Back to the Blog...

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 :)

better late than never!

I know, I know. I'm a real slacker when it comes to updating this blog. It's just that I'm such a slow typer (i'm sure that's not a word) and so many things have happened in the past month that I get overwhelmed and then my procrastination goes into overdrive...

Soooo, as for the results of the MRI:
-First of all, Caden's brain is free of any malformations, which is awesome :)

-It looks as though the type of vascular malformation that Caden has mostly involves the small vessels; more specifically the capillaries and lymphatic vessels, as opposed to involving the larger veins and arteries. A doppler ultrasound is recommended as follow up to ensure that none of the larger vessels are involved.

-There is also some bone involvement which pretty much follows the pattern of his port-wine stain and swelling. That is to say that the bones in his right arm, shoulder blade, some of his ribs and vertebrae are somewhat "expanded". There's also a slight curve to his spine. There may be minor involvement of the bone in his left upper arm. Further x-rays will need to be done to determine the extent to which the bones are affected.

-The skin, soft tissues and muscles of his right arm and right upper torso are thickened-anyone who has seen him could tell you this without an MRI...

-There are a few enlarged lymph nodes in his right armpit (we have been able to feel a lump there since birth)

-There is a "non-specific" lesion seen on Caden's liver. This could possibly be another grouping/malformation of blood vessels, but an ultrasound will need to be done to see what it is. The annoying part is that the doctor who gave us the results didn't mention this, I only noticed it after we left when I read the MRI report...

-The report indicates that the findings may be consistent with Klippel-Trenaunay Syndrome...my guess is that the radiologist doesn't give a diagnosis, only reports the findings, therefore in order to get a diagnosis of KTS we just need the specialist to look at all of the imaging and say "yup, that's what it is"

A couple of days after getting the results, we had an appointment with the pediatrician, who had also received a copy. After fitting in all my questions, and discussing the results in detail (including the liver lesion) we left the office to go to the local hospital for bloodwork. Caden had seemed especially grumpy and pale looking for a couple of weeks prior, and because of his recent refusals to eat solid foods I suspected he may be anemic. His motto seems to be "all breastmilk-all the time" something that needs to change prior to starting daycare! The pediatrician also made a referral to have an ultrasound of the liver, and referrals to both physio and occupational therapy, which will hopefully minimize any movement/postural issues related to the KTS and also assess and address issues with feeding respectively.

Since then we have had the ultrasound, but no results yet...I'm hoping this means that there are no big issues, because it's been over 1.5 weeks and I'm assuming they would have sent the results to the doctor ASAP is there was anything significant. Also the bloodwork was normal so I guess there must be another reason for the grumpiness and pale skin ;)
In the meantime I've been investigating Manual Lymphatic Drainage, a technique performed by individuals with specialized training (usually RMT's or physiotherapists), and which can help to move some of the fluid and lessen swelling to the affected limb/body part. I found a woman locally who is an RMT and who is trained to perform MLD, and we have a consult this friday with her. In my online research, I came across a very interesting illustration about the way lymph drains from the body, here it is:

I was pretty shocked when I saw this image because the right drainage area is almost an exact diagram of the pattern of Caden's swelling/port-wine stain. So it seems that the malformation certainly involves this area of the lymphatic system.

A couple of weeks ago I went up to a friend's cottage near Parry Sound. It was quite the event because I also brought Caden, and Dave had never been away from him overnight before (never mind 2 nights!). The cottage was awesome and it was great to hang out with the girls again!
However, the first morning I woke up (well, I never really slept I guess) and noticed that Caden's right arm looked quite a bit larger than usual, slightly purple and the skin was very tight and shiny. The tightness and colour resolved after half hour or so, but the arm still appeared larger than I'd ever seen it, so I chalked it up to him lying on it for most of the night. Since then, his arm has fluctuated a bit in size and varied in colour, but it has yet to go back to the size it was prior to this "jump" in the swelling. I would estimated that it appears about 20% bigger than it was just a few weeks ago.
About a week ago I contacted the nurse from the derm clinic at Sick Kids to discuss that I was concerned about this overall increase in size. She was probably not the most appropriate person to call, but currently there is no other option because we are still waiting to be seen by the vascular anomalies clinic. The end result was that they booked us an appointment to be reassessed on July 7.

Then, last Friday, Dave, Caden and I went to the Eaton Center for a birthday shopping trip (my birthday was Saturday). Probably not too smart given the G20 protests, but we didn't encounter any of those problems. What we did encounter was Caden's right arm swelling larger than we'd ever seen, with tight, shiny, hard skin that was somewhat molded to the shape of the stroller wall he was leaning against! Needless to say, we rushed over to Sick Kids in hopes of being fit in to the derm clinic, only to discover it was closed. Our next best option was the Emerg, so over we went. After being checked in pretty quickly we settled into a nice private room with a tv, and proceded to spend the next 7 hours there. Of course after the first hour his arm looked almost back to it's new "normal" size, but by that point we were invested and wanted answers. By the time we left Caden had received an ultrasound of his arm, confirming that there were no clots or bleeds. We got to see that the main blood vessels (veins and arteries) of that arm are normal from his armpit down to his hand-which in itself was worth the 7 hours. The final stretch was waiting 2 hours for bloodwork to come back, and it was normal. The ER doctors did consult with Caden's main dermatologist who wanted to see him in the clinic on monday.

And that brings us to this week. Monday we went in to see the dermatologist, and after painfully explaining Caden's condition to her resident who didn't speak english, we finally got to see her. She totally agreed that the swelling shouldn't just be left to go on and on, and that we should be seen soon by the vascular people, as opposed to the projected couple of month wait. She must have either thought the swelling was really serious or she pulled some strings because we now have an appointment for this friday with the vascular clinic-the people who will likely treat/follow Caden's condition from here on out. I really need to make a list of questions because I know I will come away from it thinking "oh I should have asked that!".

In non-medical news, Caden is as cute as ever, and just turned 9 months old yesterday. He's having some eating and sleeping issues, but he's still awesome so I can't complain :)
Dave also had his first father's day, and it wouldn't be complete without the father son pic from that day:

hurry up and wait

Well I've been slacking a bit on the updates, but there's a few things to vent about since Caden's MRI last friday at Sick Kids.  We were supposed to arrive by 8am for the procedure to begin at 9.  We ended up getting there for 7, checked in, then had to wait around for a bit trying to relax with a coffee.  We were then taken in around 8 or so to have Caden's vital signs done and go over some of the information with the nurse.  Closer to 9 we got him changed into a gown and were finally called in to the room with the anesthetist, who again went over some questions and gave us the opportunity to ask questions.  It was at this point they mentioned that the MRI was actually booked for 3 hours, not the 1.5-2 hours we were originally told.  I also was not expecting them to swaddle Caden and put the gas mask on him while we were still there.  It was heartbreaking because he was crying and struggling and I had to try and soothe him by talking to him right in his face until he went to sleep.  Afterwards I said to Dave that I felt a bit woozy because I could smell the gas while I was that close to the mask.
From that point it was time to wait for 3 hours, and by the end of that time we were so anxious to see Caden, we rushed into the recovery room as soon as they called us.  It was upsetting to see our little guy completely out of it.  He was awake, but all limp and just blankly staring at the nurse with his mouth open.  Luckily, he came around pretty quickly, and except for seeming hungry, tired and a bit weak, he was almost back to normal by the time we got home.

About an hour or so after we got home, I noticed his face was getting flushed red and hot, but he didn't have a fever at all.  I called the MRI nurse to ask about possible reactions, and she consulted with the other staff who agreed that the general anesthetic would be out of his system already, but the contrast dye does last a bit longer, so any reaction would likely be due to that.  I asked if I could give him benadryl, they said it was a good idea, but to take him to emerg if the reaction didn't improve.  After giving the medication, the flushing seemed to go away, and then Caden was off to sleep for a bit.

After he woke up again, and for the rest of the evening, he kept doing this strange spastic head shaking-as though he was shaking his head "no" quickly, it would last for 5 or so seconds each time.  At first glance it looked almost seizure-like, but we could stop him from doing it by gently touching his face, and his eyes weren't rolling or unfocused, so initially I wasn't too worried.  But then of course I went online and started looking up side effects of the contrast dye.  Dave was also getting concerned that he kept doing it, and I was starting to think that I would be uncomfortable putting him to bed and going to sleep myself if something was wrong.  After a quick call to Sick Kids and being unable to get in touch with anyone in the MRI department, we decided to go to McMaster children's emerg, rather than our local hospital that deals mostly with adults.

Bad idea.  We had to wait from about 11:30 until after 3 in the morning, only to be seen by an incompetent doctor who basically just reiterated what I was saying, and then prescribed Caden ativan.  Since I didn't trust him I asked to have a written prescription rather than him be given the meds there, just so I could check with the pharmacist.  We may as well have stayed home for all the help we got there.  On the way home we stopped at shoppers pharmacy and I picked up the one pill that was prescribed after consulting the pharmacist to ensure it was safe.  When we got home I ended up giving Caden only half a dose because he was so tired  and wasn't shaking his head much anymore.

On Saturday there were a few incidents of the head shake, but not nearly as often as friday, and then fewer again on Sunday.  I haven't seen any today, so I'm hoping it was just a transient thing, possibly related to the MRI contrast, and maybe compounded by the stress and exhaustion of going through the procedure.

As it stands, we now have to wait 3 weeks for the results of the test, however while Caden was in recovery, the nurse had mentioned that there weren't any urgent findings that would warrant immediate consultation during the MRI.  I am assuming that means there weren't any issues with his brain or other major organs, and that we are dealing with vascular malformations mainly in the arm, but we will find out for sure on June 7.  Until then it's good to see the little man back to his normal self :)

MRI

Well it's finally come-Caden will be undergoing an MRI tomorrow at Sick Kids.  As I've mentioned before, the procedure is to determine the extent of the vascular malformation that has caused his extensive port-wine stains (red birthmark) and the swelling/enlargement of his right arm and shoulder.  They think they know that these symptoms are all part of a syndrome, potentially "Klippel Trenaunay Syndrome" or KTS, but the MRI needs to be done to confirm a diagnosis.  This imaging will also help the doctors to decide what course of treatment would be appropriate, as it will pinpoint the exact vessels that are affected.  For the MRI, Caden will be given a general anesthetic and will also be having a contrast dye to give clearer pictures of the blood vessels.  The whole thing is expected to last about 2 hours-during which time Dave and I will likely be nervous wrecks as we are not allowed to accompany him into the procedure area!

We won't be able to know the results for 3 weeks, so for now my nervousness is only related to the procedure-I'll deal with the results later.  Whatever the outcomes, what we do know is that we have a very happy and charming little guy (wait-make that "big" guy ;) who is completely oblivious to any physical concerns, and who we love with all our hearts...

Love you Bubba :)

7 months

Well, this past thursday Caden turned 7 months old... it's crazy!  Where has the time gone?  He wasn't as excited for this milestone as we were, due to the fact that he was sick for the past week.  On tuesday night he seemed a bit cranky and unusually tired, and then he threw-up on me before he went to bed.  He woke up at about 2am with a fever, and went back to sleep around 4 after the tylenol had taken effect.  I brought him in to the doctor the next day because he wasn't his usual self-he was sleepy and upset on and off.  The doctor suspected a minor chest or sinus infection, but prescribed antibiotics anyway because his fever kept coming back when the tylenol would wear off.  Let me tell you, the antibiotics have reeked havoc on his gut, he's basically peeing out his bum, and having explosions every hour or so, the diapers are unable to contain the watery consistency!  The good news is today and yesterday he was fever free, and somewhat back to his old self smiling and laughing :)
One positive side effect from Caden being sick was that he actually slept for 7+ hours the other night!  Hopefully this becomes a trend and isn't just a fluke.  Also, it's good that he is getting the sickness out of the way now-hopefully this means he won't be sick in 2 weeks for his MRI, because it would be cancelled.

About 2 weeks ago we went to Sick Kids for an appointment in both Physio and dermatology.  Caden has had a small rash on his right hand (kind of like eczema) and it seemed to be spreading.  They gave us a cream for it and said it was unrelated to his birth mark, which was a relief.  At the physio appointment they assessed Caden and gave us some good exercises to do with him in regards to rollong over and learning to sit on his own.  They said that he is only slightly delayed in the sitting, but that he should be getting the hang of it very soon-he's already showing signs of starting to do it.

Other than that stuff, we're just trying to go to the usual groups and get out with the other moms and babes.  Here's some recent photos of the little sicky :)

Swings and things...

A few days ago (during the beautiful weather) Caden and I went on a neighborhood stroll with Danielle and little Elly, this included a stop at the local park to check out the swings. At first we just held the babes as we sat on the "big-kid" swings, but then I decided to see if Caden was actually big enough for the baby/toddler swings. No surprise, he fit just fine, and was loving being gently pushed-it probably reminded him of his swing cradle which he is now too big for :) Thanks to Danielle for capturing these awesome pics!

In other news, I got a call last night from the MRI department at Sick Kids, finally confirming Caden's procedure for May 14th. It sure has taken a long time, and they mentioned that we should keep an eye out for any signs of a cold, cough or flu symptoms in the days leading up to the MRI, because if he were to get sick it would have to be rescheduled. This makes me want to quarantine him for the week before, just so we can be sure to go through with the appointment! Part of me is glad the appointment is finally here, but in another way I am nervous for both the procedure itself and for the results. He will have to be put under general anaesthetic for a couple of hours, during which time I'm sure Dave and I will both be pacing the hall/waiting area, there may even be a few tears shed-I can't guarantee anything. As for the results, I have just decided to face the reality that whatever they discover, we will be able to deal with it, and so will Caden in the same way that we all have for the past 6 & 1/2 months. Without knowing anything about his condition, we threw out our list of names the night before he was born, and we picked a totally new name-partially because of it's meaning, and mostly because we liked the name: "Caden" means little fighter, or "spirit of battle" depending where you look. I now know that this is the perfect name for our boy, who I'm sure will continue to bravely face any adversity that may come his way-all the while charming everyone with his infectious grin and sparkle in his eye ;)

Yup, 2 teeth :)

Well it's official-Caden's 2nd tooth has broken through and I must say, he didn't put up too much of a fuss!  I could definitely see and slightly feel a lump below the surface, but now there is the top of a sharp little tooth poking out.  Unfortunately he has bit down on me a few times while feeding, something that I hope comes to an end really soon otherwise we'll be switching to formula :(  I was saying to Dave tonight that when his top teeth start to come in, I'm going to be nervous breastfeeding-his jaws will be like a bear trap!!
It is very cute/funny how he has been smiling since these teeth have come in-he seems very aware of them, and loves to show them off.  Here are some of the latest pics:

 I can't believe the face he's making in this one, such a ham!:

And just because I can't have just a daddy one and no mommy one:

At least he's still smiling while he's teething!

Playtime...anytime?

Well I should have known that Caden's 2 night streak of going to bed fairly early (if you consider 8:30 & 9:30 pm early!) was too good to be true.  Last night he woke up just after 1:00am to be fed, and fell back asleep, only to reawaken a few minutes later, and lay in his crib chatting and giggling to himself until about 2:30, when Dave finally got up and picked him up.  He was fully ready to play and was wide awake smiling and looking around the dark room.  He finally went back to sleep just after 3:00, but it was only because I opted to feed him again.  Now he is still up and alert, and it is currently 11:00pm, oh well...

I am liking his new playfulness though-after months of just tossing toys around haphazardly, he now is intrigued by most of them, and will smile at certain ones he really likes.  Recently, his Nanna got him a sock monkey because while we were in the store he just loved it and of course like any grandma she had to get it for him ;)  Here is a pic of him and his new friend "Charlie", If I had been able to get the camera earlier I may have captured him smooching the monkey, but I think this one's good enough!

Tooth #2?

Well, today Caden has been pouty and crying on and off all day-something we are definitely not used to!  At one point though, I was trying to make him smile and he was literally laughing and crying at the same time-to the point where Dave and I couldn't tell either way.  I decided to feel his gums, and low and behold there seems to be a bump underneath beside the already emerged tooth.  Let's hope this one comes through as quickly as the first one :)

Well, as promised here are some "after" shots of Caden eating some peaches.  He wasn't too sure about them at first, I think due to their "tartness", but eventually he got into them and this is the result:

As some people may know, Caden sleeps in his crib, but in our room.  This started for obvious reasons, but has continued through the winter months due to the fact that his bedroom is above the garage and has been quite cold until recently (okay, and maybe a little due to the fact that we can't seem to let go, and we dread him being out of sight during the night :) .  So right now his room is basically storage for all things baby, and it looks dangerously close to an episode of hoarders.  However, this allows me to get a nice little surprise every few days when I discover things in there that I had forgotten we had.  Yesterday I spotted this large stuffed giraffe and brought it out to Caden, who was more excited to see it than I've seen him be for any of his other toys!

Too cute...

Belly laughs

It was one of those moments I wish the video camera was within easy reach-Dave was standing and holding Caden, while I was behind, making funny faces at him and such.  I decided a little peek-a-boo may make him laugh, and boy was I right!  I would duck down out of sight, and suddenly pop up saying "boo!" over and over again.  Again and again Caden would start to giggle, which then turned into a prolonged belly laugh, which in turn would make Dave and I laugh.  In the end we all had tears in our eyes, and the stomach muscles were a bit sore-but it was well worth it :)

We finally decided to go and get a high chair, so here is Caden's first picture in it:

No more eating on mom or dad's lap or in the bumbo...
This is the "before" shot, I'll have to upload some "afters" from my camera soon :)

Today we had Easter dinner over at Grandma's house, but yesterday we went to meet some long lost family of Dave's, and even though we were there for a good 6 hours or so, I have to say Caden did really well.  He was charming everyone with his smiles and giggles of course, and other than that he was just pretty easy-going the whole time, except for the very end when it was almost bed time!  He was also enthralled watching the older cousins playing around. Good job buddy ;)

We have a tooth!!

Well, Caden is 6 months old today, and where has the time gone!  I remember (not so long ago) thinking things like "I wish he would focus more on our faces", or "when is he gonna have his first laugh?" and now he's doing all that and so much more.  I still find myself wondering when he will be able to sit up on his own etc., but I guess the lesson here is to not wish the time away-he will meet all his milestones in his own time-we just need to sit back and enjoy ;)

In other breaking news-we have a tooth!!  This past Saturday Caden was trying to suck on my hand and suddenly I felt something sharp...a tooth.  It hasn't totally emerged yet, but it's definitely there on the front/right bottom gums.  I guess it is yet to be determined what effect this will have on breastfeeding, only time will tell. 
(Now the past week's worth of crankiness and messed-up sleep schedules are making sense).  To make up for the crankiness, Caden has now started to reach for me with both hands and snuggle in when I pick him up ;)

I bought a sewing machine a few days ago.  No, I don't know how to sew, nor have I ever used a sewing machine, but I have decided to give it a try, and when I looked into classes it turns out you need to bring your own machine...who knew?  I figure it'll give me a bit of a creative outlet, and at least I will be able to make use of the skill if any of Caden's clothes need to be altered due to his arm.  I have already had to cut the armhole of his sleep sack to make it bigger, so I may as well learn how to make it look good!
Well, a crying baby beckons, more updates to come this week-we have a few Dr's appointments with the little man...

New look

Thanks to Dave for the new look of the blog-especially the header! I laughed out loud when I opened the page and saw all the little framed Caden heads; the expressions are priceless :)

Making strange

So last weekend Dave and I went to a wake/memorial for our old boss. It was in Toronto at a restaurant/pub on Queen Street, and it was on a Sunday night starting at 7pm. Quite a few of our friends from all over were also attending, so we figured this was an excellent opportunity to pay our respects as well as visit with a bunch of people we hadn't seen in a while, or who we would have to drive pretty far to see. Also, some of these friends had yet to meet Caden, and since he's been pretty portable and easy going so far, we figured we'd take him with us, and just stay for an hour or so. WRONG! He lasted a few minutes, but as more people started to arrive, and strange (or even familiar) people were talking to him, and the noise grew, and the lights dimmed, well, the meltdown started. He jutted his lower lip out and immediately his eyes welled up and turned red, and he started a strange cry which I can only describe by saying it sounded like "be! be! be! be! be!, woo! woo! woo! woo!"
It was heartbreaking. Needless to say, Dave took him out to the car to calm him down, and I joined him soon after. It's a good thing my sister lives essentially across the street, so we went over for a visit and of course Caden was all smiles by then...Oh well, we learned our lesson-babies and bars don't mix ;)

But now I'm starting to think it wasn't just the atmosphere. Yesterday afternoon, after a nice stroll in downtown Oakville with Danielle and Elly, I decided to drop by my work with Caden. At first he was all smiles and being his flirty self, but then, once again the eyes welled up with insta-tears, the lip jutted out and the crying began! The worst part is that he looks terrified when he does it. I think it had to do with the fact that again there was a bunch of people all around him chatting and cooing. However, I hope this doesn't continue for very long, and I wonder if it was just 2 isolated incidents, or if he's going through a period of "making strange". So far we've been able to bring him anywhere with us, some places have had a lot of people or noise, and he's been comfortable being passed around, many times falling asleep in the process. We thought that by exposing him to a lot of people and situations he be adaptable, and he has been, but I guess there's going to be times when he is just not up for it.
Sorry buddy!

Playing catch-up

Okay, so here goes:
In the past 6 months Caden has gained weight like a champ. For the first 6-8 weeks he gained almost a pound per week (I guess the norm is around half a pound a week, and to at least double the birth weight by about 5-6 months). Well, I haven't weighed him in a few weeks, but last time I did he was almost 23lbs-so I'm guessing he'll be tripling his birth weight by 6 months ;)

On the medical front, he has been to Sick Kids 3 times: first for his dermatology consult where they examined him and took photos. The doctor basically said she believes that he likely does have KTS (Klippel Trenaunay Syndrome) but an MRI is needed to confirm the diagnosis and get more information. KTS is basically characterized by a combination of the following: port wine stains (the birth marks), vascular malformations (abnormalities in growth of blood vessels-could be veins, arteries, lymphatic vessels or a combination), and tissue hypertrophy (overgrowth of the tissues in Caden's right arm/shoulder, leading to the swollen appearance). After the MRI we will most definitely be referred to the Vascular Malformation clinic, where we will hopefully get answers to our growing list of questions, and find out what treatments are available for our little guy.
The second Sick Kids excursion was to the MRI unit for a pre-assessment and for the nurse to decide whether she can administer sedation, or whether Caden will need a general anaesthetic, therefore requiring an anesthetist be present for the MRI. After a quick once over by her and the nurse supervisor, it was decided he will need to have an anesthetist put him under, mostly due to the fact that he's never had any medical imaging to tell what exactly is going on under the birthmark/swelling. I am glad they aren't taking any risks, even if it now means his MRI isn't until May 14th (Apparently it could have been done in December or January if it was with nurse-administered sedation). Soooo, Caden will have his MRI in May, and he will be put under, they are also going to have to use a contrast dye to get really clear images of the blood vessels, and after a bit of advocating on my part they will be including his head/brain in the scan. I asked for this due to the fact that the port wine stain goes up onto his head a little bit behind his right ear. I don't expect them to find any vascular malformations in his brain, but I would have hated for them not to have done it, only to decide in a couple of years that it may be worthwhile checking out-at which point he would have to be put under again I'm sure. Because of this addition, the MRI will be 2 hours long...something I'm not looking forward to.
Our most recent Sick Kids trip has been to the Physiotherapy unit. We were noticing that Caden's right shoulder seems pulled up a bit higher than the left, and that his head tilts a little to the right. Also when he was sitting in his bubo chair he slumps over to the right side. We figured this must have to do with the sheer bulk of that right arm/shoulder, and maybe that the muscles in his neck are tight on that side. So we asked for a referral to physio. The therapists assessed Caden's function and gave us some simple exercises to do with him, but they said that overall he seems to be developing well. These therapists also work closely with the Vascular Malformation clinic, so I'm sure once we have a lot more answers after the MRI we will be utilizing them more.
Other than the Sick Kids stuff, Caden has had all his regular checkups and vaccines with little to no problems. He is off the growth chart for both height and weight, and has had only one episode of a stuffy nose (knock on wood). Other than that he is in great health.
We get to meet his new pediatrician at the end of the month (he needs a family doc and a pediatrician because I guess now pediatricians don't do primary care like check ups and vaccines-I know, lame!), she will also be the one who follows up with Sick Kids regarding the KTS.

A lot of people ask us whether Caden is bothered by his swollen arm. To tell you the truth we haven't noticed even one instance where he has seemed in pain because of it, and it doesn't appear to have affected the function of his right arm or hand. He still grips tightly and reaches for things, and he doesn't ever wince or cry in pain when we touch or move that arm. The main things we do notice are that he has a bit of a harder time rolling over his right arm (larger speed bump ;)) and we have to make sure that his shirts/sweaters have a lot of room to stretch on the right sleeve. The coloring of the birthmark also seems affected by temperature and sometimes pressure. If he is in a bath or pool that is a bit cool his hand will go more purple, whereas it is usually a pinky-red color, almost like a sunburn. We'll also see this purple hue if we hold him under the arms too tightly or for too long, or if he is leaning on his right arm or armpit.

Developmentally, we couldn't have asked for a baby with a better personality! Caden's got so many little quirks and funny things he does that he keeps us laughing and smiling most of the time. His whole face lights up when he smiles, which he does often. He has started to laugh and giggle, and he's always babbling away in his own little language. He puts on a coy little face, or raises his eyebrows inquisitively, and he always seems to be flirting-babies or grown-ups, he doesn't discriminate :)
He can now roll over onto his stomach or back, and he can prop himself up on his forearms when he's on his tummy. He doesn't sit up unassisted yet, and I think this might take a while because he's so heavy! He looks at us when we say his name (most of the time) and he follows us with his gaze and reaches for things. Overall he's reaching all his milestones, with many more on the way:).
Caden and I have been hitting as many of the mom/baby groups as we can. We're regulars at Mother Goose (a sing along and discussion group for parents and babies), and we try to go to the drop ins and groups at the local early years center. Through these groups we met Danielle and baby Elly, who invited us to meet up with a fabulous group of local moms and babes. It's with these ladies (and gents) that we've gone swimming a few times, and met up for lunch dates on a weekly basis. It's been a great way to get out of the house and meet some new friends for both myself and Caden.

So now you're caught up on the bulk of what's happened over the last 6 months, but let me tell you, the day-to-day stuff is so much better than I can ever describe here! I guess now I can start blogging about what's happening in the here and now, instead of summarizing a life so far...

Begin at the beginning...

We welcomed Mr. Caden John Reffell Daniels on September 29, 2009, at 2:46 pm. He was 2 weeks early, but still weighed in at a hefty 8lbs 5oz. Also notable at his birth (by c-section I might add) was that a large part of his upper body was covered in a purple-red birthmark-including his back, chest, right neck and entire right arm. His right arm/hand was also somewhat larger and more swollen than the left: something we were not aware of prior to the birth because the ultrasounds didn't pick it up. We were obviously pretty shocked and concerned, and the pediatrician-on-call was paged to the operating room. After Caden was checked out by the doctor and our midwife, Dave (my husband) was able to take him to the recovery room where family and friends were waiting to greet him, while I stayed behind to get cleaned up-a very weird process when you are frozen from the chest down (I recall thinking "ew, who's floppy leg is the nurse moving around and cleaning"...it was mine.). This 15 minutes or so were also very frustrating as I had to make small talk with the nurses, all the while thinking and panicking about my new baby who obviously had something different about him. I guess when I think about it the nurses were probably the ones trying to keep me distracted with small talk because it was apparent that they too were concerned.

When I finally got to the recovery room I got to hold Caden for the first time, and I was instantly in love...his little pout, how he was quietly looking around and scoping out the room (or likely just blinded by the lights :)), and the way he just knew that he was hungry and he was gonna try and get some food dammit!! The rest of those first few hours is a bit of a blur, but at some point the pediatrician came and told us he'd be making a referral to Sick Kids dermatology for the birth mark/swelling...he also let us know that Caden was otherwise healthy, and gave us some information on what he guessed was the concern. He felt that given the symptoms, Caden likely has "Klippel Trenaunay Syndrome" or KTS for short. This condition however would have to be diagnosed after some investigation at Sick Kids, including an MRI. He assured us that this follow up was not urgent as it is not considered life threatening, but that he would begin the referral process right away.I will mention here that this pediatrician had a terrible bedside manner, and definitely made things more stressful in the operating room with his impatient/sarcastic answers to our rightfully worried questions, but we never have to deal with him again, so that's just water under the bridge...

Looking back on it, I think we were really able to push aside our worries about Caden's condition in those first few days in the hospital, and instead focus on what an amazing little guy he was-going through the motions familiar to any new parent. Because of the c-section, I was essentially useless-only good for one thing of course-food production! Dave was amazing in those first days (oh ya, and still is) changing every diaper, getting up every time Caden or I needed something, sleeping on chairs for 4 nights in a row, advocating for me as I had my meltdowns due to insufficient pain meds...

Oooooh, which brings me to my little rant: As a nurse I am familiar with hospitals, operations, pain, medications blah, blah, blah. I couldn't believe how much one of my nurses made me feel like a drug seeker because I was asking for stronger pain medication after having ABDOMINAL SURGERY...I've seen patients on self-controlled pain pumps for what I would imagine to be a similar amount of pain, and all I get for the first day post-op is codeine and an extra strength tylenol!!! And to top it all off, the nurse gave me a half dose of the codeine to start me off and "see how it worked"-it didn't-so when I asked for more I was told that I can only have that medication every four hours. Queue the meltdown...

Oh, and another thing, since I'm a nurse I see the value in letting nursing students help in my care, but that doesn't mean I don't mind having a catheter put in the wrong hole...

Anyway, I've pretty much recovered from the delivery, and now I'm almost 6 months into motherhood, and I love it. So much has happened in the past few months, and I feel like Caden is growing so fast-sometimes I look at him and he seems like such a little boy now, which makes me both happy and sad at the same time :) I just want to take him all in and not miss a thing and I feel it speeding by, before I know it I'll be finishing my maternity leave...

I guess that'll be it for tonight, I'm missing out on precious sleep as the baby has been asleep for over an hour. In my next entry I hope to catch you up on where we're at as far as the Sick Kids stuff, and some of the awesome milestones Caden's had. But one last thing before I go...today is St. Patrick's Day, and it is also the 5 year anniversary of my Dad's passing. I can't help but think of what life would be like if he were still here, especially to see his first grandson. I think he would be in love with him, and I think Caden would melt his heart every day by flashing him one of his gorgeous full-face smiles...