Infusion #3 plus a little extra somethin' somethin'

 Lillian had her third infusion today.  Everything went well.  One stick for the IV...woot!  I guess I thought since she had had no reactions that we were out of the woods for reactions...but no.  She can still have an allergic reaction each time.  She will get tylenol and benadryl before each treatment and they have more benadryl and epinephrine on hand if she does react.  They mix her dose new each time we are there based on her weight.  

After many, many phone calls and pharmacies. we still can't get her breathing treatment antibiotic, so the dr. pulmo wanted her to have a baseline EKG and then if he is ok with how that looks he will put her on an every other day antibiotic that will go in her gtube.  I just hope that doesn't add to the GI issues. We were able to go right upstairs in the center and do a walk in EKG and it literally took two minutes.  Waiting to hear from them about if we start the medicine.  

The trip home was supposed to include a stop a LJS per her request and we stopped at one and they were closed for a water line issue...which was apparently my fault.  She cried, wouldn't speak to me, and was very unhappy up until a couple hours ago.  Come to think of it, she was mad at me on the way there too because I wouldn't let her take multiple bags.  Mind you, the backpack she did take was so heavy she could barely pick it up and she never, NEVER got a thing out of it the whole time we were there.   So, mostly a good day.  

We did have to pay out of pocket for her med that we gave wrong, but that's just how it goes sometimes.  

GI checks in

 Friday Lillian had an appointment with her GI doctor. She still has some thrush in the mouth.  Her steroids ended Sunday, praise the Lord.  That poor girl was a mess on that stuff.  Her inflammation markers have returned to normal.  Her hgb is normal again.  That being said, I realized today, that we've been giving her triple the dosage of iron she was supposed to be getting...#winningatmotherhood.   She was getting it 3 times a day originally and when they sent in a new script, I noticed the dosage change but not the frequency.  I've had to reach out and share that with GI, which is unnerving...but it happens.  No harm done I guess.  She has her third treatment Wednesday and then we will space out to every eight weeks. I had really hoped and prayed they would say we didn't need to continue, but alas, kids don't go into remission in the same way adults can.  He also stated this isn't something she will be able to stop.  So,  we keep on keeping on.  He was not concerned with her (what I consider) excessive weight gain and he wasn't completely pleased with her bowel movements so I'm going to have send some photo evidence from now and then two weeks after her next treatment.  Good times.  

Her antibiotic breathing treatment is on back order for eternity.  Everywhere.  So now we will be getting it in a compound form that we will have to mix from U of L hospital pharmacy and I'll have to figure all that out on Wednesday while we're there.  

Our insurance tried to help us with not having to pay out of pocket for her stomach medicine, but to no avail.  We will still have to pay out of pocket and wait for reimbursement.  Not what I hoped for, but at least a great deal of it will be reimbursed in time.  

I was on the phone about an hour and half this morning trying to work through all these issues, plus getting her albuterol neb med order changed to the correct amount.  It's been a long day.  We had chiropractic appointments this morning as well, so a long busy day.  I hope all this craziness made some sense.  

We have upcoming kidney and lung doctor appointments in April, so lots of trips to KY coming.  Keep us in your prayers.

Alone but not

 There is a grief I'm wading through.  I think that is the name of what has been alluding me.  Grief and stress.  To be honest, I try really hard not to think of myself.....I try to think and do for others, because that is where God has my heart.  But, Lord, oh how there are days, like today, I'm wrapped in grief and feeling the deepest need for solitude.  A break from the stress that has weighed on me for so long, not just as a special needs parent, but as a wife whose husband was injured and down for months, as a homemaker who has grown weary in the doing.  As a Nana who wants to be present for those babies I'm blessed with.  A mom who wants to be a role model for her daughters, a friend who is compassionate and loving. A servant who never tires in service to the King.  I cannot see how or when the break will come.  So, today I am praying that God will make a way.  He will show me the exact time and he will make it happen.  Physically and financially.  

There is a loneliness in the life a being a caregiver to my precious daughter.  Sometimes, I feel SO alone.  I just remind myself there are people praying...there are people praying. Just grasping on to the hope that there are people praying on our behalf.  Then the Lord whispers...in my spirit, you are not alone, I'm right here beside you.  

We need each other.  We need to come along side each other.  We need to.  I need you to, I need to.  When the Lord puts someone on your heart, shoot them a text, give them a call, send them a card.   DO something.  Meet a need.  Just reach out. You'll be blessed and I guarantee you'll bless the soul you touch.