Contessa needs your prayer!

Posted on May 18, 2015

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When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well with my soul.

We have been trying to keep folks updated on our rapidly changing situation but it is difficult. We have posted a bit on Facebook since that is easy on our phones and sending out a mass email is not. However, we know many of you are not on Facebook regularly, so we apologize that your just now hearing about this.  Finally we are getting around to sending out an update that contained all the information to date.

Thursday afternoon 3 PM
We were driving through Oregon on our way to California. We planned to camp in the redwoods and visit family and supporters afterwords. We stopped for lunch in Grant’s Pass, OR and when Clarissa pulled Tessa out of her car seat she noticed her legs were very strange, like jello, with no muscle tone at all. She could no longer extend her legs and stand on Clarissa’s lap or even sit up; she just slumped over like a new born would. We immediately called a nurse friend and started googling nearby pediatricians. She told us to seek medical help immediately, so we went to the local hospital in the town we were in. Spent 8 hours in the ER while they drew blood, took urine sample, did X-rays, CT scan and Spinal Tap. Nothing came back conclusive.

Friday Morning
By 1am we were admitted into a room, where we crashed (of course after a few meltdowns by Valencia since it was 5 hours past her bedtime and she was a hot mess). The next day our doctor there consulted with a pediatric neurologist from Portland and they decided to airlift us to us children’s hospital in Portland. Even though all Tessa’s vitals were very stable, they were concerned about injury to the spine and didn’t feel safe about us driving that distance. After prayer and talking with an insurance person at AIM we decided to actually go all the way to Seattle Children’s Hospital since Clarissa has a lot of family in the area.

Friday 1:30 PM
At around 1:30 Clarissa and Contessa were picked up and flown up to Boeing field and then moved by ambulance to Seattle Children’s Hospital. John and Valencia got on the road to begin the 7 driving hours (read this takes longer with toddlers) trip to Seattle.

Friday 5 PM
Clarissa and Tessa were met by Clarissa’s mom and our brother in law, Paul who actually works for Seattle Children’s. Tessa was admitted to the Emergency Department, more X-rays, blood work, an MRI were done, and lastly at 3 AM another spinal tap to get more fluid for testing. Finally around 5am (yes 12 hours later no real sleep in the ER) they were placed in the Pediatric Intensive Care Unit.

Saturday
MRI scans revealed inflammation around the spinal cord that is likely causing the loss of muscle tone in her legs. They also saw a type 1 Chiari Malformation (google it if you want more explanation) which can cause neurological issues, but not issues consistent with her symptoms or other aspects of the MRI. They are still waiting for more tests to come back, which could take a few days yet. In the mean time, they decided to move forward with treating Transverse Myelitis which is a condition where the body begins to attack the nerves in the spinal cord, similarly to MS actually but more of a one time thing (we hope and pray). It can often be triggered by a simple virus (Tessa had a cold last week). However it is apparently REALLY rare in children this young. The youngest case was 6 months old and Tessa just turned 8 months. The treatment is steroids to suppress the immune system and bring down the inflammation. Initial response to the steroids could take as much as five days to show up. We are waiting now, hoping and praying that we do see some improvement, and that would help us to know that we are the right track with diagnosis and treatment.

Today (Monday)

Today is day 3 of steroid treatment. They are still hoping for some sign that the steroid treatment is working (even the wiggle of a pinky toe!). After a team of neurologists and neurosurgeons, and neuroradiologists examined again her previous MRIs, they want to get one more scan with contrast to get a clearer picture of her spine as well as to see what may have changed in the past 3 days. That is planned for tomorrow. Pray that she again tolerates being sedated well, with no funky side effects.

If it is indeed Transverse Myelitis, prognosis is uncertain. It could be anything from a full recovery to never being able to walk.

We really want your prayers for our hearts, for our sweet baby girl, for this great team of doctors, nurses, specialists who are trying to take good care of her. We really want to trust God in this; it is hard to watch our girl like this, though. Please continue to pray for her!

We have already felt so encouraged and loved by the words of encouragement and prayer that have been pouring in.

Hopefully will get a chance to share more of how we are coping, processing and getting through this, but we just wanted to get the main details out so you are in the loop.

Thanks for partnering with us and walking through this with us through your prayers.

Even in darkness, we see Light. That is, there are moments, though sometimes brief, that we can say, “It is well with my soul.”

john and clarissa

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