Hearing Clinic

Today we took Gavin to Children's Hospital for his first visit with his hearing team. The hearing team consists of an ENT doctor, social worker, Audiologist, case manager, and speech therapist. We will be meeting with this same team every 3 months from here on out, and then additionally with some of the members individually (Audiology & speech therapy) on a monthly basis, which will eventually turn into weekly by 9 months. Along with these appointments, we also have started monthly home visits from an intervention specialist with Help Me Grow as well as monthly home visits from a parent advocate with the Regional Infant Hearing program (RIP). So managing Gavin's schedule has become a full-time job and I'm thinking about hiring a personal assistant for him to help me keep it all straight.

We switched ENT doctor's after our initial visit in July based on the recommendation of several people, as well as my strong dislike of doctor #1 and I am so glad we did. The doctor we met with today was kind and patient with us, even as I drilled him with my long list of questions and concerns. He sat down (imagine that!) and didn't even interrupt me mid-sentence, which was very refreshing. We met with all the other members of the team after him, who gave us helpful tips on interacting and parenting Gavin in ways that will give him the most benefit with his hearing.

Basically, we are in a watching and waiting period with Gavin. Because he is only 3 months old and will mimic the vocalization and developmental skills of normally hearing babies up until 6 months, our goal right now is to give him as much exposure to sound as possible-even though we have no idea how much he is actually hearing. The more consistent we are with keeping his hearing aids on during waking hours, (despite their inconvenience and challenges), the more exposure the speech and language centers of his brain will have and the better chances he has of developing normal communication skills as he grows. When Gavin is between 6-9 months old and can sit on our lap unassisted and has good head control, we will be able to have his hearing tested much more accurately in a sound booth and will know how much benefit he is getting from the aids. And although I never wish for my babies to grow up quickly, I am anxious for this time to come so that we will actually know something.

Gavin will also be scheduled for a CT scan and genetic marker blood test in the next couple of weeks in order for the Doc to *hopefully* be able to determine the cause of his hearing loss. It wont change the course of treatment for him at this point, but its something that we just really need to know for our own peace of mind.

And while we wait, we continue to pray healing over Gavin daily. Our hearts long for the day when God opens up his ears and restores our son to perfect health. Because no matter how big this all seems, our God is still bigger. Much, much bigger.

So that is the latest of the happenings with our sweet boy. Are you worn out yet?

S'mores

It may have taken us until September, but we finally got around to making s'mores out back with the kids this summer. Just wanted to document this accomplishment. Turns out Graham crackers taste pretty stale when you're still holding onto last year's box. 

tomayto, tomahto

and yes, that's how you spell it...don't worry, I googled it.

Although I am behind on posting about Gavin, family vacation, and the start of preschool, all I really want to talk about tonight is tomatoes. Everything else seems like too much work. Or maybe I am just hungry?

We have been enjoying a huge bumper crop of late summer tomatoes from our garden. I was careful this year not to overwhelm myself by planting too many varieties of things that produced more than we could eat or store for the winter. And with a new baby and the garden feeling a bit more like an extra chore than a hobby this year, I'm thankful I kept it simple. But nonetheless, the kids still come in from "harvesting" in the back-yard with armloads of tomatoes, peppers, strawberries, and greens nearly every day that need to be eaten.

We have been canning jars of pickled peppers (John's new passion), making big batches of fresh salsa weekly (John's food addiction), storing away homemade marinara sauce in the pantry, and freezing ziplocks full of creamy tomato soup for the cold months ahead. The kids really love to help with all the preparations and it's been fun to have the whole family involved with and enjoying the garden this year. And its cheap family entertainment that keeps us all hanging out together in the kitchen, so the stored food is just a bonus to me.

Here are two of my favorite tomato recipes I've found this year that are oh-so-delicious and way too good not to share.

Creamy Tomato Soup: http://www.foodnetwork.com/recipes/michael-chiarello/homemade-tomato-soup-recipe/index.html
(don't let the stock photo sway you from making this...it turns out so much creamier and melt-in-your-mouth good than the picture implies. Is that even a picture of tomato soup or is it a meat marinade?)

Roasted Roma Tomato Sauce: http://kitchengrrrls.blogspot.com/2011/09/homemade-roma-tomato-marinara-sauce.html
I promise you will like it or I will eat your leftovers. Roasting the tomatoes before making the sauce=brilliance. Why didn't I think of that?

Now go get cooking!!

"oh mom, you're so right. people really don't  appreciate your sense of humor like they should, 'cause girl you are cracking me up."

An Update...

God's grace is sufficient for me today. If I start thinking about tomorrow or next week or sometimes even the next hour, I quickly become overwhelmed by all that needs to be done and overcome by fear. This is the greatest lesson I have learned over the past week. I have to trust God to help me through just today, and let everything else go.  Some days its a lot harder than others.

Gavin received his hearing aids on Friday and we have been trying to adjust to our new normal. We didn't realize that our biggest challenge with hearing aids would be trying to keep them on our squirming, kicking, head thrashing baby. And although they are the smallest size they offer, they are huge on him. It is the constant battle to put them in again and again, hour after hour, day after day as he cries and pushes us away that has been the most draining emotionally. We are anxiously awaiting the arrival of a device that is supposedly the best for keeping the aids in place on small infants. Hopefully that will make things easier for all of us, especially Gavin, who doesn't understand why we are forever pulling and poking at his little ears. In the meantime, as I write this Gavin is sleeping in the swing wearing Norah's pink-bowed headband as a temporary fix. Poor guy.

We are noticing that Gavin is more interactive and interested in his surroundings with the hearing aids, but we have no way of knowing at this point how much he is actually hearing. Eli and Norah acclimated to their brother's new gear without much fanfare and they are laying their sweet hands on his ears daily and praying for God to heal them. I love to listen to their innocent, simple prayers. "Work ears!" and "Jesus, make these ears open right up" and my favorite of Norah's-  "Jesus pray that Gavin can hear me"

The next several months will be those of watching and waiting. Gavin's hearing will continue to be retested as he grows to gauge how much sound he is able to gain from the hearing aids.  The levels will be adjusted as needed and we will continue to talk and talk and talk to him to give him as much language and hearing opportunities as possible. 

And look at his sweet little face? So much personality already at only 2 months old. I just love him.

Gavin

I have been putting off this post for several weeks now. My heart had been too heavy to put into words the emotions I've been feeling and I just wasn't ready yet. And although I'm not sure I'll ever really be ready, I know we have friends that read this blog who care about our family and the happenings within it. The past 8 weeks with our sweet Gavin have been ones full of great joy intermixed with great sorrow. At 4 weeks old, Gavin was diagnosed with profound, bilateral hearing loss at a routine screening test. The type of loss he has is unexplained, it is life-altering, and it is permanent. And we know that Gavin belongs to a God who doesn't tremble at any diagnosis and can completely restore with a touch of His hand. So while we pray for healing every day, continuously, and will not cease; we are also taking the necessary medical steps on the path of helping Gavin to start hearing sounds. I am most heartbroken as a mom knowing that my child might someday feel different than other kids and will have to work harder and struggle more to gain skills that come naturally to most. I want to protect him from the hardship and pain that can come from having a disability, yet I know I wont always be able to. And it just kills me.

God, in His kindness has been giving John and I many small reminders of His presence and tender care for our family throughout this process. It truly has been a depiction of the 2 Corinthians verse "For when I am weak, then I am strong." We have been wrapped in love and support by our families and friends and covered by their prayers. John is my rock, always there to remind me that everything really will be okay and to pull me in for a warm hug when I'm losing my mind.

It has been a busy few weeks of appointments with audiologists, doctors, social workers, and care coordinators. We have been overwhelmed with information, pamphlets, programs, forms, and insurance uncertainties. But next Friday is a big day. Gavin will be fitted with his first pair of hearing aids and will be able to hear our voices for the first time. I am anxious to see how he reacts when he realizes our house isn't the quiet sanctuary he originally thought.

Thank you for your prayers and all the love you've been sending our way. God is good, even when we don't understand. 10,000 reasons for my heart to find.

Because it's the best therapy money can buy...

and it doesn't cost a single dime.

I am a runner. I am not a fast runner. I am not a competitive runner. I am not a group runner. I am not the kind of runner that spends time planning routes. I do not run long enough distances to warrant wearing a water backpack. I do not own a sporty watch that beeps at me to tell me how fast my pace is because I do not care. I run to enjoy the feeling of being completely alone, to mentally work through the days successes and failures, and because I have more than a just casual affinity for ice-cream.

And it feels so good to be back pounding the pavement again after almost 11 months off. Here are some of the songs I am loving sweating to this summer:

Barton Hollow-The Civil Wars
Free Me-Joss Stone
What Makes You Beautiful- One Direction
Stronger-Kelly Clarkson
Princess of China- Coldplay and Rihanna
Love you Like a Lovesong- Selena Gomez
Faster- Matt Nathanson
Free- Graffiti6
Somethin' 'Bout a Truck- Kip Moore
Part of Me- Katy Perry

and then the cool down....

New York-Snowpatrol
I Wont Give Up-Jason Mraz
Poison and Wine-The Civil Wars