And then there was that bone density scan....

 Struggle bus.  I was on it.  I'm still on it...but I haven't cried since Friday, I think.  I imagine you can guess,  at this point, that the bone density scan was not what I hoped for.  She's being referred to an endocrinologist and orthopedic team that will eventually see her on a regular basis, I think.  I honestly have no idea what all of this means.  I do know it means I don't think she can stay on the depo which puts us back to an IUD.  We will see.  More appointments coming.  

I seriously had a total crash and burn when the doctor told me the results.  I struggled all week.  I couldn't even hardly talk about it for two days.  I still struggled to talk about it for the whole week.  

I'm heavy hearted and while I don't (or try very hard not to live in fear) I wonder how much more she can take.  It has been a long, hard 15 almost 16 years.  It is hard to watch her endure so much suffering.  It's not fair.  It is overwhelming.  It is discouraging.  

The GI dr is going to do some stool samples and another special test because she is still having gut trouble.  We are having special blood work in September to continue in discovery about her bleeding disorder.  We also have testing with the peds gyno on the same day.  

Please pray with me that we will make the right decisions for her.  This is so, so hard.  

In my weakness, He is strong.

6 Blocks later

 Today Lillian had her bone density scan, which was a very quick, noninvasive procedure.  It all went like clockwork AFTER we got where we were supposed to be. I'll be brief.  Basically, I was told multiple times that this test is done at the "hospital downtown". My assumption was that it was the children's hospital.  I should never assume.  After the very kind receptionist in the Radiology department walked us several blocks to a "pavilion" building, (not in a hospital)  we made it to our destination.  Test done and we hoofed it back to our original destination.  My mom treated us to Olive Garden (Lillian's choice).  We had a little retail therapy (thanks to a gift card I was gifted)  and headed back.  I've prayed and prayed this test is normal.  I am CLAIMING a positive result.  

This morning was hard.  Lillian has really struggled with her gut since her last, cycle, flu, treatment. Her stomach is very bloated and I'm not getting much air.  Her site is leaking and breaking down her skin.  I had to put gauze in there at lunch today.  She cried when I touched it to do her first feeding today.  We finished and I cried.  Well, the tears were there, but I had to hold them back.  I said some prayer and tucked all my crazy back in.  I can't cry openly, it bothers her so badly. My heart is fragile because I hurt for my child.   The words of a friend from church floated through my mind, "He's already there, Michelle".  

I got several texts on my way home, sweet friend left some main dishes in a cooler at my door, Another friend sent a text because she sensed spiritually that I needed it.  A family member checked in just to see how I was.   Sunday another dear friend, gave me a plaque that is just so kind and touching.  My sweet sister-in-law brought me a vase of flowers from her garden and blessed Ezekiel with more shoes and back to school items.  I am loved.  He sees me and sends his love through others.  I am blessed.  

Infusion #6 and Hem/Onc followup

 Lillian's infusion went like clockwork.  They had us in a tiny cubicle but later moved us to a closed room which was super nice.  They got her IV on the first stick, (I've been praying ahead) and were able to pull all the blood they needed which was A LOT as the Hematologist had added on numerous more tests. I think they took 14 vials this time.  They are getting to know Lillian and everyone LOVES her.  

We saw the hematologist after her infusion appointment.  The first set of tests didn't answer any  questions.  She still has a very, very elevated PTT.  (this is a bleeding time test) This indicates to them that there is something definitely wrong going on in her body that isn't related to any of her other issues.  One of the tests they did today was extremely elevated as well, so they are ordering another test that needs to be done at another hospital location, which we are scheduled to be at early September.  It is just a blood test, but I do have to schedule it.  If her current blood tests they are still waiting on don't provide answers, there is a genetic test they want to run which is complicated with insurance. We shall see.  

I discussed with her our visit with Peds Gyn.  I told her I have decided against the IUD unless her bone density scan (DXA) is bad.  Lillian does not want to go to surgery and she has so little choice in all that she faces.  If the shot gives us the desire we need in suppressing her cycles, then I'm ok with that.   And I cried a little...and I don't know why....except that, it's just a lot of stress. We did escape July with no cycle, but she did start today on our way home...a little disappointed, but knew it would not work immediately. Also explains why she had a total melt down yesterday over me brushing her teeth.  I told Matt yesterday, she is so emotionally all over the place...it's mentally exhausting.  I told him it's a good thing I don't drink or he'd come home to a drunken wife.  Funny, not funny.

  We did learn today that if she requires any surgery in the future, she will need extra IV meds to protect her from bleeding out.  

Somehow, (can't imagine why) I managed to get behind on our toll bill.  Yesterday, I was paying the deficit and putting more money into the account so we still get the lower rate and I thought...add this to the list of things I never knew I'd need to do.

Lillian got a haircut Friday and I'd say she cut at least 4 inches off.   She let our hairdresser wash her hair in the sink, which a huge thing.  She was highly anxious, but she got through it.   I'm pretty sure I know who the generous soul was, but when we were finished, I was told our bill was taken care of.  Once again, blessed, once again a wink from God that he sees us and uses so many to bless us.  Every kindness, the cards in the mail, the texts, an army of 10, ...I walked out on my porch yesterday to find a corn shucker left for me.  Prayers upon prayers that I know are spoken.  Do you know Him?  Can I tell you about Him?  HE IS FAITHFUL.  I can trust Him.  My heart is heavy sometimes and I sometimes long for a bit of solitude, but know, these feet don't hit the floor without HIS strength.