I Will Lift Up Mine Eyes Unto The Hills.....

{Psalm 121:1-2}

"I will lift up mine eyes unto the hills, from whence cometh my help.

My help cometh from the Lord, which made heaven and earth."

Hi friends!

     I do apologize for the delayed update.  There are so many things I am trying to wrap my head around all the while still recovering so please bear with me while I try to recollect the many events that have taken place since I last wrote.

     

Preparing to go into "surgery" for my nearly
5 hour dental procedure.

On Tuesday, July 16th, I had to arrive at UNC Chapel Hill hospital at 6:00am for extensive dental work under general anesthesia.  We, of course, spent Monday night in a nearby hotel seeing as how it is a 3 hour drive from our house.  I was under anesthesia for around 5 hours while they extracted one wisdom tooth and did 11 fillings.  It has been a rough recovery to say the least.  We are unsure why exactly it has been so incredibly difficult, but we suspect it could be due to the anesthesiologist mistakingly hooking me up to LR (lactated ringers - a form of saline with electrolytes mixed in) while I was under (which I can't have, by the way).  I got about a third of the bag before I came out of the procedure and my family noticed (I was still under).  We drill into them the importance of my only receiving plain saline, but I guess she just forgot, and I can see how someone who is doing that constantly all day long could make that mistake.  However, my blood pressure has been a horrid issue.  With wearing compression hose I can keep it mostly in the 90s over 50s range but without wearing them it drops into low 80s over low 40s and I nearly faint if I get up at all.  On top of all of this blood pressure yuck, I have continued to have pain in my teeth on the right side.  We contacted the dentist that did the procedure to ask if it should still be hurting and she was perplexed because my symptoms were consistent with cavity, but she was looking at the X-rays and didn't see a reason it should hurt.  She told us to ask my local dentist to take a look and see if maybe some of the fillings they did were a bit too high (since its hard to tell when they do it under anesthesia) and causing certain teeth to hit before others, making them sore.  Well, I went yesterday and he smoothed a rough spot out, but didn't find any teeth that were too high.  He took a look around at my teeth to see if he could find a reason for my pain and clinically everything looked good, but he decided to do some X-rays, not expecting to find anything, but just to make absolutely sure he wasn't missing anything.  He got a shock when he found multiple cavities still there.  The biggest (and most likely the source of a major portion of my pain) is on one of the baby teeth that I still have.  Yes, I'm 25 years old, but I was made unique (along with an aunt, uncle, and my brother - its gotta be genetic! ;)), never losing my K9 baby teeth and the adult teeth remaining set far back in my pallet.  The touchy thing is although that baby tooth is still alive, it has very little root left, and the adult tooth in the right side of my pallet has decided to move forward; however, it is still not in the track where it will move down correctly.  SO, them touching that baby tooth to repair it can be VERY risky because it could cause it to die and fall out, leaving a gap because my adult tooth wouldn't just move down like it should.  To fix that issue I would have to get braces again and have oral surgery where they go up, attach a chain to the tooth in my pallet, and slowly (like over months and months) guide it down by routinely tightening the chain. My local dentist wasn't too happy when he found the multiple cavities that hadn't been repaired and plans to talk to my UNC dentist and try to figure out what went on and why there are still issues left untreated.  This has been really hard on me because I feel like I'm stuck between a rock and a hard place.  Any of these choices I have involve general anesthesia and a lot of physical trauma, and I can't just leave it either.  I was up until nearly 3 am this morning with teeth hurting.  It is very discouraging to say the least when you go through so much and come out with continued issues that you went in for plus dealing with your body's response to everything...and knowing you will have to return.  Please pray for me as I make some pretty rough decisions in the very near future.

     With all of this mess with my dental health, I have been unable to do any new formula trials or try the new medicine.  Going through all of this really makes me realize just what I took for granted last year.  This year has felt like I'm in a pit of sinking sand, slowly sinking and the more I grab for a lifeline, the deeper I go.  But, as the Scripture verse at the beginning of my post says..."I will lift up mine eyes unto the hills, from whence cometh my help."  The Lord knew all of this a very long time before I did and He also knows what is coming in my future.  Though I'm pretty petrified and very disheartened, I need but take one blind step at a time and trust all to my loving Heavenly Father Who knows each step I must take.  Is it easy? - not by a long shot.....especially for a girl like me who does NOT approve of being in any vessel that is not under my control (yeah, you won't catch me in a casket on a roller coaster!).  I have to keep reminding myself that I am in truly perfect hands that belong to my precious Savior Who loves me more than anyone ever could.

     I'm constantly reminded of my Lord's abundant love in the way He sends me encouragement just when I need it...... After yesterday morning's dentist visit and getting all of that hard to process information, I received a reply from the nutrition company that made the previous (my only tolerated) formulation of my formula, informing me that they are sending me their remaining 12 cases (48 cans) of the old formulation to help buy me more time to trial new formulas and (hopefully) find one I tolerate.  Just when I so desperately needed some form of happy in my day, I received that wonderful news!

{John 14:27}

"Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you.

Let not your heart be troubled, neither let it be afraid."

As much as this mind of mine would love to convince me that my Jesus doesn't truly care (and trust me - it has been a battle) I'm reminded of the lyrics to this little song I used to sing as a tiny little girl...

"God is so good,
God is so good,
God is so good,
He's so good to me!

He cares for me,
He cares for me,
He cares for me,
He's so good to me!

God answers prayer,
God answers prayer,
God answers prayer,
He's so good to me!

He loves me so,

He loves me so,

He loves me so,

He's so good to me!"

It is amazing how seemingly meaningless words you learn as a tiny child can be the ones that have the biggest impact on your life when you grow up!  I'm so grateful that no matter what goes on in my life, I can always know beyond a doubt that God is indeed good, loves me unconditionally, and never makes a mistake!

Thank you for sticking with me even through long, drawn out updates!  Y'all truly mean the world to me and I covet your prayers and encouragement!

Taking Life One Unsure Step at a Time...

                                                        Allison

                                                       

What A Week!!

Hi There!

     This past week was a doozy!  I had major appointments every day except Monday.  Tuesday was Charlotte for my local hematologist which is an hour travel one way, Wednesday was Wake Forest for my geneticist which is 2 hours of travel one way, Thursday was Charlotte for my nutritionist, and Friday was UNC Chapel Hill for the dentist and pre-care anesthesiology which is 3 hours of travel one way....and Saturday I slept past noon! ;)  So I am going to attempt to update on all of those appointments plus inform you of the upcoming events...all while trying to keep this short!  We will see how this goes.....

~ Tuesday - hematologist/local mast cell doctor ~
We are continuing the daily saline infusions with potassium as my potassium continues to bounce from low to borderline and my fluid intake is no better.  We are also planning to re-trial a medication that I tried a long time ago to see if I might tolerate it better seeing as how I now have the continuous IV benadryl pump and have a feeding tube to administer it through instead of having to take it by mouth.  It is a mast cell stabilizer specifically for GI issues so we are hoping it may help me tolerate more nutrition better.

~ Wednesday - geneticist ~
We had a really good appointment as always.  She had some suggestions for comfort with the body aches I've been having and such.  Sadly, she had some really sad news at the end of the visit...her bosses have told her she can no longer see any adult patients so she can't be our doctor anymore.  She is a wonderful, caring, compassionate doctor who is more of a friend and it was really hard to say goodbye!

~ Thursday - nutritionist ~
First, I will give you a little background story so you will be up to date with the current formula situation.  I tried the new formula and it did NOT go well.  I tried it twice in desperation for it to work and my body wasn't cooperative.  So right now we are trying our best to find an option before we hit a crisis point.  I still have a small stock of the old formulation that I tolerate, but that won't last much longer.  We were told of a pure amino acid mix that you had to add things to in order for it to be complete.  SO, the nutritionist at the nutrition supply company said I just needed to go to a nutritionist that specialized in allergy and simply get a recipe.  So I went to my nutritionist for a recipe....only to be informed that is not so simple and not acceptable for a J tube.  Lovely!  So I was given multiple different samples to try which all contain things that are known to make me quite sick.  But right now that is the best option I have and its quite unnerving to think if these don't work... I'll have nothing.  So PLEASE pray about this whole mess.  I just wish my formula company would've heard the saying "if it ain't broke, don't fix it!" :/

~ Friday - UNC dentist and pre-care anesthesiology ~
I went to be evaluated for repair of multiple difficult cavities that my dentist found at my last visit.  She was shocked that I was back so soon (a little over a year) since my last major dental procedure requiring general anesthesia.  She agreed that I have some major issues again and need them repaired under general anesthesia.  She was trying to figure out what on earth has caused such major issues in such a short amount of time.  It was discovered that the natural hard candy I have been constantly using to help moisten my mouth and keep my sugar up is indeed wreaking havoc on my teeth.  I have been having a fit out of my blood sugar lately because of my poor nutrition and the only thing my body can absorb to raise my sugar is the hard candy.  I can't tolerate bolus through my feeding tube and anything I eat comes straight out of my stomach drain so my body can't use any of it to raise my sugar.  This puts me in a tight spot because I have to suck on candy when I have much exertion to avoid a glucose crisis.  So in fixing the sugar issues I'm destroying my teeth.  I have an appointment to see an endocrinologist at the end of this month so I'm hoping she will have some solutions for me that won't be so detrimental on my dental health.

Now for the upcoming events.....
   I have a routine appointment with my PCP tomorrow (Monday) morning and then I leave to go to Chapel Hill.  Lord willing, I will stay the night in a hotel, have my dental procedure done under anesthesia early (most likely arrival will be at 5am) Tuesday morning, and, if all goes well, head home Tuesday afternoon.

Hopefully I didn't ramble too long and you've made it this far because I have super exciting news to share...........

The moment I held little Valerie for the very first time...

My new niece, Valerie Rae Workman was born on Sunday, June 30th!  She was 10lbs 3oz and 22in long.  Auntie Allie is ecstatic and can't wait to spoil you rotten, Little Princess. :)

Anyhow, Thank you so much for your prayers and encouraging words...I appreciate each and every one!

Taking Life One Crazy Week at a Time...
                                                         Allison