A Christmas Surprise.....

For those of you who know our family, Beau is our only child.  For those of you who may know us a little more personally, you also know that when Beau was 15 months old (and just prior to his diagnosis of P-ACC and epilepsy), we were pregnant with our second child.  We lost that child due to miscarriage as a part of a partial molar pregnancy.  It turned out to be a blessing in disguise as just a few short months after the miscarriage Beau's health changed drastically and it set us on the course we're on today. 

Beau will be 4 years old next month and over the last year, after long discussions, genetic testing, emotional growth and knowing that Beau was at a good point, we decided that we were ready to start trying again for a sibling for Mr. Beau.  It was a very scary venture for us as we had one child with serious health and developmental issues and the bizarre partial molar pregnancy/miscarriage/cancer scare after that.  We put our faith in God's hands and here is what Beau announced at Christmas to our friends and family......

The front of Beau's shirt says, "Guess what Santa is bringing me for Christmas?"

And on the back it says, "A new baby brother or sister in July."

We are pleased to share that around July 4th, 2012, we will be adding another member to our small family.  We are currently 16 weeks pregnant and assuming that everything goes well we will be welcoming a new baby this summer.  Next month will be our 20 week ultrasound and of course we'll be able to find out the sex of the baby.  I'm convinced it's a girl and Andy is convinced it's a boy - either way, we want one thing - a healthy child.  With Beau, they never saw anything unusual on his 20 week ultrasound and we never found out about his P-ACC until he was 17 months old.  The doctors have said we could have a level 2 ultrasound on this pregnancy but we have decided to do the standard ultrasound.  What happened with Beau, as far as all the professionals can tell, was a fluke.  Other people may have other opinions about us choosing not to have a level 2 ultrasound, but they can keep those opinions to themselves as we want this pregnancy to be as worry free as possible. 

I would be lying if I said I wasn't afraid during this pregnancy.  At the beginning it was the fear that it was another partial molar pregnancy and then it was the fear of miscarriage, which I still have a fear of.  After that I worry about the delivery and think of how rough Beau's delivery was.  It wasn't rough on me physically, but the emotional toll of seeing your new baby unresponsive and having CPR performed on him is something people should never see.  I want this baby to come out screaming and crying and I want to be able to hold him/her and not have them rushed to the NICU to spend a week.  I think that before I was ever pregnant - before Beau - I took for granted how amazing pregnancy is, how amazing the whole process is when a child actually comes out healthy.  To me, it's amazing and a miracle when everything actually goes right.  Assuming all of this all goes well, I'll still carry that fear that my new child may have something wrong.  Obviously with Beau we didn't know right away.  There may be tests that we pursue after the delivery for this baby just to ease our minds.  In the meantime though, I want to stay positive during this pregnancy and not worry about the what-ifs because that certainly doesn't help me or the baby growing inside of me. 

A good friend of mine recently went through pregnancy and delivery of a beautiful child after having a child with ACC.  Speaking with her made me realize how "normal" my feelings are and how life is never quite the same after having a special needs child.  Don't get me wrong, these ACC children have changed our lives in ways we never imagined and made us better people because of it.  It just makes you more aware of the things that can happen and makes you a bit more guarded.  I'm grateful everyday for my ACC family and the love and support they give, as they are truly the only ones that "understand".  Without my above-mentioned friend, I don't know how I'd have gone through some of the experiences we've been through in the last few years. 

Now that I've gone off on a tangent, I will get back to the news at hand - a new baby Weichers!  I ask for prayers my friends as we go through this pregnancy.  Thank you for sharing in our joy.  This child is going to have the most AMAZING older brother and will grow up knowing compassion and understanding for those that may be just a little different.  THIS will be one lucky younger brother/sister. 

December 19th & 20th EEG

On Monday December 19th we headed down to Iowa City to the University for another overnight video EEG.  At our neurology visit earlier in the month, the doctor had stated that she wanted to do an EEG as soon as possible to see if the all of our theories were correct regarding the addition of Depakote and the decrease in abnormal electrical activity in the brain.  We all figured this had to be the case because he had been seizure free for nearly 6 weeks, his walking was better, he seemed to be learning new things (i.e. what does a cow say - to which he would respond appropriately with "moo") and he just seemed like his head was "clearer". 

The whole set up of the EEG and getting hooked to the electrodes is so stressful for all and then being stuck in a small room attached to wires and not being able to leave.........horrible for a 3 year old.  Especially horrible when he could see all the activity in the halls and he also knew there was a wagon and a play room not too far away and he really wanted to be there and not in his room.  The last EEG we had earlier in the year was a 3 day event, so I really shouldn't even complain about a mere 24 hours.  We survived and the next morning I was surprised when our own doctor showed up to our room - as Tuesdays and Thursdays are normally her days off to spend with her own young children.  She was pretty excited to come and talk to me and for good reason. 

She took me into the EEG room and pulled up the EEG from April and then placed it next to the new one.  I have no clue how to read an EEG, but even to my amateur eye, I could tell there was a difference.  The theory was correct.  As Dr. Joshi put it, "This EEG is 100% better than his last EEG".  It obviously wasn't a perfect EEG, but the Depakote was clearly making a big difference in Beau's abnormal electrical brain activity.  His EEG in April, the doctor had to look hard to find any normal electrical activity and with this new EEG she had to look hard to find the abnormal electrical activity.  It was what I like to call our Christmas miracle.  Granted, we know this won't last forever, but it's so nice that the poor kid gets a break for a while. 

The doctor said that at our April 2012 appointment she will discuss surgery in greater detail.  She said that she would have to have Beau have another PET Scan (this one NOT post-ictal like his last one) and he would have to go to Chicago for a MEG Scan (apparently the closest location to have this machine).  From there, if the team of doctors and specialists thought it should go further, they would do the internal EEG (they actually open up the brain and place the electrodes directly on the brain).  They have to determine if they can specifically say the abnormal activity is only coming from one side of the brain and so far we have some conflicting information.  Deep down, I don't believe he will be a surgical candidate.  The tests (so far), all show an abnormality on the left frontal side of the brain close to the midline.  This would indicate that any time he had a seizure it would be his right side that would be affected.  Yes, this is the case - some of the time.  But, for the first year of seizures with Beau, he would be affected on his left side and would be paralyzed on his left side for 2 hours after a seizure.  This is where things conflict.  This makes the doctor believe that the activity is so close to the midline that it is bouncing back and forth, which would mean, she wouldn't do surgery.  She still seems pretty convinced that it's only on the left side of the brain, but I'm not - too many seizures that have affected his left side of the body - indicating a point of origin on the right side of the brain. Her other thought is that if brain surgery isn't an option, implanting an VNS in his chest might be. 

Here is what I know for now: the abnormal acitivity has slowed down drastically, he's happy and loving and he's not having seizures right now.  Surgery may never be an option for Beau - time will tell.  For right now, we're grateful for the way things are :)