but I know a few days or couple weeks (after being off it completely for three weeks) isn't enough. I'm doing a bit of beating myself up over all of it because perhaps we could have had our answer by now and been on our way. Instead, I'm consumed by all of this...watching every little thing he eats, trying to make him eat what he doesn't want (and you know what he wants to eat...things like peas and carrots and fruit...wonderful things...just not breads and things with gluten!!), writing down every thing he eats, writing down when he poops, how much, all the details around it (these are records my friend told me to keep...to show the doctor and for her to look over if gluten isn't the culprit). Almost every thought I have is about this. On the days he's not showing symptoms, I'm checking his diaper nonstop. When he does, we're watching for the rash to return and questioning what to put on it this time and why it keeps doing this. Aiden is constantly pulling on his pants and scratching...even when the rash has taken a break. Diaper changes are very difficult lately. It's frustrating for all of us. And all of the symptoms and problems have been going on for MONTHS, so this is not something new. It is something we are ready to have the answers to so we can move on and get past it already.

Any suggestions?? Any ideas for ways to get him eating gluten? We welcome them. We also welcome good thoughts and prayers. Hopefully we'll have some actual news soon...whatever the answer is, we hope to know it soon.