Thursday, June 23, 2011

I'll take that anyday!

On tuesday, Austin went to the opthalmologist.  With hydro kids, they recommend seeing an eye doctor once a year just to check for any pressure behind the eyes.  I figured we might as well get it over with it as soon as possible, so we went.  Poor Austin got upset when they dialated his eyes, but he was a champ overall.  Doctor said his optic nerves look great and there was no pressure behind his eyes.  He is more far sighted than he should be at his age, so she wants to see him back in four months to check and see if he's vision has gotten better.  (On a side note, Jake saw the same doctor around 6 months of age-again, to check optic nerve due to being deaf-and was noted to be farsighted too which got better over time).  So we're just hoping that it gets better over the next few months as well for Austin.  Overall, it was a good visit and I'll take that....

Today we went for a check up with the neuro surgeon.  She told me that Austin looked great.  His head is measuring exactly how it should and his incisions are completely healed.  She said that she anticipates the MRI to show Austin's brain fluffing out.   She does not anticipate neurological issues with Austin!  We discussed how Austin is favoring his left side of his head (i.e. always turned on that side, looking on that side) and she gave me the name of a pediatric physical therapist to see until we can get an evaluation with Early Intervention.  Its something we want to be proactive with since we don't want it get any worse as he gets older.  We don't see the surgeon again until August. 

I got home and called the physical therapist and set up an evaluation for next week.  So in the past 10 weeks, the "worst" news we have heard is that Austin may need physical therapy and could need glasses someday....I'll take that anyday!!! 

Praising God for my wonderful blessings everyday...

Mr. Smiley Head


The bros

(Jake's masterpiece of Mommy and Austin)

Taking a rest during some tummy time...

Friday, June 17, 2011

2 months old and counting...

Its gonna be hard to refer to Austin as little much longer.  We had his two month old check up on tuesday and he weighs a whopping 12 pounds, 12 ounces!!!  Yep, he gained over 3 pounds in a month!!  Insane!!  He also is now 23.25 inches long (up 3 inches since birth!).  These measurements put him in the 75% percentile on the charts...which just happens to be the same percentile as his head circumference.  So, one could say that his head is proportionate to the rest of his body.  Pretty awesome!!! 

Such a big boy...

Monday, June 6, 2011

8 weeks old

Well, tomorrow Austin will be 8 weeks old already!  Gosh, time flies!  And tomorrow also marks 4 weeks since Austin's shunt surgery!  Wow!!  This past weekend we noticed that Austin was getting more irritable than usual and then on saturday, his soft spot was very sunken in and the sutures on his skull were more prominent.  I called the surgeon to see if maybe he was over-draining again.  She said that she was not inclined to turn it down again since it was already on a low drip, and wanted us to call her office on monday to set up a cat scan to see how the ventricles looked.  He seemed to be dehydrated again so I started giving him pedialyte again.  Well yesterday, Austin was pretty much back to his usual self and today he was even better.  His soft spot was still sunken, but not as much as it was on saturday. 

So this morning I called the surgeon and we went to her office this afternoon.  She took one look at him and said he looked great.  He is still dehydrated, but the skull looks great.  She said that it was just separated so much because of all of the fluid, that now the fluid is decreasing and the head is coming together nicely.  Huge relief!  Next week we head to the pediatrician for his two month check up.  Seems like we have doctors appointments once a week at least, between him and Jake, but I don't mind.  I'm used to it. 

Austin loved his bath today too for the first time.  He was so cute, just stared at me and enjoyed it with no crying!  Afterwards, he was a little happy head for a while.  I scrubbed off a bunch of the dried blood around his incision.  It looks much better now and he is really starting to grow into his shunt. 

Here's a cute pic of Austin checking out Holly...

Just hanging out...

Special day for Austin

We were so blessed on sunday to celebrate Austin's Baptism.  He had a special day filled with family and friends. He is getting so big...didn't even fit into his 0-3 month Baptism outfit!  Thanks to all who shared the day with us and special thanks to his Godparents, Aunt Natalie and Uncle Greg!! 

Wednesday, June 1, 2011

What is a shunt and how does it work??

So we've gotten a lot of questions lately about what an actual shunt is and what it looks like.  And seems like everyone asks "How long will it stay in for?" Well the answer is...forever.  Austin will always need a shunt because his body will always produce CSF (cerebrospinal fluid) and he will always have a small aqueduct that won't allow for the CSF to properly pass throughout his brain and body.  So, with all of that is what a shunt is...

A shunt is a narrow tube that allows excess CSF that has built up inside the skull to drain out into another part of the body (in Austin's case, the abdomen).  To drain excess CSF, shunts are inserted into an opening or pouch inside the brain called a ventricle, just above where the blockage is that is preventing the CSF from flowing properly.


All shunts perform two functions.  They allow CSF to flow in only one direction, to where it is meant to drain.  And they all have valves, which regulate the amount of pressure inside the skull.  When this pressure becomes too great, the valve opens, lowering the pressure by allowing excess CSF to drain out. 

Austin has a programmable shunt, which allows the shunt to be programmed for his individual needs, which could/will change as he gets older. 

A shunt has four main parts:  Upper catheter is the top most part of the shunt.  It is a small narrow tube that is inserted into the ventricle inside the brain that contains the CSF.  The Reservoir is where the excess CSF is collected until it drains into the bottom portion of the shunt.  The Valve controls how much CSF is allowed to drain from the brain.  And the lower catheter is the bottom most part of the shunt.  It is a narrow tube that carries the excess CSF into the part of the body where it will be absorbed.  In Austin's case, the belly.
Austin has a small (about an inch) horseshoe shaped incision at the top of the right side of his head.  Then you can see the tubing of the shunt, which I'm told will be less and less noticeable as he gets older (that doesn't matter to me at long as its working!! :))  He has another really small incision where the lower catheter begins and then goes down to his belly.  You can see the tubing going down to about his neck and then it disappears down his neck and down the front of his chest and stomach.  He has another incision right above his belly button.  When he cries and fusses, you can sometimes see the tubing going down his body, but otherwise you can't see it.  And he's not limited to what he does physically.  Maybe someday he may have some limits, but we already have one son who can't play football or wrestle, so its not a big deal to me if Austin can't do those things either.  Kevin and I actually joke all the time that our sons are going to be the "artsy" kind of kids...not the sports kind.  Haha, nothing wrong with that. 

Hope that gives you a better understanding on what Austin's shunt is all about.  Like I said, I'm still learning all of this myself, but its good to have some basic knowledge on how it all works. 

You know the saying, God works in mysterious ways?  Well, in my case, there is no denying it.  What family can say they have two kids with two different medical issues, and two different foreign objects surgically implanted in their heads??  Its just craziness.  But thank goodness for technology!!  (In fact, there are still some concerns that Jake's cochlear magnets can affect the program of Austin's shunt since that is magnet too!  But its very hard to keep a 3 year old away from his 7 week old brother!!!)  Ahhhh the things we have to worry about, not many people have walked in our shoes.  I wouldn't trade it for the world though!  Love my boys...

Here is a shot of how Austin's shunt looks...(its not as swollen now as it was in this pic last week)

7 weeks already

Yes, hard to believe that Austin is 7 weeks old already.  Its been a few weeks since I've last posted.  We've been busy.  And I'm happy to report that we've just been busy with "normal" things.  Nothing major to report other than Austin continues to do great.  He had his two week post op appointment last week and everything looks great.  His incision is healing very nicely and he just acts like a normal seven week old.  Can't even express the miracle and blessing we have been given with him.  I read back to my earlier posts after his diagnosis and I get sick to my stomach.  I wish I had known back then what I know now and didn't have all of those months of worries.  But I continue to put my faith in the Lord and have seen all that he can do and will continue to do for Austin, Jake and the rest of our family.   Blessed beyond words. 

We have decided to hold off on the stem cell infusion for now.  We were supposed to be going this month, but its a huge financial burden and since Austin is doing so well, we feel that it does not have to be a rush at this point.  Austin will have a MRI in August to see how his brain is fluffing out since the shunt was placed and if at that point there is anything alarming, we can always call Duke and get the infusion scheduled.  I still really believe that it can only help Austin in the long run, but I'm ok with waiting for now.

I have noticed that Austin likes to keep his thumbs tucked in most of the time.  I talked to Jake's physical therapist about this and she suggested that we do some infant massage with him, to get him to loosen up.  So now I just have to learn how to do it. 

Jake continues to be obsessed with Austin.  He just loves him so much.  And he's so cute with him.  The first thing he says when he wakes up is "Where is Austin"?  And the last thing before he goes to bed is to check and make sure Austin is ok.  I love it.  Here are some snaps I got tonight of the boys doing their daily "tummy time"...haha...