Well, today's visit did not provide much "new" information. We first met with the neurologist, a very kind, young specialist. After describing our past couple of episodes his first comment was, "well these are not typical seizures." We talked more about Jonah's history and he did agree that we could not rule out the possibility of seizures. Jonah's latest EEG was considered abnormal. The neurosurgeon said that even with Jonah's grade IV bleed at birth his brain should have shown more development and activity at this time than the EEG showed. He did say it was a tough call as this was his first EEG (so he did not know if this would be Jonah's baseline) but this did raise questions regarding possible seizures and their affect on Jonah's neurological situation. I guess this is not too surprising as Jonah did suffer the most severe brain bleed at birth, his brain activity will always be abnormal. However, for the specialist to even think that Jonah's EEG was on the abnormal side as the brain can rewire itself (called neuroplasticity) confirms worries I have been suffering from recently. Is Jonah making progress? Why so slow? It is heart wrenching to see the small progress that he makes and how much he struggles. Why are some other kiddos with grade 4 bleeds advancing quicker? Why does Jonah struggle so much? Maybe there is more to the picture then we understand. As follow up, the neurologist wanted us to first follow up with cardiology and after the 30-day monitor, if nothing was recorded of significance then we would schedule a 24-hour EEG with sleep time at the hospital. He did say that although abnormal the recent EEG did not show activity in the area of the brain that would cause epileptic episodes but that a better picture could be obtained by monitoring the brain for a 24-hour period that included sleep time as during sleep the brain is more likely to show epileptic activity if the individual is at risk for or will develop seizures.
After neurology, we met with cardiology. The wait was just awful (an hour) and Jonah had absolutely no patience. He had an early morning and was not able to sleep and is generally somewhat uncomfortable and impatient when in an environment that is not familiar to him. Unfortunately right now, this brings with it some awkward behaviors. Jonah's biggest issues right now when it comes to impatience, anger, or boredom are banging of the head or hitting himself with his right fist. *Sigh* It makes for quite a show, I am sure. I do try and stop this when possible but as with everything that has come before it takes time for him to grow out of it. I pray this happens and quickly. Anyways, finally we were able to get in and Jonah's King of Hearts was set up. He will wear two patches on his chest and be attached to a small box which records 30-second intervals of his heart rate (records and then replaces with a new recording). If Jonah goes in to an episode we press a button that records 60-second intervals and we can do this up to 3 times. Once completed, we have to get to a land line and call an 800 number to transfer the information to a data bank where they track the information to be given to the doctor at the end of the 30-day period.
After, Grandpa took us to Claim Jumpers. Yummy food! It was a nice break as Fresno has a Claim Jumpers and Bakersfield does not. Next, Grandpa drove home through the awful rain and we finally made it back to Bakersfield after 2:00 p.m. It was a long day but at least we accomplished a few things.
So this is our latest. We are all still trying to overcome colds. Noah ate awful today (his usual when he gets sick) but was still full of energy and running everywhere. Jonah has an awful, runny nose and lots of congestion. I am suffering from the same, plus coughing and a nasty sounding voice. Hopefully the worst is over! Too bad we are sending Grandpa and Grandma off with a round of illness here at the house. I hope they go home healthy (so far, so good).
Thanks everyone for your sweet comments and concerns. Keep praying for our babies, that is all we ask and is the most important thing that can be done.