For my own benefit and for those who missed the start of Tori’s story, here is a brief timeline of what happened.
Krabbe works very quickly. As we look back, we see more signs of the disease that happened earlier, but we just didn’t know at the time.
Lesson learned: if your child is not reaching milestones, it doesn’t hurt to ask their doctor. Yes, there are age ranges, but it doesn’t hurt.
December 30, 2014 – Tori turns 5 months old. She still hates tummy time. She starts wanting to eat more frequently.
January 6, 2015 – last picture of Tori smiling is taken.
January 7 – Tori’s demeanor begins to change and she becomes more irritable; she also begins regressing in the areas of talking, smiling, playing with toys, etc. very rapidly. She throws up more frequently. She only wants to be held.
January 14 – appointment with pediatrician where reflux diagnosis is given. All symptoms align with reflux.
January 15 – upper GI X-ray to check on the intestines and bowels. All is clear.
January 21 – day 7 of reflux medicine with no improvement. Lesa calls doctor again.
January 29 – another visit to pediatrician; fluid in head is suspected, mri scheduled for May 6. Doctor says she is in pain and wonders if it is migraines.
January 30 – Tori turns 6 months old. She doesn’t eat well that day, so pediatrician suggests going to ER at Hershey Med to try to push for an mri. We spend 3.5 hours there and a CT scan is performed. Brain abnormalities are observed.
February 3 – neurosurgeon appointment. He pushes for mri to be done the next day and succeeds. He is concerned about ct scan results and her developmental regression.
February 4 – MRI performed. Neurosurgeon calls that afternoon to give us results.
February 5 – Tori has shots and we show pediatrician the MRI. He tells us to try to give her coconut milk to get fat into her body because her body is clearly not absorbing fat.
February 6 – meet with neurologist and she tells us that it appears to be a form of Leukodystrophy. Tori does not eat all day, and was dehydrated, so she was admitted to Hershey Med for a feeding tube.
February 6-11 – in the hospital. Tons of tests done, including a swallow study. Test showed that she is aspirating while eating, so the NG tube is going to stay. Blood work is drawn for Tori to determine which leukodystrophy she has.
February 13 – neurologist calls and asks us to come in for results. Krabbe Disease. Our world is turned upside-down. That evening, another Krabbe family puts us in touch with Dr. Escolar in Pittsburgh.
February 16 – Dr. Escolar asks us to come to Pittsburgh to see how far the disease has progressed to see if Tori is a stem-cell transplant candidate.
February 17-21 – Lesa, Tori, and lesa’s parents take the train to Pittsburgh and back. Many tests are performed and it is determined that Tori is already in stage 3. Not a stem-cell candidate.
February 27 – appointment with pediatric surgery to discuss G-tube surgery and the Nissen procedure, and appointment with the Hummingbird Program to start discussing comfort care and other ways they can support us through this process.
March 2 – Lesa and Brennan decide that it is best for Tori to have both the G-Tube and the Nissen. Surgery is scheduled for March 23.
March 4 – Early Intervention comes to meet Tori and Lesa and to gather information. First evaluation is scheduled.
On March 23, she will have her G-tube and Nissen procedures and we will be in the hospital for at least a couple of days.