Fried

We made it home, burnt to a crisp and all. Apparently 4 hours on the beach is our skins' maximum time in the sun before burning. Its okay though, we had a good time playing in the sand and water! Well worth it in my mind.
Vacation went well. Lu's stomach is continuing to give her trouble. She is just not tolerating feeds larger than 4 ounces at a time and her stomach is giving her fits at times even still. She spent quite a bit of our trip not feeling well at all. She fights it very hard, trying not to let it stop her for a moment. We took her on a walk on the boardwalk our first night there and she struggled to walk with her belly hurting so badly. I will give her credit, she refused any help and threw a fit when Daddy forced her to ride on his shoulders so we could get back to our place.
I am really not sure why Lucy's stomach is not cooperating with her. I am sort of praying it will all pass and that she will wake up one morning just fine and dandy. Its been known to happen with Lucy. Either way, we are set to head out for Family Camping tomorrow and I am hoping she does well.

*as I expected my camera is still not working and I can't share our vacation photos :( Its okay feel free to cry about it, I sure did! lol

Wheee!

Its time for vacay! Its the first time ever that we are spending nearly ALL of Big Zach's vacation actually ON vacation. Normally the best we can do is go away for a weekend and then putter around the house the rest of the time. Not this time! First, we have our beach vacation and then we come back and head out again for family camping. Yay!! Maybe when we get back my camera will cooperate and let me post up pictures to share....

Finally!!

I finally got a call from Dr S. Something happened and the report from the lab never reached his desk, so he apologized for not getting them to me ASAP. Dr S is always amazing about returning phone calls right away so I knew something was amiss when he hadn't called. I didn't actually get to speak to him since he happened to call while I was in the shower. Figures.
But anyway, everything looked good, which was a relief. I had been concerned about Lucy's nutrition since her formula intake is pretty poor but it seems that everything is just fine in that department. Also, all of the allergen tests came back with nothing, so there are no clues there. The only positive was that her numbers for milk came down, which hopefully means she no longer has a serious reaction to it. We consider milk dangerous and scary around here and it would be nice to not have to worry about it so much.
The fact that Lucy's blood work gave us no clues on which foods to possibly try is typical, and it means we will have to just pick a food and cross our fingers. The doc pretty much gave me an open door to pick whatever food I want to give a go. Dr S said Lucy sets her own curve when it comes to reactions so the best we can do is guess where to go next.
I think I am open to trying a food in the beginning of September, but if she should fail I am going to be adamant that we take off a year or even more. I think if by age 3(December) we are completely unsuccessful in getting a single food, then its time to accept Lucy's limitations with what they are and go on with life for a while.

no news is....no news

I have still been unsuccessful in my attempts to get a hold of our doctor. Its frustrating as all heck and I am starting to get annoyed. I will make another call tomorrow and leave another message. Bah!

The good news is that I got Lucy's diarrhea under control and we haven't had any episodes of that for the last several days. She just wasn't tolerating large feedings all at once. I charted her feeds and episodes of tummy trouble and it became clear that anytime she drank over a certain amount all at once, she would get sick. So now we are doing 4 ounce feedings every 2 hours or so and that is keeping her her gut under control. I am not sure what brought on the sudden intolerance to large feedings, but I am going to give her a try again later in the week.
Also good news is that I think I have finally found a pair of shoes that Lucy can wear without tearing up her skin. I searched high and low and finally found a pair of shoes made from suede and not canvas or leather. The suede is soft so that there are no hard or rough edges rubbing against Lucy's foot. She tried out her new shoes today at the store and just ran her little heart out. Yay!
I tried to upload pictures to share(because really these shoes are just so darn cute!) but my camera isn't working again. The port to put in the cord that links it to the computer is non functional, so I have no idea if I will ever be able to share photos again at all. Its very disappointing.

I will update once I get a hold of our doc! Thanks for checking in on Lucy!

Annoyed? Yes.

Our cable, internet and phone have been out since Saturday. That in itself is not all that frustrating, but what is frustrating is dealing with the cable company.

Everything shut down on Saturday and we called to see if it could be fixed over the phone, sure enough it couldn't, so we set up a service appointment for Sunday. I must say this company has the most vague time slot ever for a service call- anytime between 8am and 8pm we were told. What?! Seriously, this can't be narrowed down any further?? No.

Zach called the cable company on Sunday around 11 to see if they could give us a better clue as to when they would be out. After all, it was Sunday and we were trapped at home with 2 kids and little in the way of entertainment. They told Zach that the technician would be here before 8pm. Great.

By about 5pm the guy still hadn't come and my husband was getting steamed. He called once again.....and shockingly was told the tech WASN'T coming at all!!! Turns out they don't even have techs in this area on Sundays, the entire appointment was a mistake!!! So my husband's blood was boiling at that point because we have wasted an entire day of our lives, and after a brief temper tantrum we were awarded a 32$ credit on our bill and promised once again that a tech would come out on Monday....between 8am and 8pm. Yippeee...

Fortunately, I had a playdate set up at my house for the kids this morning so that kept us entertained while we waited. The tech man showed up around 3:30 and discovered that some piece of our equipment was shot due to a recent lightening storm and a whole new line would need to be dug out for us to get service. In the meantime we are hooked up to our neighbors cable line to get service until things can be repaired. This works out well for our neighbors, who usually only have basic-basic cable; they are now receiving the full line of cable channels so that we can get our stations as well. A win- win!

First thing on my list of calls to make now that we have a phone again is to call Dr S tomorrow and find out where our test results are.

Still waiting

So, no I haven't heard from the doctor yet. I haven't gotten word yet on her test results. I thought for sure he would call today. Dr S ALWAYS calls the second he gets the results. So I will just have to keep waiting. I am also crossing my fingers that Dr S isn't off on a 3 day weekend this weekend, because that means I am not getting the results til Monday at best.
Lu has been sick since Monday. Shes had a nasty case of "The Big D" and her rear end is fried. Shes walking around like a cowboy that just got off a horse and complaining her butt hurts. Shes had some trouble sleeping and one day she will wake up screaming, then sleep for 4 hours in the afternoon. I don't know what it is. We were outside at the church picnic all day Sunday so at first I thought it was just the heat, but as it continued I thought maybe it was all the pool water she swallowed. Its still going on so I don't think its the pool water. I suspected that it was the increase in her meds, its possible it pushed her over her threshold, so I pulled her meds to see where we get since we are going to be home in the AC all day the next couple days.
So for now I will wait on the test results and wait on all this tummy trouble to stop for Lu!

Peas and Carrots

Being a parent of two kids has been drastically different from being a parent of one kid. When we found out we were expecting #2 we thought, "Well this should be such a smooth and easy transition. We know all about being parents now, so it wont be as hard as when we brought Zachary home." Of course, when we brought Lucy home our house looked like a toy store exploded on it and once again Zach and I looked like zombies. The fairy tale impression of having two sweet angelic children in a spotlessly clean house had quickly slipped away within Lucy's first 24 hours. Having two children moving in opposite directions at all hours of the day and night was exhausting. Duh. What a surprise. I look back and see how dumb we were for thinking the whole thing would be blatantly easier. Parenting is complicated....after all we are raising people! As it turns out parenting two children is no easier than parenting one, and parenting one is pretty darn complicated.
Whats funny is the drastically different way in which we parent our first and our second. For example-
Your baby starts to cry:
With baby #1: you run to him immediately and frantically start to check for a wet diaper, potential hunger(even though you just fed him 10 mins ago), or gas and then dispense Mylicon drops just to be sure and rock him back to sleep while singing sweet lullabies.
With baby #2: you finish getting the gum out of kid #1's hair, kick a path through the toys to baby #2 and THEN rock the baby back to sleep while humming the theme song to "Dora the Explorer" so you can finish washing the crayon marks off your wall.
Whether this difference in parenting is due to a dramatic difference in the personalities of 1st and 2nd children or due to the fact things have to be changed when there are 2 little beings that need love, I don't know- its probably a little of both.
My babies are like night and day or peas and carrots (which ever you prefer). Zachary is my collected "Little Dude" who is a ham at heart and usually very little trouble- his aim is to please and he rarely questions authority. He can find the humor in just about anything and thinks that everyone is his best friend. He tries hard not to complain even in the most difficult of situations, like, for example when he caught a nasty stomach bug (seriously the stomach bug from hell)a year or so back. He was throwing up for hours over and over and over again. He laid underneath a blanket watching movies, sitting up to puke in his bucket and then laying back down again without so much as a whimper. I was amazed because when I caught the same thing the next day I felt so bad that even I was moaning all day as my stomach lurched back and forth like the tides of the sea.
Lucy is my wild child. Shes willful and dramatic, but a loving mommy to everyone and everything. She's determined to fight to the death on just about anything and ALWAYS questions authority. Her personality is so huge it usually precedes her through the front door and I am pretty sure a stranger can sense this child is a warrior. Its never been uncommon to see Lucy up all night with stomach pain and then get up at the crack of dawn to "attack" the next day with full steam. Its also never been uncommon to see her fall down, scrape her knee and then behave as though shes been stabbed through the heart until the moment someone offers her a lollipop.
I guess it was just the luck of the draw that I would get TWO polar opposite children with unique parenting needs. They both crack me up to no end. They pull me in different directions so hard that just when I think I cant do it, they swoop back in and pick me up with a huge hug and a kiss. I am lucky like that I guess.

Thinking, thinking, thinking

I have been trying to make my mind up as to whether or not we want to trail another food before Dr S. calls with her test results. I want to have a "firm and final" answer to give him, instead of being persuaded into one on the spot. There is a lot to consider and there is no right or wrong answer here. The bottom line- what is in Lucy's best interest- isn't even clear.
The only thing I AM clear on is that after this round of debate, we will be taking a long hiatus from any thoughts of another food challenge for at least a year. We spent the first two years of Lucy's life just trying to get her healthy and happy, only to take off a few months and go right into a challenge, take another few months off and bring us to date. I can accept that Lucy will have a very different life from the average person but what I don't have to accept is that its harder. For Lucy, life without food is just plain easier. We can try and try and try, fail and make life hard for Lucy or we can choose to accept things the way they are and go on with life- enjoying the playground, playdates, the sandbox, riding tricycles, everything a little kid does.
When we saw the world-known specialist last summer he told us that many of the families with children like this will often take off several years so that they can get on with life. They wait until their children are old enough to understand the risk of pain and misery and can help make a decision about what to do.
What I am unclear about is when to throw in the towel. Do we give this one more shot and then take a break, or do we just call it quits for a while now? I really don't know. I'd like to be able to tell Lucy a year from now that we gave it our absolute best shot but in the end her and food weren't meant to be friends. I also don't want to put her through any more misery than I have to.
I should have a few more days before Dr S. calls with her results, and I am sure until then I will continue to debate.

Clear as mud

That was a long visit. With drive time, waiting time, the appointment, blood draw, and checkout we were gone from 1:30 until 5:30 almost. By the time we got home we were both exhausted!
Lu fought the blood draw with all her little might. It took me and three nurses to hold her down and she SCREAMED so loud that the office manager came back to check on us because she assumed her employees must have been doing something wrong. Of course, she only discovered that my daughter just wasn't going down without a fight and the nurses were doing the best they could. I felt so bad for Lu. She was trembling and crying. We do these tests yearly or sometimes more and all I could think was, I CANNOT do this again.
We sat with Dr S for a while and discussed a LOT. I left not feeling 100% clear on anything, but I expected that.
We don't have much more in the option department to help Lucy's fragile and sensitive skin. She really is far above the recommended dosages for the medicine shes on, and we are limited on other medicines because of her belly issues. The current dosage does a good job controlling the dermatographism, but she continues to deal with all around weak skin. We struggle to find shoes that don't blister the skin on her feet and have to select outfits that are loose to prevent elastic waistbands from rubbing sores onto her skin. The heat often will cause her to itch from head to toe and the cold brings about bouts of Raynaud's that leave her in excruciating pain. Her skin has become an issue that affects a number of things we do with Lucy on a daily basis- the clothes she wears, how often she plays outside, etc. We decided that we are going to move her meds up slightly higher and see where we get, we are hoping and praying for an improvement.
We also discussed another food challenge. We try to do one every 6 months, this way she has time to heal and get back to baseline before we try again. We are shooting to start in September, once all the vacations and summer fun are finished. Dr S would like to see us try something else but leaves the final decision up to us. Its so hard to decide. I mean, really, is it worth it with such a slim chance? I don't know.
Dr S. decided that we would repeat Lucy's RAST testing (allergy testing on the blood) and see if that could give us any clues about Lucy's Do Not Try List. The RAST testing wont specifically rule in a food, just because the test says Lucy is not allergic to it doesn't mean Lucy wont still react to it. However, it will tell us when a food is out totally. If the test says she allergic to a food, then we know for certain it is out and we wont waste time on it. RAST testing looks for specific antibodies involved in an allergic reaction to food, but most of Lucy's reactions are what are called CELL MEDIATED reactions- stemming from eosinophils, T-cells, or Mast cells. There are no tests that will reveal foods that Lucy would have a cell mediated response to, the only way to rule them in and out is with a food trial.
So for the moment, we are waiting for her test results to come back before deciding what to do from here. Dr S mentioned a trial of chicken possibly next, but it all depends on her tests. He said they should be back within a week so hopefully they will give us some clues.

Tomorrow is August 5th

See the type of predicaments my precocious dear daughter gets into on a daily basis? She sat in the baby stroller(after being told not to because it would break and trap her inside) and it broke, folding her up inside. She had buckled herself in so she was unable to get out. I came in the room to discover her struggling to hold herself in the seated position to keep from being folded in half! She was mad as heck that I took a photo before helping her, but I thought it was best to document such stubbornness at an early age.
Tomorrow is August 5th, Lucy's doctor appointment. We go in to review her current situation, repeat testing, and decide if we will do another food challenge. I am dreading it to be honest and just want to get it over with. No matter what, whether we trial a food or not, its not going to be fun. If we trial a food we have a slim chance of passing it and risk a rocky few weeks of pain and suffering. If we don't trial a food then its the realization Lucy will turn three with no foods. Not that one food would make things seem oh-so-normal, but its progress nonetheless. Additionally, spending the afternoon with my daughter in a half nelson in order to draw 100 vials of blood is no picnic for anyone.
I will update tomorrow night after the kids go to bed!
*I discovered Twitter the other day and have been trying it out. I can update from my cellphone and have it appear on the right side of this blog. Its kind of cool, not sure how useful it will be, but I will keep it for now.