Sweet Jameson is 1 month today! At this point he is also known as Fat Boy (he can continuously eat for 3-4 hours sometimes – no joke, and he won’t spit up at all either), Jimmy-Utah, and Jammy-Jam. I have no idea how much he weighs right now – but I know it’s a lot more than the 7lb 2oz he was 2 weeks ago. We are finally out of Premie clothes and can fit nicely into 0-3 months now 🙂
It’s been a quiet 2 weeks around here since our last Dr appointment. I have networked with quite a few families through CCA (Children’s Craniofacial Association). I posted an introduction on their message board and got a flood of emails from parents with Pfeiffer’s and Apert’s. One 4 year old boy with Pfeiffer’s actually lives about 10 minutes from us too! It has been amazing to hear from these families and learn how vast the symptoms can range from person to person. One child can be born and rushed off to NICU because they’re not breathing and need a trach – and another child with the same condition can be born perfectly fine. One mother wrote to me and said her 19 year old son has Pfeiffer’s and was doing high school algebra in 5th grade and was always happy to help his classmates with their homework!
*A side note: Did you know that Prince (the musician) had a son born with Pfeiffer Syndrome? Yes, I learned this as well. He was born with a severe form and died 2 weeks later after being pulled off of life support 🙁 Prince refuses to talk about it though.*
I bought and read an amazing book – Babyface: A Story of Heart and Bones. It’s a personal story from a mother whose son was born with Apert Syndrome in 1990. It tells the story of her sons first 2 years and the numerous surgeries he went through and how their family coped with it.
After finishing the book I found myself back on the internet looking for more personal stories, trying to find more information. And then I had to just stop. It happened after I had the idea to You Tube instead of Google. At first I was excited and found some great stories, one of my favorites is this little boy Callum (he is so stinking adorable) who has a severe form of Pfeiffer’s. But then I found videos of the LeFort Surgery which happens later in life to pull the midface out, and it got me realizing how rough the road for Jameson might be – not that I didn’t already know that, but it hit me in a different way, I guess because I was watching actual people instead of just reading about it.
So, I stopped. I stopped the Google, I stopped the You Tube. We made a decision the day Jameson was born that we are going to get through this – and we are going to do everything we can to make sure both of our boys grow up happy and healthy through all of this. Googling and You Tubing wasn’t giving me any information about Jameson, it was only adding to the ‘What if’s’. Well we all have ‘What if’s’ in our life, right? So I made another decision – to forget about the syndrome. I am not turning a blind eye, but spending all the time I can with Jameson is the only way to learn about him and what his possible needs might be, just like it has been with Jackson over the past 3 years. It’s awesome to know that there are lots of people around the world with the same thing Jameson has, but there is only 1 Jameson Utah Meyer and his story is going to be slightly different than others that have Pfeiffer’s.
Jameson was born with a loud healthy cry, he didn’t and hasn’t needed any help breathing, he eats just fine, more than fine actually, lol (sometimes kids are born with palate issues or reflux issues which makes eating an issue), he can see with both of his eyes, and he passed his hearing test. Here we are, 1 month old, doing everything a 1 month is suppose to be doing- he holds his head up every chance he gets, he loves tummy time, he’s starting to follow objects with his eyes, and he’ll push down and put weight on his legs if you stand him up. So right now we’re looking forward to meeting the doctor’s at Scott & White next week, and then the following week we’re headed to Dallas to meet the doctor’s the Craniofacial Center there.
Here are some picture’s from this month: