Today Haddie had her EEG in Akron at 7 am. That took about an hour and then we went to see the neurosurgeon while we waited on the results. Dr.Chen is happy with Haddie's shunt. Everything seems to be going pretty well there. So well in fact that we don't have to come back and see her for 3 months.
We then went in to see the neurologist, Dr Enlow, to discuss the results of the EEG. The good news is that there is constant brain activity. Praise God for that. The last one they did in September seemed to show some activity and then no activity. Today is was a constant stream of activity...which is a great thing.
The not so good news is that a few of the lines on the EEG are pointing to a disorder that we don't want. He said that she could be headed toward "Infantile Spasms". I could try and explain but this definition would work better: An infantile spasm is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves). The onset of infantile spasms is usually in the first year of life, typically between 4-8 months.
So it is definitely not something we want. "Developmental regression" is not at all what we want. He is not sure about this though. Haddie is not really showing any physical signs of an infant with the spasms. She has no visible seizure activity. So it might be West Syndrome or maybe not. If it is, the only thing they can do is treat it with strong medication that has some very serious side effects. He wants us to come back Feb 10th to do the test again. He said that hopefully the test would reveal that those chaotic waves are going away.
So here we are again. We are trying to stay positive. And we are. I'm fairly confident that she doesn't have that disorder. But the possibility of it certainly steals your breath like the temperature of today's air.
God is good. Always has been, always will. We trust that He has a plan for Hadassah. We ask you to pray that this isn't West Syndrome. We are so excited and proud about the progress Haddie has made...it would be very tough to see her go backwards again.
Love you all and hope you have a great week. Stay warm!
Travis + family,
ReplyDeleteI and my entire ministry school here in Cleveland are joining with all of heaven in declaration that Haddie be made whole from head to toe, beginning with the Dr's report that she does NOT have the disorder. also praying for the strength, rest and joy of Papa God to overflow onto you all. Know that so much love is covering you all and lifting you up. Blessings!
Caroline Paige Lohrey
The Monnettes will be praying for a negative result on Feb 10. We were so excited to finally get to meet her on Sunday. She is beautiful and we love that she has the same hairstyle as Grandpa Kevin! She is such a miracle and a reminder to us all of just how amazing our God is!
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