Still tired...

The reactions seem to just keep coming at us. It started with whatever happened on Sunday that led to mouth ulcers, a sleepless night, bloody stool, and a behavioral reaction that left everyone exhausted.....and then yesterday she ate a peice of a paper towel which has kept Sunday's momentum going. Ahhhhhhhhhhhhhhhhhhh! Is it a better day yet???
I am so thankful that we can have such quiet "normal" baby days, but I get so down with our bad days. Its easy for me to pretend that Lucy is perfectly healthy in every way when I can keep her inside the house and away from all food, but it seems like the second we venture out and let ourselves relax our battles begin again.

Happy Birthday, Little Zac!!!!

Today my baby boy is OFFICIALLY 5!!!! I cant believe that 5 years ago today we were welcoming him into the world....after 36 hours of labor. My amazing little man seems sooooo old. I cant believe in just a month he will be riding the bus to go to the "big school" without his mommy. He can run, climb, add numbers, ride a bike, read(a little), clean up his own room, use the potty, get himself dressed all by himself, draw some great pictures, write his name..... the list goes on of the things that he can do all by himself. My baby isn't a baby anymore and somehow turning 5 just seems to have sealed it. I am so sad for all the things in our past that are now over, but so excited for all the stuff to come in his future! Happy Birthday, Bud!

I...am....sooooo....tired...

Ugh. Last night was seriously the WORST night ever.
We went to my parents house for the day to celebrate Zachary's coming birthday. Everyone had fun and behaved themselves. Lu broke out in some "blisters"(I guess you would call it) on her lips that bled, but that has been happening off and on for a while now so I didn't make a fuss about it. The blisters seem to be a painful annoyance that we just cant do anything about these days so we are just dealing with it. We haven't pegged them as an allergic reaction to something or just a completely unrelated issue all together- they are just a mystery.
We left fairly late and the kiddies fell asleep in the car as usual. When we got home we took Lu up to bed and plopped her in the crib expecting her to go back to sleep like she normally would. Well, that is where our night began. She sat up screaming like she had been hurt. We thought maybe she was fussing because she didn't want to go back to sleep so we tried to let her fuss it out but she just kept going. The rest of the night I was in and out of her room practically begging her to go to sleep. She was fine as long as she were upright, but the moment we laid her flat she would scream and scream. The only thing we could figure was the her reflux was flaring up and causing a lot of pain when she was laid flat. I actually caught her trying to sleep standing up around 2 am! It wasn't until around 4 that she finally passed out for the night!
I had to be up at 7 to babysit another kiddo this morning so I spent the day on 3 hours rest! Ahhhhhh! I am so tired!! Goodnight!

Forgot the cloth dipes...

Quite a while back we had to make the switch to cloth diapering because Lucy developed a rash from her navel to thighs that we could only blame on the disposable diapers. We had tried every brand on the store shelves and none of them prevented the rash, some actually made it even more severe.
Cloth diapering isn't that hard, and isn't like what it was "back in the day". There are no pins, folding, or leaking. They look just like a disposable dipe with Velcro and all. They are pretty cute actually. http://www.pinstripesandpolkadots.com/products/pc/viewPrd.asp?idcategory=10&idproduct=4104
Anyway, to my point- I got a little lazy and left a load of diapers in the dryer for a couple days. We used the disposables that we typically use at night/on outings because, before, Lucy's rash wasn't horrible when she wore disposables and really only appeared after wearing them every day for a few days. However, now, after just 2 days she has a pretty bad rash that looks nasty
. I feel terrible for being so lazy and it resulting in a consequence for Lu. She just wasn't this sensitive a few months ago. :(
That seems to be the theme for her issues lately. Her reactions to things only seem to get more severe and sensitive as she grows older(which is the whole reason the new doctor isn't suggesting a food challenge for a long LONG time). At this point, before we go anywhere or do anything that deviates from our normal routine, we question whether or not it is worth the risk that Lu may have a reaction. Our new doctor suggested that we begin to look at our activities as a family and assess the risk before we go out.

Dr Appt Update!

First, I will say things went super well. Dr Wood was a very very patient man who pretty much tells it like it is without a lot of fluff. We appreciate that. This is the first doctor we have ever seen that can actually say he not only has one patient like Lucy, but that he has had at least 100 from around the country!
For starters, he doesnt reccommend a food challange this September. He gave me a choice regarding whether or not to trial foods if I felt in my gut it would work out, but he was not reccommending it. He said that generally "these kids" that are like Lucy fall into a few categories of severity- some eating many foods by Kindergarten and bouncing back from food challanges quickly, others not eating foods until middle or high school and taking a tremendous amount of time to recover from each fail, and others that grow into adulthood without any foods at all and lead productive healthy lives on formula. He felt that Lucy fell into one of the more severe categories. There is little reason to push foods so hard right now especially knowing there is a slim to nil chance of her passing. As he put it- she will fail 19 out of 20 foods and is it worth all the agony at this time to get the one food?? At this time Lucy is growing acceptably on her formula and is generally happy with it, so there just isnt any urgency needed to get foods into her diet.
He went on to say children like Lucy have allergies that don't show up on blood tests because of the type of immunity they stem from(allergy tests test for a specific antibody to an allergen) But, as a precaution he ran some more blood work just to look for any other anaphalxys triggers for safety reasons.
He noted her significant amount of skin irritation. It conveniently happened to be pretty flared up this morning so he was able to see it in full swing. He wasn't recommending medication for it at this time, because again, there is a chance she will react to it. The way he described it was that her body releases entirely too much of the hormones that cause allergic reactions- she can react to just about anything at anytime and can sometimes react just because she feels like it. Stomach pain, rashes, swelling, runny noses, watery eyes are all just a part of her life. If symptoms become life disrupting enough we can go the medication route and assume the risks that may come with giving her oral medications but we don't feel we are at that point just yet.
Dr Wood also was not recommending another scope. He felt there was no sense in intentionally flaring her up just to see what her body is doing on the inside specifically. There is too much risk that we could throw her back into a downward spiral like we saw this past fall and winter.
So in the end, the doctor advised us to stay the heck away from food and do what we could to minimize her interaction with it. He even warned us to watch our cooking. Apparently when we cook food in an open pan on the stove, or use flour or dough to bake, food proteins are entering the air and could cause a reaction.
We are so relieved after this appointment. We feel like there is finally someone directing the ship here who has experience. Dr Wood assured us before we left that he could handle everything Lucy needs without a problem.

Mommy Neither????

http://youtube.com/watch?v=jKxNBsEPRms

There is the link to the video on youtube for those that dont have Quicktime.

Ahhhh! Tomorrow is the big day! We are just soooo excited. I feel butterflies in my stomach already. Wish us luck!!!

Lucy is doing alright. The usual minor issues are hanging around. In other news she now knows how to open bifold doors so my closets are no longer safe. Darn it!

Funny conversation with Little Zac this morning:
Zac: Mommy is your name Mommy Cogburn or Mommy Catherine? (hes referring to my FULL name)
Me: Well my name is neither.
Zac: Your name is Mommy Neither?
Hahahaha! Kids are so literal! Too funny!

A new link...

http://gallery.mac.com/rebecca.stewart1#100000
An extremely informative movie. You do need Quicktime to run it, but installing that is easy and is worth it :)
Thanks!

Why is my baby like a T-rex?

Remember in the movie "Jurassic Park" one of the dinosaur experts was saying how the T-Rex has extremely poor vision and that as long as you don't move or make a sound he cant see you? Well Lucy is pretty much the same way in the nighttime.
I STILL habitually check to make sure Lucy is breathing before I go to bed at night. Last night I went in to check on her as usual and discovered she had removed the lower half of her jammies. I am sure for most toddlers this is not a big deal, but for Lucy, it simply meant that by the time she woke up in the morning she would have stripped naked- leaving me with an extremely disgusting set of sheets by morning once nature takes its course.
I stood in the dark, debating whether it would be worth it to awaken her to put her jammies back on. Sure enough, while I stood in the dark trying to make my decision, that little stinker opened her eyes and looked right at me. I froze, my hands directly over her (I had been reaching for the jammies) and she blinked several times. I remembered the advice of Dr Grant from the movie and just stood VERY very still. Sure enough, she didn't see me and went back to sleep. Whew.
At that stage, I gave up and decided I would have to deal with the risk that she would take off her diaper in the morning before I could get her.

A visit to Grandma and Poppop's

I took the kiddies out to Mom and Dad's house yesterday. I needed to pick up some photos they printed out for me so I figured we might as well make a day trip of it. We busted out the sprinkler which to my surprise Lucy did NOT enjoy. She was terrified of it of all things! So instead, she modeled her cute bathing suit on the swings while Zachary ran around like a maniac in the water. Both kids got out some energy so I cant complain.

Climbing, Falling...

Today has been a pretty good day. Lucy didn't have any episodes of waking up and gasping from her sleep, so that is always good news. She figured out how to get out of her crib yesterday morning, much to my surprise. I opened the door and there she stood, looking as confused as I did about how on earth she got out of there. She also figured out how to get around the baby gate leading to the upstairs. All she does is climb up the banister and slip through the rails! Nothing can contain this child these days!
On the health front things aren't too bad. The nose still runneth over and her skin is still pretty messy, but she doesn't seem so obviously sick to the naked eye as she did a few days ago. I will take it all as a small triumph for the week.

No! Not sleep!

Lucy went back the having the gasping episodes while she sleeps today. She woke up from her nap gasping and screaming hysterically twice today. I ran up the stairs to comfort her and she was soaked through and through with sweat. I have no idea what could be going on. It sounds like it could be apnea but she doesn't snore. Whatever it is, its scaring her to death and it now takes some coaxing to get her into the bed anymore. I don't blame her.
I feel the continuous need to go upstairs and check on her every 5 seconds to make sure she is breathing, so no one is getting any sleep around here. I am hoping that Dr Wood may be able to reveal the underlying problem here when we see him in 9 days (woo hoo! Notice the countdown to the right)

Poor Kiddo

Poor Lu :( She feels so bad. Her eyes are red, her nose is running and her skin is rashy from head to toe. She has torn her skin up all over again. I have no idea what is setting her off.

A not-so-fabulous day with 5 under 5...

Today was a long long long day. I babysat for 3 additional children today which landed me with 5 children under the age of 5. By the end of the day I had changed 5 poopy diapers (varying in degrees of solidity and some containing various chunks of food- gag), 2 kids missed their nap, one child ended up nearly loosing an eye, I tossed out 1/2 a lb of uneaten broccoli, I said the word "shush" 175 times between the hours of 1:30 and 3:30, I used 1/2 a roll of TP wiping Lucy's very runny nose, and I sent one kid home with a lump on the noggin I think. But as the highlight of my day one kiddo screamed when it was time to leave because he likes it here so much and Little Zac passed out on the couch by about 6:30. So here I sit, alive, and with extra money in hand. 5 children had fun today (mostly) and that's all that matters.

Lucy is an absolute mess today. Her nose is a nonstop faucet, her eyes are completely rimmed red, her skin is blotchy with "spots" on various areas of her body, and she looks like she hasn't slept in days (when she actually slept until 8:30 this morning). I feel really bad for her, and I don't even know whats making her feel so sick. She hasn't really spent a lot of time outside recently or anything like that.

Ahhhh, Organic!

Tonight we are testing out some organic sheets with Lucy. Every morning she wakes up with a lot of general skin irritation so as a last resort we are giving this a shot before we see the new specialist on the 22nd. I managed to find them at a very reasonable price on clearance at Pottery Barn Kids, which was a bonus. We also switched to a non-toxic laundry detergent in hopes of helping her get more comfortable.

I just cant imagine how uncomfortable she must be all the time. She digs at her skin sometimes to the point she tears herself up. In areas of her skin where elastic bands from her clothing sit, she can develop blisters and lesions. It all seems like part of the reason Lucy can get downright mean with frustration at times. I cant blame her.

I do my best to keep her in mostly 100% cotton, one piece outfits that fit loosely, but we just don't have THAT many outfits like that for her. I am trying to keep her comfort in mind while I stockpile her fall/winter wardrobe for this coming season.

Dance Party!

Just clowning around the house last night(turn on your volume for the full effect). Notice Lucy's exceptional RiverDance moves. You dont even want to see the sequel to this movie, which includes an excerpt with Daddy doing The Worm.

Things are otherwise going just fine. Lucy is bouncing back from an accidental exposure to some food product over the holiday weekend but is nearly at 100% again. We have accepted that these accidents will happen and are just going to be a normal part of life for us.

Otherwise we are counting down the days to Lucy's appointment on the 22nd.

http://s127.photobucket.com/albums/p138/littlemommaC/?action=view&current=0401010130-1.flv

Theres a link to the video because it doesnt seem to be working above darnit.

Well this is a new one....

Lucy had a run in with a cup that had some milk in it this morning. Okay so she didn't really "run" into it but she attempted to drink from a glass that had been left out on the desk and dumped it all over her chin and chest. She came upstairs and her shirt was soaked through. I immediately pulled off her shirt but the skin on her chest had begun to raise and blister. The pictures of course do the rash no justice.

In the past, Lucy has had an anaphylactic reaction to milk product after ingesting it. To the best of my knowledge she is not so sensitive that she is contact reactive. According to her allergy tests she is only a mild positive to milk.

However, Lucy defies authority at every turn. So I suppose I am going to have to bump up the security on the milk around this house.

So, we moved...

I hope you have moved with us :) I needed to change our location because the old page was going to cost money and why pay when I can have it for free! Hopefully everyone will enjoy our new blog as much as they did the old one and we can keep things going. The sidebar has some basic info that is an ongoing work and photos/videos will now directly appear in the posts instead of in a seperate folder. Things arent as "cushy" here I guess but I am sure we can get used to it and make some butt dents at our new web location.