Learn more about Frankie, an amazing warrior with cerebral palsy!
cerebral palsy | #CPawarenessmonth | #CPawareness | #morealikethandifferent | disability advocate | special needs parenting | inclusion | inclusion matters | esotropia | NICU | NICU warrior | hip dysplasia | strabismus
Read MoreLearn more about Lawson, an amazing warrior with cerebral palsy!
cerebral palsy | #CPawarenessmonth | #CPawareness | #morealikethandifferent | disability advocate | special needs | special needs family | special needs parenting | inclusion | inclusion matters | hypoxic ischemic encephalopathy | NICU | NICU warrior | brain injury | anoxia | global developmental delay | developmental delay | childhood sleep disorder | childhood epilepsy | epilepsy
Read MoreLearn more about Benson, an amazing warrior with a congenital disorder of glycosylation. CDG | microcephaly | NICU baby | NICU warrior | disability advocate | special needs | special needs family | special needs parenting | inclusion | inclusion matters |
Read MoreAt 20 weeks pregnant my world turned upside down. We got the news from our doctors that Paisley had a rare lethal form of dwarfism called Thanatophoric Dysplasia. Thanatophoric Dysplasia or TD for short is a severe skeletal disorder characterized by a disproportionately small ribcage, extremely short limbs and folds of extra skin on the arms and legs. The term Thanatophoric is greek for "death bearing". Children with this condition are usually stillborn or die shortly after birth from respiratory failure, however a small number of individuals have survived into childhood and a very few beyond. Survivors have difficulty breathing on their own and require respiratory support such as high flow oxygen through a cannula or ventilator support via tracheotomy.
Read MoreOn November 27th, 2018, my husband and I went in for my 22 week ultrasound. We went in so excited because we were finally finding out the gender and were planning a gender reveal party later that night with our friends and family. The tech wrote it on a paper and the nurse called my sister in law to let her know the gender (since she was the one making our cake pops for the reveal). Once the tech had written down the gender, we met with my doctor to discuss the ultrasound. The first thing he told us was, “We need to talk.”
Read MoreWhen my husband and I found out we were pregnant, we were so excited. We weren't exactly planning for a baby just yet, but we couldn't wait to be parents. I chose to take a blood test at 10 weeks to find out the gender, but we were surprised with much more. When the results came in at about 15 weeks, I got a call to come in to my OB’s office, and I did not like the tone of voice on the other end of the line. My husband and I reluctantly went to the appointment, expecting horrible news. We were told at first that it was Turner's syndrome, and then they thought it might be Trisomy 18 or Trisomy 21. I was crushed. What I took from our conversation was that we were not going to be able to keep our baby.
Read MoreOn April 9th, 2019, Sloan LouElla was born! After 9 years of marriage + fur-baby-parenting, we were adulting to our max capacity (joking, haha, does anybody actually do that?)...and we were excited for our little human-baby. We had prepared, prepared, and prepared. We started a ‘baby box’ in 2016 - just collecting little things for our future human while we were out traveling, shopping, etc - and we were ready for what we thought was going to be a very typical birth/baby experience. After an extremely intense, traumatic, beautiful, life-altering year - we’ve learned that while preparation is wonderful, some of the most amazing, life-altering experiences come from the moments you least expect.
Read MoreOn February 9, 2018 in the late evening and two weeks early - our second daughter, Bryn Ryan Cotant was born and then rushed to the NICU. We were only able to see her for 22 seconds, as she was born in stress with the softest cry and immediately passed over to be evaluated. After what felt like days, even though it was only a few hours, we were finally able to go see her. As my husband, Kris, and I took turns holding her, praying over her and loving on her, we, of course, could sense that things were not totally okay.
Read MoreIt took my husband and a I a little while to get pregnant. There is a history of PCOS in my family and I wasn’t spared. It took several combinations of medications to get us there in a little over a year with no shortage of tears and frustrations. On March 8, 2018 I got the faintest positive on a pregnancy test. A week later we went in for an ultrasound and our nurse gave us the shock of our lives: twins.
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