Posts By Haveyroo

HaveyrooMy name is Misty Fowler. I am a wife of 9 years and a mother to a 6 year old with Ganglioneuroblastoma Cancer and ROHHAD Syndrome. I work for a sport clothing apparel company. I currently work to learn more about my daughter's rare diseases and take pride in nurturing my family.

Growth Hormone Deficiency

Growth Hormone Deficiency (GHD) is generally due to the pituitary gland being unable to produce sufficient GH to generate the growth process. GHD does not affect intrauterine growth, at least to an extent measurable by birth weight or length, but from the second year of life growth is slower than normal, and occasionally growth failure…
CONTINUE READING

Asperger’s Syndrome and Kennedy Krieger Institute

On June 2nd, we spent the day with a NeuroPsychologist at Kennedy Krieger Institute.   KKI is an internationally recognized institution which helps children with developmental disabilities.  They have a high focus on brain, spinal cord, and musculoskeletal related disorders.  We have been there a couple times before but have not met with this department. …
CONTINUE READING

Endocrine Visit – June 20

On June 20th, we took Haven in to meet with her Endocrine doctor – he was the doctor that saved her life by finding her cancer and diagnosing her with ROHHAD Syndrome.  My main concerns have been Haven’s weight to height ratio and the fact that I knew she hadn’t grown much over the past…
CONTINUE READING

Physical Therapy

Haven has done an AMAZING job at her physical therapy. She goes every Monday and Wednesday for one hour. Her therapist is great with her, and Haven has grown really attached to her. Every visit, they decide what color they are going to wear next so they can match.
CONTINUE READING

Gettysburg Civil War Expedition

Memorial weekend we went to Gettysburg. On the way there, we stopped at Cunningham Falls State Park. We only planned to stop here for a few minutes, and we spent about 2 hours. Outside, we could see the owls and other birds. Inside, we were able to read about the origins of the park.
CONTINUE READING

Time in the garden

Haven LOVES to garden! So after numerous times asking us if she can have her own garden of peppers and tomatoes, we said yes. So we built the garden and she planted the peppers, beans, onions, and tomatoes. She really wanted to plant an avocado tree, but they just don’t work in MD. The two…
CONTINUE READING

Spring round of IVIG

After Grandma and Grandpa left, we had a day of chemo. Haven has started to not want to see the needle to go in to her chest. She uses a 1 inch needle and her numbing cream. Since doing her Hi CY, she has begun to feel a little bit of pain. Not much, but…
CONTINUE READING

Grandma and Grandpa Virginia visit!!!

In May, Grandma and Grandpa came to visit from Virginia. Of course, there is always lots and lots of reading to do. Haven will read for hours non-stop. Grandma and Grandpa set up a date for them and Haven over the weekend. They got dressed up in their best outfits…
CONTINUE READING

Birthday Celebration

Haven was so excited to get to go to her friend’s birthday party. Mia is her best friend at school. She absolutely loves Mia. This was a cool birthday though, because it celebrated Mia’s birthday and her sister Natalia’s birthday. One of our other good friends Rachel – her birthday is next!!! The birthday party…
CONTINUE READING

Another Angel Welcomed by our ROHHAD Children

In January, I told the world about Heather, who after 18 years of searching, was finally diagnosed with ROHHAD after seeing Haven’s special on Mystery Diagnosis. On Friday, May 27th, Heather passed away, leaving us with a void in our hearts but strength knowing another angel is watching over all of our babies. We are…
CONTINUE READING




×