Happy Summer!

Thank you for everyone who has been asking about how Oliver is doing. I apologize for the inconsistent posting...Andrew and I have both been working hard the past few months and time to write is scarce.

Currently, Oliver is averaging 1-4 seizures a day; they usually last around one minute.

He has settled into a routine at school and is riding the bus in the afternoon. We’ve had the same CNAs for many months now, and we dread the transition when one of them (Molly) leaves at the end of July. We just met a new CNA (our 11th one) and hope she’ll be a good fit. Since most of our CNAs are UNCW nursing students, they come and go so quickly. It is worth it to get such quality people, but it can get tiresome to keep training and investing in getting to know each one.

We had Shane Taylor (handyman extraordinaire) build a frame for Oliver’s new special needs swing and shade in our backyard. Oliver LOVES it and spends up to one hour at a time in it. We are thankful for Shane’s vision for our unusual request; it turned out looking so good!

The awesome swing and shade in our backyard

We are thankful and thrilled to report Oliver’s behavior has also been improving over the last month or so. No more biting or pulling hair (at least not his little friends), although he has bit through his jumpolene and almost through the arm on our leather couch in the midst of a sensory moment. He is using the potty 25% of the time (when we put him on there.) He is worlds away from initiating going, or stopping himself from going (but we are taking the long view). Remember when I said I hoped he was potty trained by 4, that is funny in retrospect! I was so much more ambitious in those days. If and when Oliver is fully potty trained, it will be because he is ready. I pray the Lord will bless us with that gift, but know it isn’t a guarantee at this rate.

We confess we are very discouraged by Oliver’s lack of communication. A spontaneous “I LOVE YOU” only happens once every month or so...it is SO HARD. He often looks through us, not really at us. It appears he is uncomfortable in his body so frequently, and we just don’t know how to help him. The lack of communication (having a sporadically mute child) is beyond painful. If your child can tell you about their day, say their own prayers, ask you questions, you should thank God tonight.

Oliver continues to receive speech therapy with Amy Nolan twice a week, and she gets him to do and say amazing things. The problem is, he can’t generalize those skills to everyday life (even though Amy encourages us that it is ‘in there’).  I think she is also discouraged by the regression we’ve seen in the last few months. At her behest we are demo-ing a Dynovox, which is an Augmentative Communication Device. Oliver seems to think it is a giant iPad, so he often tries to turn it off in order to find a game (funny little guy). Our hope is the Dynavox (which is just a loaner right now) will be a tool for him on his hard days when speech is all but impossible.

Oliver and the Dynovox

We continue to go to the TEACCH center once a month or so to get their help on behaviors and routines to create for Oliver. This past session we brought along Molly, and I think it was a great learning experience for her as well. We are so thankful for the creative thinking they have done to try and help us with Oliver. The biggest take-away for me is to SLOW DOWN. I’m always so fast paced, and Oliver processes much more slowly than I even realize.

We also have hired a music therapist to come in the home and see if we can get Oliver to communicate via song. I’m wondering if we can create a language of songs? We’ll see...It doesn’t hurt to try, right? We’ll try almost anything. Since this isn’t covered by insurance or subsidized in anyway, it will have to work to justify the cost. We’ll let you know how it goes; our first session is scheduled for next week.

As for Andrew and I, we are doing well. We are both working hard and go to bed earlier and earlier in an effort to stay rested. We love our sleep around this place! We absolutely treasure our moments snuggling in the bed with Oliver (rare as they are) with our little family of three. When Oliver sings to himself after a seizure it is so sweet, I look at him and feel like my heart will just explode with love. He has such a precious smile that lights up the room. We love to tickle him and sing to him, since those are the times he is most engaged.

Your love, prayers and encouragement for the long haul are a gift we treasure. Thanks for caring about our precious son, the apple of our eyes.

Shaunna Kennedy

At Lanier Property Group, we have hired a “Director of First Impressions” (don’t you love that title?) who has made our lives SO MUCH better! Shaunna Kennedy has been a breath of fresh air, an encouragement, and a super quick study. When I drive into the parking lot and see her car there, I can’t help but smile and thank God for bringing such an amazing person to LPG!

Starting in June, I’m leading a summer women’s bible study at Christ Community Church. We are doing John Piper’s “Don’t Waste Your Life” and in studying the material it has already got me thinking; especially about being a business owner and how easily we could waste that opportunity. If you want to join us,  email me and I’ll get you the information. I am sure it is going to be an awesome time of learning and new friendships, just like the past 2 years have been.

Mother's Day weekend Andrew sent me off to Bald Head Island with my mom, grandmother and some girlfriends. It was heavenly! Stephanie also recently graduated from the Leadership Wilmington class, which she is sad has come to an end.

Wishing all of you a wonderful summer!