Moo Baa La La La

What a week. Lauren had a few horrible nights up with gas pains again then followed those with two nights of *almost* sleeping straight through.

Of course the nights she was up were my nights to be up. The nights she slept were with Kevin. Go figure.

Actually, I have theory on that. Being the mom, I'm hyper sensitive to every noise that comes from either kids' room. Sleeping with Lauren I'm still as vigilant. With her every stir, I stir which then wakes her more thoroughly. Kevin meanwhile sleeps through most little chirps therefore not waking nor waking her each time she fusses in her sleep.

Last night was my night once again and she was up frequently and from 3 - 5 am was completely awake and ready to play. Needless to say, I was NOT impressed. Throughout the night she asked for drinks which these days is a sippy of rice milk. Except last night. When I went to fill her sippy the second time I had to dig for the cartoon rice milk. Given that no one else had been up and I was the only one filling sippies, I must have used regular skim milk for her first refill.

Uh oh.

I was not ready to do a reintroduction test yet.

At mid day today, 12 hours after her regular milk treat, she's been a little extra fussy with some arching and discomfort. She was also extra ready to go for nap.

May not be related. May be completely related. Hence why I was not quite ready for reintroduction. The plan was to wait until we'd had at least a week of gas pain free nights then give her dairy milk for breakfast. This would potentially give us nighttime gas pains which would fall in to what we're familiar with.

So now we wait and see. She may still be miserable tonight or not.

This whole food sensitivity thing is really obnoxious to nail down. Oh for the days of Roman's egg white induced hives. At least it was right there for all to see.

One week down...

One full week dairy free and so far, I think it's working.

This is wonderful news for all of us. While she still wakes up during the night and she still shares some gassy expulsions with us, she isn't up screaming and arching her back.

An interesting side effect of her dietary change is how the size of her abdomen has reduced. We always noticed how big it would get by the end of the day and assumed it was simply how much she was eating. Now that it's disappearing it's very obvious to me how much gas was building up. No wonder she was so uncomfortable and so unhappy.

We'll keep going a while and see how things go as we continue.

Our pediatrician is referring us to an allergist. I asked because I'd like to be able to determine exactly which protein she's reacting to, how severe the reactions are and how the intolerance manifests - what exactly is going on inside that tiny body of hers. From there we can formulate a plan for changing her diet, permanently if need be.

I wonder too if her reflux is tied to the protein issue. And if there are other symptoms we missed. A while ago I noticed rough patches on the backs of her legs and assumed it was dry winter air. Now that it too is disappearing perhaps it's a mild form of eczema that is also clearing up with the dietary change.

I find myself conflicted. I am THRILLED we're getting closer to a solution but I am thoroughly PISSED that no one has taken me seriously to date. I don't want Lauren, or more honestly, ME, to have yet another thing to adjust to but there's a part of me that really wants to be able to go back to all those dismissive medical professionals and oh so vehemently declare, "See? I TOLD you there was something wrong and you didn't listen!"

Rude meets rude

We run a small business on our property. Nothing big but it pays the bills and we're pretty much at capacity.

Today I received a long distance call on the business number with the identi-call listing "SITEDUDE".

I answer in my proper office voice and have the person on the other end, also in business voice say "I found your listing online but see you don't have a website."

"That's correct. We don't have one because we don't need one." I say, a bit defensively, expecting this is a sales call. Realizing I could be incorrect, I continue with, "Well, are you calling about our services or to offer website services?" She huffily replies about a sister who's recently moved to our area and was looking for the service we provide. Based on this response, I know we're not suitable for her which I politely let her know.

She even more huffily replies, "Well I'd have known that if you had a website!" and hangs up on me.

Nice. Now I'm feeling like a heel cause I've pissed someone off but at the same time, she called from "SiteDude" and first thing she said was about a website. Not a question about the services etc, but SiteDude commenting on my lack of website. So yeah. Feel like a heel but perhaps she's just pissed cause I called her out??

I went so far as to call the number on my call display and sure enough, they offer website development services. Thankfully, before I had to extricate myself from the call somehow, the kids had an altercation complete with screaming. The lovely receptionist, who could very well be Miss Huffy, was very understanding as I scrambled to end the call...

Heave ho, heave ho, It's dairy-free we go...

Yesterday's trip to Mac was uneventful. We left home early enough for Lauren to fall asleep in the car which logically put us early for the actual appointment. Ultimately this was beneficial as the clinic hosting our appointment was under construction. We had the time needed to hike around a few extra corridors and not give me my usual "I'm feeling rushed. I hate being late!"

Waiting was reasonable and broken up by Lauren needing "tuke" which is her word for potty time. Of course while we were out of the clinic wandering the extra hall ways in search of the nearest bathroom, the resident currently assigned to our GI guy came looking for us.

This resident seemed a little older than the usual fare and didn't seem that interested in what I had to say. In fact, the entire appointment seemed a bit like I would've been just as well served at a drive through window. Maybe they should've left home early too so they wouldn't feel so rushed...

When Mr GI arrived, he was once again very stand offish. I still get the sense he thinks I'm making things up and simply an over protective mother that wants her kid to see everyone she can. The conversation went something like this.

Him: So you're happy with how things are with regard to Lauren's reflux.

Me: Yes.

Him (dismissively): And overall things are good though a bit of the gas problem still exists...

Me (jumping right in and trying not to be defensive): Well it's more than a bit of a problem and it's starting to affect our quality of life (which it is but sometimes these key words trip doctors "pay attention" meter so I threw them in).

Him (a bit huffily): So you want answers.

Me (firmly): No. I want help FINDING answers and I'm told you're the best guy to help me do that. (brushing ego usually helps...)

Him (little bit joking): That's a lot of pressure.

Me: I'm willing to do whatever it takes. Out of desperation, in the last week we've reduced her milk intake, reduced fats and been giving her Ovol drops with dinner.

Him: and it's worked??

Me: with some success though yeah, too many variables. sorry 'bout that.

At this point he starts talking to the resident, instead of me, explaining what our variables suggest. "..The Ovol essentially breaks up bubbles and if that's the answer than she's ingesting too much air while she eats. If it's the fat reduction in combination with Noonan Syndrome, it makes me think "such-in-such" (sorry. missed that name. could you repeat and spell it out for me?) but [flipping through her file] her white blood cell count doesn't support that. If it's the milk, [and he listens to her heart at this point as if he's seen something in her file he should check] then it could be some other protein intolerance..." (a ha! cue light from on high shining upon him...)

And thus endeth interesting conversation.

Now we work our way back through the variables to see which/if we've actually hit upon something.

First step is to go milk free for two weeks. No milk, cheese, yogurt, etc. According to Mr GI, for the sake of this, we could keep baked goods containing milk / milk products in her diet but eliminate the obvious sources.

If there's no appreciable change in Lauren's gassiness then for three days we're to return to a full fat regular diet, measure everything she eats and collect all her stool for those 72 hours. For reference, these collected 'items' go into a paint can, get sealed up and trucked back to Mac. Glad my part of the job is the collection and NOT the analysis! I guess from that they can determine how much fat is being absorbed vs passing through and suggest a course of action for treatment.

Our next appointment isn't until May. This stuns me a little. If we're doing these 'experiments', wouldn't he want to see us a little sooner to see how we're progressing? What if we're not progressing? I guess to everyone else around us, what's another four months of nightly screaming? It's not their house or sleep being disturbed.

Thankfully Liz, our wonderful dietitian, came by today with dairy free diet information. Everything I could possibly need to know - the scientific names for the hidden dairy products, what foods we need to eliminate all together etc. A far cry from the push-em-through-as-fast-as-we-can mentality of the GI appointment. After our 10:30 am conversation this morning, Liz actually made time to come here when it fit with our schedule to make sure we had what we needed. She also sat and simply listened while I ranted about the puzzlement that is our GI specialist.

I mean, really. Wouldn't you, if you're a specialist AND at a teaching hospital, be at least a tiny bit curious about this oddity that is my daughter? At least ask me more questions? try more things? And aren't there tests out there to narrow down milk protein intolerance? What if it has nothing to do with what she's eating and everything to do with something malfunctioning? What if delaying makes it worse? Why am I the one coming up with all this? Isn't he the expert? Paging Dr. House! I think I'd be more happy dealing with Dr. House, evil attitude included...

But I digress. We could do a milk elimination diet that removes every trace of milk and milk product from her diet or we could simply omit the obvious large quantity sources. In practicality, we're going for something in the middle. Milk, cheese and yogurt are gone and we'll check labels on everything. If it's something like pancakes (which she currently loves) that has milk in the batter, I'm not going to worry about it. In all cases where we have an alternative we give it to her. Luckily she's still at an age where our logic works on her and putting a hit of Nesquick (no milk in it by the way) into her rice milk mades it go down nice and easy. A lot of it down nice and easy! We'll be switching to soy milk as soon as I get some as it has a higher protein content and therefore a better milk replacement but for tonight, rice milk will do.

I figure two weeks is a reasonable enough time frame to go as milk free as possible if it means our nights get better. When we resolve her pain issues (note the "When" and not "If" as I am determined to figure this out even if we have to do it alone) we'll be able to move on to dealing with any attachment related issues.

By the way, to anyone reading this who thinks her crying IS attachment issues, I invite you to come spend the night. We co-sleep with Lauren. When she fusses for attachment reasons, she settles immediately with a sound or a touch from us. When she's screaming, she's inconsolable. There are more and more times that even touching her increases the ferocity of her screaming. You take her for the night while the rest of us go to a hotel.

Meanwhile, no one remembered to give/get a renewal on her Nexium prescription. If only they had a drive through for that. I could drop of her bucket-o-poo and pick up a new prescription...

Oh! I forgot to tell you...

Lauren can crawl!!

22 months old and she can finally move about on all fours. That's our little monster. She's been walking for months but can finally get around down low without skooching. Mind you, if she has her eye on a prize that's only a skooch away, it's the preferred mode of transportation. Crawling just takes so much work what with that mondo head of hers.

She's also trying to jump which is hilarious to watch. She crouches down then springs up, throwing her arms up in the air and lifting one foot. The corresponding grin is enormous and full of pride at what she can do.

AAAND she now calls us by name. Out loud!

She's been signing Mama and Papa since the summer but now uses her voice and uses it loud and (usually) with such joy. We've also started to get a few two word phrases which, for any of you with kids in Speech Therapy know, is a big step. Usually it's a possession prefaced by the word "my" but I'll take it.

Sleepwise, she finally has an animal she loves to snuggle and has started to accept having a blanket on top while she sleeps. This is HUGE - the blanket thing I mean. When the wind comes out of the north (which it does a lot in the winter. We are in Canada after all. They don't call it the Great White North for nothin'), it hits her room hard and it is FREEZING in there. I think polar bears would be quite at home in her room. They are significantly bigger than her room but would be quite happy with the temperature.

Tomorrow starts our month of appointments. We have a follow up with the GI specialist at Mac. Lauren's reflux seems to be under control so fingers crossed he'll now be willing to listen on the gas issue. In the absence of help, we've been experimenting on our own. For the last 5 or 6 days we've really limited Lauren's fat and milk intake. We've also been giving her oval at dinner. Something has worked as she hasn't been awake with gas pains. Tonight is the first night we're going without the oval. I figure he may ask so I'd like to have a least one night of diet change and no meds.

My suspicion is that there's an obscure protein that she's reacting to when it's in quantity. If I can get Mr GI to take me seriously we might actually be able to tailor her diet to eliminate the problem. Fingers crossed. I may have to pull the "but what if she didn't have Noonan Syndrome? What would you do then?" I hope not to but it's in my back pocket just in case.

Maybe I'll wear a power suit too.. or at least nice shoes... Somehow professionals take me more seriously when I don't look like a stay at home mom. Or perhaps it's just me seeming more confident and therefore someone to be reckoned with. Regardless (since the SAHM fight is a blog for another day) wish us luck!

An auspicious start

2009 was a year fraught with technical difficulties. Literally. Our technology was a p.i.t.a. all year long. We had to replace two computers, NICs, wireless router, cable modem (twice), even the UPS they were all plugged into. And just because all that wasn't enough, the PVR died.

On New Year's Eve. Insert sound of object whistling as it falls from the sky and crashes with that wonderful "kablooogh"

Hubby, being the guy responsible for technical stuff, was definitely NOT in a celebratory mood. Did I mention that our NYE 'celebration' started with not ordering chinese takeout because it would take an hour to be ready and it was already 7pm? So we pulled out a pizza and cracked the beer. When the PVR gave it up hubby's appetite was gone and we simply sat, staring at the TV's blue screen of death waiting, hoping some delayed Christmas miracle would keep the PVR working long enough to watch the Air Farce New Year's special. Seems Christmas miracles are limited this year. Must be the recession.

Not being in the mood for a movie, we called it quits pretty early.

Lauren topped the night with an hour of inconsolable screaming starting around 9:30. Woo Hoo! Happy New Year to us.

Thankfully 2010 has started out much better than 2009 left.

The people at Shaw have actually taken our years of customer loyalty seriously (we started when they started as StarChoice...) and, having signed us up for a maintenance package, are actually sending us a new PVR free. Plus, they gave us the maintenance package at half the usual rate. It may be hard to find but I guess customer service isn't dead after all.

AND, the kids actually played nicely. All day. No major meltdowns. No memorable squabbles. The weather was beautiful with big flakes falling most of the day and Roman full of the funniest quips. It even continues today with Roman wanting to play with Lauren and read books to her. She was sitting on the edge of her bed with a book in her hands. Roman went in and asked if she'd like him to read it to her since he knows all the words. They then sat contentedly side by side looking at her books with Roman describing what was on each page of his.

So 2010 looks to be starting off respectably. Perhaps the technology gods will even smile upon us this year... at least once or twice...