Puzzle solving

For many years my parents would wrap a jigsaw puzzle for us to open on Christmas Eve. It would give us something to do as a family while waiting for the big day. I enjoyed doing them. As we got older, the puzzles got trickier - boxes with no picture, large areas of sky, the same picture on the front and the back, edge style pieces in the middle, etc. those "ooo. this'll be a doozy!" type puzzles.

Who knew it would be good primer for me to figure out my children.

I *think* we've worked out the issues that caused all our concern last-this week. Each piece that we pull out of the puzzle makes the remaining picture clearer.

First corner piece is pain. Lauren was having more gas pains. This, inadvertently was our fault. She's been on a mild daily dose of laxative and, since the consistency of her bowel movements was softer than needed, we'd been working on, yet again, reducing the dose. For the most part this was fine but after a night of severe gas pains, we suspect it may have been causing more issues than we could see. We've upped her dose back to what it was two weeks ago and it seems to have relieved that part of the issue.

Gas pains would've affected her sleep plus I'm still convinced there is some level of obstructive sleep apnea affecting her. One particularly fussy evening, I went in to find her snorking and fussing, lying on her back. I comforted her and she woke enough to roll onto her side and snuggle one of her animals. That was last peep we heard all night. She even slept longer than usual which I attribute in part to her sleeping on her stomach.

As well, frequently throughout the last few days, Lauren has complained of aching joints. "My knee hurts Mama. Kiss it." or foot or ankle or... insert lower extremity here. During the day, kisses seem to keep things under control but a night time dose of tylenol gets us over the sleep hump and helps ensure a better night overall.

Lauren at the restaurant on Mother's Day. The kind of joyful attitude we're used to...

So that's one BIG one down, two more to go - why does she keep covering her eyes and why is she howling at us like the world is ending?

Turns out the eye covering is a carry over from last Wednesday's time at pre-school. They were having a sensory learning day and did a number of games and activities where they covered their eyes. At home it seemed to coincide with light changes or activity changes that suggested her eyes were bothering her or causing pain. Nope. Just trying it out!

Lastly, she's howling because she's three. She wants to be in control and she's trying out crying and screaming as a means to get what she wants and establish control.

I get it. There isn't much in her world that she is in charge of. She wants to be able to have Mama at her beck and call and do everything SHE wants me to do. And I'm not willing to indulge. Yesterday, when she was in a mildly howly state, I asked, "Who's the boss?"

"I am" she says.

"No. Mama is the boss." I reply. "Who's the boss?"

"Mama." she says in a forlorn voice.

When she started howling again a bit later, I asked "You're howling cause you want to be in charge?"

"Yes." came the wimpery reply.

We've since talked about how Mama will give her the things she needs and sometimes, Mama will give her the things she wants but when Mama says No, Mama is not changing her mind just because Lauren cries and howls.

There's been less of it today. Less power struggles over all which is nice.

Other than the eye covering, I believe they are all intertwined. Being able to reduce her level of pain makes everything else a little more tolerable. Looking at it another way, when I feel miserable, I want it to stop. I want to be able to do the things I want to do and I certainly don't want someone else constantly telling me what to do. When I'm tired, cranky and hurting, just leave me alone.

And so we hope for the best. The puzzle pieces are all in place though the edges are still a bit rough.

I'm worried about my little girl...

When I picked Lauren up from school on Wednesday, she was happy. She'd had a great day, was perky and chipper and all was well. Even when we got home, right up until we got to the top of the stairs. Then she grabbed me tight around the neck, howled and demanded to be put in bed. She napped for 2 hours and we went through it all again at 4:30 and she slept until 6.

Thursday she put herself down for a nap in my bed around 2pm and slept til 4.

Both nights she still went to bed at a reasonable hour.

Today she lay in my bed by herself and played in the morning. Around dinner time she howled and was not herself at all. Eventually we convinced her to eat something by putting it in front of her where she was sitting in the living room.

In bed tonight she's been fussing and chirping in her sleep and sounding generally miserable.

There's no sign of fever or illness. Most of the day she's her normal happy, chipper self. She was fine at Home Depot and at KidsAbility. Yesterday she was fine in town to get Roman's hair cut but for large portions of the day her behaviours have been anything but normal for her.

I'm at a loss for what is causing it.


I don't like not being able to fix it.

OT update

In my quest to be 'on top' of everything, I've already started into the transition to school portion of parenting Lauren. No she doesn't start this September. Yes I am self diagnosed as mildly O/C. I obsess about my kids and making sure they have everything they need to succeed. In this case, it's making sure Lauren's physical limitations don't interfere with her cognitive development.

I've already spoken to the bus people and if she can't manage the getting on and off the school bus safely, (especially with a big-assed backpack full of books and her lunch box... but that's another post) they'll arrange for a van or bus-taxi to pick her up. Maybe Roman too but we'll see if that actually transpires.

Today we met with our OT, Paula, who is amazing. She's always really supportive and on the ball with what will really help Lauren and make sure she doesn't slip through the cracks. Today we met to review where Lauren is at and determine whether we can get her into a programme for assistive learning technologies. This would set her up to have a computer for taking notes and doing assignments instead of relying in handwriting. Not that we'll skip handwriting - I believe it's important and going to be missed when it falls out of education - but rather, by having a computer to use, she'll be able to focus on learning and the task to be completed rather than how tired and sore she is from trying to physically complete said task. It's not something we'd put in place for her kindergarten years but I expect by grade 2 she could be in need and ready for it.

She's super smart and I am so thankful. In all the tasks Paula set out for her - cutting paper shapes, drawing lines, building kinex, playing a fishing game - she blew through. She was completely floored when Lauren could write her name on a Doodlepad. They're the only letters she can write but she did it with the skill of a 4 1/2 year old. This Mama bear is very proud!

It's one thing to think your own kid is brilliant. It's something else to have a trained professional be thrilled about their progress.

We never did get to the computer stage but Paula's going to find out what the criteria are and see if it's a 'better sooner than later' type of situation. While we both recognize that Lauren might be overqualified, on account of her limitations being physical not cognitive, neither of us wants to miss the opportunity and regret it later when she really does need help.

Paula's one big concern for Lauren is her thumb joints - they collapse when she puts pressure on her thumb, like when you hold a pencil. We take it for granted. What can be hard about holding a marker or crayon? I can't even describe it properly. Her thumb joints fold the wrong way when she's holding a writing tool. It doesn't seem to bother her, she can still write and colour fine, but long term, it's going to cause problems.

So now we have a blob of theraputty. It's like industrial silly-putty. We hide things in it like buttons, beads, toy animals and legos, and have her pull it apart. It's tough and this is the lite grade. If Lauren is ever strong enough to use the heavy-duty stuff, she'll be able to climb mountains with only her thumbs.

I expect Roman will have a blast with it too.

The one interesting / exciting / moderately overwhelming thing is Paula asking if she can nominate Lauren (which at her age is really me) to be a KidsAbility ambassador. It means participating in events, public speaking and generally sharing how KidsAbility has enriched Lauren's life. There's an interview process and time commitment but for now I've said, "Of course!" Lauren has a great personality and a syndrome people have never heard of. Perhaps our participation is a way to help bring KidsAbility into more public forums, get corporate partnerships and provide more services to kids that need it far more than Lauren has.

We'll see!

Busy Busy Bees

Yesterday was finally warm, dry and sunny enough to get some work done - onions in the garden, the deck joists trimmed, gazebo demolished and a birthday party had.

Note concrete pad - imagine a gazebo on top.
Now image said gazebo in pieces in my parent's trailer for relocation.

Mmmm cupcakes.

Roman watches cousin Chris. The colours really were this crisp. Must have
been the perfect combo of sun, storm cloud, yellow slide and pear blossoms.

Today carried on the mixed up weather but with time enough to get the tomatoes and tomatilloes into the garden amid the thunder. Everything cleared up perfectly in time to join friends in town for a bbq. What started as a chance for us to get our two families together and let the kids bounce on their trampoline became a fabulous gathering with 5 families and 11 kids.

From the moment Lauren saw the trampoline, she was in it. As our hostess Kristina said, "I don't know why you would want a trampoline. It's not like she wants to bounce or anything..." Lauren would climb out after 3 or 4 minutes to check on Roman or play elsewhere then, as soon as there was room for her, she was right back in. When everyone else was eating, "I all done. I go tampoleene..." and off she went. Again.

We saw huge strides in Roman today too. Our host Robin is a tree guy and set up a short modified zip line for the kids. After watching two or three kids go, Roman asked for a turn. He waited patiently for almost 20 minutes for his turn and made the wait worthwhile.

Lauren wanted to give it a go too, "I go on the line Mama!" and while getting the gear on was fine, the test lift made her decide it might not be the thing for her today. A bit of a surprise from our daredevil. Instead, Lauren found another retreat, just for her:

The trees here are huge and with all the rain, everything is lush
and gorgeous - especially my little girl, in her bright pink crocs.

Purpose

I wonder sometimes about my purpose in this life. Not in a morbid overly concerned way but in a practical, "what am I supposed to do with myself and my time" kind of way.

When Lauren arrived, complete with mixed up DNA called Noonan Syndrome, we were thrown into a world of research, medical testing and ongoing appointments. Given my insatiable need to "know", we were also thrown into a time of digging, researching, reading and investigating.

Finding reliable information was difficult. There's a US support group but the website was significantly out of date. Not a problem for most but coming from an advertising background and specifically as head of the internet department for an exceptionally talented boutique firm, I couldn't stomach the look, language and navigation of it long enough to gather the information I needed. As well, with Lauren such a tiny and troll-like being, I couldn't imagine how my little bit could end up looking the same as some of the photos.

TO BE CLEAR, I'm not saying any negative about the photos online. They are someone special and loved very much but to a mom of a new baby with a new diagnosis, the worst-case scenario photos are scary.

At that point, my purpose was to create an online resource for new parents of children diagnosed with Noonan Syndrome. I had all these years of web experience, surely I could do something productive with it. It became my mission to make sure access to information was compiled in a site that was easy to use, easy to navigate, easy to read and full of fun, full of life photos.

That's done at TheSweetOne.ca. Been done for a while now (probably needs updating again) and we've met some wonderful people through the site. It means people are finding it and some are actually brave enough to pick up the phone and call.

But now what? I still have conversations with people, including medical professionals, that go something like this: "Noonan Syndrome? What's that? I've never heard of it." and inside is my highly sarcastic response, "Really? Never heard of it huh. Go figure."

Which brings me to my current quandary. Now what? Leading me to a few options I consider regularly...

1. Growth Hormone Therapy is "off label" in Canada meaning children in Canada do not qualify for government funding regardless of their NS diagnosis. According to our endocrinologist, there isn't enough statistical data proving its efficacy in this situation. The government's stance is that NS kids' bodies (usually) produce enough growth hormone so regardless of the fact that their bodies fail to use the growth hormone effectively, they are unwilling to recognize HGH as a valid treatment for short stature. (In cases where the child doesn't produce enough GH, they are classified as growth hormone deficient and ARE eligible for coverage). Given the high cost of GHT (averaging out to $100,000 - 120,000 over the course of treatment) it's well outside the real of reasonable for many families to pay out of pocket. So do I take up the banner and start fighting to have NS recognized as a valid and valuable use of GHT? Get it on label and take finances out of the GHT dilemma?

2. Awareness of Noonan Syndrome in the general population is dismal. Mention Down Syndrome, or Autism or FAS or throw a rock and you'll hit someone who knows someone. Mention Noonan Sydrome and you'll get "What?" and "How do you spell that?" and "what does that mean?" Worse, you'll get a Google Search that tells people the affected child will be "short statured, have dysmorphic features and be mentally retarded" all of which are true in some cases, but somewhat irrelevant. So is my purpose to now get Noonan Syndrome into the public forum? If so, how? I have ideas (like sponsorship/human interest articles in major newspapers assuming I can find corporate sponsors willing to take the plunge...) but am reluctant to put my daughter out there. But without putting her "out there", how can I put a face to the syndrome? And is there any true value in getting it into the public eye or should I be

3. Raising awareness in the medical field to decrease the amount of educating I have to do at nearly every appointment, to increase the chance of better treatments, increase the chance of early diagnosis in children without the obvious markers and build a larger support community for families dealing the NS and its complications both physical and psycho-social.

And does one aid the other? Getting Noonan Syndrome into public conversation would, theoretically, hit the medical field as well. One article in a well placed news publication could get coverage cross country and, with internet support, internationally. Medical professionals are people too so surely they read once in a while.

So while continuing to obsess about building a chicken coop for my eventual flock and tracking down an affordable SpringFree trampoline for Lauren, I also obsess about what's next for me in the field of Noonan Syndrome.

Since I don't see myself returning to university for a molecular biology degree (though it has crossed my mind...)  I'll be obsessing a while longer.

My purpose it there somewhere. I just have to find it.

Drip Drop. Someone make it stop...

I'm starting to feel waterlogged. I like water. Truly I do. I especially like it in large lake format upon which my kayak could be situated with me in it.

I am not, however, particularly fond of near continuous rain. Roman and Lauren have also reached their tolerance limit and it makes for a volatile mix.

What started out as shear desperation resulted in an enjoyable trip to the mall for lunch and a bit of shopping. My two are reasonably well behaved in public places including sitting in a food court, wolfing down burgers and picking VeggieTales movies in the video store. For this, I am eternally thankful.

We were equally successful in The Children's Place scoring some really cute t-shirts for both kids AND pjs with shorts for Roman. He's been wearing hand-me-overs for years which work well enough but it`s nice to actually buy something for him that fits right.

Lauren was adorable (as usual) pulling item after item off the racks, turning to me and saying "Look Mama! This is cu-ute. Look at this dress Mama (it's a shirt but on her hey? Get the right size and it would be an adorable dress!)" or "Do you like this one Mama?" I was quite impressed -after each exclamation and exhibition, she carefully put each hanger back on its post and moved on.

It's already been determined that the shorts she's been wearing for the last two summers will fit yet again so t-shirts are all we needed. And until we can convince Lauren that dresses are meant to have bare legs beneath them, there's not much point in adding to that massive collection.

(On a side note, the night before my birthday, as I tucked Lauren in, she said, "You know Mama? I have a lot of dresses in my closet." Me: "Yes sweetie you sure do". "We go shopping Mama. Buy you some dresses for your birthday!" I'm taking it as a nice sharing gesture so I can be like her and not some critique on my outdated Mommy-life wardrobe...)

Arriving home found the backyard dry enough to be in and the garden calling for plants. It's too cool for anything substantial but the seed potatoes were attempting climb out of the boxes in cold storage. While the kids' participation could hardly be called "helping" they did keep me company and dig their own collection of holes while I put russet and yukon golds into the ground.

Fingers crossed we'll get a better crop than last year. Wouldn't take much so here's hoping. Everything else garden wise will just need to wait - even the peas - because the soil is just too saturated. There is hope for a dry few days coming up meaning a full weekend of seeding and attempts to keep Lauren from falling into the potato trough.

At least she loves getting dirty.

When we came in today she had more earth in her crocs than I had on my rubber boots. Makes me smile to see her happy and covered in soil.

NOT bouncing off the walls

We were supposed to be bouncing. After the amazing day with our NS families and Lauren's complete and overwhelming joy at bouncing bouncing bouncing, we were stunned to find the most amazing opportunity.

And today had it snatched away.

Tuesday morning we followed a link for a used, well damaged but salvageable spring-free trampoline. New they cost more than I'd like to consider (though I've been considering it. Seriously considering it.) and used are hard to find. Not surprising for how they're made. Who would want to part with one?

This one had been flipped by the wind and needed replacement parts. Hubby and I inspected it carefully (in the freezing rain with two kids in tow), made a full deficiency list and, before committing to buy it for an insanely reasonable price ($75), made sure we could get all the parts from the manufacturer.

Not only could we get everything needed, but total cost including shipping would be less the cost of a used (not so damaged) unit. We joyfully committed to the purchase, arranged a day to dismantle and pick it up (today) then placed our order for parts. It was all was coming together perfectly - the delivery of parts was even due for end of day today, after we'd have returned home with our base.

Low and behold, when we arrived the trampoline was gone. Not just gone but GONE like it had never existed. Not a scrap or shred of fiberglass pole, trashed safety net or anything. Only a trail of crushed grass where they'd tramped up and down the hill. (Ha! A pun even... tramped!) The nice new insurance paid replacement was there, all beautiful and bouncy but no trashed one waiting for us and our tool belts. We were suitably upset / disappointed / insert adjective or expletive here but after time and considerable prayer, decided to take the positive approach that perhaps the family had managed to get it apart and had put it somewhere safe that we just couldn't see.

I left a polite voicemail and tried to hope for the best. The struggle I was having was that the guy and his wife were so kind, sweet, personable. The kid of people you like and trust - like us. So if they had sold it out from under us what would that mean for the world at large? Not only could they have sold it but they DIDN'T call. Not only was it not there but no phone call meant we had packed the kids and driven all the way there for nothing. Of course I really needed to shift perspective rather than ponder what it would mean for my world view if the people I instinctively trust can't be trusted.

Meanwhile, poor guy returned home to find no trampoline and no money from us. He's thinking the worst of us, just like we'd thought the worst of him. Then he heard my message.

Turns out the guys the insurance company sent to assemble the replacement trampoline - despite our guy's instructions - had taken the old one away.

This alone wouldn't have been a problem if we could've gotten it back but they TOOK A SAWS-ALL TO IT! Seems they couldn't get it apart so rather than try something else or leave it, they completely destroyed it. Over $700 worth of salvageable trampoline gone.

After a bit of time and pondering why, when we felt like we were finally catching a break, things would go so drastically wrong, hubby and I have both taken the stance that there must have been something more that was wrong with the trampoline that we could neither see nor fix that would've put Lauren or Roman at risk.

While it may be delusional or misguided thinking to some, we're confident that it happened for a reason.

We'll keep hunting, hoping for another break or the generosity of others to provide a safe bouncing, muscle and endurance building haven for Lauren.

My little jumper

I could watch this all day. I love her "Science Centre" hair and just how happy she sounds and looks. Her smile at the end melts my heart every time.

The one and only sunny day

Saturday was gorgeous! Finally - a day to get out, jackets optional, sun fully appreciated.

After morning swim classes, we arrived home to a day warm enough to do a bit of yard work, spend time with a wooly bear caterpillar:

Roman even found a dandelion leaf  "so he has something to eat when he gets hungry Mama."

find said caterpillar a new home away from the sidewalk:

Complete with dandelion leaf

then a barbeque picnic. Mmmm. hot dogs with just a hint of char...

Next was a much anticipated trip visit with friends in the "Big City" - two families with children the same age as Lauren, also with NS. We try to get together every few months. I for one really appreciate the time we get to spend both because we know we all "get it" and because they are amazing people.

The host family had the best trampoline ever:

Absolute joy

and all the kids had a blast. Lauren would bounce til she was tired, get out then go back in a few minutes later. Late in the afternoon she was in for about 20 minutes straight. (The next day was a complete write off but completely worth it.). We also captured this moment:

Future BFF?

And, after a full day, amazing food and lots of play time, we packed our kids into their PJs:

The best PJ party ever.

and all headed for home.A joyful, sun filled, rejuvenating day I would be happy to repeat.