Benzen passed the second half of his BAER hearing test and also his eye exam from an infant ophthalmologist. That was all great news. Shortly after that the neurologists let us know that he was reviewing the MRI again and judging by what he see's he is 70-80% sure Benzen will suffer from some sort of hearing loss (how will we know if that is just not inherited from his Papa Bummer?). Most of you know that Amy is a speech therapist and knows all the great audiologists in the area. Thanks for your help so far Julie. They will monitor him closely and we will be prepared for what ever happens. He also said some of the findings on the MRI were signs of Cerebral Palsy and possible future seizures. We are still cautiously optimistic he will have mild cases of what ever he may develop. We had a new nurse today, and she told me some interesting facts. She said in other infants she has cared for with abnormal MRI's and neurological disorders that they show signs like continuously smacking their gums, continuously swinging an arm, or continuously kicking a leg. Benzen does not do any of those. Which seems like good news. His biliruban did go back up, so they put him under the lights again all day today. I would think he will be done with the lights for good tomorrow. Although, he loves the lights and just chills out and relaxes as you can see from his above picture.
The other picture above are drawings from Zae Zae Bolyard, Harlie Hensley, Sadie Walters, and Mei-Lyn Walters. Also, in there is the count down calendar made by my sister Ashley. Benzen loves his new artwork. I still cannot believe all the of the stuff Betsy is sending up to the hospital from all of you! Thank you all very much! In the Jewish faith this would be called a "Mitzvah" (A moral deed performed as a religious duty. As such, the term mitzvah has also come to express an act of human kindness.) This will be repaid to you many times over in Heaven.
Thats pretty much it today. Nothing sappy and sad. I hope you all have a great day today since it is after midnight.
Ben
Good morning Little Remer Family! I'm late this morning because I'm a second shifter today. Passed out Benzen's blogspot yesterday at staff meeting and was surprised but pleased that alot of them have been following you folks every day too! That is one great thing about working in a small and local business. We can talk about things and everyone is like "we know who you are talking about and this is what we can add to the story" . Small towns get a bad rap about gossip, but they are great when it comes to caring. Between Liberty Center and Swanton the prayer chain is enormous! Welcome Benzen's to. The family of hearing loss! It has it's benefits. I never appreciated how peaceful my world was until I got hearing aids. Just want you to know, hearing isn't always what it's cracked up to be, can I hear an "Amen" to that? Also, love the pictures, especially the one from Harlie Girl ( think I'm prejudice?) I showed her Bumpa and his response was "Looks like a tick on someone's head". Classic Rob. And the Juliemyou refer to, I think I know her. Use to work with her mom and her a very long time ago. She's a great kid (woman now I guess) tell her I said "hi". I'm getting as winded as Ben, take care.
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Josie
Dear Remer family the bolyard's pray for all of you everyday. We know from our own experience how hard it is to listen to all the percentages and predictions of what to expect from a child that you love so dearly. Just remember these are just educated gueses. No one but God knows what lies ahead for your little Benzen. We were told horrific things about Ty, he woould not walk, he would not talk, he could not hear, he would not breath and probably would not live past one. Many of your family knows that Ty does do all of those things and more and he is an absolute joy to be around, well as best a 15 year old can be!!! God Bless, live each day one at a time and hold great joy for each and every breath that he takes.
ReplyDeleteBen,
ReplyDeleteWhen your title showed up for today's entry I immediately had tears in my eyes. First, I had no idea you would even have remembered that mantra I like to live by. Secondly, this is so fitting for Benzen. We, and I say we because you and Amy aren't alone, are going with Benzen on this journey and by know means is this his destination. He is going to know what love is (lol) like he doesn't already but that his life will be filled with so much of it and by so many people. His journey has just begun and I am so proud, so happy, so excited to be a part of it. We are all waiting on baited breathe to see what Benzen is going to teach us next that will help us all on our journey. We all love you and your nephews adore you and can't wait to play with Benzen. Now let's get started on this journey!!