Feeding Fun

I thankfully sit at home today getting a feed with a borrowed pump as my buddy.

After spending three weeks in the hospital, daily paperwork and questions, we were CONDITIONALLY approved for funding to cover my feeds and supplies.

To say this whole process was exhausting, invasive and absolutely degrading is putting it mildly. To put a healthy person through their process would be a horrible experience but to put someone medically fragile through such a process is absolutely appalling. The stress caused by this has honestly taken it’s toll on me. It’s only been until now that I feel like I can even talk about this without crying.

From here on out, every single month I need to fill out more paperwork and report our income in hopes we MAY qualify that month. I honestly haven’t touched their process since leaving the hospital for fear of it triggering massive anxiety again.

Once Jeff gets back to work after his normal winter break we will very likely not qualify any longer for funding help. According to their calculations we should be able to take care of our family and bills, save for winter (oh wait, we’re not allowed to have savings) and cover all of these extra medical expenses. To say our system is broken, is an understatement. If this wasn’t a literal life or death situation, I would have walked away at the very beginning.

It is beyond frustrating that they will not consider our annual income but only monthly income. Anyone that understands how a seasonal business works knows that guaging our monthly income does not work. He works and saves so we can buy groceries all winter; not enough to cover a huge extra medical expense.

On top of this we are even dealing with major anxiety in one of our children because of this whole process.

‭‭Lamentations 3:20 NLT‬‬
[20] I will never forget this awful time, as I grieve over my loss.

To add to my feeding woes, after being approved by another department for a new pump, they gave me an 18yr old pump they found. It worked fine for a few weeks before throwing innumerable error codes that were irreparable. They ordered a new replacement pump but this is taking several weeks to arrive. Thankfully after 3 weeks of no feeds again, losing more weight, they found me a pump to borrow until my new one arrives.

‭‭Romans 15:13 NLT‬‬
[13] I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.

Beyond the cruddy details I am extremely thankful to be getting my feeds at home now. Hopefully gaining weight. I’ll know later this week at my next doctor appointment where my weight is. My scale at home shows gains. My body tolerates a much lower volume than my dietician would like me to take in, but I do what I can, until feeling full and nauseous. Any extra calories are helpful. I’m still trying to eat as much as possible each day.

I had a CT last week also, awaiting those results at my doctor’s appointment. I never enjoy the waiting period.

‭‭Romans 5:5 NLT‬‬
[5] And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.

I’ve been able to start a new treatment, IVIG. I’ve had three doses so far. They are an infusion given over two days once a month. I feel like it’s given me a little more energy but not noticing anything else yet. Thankful to not have any negative side effects.

Regular life has continued on as normally as possible. School happens each day, 4-H is in full swing, church and homeschool group activities round out our weeks. We’ve been bowling and enjoyed a family swim at St.Anne’s.

We enjoyed a beautiful Easter together with our family and friends and learned that we will be welcoming another sweet new grandbaby this fall. We’re super excited!

Jeff and our oldest celebrated birthday’s.

We’ve begun some seeds in the greenhouse and just ordered a few more. Hoping we can, as a family, find the energy for a garden. It’s something I grew up with and we’ve done every year with our children. I hate to give up the memories it makes.

Still loving our bedroom and bathroom. So thankful for this space.

Hoping for good results this week and looking forward to some warmer weather and sun.

‭‭Romans 15:13 NLT‬‬
[13] I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.