"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
Saturday, September 19, 2009
Yesterday was just tough. Noah doesn't want to eat (he eats but he can't keep it down). He actually spit up 10 oz yesterday! Argh! (He only gets 24 1/2 oz per day) He had a few seizures that just went on and on and on. I had the rescue valum out and was so close to using it. Such a judgement call...I hate it. So between changing my clothes, his clothes, and bed clothes multiple times I tried to clean up a little. Somedays it's just futile to even try to do anything else but count seizures, feed and re-feed that little boy! AND he needs a bath! Didn't get to that either.
Here's hoping today is easier for him.
Happy Birthday to Daddy!
Hope all my LC friends are enjoying the wine fest! Wish I was there with you...
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.
After 2 months of Prednisone
Doctors and Therapists
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