The Letter "A"

This morning I had one of those "moments".  One of those moments you have when you are raising a special needs child and they do something you didn't realize they could do.  All of the credit and thanks for this "moment" go to Ms. Tyna, his preschool teacher, as I know she is the one that made this moment possible. 

This morning, I had Beau sitting on the potty, hoping that maybe, just maybe he would go (he didn't) and while he sat on the potty he was looking through a football book that I had made for him.  It's a 3 ring binder that holds football cards and pages from Sports Illustrated when they did a special college football edition.  I took the magazine apart and put them in clear sleeves and he enjoys flipping through the pictures.  Anyway.....the other day Andy had mentioned that he thought maybe Beau could identify some letters.  I didn't really think that was possible but decided I would test the theory this morning while he was looking through his book and sitting on the potty.  We came to a page in his book that had PLAYOFF in big letters across both pages.  I said to Beau, "Please point to the letter A".  He didn't hesitate and immediately pointed to the letter A.  Stunned I sat there wondering if it was a fluke.  Turning to a different page I asked him again - same response.  I sat back on my legs and smiled and realized we just had a "moment".  An "ah ha" moment that truly made me appreciate what Beau's teachers have done for him.  It may be he recognized the letter A because it's a letter in his name and they work a lot on his name, but still he KNEW THE LETTER "A"!! Of course, I was too shocked to try out more letters, because just having him recognize that one letter, felt like I had just witnessed him complete a marathon.  It also made me feel a little bit horrible because I've never worked on letters with him because I'll admit, I felt it was way too over his head.  I should know better because every day this little man is proving that inside that head of his is so much knowledge begging to come out - if only the words would work. 

I am proud of my sweet Beau today.  I have learned my lesson and now we will definitely be working on our letters at home.  Shame on me for not realizing!  Today is a great day and is worth a celebration!  Thank you to the special education teachers that do amazing things for these very special children.  Ms. Tyna - you have done amazing things with Beau over the last year and a half and our family is so grateful..

This post is brought to you by the letter "A" - for awesome!

A Trip to Adventureland

On September 1st we made the quick drive to Adventureland in Altoona, Iowa.  We loaded up the van with our friends and headed to Altoona.  Delaney sat this one out and went to spend the day with grandma and grandpa DeWitt.  Lucky little man Beau got his mommy and daddy all to himself that day!  It was so much fun and watching Beau smile non-stop that day was a blessing.  The other blessing - spending the day with another great family!

In the van and ready to roll!

Andy, Beau and Amanda

Beau and daddy riding the train.  Always a favorite. 

Anticipating a fun ride on the raging river!

Beau loving his ride on the raging river.



What a great day and one that won't soon be forgotten.  It definitely needs to be an annual event.  I can't think of a better way to celebrate these two amazing boys every year!

Delaney's Baptism - Beau Steals the Show (and a few hearts)

Beau's beautiful little sister Delaney was baptized on Sunday September 9th.  It was a gorgeous day out with plenty of sunshine and Delaney did great.  Probably my favorite part of the day was Beau going up front for the children's part of the service.  This was something completely new to Mr. Beau and as a result it was quite fun to see how he reacted to all of it.  God bless his cousin Lexi for putting up with him (as you'll see in some of the pictures from that day).

Trisha baptizing Delaney Grace.

Trisha doing the children's part of the service.  Watch the pictures of Beau - he's full of mischief!

Not so sure about this.......

Ok, this may not be so bad.....

This is actually pretty fun......

Hi family!!!!

Looking full of it!!!

And let's get Lexi's hair......

And finally he decides to stand up and smile at everyone.  Love it - never a dull moment with Beau Beau.

Delaney with her Godparents, Uncle Jason and Aunt Gabbi

Our Family



Beau loves his baby sister.

It was a great day and Beau definitely stole the show that morning.  Such a sweet, sweet boy.  Love these kids!

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!

Mixed emotions.....

Any day now our second child is due to arrive and I am filled with so many emotions.  Obviously I am excited to meet my daughter but I have so many other emotions that are taking over.  Having had such a bad/scary experience with the birth of Beau, I am terrified of the "what ifs" with this upcoming delivery.  I have the strep "B" again this time and there is no way to know how much of what occurred with Beau at delivery was related to the strep "B" I had then as well, or the meconium or the brain abnormality.  When he came out he wasn't breathing, they had to perform CPR on him and he spent a week in the NICU, having a spinal tap and many other pokes and prods.  The doctor has stressed the importance of me getting to the hospital right away so that they can give me as many doses of IV antibiotics as possible prior to the baby being born.  I just know that I can't go through what we witnessed with Beau again.  You're supposed to hear your child cry and scream and kick like crazy when they come out - you aren't supposed to hear nothing, or only hear the sound of alarms going off. 

I am also concerned about her overall health.  What if she has the same problem as Beau?  It's crazy thoughts I know but it seems like a perfectly normal concern to me.  Of course it wouldn't change anything about how much we love her, but it still terrifies me.  We have already spoken with the pediatrician and they have agreed to order an ultrasound of her head once she arrives so that we can see her beautiful brain and know that everything is all there and complete.  We'd prefer not to have any surprises this time around. 

I guess I'm writing this because it makes me feel better to admit that I am terrified and need as many prayers as I can get.  I know I've been praying a lot here lately and I can only hope the prayers have been heard. 

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