God is GOOD!

I last wrote on June 6th requesting prayers for Peyton because she was coming off all antibiotics for the first time in months.  I have to say that God is so very good.  Those prayers are being heard and are being answered!  She hasn't gotten really sick since she came off.  The occasional fever, yes.  The occasional odd thing, yes.  But definitely not really sick and definitely not needing to go back on antibiotics!!  Praise God!!!  She's sounding pretty junky and requires a good deal of suctioning lately.  She's been running low fevers and has increased heart rates lately as well.  However, on the whole, she's doing remarkably well, all things considered.  She's not where I want her to be, but I'm sure with more and more prayer, she'll get there.

The not so great news right now is that Peyton's home nursing hours are being cut from 84 hours a week to 70 hours a week effective July 3rd.  70 hours sounds like a lot...and it is.  But she needs every one of those hours!  She was allotted 84 hours a week back in February and it wasn't until this month that she actually really ever GOT all her hours consistently.  Thank God we changed nursing agencies, but now her hours are being cut!  I suspect it's a budgetary issue and not so much that she doesn't need the hours.  She needs them.  Even with her improving, she needs them.  I've been sleeping in her room for 2 years.  I have to be there through the night just in case she starts gagging and needs suctioned, or something else happens.  The loss of 14 hours a week means 14 hours less hands on time with Peyton.  It means less interaction with Peyton.  It means less therapy time.  Why?  Because I am the one who will pick up what the nurses won't be doing and I have more than just Peyton to be concerned with.  I will do the best I can, but it's going to be a big adjustment and it, no doubt, will impact what quality of life our family has right now.

Sigh.

On a positive note, I am really trying to listen to what the Lord is telling me through all of these trials.  I wrote a guest blog on a friend's blog the other day about trusting God and finding strength.  The link is:

http://www.naptimediaries.com/2011/06/trusting-and-finding-strength.html

Little did I know that only two days after I wrote that, I'd be needing to re-read my own words to draw some strength from to make some sense out of today's situation with the nursing hours.  I followed up what I wrote there with a blog post on my own blog:

http://fontenblog.blogspot.com/2011/06/when-trust-in-lord-is-tested.html

I don't think I have most of the answers most of the time, but I've had a lot of positive feedback from the posts, so please feel free to share my blog with others who may be in need of encouragement.

And back to a positive note...

We've been with the new nursing agency for a few weeks or so now.  I have to say it is a decision I do not regret at all.  The reduction in hours has nothing to do with them, and they are sympathetic to our situation but it's not up to them how many hours Peyton qualifies for.  Since switching agencies, my stress level has diminished considerably, although I'm still fairly stressed.  

Just to update you on me, lest anyone thinks I have no time to take care of myself (which is often true!), I went for a physical myself a couple weeks back.  It had been a while since I had a general physical.  "Female" stuff, I definitely keep on top of, especially considering my family history!  But general stuff, I haven't managed to keep up with lately.  I have a cyst on my left elbow.  It's been there a LONG time - far longer than I'm willing to admit.  I am seeing a general surgeon in a couple weeks to discuss having it removed.  It's very small and only causes pain once in a while.  It's right where you lean on things with your elbow, so it does get irritated every now and then.  Very annoying.  Not a big deal, and nothing to worry about - but it's got to go!!  I've been having numbness in my arms/hands (continuously on the left side and once in a while on the right) for close to 2 months now.  Talk about annoying!!  I have to go for a nerve conduction study in a couple weeks.  I'm sure it's probably just a pinched nerve in my back or neck and nothing more.  Not worried - just annoying!  I have high cholesterol and low vitamin D.  Nothing I have to do anything about immediately.

So there you have it.  All is fairly well at the moment!  Thank you for the prayers!  They are working!!

Fervent Prayer Needed

Peyton saw the Infectious Disease specialist this afternoon.  We saw him for the first time a couple weeks back and he changed her antibiotics.  She actually went downhill for a bit afterwards - enough to where we were starting to get a bit concerned about needing to go to the ER, but it never got to that point.  We saw him today as a follow up.  Peyton is no better or worse right now than before the antibiotics were changed.  Therefore, it's not likely this mycobacterium which has been making her so sick.  As for what it is, I have no clue.  However, there's no point in keeping her on antibiotics for this if they aren't actually making her better.  The last thing we need is to keep all kinds of antibiotics going and discovering down the road sometime that she's become resistant to them.

So now we wait.  We really need lots of prayers for Peyton now.  This is her first time off all antibiotics since the beginning of February.  Even before that, she spent the better part of the year before off and on antibiotics.  We're concerned about what happens now that she's off of them.  I expect the next couple days might continue as usual, but I worry about the days and weeks after that.  The last thing we need (yes, I realize this is a second "last thing" in this entry!) is for her to be winding up in and out of the hospital like she was all last year.  So please please pray for her health to remain stable (or even just get better altogether!!!) and we aren't thrown into chaos again.

James 5:16 "...The effective, fervent prayer of a righteous man avails much." (NKJV)

Proverbs 3:5 "Trust in the Lord with all your heart, and lean not on your own understanding." (NKJV)

Will keep you posted on how things go.

Genetics

Back on May 11th, I eluded to a piece of potential good news, but I stated that I needed more info before I could really discuss it.  Well, here goes...

First, I hope you didn't pin your hopes to that statement, as it hasn't exactly turned out as I'd hoped.

Several weeks ago, after I had posted something about Peyton's hyperflexibility on facebook, a friend commented back to me about a syndrome he had heard about that sounded similar to what he'd heard me mention about Peyton.  I looked into it and, WOW, Peyton had something like 20+ of the symptoms of this particular syndrome.  It's called Ehlers-Danlos Syndrome.  There are several forms of this syndrome.  Ron and I got pretty excited that after 5 years we may finally be on to something.  As Peyton would see doctors and therapists after this discovery, I would mention it to them.  I even have a checklist of symptoms printed out and in her go bag, ready to show whoever I could show it to at MUSC.  As I would show it to various specialists, they all would say how interesting it was and how it was certainly worth looking into.

I had contacted Peyton's neurologist about this, as we had been discussing the extent to which we'd go to figure out a diagnosis when we saw him in April.  I urged him to speak with genetics and even to possibly contact her former geneticist in Houston.  I didn't get very far with this, but when I brought Peyton to the pediatrician for her well child check up a couple weeks ago, his office put in the call to genetics for me (here at MUSC).  That led to the nurse in genetics calling me, getting some info, and then ultimately letting me speak on the phone directly with Peyton's geneticist.  I mentioned my thoughts on this syndrome.  He preferred to see Peyton in the clinic, but our next appointment wasn't until September.  He put me back through to his nurse and she rescheduled us for June 1...today.

Over the past few weeks or so, I've been getting pretty pumped up about the possibility of having a diagnosis.  Please note, this would NOT cover EVERY issue Peyton deals with.  It's long been my feeling that she could have multiple syndromes.  I knew going into today's appointment that there was the chance that the doctor could completely disagree with my thinking she could have EDS.  I knew going into today's appointment that even a diagnosis of EDS wouldn't cover every issue.  I knew I was taking a chance by bringing this up.  However, as they say, nothing ventured nothing gained.

So, the good news I was hoping to be able to share with you was that of a diagnosis.  I'm not doing that.  I can't.  It isn't what we're dealing with - most likely.  While she has several of the symptoms of EDS, it's quite possible they are symptoms associated with something else as well...we just don't know what that.  You see, people with EDS do not have the level of neurological impairment that Peyton has.  

But here's the good news.  The doctor did a very thorough physical examination of her - noting various odd bruises she's been getting, the clubbing of her toes, and other physical 'deformities' (for lack of a better word).  He talked a lot.  At first, I was fairly discouraged, but as time progressed, it started to make some sense and he seemed to want to try to help with something this visit.  In the 3 years we've been here, there's been nothing that genetics could do for Peyton here that hadn't already been done in Texas.  At the end of the appointment, we were sent to the lab where they drew blood for a few different tests he wanted done.  I have no idea how long it will take to have answers from those.  I know from past experience, genetics testing is not instantaneous - it can take weeks.  

While that bloodwork is being processed, the geneticist is going to get with the neurologist to discuss Peyton.  They are both thinking of a possibility of a mitochondrial disorder.  This involves further testing.  The unfortunate part of this story is that testing for a mitochondrial disorder isn't via a simple blood test.  It is done with a muscle biopsy.  Ouch!!  The doctors will discuss this and get back with me.  It sounds like it will definitely be done.  It is going to take a bit of a coordinated effort to get it set up though.  MUSC can't actually process the biopsied sample.  It has to be sent to some lab in Atlanta, GA, so it will involve some coordination with that lab.  I'm not sure if it's just a "stand alone" lab it's going to or if it's going to somewhere like Emory or another large medical facility.  I just know it can't be done here.  The biopsy, yes.  The study of the sample, no.  It will involve an overnight admission whenever it does happen.

So, that's my story.  It's not the awesome news I had been hoping for, but it is good news in that we're trying to figure this thing out.  I feel, today, like we're back on the road to trying to get a diagnosis.  Not that they weren't doing anything before - they couldn't!  You can't just run random tests for no good reason - when they have no clue what they're dealing with, you can't run tests!!  All the "general" genetics tests were run long, long ago.  Any testing now has to be fairly specific.

I would just ask that you pray for wisdom for the doctors.  Pray for knowledge, understanding and guidance in trying to pin down a diagnosis for Peyton.  As always, we know that even all these tests could turn up nothing for us.  I would ask also that you pray for peace and understanding for us no matter what the results are - whether there are results to report or not.  And pray for Peyton because she's the one physically impacted by the testing process and she's the one living in that little body that's shrouded in mystery for all of us.