Endocrinologist visit

 Today Lillian saw her new Endocrinologist.  I really liked him, very nice doctor.  He spoke to Lillian, which is always a bonus to me.  So, all good news to report.  Her DEXA scan is actually in normal range for her.  He did xrays to check for any spinal compression fractures and there were none.  He recommended another DEXA scan in a year to see how the depo may or may not be affecting her.  We don't need to get with him again unless she starts having weird, unexplained fractures.  He said she's high risk simply because she has chronic illnesses.  It is so refreshing and rare to have such a positive appointment.  Changed my whole day.  

Her pediatrician contacted me directly yesterday to apologize for the missed lab test.  I'm supposed to text him again if she doesn't seem to be responding to the med they put her on.  

In two weeks, we follow up with her GI and pulmonary doctors.  

I was struggling today.  I can't quite put my finger on why other than the general frustration I feel when she's failed by the professionals we are supposed to depend on and the fact that no matter what I cannot change it or even vent my frustration about it.  Maybe it will help with some other child, I hope, who won't fall through the cracks.  Sometimes, I feel there is a rage buried deep inside, with nowhere to go.  Noone wants their child to suffer needlessly and that creates a helplessness inside that is heart breaking.  And now, there are tears stinging my eyes and a lump in my throat.  

Today was a good day.  This is the day that the Lord has made.  I will rejoice and be glad in it.

One week home.

 We are home now for a week.  She is weak, but getting stronger.  She could be stronger if she wasn't plagued by cdiff.  I took her to the dr last wednesday, fearing she had prolapsed her rectum.  She is just sitting on the toilet bearing down for all she's worth for pure water to come out.  I suspected she had cdiff, which a bacterial illness that can get in the bowels once you are on antibiotics.  We turned in a stool sample and the dr said it was not her rectum, but the largest hemorroid he's ever seen on a child and it might require surgery.  She is on a steroid cream for that, and so far, I've seen little to no improvement.  We're also rinsing her with a peri bottle, which just do you know, you can't buy in a store anywhere around these parts.  So, we did some substitutions which were not altogether pleasant for me, but I'll spare you the details.  

I did not hear from the dr the rest of the week, so I assumed she was negative.  However, I have believed due to the symptoms she is having that she probably did.  Well, I called today.  She does have cdiff.  The have had the results since the 6th and noone has bothered to call or anything and our dr happens to be out of the office all week this week.  I have spent the bulk of this afternoon in contact with the office, with her GI dr and I've been notified, finally, that something should be called in before the pharmacy closes, but at this point, I just don't know.  

I am frustrated.  I am sad.  She is/has been miserable and there is nothing in my power but prayer to help her.  I keep telling myself, there is nothing new under the sun.  

I attended church Sunday for the first time in two weeks. It was good to be back.  

I feel emotionally/mentally exhausted.  

On a better note, after Matt had a discussion with his HR rep, they made accommodations for us to get Lillian's prescriptions at our local pharmacy.  When I went to get her med that costs us 60.00, I was shocked to be told we owed nothing.  Cain't HE do it???  (that's a little phrase my daughter picked up from her college roommate) God is good.  " My heart and my flesh may fail, but God is the strength of my heart and my portion forever."  Psalm 73:26 

Friends, know this: when you make a declaration, the evil one is going to strike with a vengeance.  Also know this: GOD WILL PREVAIL!  

The Lord will fight for you, you need only be still.  Exodus 14:14

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.