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....


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

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

Eliah is a Star!

Friday, October 5, 2012

Eliah's Make A Wish playground ribbon cutting was filmed by Zaxby's.  Part of it will be used for a commercial, part for training, and one part was used to make this "Wish Diary" on Zaxby's website.  Follow the link to see video of Eliah's new playground.


DIY Special Needs Projects

Wednesday, September 12, 2012

PVC Book/Puzzle Stand

Frame and table for use with Child rite seat

Frame with padded bar across front
Toy/pull up bar

Full setup with rolling casters on the base for Eman to roll around

Wheelchair bike
Wheelchair bike

The smile made every hour of work worth it.
The wheelchair is also removable to be used separately.

Bed Rail
Bed rail padded with rubber flooring, then covered
Utility wagon to transport Eman around the house

Wagon padded with memory foam & rubber flooring

Easy transition from bed to wagon

Wheelchair shade, oxygen carrier, and velcro fan for summertime

Recordable message parrot toy, with large button for Eman to press

Button modification

Padded crib

Weighted Blanket

Wheelchair snuggie

And of course the Sensory room (pics are on their own post)

Now......what will be next???