Next week, Apr 3, will be the one year mark of our family’s life altering day and the beginning of a long healing journey, 5 weeks in ICU’s, 5 weeks in an LTAC and 6 months at Craig Hospital in Colorado. We are incredibly thankful for family, friends and strangers who have kept our family close to your heart.
In February, Seth ended up in the ER for possible complications of his Baclofen pump. Because his first pump had complications and ended up being removed, we didn’t want to take any chances. Thankfully, the MRI didn’t show anything too concerning so we will just keep an eye out for any other symptoms. A CT brain scan shows he has an enlarged 3rd ventricle which will be rescanned in 6 months for any changes (fun fact: the brain has 4 ventricles responsible for producing and circulating cerebrospinal fluid). He received some Botox to weaken specific muscles to improve range of motion and had his Baclofen pump refilled which involves removing the Baclofen currently in there and injecting a new batch and then it’s reprogrammed (this is supposed to happen every 3 months).
After starting PT, OT, ST, RT therapies at Swan and Rehab Without Walls, we are now at Barrow Neurological Institute twice a week but soon will start a more intensive program to be 3-4 times a week. They are working on strengthening his core to sit, stand and walk with assistance and equipment. His memory is still short but we are learning strategies to help him retain bits and pieces of the day. He is dependent on us for activities of daily living which is hard work physically and emotionally but we are thankful for the progress he’s making every day.
We finished a bathroom remodel of taking out a bathtub and replacing it with a walk-in shower. This was a huge improvement so that he can be rolled into the shower much easier.
Getting out to familiar places in the community, church and visiting with friends have been important to him mentally. He gets frustrated with how his body and mind can’t do the things he used to so we try to keep him encouraged and active like he always was.
Some of the highlights and pictures since the last update are:
Night to Shine, Tim Tebow Foundation celebration event for those with special needs.
Dancing at the Greater Phoenix Swing Dance Club. Video of Hannah and Seth here:
Visiting his grade school and high school.
Looking through and adding his own pages of the scrapbook many of you helped put together.
March is Brain Injury Awareness Month. This month recognizes not only awareness of TBI’s from accidents, falls, concussions, etc, but from strokes, tumors, lack of oxygen, etc. Seth’s TBI included DAI (Diffuse Axonal Injury- the shearing/tearing of the brain’s long connecting nerve fibers from when the brain shifts and rotates inside the skull) and anoxic brain injury (when the brain doesn’t get enough oxygen). These severe diagnosis’ along with other things he went through are why we prayed for healing cell by cell. Since we’ve been home, we’ve participated in outings with We Move Forward-a local brain injury survivor and family support group and we have a membership at Ability360, an incredible sports & fitness center specifically designed for individuals with disabilities.
During that first month while Seth was in the ICU, We took Annabelle for a walk in the stroller and Hannah said, you don’t realize how bumpy the sidewalk is until you take a walk with a sleeping baby. I’m going to add to that and say, you don’t realize how bumpy a car ride is when you are in a wheelchair (fun fact: Seth’s power wheelchair is 429 lbs!)
Last year, Easter came 2 weeks after the boys’ accident and I remember it being an incredibly sad day for me. Seth’s body was hurting and we didn’t know what the next minute or hour or day or future was going to hold for him. The only thing we did know, deep in our hearts, was that God so loved Seth, that he gave his only Son that because Seth believed in Him, he would have eternal life.
Seth has been thinking about his faith a lot, asking questions like, Do I have enough faith? Did this injury make me lose faith? Has this injury made my faith stronger? I assume that he is looking for constant reassurance of God’s promise at the same time his body and mind are being tested. Please pray for peace that goes way past his and our own understanding.
One year ago, Ben was also affected and hurt in this accident. He is a walking miracle and I thank God everyday for sparing his life too, so please continue to pray for peace for him throughout all of this.
And lastly, prayers are needed for Seth’s cousin, Ellis in Malaysia. He’s experienced more seizures and the doctors are still figuring out the right medications.
-Darcy
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