Spring is around the corner and we are ready for warm weather and the cold and flu season to be over. Kate has had pneumonia twice and bronchitis once (at the same time she had pneumonia). The most recent time was the beginning of February. Keeping her healthy this year has been a challenge. She is constantly congested and requires a lot of suctioning. Keeping everything out of her lungs requires a lot of work from her aids at school and us at home. She hates being suctioned and sometimes she is so tired she can’t cough. Our efforts almost seem useless. As soon as we think we have cleared everything out, she is congested again.
On top of this, she is also having issues with her stomach. She randomly vomits. She typically vomits after we feed her but a few times it has been well after her feed. (She is fed a natural formula via her g-tube). We aren’t sure if her stomach is struggling to digested the food, so when we feed her it upsets her stomach, if her stomach is weakening and cant hold all of the food or if the congestion is the issue. Is she chocking on the mucus, thus causing her to gag and vomit, or if there is mucus in her stomach, upsetting it and when we feed her it makes it worse. We think she is gaging on mucus and vomiting but we aren’t 100% sure. We are suppose to see a GI doctor but havent received an appointment yet. For now we have taken each of her feeds and split them in two. Each container of formula holds 8.45 ounces of food, so we are feeding her 4 ounces at a time and give her 2 hours in between each feed. That does seem to help, but this morning Brock really struggled to keep the food in her. She was so congested and he was trying to suction her when she coughed, but it was obvious she was trying to not vomit. I hate this for her!! How miserable this must be for her.
Her seizures are not as well controlled either. Early on we were told that we would never have 100% seizure control and would have to decide how many she could handle each day, how many we could handle and how sedated we wanted her to be / how much medicine to give to her to control the seizures. Since her seizures don’t make her tired and she recovers from them easily, we have kept the medicine to a minimum (although you wouldn’t know that by looking at all the meds we give her each day, several times a day). Over the last few weeks her seizure activity has increased and they seem stronger. She cries out during most of them. I don’t think she is pain but the sound of her moaning is heartbreaking. We were praying that it was a short term issue but after a week and half of her having a dozen or more a day, and requiring rescue meds twice, we have elected to increase one of her seizure meds. We are waiting to hear from her doctor on which one to increase and the new dosing amount.
Other than that, she is doing well
We are still struggling to fill all of the nursing needs we have. Cheryl has been with us for almost 3.5 years and stays with Kate Sunday night – Thursday night/Friday morning. We couldn’t survive without her. Since Brock and I still work full time, we need to sleep, and having Cheryl with Kate allows us to get the rest we need and we know she is in great hands. We also have a nurse that works every other weekend but we aren’t able to fill the other weekend opening. It is frustrating but we feel so blessed to have most of the shifts covered.
We are in the process of planning the 3rd Annual Team Kate 5K and 1 Mile Fun Walk. This year we are adding a small kids carnival and PiYo class. We will also have a silent auction, raffle, 50/50 and bake sale. We hope you can join us on May 9th for the event but if you cant, you can do a virtual 5K. All the money raised is split between Kate to help with the cost of her medical needs and research endeavors. If you wish to sponsor the event, donate an item for the raffle, auction or bake sale, or volunteer to help, please let me know. Registration forms can be found on Kate’s website or you can register on-line. (www.HoldingOntoKate.com, https://teamkate.webconnex.com/2015)
Kate has received physical, occupational and speech therapy since 2010. The team of therapists have worked hard to keep her abilities for as long as possible, to keep her body flexible and muscles loose and find alternative ways for us communicate with her. They are a great group of women and the work they do with Kate has kept her physically stronger and mentally aware. Recently we were told that insurance has denied her therapy, therefore they are running things through her secondary policy. The secondary policy only allows so may visits per year, so rather than seeing the therapist once a week, she goes every-other week. I hate that insurance companies get to dictate the care she is able to receive but we are working with Kate at home to keep her flexible and engaged. I wish the insurance company could see outside their policies and the benefits of therapies.
Recently I have met two new Batten families and Brock has been conversing with a family overseas as well. All just received the Batten diagnosis. It breaks my heart to know another family is dealing with this horrible disease but it is such an honor to help them with their questions and encourage them. It always brings me back to the first few weeks after our diagnosis; such a horrible, dark time. I am so thankful God took all that darkness away and helped us find joy again. Not that we don’t have dark days or cry, we just have more to smile about than we ever knew! Please pray for these families. It is a lot to take in and a lot to adjust to.
One of the people who has had a positive impact during this period of life is a lady named Sally. She was a nurse practitioner at Nationwide and we saw her every time we had a visit with Kate’s neurologist. She specialized in Batten disease. She comforted us when we cried, laughed with us and gave us great advice with each new symptom, problem, etc. We saw her on February 24, which was the last day she was seeing patients before she retired. We are going to miss her. I hope she knows what an impact she had on our lives. We wish her nothing but the best.
One of the greatest blessings through this journey are the people we meet. The Batten families are an amazing group of people. As with all groups, you bond with some people more than others and one family that we have grown to love dearly are the Vigils. They were our buddy family at the first conference we attended. They helped us understand the conference, introduced us to other families, etc. They dealt with the disease with grace and compassion. Their daughter, May Payton, was in good health, considering she had batten. They included her in everything they did and we enjoyed seeing photos of them on Facebook. Two weeks ago, very unexpectedly, Mary Payton passed away. Her passing shocked the Batten community. I think we are all still in shock that their beautiful daughter has earned her wings. Please keep them in prayer (mom-Nikki, dad-Joe and sister-Maison). While we all know the end result of this disease, they had no warning that her final day was near.
Several of the Batten kids are battling illness and progression, including Westley, Olivia and Kaitlin. They could use your prayers.
I know the update on Kate isn’t great and we are struggling right now to know what to do to keep her comfortable and well, but I don’t want to leave you with doom and gloom. We could use your prayers for healing, knowledge, and peace. But know that while we are praying for these things, we are also praising God for the blessings he continues to give us. Today is Lauren’s 12 birthday and what a gift she is to us! I am so thankful for her, her health, her heart and her humor. She is an amazing girl and I love watching her grow up and seeing who she is becoming. I recently applied to Moody Bible Institute out of Chicago. I am anxiously awaiting their response to my application to become an on-line student for their bachelors program for Biblical Studies. Brock has started working on cars that have been wrecked and fixing them. He seems to enjoy this type of work.
I hope everyone is doing well and has a great spring and Easter. Thank you for your prayers and support. Hope to see you all on May 9th