The Upside of Down

It is only Thursday and I am pooped.  It has been a very busy week so far (and will continue to be so), but we have had a few nagging questions addressed. I am happy to report that these answers have brought a lot of relief and comfort.

As I mentioned previously,  Our worker from Infant and Child Development Services came Monday morning.  Their workers come from a variety of backgrounds including ECE, Psychology, OT, Nursing... ours comes from an ECE and Developmental Psychology background, which suited me fine. She came in, introduced herself... and spent over two hours chatting with me and playing with the babies on the floor.  It was great.  Quinn was in fine form as well;  when he heard that she had arrived, he hurried to get dressed.  Unfortunately, he missed the pile of clothes that I had left on his bed for him (shorts and a t shirt as it was going to be a very hot day).  Instead, he came down in brown track pants and a light coloured pullover with a collar on backwards.  He came right up to us on the floor and sweetly announced "Hi, I'm Quinn" while wearing what looked like a straitjacket. That's m'boy.  She didn't bat an eye... I guess she was too busy gazing into his.  I sent my little lunatic upstairs to change and we got on with the assessment which was only occasionally punctuated by an off the wall [to us] but perfectly pertinent [to him] statement or question.

The whole conversation, like my brain, was very tangential and informal. It totally centered around what the kids were doing.  Both babies were awake and alert and ready to show their stuff.

Listen... they're talking about us again...

Wyatt's head is getting a little more steady every day, which is very encouraging.  "A."  was happy that Zoe could push herself up on her forearms and showed me a little trick to help them master it.  Overall she was very pleased with Wyatt's development;  she remarked on a few things, including his vocalizations, his mouth shapes during these vocalizations and his ability to track by sound and sight.  He also reaches well for things.  A. continued by listing off a few things that I can do to help both of them improve and I was very happy to hear they were things that I was already doing.  Little things such as ankle/wrist rattles, using the dangling toys on the Gymini-jillikers (Gymini play mat), the simple toys I was using, talking to them, imitating their sounds, changing their environment, introducing texture, playing music for them, singing and so on.  We talked about their delivery, Wyatt's diagnosis, their stay in the NICU and how we managed that... even Zoe's surgery.  She was amazed that a) I managed to make it to Mother Goose at all and b) how I was "handling" everything.  Sometimes you have to have things pointed out to you and I am no exception.  I guess our story is a little incredible if you think about it.  A. made a point of relaying how well she thought Team Logan worked together and how well we have dealt with our roller coaster lives over the last two years or so.  I told her that all you can do is laugh sometimes, and cited the dishwasher (which died a horrible leaky death the night before).  What are you going to do?  That's life.

Many of our questions were finally answered.  Infant and Child Development Services sets you up with whatever extended services you might need, such as OT, speech therapists, etc.  Usually, speech therapy and the like start after 1 year of age.  The idea being that you assess where the child is with their speech, etc at that time and then intervene appropriately.  We talked about Wyatt's physical health and swimming was discussed.  I was surprised that they don't recommend exersaucers and jolly-jumpers and the like, but she went on to say that many parents leave their children in them for hours at a time where they are standing on their toes and that interferes with proper leg and foot development.  She did add that 10 or 15 mins here and there would be fine and would be helpful, but no more.  A. went on to say that the best place for them would be just as I had them, on the floor, where they could grow and stretch and build their muscles in a more natural way. 

ICDSP also has a ton of resources for us to utilize:  They have toy and book/video libraries, will and estate planning, evaluating eligibility for and setting up government funding, groups and programs tailored for your needs... and the list goes on.  They will also be involved before Wyatt starts school;  the spring before he starts JK, we (A, the OT, any other development specialists, the teacher, the principal and Sean and myself) will all meet and discuss exactly what his needs are and whether or not he will need additional support in the classroom.  I guess at the time we will also discuss whether our school separates twins or not, but that is another issue.  Even though I knew that he would be going to regular classes like a regular kid, for some reason hearing it from this woman made me relax a little.  I don't know why... perhaps, once again, a small amount of validation can go a long way.  She will be visiting us monthly for the first while to assess his continuing development, which I was also pleased to hear.  I found the whole experience to be extremely positive;  Wyatt's doing well, we are doing well and we are doing the right things for him.  I don't think it gets better than that.

That night we took them to our GP for their 4 month shots.  I'm not so sure of their scale to be honest, but according to it, Zoe weighs 12 lbs, 6 oz and Wyatt weighs 12 lbs.  Zoe has officially beaten her brother in the weight department (you can chalk that up to the muscle tone).  Our Family Doctor was pleased overall with their progress and gave them a shot in each thigh.  I had Sean hold them down... I couldn't bear to do that again.  They were reasonable that night, but were feverish yesterday...  light to no clothes and Tylenol seems to have taken care of that for us.

Tuesday we had a trip to the cardiologist and once again, the kids were on.  I really do like going there as everyone is so friendly and very helpful.  We didn't have to sedate Wyatt (which is always a relief) and it was such a pleasure to watch the babies interact with the staff.  There were a few awkward spots especially when Zoe started crying right when we were doing an echo on Wyatt, but one of the staff just walked over and got her to smile as if this happened every day.  Wyatt had his checkup and his echo and the Dr. is so pleased with his progress that we do not have to see him for another 6 months.  Fantastic! 

We had a happy little moment on the way out as well.  Quinn was playing with a new friend in the waiting room and when we were leaving, I was delighted to see that the (younger) boy he was playing with so easily had DS.  I introduced myself to the boy and his mother and talked to Quinn that his new friend had the same condition that Wyatt has.  "But, they don't look the same" was his reply, to which I responded that "G" looked like his family while Wyatt looks like ours.  I don't even think Quinn noticed that his new playmate was non-verbal... they totally "got" each other.  "G"'s mom was very pleased with the interaction and I was too...  as it was just a little heartwarming glimpse into the future.

It is always good to hear good things about your kids, it's even better to be given the reassurance that they are doing well and most importantly that you are doing the right things for them.  Although I think we are pretty good parents and we strive to be the best that we can for our kids, it is good to have that little extra bit of validation.  Armed with that, we can continue on knowing that Wyatt (and all our kids) will be the best that they can be.  We may not be able to predict Wyatt's journey, but his path will take him places... of that I am sure.

Wyatt intently listening to big brother Quinn

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I Has a Dumb

A couple of years ago I had an experience in the grocery store which made me realize the extent of the power that our kids have over us.  Once upon a time, we were all cool.  Once upon a time I was a smart, witty intellectual nerdy-type girlie girl.  I wore makeup.  I wore jewelry.  I wore high heels.  I carried on intelligent conversations with other intelligent adults.  I had new clean clothes.  For god sakes, I showered. 

Now that my family has swelled from three to five, I find myself experiencing new levels of dementia that I did not think possible;  a new brand of brain injury totally created by the kids.

Thursday, Wyatt had a follow up appointment with the ENT to hopefully get a good look at his eardrums and assess any potential problems with fluid buildup.  The appointment was at 12:45.  Difficulties:  Bus, 5 year old.

As I have mentioned before, I'm a transit Mom.  I don't mind it all that much to be honest and with the twin stroller at the moment, it is going a lot smoother.  I'm not sure if it's the monster gear or the half-crazed look in my eye, but people just get the hell out of my way.  It's awesome.  Occasionally I have to revert to my "work" voice and ask some Emo twit to vacate the flip up seats, but other than that, it is usually pretty smooth sailing.  You just make sure you plan your route and give yourself enough time.

I started at 7 am.  Yes you read that right.  Up at 7, feed and change the babies, pump.  Get Quinn up at 7:45, eat cereal with him, get everyone dressed and ready, out the door to the bus.  Back to the house.  Run around, doing various things including make a cheese sandwich, check bus times and pack the diaper bag.  Call doctor's office to confirm appointment and check time.  Feed babies, pump and change.  Grab stuff up, head to meet Quinn's school bus.  Go home, toss in his backpack, swap out his rubber boots for runners and straight to the bus stop.  On the bus, 3 minutes later.  Rock 'n' roll. (The cheese sandwich, BTW, was Quinn's bus snack at our layover between buses).

As we were pulling up to our destination, I checked the time and saw that we were ten minutes early.  "W00t", I said to Quinn, high fiving him.  As we were rolling up to the front door, I was mentally congratulating myself again and thinking about our "treat" after.  Should we go to McDonald's or just have an ice cream at the convenience store?  It was humid, my clothes were starting to stick to me and my bowl of cereal was a very very long time ago.  No worries, just a quick appointment and then we'll go out to lunch.  Just as I pulled up to the front door, I broke out into the cold sweat of realization.

We were at the wrong doctors office.

Even though I knew we had to go to the ENT, even though I had spoken to the office earlier, I had gone to the ophthalmologist instead.  WTF?

How the hell had I managed that?

Now, to be fair, Wyatt has seen 5 doctors in the almost four months that he has been alive, 3 of which he has seen multiple times.  It was bound to happen at some point, really.

Somewhere in the next few seconds, I turned into Angry Dizzy Hulk.  First, I let out a barrage of language that threatened to melt the sidewalk.  Then, once that was set free, I was able to start triangulating my route to the ENT (which was, of course, on the complete opposite end of town).  3 buses.  It would take me three buses to get there.  I swung the stroller around and stomped off to the nearest bus stop, dragging my very confused five year old behind me.

It took us an hour and fifteen minutes to get to our destination. Since I was told the last time that the Dr's last appointment is usually 1pm and it was now well beyond that, I doubted that he was still around.  Who knew if his secretary was even still there?  I kept getting dizzier and hulk-ier.  My knees were actually wobbly and Quinn's bottom lip was quivering as we exited the last bus and went to face our [at least air-conditioned] fate.

By some miracle, the ENT was still there and the secretary was still civil.  I was almost in tears as I explained to her what had happened since we last spoke.  She just shook her head and told us to relax.  I could have hugged her.

Once we were there, things just fell into place.  I held Wyatt tightly despite his screams as the doctor suctioned out what was blocking his tiny little ear canals.  You could actually hear big pieces being sucked out of there (yuck!).  When this was all done, the ENT tried to have a look again... and failed.  Even with clean canals and the smallest pediatric head on the otoscope (not to mention his thrilling headgear), he still could not see Wyatt's ear drums.  I think I swore again.  Our instructions:  bring him back in a couple of months once he has grown.  Groan.

By this time, my knees were knocking.  I had to EAT.  Quinn picked Subway and our not so merry caravan descended on them like a pack of hungry dogs.  Our sandwich specialist attempted to take our order and I'm pretty sure that I wanted to ask about the $5 foot long specials.  Unfortunately, given the look on her face, what came out was this.

Half an hour and a thousand odd calories later, I felt much better.

We arrived home without further incident, thankfully.  Zoe slept the entire time, which was a little miracle unto itself and made more fabulous as I had forgotten to bring a "tookie" with us.  We were truly playing with fire with that one.  We beat Sean home by a few minutes and once another round of feeding and changing was over, I sloped off to the bathtub and wore my jammies to dinner.  I was done.  Finito.

Not every day around here is a complete circus, thank god.  Some days have surprisingly pleasant results. Thursday night, while waiting for Sean to finish putting Quinn to bed, I was trying to entertain the two little ones before their bath.  I had them down to their diapers as a) it was hot and b) they had puked/pooped on their last outfits for the day.  They had also run out of patience for the mobile and for Mommy tickles and I was about to have two hysterical infants on my hands when I spied the two bumbo seats in the closet.  "What the hell..." I thought, and pulled them out.  Wyatt is not as good at holding up his head as his sister so I braced behind them with two big pillows as I set them on the futon. I immediately burst out laughing and had a few minutes of hopping from one foot to the other in impatience as I waited for Sean to finish the story so he could watch them while I ran for the camera.  Although you can see that Wyatt was getting tired near the end, and the lighting is shite as this was thrown together, the results are still waaay cute.

I think she's taking our picture again...

I'm not sure which shot I like better... Wyatt's ultra casual:

S'up?

...or him gazing lovingly towards his sister.

Hey...

We have some ultra cute Zoe too...  I finally captured her goofy grin.  Which is good as it will provide some good PR for the kid as she continues to scream her way through infancy.

Wheee!

Just to be fair, here is another great moment with her. 

These photoshoots wear me out.

I've managed to unearth a few decent online resources this week too.  My traipsing through the blogosphere has finally paid off as I have found a few that I think are actually worth reading.  This is helpful as at least the illusion of shared experience can provide comfort.  One good find this week is a fantastic German lifestyle photographer named Conny Wenk.  Although she has many "typical" clients, she has many with DS as well, including her youngest daughter.  You can find her wonderful photoblog here.  I also stumbled across a downloadable book for expectant Moms:  Diagnosis to Delivery:  A Pregnant Mother's Guide to Down Syndrome.  It might have helped me a bit, hopefully it can help someone else.  I was marveling that the photography was very good until I realized that one of the contributors was none other than Conny Wenk herself.  Very cool.

Which brings me to my latest project...  As you know, I've been blogging for years and this has exploded in the last 5 months or so due to the twins and Wyatt's issues.  I've also been shopping around for DS resources and not finding a lot that I personally find useful.  I also have a husband who, when he reads my entries says very little, other than "I was there... remember?".  He did say something of note last week however: "Why don't you start a Down Syndrome blog and help some people?  You are a damn nurse after all..."  He's right.  So I did.

Down Wit Dat

Basically it will repost all my DS related entries (lets face it, DS parents don't want to hear about my garden) and feature all the useful resources I can come across.  A little redundant, yes, but hopefully it will provide some assistance to someone.  If only a laugh.  (If you are reading this there... Hi!) Besides, there has to be other quasi-coherent, non-baby collecting, non-fanatically religious DS Mommies out there that swear like hooker pirates, right?

Right?

In the end, it's been a give and take kind of week.  Much like most things around here actually.  Without breaking into 80's sitcom theme songs, you take the good with the bad.  Good:  kids are healthy and well looked after.  Bad:  Mommy has a dumb.  Good:  Wyatt is doing well.  Bad:  Mommy's... wait, what?

The memory has to come back at some point.  Until then, just assume I'm a little impaired.  Which is perfect, as it brings me down to their level.  If you can't beat 'em, join 'em.  Just roll with it.  We are down wit dat.

On Mother's Day

My Mother's Day started like any other day, to the sound of at least one baby crying. Now, as it is the weekend, I've let their schedule slide a little bit which gave me a few extra hours sleep going into Saturday. Last night they decided to take that back; this morning was not greeted as happily as the one before.

Over the course of today, I've received: 1 handmade card (from Quinn), 1 decorated cup full of dirt (that I am assured that a seed lives in), 1 handmade necklace (also from Quinn), and three commercial cards (one from each of the twins and one from Sean). We had to forgo the usual brunch as my husband has been suffering from a migraine all day... which was a bit worrysome as he does not get migraines. The day has progressed like any other day otherwise; dishes, laundry, babies. Meh.

Speaking of babies, both are doing very well after their excellent medical adventures. We were at the pediatrician 2 weeks ago and they had gained a whole pound each. By last week, they had gained another pound, which puts Zoe over 8 lbs and Wyatt close to 9. Wyatt has actually made the growth chart. Hooray!

Last Monday saw us heading to the Family MD after a trip to the polls. All three kids were due for shots. Zoe cried real tears after her needles (one in each thigh) and Wyatt almost turned blue after his... and Mommy was not far behind. Quinn too needed a jab and he took his like a trooper. He had to: Mommy quietly restrained him for the shot. Everybody got Tylenol and a couple of hours later no one was the worse for wear. Including Mommy.

No more ouchies pweeze.

Tuesday was a trip in the rain to Wyatt's cardiologist. They had called us the day before stating that there was an opening and they wanted to sedate him for his test (presumedly for a trans-esophogeal). Needless to say, between the 5 year old, the weather and Brampton Transit, we were very late and had to forgo the sedation (not that I minded terribly about that either). Instead, they did a regular echo and were very pleased to note that the ventricular aspect of his Atrioventricular Septal Defect has in fact narrowed significantly. On top of it, there is a significant amount of occlusion, meaning that part of the hole is mainly blocked. He therefore does not have the gross mixing of blood from the left to the right side, which means it is not overloading his lungs and, as we speak, is mainly asymptomatic. He will still need surgery eventually, but I am very happy to report that it can be held off until he is approximately 3 or 4 years of age. That is fantastic news. It allows his heart (and him) to grow and makes the surgery that much easier for everyone. Especially Wyatt.

Yay for me!

As for his Down Syndrome... well, to this humble, non-expert, he doesn't look that far behind his sister and most of that (to me) can be chalked up to him being a boy. He does have more variety in his vocalizations, when he uses them. He's more active as well (when he is awake); he can wiggle across the crib to Zoe. I'm pretty sure she can do the same, but she's too busy yelling. I've connected with Infant Development of Peel, so we're now on the waiting list for resources.

Next on our list of specialist appointments for Wyatt will be an ENT (Ear, Nose and Throat) and an opthamologist, all within the next month or so. The appointments have settled down to part-time status, which is a blessing too. Getting these kids out the door is a major manoeuvre; the planning, the anticipating, the preparations, the packing, the equipment... I swear, it would be easier to annex a small country. I had a Region of Peel nurse through here not too long ago and she was amazed at my "organization". I told her it was do or die, and she laughed. She's the mother of twins as well, which left me scratching my head a bit. But, it was nice to know that the cheese hasn't totally slid off my cracker. It's been pretty close some days...

It's the little things that are keeping me sane these days, I think. Well, I'm not totally sure, it could be the chocolate, so that excuse is as good as any. ;) I received a 1 TB (Terrabyte) drive for Christmas and recently I've been archiving all my photography, etc. I've also been archiving my writing, especially since I stopped by my MSN Page on Quinn's birthday and found it deleted. After that little heart attack/discovery, I set up an account with WordPress and have slowly been moving things over. As an interesting footnote here, there were quite a few pieces that I thought lost forever. I took a chance and relit the fuse on an old dispute with Facebook. It only took a few emails, but I got my original profile reinstated. I was delighted (but also a little disturbed) to see most of my stuff still as I had left it, three years prior. It had switched over to the new format but all the rest was the same. I picked off what I could and then reposted them on the WordPress Archives (and then deactivated the account). We shall see... I like the layout and interface there better, however I can (and am) importing posts from my Blogger account. I guess only time will tell. I gave it a facelift as well as it looked a little crappy compared to the WordPress design. I'm also undecided how to post to Facebook... The RSS feed is flaky (see dispute link above) and it's already given me trouble today. I may just have use an old fashioned cut+paste...

I hope everyone had a Happy Mother's Day. Mine, like most days, had its moments of supreme joy and moments where I wanted to stab myself in the face*. It's the hardest job in the world... but I wouldn't trade it in for anything. Even chocolate.

Quinn and Zoe (in a rare, non screaming moment)

Quinn and Wyatt

*Note: a turn of phrase, not an actual desire. Please, you don't have to call the experts, which would be me anyway, so relax. Really...