Some very exciting news!!

It has been awhile since I last updated everyone on Kate, which could mean a few things – 1. Kate has been doing well, so there isn’t much to report OR 2. Things have been very busy and I havent had time OR 3. I’ve been lazy. Truth is all are true.

The summer was busy, especially July, and when I had time to sit down and write I was too tired to put into words how Kate was doing. Honestly for the most part, she has been great. I was thinking this morning about Kate’s current status and thanking God for how stable she has been. We are still battling her seizures but other than that she has been good. We havent noticed a progression in the disease or had to deal with new symptoms. She remains alert, most days, and happy. We still see her funny, stubborn personality from time to time and that brings a lot of joy to our lives.

Kate’s seizure control, for a batten kid, is good. She has on average five seizures a day. Each month we deal with her seizures going back-to-back (several seizures w/in a small period of time, which do not stop without medical intervention) for a prolonged period of time. Prior to June we used diastat to treat the seizures with no success. We would then head to the ER where Kate would receive meds through an IV. Finally, after trying a few different rescue meds, we have two on hand that stop her seizures and keep us from visiting the ER. We have come to the resolve that Kate’s daily seizure drugs will not prevent these once-a-month occurrence. Well, we had come to that resolution, until we were invited to participate in a clinical trial at Nationwide Children’s Hospital for Cannabis.

Nationwide was given permission by the FDA to allow 20 patients with hard to control seizures a form of Cannabis. The form of cannabis Kate will be taking contains 98% Cannabidol and less than 2% THC, which means she will not get “high” from the drug. Over the last several months Brock and I have read news reports and studies on cannabis and watched documentaries. We agreed that if Kate was ever offered the opportunity to take it we would do so. People with hard to control seizures seem to respond positively to the drug and have a higher success rate with it than traditional seizure meds. Considering all of the drugs Kate takes and types of drugs she is on, we feel that this route is safer for her body and will have a higher success rate. The study is for two years and is heavily regulated. It will require several visit, phone conversations, etc. but we feel beyond blessed that Kate was selected to be a part of this group. Over time, if she responds well to cannabis, we can decrease or even stop the regular seizure drugs she is on. The doctor also said that the kids who started cannabis last month are showing some improvements with muscle tremors and jerks. We are hopeful Kate will have the same response. Please pray with us that this goes well for Kate. We are praying that she responds positively to cannabis, does not have any serious, negative side effects, and tolerates it well. We are also praying that some of the positive side effects will happen, such as less to no tremors, jerks, etc.

Kate had a birthday last week. Hard to believe she is 8 already. Typically we celebrate her birthday by inviting family and a few friends over, but this year we elected to celebrate differently. Kate’s birthday is two days after our nephew’s birthday. Even though they were 14 years a part in age, they had a special bond, therefore we always celebrated their birthdays together. Over the last few years we also celebrated my sister-in-law’s birthday at the same time. As some of you know, our nephew, Dylan, passed away last December after battling cancer for three weeks. Since this was his first birthday in heaven, we decided to not have our traditional party. We felt it would be too hard to celebrate without Dylan. Brock, Lauren, Kate and I went to the Fort Wayne zoo and spent the together enjoying the animals, the weather and being together. It was a very nice day and something we will always remember. I was worried about how we would handle her birthday since she is now 8 and the average life expectancy for Kate is 8-12 years. Since her 7th birthday I have been anxious about her turning 8 but thankfully the anxiety has gone away. Rather than focusing on how long they say she will live, I am focusing on how well she is doing today and praying for the miracle of healing we so desperately want!

The end of July we attended the Batten conference in Columbus. As always it was a great time. It was nice to see everyone, catch up and make new connections. Since it was in Columbus and the Ohio Chapter was hosting we were busy helping with different aspects of the conference. It was nice being involved and working with the BDSRA, who did most of the work. As soon as the conference was over we were looking forward to the next one. Hurry up July 2015 :)

School is back in session and Kate has done well adjusting to the new year. Kate has always been someone that likes to go, go, go. So summer is VERY boring for her. We cant keep her busy enough or offer her enough chaos. Since school has started, Kate has been in a better mood, smiling more, etc. We worry about the germs and illnesses she is exposed to but she loves going and seems to benefit from the activities and therapies, so we send her. She did come home with a cold after a few weeks, but has recovered from it well.

Recently we had to let one of our nurses go. She was working every weekend and I found her sleeping. After watching the videos of previous shifts, we elected to go our separate ways. I was so angry. She was sleeping during every shift, up to four hours. She was setting an alarm on her phone so she would be awake and alert before we came to relive her in the morning. We really liked the nurse and were so upset that she didn’t treat our daughter’s life with respect. The majority of the time Kate doesn’t need anyone’s attention during the middle of the night, but when she does, it is imperative that someone be there to help her. The night I found the nurse sleeping I had told her that Kate had a bad day and asked her to watch Kate’s oxygen levels and seizure activity. Within one hour of reporting to work, she was a sleep. The more I think about what could’ve happened, the angrier I get. In my opinion, it was a complete disregard for Kate’s welfare.

Within the last 24 hours two sweet batten girls have gained their wings. Sophia and Ali are free from the disease and are running, playing and enjoying being free from batten disease. Since January 30+ children have passed away from batten disease. Please pray for these families.

All is well.

Here we are, heading into the middle of July. Time use to feel like it stood still but now it feels like it passes so fast and I can’t keep up. Hope you had a great 4th of July!!

Thankfully I don’t have a lot to report on Kate. She has been doing pretty well. We met with her neurologist a few weeks ago. We were anxious about the appointment but overall it went well. We had a lot to discuss and prayed that we would get answers that would help with Kate’s quality of life. After talking with the doctor for an hour we decided to increase two of her medications and change her emergency drugs (emergency meds/drugs are medications we give Kate if she has too many seizures back-to-back or if a seizure last longer than five minutes). These changes seem effective, so far. Her daily seizures have decreased and the two times we have had to give her the emergency drugs they have worked, which means we have avoided the ER for over a month. Praying this continues. Praying the status seizures go away. Brock and I made the decision to take Kate off of the hormone pill. We saw some side effects we didn’t like and didn’t see any positive effects from it. Kate is on so many meds, therefore we don’t want her on anything that isn’t helpful.

We got a call from Nationwide Children’s hospital a few days ago and they have a new medication they are making available to kids with hard to control seizures. The FDA hasn’t approved the drug but has given the hospital permission to allow 20 patients to trial the drug. It’s not an official clinical trial but for all intensive purposes, it is a trial. We are excited and nervous to be a part of the group trying the drug. Praying it will be a great option for Kate and hopefully it will allow us to decrease some of the drugs she is on.

Kate is sleeping a lot lately. She sleeps most of the morning and takes a nap in the afternoon. We don’t know if this is because of the medications she is on or if it is the progression of the disease. I hate seeing her sleep so much but I know her body needs the rest.

We recently went to Washington DC for a few days. It was nice to get away and spend time together. We went to Arlington Cemetery, a few museums and other national monuments. It was fun and relaxing! Kate did well during the trip. She tolerated the heat, being on the go and change in schedule. I am so glad we took the time to go and create some memories!

In a few weeks we will be attending the annual BDSRA conference. I am so excited to see the other families and catch up with them. It is always a good time and we come away feeling so blessed. Lauren is excited to see some of the friends she made last year and hopefully will make some new friends this year as well.

Hope you enjoy the rest of your summer and find time to relax and enjoy the beautiful weather.

Staring, teaching and accepting.

This isnt a normal post. I will update you on Kate within the next few days.

Over the weekend we went to Washington DC. Our vacations usually consist of going to the Batten conference, but this year the conference is in Columbus, Ohio, so we decided to take a “real” family vacation. We each had one thing on our list that we really wanted to do but other than that we were excited about not being on a schedule, not waking up to an alarm, and just hanging out. On our last day in DC we decided to go to the Smithsonian Zoo. The outside temperature was nice so we expected to see a lot of the animals. However, there was something else more interesting at the zoo than the animals.

From the time we entered the zoo it was apparent that Kate was more interesting than the pandas, elephants and tigers. We couldn’t go more than two minutes without someone staring at her. We are use to young kids looking at Kate and saying things like “what’s wrong with her”, “why is she in that (wheelchair)”, etc. What I am not use to are adults staring at her. Brock and I both said we should put a note on Kate that read “I am a person, not an attraction at the zoo.” Within an hour of entering the zoo we left. We left frustrated, mad and hurt.

I understand seeing a child in a wheelchair isn’t a daily occurrence, but when did we as a society forget that it is rude to stare? I understand why children gaze, but I don’t understand why adults are so fascinated by Kate and children like her. Honestly, I think anyone over the age of 8 should know better than to stare at someone, regardless of the reason why. By the age of 8 they have attended anti-bullying assemblies at school (which includes bullying children due to disabilities), and have seen TV shows that include disabled children, such as Sesame Street, Little Bill, etc.
You would think by now we would be use to people staring at Kate and some days we handle it well, but other days, it is all I can do to not scream at people when I see their eyes fixated on her. How can we teach people to be polite and not stare? In my opinion, it starts at home.

1. Parents need to teach their kids that staring at someone is rude. They need to teach their kids that people are different. Some people are tall, others are short; some are skinny, others are not; some walk with their legs, while others have prosthetics or use a wheelchair. You don’t need a special moment to teach this common courtesy. There are children books that show diverse characters, TV shows, etc. When you are walking the grocery store, at church or just out and about, you can take a moment to show how beautiful people are and how their differences make them special.

2. When a child says something like “what’s wrong with her”, don’t get embarrassed and try to shut them up. Rather, answer the question. Make it a teachable moment. While you are at it, show them how they are more alike than different. Say something like “look at her shirt, it is pretty?” I remember walking through a NYC hospital with Kate. We were staying for a few days so we had suitcases. A small child, probably not even 3, said to her mom, “what’s that?”. Rather than the mom answering the question honestly, she pulled her daughter closer to her and said “those are suitcases.” I don’t know who she was trying to fool, us or herself. We both knew the daughter was asking about Kate and her chair. She wasted a moment to teach her daughter. She didn’t do her daughter or us any favors by not answering the girl’s question. I am not offended when someone inquires about Kate. I would rather a child ask than stare. I am offended when a parent doesn’t answer the question and/or ignores the question.

3. Adults and older kids, I am offended every time you stare. You know better. I have a hard time believing Kate is the first person you have seen in a wheelchair. If you are curious about Kate, please ask. Come up to me and say “Your daughter reminds me of… Can I ask about your daughter?” or “your daughter is beautiful. What does your daughter have?” (BUT DONT ask me what is wrong with her. That’s offensive. Nothing is wrong with her. She is perfect.) I will gladly share with you what disease Kate has, direct you to websites, etc. Awareness is key!
I beg of you, stop staring and start educating your kids on people like Kate.

While am at, please stop using the word retarded to describe things and people that aren’t. I know I have posted on this before but people, including friends, still say things like “that is so retarded” or “they are such a ‘tard.” It hurts, its offensive and it makes me want to scream in your face. I am over asking people to politely to stop using the word in front of me. I will no longer be silent when you say it in front of me. I will be kind but I will ask you to not say it.

Learn as much as you can while you are young, since life becomes too busy later. ~Dana Stewart Scott

Concerns, Questions and Answers…

I started to write an update the other day and was interrupted when Kate had a seizure. The last few month have had a lot of ups and downs. The last two weeks have been the most challenging we have had in a long time. For some this may come as a surprise because when asked how Kate was doing I responded with “good”. Not because I was lying but because I know things could be worse and because 90% of the time “good” is true. We are not a family that focuses on the 10%. Thursday of this week was the breaking point. I have been calm, patient and optimistic that we would find an answer as to why Kate is having status seizures and why her two emergency drugs do not stop them. However, we were in the ER for the fifth time since March 22 because of status seizures. To make matters worse, on Tuesday Kate had two grand mal seizures. Those are the first two grand mal seizures Kate has ever had. Something isn’t right. We need answers and we need them ASAP. We have increased seizures meds several times since March, added a hormone pill because we thought maybe the seizures were due to her monthly cycle, and have added and increased her emergency meds. I am tired of having our efforts to give our daughter a life filled with quality taken from us. Monday we have an appointment with Kate’s neurologist and I am hoping we can get things figured out. Do we need to add a drug and remove a drug? Has her body become tolerant to one or more of her seizures drugs? Do we need to do an EEG?

Along with the seizures, we have had issues with Kate’s legs and pain. Not pain in her legs. Her legs and pain are two separate issues, I think. When Kate is sitting or lying down her legs will get very stiff and stick straight out. They shake and it is very hard to bend them. I believe it is spasticity. I also believe it is treatable, but we have to decide if the med they use to treat it is necessary. Meaning, will it cause her to be sedated; is it necessary to put more meds into her system, etc.? Kate has had two issues with pain since mid-May. I am not sure what is causing the pain. Tremors? Constipation? Nothing but her brain is sending signals so she thinks she is in pain? Something else? More questions and mysteries. More answers needed!!

Oh yeah, we are also having issues keeping Kate’s body temperature at a comfortable temp when she is outside. Even on a nice spring day, if she is outside for a period of time, her legs and face get very hot and the only way to cool her down is to bring her back inside. It takes her body a long time to cool down. We try to keep her in the shade but if the temperature is more than 70 degrees she over heats. It’s even an issue if we keep a blanket on her in the house. If she doesn’t have a blanket on, she is cold and has goose bumps, but if we put a blanket on her she gets very hot. We have been using a sheet when in the house. It seems to keep her at a comfortable temp. Some families use a cooling vest for their kids when they go outside. We haven’t needed anything to control Kate’s body temp until recently, so we may need to look into the vest for this summer.

If you could please join me in prayer for Kate’s appointment on Monday – answers for her seizures, pain, body temperature, etc. I would GREATLY appreciate it.

We are in full blown summer mode. We are preparing for VBS, Lauren and Kennah’s 3rd annual lemonade stand (all proceeds are split between Kate’s medical fund and the BDSRA – June 10), our mini-vacation to Washington DC and the Batten Conference. We recently bought an outdoor swing for Kate. When it arrived we thought it was so big and would last us a few years. We were shocked when we realized it fits Kate perfectly. Gulp… Hopefully she will get two years out of it because she loves to swing. She loves the breeze on her skin, the warmth of the sun and the motion of the swing. She falls asleep in the swing.

We have a new night nurse. She was working every-other-weekend, but we like her so much we asked her to work every weekend. She accepted! We are thrilled to have her as Kate’s weekend nurse. Our struggle is always with the agency. They have a lot to learn about how to treat their employees! When nurses leave, it’s not because of us, Kate’s care is too much, etc. It’s always because they hate the agency. I am praying this nurse has a better experience and stays with us for a long time!

This weekend is Batten Disease Awareness weekend. I hope to share pictures, websites, and information as the weekend progresses. Please feel free to share Kate’s Facebook page (Holding Onto Kate) and / or her website. The more we share, the more people learn about the kids and the disease, the more people care, the closer we are to a cure. Those that know, care and support the research efforts bring us one step closer to a cure! Please help us help the kids who are still fighting and those yet to be diagnosed.

The Batten Conference is the end of July! This year it is in Columbus, Ohio so we helping as much as we can. I am procrastinator so I am a being challenged to stay on task, especially when I am planning VBS, applying to college, etc. (I always over commit myself but I do better when I have a lot going on, or so I say.) The BDSRA has some great things planned and we are looking forward to the conference. Each year we look forward to seeing the families and reconnecting with those who walk the same walk as us (or have walked the walk). We are beyond blessed to be surrounded by a supportive family, friends and community, but the only people who can understand what we deal with on an emotional, physical, mental and spiritual level are those who live with the disease 24×7 like us. So to be surrounded by those families is an amazing feeling. They don’t flinch when we turn on the suction machine, stare when we tube feed or need to change Kate’s diaper, etc. It’s just comforting. It is also nice to get advice face-to-face from the other parents. And, of course, we love seeing the kids! It is great to see the kids and know they made it through another year, but it is sad to see those families that now have a batten angel and know their heartache is overwhelming, deep and beyond painful. Lauren looks forward to reconnecting with the siblings. I think she enjoys being around other kids who know what it feels like to have a batten sibling. They understand the pain, the concern and all the other hardships she faces on a regular basis. I think for a few short days she feels “normal”. I can’t say enough good things about the conference.

Thank you to those who text, message, call and reach out to us in various ways. We appreciate your concern, prayers and words of encouragement. Some days when the darkness of the disease is getting the better of me, I receive a message from a friend or follower, and realize we aren’t alone and we can keep going.

Deuteronomy 31:6 Be strong and courageous. Do not fear or be in dread of them, for it is the LORD your God who goes with you. He will not leave you or forsake you.”

5K Results and Update on Kate

Over the last few days I have thought about what I would say to everyone who supported the Team Kate 5K last weekend and I have struggled to come up with the words. Over the last few years there have been 3 benefits, two 5Ks and 3 lemonade stands and at or after each event we have expressed our gratitude, feelings, etc. So as I sit here looking at my computer screen I my struggle with what to say and how to say thank you in a way that doesn’t sound repetitive and hollow. I wish that the words had come to me over the last few days but I find myself speechless. Each time we start the process of scheduling an event we pray that people will have an interest in the activities that we plan. Whether we donate $100 to the BDSRA for research or more we advance the cause for a treatment and cure. So I say with a genuine heart, I say with every fiber of my soul, I say with love and humbleness, “THANK YOU”. Thank you to those who helped plan (Kaye Heilman and Crystal Dunlap), thank you to those who sponsored the event, thank you to those who volunteered at the 5K, thank you to those who donated raffle/silent auction/bake good items, thank you to those who couldn’t make it but donated money and thank you to those who ran, walked and/or biked at the 5K. Without each of you the events wouldn’t be a success. Without you researchers would have less funding to find a cure. I hope one day we can repay each and every one of you back in some way. I hope you had a good time at the 5K. If anyone has suggestions on how to improve the 5K, please let us know.

Attached to the bottom of this post are the results from the race.

Update on Kate

Since March 22 Kate has gone to the emergency room three times for seizure activity. Kate goes into status, meaning her seizures happen one after another with little to no break in between them. We administered two emergency drugs at home but her seizures continued. In the ambulance they administer valium via an IV and they stop within a few minutes. We have avoided the ER two times, which we are thankful for, but we are overwhelmed with trying to find the right combination of maintenance meds, emergency meds, etc. so we can always avoid the ER or better yet, avoid her going into status. Brock and I believe that her seizures are due to her changing hormones cause by puberty. We have asked her neurologist to put her on the pill. We are hoping the pill will regulate her hormones and either stop her from going into status or help us find a pattern on when she will have seizures so we can increase her meds during that period. Since we aren’t doctors we aren’t sure if this is a good plan or make sense medically, so we are relying on the doctors to help us determine whether or not this is the best course of action. We would appreciate your prayers for this entire situation.

A few weeks ago we received machine that helps keep Kate’s lungs clear by doing percussions on her chest. It seems to be helping a lot. She still has congestion and requires suctioning and at times you can hear the congestion settling into her chest, but the machine has lessened how often that happens. The machine, for whatever reason, is VERY expensive and we were told that insurance may not approve it. We were under the impression that it was approved prior to delivery, but that wasn’t the case. We were very concerned with we would pay for it. Yes we have money in Kates medical account but this would take a large chunk of the money and we want to ensure we spend the money wisely. We came home from work on Monday and waiting for us was a letter from our insurance company. Anxiously I opened it and read it. It was approved!!! Thanking God for this amazing blessing!

Overall Kate has been doing well and seems more responsive over the last week. Seems weird that she is smiling more and is more alert since we increased on her meds again. Usually that makes her more tired and withdrawn. So thankful for her smiles and the occasional “talking” we have heard lately. Its amazing how much you can miss someone’s voice.

Over the last two weeks five children have passed away from the disease. It breaks my heart to know that five families are mourning and learning to live without their child. Please keep these families in prayer.

Again, thank you to everyone who supported the 5K. Thank you for helping make a difference not only in Kate’s life, but in the lives of many children. One day there will be a cure. One day this disease may not even exist. Thank you for your support each and every day. Your words, cards, prayers, and random acts of kindness are never taken for granted and are always appreciated.

5K Results

Happy Easter!

There is reason to celebrate today – Westley, after six weeks in the hospital, is home. Westley spent 4 weeks on life support and truly is a miracle. He fought so hard and tonight he is resting in his own bed. When I think about all he has been through, I am reminded at how amazing our God is. We were fortunate enough to visit Westley, Tracee and Willie a few times. I know they received a lot of visitors, and we were so thankful they allowed us to be one of them. Westley is proof that prayers are answered and God is the ultimate physician.

The last several weeks have been hard on several Batten kids. Many have fought illnesses and seizures. Some days it is overwhelming and heartbreaking to scroll Facebook and see all of the sadness, scariness and loneliness this disease causes.

Kate has been dealing with her own issues lately. She has had a lot of congestion in her chest and at times isn’t able to cough it up and out. Her cough is typically strong and productive, but by the end of the night her energy and strength is gone, so her ability to cough productively is diminished. There have been a few nights where her congestion has settled deep into her chest and into her left lung, causing her O2 levels to drop and her pulse to increase. It is hard to know what to do when this happens. We can go to the hospital but am not sure what they would do that we weren’t doing at home. We placed oxygen on her, positioned her so her mucus could drain, and did percussion. Eventually she was able to clear her lung and her levels improved. In an effort to help keep her chest clear we saw her respiratory doctor and requested the coughing vest. The vest does percussion on her chest and loosens the mucus so she can cough it up and out and keep her lungs clear. So far it is working well and she is tolerating it. Lauren tried it on for fun and said it wasn’t too bad – comfortable and didn’t cause any pain, upset stomach, etc.

Kate also has had issues with her seizures. This isn’t new information but the reason for them is unknown. We thought it had to do w/ her monthly cycle, but it has become clear that the two are not related. On March 22 she had several seizures within three minutes so we administered her new emergency drug, Versed, and it caused her to stop breathing and her face to twitch uncontrollably. We immediately called 911. Within 45 seconds she was breathing and her face was fine but she was still seizing. In the ambulance the EMTs gave her an IV of Valium and she stopped having seizures. Based on her response to Versed we were given a higher dose of Distat to use if she had another cluster of seizures. On April 9 she started having seizures at 6 am and at 630 Brock gave her Distat. At 8 she was still having seizures, so I took her to the ER. As soon as they called us back her seizures stopped, therefore they didn’t give her any medicine. We were released shortly after arriving. This past Monday, April 14, we saw her neurologist and she increased one of her daily seizures meds. We are hoping this will stop her from having clusters of seizures, thus keeping us out of the emergency room. We also discussed what drugs we can use if she needs an emergency drug. Once again we were given an increase in distat and told to use it and if it doesn’t work, call 911 and administer Versed. The reason we are to call 911 before giving it to her is in case she has another negative reaction to it. The doctor trained us on how to administer the drug and believes that the changes she recommended will make the drug safe for Kate.

Once again we have a new nurse. The agency we are working with seems to have some internal issues, therefore it has high turnover. It is frustrating because we really want a nurse that will connect with Kate, stay long term, learn what is normal for her, what are seizures vs. tremors, and become a valuable member of her primary care team. The last several nurses have been incredibly nice, so we were sad to see them go. Our new nurse is very nice and I am praying she is with Kate for a long time. We also had to let go of a nurse who has been with us for two years. She worked every other weekend, but over the last year her attendance hasn’t been acceptable and we caught her sleeping. We tried to work it out and be accommodating to her needs, but eventually we had to let her go because we need someone who will be here when scheduled. We rely on our nurses; therefore we need people who are reliable, knowledgeable, and compassionate.

We are in the final weeks of planning for the 5K. May 3rd will be here before we know it. We are excited and hope it is a great time. Its not too late to sign-up! Forms are found on this website. If you cant run the day of or aren’t local, you can be a virtual runner. We will also have a few raffle items, 50/50 drawing and bake sale. If you wish to help at the event, please let me know.

I hope you all have a happy Easter and find time to celebrate our Saviors resurrection.

Good-bye Winter, hurry up spring!

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!

5K information and registration form (including virtual runner entry form)

We just started planning the 2nd annual Team Kate 5K. Provided is a link to the entry form. We will also have a 1 mile fun walk. Dog and bikes are welcomed on the fun walk. We will also have a bake sale, 50/50 drawing and raffle items. Hope to see you there!

We are looking for a few businesses to sponsor the event. Sponsors will be listed on the t-shirts and throughout the event. We are also looking for a few raffle items. Let us know if you have want to sponsor the event or donate new items to the raffle. Thanks, Team Kate – Kaye Otto Heilman, Crystal Dawn Dunlap, Brock Benroth, Ellie Benroth.

5k registration form 2014

Virtual 5k registration form 2014

Happiness vs. Batten disease – which wins?

Happiness… What does it mean? How does one obtain happiness? The definition of happy is “feeling or showing pleasure or contentment.” Happiness is the state of being happy. Why do so many people fight happiness? Why do so many people allow anger, jealousy, and bitterness take over their life? Why are some people only “happy” if they have something to be unhappy about?

In the last four years I have been asked why we as a family are happy. How do we maintain happiness in the midst our struggles?

Happiness vs. Batten disease – which wins?

I remember the day we got the diagnosis for our daughter Kate. Happiness was nowhere to be found. Happiness fled our home and darkness set in for a few weeks. Living, breathing, and merely existing became a chore. Tears were more common than smiles. All around us was darkness, fear, and hopelessness. We could have stayed in this state of mind but we CHOSE otherwise. Am I saying happiness is a choice? Yes, that is what I am saying.

(BUT before we go any further, let me say loud and clear that I am not saying depression is a choice. In fact, I believe just the opposite. Depression is a medical condition that requires medical attention, whether that be through counseling, medication or both. Our country needs to remove the shame from mental illness and allow those with it to be open and unashamed. This blog is about those who are healthy mentally yet they elect to be filled with anger, sadness and other dark emotions.)

We chose to find happiness and a way to live again. Kate had been given a death sentence but the truth is she was and is a live. We can hold her, kiss her, and see her. How many years will she live? I wish I knew. However, I what knew once the darkness started to move, and continue to focus on, is that she is alive today. We can chose to be miserable and see only death or we can chose to live, be happy and be thankful for today. Batten disease may claim her life, but it wont claim the hours and days while she is living. It wont claim our happiness. We chose happiness because anger, sadness and bitterness doesn’t bring quality of life but happiness, love and a positive attitude do.

More than happiness, I want joy. If happiness is a choice, isn’t joy. No! Joy is a gift from God. Happiness is like a fair weather friend; happiness comes and goes as life throws junk your way. What do I mean? You may be happy and at peace with life, but then the phone rings and you learn that someone you love has died. Happiness is now replaced with sorrow and you grieve. BUT joy is still there. Joy is deep within your soul and lights the way when darkness surrounds you. Joy is a gift that God wants us to claim. Joy allows you to smile when your world has fallen apart. Joy makes it possible for happiness to find you once again. If you aren’t able to find joy or happiness, seek God first. He is the joy, the peace, the light. Once you have Him, joy will fill you.

Romans 15:13 – May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.

Galatians 5:22 – But the fruit of the Spirit is love, JOY, peace, forbearance, kindness, goodness, faithfulness, gentleness, and self-control.

John 16:24 – Until now you have not asked for anything in my name. Ask and you will receive, and your joy will be completed.

So who wins, batten disease or happiness? Neither. Joy wins. Joy has filled our hearts, our home and our lives. Batten disease may win some of the battles and there may be days of fear and darkness, but my God is bigger than Batten disease and He has overcome this world. So today we smile, laugh and trust that Gods plan is right on track. We praise Him for the joy that allows us to get up each day and make memories with our family.

A quick update.

January was busy for Kate. She had several doctor appointments and her equestrian therapy started back up. Overall Kate is doing well. Some days she has a lot of smiles, and other days she is very somber. There are times she wants to smile but she isn’t able to. Her eyes light up but her mouth isn’t able to form a smile. This is something we expected, but again, something we dread. Kate has always had a radiant smile and with all that she has gone through/goes through, she smiles. Don’t get me wrong, we are still seeing smiles and think she still has the ability, however, the smiles are not as frequent.
We saw Kate’s neurologist in January and she was pleased with how Kate looked. We did adjust two of her meds to help with tremors and seizures. So far the changes have been good. The doctor also recommended that Kate sleep with hand braces on (similar to the braces she wears on her feet/legs every day). She showed us how Kate’s hands/wrist are turning in and how it would affect her if we didn’t put them on her. We have had the braces for a year or so but it felt cruel to make her sleep with them on. I just want her to be comfortable and sleep well. If she has a rough night of sleep, her seizures and tremors are worse. She endures so much when awake; I didn’t want to put her through anything else, especially in her sleep. Kate, once again, proved that she is tougher than me and can handle anything you throw at her. She is sleeping fine with the braces on and I have noticed that her hands are open more and not as tight.
We made an appointment in August to see the wheelchair specialists. Our appointment was in January, however, on our way to the appointment we were in a car accident. No one was hurt, but we missed our appointment. I was disappointed because I had some questions for them. Luckily after I made the appointment I found guy in Toledo that specializes in pediatric wheelchairs and fittings. He adjusted Kates chair in September and she seems to be comfortable and well positioned. We will see him again in a few weeks when we pick up Kate’s new stander!!!
In January we also meet with a local funeral home and planned Kate’s funeral. It was hard and tears were shed, but it was a relief as well. My prayer is that we wasted our time and money and Kate will outlive us. I haven’t given up on a miracle, but after watching Heath and Teresa plan Dylans funeral, we knew we needed to plan Kates now, rather than later.
Kate has started equestrian therapy again. I think she missed riding while the center was on a shutdown for the holidays. Equestrian therapy is so good for her core strength. Kate also does physical, occupational and speech therapy. I know these therapies have kept Kate strong and have improved her quality of life.
When school resumed in January, Kate was aligned with two aids. One aid works 3 days a week and the other works 2 days a week. The aids are with her while she is at school and tend to her needs like suctioning, oral care, diaper changes, etc. Due to the increase in Kate’s needs I asked the school to provide Kate with an aid that would be responsible for her and her alone. The other aids in the class room work with all of the kids and they are great. However, I worried that Kate’s needs were getting too demanding for the aids when they had six other students to care for. I was surprised by the schools willingness to provide an aid and how quickly they found them. Most parents have to fight for services but our school has been amazing. They listen to our needs and concerns and have Kate’s interest at the heart of what they do. So thankful and blessed!
There are a lot of events coming up and lots of opportunities to spread awareness about batten disease. February 28 is Rare Disease day. In honor of Kate, please share her story, her website and/or her Facebook page. Help us celebrate Rare Disease day by sharing Kate’s story. We are just starting the process of planning a 5K. We did one last year and we are looking forward to hosting another one in April. I will post details once a date has been confirmed, etc. If you are interested in helping plan, volunteer at the run, etc. please let Brock or myself know. Every year the BDSRA has a conference and each year we look forward to seeing our batten family. This year the conference is in Columbus!! We are so excited to have it close to home and to help with the conference. Because the conference is so close to home we wont have to take a lot of time off work. Typically we take a day or two travel to the conference. Since we don’t have to travel, we are planning a family vacation to Washington D.C. I cant wait to make some memories with the girls!
Thank you for reading Kate’s blog, for your prayers and support! We are blessed to be surrounded by so many caring people. Happy Valentines Day!