The Date Has Been Set!

I received a call from Sick Kids Hospital today. It was Alan George, the coordinator for the Cranio Facial Clinic. He called to tell us that we can have June 21^st as a surgery day if it works for us. He also went on to say that Dr. Dirks, the neurosurgeon we saw was not available and therefore we would need to go ahead with another surgeon. At first I was concerned about this. I was comfortable with Dr. Dirks doing the surgery so I was nervous about what he was going to say next.  But then he told me that the new neurosurgeon taking over Spencer’s case would be Dr. James Drake the Chief of Neurosurgery. I was quite pleased.  Alan asked me if we wanted to meet with him first before setting the date so I then asked, “Do we have to? If he is the chief, I am more than thrilled that he will be performing the surgery and really do not feel the need to meet with him.” I’m very reassured that Spencer will be in good hands with the Chief of Neurosurgery.

When I looked up Dr. James Drake this is what I found. Dr. Drake was born in London, Ontario, and educated at Princeton University (1969-1974), Royal College of Surgeons in Ireland (1974), University of Toronto (1986-1987), and Royal College of Surgeons of Canada (1987). Training included a research fellowship funded by the Medical Research Council of Canada (1986-1987) in Hydrocephalus. Assumed his appointment in the Department of Surgery, Division of Neurosurgery in 1988, and has been on the surgical staff at The Hospital for Sick Children in the Division of Paediatric Neurosurgery since then.

I think these credentials speak for themselves. So now we know, Dr. Philips will be doing the Plastics part of the surgery and Dr. Drake will be doing the Neurosurgery part of the surgery. Knowing that these doctors are both very capable, educated and skilled doctors eases the mind a little about what our baby is going to be going through.

After this part of the conversation ended Alan George (the coordinator) went on to tell me that he had some other bad news. Spencer’s blood is B +. I am A+ and Steve (my husband) is AB+ which means neither of us is a match for Spencer and he will have to receive blood from the Canadian Blood Service. This upset me a great deal. I know that everyone says that the blood service is safe and reliable however I do have my doubts. Unfortunately now we won’t be able to control what he gets, we won’t be able to build up our iron to help him. We have to put our faith in the “system” and pray that every drop he gets is safe and untainted. Alan explained that if he gets either of our blood the “antibodies we have will cause clumping and will do more harm than good” so Canadian Blood Service it is.

We have two more appointments coming now. One is a CT scan which will be some time in May and an Anesthesiology appointment also to happen in May.

Other than all this Spencer is progressing amazingly well. He is such a happy, outgoing, energetic little boy who is going to be crawling any second! Can’t wait for the fun to begin when he doesn’t sit still for a second! 


Spencer at 8 months

Out of the mouth of babes…

I took my older son skating this week for his final lesson and I had a very interesting and shocking experience that I wanted to share with everyone. Usually my husband Steve comes with me but he had a prior engagement so he couldn’t come this time. This made it harder because that meant I had to put Eidan’s skates on and all the other gear as well as watch Spencer at the same time. Spencer was having a fussy afternoon as he is teething so I had to hold him. I got Eidan ready, took him to the door where he goes on the ice, I put Spencer in a cute snowsuit with a hood and proceeded to watch Eidan’s lesson. A little girl came up behind me, she could not have been more than 4 years old, and asked if she could see the baby. So I of course turned Spencer around and the girl talked to him, made him laugh and was really sweet.  But the next thing that came out of her mouth blew me away entirely. She looked up at me and said every so sweetly “why is one of his eyes bigger than the other?” I was dumbfounded. I couldn’t believe that she even noticed. I don’t know if the hood emphasized it or if she was just extremely observant. I did not know how to answer her. All I could think of was that “now the decision is made FOR SURE” surgery is the only option since a four year old picked up on it. Thank goodness he is too young to know or this for sure would have upset him. Luckily I did not have to explain as the little girl’s mother called her as it was time for her skating lesson! I don’t know if I even had an answer to give her. To an adult it’s easy to say he has Cranio Synostosis, explain it, say that it will be fixed and it is cosmetic but what do you say to a 4 year old? All the while I am wondering if my older son Eidan who is also now 4 has ever noticed anything about his brother. He has never said anything so I don’t think he does but you never know what runs through their heads. This also makes me think about how many adults we see and what they must think of Spencer. I find now I am very self conscious for him and I am constantly watching people’s faces as they interact with him. I am also wondering about what people will say or not say when they see the scar that he will have after the surgery.

Eidan and Spencer

Spencer's Opthalmology Appointment

So Spencer had an ophthalmology appointment this past Friday where we got really good news. Sometimes with Cranio Synostosis there can be pressure on the eyes or brain but in Spencer’s case his eyes and optic nerves are totally healthy. There is no pressure and we should have no concerns about his eyes or eyesight. This makes us all ecstatic.


While I was there I had a really interesting encounter. In the waiting room was a little boy sitting on his grandmother’s lap. I knew instantly that he had Saggital Synostosis even with his hat on. It is amazing that just a few months ago I had no idea that anything like this even existed in this world and now I have become so well educated that I can recognize it just by looking. His mother and I got to talking and I found out that he does in fact have Saggital Synostosis but was only recently diagnosed. This was shocking to me because he looked quite old and to me it was quite obvious. She went on to tell me that she didn’t have a pediatrician only a GP and that doctor just kept saying that it was “molding from birth”. He is almost 12 months and as I understand it they usually do the Saggital surgery around 5 or 6 months old. This made me really think about Spencer’s condition and how we are so very lucky that we had such great doctors looking out for him. He will therefore be right on track for all his appointments and surgery.  This mother also made a very interesting comment to me which I took to heart and that was when she got the diagnoses she went online and could find very little about it. I told her that is exactly why I was blogging about it and I gave her the address telling her that I hope it will bring her some comfort and education about this whole ordeal and that she is not alone. She is precisely why I am writing this blog and hoping that it will help bring this condition to the forefront of people’s minds.

Spencer has his next Plastics appointment with Dr. Phillips next Friday. (April 13th) where we will hopefully receive a surgery date.

Spencer at 6 months

Spencer at 7 months