Pediatrician Checks In

 Lillian had her 14 year well child appointment last week.  She had gained six pounds in a year and is just an inch shy of five feet tall.  She had a good visit, but I did ask for a blood draw because she has complained about being tired for quite some time.  I cried a little as we discussed the changes she's going through and some of the possible scenarios we should consider. She did pretty well with the blood draw, but it's heart wrenching to actually hear her say through tears, "I'm  'care".  

Did get the call today, she does have a very low vitamin D level so we'll start a supplement for that.  Her hemaglobin was good, and she had no corona antibodies.  Her metabolic panel was also fine.  

As she sat there on the table, legs crossed, hands in her lap, waiting I was struck by how grown up she is.  I nearly started to cry again.  When she was a year old and we had professional pictures made, I cried while previewing the photos because, first I was happy she had made it to a year old.  Second my heart was gripped that these might be the only photographic memories I would have of her life.  This day, at 14, I'm just grateful and in awe.  So, I said, can I take your picture and she said, "yea".  There is so much captured in that one moment.  

  So, if you're reading to this point,  this might resonate with you...we weren't given what we prayed for...ie a healthy child.  As we prayed in those early days and the years since we haven't been granted the desires of our hearts for her development and health issues.  We HAVE  been given life, we've seen miracles, we've seen prayers answered in other ways.  I've grown in the fruits of the spirit and closer and closer to my Strength and Shield.  Your story, your faith WILL touch others in ways you won't even know.  You are strong and this is not over until HE says it is.  

Heart Dr Checks In

 WHAT A DAY!  I felt confident that we would have a great cardiology appt for Lillian and I was right.  Her heart looks great and he doesn't foresee her ever needing heart repair to her original repair.  Since she doesn't grow in super huge leaps, it's actually been a good thing in regards to her heart defect.  Now, I move on to story time....I left town about half an hour earlier than needed and had been on 65 for about 25 minutes when we came to a dead stop.  There was a crash ahead and there was no telling how long we'd be sitting.  After 25-30 cars ahead and behind me made illegal uturns, I called the dr to tell them what was going on.They stated I could be 15 minutes late with no problem. I, then, tried to make an illegal uturn myself, only to be caught by a state policeman.  Now, mind you, I thought, these other people were not making the best decision, but I was also starting to feel desperate.  So, I turned myself around and was just settling in for the wait when the police officer, who was young enough to be my son, tapped on my window. He proceeded to chew me out, very kindly, about my "almost fatal" decision to make a uturn.  I told him I agreed completely and then he continued to lecture me about almost killing ourselves.  He said he wasn't going to give me a ticket and I told him I he should because I deserved it.  He finally proceeded on his way and I felt like a total idiot.  We arrive at the dr office and I am busting tale to get in there, my time read exactly 15 minutes over our appointment time.  We walk into the office and the front desk/medical assistant was ruder to me than I've ever encountered in my life.  I was biting back the tears.  She continued to talk to me very rudely to the point, where my old fleshy side nearly chucked that clipboard right back at her.  I told her I called and she was so so rude...I sat there on the seat thinking be kind to your enemy, don't return evil for evil.  She took Lillian back and was a different person toward her and I finally made it to the bathroom and cried.   

The doctor did say he was sorry for my trip issues and I said, well I got chewed out by a cop and your receptionist was not kind to me at all.  He said he was sorry for that too.  It was a rough day for me, stressful, I should say.  I just hope there was no injury to the people involved in the wreck.   

Also, we had a good report with her pulmonologist in December.

Never a dull moment.  

Dental visit recap

Thursday, Lillian had her quarterly dental appointment.  It went terribly.  She was screaming, crying, fighting me, tell me "no tah" which means no talk.  After what seemed like FOREVER..much longer than it should have been, her hygienest looked at me and said, "this is the hardest time I've ever had cleaning her teeth." She said, "you know when you told me you had to fight her to brush her teeth?" I said, yes.  She said " I now understand what you meant".  I think, perhaps, she thought I was exaggerating.  I was not.After it was over, I said I needed medication and she said well, you don't have to fight her and I was said oh yes I do. I feel very shaken, physically...internally.  It's hard to put into words.

  Anyway, we left and decided we would grab some fast food before finishing the errands I had to do in town.  As we go in, Lillian has pulled off her mask .  She and her older sister are fussing about it and I haven't even had a chance to get it back on her and the lady behind the plexy glass is shoving a mask at me urgently, loudly telling me she needs a mask (which can be seen in Lillian's hand).  Without even thinking I barked at the woman that she had a mask, she has special needs and then proceeded to replace the mask, take a breath and place our order.  When we sat down, I felt regret.  I didn't mean to sound snippy, but I'm sure I did.  Not only was I still in recovery mode from the dentist, I was probably a little hangry, and if you read my last post, you know I'm not in a great mental state. So, lady in LJS, if you happen to read this, I'm sorry.  It wasn't you,  it was me and I'm sorry.  I hope my extra kindness after our initial meeting showed you I'm not an evil hearted person. Ironically, she served us our drinks, us unmasked at a table, no plexy glass, closer than when we arrived at the counter. Think about that for a minute...

She will see her pulmonologist this week for a routine visit and she's due for her cardiologist as well.  I expect nothing new.  Dr. Pulmo will probably be my last post before Christmas.  

When it's hard to be grateful for "normal"

 December has been a hard month for me.  Emotionally, I've been kind of a mess.  Perhaps it is indeed "COVID fatigue" or maybe not.  Maybe it's just the circumstances of life feel heavier.  I'm not sure.  Tears are readily available  these days.  As the mother of five daughters, I've experience puberty many times with girls and all the changes that come along.  When it comes to Lillian, I've heard a variety of stories from doctors and nurses stating puberty comes sooner for kids with special needs or she's so small I don't expect puberty until much later.  Lillian is walking thru this new season.  I am sad with a capital S.  It is so dreadfully unfair that she has to walk through this and of ALL things why does this have to be her "normal"  for her hard fought life?  The irony of the whole thing is not lost on me.  The prayers, the days, the nights. I've longed for something "normal".  A lump is gathered in my throat and tears are leaking out.  I never liked that my other girls had to venture these waters either, but you know, it's a part of being a woman and eventually, God willing, it allows them to experience motherhood.  The dagger slides deeper....or that's how it feels at least.   The body grows and changes and her mind doesn't.  It's not fair.  It hurts.  Choices are not mine.  It's hard.  That's all.  

So, if you're reading this and are walking through a hard time, I'll leave you with this and I'll keep looking up.

Isaiah 43:2

When you go through deep waters,
    I will be with you.
When you go through rivers of difficulty,
    you will not drown.
When you walk through the fire of oppression,
    you will not be burned up;
    the flames will not consume you.

HAPPY 14TH BIRTHDAY

 I stand in awe at the grace and mercy of God.  14 years we've been given.  The years have not passed by quickly.  The days have been long and sometimes weary.  BUT!!!  Look, look what the Lord has done.  

I could look at 14 years and see all the pain, all the hardship, all the tears.

Instead, I see beauty, I see perseverance, I see strength, I see hope, I see goodness, I see compassion,  I see unwavering, unfailing, never ending LOVE.  

Happy Birthday!

One Month Later-Mom update

 Exactly one month ago I got sick, which most of you know.  I never really ever felt well.  On August 10th I went back to surgery for laser lithotripsy and new stent placement.  Less than a week later, still not feeling great all week, I started to feel really badly.  Simultaneously, my temperature spiked and I consulted the doctor who directed me to return to the ER.  My vital signs were crazy high, heart rate, bp, temperature...I felt absolutely terrible. Believe it or not , I was severely septic again with kidney infection and UTI.  After a CT and some discussion about transferring me out to a different hospital, it was determined I would not need surgery again and I'd be readmitted to the ICU. They were having extreme difficulty trying to get sticks on me for anything.  I hate ABG"s....they draw those from the arterial line in your wrist, and she failed getting the first one.   Believe it or not, this time was actually worse than the last.  I ran a 103+ degree fever for well over 24 hours with body shaking chills. The lactic acid in my body kept me physically tensed up.  Medication did not even touch the fever.  I was moved into a "regular" room Monday evening with all the same things going on and I also got a catheter placed as soon as I was in ICU. After my fever seemed to have broke, I became so nauseated I could not think about, look at, or even  consider eating and the dreaded headache had also settled in.  I felt ravaged.  By the early morning hours of Wednesday, nausea turned into vomiting and I was starting to lose it mentally.   They finally gave me a "cocktail" of drugs that pretty much just knocked me out and when I woke I did feel somewhat better.  By evening, they wanted to see that I could eat and they let me decide if I wanted to go home, which I did.  Matt was home one day and had to return to work Friday.  Thursday, I became so bloated, it appeared as if I was nine months pregnant about to give birth.  Saturday night is the first night I could sleep in my bed, and my ankles had turned into elephant feet with sever swelling.  Nausea has been bad each morning, but seems to pass pretty quickly.  

I felt pretty good yesterday until I had to go in for the stent removal.  About an hour after that I had severe pain and lots of cramping for the rest of the afternoon/night.  Could not sleep on my right side.  Today, I'm exhausted.  Mentally and physically worn.  Thank you for your encouraging words and prayers and cards from those who have sent them.   They urologist extended my antibiotics an additional week in hopes of this not happening again, he said the risk was high because the bacteria could be attached to the stent and stone fragments.  The general consensus is that they never cured me of the bacteria in the first place and when they did the laser surgery they just stirred it all up again.   I will need to have a renal ultrasound and KUB xray next month to check the health of my kidney and see the urologist again.  

Dentist Appointment

 Lillian had a routine dental appointment today, our first since quarrantine.  It wasn't her best appointment, but it wasn't her worse either.  Her tooth is still broken, but it doesn't appear to be changed since her last check up, which I thought was good.  They put a special coating on it to help protect it each time.  I just wish she wasn't so terrified every time.  I wish it didn't make me feel so stressed out that she's so terrified.  At least I didn't feel like I needed medicated after it was over.  Her hygenist is so amazing.

On the Mom front, my recovery had been pretty terrible. I had the "normal" pain associated with having a stint and stone I guess, but I also started to suffer from debilitating 12+ hour headaches.  I'd have maybe a four to five hour break and right back to a pounding headache.  My adult children convinced me to go in to my PCP and wouldn't allow me to drive, which is probably wise.  They, of course, couldn't really zone in on any one issue and they COVID tested me...which was negarive.  They did advise to call the urologist to ask if they could change my antibiotic.  It was another full 24 hours before they called back and they discontinued my antibiotic.  I woke up the next morning, mostly headache free.  I had surgery again this past Monday to remove the stone, however, it stubbornly would not be moved with their basket technique, so they did laser lithotripsy and put in a new stint which gives me incredible pain off an on.  It comes out next week in the office.  I want it out, but I'm dreading having that done in the office...if you get me drift.  

I will officially resume all of my at home meds tomorrow and yesterday as much as I wanted to drop a blood pressure medication, my blood pressure was off the chart yesterday, so...I shall continue.   That's the news form home at the moment.  Still staying home...Ezekiel is in remote learning at least for a semester and day one was ok, but today found us both in tears...it's stressful.  Thank you for your continued prayers.