Edward's Fundraising Auction

09/08/2025

Last Thursday Edward had surgery on both of his feet. After surgery he would not wake up so they wanted to admit him for observation. When I left the room to grab his wheelchair he woke up screaming and crying and then had a seizure. He aspirated and got fluid in his lungs. So they admitted him in the ICU to be monitored. The first few days he was out of it. Bad pneumonia, impacted bowels. Yesterday we had our first smile since surgery. Edwards still in the ICU. And probably be there at least another few days. When he is released from the ICU he will go to a regular room and then home. His seizures are stabilized. However, he still has pneumonia. Until he can keep his O2 levels up on room air we are not going anywhere. They are trying him on a nasal cannula today. His gut is full of gas so they are working on that too. They are going to work on getting him sitting up in bed today to help his gut.

02/28/2025

This is Edward during his Occupational Therapy. This machine helps him move his arms. It’s a passive motion machine that works with Edward. As he moves his arms, the machine kind of kicks in and helps. Edward is smiling when he is on it. And after being on it a few times he is working more on his own.

01/25/2025

Happy 24th Birthday to my amazing son Edward!! His strength and resilience makes me proud every moment of every day!

11/18/2024

Edward’s wheelchair is three years old. He has grown and sone of his medical needs have changed. He currently is getting pressure sores on his back in the chair he has now. He has a bad scoliosis curve and it presses right into the back of his chair. His last pressure sore took 10 months to heal. And he had to go to the wound care clinic at the hospital. So last week we had a wheelchair seating appointment. The base of his chair will stay. But they will replace his seat and back of his chair. As well as the foot box, head rest and seat belt and harness. To get his new seat made we placed Edward onto a seat and back form. They blow air into the form and then form it to his body. They send this information in and then after a few weeks they will have built a new seat and back for his chair.

10/24/2024

https://youtube.com/shorts/QG06m8EwQJI?si=JUZAxi08EQJbPaKa

Very excited about the potential of this for Edward. Hoping when it’s approved in the U.S. insurance will pay. If not praying for the lottery and an international trip in the future.

The Exopulse Mollii Suit, designed by Ottobock, offers a breakthrough in managing spasticity for those with cerebral palsy, multiple sclerosis, stroke, and o...

10/10/2024

So, Edward had his surgery on Monday, late afternoon. I’ve attached a photo after surgery. And one of a screen shot of his surgery description. I would have posted sooner, but he’s been in a lot of pain. He seems to have turned a corner today. Still needing pain meds, but not as much or as often. He wears the casts for 4 weeks. Then when they come off, we will get his hand splints reformed for his new wrist position. And he will wear those at night. We appreciate all your prayers. Keep them coming! ❤️

10/07/2024

Tomorrow Edward is scheduled for a tendon release on both of his wrists. For many brain injured people their muscles become very tight/spastic. In Edward’s case that is a challenge on his entire body. There are occasions when the tendons are so tight it can cause medical issues. Pain/ unable to use the area/pressure sores/skin breakdown/ etc…. In Edward’s case his tendons are so,tight it’s pulling his hands flat against his forearm This is painful, burns a lot of calories and for the last few months on Edward the skin is peeling. Which is this isn’t addressed can lead to pressure sores and infections. Edward’s pressure sore on his back took 10 months to heal. So it’s time to address his wrists. They will do a tendon release on both wrists tomorrow. We report at 11 am and surgery scheduled at 1 pm. Once surgery is complete Edward will be in casts from 4-6 weeks. Asking for prayers for the success and quick healing for Edward.

09/02/2024

Friday was BoTox day for Edward. When you have a profound Brain injury/CP you have a problem with spasticity. Tight muscles. And BoTox injections help with that. The injections are placed into the tight muscles and they help loosen up,the muscles. Generally, it works for about 3 months and then you have to do the injections again. When they are doing the injections, if you listen to,the video they are waiting to hear the static. The louder the static the tighter the muscle. It helps them inject the right muscles. So, during those three months you concentrate hard on theraoy to loosen the affected muscles. Doing this in therapy, doing range of motion exercises and splinting. Edward got over 30 injections. Not one complaint. He’s strong. It hurts my heart that he’s so used to these injections the pain doesn’t phase him. He’s so strong.

08/21/2024

Today Edward was supposed to have Occupational and Speech Therapy. However, when we went to his wheelchair van and tried to load him the lift didn’t work. It happens, unfortunately. So I had to go in and call United Access the lift repair people. So next Tuesday, we have a repair appointment. Which means we cannot leave the house with Edward until repairs are made. No therapy til then. So what do you do. You absolutely do not panic. You do not stress. You pivot. We got Edward into his hyperbaric chamber today. We will do that the rest of the week and next week. We will get an additional respiratory therapy done each day, and will do lots of home therapy range of motion exercises. See stuff happens, and you can either let it get to you or take a deep breath and keep moving. Edward’s 23 years old. We have taken a lot of deep breaths and pivots.

07/26/2024

Serial casting - on Monday we went to Edward’s orthopedist to discuss a possible tendon release surgery for him. When you have a brain injured person sometimes your brain is telling your body something that goes against what is best. At lot of times you will see someone who’s wrists are bent over. And this can cause break down on skin that’s rubbing against each other. (See picture below) Your brain thinks this is normal. And as a consequence the muscles and tendons are affected. On one side the tendons are tighter pullng the hands in. And the are looser/longer on the other side after the extended positioning. So to address this you either have surgery to do a tendon release, then casting for months to put the stretch on the hands/wrists to get them in better condition. You can either do surgery or serial casting. With serial casting you cast the wrist area, after stretching the hand to try to get the wrist in as close to neutral position as possible. With surgery you have to deal with anesthesia. Which in a brain injured person like Edward can be dangerous. So surgery is a last resort. So in discussing this problem with Edward’s orthopedist we opted to try serial casting first. So in Monday’s they casted Edward’s left hand. I requested we start with the left since that hand was tighter. After three weeks they will take the cast off and assess whether it was affective or not. If it was beneficial we will then cast his right hand. If not, we will look at scheduling surgery in October for Edward. In serial casting. You often cast several times. Each time stretching the area out then casting to prolong the stretch. In can take several times to achieve the desired results. I will say Edward’s been a trooper through it all. Only crying during casting because we were holding his hand and arm still.

07/18/2024

After 10 months we finally got Edward back into his stander today. He did great! Over 30 minutes at 45 degrees. The stander helps with his bone density, his digestion and elimination and his breathing. It’s so important. But when he got the pressure sore on his back in October, I never thought it would take 9 months to heal. !

07/17/2024

Edwards very patiently waiting for the Fire Department to arrive to help get him out of the van.