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.