the next day...

After not so many hours of sleep last night I got up this morning and...well...nothing had changed. The dishes still needed to be done. The laundry still needed to be washed an hung to dry. Meds needed to be given, tube feedings continued, sheets changed and baths given. Through it all, Miss Courtney was smiling. 

It's funny how in one afternoon, life is flipped all around, and then the next day you have to get up and just keep moving. There is much life to be lived my friends. There is a young woman whose birthday is approaching and we are gonna celebrate the crap out of it. 

Jerry and I are making a bucket list of things we want to do with our daughter, like put her feet in sand by the ocean and watch the sunset. Take her to the Shenandoah Valley in the fall when all the leaves are changing, apple picking and long walks enjoying the beautiful outside. Make a pilgrimage to the grotto at Mount Saint Mary's and spend a little time reminiscing about our time in Lourdes. 

Your words of comfort, encouragement and prayers are such a balm to our hearts. We are so blessed. So very, very blessed. 

Many of you have asked how you can be of assistance as this transition with Miss Courtney is underway. The timeline that was given yesterday was one to three years. Now we have been told she was on her way up to the Lord before and she has pushed through each and every time. 

What's different this time? Well her liver and kidneys are not in the best shape. Her weight is not good and her lungs are scarred. Other than that, she is happy, eating whenever she wants and not in any pain or discomfort, so we march on. 

There are two high priorities for her care at the moment. Getting "Big Bertha" the Wheelchair Van back in action and getting Miss Courtney a better hospital bed. Both of these things will be needed in the months and year ahead. We also need to continue with her PT to help strengthen her bones and stretch her back with her scoliosis. 

The van repair is approximately $970 and change to replace the remaining ignition coils so everything is back up and running. The bed that we would like to get has an in bed scale which is crucial for her care right now. It also has an air mattress that will help with the pressure points she has on her bum and back. I now turn her two or thee times during the night so she doesn't have any skin breakdown problems. 

The bed has been denied through insurance because she has an "old school" hospital bed and they don't see "the need" for a new one. Sigh...I am not surprised, but my frustration level is rising by the hour. We have had the other bed for over seven years now and it's just not going to cut it as we go forward with this journey of ours. 

After prayerful consideration Jerry and I had thought to try to raise the funds to purchase the bed directly but when I tell you the cost, you are going to pass out. We just don't think in this current environment we could raise enough to cover it. Are you ready??

This beautiful bed with an in bed scale and air mattress system that will help keeping her skin clear of breakdown and infection is a whopping $16,890!! The price tag is insane but the bed is the one she has when she is inpatient in the hospital and she does very well with this system. I can lift it high enough to change her with ease and cleaning it after accidents and is a dream. I can also get an accurate weight without any lifting which is going to get more challenging for both of us. 

Since the medical team is projecting 1-3 year life expectancy at this point, renting a bed isn't finically feasible because we would pay for almost three beds by the end of the time frame. Any ideas my friends?

Now I don't quite know what to do. Open a fundraising effort or take our chances with what we have. There is egg carton foam and other precautions on Courtney's current bed but she is going to need more than that in the near future. We want to be able to care for her here at home so we are going to have to figure this one out. 

Miss Courtney does not require hospice right now. I am able to care for her at home for the moment and that's how we want it to be for as long as we can. They will be brought in if needed as we go along. 

So this is where we are today. If you have recently won the lottery and are looking to do a good thing, let me know. If you are able to help with the van repair, the button is below. If you are willing to pray specifically for these two needs, I would appreciate them all.

As for me and Miss Courtney, we are going for a walk.