Information Overload

Yesterday was Beau's neurology visit at the University of Iowa Children's Specialty Clinic.  It was such a cold day with sub-zero temperatures, but the sun was shining so that seemed to help!  I knew it would be an appointment with lots of questions and tons of information, but I didn't realize how much information I would be receiving.  I was so exhausted by the time I got home last night and I felt like it was information overload.

Here's what needed to be addressed at the appointment yesterday:

1) Beau is a very sweet and very loving little boy.  Many of you may (or may not) be surprised to know that Beau can throw some of the nastiest fits; screaming, crying, hitting himself in the head, throwing himself down, throwing items, etc.  Most of the time I am the lucky recipient of seeing these fits - as well as anyone else out in public when he decides to throw himself down in the middle of the store (making taking him to public places sometimes very difficult, especially if I have Delaney as well).  He does it some for Andy as well.  We aren't sure many times what is triggering the outburst.  Is it because he can't talk - literally stuck inside his own body?  Is it an over-reaction caused by the drugs that he is taking?  We have tried all methods to help calm him down, most times to no avail.  I love my little boy so much, but a family can only take so many nights of angry, frustrated outbursts.  Beau has been on the drug Keppra for several years now and I was warned of "Keppra rage" early on and also remembered families telling me their child had to be taken off of Keppra due to the tantrums and outbursts especially around the age of 5 (Beau is almost 6).  Beau is maxed out on 2 drugs currently - Keppra and Depakote - and they have been a good combination for him and have kept his seizures under fairly good control, which is what concerned me about even suggesting moving to another drug.  He has about 2 episodes per month where he wakes up screaming in the middle of the night and when I try to get him to walk, his right leg doesn't work.  This indicates to Dr. Joshi that he had a small seizure in his sleep and the pain from the muscle tightness wakes him up and then he experiences Todd's Paralysis.  They also indicate that his seizures aren't under COMPLETE control.  Those that are close to me know that my nights are not always calming and relaxing and full of sleep.  Dr. Joshi fully feels that Keppra is the cause for the behavior outbursts and says she has seen it many times.  Our next step now is to slowly start putting Beau on Lamictal with his Depakote.  Lamictal has to be introduced extremely slow and will take almost 8 weeks to get up to his dose.  Once that drug has worked its way into his body, the Keppra will be weaned away.  I really liked when Dr. Joshi reassured me and said, "Amanda, you have to do what is right for the whole family, not just for Beau".  Right now, I want my old Beau back that doesn't get so angry. 

2) Beau has always drooled a lot but lately it seems even more excessive, especially when he is concentrating or focusing hard on something.  This time of year it chaps his face and he can go through at least 2 shirts if not more a day.  We have tried scopolamine patches previously and he would pull them off no sooner than I got them on him.  She had mentioned over a year ago trying a medication to help dry him up but I kept saying no more medicine.  Yesterday I said, let's try it.  So, he has been prescribed glycopyrrolate to help control the excessive drooling.

3) Dr. Joshi has been wanting an MRI for about 6 months now.  She forgot to have it scheduled in October, so now she is wanting an MRI as soon as possible to compare to his MRI from 2009.  It will be a sedated MRI and I just learned it will be done on December 30th.  Praying that the sedation goes smoothly.  The last time Beau was sedated for a test, he went into a seizure. 

4)  Dr. Joshi brought up the topic of VNS during this visit.  VNS stands for Vagal Nerve Stimulation.  Here is a definition from epilepsy.com:

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.

She had also mentioned it at his last visit but we decided to just keep pushing forward with what we were currently doing.  Yesterday she made it clear that her opinion is that we need to have the VNS implanted.   She states that Beau will always require medications to keep his epilepsy under control and we are starting to run out of options.  Rather than waiting until we are really at the end of the medication list, she wants us to start the process now.  She told me that there is a 50/50 shot that it will work for Beau and control his seizures.  She stated that that statistic was better than any drug since it can never be predicted how the body will react to the drug.  If the device works to stop the small episodes, we could look at slowly weaning him off of drugs or maybe having him on a lower dosage or lessor amount of medication.  The VNS would do the work of the drugs. 

Like any surgery, there are risks, but not like the risks of brain surgery.  We are talking very minimal risks.  She doesn't feel that Beau would necessarily be a good candidate for brain surgery to eliminate the seizures because the trigger spot seems to be located right near mid-line and the activity is then on both sides opposed to just one side.  With involvement on both sides, you can't do brain surgery.  To be honest - it's almost a relief that he isn't a candidate because I don't think Andy or I could agree to it.  This is her answer to helping Beau and being pro-active.  She knows we are running out of options with drugs and she wants to stay one step ahead.  I trust this woman completely.  She is referring us to a neurosurgeon there at the U of I and they will get the ball rolling for the implementation of a VNS. 

So there are the highlights of yesterday's visit.  He also had his blood drawn to check his levels and as always, he was tougher than I am when it comes to blood draws.  Life is going to be throwing him some changes the next couple of months and I pray for guidance and peace as we move forward.  Just another little bump in the road to make his life that much better and more manageable.  He's my little superman, so I know he can do this!

Milestone charts....you can go fly a kite......

Milestones and milestone charts/graphs etc. have been one of the things I can honestly say I truly dislike.  Most parents I'm sure might disagree because, hey, they have typical children and it gives them something to brag about on Facebook or in their Christmas cards! "My son is 8 months old and he is already walking, way ahead of what the books say! Pretty sure he'll graduate at the top of his class!"  OK, so that's an exaggeration but we know everybody does it.  We all want to compare our kids to other people's kids - it's human nature. 

*Here is a side by side of Beau and Delaney at 9 months of age.  Notice that Beau isn't able to stand, even with assistance and even while sitting on the floor, you will notice I have him surrounded by pillows because he would fall over so often.  He also drooled uncontrollably (still does) and would soak through several bibs a day.  On the right, you see Delaney up and walking using a walking toy.*

Having our first born child have an intellectual disability is what made me dislike those stupid charts so much.  At our daughter's 9 month appointment recently, the doctor went through the standard list of the "is she" questions.  Is she crawling, is she pulling herself up, is she babbling, is she holding her own bottle, is she playing pattie cake, etc.  As he was asking me those questions, all I could think about was when Beau was that same age and those questions were being asked of me.  I remember how horrible and panicked I felt when I kept saying, no he's not doing that.  Keep in mind that at that point in time we didn't have a diagnosis.  His diagnosis wasn't made until he was 17 months old.  I remember dreading those appointments because I knew he wasn't where he should be and yet the doctors kept telling me it would be OK - he was probably behind because a)boys tend to be slower and b)he was quite chunky making sitting up/rolling/crawling difficult.  At the end of Delaney's appointment the doctor handed me the pink sheet with milestones to expect at 9 months.  I kept the sheet for her baby book because it has Delaney's measurements on it, but I didn't read what she should be doing at this point in time.  I have a general idea because of the questions he asked me but honestly don't care. Delaney is doing what Delaney is designed to do at this point in time.  She is on her own schedule.

Two days after that appointment we went to Iowa City for Beau's neurology appointment.  Upon coming on I opened the mail and in it was coupons from Enfamil.  On the back of the coupon packet was this:

Once again, something that is telling you what your baby "should" be doing at this age.  It seems like the reminders are everywhere.  Not a bad thing when you have a "typical" child, but frustrating and disheartening when you have a special needs child - especially when it's your first born. 

Andy and I are constantly amazed when Delaney is able to do something new and at her ability to learn something so quickly.  I think it's safe to say that we appreciate these accomplishments even more than the "average" parent.  We realize how amazing these moments are and how difficult they can be for some children.  I think it's a little hard for us to see how quickly she is surpassing Beau.  It becomes obvious to us now how far behind he really was at this point in time. 

I guess I just want other parents to know that it's OK to throw out those charts and let your child develop and grow at the rate God intended them to.  You will enjoy each amazing milestone that much more and won't take those moments for granted. 

Happy 5th Birthday Beau

Five years ago today, on Thursday February 7th, 2008, Beau Hunter Weichers entered our life and we were forever changed.  The lessons learned from raising a special needs child are infinite and they can't be explained necessarily - you just have to live it to "get it".  Today I celebrate 5 years of joy with Beau.  So many people have learned from Beau and I hope he continues to teach others about the beauty of being different, the ability to accept others for those differences, how to love unconditionally and how to say so much without the ability to say a word.  Happy Birthday to my angel and my hero.

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.