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)