Our Little Human Pogo Stick

VNS Surgery Date: Friday 9/14 at UNC. We’ll drive up at 4am and come home whenever Oliver is discharged Friday evening. Long day. Assuming all goes well, this is an out-patient procedure. Surgery time is around 1 ½ hours. The main challenge after the surgery (as far as we can tell) is trying to keep Oliver from touching the wounds. Prayers for this day would be greatly appreciated!

Kidney Ultrasound: Completely normal! Thank God...this gives us the green light for the VNS implantation.


Oliver: Overall happy, progressing in his development, totally unaware of many things (I think this is still a good thing). School is going well. I met with the medical supply rep this AM to discuss medical grade potty seats. Our powder room is about to become (another) place for adaptive equipment. Our dining room is slowly turning into the adaptive equipment holding room. Not exactly how we pictured things...

Seizures: Averaging 6-8 a day. I got bit very hard in the middle of a particularly violent one Saturday AM. It was a cluster of seizures that went on and on... and and we narrowly missed a trip to the ER. It took the rescue med longer to work this time. Thank God for the Mass General emergency number to call and talk it through with a neurologist.

Books: Oliver is really into books these days which is such a gift. There have been seasons when his body won’t allow him to sit for even two minutes and hear story. We are very thankful and have been reading him books non-stop! His new favorites are the Llama Llama series.



Neurologist: Have I mentioned that UNC Med followed Duke in losing major cool points recently? I won’t bore you with the detials, but I was majorly disappointed and hurt. Sigh. So....Met with a new local neurologist on Friday and hopefully he can “tune” the VNS once it is placed. This saves us lots of miles up to UNC. We heard about him through an angel of a person at Wake Forest; Pat Gibson (literally this woman pulled me from the mental brink) and recommended Dr. Jresiat who is a pediatric neurologist in ILM. Who knew? We had an appointment with him Friday, and he is going to be able to tune the VNS once it is implanted next week. Praise the Lord.

Oliver and one of his CNAs,  Kara. We l-o-v-e her and our other CNA Kristen!

Pediatrician: Switching. Appalled by the level of care and lack of compassion recently.  I suppose Oliver doesn’t win everyone’s heart the way he does mine and that is just hard.to.swallow. I’ve cried, over it and now I'm moving on. New appointment is this Thursday with Dr. Pollock at Cape Fear Pediatrics...maybe he won’t find Oliver’s complicated situation a nuisance and something he “doesn’t get paid for?” A mama can only hope...

Speech: Sentences are in there(!), and they are beginning to occasionally (meaning every few days) show up! So cool! Today I heard him naming people such as “teacher” and “doctor” during his therapy with Amy. He really has such a sharp little mind locked in between the seizures and tumors.

Pogo Stick: If Oliver is awake there is a good chance he is jumping straight up and down. Perhaps flapping his arms, but always jumping. We have began to call him our human pogo stick. We should take a pic of his calf muscles because it would make Lance Armstrong look shrimpy. It might have taken him forever to learn how to jump, but now that he can he doesn’t want to stop. It makes our hearts smile to think about what a resilient joyful kid we have!

Marriage: Just got back from 2 nights away in Charleston. We ate ourselves into a food coma. Best meal was at Husk. We stayed at the Wentworth Mansion and it was worthy of the hype on tripadvisor. We returned 10 lbs heavier and rested up for the VNS surgery (and whatever that brings) this week. I can’t forget to mention the team of people who helped take care of Oliver while we were away. You know who you are, and watch your back...you might sprout some angel wings someday soon!

Work: The real estate business is flourishing.  I spent Friday night catching up on webinars. What can I say, I have turned into a real estate nerd! I’ve always loved to learn, but this new career has pushed this girl into overdrive. There are so many amazing learning opportunities online these days...why not learn? I even sometimes get to teach Andrew a few things about techie stuff. I didn’t see that coming :) Who knew an inner geek was just dying to get out of my blonde head?  

A year ago: Last night as I fell into bed, I kept thinking that a year ago we had one of the scares of our lives when we were told Oliver “probably had meningitis”, and would be in the hospital for (another) month. Thank God that wasn’t true, and despite the outer skull looking seriously infected, Oliver’s brain was not. That was a miracle, and the mercy God showed us that day reminds me that His love is as real now as it was then. Sometimes I have to look back on God’s provision to have the courage to face the future...

And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,  to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Ephesians 3:17b-20