A Message from Katie Buck, mother of Alexander the Great!
Hey everyone, David here with a special blog post today. We recently received a message from Katie Buck, mother of Alexander the Great. For over two years now we’ve been blessed with the opportunity to support Alex and the Buck family with 5% of our revenue. Alexander is an amazing boy and the Bucks are an amazing family.
Katie wanted us to share this with you:
When Alex was first born, we were told we’d get probably 1-2 weeks to spend with him before he’d pass away. They said only 5-10% of babies with Trisomy 18 live to see their first birthday. It was completely devastating. The doctors were really opposed to treating him and it was even suggested that we take him home without a feeding tube so that he could die more quickly.
Well obviously, we couldn’t do that to Alex and miraculously, he is still here 29 months later and loving his life! Not only that, but we have a very good chance of having many more years with him. Perhaps even being fortunate enough for him to become an adult!
Alex is very delayed and will always have physical and mental disabilities. This creates some unique challenges for our whole family.
I’d like to share some of those challenges now and how the generosity of David and his company have helped us get the things we need for Alex.
My husband Ryan runs his own video production business. When Alex was first born, Ryan didn’t take on a lot of projects for several months. Besides the fact that we had so many new medical devices to learn how to use, Alex was getting tube feedings every 3 hours in the night for several months before he got an automatic feeding pump.
I also remember that Ryan was nervous to spend too much time at work because he wanted to spend as much time with Alex as he could. We truly thought he could die any day. As Alex stuck around, we started to get used to the idea that he might not be going anywhere for a while and Ryan resumed his usual load of projects. But somehow it seems like we’ve been playing financial catch up ever since Alex was born.
In the first year of his life, Alex was hospitalized 4 times. In his second year, only twice. Arguably, that’s pretty good considering the health challenges he could have been born with. But each time Alex is in the hospital, our lives sort of go on pause. Again, that has affected Ryan’s project load during those times. My husband is such a hard worker and has never cancelled a project because his son was in the hospital. He goes out, gets the job done, and then comes to the hospital so I can get a break.
Then there’s the sickness. Whenever Alex gets sick, it’s pretty much like having him in the hospital, but at home. We have all of the suction supplies, oxygen, and monitors of a hospital. These are supplied to us to that Alex doesn’t have to go to the hospital every time he catches a cold. When Alex is really sick, sometimes we have to tend to him every 30-90 minutes in the night. Again, this makes Ryan’s work life really difficult and it seems like he’s always working overtime during Alex’s illnesses.
Alex’s first winter, we felt like he was too fragile to stay in Iowa. His older brother Daniel was really cooped up right when Alex was first born (Alex was a December baby) because we didn’t want to bring any germs home to Alex. We couldn’t do that to Daniel for a whole winter again. So we decided to sell our house, and flee to Florida for 6 months. We wanted to give our family a better quality of life and protect Alex, but it was very expensive. Ryan was going to have to fly back and forth to continue to serve our Iowa clients, and the moving truck alone was $1500 each trip.
We didn’t know anybody down in Florida, and we were taking such a risk. We were really praying for confirmation from God that it was the right thing to do. That’s when a sizable financial blessing from David came in through Alex’s medical piggy bank fund and confirmed that this was something we really needed to do.
As it turned out, that winter Iowa had extremely high cases of RSV. Alex’s cousin (who is a healthy child) was hospitalized for it while we were in Florida. I shudder to think if Alex would have gotten it if we stayed.
When we came back to Iowa, Alex was older and stronger. But because he is growing, he’s needed more therapy toys and devices that aren’t covered by insurance.
There are tons of resources online for different therapy toys that can help kids with disabilities! Thanks to David’s ongoing financial gifts to our family, we don’t have to think twice when we get something new for Alex.
One of the challenges of having a delayed child is that they don’t outgrow baby toys as quickly. Developmentally, they just aren’t ready for more advanced activities. But they get bored after the same toys are around for months. Alex is 2 and many of his toys are still baby toys. Again, these developmental tools are not something we have to worry about because Alex has funds coming in to regularly switch those out.
Instead of oxygen, Alex has been using a CPAP machine at night to help him breathe since September. He knocks the mask of multiple times a night and sets off his blood oxygen alarms. His feeding pump beeps every night at 3:30 am as well to say the food bag is empty. As a result, we are always sleep deprived. It’s like having a colicky baby, but for over 2 years.
We’ve been on a waiting list for respite services since Alex was born. Because that has been too long for us to wait for a full night’s sleep, we decided to start paying nurse friends to give us temporary relief and come to watch Alex overnight a couple of times a month. This is paid for from the funds given to us by David from his Sunday Sounds patrons.
I cannot explain the quality of life this has given back to our family, and how it makes me a better mother to Alex. Alex has a special blender to blend food thin enough to go through his feeding tube without clogging it. This was paid for also by funds given to us by David.
In addition to the blended diet, Alex’s doctors agree with us that giving Alex breastmilk for as long as possible is one of the contributors to his exceptional health stability. We were able to buy a freezer for just donor milk with the funds given to us by David. When it is difficult to find donor milk, we have paid to have it shipped from out of state friends (which is very expensive). Again, this is made possible by David.
This list is getting really long, but I just can’t put into words the feeling of safety and security these ongoing donations of proceeds from David’s company has given our family. We have an awful lot of things to worry about with Alex, and because of David, the financial worries are greatly reduced. It’s also spiritually edifying in a very big way to see someone care so much about our son and our family.
Alex’s diagnosis is considered “incompatible with life” in the medical community and as a result over 95% of them are terminated before they are born. This causes deep hurt for us as his parents, that the world finds children like our son not worth fighting for. Somehow, when people reach out to help Alex grow and thrive, it heals that hurt in ways I can’t explain.
I can’t say thank you enough to David and the people who support his business. I just wanted to reach out and let everyone know how much their patronage helps us. Thank you also for your prayers and encouragement. It is humbling to see so many people helping Alex get the things he needs to grow and thrive.
As we at Sunday Sounds celebrate three years of business, I (David here again) just want to say from the bottom of my heart that we appreciate everyone who has made our success possible so very much! We are humbled by the opportunity to support the Buck family.
Thanks to Katie for the encouragement and for being so open to sharing with us!