How cute are these pics?
May 30th, 2012
Here are a few pics of Gabriella and Nicolas from this past weekend I couldn’t resist posting!
Love, Carole
Mr. Nick just chillen…
May 22nd 2012
Here is a pic of my angel boy this past weekend… He was not feeling well (definitely stressed his mommy out like crazy!) We took him to the children’s hospital on Tuesday May 15th (finally got an appt to get his genetic testing done which I will discuss in an another post!) and I think he may have caught a major stomach bug there… No appetite and his stomach was such a mess! He was not his usual happy and smiley self, and it broke my heart seeing him like this.
Happy to say he is back to normal, jumping up and down and moving all over the place in his funny way of crawling (which I will be posting a video very soon, it’s way too cute!)
He was especially in a good mood today, laughing out loud at all my funny faces and dancing non stop to his favourite song (the wanted’s “I’m glad you came”)… almost as if to reassure his mommy that he was ok… and back to being his perfect self.
Love, Carole
May 5, 2012
Gabriella’s 1st real haircut!
I finally had the courage to cut Gabriella’s gorgeous long hair!
It was getting really unmanageable…it would take us a good 30 min to brush and detangle her hair and I couldn’t take seeing my daughter in tears everytime so I knew that it was finally time… So I took her to mini mod, a kids hair salon on April 28th, to cut a good 4-5 inches off. Even the hairdresser told me she had never seen a little girl’s hair like this in her entire career! She convinced me to add a lot layers so it would be easier to brush…
Here are before and after shots! I have to say I can’t believe how much I love her new hair cut! Although she lost her blond curly tips, it’s become so easy to manage! And she looks even more beautiful (if that’s even possible!).
Everyone keeps saying she looks older, as if she was 5… and I won’t lie, that sort of freaks me out! I can’t believe that my baby girl doesn’t look like a baby anymore!
She’s growing up to be such a loving and beautiful person, inside and out, and I couldn’t be more proud…
Love, Carole
Nicolas’ vision acuity
April 19th, 2012
I can’t believe that I let this much time pass by since the last time I wrote!
Well after finding out the amazing news of Nicolas’ vision, I felt the need to take a break of “thinking and worrying too much” and just wanted to finally really enjoy my little boy… And we definitely did! George and I felt like somebody took the “albinism” away! Although we knew his vision wouldn’t be perfect, we were so happy that it would be better than we ever anticipated!
We then had an appointment with the Montreal Association of the Blind on March 5th to meet with an occupational therapist and an optometrist. They wanted to meet Nicolas when he was 6 months old in order to assess his functional vision… I was really nervous about it… Even though our ped opthamologist told us that his vision was going to be good, I was still anxious about the test results. They were going to check his vision by a test called “teller acuity cards”. One side of the card would be blank and the other would consist of grey and white stripes. The dr. would then judge Nicolas’ reaction to a series of cards showing stripes of different widths, getting smaller and paler as the test progressed. I was prepared to hear a bad score, as I knew that most babies with albinism test low at this age (the score could show 20/500 but as they get a little older it could be 20/160 for example) Well… I couldn’t believe how well he did (especially considering that he was majorly cranky as his 4th tooth was getting ready to come out!). He scored between 20/50 and 20/90! The dr. said that he tested the same way as any other 6 month old would have! Basically, this is what his vision will be or most likely even better (their vision tends to get better up until age 6). They also wanted to test his tracking, so they put a black blanket over a table, and started to roll different sizes of white shaped balls… the first one was as big as a grapefruit and as the test moved along, the ball kept getting smaller and smaller… and Nicolas was able to track the ball when it was as small as the head of an ant!
So the MAB confirmed that his vision will be really good, and that they wanted to see him back in 6 months to check his vision progression, and that if he scores any higher, that he might not need their services! Wow! She then said that it would be interesting to know what kind of albinism he has because although he has white hair, he seems to have the mildest form of albinism she has seen!
As happy as this makes me, I still have my guards up… My son still has albinism and definitely has some form of visual impairment… There are times where I try to get his attention form across the room and it takes him time to find my voice. Could be the glare from the sun, but it still is enough of to remind me of his impairment. And even though he is really not that photophobic, he is still more sensitive to sun than the rest of us, needing sunglasses even on cloudy days…
But I can’t help to feel so grateful, and incredibly blessed… because most of the time, it feels like he sees perfectly fine.. And I am sure he will continue to amaze us everyday…
Love, Carole
Update- Big news about Nicolas’ vision!
February 22, 2012
I know it’s been a while… but what i’m about to share was definitely worth the wait.
On monday Feb 20th, we had Nicolas’ 6 month eye doctor appointment with his paediatric ophthalmologist. Needless to say, I was a complete wreck the night before. I couldn’t sleep. The last time we were there was when we first found out about Nicolas’ diagnoses. I’ll never forget that day… it was August 23d, and was honestly the worst day of our lives. The doctor wanted to see him again at 6 months so he can give us a better idea of what his vision will be like.
Well I stayed up till 2am researching anything I could possibly find about “what to expect” and preparing myself to whatever he has to say. I kept reading about how doctors usually underestimate what children with albinism can actually see, and that their vision is usually better than what they predict… so naturally I was getting ready to hear the worse. I was dreading it. Going back to his office gave me more anxiety than I ever imagined. For the last 6 months, Nicolas seemed perfect to me. I did not think about his “albinism” all the time… His vision seemed to be pretty good if you asked me… He could see me across the room and even smiled at my facial expressions from a distance. if it wasn’t for his white hair, I would forget he even had this condition. So going to the doctors again was a reminder of it, and I didn’t want to hear something that would burst my bubble. George on the other hand was being really positive, reassuring me and telling me that he had a good feeling about it… and I prayed he was right.
So the moment finally came, and we were on our way to the doctor’s office. George made sure not to park on the same side of the road as last time, hoping that it would bring us better news…
The doctor asked me to put Nicolas on my lap so he can take a look at his eyes. He had a toy in one hand, and a pen light in the other. As he looked carefully into Nicolas’ eyes, moving the toy back and forth to see if Nick can track it (which he did!), he started to look confused and said; “Well…this is unusual…” My heart dropped. He then smiled and looked at me and said “He doesn’t have any nystagmus” (that’s when the eyes move back and forth, which is almost always there with albinism). He’s also not very photophobic (sensitive to light)… The doctor then continued to explain to us how rare it is to not have any nystagmus and how positive this is for his vision (especially that Nicolas seems to have OCA1 which is supposed to be the most severe albinism due to the fact that he was born with white hair). I always assumed that the fact that he does not have any nystagmus will indeed help his vision but didn’t realize just how much. The doctor continued to have a confused look on his face and said “this is really amazing… he is not a typical albino! He’s going to have good vision!” I couldn’t believe my ears! I mean I always knew in my heart that his vision was good but not to this extent! He also mentioned that the reason he doesn’t seem very sensitive to the light was because he has pigment in his irises (which explains why his eyes are dark blue) and that its helping filter some of the light! He then proceeded to add some drops in his eyes to dilate the pupils so he can take a better look at the back of the eye (the retina). So we waited 30 min before we re-entered his office, and when he looked into Nick’s eyes again, he gave us a smile and said everything seems great! The retina seems to have developed a bit of pigment! That’s what is helping him see better! I couldn’t believe my ears… I made him repeat that 3 times… there’s a little bit of pigment in his retina. Wow. So scientifically, does this mean that since his body is producing a little bit of pigment, he may have OCA1b (instead of OCA1a)? Does this mean that his body and hair might also eventually develop some colour? He said “yes, maybe… but for now, whatever pigment he is producing went straight to his eyes!” Although his vision will not be as good as ours, he will most likely be at the good end of the spectrum (if not better!) for people with albinism. That is all we could have ever prayed for…
Finally, as we were leaving, George looked at the doctor and asked; “So you mean to tell me that the last time we were here, you gave us the worst news of our lives, and that 6 months later, this is the best case scenario we could have ever asked for?” The doctor looked at both of us and said ” Oh yes… This is defying everything I know about albinism!” What a statement! We were speechless.
It really is a miracle. Nicolas is rare within his rarity. He never ceases to amaze us… He is even more special and unique than we ever thought. We spent the rest of our day on such a high, telling the amazing news to all of our families… Our smiles did not leave our faces all day. Thank you God for listening to our prayers, and for this miracle… we are truly blessed.
Love, Carole
Sleepless nights…
February 3, 2012
Yes I know I’ve been slacking off with my blog this week, but I really do have a good excuse this time, really. I’m sure all new moms out there can relate with me on this one…
Gabriella has been fighting a really bad flu since last Sunday. She’s had major fever everyday and was complaining about her throat and tummy. It was really stressful, she was constantly shivering (her fever wasn’t really going down 40°C) and was not her normal happy and energetic self… You can tell that something was wrong just by the fact that she wouldn’t leave my side. It’s incredible how powerful and comforting a mother’s love is during this time… So after a long week of worries, 2 doctor visits, and 1 lab test (for strep throat) she’s finally in the clear and back to herself!
And as for Mr. Nicolas, he suddenly started a new habit of not wanting to sleep! He was pulling almost 10-11 hours of non-interrupted sleep, but this week, he could barely make it to 2 hours before waking up crying… or talking up a storm! People keep saying “oh he’s teething” or “it’s a growth spurt”, well whatever it is, I hope he gets back to his normal routine cause it’s driving me nuts! I feel more sleep deprived now than I did when he was a newborn! Not to mention that when he was finally asleep, Gaby kept waking us up with fever! Let’s just say I wasn’t the best person to be around with this week…
On a positive note, Nicolas surprised us yesterday by rolling over his tummy for the first time! I knew it was coming soon because every time I’d check up on him, he was always trying to lean on his side (perhaps another reason why he wasn’t sleeping?!) Though he still doesn’t know how to roll back on his back (and whines every time because of it!) he didn’t stop all day! It was the cutest thing…
Love, Carole
[Flash 10 is required to watch video]
January 25, 2011
I couldn’t resist posting this… Daddy came home with a bag of hats and gloves, and this is how Gabriella reacted! Notice her smirk in the beginning, she knows I’m taping her so she made sure to give us a good show! (It’s also funny how in most of my recent home videos, you can always count on hearing the sound of Nicolas on his jumper in the background…)
Love, Carole
Date night
January 24, 2011
Ever had one of those weeks where everything seemed overwhelming and exhausting? It felt like nothing was going right for us last week … George was extremely stressed at work, and my postpartum hormones were at their peak (thanks to my period’s first appearance in over 1 year!). We barely had time to look at each other, let alone talk… So when Friday night came along, we decided we needed to go out for a nice dinner and enjoy some one on one time together… and wow did it feel good! We had such an amazing time! We went to a beautiful restaurant called Chasse et Peche in the Old-Port…and it was delicious. We drank, laughed, and actually “talked” to each other for the first time all week! Crazy how easy it is to get distracted with everyday life, leaving us feeling disconnected at times… and how powerful a date night can be.
We were having so much fun that after our dinner, we decided to go to the Mont-Royal mountain to continue our date! The last time we were there, I remember looking over our beautiful city, and fantasizing about our future together, what it would be like to be married, and have kids… and what they would be like….
And well here we are, almost 11 years later. This time, when we looked at that same downtown Montreal view, we couldn’t help to feel thankful and blessed, as we could not have asked for a better life together.
Love, Carole
