Welcome to Sunshine and Spoons! This is a place where you can learn more about living with or caring for someone with medical or special needs, find parenting stories and tips, share your story, and more.
Welcome to Sunshine and Spoons! I'm Hannah, a mom of four who loves Jesus, reading, writing, sewing, and chai lattes. I used to blog at Supermommy!...Or Not, but this is my new blog home. I own the Sunshine and Spoons Shop and love designing new things for it. After a lifetime of looking for answers, I was diagnosed with Hypermobility Type Ehlers Danlos Syndrome in June, 2016. I also have asthma, eczema, acid reflux disease, POTS, vocal cord dysfunction, Eosinophilic Esophagitis, and PTSD.
Hubby is my wonderful husband who works hard at his full-time job. He also farms full-time with his dad and brother on his dad's farm. His interests include tractors, tractors, and tractors-all green of course. We're a John Deere family!
Katie is our oldest child. She's 11 years old and a sweet girl who loves to mother her younger siblings, even when they don't appreciate it. She wants to be a mommy and a horse trainer when she grows up. She has been diagnosed with asthma, a visual tracking disorder, and Ehlers Danlos Syndrome.
Nano is 8 years old and a little character. He wants to be a farmer and a pastor when he grows up. He is our class clown, but is also very sensitive to what others need. He has eczema, asthma, and Ehlers Danlos Syndrome.
Anna is 6 years old and a little firecracker who always has a mischievous twinkle in her eye. She was our little surprise when she was born as we'd been told by 2 different ultrasound techs that we were having a boy. She has kept us on our toes ever since then! Anna has Ehlers Danlos Syndrome and amblyopia and wears glasses to correct her lazy eye.
Davy is 5 years old and is a sweet, cuddly little guy who loves his mama. He has had a multitude of medical issues since birth and had to have a G Tube placed at 2 months of age because he was not able to eat. We were able to take his feeding tube out on September 29, 2015 at the age of 18 months old because he was finally eating 100% by mouth. He has Ehlers Danlos Syndrome, tracheomalacia, GERD, asthma, eczema, mild developmental delays, hypotonia, and failure to thrive.
As I said before, I spent my whole life looking for answers to my health problems. Growing up, I had a lot of pain that was dismissed as growing pains. I also had a sensitivity to heat and sunlight, GI issues, chronic fatigue, hypermobility, joint pain, muscle pain and spasms, nausea, dizziness, and more. All of those symptoms worsened as I got older, and especially with each of my four pregnancies. When Davy was born with his many medical issues, I put all of my energy and effort into finding a diagnosis for him and giving him the best care possible. We started out at one health care system that was unable and unwilling to do much for him or look for answers, so after much frustration, we switched his care over to a different health system that was twice as far from our home. The 1 1/2 hour drive was worth it. His new specialists work together as a team, and his geneticist took on Davy's primary care for the first year we were there. Within a short time, we were getting answers, and Davy was improving. In mid 2015, his geneticist diagnosed him with an unspecified connective tissue disorder and began running genetic tests to determine which one. As test after test came back negative, we became discouraged. Then, I posted a picture of Davy's hypermobile ankle on Instagram, and someone asked if he had Ehlers Danlos Syndrome. I immediately began researching it and realized that not only did he have just about every symptom, Nano, Katie, and I did as well. In March 2016, I took Davy in for his genetic appointment and mentioned Ehlers Danlos to his geneticist. I showed her my list of symptoms and it was like a lightbulb went on in the room. In June, 2016, Nano and I were formally diagnosed with Ehlers Danlos Syndrome, and Katie was diagnosed in July. Anna seems to be the most mildly affected and was diagnosed in the fall of 2018. Not only will my children's early diagnoses benefit them as we can begin preventative care, but I felt like my entire life had been validated by my diagnosis.
Thank you for joining me here! I hope that this blog can help you in some way!
I loved reading that your husbands interest is Tractors, Tractors and More Tractors. We live in tract housing and my husband still dreams of owning a green tractor... He is 78...
ReplyDeleteThere's still hope! My husband's grandpa was still farming well into his 80's :)
DeleteI just read your comments and found your blog through my page The Zippy Zebra. I would love to have you join our Sharing Sunday link ups each week. I host a link up specifically to provide encouragement and ideas for those with chronic illness.
ReplyDeleteNew links can be added Sunday -Friday with a new link up beginning every Sunday at 8:00am I can't wait to see what you share!
You have VCD?! I do too! When I was finishing sixth grade I got a strange virus that messed everything up and made me have very severe VCD and Vocal Cord Paralysis, and I had stridor (noisy breathing) all the time, and nearly got a tracheostomy tube. It also messed up and eradicated my sense of taste and smell. The VCP went mostly away now, but I still have VCD and the stridor turned into a vocal tic that's managed by medication
ReplyDeleteIt's nice to meet you, Max! VCD is one of those things that most people haven't even heard of!
DeleteHello! I didn't know about it until I was
DeleteDiagnosed with it in 2013!
Hi, I wondered if you were also autistic?
ReplyDeleteI had a late ASD diagnosis and all these things (especially EDS) commonly come as autism co-morbids. Females with ASDs are commonly misdiagnosed or late-diagnosed and it's only recently that good resources exist for understanding autistic females without co-morbid intellectual disabilities. Might be worth looking into it if you haven't already?
I have not been diagnosed with ASD, but I do suspect that two of my children and I might have SPD.
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