Sunday, April 11, 2010

MRI results.... well not really!

Hi Friends (:

Well we made an appointment with a neurosurgeon for April 29th at the beginning of this past week... but I was secretly hoping we could get it moved earlier so I had yet to blog it and make it official... but it's official. We will be seeing Dr. Puccioni, who is supposed to be a rockin neurosurgeon, so we are happy about that. John has actually heard of him around the OR at UNMC, so that is probably a good sign.

The results of Evie's MRI are kind of up in the air. On the CT that she had in the hospital in February it looked as if her sutures were wide open. On the MRI last week it looked like they were completely closed! Unfortunately with hypophosphatasia, Evie's bones are so demineralized it's hard to tell the difference between what is bone and what is cartilage. There is another fancy CT scan that makes a 3 dimensional view of the skull... and that may be our next step. I am going to try to push and have that done before our neurosurgery appointment... so I can take the original CT, the MRI, and the new 3D CT, and hopefully by putting the three of them together we can have a better idea of what we're looking at.

I am also trying to find some other parents whose kids have had craniosynostosis surgery to see how the experience was for them. If you or anyone you know has done the surgery, I would love to chat with you. I would love to find someone who has had hypophosphatasia AND the craniosynostosis, but with the disease being so rare, it's been a challenge!!!

On a lighter more wonderful note, we had an awesome Sunday, with a great message at church this morning, and fun afternoon at Bible Study. I hope I never take for granted the blessing of being part of God's family, and being loved by His people. I am so thankful for the trials of this past year and my deepened appreciation for the love of God.

We have an easy week, just PT on Wednesday and a pulmonology appointment Thursday morning, so I am planning on spending a lot of time outside in this beautiful weather!

Love you friends! Will update soon (:


  1. Lindsey,
    I am so glad that you are seeing Dr. Mark Puccioni!! He is the brother of a good friend of mine and I have met him and known about him through Mary for years. He is very gifted and he is a wonderful person. He has a special child himself. His oldest boy has Downs Syndrome. He and his wife, Emily (also a physician) are committed to life and are great parents. I will be praying for you as always, but I can see God's hand in your getting in to see this particular doc. Be blessed today!

  2. I came here for one thing, and found we have something in common! More on why I came in a minute! Our youngest daughter had Sagital Craniosynostosis. (Dang 2 years after her surgery and I can still type that word like it's no biggie! LOL) I didn't even finish reading your post because I saw cranio and had to tell you we have that in common!!!!

    Please email me!! You can respond to this comment (which is my blog address's email), or email me at

    I'm a fellow NE mom, and am the Social Media Coordinator for Top to Bottom Baby Boutique ( an Omaha based Cloth Diaper retailer. From what I hear you don't cloth diaper (Patti Cummings sent me to your blog). We have a new blog starting ( and we're wanting to feature Nebraska Mom's. Your name was brought up as a mom to interview! Please let me know if you would be interested.

    OR please email me about anything regarding Cranio! Our DD is now 2 1/2 and had her surgery in January 2008. We didn't do surgery here in Nebraska, we found a new less invasive method in Texas and so took her there. If you search my blog for cranio, you can read some of our journey! (

  3. Lindsey, I was just checking in tonight! So glad things are going well. I will be updating my bible study ladies tomorrow on your current happenings. Sounds like we'll be praying for "clarity" this time around, as you prepare to see the new doctor. We'll pray for wisdom as he looks at the scans and determines a treatment plan. I am confident in this: God is holding Evie every day, and he will make the path easy! Take care! Amanda

  4. Lindsey--
    Dr. Puccioni is Olivia's Neurosurgeon. And he is amazing!!! He performed Olivia's dethering a couple of years ago (where he separated each little, tiny nerve ending that was stuck down on her spinal chord). He did an AMAZING job and, really, is superior at his job.

    If you have any other questions, give me a call. You are in good hands with Pucc. Please tell him "Hi" from Olivia and her Mom.