Winter 2018/2019 catch up post!

This Fall, a feeding tube was encouraged to get placed because food is not always going smoothly where it should.  We try very hard to stay ahead of the next change before its too late.  Brad’s speech therapist suggest that while his respiratory is strong to consider this surgery.  The tube can be used as much or as little as we’d like.  This allows him to enjoy the foods he likes and not waste his energy eating for things he doesn’t’.  The kids would each like one for the veggies!

Brad has enjoyed going to 76ers games this season.  This has been a great time out with friends and the kids..  Such special time for Brad at each and every game.

After Brad’s feeding tube surgery in the fall, we had OT and PT out to the house regularly.  It adds a lot of care and chaos to the schedule.  In December after a lot of input from his OT, he was fitted for his own wheelchair.  It is a BIG deal.  She felt his current chair was not supporting his body the best and it’s time for a change.  We are so grateful for the loaner chair he has been using from the ALS Association of Greater Philadelphia.  Going to the wheelchair clinic at St. Mary’s we felt prepared, Jenn the OT – gave us a list of items she felt Brad would benefit from.  In the past she used to fit clients for wheelchairs, thank you Jesus for sending her our way.  The chair should arrive around March 2019.  

Just before Christmas our mobility van took her last ride, she served us so well.  Having the ability to try things out in the van and see what makes sense and what we would like to change provided a tremendous opportunity to us.  We purchased a new mobility van and WOW, its great.  We are so thankful to cruise easily as a family, this pit crew is finely tuned and thrilled with the easy loading and unloading!   

We did get a chance to go to Great Wolf Lodge after Christmas.  The kids LOVED it, so many fun activities and they did a lot of exploring.  They have the most accessible friendly room we have ever stayed in.  Brads was in an infusion cycle and we just packed it an infused in the hotel and in the car on the way there – improvise and flexibility for the Frith’s!

New Year’s we stayed home, a change from the last few years.  We enjoyed visiting with our friends Jen, Seth and their family and had some tasty Middle Eastern food.  It was so nice to get a solid visit in and have the kids meet and play.

January 2019

In early January it was time for Brad’s next quarterly clinic visit.  When measuring his respiratory, the intake and exhale numbers had significantly changed.  I keep track and could see they were not steady.  Then the questions, are you short of breath…no, are you short of breath when you are eating…no, let me listen to you…..silence.  So crackle in the lungs is an indicator that the lungs are collapsing.  Not because the lungs are no good but because the chest wall is weak.  This is a tough thing to hear, this crazy disease has weakened the body to not support the internal organs as its suppose to.  The resolve is to have daily respiratory support.  Currently Brad wears his breathing machine (think CPAP) at night.  A secondary setting can be added for daytime use to inflate the lungs with a good breath per hour throughout the day.  We need to schedule with the technical that supports the breathing machine to come to the house.  Dr. West ordered a pneumonia shot and flu shot…which Brad does not believe in at ALL but she explained the respiratory risk of recovering from these illnesses is dire and will most likely look like a hospital stay.  He DID get the shots, not sure if that is a victory or defeat.

Jazz for Jay, we joined friends at this event to learn how a fundraiser works.  What a night!  It was full of introductions and lots of love for Jay, who is also living with ALS..  Through raffles, silent and live auctions over $120,000 was raised.  That is what is required for one year of his care.  His parents, live locally, and have been spearheading this event for 4 years.  We know we are heading in the direction of a fundraiser.  It is amazing how much can change just so fast.

The hardest part about winter is feeling stuck in the house.  With a wheelchair extra planning is needed when going out.  It takes time to buddle Brad up.  When the weather is a bit warm, we go out side – even just to get up and down the street.  It has been a challenge finding family and wheel friendly activities.  Most of the weekends have been consumed with basketball and gymnastics.  Most courts are easy to park on in a safe place.  Our gym has been exceptional in providing a seat for Brad where he can view Liberty clearly.  

While we continue to plow through life, we focus on our family and care for Brad.  It’s all consuming.  Thankfully we have an aid that comes for at least 12 hours a week.  This allows me to continue to work which is imperative for our future.  She helps with meals, showers, shaving, brushing teeth, itches, setting up to use the computer comfortably and a variety of other tasks.  Our friends help shuttle the kids to and from their one activity of choice – an outlet for them.  We have a family therapist that comes to the house and helps us with the hard thoughts and plan for easier ways to navigate changes before they hit us.  The support from our school has been available to our kids at a moments notice.  We continue to be blessed with meals weekly.  We are so grateful for all of this support, it helps.

Although Brad filed for disability in January, he continues to work after all its Brad!  His business partners bring him into the office on occasion and it is so refreshing. 

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