CHOO CHOO! Look who's 2! 🎉(Yesterday...definitely a 3rd kid.🤦🏼♀️)
This sweet boy is as happy as ever and has come so far since those scary and stressful days in the NICU at 2 different hospitals trying to figure out a rare condition not many doctors really understand. A lot of his progress is thanks to 'Team Robbie', a HUGE group that includes:
-My fertility dr and the surgery she performed, and the meds I took for a solid year after we had already been struggling for a while. (The almost 5 year age gap was not intentional, but having the older 2 being more independent has been a lifesaver.)
-My OB/GYN who managed my 3rd high risk pregnancy, cried tears of relief with me after my miscarriage scare, and helped me through a cerclage, awful bulging vericose veins, an excruciating blood clot despite daily blood thinner injections, a hernia, contractions starting at 23 weeks, bedrest, and an eventful C-section and the physical/emotional recovery. He helped take away the initial guilt I had wondering if Robbie's condition was because of something I did wrong during pregnancy. He's also the first person to recommend going to Scottish Rite Hospital for Robbie's care. I thank my lucky stars for Scottish Rite. They have been such a blessing for so many reasons.
-The Scottish Rite Lower Extremity Dr who did weekly serial casting, open reduction surgery on both of his congenitally dislocated knees, and oversaw his leg braces. And ordered an ultrasound to rule out pyloric stenosis after he kept throwing up so much at the weekly appointments and wasn’t gaining weight.
-The Scottish Rite brace maker who designed and made all the leg braces he used.
-The Scottish Rite Upper Extremity Dr who ruled out all the previous diagnosis theories that were thrown at us and landed on the diagnosis of Arthrogryposis, specifically Amyoplasia, and monitored his needs. Dr. Oishi is going ahead with wrist tendon transfer surgery on Friday.
-The Scottish Rite OT who makes his elbow and wrist braces.
-The Scottish Rite, Cook's, and ECI GI/Dieticians that have monitored food and weight gain.
-The Scottish Rite and ECI SLPs who have been doing feeding evaluations/swallow studies.
-The Scottish Rite and Cook's Neurologists who ordered brain and spine MRIs and found his borderline Chiari Malformation and other incidental abnormalities, and ruled out a tethered spinal cord.
-The Scottish Rite dentist who is monitoring his teeth and high palate.
-The Scottish Rite Pediatric Developmental Delays Pediatrician at the Rainbow Clinic who is overseeing care and needs.
-The Cooks Pediatric surgery team for saving Robbie's life by doing his 1st surgery and putting in a G-tube and Nissen at 3 months old so he could eat and not throw up 15-20 times anymore and start gaining weight. They discovered he was silently aspirating and it wasn't safe for him to swallow. For a while had to give him Cuvposa to decrease his saliva because he couldn't even manage that without it going to his lungs.
-The ENT who did a video probe and discovered his heavy breathing is due to laryngomalacia and he had angry red bumps in his throat from severe reflux even a few months after G-tube and Nissen surgery.
-The Cook’s Urologists that corrected his hypospadias. I wish it wouldn't have taken 2 surgeries, but it's done.
-The Cook’s geneticist that ran extensive tests that came up with zero findings, meaning his rare condition will not be passed to his children, as far as they know.
-The Cook’s Cardiologist that monitored his heart anomalies that have since resolved themselves.
-The Cook’s Audiologist that ruled out hearing loss contributing to his speech delay.
-The Cook’s NEST clinic that has overseen post-NICU progress.
-The ECI PT who has come to our house every week for therapy, and also traveled to a few Scottish Rite Lower and Upper Extremity appointments to meet his doctors and coordinate the best treatment options. She has also come when Autrey could be there so they could communicate in PT language without me losing something in translation. (It’s like a game of Telephone since sleep deprivation and stress have destroyed my short term memory and critical thinking skills.) She has brought us 4 different gait trainers/walkers and various other toys and equipment to borrow. She is the one that is trying to get Robbie into horse therapy this spring. Martha is basically part of our family now.
-The SLP at Children's Health who started seeing Robbie recently for speech therapy. (The evaluation for adding weekly feeding therapy is in April).
-Our Pediatrician who helps keep him healthy and is always willing to make referrals. This list shows just how many there have been.
-Our NISD Parents as Teachers Educator who comes every month to help with learning and developmental goals. We're pretty sure Robbie is secretly Lori Leuty Hogue's favorite child she sees. And we adore her.
-The Early Wheels program that gave us the free power chair to help facilitate motor independence. Robbie doesn't like it when it moves so it isn't being used like we had hoped (yet), but we are grateful for it just the same.
-The TWU Kinesioloy Dept for the adaptive swimming program that allows Robbie to have free water therapy on Fridays during the semester.
-National Seating and Mobility for working with our insurance and getting Robbie his own amazing gait trainer before the end of the year.
-Cindy Lemon for being Robbie's Nursery Buddy at church for 6 months so I could go to Relief Society and have uninterrupted adult time. Now that I, myself, am the music leader in Nursery I realize how precious that time was. Also, the day she walked over to my house to eagerly learn how to use his feeding pump so she could watch him occasionally was a turning point for me. Oh, how I miss the Lemon family living in Texas.
-My mom, and Robbie's birthday twin, Sherrie-Kaye Holdaway. She has flown out for each of Robbie's surgeries and made his recoveries easier on everyone in our family. Dare I say enjoyable, even. This Friday will be surgery #5. And David Miller for being able to hold the fort down at home, despite being legally blind, and being willing to sacrifice his time with and assistance from his other half.
-Last, but not least, our amazing family and friends and ANYONE that has loved us, supported us, prayed for us, served us, checked in on us, laughed/cried/cheered with us through the highs and lows of this journey to where we are now. We are forever grateful to have you on our team!
Happy birthday, little caboose! You are so loved and we are grateful to have you in our family! #Arthrogryposis #AMCstrong #differentnotless #onwardandupward #2yearsold
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