February 17, 2025
Sara has been off of daytime oxygen and was weaned off of her beta blocker at the end of January. Since then at home and at school, everyone has seen the real Sara reemerges. She has returned to being the talkative, interactive child we knew before her surgery. It took her a long time to recover from this surgery and now she is about 95% back to her normal. She is now able to start building her physical strength again by using her walker more and chasing us around the house. She also has started growing again. Since her pre-surgery measurements (about 4 months), she has grown about 2 inches in height and gained about 7 pounds. It's good to see her making healthy progress but every pound she gains right now makes it harder to take her to the places she needs to go and thé ones we would like to adventure to as it makes it more difficult for us to transfer her or move her around. We are still looking forward to getting a wheelchair van for her and hopefully will do so this spring. We appreciate everything each of you can do to help us with this goal.
January 19, 2025
Sara has been enjoying her return to school and normal life. She still has oxygen support but we're hopeful that she will no longer need it when we go to her next checkup. We have been looking hard at used wheelchair accessible vans so that they may be obtained with a lower price. We are hoping to make a purchase in the next few months so that Sara can be able to explore her world.Dad and I both have our own limitations and we have realized that if we have to transfer her to and from the vehicle and her chair that we can only take her out at a minimal level or none of us truly enjoy the experience. Getting her van will simplify the process to take her places and making each trip less exhausting and more fun.If she has a van, we will be able to put our efforts to exploring trails and nature, theaters, zoos, parades, powwows, and other events as they arise. We will be able to enjoy because we know we can easily load her up to get home afterwards each time.Please continue to help us in our efforts by sharing your prayers, donating when you can, and sharing Sara's story with others so they can join our journey. We thank each of you dearly for every effort to help.
January 1, 2025
Sara had a check up today. Cutting her oxygen support down to start weaning her off of it - she's doing much better now. We were all able to spend Christmas together and watch her get more active through her break from school. Sara also recently received her new Gait trainer and is now starting to walk around the house again which is helping build her endurance back up. 2024 was a good but tough year. 2025 still has a spinal surgery waiting for Sara but we hope to take a few months to recover and prepare while enjoying life and each other. We also are looking forward to some exploration and attending some events before we return to the hospital for the next surgery. Thanks always for any and all support to help us get a wheelchair accessible vehicle to help with Sara's travels for fun and medical purposes. We appreciate every donation, share and prayer, they all help us move towards our goal.
December 1, 2024
For Thanksgiving, we are thankful that Sara is home and healing. She had her follow up X-ray on Wednesday and she has been given the all clear. No more fluid in her chest that isn't supposed to be there. This also means she gets to drop one of the post surgery meds. And even though it took a long time, she should be back to school next week. Thanks for everything you do to help us give Sara her best possible life.
November 17, 2024
Today (11/16) was the first time we went out as a family again without going to a medical appointment or the hospital since Sara had her surgery. We went to one store for groceries and then went out to dinner which seems easy enough but let me breakdown the steps for everyone. We got Sara dressed to go out into the world and into her wheelchair and then had to transfer her from the concentrator in her room to a portable oxygen tank that we are able to secure in the basket under her seat. When we get to the car, we have to position her chair for the transfer, move the oxygen tank to the car and then transfer her into her booster seat in the car. After she is secure, we fold down her chair and put it in the trunk space of the car. When we get to the store, it's a transfer back to the chair which is the reverse process of putting her in the car. After getting groceries, we load them in the other side of the car from Sara and then reload her back into the car and load her chair back in. It was cold enough to keep the groceries, so we went out to eat which includes transferring her back out of the car into her chair, moving the oxygen tank to the chair and then going into eat. Tonight we went to a great place but they had not considered people in wheelchairs and only had tall tables and chairs. They were super apologetic but Sara was able to see us at the table from her chair and had fun smiling at everyone coming and going. We then put her and her tank back in the car, load her chair and go home. Once home, we have no transfer her back to the chair, collect her oxygen tank and take her inside. Inside we can do a transfer back into her bed as she was getting tired, move her oxygen back to the concentrator in her room and get her into her jammies.She enjoys outings like this and we are going to be taking her out at least once a week again but we are ready for the day when all of the transfer points will be a case of rolling her up or down the ramp and only needing to secure and unsecure her anchor straps. Thanks for all your support and letting me let you know what a trip out looks like for us.
November 10, 2024
Sara has a follow up in a few days. We're hopeful that all is going as well as it seems. If she gets past this appointment, then we get to start planning her way back to school. We do plan to wait a few months before starting the scheduling for her next surgery but her heart surgery was done as she needed it before she could move forward with her spinal surgery. She has had several small procedures that required sedation and two hospitalizations in less than 6 months. She still has at least 2 more surgeries to go over the next year or two to help improve her life expectations and enjoyment of life. She is a tough kiddo and we know she needs to just enjoy some kid time with her classmates. We also know that we must have a wheelchair accessible vehicle before her next surgery because we will not be able to load her in our current vehicle after she has it to take her home. Thanks for all your contributions, support and prayers, we appreciate them all.
November 6, 2024
November 3rd, Sara was finally able to come back home. All the problems are better now and we have our happy, smiling kid back home. As we now have to take oxygen with us wherever Sara goes, we have to plan our travel to include where to put her tank and how to load her without yanking her hose. These are moments when a wheelchair accessible vehicle would simplify everything. Her tank can sit underneath her chair so with it, we can roll her in and secure both the chair and the tank and go - saving time and our bodies while not risking separating her from the oxygen. Either way, we are glad she is back home and doing well.
October 24, 2024
Unfortunately, we are back in the hospital. Sara went to her follow up and had been struggling with recovery. It was found that she had a lot of fluid built up between her heart and lungs making it hard for her to breathe. Instead of going home, she was admitted and had a chest tube inserted to drain the fluid. She is uncomfortable and doesn't want to be here but is doing better. Hopefully, will not be here long but it depends on how she improves. Thanks for all your support and prayers.
October 13, 2024
Sara is home from her open heart surgery. It's moments like taking her home after a major surgery that we wish we already had a wheelchair accessible vehicle. It was difficult to get her transferred into our vehicle without hurting her and again to unload her at home. In these situations, any transfer for her is difficult but when you have to transfer with a small doorway that you don't step through, need to reach her into the vehicle and position in her booster seat, it's a lot of little things to watch for and hard on backs of those moving her because she is almost 90 pounds now and sometimes sticks out a hand or foot that can catch on the doorway. This time she cooperated but being able to roll her wheelchair in and secure it would have been much easier for us all. Thanks to everyone for your support in helping us move forward with the purchase of a wheelchair accessible vehicle for Sara.
October 3, 2024
Thanks for your support so far. Sara had open heart surgery yesterday (10/2). It was difficult but successful. She is resting comfortably and starting the healing.
