Things I've Been Reminded of Lately....

In the past few weeks I've been reminded of many things, both good and bad.   

I've been reminded that people are truly generous and giving in a time where money is tight for many people.  Our annual bowling fundraising event for our non-profit organization, Beau's Beautiful Blessings was proof of that.  The financial help our organization will be able to provide local Iowa families is a huge and makes me feel so good inside.  It reminds me that taking Beau's diagnosis and medical problems - which are beyond my control - and turning them into something positive like Beau's Beautiful Blessings was the best thing I could have ever done. 

I've been reminded that it's such a truly amazing thing to look down at my pregnant stomach (32 weeks) and watch it move and pop out as my baby girl moves and dances around.  I remember how amazed I was when it happened with Beau.  I wish that others could see it when it happens or that people wouldn't be weirded out by it.  I always try to get friends or co-workers or even my husband to feel my stomach as it's happening, because to me, there is nothing more showing of the miracle of God. 

I'm also reminded that not everyone is capable of being happy for someone experiencing such joy - the joy of pregnancy.  It's sad when those that choose to ignore your pregnancy and your joy are within your own family circle.  I then remind myself that they are the ones that are losing out.  Trust me I've been through miscarriage, partial molar pregnancy, a child with a lifelong diagnosis of a brain abnormality and epilepsy - I know pain, but I have NEVER, EVER made anyone else around me feel horrible for being pregnant or having a "typical' child.  I have always celebrated the blessing of pregnancy and healthy babies in others, with all friends and family.  It's just strange to me that you can be at a family event and everyone in the house ignores the fact that you are pregnant or never once asks how the baby or you are doing.  I'm not really surprised - it was that way with Beau, but a part of you wants to think that people can change. 


I've been reminded that we are extremely lucky to have the pre-school teacher we have for Beau.  Ms. Tyna is kind and caring and the most perfect special needs preschool teacher we could ask for.  Our prayers were answered this last week when the Waterloo School System granted us permission to keep Beau at the AEA 267 school, Castle Hill for one more year rather than transferring him to their school system.  Avoiding an unnecessary transition for Beau and avoiding the frustration for him of having to have another teacher learn his way of communicating, is the best thing for him.  It would have caused some serious regression and I am so thankful that the Waterloo Schools listened to our concerns and granted us such a blessing.  Another reminder, that as a parent of a special needs child, your fight never stops with getting them everything they need when it comes to their education.

Beau and Ms. Tyna

I've been reminded that you can never get too comfortable when it comes to epilepsy and seizures.  They can reappear when you least expect it.  Beau has had 2 seizures in the last 2 weeks.  They were both at sleep - his normal - small and both stopped on their own.  I remind myself that a) he hasn't had a bad seizure since October 29, 2011 b) the medications have done amazing things in slowing down all the electrical activity and allowing him to grow intellectually so much in the last several months, and c) there are others that have it so much worse when it comes to epilepsy and we should feel lucky.

I've been reminded that people can say mean and hurtful things to you.  I have come to realize that sometimes that is just the way people are wired and that in the end they are the ones that have to live with themselves for treating people so disrespectfully.  I am reminded of Mother Teresa's "Anyway" poem.

Mother Teresa's Anyway Poem

People are often unreasonable, illogical and self centered;
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Give the world the best you have, and it may never be enough;
Give the world the best you've got anyway.
You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.

I've been reminded of several things all together in this one; That God has his hand in everything, the Internet is a powerful place and that having my ACC family is such a big part of my life.  God is the only way I can explain the close friendships I've developed with other ACC families.  A few years back my father-in-law was doing research online trying to learn more about this strange diagnosis his grandson had been given.  Along the way he found a website that led him to a blog by a mother (with a son a year younger than Beau) who has complete ACC.  Through email we began our connection and though we've only been able to meet once, I feel like we could pick up exactly where we left off the next time we are lucky enough to get to see each other.  We email, read each others blogs and have the occasional phone call and I am so lucky to know her.  We have the ACC bond and I know that when I need to cry, need to celebrate, need to talk to someone that "understands", I can call her up and she will listen and she will understand.  She truly is a gift from God to me.


A few weeks back, I received an email on our Facebook Page for Beau's Beautiful Blessings.  The email came from a mom with a young son who was diagnosed with P-ACC and epilepsy (5 months old) who had found my blog on the Internet - Beau of course, having the same diagnoses.  There's that whole "Internet is a powerful place" again and "God had a hand in it".  Her questions, her fears, her emotions, they all brought me back and reminded me of the early days of Beau's diagnosis.  Wondering what he may or may not ever be capable of doing, the mourning of the life you had anticipated for your child, and the ups and downs of epilepsy.  I have to admit that I cried reading her email because I felt like I was taking a trip back to 2009 when we were diagnosed.  You see, I truly believe that like my other good ACC friend, our lives were supposed to intertwine.  I am reminded of this poem below - I have only included the first few sentences because I know that both of these amazing women will be a friend for a lifetime, even though initially we came into each others lives for a reason:

People come into your life for a reason, a season, or a lifetime. When you figure out which it is, you know exactly what to do.

When someone is in your life for a REASON, it is usually to meet a need you have expressed outwardly or inwardly. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally, or spiritually. They may seem like a godsend, and they are. They are there for the reason you need them to be. 

I am reminded that when people reach out to you, it's so important to take their hand.  They may feel that you are only helping them, but the truth is, they are doing just as much for you.  I pray daily for my new friend and her beautiful son.  I honestly KNOW the pain and the fear they are going through in the early phases of diagnosis and I also know the joys and the beauty of the journey of raising a special needs child, most specifically an ACC child with epilepsy.  It may sound like I'm tooting my own horn, but God couldn't have chosen a better mom for Beau or for that matter, a better family.  He is so lucky to be with us and have the love that he has.  He changed my life and has taken me down a path I never would have anticipated going.  It is certainly the path that fewer people take, but man.....if they only knew how beautiful and rewarding the scenery can be........

So there are the things "I've been reminded of lately".  By now you're tired of hearing the word "remind" but hey, I did warn you in the title! 

"It is God who arms me with strength and makes my way perfect." ~ Psalm 18:32

Beau's Beautiful Blessings Annual Bowling Event

This was year 3 for putting together a bowling event to raise money - the first year all the money I raised was donated to the Iowa Epilepsy Foundation and last year I began our own non-profit, 501(c)(3) organization called Beau's Beautiful Blessings.  BBB raises money for children in our area that have epilepsy, brain injuries or brain abnormalities (like Beau) that need financial assistance for medical equipment, service dogs, special needs camp scholarships, etc.  You can check us out at http://www.beausbeautifulblessings.com/. 

Each year has been a huge success, raising over $13,000 each time.  It is so amazing to me that one little boy (with a great smile and gorgeous blue eyes - not to brag) can be such an inspiration to so many.  The event is always a ton of work and maybe a little more exhausting this year b/c I am 7 months pregnant, but it is always so worth it.  Planning begins months prior and involves going to several area businesses to collect door prizes (we collected over 130 prizes this year), collecting silent auction items (which, when sold made over $1,500), getting folks to donate baked goods for the bake sale we have at the event (made over $200) and of course selling sponsorships to area business.  Plus you need to recruit the bowlers!

Here is a link to a short commercial Andy put together for our local station, KWWL, which donated the air time to air the commercial.  The little boy with Beau is a family friends child, Jude who also has brain abnormalities and epilepsy.

<iframe src="http://player.vimeo.com/video/40027695" width="500" height="281" frameborder="0" webkitAllowFullScreen mozallowfullscreen allowFullScreen></iframe>

Every year the tradition is that Beau throws the opening ball to start the event off!  It's amazing to think that 2 years ago, he couldn't walk well enough to do it, last year he was unsteady and needed our help to get him up to the lane, and this year, he carried the ball himself and set it on the alligator and this is what it looked like......

This picture makes me smile.  He had no idea that 130 people were watching him when he threw the ball.  After he threw it, he was so pleased with himself he started clapping.  Almost instantly the whole place began clapping for him.  Ever so slowly he turned around, realizing that he wasn't alone and that he had an audience!  He was still so pleased with himself - as were we, his proud parents.



The plaque we have made every year and then engrave the top individual fund raiser's name on it.  This was the second year my sister (and her husband) won the award - raising over $1,300!!



These are my 2 display boards.  One talks about Beau's Beautiful Blessings and the other is an informative board on Disorders of the Corpus Callosum I made. 



Our family :)



My cousin Kaitlyn flew in that day from Washington D.C. to be with us and support us on a very important day.  Love her so much.



The bake sale tables.



Amy and I working the Registration Table.



Just a handful of the 20 plus silent auction items.



Getting everyone checked in - my nephew Lucas in the red hat getting everyone their t-shirts.  He's such a great helper every year!



More registration!



One of the many highlights of the day was Andy's editor, Ben and his fiance Ashley showing up on their wedding day prior to their ceremony to take pictures and to celebrate Beau.  It was quite special!

 

A few of the very important women in Beau's life - his teacher Ms. Tyna (2nd in from the right) and teachers aides from his preschool.  I should also mention that all of his therapists from the hospital were there too.  Talk about some great people and talk about a lot of love for Beau.



Julia - a volunteer for the local college (SLP student) selling last years t-shirts and BBB Bracelets

 

Me with Gerald & Stephanie Sorensen (my sister and brother-in-law) presenting them with their plaque for top fund raisers. 

A list of just some of the 130 door prize winners.

Mom & Dad working the door prize area.



Bowling and having fun.



Everyone taking a look at the silent auction offerings.



Bowling fun!



Serving up the pizza pizza!



Signing the scrapbook pages.

This is what exhaustion looks like!  Trust me mama felt the same way!  After all it's hard work being such a little celebrity! 

I can't thank our friends, family, sponsors, businesses, strangers, volunteers, etc. enough.  It was an amazing day and it reminds me that one little boy can make a huge difference.  Take the trials and tribulations that life throws at you and turn them into something positive and inspiring and worthwhile.  We are so blessed to have Beau as our son. 

Happy Birthday Beau

Four years ago today, the most amazing little man entered my life and I have forever been blessed and changed (for the better) as a result.  Beau Hunter Weichers was born on February 7, 2008 weighing in at 8 lbs 12.8 oz and was 20.5 inches long.  Although he had a very scary start and spent a week in the NICU, he is strong today and we love him so much.  I am lucky to be the mother to this very special child.  I love you Beau Beau.

Wintertime Fun at School

Beau absolutely loves going to school and he has some of the best providers we could ask for.  Last week they were learning about snow and enjoyed a morning of sledding outside of the school.  As you can see, Beau loved it!


Beau & his best buddy Peyton ready for sledding!



This mitten is so silly!

Ready to go down the hill.



Beau with his teacher Ms. Tyna




My favorite picture - snow fight!!

 Absolutely love seeing how happy he is with his friends at school.  We are lucky!

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 :)

Neurology Visit

So on Wednesday of last week we had our routine visit with our fantastic neurologist, Dr. Joshi.  We were actually excited for this appointment because of how well Beau had been doing.  After all, it had been since the end of October that he'd had a seizure and his balance and overall brain clarity seemed to be awesome!  The doctor, also excited, was cautious and told us that she didn't want to be a downer, but eventually the seizures would break through again.  The Depakote was doing it's job though and she figured it might buy us a few months of time.  Since his brain has seemed "clearer" (if that makes sense) she figured, as well as we did, that the electrical impulses that were constantly firing in the brain on the last EEG, must be slowing down thanks to the Depakote.  After all, wouldn't you be able to think clearer if your brain wasn't firing every second!  Because of that, she ordered an overnight EEG to get a comparison to his EEG he had in April of this year.  This test is scheduled for Monday and Tuesday of next week in Iowa City.  No medication changes were made and she discussed that we still have room to increase the Depakote if needed or there is a drug called Lamictal that she could slowly add if needed.  He is already on Kepra, so nothing would change with that. 

The discussion was also had about the possibility of brain surgery which she likes to do before the age of 5 on children because of the brain's incredible ability to "re-wire" itself, so to speak.  Dr. Joshi explained to us the complexity of Beau's case.  A few more drugs would need to be exhausted - proving that they are no help for Beau.  The abnormality that she sees on PET scan as well as activity on his EEG, shows that the abnormality is located on the left side of the frontal portion of the brain, near the midline.  She has always noted that his right leg is weaker and doesn't work as well as Beau's left leg.  This would make sense since the abnormality or damaged area of the brain is on the left side = right sided problems.  The complexity happens when, we as parents describe how a majority of Beau's seizures have affected his left side of his body - meaning the trigger came from the right side of the brain.  Many of his early seizures in fact would involve the left side, leg and arm, and for at least 2 hours after the seizure, he would be paralyzed on the left side.  Because of this, Dr. Joshi is thinking that because the abnormality is so close to the midline, it may be "bouncing" back and forth, resulting in both sides being affected.  To properly determine if surgery is an option for Beau, they would have to place EEG electrodes subdural.  That involves the horrible process of opening up the brain and placing the electrodes directly on the brain itself - which is much more specific than a regular EEG.  It carries it's own risks of course and the whole process makes me want to vomit.  Andy and I both just cringed when she spoke about it.  If the test determined there was activity bouncing back and forth it wouldn't be worth the risk to do surgery.  You certainly can't take out areas on both sides of the brain.  At this point in time I chose not to think any more about it - thinking that "we'll cross that bridge when we get there". 

As our luck would have it, that very same night (the day of our appointment) Beau suffered a small seizure after falling asleep.  This seizure affected the right side of his body and was short - only 25 seconds in length.  His evening dose of Depakote was then increased and since then we have been seizure free.  Since he's been seizure free, he will still have his overnight EEG next week.  He has been very moody though since increasing the dose, so I'm hoping that once his system adjusts, the moodiness will drop. 

Time will tell how his body is going to handle the Depakote.  I just wish this poor kid could catch a break.  I guess we need to be grateful that he had over a month without seizure activity and what an awesome month it was for Beau!