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!)