Monday, November 11, 2013

Turbulence

Eliah has been having small jerks/startles for several months, but never realized they were seizures.  I thought maybe they were his hip joints rubbing together, biting his tongue, or something that I just didn't know.  When I took Eliah to the Neurologist in August, it was just for a check up.  While at the doctor's office, Eliah startled a couple times and the doctor took notice.  He immediately requested an EEG.  

We went back to do the EEG for about 45 minutes, and during that time, Eliah had the "jerks" about every three minutes.  The doctor came in to tell me that those were seizures, and that Eliah was having LOTS of them.  Based on the fact that he was having them every 3-4 minutes all day long, I calculated that he was having 50-200 a day on top of his bi-weekly large seizures.

Last night, Kelley called to tell me that Eliah had a major seizure in the car.  He stopped breathing, and it took 15 minutes before Versed (sedative) started to calm him down.  When they got to the emergency room, Eliah's temperature was 104 and chest x-ray showed that he has pneumonia.  Eliah also spent several hours on an EEG today.  

When I arrived at the hospital this afternoon, Eliah was still getting his EEG.  The Neurologist was called in to see that Eliah's seizures have gotten much worse since August.  He said that his brain is in almost a constant state of seizure while Eliah is sleeping, and there are many while he is awake.  The seizures are stemming from the Occipital lobe of the brain.  He wants to see if that is just because of whatever Eliah's illness is, or if it's all the time, so he wants to repeat the EEG in a few days. 

I personally believe that the increased seizure activity is due to stress of his new schedule with school and the fact that the children have not been able to see me on a regular basis.  

Wednesday, November 6, 2013

Big Boy School

Back in September, I was working with Eliah's Neurologist to control newly found seizures.  Eliah was having little "jerks" throughout the day, and I wasn't sure what they were, so we did an EEG.  Turns out, those jerks were partial seizures.  He was having 50-200 a day, and we were trying in inch up one of his current medications to try and control them.  

When I was diagnosed with cancer, I had to give my ex temporary custody of the children so that I could put all my efforts into staying alive and fighting what's trying to destroy me.  Since then, it's been another big fight to even get time with the children, much less make sure that Eliah's seizures are controlled.  I've seen them only four times in the past six weeks, and only talked on the phone a handful of times (and only by speakerphone on their end), but that will hopefully be resolved soon.  I'm also hoping to find counseling for Natalie, since she told me she is not allowed to talk about me (or express her feelings about my situation) in my ex's home or his parents' home.

With the new custody arrangement, Kelley assured me and the judge that his new wife would quit her job and take care of Eliah full time in their home like I had always done.  Eliah was already set up for homebound schooling, physical therapy, occupational therapy, and speech therapy.  However, before the court order was even signed, they took Eliah to the doctor to change his medication completely, and then requested a special review for school without my knowledge.  

Although I adamantly disagreed with taking Eliah from one hour a day in the home to now almost nine hours a day (a full day of school and an hour bus ride each way), I couldn't do anything but watch.  I did, however, make my opinion known, and I explained my concerns over Eliah's health and safety.  I am still his mother and biggest advocate, you know.  

So, Monday, November 4th, was Eliah's first day of Big Boy School.  There are five students total in the class, all requiring special needs.  I believe Eliah is the only one without a feeding tube.  Eliah will have a nurse with him full time, and he will now get most of his therapies there at school. They even have a Multi-Sensory Environment with swing and ball pit (which makes me happy). 

I talked with Eliah's teacher at length, and gave her suggestions of things that can help Eliah.  She helped calm my fears and explained that Eliah is in good hands and that she will keep me in the loop.  And she was kind enough to send pictures of Eliah on his first couple days of school.  

On his first day of school, Eliah was the "Special Helper of the Day".  The teacher is so pleased with Eliah's ability to interact with the her and other students (He even has a girlfriend already).  She sees how much Eliah comprehends and can communicate through non-verbal actions (this is something that I've been trumpeting to deaf ears for years now).  And she sees how much Eliah wants to participate and learn.  I'm so happy that Eliah has another advocate and that she is so kind.  

So, in saying all of this, I admit that I am happy that, if Eliah cannot be with me during the day, that he is with people that will not only look after his best interests and needs, but listens to me and allows me to be a part of Eliah's plans and activities.  

Here are some pics of Eman enjoying his new school environment...

Eman snuggling with his new teacher 

Floor time

Floor time with toys

Working with new toys

My happy boy

Eman eating lunch, with my voice on the phone in the cup holder. :)

Eman playing and reading a BIG book!