A Journey for Kelty

A very special journey for Kelty ....

Immediately following our visit to Vermont for Mike's graduation from medical school, we drove to Boston for a series of medical appointments for Kelty. Some time ago, Kelty was diagnosed with Apraxia of Speech, a neurological speech disorder that affects the brain’s ability to send the proper signals to move the muscles involved in speech. Apraxia-Kids.org is a wonderful site that helps explain Apraxia of Speech, treatment options, and resources available. I really encourage you to browse through the Family Start Guide which does a wonderful job explaining Apraxia of Speech .. it's been a tremendously helpful resource for us.

Kelty started working with a speech pathologist over 2 years ago ... wow, 2 years! Over the course of these 2 years we have literally taught Kelty every sound, syllable, and word that he now has in his vocabulary ... we've taught him how to move his lips, tongue and muscles to communicate verbally. We've literally had to train Kelty to speak. We have an AMAZING speech pathologist here, truly amazing. Kelty responds so well and we've all formed a wonderful bond ... it is through all of our efforts, including Kelty, that Kelty now has a voice. But this is a long journey for Kelty and though he has made great progress ... we have a long way to go.

Kelty with his speech pathologist, Julie ... working on finding "g" and the "guh" sound.

Kelty has no other developmental delays ... and though we are truly blessed with that, the challenge is that Kelty is very smart and understands EVERYTHING! We have in a Kelty a very bright, happy, imaginative, expressive, active and social little boy that simply cannot speak what he knows! He has stories to share but cannot tell them ... he has feelings to share but cannot speak them ... he has so much to say but a voice that fights back. He loves to talk, but his speech is filled with word approximations and mostly goes misunderstood. He makes up for his speech difficulties by animating ... I wouldn't be surprised if he turned out to be a little actor.

Several months as we were plugging along at our speech appointments, Julie had a little heart-to-heart with me. There was MORE that we needed to be doing for Kelty ... and our journey to get Kelty seen at the Center for Communication Enhancement at Children's Hospital Boston began ...

On May 23, 2011 after consults, referral paperwork, coordination with insurance ... Kelty had his 1st appointment at the Center for Communication Enhancement at Children's Hospital Boston. I'll be honest, Al and I were hoping to hear "Kelty is fine, just keep doing what you're doing and he'll be tracking normally soon" ... but it's not what we heard. Instead, they confirmed what Julie had already told us ... Kelty needed the aid of an Augmentative Communication Device. Over the course of one week, the speech pathologists worked with Kelty on various communication devices and decided the Vantage Lite would be best suited for Kelty. Of course the decision was ultimately for Al and I to decide and we are still in a state of disbelief, but it is our job to give Kelty every opportunity to speak and to be understood.

This device will essentially "give Kelty a voice" until he is able to communicate successfully on his own. He can build sentences, ask for help, ask for things he needs and share with us everything he know but cannot speak ... I am so excited to hear what Kelty has to say!

Now, we are in a state of waiting from the insurance company to decide whether or not this device will be covered. Though we've been assured that it will, does anyone have luck with their insurance company the first time around? If not ... we will make this work.

On the lighter side of things ...

In between appointments; we were able to enjoy a little of Boston with Al's parents, who were able to continue their visit with us after leaving Vermont ...

We visited the tomb of Paul Revere ...

We spent an afternoon at the Children's Museum ...

Every little boys dream ...

and this too ...

Hands-on learning ...


We ate at Cheers (that's my Bloody Mary)!


... and despite a busy schedule, we enjoyed some great family time and Kelty was able to have fun with his Mimi and Papa.

Vermont

A long time ago .....

We flew back to the states to attend Mike's (Al's brother) graduation from University of Vermont College of Medicine (we have a doctor in the family now!) and to attend a series of medical appointments for Kelty at Children's Hospital Bostin (next blog post). Our journey back to the states in May spanned two weeks and it was fantastic! Here is a snapshot of our time spent in beautiful Burlington, Vermont ...

Al, Kelty, I, Mike, Sue, Papa and Mimi Clay shared a cabin on Lake Champlain for the week. It was great reunion spot for the family and we also spent several evenings with Sue's family. Later in the week we even had Mike and Sue's old friends Roland (aka, Rolo) and Rodney with us. It was a GREAT time!

We visited the Ben & Jerry's factory which has its origins in Burlington! Awesome!

Kelty fished off the dock at the cabin ...

Al and Kelty enjoyed some nice Daddy and son time on the dock ...

We took Kelty rock climbing! Sue it belaying Kelty in this photo. It was simply amazing to watch him climb, repel, and then immediately ask for "more, more". Mike and Sue have become fantastic climbers and it really made us miss our old rock-climbing days in the Black Hills of South Dakota. Once Kelty reaches the age of 4, we can take him to our local climbing wall here!

Family shot at Petra Cliffs Climbing Center

We spent a morning at Shelburne Farms, a working farm near Burlington. It was beautiful and Kelty loved every minute of it.

He played ...

Milked a Brown Swiss Cow ...

Chased the hens and even collected fresh eggs ...

... and made a bracelet from wool.

Our last night in Burlington and the day before Mike's graduation, we enjoyed a great family night of dinner, s'mores, games, and laughter ...

S'mores please!

... and what's time with family if you don't dare each other to jump into a 47 degree lake!

... and the reason for our trip to Vermont, celebrating Mikey's graduation from medical school! Congrats Mikey! Mike and Sue are now living in sunny California where Mike is a resident in Pathology at Stanford.