It’s been difficult to figure out just how to write this update because we are trying so hard to keep our focus on the positive rather than the negative. So, let me start with the positives, because there are just so many!!! Oliver is 10 days away from being 4 months old! At our last appointment with the neurologists, they were both very impressed with his motor skills and muscle tone. He has improved immensely in this, and quickly, too. There are still certain delays, but at the rate he’s going, we believe he will be caught up to his age group in no time at all. We also had an appointment with Susan from Early Intervention and she was able to teach us some exercises that we can do to help him. We were all surprised that day at what he was capable of doing on his own with a bit of encouragement from us. I think it even surprised him a bit, too! This is one of the happiest babies I have ever been around. If he’s hungry, he will give a little fuss to make sure you know he wants you to go get that bottle started, but he just doesn’t cry. He is always ready and willing to offer a huge grin, and he’s just started that shy little smile that he hides behind his hands. He is happy to entertain himself, (if given the chance) and has recently discovered toys with noise are the best thing ever! He laughs out loud at things that sometimes we fail to see the humor in, but his laugh is so contagious and we crave it so much that we find ourselves in crazy contortions making obscene noises just to hear it one more time! That’s how we know the screams in the middle of the night are seizures. We have an appointment with the neurologists on Tuesday to possibly increase his Kepra medication for the seizures once again. He has sleeping days where he will sleep all day, waking only to tell us he’s hungry. This is also a sign of seizure activity or recovery from seizures. This new formula (the one that has to be special ordered through the hospital in Medford and shipped over here) is working out pretty well. He still has a bit of trouble keeping it down, but nothing like the others we’ve tried. His skin is looking so much clearer, too. When he does have a breakout day, Jazzy is grinding her own oatmeal for oatmeal baths for him – and it works wonders! Now for the updates on his Lumbar Puncture. The good/bad news is that most of the tests have come back normal. It’s good in that some of the scarier things they were looking for have been ruled out. It’s not good because we still don’t know anything, so more testing. Except for this one little amino acid deficiency…Asparagine. He is a few points under the lowest safe number. The problem is he is deficient in his brain, and due to what is known as the ‘brain barrier’, they have no way of getting it replaced. If it was in his body, they could replace it with supplements or food. As of yet, we have not had that much needed appointment with DR. Harding, our metabolic doctor who can hopefully explain all of the particulars to us. We are trying our best not to speculate, but when Google is so accessible, we find ourselves up late into the night, researching. Jazzy has actually been able to share some of her findings with the neurologists via MyChart. I realize that there are going to be naysayers out there, but I just have to put this out there. Because I witnessed it. I know what I heard and what I saw. This baby is one smart little dude. He said ‘Grandpa’. Okay, I’m sure I lost some of you with that one, but after about a half hour (or maybe 2 hours) of prompting for the last month (or three- who’s counting…), Grandpa finally got a true ‘G-g-grandpa’ out of the little guy…and Ollie knew it, too! The toothless grin that followed was unmistakably a show of pride! Now, we know he can say ‘Mama’, too, and he knows that we know, because we catch him mouthing it quietly to himself, but even at his sweet little age, he’s learning about control and manipulation. Please keep praying for Ollie! Thank you for loving our little guy. Thank you all for the wonderful Christmas gifts and cards: • A big huge shout out to Allan Lahr’s Seventh Day Adventist Church School for all of the wonderful and thoughtful gifts and cards that were sent with so much love! • Jenn Randles and her sister Julie for the post it note fundraiser • Pregnancy Care Center and Brettani Shannon for everything • Care boxes from Crystal Mohlsick and Marley Freeman • Mike and Michelle Carson for the wonderful dinner • Dinner gift certificate from Ron and Donna Peterson • The Sparrow Club Organization • Taprock and Elmers Restaurants If I left anyone out, I apologize, but know that you are all appreciated and loved! - Ollies Grandma, Lisa
Posted on: Sun, 11 Jan 2015 04:32:10 +0000
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