We haven't posted a medical update in a while, because things change so rapidly around here we'd be editing it non-stop. Oliver goes through phases in a matter of days. It is as if his ability to tap into the artistic or athletic areas of his brain come and go. One day he'll wake up with a little Picasso (thank God we are through the Poocaso phase) or little Michael Jordan and then poof, it is gone. His newest obsession is the swimming pool...so we'll see if we can hang onto that one for the summer.
|In his artist phase|
The awesome news is Oliver is doing well developmentally, drinking out of his sippy cup, enjoying sidewalk chalk, sometimes feeding himself, sometimes using the potty, most of the time sleeping through the night. He is still struggling significantly with his GI issues and his pain. There are often a string of days where his pain is controlled and he is more comfortable...but there are strings of very difficult days.
The seizures are still well controlled, but we have seen a handful of breakthrough ones in the past month or so. They are insignificant enough that we are not too worried. (I can't even believe I wrote that sentence)? Praise the Lord!
|He L.O.V. E.S a joyride!|
His weight has gotten back over the 60lbs mark, but some days it is impossible (with the pain) to get him enough calories. The palliative care team at UNC reminds us to take it day by day. It appears that we are trending in the right direction, it has just been a slow process. We are also getting better at juggling feeding by mouth along with G-tube feedings, and how to use those in harmony with one another. When he is able to eat, he is still a big fan of cheeseburgers, pizza, cookies, cake and Cheetos...just like any 8 year old kid. Oh, and don't forget the Uncrustables, which he discovered while we were in the hospital...those are his favorite.
|Loves his papa too|
We feel grateful we have avoided the hospital and have managed a very complicated level of care at home! We have times of deep connection with him, but Autism is always a part of our life. Oliver has been so medically sick that I have written very little about his Autism, but he certainly is on the spectrum. The lack of speaking and connecting sometimes make our heart break the most. My heart is both worn out from the sadness and rock solid strong all at once. My ability to compartmentalize and carry on in the midst of insane situations has grown and grown. I can clean up a hazmat level situation that would make most people run away, and then throw on a blazer to run and it is not even a big deal anymore. You gotta do what you gotta do! This is proof to me that we are all capable of so much more than we'd think. Motherhood draws out something almost super-human.
|He went through a brief basketball phase over Spring Break|
We continue to take each day as it comes. When we wake after an entire night of sleep we thank God. The sleep deprivation of last fall almost broke both of us. When we see those blue eyes light up and connect with us we savor it; those moments are pure magic. When we see him grab his sippy cup and drink water, we smile. These micro moments get us through the reality of daily caregiving.
|When it isn't too hot outside he likes to play in the sand|
We don't know the long term prognosis of what is happening with his intestinal system. We have appointments this coming week at UNC and might know more...although it appears everyone is in uncharted territory with our sweet Ollie. On Tuesday we meet with a genetic expert, Dr. Muga, to get insight into the question of whether Oliver actually does or doesn't have a mitochondrial disease (and if he does) trying to figure out which one.
|This swing at Hugh MacRae park is always a winner|
Through it all, thanks for being our cheerleaders and friends! You make us feel always loved and never alone.
And on a side note: I have neglected the blog for lots of reasons, but also in the midst of all this we moved our offices for Lanier Property Group. Who knew moving your office would be this much work? Whew, glad we're done with that. We'd absolutely love for you to pop in and say "Hi"...we are still in our beloved Midtown, but just a little further down at 3724 Shipyard Blvd.
If you want to follow along more closely with Ollie, I post almost everyday on my Instagram account. I feature our Ollie bear in quick little videos and photos on many of my Instagram Story posts so find me @stephlanier and say "hi"!
If you want to check out what Oliver has been up to this summer, watch these videos that his amazing teacher, Angela Pollock has been making of his progress and fun! Cheers to a summer filled with giggles, and pool day splashes and fun in the sun.
View ALL of Ollie's videos at the link below...there is quite a library 😎
An Oliver Outing: June 5, 2016 from Oliver Lanier on Vimeo.
An Oliver Outing: June 2, 2017 from Oliver Lanier on Vimeo.
An Oliver Outing: May 24, 2017 from Oliver Lanier on Vimeo.
Oliver the Artist: May 8, 2017 from Oliver Lanier on Vimeo.