The lead up to surgery led to a the discovery of a connective tissue disorder. We do not know what type she has and have had to see several geneticists about this thus far.
So far, the best guess is HEDS which stands for Hypermobile Ehlers Danlos Syndrome. This means that she is very bendy and it can cause harm to her joints and body. As well as harming joints it can come with quite a bit of pain. She is able to sublimate joints and do things that others would not be able to do without breaking their joints. We’ve know for some time that flexibility was an issue, but did not know it could get worse or that it was a condition.
Aside from the joint issues it can lead to overall nerve problems. The nerves that control the eyes and ears are the ones we focus on most due to the direct impact it has on everyday functioning and quality of life. Olive already has deafness is one ear and issues with her eye nerves, but it is stable at this time.
For more information about Ehlers Danlos see below:
As a result of these discoveries we are seeing many specialist during January to determine braces and best practices to prevent any further damage and to continue monitoring. We have new Orthotics that are coming from her physical therapist to prevent her ankle from rolling in.
Over the past year it has occurred to me that she is standing on the ball of her ankle. (Meaning it will roll until the ball is on the ground instead of the bottom of her foot.) This is dangerous and could lead to joint damage, so we are getting educated as a family on how to keep her exercised and fit considering that her needs are going to be somewhat different. This condition is somewhat rare but there are enough studies done that best practices have been established.
Olive will be four weeks post op next Tuesday. She is going remarkably well considering the surgery was shortly in the past. We are having some issues with healing. Olive did not shed her glue and did not dissolve her outside stitches appropriately. This is likely due to other genetic factors we are looking into is, specifically connective tissue disorder. Meaning she heals slower and also differently.
We had to pull most of her medical glue off which was painful and her dissolvable stitches were becoming embedded into her tissue because she wasn’t able to dissolve them on her own. Since her wound is less stable we are being very careful to prevent her from lifting or putting her head back to look up because it puts too much pressure on the wound.
The fear is that the wound will dehiscence which means to open up entirely even though it should be mostly healed. This can happen even long after the life of the stitches.
Medical description if this below.
So she is on very light duty because of this. As this is flu and illness season, she has to avoid any illness that could cause sneezing, vomiting it any other disease that could put pressure on her neck.
Although she is feeling better she needs just a bit longer before being exposed to illness and normal activities like carrying books, lifting her back pack, etc. She is very antsy to return back to school to her friends.
January 1st will be exactly 2 weeks since the surgery. Olive’s head is sore but she is still doing better than before surgery. We are excited to see how well she does when she is healed.
Since Olive got the bone decompression, I thought I’d post a photo to show the difference with a Chiari Skull.
We are glad to be home. There is so much laundry to do and so much cleaning to make things safe for Olive. Merry Xmas everyone!
We got home late last night. We had parked at diamond airport parking so naturally there was a foot of snow on our car. Olive still feels better than before the surgery. By that I mean she is experiencing less pain than before. We are happy to be home.
We are writing from SeaTac.
Olive is exhausted from recuperation and working hard to heal. She is weak and tired and getting lots of little naps in.
Our main risk right now is infection and hydrocephalus. Infection at the sight and hydrocephalus because they have altered her normal CSF flow. I’m watching her with a hawk eye. It’s a long travel day for us, but we get to be home for Christmas Eve.
Olive is self described as “cranky” today. We are watching a lot of movies and preparing to fly home tomorrow to Anchorage. We are now routinely washing her incision and that has been a small source of pain. We are all Seattle’d out at this point and everyone is looking forward to putting feet on Alaskan Ground.