Quick MRI Update

JMRIJameson had his follow-up MRI last week.  We had the MRI done close to home and sent his images up to Dallas for Dr. Fearon to review.  This was Jameson’s third MRI, he had the first two in Dallas….the MRI went great, no issues with anesthesia, no side effects, but they wouldn’t let me hold him until he fell asleep 🙁  In Dallas I was allowed to hold him until the anesthesia took effect.  This time they made me wait at the door and “watch”.  Ugh, that was horrible, watching him scream for me while they held the mask to his face.  But, we made it through no worse for wear.

Anyway, on to the important part.  Dr. Fearon said he is really please with this MRI comparing it to his pre-op MRI, and we are looking at maybe 18-24 months until his next MRI!  Great news!  He said his only concern is how much oxygen he’s getting, so we shall see what his sleep study shows.  We (my husband and I) are fairly confident that it will not be great.  Jameson has always snored, but lately it’s gone to a whole new level.  I could tune it out before, but it is actually incredibly hard to sleep if he crawls in bed with us.  Who knows, maybe he’ll surprise us. 😉

22 thoughts on “Quick MRI Update

    1. Has Jameson had the laForte mid face surgery yet? I’ve just found your blog and it’s amazing to me- my son is 12 and has Pfeiffers syndrome and your son and mine sound like they have the same symptoms. My son is doing fabulously- he’s a gorgeous well adjusted boy. I’ve never joined any groups or forums so it’s great to see little Jameson’s progress- my sons snoring got much better after his first laForte mid face surgery, but he can still wake the dead;) we are getting ready for a second laForte surgery soon -I showed my son Jameson’s picture and he said “he has Pfeiffers!! He looks just like me!” It was great for him to see someone else with Pfeiffers syndrome- thanks for your blog and I look forward to following his progress!

      1. HI, Im Andrea and I’ve got Pfeiffersyndrome too… I just read your comment and I see that you’ve got a boy with this syndrome.
        Im 24 years old and Im loving life despite of my syndrome.
        I would love to get in contact with children/adults who are having the same and share stories etc.
        Can you reply to this when you see it so maybe we can get in contact?!
        THANKS!X

        1. Hi Andrea,

          Thank you for your message – forgive me for taking so long to reply! I’m so happy to meet you and hear how wonderful you are doing!

  1. Bonnie, I came across the picture of your son via a posting and was kind of shocked to see your sons photo. I had a brother and a sister who were born in the 1930’s who were duplicates of your son. My brother and I are the only survivors of 7 children who died of a number of different things. I will go into that another time but for now I wanted to tell you about the two who resemble your son. Both of them were sickly children one my sister passed away as a child, my brother died at age 17. Both of them spent great deal of time in hospitals without a definite diagnosis, I’m not sure they even knew what it was back then. My brother as a child was struck in the eye as a young boy and after a period of about six years he lost or began to lose hi vision in that eye. At that time they attributed his loss of vision to the trauma of six years before. Eventually he lost vision in his other eye again they attributed that to the trauma of his other eye. He was treated at every available hospital including Wills eye in Philadelphia. The story goes on but it is a very sad story overall because it decimated what few finances they had, but never would they compromise his care. My father was a coal miner from Northeastern Pa. Both were immigrants from Italy. As I understand Pfeiffers is a genetic disease I find that interesting as my parents were first cousins married in Italy in the early part of the 20th century, perhaps arranged but were not sure. Now we wonder if perhaps there was a connection for their deaths related to genetic defects. At a future point I will e-mail you photos of these children. All of this is academic for us but I m curious as to your thoughts. My family and I pledge our thought and prayers for your son and that they will cure him because he is a beautiful child who is a twin to my brother and sister. God bless and keep your son and your family wrapped tightly in his arms. Sincerely William Rovito

  2. Hi Bonnie, I came across Jameson’s story by accident and it made me cry. A happy/sad story full of love, frustration, encouragement and hope. My son doesn’t have Pfeiffers syndrome, but he does have Down Syndrome which makes him look and behave different from the norm, but hey, what us the norm?
    Little Jameson is so cute, he does not look “scary”, and yes, it would be nice if people came over and said hi instead of staring. A lot of women used to come over and talk to my son when he was a baby and a toddler, but now that he is a thirteen year old boy, people tend to avoid him. I think this is partly due to hissychological age, which varies from 5 to 13! But, he us a happy boy who enjoys life and has no hangups-hence what is the norm!
    Any way, enough of my story. I haven’t read all of Jameson’s journey yet, but I will get there. I just wanted your family to know that not all of us humans are uncaring or see Jameson in a negative way. I reported your story on Face Book here in Australia and my friends also think Jameson is adorable and we all wish him lots if love, health, and happiness as he travels on.xx

  3. Hi did you receive our private email?? If not please email us on flharland@hotmail.com and I will send it through again.

    You made me laugh with the snoring comment, we just purchased a KING size bed to accommodate our little 6 month old.. So now I have both him and daddy snoring their little heads off, God Bless 🙂

    Lots of love and Prayers from down here in Australia..

    Fabian Lyn And Baby Marsden

  4. Hi Jameson’s family! We have just started an Apert syndrome Community on the RareConnect.org platform. We’d be really delighted if you could join in with our webinar tomorrow morning/late tonight (depending on time zone!) on the RareConnect community Details at this link: http://ow.ly/i/79POM please do come along and join our community too!

  5. Wow! Just wanted to pop by and leave a comment about Jameson. I too like a lot of other people that have commented was whizzing through my facebook news feed the other day and happened across the photo of Jameson. Talk about put a huge smile on my face!! Although Jameson doesn’t look like my Son (who was born with craniosynostosis), in so so many ways he does!!. My son Anthony is a month shy of 14 and he has the same features as Jameson (and lots of other ‘cranio’ kids, even the ones who have grown up into adults already). My son is Maori (NZ indigenous people) so he has Maori features, dark hair, skin, eyes, coarse hair, but he also has the cranio features, low set ears, wide bridge across the nose, protruding eyes and of course the unusual shaped head. Anthony is well and too has endured some rough times medically and physically, he has had the scary, alien, ugly comments about his looks when he was younger but I wanted to leave this comment just to say thank you for posting this blog. I think of these kids as having a designer look, yes it can be very scary with the health issues that can happen with this condition, I get that, but these kids like yours and mine, they have something special that all the other ‘normal’ kids don’t have, their own special little club (albeit anonymous, although not so much now with the likes of social media etc), Even my 7 year old the other day looked at Jameson’s photo, she smiled, and yelled out to Anthony “there’s a photo of your little cousin on facebook” Anyway, thanks again. Your post made my day!! Heather

  6. As a Grandmother of a child (now teen) with a rare genetic disorder, I can offer the support, compassion and empathy we all need when facing life’s issues. We never know what is going to hit us tomorrow, next month, or next year. Yet, our kids bring us never ending joy. Like one of the other people said “what is normal?”. My normal is a beautiful teen Jacob. He just happens to have Noonans Syndrome. Jameson is a sweet young boy and I love seeing his stories. I can say that earplugs are worth it. They dull the roar of the snore!

  7. Hi! A great story of courage and honesty! Parenthood is tough at the best of times, but harder with a known set of obstacles to hurdle! Our son is now 20 and has apert syndrome. He’s undergone heaps of surgery’s and still gets stared at by folk who don’t know how to react to the unique situations around them. We tend to feel quite sad for them – they miss out on a lot that life has to offer!!! Our family chooses to thank God for difference and celebrate His provision in our family. Bless you and your family.

  8. I’m so happy to hear that Jameson’s MRI was really good. That’s great news! I hope you get good news from the sleep study. I’m sending LOTS of hugs and prayers to Jameson. I’m sending the same to you and your husband. Love, Bonnie Date: Fri, 10 Oct 2014 13:32:13 +0000 To: bermilio711@outlook.com

  9. Thinking of you and hope all goes will ,wouldn’t,t it be wonderful if there were no sickness and suffering especially when it comes to our children.my thoughts are with you both and especially Jamison

  10. I read your story and it touched my heart. Please keep updating us. What kinds of fun things does Jameson like?

    Amanda and Dan, Missouri.

  11. Reading or watching the news can sometimes be a heart rending experience. There is so much that seems wrong everywhere we turn, that when something driven by love and compassion makes its case to be heard and understood it makes it all the more poignant. Like an oasis in the middle of a desert. Your blog was that for me today. I am glad Jameson is surrounded by love, and just as important that you are also surrounded by love. That photograph of Jameson will stay in my heart forever and I hope he grows up reflecting the beauty and understanding you show in your words. He is very special, as are all the other amazing children in these writings, as unique as a snowflake and as beautiful. Thank you for sharing his story.

    1. HAPPY TO HEAR JAMISONS MRI WENT WELL,THINKING OF HIM AND THE FAMILY .LOOKIN FORWARD TO HEARING GOOD NEWS IN THE FUTURE

  12. Hello,

    Thank you for your text, it moved me a lot.
    My older sister has 2 boys, the small one who is 3, was born with one arm. I don’t see the “difference” anymore, he is such a beautiful boy as yours. But each time we go out, and I babysit them, reality slapps me in the face and it’s hard to realize that some people are not always ready to accept someone “different”. Spending time with him made me feel stronger and more open to the world and its variety, it seems a bit stupid to write it down but i feel like a better person since he was born.

    Take care you and your family

    All my best,

    H

    ps: sorry if I did english mistakes

  13. How is the sleep apnea going? My son doesn’t share Jameson’s condition, but we did realize he had sleep apnea when he was three. Go figure! It’s not normal to snore! We never did the surgery though, because his sleep apnea was mild to moderate and a lot of our research pointed to a high chance of no improvement after surgery – something like 50% if I remember correctly, but that was a while back – and kids who saw no improvement might go on to have a tissue in the nose removed, which often was helpful and was a much more minor surgery. We never found a surgeon to do that one, so after seeing a heart doctor (because of a murmur), we felt confident in the doctor’s response that the murmur wasn’t caused by the apnea and that the apnea wasn’t severe enough to cause any kind of heart damage. Phew! Thankfully! So, we’ve actually found a lot of improvement with doing diet changes – absolutely NO foods that he’s sensitive to and foods like dairy and sugar. Lately we discovered peanuts! We also found that lifting the head of the bed 6-8 inches is beneficial. Of course, since inflammatory response can be an issue, anything like probiotics and raw fruits and vegetables (my younger daughter can’t have bananas because it triggers her snoring, and I think it helps my son too) and plenty of fluids also helps.

    Just wondering where you guys have been at in terms of the sleep apnea. Did you get any relief from surgery or do you still continue to struggle in that area? Have you considered turbinate reduction (that’s the other procedure that can be done, and it can even be done with a cold ablation laser, but like I said, I wasn’t able to find a doctor for my son in my area).

    I am glad that our son, although he still struggles with mouth breathing, no longer snores loudly and seems much more rested. He doesn’t grind his teeth anymore either, which was a huge problem for his teeth and caused really bad decay.

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