StephanieBeth
08-13-2009, 08:58 AM
Hello,
Here is a brief overview of our son's journey through craniosynostosis.
It all started because of breastfeeding. Levi wasn't gaining weight very well and we started supplementing with formula. I was disappointed and I felt that something wasn't right. I got an appt at the Breastfeeding Clinic at the Jewish General Hospital in Montreal.
We got our first appt when Levi was 8 weeks old. Lydia (IBLC) checked him out and quickly saw that he was tongue tied. It was corrected that same day. Breastfeeding has been super since then.
Lydia also told me that Levi's forehead needs to be investigated. She said that at 8 weeks it should be rounder. She said I should mention it to the pediatrician.
The following week, we saw the pediatrician for his 2 month vaccinations. I told him about his forehead and he examined him. He gave us a referal to a neurosurgeon (Dr. Farmer) and told me that at worst case it would require helmet therapy.
The requisition for Dr. Farmer said 'plagiocephaly??' I quickly began my research. I realized that it was more severe than that and it was trigonocephaly.
The night before our appt with Dr. Farmer (NS), I wrote out on a note..."rule out craniosynostosis." I then went into Levi's room and saw his head shape (top down view). I didn't sleep that night.
On June 16th 2009, Dr. Farmer confirmed that I had done good research, it is craniosynostosis (trigonocephaly) and we would need to operate. He explained how he does the operation with Dr. Mirko Gilardino (Plastic Surgeon).
Since the diagnosis, we have met with Dr. Gilardino. I believe he will be excellent. We are in great hands!
We also had an appt in opthamology. Levi's optic nerves looked great. We have a follow up appt because they thought he might be a bit farsighted.
Our next appts will be on Sept 28, 09. We will have blood compatability tests, photo shoot, MRI and CT scan. (Big Day!)
Well, that's the story so far... I've watched the surgery online... I know what he's in for and it kills me... but I know we'll get through it.
The kids on this site prove that the results are positive, I just can't wait for it to be over with! Surgery will likely be in Nov 09.
I'll update again after his appts in Sept.
Here is a brief overview of our son's journey through craniosynostosis.
It all started because of breastfeeding. Levi wasn't gaining weight very well and we started supplementing with formula. I was disappointed and I felt that something wasn't right. I got an appt at the Breastfeeding Clinic at the Jewish General Hospital in Montreal.
We got our first appt when Levi was 8 weeks old. Lydia (IBLC) checked him out and quickly saw that he was tongue tied. It was corrected that same day. Breastfeeding has been super since then.
Lydia also told me that Levi's forehead needs to be investigated. She said that at 8 weeks it should be rounder. She said I should mention it to the pediatrician.
The following week, we saw the pediatrician for his 2 month vaccinations. I told him about his forehead and he examined him. He gave us a referal to a neurosurgeon (Dr. Farmer) and told me that at worst case it would require helmet therapy.
The requisition for Dr. Farmer said 'plagiocephaly??' I quickly began my research. I realized that it was more severe than that and it was trigonocephaly.
The night before our appt with Dr. Farmer (NS), I wrote out on a note..."rule out craniosynostosis." I then went into Levi's room and saw his head shape (top down view). I didn't sleep that night.
On June 16th 2009, Dr. Farmer confirmed that I had done good research, it is craniosynostosis (trigonocephaly) and we would need to operate. He explained how he does the operation with Dr. Mirko Gilardino (Plastic Surgeon).
Since the diagnosis, we have met with Dr. Gilardino. I believe he will be excellent. We are in great hands!
We also had an appt in opthamology. Levi's optic nerves looked great. We have a follow up appt because they thought he might be a bit farsighted.
Our next appts will be on Sept 28, 09. We will have blood compatability tests, photo shoot, MRI and CT scan. (Big Day!)
Well, that's the story so far... I've watched the surgery online... I know what he's in for and it kills me... but I know we'll get through it.
The kids on this site prove that the results are positive, I just can't wait for it to be over with! Surgery will likely be in Nov 09.
I'll update again after his appts in Sept.