Ready for Round Two

First, let me back track:

January 30, 2014
January 30, 2014

At Jameson’s post-op appointment last year (Feb 2013) Dr. Fearon was very pleased with the surgery and Jameson’s recovery.  His instructions were to let Jameson just be a toddler, do a 6 month follow up sleep study and a 1 year follow up MRI and visit with him.   Everything else along the way we could do here at home, ENT, eyes, audiology…

So, that’s what we did.  Jameson visits his ophthalmologist every 4 months to check for corneal dryness and optic pressure; so far so good!  ENT, well, you all know by now Jameson has mild to moderate hearing loss.  He got his hearing aids mid-December.  The first two weeks were amazing!  He didn’t try to take them out, and we all noticed he was a lot more verbal.  We were regularly visiting his audiologist to make sure the settings were where they needed to be.  Then all of a sudden Jameson started pulling his hearing aids out.  This was so disappointing because he started off so good.  Then we noticed that when they were in he would grab at his ears, like he was holding them.  Initially we thought maybe it’s too loud.  At our follow up appointment that week I told his audiologist everything that was going on.  She checked his ears and couldn’t get a reading and sent us to ENT.  That’s when we learned that both of Jameson’s tubes were now out (one had been out for a while) and Jameson has fluid in his ears again.  So, I haven’t even bothered to put Jameson’s hearing aids in since.  Having fluid in your ears can be painful, like being on an airplane and never being able to pop your ears and I wanted to bother Jameson as little as possible.  His ENT said to go ahead and put new tubes in his ears.  All of this took place over this last month.

On to our follow up with Dr. Fearon:

We started off our day bright and early and checked in to Medical City Dallas at 6:00am for Jameson’s MRI.  We got called back to start shortly after 7:00am and he was finished relatively quick, I think it took between 45 minutes to 1 hour.  He literally woke right up, no crying at all like last time either.  We sat for about 30 minutes or so while he drank some apple juice and ate his little teddy grahams – which he demolished, lol.  Next up was anthropology.  Jameson gets measured either yearly or before every operation by the anthropologist.  I find this appointment so fascinating, he uses some type of caliper and measures a million different angles around Jameson’s skull.  Very cool.  Then we had media, the same goes here, either before surgery or for yearly follow ups they take pictures of his peanut head.

Still groggy, just waking up from his MRI
Still groggy, just waking up from his MRI
Demolishing his apple juice an Teddy Grahams
Demolishing his apple juice and Teddy Grahams

 

 

 

 

 

 

 

 

 

 

 

At this point it is about 9:00am.  We don’t see Dr. Fearon until 3:20pm.

Running around ;)
Running around 😉
At his beloved caterpillar :)
At his beloved caterpillar 🙂

 

 

 

 

 

 

We went downstairs and got a bite to eat.  Jameson was full of energy (which surprised the heck out of me for a child who just woke up from sedation), so I let him run around the hospital.  I finally got him to sleep around 12:30pm, and I’m not going to lie, I fell asleep right there with him!  We were upstairs in the children’s area, it was very quiet and we were tucked away in the corner.  I just didn’t even care I was so tired, lol, and I know I had to drive 2.5 hours to get back home.

Sleep finally!
Sleep finally!

Now we’re up to the most important part of the day, our visit with Dr. Fearon.  I have to say that I am so grateful and thankful that Dr. Fearon is Jameson’s doctor.  I can’t even put in to words this man’s ability as a doctor and a surgeon.  We sat down and he showed me Jameson’s previous MRI and his MRI from today.

The first news is that Jameson has developed a chiari malformation, which is very common with Pfeiffer syndrome.  Looking at his MRI you can see a clear difference in the area of fluid surrounding his spinal cord and the base of his neck.  In this MRI there is definitely less fluid space, and his cerebellum has less of a rounded curve then before.  Then moving on to a different area of his brain, I’m not sure what this area is, but it looked like butterfly wings on the MRI.  In Jameson’s last MRI the butterfly wings were symmetrical; on today’s MRI one side was larger than the other – indicating that pressure on his brain is developing.

The good news in all of this is while Jameon’s MRI shows he has developed a chiari, he has not developed any symptoms of a chiari.  The main symptom chiari’s cause is central sleep apnea, where your brain forgets to tell your body to breath while you’re asleep.  At his last sleep study Jameson had one episode of this; Dr. Fearon said that even if he had 7-8 episodes he would be in the “normal” range, so one episode is nothing.  Other signs include dizziness, falling a lot, throwing up – he doesn’t have any of that yet.

So, it’s time for Jameson’s second surgery.  His first surgery was an anterior cranial vault; which modified the front of his skull.  This surgery will be a posterior cranial vault which will make more room in the back of his skull.  They will actually remove some of the bone towards the base of his neck to make a larger area for his spinal cord.  This will take care of his chiari.  I have read about shunts being used to treat chiari’s – I asked Dr. Fearon about this and he said Jameson does not need one, and doesn’t ever see him needing one, (yay!).

We are not at all surprised by this news.  There is something so amazing about the way a parent is in tune with their child.  A few weeks ago Jameson started acting different.  Nothing that I can really describe, he just hasn’t been himself.  He hasn’t had a fever, or classic symptoms of anything, he’s just been off.  We were talking about it last week and said to each other that we thought it was time for Jameson’s next surgery.  So, when Dr. Fearon showed me the results I just nodded, on some level I had already known what was happening.

It looks like Jameson will have surgery in March, we don’t have a date yet, we are waiting for his neurosurgeon to provide his availability.  Instead of getting tubes (he was scheduled for this Thursday to get them) now we are just going to wait and have them put in during his cranial vault to avoid putting him under more than he has to.

We’re going to do Procrit shots again.  Jameson did not need a blood transfusion last time.  Dr. Fearon uses a cell saver that recycles Jameson’s blood back into his body.  The Procrit increases the amount of red-blood cells in the body; with these combined the chances of a blood transfusion are much less.  Dr. Fearon said he typically only recommends the Procrit on children 18 months and younger but because Jameson is so tiny (20 lbs, lol) that it would actually be a good idea to do it again.

Our final appointment:

Our last appointment was with a GI.  Jameson was sent to a GI a month ago because he is so small for his age.   This appointment was a 30 day follow up to see if there was any change after increasing his caloric intake.  His doctor was incredibly pleased, Jameson gained almost 1.5 lbs this last month.  We have put in back on Zantac in addition to adding a pediasure each day and it has made a huge difference!

Here is a picture of Jameson at the caterpillar in October of 2012 and January 2014, a little over a year apart. ♥

Jameson and the caterpillar

17 thoughts on “Ready for Round Two

  1. I just want to say “Jameson, you are such a cute boy! I really LOVE your beautiful smile, and especially those beautiful bright eyes! <3"!

  2. Thank you for sharing your story. We’ve never met, but I just adore little Jameson. He’s beautiful and brave, and obviously loved which makes him a lucky little boy. In my line of work I deal with people who didn’t have the gift of loving parents, and it affects every aspect of their lives. You are an amazing mom. Jameson is blessed to have you, and the world is blessed to have him. Best wishes.

  3. Cool kid.
    I, too have a child who looks different. He had about a billion surgeries and more times than I could count we had to diagnose what the doctors couldn’t. Cranial pressure leading to a spinal decompression surgery was one of the worst/ best ones. Everything that you describe, we’ve been through in one form or another. Try to be strong. Do what you know is right. Tell your beautiful boy how much you love him a hundred times a day and you should get through all the rough parts. We did. Now we’re sailing around the world.

  4. Every person with children should expose them to people with “differences” very early in life. There are many programs where volunteering can make a huge difference.

    My sister Mary was born with hydrocephalus. She was born in 1944 when research was in it’s early infancy stage. At the age of 1 year, she had been vomiting all her nutritional intake and the hospital, which is now Yale, was forced to test further. It took them this long to act as her skull size had increased to the point of knowing she had a serious problem. It was then the surgery was performed to created an opening for the cranial fluid to drain into her spinal column. It was only an opening as the shunts weren’t yet developed. A lot was learned by the medical community with my sisters case. She was given to the age of three to live. When she surpassed the doctors expectations, she was given until the age of 12. She would grown into late adulthood, a physically and mentally challenged individual. She lived her life with our family, in a wheel chair and was the kindest, happiest person I ever met. I was blessed to call her sister.

    Mom was not one to research on her behalf as her generation considered people like her a hinderance and embarrassment to be hidden away and shunned. I was the last of four daughters and at a very young age, realized Mary wasn’t living as fully as she should’ve been. In her later years, I enrolled her in a program called ACORD, which enabled me to use a handivan to take her on fun trips. My children were very young and would accompany us on those trips. They learned empathy to the nth. It is a part of who we are. She realized a life I’m sure she’d hoped for all those years.

    My sister died in 2000, at the age of 56, as a result of the natural shunt becoming blocked. A surgery to insert a shunt resulted in serious complications and she developed a systemic infection and died on December 30, 2000.

    I applaud and support you for the mom you are to Jameson and add your family to my prayers. You have been blessed with an angel. You are a living example of why we are here. Thank you for Jameson’s story. ❤️

  5. I just picked up your article and I am totally in awe of you, in between blowing my nose and wiping the tears away. You have a precious little boy who looks so huggable. People unfortunately are so ignorant and that can breed fear and prejudice. If something is not samey and comfortable it’s unknown and scary.
    I am blessed to have recently become a grandmother and I thank God for being given such a gift as well as my own children. I never take anything for granted.
    You have a gift of a child who needs so much medical intervention but also love and more importantly acceptance. You are giving him that by the bucket load.
    Nobody can understand what you go through every single minute of the day, the angst the worry, the pain, the fear and all the other emotions associated.
    We are approaching the Day of Atonement, this Saturday, the holiest day in the Jewish calendar. I will have your son in my thoughts and pray for him and you, for strength and for improved situations.
    No one asks for trials from God, and you sure have been tested and are doing an amazing job.
    I would come over to you and give Jameson the biggest hello, he’s one cute kid. I would love to tell him how lucky he is to have a mum like you.
    Wishing all you wish for yourself.
    Marilyn, London England.

    NB I’m going to read the piece again, because first time was too blurry!

    Sent from my iPad.

  6. This morning I proudly shared Jameson’s story on my facebook page. My 12 yr old daughter, Kimberly, has craniofacial anomalies very similar to Jameson. Unfortunately, there is no diagnosis for her. You touched my heart in a place that only the mother of a disabled child can. Thank you. Thank you for creating this blog and making such an insightful statement for outwardly disabled children.

  7. Jameson is truly a beautiful little man! I love his smile and admire the strength he (and you as parents) have! I can’t imagine how tough it is to see your sweet child endure surgery and to hear hurtful words, but you all seem to handle it with grace! Your story and letter has touched my heart and when I have my own children I will remember your words! There is clearly so much love in your family.. And love can conquer all!! Thank you for sharing your journey!

  8. How did Jameson’s 2nd surgery go? He’s a cutie, that smile lights up the photos 🙂

  9. I think he is so cute and innocent. I love his face where he has just enjoyed something yummy. Reminds me of my sweet babies so many years ago. I believe he is just an extra special person who has been given a special challenge to get through here on this earth. Best wishes for you always Jameson!

  10. What a trooper! I found your site by serendipity then discovered via the BAM even more. You are doing a great service through your postings about the human spirit, courage, and best of all, love,
    Sally, ’58

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