Chiari Awareness

September is Chiari awareness month! Be aware or beware rather of this condition and it’s cohorts.

I’ll be posting Chiari facts all month long. In the short time Our family has been aware of this condition Olive has had six MRIs. Since I get physically ill around an MRI, she’s done them all by herself watching movies. Our next MRI is scheduled for December of 2020, so Olive is enjoying the break.

Clearance – surgery a success

Olive was cleared this am via MRI. Her brain is not longer in her spinal column she has “robust” spinal fluid now going to all parts of her spine. She can swing and dance and fall like normal children can without fear of paralysis. She can laugh without losing her hands and she can hang upside down. She has made noteable gains in terms of developmental issues and no longer suffers from debilitating headaches.

Olive will need lots of play to rebuild her balance and strengthen her muscles again after more than a year of no activity.

We are so thankful for all the prayer and support and love. We are also thankful for Seattle Children’s Hospital and Dr. Ellenbogen.

Here is to hoping the gains continue and remain.

Back to normal

We are heading back to normal and Olive got to go back to public places by going to church today. 6 weeks is on Tuesday which means that her incision shouldn’t open if she has to sneeze or gets sick. She is back to her pre-surgery normal of no recess and no gym, but she gets to go back to school a couple days this week.

Olive will be back on Tuesday and Friday. Monday, Wed and Thursday she has some all day doctors appointments. She is excited but scared and feels like everyone will be staring at her.

MLK Day

Happy MLK day. We are still working on Olive’s scar and keeping her neck loose so she isn’t suffering.

Her scar is now healing since her stitches were removed and we are hoping to get some silicon patches soon to fit that area to help minimize her scarring.

She’s had some painful balling and cramping of the neck muscle this week on the left side, so we are trying to keep it loose so she can move. The more she moves her neck the faster it will heal and feel better.

Next steps

Our next steps, besides current monitoring and support, will be to journey back down to Seattle to meet with Dr. E. Olive will get another full spine study and a flow study MRI done.

This is done to make sure Olive has not

1. Developed a syrinx now that her CFS flow has been altered

2. Developed hydrocephalus as a result of her CSF flow being altered

3. Had overgrowth of all the bone they took out. Bone when cut can grow back unpredictably, especially in children. Since it’s so close to the brain and spine any overgrowth could be catastrophic.

4. Gone back to restricted CSF flow.

Any of these results during our next meeting in March could result in immediate more invasive surgery for her.

I personally can not wait until we get clearance that we are free to live our lives and Olive is free to go to summer camp and do things kids need to do.

A new brain

Things have changed for the better post surgery but they have not been without their challenges. A week out of the surgery Olive was having difficulty remembering her multiplication facts and simple academic things that were not an issue before.

We are working with therapists and tutors to get her the help she needs to return to school and keep up.

She will undergo further testing for viseo-spatial skills, general OT skills, word processing. language processing as well as a full neuropsychological evaluation.

The road to recovery after your brain flow is altered is at least 3 months. She seems to get better everyday and this is very encouraging. Just living without the headaches seems like gift enough at this point. She had enjoyed doing well academically and we hope to restore that for her and keep building up her confidence.