Beau's Baby.....

We have a new "baby" in our house this week.  This new "baby" is a doll from the 50's that Beau found at Grandma Carolyn's house.  He's seen her at grandma's house for quite some time, sitting in the closet, usually afraid of her.  But on Tuesday, that all changed and Beau wanted to take the baby from the closet and play with her.  We all sort of wondered about his sudden interest in this doll.  She's a bigger doll and wears a sweater and pants and a diaper.  That afternoon when I picked him up from Carolyn's house, he made sure that I met his baby, held his baby, patted his baby's back and changed her diaper.  Oh yes, I had to do it all and then he wanted me to bathe her!  Needless to say, we weren't leaving grandma's house that night without baby.  He wanted me to hold her in my lap while driving - to which I drew the line and allowed baby to sit on the passenger seat next to me.  That seemed to satisfy Mr. Beau and he was ready to hold her once we got home.

For the past several days/nights baby has become a big piece of Beau's life.  I refer to her as Beau's baby most of the time but we also affectionately call her "Shelly" because Beau can make the sound "Shh" and it's the closest to the sound of a name we could come up with for him to say.  He constantly wants me to hold her or he wants to push her around in his stroller, change her diaper, bathe her etc. Bathing her becomes tricky because she fills up with water.  Beau is insistent though that when he takes a bath, baby takes a bath which results in a long period of time to drain water from the doll.  It becomes quite funny because we have to tip baby forward just right so that the water can drain out of the hole in her mouth.  She looks like a fountain.  On one night after bath, I balanced baby over the edge of the tub and used an open drawer from the washstand to balance baby over the tub so that she could drain.  In the middle of the night when I woke up to use the restroom I scared myself half to death walking in and seeing that baby!  The next morning Beau was obsessing over the doll again and I was trying to get both of us ready for work and school.  I was in the bathroom getting ready and he dropped the large plastic doll on my toes - ouch.  I was fed up with the doll and tossed it out of the bathroom into the hallway.  That was when Beau's actions showed me I was a horrible parent lol.  He was so concerned for that doll that he hurried over to it crying and laid his head on top of it.  I immediately felt horrible.  I had thrown this baby that he considered very special and dear to him.  I have since been much more careful with Beau's baby.

It wasn't until later in the week that we solved the mystery of the ever important doll.  At school, on Tuesday, the same day Beau had removed the baby from the closet at grandma's house, a new little girl had started in his preschool class.  Carolyn had taken Beau into his classroom towards the end of the week and noticed that the new 3 year old had started.  Our family actually knows this family from church but hadn't realized both kids would be in the same class.  From what I have heard this little girl, who is a triplet, is very small for her age, has Down Syndrome and has lots of delays.  She can't walk so she is carried around by the teacher or pushed in her stroller.  Carolyn said that when Beau went in and saw her, he instantly lit up!  His teacher said that he really loved being around "M" and was always trying to help with her care, for example pushing her in her stroller.  It seems that we have found our explanation for the sudden interest in the doll and wanting to carry her around and take care of her.  He seems to be quite fond of his new classmate and is carrying that nurturing home to his baby doll. 

This little boy never ceases to amaze me with his love and emotions.  Seems like he might enjoy a sibling.......maybe some day.  For now Mr. Beau, you'll have to settle for Shhhhhelly!


Sitting baby on the couch to watch football.

This is how you drain water from baby!

We couldn't leave the house without her for our evening walk.



Another hospital stay

I hadn't even finished typing up my blog about our neurology visit on Wednesday the 31st, when on Thursday night, Beau had another prolonged seizure.  This one lasted approximately 20 minutes.  The versed didn't work again this time.  Two times now in the last 2 weeks the versed hasn't stopped the seizure and it makes Beau vomit immediately after giving it.  Vomiting during a seizure is a horrible thing to watch by the way.  This seizure resulted in another ambulance trip to the University of Iowa for more monitoring. 

I'll back up to our appointment that happened on Wednesday prior to this seizure.  At our neurology visit, the doctor came into the room and sat down immediately with quite a bit to say.  Usually she'll come in, ask us some questions and then talk about her plans and then within 15 minutes we're done.  This time was much different though.  She spent over an hour in the room with me, Beau and my mother-in-law Carolyn.  She was very concerned at the increased amount of seizures and this was even before the most recent prolonged seizure.  She had reviewed his inpatient EEG from April of this year and pulled up a few clips for me to see.  She showed me what his brain was doing at night during sleep.  Literally EVERY second during the night, Beau's brain was firing off electrical activity.  It was firing during the day, but not quite as often as during the night.  It would make sense, since all of his seizures have occurred during sleep.  Looking closer, she was able to determine that a huge amount of the electrical activity is coming from the midline frontal portion of the brain.  This isn't where the partial agenesis of the corpus callosum is, so she is thinking that there is actually something more that is going on his brain.  Based on what I've told her are my observations, the way his seizures display themselves and her review of the EEG, she believes that Beau has another brain abnormality that wasn't visible on his initial MRI at 17 months because his brain was so immature.  Therefore, she wants to get another MRI done since Beau's brain is now more mature and she can ask for specific cuts on the MRI in the frontal lobe of the brain.  She believes that she will find that Beau has cortical dysplasia - another congenital brain abnormality.  If she is unable to get a good view on the MRI, she is going to order a PET scan to see if it can be visualized on there.  She explained to me that when Beau's brain is constantly firing, it is inhibiting much intellectual growth.  She's even more concerned now that his brain has shown us that it can have status seizures.  The most anti-seizure drugs that she will put a child on at one time is 3.  After this latest seizure, Beau is maxed on 2 drugs and a third one has been added at bedtime to the other two.  First line of treatment is medication.  If the meds won't stop it, down the road we think about surgery.  The MRI gives the doctor information about whether or not neurosurgery would be an option down the road.  The word neurosurgery in the same sentence as Beau makes me want to vomit.  I can't put the cart before the horse, so right now I choose not to think too much about that.  We don't even know yet if that would ever be a possibility.  I just wonder how many more things they can possibly find wrong with his brain on this MRI?  Nothing went right in the formation of my poor baby's brain - with the exception of his ability to love and charm. 

I mentioned to the doctor that I had read a lot about the higher possibility of kids with ACC having heart issues, because it is a midline structure.  She told me that kids diagnosed with C-ACC will have an ECHO as a part of the routine package of tests that come along with the diagnosis.  Because Beau has P-ACC it wasn't originally done.  She said at any time she would order it if she felt necessary.  During her physical assessment of Beau she listened to his heart, heard a murmur and decided to order the ECHO.  During our hospitalization on Friday, the ECHO was done.  We think everything was OK, but will wait to hear from our doctor next week. 

We've now increased to the max our doses of 2 anti-seizure drugs, Keppra & Carbamazepine (Tegretol) and we've added Dilantin at night.  We've changed from versed to Diastat as an emergency rescue drug and we've been hit with the thought of another brain abnormality and the mention of the word neurosurgery.  I feel like maybe someone is playing a sick joke on me or maybe I just got hit by a bus.  I'm like one of those inflatable punching bags that you punch and it falls over and then pops right back up, only to be hit again.  I'm often known to say "It could always be worse - there are other families dealing with more difficult things" which on most days I really do feel.  But today I feel like saying to some people, "you're damn lucky and you're blessed that your child doesn't have to go through this hell".  The toll this takes on the child and the family is a lot and it takes a huge amount of strength to deal with on a daily basis.  Imagine how you might feel if you were terrified to go to sleep because you might miss your child having a horrible seizure?  This little boy deserves something fun and great in his life - not this crap. 

This last hospital stay and experience at the U of I was horrible and I wasn't impressed at all.  Had we been able to see our own neurologist, it would have been much better.  Instead we had a Japanese resident that couldn't speak well enough English and couldn't understand some of the words I used with him.  A lot was lost in translation.  The tipping point was when I informed him I wouldn't leave the hospital without Diastat instead of the versed.  When Dr. Dummy didn't know what Diastat was, I about lost it. You're dealing with a neuro patient with seizures and you don't know what Diastat is?  Later when he ordered the drug I asked him when I was to give the drug.  With versed you wait 3-4 minutes into the seizure before you give it, because he might come out of the seizure on his own.  Doc Dummy told me to give it immediately - at the onset of symptoms.  WTF?  My words to him were, "Why would I do that?  His seizure could stop at 20 seconds and now I've given him a nasty drug for no reason." His answer "No you give right away.  Take longer to get in system." I proceeded to let him know I didn't agree and that I would check with the pharmacist.  When the pharmacist didn't know I made them page the neurologist on call, who is also head of the department.  Her instructions; give the drug after 5 minutes.  That answer made sense.  I have plenty more of examples from this short trip but that is just one.  I will have plenty to complain about to whoever will listen at the U of I. 

Now we're home and we look towards the MRI which will take place on September 15th.  Meanwhile I wait for the next bad seizure and feel confident that the odds of it happening are very high.  I give his body one week and then it will have adjusted itself to the drugs again and we'll be back at it.  Some may call that negative thinking, I call it reality. 

As always, prayers are always welcome and never turned away.  Keep Beau in your hearts and minds as he goes through these difficult trials and tribulations. 

"My son, my precious child,
I love you and I would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you."

Pure, simple joy....

Often times I stress so much about the day to day duties of my job, taking care of the house, being a wife and being a mother to a special needs child, that I often forget to take joy in life's simple yet fabulous moments.  Tonight, my toddler reminded me of how beautiful life is, even when it's something so simple.

Beau has found that it's pretty fun to throw washcloths.  It was actually a bad habit that grandma DeWitt taught him, but it's become quite funny.  Tonight, while taking his bath he wanted to play the washcloth throwing game.  I figure he's been watching football so much lately that throwing will be the fun thing to do during football season!  You see, we have a door on our tub shower combination and the rules of Beau's game are this; ball up the wet, squeezed out washcloth and throw it over the top of the doors.  That's it, that's the rules.  We did this multiple times and his laughter grew and grew.  It was the full belly laugh and the sparkle in his eyes that was completely contagious.  There's something so beautiful about a child's laughter.  I began laughing as hard as him and we both nearly cried tears of joy we were laughing so hard.  I don't think that I have laughed that hard in a long time.  I had to pick up the phone and call Grandma and Grandpa DeWitt and as soon as they heard him laughing that pure joyous laugh, they too began laughing beyond control. 

It's amazing how something as simple as throwing a washcloth could be such a memorable moment.  I stress so much about Beau and his health that it makes me truly appreciate how big these "little" moments are.  And next time you want to play a fun game can I recommend washcloth football?

Pure. Simple. Joy.

Back to school...

I am pleased to announce that after a slight delay (a few days due to his illness) Beau started back to school yesterday and had a great day.  He goes to a special education preschool classroom and started going there in March of this year.  He didn't get much school experience as school was out at the end of May, but in the short time he was there, he seemed to do extremely well.  He has his same teacher, a wonderful young teacher that is eager and excited to work with these kids.  She was a long term sub last semester and at the end of the year beat out a lot of applicants to get the full time position.  Thank goodness for that because she does so good with these kids.  Right now there are 2 aides and Ms. Tyna and there are only 3 children total in the classroom.  There will be 2 more children joining in the next 2 months, but right now he gets the one-on-one he needs, especially for safety reasons with his horrible balance. 

One thing that Ms. Tyna did that I was so happy about was that she modified the traditional PECS (picture exchange communication system) system by taking real photographs of items (i.e. his seat at the breakfast table, the sink, the potty, the different stations in the room, food that they typically eat at school, etc.).  Beau has always responded so well to REAL pictures as opposed to the computerized pictures the PECS system uses.  I know they want these children to learn these because they are very universal - for instance, not all sinks look like the one at school, etc. - BUT I want to use whatever will help Beau to be successful.  If the system doesn't work for everybody, let's modify it so that we can make it work for others.  Therapists and educators used to fight me on this, but now they are starting to come around to my way of thinking when it comes to Beau.  Take the extra time, take real pictures and mix them in with the other computer generated ones if you wish.  Modify your plan to fit the needs of the child.  Beau's teacher took the time to do this for Beau and on his first day of school she said he did GREAT with the picture exchange system.  It was all because she individualized her plan for Beau and took the extra time to help him, making it more possible for him to become successful.  There should be more teachers out there like Ms. Tyna! 

All in all, a great first day for Mr. Beau.  He's still a little wobbly and a little extra tired from the medication increase, but slowly but surely we are getting back to the pre-prolonged seizure Beau.  He's resilient, he's tough, he's charismatic and extremely loving.  Who could ask for anything better?

Just breathe...

I guess I'm finally taking a moment to just breathe and relax.  So much of my energy has gone into worrying about Beau this past week that I seemed to neglect my own feelings and emotions.  I guess as a parent you seem to go on "auto pilot" and you let the adrenaline carry you through.  It's what happens after the adrenaline wears off that can be hard to deal with.  You're so grateful that the hard time is over but you now deal with the after effects.  There are a lot of questions that go through your mind when your child is ill, sick or in an emergency situation.  I think the thing I'm having the hardest time coping with is that there isn't a concrete answer as to why Beau had such a prolonged seizure.  I want to know "why"?  I believe there is a multitude of reasons for the horrible seizure.  He was having mini seizures for the last month.  His neurologist had increased his carbamazepine (Tegretol) as a result.  They couldn't go any higher on his Keppra-he was already at the max.  He'd also been having ear infections the past 2 weeks.  For his first ear infection, they put him on omnicef.  A week later the other ear was infected.  That time, the doctor prescribed, azithromycin.  We were at the end of the round of azithromycin when the seizure occurred.  Here is where I feel I made an error; I didn't read the drug insert when I got it from the pharmacy.  Beau had taken azithromycin previously - but he wasn't on carbamazepine when he did.  The neurologist informed me that azithromycin can inhibit some of the absorption of carbamazepine, lowering his seizure threshold.  I put my faith in the local doctor but mostly in the pharmacist to know that interaction.  I shouldn't have had to read the insert, but I have learned my lesson!  Not very far into the insert is the warning about carbamazepine and how it's absorption can be affected by the azithromycin.  Word to the wise - don't ever expect that your physician or your pharmacist will catch those things for you.  I guess I've known for quite some time now that you have to be your own advocate but this locked it in for me.  There is no way to know that this was the exact cause of the seizure.  I don't believe it was completely, as I think there were other factors involved.  The fact is, it happened and now we move forward and pray that God will give Beau a little reprieve from the crappy days he's been having.  Once again, I am amazed at Beau's strength, resiliency and ability to smile through it all.  I can't believe how lucky we are to have such an inspirational and amazing child. 

In the ER.  The seizure had finally stopped and he's out like a light.

After several rounds of vomiting after arriving at the U of I, he got some meds to help stop it and was finally able to sleep.

The day after; exhausted but still wanted to ride around the unit in a wagon.

This picture says it all - sooooo tired.

Beau with "bampa" Ron, who came to visit.

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
-- Albert Einstein

Enough already....

Sitting in the pediatrics unit at the University of Iowa at Beau's bedside, exhausted.  During nap today Beau started having a seizure.  Erin, our babysitter did an amazing job.  She administered his rescue drug when the seizure hit the 3 minute mark, called me, the seizure wasn't stopping so I told her to hang up and call 9-1-1.  I called Andy and he was close to home so he beat the ambulance there and I had to drive from work.  By the time I got to the house the ambulance was gone but Erin was still there.  I felt so badly for her because she was so overwhelmed.  It was her last day for this summer and what a way to end it.  She was pale and shaking and trying to clean up the carpet because Beau had gotten sick.  I assured her she did the right thing and did great, grabbed Beau's blankie and meds and rushed to the ER.  I actually squealed the tires on my mini-van which had to be a funny thing to see.  When I arrived Beau was still seizing and after 30 minutes the seizure finally stopped.  Because he had status epilepticus, they wanted to admit him and they sent him here, to the U of I where all of his specialists are, for observation.  They transported him by ambulance and here we are.  After we arrived he had a rough evening of vomiting and after some medication for the vomiting, he is finally resting.  I'm sorry that this post a little sporadic and poorly written but I'm exhausted and sad.  You hold it together and you hold it together and you hold it together, but eventually you have to break down.  Two ER trips in one week - enough already.  I just keep reminding myself - IT COULD ALWAYS BE WORSE.  Any extra prayers are appreciated because I know He is listening. 

Horrible balance = ER visit

Tonight turned out to be an eventful evening at the Weichers household.  Although in our life, it seems to be par for the course.  Beau's horrible balance causes a whole bunch of falls per day.  I guess I should be grateful that we aren't in the emergency room more often with injuries. Tonight neither Andy or I could catch Beau as he took a tumble.  He was simply walking, got off balance, fell and hit his head on the corner of the wall.  He ended up with a pretty good gash in his head.  A trip to the ER and 3 staples later and we were home. Poor kiddo.