From the perspective of a 5 yr old...

One of the coolest presents Zachary got for Christmas this year was the Fisher Price Kid Tough Digital Camera. I snagged a 60% off deal on it from Amazon and felt pretty good about helping his Christmas dreams comes true at a bargain price. This present gives us interesting insight on exactly what my 5 yr old does all day long and exactly what he looks at all day long. Enjoy:

When I first reviewed the photos, I thought "well, crap, its really sad that this is what is in his face all day long."

Then Lucy took over the camera and insisted that the front of the camera was indeed the back and that the lens was a telescopic looking glass- hence 34 photos of her face at extremely close range:

But there were some highlights. Heck, I think some of these could be passed off as art in some hoity toity gallery in New York. Okay not really, but they do remind me of Pop Art.

THE END.

We started a trial of sugar with Lucy this week. We were supposed to start it with lollipops back in November/Early December but Lu got that infection that took us right up to her birthday and the holidays. I didn't want to attempt a challenge at that point and have her fail- ruining the fun times for all. We are on day 3 and so far it seems okay. The first day she ended up with an explosive diaper but later I realized that was because she had eaten some Styrofoam balls the day before (ew!). So we are going to keep trucking along with the sugar, hopefully in the end it will open the door for lollipops and cotton candy.

Christmas!

Christmas was a BLAST this year. We stayed home and hosted both breakfast and dinner. My house looked like a toystore exploded on it, but it was a great time for the kiddies! So here are the sharable photos for your enjoyment:

Zachary spreading "Reindeer food" out front Christmas Eve:


Mommy forgot to buy cookie mix so we left Santa brownies this year:



Before:


Before opening:

Lucy and Elmo Live- which is really cool, hes very interactive. Lucy thinks hes real and talks to him all the time! Its a hoot!

Zachary and his favorite gift- Hulk Hands. They make crushing sounds when you punch something. Also a great tool for taking out your aggressions on your spouse :)

After:

Lucy all dolled up!

Zachary wearing his "Pop Pop" shirt and playing doctor:

Lucy playing coy with the camera:

Happy 2nd Birthday Lucy!!

Thats just a few of my favorites since the beginning of Lu!

In plain sight

Every Christmas its a conundrum deciding where to hide the presents until the big day. There is no privacy in this house, and really no off limits areas to the kids- so it gets tougher the older they get. This year I decided to be obvious about it. The picture on the left is my master bedroom closet. And what can you guess is hiding underneath that lumpy inconspicuous pile of blankets??? I cant tell you how many times the kids have gone in that closet and never bothered to even look! Its downright hilarious that the best hiding place of all turned out to be in plain sight. Only a week to go with our presents nesting in their special "spot"! I am crossing my fingers they don't catch on!

Lucy decided to take on her official "2" attitude today. Everything was a heartbreak if it didn't go her way. I mean EVERYTHING. When mommy decided to fold laundry she fell to her knees and cried to the heavens about it. When mommy wouldn't let her sit on her lap while she sipped burning hot tea, she threw herself on the floor. When mommy watched the news instead of her favorite "Max and Ruby" for the 3rd time today, well she gave that mean ole mommy a piece of her mind! It was ridiculous.....and pretty funny. I tried not to laugh at her but it was so hard with her being that dramatic. I hope this is a passing thing and not her permanent frame of mind until her 3rd birthday!

She had fun

Lucy's birthday get-together yesterday was great! She had a very good time playing with her brother and cousins. She looked like the perfect princess in her tutu skirt and was a VERY happy mini-momma when she got the Rose Petal Cottage. She even got to blow out the sugar cookie candle after we all sang Happy Birthday! I was so disappointed that we were celebrating ANOTHER birthday without cake, but Lucy didnt seem to mind at all- so why should I?

Lucy's actual birthday isnt until the 18th, which also happens to be my 6th wedding anniversary!

And we were up til 4am!

This gets so old. Anytime we visit someone else's house Lucy comes back with a reaction. Whether its animal hair, dust mites in the air, or some other allergen, we have no clue. We know she reacts at some houses but not at others. Either way its making it so hard to take her anywhere. Our doctor told us to simply stop taking her to other people's houses for this reason, but I fear the whole "boy in a bubble" issue coming up. Either way its so disappointing she has to pay a price when she wants to have fun.
We spent a GREAT evening with some friends of ours last night, doing our usual Christmas time get together. Came home and by 11:30 Lucy was up howling in pain. She really was in agony. She was screaming hysterically and I had a hard time getting her to stop. She recited her usual "My belly, my belly" and crammed her fists into her gut as hard as she could. I gave her some Tylenol and laid on the sofa with her until she fell asleep. She kept waking up to cry some more and clutch her belly, but by around 4 am I was able to get her back into her own bed for some sleep. Around 11 this morning she had a butt burning poop and shes been fine ever since.
We are having company today for her upcoming birthday and I just hope she can catch enough of a nap to enjoy herself.

Funny stuff...

Last night was sleepless for me, for once, because of my own stomach pain. I guess I caught a bug or something and my stomach was giving me a fit. By morning I was pretty tired and irritable. I fully planned to spend much of my morning snuggling on the couch with Lu after Zachary had gone off to school. Getting him out the door turned out to be a problem.

Of course, its pouring rain out this morning and our backyard(we have to cross through to get to the bus stop) is practically marsh land. After getting Zachary loaded up with all his stuff and wearing a pretty gosh darn cute outfit, we headed out the back door. My last words to him were "Dont run the grass is slippery." Well that was his cue to start running. After about 10 feet....slip, splash! He was down on his back completely soaked through! Ahhhhh!

I hadnt even made it 3 steps from the door before we headed back in to get a change of clothes. I rushed to hopefully have him catch the bus, but that didnt happen. I took both kids back out front, loaded Lu in her car seat, then tried to load Zachary into his booster....squish. Turns out his jacket had gotten super wet and the inner material was soaked with muddy water that had now saturated the NEW pair of pants I put him in. So, BACK into the house we went.

I changed his pants, AGAIN, and loaded the kids into the van AGAIN. I am proud to say Zachary arrived at school on time with exactly 60 seconds to spare!

Shhhhh...

Its very very quiet! Holy cow nothing has been going on for the last few days and for once there are no doctors appointments coming up! The only thing happening here is Christmas, Christmas, and more Christmas prep stuff! So forgive the lack of posts, take it as a good sign! :)

The Holidays are upon us...

Yay!

Lucy's appointment today went well! Her infection cleared up AND her lungs are clear so we can start tapering down her asthma medications! Yay! Good news! We also got a brand spankin' new super cool spacer for her inhaler with a duck mask from the doctor for free.

Tired!

Okay, I am ready for fall and winter to be over! Its the worst season around this house.
I took Lucy out to my parent's yesterday to pick up an air purifier for Lucy's room. She did great all afternoon and played with Jack(the dog) most of the time. It was great. But sure enough, we got home and within an hour of putting her to bed she was up. She was screaming and jabbing her fists into her stomach. She kept crying, "My belly, my belly! It hurts, it hurts!" I felt so bad for her. I finally took her downstairs and laid her on my chest to sleep on the sofa. She passed out for a little while but kept waking up to scream out and then punch herself in the stomach some more. It went on and on until about 2 am. I put her back into her bed and she slept until about 6, then woke up crying again and went down to sleep until about 8am. Later in the morning she had an explosive diaper, but seemed okay the rest of the day.
Now that she's older it gets harder and harder to see her so sick. As a baby she just cried and cried- but that's what babies do. It was easier to not feel so affected by it. Lucy can vocalize her pain now, and will point to her stomach and cry "Belly, belly, it hurts!"
Hopefully this was just a passing thing and tonight will be much much better. We return to the pediatrician to check on her infection and asthma on Thursday.

He would apparently starve without me...

My husband cant make a frozen pizza without my assistance. LOL. Seriously, the man managed to put it in the oven and wait the instucted number of minutes- but had to ask me if it was done or not........Is the crust brown and the cheese melted, sweetie? Its done. Hahaha! I had to laugh.
Our Thanksgiving was good. The kiddies always enjoy a visit to Mom Mom's (Aunt Dawn) and Unc-lu's house. Lucy admired Aunt Dawn's variety of porcelin dolls. She was quite a mommy to them for the afternoon.
I gave Zachary the choice for the day- he could eat whatever he wanted as long as he understood some of it may make his belly hurt the next day. Surprisingly he turned down all the rolls, sweets, and tasty stuff. He chose not to eat those foods and risk the stomach trouble. I was so surprised/proud of him for making such a responsible choice for himself. I wanted to at least give him the chance to eat some of his "forbidden" foods. I feel so bad that he can't have these things on special holidays.
Lucy's okay I guess. Shes back to messy diapers with a serious case of diaper rash. Her formula intake is down about 5 or 6 ounces today- which is alot considering she only eats 24 oz/day and that is the minimum amount doctors want her to consume. Shes coughing like an emphesematic old lady again so we are back to Xopenex every 3 hours on top of the other steroids she needs for maintanence.
We return to the ped on the 4th to see if we can wean her down off some of the medicines so I hope she can improve herself before then.

Happy Thanksgiving!

Hope it was a good one for everyone!

Long...Bad...Day

At this point I am full on alchohol, cool whip, and 100 calorie pack Lorna Doone cookies- I needed to drown my stresses now that Lu is sleeping :)
Today was the never ending day of hell. Ugh. Nothing made Lucy happy- AT ALL. She basically reverted back to her old "colicky" ways for most of the day. Zach worked all day long so I had to go it alone and by 7pm my patience was wearing thin. Its just been one thing after another the last few weeks and Lucy is getting tired of it. I did snag some peace this evening by putting her in the carrier and wearing her around the house for a 1/2 hour. What would I do without my mei tai baby carrier??? Its been saving my sanity since Lu was a tiny thing.
I dont even want to guess whats going on with her. The infection? An allergy? Is she failing her new medicine? Overly jacked up from the massive amounts of steroids for her asthma? Either way I will hope its temporary and that tomorrow will be better...

Ah, a nice Saturday

First, The Zac's spent the day at Joy's and got the heat fixed in Big Zac's car! Whoo hoo! Poor Zac was driving to work at 3 am with no heat. Turns out that heat is NOT a luxury but instead a necessity!
Lu and I spend the day at home so she could hopefully recuperate a little more after being sick this week. She refused to nap, saying her belly hurt and was glued to the side of me all day. I didn't even get to pee by myself! She got this rash all over her face today too. No idea what it is. It started off as a little spot and by evening it had engulfed the entire bottom half of her face. Hopefully it will have gone away by tomorrow. I have been dying to get professional pictures taken of her because it hasn't been done since she was about 6 months old. Every time I even think about taking her in she busts out in some sort of rash! Grr! Maybe if I think about NOT taking her in to get pictures the rash will magically go away! ;)
Tonight I got a very very special treat: I went to dinner with a mom from one of my support groups for kids with Eos. She has an almost 5 yr old little girl with the same thing Lucy has. Her daughter eats beef and chicken along with formula. Previously she had other foods, but recently they found out she was not tolerating them as they thought and she had to have them taken away :( Poor kiddo! It was so amazing talking to a mom who knows exactly what my entire life is all about. We sat in Red Lobster, enjoying the fact we were actually eating in a restaurant without worrying someone might go into anaphalactic shock at any moment, talking about medications, formulas, poop and barf! LOL! It was a great time. We could spend all day talking and sharing information. Its just such a relief to get a little time with another mom that gets the daily struggles we go through here.

Update

We saw the pediatrician this morning after braving the winter blast(hehe!). The doctor decided that although Lucy's ear hadn't improved, we would stay off of antibiotics because of her adverse reaction to the amoxicillin. If Lucy shows signs of worsening we have to be back in the office within 24 hours.
She took a listen to Lucy's lungs and they had improved, but she was still wheezing. We are going to return to the pediatrician in just 2 more weeks to see if she can be taken off her high dose of steroids(or at least if we can begin to wean her down). If she is still wheezing even on the dosage she is at in 2 weeks, I don't even know what the next option is. The doctor was very clear that Lucy's asthma is severe enough that we will be in and out of the office until spring so as to ensure Lucy has proper respiratory function.
I called my mom and am going to borrow an air purifier to keep in Lucy's room to hopefully help.
Before we left, Lucy waved bye bye to the doctor with a big grin on her face. The doctor said to me, "Shes such an amazing little girl. After all she has gone through she is still just as happy and pleasant as could be. No one would ever guess she has been sick a day in her life. Her mommy does a good job." That was nice. She didn't have to say that. It was like getting a pat on the back for a job well done. I am so proud of my little girl.

Nope.

This medicine is a no go. Thats for sure. The last 24 hours with Lu have stunk big time. I am really eager to ride out the clock on this reaction and get it over with. Its 10:30pm and Lucy has already been up screaming and grabbing her stomach. It will be a LONG night for the both of us. I think I may start looking for a bed to put in her room so I have somewhere to sleep....

Tomorrow we go back to the pediatrician for a follow up to check on her ear and her breathing. Shes definately doing much much better in the respiratory area(and her screams confirm that!). I will post back when we return tomorrow!

Update from the Ped

I inevitably had to take Lucy to the doctor this morning. She was still struggling to breathe and requiring the use of her inhaler constantly, so I decided it was best she was seen.

The doctor said she has a moderate ear infection that she wouldn't normally treat with antibiotics, but because its Lucy she wants to jump on it NOW. She also thinks that the respiratory stuff is a serious case of seasonal allergies setting off her reflux. Closing the windows and turning on the heat puts a whole different variety of junk in the air. So we are going back on the massive amount of inhaled steroids we were on last winter until, at the least, March. She also wants to see us again on Friday to check her ears and breathing, and see us every 6 months for weight checks. Lucy hovers in the 10th %tile for weight and height usually and with her being on a formula only diet she could easily not be taking enough calories- so she feels its best we begin monitoring her weight more closely at this point.

I am hopeful Lucy will tolerate her new antibiotic so she can feel better!! Keep your fingers crossed for us.

Oh boy

Lucy is having some respiratory problems. She is working SUPER hard to breathe and its progressed really really fast. She was fine this morning and by bedtime was wheezing, coughing, gagging, and struggling to talk. I don't know if its a virus, infection, or her asthma. I gave her some Xopenex and that stopped the wheezing but did nothing to improve her ability to breathe. Shes exhausted. I am hoping she will improve overnight as fast she worsened today, but if not off to the pediatrician we will go!

Lazy Sunday!

Today was a LAZY day! We spent the day in sweats and jammies. Why the heck not? The only thing I accomplished today was a small bit of Christmas shopping this morning. The kids hung out with movies, coloring, and video games. It was a nice day.(you can see Zachary concentrating so VERY very hard on his Leapster game)

And the good news? Lucy is tolerating her medicine!!!! Yesterday afternoon the crankies went away and she stopped gorging on her formula. I was completely shocked! I really thought we were in for a long long haul on our quest for medicine. As I said before, the meds have completely gotten rid of the hives on her lips(yay!) and it seems to be reducing the severity of her dermatographism(more yay!).

I will call our allergist tomorrow to update him and see if he wants to add in another medicine to get the dermatographism under better control. After that its off to trial lollipops!!!

An update on the new medicine

Above is a photo of a pretty similar affect light stroking can have on Lucy's skin when she's flaring. Obviously its NOT her arm, but I dont have the photos of her skin on the computer anymore so this will have to do. :)

I am not really ready to say nay or yay on Lucy's new medicine. Its completely eliminated the hives on her lips- she looks so pretty! Haha! And I have seen a reduction in the dermatographism. I put it to the test tonight and gave her a bath- she hived up but they were lighter and lasted half as long as they normally would. So that is good news. Unfortunately Lucy has been a real grouch all day long, has been drinking double her usual formula intake(her typical soothing method), and has some small rashy dots on her face. Its possible her body is starting to react to the new medicine. If that's the case, its pretty unfortunate, since we are seeing some relief in many of the skin issues Lucy deals with on a daily basis. I am not going to pull the plug just yet, my goal is to keep on until at least Monday no matter what. I want to be 100% positive its a fail before I pull it. Keep your fingers crossed and prayers going that Lucy will tolerate this medicine!!!

Appt Update

We saw our allergist, Dr S this morning. Lucy hadn't had an appointment with him in quite a long while so we had a lot of catching up to do.
Dr S feels that Lucy's "pain attacks" are stemming from a release of too much histamine in her system. Its causing a major flare up of her dermatographism which basically makes her feel like she has bugs crawling under her skin. I guess that would drive anyone crazy.(more info on dermatographism here)
He also said that the sores on Lucy's lips are hives that have burst and then bled. Which is all the more reason its critical we get Lucy on some medication to help calm her system down.
So we are going to push forward with medication and assume the risk that it may aggravate her GI system. Hopefully she will successfully tolerate it and get some relief.
We also talked about Lucy's "cravings" for non food items- like dirt, hair, and paper. He said that we need to give something a trial run in order to get her some oral stimulation. There is a specific brand of lollipop that is devoid of food proteins that most children like Lucy seem to tolerate. So once Lucy proves she can tolerate her new medicine we will trial these specific lollipops. Ooooh!

Off to the Allergist

I took Lucy back to the park this morning with our friends and she had another pain attack right there in the park. It was terrible. She was all curled up in my arms just moaning. We beelined back to the house because I couldn't get her to stop and she really was just miserable. I ended up having to carry her and push the stroller with one hand.
I called our allergist and he wants to see her so we can discuss things and what(if anything) we are going to do about this. Typically this thing would pass, but I cant figure out exactly what is setting her off- so she potentially is just being exposed to something over and over and I don't know it. Hope and pray that it is NOT her formula again. We exhausted all our options for formulas last year when this happened and the one she is on now is the ONLY one she was able to tolerate.
We should be getting an appointment with Dr. S. tomorrow!

Eh.

We are hanging in there.
Friday was a good day for Lu. We spent almost the entire morning at the park with friends since it was SO nice out. She was a very happy girl!
Today has been alright. Lucy has had a nosebleed all day and is really congested. She refused her nap, waking up screaming just 30 mins into it. She seems really exhausted now. I gave her a bath and her dermographia was at it again- I combed her hair and it left her shoulders looking like she was mauled by a cat.

Not so good day

Lucy definitely didn't feel good this morning. We went to the grocery store and when we got back she had an episode of severe stomach pain that ripped my heart out. She was screaming and wrenching her body around in agony. I felt so bad, there was just nothing I could do for her but rub her back and try to console her as much as she would let me. Its been a long long while since she last had an episode like this and I hate having to watch. I cant imagine how much pain she is in. :( I hate that she has to go through this.

Boogers EVERYWHERE!!!

Lucy has a nasty head cold today. Shes wearing the ever popular booger moustache that is just so NOT cute. Hopefully it will pass quickly!
Lucy's desperation for food has reached a new height. She now eats the carpet. Its gross. She drops to the floor and opens her mouth trying to take a bite out of the flooring. She sits up with a mouth full of hair and carpet fiber, exclaiming "Mmmm, good!!" Its seriously nasty! With her eating all of these "non food" items shes been sick with her stomach quite a bit. This morning she rubbed her belly and said "It hurts, it hurts." and laid on the sofa for a while. I felt so sad for her, but secretly relieved that shes at an age she can now vocalize her pain in a way other than screaming for 12 hours a day on end.
Other than that it just couldn't be quieter around here. So far this season is turning out to be vastly different than last year's. This time a year ago Lucy was very very sick and in a great deal of pain on a constant basis. Maybe we are turning the corner with Lucy's health.

Halloween

Halloween was a success! My little monkey and a bannana had fun trick or treating! Zachary thought it was hilarious to be a bannana and I figure the kids will only let me dress them up in coordinating costumes for so long, so why not? Its funny!

Neither of the kiddos could eat the candy they got trick or treating, so I swapped them out and gave them some "prizes". Little Zac got some allergen free candy and a new Transformer, while Lu settled for a couple My Little Ponies. Neither seemed disappointed at all about the fact they couldnt have the candy. Honestly, the kids were more thrilled to hand out candy to all the trick or treaters.

Lu seems to be doing a bit better. She still woke up several times last night, but her mood yesterday was much improved. (yay!)

Minor Flaring

Something has Lucy all flared up a bit. Shes been having messy diapers(and some bad gas that she thinks is hilarious) and shes pretty testy in the mood department. Shes been up several nights this week which hasn't been fun. Tonight I was giving her a bath and realized her dermographia was all flared up. She had some patches of hives and quite a few scratch marks all over her.
I don't know what has her flared up because she has gone back to eating "non-food" items around the house again. The other day I caught her eating the foam out of the leather chair in our basement. Later, she came upstairs carrying a Nerf ball and biting into it like an apple. And once again she is back to eating paper.
In any event, this hopefully will be short lived since tomorrow is Halloween!

There it is....

A month's worth of liquid gold delivered right to our front door this morning!

Thank you! Thank you!!!

Wow wow wow!!!! Holy cow! Apria just called me- our insurance is covering 90% of our formula!!!!!!!!!!!!!!!!!!!!!!!!!!! They are shipping us out one months worth for just 93$!!!!!!!!! Ahhhhhhhhhhhhhhhhhhh! Thank you, God, thank you!!! Thank you everyone who prayed for us and kept our family in your thoughts!!!! I just cant believe this is happening!!! When the woman called I just started bawling on the phone!!! I feel so much relief right now I just cant put it into words!!!!

Punkin' Patch Fun

We visited a pumpkin patch and corn maze this weekend. Lots of fun for all! Lucy was very very serious about her pumpkin selections and Zachary liked zipping through the rows and rows of corn.

We also received our rejection letter from the insurance company regarding our request for formula coverage again. Pretty disheartening. At this point our desperation for coverage is so high that I am no where near giving up and, as a matter of fact, have already climbed back up on the horse. I was on the phone for literally three hours yesterday trying to make headway. I feel very optimistic that this time may be the charm! I actually was able to get someone from the insurance company on the phone that was helpful about sharing very very specific info on the approval process and what I needed to provide. I am back to getting my ducks in a row and have been harassing doctors offices for the last 2 days trying to get all the correct info faxed out. I also had to find a DME(durable medical equipment supplier) that was approved by our insurer and could supply us with Neocate. I found one called Apria who actually takes care of the majority of the complicated codes and information our insurance company is insisting on.

Once our insurance has this hoard of information from all of the doctors and Apria THEN they will re-determine if we are covered.