The Stander (aka Medieval Torture device if you ask Noah)
Easter Sunday
Actually propping ON HIS OWN!
The Creepster Crawler (yes Noah, I am totally serious about this crawling thing!) ::smile::
Subscribe to:
Post Comments (Atom)
"Life has meaning only in the struggle. Triumph or defeat is in the hands of the Gods... So let us celebrate the struggle!" -Swahili Warrior Song
Noah and Mommy
Our Story
Noah was diagnosed with a sacrococcygeal teratoma at our 20 week sonogram. We had no idea what that meant and thanks to google we quickly learned WAY too much about them. It's a tumor originating from the tailbone. One referral turned into another and in a whirlwind we found ourselves in Philadelphia at Children's Hospital. After a day of tests we met with an amazing surgeon who recommended we stay there and let them monitor our son and his tumor. We flew back to KS, packed our car, grabbed our dog, and moved to Philly.
Twenty-seven weeks into my pregnancy Noah's tumor had increased in size, had a very rich blood supply, and started to put him into heart failure. They decided to deliver Noah to save his life. They saved him indeed. We spent the next 88 days in the NICU. We got there at 7 am and left at 11 pm everyday. We watched him undergo two more surgeries to remove the rest of the tumor including a part which had migrated into his spinal canal. We watched him intubated, CPAP'd, brady (all the time!), live in an incubator, grow, get blood transfusions, have multiple IVs, and so many other things you just never want your child to endure. He fought every step of the way like a champ (he is much stronger than I) and finally we were discharged! Life started for us. We moved to a new town, met new people, watched Noah thrive. He started getting PT and OT to help him catch up (he was three months early therefore three months behind when referring to his development and milestones). We found out he had a hearing impairment and CVI, but he is so strong. His feet don't move but his legs do. This summer he started having seizures. He was diagnosed with Infantile Spasms. It's a form of epilepsy which is considered catastrophic. I believe it. This is a story of our battle. This will be a story of triumph.
The Sweitzers
Noah
Before Seizures
After 2 months of Prednisone
Doctors and Therapists
Noah's Docs:
Dr. A : Our hero and Noah's surgeon
Dr. L : Neurologist
Dr. S : Neurosurgeon for spinal canal tumor resection
Dr. K : NeuroOncologist to stay on "Tumor Watch"
Dr. M: Opthamologist
Dr. R : ENT
Dr. Z : Geneticists
Dr. C : Urologist for his "Neurogenic" Bladder
Dr. Ped: Pediatrician
Dr. F: Neonatologist who tracks Noah's development
Ms A: Audiologist
Dr. Chiro: Noah's newest addition: Chiropractor
Queen of Keto: Leader of Noah's Ketogenic Diet Team
Therapy:
Ms PT: Physical therapy 2 hours a week
Ms OT: Occupational therapy 1 hour a week
Vision Guy: Vision therapy 1 hour a week
Oh my gosh! Remy had a creepster crawler too! He HATED it, but it really helped him. He didn't crawl on all fours until 23 months old. Then he walked at 26 months. It is amazing to see how they begin to put pieces together! He is so flipping adoreable! I totally want to kiss his cheekies! And those eyes...are you kidding me with those!?
ReplyDeleteThat is so awesome to see him standing--whether he likes it or not! They usually don't like things that are good for them. haha Can't wait to see you guys!!!! Love, Stacy
ReplyDeleteI have goose bumps looking at these pictures! You go Noah! Keep pushing, HE WILL DO IT!
ReplyDeleteAmy
I love the sight of Noah standing up! So glad your family will be there for the surgery. I'll be sending good thoughts. Miss you and love tons.
ReplyDeleteCindy
Wow! Noah is so equipment savvy. It is so exciting to see him moving right along. So glad the family is there with you today. I wish we all were. Love you and miss you so much.
ReplyDeleteThe PT push is inspiring; but, can I just add, that boy has mad fashion sense. So butch & cool at the same time. Love Noah's style...xoxo
ReplyDeleteWhat type of stander does he have in the picture and how tall is he? I really want to get my son a stander but the PT told me that the insurance company would not want to pay for it because he's too small right now.
ReplyDeleteIt's a Leckey Squiggles Stander. Noah is about 28" tall and weighs about 11 kilograms.
ReplyDelete