Brynlee

Nickname: Bryn
Birthday: 7/18/2013
Date of Decompression Surgery: 11/7/2014
Brynlee’s Facebook Page

If you would like to order a Brynlee Chiari Doll to help support the Little Warriors, send me an email!

An interview with Brynlee’s Mom

Favorites:

Brynlee loves the ocean. She also loves giraffes and the movie Tarzan. Like most kids she’s also pretty obsessed with frozen.

Special Moment:

This is a hard question to answer, because I feel like every moment with her is special. Every moment of everyday, I am so thankful to still have her. She brings so much love to everyone she meets. I remember after she had the surgery and we were still in the hospital, she looked so depressed and all I could do was hold her. I could hardly move or she would latch on to me and cry. I was so scared that maybe she would stay like this. I feared that she wouldn’t smile anymore. Our friends brought her sister Haven to visit, and as soon as Brynlee saw her “Sissy” she lit up. It was so amazing to see her smiling again. After a few days in the Hospital, they let us go home, even though we were scared to death. Brynlee was such a trooper. I told her we were going home, and she literally started dancing in her car-seat. I started crying and dancing with her, while her dad drove carefully home. That’s the amazing thing about Brynlee, even when she’s hurting inside she has an infectious smile on the outside.

Brynlee’s Chiari Malformation Story:

Our journey began on June 4th of 2014. It was a normal day. Bryn was napping a little longer than usual, so I went to check on her and her crib was shaking. She was having a seizure. I called her doctor, and they said if she has anymore to go to the hospital. A few hours after the first, she had another seizure so we went to the hospital.

After they ran all the usual tests they sent us home and scheduled an appointment with a neurologist. The neurologist scheduled an MRI. Because of how young Brynlee was/is, whenever she has an MRI done, they have to use anesthesia to keep her still. We got the MRI results back and the neurologist said she had Chiari Malformation type 1 . She said Brynlee’s herniation was 7 millimeters, and she would need to meet with a neurosurgeon to possibly have brain surgery.

Like any scared parents would, we started doing a ton of research. By the time we met with the neurosurgeon I had a list of Brynlee’s symptoms. The main symptom she had was really bad headaches where she would smack herself, scream, and bang her head on the floor and walls. The neurosurgeon ordered another MRI, this time to measure the CSF flow and to make sure nothing was wrong with her spine. At our follow-up appointment we were hoping to hear that somehow they were wrong, but of course that’s not what happened. Instead we were told that her brain needed more room, and that she had almost no flow of fluid because her brain was so compressed. Their suggestion was surgery as soon as possible.

Brynlee had decompression surgery on November 7th of 2014 she was 16 months old. She is now 18 moths old and doing better. Although she does have a headache here and there, her bad days are rare. Our journey however is not over, I (her mother) was also diagnosed with Chiari, and I am looking at having surgery.

Ways to Help:

If you feel called to help, Brynlee’s family has a campaign set up to help pay for medical expenses.

If you are a crochet artist or blogger that would like to get involved, send me an email!