Finally, after all these months post his week long stay at Phoenix Children’s back in Feb, we met with the neurologist. Ty’s headaches have been regular (2 times a week or so) but I rarely have to treat him with the coke/migraine cocktail because he gets through them okay without much complaint. His pain tolerance is very high so it is always tough to really know. The coke incentive doesn’t help matters either. In fact, all my kids have regularly come down with strange occurrences of “headeggs” (that is what they all call them). The Dr. I saw last month explained the MRI results to me and I wrote about that but a picture is worth a thousand words.
Sometimes miracles do hide! I think this is amazing. According to the neuro, she would have identified Ty as being a baby born very prematurely (under 28 weeks) by just looking at this MRI because only extremely premature babies have under developed (pancaked) cerebellums that look like this. Jump down to my yellow highlights on the second picture and I will explain.
Can you see here how the right (picture left) side of the cerebellum is completely under developed compared to the left side (picture right)? The cerebellum is responsible for several functions of the body including: fine movement coordination, balance and equilibrium, and muscle tone. Ahhhhhh! Now that makes sense doesn’t it (in regards to some of Ty’s struggles)? The brain is so cool. I think it is really neat to be able to see for myself, the answer to some of our “whys”. Why did I have Ty in OT for over a year and he still can only write his name? Well…folks…I am now grateful that his fine motor skills are as good as they are considering half his cerebellum is essentially missing! Unlike other parts of the brain, the right side of the cerebellum directly relates to the right side of the body. This explains why I have been thinking that Ty actually does better with his left hand. His whole right side is weaker than his left, but not nearly as significantly as you would think based on this picture.
In fact, the Dr. kept commenting over and over how totally amazed she was at all Ty CAN do. She kept doing muscle and coordination testing and I could tell she was fascinated by what she saw in this picture and what she saw Ty actually do. In addition to the cerebellum issue, there is also the swollen ventricle issue. I have explained this before but no one will remember so I’ll give it another go here. The reason the neonatologists predicted Ty to have some “quality of life” issues was due to his grade 4 right, grade 2 left, intraventricular hemorrhages. Sometimes those ventricles bleed out when babies are born very early. Grade 4 is the worst. In fact, two grade 4 bleeds are considered catastrophic and often result in death and Ty was at one time labeled a 4 right, 3 left. The brain does not allow for dead space. When Ty’s ventricles filled with blood shortly after birth, the swelling killed off surrounding brain tissue. The brain does not allow for dead space, therefore the ventricles (though the bleeds resolved) never resumed their pre-bleed size. I wish I had a comparison of what normal 9 year old ventricles would look like but I couldn’t find that. All the MRI images I found on the web were of different views (slices) so it wasn’t orange to orange comparisons. At any rate, it has been explained to me many times that those ventricles I circled above are bigger than they should be which means the brain has been killed in the areas of their enlargement. This is how Ty got a PVL (periventricularleukamalacia) diagnosis. Can you believe I can spell that? Years of practice.
Amazing isn’t it? Someone at the Dr.s office called me on my cell yesterday to cancel an appointment and even SHE knew who Ty was and had talked with the Dr. about this MRI because she was going on and on about how impressed the Dr. was with Ty. If you are looking for a good neuro at PCH, I really like Dr. Lewis a lot.
No real reason to follow up with neurology for now unless his migraines return with a vengeance. I hope not. His Daddy is having a heck of a time with them this season. No fun.
In preparation for school to start in a few weeks, our littlest has made it a habit to go around waking up his siblings at 7:00 AM. I hear this loud “Hiiiiiiiiiiiiiiiii” and next thing I know, at least 3 of them are cuddled up on the couch watching cartoons. I love seeing Troy with his pacy, sitting on Tori’s lap or cuddling with her at night or in the early morning. So precious. He has also woke up, crawled into his high chair, and called me out of bed to come serve him breakfast. Those mornings are SUPER cool. Ty found him asleep beside him one day this week and had no idea how long Troy had slept in his bed with him. Troy has turned into this lovely little morning person now that he is in control of his schedule. Awesome.