Jameson’s Medical History

2012

  • January 7, 2012 – Born! 6lb. 2oz, 18.5 in., head circ 32.5cm.
  • January 8, 2012 – Ultrasounds on his head, kidneys and bladder – all tests were normal!
  • January 8, 2012 – Hearing test – failed both ears
  • January 9, 2012 – 4 point stress test (test was normal) and blood drawn for genetic testing
  • January 9, 2012 – Discharged
  • January 11. 2012 – Mother/Baby Well Visit – Bili-rubin level was 19.6 and weight was 5lb. 6 oz.
  • January 11, 2012 – Admitted to Peds unit for jaundice and put under bili-lights for 18 hours
  • January 12, 2012 – Cardio ultrasound for his heart – results were normal; bili-rubin came down to 11
  • January 12, 2012 – Discharged (again!)
  • January 14, 2012 – Mother/Baby Well Visit
  • January 14, 2012 – 2nd hearing test – left ear pass, right ear failed
  • January 18, 2012 – Genetics Appointment – blood drawn to test for Crouzon, Apert, Pfeiffer, and Jackson-Weiss Syndromes, Muenke Syndrome and Saethre-Chotzen Syndrome – Test came back positive for Pfeiffer Syndrome.
  • January 23, 2012 – 2 week Well Visit – 6lb. 12oz, 20.5 in, head circ 32.9cm.
  • January 25, 2012 – 3rd hearing test – both ears pass
  • January 27, 2012 – Eye appointment with Pediatric Ophthalmologist – results were normal
  • January 30, 2012 – Ultrasound for his spine – results were normal
  • February 14, 2012 – Craniofacial Consult
  • February 22, 2012 – 2nd Craniofacial Consult
  • February 27, 2012 – 2nd eye appointment – results were normal
  • February 28, 2012 – 2 month Well Visit, 10lbs. 5oz, 21.5 in., head circ 36cm.
  • March 6, 2012 – Follow up genetics appointment
  • April 13, 2012 – Orthopedics
  • May 16, 2012 – MRI ~ results were good!  No immediate surgery needed.
  • May 16, 2012 – Follow Up w/ Dr. Fearon
  • May 17, 2012 – 4 Month Well Check – 13 lbs, 24.5 in, head circ 39 cm.
  • July 24, 2012 – 6 Month Well Check – 14 lbs. 10 oz., 25.5 in., head circ 39.5 cm
  • July 31, 2012 – Hearing Exam – still not passing 100%
  • October 15 2012 – Sleep Study – passed! 94 saturation!
  • October 16, 2012 – Follow Up w/Dr. Fearon
  • November 7, 2012 – Well Check – 16 lbs, 26 in
  • November 9, 2012 – Blood drawn to test for thyroid and growth hormone deficiencies
  • December 11, 2012 – First Craniofacial Reconstruction scheduled!

2013

  • September 26, 2013 – ABR – confirmed moderate hearing loss in both ears

2014

  • January 2014 – MRI & Sleep Study showed O2 at 87
  • March 17, 2014 – 2nd Surgery – Posterior Cranial Vault and new ear tubes
  • September 30, 2014 – MRI

2015

  • February 2015 – Annual Sleep Study – results = severe sleep apnea
  • May 2015 – new tubes
  • December 2016 – Tonsiladenoidectomy, turbinate and soft palate reconstruction, new tubes again!

2016

  • March 2016 – Follow up sleep study from tonsiladenoidectomy = no change = severe sleep apnea
  • June 2016 – Tracheostomy for obstructive sleep apnea

23 thoughts on “Jameson’s Medical History

  1. Hey there little guy,

    Hang in there. I know those tests and Mri scans are tough I have had 4 myself. Keep fighting, It gets easier. I was born different to. Think of how boring the world would be if we were all the same. Its much more fun to be an individual and different. It just means you are more special:) I tell you what, if it is ok with your mom I have a ton of hotwheels and matchbox cars that I collected over the years, I have a boatload of duplicates and If it’s ok I would like to send them to you. They are all corvettes which is my favorite car. I know I loved cars when I was your age which was a very long time ago. SO I will leave my email address and you can send me an address where I can ship them out, just make sure it’s ok with your mom first:)

    All the best,

    Darrell

    1. Hi Darrell,

      That is so incredibly thoughtful! He actually has an MRI on this coming Tuesday 😉 He’s all boy and loves cars, trucks, balls – you name it lol. I will message you our address, Thank you 🙂

  2. Hi,

    Our family can relate to some of what you are experiencing. Our youngest son was born with Treacher Collins Syndrome, a similar cranial issue although one that is usually restricted to cranialfacial. I had to chuckle at your Medical History list only because it looked so familiar. Joe was diagnosed at 4 months and by six months had a cranialfacial surgeon, a cranialfacial orthodontist, an ENT, a pediatric opthamologist, a pediatric heart specialist, a geneticist and a genetic counselor. Plus a regular doctor. 🙂

    It was a very difficult first couple of years not knowing what would need to happen when but Joe is now 12 years old, 5′ 5″, with an inquisitive and loving personality. He has had 10 surgeries – a fact he proudly trots out whenever asked to share something about himself. It has never been easy and we continue to struggle with hearing and speech issues as well as be watchful for things we didn’t realize might be an issue like him being winded and light-headed playing sports because he wasn’t getting enough oxygen through misshapen nasal passages.

    Many things in life are challenges. This is just one of them.

    I wish you all the best.

    Darcy Schatz

  3. I just saw this on my FB news feed today…you truly touched my heart with sweet Jameson’s story. I don’t have children but I have two nieces that I constantly work to show them that everyone in the world is born different and has different beliefs. Hope all is well with the MRI tomorrow ♡

  4. Now that I have raised my son, my hope is to one day have a grand-child. Although everyone prays for “healthy” children, if I were to have a grandbaby as amazing & beautiful as Jameson, I will consider myself very blessed. 🙂

  5. As a Mom, I just want to say I see more and more parents trying to break down the barriers, for the love of their child. Is there no truer love or cause if not a parents love and need to protect their child? One of my best friends children was diagnosed with Autism at TWO and if she hadn’t fought for him and his needs he would not be where he is today( he’s15 now). Your book, your blog..just all of it awe inspiring. My prayers for your family and know that tomorrow is a new day and tho I am not very eloquent lol you keep on doing what you are doing and your family is blessed. In Ecclesiasties 3 I choose the following..there is a time to be born, a time to laugh, a time to weep and a time to dance, a time to heal, time to embrace, a time for peace, and lastly ..always a time to love:). Big hugs to Jameson.

  6. To all your family:
    You have a true warrior at home!
    And I guess he will grow up to be a life-changing person who will bring light and joy into the life of many!

  7. Fingers crossed! I’m deeply touched by your journal and stories about your son. It shows me how amazing parents’ love are, and I just can’t help not leaving a reply. With love, care and education, I’m one that believe that your son will grow up to be amazing. Keep going! <3

  8. Your son is just a little cutie. I wish him nothing but happiness and joy. From one mom to another, I pray that your son’s medical procedures continue to go well and that your son has a long, beautiful, healthy life.

  9. What a precious, brave and beautiful boy you have! He is gorgeous! I have a teenage cousin with Pfeiffer Syndrome and she is one of the most vivacious, confident and hilarious people i know! She lets nothing stand in her way and never fails to make us laugh. I know your baby boy will be the same and live an incredible life. I wish you all the best and sending my love to your little man! I have no doubt he will do amazing things!

  10. My dad (he’s 54) has crouzon syndrom, a very rare thing, and here I am perfectly normal, with a dad that is really amazing. When people laughed at him, he showed them how amazing he could be, and how laughing about people goes both ways. Don’t let anything stop you Jameson! I give all my support to your parents and wish you all the best. If you feel like you need to talk or have questions feel free to e-mail me! Isabelle

  11. Thank you so much for sharing your story. I saw it pop up in my FB newsfeed as well. Your son is so precious, what a little blessing. I promise you and all other mommies of “different” children, my girls and I (3yrs and 6m) will always go out of our way to say hi and introduce ourselves. My daughter even at such a young and tender age hates to see anyone left out. I’m sure she and Jameson would play very well together 🙂

    By now he’s already had the MRI. I pray all is well and Jameson continues to grow and thrive. And what a great job mama, you are so brave to step up and speak out for your son. Advocating for our babies is so important. Love and prayers for you and your fmily!

  12. I just found your blog through some feed from HuffPost on my FB page. I wanted to send tons of good luck for the MRI results. My daughter was born with a milder form of syndromic craniostenosis (surgically remedied when she was 4 and a half months old with no consequences at all at any level- neurological, developmental, etc) linked to a fatty filum in her bone marrow (surgically remedied at 1 year old), ano-rectal malformation (surgically remedied at 7 months-old) and one kidney plus some cervical vertebrae malformed. we went through surgeries and MRIs and constant check ups for 2 years straight, luckily now all that could be remedied in the OR has been done, now what remains is nothing, compared to before.
    I understand your fear/confusion/sense of guilt (?)at birth (I got to see my baby one full minute before she was tranferred to a different hospital in a whole different town while I was recovering and I saw her again only after 4 days, which was and still is the worst and most painful thing that has ever happened to me, and consider that I lost my father when I was 14…) and all that came after.
    It is hard to recover from such pains, you never actually do, there is always something/someone that points out something odd and you recall everything and you cry out loud or softly inside you. At least, this is how I feel everyday.
    I will think of you always, and if I ever meet you somewhere in the world (we are in Italy) I will be sure to approach your beautiful kid and your wonderful family.

    Anna

  13. 😮 wow what a journey, Jameson is an astounding little champion,♥♥♥♥ 😀 Best wishes and positiveness for his well-being, glad to see he seems content and his big brother is wonderful with him 🙂 ☺

  14. Thanks for sending this Sara! I am amazed at the variety of comments re:the Mom’s and childrens journey. No one could be sweeter or cuter than your darling Peter! Gramma

  15. Dear Jeremy’s Mum

    You don’t need me to say but it’s you, and people like you, provide the real life inspiration and hope for all of us.

    Jeremy is well loved and will, no doubt, grow up with a wonderful understanding that comes from the pain that many of us try so desperately to insulate ourselves from;a cocoon that allows us to not develop the insights we ourselves and our communities need to be healthy.

    From what I’ve seen Jeremy has such a loving environment, mother, family and community, that he will probably grow up with great insight and to contemplate humankind foibles with a view to educate.

    Thank you

    Robert

  16. Dearest Bright and Beautiful One,
    A friend of mine shared the Huffington Post of your blog and I was very moved. People can be so cruel when they see something or someone different. While I couldn’t possibly fully understand the depth of the many appointments dear Jameson has gone through, I am a breast cancer survivor who had a unilateral mastectomy at age 35 and 3 years later, when I’m not wearing a prosthesis or form or anything, people sometimes give me looks and I can relate to it can hurt. I found being vocal as you have, is the best way to educate people that different is not bad or weird, it’s just different. I am working hard to boost love, kindness, and compassion in the world, and teach others that no being is any more or less sacred than another. I commend you and thank you, and you have an exceptionally brilliant son! There’s a great quote, I think it’s Dr. Seuss.. something along the lines of those who mind, don’t matter, and those who matter, don’t mind. Love and light and blessings to your whole family!

    Warmly,
    Chrissy in WA

  17. Dear Jameson (and family),
    A delight to meet you if only through the internet.
    You have probably been wondering on and off why your parents keep taking you to that strange place filled with strange people called a hospital. Well you see, parents like to fuss and get worried. There really isn’t much you can do about it. Just hang in there. They usually grow out of that phase about the time you get into your late teens. I know, that’s a long time but you appear to be a bright guy who can handle things. When you get the communication gig down just tell mom and dad to relax. Things tend to work themselves out the way they are supposed to.
    You also need to tell your mom to stop blowing gaskets about what people say on the internet. Most of the people on the internet, and virtually all the ones that ‘troll’ have problems. Yes, sad but true, they are a bit defective. Usually you can’t see it but it sure is easy to tell by the way they act. Proper responsible adults never randomly spew criticism and belittle people. Just think of them as dysfunctional and move on.
    When I saw your picture on the net I instantly reflected on a mistake I once made. I was working with handicapped people, having them ride horses. That is a great self esteem, balance, coordination builder as well as physical therapy. Don’t forget to tell your parents to look into that.
    But anyway, we had this one kid who really really REALLLY wanted to get to know horses. Like climb underneath them and you name it. So I snatch the little short stuff out from under the wheels so to speak and hmm. Wow. Cute. Now wait a minute. This isn’t Down. We had a lot of Down syndrome riders. So I’m wracking my brain what special need the kid required to get him up on a horse. I finally got bailed out by our stable boss: ‘Oh! He’s not handicapped. That’s just Pfeiffer syndrome’. Oh great! Want to go for a ride then? I jumped on a horse and had him handed up to me and off we went. He thought it was hilarious. I’ve never heard so much giggling in my life! So that’s a something else you can nag your parents into letting you do.

    Anyway, my very best to you, buddy! Hang in there. The world is just waiting for you. Try to never let things get you down. And of course, always reach for the stars!
    My thoughts go out to you and your family. Ryan

  18. 216570 986858omg! cant imagine how fast time pass, after August, ber months time already and Setempber is the first Christmas season in my place, I really love it! 58032

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