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                

"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. 

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!