So the hours are ticking away and day surgery is fast approaching.  I'm on the edge of losing it.  I've had enough hospital for the rest of my life.  I'm sick of my baby having procedures done and going under anesthesia.  Yes.  I know how lucky and blessed we are that he's even here.  Still.  Enough of hospitals.

ps I still love you, Scottish Rite...just not right now.  It's not you, it's me.


In other news, Clark had his appointment with the ophthalmologist on Thursday. Annnnd...drumroll please...he's extremely near sighted.  He's getting baby spectacles.  They'll look like this:

He's finally gotten the diagnosis of septo-optic dysplasia.  The absent septum pellucidum part, as of yet, has yet to be confirmed by MRI, but that will come after all of this cast/hip business.

 The septum pellucidum is the guy I highlighted.  He is suspected to be missing in Clark's brain & is the one that is responsible for developing the optic nerve.

His optic nerve is what they call "hypoplastic" which is just a fancy word for "it's small, underdeveloped and therefore doesn't function fully".  At least we skipped the hypoplastic lung part.  So...optic nerve things, we can live with.  Of course, genetics may also play a part, as Jeramy is quite nearsighted himself.

On to the details...

Tomorrow [Sunday] we leave for Dallas.  We'll be staying at the Ronald McDonald House-Dallas again..it's a wonderful, wonderful house.  And then Clark is scheduled to be admitted Monday morning at 6.  His surgery should start at 8.  I'm asking for all of you to pray for him.  We just need everything to go smoothly and the best it possibly can.  Also, please pray for us.  I realize (and hope) that Clark will only be special needs for a short time, but it's very tough to handle some days.  I have so much respect for families who are dealing with this day in, day out for years.

I recently read a quote on Facebook from one of my very dear antepartum nurses, it read: "Faith can move mountains, but don't be surprised if God hands you a shovel."  I feel like God handed me a shovel last year.  And without that shovel we wouldn't be where we are today.  But I'm weary, in farm terms, I've been rode hard and put up wet, I'm draggin my heels.  Digging, digging and digging is hard work. 

Thank you guys for caring and especially for taking this journey with us by praying for us, and all your generosity and love.  We couldn't ask for more.

Thank You

I want to thank you, dear friends, for letting me have a little technology break over the past couple weeks.  I have pictures to share, but I'll post those soon.  I desperately needed to be away and recharge for awhile. 

On Monday, Clark is scheduled for day surgery in Dallas.  He will be getting a new cast (hopefully just to the knees this time!) Also, his doctor will perform an arthrogram to check the progress of his hip.  That involves injecting contrast into the socket and doing an xray to see how the ball & socket are fitting together.  We need some good news in that department so that his cast can come off asap.

In two days, Clark has an appointment with the ophthalmologist to check his eyes.  We've been cautiously awaiting this appointment for months now.  We know his vision is progressing, so we're hoping to not get a "legally blind" diagnosis.  But, the nystagmus is still there and his eyes (which seemed to improve) have now been crossing more frequently lately. Prayers are definitely needed.

Well, I hope to get some pics edited and post them soon.  I hope everyone enjoyed Thanksgiving.  Clark did...he sure does love key lime pie!

Amazing Stuff

A year ago, I would never have imagined we'd be where we are now.  This time last year, I had already been on bed rest for 9 weeks.  Clark had been without fluid for a month.  The doctors were still asking me if I wanted to terminate every week.  And most of you who knew me, along with myself and my family, were thinking the worst would probably happen.

I can tell you that in November 2009, absolutely, that I did not have a spirit of faith.  I was running on fear and frayed nerves.  I was just learning to pray for myself.  I had no idea what God was about to do in my life.

God gets all the glory in this.  He made me a strong person so I could fight for Clark.  He gave Jeramy and I the strength to get through 126 days of bed rest, then 75 of the most terrifying days of our life while Clark was in the NICU.

For this child I prayed, and the LORD has granted me my petition which I asked of Him.
 1 Samuel 1:27

 And it is God who designed the strongest and most wonderful boy I've ever known.  In his short 10 months, he has been through things that most adults have never experienced.  A machine breathed for him the first 3 weeks of his life, from that machine he got a terrible infection that nearly cost him his life.  His heart and lungs were compromised.  He's been through 2 surgeries, and is currently in a body cast.  If someone had told me just over a year ago that there are children who experience this, I probably would have had a hard time believing it.

I will praise You, for I am fearfully and wonderfully made
Psalm 139:14

I stand amazed, and probably always will, at what God has done for us.  It is certain that I don't deserve any of it, but such is the nature of God that he loves me even when I'm not doing my best.  We appreciate every prayer you've prayed for us over the past year, we know that we couldn't have done this otherwise.

 

Every good and perfect gift is from above.

 James 1:17

Pretty Good News

I got a call from Clark's doctor and the cultures came back positive for staph, but negative for MRSA!  Thank goodness.   The antibiotics he's on are overkill, but that's ok as long as it zaps the staph.  There's not much new news right now, but I figured that was worth a post. 

Halloween & updates

I have been so busy lately & craving a technology break that I've yet to post Halloween pics or our update from Scottish Rite. But, fear not...they have arrived.

Halloween consisted of Clark wearing his costume at Mama's house for all of 20 minutes.  No trick or treating, no candy.  It was an odd Halloween.  But Clark was very cute as, himself, of course.

 

Now, as for Scottish Rite, his doctor is very pleased with how everything is looking so far.  His socket isn't yet grown around the ball, but it takes time.  As long as the ball stays in socket, we're happy.

Ok, and now to the potential MRSA bump....I will provide a picture but if you're squeamish, I advise you not to look as it's pretty stinkin gross. Click below to proceed...

Quick Style

Ok, I wanted to leave a quick post about some recent findings this morning.  Clark has had a bump near his incision for several days now.  I didn't really think much of it as I know babies can get little heat bumps, etc in the diaper region and since it's near his cast I really didn't think twice about it.  But this morning it is huge and looks very bad.  Of course, the 1st thing that pops into my mind is MRSA, so we have an appointment in an hour to get cultures and have the doctor take a look.  Please pray that it isn't MRSA and if it is that it's treatable...very, very quickly.  Thanks you guys!!!

Short & Sweet

Oh boy.  The last couple weeks have been interesting.  Clark is adjusting well to his cast, far better than Jeramy and I are, for sure.  We're pretty sure he's teething (buckets upon buckets of drool...).  And this week he's had some allergy junk which is never any fun.  Needless to say, we've had very little sleep.

Tomorrow we head back to Dallas for Clark's post op appointment.  We're hoping all goes well with that.  I'm not exactly sure what all this appointment entails but I'm sure it's nothing big. 

Clark is eating like a champ recently.  His doctor wanted him eating 3 times a day after surgery and he's certainly doing that, sometimes having a 2nd helping.  He really loves oatmeal with applesauce and baby yogurt.  A year ago, I never even imagined I'd have a teething, eating boy by this time.  It's amazing how time flies and wonderful things happen.

I don't have recent pictures uploaded yet, so this will just be a short little update.  Thanks for being loyal readers of our superboy's blog and for all the prayers.  They're getting us through every step of the way.