Long Overdue Update

Please accept my sincere apologies for the long delay in updates.  I have been in a sort of rebellious mood after Clark's cast came off.

And, the cast did, in fact, come off.  He did well during the surgery and his recovery has been slow but steady.  In less than a month following cast removal, he was sitting up.  Just this week he  has started crawling and pulling up to stand.  I just stare in amazement.  He started crawling a year to the date of his NICU discharge. 

There are a ton of other things going on with Clark, and I will try my best to make it short and simple.  First off, he has had lots of trouble lately not gaining weight.  He hasn't gained any weight since October.  This is really bad, considering how young he is.  He's 14 1/2 months old and can still wear 0-3 month clothing.  His doctors are very much in favor of installing a feeding tube.  We are not.  We have a week left to fatten him up and show them that we can do it.  It doesn't help matters at all that he refuses to drink any type of milk.  The good news is that he has gained at least 10oz in the past week, the bad news is that we have to park him in his highchair literally all day long and feed him.

Another problem we're facing is his teeth.  They're coming in yellow and we've been told it's because of the large doses of antibiotics he received in the NICU.  That means that his teeth are fragile and much more susceptible to decay than normal baby teeth.  We have an appointment with a dentist within the next couple weeks to figure out a plan of action.


Clark had the flu in February and was very sick for a week.  He drank nothing but clear gatorade and pedialyte during that and lost an entire pound.  His lungs also suffered and he's now on daily inhalers so he can breathe well.  It's likely that his diminished lung function doesn't help his slow weight gain.

His vision is still very bad.  We got him glasses, but he would rather play with them than leave them on so they really don't benefit him at all even though he can definitely see better with them on.  He has an MRI scheduled for next week so they can look more closely at his optic nerve issue and possibly diagnose a syndrome that is associated with that (he has been given a preliminary diagnosis of DeMorsier syndrome.)  Basically DeMorsier would explain his optic nerve hypoplasia.  They will also look at his nasal passages and sinuses during the MRI, his pulmonologist suspects that he has some type of deviation in his nasal airway because he can't breathe through his left nostril.

Whew.  Well, I think I covered it all.  As much as our situation has improved in the last year, things are still pretty stressful in regards to Clark's health.  He's really blossomed in the past several months now, he says many words and his first word was "Bible".  He has a little Bible and he barely lets go of it and really gets upset if someone takes it away.  I hope that's a good sign of things to come.  He's a little guy who knows exactly what he wants and will tell someone if things aren't going his way.   I feel truly blessed that he is my baby and that we have him here with us.

Please pray for Clark's weight gain and also for his MRI next week, as he will have to be sedated.  We appreciate it so much. 

 

On the road again

We're headed to Dallas today.  We'll be staying at the RMH tonight (love them!)  Tomorrow is the surgery and you'll never guess what....I'm nervous (heh.)

Please remember us tomorrow morning and pray for Clark and the surgical team that everything can go just right and he comes out a happy, cast-free little 1 year old!  Your prayers mean more to us than you'll EVER know! 

I'll post updates via Facebook tomorrow: http://www.facebook.com/#!/abrandyisforever

The end is in sight.

Well, we're (hopefully) in the final stretch.  Today marks one week until Clark's next day surgery.  I'm nervous, of course.  BUT  I'm also very excited.  He should be cast-free, and I can't wait. 

Next Monday is also his birthday.  I have no idea how we'll be able to celebrate and do recovery, but I know that we'll at least be shooting fireworks as part of the celebration. Provided the surgery goes well, we hope to shoot the fireworks at 9 that evening.  If you're near us, check out the sky towards our place then.  If not, I'm hoping to get some pictures.

The plan is to go up to Dallas next Sunday, stay the evening at the RMH & then be up bright and early at Scottish Rite.  Please pray for us.  I'm afraid I'll be a nervous wreck this time, just based off of how last time went.  With lots of chiropractic therapy, Clark is finally back to normal and not throwing up all the time.

Also, pray for Clark's safety and that his hip is looking just right so that we don't have to get another cast.  We've been told it's a possibility and the idea of that is simply exhausting, but we'll do whatever it takes to make sure everything is squared away.

Thanks, everyone for the concern you've shown and all of your prayers.  We couldn't do it without you!

I've never experienced such an emotional end to a year.  I can't say, as I usually do, "I'm so ready to be done with the old year."  Of course, I'm ready...but 2010 was a year of extremes.   The joy of my life arrived but I also lost loved ones and friends.  January 17th brought the high point of my year, and several days following were the lowest points in my entire life.

There is one thing I can say for certain, 2010 will be a year I will always remember.  There were times I loved it and times I loathed it.  I can only pray that 2011 is full of joy and endless possibilities.  I wish the same to you & yours. 

Tis the season for updates...

Last Sunday evening, we were at the Ronald McDonald House in Dallas getting ready for Clark's day surgery the following morning.  Let me tell you, the RMH-Dallas goes all out to help their house guests feel as comfortable as possible.  There are parents of NICU babies, cancer patients, orthopedic patients (that's Clark!) & more that stay here.  To say it's a huge house is an understatement.  It's beautiful, clean, they serve 3 meals a day and have a number of activities for parents and families to participate in.  We really do feel right at home when we stay there.

 

 We got to the hospital around 6am and went to day surgery (which, we will remember next time, doesn't even open until 7am.)  So much for those reminder letters that firmly state to arrive by 6.  While Clark was being checked in, he was weighed in his old cast so that we could then weigh the cast once they sawed it off of him, and then reweigh him in his new cast SO we would have an accurate weight when we go to his RSV clinic every month.

So, we saw the day surgery nurse, then we saw the anesthesiology resident (cue menacing: dun dun DUNNNNN).  A little bit later the anesthesiologist comes in, who I find out later, is the head of anesthesiology at the hospital.  She scoops him up and carries him away to the OR.  Surgery takes about 45 minutes & his doctor comes out to fill us in.  His hip looks perfect, it didn't pop out when they "manipulated" (I'm thinking, in OR speak, that roughly translates as "brutalized") it.  He's now in a shorter cast (cue angels singing) and provided all goes well, we should be done with this cast business by mid January.  I'll be holding my breath until then, but I must say that things have been MUCH better since we got rid of the blue cast.

Ok, so you know there's a BUT coming, right?  For starters, Clark came back from the OR screaming and looking like this:

 

Which, ok, I know...I'm his mother, and I will notice tiny differences.  But just for the sake of explanation, and because I have the pictures, let me show you how he looked following his last two (invasive) surgeries.  As a reminder, during this surgery all they did was replace the cast & inject dye into his hip socket, no scalpels.

On the left is his hernia surgery in March and on the right is from his hip surgery in October.  Both pictures are immediately following recovery, just like the 1st one.  He's normal colored in both and not screaming.  So you can see where I might have sensed something was amiss.

It took me several minutes, but once I was able to calm him, I noticed some very red, angry looking scrapes beneath both ears behind his jaw.  I've circled it in this picture: 

Long, long story semi-short:  I asked the nurse what the scrapes were and he said they looked like they were from a jaw thrust which they use to "get the baby to scream after surgery" (his words).  I let it go at first because I'm like, well...ok, makes sense I guess.  I asked the anesthesia resident if everything went ok during surgery.  He said "oh, yeah."  Then Clark started vomiting (which also has never happened post-op).  He continued to vomit after every bottle on the way home and the following day.  We went to see our dear friend, who is a chiropractor, and she said his neck was quite out of alignment.  So, then I start thinking, ok...jaw thrust, neck problems...um....hmmmm.  

Let me insert that I did use my google-fu to find out more about jaw thrusts, and from what I can tell, they're used when an infant patient isn't oxygenating well.  Other methods used are foot or chest thumps (with which we are quite familiar.)  But nothing mentioned using jaw thrusts to awaken a patient from surgery, or really anything other than using the method as a life saving technique.

So I got in touch with the head of anesthesiology (who, remember, was the attending during surgery).  I was pretty hot at this point, but I laid it all out on the table.  Q: Why the jaw thrust? A: "It's a very gentle procedure, but I'm looking back through the notes and I see there were no problems during surgery..."  So again....WHY the jaw thrust & it's not very gentle if there are scrapes!?  I never did get a definitive answer.  Just that she left the resident holding the vent tube while she "charted". Oh..and said resident is going into a staff doctor position next week.  Watch out kids...

I requested to get the anesthesiologist from our 1st surgery from here on out.  Request granted.  You better believe I'm going to hold them to it.  And guys, get yourself to the chiropractor...they work magic.  Clark's vomiting improved after 1 adjustment and has virtually ceased after 2.  Better yet, if you're in central Texas, go see Dr Jessi at Isdale Chiropractic in Killeen...and yeah, tell her Clark sent you.

Ok, so, now that you've heard the extended version of our cast #2 saga.. I'll show you the cast.

 

Let me just tell you that Clark is *thrilled* to be in the shorter cast.  He can snuggle closer, kick his feet around AND turn in a circle on the floor!  That's big stuff for a baby in a body cast.  The top of this one comes up pretty stinkin high, unfortunately.  But, the faster he grows, the smaller the cast will seem.  And January is just around the corner.  We cannot wait for him to be cast-free!

`Tis the season..for photography, apparently.  I'm crossing my fingers that Santa brings me a new lens.  (Oh, and some much-needed photography lessons..heh.)

 

 

I know you probably get tired of hearing this, but I really do appreciate you caring enough to take the time to read about Clark.  I don't post near as often as I once did, but rest assured, I don't plan on leaving the world of blogging any time soon.  I hope this season finds you well and that you can enjoy it with the people who mean the most to you in this life.  Please be in prayer, especially during this season, for the families who have lost someone.  No one can bring comfort like God.

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!