Medical Update on Evangeline

We have spent the last two days at CHOP with Evangeline.

We saw infectious disease yesterday for her bone infection. Her blood work looked wonderful.

Her foot is healing, and she will go back on Wednesday to have her stitches taken out. The dr. usually uses stitches that dissolve, but since he is dealing with a foot and leg that has little blood flow and no nerve function, he felt the dissolvable kind would only get infected.

It is my understanding that he will do surgery in about a month to properly align both feet. She will be in casts for a couple of months, and then she will be fitted for braces which she will wear for the rest of her life. Then, she’ll be up walking again.

The only thing that may interrupt this plan is her spine. The dr. believes she not only has Spina Bifida, but also diastomatemyelia, which is a condition where the spinal cord splits, is separated by a bony mass, and then reunites below the mass.

The problem with this is that when she grows, the cord can get caught at the bony mass. It could prevent her from growing, and also cause her to lose function.

We will see the Neurosurgeon on Wednesday to discuss her spine and need for surgery.

In the meantime, Evangeline has a new cause. There are four children she has asked me to find a family for. They are all her friends, and they range from age 10 to 13. I have asked an advocate to look for their files, and they do not exist.

I don’t know if there is any way to request the orphanage provide files for these children. It is my understanding that not very many children are adopted each year from Evangeline’s orphanage. It is a very poor one, and it costs money to prepare files.

My heart is just breaking for the children who are left behind.

Praying for wisdom,

and a miracle.


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  1. Maria Cross says:

    I have been reading your blog since shortly before you left to pick up your girls! We had prayed for Evangeline for a family after we read about her friend that was advocating for her. 🙂 We are also about to leave in a week to adopt a 12 year old girl with cerebral palsy, and I have been glued to your blog since your travels and your trials, and your blessings. 🙂 I appreciate your heart and your honesty! I have not commented until now…but I though I might connect with you over what you just wrote of Evangeline’s diagnosis of diastomatemyelia. Our oldest son Mateo (6 years old- adopted from Guatemala (as a healthy infant) was diagnosed with this (very rare) diastomatemyelia. He has had 2 surgeries. The first one was when he was 3.5 and was a spinal cord detethering at the base of his cord (snipping the phylum). And the second one he just had 6 weeks ago (both at Seattle Children’s Hospital) he had the surgery where they went in above and below his split spinal cord – opened everything up and cleaned up anything between the cord and sewed up into one tube or dura. He is doing great and the Lord has healed him very quickly to the surprise of many drs and nurses. Please contact me if you have any questions!! It is so rare, we have never found other parents to talk to about this, but if we could answer any question (that we can- it is all so complicated) for you we would love to! At the very least we will be praying! (our neurosurgeon at Seattle Children’s is amazing if you need someone with the experience- as much experience as you can get with something so rare)
    Maria Cross
    P.S. I added the new blog I just set up for travel, and I also put our old family blog there too. It is 1.5 years behind, but you might be able to search Fall 2009 to Jan 2010 for our experience with Mateo’s first surgery.
    Maria Cross recently posted..Beautiful Family Pictures taken by Aunt MindyMy Profile

  2. Auey RodrĂ­guez says:

    Hi Diane!!!
    Do you think that there’s any way we can help to provide some fund for the Evangeline’s orphanage?? So they can prepare files for the chilren.
    I have no idea how things work at orphanages, it’s just an idea.
    If they prepare the files for those children they would be available for adoption.
    happy to see the progress with your relationship with your daughters and so happy to see them healing in every aspect of their life.

  3. Karen says:

    That is so awesome Diane ! Emily had her post op this week from her diastem surgery and she is doIng great ! Her cord was tethered on the piece of bone so I am very glad it is out !
    I was hoping there would be a way for this miracle to keep on going and that your girls would have friends that we could advocate for as I did with sweet Evangeline. I may have photos of the children she wants to advocate for if you would like to send me their descriptions.

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