Beach trip 2009

We are still here!!! Sorry for the lack of blog updates. Things have been busy. I was talking to a friend at church today about the blog(Lori-see I told you I would mention your name) and I realized it has been a while. I don't think to write about everyday happenings so I am sure many of you wonder how we are doing.

We are doing good! We just got back from the beach and had a great time. It was good to get away and enjoy just the six of us together-alone. Below are pictures of our trip. We've got decisions to make about Nicholas but I will save that for another blog!

Me and my B.

Check out Nicholas' hair. I think his hair went into shock when he touched the water.

Brandon fell asleep inside his pillow case.

Megan and Brandon's personalities are evident in this picture. Take a guess by their facial expression and poses! Miss Princess and class clown!

The sun wore him out.

Nicholas enjoys the pool. He kept smiling but we couldn't get it on camera.

Okay..I know I have four kids but when I look at the picture-WOW! I have FOUR kids. It doesn't seem like a lot until I saw the picture.

The HIPPO! A massive, bouncy, water slide. Yes, I did go on it too!

Sorry, couldn't resist taking this picture. It is on the bathroom of our favorite restaurant-The Provision Company.

Nice and relaxed..isn't he adorable?

I love Elmo!

Nicholas responds to the color red so we use a lot of Elmo toys when working with him. He gets SO excited when he sees Elmo. Below is a video of Nicholas responding to his Elmo toy. He tries so hard to talk to it-it's very cute. At one point, Stephen walked in the house and screamed "hello." You can see Nicholas lose focus and turn towards Stephen's voice.

We love days like that. When Nicholas is feeling relaxed and good, he makes so much progress. Those are rare days but oh what a joy when it happens!! Well, any day is a joy with Nicholas. Let's just say those days are filled with extra joy!

Off to camp we go........

On Monday the 3rd though 5th grades kids went to Camp KidJam at Wake Forest University. Steve went as a leader and little Stephen went as a camper. This is only the second time I have ever been away from little Stephen. I miss my first born baby!! Today is Wednesday and I am SO ready for the Stephen's to come home!!! Hmm...what is wrong with that picture??? Oh, yeah that would be Claudia not me!!! Oh well, she is a second mom to the kids anyway..

Last minute instructions from Christy. Is that a grin or grimace Stephen??

Saying goodbye to little brother with a threat to keep their room clean while he is gone.

Saying goodbye to other little brother. (Yes, I am crying!!)

Time to load up......

Pastor Don greeting all of the kids.

Pastor Don getting ready to pray for the campers.

Christy laughing at me for snapping so many pictures.

Hmm...would you trust your kids with that bunch???

Seriously though, that is one group of special people. People that love the Lord and want to show children all about that love. We are so blessed to have such an amazing group of volunteers that serve with our children. Thank you from the bottom of my heart for all you do!!!

Till we meet again...

A few days ago we headed back to Brenner but this time not for Nicholas. This time it was to say goodbye to a wonderful, wonderful man. Last Sunday morning, before we left for church, we found out that one of Nicholas' PICU nurses died suddenly from a heart attack. The Lord had called him home. It was obviously quite a shock and still seems so unreal to us.

David was an awesome nurse and man. I remember the first time we had David as a nurse. Nicholas was just off ECMO and Stephen and I were VERY picky about who kept him at night. At that point, parents were not allowed to stay in the rooms at night in the PICU. I wanted to make sure that any nurse that kept him was a mother type person who would nurture Nicholas in my absence. It was SO hard to leave him especially after we had almost lost him. In walks David. Okay...this is a man not a woman. I wanted a mother figure-loving, nurturing, etc. He was quiet, shy and would not look at us in the face. Great! I am NOT leaving. David walks first to Nicholas. Rubs his head and says "Hey little man. No coding tonight, right? We are going to behave and have fun." Brownie points!! Then he leaves. Uh..excuse me, where are you going? He comes back with treats and coloring books for all of the kids. Then proceeds to ask us what we need. David became one of our new favorite nurses. Our big, quiet, shy nurse.

David's love for all children radiated through his work. You could not help but love him. His quiet and shy ways were what made him so endearing. The picture below was on David's locker at work. That was his piece of Heaven on earth. He now has this for eternity.

David, we love you and will miss you so much. I can't quite believe you are gone. While we will cry and mourn over our loss we know you are at peace in the perfect place. I know all of the angel babies that you loved and cared for were waiting for you at the gates of Heaven. Thank you David for everything. Until we meet again.......

Please pray for the staff at Brenner. This is obviously a huge loss for them. Many of you know of our love and appreciation for the staff there. We not only hurt for losing David but we also hurt to see them in pain. It takes special, special people to do what they do and now they must do this and deal with the loss of David.

Watch out!!!

Megan has never been interested in riding a bike. Stephen D always rode and learn to ride without training wheels at the age of five. Well, Megan decided that this summer she would ride her bike and take the training wheels off all in one shot. Being as stubborn as her mom... she did it!!! All within a couple of tries. As you will see she still needs to work on braking!!!

And the Heavens will rejoice....

This is what one of Megan's Sunday School teachers said today when she told them that she accepted Jesus into her heart. The Heavens are rejoicing becuase another one will enter the Kingdom. Yes, my baby girl accepted Jesus today. She looked at me during the service and said "Mommy, I am ready." And I knew. I knew this was the moment. Shockingly I did not lose it! I walked her out into the hallway where it was just the two of us and we prayed together. What a special moment!! I will never forget it.

Jesus said "Let the children come to me, and do not hinder them, for the kingdom of heaven belongs to such has these." Matthew 19:14

Thank you to our family, friends and especially Megan's sunday school teachers for planting the seeds in her and helping them to grow. Thank you for being a part of Megan's journey with our Lord. Thank you for loving her and teaching her about the love of Jesus Christ so that this day would happen. Thank you for crying those happy tears today when she went to you and proudly proclaimed "Guess what I did today." Please pray for her as she continues to grow and learn about His love.

Megs, I love you so much. My little girl. The little girl I never knew I wanted and needed. I thought I wanted all boys until I saw your sweet little face and instantly fell in love. I am so honored and blessed that I could be a part of today. I cannot wait to see where the Lord leads you and to see the beautiful woman you will become. I love you Megs and am so proud of you.

Vision Therapy

One of the therapies that Nicholas receives is vision. He was diagnosed with CVI which is Cortical Visual Impairment. Nicholas' eyes are perfectly normal but due to his hypoxic event (lack of oxygen to his brain when he coded) his brain was severely injured. Instead of a partial injury he suffered a severe global injury meaning his whole brain and brain stems were injured. CVI can be temporary or permanent. In Nicholas' case they think it will be permanent due to the severity of the injury. So his eyes are normal but the brain stems connecting his eyes to his brain cannot function properly. Therefore his brain cannot interpret what he sees giving Nicholas his lack of vision. As well as they could with Nicholas' condition, they have diagnosed that he can distinguish light and light changes (which is a huge blessing and miracle) He also tends to favor the color red (that's my boy!!!)
Nicholas' therapist Camille has helped us figure these things out. It was pretty amazing to see Nicholas looking at the different colors and very clearly favoring the red light. She uses a light box and puts different transparency colors on it.
We have been so blessed to have wonderful therapists and nurses who have become a part of our family. They not only love Nicholas but also our other children. Camille has put Brandon in charge of the vision therapy. Below are pictures of Camille showing Brandon everything he needs to do and know to help Nicholas. Those of you who know Brandon know he never sits still long enough to teach him very much. He sat and listened to everything Camille taught him. When Stephen and Megan got home, he proudly gave them instructions but also said that HE was Nicholas' vision helper.
We are so blessed that we have a wonderful therapist who took the time to show Brandon these things and are blessed that we have a super big brother in Brandon who wants to help his little brother learn and grow.

Instructing Brandon on the light box.
Camille was showing Brandon how to gently rub Nicholas' arm to help stimulate him before the exercises.

Now why doesn't he listen to me that well!!! We love you B!

Prayers for Kaelyn

Please keep Kaelyn in your prayers. She is a "heart child" and part of Mended Little Hearts (the support group the we are a part of.)

Here is her story copied from her caring bridge page:

Kaelyn Makenzie Pack was born on August 27th, 2003 with Atrioventricular Canal Defect. Although her condition was detected by ultrasound at only four months of pregnancy, nothing could have prepared us for the future. After many routine visits to Brenners Children’s Hospital, we awaited her birth and the three life-saving surgeries that would follow. Kaelyn endured her first operation when she was six days old, her second at six months, and her third when she was three years old. Due to unexpected complications during a heart catheterization, she also had two thirds of her intestines removed one week after her last heart surgery. Since this last surgery she has had many complications and hospitalizations. In December 2008, Kaelyn was diagnosed with pneumonia. After a short stay at Brenners and a round of antibiotics, she returned home and seemed to be getting better. Much to our surprise, what we thought was pneumonia returned and continued for the next five months. At the end of May 2009, we brought her to Duke Children's Hospital and the cardiologist diagnosed her with a very rare condition known as Plastic Bronchitis, which is a complication from her third heart surgery. On June 1st, 2009, Kaelyn had another heart catheterization and once again experienced complications. This has begun our stay here at Duke. Through all of her ups and downs Kaelyn has been so strong and such a fighter. Her contagious smile and bright blue eyes continue to bless our lives everyday. Thank you for reading about her journey and joining us in the fight for our precious little girl.

Please keep her in your prayers. Her site is: http://www.caringbridge.org/visit/kaelynpack