Is it well?

 Yesterday, I told myself over and over, in prayer, whatever we learn today, it is well with my soul. All day.  I chanted it over and over.  I got home, felt tears come and go but nothing every really came.  As I prepared for bed, I continued to talk with the Lord.  All I could think about was the woman with the blood issue that reached for the hem of his garment and was healed.  I had updated a prayer warrior friend and as I lay there, the tears, the sobs, they came. All I could say to the Lord is, it isn't well ..i lied. I had no other real thoughts other than I think the stress just poured out of me.  As I lay there, trying to cry quietly, (as one can who is sobbing) so as not to alert Lillian, my phone rang and my prayer warrior friend was calling.  She talked and I cried harder...silent mostly...I think.  She began to pray and as I listened to her words the sobs subsided, the tears slowed.  She asked me what she could do to help me and I know she meant it.  Honestly, I just don't know what help to ask for...if that makes any sense.  I remember telling her all I know how to do is keep moving forward.  Trust the Lord, keep moving forward.  

It takes me a little bit to wrap my mind around these situations.  I need to get a grip on them.  I don't mind sharing our journey, but I need to absorb and process it so I'm not crying about it. If anyone knows me at all, they know I'm not ashamed or embarrassed to cry, but I just need to process...

I had a stressful dream, but I do understand them as it applies to my current situation.

Life is hard.  God is good. I shall come forth as gold.

 We went to her appointment and there were no solid answers.  I gave a great deal of information about her history and basically answered questions. They repeated the blood tests that were done by the other hospital and got a lot more.  We won't have answers for about 6 weeks.  I messaged her today for some clarification on some things we talked about yesterday, but she is out of the office today.  

Hematologist Visit

 We spent an hour or so with the Hematologist Nurse Practitioner today.  (just got home) Basically, the drew the same tests plus a bunch more.  If the PTT they drew comes back high then she definitely has a bleeding disorder which could fall into a number of categories, which will require even more blood testing.  She did give the ok to give the depo shot for her cycles but also would like us to start seeing the pedicatric gynecologist due to the abnormal cycles she is experiencing.  That test will take 4 weeks to result.  The other test that was elevated is an indication of inflammation which is indicative of the her Crohns?  I'm not sure.  We will follow up with hematology in 6 weeks with a a somewhat better picture of where we are heading with all this.  

Remicade #5 plus some

 Lillian had her fifth infusion today.  They had quite a bit of trouble getting her IV in, but thankfully another nurse was able to get her on the third stick.  (who knew I'd be praying over needles?? Seriously, though, I've been doing that a long time)  The infusion went well after that, (can you feel the but?) BUT, she started having more bleeding today in her stool.  Her bloating seems to be worse this last week.  The doctor has asked us to keep a watch and hopes that this infusion will curb any further bleeding.  I am supposed to keep up with them and let them know how she's doing over the next several days.  His thoughts are that perhaps eight weeks is too long between treatments.  So, please continue to pray over her these next few days as we see what unfolds.  This is mentally and emotionally difficult.  

I struggled over the weekend as we received several new hospital bills relating to my ongoing urinary issues and Matt's new diabetic diagnosis.  We had received an unexpected financial gift the previous week to help with all the added expenses of the extra trips and meals, directly after that we got the hospital bills.  Tears stung my eyes as I spoke to the Lord about my frustrations.  We can't seem to get ahead without being knocked down in some way, shape, or form.  I cannot express my thoughts and frustrations adequately.  I spent the evening in worship in my living room and then Sunday morning the guilt of my doubts swept over me.  I asked him to forgive me.   I know He is already there but I get my ownself ( as my facebook friend would say) in the way.  I fail everyday, but he never does.  A hundred dollar bill was slipped into my hand that same day as a thank you for serving.  

Today, as I've managed the calls and messages between nurses and the dr about the new bleeding....I'm just tired.  I DO NOT want her to go through this again.  Period.  Yet, here we are. Taking pictures of poo and wondering. 

We got home without hitting any serious weather praise the Lord.  There was a letter on the counter in the mail and a financial gift had been given to us to help cover gas costs.  Friends came over last Friday and scrubbed my main floors and various other cleaning duties that get neglected in the day to day of our hectic season.  Another friend is bringing us dinner tonight.  I might cry on her as I share our day.  I had to spend the day in the courthouse yesterday having been sequestered to jury duty.  I did get called but they excused me as soon as they questioned me regarding my inability to serve on the trial that would take place today.

Blessings are everywhere and I'm grateful. Thank you for continued prayers.

PRAISE.THE.LORD

 Today, I discovered that our new insurance will pay for Lillian's medicine that we were paying 129.00 a month for will cover it and we will only pay 60.00.  WHOOP WHOOP!  I am just beside myself.  Not something I'm proud of myself to say, but we were having to put that on credit every month and while we eventually could get partial reimbursement it has taken months and me jumping through multiple hoops to do so.  Man, that just felt like such favor today.  

I'm not sure if I mentioned it or not, but Lillian has her appointment with the HEM/ONC department June 22nd.  I hope and pray we have a pretty straight forward answer to the blood results. Her last cycle was better but still heavy.  She had a great deal of pain this time and was nearly doubled over.  We were out getting groceries and I thought I would have to abandon ship and get her home as I wasn't exactly sure what was happening, but I had an essential oil with me and rubbed it on and within 20 minutes she was much better.

This particular season is wearing for me.  A little insight, if I can properly put it into words....if I haven't already....I thought we had her problems figured out...I thought we KNEW what her chronic illnesses were and THOSE are what we would be dealing with in her life.  It's more that a lot to swallow when a whole new chronic illness is introduced and then throw some unknown in the mix....and I'm back to the beginning of her life.  So many unknowns.  Course, I don't know who expects their child to have chronic illnesses...no one I imagine.  I cannot, will not, allow my mind to wander to the unknown.  I continue to trust my Lord and His goodness and His strength.  I would be lying, though, if  I didn't say this is hard.  It's overwhelming.  I will try to continue serve others and hopefully bring glory to God as I tread these waters that HE walks on steadily.