Member Spotlight: Max

Date: 01/09/18

January 2018: Update on Max 

It's fun to see Max continue to unlock his potential.  We put this video together to show you just how well he is doing. Thanks to his family for spending the day with us and allowing us to tell their story. 

 

Three-Year-Old Max Fighting Challenges with Help from Family and Sunflower

Written by Charles Ulrich

Our son, Max, was diagnosed with non-genetic cerebral palsy (CP) at 6 months.

Max had five hemorrhages on his brain from the birthing process. He spent a week in the NICU and was sent home with no devices despite his injuries and diagnosis with seizures.

He suffers from neurological damage in the forms of: dystonia, seizures and spasticity, and the brain injury causes quadriplegia. He is nonverbal at this point, and we are learning the extent of the damage as we continue to find out all of the muscles in his body that are affected by the CP.

A week-long study in the hospital revealed that Max loses control of some part of his body every 15 seconds. It also revealed that his seizures or spasms are not genetic. We do not know the extent of his mental or physical developmental damage at this stage of his life. What we do know is that his goals in therapy are to work to safety first.

Life before Sunflower/KanCare - 'We Were on the Verge of Failure'

Max’s mom, Tiffani, logged more than 85 hours just trying to get things sorted out with the insurance and hospital on the cost of Max’s birth. That is only one instance!

We have story after story of fighting for every piece of equipment, therapy and surgery.

Neither Tiffani nor I had people in our lives who had been diagnosed with disabilities and needed extensive care. This experience was and continues to be a shock to us. As such, we didn’t have people to turn to for help.

We didn’t know what was available for help. Please don’t mistake this as not trying to find help. We sought help. We applied for help and services and kept getting denied, and we couldn’t understand why.

We were told repeatedly that we didn’t qualify for anything because he wasn’t “disabled” enough. We were told that if he had been sent home with a monitor from the hospital or if he had a need for a feeding tube that we would then be eligible for help.

The fact is we were being destroyed financially so that our son might have a chance of learning simple things to “normal” people, like how to swallow his own saliva, sit upright, communicate basic needs, or open his hands.

We were taking him to between six and nine appointments a week with co-pays ranging between $20 and $200 on top of medications and prescriptions.

That translated to more than $400 a month on average for only his care (and didn’t include the three others in the house). He was also going to the hospital for emergencies once every two months.

At the time, I was working nights, days and whenever I was needed, while being on-call 24 hours a day. I also was with Max at as many appointments as I could because I know that ultimately he is our gift that we are responsible for. The more we could learn from his care workers, the more we could work with him on at home, and we did.

Stretching in the morning when he got up (when I got home from work) combined with stretching in the evening (before bed and I went to work). The painstaking process to eat meals and Max being so exhausted from trying to chew, swallow and control his body that he was too tired to play were hard.

I also remember that he was not sleeping through the night, and none of us would get more than four hours of sleep in a stretch. Part of the reason for this is that we never knew when he would choke on his saliva, aspirate, or stop breathing when his mind would stop telling his body to breathe.

On my “weekends,” I would continue on my schedule and make sure that at least two nights a week Tiffani was able to rest through the night. On my work days and weekends, she would do her best to make sure that I had time to sleep during the day. I would cover nap times so that she could sleep.

All the while, we were continuing to care to the best of our ability for Max’s brother, who is two years older.  We were beyond exhausted. We were beyond tapped. We were on the verge of failure.

Sunflower/KanCare - 'Peace of Mind'

The truth is that we are not sure when we were accepted with Sunflower/KanCare. We just remember what it felt like to have relief.

Our Sunflower representative, Jennifer, has been in our corner supporting us, making phone calls, working with us, educating us on what is available and what is not. She has been relentless in helping us. If something is not available to us, she has worked to help us think of other options. She has treated us as people, a family, and our son as a person and not a statistic or clinical case.

Tiffani described the first time of having a phone call made for her by Sunflower as “a warm hug.” It was, and continues to be comforting. There are no haggling phone calls with insurance companies, hospitals, doctor’s offices, therapists, etc. We have peace of mind for us and for our son that when he needs something it will get done because of Sunflower and KanCare.

We are being helped. We continue to work with Max at home, including his brother in the work.

Max is thriving. He is learning how to take care of himself and work out of situations that are unsafe for his body. He is getting stronger. He is an amazing child.

He is just beginning to unlock his potential, and it is being unfolded through the help of Sunflower/KanCare. It is making a difference, not only for Max, but us and the people who have been lost in the chaos that we are now helping.

Grateful,

The Ulrich Family