Category: Isaac Update

I've been mulling on a new post all week.  Do you do that too?  You have something you want to share, but you're not quite sure how to go about it, so you just think on it for awhile?  That's what I've been doing.

I told you Isaac is making some transitions since his surgery.  It has been really odd, and we are still sort of processing and learning as we go along.

Let me start by saying that I began blogging in February of 2007.  As I have been working to move those old posts over to my new server, I realized that I began blogging in order to keep a grasp on reality and my sanity.  Truly, there was so much going on with Isaac, and it was so overwhelming, that if I had not stepped out of my self, in order to tell his story, I think I might have "lost it" a little.

When thinking over this blog post, I realized that most of you don't know what Isaac was like before I started blogging.  You didn't experience much of Isaac's life before the seizures took over.  So, when I tell you the new things that are happening you aren't going to understand some of it.  I will try to explain as I go along.

When Isaac had his shunt revision in December of 2006, they were unable to remove part of the shunt, the catheter.  It had been embedded in his brain since shortly after his birth, over 6 years earlier.  The skull had literally grown and calcified around it, and to remove it would have caused entirely too much trauma and blood loss.

The decision was made to place the new catheter right beside the old one.

Isaac began to decline immediately following this surgery.  You know all about that if you have read my blog for any length of time.

However, before that surgery, he was doing well: 

• He had learned to chew – it took an entire school year. 
• He played with ribbons and strings, chewing on them mostly. 
• He loved to look at books and would try to help turn the pages. 
• He used words with meaning to express himself. 
• He made minimal eye contact. 
• He turned his head to see things on his left side.
• He was learning to use communication devices.
• He picked up toys to feel them and look for tags or labels (so he could chew them).
• He noticed people who spoke to him and responded to them.
• He expressed excitement about going places and seeing people.
• He pitched fits when he didn't get his way.
• He jumped at loud noises.
• He had very sensitive palms and feet, and needed "brushing" to calm his sensory issues.
• He could stand and sit, on command.
• He was taking steps, with a therapist's help.

Can I just say…We almost have this same child again!!!

With the exception of the last item (because he has lost so much strength in the last 3 years and 4 months) he is doing all of the things in that list! 

His skills have been returning gradually since the last surgery, and we have just watched in amazement!  It's as if each morning, we are waking up to a new child.

While these things are astonishing, can I tell you something even more astounding???

We are only seeing a couple of seizures a day!!!

And beyond that — he is doing things he's never done before:

• He is picking up toys that make noise and shaking them, smiling when they make noise.
• He is making choices by grabbing the toy or movie that he wants.
• He is pulling our hand to his mouth when we are offering him a bite of food.

It is utterly amazing.

We don't know what God is doing, but we are cautiously thrilled by the things we are experiencing.  I say "cautiously" because we know the human brain is an magnificent puzzle; and quite possibly, as quickly as these things appear, they can disappear.

However, we are thanking God each day that we are experiencing these little miracles; and I just wanted to share them with you – my friendly readers – who have so faithfully walked the difficult path with us the last 3 years.

It is proof that although prayers may not be answered the way that we desire, we should not stop praying. 

God's answer will come when the time is right in His will, and then we will stand back in amazement, as we see what the mighty hand of God can do.

To God be all the glory!

Alesha

This was Isaac about 10 days ago, after getting his haircut.  This past Tuesday evening he started vomiting.  After determining he did not have a stomach bug, we got in touch with his gastro doctor. 

We changed some medication dosages, gave carrot juice (rather than Pedialyte) and watched him for about 36 hours.  That was when the gastro doctor suggested a trip to the ER.  We called his neurosurgeon before he and Doug headed out.

Isaac has a VP Shunt (link here), and it was determined after many x-rays, and MRI and an ultrasound that the tubing that goes from the shunt to the abdomen needed to be replaced.

The surgery went well.  The tubing had become brittle and blocked, and had to be replaced in its entirety.  There were some difficulties and some concerns about future surgeries of this kind for Isaac.  But those are tomorrow's troubles and we won't borrow from them today!

Naturally, my mind was elsewhere before his surgery, and so I have no pictures.  We do however have plenty of pics from afterward.

Isaac giving me the "I-cant-believe-you're-taking-pictures-now" glare, as Mojo the monkey looks on.

Telling Mommy it was time for a lemon swab.  His mouth was very dry after surgery.

Sleeping in a hospital is never a great experience.  The first night, Doug had the fold out chair, but when I got there, he turned that over to me.  I took a walk through the halls for the linens we would need, and I spotted a recliner.  I asked if it was being used, was told no, but to give them time to wipe it down, then they would bring it to us.

When I laid down at midnight – no chair.  I prayed myself to sleep, asking the Lord for a chair for my tired hubby.

At 1 a.m., no chair.  At 2 a.m.  At 3 a.m., the nurse came in for check vitals, saw that Doug was sitting straight up in a chair, sound asleep, and decided he needed a recliner.  In about 10 minutes, he was ensconced in this little beauty.

Answers to prayer are sometimes delayed, but when they come at last, they are very sweet!

If I had to title the following pic, it would be "The Princess and the Pea"!  Only with 7 blankets, a sheet and two pillows did I manage to catch a few winks on this medieval torture device!

I know this pic is very grainy, but it was too cute to leave out.  Isaac woke up at 4 a.m. as bright as a new penny.  Here he is grinning with that little smirk, and seemed to be feeling so much better.

When you have neurosurgery, you follow up with lots of hair washing.  It helps get rid of any germs that might hide there.  You can see he thoroughly enjoyed the process and the attention!

Then it was time to go.  Daddy got Isaac dressed in his own clothes.

Then he got him comfortably settled into his own personal chariot, and away we went! (After the valet parking finally found our car that they somehow misplaced!!!)

I usually don't include pictures of Isaac drooling, because I like to maintain his dignity as much as I can.  But this picture just had to be included!!!  He was so delighted to be on his way home!

And how's this one for some beautiful eye contact?!!!  It's such a delight to his eyes open and bright!

This is Mommy taking a picture of Daddy taking a picture of Isaac. 

I can't imagine why he seems a little more spoiled than usual when we get home from the hospital!!! 🙂

Today (Sunday) he seems to be feeling the aftereffects of the surgery.  He is not quite so perky, and had a total meltdown while we washed his hair and applied medications to his surgery sites.  That's to be expected, but it nearly kills both of us to upset him.  Cleanliness is vital, though, to avoid infection; so we will aggravate him only when necessary for that process.

We have been abundantly blessed.  This wonderful outcome was by no means guaranteed, and so we are counting our blessings to be home today.

Thank you for your prayers, your sweet notes of encouragement and blessing.  I was overwhelmed by the response here and on FaceBook.  We feel very loved and very blessed.

Our God has done exceedingly abundantly above all that we could have asked.  He is so good to us!

May He bless you richly,

Alesha