Happy Holidays!!! I am not one who usually says that but I haven’t written an update since before Halloween. Hopefully your Halloween was fun and filled with lots of yummy candy. I hope your Thanksgiving was filled with family, friends, love and too much food, and your Christmas was just as wonderful. I pray this New Year is met with health, happiness and joy and will continue throughout the year. As far as Kate is concerned, 2013 was a good year and the lack of an update was a sign of good news. However, the lack of news was also due to a painful, sad and unimaginable event our family is trying to heal from. I will share more about that in a little bit.
I am thinking about the last year and all Kate faced and I am beyond thankful for the year she had. She remained pretty stable and didn’t progress too far into the disease. She has been healthy and happy. Thank you Jesus for this blessing and we pray that 2014 will be just as wonderful. She had some minor issues but compared to other batten kids we are so blessed. In the last two months 12 children have gained their wings (passed away). That means 12 families have empty arms at night when they should be hugging and kissing their kids. The heartache they are feeling is unimaginable and with each passing our hearts break and we are reminded what the future holds for us. HOWEVER, WE ARE BELIEVING IN MIRACELS IN 2014!!
Last week Kate struggled with tremors and seizures. We were praying that it would pass quickly and it did!! Another blessing. We aren’t sure why the change but we are trying to track monthly patterns and schedules to see if anything correlates so we can determine if behaviors, schedules, etc. need adjusted to avoid increases in seizures and tremors.
The girls and I have enjoyed the last few weeks together. I was able to spend most of their Christmas break with them. Some days we sat around the house watching movies, and other days we went out and shopped, ate and visited friends. I thought I would be ready to go back to work at the end of the break but I wasn’t. I enjoyed my time with them and know now, more than ever, how precious every minute is. I am blessed to have a great employer, client and manager. They understand, value and encourage work life balance!!
Over the last month Kate has had a few doctor appointments. We saw an orthopedic (bone) doctor and a pulmonologist (lung). Both appointments went great and assured us that Kate is strong and fighting hard. We consulted w/ the ortho doctor because her scoliosis has gotten worse. The doctor felt that we could control the curve of her spine with proper positioning. He looked at her wheelchair and felt that it kept her in proper alignment and gave seating suggestions for when she isn’t in the wheelchair. Much to our relief, he didn’t think a brace was necessary at this time. We will follow-up w/ him in June to see if her scoliosis is the same or worse and if we need to take any action. We consulted with the pulmonologist because Kate has a constant cough. She has fluid that builds up in her throat and she isn’t able to cough it up and out. Her cough is strong but doesn’t clear her throat. We fear that the fluid will settle in her lungs and cause pneumonia. Thankfully the doctor felt that her cough and lungs were strong. I asked whether he would recommend a cough assist machine and/or vest (vest gently “pounds” on the chest to clear the lungs) and he didn’t think either were necessary right now. We are going to do an at home sleep study to determine whether or not her oxygen levels remain at a good level while asleep. We were pleased with how both visits went and pray she remains strong throughout 2014!! Thank you Lorrie for riding with me and helping with Kate!
Next week we have three appointments for Kate. We will see her neurologist, and a wheelchair specialist, as well as meet with a local funeral home to plan Kate’s funeral. I know, I read it and say it and my heart sinks, my stomach does flip flops and a piece of me dies. First, let me say that we aren’t (or at least am not) talking to anyone about this. It has taken me 2.5 years to get the courage up to call the funeral home and am not sure am ready for it, but to be honest, I will never be ready for this. We decided early in November to take this step and after what our family has been through, more so, what Heath and Teresa have been through, we know it is better to do it now, rather than later. My struggle, other than the obviously one, is what message this sends to God. By planning am I sending a message that I doubt His ability to heal Kate? After much thought and prayer I came to the realization that God knows my heart and he knows that I believe in miracles and that I will continue to pray for Kate’s healing every day until her healing is a reality. Praying the healing is on earth and not in heaven, but trusting God’s plan either way. He knows better than us! So, like I said, we are not talking about this with anyone, so please, unless we bring it up, please don’t ask about our decision, ask how the meeting went, etc. If and when we are ready to talk, we will start the conversation. I hope that doesn’t sound harsh, it isn’t meant to be harsh. I just don’t want to cry… Second, please don’t judge our decision to make arrangements for Kate. This was a hard decision, it was a personal decision and we cant deal with others opinions. We are doing what we think is best for our family. Thank you for understanding. Now, on to the other appointments; the neuro appointment should be simple and quick. I have a few questions but like I said, she is doing well, so we shouldn’t have to discuss anything scary or sad. The wheelchair assessment almost seems like a waste since we have found a great company that adjusted her chair a few months ago. However, we are going to see if we can do anything else to keep her safe, comfortable and healthy.
At the end of November Brock, Lauren, Kate and I went to southern Ohio to visit Tracee, Willie and Westley McKinley. Brock, Lauren and Willie went hunting while Tracee, Westley, Kate and I spent time together. We had a great time talking, catching up and just hanging out. I love spending time with Westley and his family. They are very kind and loving. I know I have said this before, but it is true each time I say it, I love spending time with other batten families, especially other Late Infantile families. They know our struggles; don’t shy away from the daily routines like tube feeding, medicine, diapers, suction machines, etc. It is comforting to be around people who have a similar lifestyle and can help if you need an extra hand. Our family and close friends provide us with same kind of support and we are thankful for each one but time spent with the McKinley helps us feel “normal”. Thank you Tracee, Westley and Willie and for allowing us to stay with you and for allowing Lauren to hunt on your property. You were great hosts!!! Hope to see you all soon!
As I said in the beginning of this post, our family has faced the hardest tragedy it has known. And by our family, I don’t mean just Brock, Lauren, Kate and myself. I mean our whole family and more specifically Teresa, Heath and Tori, along with Kathryn. As many of you know my nephew, Dylan, became sick unexpectedly. He went into the hospital on Nov 14 and passed away on December 8. He fought hard and was brave throughout his battle. His prognosis was good but his body didn’t respond to the treatments as the doctors expected. However, we remained optimistic and thanked God for each accomplish, whether minor or large, he was able to make. One night I sat up with Dylan’s mom Teresa and we just watched the monitors in Dylan’s room. We were so excited to see his heart rate increase, to hear his other numbers were moving in the right direction, etc. We really felt that Dylan would win this battle. We even talked about the fact that we would look back on that night in six months and be amazed at how far Dylan had come. Naive, wishful thinking, or blind to the reality of Dylan’s situation? Perhaps, but that hope is what kept the family going and we are a family that believes in and prays for miracles. We honestly felt that Dylan would be a miracle. However, that was not the plan and now we are trying to find a new normal. Nothing about life without Dylan seems normal and I don’t think it ever will. Christmas day was very hard. I missed his voice. I missed him wrestling with his dad and Brock. Mostly I missed his smile. Why Dylan? Why is our family facing another trial? Answers we may never know but we are thankful for Dylan’s life and the blessings that have come and continue to happen since this all started in November. Please pray for Heath, Teresa, Tori and Kathryn. It is daily struggle to face life without Dylan. People ask how they are doing and I am not sure how to answer that. They are moving forward but they need time to heal, time to get established in the new normal, … just time. Time will bring healing but time cant heal them 100%. So please keep them in prayer this year as they will face many 1st – 1st birthday without him, 1st Mother’s day/Father’s day, 1st family cookout, 1st taco night, etc. We love you Dylan and we miss you terribly!!!
Please continue to pray for Kate, our family, the other batten families, and the doctors and scientists who are trying to find a treatment and cure!
Thank you all for support in 2013. Your support via prayers, friendship, encouraging words, etc. helps keep us strong, focused and able to care for our girls. Please know that if we can ever repay you with the same type of support, we are here for you!