There really is no other way to describe it. We had an incredible summer! I have truly been “on vacation” the last couple of months. Sadly, I procrastinated on these journal entries and I apologize. The last time I wrote- there were 10 days of school left- now there are less than 10 days before it begins. Unbelievable!

JUNE
Kicking off the summer included a get together with the VanHoutans and Duinstras at our now handicap accessible house (our front walk was made into a brick paver ramp). All the kids had a great time and we truly enjoyed one another’s company. We have some very wonderful friends through the tragedy of circumstance.

Special Dads with Wonderful Kids

We had an endearing celebration on Father’s Day as Grandma Katie invited us to Assumption Catholic Church downtown for the blessing of Bridget’s Garden. Katie and her Garden Club revived the courtyard, creating a special place in honor of Bridget- including a butterfly bush. It was an amazing tribute to our very special girl and a perfect way to celebrate family that day.

Bridget's Garden

Then Harrison and I jetted off to Florida for a few days with our dear friends, Anne and Charlie. The boys got to play golf, tennis and swim to their hearts’ content. Anne and I got to sun, read and relax with wine. I really missed that when I got home!

JULY
Harrison set out for his next vacation with his cousins to Vermont for 9 days. Whew- that’s a long time without my little man. I really missed him after Florida, but he loved every minute of it. Sadly, we lost our tried and true dog of 16 years (yes, you read it correctly) while he was away. Orvis will always hold a special place in our hearts. So, Dave and I decided to take our one dog and one child to the beach for the weekend. It was fabulous. Bridget got her toes in Lake Michigan as well as the sand. There’s nothing like a sea breeze in summer during a quiet weekend away.

Girls at the Beach

Then the four of us headed off to Louisville, KY to visit our friends the Masters. It was HOT down south, but Bridget enjoyed the refreshing pool water, as we all did. As we visited the Louisville Slugger Museum and Factory, Harrison received his first birthday gift – his own autographed bat. We had a wonderful stay with friends and continued our adventure in Zionsville, IN with a visit at the Swacks with the Greenes and Twitchells. Let’s hear it for DG sisterhood- wow!

As the month ended, we embarked upon our first BDSRA (Batten Disease Support and Research Association) Conference in Oak Brook. Although we feel close to our friends in Downer’s Grove and Chicago, it was so good to get connected to the other families we’ve only met via cyber means. We also had the opportunity to listen and meet some more of the researchers that are working on gene or enzyme replacement therapies, including a representative from BioMarin, a company that did the phase 1 stem cell therapy trial through the Children’s Hospital in Oregon. The smaller group that is known as the Batten Family Coalition (the 6-7 families forging ahead that have children with Late Infantile, same as Bridget) met and have solidified a meeting of the minds to include many different researchers of Batten disease. They are coming together to meet in November, partly sponsored by the NIH and partly sponsored by the Foundations that we have all created. It will be a very exciting time as researchers for Late Infantile have not done this before. They are meeting on November 11 (an easy date to remember) and we look forward to what transpires. Wouldn’t it be wonderful to have them coordinate their research so that a cure truly materializes???

AUGUST
Off to the Lake again, but with many other takers! The annual Kennicott family reunion the first weekend in August is always a hit. This year, the weather was perfect, food delicious and sleep, well, we returned home tired for sure. So great to see all the cousins and celebrate a new baby as well as 2 engagements. It never stops growing!

Kennicott Cousins, 8 & Under

At home we are preparing for school to begin and an 8 year old’s birthday celebration. Harrison had a swim party at Dolphin Cove (our local park district) on Saturday and a family cookout at Aunt Jan’s on Sunday, August 15, 2010. I think with any milestone, like a birthday for instance, a sense of nostalgia takes over. I’m a little weepy today and Dave certainly can’t tell why. I guess I can’t really put my finger on it either….my son is eight, school is about to start (a perk: Harrison is coming to NBS with me), summer is coming to an end, Bridget lies in her stroller-growing longer, she goes back to her old school for a month because the new one isn’t quite ready, 2 years ago today I had my last chemo….and the list could continue. However, I cry when I’m happy, too, and all of the things listed are reasons for happiness. We have many blessings, I know. Sometimes, I just wish they were a little different, like any normal family would.

Bridget continues her stability in health- growing and eating well, having very little seizure activity, and maintaining the ability to get out and about (with 100% supervision and help). We aren’t without some hiccups from time to time. But, the best part of the day is when she sneaks you a smile. We treasure each sweet one. I know she will be ready to share those with her teachers when she goes back to school on Aug. 30. Bridget is their rock star. Here’s to a happy, successful start to the school year!

Hope 4 Bridget

There are 10 more days of school , but who’s counting??? ME! I am looking forward to this summer more than I ever have in the past. With my health restored and all that behind me, I’m trying to make the most of it. I’m striving to be healthy and exercise and get rid of the new aches that come naturally with age (aside from the aftermath of 3 surgeries). www.chicagotribune.com/news/local/northnorthwest/ct-x-n-health-mom-daughter-sick-0414-20100428,0,7203839.storyA story about us girls. But, my focus is always on Bridget. I wear her bracelet when I’m huffing and puffing and know that if she could be up and moving, she would. So, I do it for her.

We are gearing up for summer as we attend “Noah’s Fun in the Sun” today- our friends, the VanHoutans, have a large scale, family fundraiser for their foundation and children (www.noahshope.com). We look forward to celebrating the beginning of summer, family and friends with them.

With Dave working from home and only a few things planned, we will bask in the luxury of being together as a family in the next few months. We plan on small trips to visit out of town friends and the beach at Uncle Mike’s, something B and I have missed the last couple of summers. We will take full advantage of it now. We are living in the present as each day is truly a NEW day and we’re going to live it to the fullest!

We’ve seen a little of Bridgey’s personality shine through as of late. In the early morning when you go to get her from bed, she looks at you with wide eyes and a little smile. It really is something to keep you going through the whole day. Check out her sweet smile after the massage therapist visited! I smile everytime I see this!

Some Bunny Loves Me!

It’s been awhile since I ‘ve caught up the news about Bridget. Her day to day condition remains somewhat stable and we are blessed to share that. She has had a little cough, but we’re trying some allergy medicine seeing as spring has sprung. Bridget continues to go to school and get all the therapy and attention she deserves. Her teacher, Nancy, shared some very sweet stories this week about Bridget’s classmates. It seems Alexia and Hailey clamor to be with Bridget whether its helping her push buttons on a book or wheel her down the hall. That made my heart sing- Bridget and her buddies! We’ve had services from hospice including music therapy, massage therapy and nurse visits. It’s nice to know they are always there- we can call them 24/7.

On the medical front, Cornell has opened their screening process for the 2nd phase of Gene Therapy. This is an exciting time for the Batten community and the children. The actual trial is seeking 16 children to treat, but sadly the inclusion criteria is far more difficult for someone like Bridget. We were actually called to come out for the screening process. With time to think about it, we weighed our options and found out that on a scale of 12 points, Bridget would maybe score 2-3 (they look at mobility, eating, communication and vision). She would NOT be asked to be part of the trial based on these numbers, she is simply too far advanced in the disease. To know this is one thing, but to hear it is yet another. That day was extremely difficult for me as her mom.

Another medical piece of information is very promising- a 2nd phase trial from the company Stem Cells, Inc. was applied through the FDA. This treatment uses purified neural stem cells to provide the missing enzyme that children with NCL lack. Please read this link to learn more www.globenewswire.com/newsroom/news.html?d=189322

Dave went to the Lysosomal Storage Disorder Conference in February where he learned about what scientists are researching and what other families with foundations similar to ours are doing (raising awareness and funds for research in LINCL). In fact, some of theses families have come together with the BDSRA and formed a “Batten Family Coalition” where we are all working together for the same goal. It is very exciting to have others come together with the same intent, not only to help their child, but help others with the disease as well. We look forward to the coalition taking shape and providing help for a cure for Batten disease.

Thank you for keeping up with our story, our family. God Bless you and yours.