Many of you have asked how Kate is doing. I apologize for not keeping you up-to-date. Between Lauren’s volleyball schedule, my schoolwork and various other things I haven’t had the time to write. Let me start off by saying Kate is doing well. It has been a year of change for sure but not like previous years. It’s different. The changes prior to this year were losses – the loss of walking, talking, laughing, smiling, playing, etc. This year, the changes affect her health. They are scarier! So let’s start with that and end on a high note
2015 was consumed with keeping Kate’s lungs healthy. Her lung health has deteriorated which has caused 3 respiratory infections and 3 diagnoses of pneumonia within the last 12 months. With each case it is scary, frustrating and heartbreaking. Kate NEVER cries but there were a few times when we were suctioning her we saw tears fall. I can’t imagine how it feels having a tube in your nose or in your throat. We know it is necessary to suction her but it feels like torture, especially when we are doing it several times an hour for a week or two. Thankfully, though, we have the ability to help her and are able to treat her at home.
In an effort to keep Kate’s lungs healthy we are having a procedure done to reduce the creation of saliva. A radiologist will inject a solution into one of Kate’s saliva glands, which will kill the gland. Everyone has four glands, so we are starting with one and will do others if needed. We don’t want to do too many and create other issues. We are hopeful this will help with her drooling, chocking and aspirating. The procedure will be done outpatient.
Our primary doctor, Kate’s neurologist, has signed Kate up for comfort care (palliative care). I was not excited about this. It is the step before hospice but her doctor assured me that many of her patients are on comfort care for years and about half come off at some point because their condition improves. We are hopeful this is the case with Kate. We know it is inevitable that she will need palliative care and eventually hospice, but as you can imagine, we aren’t ready for it. We never will be. We are choosing to look at this in a positive light – nurses will be more accessible when we think Kate is getting sick, develops new symptoms, etc. This, hopefully, will help her stay health and improve her quality (hopefully quantity as well) of life.
Over the summer we hired a couple of nurses to take care of Kate during the day. It was the most stressful summer of my life! The nurses were great; very friendly, did well with Kate, etc. The stress of ensuring every shift was covered was horrific!! There were several call offs, several shifts that needed to be covered by friends and family because the nurses were not available, etc. I am not one to wish the summer away and celebrate when school starts back up, but this year I was. I was so happy when school started again and we had a schedule, I knew what was happening each day and I didn’t have to beg my friends to watch Kate so I could work. On the bright side, Lauren got to babysit Kate a few times and earn some money. She did GREAT and enjoyed being in charge. Don’t worry, I was in the next room, so I was here to help if she needed anything but she is just as proficient at caring for Kate as her dad and I are. It is sad and awesome all at the same time. Thank you to those who helped with Kate’s care this summer – my mom, Patti, Lorrie, Tammy, Patti, Dianna, and Lauren!!!
Our night nurse, Cheryl, has been with us for four years this month. She is a blessing and has become family. We have always appreciated her (hope she knows that) but after this summer, and dealing with multiple calls, etc. we are even more thankful for Cheryl. Cheryl clearly loves Kate, has Kate’s best interest at heart and has an amazing work ethic. Thank you Cheryl!!!
Kate returned to school in August and for the first time in four years has a different teacher. Kate graduated to a new room, with older kids. I was very nervous about this because Kate’s previous teacher knew Kate when she was still able to walk (with assistance), talk, eat, etc. However, knowing that Kate’s aids were returning and would be with her in the new room made the transition seamless. We love Kate’s new teacher. We love how she runs her classroom, how she responds to and includes each child, etc. We are so thankful for Ms. Kris and how well this year has started. Let me brag on Kate’s aids. Dianna has been with Kate for three years and Diane has been with her for two years. They do an amazing job with keeping her safe, healthy and included while she is at school. Without them I don’t think Kate would still be in school. Knowing she is with them each day makes it easier for me to let her go and be out of my control.
Now that I think about it, we are so blessed with great care takers. Cheryl, Dianna, Diane – all awesome. My mom, Jo, has been taking care of Kate on Wednesdays since she was diagnosed with Batten disease. She takes her to therapy, plays with her, reads to her, etc. Five years of giving up every Wednesday to take care of Kate and hang out with Lauren. Wow!! And Patti!!! She gets Kate off the bus everyday (not Wednesday) and takes care of Kate. She plays with her, stands her, etc. The aids on the bus – the things they have had to learn, etc. They genuinely care for Kate and ensure she is safe while traveling to school. We are blessed!!! Thank you mom, Patti, Chandra, Peach/Linda, Dianna, Diane, and Cheryl.
At this point we have stopped looking for a night nurse on the weekends. It’s a terrible shift, we know, and no one is interested in working it. We have tried to fill it through agencies, word of mouth and through independent nurses. We are tired of training nurses who only stay for a month or two and at this point, Kate has progressed a degree that I don’t feel comfortable leaving her alone with people who don’t know her. Cheryl will pick a couple of Fridays a month, if her schedule allows, which is a huge help to us.
We found out that one of Kate’s seizures meds caused seizures, rather than controlling them. After a long six month period of slowing weaning her off of it we are happy to report she is no longer on Banzal. Her seizure control is much better! She has gone from 12+ seizures a day, to 3 seizures, on average, a day. Some days she has none, other days she may have 5-8, but overall her seizure control is much better and we are so thankful!
We are in the process of getting Kate a new wheelchair. She has had her chair since she was 3. As you can imagine she has grown a lot in the last six years. We are excited to have a chair that fits her better and allows her to be comfortable. It is a long process between insurance and the manufacturing of the chair. We hope to have it sometime early summer.
This past July we attended our fourth conference. It was the best by far. It is always nice to see the families we talk to on-line, hug the kids and just enjoy each other’s company. Each year there are several sessions to attend. Some sessions are led by families and others are led by experts in the science and research field, such as doctors. Typically Brock and I cram in as many sessions as we can but this year we decided to relax more and enjoy the time with our friends. We spent most of the weekend catching up with everyone and meeting new families. Kate did well in the childcare room. We were still adjusting to her GJ feeding tube, her respiratory issues, etc. Therefore, she didn’t stay in the room as much as did in previous years, but the time she was in there she had a great time. There were some women from Our Promise To Nicholas who brought suitcases filled with crafts, movies, and other activities. They ensure all the kids were entertained, included and happy. They did an amazing job. Check out their website, if you have time. http://ourpromisetonicholas.com
Lauren had a great time as well at the conference. The SIBS program keeps kids busy, provides an outlet for the “unaffected” kids to ask questions, express their feelings, etc. Lauren enjoys being at the conference. We rarely see her because she and her friends are busy hanging out and catching up.
Kate celebrated her 9th birthday in September. We had a small birthday party with family and really took the time to focus on the fact that she was with us for another year. It was a hard year, but she is a fighter. We often take birthdays for granted or ignore them because we don’t like what the age represents, however, we know that each one is a gift and needs to be celebrated. So that’s what we did.
Here we are in the middle of the holiday season. It is a time of joy, reflection and thankfulness. I have had a few people over the last couple of weeks ask how we can celebrate. If you learn one thing from our journey, please let it be this. Happiness is a choice (unless you depressed), & Joy is a gift from God; it is found from within. Please know that we are a happy family. Am not saying there aren’t days when we are an emotional mess but overall, we are happy. We laugh more than we should, we love like it’s our last day together and praise God for each sunrise.
To those of you that read this whole thing, thank you!!
Merry Christmas. May 2016 bless you greatly!
One last request, there are many families facing their first Christmas without their child, parent, spouse, etc. Please take a moment to pray for these families. They are smiling and trying to find happiness, but their grief is strong. Thank you.