Influenza A day 6

 This is a different experience for me.  She is way sicker than her last hospital stay.  I guess  benefits to the hospital are there are nurses keeping track of medicines and machines tracking vitals and oxygen.  Never thought I'd miss the monitors, but in these last several days, I do.  Nights continue to be very bad.  Breathing treatments, mucinex, and vest treatments being given every four hours and tylenol as often as needed, along with all her routine meds plus tamiflu.  I'm hoping her last night sweat out was her final break in fever, but time will tell. She can barely speak due to her throat pain and wretching. To add to her unpleasant days, she started her period.  She was due to have her shot today.  The office called yesterday to reschedule and it worked out that a church friend (a very knowledgeable retired nurse) came over and gave her the shot, which Lillian handled the best so far.   She is still fairly miserable, tearful, and mad at me A LOT.  I guess that might be considered an improvement.  She is also taking a few minutes in the bathroom to write on the mirrors as that is where I'm charting meds and treatments.   Keep us in your prayers.  We appreciate them all so much. 

So, in seeking to be positive, We have been SO very blessed by our church family. Matt made it to work safely.  Ezekiel is doing better today. Lillian is not any worse. (i think) the power is on and there is sufficient food in the house. We are warm and safe in refuge of His wings.  None of this is a surprise to Him.  He is faithful.

 Merry Christmas.  

Influenza Day 4

 Nights are rough, days are rough. Asthma is in full swing, which for her means coughing until she can't breathe. Fevers are still raging.  I  gagged and dry heaved this morning simply because her harsh gagging started me gagging, ;which led to other unpleasantness that I'll spare you the details of.   I am throwing EVERYTHING at her.  Oils, meds, more oils, more meds, prayer, prayer, more prayer, pleading prayers, crying prayers.   She's begged me to take her to the hospital.   Crushing.  Guess what, being home is just as exhausting as being in the hospital, my couch is just as hard in places as the pleather beds...HA! I am grateful to be home, though.  My shower is far overdue, but I can't leave her long enough to do so, because of all the constant snot and wretching. ( I sleep some when Matt gets home) I'm keeping notes of med times on the bathroom mirror because in my fatigue, I can no longer keep track of times.  Food in the house is sparse and I mean sparse because I haven't been to the grocery store.  We do have bread and milk and peanut butter and some very gracious church family are bringing us meals this week at supper time.  I've set an alarm on Alexa so I can give each of her meds spread out so that I can then give her her first feed. At least 3 friends called yesterday and prayed with me. 

 Thank you for your continued prayers and support.  There's my timer, time to medicate.

Influenza A

 In the early morning hours of Sunday, Lillian spiked a high fever. She woke me in the bathroom gagging.  Gagging and vomiting have always been a tell of a fever for her.  Sunday, she was miserable.  Unable to swallow, wretching, and nonstop fever. This has continued all through the day and night and into today.  After contact with our pediatrician, I got her in to see him this morning.  She tested positive for Influenza A , negative for Covid and possibly strep throat.  The rapid test for strep was negative, but her throat looked very bad.  She is in the window for tamiflu, so the race was on to find somewhere who had it.  I will save you the details of how long it took to get it and the difficulty it involved, but we remained in Columbus for some time before we got the meds.  After I initially dropped off the scripts, I ran to a drive thru to grab lunch as it was approaching 1pm.  I pulled over into a parking lot and tears overtook me.  Fatigue + my miserable girl  = crying in a parking lot.  I parked the car and praying a turned up the radio.  I had turned on KLOVE even thought I'd been listening to an all Christmas station since Thanksgiving.  The song on was Gratitude by Brandon Lake.  One of my favorites.  Next, Raise a Halleluiah...another great one...song after song seemingly curated for me by my creator at that very moment.   My family and friends are moving mountains in prayer and dinner is being provided today and tomorrow.  

I started to speak the blessings . He is near, He knows it all and He is Worthy of it all.  Our Christmas might look a little different this year.  That's ok.  We will praise Him in the storm and be grateful.

Ortho and Hematology update

 Lillian had a busy day in KY today with doctors.  First, we saw the ortho guy.  They x-rayed her finger, he came in and (I could already see with my lay eyes, or so I thought) said, it's healed.  No more brace. WHOOP WHOOP!!  Praise the Lord!!!He said that joint would be stiff but just encourage her to use it normally.   We sat and waited for a restaurant to open and had lunch then headed downtown KY to see her hematologist, which was going to be at least another hour wait.  But, praise the Lord, she got the message we were already there and she saw us right away!!!  The best news, her elevated PTT isn't an issue due to the fact that her Factor XII blood test is off.  Factor 12 is a a genetic issue often inherited by the parents and there is no treatment or any concern there any longer. Now, her platelet function aggregation studies need to be repeated because it is not normal.  She says 80% of patients who have an abnormal study and the test is repeated, it comes back normal.  It was a great day full of good news and I am so grateful.  

She is delighted to be freed from her splint and so am I.  We will have another round of blood tests in the near future and see the hematologist again in March.  Thank you for your continued prayers.  

Sweet 16

 Happy Birthday sweet Lillian. Happy sweet 16. I'm not sure how 16 years have gone by.  They surely did not pass quickly, but they have passed.  This past year has been full of new challenges for Lillian's health.  A new chronic illness, multiple hospitalizations, another broken bone....highlights you don't intend to chronicle, but the highlights that are.  

I cannot say, "I can't believe it, or I can't believe she's 16"  (only for the same reasons that my other children have had the milestones of growing up as well)  Not every parent is afforded this gift.  For this child I prayed and the Lord has extended her life well beyond the years we were told by doctors.  I will rejoice and be glad.  I will not look to the past struggles, but to praise God for his mercies in all of them.  I will look forward to the years to come. I will continue to pray for her health and well being.  I will be grateful she is standing here, rubbing her head on mine, meowing like a cat.  HA!  (mind you, she's not a fan of real cats)  I will rejoice in the fact, that the Lord in his wonderful love, uses her life to draw me closer and closer to Him and the understanding of where true joy is.  Not in my circumstances, but in Him.  

She wants to go to Chili's for a late lunch with her sisters, so we will.  We will celebrate on Sunday with family and cake.  

I wanted to make a big celebration today with everyone that would want to be with us, but given health concerns, it will not happen.  She won't know the difference and she will LOVE every minute of the days to come.  

This is the day...

 repeat. this is the day..that the Lord hath made...that the Lord hath made that the Lord hath made, we will rejoice, we will rejoice, and be glad in it...

This was a day, for real.  So,  three days after Lillian came home for her last hospital stay, she fell down our second floor stairs, vaulted over the gate at the foot of the stairs, landing on her head, butt in the air.  After a very quick assessment, it was clear that she broke something in her hand/finger on her brachial plexus arm.  We took her to our local ER because KY is just too far to drive for a traumatic fall.  Thankfully, praise the Lord Jesus, she only had a broken finger.  Thing was, it was rotated way away from her other fingers and twisted.  The ER doctor informed me and two of my adult daughters that broken fingers are no big deal, they don't do anything for them and we could see an ortho or follow up with our pediatrician.   So, me being me, and not a big fan of the ortho group here, for her (we have been there and done that with her broken leg) I called our pediatrician. I was told by staff he would review the films and get back to me.  That was Monday, the day after the fall.  The ER gave no after care instructions other than pain relief medication.  I was told by our pediatrician staff we could remove the splint in a week.  I, on Monday, think everything is in hand, no pun intended.  By Wednesday evening, 9pm, Matt notices a prolific rash all over her torso and back.  I make a few phone calls to trusted friends and family and take their advice and get on the phone with the pediatrician Thursday morning.  Remember,  Lillian has multiple medical conditions and is on a biologic infusion which is an immunosuppressant.  She already has an immune disorder and all the other host of issues she has.  Life has been a little crazy these last two months.  Back to the phone, I am on hold at 8am being the 14th caller in line.  I remain on hold and eventually I'm caller 8 and I've been offered, by their call system, that if I wish I can leave a message and my call will be returned.  So, I did.  They called my back at 9 and I give them all the pertinent information, and they tell me they have no appointments, and I should have stayed on the line waiting.  Who knew?  They ask me to send a pic in the patient portal.  So, I did.  I, then reach out to her GI team to see if this is related to the treatment she had the prior two weeks ago.  By 5pm,  GI has said no connection too far apart.  I get a return email in the portal needing an explanation of the picture, which I did not know had not been relayed.  I was simply asked to send a picture.  I have a late night conversation with our pediatrician and the consensus is that it is viral.  Mind you, the rash is spreading daily and ugly.  I send more questions in the portal friday regarding the rash and the broken finger, with no response, which ok, I get it it's a friday and these things take time, I know ALL this.  I decide she must have a bath and ask my oldest daughter to come over to re wrap.  Well, I'm no doctor, but looking at that finger I jsut can't figure out how a splint is going to make that thing straight again.  I call the ortho doc in town and I try to take her to walk in clinic and as we are in the car, the school calls me to pick up Ezekiel because he is not feeling well.  Ortho visit thwarted. After getting no response on Monday morning, I drop my son off at school and head straight to the ortho walk in clinic.  They take her straight back and the clinician seeing her is almost berating me for waiting a week to bring  her in, wait for it....because this finger is going to REQUIRE SURGERY. Him" I saw this report last week and didn't understand why you didn't bring her in" Well, let me tell you, I felt absolutely sick to my stomach. SICK.  They scheduled her the next day to see their hand specialist. We returned home and I sent another message in the portal, shared my heart with those same trusted friends and family, left a phone message with the ED director, and off we went to head out to her chiropractor appointment.  As I was driving, I started to cry and didn't know if I'd be able to stop.  I started reciting in my head, help me Lord over and over because words would not come for how I was feeling, and rejoice and be glad was floating around in there too.  After about 5 miles, I started to say, you are sovereign, Lord.  You already knew all this and I will trust you.  

Enter yesterday, (I leave messages for our pediatrician practice manager and the ED director, again) I call her pulmonologist to tell them she's going to need steroids for surgery, because she needs them 3days prior to surgery.  I spoke with his nurse and was reminded that her pulmonologist won't approve surgery for her in a non-pediatric setting due to her health issues.  Well, my walls came crashing down, tears fell.  I hung up with her not knowing what in the world to do and feeling more of the failure that comes along with being failed by people who we depend on to help us make decisions for her.  I get online and start calling the pediatric orthos in KY.  I get directed to the right practice and am told an urgent message is being sent to the clinical team and someone will call me back.  

I then get a call back from the pediatrician's office and I share my concerns with her.  Longer story shorter, we wind up in the pediatrician's office at 1145 to be seen for the rash that continues to consume her tiny body.  They mono tested her but that was negative.  Nothing gels with it being viral or an allergic reaction.  (two doctors are now evaluating).  We leave to get some lunch and just about 10 minutes after our food arrives, at 118pm, the practice from KY calls to get her in at 220.  We beelined it to KY where after xrays and discussion with the dr there, he feels surgery is best to avoid given her extensive medical history.  They numb her up (which was absolutely horrible) which was probably a matter of minutes but what seemed to last eternally.  He came back and spent some time manipulating (reducing the fracture and rotating the bone back) and voila, it was straight again.  They sent us downstairs and made a custom arm and finger brace for her.  We go back in three weeks.  We left home yesterday at 1045, we returned home at 7pm, I think.  Barely having had lunch or eaten any dinner.  

The bottom line is, Lillian gets great care from her pediatrician.  She got great care in our local ER.  She got awesome care at the Louisville Hand and Arm specialist.  The problem, sometimes, lies in communication.  Let me tell you, I've done a lot of communication the last several days with the powers that be.  

When we arrived home last night, I had a message from PA who saw her in the office at our local ortho, concerned about me cancelling her appointment.  Even though, I explained the entire situation to the staff, HE wasn't given the information.  

Everything moved quickly yesterday.  I was not expecting to do any of that.  My hair was greasy, missed our hair cut appointments, but broken finger fixed, check, rash- still a mystery. I am thankful that we had safe travels,  I am grateful for prodding of the Holy Spirit.  I am thankful for my friends and family that are available to listen to my tears and to help advise me.  I am thankful for doctors who listen.  I'm hosting thanksgiving tomorrow and my house needs works.  Kids have eye appointments today that I scheduled weeks ago.  Life does not stop.  I could be bitter or I could be better.  I will rejoice.  ( I might cry some too)

When life gives you lemons....

 sometimes you just get something sour.  You may or may not know Lillian spent 7 days in the hospital in late September.  She came home and developed Cdiff in her bowels which took another whole level of treatment.   She then had a few appointments with her GI doctor and Pulmonary doctor.  Those seemed to go fine.  GI has decided to continue treatment for another 6 months and then he will see her and plan another scope.  

So, Saturday morning, she woke up and started having the very same symptoms she displayed on her last admission.  We treated her at home for 24 hours and contacted the GI team.  I took her to the ER and she was taken back almost immediately.  In general, testing indicated infection and she was admitted.  We were discharged Wednesday.  Right this moment, we're not sure if she had a viral infection, a blood infection, or this was a Crohn's flare up.  They kept saying that the remicade is great for Crohn's, but really bad for the immune system.  (and she already has a physical immune disorder).  

This is not the picture I had in mind when we got on this Crohn's journey last year.  Last admission was definitely worse than this one.  She was sicker for several more days before she was improving.  I just kept thinking and saying, I can't believe we're here again.  She was extremely dehydrated after 24 hours, her potassium levels were very low and her inflammation markers were very high.  

The chaplain visited us on Monday morning, and it was wonderful to have someone, in the flesh,  to pray for us in our time of need.  She quietly listened to me and that was the only time I cried while we were there.  Immediately my spirit was quieted, and I came to the realization that, if this is how it is, then this is how it is.  I am only human, but what a joy to know the God of all.  My thoughts are rarely "why me" or "why her".  As I've studied the bible more and more it's clear to me that God is the God of all things, and He loves everyone of us, and rain falls on the just and the unjust.  

I have determined to make my mantra, this is the day that the Lord has made, I will rejoice and be glad in it.  You know why?  Because not one of us is promised tomorrow.  So, I will rejoice and be glad.  It's hard and it's mentally and physically exhausting walking this road, but I WILL rejoice in it.  As I sat in the hospital, each time a negative thought would attempt to come into my mind, I would silence it and declare a blessing or declare something I was grateful for in the situation.  The night they hung the antibiotic she reacted to, it was 10pm.  It was going to run 3 hours and I was so, so tired and I started asking the Lord, how am I going to stay awake for this long.  I laid there thinking and praying and all I could come up with was perfect love casts out fear.  I can trust the Lord to keep her safe.  I dosed off after an hour and woke when the med finished so I could silence the pump. (she hates the beeps of the pumps and monitors....high anxiety) We do have a choice where we let our minds go.  

We came home and I was so thankful but coming home brought its challenges which led me to crying in my lunch of popcorn and I really didn't even know why.  A friend purchased dinner for us from Cracker Barrell and I told her I was just crying and didn't know why, and she said "He's worthy of it all" so go ahead and cry.  I was reminded of scripture in Psalms of how the Lord can and wants to hear the raw and painful things and we can give him those along with our gratitude.  She hugged me with those words.  

This morning, in my time with the Lord, this verse spoke to me, yet again, " When the storms of life come, the wicked are whirled away, but the godly have a lasting foundation" Proverbs 10:25

Then I traveled over to Psalm 94 where these verses jumped out to me, "unless the Lord had helped me, I would soon have settled in the silence of the grave.  I cried out, " I am slipping!" but your unfailing love, O Lord, supported me.  When doubts filled my mind, your comfort gave me renewed hope and cheer. (17-19) (22) But the Lord is my fortress; my God is the mighty rock where I hide.

These are just a few of the ones I wanted to share.  I hope what I'm getting across is, I can do NONE of this life in my own strength.  There seems to be struggle after struggle after struggle. There is also blessing after blessing after blessing.  I will rejoice and be glad.  

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.

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.

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.  

Have no doubt

 I had claimed every reason to stay home from church today.  The thought of facing friends and acquaintances was just more than I could bear. Aside from my sadness, I had the family coming over and I'd be making homemade pizza for everyone.  I knew I could worship Jesus right here in this house.  Then, I thought, well...I could just arrive later when church was already started and avoid the hi and how are yous and leave before everyone else.  Yep, that seemed like a good plan.  Something I could manage.  A recent conversation with my brother from another mother, he had told me you are not alone Michelle, we are here to support you guys.  All I could think this morning, was true, not true.  I am alone.  I feel alone.  I know the Lord is faithful and near, but man it feels lonely.

  I got up and started prepping food and kind of taking my time and needing to shower but just didn't think I had the time...but I did it anyway thinking oh we'll be arriving late anyway. Well, I ate breakfast, fried a pound of sausage, got dough ready, made brownies, took a shower, and got ready.  Matt was handling all of Lillian's needs.  My hair was still damp, but it was only 930 am.  I got up at 8:07.  Church started at 10.  I sucked in my breathe and we loaded up and arrived early.    I was talking shop about some recipes with a friend and she started to tell me what a testimony I was.  She reads my blog and was just encouraging me over and over.   I headed to a friend to drop her a card and another friend stopped me to plan an evening to bring us dinner which helped my heart.  

Hear me friends..... HE KNOWS IT ALL.  We were two praise songs in and my spirit connected.  Third song starts,  'all my life you have been faithful, all my life you have been so so good, with every breath that I am able, I will sing of the goodness of God'  I made my way to the front to sing at the altar.   In seconds, two were gathered around me.  Then, there were hands around me, prayers from every direction and I shuddered as tears gripped my entirety.  Scripture was spoken.  Tears were shed by my sisters for me and with me.  I was held, not just by my sisters, but the hands and feet of Jesus.   Sisters came and sisters went.  I have no idea who they all were, but I laid down my burden for my daughter.  Another sister came to me and began to speak prophetically about my loneliness...and that I was NOT alone.  How could she know that???  I have rarely ever spoken that aloud.  That's how you know it's Jesus, friends.  That's how I know HE is near because He uses others to confirm what I already know and believe. So you see, I tried to hide.  No matter what I tried, He had other plans. My heart is still tender, but in my weakness He is strong.  My burden is lifted and peace has been restored. 

Life is hard.  Our life is maybe harder than others.  More of Him and less of me.  Have no doubts, HE is there.  

Dr GI checks in

 Well.... my ardent hope was that her GI doc would consider her inflated blood results as a result of the remicade infusions.  Alas, they are not.  It is a separate issue. He asked me to go right down to the infusion center and get her an appt. We are scheduled to see hematologist/oncologist in June.  She will likely have 2 cycles by then so please pray for change, an earlier appointment or just a decrease.  He was not super satisfied with her bowel movements and a few other symptoms.  After her next infusion in June, if there isn't a change, he will increase her dose.  She also developed a rash at her last infusion and we are to keep an eye out for that next time. 

I am really at a loss for words.  I am not worrying...however, I'm sad.I pray, that this is nothing, because I don't know what it all means...it just feels heavy.  Tears come easily.  If you start not seeing my around, it's because I'm sheltering my heart and my mind because it is just overwhelming to me right now.  Just being honest.  I don't want to pretend to be fine when I'm not.  

I had settled in to feeling like I knew the medical things we were up against and how to manage it all.  That came crashing down in November.  It almost feels a little like the beginning when we were hearing something new every month that needed attending.  

If you didn't know, Lillian has heart, lung, kidney, now bowel, chronic diseases.  She is mentally and developmentally delayed.  She is dependent on us to be fed via gtube.  She falls frequently, she has sensory issues and she is dependent on us for bathing, toileting, a personal hygiene.  One of us sits with her each night until she falls asleep because sleep just has to overtake her, she doesn't just fall asleep as a normal child would. We have been told that her brain has deterioration problems.  We've been told there is a mass on her liver.  Now it appears she also has some type of blood disorder.  She has had surgeries to the point I cannot tell you the number. 

I am grateful  that this blood information was uncovered so something calamitous did not occur.   My mama heart is aching, though.  Keep us in your prayers.  

Remicade #4

 Lillian had her fourth infusion with no complications.  She did develop a rash, which the dr. gut said was not a result of her infusion.  It lasted about a week, so we shall see what happens in June.

Her hgb level did drop quite a bit over the last two months, and her cycles resumed in March, which I *thought* was a positive sign that her body was getting back to normal.  (do you feel the but coming?) Without going into great detail, my angst over cycle suppression was quickly reversed. Her body cannot withstand the level of blood loss she is experiencing and her labs confirm that.  After we get her blood clot/bleeding test results back we will most likely begin another new medication to stop this from happening.   These last six months have really been a challenge for me in making decisions about her care.  It is stressful to constantly be examining her bowel movements and her behaviors.  Now adding medications that I never wanted to do.  There's a constant weighing of the risk vs benefits.  

She had another dental appointment, she goes quarterly.  She went back by herself again and did great.  I'm telling you, I can scarcely believe it, but what a huge blessing and big milestone for her.  I no longer feel the need for xanax after her appointments...just kidding, (not really.. never got any, but felt I needed it HA!)

She had a blood draw today that didn't go well, but they eventually got it and we were all relieved.  

She follows up with dr gut next week. It's been a busy month, with no end in sight.  I continue to count my blessings. Keep us in your prayers.  

Dr. Lungs

 We had Lillian's routine pulmonary appointment today.  Aside from a long, rainy, delayed drive down due to accidents and construction, our appointment went well.  She sounded good.  We got a new mask for her treatments as she has been struggling with some form of dermatitis on her face for at least a couple years.  He asked about her flu shot, which I have forgotten...again.  They were going to give her one, but they didn't have any.  He wants to see her again in four months...we still have been unable to get her gentamycin breathing med because it's on a nationwide back order.  Also, being on the remicade infusions decreases her immune system.  He told us to closely watch for "sick" symptoms. 

Something I didn't mention yesterday in her urology update is they were wanting to refer her to a pediatric gynecologist.  Please pray for discernment for us.I'm also just slightly overwhelmed at the thought of adding another -ist to our growing list. She needs some intervention in that area and I just struggle with the thought of more medication, especially the kind they will want to give her.  Please pray for speedy reimbursement of her stomach meds.  We are now into our 4th month without reimbursement...I am so grateful for it being reimbursed, but we have to charge it each month to get it and that adds up as well.  

She has her fourth treatment next week.  Pray for smooth sailing and no reactions.  We still have to have an xray on her hand due to her finger issues.  

Matt started a new job after 21+ years at his previous employer. Continue to keep him in prayer.  

Renal Ultrasound and Stuff...

 Lillian had a routine renal ultrasound today to follow up on her kidney problems.  Our appointment time was 2pm.  I had a daughter planning to pick up Ezekiel, but by the time I got to KY, that daughter had to tend to a medical issue that arose on her end so my stress level went up. Matt started a new job today so he wouldn't be home until later....I did get another daughter to pick him up...but it was just a bit stressful.  We had the ultrasound and had quite a bit of time yet before her appointment with the NP.   We checked out the gift shop and watched some fish get fed and moseyed on down to her dr office visit.  We were early, but not terribly.  I gave the girl her name and her next response was, does she have an appointment?  I said yes, at 3:40.  She replied, Oh no she doesn't we called and cancelled that appointment this morning and rescheduled her for tomorrow.  Her provider is sick today.  She continued to repeat to me that a message was left on my machine very early this morning.  I said, I've been home all morning until 1pm and no call, no message.  She confirmed numbers and then continued to tell me a message had been left, then confirmed my cell number, which no one called either.  We already have an appointment in KY Wednesday for her lung doctor and I told her I'm NOT coming tomorrow.  PS- I still have no voicemail or even call from their office on my caller ID.  So, of course the practitioner is booked for all her virtual calls and office visits for who knows how long.  So in the end, they'll just have to talk to her and call me back. 

We made our way back to the valet to get my van, and the tears about to spill and I'm like no, don't cry...not going to cry... when my cell phone rang and the manager of the of the practice called to tell me the NP had a migraine and couldn't come in today.  I said, I understand her being sick,( and of course I start to cry) I do not appreciate being told over and over again a message has been left on my voicemail when there has not been one of why no one would contact me via my cell phone.  It's a huge inconvenience to us.  (side note...I really try not to complain about money, I  struggle REALLY hard to be content in our situation,  but HELLO...gas is 4.00 a gallon....it's not a short trip to KY)  I told her I have no interest in being double or triple booked for an appointment because I've already been told she is booked, so she insists on us having a virtual call tomorrow with the NP.  Oh- and make sure Lillian is present for the call. Um, ok...because this certainly requires her to be seen I guess...as if her renal ultrasound isn't enough for her to see.  

So, virtual appointment...and Lillian must be present.  I'm tired.  That's all.

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.  

Thrush and general weariness

 Yesterday, Lillian had a 10:15 appt at the dentist to have a look and see if her thrush was gone after treatment.  It was much better, but not completely gone.  She indicated that we let the pediatrician know and see how he wanted to proceed.  We buzzed out of there and headed to her chiropractic appt that was at 1030.  Let me tell you how crazy I am...I  kept thinking, man, another phone call to a nurse who will have to talk to him and then he will have to decide what to do and then maybe I'll hear back in a couple days.....it wasn't until much later that it struck me that HELLO, we are seeing her pediatrician at 1:30 pm for her 15 year well child appointmenr. A crazy person.  Mercy.  Anyway, we saw her pediatrician and he had them paint her mouth with a purple medicine..her teeth and mouth are still purple...LOL.  It does make us giggle when we see it.  It will fade in another day.  We will revisit the thrush issue after she finishes her steroids.  Did you know steroids can cause that?  I didn't.  Actually, it's the fact that steroids compromise your immune system, which allows other bacteria to grow. *sighs*  

We will eventually get xrays of her contractured fingers, but in the summer as it is not emergent at this point.  My concern was she has gained 11 pounds since December first.  He told me to address it with the GI dr when we see him in february. He did say it could just be that the remicade is helping her to absorb more of her nutrition....but the gain didn't concern him because she's so tiny anyway...although it doesn't look like she's putting on any weight except in her gut.  Her gut, by the way, is so incredibly bloated.  Still.  Her ladies' days have stopped some time ago,  Like months and months, but he said due to the stress her body is under currently, he's not worried yet.   He also pointed out, again, that she has a rare chromosome that noone else in the world has and it's impossible to know what to expect with her.

It didn't really seem like a bad day.  BUT, as we got home, I felt drained.  Weary.  I felt agitated and couldn't even figure out why.  I kept praying and started to make dinner, but I really just wanted to lash out at someone for something.  You know what I mean?  I was talking to God.  Took a breath and focused on something else.  Later, my grandma called and I've felt bad for not visiting her recently and I wanted to visit this past weekend, as I talked to her about it the tears flowed.  I am weary, but I just have to keep going.  Can't stop.  Keep trusting the Lord and leaning in to him.  Look to eternity.

"weary traveler, restless soul  you were never meant to face this world alone. It'll all be worth it, so just hold on.  Weary traveler you won't be weary long" song by Jordan St Cyr

Ps 20:4-5 May He grant your heart's desires and make all your plans succeed. May we shout for joy when we hear of your victory and raise a victory banner in the name of our God.  May the Lord answer all your prayers.  

Infusion 2

 The last couple weeks have not been without lots of frustrations.  I have struggled to get meds that Lillian needs and am still trying to get coverage for her med that is 140.00.  Her breathing med is out of stock until possible end of January.  It seems every time I try to get something done, something else stands in the way.  I have had to make phone call after phone call to get her feeds.  I couldn't get another one of her breathing meds because insurance authorization. Many, many phone calls.  

Her second infusion was last Wednesday.  It went fine and just a little more streamlined.  We got out 30 minutes to an hour earlier than last time. My mom came with us this time and even though I was told she could come back with us, she was not allowed.  Lillian is terrified to be left alone and you know, sometimes, a mom just has to go potty. My mom, graciously waited, and was able to pick up lunch and she was fine with waiting, but I hated feeling like I wasted her day.  So, fleshy Michelle was irritable in our treatment room, ready to take my frustrations out on the nurse, as the front desk lady had treated me rudely as well.  Not to mention they are doing construction right next to the infusion center, so 4 hours of jack hammering, sawing and hammering also filled the room and contributed to my bad mood.  The internal voice was saying, hey, it's not her fault all this is going on and they have to hear it all day long.  So, I took a breath and let go of my grump.  The infusion went well.  I think she's only had one or two bowel movements today, which is a huge improvement so far.  

I've been in a dark place since November.  Really, truly struggling especially since her new diagnosis.  Tears have come easily just in talking about it.  I have felt that all too familiar feeling of failure to my other child at home.  I have just been overwhelmed with the decision of placing her on this infusion. I've cried out to God to just tell me the "right" thing.  I'm not sure I can even put a word to that season I'm coming out of.  I'm coming out of it because, I'm seeking him daily with intention.  I'm seeking out biblical teachers to give me tools.  I'm seeking the prayer of those who love us.  Guess what??  He's meeting every one of those needs.  I became weary of telling people I'm ok.  I wasn't....I'm not totally...but I will be.  My circumstances are not likely to change.  Not to say they won't...but I've been riding this wave for 15+ years, praise Jesus.   I just want to share the recent scripture that broke the spirit weighing on me.... "He will feed his flock like a shepherd.  He will carry the lambs in his arms, holding them close to his heart.  He will gently lead the mother sheep with their young.  " Isaiah 40:11 What a comforting, warming, overwhelming truth to hold on to.  That's where my lamb is, close to HIS heart and He IS leading me and them.  

Struggling or not, find time with Him.  He is a rock and a fortress...He will hide you in the shadow of His wings.   

Be blessed, this is the day that the Lord hath made, I WILL rejoice and be glad in it. 

Dentist Appointment

 Lillian had a great dental appointment.  She actually went back with the hygenist ALL by herself.  (we have tried this before, but they always have to come get me) She did great for her.  She has 4 minor cavities they are watching, as usual.  We had to celebrate with some mexican food and she was delighted that it was just the two of us.  

Infusion Day 1

 Lillian got her first remicade infusion today.  We were there for five hours and had no complications.  She did have a very low blood pressure prior to the infusion, but the next BP number was back to normal.  They do give prophylactic (I've used this word so many times and never knew the spelling, so I googled, now I know HA! Now I know forever 😂) tylenol and benadryl half an hour before the infusion.  They also missed her first IV stick, but the second stick was a success.  

We had a little bit of a traffic back up on our way down and though I felt confident in knowing where I was going, I did falter when we got there trying to remember the floors for the pedway to the center...but we made it.

Things to note...while there, it was pretty busy.  They are in there every 15 minutes or so when the infusion starts and the first hour.  It was just very busy.  Nothing I took to entertain her even made it out of the bag.  Books and a small game.  But, you know, an IV in one hand, a bandaid on the other hand, and a monitor on her toe...she was pretty much indisposed...tee hee.  She thinks so anyway.  The nurse enjoyed her so much, she told us she hoped she got Lillian next time.  

Food, I definitely need to pack food.  By the time I made it into a drive thru, it was 4pm.  I had a headache and I'm tired.  She doesn't seem to be feeling any side effects which is good.  I'm sure she's just very bored.   

I'm grateful for safe travel.  I'm grateful she had no reactions.  I'm grateful there is a treatment to get her feeling better.

I share my heart here in all it's real-ness.  I share my pain and my frustrations.  I pour myself out in this blog.  I hope to reach out to others.  I hope to share my faith...because in ALL of this..in all these things, I love Jesus.  I trust Jesus.  I cannot walk this journey without Him.  Do you know Him?  He's faithful, He provides, and His yoke is light.  Come to Him all who are weary and heavy laden...you will find rest for your soul. (Matthew 11)