Baby --> Boy, 18 months and counting...

Where did my baby boy go?  Dave and I ask ourselves this question daily-Caden has morphed into this little toddler-man and we don't know where the time went.

He will be 18 months old tomorrow, and he just seems to get more awesome as time goes by.  Now he's chatting up a storm, and most of the time we know what he's trying to communicate either by his saying the words, signing, or through his actions.  Speaking of words, I'm going to write down all of the ones he currently says, because I want to remember where he is at:

-moo, woof, oink, quack, baa, meow, cluck, roar, cocka (as in cock-a-doodle-doo)
-dog, cat, elephant (kind of), monkey
-ball, toys, car, bag, boots, bubbles, bath, ring, block, socks, shoes, coat
-mamma, dadda, nana, Olivia (the pig), Dora, Elmo, Cookie, Ernie, Grover, (names of kids/teachers at daycare)
-juice, toast, eggs, rice, fish, banana (nana), milk, cookie
-more, all done, yes, no, uh-oh, up, hi, bye, walk
There's probably a few more that I can't think of right now...but so far so good!

We have found out that Caden is a bit behind in regards to gross motor development such as walking independently and general leg strength in climbing etc., so we'll have an Occupational Therapist come to our house to work with Caden and give us some ideas for exercises and how to help his strength.  On the other hand his fine motor skills are great, and he's ahead in his Communication skills :) my little genius...

Caden's "gut" issues are still hanging on, he continues to have a bloated belly and non-solid poops pretty much every day.  Add to the mix the fact that he keeps getting every illness going around his daycare, and essentially diarrhea is the norm.  He was seen about 4 weeks ago by the pediatrician, who ordered a bunch of bloodwork, including screening for Celiac's due to the fact that he hasn't gained much weight over the past few months, and his big belly is out of proportion to his skinny little legs :(  The bloodwork came back negative for the Celiac's, and most of his other results were fine (his albumin was slightly low).  She did add on another AFP test (to check the liver) and it has gone right down-which is great!  The pediatrician agrees that we need to continue to investigate the big-belly-diarrhea situation, so she has made a referral for Caden to Sick Kid's GI specialists, so hopefully that happens soon and we can at least take action and help the poor guy...

I'll be ecstatic when we start to resolve some of this stuff-it's so stressful when things just keep piling on and everything is in limbo.  I also hate to see Caden less than his joyful/playful self, and when his tummy is bothering him or uncomfortable he can understandably get a bit cranky-who can blame the boy!  I know there are many things we can't control in regards to his medical issues, but if there is something I can do (whether it be diet changes etc.) to help the discomfort and ease the belly bloating, sign me up!    

Overall our boy is incredibly adorable and has grown into this amazing little person who we can play, learn, cuddle and communicate with.  I don't know when or how this all happened, but I am so glad I get to tag along and witness his growth and all the changes that come along with it.

Love you Bubba, Happy 18 months!!!
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

and another thing...

Just a quick post before I forget to document some important things...
I've finally stopped breastfeeding Caden, it happened so gradually that it wasn't a big deal at all when it finally happened.  I had been just feeding him at night before bed for the past while, but he has become efficient with the bottle (finally!), so there were a couple of nights where Dave or myself  put him to bed with a bottle, and from then on that's all we've been using.  No complaints, no tantrums, just a smooth transition that was completed about 2 weeks ago.  I do miss it a bit, but it was time :)

Also, we were at the doctor 5 days ago to follow up on Caden's chicken pox, and his weight is now 27.5 lbs.  I am happy with this weight, but at the same time I realize that he has only gained about 2.5 lbs in the past 9 months (likely due to at least 3 episodes of diarrheal illness with weight loss in that time).  We are definitely going to get his large belly looked at, especially since he never has solid stools.  Time to visit the pediatrician again!

On a final note, we have had a very sad past few days.  A friend was admitted to hospital in her 19th week of pregnancy with some symptoms of pre-term labor.  She and her family fought through at least 5 days with strength and determination not often seen, however yesterday little Emmett John came into the world just too soon.  He made such a large impact in such a short time, he will be greatly missed.  Our deepest condolences to Danielle, Jeff and Elly xoxoxo.

February update :)

Well, my prediction from the last entry was wrong-Caden isn't walking completely on his own yet, but he's right on the brink.  That's not to say he hasn't taken steps, he has become great at standing in place unsupported, and taking several steps, but then he will collapse into your arms or whatever happens to be in front of him.  So essentially we still have to walk with him, but tonight especially he seems to be making a breakthrough and looks far more stable on his own.  It's very cute-every time he realizes he's doing it on his own, he has a huge toothy grin on his face and starts giggling :)

In other news, we had a follow up liver ultrasound and specialist appointment at Sick Kids this past friday, and we were told that Caden's "non-specific" liver lesion has not grown in size and so it doesn't need to be monitored as frequently, just in another year or so.  They think that it is some sort of small grouping of malformed blood vessels.  The liver specialist also said that the AFP bloodtest that Caden was to have repeated to ensure the levels were continuing to decline, was not necessary to repeat based on the fact that the lesion has not grown.  However, now I wish I'd asked if we could just do it anyway because I want the proof that the levels are actually still going down...I know, I'm neurotic...

Daycare continues to be a cesspool of infectious diseases, since the new year Caden has had Norwalk, Croup, Pinkeye, and now what I can only assume to be some sort of minor chicken pox (only minor because he got the vaccine about a month ago).  Thursday evening I noticed a couple of "pimple" type bumps randomly on his body, and there were a couple more Friday, but no new ones since then.  They seem to be healing now, but for the past few days Caden has been cranky, coughing, tired, crying at toys for no reason, and has swollen lymph nodes in his groin.  His arm has also been extra swollen over the past week or so, I assume it's all related to his immune system trying to fight of something(s).

In spite of it all he remains such a great spirited little boy.  He was so good while we were at Sick Kids, even though he wasn't feeling well, and there was a mix up with our appointment, so a 10:45 appointment turned into a 2:45 "we'll fit you in" (the error was on their part, not ours).  He missed his nap, and was a bit cranky a few times, but overall very good.

As far as language development goes, he's doing very well (in my humble opinion).  He's making more and more animal noises on request.  He also seems to understand a lot more of what we say, and is almost conversational, answering with simple words and gestures.  He can point out specific objects in books when asked, and he loves watching some Elmo/Sesame Street songs on the iPad and clapping at the end of the song (without prompting).  He's also becoming more of an independent eater; often getting frustrated unless he is holding the spoon :)

Every morning, all I can hear on the monitor is him softly chatting to himself, and then raising his voice with excitement saying "Mumma! Dadda! Toooyyyyyysss!"
It never gets old. 

 Caden and his friend Elly at the indoor playground :)

New Year

I know, once again I've been slacking on the updates, and believe me, a lot has happened since the last post over a month and a half ago, but I can't possibly get to everything, so I'll fill you in on what I can and try not to ramble too much.

Caden is now on the verge of walking; the closest he's gotten is taking one or two shaky steps to me or Dave, upon which he realizes he's not holding on to anything and promptly sits down to crawl the rest of the way.  Oh ya, he has now also perfected the crawl-he had been doing the military crawl up until about 1-2 months ago, but now he is fully on his hands and knees.  His ultimate favorite form of travel at this point has to be any sort of push toy-his walker, train, or any sort of chair that moves across the floor smoothly will be used to support his walking.  I predict he will be walking on his own in the next 2-3 weeks...then we can find out exactly what else needs to be baby-proofed ;)

In my last post I didn't even get around to mentioning perhaps the biggest change, Caden started daycare, and I am back to work.  I was very anxious about daycare at the outset, and I was dealing with some major guilt, but now that he's been going for a good 2.5 months, I can say that overall it has been a good experience.  The first 1-2 weeks had Caden crying when I would drop him off, but now when we arrive I ask him if he's "gonna go play with the kids?" to which I get the same response every day, an emphatic "Ya!" followed by jumping up and down in my arms and pointing.  He loves the staff, and it helps that they also love him.  They take good care of him, and are attentive regarding his KTS, keeping an eye out for any changes that we need to be informed about.  Caden also loves the food there, to the point that they asked me if he was eating at home because he was eating more than adult portions at lunch :)  I won't complain-any eating is better than the refusal to eat that we were dealing with a few months ago!  The drinking is coming along too-we've been giving him homo milk since he turned 1, and he regularly will drink a 10 oz bottle as I'm changing him in the morning, as well as another 1 or 2 bottles throughout the day...now I just need to wean him from the night time boob feeds!  I will mention that the one (major) annoying thing about daycare is the number of times Caden's been sick over the past two months.  He literally has not had a full week of clear nasal passages or solid poops.  Currently I'm on my second day home with him due to an ear infection and chest cold that interestingly started out with projectile vomiting at the daycare on Monday afternoon (it's Wednesday today).  Here's hoping the antibiotics have kicked in by tomorrow.  I know that this sickness thing is common for kids at daycare, but it just really, really sucks.

Since November Caden has had a new compression garment which is almost like a "Spanx" shirt and glove.  It is nude colored compression material that is essentially a tight fitting top with a zipper up the back, one short sleeve and one long (for the affected arm), and also a gauntlet-type glove that overlaps the sleeve a bit and has a partial thumb cover but no fingers, just because we wanted him to have no restrictions to the fingers.  It has been explained to me that the garment only maintains the size of the arm, whereas wrapping the arm will help to decrease the size by helping to push fluid up and out.  However, wrapping is not conducive to daycare, so I try and massage Caden's arm as best as I can in the morning (not an easy task with a squirmy little rascal) and put on the garment which they usually take off at the daycare before the afternoon nap.  Overall I would say that his arm is not the smallest it's been, and there have been recent days when it has looked quite puffy, but I think it also has to do with the fact that he's been sick so often and his whole immune system is just out of whack.  Hopefully we can find some sort of system that better controls the lymphadema on a daily basis.

Another big thing that's been building more over the past few weeks is Caden's vocabulary.  Up until recently he would babble and every now and then pull out a "mumma-mumma" or "dadda/daddy" or an "uh-oh", but now he says quite a few words (or at least his version of the word) such as "toys, car, ya, okay, quack quack, woof-woof, go-go-go" as well as having signs for "more", "milk", "all gone/done", and "fish".  He is also great at communicating the word "no" by shaking his head or turning his head away and screeching when he doesn't want something.  Last week we went to an appointment at Erin Oak with a Speech and Language Pathologist (we were referred to them months ago due to Caden's eating issues and when the appointment came of course the eating issues are resolved!) who assessed his communication and language development so far and says he's doing great-right on track, if not slightly ahead of his age for vocabulary etc., and also no developmental issues related to communication.  Although I didn't expect them to identify any problems it was still great to see that he's doing all the right things :).

Apart from that, Caden continues to be a happy little boy with an awesome personality, and dashing good looks (insert Dave saying "just like his father" here) who we couldn't love any more :)
Enjoy some pics!

First Santa Pic:

First School Pic:

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 :)