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Around 4 months of age we started noticing some problems with Milo's movement. He really didn't ever use his right arm. By 6 months, I had done enough research to be certain we were dealing with cerebral palsy. At this well child check I asked for neurology consult and PT referrals. Our wonderful practitioner was receptive and put in all these orders to take the best possible care of Milo.
We waited about 2 months to see a pediatric neurologist at Gillette. While waiting, Milo started physical therapy twice a week. December 10th we finally saw a pediatric neurologist. She confirmed that she also believed Milo may have cerebral palsy, from either a congenital brain malformation or more likely from an interuterine stroke. MRI was ordered for the next week.
Milo did great for his first sedated MRI. We went immediately after to see the pediatric neurologist to review these images. We were devastated to find out that Milo has a congenital brain malformation called a neuronal migration disorder. This puts Milo at high risk for seizures and cognitive delays. Also, there was some noted abnormalities with the vasculature on that side of his brain. A repeat MRI (MRA/mrv) was discussed for 6 months out.
About a month later I got a call from the pediatric neurologist stating they weren't certain we had to do this MRA/MRV. She explained that the radiologist said this is an expected finding in 10% of the cases with this brain malformation. She left the ball in our court at this time.
As we milled this over the following couple weeks it didn't all make sense to us. We couldn't understand the reasoning not to do it. Just because it is expected, that doesn't remove the risk (aneurysm). Thankfully, Russ' cousin, Dena, works with some wonderful providers who agreed to look at Milo's MRI. We are so thankful to Dena and those providers who may have saved his life.
The very next day they came back with findings missed by Gillette. A direct fistula from the left anterior cerebral artery to the venous system. This was very scary and immediately the next morning we started trying to get ahold of Milo's neurologist.
A day later Milo's neurologist returned my call and apologized they didn't see this fistula. She sent the images over to a pediatric neurosurgeon. His recommendations were MRA/MRV and an appt with him asap.
This brings us to today. Milo had an mri (mra/mrv) this morning. Again, he did an awesome job and Gillette took great care of him. We then met with the pediatric neurosurgeon who wasn’t able to give us a whole lot more information except for that Milo will need a catheter angiogram at this point. He is working with the interventional neuroradiologist to determine when this would best be done and have the least risk. He threw around the idea of when Milo is 1, which is in April. This angiogram will determine definitively which kind of brain surgery Milo needs. One option is done through a catheter inserted at the leg and run up to his brain and the other surgery opens his head up completely.
We need prayers. Prayers for clarity. Prayers for safety. Prayers for those who will work on Milo. And of course, prayers for sanity.
We are heartbroken for Milo but know he is in the hands of a father who loves him more than we ever could.
We will continue to update this page as we know more.