Catching up with the school boy

With finally a night to do a bit of catching up, I wanted to share Roman's school progress.

He is amazing. I am very proud of my boy. People gave me grief when he was younger about how attached to me he was - my little velchro boy. Now, he's off into the world and loving it with never a look back.

His first day was an afternoon with only a few other kids in his class. His first words when I picked him up? Not "Hi Mama" but "They have a library!" No tears, no clutching, no fear.



The following Friday was his first full day and his first day getting picked up by the school bus.



At around 8:15 on school days, we head out to the end of the lane to wait for the bus. Roman loves to sit there and watch the cars, transport trucks, dump trucks, tractors, you-name-its drive by while we wait. Stephanie, the bus driver, turns the bus lights on quite far away which has been a big help. There is at least one other bus that goes by around the same time so the lights tell us it's our bus before we get up from the bench. The road is so busy that we really need to stay back until everyone is stopped. I'm hoping it's a habit that will stick with Roman for all the years to come.

None of this traffic and bus stuff phases Roman at all. If it has wheels, he's happy.

We cross the road, I give him a kiss, see him onto the first step and scoot back across the road before the bus lights and sign are done.

Picking up Roman after school results in huge hugs and "I missed you Mama! Can you take my coat/pack/whatever..." all in one breath.

He's already come home with a split lip (his assigned buddy clipped him with her foot while swinging on the monkey bars), scraped elbows and a cold. But this morning, after a week of no classes, he was very excited about the return to school. I asked him once if he's learning any French words. His response, "Not yet. I just listen." He'll get there. Kevin and I are trying to use French for counting, colours, any words we know, just to keep it in the day to day vocabulary.

Yesterday Roman was playing with some letter flash cards and kept asking me what the French words for each thing was. Beats me! I promised to get him so French flash cards instead. He's happy with that.

Today was another good day. He was happy, not too exhausted and ready to go to the public library on the way home then play outside before TV and dinner. It was also picture day and, given how he looked when I picked him up, I can only hope they did the JK photos BEFORE the first nutrition break!

We've been indexed!

No no.. really. This is a good thing!

TheSweetOne.ca has been indexed by Google and we come up pretty high in the listing if you search for Noonan Syndrome Ontario or Noonan Syndrome Canada.

Hooray! Now I need to work on getting higher in the overall Noonan Syndrome searches and/or Noonan Syndrome support...

Thank you to everyone who links to the site. The feedback has been encouraging and plans are in the works for additional pages... they're simply waiting for canning season to be done!

mmmm salsa verde... apple sauce... tomatoes...

Next project: build a bigger pantry

Our website is launched!

For the past couple months, my attention has been elsewhere - besides my garden, Roman and the various combinations thereof. It's been in the midst of developing a website about Noonan Syndrome.

Our daughter Lauren was born with this genetic condition and the online resources are scarce, often overwhelming and mind numbingly technical.

It's at www.thesweetone.ca

It will evolve over time with a new design already on the way.

3.... 2.... 1.... Launch!

A while ago I wrote about our purpose in this world as designated by Lauren's presence in our lives. I decided it was time to put my web development experience to work building a website celebrating Lauren and giving Noonan Syndrome references and resources I would have benefited from when Lauren was diagnosed.

A preliminary version of the site is now online at www.thesweetone.ca

The journey has been a bit arduous with commitments made but not fulfilled, new commitments made but with extended timelines and so we come to this version. The content will evolve. The look will change but the intent is solid.

I hope you'll have a look. Take a tour and let me know what you think, what you'd like to add or what you have to add. Check out the Ontario support community. It's barely started but with each new family, it will grow.

Of course, having reached this point on this particular project means all the things I've been pushing aside are all clamoring for attention... my sister's website, my children's scrapbooks, canning, cleaning, reading... sleeping...

The farts go marching one by one hurrah... hurrah...

Last Friday, while Roman enjoyed his first full day at school, Lauren and I spent the better part of the day at Mac to see the gastroenterologist.

We arrived just in time for the appointment to a clinic that was quite empty. We were escorted right in and gave a very brief overview to an assistant. "It shouldn't be too long" we are told. Ah yes. The kiss of death. Any time they say "shouldn't be too long" it's code for "settle in folks cause if we could charge you rent for your stay we would". Eventually a resident arrived for the usual interrogation while Lauren wolfed down a thermos full of angel hair pasta.

Eventually, Dr. I arrived. Apparently our interrogation must have been sufficient because no questions were asked.

In a nutshell, he suspects that her gas pains prior to farting are due to muscle spasms and an immature system. Instead of her muscles automatically relaxing to let the gas escape, they tighten up and everything gets VERY uncomfortable. He suggested helping release the gas by inserting a thermometre cover. It will help 'reset' the muscle messages as well as letting the gas out. This we have not tried for two reasons - first, half the time we aren't certain it's gas causing her pain until the fart actually escapes. Second, it's the middle of the night. Stripping her down to give her a poke may release the gas but the entire process will ensure she's wide awake for at least an hour.

The doctor has also suggested we try lactose free milk. Even though she has fart-free nights and still drinks a lot of milk in a day, he figures it doesn't really cost anything to try it. The lactose free milk only comes in 2% or less so I have a call in to the dietitian to learn how best to compensate for the reduced fat intake.

We also discussed Lauren's increasing reflux complications. The ranitidine (Zantac) works if we give it to her reactively but doesn't seem to help proactively. Dr. I wants to be proactive and has stepped us up to Prevacid or, in our case, Nexium, to be given once a day in the morning. It takes 12 hours to activate. He thinks it will help so we'll give it a go. At $25/month (even with our drug plan) I sure hope it helps soon. We've had two nights out of four that needed a dose of ranitidine as well so are wondering if/when things will get better for her.

At least we're being taken somewhat seriously. Reflux is very common with Noonan Syndrome and can be quite severe in some cases. Farting, however, is not generally associated with anything abnormal. I think this led to the initial portion of the meeting with Dr. I being very dismissive. I must have been asking the right kinds of questions though as eventually he stopped mid sentence to ask what my background was. Apparently an undergrad psychology degree actually good for something even if it's just to show I'm not a quack mother who's making things up. His tone changed at this point, he started asking different questions and even ordered some blood work. Since some potential issues, like celiac, can be eliminated through blood tests, he's decided it's worth pursuing. I concur even if it means subjecting Lauren to the butchers in the blood lab.

And butchers they are.

As expected, giving blood was traumatic. They get their hands on Lauren's tiny little arm and start digging around for veins. I called a stop to it at one point and had one of them tell me, in a very put out voice, that it was just going to hurt again after the pause. I replied, calmly, but very assertively, "Yes I know but I know my daughter. We're taking a break." When we were ready to continue, Nurse #3 was called to give it a try. Thankfully, she had a brain and figured out that the suction created by the standard equipment collapses Lauren's tiny vessels. They were never going to get anything. As soon as she used a syringe to control the suction instead, everything when very quickly. Something very important to file away for future visits.

We have a followup GI appointment scheduled for January and in the meantime we carry on. I continue to be frustrated that we're treating symptoms and not underlying problems (ie: what's making Lauren so gassy in the first place and what's causing her reflux? Is it muscle related or over production of acid?) but expect that until we get the blood work results and use the prevacid long enough, we won't be able to determine any underlying problems.

After all the trauma of the blood lab and the long wait for the GI guy, Lauren was sound asleep before we even left the parking garage. We arrived home around 2 and had just enough time to relax before heading out again to pick up Roman from school.

For the record, he had a great day so at least one of us did.

The loss of innocence

This week has been full of emotional turmoil, wailing, gnashing and general misery... not to mention how the kids have been...

Garden wise, the tomatoes are gone. The whole patch. Big Boys, plums, brandywine. All of it. All except my tomatilloes but they are resilient little buggers thank goodness. Late blight got them all. The crop was huge too. We put them all in so I could can to my heart's content and have 'fresh' tomatoes all winter long. Alas, it was not to be. In looking back, I'm pretty sure I've had this problem every year but I'm only now cluing in. Actually, last year we didn't but we didn't have the right weather to have anything ripen enough before the heavy frosts set in.

Anyways, the patch was pulled up coinciding with hubby's trip to the municipal dump.

The rest of the turmoil surrounds family members. Roman started JK this week. Wednesday was a half day, Friday his first full day including bus pick up in the morning. I'm both tremendously proud and horribly terrified. My little boy is growing up and I, his mother, sent him off into the world on a bus with some woman whose name I don't even know. She, the bus driver, seemed warm and genuine in the few moments we interacted and her demeanour reassured me and gave me confidence that Roman would indeed be well taken care of. He also knows the children from another family on the bus including a girl in his class so they sat together. He sat in the seat and waved to me out the window as they drove away. I stood on the side of the road, tears running down my face as I waited for the traffic to clear. It's the first time I've been grateful for how busy our road actually is. Waiting for the traffic jam to clear gave time for an attempted collection of thoughts and emotions before returning to the house.

Articles targeted to parents in my situation suggest planning something special for yourself the first day your child goes to school. I expect it's an attempt to distract you and perhaps to give the whole day a more positive spin. Alas, the special planning for us was taken care of by the GI specialist at McMaster having an opening to see Lauren but more on that in the other blog...

School seems to be a huge hit with Roman. There's been no huge episodes, no crying, no wanting to go home that we've heard about. He talks about the toys he plays with and a bit about the activities. When we picked him up from his first afternoon, the first thing he said to me was not, "Hi Mama" or "we played with trucks" or anything I would expect. No. His first words to me were "there's a library here!" I'll have to remember to tell Trudy our local librarian about that...

Meanwhile, because worrying about my kindergartener and toddler aren't enough, one of our 16 year old kitties is nearing the end of her nine lives. I struggle internally with the decision surrounding her care. She doesn't appear to be in pain but she's never been one to complain. I know it's terminal but I can't bear the thought of hauling her off to town for a traumatic car ride to some place she's never been and never to return from. At least here, it's what she knows, her people are here and we spend our evenings together with Billie sitting/snoozing on my lap. And so we wait. I will be heartbroken when she's gone but also know it's what happens to pets and that it is what is necessary. Every night when I give her a kiss I tell her to do what she has to do and not to stay on our behalf. To those of you without pets, I sound like a quack. To the rest of you, I know you know.

Tomorrow is another day. At least the worries about buses, adjustment to school and Lauren's GI appointment have passed. Only the anticipate of heartbreak remains.

The countdown begins

Roman starts school this week - Wednesday afternoon then all day Friday. Starting next week, he'll go every Monday and Wednesday and random Fridays. My stomach does flips thinking about it even now, four days away. I'm trying very hard not to project how I feel about it to him or to show in the faintest how I'm feeling about it.

I want him to be excited. I want him to be thrilled about going, thrilled about being there and thrilled to be learning.

I cringe inwardly to think of him climbing on the school bus and being off into the world without me. He's not yet four. He's smart, he's adorable but he's also reserved.

Starting school is the beginning of so many things for him and for me but it awakens so many fears as his mother. Will he be happy? Will he succeed? Will he be safe? Who will look out for him? Who will befriend him? Will he be strong or will he be a pushover? Will he remember to tell me everything? ...

I want him to have everything, be everything, do everything and be proud of himself.

And I have to remember that he's not even four years old. Off to independence and he's not even four.

Perhaps it's moments like these that will remind me... Who knew you could have so much fun with bloomers.

Knock knock... Oh. Hi Murphy. Come on in...

I spoke too soon. Or I Murphy'd myself. Saying we were on an even keel seems to have drawn the karma gods straight to me. Lauren's had a fever off and on for a few days. It seemed to clear but then yesterday was a whole new experience. After her nap she was miserable. She stayed miserable until the Tylenol I finally gave her kicked in. It was like someone flipped the light switch. Cry, scream, howl, flail, repeat, cry, scream, howl, flail, laugh, giggle, play tickle worm with Mama. "Paging Dr. Jekyl... Paging Dr. Jekyl. Consult in Living Room A."

Bedtime was equally traumatic. She went to sleep quickly enough after her bath but then 40 minutes later the cry-scream-howl fest resumed regardless of the Advil we'd given her. An hour later after the dose of Tylenol kicked in (yes. Tylenol on top of Advil), she finally dropped into a restless sleep. "Calling all stations, scheduling update: cry-scream-howl-and-flail fest to resume at 11:30pm. Please note this fest to be one hour in duration followed by one hour of awake-play-laugh-and-thereby-torture-exhausted-mama fest."

After the second hour when we were both set to drop from exhaustion, Kevin came to see what he could do to settle her in again. Lauren still seems to do better with him. Maybe he's a bit more comfortable to snuggle? She started to pick up the fussing and wailing again until I decided that perhaps milk would help. She'd had water to drink and doesn't usually have anything more substantial during the night but what the hell. Whether it was food in her belly or the feel of nursing to sleep, finally something worked.

The frustrating thing is how useless I feel. I'm her mother and no matter what I tried, I couldn't bring comfort. Massaging her legs and back helped a little but not for long. Same with stroking her head. Singing, rocking, storytelling... nothing. At one point, the decibel level of her screams went up as soon as I touched her as if her actual skin hurt. I couldn't pick her up, I couldn't hold her close. Nothing. There she was right in front of me in obvious excruciating pain and there was absolutely nothing, NOTHING, I could do.

I haven't felt that hopeless in a while.

For the record, I don't miss it.