After Surgery

Karly had tubes placed in both ears and is doing very well. This should help her hear better. She was placed on another antibiotic for a sinus/lung infection on Tuesday. Hopefully this will help with her goopy cough. Her liver test is a bit off, but is being closely watched. All in all she's in a good place. Kelsey is always a stumper. The steroid usage is an issue. It may be the reason she has small cataracts in both eyes. Even before we found this out, they had been trying to figure out how to decrease her dosage. She will be experimenting with a dosage change over the next month. We should know something about the transplant at our next visit & meet with our transplant doctor. The NIH is going to hold a Donor Drive on behalf of the girls on our next visit. Please pray for an outstandingly good turn out. We still have our hopes on an actual match.

Karly and I attended an AFCEA breakfast in June where she spoke on behalf of the Children's Inn. She and the founder of the Inn accepted the $530,000 check presented by AFCEA. We just heard that the AFCEA group was touched and awed by her speech. The Inn recorded a video interview of her(and Kelsey and I) expressing our gratitude for having a place to go to while undergoing treatments, what the Inn means to us, and how it has evolved. They also recorded a public service announcement that expresses her thankfulness for the Inn and encourages others to give. She's becoming quite the speaker. After we landed in Indiana, the doctor called to say that one of Karly's cultures was growing a different bacteria than she had antibiotics for. As always, they are so on top of her every need. Karly & Konner will be attending volleyball camp for three days this week. I know it will be fun for her to be with friends and playing the sport she loves. Please pray for her endurance and strength. Please pray for Kelsey to be able to focus on at least one of her BSU classes over the next month. That's the update for now. God's glory is ever present...look for it.
Love,
Mom

Going well!

We have put Ocean City, the fun week with my sister and family, and the Augustin Family reunion behind us. We are working on the refueling today. Karly finally hit a wall yesterday. She opted out of the activities to nap and rest. I'm glad that she can know her body and make that mature decision. She has been coughing up more junk than usual. Her doctor will check it out this week. She is up to 111 pounds. What young girl wants her weight announced to the world, so at some point, I will have to be more vague. She gets so many complements about how cute her hair is. She is so able to pull it off. I hope that all the stages her hair goes through will be equally as cute. Kelsey has had a bad couple of weeks. With the antibiotic finally working, we hope to see her with more energy. Yet with this particular antibiotic, she gets a great deal of body pain so now she has to cope with that. Trent has only slept in his bed 1 night in the last 4 weeks. I think everyone is looking forward to their own beds. Vacation is awesome, but it is always awesome to be home together. The family had tubes of blood drawn today(not Tyler because he is already back at school working). We are hoping to find out if any of the other children are carriers of this Dock 8 disease. If they are, it will lead to more studies. We watched Kelsey's T cells in action today on the computer. We enjoy seeing and hearing about the progress the laboratory doctors are making. Konner and Kassidy are half way through the Sibling Day at NIH. This morning the girls visited the NIH Laboratory of Medicine and Mock MRI scanner. This afternoon they participate in art and recreational therapy. I hope the day's activities takes Kassidy's mind off her blood draw this morning. She REALLY doesn't like it, but did well. I hope that she is not a carrier, because did I mention, she REALLY doesn't like it. We have one last day this week together as a family, with all of my siblings and their families, and my mom. I think the plan is for a huge Apples to Apples game. As we live each day, it is a day the Lord has made. Let us rejoice in it!
Love,
Mom

Greetings from the Koch Family

Kelsey, Karly, and I were at NIH from Monday night, July 21 to Thursday, July 24. The girls were refueled on Tuesday with IVIG. Wednesday and Thursday were Ophthalmology, ENT, PT, OT, and Dermatology Grand Rounds. Basically, Karly is doing very well. She could use glasses for driving, but she's not driving yet although she got her permit. The doctor believes the double vision will not resolve, but said that she compensates well. She gained 4 pounds. Her physical therapist thinks she is on the right path. Her balance will continue to improve as she tries to do her normal activities...volleyball and ballet. Her hearing in her right ear will be investigated on July 14. If it is just fluid, she is scheduled for surgery to put tubes in on Thursday after an MRI. We flew home on Thursday. We went to Konner and Kassidy's ballet recital Friday night. Tracy and I drove to Purdue on Saturday to pick up Trent from this week at the Purdue Research Park Entrepreneurship Academy. We attended the breakfast. We were surprised when Trent and team won first place. Tyler was able to fix his Explorer so drove home to go with us to Maryland for our second respite week at Ocean City, MD. We will visit my sister and her family for a week before our family reunion at Solomon's Island, MD. On July 8th, Karly gets her CT scans while celebrating the 3 month period of no cancer. Kelsey proves to be no better, and in fact, has another infection in her lungs. She is starting another antibiotic to get the resolved. Our doctor is so good. She actually called us while we were on the road to Ocean City to find out where to mail the med. We have thoroughly enjoyed our week at The House By The Sea. We had an awesome time, ate amazing food, and made great memories. Another highlight we are looking forward to is the Augustin Family Reunion. This will be an awesome time of catching up with each other, and celebrating our lives and the legacy of the Augustin Family. The girls return to NIH to get more IVIG on July 13 while Konner and Kassidy participate in Sibling Day at NIH. After all that, Tracy and crew will return home while Kelsey, Karly, and I stay until Friday. I hope you kept up with all of that. Who would think that day after day so many things keep happening. We are loved. We are Blessed. We are amazed. We are enjoying each day itself. May you find these things in your lives.
Love,
Mom