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! 

Tuesday, September 17, 2013

Post from my personal blog

http://anncredible.blogspot.com/2013/09/tidal-wave.html

September 16, 2013
Tidal Wave

For the past couple years, I have been travelling in the barrel of a giant wave, trying to keep my balance and sanity.  I've been teetering back and forth, caring for the kids, struggling with my ex, and trying to maintain a personal life of my own.  It hasn't been easy, but I have been patient, and kept my head up, looking for wonderful things towards the horizon.

Today, this emornmous wave has crashed down upon me.  I have just been diagnosed with an agressive form of breast cancer.  It has already spread, and I am still awaiting more testing to determine the extent.  The bottom line is, it was not caught early.  It's an awful feeling to know that something so destructive has been growing inside my body.

I am tumbling, gasping for air, and feel the full force of the shock.  A million questions race through my mind.  Could it have been diagnosed sooner?  How long will I live?  Will the children understand?  How will I have enough energy to fight this when I barely make it through a day as it is?  Am I strong enough?  If I'm not strong enough, will I feel like I've failed my family?

I'm not sad.  I trust that God has a plan.  The only fear I have is of the things I do not know yet.  But I know the answers will come in time.

As my friends, if you don't know what to do or say, maybe I can provide some insight.  It's wonderful to hear that you're there to help.  That's all I want or need.  I don't know the answers to a lot of questions being asked right now.  And I feel like I'm doing a lot of stuff to make other people feel okay about my cancer. "Don't worry, I'll be fine."  Honestly, I really don't know how it's going to turn out.

I don't have energy to talk to the many survivors that people are offering.  It's kind and generous to offer, but it's so stressful to me to try and make time for more people.  I can barely keep up.  I need time to process what is going on.  I need time to wallow, for at least a moment, in what is taking over my body.  I need time to figure out what my plans are, the what ifs, the challenges.  I just need time and support.

If you are going to pray, pray for one thing only, strength.  I do not question God's plan or ask him to change the course of my life.  I trust that he knows what he's doing.  I just ask that I am strong enough to handle what he gives.

This has been a relentless storm.  I have taken a beating over and over, and I wasn't even standing upright yet when I was hit again.   But I will fight as hard as I have to, for as long as I can.  After all, I did say I was Anncredible.



Tuesday, May 28, 2013

Saturday, May 25, 2013

Weekend Project for Eman


Make-A-Wish put a handicapped accessible playground in the back yard, but the only way to get Eliah to it was to go out the front door and around the house, weaving through bumpy tree roots.  He needed a way to get to it from the back of the house, but all I had were steps, with a broken railing and a huge hole at the bottom (I blame the dog).


So....today I built something for Eliah, a wheelchair ramp.  I had no clue how to begin.  I had no tools to speak of, with exception of a drill.  And I had no help.

Off I went on my mission to Lowe's last night.  Despite their shock that I would be doing this project myself, they were extremely helpful and figured out how much lumber I would need.  They cut the stuff that was all going to be the same size.  I even got a cheap circular saw.  I was ready.....




I started around 10am this morning in the back yard, with my neighbor eagerly standing watch, DYING to help me.  But I politely said that I wanted to see if I could do it all by myself.  It was a challenge I was ready to take on.

I laid the joists out and developed a plan as I went.


After a bunch of head scratching, sawing, bracing and drilling, it started to come together better than I had hoped.



Within a few hours, I had myself a great looking ramp....or boat dock....



One more trip to Lowe's to pick up the last couple boards (that was sooo close), and added side runners to prevent the wheelchair from going over the edge, and I had myself a very sturdy, but removable, wheelchair ramp!!  Go me!




Tuesday, May 21, 2013

Still Going.....

As you may have noticed, this is a new blog address and layout.  There have been many unfortunate things happening as of late, like my ex stealing the blog and deleting it, among MANY other things, but we are here.....still going.

I admit it, sometimes I need help.  I am a single mother of two children, with one requiring an enormous amount of time, energy, attention and health care.   I maintain my home, yard, bills, and everything else by myself.  I do not have family close by, and I am not good at maintaining friendships, because I don't have time or energy to devote properly.

I do have a couple nurses and a home health aide that come here to help with Eliah about 20 hours a week, and I adore them completely.  But the other times, I am alone with a ridiculous amount of responsibility that is literally life and death.  And I feel like I can no longer trust or count on the children's father (or his family) to provide appropriate care or resources for the children.  What was once a very civil relationship, and doing what is best for the kids, has turned into an all out war, with the children suffering both mentally, physically and financially.

Typically, I do not post extremely personal things online, but I feel like I need a little mental support from those that champion for Eliah and Natalie.  I will not post specifics, but I do ask that you all pray for the welfare of the kids, the wisdom of the court system, and the strength and patience to continue to fight this ongoing battle.  And pray that I have the strength to handle the kids all the time if it comes to that.

Natalie and Eliah have been doing well, when in my care, and we have even been on a few adventures in the past few weeks.  We went to my niece's wedding in NC, and the kids were able to see their cousins, aunts, uncles, and my dad & his wife.  That was the first time the kids had seen my family in three years.  Hopefully it won't be that long again.

Eliah also received his new wheelchair in the past few weeks.  He was so excited about it, he couldn't sleep the night before.  This will be his wheelchair for the next 5-7 years, so I'm really glad he loves it!

Molly, the dog, is still going strong too.  She tires easily, so she spends a great deal of time keeping track of Eliah's fish.  Natalie and Molly absolutely love each other, sometimes a little too much.  Occasionally I hear, "No Molly, don't hump me!"

The seizures with Eliah are still bad, but seem to coincide with growth spurts or his new molars coming in.  I've also had to increase his zantac, since screaming and skipping meals has become common again.   In the past week, he's been able to tell me that his stomach hurt one day and his teeth hurt the other with the use of "yes/no" speech buttons on the ipad (donated by wonderful people). That, in itself, is a GIANT step towards functional communication.

Eliah and Natalie are finishing up their school year, and we are looking forward to the summer.  We'll spend our days eating sno-cones, playing on the waterslide and playground, and maybe even go on another adventure or two.  We'll see.

The bottom line is, we are STILL going.
























Friday, May 17, 2013

Head, Shoulders, Knees and Toes...

Monday, April 8, 2013


Head, Shoulders, Knees and Toes....




The seizures continue with Eliah every couple days.  Some days they are mild and manageable, and some days they are strong and scary.  Yesterday morning was one of the scariest seizures;  Eliah stopped breathing for more than a minute (almost two), even with me giving him a couple breaths.  The following video was taken to show the Neurologist what we're currently dealing with.



I'm currently waiting for a call back from the Neurologist about Eliah's medications.  He's increased his Vimpat twice in the past few months, and we will potentially increase it again.   Eliah builds up a tolerance very quickly, and his body metabolizes his medication too fast.  We had labs done a couple months ago, and it showed barely any medication in his body at the time.  He also tested significantly deficient in Vitamin D; partly from not getting enough sun, and partly as a side effect from Vimpat.  I've started giving him supplements and trying to get him in the sun, but the sun also causes seizures.  It's a vicious circle.

The other option is to try another drug called ONFI (Clobazam).  I'm hesitant to try because of the interaction with his blood pressure medication, and from what I understand, it's a very strong sedative that causes a drunk-like state.  Eliah's doing so well with school and therapy right now, that I hate to mess that up.

In other news, Eliah has had some leg/hip issues.  For a few years now, Eliah's right leg has been longer than his left, and we feared that his hips were coming out of socket.  Last month, when putting him in his wheelchair, I noticed that his right leg stuck out much further than usual, so his physical therapist consulted with the doctor.  We had x-rays done in March, and had our consult with the Orthopedist this morning.  I snapped a photo of one of his x-rays (below).  


According to the Ortho doc this morning, Eliah's hips are both partially dislocated.  His right leg is, in fact, larger than the left leg.  Due to Eliah's Cerebral Palsy and brain damage, his Neuromuscular system is sending misinformation about where his body should grow and develop.  Over time, this system will cause both hips to completely dislocate.  There is nothing that will prevent that from happening.  

At this point in time, the doctor said that the way to fix the current problem is to do a very long and intensive surgery addressing three issues.  They would have to cut his hip bone, and cut part of the tops of each femur in order to get them into the correct spots, then screw and pin it all into place.  Once that is done, they would put him in a body cast for six months.  At the end of six months, they would operate again to remove the pins and screws.  

However, due to Eliah's severe Hemophilia and his seizures, the doctor does not feel that it would be helpful in this situation to do his surgery.  He explained that, even with regular people, it is very difficult to stop bleeding when cutting bone.  Add Eliah's Hemophilia to the mix, and he could bleed out on the table.  And because this surgery would be such a big stress on Eliah, his seizures (and lack of breathing during seizures), would be another major obstacle.  On top of THAT, the cast would come up to his chest, making it very difficult, if not impossible, to give him CPR.  And there are no guarantees that the surgery would even work.

If we do leave him the way he is now, his hips will dislocate.  If that causes him pain, like his leg bones rubbing against his hip bones, they would consider doing a surgery to remove the tops of both femurs.  And again, there is that problem of excessive bleeding when cutting bone. 

So, that is what has been going on with Eliah.  He has school almost every day and loves his tough teacher.  Molly (our doggy) is still taking good care of Eliah by telling us when he's going to have a seizure.  Eliah is still a happy boy and we will always hope for the best.  I'm very thankful for all the people that check on him and pray for our family.  

This is Why....

Tuesday, January 29, 2013

This is the reason I am home with Eliah every day and cannot work.  This is the reason he's not allowed to be in a "facility" that treats special needs children.  This is the reason he has homebound school, physical therapy, occupational therapy and speech therapy.  This is the reason that he has nurses  and home health aides that come to help.  This is the reason I can't walk away to go to the bathroom or eat or shower.  This is the reason I worry....

FIRST DAY OF SCHOOL! FIRST DAY OF SCHOOL!!

NOW Eliah is a Kindergartner...  He had his first day of school today, and loved his new teacher.  We had to switch to another teacher, since the first one never showed up.  But, they read books, played with toys, and worked on reaching and making eye contact.  Eman is officially worn out...and happy!


Eliah is a Kindergartner!!

Thursday, November 15, 2012




Well.....almost....  Today was supposed to be his first day of home-bound school, but his teacher has a health issue.  So, starting next week, Eliah will have school for an hour a day, two or three days a week.  He was so excited about it when he got up this morning, he had a seizure.

But after a good nap, and rebooting his little computer brain, he was ready to go.  I'm anxious and excited to see what's in store for him in the coming months!

Eliah's First Time in a Power Chair

Tuesday, November 6, 2012

video

The Ocean Was Calling for E-man

Wednesday, October 31, 2012

First moment on the beach

Natalie was thrilled with her finds

And she had a blast in the ocean

Eman loved riding on the beach

Watching the sunrise

Beautiful girl

The sunrise was gorgeous

Warmed Eman's face

Me and the kids riding on the beach

We had a great time

Navigating the fallen trees

Happy boy still high from vacation