Monday, April 11, 2016

How It All Began...


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.

I'm Hannah, a mom of four who loves Jesus, reading, writing, sewing, and chocolate.  I used to blog at Supermommy!...Or Not, but this is my new blog home.  I own Annalie's Baby Boutique, an online children's boutique.  After a lifetime of looking for answers, I was diagnosed with Ehlers Danlos Syndrome in March, 2016.  I also have severe asthma, eczema, acid reflux disease, vocal cord dysfunction, 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 8 years old and a sweet little 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.  We are not sure if she has Ehlers Danlos Syndrome yet, but will hopefully find out soon.



Nano is 6 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 ezcema and has not been officially diagnosed with Ehlers Danlos, but we know he has it.



Anna is 3 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!  She always has a smile on her face and can usually be found getting into something.



Davy is 2 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 would not eat.  We were able to take his feeding tube out on September 29, 2015 because he was eating 100% by mouth.  He has Ehlers Danlos Syndrome, tracheomalacia, GERD, asthma, eczema, devlelopmental delays, hypotonia, and failure to thrive.  He wears Sure Step AFOs to correct the pronation of his feet and gets physical and occupational therapy.     



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 pregnancy.  When Davy was born with 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 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.  She informally diagnosed us both with Ehlers Danlos Syndrome and set up half a clinic day to do an in-depth examination on me and my three other children in June, 2016.  Not only will my childrens' early diagnoses benefit them as we can begin preventative care, but I felt like my entire life had been validated by my diagnosis.  I left the appointment with a huge weight lifted from my shoulders.

You can learn more about Ehlers Danlos Syndrome here.

Thank you for joining me here!  I hope that this blog can help you in some way!