We're a go...maybe??

 Lillian's scopes have been scheduled for 5/21 pending a blood test result and the approval of pulmonary and cardiology.  That's Dr Lungs and Dr. Heart.  We had a work in appointment with Dr Blood Monday morning at 900am.  He was a new to us provider in the group.  I liked him, he did not rush and took his time with us which I didn't expect.  He also questioned my about her some of her physical issues such as her brachial plexus palsy and her crippled fingers. He decided she should see a rheumatologist.  Yet another specialist. I kind of laugh as I contemplate it.  

By the way, she'll be 18 this year.  We will need to get a lawyer and become her legal guardians.  I'm not sure how that will work considering we don't have money to pay an attorney.  Pray about that would you? It is something we HAVE to do. There isn't an option.  Also, turning 18 makes her a legal adult.  I'm learning that her specialists may all have to transition to adult medicine.  I'm just telling you, all of this is overwhelming.  It is A LOT.  I'm writing about it so I can unravel some of it from my brain.  

By the way, 18!!!  She'll be 18.  I'm grateful.  God is good.  

Dr GYN and Dr GI visits

 Lillian had a visit this week with her GYN dr.  She has missed mutliple appointments for various reasons on their end as well as her being sick.  They have decided to give her depo shots every 3 months to see if that helps reset her body and then space the shots back apart.  If that does not help her they want us to consider an IUD.   Secondarily, she ordered another bone density scan because Depo can affect the bones.  

We saw Dr GI today and he felt she looked good and blood work has been good.  As we left, they gave us a letter giving us the date of her scope.  It is May 21.  Please pray she is able to get this scope done.  It is well overdue.  Again, due to recent illnesses her pulmonologist has not cleared her for general anesthesia.  

We left and scheduled her follow up appt and went to lunch where she had a total breakdown with huge tears as she questioned me about the procedure.  She also doesn't want to stay in the hospital which is a possibility depending on her other specialists.  This is not typical for her.  I told her not to cry because it wouldn't hurt and then I said, go ahead and cry, it's ok to be afraid.  Heart.  Wrenching.  

He asked us before we left if we had any fun summer plans.  How do I answer that question other than no.? No, we don't.  

In case you're new here, I have been Lillian's primary caregiver her entire life.  I could not return to work after her birth.  By the grace of God and his provision over the years through friends and family we have stayed afloat.  And that is still true today.  

That's the update this week.  Please pray for her to stay healthy.

Cancelled appointment, Infusion, Is anyone among you in trouble...the cough and snot express

 I know the title is a bit of a ramble but stay with me. HA!  Let's start with the cough and snot express.  For over a week and a half Lillian has battled a nasty sinus infection, which inflames her asthma, which requires more treatments.  Today, she is slightly improved, and by that I mean I have not needed to give her round the clock mucinex.  We tried to take a walk today and about 10 minutes in her coughing was so bad we had to stop at my daughter's house and have another daughter take us home.(after baby snuggles, of course).  In light of her feeling so crappy, I canceled her one year appointment with the hematologist.  It is already rescheduled, so that lies ahead.  She had her infusion, where they put us in isolation because of her copious drainage. ( the team still wanted her to have her infusion).  I wish every infusion ran so smoothly.  One IV stick.  Everything flows so well, but man it makes for a LOOONNNGGG day.  It doesn't help that sleep has been pretty sketchy with the CASE.  (figure that out? See title) I'm tired.  Can you tell? A little punchy, I might be. 

So this morning, I called in her inhaled steroid for refills, as we ran out over the weekend and they don't deliver on the weekend anyway since we now have to get her Pulmicort from UofL pharmacy.   The very nice lady calls me back and tells me it's being rejected by insurance.  I was literally sitting at the table spending time in my Bible and study and I was reading this scripture when she called me with this information, "Is anyone among you in trouble? Let them pray." Now that is only a portion of James 4:13-15.  Not to get too lengthy, but I struggle with growing short with people when things are constantly a problem.  I just kept laughter in my voice (we've gotten this med from the same pharmacy for the past two months no issue) and in the back of my mind kept thinking the Lord is going to work this out.  I prayed because I was in trouble.  She needs that medicine.  The girl put me on hold for over 20 minutes and as I attempting to place Lillian on her vest and breathing treatment, my cheek hung up the phone.  Now, no one called back most of the day.  I check my email and this girl has emailed me to say everything is fine and the meds will be here Wednesday.  

I recently, tearfully shared with a friend that I feel like I'm having a harder time handling all the things.  I don't know if it's aging, discouragement, lack of sleep, financial hardship, medical hardship or just all of it.  All I do know, this life is temporary. My struggles hopefully help to bring forth the kingdom principles. Because we know that all things work together for good to those who love the Lord and are called according to his purpose.  Romans 8:28 He knows tomorrow.  I don't.  He's the provider, I am not.  He is the healer.  I'll keep my eyes on him and try not to look at all that other stuff.