Request for revision

 Well time has come my not so little boy is asking for the revision that Dr. Phillips said he could do when and if Lucas wanted it.

A little update over the last many years.  Lucas is now 13 years old, 12 years post-op this past September.  They also started grade 8 in September.   

The both of them have played hockey every winter over the last few years and are in their first year of U15 (bantams).  He did end up with a minor concussion a few years ago from a collision into the boards, but has been good since.  A couple sleepless nights then.  Playing local or house league hockey the don't have the same risk as body contact or rep hockey but still a risk.

He also is navigating the world of braces!!  When getting assessments done, the team noticed that he had craniosynostosis and put us in contact with the sick kids, Holland bloorview, orthodontics program that is covering most of his braces.  This momma is very happy about that.  His brother will be needing some but he's not quite ready for them just yet.

Aside from the normalcy of navigating life, new house, couple of tropical vacations, and new pets, nothing very significant happened.

Now last night he sends me a text, just before my shift is over, saying that he thinks he wants to have the procedure done to correct the pinching at his temples.  Dr. Phillips had told us on his last visit, back in 2015,  that if he ever chose to have his temples filled and scar revised it has to be his choice and that it could be done very easily in a minor procedure.

Now where I  want him making his own decisions I feel that this decision could be happening because of some bullying.  Lucas, he assures me that this is not the case but I can still suspect.  He also tells me thay he's been getting lots of questions about it lately from friends and kids in his school about why his temples indent the way they do.  He tells me that he explains to them what happened and that the other kids are then satisfied and move on.  So I feel thay this could be the catalyst to this whole thing.

I placed a call to the craniofacial program at sick kids hospital this morning and hope to hear back from them soon to book a consultation appointment with Dr Phillips for the near future.  

I just hope that he is satisfied with whatever he chooses for this.

Six years post-op

Well can you believe it.  I sure can't.  Six years has gone by in a blink of an eye.  I just re-read all of my posts from the time things were happening and am currently sitting here with red teary eyes trying to write.  Well a lot has happened in the past few years.  Boys have been In school and now have just started grade 2.  They have also played hockey these past couple years and Lucas says to me this morning, "mommy hockey is my favorite" we haven't had any more visits to sick kids with Lucas and we are planning a trip to Cuba this November, hoping Irma didn't put a big wrench in our plans.  

Well I just wanted to touch base and let everyone know that there is an end to this process and I'll update as needed and if anything changes.  I just need a quick shout out saying 6 years had flown by so fast.  I hope everyone that reads my blog can know that there is a light at the end of the tunnel.

No More Visits

Well this past April Lucas and I flew down to Toronto, by porter airlines from Sudbury to the down town airport.  Taxi ride to and from sick kids hospital and my Little guy was amazed, a little nervous, but still enjoyed it. 

Now when at the hospital we had some time to kill but either way, we made the best of it as we went to breakfast first. 

We only went this year for opthamology as last spring we were given the, we only need to see you if you think it is needed, or if you are in the area and want to stop by.  You are being put on a PRN basis!!  best news possible.  so when he was seen by opthamology we were given the same news, we don't need to see him anymore unless you need us to!!

The only glitch in the day was either they didn't call us or we missed his name being called and sat there for a couple hours longer.  And that made me glad that I took the later flight home. 

It also didn't help that it was raining a bit so it wasn't so nice to walk around, and the flight was a bit rough but we made it!!  home safe and sound.

so I will only further update here now if something happens and I need to vent!!  Now for Nicholas that is a different story and if you need to know more there look to his journey blog to find out!!

Follow-up in May

Well it's that time of year again and we will be off to Toronto around mid May.  We were to follow up in April but I requested to have his appointment in May this year as we had lots of snow and did not know what April would bring, at that time.  Now being April 22nd and having had at least 2 significant snowfalls this month alone makes my decision to delay a really good one!! 

Lucas is not having any difficulties what-so-ever and he seems to be learning at an acceptable rate.  Both boys are registered to start in junior kindergarten in September and they seem to be excited about that.

I'm actually excited to be going to Toronto this time around.  We are planning on either visiting the zoo again or go to the aquarium, this decision will likely be made the morning of as the zoo will depend on the weather.

As I'm writing this I'm thinking as to how just 3 years ago I was dreading every trip south, not wanting to have my baby go through what he has now, and just being so unsure about myself and our decisions regarding his surgery and how people would take him and us knowing what he has had done.  And I think the main reason I'm thinking about this is because I'm thinking about a friend of mine, from our little northern Ontario town, who also has a son who is facing the cranial vault reconstructive surgery (CVR).

Her son has a different type of craino and his is sagittal craniosynostosis so the suture line on the top of his head has been fused and his head is growing oblong.  As much as I am trying to comfort her, and it is not an easy task as I keep thinking back to when I was there myself in her shoes.  Indecision and fear is what you woke up to, felt all day long and cried yourself to sleep at night with (even now thinking about this my eyes are welling up with tears.)  My only hope for her is that she leans on those willing to help. 

I don't know how much I can help her to feel at ease other then to tell her how Lucas did with his surgery as it is a different line all together but the basics of the surgery is the same.  When we are in Toronto for Lucas' follow-up we will be in town at the same time that this little boy will be having his surgery and I hope to get up to the surgical waiting room the day of his surgery to see his parents and then the day after to help provide some support to them to know what is in their future days post-op.  All the best to you little man!!  You and your family are in my thoughts and prayers, and because I have shared about your journey with my family you will be in their prayers as well.  Mom please watch over this little guy, as you did in life with Lucas!!  (sorry but now tears are actually falling down my cheek.)

Well good night, (or good day depending on when you are reading this) and god bless!! 

on to yearly visits

Well I'm a little behind the times and I'll tell you now!!

We were to sick kids in April to see Dr. Phillips and Lucas is doing great, he is at yearly visits with them now and I couldn't be happier.

He also seen Dr. Bunsic, opthamology, and he has a 2 year window for that so needless to say I'm happy.  but the craziest thing we have an appointment for Lucas to see them again April 8, 2015.


I was thrilled to think that we were for the most part done with that place.  not that I don't like it but I can handle yearly visits but here we are planning on going again this summer for Nicholas!!  Oh well, we will get through this like everything else!!

Toronto in October

We traveled to Toronto and to sick kids again in October, 2 weeks before halloween, we went to see the opthamologist to just observe Lucas' eyes again.

We waited a bit but in the end didn't have many difficulties, boys were a little restless.  We wanted to go to the zoo but the day we wanted to go it was raining so we went shopping instead, I was able to get a couple of christmas gifts too, bonus!!!  and we got to go to the bass pro shop, my dad's favorite destination!!

At the hospital, Lucas had to have eye drops this time so with him screaming and hollering we held him down to get the drops in his eyes, and then he was happy!!!  Went to find Poppa, the man that Lucas was hollering for the entire time!!  So that when the doctor would see him he was calm!!  After all of that we are good with a year before we see them again, THANK GOD!!  Now lets see if we can get to see both doctors again together next time!!!

One Year Post-op

Wow I can't believe that the time has come to say that my little guy is one year post-op.  I have been thinking about this for some time now and how much my parents had helped me to get the point of surgery, and then the tragic way we were together just 12 days later.

When I think about the actual day of his surgery, all the waiting and restlessness from me and my family, and when we finally saw the surgeon after he was done, he gave us a thumbs up, I think tears of joy were what were falling that day, on all of our cheeks.  and then there was little Nicholas not knowing what was going on but keeping all of our moods higher then if he wasn't there!!

I can remember seeing my dad wiping tears from his eyes and thinking the only time I had ever seen him cry before that was when my grandmother (his mom) passes away!!

My mom's tears were a wonderful thing to see to, more so now because those were the last tears of joy I got to see from her eyes.

When we first saw my little Lucas in the ICU he had tubes and wires (these really didn't bother me I expected it, being a nurse myself) and to see his round head after it was so pointed before, I just wanted to pick him up and cuddle him, but I refrained.  We went back after supper and I picked him up then and the little bugger promptly puked on me, again not totally surprising.  The next time I picked him up was the next morning when he was in his room on the plastics ward.  Actually he wouldn't let me put him down until early afternoon.  Just in time for his post -op CT scan!!

seeing the swelling the next few days and watching him take everything in stride and watching him now, you wouldn't know he had ever gone through any of it. 

I love seeing his smiling face every day, even when he is getting on my nerves!!  But I need to end this now I smell a combo of poo and celery salt, so one had pooed and they both have gotten into my celery salt that I left on the table after seasoning supper, I hope the whole bottle isn't on the floor!!

I'll write again soon!!!!!