Lamictal Update

So far, so good.  Eliah's rash is still there, but starting to go away.  He was extremely irritable yesterday, but that has now subsided.  It may have been due to a headache from coming off the medicine, so I treated him with Tylenol.

That's the good news.  Now here's the bad.  As I was driving home from dropping Natalie off to school, Eliah napped.  After I stopped to take a couple scenic pictures, I looked back and Eliah was having a strong seizure.  He looked like he was breathing like a fish out of water, and his lips quickly turned blue.  I stopped the car in the middle turn lane, put it park, and reached back to get the oxygen.  As I put my hand on his cheek and told him it would be okay, he came around.  He quickly went back to sleep and slept the rest of the morning.  (frustrated sigh....)

We are almost out of the woods with Lamictal, and we are continuing our journey with seizures.  At least Eliah has been happy all day, and even gave himself a close inspection of his nose and throat to make sure he was all clear. 

Google- Blessing or Curse?

Ever since Eliah was a baby, and we were in the hospital for his first seizure, I have used the internet as a tool to research medical information.  When it comes to my child, there is no such thing as too much information.  I am like a sponge.  I want to know all the possibilities, good or bad, all the tests, and all the treatments.  This is the way I cope.

For years, other people have told me, "Don't Google anything, you'll just scare yourself".  But it's my responsibility as Eliah's mother to know as much as possible.  How else will I know what to look for or what questions to ask.  Yes, I run across a lot of information that makes me panic.  And yes, it would be easier to just put the computer down and tell myself everything will be fine.  Then there are days like yesterday, where Google may have saved Eliah's life.

Eliah has been taking his new medication, Lamictal, for twelve days now.  I have noticed some very good things, like laughing and more focus on babbling, and I have also noticed some small side effects.  And when I picked him up from Kelley's house Monday morning, I noticed a small rash around Eliah's mouth.  Kelley mentioned that he had been battling this eczema type rash over the weekend.  He's had it before, so it wasn't a big deal; just lotion him and wait for it to go away.

The rash didn't go away; it seemed to spread. By late last night, Tuesday night, I started to remember all the information I had read about Eliah's new medication.  Lamictal can cause very serious, life-threatening rashes.  This didn't seem life-threatening, but I pulled out the computer and started to Google photos of Lamictal rashes.  I found one that looked identical to Eliah's, and I immediately called the doctor. 

The Neurologist wanted to see Eliah first thing this morning, before I gave him another dose of Lamictal.  And after close inspection of Eliah's body, the doctor found the rash in several places, and confirmed that Eliah is having a reaction to the medication.  The doctor even said that if Eliah had taken one more day of medication, it could have put him past the point of no return. Now, herein lies the problem....

Lamictal is extremely dangerous, but unfortunately, was kind of a last resort seizure medication.  It is not even approved to be used in children under the age of 16 because of the severity of the reactions.  The rash is more likely to become Stevens Johnson Syndrome in children, 1 in 50 in fact.  If you have never seen what SJS can do, please Google it.  It's scary, painful and can lead to permanent deformity or death.  From what I've read, SJS is already in the body before someone develops any rash.

So where we are now is this, Eliah has several small rashes, a cough (another symptom of SJS), and has discontinued use of Lamictal.  The medication stays in the body for approximately five days.  During that time, his rashes will most likely get worse before they get better, and may turn into this life-threatening syndrome.  We have to watch carefully for fever, as that is another symptom of SJS.  I have to call the Neurologist every morning to give him an update on Eliah's condition.  And as far as managing the seizures, we are two steps back. 

All we can do now is wait....

Cardiologist, EKG, and Echo Cardiogram

Eliah had his appointment with the Cardiologist today, where they weighed, measured, and tested him.  He's 44.8 pounds, 44 inches tall, and his heart tested just fine. Thank goodness!  He still has his heart defect (Patent Ductus Arteriosis), but it's tiny and does not hinder his heart function at all.  Also, despite his high pressure, the walls of his heart have not thickened. 

Yahoo!

And don't forget to look for his guardian angel watching over him while at his appointment.....

I Prefer Oblivion

I think I've been in denial about Eliah's condition for the past four and a half years.  Even when he was in the hospital for his brain bleeds, it never crossed my mind (at the time) that he would die.  I knew that other people had died with the same condition, but it never occurred to me that my son could pass from such a thing. 

I think I'm finally beginning (JUST beginning) to realize how critical Eliah's condition can be. When we talked with the Neurologist, he discussed the fact that Eliah could die from a seizure.  His autonomic nervous system could give out, and he could stop breathing.  The doctor talked about how putting a oxygen monitor on him at night would not prevent a particular end result.  And we sat there and nodded and acted like we understood that he really meant death. 

 It wasn't from truly comprehending what is medically going on with him, but rather seeing it black and white that makes it sink in.  It's all in the writing in front of me.  I received his discharge papers from his Occupational Therapist yesterday afternoon.

The medical director at the Child Development Center spoke with Eliah's Neurologist, and doctor said that yes, Eliah could die at therapy.  He is too fragile to go to therapy.  It's hard to understand this when you look at him.  He doesn't look sick, just delayed.  He's strong and happy, how could be too fragile? 

But I get now.  I GET IT.  He could die any given moment of any given day.  Any one of his six seizures yesterday could have been "the one". 

So what do you do with that information?  You give him all the love you can.  You take lots of photos and videos.  And you do what you can to make great memories for him, and for the whole family.

We are looking forward to Make-A-Wish creating his wish this coming spring.  And through a friend's suggestion, Eliah will be getting a Dream Cake for his 5th Birthday through Icing Smiles.  They sent me an email last night, saying that Eliah met the qualifications and will be receiving a cake.  Here's their link on FB if you want to see what it's about.  https://www.facebook.com/#!/icingsmiles

Now I am going to go love my children. 

The Ultimate Fighter

I could talk about the life lessons Eliah teaches me daily.  I could talk about how he has changed my life in ways I could never imagine.  I could talk about how Eliah awakens each morning with a big smile, despite the health issues he's having.  But it's been said before, by me, and by other parents of special needs children.  What it comes down to is this....  Eliah is one tough kid. 

The past couple days have been very difficult.  He had a total of ten seizures yesterday, and many in the previous days.  Sometimes he stops breathing and his lips turn blue.  The look in his eyes is terrifying, and I have no idea if he feels as scared as he looks. 

We met with the Neurologist to discuss a new medication to try, Lamictal.  It's not normally prescribed for children, and can have very serious and potentially fatal results.  We have to watch him very carefully for any reactions.  After his first dose last night, he is barely able to keep his head up this morning.  He seems comatose.  I hope that improves.  This seems to be a last resort type drug.

The doctor mentioned that we could try an Epilepsy Center to treat him, but it's highly unlikely that they would ever consider brain surgery to fix Eliah's seizures.  Not only because of his Hemophilia, but because there are so many damaged parts to his brain, they wouldn't know where to begin. 

In addition, Eliah's Sympathetic Nervous System is completely wonky (yes, that's a technical term).  The SNS controls the functions of the body like blood pressure, sweating, digestion, temperature and other involuntary actions.  Sometimes, when Eliah's SNS is overactive, it's like being on an adrenaline high all the time.  His blood pressure is out of control, upwards of 160 for Systolic pressure (the force that blood exerts on the artery walls as the heart contracts to pump out the blood).  His hands and feet sweat, his eyes dilate, and he is super sensitive and reactive to his surroundings. 

Then, without warning, he drops out of high gear and goes the other way.  His temperature can be 102 one minute, then within 15 minutes, can be down to 97.  His blood pressure does the same thing.  His body just can't maintain control, and we suspect this is one of the parts of his brain that is damaged.  There is no known way to fix it at this point, not even with stem cell therapy, so we treat the symptoms as we can.

We also met with the Nephrologist last week (blood pressure doctor).  He agrees that Eliah's blood pressure is out of control.  Most of the time it's way too high.  But there are also times that it's normal.  In addition, and I've mentioned this in the past, Eliah's blood pressure is not proportionate.  Meaning, the pressure of what pumps out of his heart (systolic) is much higher than what pumps in to his heart (diastolic).  It's like Eliah's heart cannot keep up with the amount of pressure.  The doctor cannot treat him for high blood pressure, because it will make his heart too weak. 

So, the next step at this point is to head to the Cardiologist.  We need to find out if his heart is getting enlarged from all the work it's performing.  If it's becoming too muscular, we have to treat for high blood pressure.  If it's okay, we just leave it alone and hope he does well.  He is scheduled to have an Echo cardiogram on Tuesday. 

In the meantime, Make-A-Wish called to schedule a photo shoot next weekend with Eliah.  Apparently, Applebee's sponsors them, and Eliah will be assigned his own restaurant within the area, where he will be featured on the menu (not to be eaten).  I better get to fixing his special needs haircut. 

Not to be outdone with Eliah's ongoing fight, Natalie has become a shining star.  She is breezing through the 2nd grade, testing in math and reading at a 5th grade level. She reads about two or three 300 page books a week in addition to her advanced reading books at school. Because of her test results, she has been invited to the Gifted and Talented school in the area.  Only 75 children in the county per grade are invited to go to this school, and we are scheduled to tour the school in just a few hours. 

I'm proud.  I'm proud that no matter what my children are given, they smile, they laugh.  I'm proud that they don't just cope, they fight and work for a better life. 

Do You Believe in Angels?

From the time Eliah was a baby, I have always believed there were angels watching over him.  How else could he have gotten through so much in his life?  It was the work of angels, well, that's what I believe anyway. 

Sometimes he looks like he is listening to something, and will laugh like he just heard a funny joke.  At these times, I believe there are angels talking to him.  Sometimes I believe that he is able to sense more because of his mental condition.  Maybe he doesn't have that barrier between earth and the great beyond that most of us do. 

There have been many moments that I have witnessed acts of a guardian angel first hand.  One example that comes to mind was a time that Kelley set Eliah's carseat in the van, and the next morning, I put Eliah in the carseat assuming it was strapped in.  Eliah was in the carseat, and we began to drive out of a parking lot, not going more than two or three miles per hour.  Out of nowhere, a man with a cowboy hat stepped in front of van, and I slammed on the brakes to avoid hitting him.  The force of the stop shot Eliah's carseat forward and onto the floor of the van.  Kelley and I looked at each other in horror as we heard Eliah screaming. 

I stopped the van and we immediately got out to check on Eliah.  His carseat had left the back seat, hit the wheelchair with the edge, and turned Eliah on his side.  He was scared, but okay, not a scratch or bruise from the incident.  But, had that man not stepped in front of the van, we would have been on the road and going upwards of 50mph.  Had Eliah's seat come loose then, he could have easily died from the force.  To this day, I believe the man in the hat was a guardian angel. 

I've also noticed that, in photos, Eliah almost always has an orb over him. The camera I use doesn't matter, they always show up.  I've noticed for a couple years now, and believe that these orbs are his guardian angels.  Crazy?  Maybe.  Coincidence?  Maybe.  But there are also many times that Eliah should have/would have died if not for pure luck... or the work of angels. 

Take a look at the photos, look at the orbs, and tell me what you think.  The orbs rarely show up in other photos, although they are occasionally right above Natalie's head too.  They are in all of the photos below, and I'm sure in many, many others.  This was just a few of the ones from the past two years that I found.

Are they angels?  Do you believe?

How Long?

The kids have been at Kelley's house the past couple nights, and in that time, Eliah has had three seizures.  The first one he had last night, Kelley had to resuscitate him.  And my first response was, "Poor baby".  Then I worried about what Kelley was going through, because I know how it feels to be in that moment.   There was nothing I could do from here, so I tried to go about my evening as usual.  And then I got another email from Kelley, expressing his concern about putting Eliah in his bed and not knowing if he'll have another seizure during the night.  I tried to reassure Kelley that it would be alright.

By the time I got to bed it hit me.  As I laid there in the dark, my mind wandered.  What does Eliah feel during a seizure? Is he scared? What would we do if Eliah passed away from a seizure?  I thought about rushing over to Kelley's house and seeing ambulances as I pull up.  I thought about who would wake Natalie up to tell her.  Would she always remember that moment for the rest of her life? I thought about the surreal moment of when they confirm his death and we stand there not knowing what to do next. 

Was it a premonition of things to come? That thought alone made the tears begin to flow and I could not stop.  It was like I was no longer in control. The knot in my stomach ached, my heart hurt, and I wept for my family.

As I drifted off to restless sleep, I wondered....How long will this worry continue?  How long will Eliah live?  And how long will my strength last? 

Zzzzzzzzzz....Seize....Zzzzzzzzz

When I talked with the Neurologist about Eliah's EEG the other day, he explained that there is nothing really to do right now but increase his current medication and see how it goes.  He did say there were other medications we could try, but most just make Eliah comatose because they shut down too much of his brain.  At least with this medication, his waking hours allow him to grow, learn and develop. 

Also, the next medication to try seems to inhibit platelet function, which would be detrimental to his Hemophilia.  So, we increased his current medication for the 4th time.  Basically, we will keep increasing this medication each time the seizures breakthrough on a regular basis until he is at the maximum possible dose. 

The increased medication makes him sooo sleepy.  You can see it on his face about 20 minutes after taking it, he just can't keep his eyes open.  He sleeps until around noon each day, and still struggles to wake up then.  With each increase, he sleeps longer and longer. 

Eliah had two seizures on the Saturday following the EEG, and Kelley had to breathe for him.  Then another big one last night at Kelley's.  I'm waiting today to see what he's like when he wakes up. 

Also, I just got off the phone with Eliah's Occupational therapist.  They have currently canceled all of his upcoming appointments until they can decide what to do with him.  All of his therapists are concerned that he will have a seizure during a therapy session and they are not properly prepared.  In addition, it's likely a major liability to have them treat Eliah during an emergency.  So, they are currently in meetings and discussions to determine what they can have to be prepared and what protocol to follow. 

I wish there were answers or solutions for my little man.  But there aren't any right now.  We just have to treat him as new issues arise and pray that he makes it through each day.  In the meantime, I contacted Make-A-Wish Foundation to try and help Eliah do something special.  I doubt he will be able to go on any trips because of his complications, but maybe he can get some special needs playground equipment or something along those lines. 

And Now We Wait.....

We've been home from the hospital since yesterday afternoon.  Getting all the electrodes and superglue off Eliah's head was just as traumatic as getting them all on.  He was exhausted from being up all night (me too), and every time he fell asleep in the morning, they wanted me to wake him back up.  It made it so much more difficult.  But, once home, he slept peacefully in my arms.  I napped sitting up, since he wasn't going to let me put him down.

The Neurologist called last night to tell me that he caught one staring seizure on the EEG, but that he wanted to review the full 24 hours and call me either today or Monday to discuss.  And since Kelley has the kids this weekend, I slept peacefully last night.  Well, I basically passed out from mental and physical exhaustion. 

When I awoke this morning, I saw an email from Kelley.  Eliah had another big seizure just a half hour ago, where Eliah stopped breathing and turned blue.  Kelley had to breathe for him.  They seem to be so frequent now.

Eliah has now adopted three types of seizures.  The old kind, where he turns his eyes to the side, his mouth quivers and he stops breathing.  The new kind, where his eyes dilate, pop straight out, his body gets completely stiff, and he stops breathing (like in Total Recall, when Arnold's helmet comes off and there's no oxygen).  And lastly, the kind where he stares to the side and holds his breath. 

All of them are scary.  And the Neurologist was telling me on Tuesday that on his short EEG, the abnormal activity wasn't in the Temporal Lobe like it used to be.  It's now in both Occipital Lobes.  What does that mean?  Well, it means it is affecting the visual part of the brain.  It's likely that when he has a seizure, he sees visions, hallucinations, weird colors and shapes.  It's all probably very scary for him.  And there's about a million possibilities of what could be causing activity in that part of the brain.  Some of those possibilities have cures, some don't. 

We don't currently know what's going on with Eman.  We don't even know if the 24 hour EEG will tell us anything.  All we know right now is that he is getting worse.  We just have to wait and see what the doctor says and what his next step is going to be.   In the meantime, we give our little man lots and lots of love.....and oxygen.


UPDATE:  Eliah just had seizure number two this morning.

EEG Day

We arrived here at the new Epilepsy Unit in the Children's hospital at 9am.  And Eliah had to check out our room. 

After he had a good look, he started getting sleepy. 

Then he kind of passed out....

He soon woke up when they started attaching the electrodes with heavy glue and an air compressor.  It was about 45 minutes of high-pitched screaming.  But when it was over, I got him calmed down and snuggling. 

He's currently playing, snuggling, and eating chocolate chips.  Only 23 more hours!!!

Seizure Update

Eliah had a total of seven seizures yesterday.  His blood pressure was way down, around 80/50 and 100/30 all afternoon.   I talked to the Nephrologist, and they said the low blood pressures were in normal range (although they are not normal for Eliah).

After Kelley picked him up for the night, he didn't have any more seizures, but his blood pressure shot up to the mid 140's.  Personally, I think it's related, I just don't know which is causing the problem, his heart or his brain.  I worry that his heart is weak and not able to keep up, and in turn, not pumping enough oxygen to his brain.  Or, it could be that his brain is haywire and affecting his heartrate.  Which is better?  Neither. 

Eliah's EEG

Eliah had another major seizure last night, where he turned blue and Kelley had to breathe for him.  I think that was the first time Kelley has had to do that, and he seemed pretty shaken by the whole experience as you can imagine. 

We had an EEG this morning at the Neurologist's office. It was not good. Eliah had a seizure as they were putting the electrodes on him, and then another seizure after it was over, as we were waiting for the doctor.

The doctor said that his EEG pattern was not normal and he was concerned. He scheduled a 24hr EEG at the hospital on Thursday at 9am to try and determine what to do from this point. I asked him about the possibility of Eliah dying, and he explained that it is rare, but does happen. He said that approximately one a year from his office dies (which seemed like a lot to me). And he explained that there are children that come in that are better than Eliah, and some that are worse, but that Eliah is at a higher risk of death because his seizures affect his autonomic responses like breathing and heart rate. That's what I was afraid of.

Where's a Psychic When You Need One?

Sometimes I wonder if the troubles with Eliah were caused by Karma.  Maybe I did something in a past life that made things more difficult for me in this life.  Then I stop and think about what just went though my head.  I REALLY think about it.  And when I get down to the core of it, I see that this life, these trials and troubles, and my sweet Eliah are all blessings and gifts.  I was given a very important job. I was given something that not just anybody can do. Well, sometimes I can't even do this job, but I do try my best.

Sometimes it's hard to see that through the stress.  I have had a tension headache for about a week now.  It makes me nauseous and dizzy.  I know I'm stressing over lots of things, like money, Christmas, school for Natalie, and a million other things.  Most importantly, I am completely distraught over Eliah and his current health issues.  Since his episode a couple weeks ago, it feels as if his health is spiraling out of control. Maybe it's just the overprotective mother coming out in me, but I have had a bad feeling that I cannot shake. 

When Eliah had his major seizure, I took his blood pressure as he slept afterward.  He had high blood pressure when he was a baby, but we've kept it under control for a long time.  However, something just told me to check it that night.  It was very high at 149/69.  For a child his age, it should be under 114/70.  But the fact that it was high was not the most disturbing part; it was that the top number (systolic) was disproportionately higher than the low number (diastolic).

So, I began taking his blood pressure a couple times a day for the past couple weeks, and I called the Nephrologist to schedule an appointment.  The doctor was on vacation until this week, but was able to increase Eliah's medication by phone.  (We will be going in today to see him.)

But coming back to the point, Eliah's blood pressure has been quite alarming to me because of the high systolic/low diastolic combination.  I read an article that was just published in October showing the increased risk for heart failure for those that have that disproportionate blood pressure.  And as I read on, it noted the symptoms of heart failure (heart attack)....chest pain, nausea, indigestion, arm pain, headache, etc.  All of which I would be completely unaware how to recognize in a child that cannot tell me what hurts.  

 That, in itself, is so very much stress to think that at any moment his heart could fail and I wouldn't know.  But on top of that, Eliah has begun to have more seizures, despite a large increase in his seizure medication.  (side note: The docs are increasing different meds at the same time and not talking to one another, which now puts the burden on me to relay that information between them)

Kelley said that this past weekend Eliah had 5 seizures, and that most were unusual for him.  When I picked him up this morning, he didn't seem to be "all there", and still isn't himself yet today.  He is awake, but not really coherent.   It almost looks as if he is listening to something inside his head.  Weird.  We are scheduled for an EEG next week to see if the Neurologist will be able to tell anything.

The hardest part for me is the unpredictability of each day.  I see Eliah growing and learning.  He even took five steps in a walker at therapy last week.  He's comprehending so much.  He's happy.  But I feel overwhelmed at the thought of setting him up for school, and testing, and evaluations, when at the same time, I feel like I am just trying to keep him alive.  I don't know how to balance that.  I don't know how to move big steps forward when we are just trying to stay afloat. Will all of that push him too far?  Every day I am thinking, Is this the day he's going to leave me?

I really don't know what the future is going to hold.  And a lot of times I feel like it's too much for me to handle at one time. It doesn't help that I have a bad feeling lingering in my head.  But we are taking things one little step at a time.

Where's the freaking aspirin?

Eliah Looks Death in the Face Once Again

I knew Eliah was going to have a seizure yesterday, I just didn't know how bad it would be.  I had a feeling all day that he was going to seize at some point, so I told the home health aide to keep an eye out.  Around 8:20pm, I was vacuuming my bedroom when the aide came in and said, "I think he's having a seizure". 

By the time I got to the living room, he was in a full grand mal seizure (his whole body).  He was turning from pink to white and was gasping for breath.  I ran to get the oxygen and hooked him up.  Normally the oxygen works within about 10 seconds, but it didn't this time.  I held him in my arms and watched his breathing stop and lips turn a light blue.

My heart was racing and I felt like I was panicking, not knowing what to do.  It wasn't working like in the past.  I pulled him closer to me, and when I did, it pulled the tubing out of the oxygen tank and I started yelling, "Help me! Help me!".  The aide was able to find the end and hook it back up.  I turned the oxygen rate up to hopefully force air into his lungs and brain. 

I looked down again and Eliah's face was blue and his lips were dark blue .  His tongue was sticking out and he hadn't taken a breath in what felt like forever.  Then, as I watched him and prayed for the oxygen to work this time, he went limp in my arms.  Dread washed over me, and I looked at him and thought, "Oh my God, did he just die? I think he just died!" 

I started to put him down; I needed to try CPR and see if I could get him breathing again.  I laid him down and tilted his head back.  And as I was trying to determine if I'm supposed to take the cannula out of his nose, he took a tiny breath...and then another.  I picked him up again and held him close as he started breathing a little more normal.  His color soon returned to pink. 

As I sat there holding him, and now knowing he was okay, it sunk in.  I thought I was going to be sick several times.  But I kept my composure until Natalie was asleep in bed and the aide left for the night.  Then I cried.  Even this morning, I still have a knot in my stomach.  

Natalie was strong last night, but she was very traumatized by the whole thing.  She explained this morning that she thought he had died like I had thought.  And we hugged Eliah tight this morning until he shoved us away and screamed in defiance (which didn't take long). 

I was thinking back over the whole near death experience, and what exactly happened, and what I could do differently.  I don't have a lot of answers, but I did figure one thing out.  The seizure caused him to stop breathing.  When Eliah went limp in my arms, it was him passing out.  When he passed out, it stopped the seizure, allowing him to breathe again.  If feels like Russian Roulette, but if he passes out, it could save his life.  Ugh. 

I would rather not have to do this again. 

Handicapped Parking Etiquette

I was so excited the day I got the Handicapped Placard for the wheelchair van. There's a ramp that comes out of the side of the van, so that I can roll Eliah's wheelchair down. It's awesome. The only problem is, it requires a LOT of room....which brings me to this post.

I don't know if it's true or not, but it seems that many people that have a handicapped placard think that all handicapped spaces are for them. It seems that if they have the placard, they are required to park in a handicapped space, even if there are regular spaces free nearby. It seems that people with a placard think the extra space in a handicapped space is for their bad parking skills. And while some of this may be technically true, it's really not polite at all.

Every day I search for a handicapped space to park the wheelchair van. No ordinary space will do. It has to be large enough for the ramp and wheelchair to come out on the side. Basically, it requires the space of two vehicles. And every day I see compact cars in van accessible spaces, with several vacant regular-sized handicapped spaces right next to it. Every day I see cars parked in the ramp space, not the actual parking space. It's so frustrating.

It also seems, at least where I live, that everyone and his brother has a handicapped placard. I'm not saying they don't deserve it, but it seems excessive when I pull into a Walmart parking lot and all 20 of the handicapped spaces are filled, and I see people that walk without difficulty jump into those cars. There are even people that park in someone else's ramp space, as if it were an actual handicapped space. I've even been unable to get the ramp out, because someone used my ramp space as their handicapped parking space.

Yesterday we went to Walmart, and like other times, every handicapped space was taken. So, we drove around looking for two empty spaces together. When I finally found them, a good distance from the door, we parked and quickly got Eliah out of the van, through the rain, and into the store. By the time we got back to the van, I was greeted with dirty looks from several people for taking up two spaces. I even had cars honking at me, because they needed to park and I was hogging two perfectly good spaces. In the past, I've even gotten a note on the windshield calling me a jerk for taking up two spaces.

So, I am letting all of you with handicapped placards know, that just because you have the placard, it doesn't mean you HAVE to park in a handicapped space. Please TRY to look nearby, or at least save the van accessible spaces, because there may be someone that really needs that extra space. And if you need to park in a handicapped space, please try to stay in the lines.

And So The Summer Ends...

We had a great summer, full of sunshine, swimming, and fun. The kids have been happy, Natalie turned the big 7 in July, lost her first tooth, and she even started 2nd grade this year. And in other big news, I just bought a handicapped accessible house for me and kids. In fact, I just closed 24 hours ago.

We will be moving in next week, and Eliah and Natalie will finally have their own rooms at Mama's house. And I will be looking forward to not have loud neighbors to disturb Eliah, nor have someone try to steal the wheelchair van (yes, that happened a month ago).  It was a long road to get this house, but luckily, all obstacles were taken care of, and we are but a mere 5 miles from Kelley's house, which was much harder than you think to accomplish.

Eliah has had some seizure issues this summer, but we have been working with the Neurologist to get that resolved. We have almost maxed out our dose of his experimental seizure med, and unfortunately that leaves us with the same old ones that don't work. I'm hoping Eliah can hold it together (through the current virus he is fighting) and not have too many breakthrough seizures in the coming weeks.

So, there are some BIG changes for us in the next couple weeks. I'm also hoping that life will calm down a little bit, so that I can start feeling more organized and less stressed. Ha, like that will happen. :)