Wednesday, July 22, 2015

Oh joy, she's almost 1 yr. post-transplant!

As we approach July 25, I am feeling extremely emotional. What a journey it has been. What a heap of learning we've done. Since the diagnosis of DOCK8 in March of 2009, no one could have guessed where we would be these 6 years later. Many DOCK8 children have died. Some died without ever getting a diagnosis. HOWEVER, many more have lived because of the diagnosis. NIH worked relentlessly to discover what was happening to our kids. With the first eleven kids grouped together and 4 of those dying before it went to print, we knew this was going to be a fierce battle. Kelsey was patient 5-1 and Karly was patient 5-2. Patient 1-1 was successfully transplanted. Patients 2-1, 3-1, 7-1, and 8-1 died. Patient 4-1 was successfully transplanted and his sibling, patient 4-2 should transplant pretty soon. Patient 6-1 was successfully transplanted and patient 8-2 died. We have met many friends along this journey and you all know who I mean, yes you. Without the support of these friends, family, and foremost our Lord and Savior, we would be a sorry mess. We learned what we needed along this journey to grow us and sustain us in the darkest times. We found joy and thankfulness at every turn. I cannot even voice my gratitude without crying. I am overwhelmed with God's love. I look at the strength, endurance, growth, perseverance, joy, laughter, love, faithfulness, and peace we've experienced as a family and as individuals.  I am blessed beyond measure!

Karly remains very stable. She has not been sick once since we've been home. Her heart is stronger than it was in March, and we pray that it will continue to improve until it is normal. Her skin looks beautiful. She can sleep and eat like normal people, well except for the nasty food allergies which haven't improved, but we hope they will go away as she gets stronger. We hope that we see a few more medications fall off the list by our return home in August. Her kidneys haven't seemed to heal themselves. The balloons in the arteries seem to still be holding, so blood is getting to the kidneys. The vascular issues were expected to improve. It was suggested that now we must look closer at the kidneys to try to understand why the CR isn't improving and what should be done. This is not one of NIH's expertise areas. Her heart doctor recommended a kidney doctor at Methodist she will work with. We will see him in August. This remains a concern, but we are so pleased with how she is doing.

Karly has thrived this summer; some days I barely see her.  She is not wearing her mask anymore unless someone near her is exhibiting sick symptoms, then I want to wear a mask also. She will be gearing up for 2 classes this fall...Anatomy and Physiology 2 and Medical Terminology...both in her wheel-house. I'm excited for her!

We still just take one day at a time around here. Matthew 6:25-34 shares Jesus' words about this issue. That was a super great lesson to learn through all of this. We've had a fun summer and it's not over yet. We returned to Lake Michigan last weekend. We went before her transplant last year. It was nostalgic and so different in terms of her health. She played in the water(being very careful not to swallow any lake water) and played in the sand. She played with her cousins. We had a such a happy time. We've been to Maryland, not for a hospital visit, but for a family reunion. We took a trip to Sevierville, Tennessee for Konner's Rising Star Dance Nationals. The weather wasn't that great, but the one day we chose for hiking to the top of Chimney Tops in the Smokey Mountains was excellent.
She had to stop about every 5 minutes, and I had my doubts that she would make it. However, in character for Karly, she persevered to the very top. It was very scary climbing the rocks to the top, but Trent, our mountain man(goat) went up and down that things so many times spotting Kassidy, Karly, and me.

Karly and I will be making her 1 yr. post-transplant visit to the National Institutes of Health from July 26-31. Please pray for our journey in a number of, wisdom, positive and informative test results, visits with other Dock8 families and friends, and making new friends. Peace be with you!