Sunday I was at church, but very distracted. The only thing I remember from the entire sermon is the pastor asking if anyone in the congregation knew someone personally who had been the recipient of a truly miraculous healing. A few people raised their hands, someone near by even shared a story with me. My heart was full, I was so happy for them.
God is a God of Miracles. He is the same today, as he was in the Old Testament, the New Testament, and the same as he will be in the future.
“I am the Alpha and the Omega,” says the Lord God,
“who is and who was and who is to come, the Almighty.”
The day that Pouty had her 4 month well check, she had her first seizure. She was at daycare, and the phone call was chilling. Lena, Pouty has turned grey and is unresponsive. We have checked her vital signs. All are within normal range, but she is not responding. Come get her. (To this day, I have no idea why they didn’t call 911…)
I took her straight to her pediatrician who referred us to a wonderful neurologist. We went through a sleep deprived EEG, a 3 day EEG at the hospital, several MRIs, another hospitalization for RSV, and then a referral to neurosurgery at Duke Children’s Hospital.
Pouty was diagnosed with seizure disorder – not otherwise specified. She was having seizures, but never showed activity on EEG. However, what did show was that Pouty has a syrinx and possible chiari malformation. She still had good fluid flow, so there was no reason for surgery.
After about 18 months with no more seizures, we were able to wean her off of medicine. Another year or so and we moved to South Carolina. Pouty started seeing a neurologist and a neurosurgeon locally.
The neurosurgeon did another MRI, approximately 2 years after her last one at Duke. It showed that her syrinx had grown slightly, and that the chiari malformation was absolutely there. While sitting in the neurosurgeon’s office, she had a seizure. We had not seen seizure activity in 2+/- years, and then she had one in his office. So, off to the neurologist we went…
The first sleep deprived EEG here was a blessing. She finally actually showed one episode of seizure activity. Finally, I know I’m not losing it with regards to the seizures!
After starting Pouty back on seizure meds, and a couple of other specialist appointments, we went back to neurosurgery. The surgeon decided that he would rather wait and not do the decompression (posterior fossa) surgery at that time. Praise the Lord!!!
Recently, we started noticing more concerning symptoms.
Pouty is experiencing
- blurred vision
- her head is ‘rattling’ (her words)
- any time she starts focusing on fine motor activities she has shaking in her arms/hands
- she has some pretty serious issues with visual motor/memory/perception
- her arms fall asleep at odd times – whether using them or not
- she is having some body temperature regulation issues – she thinks she is burning up hot, but she feels cool to the touch
I called the neurologist, the neurologist called the neurosurgeon, they decided to do a stat MRI, and see what that showed. The neurologist told me that we had been avoiding surgery for nearly 6 years, but our time had probably come. The neurosurgeon called shortly after to confirm I had gotten the MRI time and also said the word surgery…I was braced for it, and as ready as a Mama can be…
So, we had the MRI. Pouty was brave, she went in with no anesthesia and did a magnificent job! We grabbed her some breakfast, and went straight to the neurosurgeon’s office. We waited, and waited, and waited….
Finally he came in and said, Why are you here? Tell me what’s going on because…. Well, why don’t you just tell me..
So, we gave him the run down and he said, Well, let me tell you what the MRI shows…
The MRI shows that her syrinx has shrunk, and her chiari malformation has completely disappeared.
Did you see that?
The chiari, the thing that would cause brain stem/spinal cord/skull surgery is GONE – DISAPPEARED!!!!
We do have referrals for an MRI of her brain, pediatric ophthalmology, and pediatric endocrinology. We are checking her eyes for her optic nerve – for pressure on the nerve, fluid around the nerve, etc – as well as to see if we can get any answers for the visual stuff we are dealing with. Endocrinology is to see if we are missing something with her endocrine system that would create the body temperature regulation issues, and the MRI of her brain is to see if we are missing something else. He now seems to think that the arm thing might be some sort of weird seizure activity.
God of Miracles
Now, if your preacher asks do you know anyone who has experienced a miraculous healing you can say, Yep, I sure do! A 5 year old was facing pretty serious surgery, but God removed her chiari malformation!!!!!
NOTE: I will delete any comments that start the vax/anti-vax debate. I have my opinions, and may or may not post about them at another time. Please, though, do not start the vax debate here. Thank you. <3 <3