Our "Beau"tiful Blessing

Tuesday, August 2, 2016

School Registration Time and the Unlikely Request....

It's hard to believe that summer is coming to an end and that school will be starting in just a few weeks.  Today was registration for Beau.  It came with some anxiety for me.  Beau's special education teacher since Kindergarten has moved to another school within the district and I wanted to find out more about his new teacher.  In addition, I was anxious about who is regular 3rd grade teacher would be. 

I had heard stories last year from Beau's para Ms. Erin about a teacher that Beau saw everyday in the hall and had made a connection with.  I didn't remember her name or what grade she taught however I knew they had formed a connection.  About 2 weeks ago Beau and I were walking into Wal-Mart when a woman yelled "Hi Beau" and walked over to us.  He lit up and said "hi, hi, hi" and smiled so big.  These occurrences aren't rare in our world.  If you ever take Beau anywhere expect that someone will come up and say, "Hi Beau", "How are you Beau", etc.  We rarely know who these people are.  I'm fairly certain he should run for mayor or maybe even president - he does love kissing babies!  I asked this woman if she knew Beau from school and she said yes.  She said that her name was Ms. Foss, a 3rd grade teacher at his school.  She explained to me that she and Beau had formed a friendship last year in the hall when he would pass her classroom.  From what I understand, and from Beau's reaction to her, their bond only increased as the year went on.  My prayer was that the school had noticed this and that Beau would end up in her classroom. 

When I checked in today at the school I was delighted to see that Beau was assigned to be in Ms. Foss' 3rd grade classroom.  When I spotted the principal I asked her about how it all came about.  I wasn't sure if they had purposefully introduced him to her in preparation for 3rd grade or if it was just random that it happened.  She told me that it was completely random that he took a liking to Ms. Foss.  He had to pass her classroom during the day and she was always so kind to him and they made a connection.  It was obvious to Ms. Estep what needed to happen.  It was also important to Ms. Foss as she made a request as well that Beau be in her classroom.

Ms. Estep and I continued our conversation about Beau's new special education teacher.  She told us her name is Katie and that she really thinks Beau will respond well to her.  Katie will be calling us to set up a transition meeting along with Beau's former teacher to make the changeover as smooth as possible.  I felt really good about her background and look forward to meeting her in the weeks ahead. 

I thought the conversation with the principal was coming to an end when Ms. Estep shared one more story with me.  I should've known I wasn't going to make it out of that school without crying (joyful tears) - it seems to happen quite often when I meet with staff. 

Ms. Estep had received a call from a parent this summer making a request.  I don't know the parents name nor do I know the name of their child.  This parent called and said they wanted to request that their child be in a particular classroom.  The principal explained that they can't choose which teacher their child gets, however that wasn't what the parent was requesting.  This parent called to specifically request that their child be put in the same 3rd grade classroom as Beau Weichers was assigned to (whoever the teacher may be).

Cue the tears - for both me and the principal. 

As you can guess the principal did the right thing and an exception was made and this child was assigned to the same classroom as Beau. 

Here's what that moment felt like to me.  It felt like my child had an impact.  Maybe they have been in the same class before and they wanted to continue being a buddy for Beau.  Maybe the child hasn't had a class with Beau and their parent felt it was an opportunity for their child to be around someone different and it would provide a life lesson for them.  No matter what the reason, kudos to that parent that picked up the phone and asked to make it happen.  Kudos to the school for making it happen.  Kudos to Ms. Estep for sharing the story with me.

I never imagined Beau would get so lucky in where he went to elementary school.  I never imagined he would still be with his para (5 years strong).  I never imagined he would have a best buddy in his bus driver.  I never imagined he would have such amazing school nursing staff.  I never imagined he would have such a great special education teacher and such inclusive minded, amazing regular classroom teachers.  From the school secretary who helps out with Beau so Ms. Erin can eat her lunch, to the lunch lady that always gave Beau extra ranch dressing, to the janitor that makes a point to say hello to Beau, to the principal, nurses, teachers, paras, bus drivers, etc.; you name it, Hansen has the magic combination. 

I praise the school for knowing what was best for Beau and making those decisions when I didn't even realize it was going on.  They want what we want; what is best for Beau.  I just can't give enough praise to Hansen Elementary and the staff and students.  It takes a village to raise a special child and I'm so glad they are a part of our village. 

And to the anonymous parent that made the request for your child to be in Beau Weichers classroom - thank you.  I don't know if you'll ever know how much that means.  And I promise you, your child will learn things from Beau that books and teachers can't teach them.  Thank you for doing your part to raise a compassionate and understanding human being. 


Thursday, January 14, 2016

17 Letters

As parents of a child with special needs, education can be a big struggle, fear or even a fight.  I feel incredibly lucky that we haven't had to fight or struggle.  I have heard horror stories from parents about their IEP meetings and having to fight with their school district to get what they need for their child.  To say we have been blessed when it's come to Beau's schools, teachers and para would be an understatement. 

It started with Castle Hill School and Ms. Tyna and then it was Hansen Elementary and Mrs. Hutchison.  Beau started at Hansen in Kindergarten and was placed in a self contained special education classroom with Mrs. Hutchison and his para, Erin (who was also with him at Castle Hill).  Throughout his time at Hansen, his more structured educational learning has been done in Mrs. Hutchison's room and then his socialization and integration has been in his assigned kindergarten class, first grade class and now second grade classroom. 

We don't generally get to know the classroom teacher that well because a lot of Beau's learning and goals are all through his IEP and his typical classroom doesn't have much to do with that.  It doesn't bother us as we know that a majority of his time is spent with his great special education teacher.  We attend not only an IEP meeting but we attend the typical conference any other parent would attend. It's always pretty much the same.  They tell us he has fun with the kids when he comes in for specials or at recess and that they enjoy having him visit their room.   However this year it's different.  It seems from day one there's been a connection with his second grade teacher - for all of us, not just Beau. 

Mrs. Schulte has been the difference. 

Mrs. Schulte's class has been the difference.

Children learn by example.  Mrs. Schulte has a combination of compassion, love for her job and a knowledge of inclusion and how important it is.  Most days, my heart tells me that while it's important for Beau to be in that classroom participating and playing at recess, it's even MORE important for his typical peers to have him around them. 

Andy and I attended his conference this fall with Mrs. Schulte and we expected it would be like any other conference we had been to. We were wrong.

Mrs. Schulte began talking about Beau and his effect on her classroom and on her students.

And she began to cry.

She explained to us that she could verbally tell us how important it was for Beau to be in her room and how much his classmates loved him and watched out for him but she didn't figure that would cut it. 

So she handed us a folder.

Inside the folder were 17 handwritten notes from his second grade classmates.  Seventeen beautiful, handwritten notes from Beau's friends.  As Andy and I sat there reading them, with tears in our eyes, it was evident to us that these children really knew Beau.  Some of my favorite lines (I corrected the spelling to make it a little easier to read).....

"Beau always has a smile on his face."

"Beau makes me happy when he learns stuff."

"Beau is a caring friend."

"I like to help him."

"Beau makes me happy when he cheers when I make a basket even when I miss."

"He makes me proud because he is always a caring friend."

".....and that's why Beau is awesome!"

".....and who knew he could be like this.  We are so amazed!"

Here is a sampling of those letters....

Most of these children have been together the last 3 years and like any relationship, they get stronger with time.  I remember years ago thinking, who's going to protect my Beau Beau from the mean bullies at school?  He's nonverbal, how will I ever know if someone has done something to harm him?  He wears diapers, kids will be mean, etc.  I've witnessed it myself, I have heard it from his para Ms. Erin, I've heard it from the teachers; these kids are looking out for Beau.  I know people won't always be nice but I have faith in these kids.  It is clear to me that many of their parents have done a good job talking about those who may have different abilities and how to treat them.  Hansen Elementary should be the school other schools aspire to be like.  These children are learning the beauty of being different and accepting those who aren't just like them.

They are learning that our sweet boy is a special person to know. 

He finds joy in the simplest of things. 

He has that toothy smile on his face most all the time.

He cheers for you even when you miss the shot.

He loves unconditionally. 

I guess we could all learn a lot from Beau. 

I don't know that Mrs. Schulte will ever fully grasp what she did for us that day.  It may have seemed like a simple gesture to her but it went far beyond that for our family. 

I made sure that I wrote a letter to the superintendent of the school district with a copy to the principal.  When someone does something so important, it is imperative that they get recognized or acknowledged.  How she came up with such an idea I don't know.  I just know that it made my husband and I feel really good and like Beau was truly a part of his second grade class. 

And to those of you who may be reading this and happen to be teachers; think outside the box like Mrs. Schulte did and strive to have an impact like she is having on her students and their families. 

"Inclusion elevates all" - Elaine Hall

Tuesday, October 20, 2015

The World Needs More Eliza's....

Something amazing happened 2 months ago (and I'm just now getting around to blogging about it).  I got a random Facebook message from the mother of one of Beau's classmates.  To fully understand how we met and how big this was, I need to give a little back story.

We had met a few months ago at Field Day at school.  I had stayed at the back of the gym, hoping Beau wouldn't notice me at first so that I could watch him and see how he interacted naturally with his classmates.  The first thing I noticed was a little girl that was walking alongside of him, holding his hand, instructing him on how to participate and sitting down beside him and talking with him.  Talking to the little boy that couldn't talk back to her.  I couldn't believe what I was witnessing.  His special education teacher wasn't even having to intervene to help Beau.  This little girl was taking care of my boy. 

After watching for about 20 minutes, I made my presence known and spoke with Andrea, Beau's special education teacher, as well as Beau's regular first grade teacher.  They both spoke highly of this little girl with the big heart.  Her name is Eliza they said.  Then they introduced me to her mother, Jenelle. 

Jenelle was so wonderful to talk to.  She said that Eliza spoke often of Beau.  Since Beau is non-verbal I don't often hear about his classmates at school.  I learned that Eliza has 2 sisters and 2 brothers and sadly had lost another brother, 2 year old Caleb, in December after complications from a routine tonsillectomy.  I remember thinking, how is this woman even standing here talking to me?  Her strength and her heart were amazing.  I quickly realized where Eliza got her loving spirit from.

After that day, I didn't really have much contact with Jenelle except for becoming friends on Facebook.  It wasn't until school was drawing near that we reconnected.  Our family had attended back pack night at school and the teachers had arranged it so that we could bring Beau about 15 minutes earlier than the other families because of the stress the night had caused him the previous year.  As always, his wonderful teachers and staff were thinking of what would be best for Beau.  As a result of going early, we didn't get to see too many families or too many of his classmates.  We were excited to learn that Eliza would be in Beau's 2nd grade class with him (when he wasn't attending his special education room).  I knew he would have an advocate with him and that made my heart happy.

This brings me back to the message I received that Saturday morning, after back pack night.  Jenelle messaged me asking if there was any possible way we could get the kids together over the weekend before school started on Monday.  She mentioned how bummed Eliza had been when she hadn't seen Beau at back pack night. 

I couldn't believe it.  Somebody, Beau's age, a typical little girl, wanted to come and play with my Beau.  Really? 

I was with the kids outside when Jenelle arrived with Eliza and her sister Lydia.  Beau was on his prized digger in the sandbox and I wish I could explain the look on his face when they pulled up, parked and Eliza stepped out of the car. 

His eyes got huge.  His jaw dropped.  He did the Beau squeal and he stepped off his digger and signed for Eliza to sit.  She quickly obliged and for anyone who truly knows Beau, he loves to "direct" play and she did everything he asked.  They played wonderfully together in the sandbox and Delaney and Lydia played together as well.  I watched while talking with Jenelle and was amazed at how Eliza knew exactly what Beau was "saying" to her.  She could list his likes and dislikes and she knew so much about Beau.

The kids continued to play and Eliza continued to interact with Beau, smile with Beau, laugh with Beau and they played like two 7 year old kids should play.  She knew Beau loved basketball; she grabbed a ball and the hoop and they played basketball.  She knew Beau loved watching gymnastics; she did a headstand, a cartwheel and more.  She knew he loved cars and trucks; she played cars and trucks with him. 

My son didn't stop smiling the entire hour and a half they were there. 

I'd never experienced anything like it. 

Not long after Jenelle, Eliza and Lydia left I received a text message from Jenelle.  She was relaying to me what Eliza had said to her after leaving our house.  "Mom, I think I'm going to marry Beau."  She had said it in the most matter of fact way.  My response to Jenelle talked about how much it made me smile to know that somebody his own age loves him 100% for him and doesn't care about the diagnosis and the difference between them. 

Out of curiosity, Jenelle decided to ask Eliza if she thinks that Beau is different. 

Her reaction and answer; priceless.

She looked at her mother, confused at such a question and very simply said, "No." When asked what she thinks of Beau, she smiled and said, "He's good.  I like him.  I think I might marry him."

A genuine friend.  A pure heart.  A kind soul.  One simple response to the question, do you think that Beau is different? "No."

That night after the kids had gone to sleep, the magnitude of the events of the day hit me hard.  This was the first "friend" Beau had over to play with him.  Never has any child wanted to come over and play with Beau.  I get it and I expect it.  The older he gets, the wider the gap gets between his classmates and himself.  He can't communicate like everyone else, he wears diapers and he drools a lot.  But I laid there that night and felt hope. 

And I cried my eyes out. 

Why can't more kids be like Eliza?  She looks past the obvious differences and looks within - at Beau's heart and soul.  She genuinely cares for Beau and he absolutely lights up when she's around. 

Sadly, Eliza and her family will be moving after the first of the year.  Her dad has received a job promotion (which is good news) but sadly that means that their family will be moving away.  Finally Beau has a friend and an advocate and now she will be leaving.  Her mother said that when they told the children, Eliza burst into tears and said, "What about Beau?"

My heart hurts thinking that this beautiful family is leaving; they have endured so much over the past year.  Eliza may never fully comprehend how much she has affected our lives.  She's been a protector to Beau at school, a motherly figure, she befriended Beau, plays with Beau, talks to Beau and above all else, she has loved him unconditionally.  I hope in the few short months she remains here in town, she will help other students find the same understanding and joy in being a friend to Beau. 

Wouldn't the world be a better place if we had more Eliza's?

Yes.  Yes it would.

Friday, March 6, 2015

A Journal in the Attic

While cleaning out our attic last weekend, I came across an old journal in one of the boxes.  The journal had only one entry in it and it was dated January 2, 2009.  Journals are a very private thing and should only be for the author to read, but this is one entry I am willing to share.  This falls into the period of my life before Beau's diagnosis:

Friday January 2, 2009,

I'm sitting here writing as Beau is taking his bath.  It's amazing how fast he's growing.  I can't believe that next month he'll be one already - amazing!  I worry because he's delayed with a lot.  He won't hold his own bottle, he can't crawl, he babbles a lot but no consistent mama or dada.  I'm just scared because I see all of these babies around us and they're so much more advanced than Beau.  I feel I'm not being a good mom - that I should be working with him more to help him become more advanced.  I feel like I need an instructor to tell me how.

There are times when I think back and I remember those moments during his first 17 months before he was diagnosed.  As a first time parent I wasn't really sure, at the time, if I just didn't know what I was doing or if there was something genuinely wrong.  I guess all along I had a pretty good gut feeling but when the doctors couldn't give me an answer it was just pushed off as "he's a boy - boy's develop slower than girls"....."he's a chunky boy, that's why he can't roll over, sit up, crawl..."  

Six years later, another child, and I now know how much different raising a typically developing child can be.  We have both ends of the spectrum in our house.  There are rewarding moments with both children and it has given me such a unique perspective and different outlook on life.  Finding this journal took me back to a period in my life that in some ways was perplexing and in other ways was bliss.  At that time I may have been concerned about his development, but I didn't have the fear of seizures; I didn't know that 6 years later he still wouldn't be talking or that he'd still be in diapers. 

Today at least we know what we're dealing with and we are stronger than we ever imagined.  Even better, Beau eventually did those things he wasn't doing when I wrote that journal entry; he crawled, he held his own cup, he consistently says mama and dada (music to our ears) he walks and he can even run (albeit it's a little like a drunk person) but nonetheless it's a run! Sweet Beau has been through so much since January 2, 2009 and his strength amazes me - he is my hero.

"I believe that to nurture my soul and fulfill my soul's purpose, I must learn from every event in my life, I must come to realize that every experience has within it a seed of tremendous gift."

Author: unknown                

Tuesday, May 27, 2014

"Why is Beau, Beau?"

Earlier this month, we spent May 6th through May 8th inpatient at the University of Iowa Children's Hospital for an inpatient video EEG.  For those of you that have experienced these, they don't seem to get any easier as your child gets older.  You're stuck in a 10 x 10 room and tethered to a long cable. This test was necessary as Beau had been having some strange episodes in which his right leg gives out on him and he is unable to use it for approximately 20-30 minutes.  The leg then remains weak for the remainder of the day.  These episodes were becoming more frequent, so Dr. Joshi decided it would be good to get him in to see if they could catch one on video EEG. 

The hook-up was stressful as it always is.  Beau hates being held down for procedures and then you add into it the strong odor of the glue and the loud noise of the air gun.  We had the added annoyance of the EEG manager who decided to cram herself into our small room with Andy, myself and the EEG tech.  She clearly had not even peaked at his chart because she thought he could talk and asked him repeated questions.  Andy and I were busy focusing on Beau so we didn't say anything until Andy got Beau to calm down enough that he wasn't screaming.  It was then that I told her to stop asking him questions, he wasn't going to answer; he's non-verbal! 

Once the hook up was over Beau and I bonded for the next couple days and played lots of Nerf basketball.  I'm sure the technician loved having the basketball hoop hanging near the camera.  That ball came right for that camera several times :)  Luckily there was construction work going on right outside our window so it provided some amazing entertainment for Beau.

On Wednesday the EEG tech informed us she could unhook him from the wall in our room and re-connect him to a unit in the playroom which also had a video camera.  It was there that Beau enjoyed his time with a sweet volunteer who happens to be a nursing student at the college.  She played grocery store with him and got in the playhouse with him which made his morning! 

Dr. Joshi stopped in to speak with me briefly on Wednesday stating that she would keep him one more night and then she wanted to do a spinal tap on him.  She showed me 3 pictures from 3 different inpatient EEG's.  One picture was from the current visit.  When we held it next to his previous EEG's it showed the most improved EEG.  Her comment to me was that because there aren't any structural abnormalities that she knows of near the part of the brain that controls verbal communication, she is trying to determine why Beau can't talk.  To be honest, I accepted long ago that Beau won't ever talk, but I guess it is puzzling her because he EEG is looking so good and the epilepsy is under fairly good control with the 3 medications he is on.  She feels like with that under control, he should be gaining verbally.  She said the spinal tap would indicate if there was any chemical problems in the CSF (cerebrospinal fluid).  Since there isn't a structural problem, her next step was to look at the chemicals in the brain. 


The following day the sedation team got Beau put to sleep and the spinal tap was done.  They removed 6 vials of CSF from the little guy.  We were told it would take 2 weeks to get results back.  Beau woke up a few hours later and they gave him a bunch of Mt. Dew to try to keep him from getting a spinal headache.  This little man normally only drinks water and nothing else because he doesn't really like anything else.  He was so thirsty because he had been NPO for so long that he drank the Mt. Dew.  He was flying off the walls on the way home!  It was just a joy to see him smiling and happy - even if he was highly caffeinated lol!

At the end of last week Dr. Joshi called me with the results and her overall impression.  First off she still doesn't know what the episodes are with the right leg.  She didn't catch one on video while we were there.  He had an episode our first night there but we weren't able to get him to try and walk so she had no video proof of what was happening.  We will now have to catch one on our phone when they happen and send it to her.  According to the doctor, this is the best EEG Beau has ever had.  To us, this explains why he continues to grow in school - it may be small growth but in our world it's huge because it's growth and not regression!  This is when Dr. Joshi said....

"Why is Beau, Beau?"  She is struggling to understand, why, if the EEG is so improved and there are no other structural issues beyond the one we know about, why does he have epilepsy and why can't he talk?  I could tell that she is trying so hard to figure out what we aren't seeing.  She's trying to put this puzzle together and there are pieces missing so we can't see a clear picture and it doesn't allow us to develop a long term plan of care. 

The next step is to see her for a visit next month and she will run a GeneDX panel on Beau.  This will look at Beau's own genetic make-up.  I was tested after his diagnosis for any genetic issues and none were ever found on me.  We went through the testing not only for Beau but to determine if we would ever have more children of our own.  This blood test will look for 50 different genes according to Dr. Joshi.  This may give her an explanation for his epilepsy as well as his inability to speak - although he can speak about 10 words and can vocalize noises, grunts, etc.  This test will take approximately 4 months for results.  Dr. Joshi told me that if nothing shows up on this test she is really stumped.  At that time she wants us to see a neurologist friend of hers that is at the Mayo Clinic in Rochester.  She thinks that maybe a fresh set of eyes and mind, might yield some new ideas on what might be going on with Beau. 

I did ask Dr. Joshi about the possibility of Beau having some form of autism.  In her mind she doesn't feel that he does at all.  She is going to have him re-evaluated at the Center for Disability and Development there on campus.  He was evaluated when he was 2 so we will have him re-evaluated.  Nobody had ever mentioned autism but sometimes he does things that have made me question it but after talking with her that will be taken out of the equation for now. 

Overall, here are my thoughts.  I accepted long ago that my son isn't going to talk.  He says 2 very important words and that is really all that matters - he can say "mama" and he can say "dada".  He can sign numerous other words and he has the most expressive eyes, amazing smile, glorious squeal of joy, beautiful freckles that cover his cheeks and he gives the BEST hugs ever.  Call me a pessimist, but I call myself a realist.  Don't get me wrong, if he starts talking one day I'd love to be proven wrong!  Dr. Joshi's discussion about looking for what else must be going has made me think.

"Why is Beau, Beau?"

If answers can be found that will help us with his plan of care, fabulous!  If no answers are found, it's OK because I realized a long time ago why Beau is Beau.

Beau is Beau because God made him and created him so beautifully and so perfect.  Beau is Beau because God needed a special messenger so that adults and children alike could learn from his uniqueness and charm and become understanding of so many others with differences.  Beau is Beau so that other children like him can benefit from his non-profit.

I will keep everyone posted in the coming months and share any information or results we might receive. 

Thursday, December 12, 2013

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

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!

Thursday, April 25, 2013

Milestone 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.