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Hello there, I've missed you.
Hopefully you've missed me too...

So many things to discuss-and what better time to catch up than on my first day off :) , while the little man is at daycare?

To start with, Caden had a great first birthday party, with lots of friends and family who brought awesome presents and also generously made donations in his name to Sick Kids-thanks so much to all who were able to share in such a special day!
Caden had so much fun playing with his little friends and cousins

Still can't believe he's a year old already...

I guess the next big thing that happened was our semi-impromptu trip to NYC to attend a conference put on by the "Vascular Birthmark Foundation". I had heard about the conference (which happened Oct. 8/10) a couple of weeks prior and had half-jokingly mentioned to Dave that we should take a road trip to Manhattan for the weekend. Next thing we knew we were making the trek with a one year old in tow! I have to say Caden was so good for the drive-especially the way there. He had a couple of naps, and otherwise just played with some toys, read/ate some books and enjoyed the scenery, with very little fussing. Here's a pic from about halfway through the drive there

The reason the conference originally sparked my interest was that not only would there be renowned experts in both KTS and the treatment of port-wine stains presenting some of the latest research, but those attending would also be seen and assessed in individual clinic appointments with said experts. I think it is always valuable to get a second (or third) opinion for any health issue, so the chance to have Caden assessed by these physicians was too good to pass up. Add to that the free night in the hotel and we were sold :)

Overall, the conference was good. The presentations gave some valuable information, and also confirmed much of the online reading I'd already done-they also provided a great opportunity to network with other families who are in similar circumstances. There were many people in the clinic appointments with widely varied conditions, some of them heartbreaking.

The clinic appointments were broken up into 4 or 5 "teams", each team comprised of 4-6 of the specialist physicians. We had requested to be seen by both the "KTS" and the "Portwine stain" teams, but ultimately got shuffled around to all of them, including the "hemangiomas" and "head and neck malformations" teams.
To summarize the experience, I will say that most of the physicians were excellent, providing input on Caden's condition and giving us advice for follow-up and possibilities for laser treatment etc. and of course they were all charmed by Caden who was chatting and flashing his smile at everyone :)

However, there was one doctor (a plastic surgeon) on the head and neck malformations team who was horrendous. He took a look at Caden and declared (for the benefit of the other physicians in the room) "well, what we have here is unilateral hemi-hypertrophy...blah, blah, blah" which is just doctor-speak for one side is bigger than the other. I let it go because I wanted to see what other brilliance would come out of his mouth, and he continued on saying that he could treat the swollen right arm by removing the skin, placing abdominal tissue expanders, and then grafting the non-affected abdominal skin onto the arm (!!!!!).
I couldn't take it any more, so I said "that sounds a bit drastic, don't you think?!" Of course not-this was a totally feasible treatment option in his eyes, so we quickly tried to wrap up the visit, and were relieved when there was a knock at the door telling us our time was up. Just to give an indication of how big of a jackass this guy is, a few days after arriving home I opened the file he had returned to us, and not only did it include Caden's info and pictures, but also ten other patient's charts/photos! Needless to say they have been shred, and an email forwarded to the organizer of the conference.

Things that we did come away from the conference with:
-we need to ensure that absolutely nothing can be done on a vascular level to help with the lymphadema, and we were given the name of a physician in Montreal who was recommended to get a second opinion.
-the portwine stain may be more difficult to treat or more resistant to treatment based on the location (arm/hand) and the underlying condition. Laser treatment is less effective over areas of hypertrophy/lymphadema. This however does not mean that we should not treat the areas, it is more of a disclaimer, and the laser could be quite effective on the chest/back/neck.
-Laser treatments are most definitely more effective the earlier they are done. There is no reason to wait to do the treatments (except for ensuring nothing can be done with the underlying condition first). In fact the research shows that the best results often happen when treatments are initiated in early infancy.

There's still more to catch up on, including the start of daycare, me going back to work, a haircut and Caden on the move, but I'll save it for next time-lunch beckons...

One year ago...

I am sitting here in disbelief that time has gone by so quickly. Exactly one year ago, I had known that the next day would bring the birth of my first child (I had just found out that day that the c-section would be the following day), and although I was running around like a mad woman trying to get all the last minute things done, I can admit that I was in denial-or perhaps just unaware that life was about to change forever.

Change is good. In this case, change has been transcendent. Motherhood has surpassed any possible expectations I may have had, and Caden has brought with him a whole new realm of happiness and hopefulness that morphs and grows, day by day, just as he does.

He is the most beautiful thing I have ever laid eyes on.

The other day I had a revelation. I was thinking about fate, and there being reasons for life unfolding in the way it does. I'm unsure as to whether I believe that our lives or events are pre-destined, but sometimes I do feel like things from our past have often prepared us for what lays ahead, however we may not fully realize it unless we reflect upon the past. I guess if you've seen "Slumdog Millionaire" you kind of know where I'm going with this...

Anyway, back to my revelation. I was thinking about how I was in my late teens and early twenties, as far as schooling/career path goes. I remember at the time thinking that although I was a good student in the sciences, I didn't really find myself passionate about any particular area, so as per my teachers' advise, I went to University for a Bachelor of Science. About half way through my second year I was really hating it, but I couldn't stand the thought of wasting two years for nothing, so I decided to just hurry up and finish my degree in 3 years. After graduation I still had no clue what to do, so I spent the next two years working to support myself and also try to pay down some of the student loans. During that time I tried to figure out what I should be doing with myself, and I'll say now that I kind of "fell" into Nursing School. I figured it was likely a secure job, or at least would provide me with some transferable skills so that work would be easy to come by. I also thought that I would be putting to use at least some of my science background and felt that maybe the BSc. would come in handy, thus not just a useless piece of paper and pile of debt. So off to school I went for another 4 years.

Fast-forward to the present day, and I have now been a Nurse for 5 years.

This is where the revelation comes in...

Perhaps all of that "useless" training; all of the schooling and knowledge gained through haphazardly stumbling through life, the decisions based on natural affinities for certain subject matter-perhaps it was all just preparation?

Preparation for the arrival of a son who was born with unique challenges, a son who would benefit from someone who could speak the language, do the research, understand the science, ask the questions and above all, advocate for the best possible care.

It's like I was made for him. No, I think that it's actually the other way around. I think he was actually tailor made for me-for us. We just had to put in the work first. The preparations may have taken a while, the path may have been winding, but we arrived exactly where we needed to be at the right time to meet our boy, our Caden.

Like I said before, change is good. And because of this particular change-the birth of our son-I am reborn.
 
I love you Bubba :)

I knew it.

So, a few months ago I suspected that Caden's iron levels were probably pretty low.  He had exceeded the 6 month mark when the iron stores he'd gained from me were likely dropping, and he was not taking formula or a bottle at all for that matter (still breastfeeding) and he had become uninterested in eating actual food, usually gagging while I tried to feed him some sort of puree.  He also went through a period of looking very pale and seeming quite irritable or cranky, which is out of character for him.  Soooo, I brought up my concerns to the pediatrician who agreed that it would be a good idea to do some blood work. 

Imagine my surprise when I called the doctor's office after a couple of weeks, and the receptionist looked up the chart and said the blood work all came back normal.  This seemed reasonable considering Caden's coloring had improved and he was now eating a bit better, I just figured maybe he had been going through a "cranky" phase.  Imagine my surprise again, a couple of months later when we had a follow up appointment, when the pediatrician mentions that Caden's iron levels were "borderline low" in that same bloodwork...

So about a week and a half ago, I brought Caden to redo the bloodwork as per the doctor's advise.  Yesterday I received a call from the pediatrician saying that Caden does in fact have pretty low iron stores and low hemoglobin, and he will now need to take an iron supplement.

I knew it!!  (Even Dave can tell you, I am always right...)

Skip forward a few hours to yesterday evening, just after Caden has awoken from a nap, and right around the time Dave gets home from work.  Caden is just not himself-he's lethargic, flopping his head on our shoulder, looking exhausted, just laying there when I change his diaper (unheard of!).  So the part of me that overthinks everything starts to wonder if this has anything to do with his low hemoglobin.  I tried to feed him and he gags and projectile vomits after only one or two bites.  I then become worried about putting him to bed this way, so off to the walk in clinic we go!

Turns out it was a stomach bug, which just got worse as the night went on-I think we changed the crib bedding 3 times.  It was off and on vomiting and diarrhea until he finally went to sleep at around three a.m.  I felt the same way I did when he was a newborn and I was just running on autopilot during all the night feedings.  A frustrating night to say the least, when you add in a fever and me second-guessing whether or not to give another dose of tylenol because Caden threw up mere minutes after the first dose. 

And then this morning I walked into his room to find a brand new shiny little boy smiling up at me from his crib.  I felt like hell, and there's Caden pointing, wanting me to lift him up so he can be carried over to the monkey decals on his wall and have a little chat with them.  If only I could recover that quickly :)

All kinds of changes...

Once again I have slacked on the updates...to tell you the truth, I am not good at doing daily or weekly posts, so then I get overwhelmed at the prospect of an update because so much has changed or happened with Caden by the time I actually sit down to write about it!  But I have decided to do my best and not feel guilty about it-after all big updates are better than no updates :)

So the last entry was exactly a month ago today, and there is so much to tell!  Caden seems to be such a little boy now, no longer a baby that I can just snuggle with any time I want, now it's up to him.  That being said, there is a new development that fully makes up for any sadness I may feel at the loss of infancy, and that is "hugs on demand".  For the past couple of weeks Dave or I can say "hugs?" to Caden and he will (usually) stop what he's doing, smile, and reach in for a nice cuddle :) it makes our day...

It's been a couple of weeks since the OT was last here, and let me tell you she will be impressed when she comes next.  About 2.5 weeks ago Caden was coming along with trying to pull up on things (with great effort) and kind of playing while kneeling, both things that the OT wanted to see advancing for the next visit.  Well, next time she comes Caden can show her how he: pulls up to standing with ease, stands and cruises around his crib and playpen, can sit back down from standing, can kneel for quite a while and play with his toys, easily transitions from laying on his belly to sitting etc., etc.  The only thing I think still needs some work is his crawling, which continues to be kind of a commando shuffle instead of a hands and knees full crawl, and he still somewhat drags his right leg rather than bend it (who knows why, but I'm assuming it's some sort of compensation for his right arm/side).  I'm hoping we will get our physio referral soon otherwise I'll have to take matters into my own hands and find my own.

As you can see, the boy's got a lot of teeth!  We are currently up to #9 (including 2 molars) with #10 likely making an appearance in the next week or so.  Teething has been relatively painless thus far (for us), with just a couple of night wakings requiring Tylenol.  As you may expect, with teeth comes biting, every so often we'll get chomped during a hug, or even just out of the blue-Caden's like a little shark, he comes at you with his mouth open, all cute, but then he sinks his teeth in...hopefully this phase doesn't last long! 

His eating is continuing to go well, and I've cut down a bit on the breastfeeding in preparation for weaning before he starts daycare.  He doesn't drink too much from sippy cups though, so I'm hoping that improves soon and I can relax a bit and know he's getting enough fluids before I cut him off completely from the boob ;)
On that note, I did start him on whole milk today-I figured it's almost time anyway, he's not drinking much, and maybe he'll like the taste and drink more from the cup than he does when it's just filled with juice or water.  We'll see how that goes, so far so good!

We have been continuing with the lymphatic drainage massage which I have been performing daily and bringing Caden to the RMT bi-weekly to have done.  Since we have been doing this daily (with one or two missed days here and there) his right arm has maintained it's decreased size and swelling, and the skin continues to be soft and pliable as opposed to the puffy tightness it had been prior.  I will admit that I haven't been bandaging the arm as often for compression, this is due to the fact that when I do apply the dressing Caden does not move or use that arm nearly as much as usual, and I don't want to limit his development or ability to play.  We also received the revised night time garment which fits well but does take some getting used to, so we will be slowly integrating it into his routine.

Over the past week or so, Caden's "full-hand point" has been refined into the one-finger point.  He loves having us carry him around the house as he points out various things expecting us to bring him over to them, all the while chatting or grunting.  It's definitely become a game and I'm fully aware that he's got us trained :)

We've started another session of "creep, crawl and toddle" at he Early Years Center, where we are also doing a "Baby Picasso's" class.  During the last couple of classes Caden has turned into quite the little ham; pointing, "singing" along with the music, yelling to get the other kids' attention and flashing his toothy smile at whoever will take notice. I'm hoping these experiences help to get him semi-prepared for daycare, I guess we shall see...

I can't believe that in two weeks our little boy will be 1 year old.  He is truly the love of our lives and I can't believe how much he has shown us about what it means to be a family, a fighter, and the best gift any two people could ever hope for.  I will most definitely be doing another post closer to his birthday about what I've learned and the love I've experienced over the past year...

Finally, I'm including these pics that I took while Dave gave Caden his first taste of a Popsicle a few days ago...enjoy :)

...I think he likes it...

short update

Hey y'all...
I just have a few minutes, so i'll make it a quick one:
-Caden is eating really well now, mostly enjoying modified versions of our food
-He is also sleeping better; there have been a few 12 hour sleeps, but mostly 6-8 hour stretches with 1 or 2 awakenings per night
-his arm is responding well to the lymphatic drainage massage; it is softer and looks smaller overall.  We also received the "pyjama top" compression garment, which we have not yet used successfully because it needs alterations
-I am looking into getting a jogging stroller (more for comfort/ease of use off-roading rather than for jogging) and now I have an even better reason-yesterday the brake on Caden's stroller decided not to work anymore...and now I am dealing with trying to get a replacement...yay for poor customer service!!

Let's end on a happy note, here is a cute video of Caden giggling at me making funny faces...

10 months

So Caden turned 10 months old last Thursday, and I can't believe how fast the time has gone by.  It seems like over the past few weeks time has been moving in fast-forward, especially when I think of the things the little guy has been doing lately...

About 3 weeks ago I had just finished feeding Caden when I heard him crunching on something, so I immediately opened his mouth and to my surprise there was not just one, but 4 new teeth on the top!  Since then they have become much more visible in particular when he's smiling and laughing-it's too cute :)  Thankfully the grinding is few and far between...

He has also just caught on to the waving thing over the past week or two.  It really is amazing to see how they learn things, he seems to know exactly when it's appropriate to wave hi or bye, and we'll even catch him waving out the window while in the car or in the mirror at himself :)

Although he isn't crawling yet, he can still somehow get from A to B though a combination of rolling, dragging and pulling, and I still find myself being surprised when he manages to get a hold of something on the other side of the room...guess I need to get those gates up and make sure everything is babyproofed!

Caden has become very chatty, he's making all sorts of noises (including screams) and he will mimic us when we make certain noises to him.  He also seems to understand simple words or directions, like if we point at something and tell him to look, if we say mamma or dadda he will usually look at myself or Dave, he knows to look at the dog when we say "Rufus" and so on.

He has also become much more curious with other little kids and with toys-he really examines his toys and figures them out much more thoroughly than he has in the past.  He can now figure out that there are doors and compartments to open, that there are hidden parts and various buttons to be pushed to activate music and so forth.  I love the serious expression on his little face when he is into playing with his toys :)

Things are getting better on the eating and sleeping fronts as well (thank goodness).  Three nights ago Caden slept for an astonishing 12 hours straight which is unheard of for him!  However that doesn't mean I slept well-I still got up a couple of times to check on him out of habit.  Since then he has gone back to his schedule of bedtime at 8 (or so) wake up at 11 or 12, and then again at 6 in the morning.  I can't complain about this because the alternative was to be waking up every 2 hours...
Last week Caden was sick for a couple of days with a fever, projectile vomiting and diarrhea, so we went to the doctor to get checked out , and found out that he had again lost weight.  This could have had to do with him being sick, but I had thought he was doing better at eating solids, so I was surprised.  So now we have another appointment in 1.5 weeks to check again, and it is my goal to feed him as much as I can before then to try and fatten him up ;)  I've finally figured out that he likes to eat modified grown-up food as opposed to baby food, so I've been experimenting with making baby versions of whatever we are eating...so far he seems to like the results, and he's not gagging too often which is a bonus!

Perhaps the most exiting development is that the Lymphatic Drainage Massage seems to be helping quite a bit.  Over the last few days Caden's arm has been looking and feeling smaller than it has in months.  I have been wrapping it with the compression bandage most days, which seems to help maintain the effects of the massage, although I will admit I haven't wrapped it in a couple of days because it does limit the movement of his arm and his ability to play.  The massage therapist recently measured Caden for a custom night-time compression vest/pajama top which should be ready in a couple of weeks.  The amazing thing about it is that the company that makes the garments has said they are giving us this first one free (normally it would cost somewhere around $1000) which is really cool-apparently they have a kids program where they get one garment free or discounted each year, I guess because the little ones grow out of them so quickly...whatever the reason I think it's fantastic and at least it gives us a chance to see if the night time compression works without spending a fortune!

In summary, Caden is as gorgeous and awesome as ever, and he is growing up way too fast! 
Good night, time for bed :)

Updates

Well, on Friday July 2nd we finally got in to see the specialist at the Vascular Anomalies Clinic at Sick Kids.  I'm really happy to have him involved in Caden's care because he seems extremely knowledgeable, very nice, and truly empathetic towards Caden's condition, as well as our concerns as parents.  He finally told us what we've pretty much known all along; that Caden does indeed have Klippel-Trenaunay Syndrome.

Towards the beginning of his explanations and history taking, this doctor did say something that hit me quite hard, he said "first of all, I don't want to give you any false hope-Caden's arm and chest will never look normal". Even though I felt I had long ago come to terms with this reality, hearing it out loud made my eyes sting with tears, and I had to fight hard to blink them away and concentrate on the rest of the conversation.  Although I know we can never get to the point that Caden will look as though there was never any birthmark or swelling, I continue to believe that things can most definitely be done to help minimize future disfigurement, and I will forever be seeking out alternative treatments-more on this later. 

So in summary, during this first appointment Dr. J discussed that after an initial work-up, most of the KTS patients are seen at the clinic about once a year-barring any complications.  There is not much done in the way of medical or surgical treatments unless problems arise.  He did say that at any point should we have concerns or wish to be referred to specific specialties for assessment he would have no problem with that.  I asked his thoughts on alternative therapies such as the Manual Lymphatic Drainage massage, and he said that he's all for trying things that may work, as long as they aren't harmful, so to go ahead and try.  I asked about lasering the port-wine stain, and he said that the dermatologist would be best to discuss that with, but there will be a lot to laser.

I think people get the wrong idea when I ask about lasering, like I only care about the aesthetic aspect.  My real concern is what the port-wine stain can possibly turn into if not treated.  Sometimes in adulthood, the mark can change from a basically flat reddish-purple, to much deeper purple raised and thickened skin that is almost puffy or "cobbled" in appearance.  As you can imagine this would likely lead to further disfigurement and complications, so if lasering in childhood can help to lessen some of these effects, why not go for it?  From all the literature I've read the consensus seems to be the earlier the laser treatments begin, the better the results.

Anyway, back to the appointment...I also asked about the possible use of a compression garment, because Caden's malformation involves the lymphatic vessels I figured the swelling is likely due to an accumulation of lymphatic fluid, therefore compression could help to move the fluid.  Dr. J said that they don't usually offer or recommend these garments, unless it is in an older child whose lower limb is affected and is becoming heavy/causing problems with mobility etc.  I was a bit disappointed because I feel like maybe a compression sleeve could help a little bit, and also protect Caden's arm at the same time, so what's the harm?  This is something I'm not giving up on, and I think it requires further investigation...

So at the end of the appointment we were told that we would be called to come back in for another ultrasound of Caden's liver and other abdominal organs (even though we had an ultrasound of the liver done the doctor wants to do a more extensive one at Sick Kids).  We were also given requisitions to go for more bloodwork, x-rays and medical photography before we left for the day.  The photos were relatively painless and tear-free, but then came the bloodwork and finally the x-rays, by which time Caden had a meltdown-it didn't help that I had to hold him like he was hog-tied around some block on the table so they could get the necessary images.

Then it was back home just in time to make it to the appointment for the Lymphatic Drainage massage.  The session went fairly well, the therapist (Kim) took some history and explained what MLD was about, then she proceeded to work on Caden a bit (by this time he had no naps and was getting cranky) and discussed the possibility that a compression sleeve may help, but that we could first try wrapping/bandaging the arm after the massage to see the effect it may have.  I agreed to this and she bandaged him up, telling me to take it off before he went to bed and see if there was any improvement to the size of the arm-if there was it would be a good indication that compression may help. 

That evening when I unwrapped the bandage, I was quite surprised to see not only that Caden's arm looked overall smaller, but that the skin and soft tissue felt very pliable-not tight or hard at all, to the point where I could feel the bone in his forearm (which is unusual).  This only lasted a couple of hours though, before it was almost back to normal.  It probably didn't help that he was rolling around in his sleep and laying on that side.  However, this did give me some hope that perhaps regular massage and consistent compression can be of some help.  Kim taught me some basics of the massage and how to wrap the arm so that I could continue doing it hopefully daily between visits.  The first two times I did it Caden's arm looked a bit smaller, but his hand seemed extra puffy, and yesterday it didn't seem to help at all, so I think I'm doing something wrong-good thing we have another appointment on monday!

In other news Caden had his 9 month check-up at his GP, and everything is going well except for his weight.  Since the end of April he has lost weight-that's right, he weighs less now than he did over 2 months ago :(
I suspect that this has to do with him not wanting to eat solids, so now I really have to force the issue.  Thankfully he has started to eat most of the foods I've offered him in the past few days so hopefully he keeps it up-we have an appointment to re-check his weight in a month so we'll see...

Oh, and finally the GP had the results of the liver ultrasound, and essentially further follow-up is needed, the ultrasound report just acknowledged that there is some sort of lesion, but that a dedicated MRI should be done to assess it-great, not another MRI :(  So I guess I'll be contacting Sick Kids again to figure that all out...

Must go to bed now...but not before posting a pic or three of the little man :)