Katie's CDH Story: Camping, Beaching, Reuniting...

It has been a while since our last update on Katie and family. For Beth and I it seemed that when Katie was in the hospital that time seemed to stop, while the rest of the world just kept marching on. We have not yet gotten caught up. Things have been so hectic that we have gotten way behind on our updates, for that we apologize.

We have had a very busy time since we brought Katie home. I had to try to cram as much information as possible into my students to help prepare them for the final exams in my class. They did not have the benefit of a full time teacher for nearly six weeks of school, so we had to make up as much ground as possible. Then, the Monday after school ended, I left with 23 students and FFA members to attend camp at the NC FFA Center at White Lake for a week. The interesting part of this is that I decided to take one particular 2 year old with me!

Michael came down briefly last summer but he was a true camper this year. The first night

there a rather ominous rain set in. Then came the storms and high winds. The cabins at FFA camp have walls that are about four feet high and then have window screens from there to the roof to allow ventilation. The high winds blew rain in one side of the cabin and out of the other. Michael seemed to enjoy shouting over the wind and thunder to inform me repeatedly, "It's raining Daddy! It's raining!" The older boys and I did what we could to block the wind and rain from completely everything by standing the vinyl mattresses up against the windows. Only two beds were spared from the thorough soaking. We wrung as much water as we could from our linens and used the cabin dustpan as a makeshift squeegee to push all the water out the front door. In certain parts of the camp the water level rose to fill the cabins with 2-3 inches of water. We had about 9 inches of standing water around our cabin. You can imagine that this was too much of a temptation for Michael, he just had to walk through every puddle!

The rest of the week went off without a hitch and Michael loved it! Beth got brave and did venture out to bring Katie to visit for two days (there is a guest lodge with all of the normal hotel amenities). We are still very cautious about hand sanitizing and exposure to certain things but Katie sure seemed to love napping in her stroller under the shade of one of the many trees at camp. Being the children of an Agriculture teacher and FFA advisor, Michael and Katie will be a part of this camp each summer for many years.

After returning home on Friday, I hurriedly unpacked my camp stuff and repacked my beach stuff. Of course my very efficient wife already had her things and all of the accessories for both babies packed up and waiting for me. Beth's family owns a house at Cherry Grove in North Myrtle Beach, SC, and I had been persuaded to go and spend Father's Day weekend there with Beth and her parents.

So the Cole crowd loaded up and took off. We had a good time together at the house and were able to spend time on the beach as well. We even took Katie out for a little while to see the ocean. We set up a rather large tent that could shade us from the sun and Katie, slathered in maximum baby sunblock, sat and enjoyed the salty ocean breezes. There were plenty of family members present to watch over her while Beth and I played in the sand and surf with Michael. Nana Joan also made it her mission to get him comfortable being in the water, and that she did. I think the boy would grow scales and gills if he could!

Now for a specific Katie update. We took her to be weighed last Friday and drum roll please...Katie now weighs an incredible 10 pounds, 7.5 ounces!!! She is doing so well that it is scary! She had grown to 23 and 1/4 inches. She has also learned to roll over, so no more just putting her down anywhere! She has also really learned what that bottle is for: she is routinely taking 4.5 to 5 ounces per feeding. That is 150 ccs! It almost seems difficult to remember when we were begging her to eat 10 and 15 ccs. Most nights she will sleep from 11pm until 7am the next morning. She is such a great baby!!

The Lord has blessed us so much! We were so excited to be able to attend the first annual reunion of "Parker's House" this past Saturday. There have been eight CDH families to live in that haven since it opened a little over a year ago. We were the fifth family. There have been four survivors so far and the eighth family is waiting for the birth of their son Daniel any day now. Beth and I were finally able to meet the other miracle children that we had heard and read so much about. All of the survivor's families showed up for the wonderful day of fellowship. While each one of the children's CDH followed a different course, it was filled with similarities. All of our lives have forever been affected by CDH, and in many ways Katie was born into a dual family; related not by blood, but by suffering and experience. Carter, Bodee, and Davis will always be her CDH cousins!!

Ashley & Jessica with Davis, Bodee, Katie, and Carter

We were all very proud to share our experiences with the newest couple to be affected, as they await the birth of their little fighter, Daniel. We were able to answer many of their questions and at least give them some insight into what they are about to face. This would have been invaluable to Beth and I had Katie been diagnosed before birth. Now our prayer is not only to ask God to continue to bless the four that made it through, but to also provide comfort and healing for the families that lost their little ones. We also pray for baby Daniel's family as they take their first steps in what will undoubtedly be a difficult journey.