Tell us your child’s story.
Despite all this, thankfully, Ivy’s kidney and liver functions are normal. She has top notch care with her six physicians at Cincinnati Children’s Hospital and her doctors will not discuss the need for transplant until that time comes.
When she was almost 2 years old Ivy had a severe kidney infection from drug resistant E.coli. She was hospitalized for 10 days and 9 of those days she had a 104 fever. When she got home from the hospital we noticed that she could not stand on her legs, crawl or pull herself up. Prior to being hospitalized, Ivy was walking. We did notice when she walked she would drag her foot, walk on her tippy toes, and she fell a lot. These things were not concerning to us at the time, but after she was not walking after being hospitalized, we thought there may be something else going on. Her dad has some walking issues and we started to think maybe there was a connection. She was seen by a geneticist and neurologist at Cincinnati Children’s hospital and they came to the conclusion that Ivy and her dad had the same thing affecting their legs. Their belief was they had another rare genetic disease called Hereditary Spastic Paraplegia (HSP). This causes gait abnormalities and spasticity in her legs. She began physical therapy through First Steps. Her therapist with First Steps got Ivy into be a program at Bellarmine University with their physical therapy program. This is how we were introduced to her therapist at APT now, Amy Martin. Ivy was about to age out of the First Steps program and we were needing to find a place for her to receive therapy. We started to see Amy when Ivy was 3. Amy has put her heart and soul into Ivy from day 1.
When we saw Ivy’s spasticity was getting worse she had numerous rounds of Botox in her lower leg muscles with casting afterwards to try and relax those muscles and stretch them. In 2016 we started to see Botox was not as effective in treating her spasticity. It was becoming more difficult for her to walk using her walker, and she was having to use her wheelchair more often. We started to search for other options for treating her spasticity. For convenience, we decided to see a neurosurgeon locally about possibly getting a Baclofen Pump or a Selective Dorsal Rhizotomy. He felt the Bacolfen pump was going to be the best option for her because the Hereditary Spastic Paraplegia can be degenerative. If she were to get the Rhizotomy (clipping of spinal nerves to decrease spasticity) she would only get a year or 2 out of the surgery. We refused to believe that this was the only option and got a second opinion at Cincinnati Children’s Hospital with a Neurosurgeon. This Neurosurgeon felt Ivy was a good candidate for the Selective Dorsal Rhizotomy and in August 2017 she had the surgery that is changing her life! Ivy’s spasticity has decreased. She is now back to using her walker and standing tall and straight. She has therapy with Amy 4 days a week and will for the next year or more.
Why did you choose APT for therapy services?
We chose APT after meeting Amy at Bellarmine. Amy and Ivy have a special bond that has grown over the years. After seeing the wonderful care she has received, I would recommend APT to anyone who needs therapy services. Ivy also receives speech therapy through APT with Ellen Horton who is also wonderful. We love both Amy and Ellen. They are family to us.
What improvements have you seen in your child since they started therapy at APT?
Ivy has reached many milestones with Amy during physical therapy. Some have been fast and some have been slow, but Amy always is thinking ahead and what can she do more to help her progress and succeed. Ivy’s speech has improved from seeing Ellen weekly and her confidence is growing!
What has been your brightest moment along the journey?
We feel Ivy has had many bright moments in this journey not just one big one. It takes baby steps and a lot of hard work and determination to get to where she is now. For instance, since the Rhizotomy surgery she is able to do things she has not been able to do before. She would tell us and Amy, “I didn’t know I could do that!” That for us made it all worth it knowing she was improving and could see the changes herself. Right now, she is happy to be using her walker more at home, out and about and at school. Her big thing is to show us how she can balance without holding onto her walker. She is so proud and excited and so are we! Ivy is happy and gaining confidence and it’s a wonderful sight!
What advice would you give other parents who face similar situations?
Advice we would give would be to never give up hope and always encourage your child no matter what. If you feel like you are with a doctor and it doesn’t feel right get a second opinion. Don’t ever just settle. Fight for your child and get the answers you need. If we would not have gotten the second opinion, Ivy would not be where she is today. Ask questions no matter how insignificant you may think they may be. Always be an advocate for your child. You know them best!
Physical Therapist Amy Martin, and Speech Therapist, Ellen Horton see Ivy at APT. We asked them to share a little about their journey with her.
How long have you been working with Ivy and what improvements have you seen?
I have been working with Ivy since she was 2 and in about two weeks she will be seven years old! Ivy has had an interesting path with lots of progression and change. For a long time we have been waiting on doctors to help us come up with a plan for Ivy and in August of 2017 she had a Selective Dorsal Rhizotomy- a procedure performed to help reduce spasticity in her lower extremities. Since then Ivy has been receiving 4x per week therapy services with swim lessons on the weekends. She is so committed and is working so hard! I know it can’t be fun to have this much responsibility at such a young age just to be able to do what others do and usually take for granted. She has shown incredible progress thus far in her journey and I am so proud and delighted I wanted to take this opportunity to honor her hard work.
I have had the good fortune to work with Ivy and her family since August 2016. She has always shown an amazing willingness to work to improve her speech. Recently, she has also shown more of her developing spunky personality. She continues to be a sweetie, however, is also beginning to voice more of her opinions; feeling comfortable enough to volunteer information. Seeing her gain enough confidence to use her communication to shine has been an amazing journey.
Describe a little about your and Ivy’s relationship.
Ivy was initially very shy and quiet. I have watched her blossom and come into her own and we are buds. We sing and dance and she tells me stories and we have cried and laughed. We have been through a lot together. And we see each other most days of the week so we are pretty close. I have also developed a relationship with her family through all this. It’s my job to provide them resources for her care and educate so they feel supported in making decisions for Ivy. They have had to do that a lot and I hope that I have helped them to make that process a little easier. Ivy is a bright spot in my day and when she sees me she knows it’s business time and we get a lot accomplished.
Ivy is such a sweetie; always concerned about her family and pet cats. She shows trust in our relationship through her willingness to try techniques to improve her communication. Recently, she has opened up more by using her communication to tease and joke with others. It is wonderful to see her enjoy communicating with others.