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