Take me off the list please......

Believe me, I have my moments like so many others dealing with something difficult in their life.  In my case, it's raising a special needs child.  Shortly after Beau's diagnosis I was made aware of a ListServ, mass emailing group for parents, those diagnosed with and family members dealing with ACC.  I thought that it might be good to join to see what others were going through and maybe provide me with a glimpse of what the future might hold (that was also a crazy thought since all of these children are so different).  That was my thinking early on in Beau's diagnosis.  As with anything like a life changing diagnosis, a death, a trauma, etc. there are stages of grieving.  Everyone approaches those stages at different times and there is no set timetable that you are supposed to go through each stage.  I remember those early stages and I remember the other traumas that we were going through at that time that compounded the emotions; a miscarriage from a partial molar pregnancy, possible uterine cancer, bankruptcy, losing our house, etc.  Life was anything but fair that year and yes I realize some of it was our own fault but it still was rough.   

There have been many times here lately where I have wondered if there is something wrong with me.  I say that because I had been reading several of the posts on the ListServ (and not reading several others).  There are soooo many emails that go through the ListServ and if I see certain subject lines I would just delete them.  Let me preface what I'm about to say with this: I understand the process that we are all going through, I understand that some parents are dealing with a lot more problems than we deal with, with Beau, I understand the daily struggles of dealing with a special needs child, I understand that we have to make decisions that aren't fun, I understand that we know our way around specialty hospitals and know more doctors and specialists than we care to know, I understand we are scared about what the future holds, I understand it completely SUCKS some days.............BUT there comes a time where you need to move past the self pity and just deal with it.  I know that probably sounds heartless but I can say it because I'm on the inside; I'm not some outsider looking in. 

Last week I requested to be taken off the ListServ.  I couldn't hear/see any more of the negativity and pity parties, especially from folks that have children that were diagnosed 10 plus years ago.  I remind myself everyday that there are always others that have it worse - including us ACC parents.  Believe it or not, there are other families with bigger struggles. There are families that have children dying from cancer - I'd say we're lucky in that respect.  It's all about perspective and putting things into it.  We all have our days and I know that there will be more times along the path with Beau that I will cry at night for what he is going through and because we didn't get to raise a "typical" son, BUT I always have to come back to reality and know that I am better off today for God's wonderful gift of Beau.  And I realize that God entrusted me with Beau's care for a very special reason.  I decided early on that I couldn't change what was happening with Beau.  I took those tears and poor me attitude and transformed it into Beau's Beautiful Blessings, our non-profit that raises money for kids in the state of Iowa that have brain abnormalities, brain injuries and/or epilepsy.  I received a call yesterday from a dog trainer that is training a service dog for a little boy that has P-ACC, like Beau, and we are the organization paying for the dog.  Herky, the dog, is doing amazing with his training and should be "home" for Christmas with this wonderful little boy who really needs this dog.  WE, Beau's Beautiful Blessings and its friends and donors, made that possible by turning negativity and self pity into something so incredible.  It's about being proactive and giving back and being grateful for all that you DO have.

I've rambled on and made my controversial opinion known so I'll stop for today.  I have learned that it is OK to be happy and not be sad about your child's life changing diagnosis.  Please don't ge me wrong I still have my days where I get down and that is to be expected, I'm just saying I don't cry and complain every day because of the cards we have been dealt!  Go out, educate and create awareness for these kids! 

My happy boy Beau with daddy.

Neurology Visit September 2012

Due to my crazy life as a working mom with a 3 month old and a 4 1/2 year old, blogging takes a back seat!  BUT.....I wanted to update everyone on Beau's latest visit to his amazing neurologist, Dr. Joshi. 

For the most part, Beau is doing well, we see little improvements here and there.  To others raising "typical" children these improvements wouldn't even be noticed, but to us, they are huge accomplishments.  Beau is adding more sign language to his vocabulary and a lot of it, he is creating on his own.   We are working on teaching him the signs for"I want" and "I love" and then letting him fill in the blank at the end. He is currently on the max amount of Keppra and Depakote for his weight.  If the seizures break through, or should I say, WHEN they break through, the next step is to add lamictal and wean off of Keppra, keeping him on the Depakote.  After that there is another drug she has up her sleeve which he would be placed on.  All in all, Dr. Joshi said she doesn't want to see a plateau; she wants to continue to see improvements.

Here is what Dr. Joshi tells us:  According to the "criteria" (not sure whose criteria - I suppose the University of Iowa) Beau is a candidate for the brain/grid mapping procedure to determine if he could have surgery to attempt to eliminate the seizures. Subdural grid electrodes would be placed directly on the brain.  Beau has had the inpatient EEG's and the PET scan (while being placed under anesthesia he had a seizure).  The exact location of his seizures can't be determined with 100% certainty from those tests.  They are showing really close to midline and that could indicate the activity traveling back and forth between both halves of the brain.  That would mean Beau wouldn't be a surgical candidate to have the abnormal section removed.  She is also concerned with the fact that the area she thinks may be causing the seizures is located just to the left of midline extremely close to the function of his right leg.  Remove a section in that area and if you go too far one way or the other he looses function in his right leg.  In order to determine whether surgery is an option, he would have to have "surgery" to have the grid electrodes placed directly on his brain.  Google the pictures, think about it and know it seems like a very scary thing to see your child go through.   His head would then be wrapped after the procedure and he would remain in the PICU until (after being removed from his medications) he had a seizure.  Having the seizure would give the doctors the answers they need.  If it is in an area that they don't feel can be removed, then he would be taken back to surgery, sewn back up and a VNS placed.  A VNS is a vagal nerve stimulator.  From www.epilepsy.com I found the following explanation of VNS:

Vagus nerve stimulation (VNS) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.
The VNS device is sometimes referred to as a "pacemaker for the brain." It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck. The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.

IF it turned out Beau was a brain surgery candidate, he would be taken to the OR, the grids removed, the "bad" spot of the brain removed and then he would be closed back up.  The hope would be the seizures would stop and that his right leg function would be maintained.

Here is my question - why the hell do Andy and I have to even think about this?  Why should I have to make such a life changing decision for someone else?  It feels almost as if you are playing God by choosing or not choosing grid mapping/surgery etc.  Although Andy AND I really aren't thinking about it - Andy refuses to think about it and understandably so.  I keep pushing it to the back of my mind as well.  Dr. Joshi is ready to do this at any time because she knows, and so do we, that eventually we are going to run out of drug options for Beau.  She assures me that his personality would not be affected if that particular portion of the brain had to be removed.  But, what no one can assure me is that any of these procedures would go off without a hitch.  So much to think about but we will continue to let this possibility sit at the back of our minds for right now, focusing on the here and now and the incredible little boy we affectionately refer to as Beau Beau. 

Happy

Even with everything that Beau goes through he is the happiest child I have ever met.  He can't talk so his expressions and eyes are his words and they speak volumes.

Taking a fall....

Here's the result of poor balance and frequent falls - a big ole' black eye!  Poor boy!

Beau's First Day of Preschool for 2012 - August 17th

My handsome young man on his first day of preschool for this school year.  As you can see he was happy to return to his same teacher and same school once again this year.......Pretty darn cute if I do say so myself!

To get him to smile and ham it up for the camera I had to hold a mirror in front of me.  For those of you that know Beau you know that he loves mirrors and is constantly watching himself do things in front of mirrors.  He also likes to check out his butt in the mirror - not even kidding - so you see him checking out his behind and his new backpack.  His expressions are priceless!

She cried..........

Here I am on Wednesday July 4th, 2012 - Independence Day!  I am 39 weeks and 5 days along in this picture and am smiling in between contractions.  Andy and Beau and I had gone down to Hudson for dinner with my parents and during the drive I was pretty sure I was having fairly consistent contractions, but hey, I wasn't going to miss my mom's homemade strawberry pie!

After dinner I got out of doing dishes by sharing with everyone that I was having contractions!  I called the hospital and we got there around 6:30 PM and so it began......

Yep - that's pain - thanks mom for this flattering shot!

My labor nurse Tina charting away!

We were hoping for a 4th of July firecracker baby!  We figured for the first few years at least we would let her believe the fireworks were for her in honor of her birthday.  I was going to have to labor quite fast if we were to get her to arrive before midnight!  I was finally officially admitted by 7:45 that evening and my mom and dad arrived at the hospital to be an extra support system.



Things were going well.  They were getting strong doses of antibiotics in me (to help with the strep B), the fluids were being pushed into me (to help with my low blood pressure and enable me to get the epidural) and labor was progressing well.  Once I got the epidural I felt great and could have kissed the cute little old Chinese anesthesiologist. 

As midnight approached and I was at 9 cm, 100% effaced and my water had yet to break, we knew we wouldn't have our 4th of July firecracker.  The four of us, dad, mom, Andy and I decided since we now knew she'd be born on July 5th we would place bets about her weight.  My guess was 8 lbs 15 oz, Andy's guess, 8 lbs 2 oz, grandma's guess was 9 lbs 3 oz and grandpas guess was 10 lbs 2 oz.  I immediately told my dad to shut his mouth for saying such a large baby and we all had a good laugh at him and his dumb guess!  How would I deliver such a big girl?  Plus the doctor had guessed that baby girl would weigh around 8 lbs.  I had gained a total of 30 lbs with this pregnancy and hadn't gained any weight the last 3 weeks - she couldn't be too big. 

Shortly after midnight, Tina checked me and during her check the water broke.  Panic started to set in for me as I had flashbacks to Beau's delivery and the meconium.  Tina told me the fluid was clear - blessing!  I told her to get the doctor there quick because I go fast.  I quickly we to 10 cm and was ready to push.  Doc got there and at around 12:45 AM I began to push.  Three contractions and 9 pushes later, at 12:58 AM, Delaney Grace Weichers was born.

And she cried.

It was the most beautiful sound I had ever heard.  Doc's face was quite memorable as he said, "Look at those cheeks", "wow, look at those chins" and then "wow, she's a big baby!".  The nurses response was a quick, "Doc she's huge!".  I laughed and smiled as they laid my crying baby on my chest - something I'd never gotten to experience with Beau.

Pure joy and relief - God's miracle.

Now you understand why Doc talked about her cheeks and chins!

I held her and kissed her and said my thank you to God for a safe delivery and a crying baby.  She looked healthy to me.  Everyone just kept commenting about her size - at the time I just thought she looked healthy, looking back at the pictures - well.....she looks huge!  Next came the moment of truth.....the scale....who would win the bet???

Guessing her weight right on the money - my dad, Delaney's grandpa Ron!  We had teased him and said there was NO WAY I would have that big of a baby.  As they weighed her and said her weight my parents were standing outside the door.  From a distance I hear dad say very matter of fact, "I told you so." Delaney Grace Weichers weighed in at 10 lbs 2 oz and was 21 1/2 inches long.  And no, I didn't have gestational diabetes - she was just big.  When dad and mom came back into the room we all looked at dad and said, "How did you know she would be that big and how did you guess dead on?!"  My father, a retired carpenter gave us a response that was priceless, "I've seen a lot of pregnant women."  What the???  We laughed so hard.  After all these years of doing construction projects on homes who knew you were moonlighting as an OBGYN. 

I had requested from our pediatrician that once Delaney was born we wanted to have an ultrasound done of her head while we were still in the hospital.  I didn't want any surprises down the road.  If she was missing her corpus callosum I wanted to know right away.  They performed the ultrasound and I saw the prettiest brain I'd ever seen with the most complete corpus callosum - a corpus callosum that I'd only seen in books and in internet pictures.  It was all there - praise God. 

The doctors did notice a heart murmur so they did an echo and determined she has a small VSD.  The cardiologist said that it shouldn't be an issue for her and that hopefully by age 5, it will close itself up. 

Big brother Beau was so happy to meet his baby sister.  He is, as I had known he would be, an amazing big brother.  My very special and loving little boy will be Ms. Delaney's best friend and protector.  Below is their first meeting.

I think this picture says it all.  How could I not feel blessed and lucky to have two amazing little beings in my life? 

It has been exactly 8 weeks ago that Delaney entered our family and I am finally feeling like we have some sort of a pattern and new "normal" happening.  Beau continues to be such a wonderful big brother and while we've had some trying days, we are adjusting well and loving our family of four.



Delaney - 8 weeks old

 Above is a recent picture of Delaney - 8 weeks old today.  She now weighs 14 lbs 2 oz and is 24 1/4 inches long. 

Beau - The Iowa Boy (July 3, 2012)

So I'm a little behind but I wanted to go back and share a few things.....

Beau has shown that he is a true Iowa boy.  On July 3, 2012 Beau and I had a nice evening together eating some delicious Iowa sweet corn.  We were having a mommy/son date night as the due date of his baby sister approached.  This is quite possibly one of my favorite pictures of Beau.  His big blue eyes and long dark eyelashes get me every time!