Spring is coming soon, right? Kate is so ready to sit in the sun and feel the soft, spring breeze. But who isn’t, right? Kate has done amazingly well over winter. She has avoided the flu and other viruses. Praise God! Over the last few weeks she has had a lot of chest congestion, and that has caused her to cough a lot. We tried to suction her and get everything out so it wouldn’t settle into her lungs but didn’t have any luck. Her cough is strong and productive and she is still able to swallow, so her doctor doesn’t think it is time to use a cough vest or cough assist machine. However, he was concerned with amount of congestion in her chest and length of time she had it, so he asked us to do breathing treatments 4 times a day so we could avoid pneumonia. Within the first few treatments we could hear the improvement.
Over the last week Kate has had issues with her feet swelling, her breathing being rapid and shallow and her heart rate being fast. We think the swelling has more to do with her sitting too long in her chair, so we aren’t too concerned. We are hoping that her breathing issues and heart rate are related to her congestion but only time will tell. We will see her neurologist in a few weeks and I will be asking for a pulse ox monitor like they use in the hospital, so when we have concerns we can monitor it with something other than the finger pulse ox we bought at Meijers.
Overall, Kate is doing well. She seems happy. She doesn’t smile as often as she use to, but I think that’s because she is losing her ability to smile, not because she doesn’t want to. You can see in her eyes she wants to smile, but her mouth isn’t able to do it. Sad!! She has an amazing smile. We are so blessed by her current status. She is fairly healthy, happy and fighting! We continue to pray and believe in her healing. But I am praising God for where we are at in this moment. Her current health status is nothing short of a miracle. I know that may seem like an odd thing to say considering she has a terminal illness and has lost so many of her abilities, but things could be worse! She hasn’t been hospitalized, is awake most of the day, tries to interact with us, enjoys music, school, her family and her favorite tv shows/movies. We are able to take her out with us when we want to go out to eat or run other errands. I don’t take any of this for granted! Especially after the last three weeks!
A few weeks ago I thought to myself, “for as horrible as this winter has been (weather), the Batten kids have done amazing!” Normally winter is very hard on the kids – lots of illnesses, hospitalizations and deaths. I dread the winter months! However, this year, the kids seem to do better UNTIL the end of February – beginning of March. Over the last few weeks several kids have required medical attention and we have said good-bye to too many children. Some of the kids we have met, others we haven’t. With each death we mourn and pray for this disease to go way. One might think that we get use to it, for lack of a better term, but we don’t. Every time we hear of a kid passing away, we are dumbfounded at how it could happen again, and try to make sense of it. Our hearts break and tears drip from our eyes as we think of the parents, grandparents, sibling, etc. who will forever feel a hole in their heart.
Westley is currently in the hospital. I try to not bother his mom too much for an update, but it is all I can do to not check Facebook or text her for one. We love Westley and his family and are praying and believing that he will overcome this situation. He is a fighter and has proven that time and time again. I am going to see him Friday. I wish I was going to their home or meeting them someplace other than the hospital, but it will be nice to see Westley, and visit with his parents. There are several other kids that are struggling. I am going to add a prayer tab to Kate’s website. Please visit it and pray for those kids as well, like Olivia, Jake, Seth, Rex and Casen.
We started putting arm splints on Kate at night. I have been against these things for several months but I have seen how they have helped her. Her hands muscles are more relaxed, allowing her hands to be open more often (not in a fist). They don’t seem to bother her. She wears them while she is a sleep.
We had to change Kate’s emergency medicine. She had three episodes where she had status seizures. Her seizures would last 30 seconds and they would come every two minutes for 2 hours. We administered distate each time but it didn’t help. The doctor changed her to versed, which is not commonly used for seizures in the US. Apparently it is used in other countries, like Canada, as a rescue med. I had to go to Columbus (2 hrs from our home) to be trained on the drug and so far I haven’t found a local pharmacy that fill it if we need a refill. Hopefully it will work. I take that back, hopefully we don’t need it!
There is a family that lives within 20 miles of us and they had a son with Batten disease. Their son passed away and they were kind enough to give us their sons bathroom lift. Brock installed it last weekend. This should make giving Kate a bath a lot safer. It wasn’t too hard getting her into the bathtub, but getting her out when is wet is difficult. We are so thankful for this gift!
We also got a new stander for Kate. It is so important for the kids to get out of their wheelchairs and stand. This keeps their bones strong, the digestive system working, etc. She seems to enjoy standing. It seems comfortable and she seems to like being upright. The stander is approximately the size of a space shuttle. Okay, not really, but it is huge. I wish we had a room where we could store all of Kate’s equipment, supplies, etc. Right now we have stuff here, there and everywhere! This is something we bought with the funds that were raised at last year’s benefit, so THANK YOU to everyone who came out and supported us.
We have a new nurse that works every other weekend. She is from an agency and the agency seems to have some management and communication issues, so we have had a hard time keeping a nurse on staff. We are praying that she stays! There were a few we were glad to see go, but others we really liked and trusted. Rhonda, the new nurse, is great. She is a Christian and is very kind to Kate.
Lauren turned 11 last week. I am still amazed that she is 11. While I love seeing her grow and developing her own ideas and opinions, etc. I am sad that she is already 11. How did this happen? How can I slow this down? In 7 years she will be 18 and that will be here before we know it. I am so blessed to be Lauren’s mom. She is amazing! She is funny! She is compassionate! She has a million great qualities! I am looking forward to seeing who she becomes and the things she accomplishes, but I wish time would slow down a little!
We are in the process of planning the 2nd annual Team Kate 5K. The date has been set (May 3) and the team is working hard to ensure all the details are tended to. We have some amazing sponsors! We decided to not do the traditional benefit this year, so at the 5K we are doing some raffle items, 50/50 drawing and a bake sale. We are excited and hoping the turnout will as amazing as last years 5K. If you wish to run in the 5K or want to be a virtual runner, you can find the forms on this website. There is a tab/page titled 5K forms. We would like to thank, in advance, everyone who supports our efforts to raise money for research and for Kate’s medical costs/needs.
The annual BDSRA conference is in Columbus this year. Since it is in Ohio, the Ohio chapter of the BDSRA is helping plan it. I think it is going to be great. I am looking forward to seeing everyone again, especially the kids.
I had a few speaking engagements this month. I spoke at church, on the radio and at a women’s conference. I had a few other scheduled, but due to the weather they were canceled. Hopefully they will get rescheduled. Each time I speak I realize how much I enjoy sharing how amazing God is! Hopefully one day this will be something I do on a regular basis. Right now I am considering going back to school and have a few colleges in mind that I would like to attend. I really want to go back and get a degree in Biblical Studies, Biblical Ministries or a dual degree. I have a desire to learn everything I can about the God, the Bible, etc. I believe these degrees will help me with my ministry. The only concern I have with going back to school is the cost. I will need to find some grants and scholarships otherwise this dream will be put on hold. Praying God makes a way if this is His desire for me.
I hope you are all doing well and had a great winter! Happy Spring!
(Please remember to visit the prayer request page on Kate’s website)
Thank you again for your support and prayers! We are so blessed by all of you!