It is overwhelming.

 But don't just listen to God's word. You must do what it says. Otherwise, you are only fooling yourselves. For if you listen to the word and don't obey, it is like glancing at your face in the mirror. You see yourself, walk away, and forget what you look like. But if you look carefully into the perfect law that sets you free, and if you do what it says and don't forget what you heard, then God will bless you for doing it. " James 1:22-25

This is part of the scriptures I studied Thursday morning. I felt led, right away to share it on facebook , so I did.

Later that day I tried to reorder one of Lillian's meds only to find it was denied being filled. After several calls, I found out that our insurance will no longer allow us to utilize retail pharmacies. We MUST use their mail order pharmacy. They also, after several calls, informed us that they would not bill her secondary insurance. I lost it. Another thing was going to be added to my list. By evening I made my peace, knowing that I could go through the whole reimbursement process, I didn't have a choice. The next day after long phone calls, I found out  medicaid won't allow us to submit for reimbursement. After I exhausted all resources and shed a few tears. Peace kind of washed in. We would put it on a credit card and have to deal with it. That's going to be roughly and additional 200.00 out of our pocket. I try really, really hard to not complain about money. The reality is that we have struggled in this season. Unforeseen circumstances, such as medical bills and more medical bills...this is the first week in years I hadn't enough money to pay for groceries. As I made my bed, wondering how this was going to work...I decided to put an application in a local grocery store. I went onto the website twice to apply and the link was broken each time. I gave up. This is just how it's going to be. We can and will scrape by. We will. As I made my bed Friday, I said in my brain, how amazing would it be if  1000.00 dollars came in the mail. Then I giggled. Reality check crazy lady.

Saturday morning came and went and as we sat down to lunch a knock came to the door. A group from the 1010 project stopped by to see if we needed any work done. (a local church organizes groups of 10 and each person brings 10.00 and they go around town in prayer going where God leads them. ) She handed me some money, and in my mind I thought, this is awesome I can get more groceries. They prayed with us and left and as I made it in to the other side of my house, I flipped the money over to find a 100.00 bill, one after the other....adding up to 1200.00. I was undone. Overwhelmed. Noone knew this information except us and God.

I could tell a million stories like this one. Oh how HE loves us. Oh how HE loves you. Reread that scripture....just completely ovewhelming.

I shared this testimony at church on Sunday, hoping the message was clear that this wasn't about money, but a God who is in every detail. By the end of service we were donated an additional 1000.00 dollars. Then a sweet lady, who I don't know, came over and gave me what I presume was her only 7.00 in her purse and told me it wasn't much, but it would buy an ice cream.

This is a hard, hard season, but it just pushes me closer and closer to the One who knows it all. Draw near to him. He will draw near to you. Be blessed today.

Updates

 We saw the pediatric gynecologist today.  She also had an ultrasound prior to the visit, in which I went to the complete opposite end of the complex and office and had to drive to the other side and then we were late....I digress, she was pleased with the ultrasound and said  her organs looked really good.  (We don't hear that too often) She would like to divert to the orthopedic and endocrinologist in regard to how they feel about continuing depo shots.  At this point, she will get another depo shot at the end of the month and we will see the new docs in the coming weeks.  There were a lot of I don't know the answer to those questions because Lillian is not a "typical child"  in size or in all her specific medical issues.  Bottom line, no IUD for the time.  

I'll interrupt here to tell you that this is possibly the first time in almost 16 years that I forgot to grab her feeding supplies and didn't remember that I forgot until we parked in KY. There's some MOTY status, right there folks.  I like to stay on top, you know.  Back to our regularly scheduled update....

We got to her blood draw appointment and the tech asked me if they gave me a kit.  I'm like, a kit?  No, no kit.  My brain said here we go.  Apparently, the Dr Gut put in a order for stool samples and I needed a kit to collect and bring them back within 24 hours.  After some conversation, we decided to try to get one while we were there and she was like "oh no I don't collect it"....poor new girl...LOL They stuck her 3 times before they got the draw and then she was able to give me a large thick liquid stool which was so delightful to dispense into tiny containers with a tongue depressor.

  Don't hate me for my glamorous life, y'all.  

All in all, a good appointment today.  I felt relieved.  I dreaded this visit, and it turned out mostly positive.  I *hope* this blood work gives us some definitive answers.  Her next infusion is the 28th and we see the hematologist as well.  Thank you so much for your prayers and support.  They are needed and they are felt.  

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.

Overwhelmed and Blessed?

 Can the two coexist?  I say yes.  I sat here this morning thinking on all the things.  Well, first off this is a bill pay/budget day for me.  That can be overwhelming in and of itself at times.  My mind started running,  school about to start...the layers of "stuff" that will add to my load.....no longer having respite care because my daughter moved on to a full time job.....the layers that will add to my days...can I face the challenge of hiring a person I don't know to help.....a new job for my husband which is great but no overtime....can I serve in making a dish for a church dinner......what will I have prepped for our dinners the next two weeks....how can I use what I already have.....the lists....needs of my children....the looming infusions and hematology and pulmonology appts ahead and what will I do with my son, and who can pick him up from school that day......am I making the right choice for her care....I am aware that these are ALL things that face every other person in the world.  I don't feel sorry for myself, but I am overwhelmed.  Although,  everyone faces these challenges, not everyone is faced with a medically fragile child to care for as well.  The tears start to flow and I pray.  God help me.  I need wisdom, I need guidance.  Help me release the panic I feel. The blessings flow in to remind me, I am not hidden.  Random acts of kindness have flowed over us in the past week and a half.  Some of them specific to me others for our family.  They come in the form of an Aunt  who takes my son shopping for school shoes and buys him school clothes, a daughter who purchases school supplies out of love, a mom who takes us three out to lunch and sacrifices time to sit through appointments, friends who show up with ground beef and a gift card, a sweet friend who hands me a gift bag of goodies, friends who listen and take me to dinner, financial helps from a coworker and friends and our church.  All of it helps and reminds me He sees me.  He sees us.  

I'm struggling with the unknown and to be honest what will be known. I continue to trust the Lord and that He does.  I am sad that my child continues to face struggles.  Sometimes, the thought creeps in, how much can this little girl take before her body can take no more.  I do not linger on these thoughts, but I'm just being honest here, they do come.  But at the end of the day, the Lord is there.  He knows and he fights for me.  I need only to be still.

Are you struggling today?  My advice, "the Lord will fight for you, you need only to be still" Exodus 14:14

Dr.Gynecologist Visit

 Today we saw a new dr.  A new -ologist in our lives. First off, to those traveling via I65, do not drive to the other end of town to get on 65 as the on ramp is closed.  Let's just say I've now been to the actual towns of Dudleytown and Union town.  Took me 45 minutes to get to the Uniontown exit and travels through the countryside I have never seen, thank heavens I left extra early...thank you Holy Spirit for that prompting....back to your regulary scheduled update....

I did make a brief post on facebook last night about our "heavy" day.  It felt weighty to me.  We got to our appointment exactly on time.  They did her vitals and ushered us into a room where we sat for over an hour after her appointment time.  After I stuck my head out the door and asked if we were forgotten, the doctor arrived about five minutes later.  Of course, steam was slowly escaping my ears because I KNOW they would never hold her appointment time for an HOUR if we were that late, (that drive was stressful) I digress,  I relaxed and delved into the medical history of my child.  Why I think it will be an easy fix.  I, in fact, sat there wondering why we were even here.  I mean we got the shot going,  that will help her cycles, why are we here?  And then, the ball drops. The doctor starts informing us. 

The cycles are so heavy due to the Crohn's inflammation.  Her preferred treatment for Lillian specifically would not be the shot due to the fact that long term use of the shot causes osteoporosis.  Due to the fact that Lillian is so small and has little muscle mass, it's an extra risk.  She would prefer to place a medicated IUD under general anesthesia.  My next response is, if we go to surgery why not a hysterectomy or ablation?  I was not expecting her response at. all.  Those surgeries are major abdominal surgeries ( i know this) however, what I did not foresee was how extra dangerous it is for someone with Crohn's disease.  She said there is so much inflammation it would be very unsafe to perform a hysterectomy.  An ablation, which is where they cauterize (or burn) the inner lining of the uterus would only be effective for a few years and would cause a lot of scar tissue and would result in needing a hysterectomy in a few years anyway.

When we started discussing surgery, Lillian became very scared and started crying and was hanging on me for dear life.  I couldn't even talk about it to anyone later because the words surgery threw her into complete anxiety and tears. 

She is going to be scheduled for a bone density scan.  She's also already scheduled for an abdominal pelvic ultrasound in early September to prep for IUD,  

I don't feel settled about any of it.  I'm gutted, she has no choices and I have to decide which is the least worst option...not the best...no the least worst.  I'm sad.  This is hard.   Help me Jesus....this is hard.

The drive home was also a mess.  Delays on the interstate, nearly running out of gas, (although I left home with more than enough) more back road explorations....such a long day. I'm grateful for safe travel and that I did, in fact, make it to a gas station in time and that my GPS was actually accurate this time.  

One foot in front of the other and Jesus beside us.  That's what I hold on to.  Peace be still.