eliah james

Do You Believe in Angels?

2012-01-24T10:50:00.002-05:00

Since 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 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?

2012-01-20T08:37:00.003-05:00

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

2011-12-14T10:15:00.005-05:00

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.....

2011-12-03T09:47:00.001-05:00

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

2011-12-01T12:21:00.003-05:00

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

2011-11-30T08:51:00.000-05:00

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

2011-11-29T12:59:00.000-05:00

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?

2011-11-21T09:39:00.003-05:00

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

2011-11-04T08:22:00.000-04:00

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

2011-10-11T16:35:00.003-04:00

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...

2011-09-01T16:39:00.004-04:00

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. :)

What's So Great about Four?

2011-05-31T08:38:00.001-04:00

Well, another year has come and gone, and I feel like I JUST wrote Eliah's 3rd Birthday blog post. Where does the time go? I am watching my children grow by leaps and bounds as time flies by at record speed.

Eliah is now FOUR YEARS OLD! I remember being frustrated and depressed when he turned two. I was so upset that I had a two year old that could not sit up, crawl, speak, or even sleep well. And I remember being frustrated when Eliah turned three, and the update didn't seem any different. My feelings have changed this year. Can he do everything? Nope, not even close. But it doesn't matter. Every day he grows and learns, and most importantly, Eliah is happy.

As you will see by the pictures, Eliah has grown a tremendous amount this year. He weighs in at 40 pounds, and is as tall as a five year old. He sleeps through the night, and just as of this week, is able to get himself to sleep. I just tuck him into bed, kiss him good night, and he drifts off to dreamland.

Eliah's brain is working overtime trying to catch up. He does his army crawl with great speed, and can cross a room in the blink of an eye. He is always exploring and getting in to mischief. He crawls to the movie shelf and takes all the movies off. He crawls to the kitchen and opens the kitchen cabinets. He crawls to the sunroom and takes everything off my display shelf. And he opens dresser drawers to sneak a hand inside. Sneaky boy.

Eliah still loves reading books and wants to read all the time. We read 5-10 books a day to him. And he has even mastered turning the pages by himself. His timing is perfect.

He comprehends so very many things now. He can wave hello or goodbye. He gives high fives. He activates all his toys by himself. He can feed himself if I hand him a fork or spoon. And he is able to roll his wheelchair on his own (only a couple times). Most importantly, he understands what I say, and can communicate back to me with facial expressions, movement, or sound. It is wonderful. There are always frustrating moments, like when he is hurting and I do not know what it is. But for the most part, I know him and what he needs.

He has been doing well overall, with only two small seizures since February, and they seemed to coincide with growth spurts. His new medication seems to be doing the trick. It also seems to be the source of what is allowing his mind to grow so much more. All the other seizure medications tend to shut down his brain and make things foggy. This new one, Vimpat, is still new to the market and less than 10,000 people are on it. We are loving it.

Eman also got his new orthodic shoes (Mama calls these my magic shoes), since he grew out of his old ones. Only $2300 later, and he was able to get back in his stander after a five month break from standing. He loved it so much, he spent 25 minutes enjoying the view from a grown up perspective. However, we MAY have a set back. Eliah has developed his largest bruise to date on his shin, and I am thinking he may have gotten a small stress fracture or fissures from standing too long. I will be calling the doctor to see what it is. But that would be a small setback in the grand scheme of things, and we WILL get this little man walking one day.

School is out this week for Natalie, so we will be spending our days playing by the pool, going to the zoo, reading at the library, and traveling. It is going to be a great summer....year....life.

Spring Fever

2011-04-13T09:24:00.004-04:00

Spring has sprung, the grass is green, and we are on the move. Since my last blog post, Eliah had an increase in his seizure medication, and we seem to be doing better. He has had one seizure (last weekend), and he was able to come out of it with just oxygen. Overall, we are better prepared and able to move on with the business of life.

The weather has been beautiful and we are enjoying all that Spring has to offer. Natalie is completely hilarious. She is on a mission to stick her finger in any nose that will impress her friends (and get her on the Ellen Degeneres show). And Eliah wants to be in the water so badly, I believe he is determined to be a fish. They are happy and full of love.

I have also modified Eliah's wheelchair for the summer months. I was having difficulty with keeping Eman in the shade with an umbrella, carrying the oxygen, and pushing the 100lbs of Eliah and wheelchair combined. Anytime we walked anywhere, I looked like I was in a fight inspector gadget. So, this week, I added a removable/reversible sun shade, removable straps to hold the oxygen in a safe place, a velcro-ed fan to keep Eliah cool (I can also put his "pick up lines" button there), new, yet the same wheelchair covers, and I made a new waterproof storage bag that snaps under the chair. We are now organized and cool. You can see Eliah's enjoyment of the fan in one of the photos above.

Our setbacks only slow us down, they do not stop us. Natalie and Eliah are having a great childhood, and we going to have a great spring! See you soon!

Too Much Fun Linked to Near Death Experience for One Little Boy

2011-02-28T10:38:00.011-05:00

Do you know what it's like to never let your guard down? It's impossibly exhausting. After yesterday's event, I am once again feeling mentally worn down and overwhelmed.

I decided to take the children to a park, just recently discovered by Kelley. It's just a few miles away, and it's a playground for all children of all abilities. There are areas for wheelchairs, swings for children who cannot sit up, and activities at the perfect height for those in a wheelchair. Eliah was so excited to be able to participate.

It was perfectly sunny and 77 degrees when we went to the park. We played for an hour or so, and as the sun shone down it's midday heat, we opted for a cooler spot....the mall. We got Icee's and soft pretzels, and then strolled up and down the corridors, looking in the shop windows. Eliah had already had his nap for the day, so he was full of energy and curiosity.

As we drove back from the mall, only a two mile drive to my apartment, Natalie and I talked about all the great things we saw and did. When I pulled into my apartment complex, I heard a small snort. I looked back and saw Eliah with his head down on his wheelchair tray, his arms out to the sides with his hands in small fists, and his head was slightly bobbing. I stopped the van, and leaned back, lifting up his head. I knew he was having a seizure. I think the day's activities were too much stimulation for him.

Just as I realized what was going on, he stopped breathing and his lips began to turn blue. Do I try and drive the 50 yards to my apartment and get the oxygen? Do I leave the van in the street and help him? I didn't know what to do, so I put the van in park and jumped out, Natalie ran over to hold his head up. I opened the door and jumped in the back of the van. He was still not breathing, lips dark blue, and I panicked. Do I take him out of the wheelchair? It would take too long, so I started hitting his chest with my palm and breathing into his mouth.

I looked up and Natalie was holding his head up with one hand, and her other hand covered her mouth, as she stood there terrified. I kept breathing into his mouth and yelling, "Breathe, Eliah, breathe!". I stopped and looked at his chest to see if it was moving, and all I could see was a vein in his neck throbbing wildly, but no movement in his chest. His lips started to turn blue again. So I began pushing on his chest and breathing into his mouth again.

After about two minutes of doing this, he seemed to be breathing sporadically. So Natalie stood there and held his head while we drove to the apartment. I got in and unintentionally floored it, and poor Natalie was thrown to the back of the van. But she jumped up and picked Eliah's head right back up. We were both shaking and knew we had to hurry.

I pulled into the space and Natalie jumped out with the keys to open the apartment. I tried my best to get Eliah out of his wheelchair as quickly as possible. It is not a fast process, as there are 8 different straps. I picked him up, and as I carried him into the apartment, I looked down at his limp body. His lips were white and eyes were cast to the side.

I set him down on the floor, and put the oxygen on his face. He sprung to life with a startle and fought me with every effort to put the cannula in his nose. Natalie stood with both hands over her mouth, frightened and shaking. I tried to reassure her that he would be okay (I was telling myself at the same time).

I finally got the oxygen secured to Eliah's face, and he fell fast asleep. Natalie also fell asleep, sitting straight up, clenching her stuffed tiger tightly. And there I was, left in the wake of what just happened. I was in shock, my heart racing, and feeling like I was going to throw up. Even today, I am still very shaken by the possibility that my son was about to die yesterday.

There is no point in going over all the "what ifs" in yesterday's situation. Sometimes I do wish that my concerns only lie in what I would wear on the red carpet. But other times, I know that parents are chosen by God for a reason. It's just that today, I am feeling very burdened by the weight of this enormous responsibility. I couldn't even find my keys this morning, and eventually found them still in the door of the apartment. Luckily, nobody had taken them.

What a Difference a Port Makes

2011-01-14T08:51:00.003-05:00

Eliah is doing well with his new port. It's hard to believe that he's had it for three weeks now. What an intimidating but easy road that was in getting a new port.

I had some concern, based on Eliah's reaction to his infusions, that he might have a leak in the new port. But just yesterday, while at the doctor's office, Eliah laughed and the doctor told me I'm crazy, so all is well. I'm just going to chalk it up to behavior and stress on his part.

Here's the great news. All of the issues Eliah was having with his left arm have been resolved now with the new port in place. He is able to reach, bend, grasp, and do whatever he needs with his arm. The pain the leak was causing, hindered his ability to move properly. But he is back on track now with pressing his talk box at therapy and working toward new goals. Whew!

Now we just need to tackle some leg issues, get new "magic" shoes, and adjust his stander, and we should be back on track there too. It will take a lot of time and a lot of work, but I think E-man is up for the challenge.

We've been having a great time with Christmas, the snow, and no school for Natalie. We spend our time dancing, laughing and baking. And I'm even in the process of looking for a house to buy. Things are looking up.

Early Parole

2010-12-23T12:51:00.002-05:00

Eliah is being discharged TODAY. They said they normally keep kids 5-6 days after getting a port, but he is doing so well, and they trust me to manage him at home, so we are leaving in an hour(ish). YAY!!

I will need to give him a large dose of clotting factor twice a day for the next several days, then go to once a day. By next week, he will be back on a regular schedule, and hopefully all healed up.

You would never know he had surgery

2010-12-22T22:24:00.000-05:00

The Surgery

2010-12-22T15:16:00.000-05:00

Before Surgery

Heading into OR


Recovery Room

Eliah's surgery went well. The same doctor that did his original port was the one to put this in place. He said that Eliah's tissue looked really good, and he was able to put a new one in the same side. The doctor said that the port is a little larger and should be able to grow with Eliah a little better. But I'm sure it will take some getting used to.

Eliah was anxious and upset before going in. He didn't sleep all night due to the doctors and nurses entering the room, and numerous needle sticks to check clotting factor levels. The good news is, Eliah's levels remained high and acted no different than anyone else having surgery.

He is resting calmly now with Morphine, and has even eaten a little bit. He seems to be okay for the time being. I will update more as he recovers. Thank you so much for the thoughts and prayers. We ALL appreciate it.

The Port Images....and leak

2010-12-21T11:35:00.000-05:00

The first image is what Eliah's port looks like. It has a catheter that runs through his main artery to his heart. The second image shows the tiny leak in the top of the catheter, where the bend is. It's minute, but it's there nonetheless.

Unexpected Surgery

2010-12-21T10:21:00.002-05:00

I am glad that I know Eliah so well. He's had his port for over two years now, and I've been doing his shots five days a week. I feel like I know what to expect and how he responds.

Friday's shot went bad. There was blood everywhere, Eliah was screaming, and I even had to hold him down with my knee to finish it. Sunday came and I was nervous about doing the shot again. Same thing happened. So I called the doctor on Monday.

I took him to the Hematologist so they could do his shot and take a look at his port. It was like a car that makes noise until you get to the mechanic. It went smoothly. He didn't scream, and there was no issue with the needle. But to appease me, they ordered a Portagram (xray of his port with dye contrast) for today.

They took the xray and did discover a tiny leak in his port. Had it gone on longer, it would have damaged the tissue in his body. It has to be replaced.

We have to bring him back to the hospital in just a few hours to be set up in a room, and surgery will happen tomorrow. With Hemophilia, he will have to be on a constant drip of his clotting factor during surgery so he doesn't bleed to death. Hopefully, Eliah has not developed inhibitors to his clotting factor (immunity). That would be a worst case scenario.

What I'm worried about is where the port will be located. It's possible that it will go in the same spot he currently has it. But if they can't, the port may have to be placed on the other side of his chest. In that case, he will have two incisions, one on each side of his chest. I am already sick to my stomach over the pain I know he will be in.

I will post the xray when I get a copy. And I will update as I can.

Forwards....Backwards....Sideways...in Circles

2010-12-10T20:19:00.002-05:00

I am coming full circle (again) with my feelings about Eliah and his progress. It seems as though the good always outweighs the bad, but there is always something new on the horizon to complicate Eliah's situation. We get two steps forward, one step backwards, and a couple to the side. And I feel like I need to write this blog post, not just as an update on Eliah, but as a release for my feelings. I'm frustrated.

In the past month and a half, Eliah has had two seizures. Normally we are taken by ambulance to the ER for them to stop the seizure. But these past two times, Eliah has stopped within five minutes. We still call an ambulance, and we give him medication and put him on oxygen, but he came out of the seizures each time without going into another one. That is HUGE progress.

The bad part is, in the past month and a half, Eliah has lost a lot of his motor skills. He has a great deal of difficulty when rolling now, sometimes not even rolling at all. He is only able to use his left arm occasionally. He has not even been able to bring his hand to his mouth, as he has for the past 2+ years.

This past February, I posted a video of Eliah using a talk box in therapy. He presses a large button to play a recorded message. He's been doing that for a year now. Unfortunately, just in the past month, he has lost the ability to reach and press the button. You can see in his eyes that he wants to, he just cannot get his body to move.

In addition, Eliah's muscle tone has increased. His leg muscles are getting extremely tight, and he is developing what's called "wheelchair legs", where he cannot straighten his legs while in a sitting position. This will hinder his ability to stand.

Eliah has also lost the ability to wear his orthodics (magic shoes), because just wearing them leaves bruises and pulls on his muscles too much. Therefore, he has been unable to use his stander at all, further hindering his possible standing/walking one day.

I talked at length with his Physical Therapist today, and she suggested that we try a medication called Baclofen to help relieve some of the tightness in Eliah's muscles. And it could really help him. The downside is, that because he has no torso control or strength, it will make it harder for him to learn to sit up. But I guess we will cross that bridge when we get to it.

In addition, his therapist wants to give his Physical Therapy a "break" in the spring. Meaning, he won't get any physical therapy for approximately three months, then go only every two weeks. And from the impression I got, she's been working with him for three years now, and his progress is minimal (and some backwards), so he may not benefit any more from a weekly therapy session. This was very discouraging to me. I guess in my opinion, I feel that we need to do EVERYTHING possible to get him working right. I was hoping to go two times a week, not the other way. But, as his therapist said, plans can change. Hopefully they do.

On a positive note, Eliah's blood pressure has been down to normal levels with medication. He had an echo cardiogram at the beginning of November to determine how much his heart was strained by the hypertension. We are still awaiting the results of that. The bad news is, Eliah still has his heart defect. The cardiologist was hoping that it would resolve on it's own as he grew, but it's still there, and most likely the cause of the hypertension. Normally, the course of treatment for his defect is to operate, but because Eliah has Hemophilia, they are really at a loss of what to do. They don't want to cause new bleeding, especially around his heart. We'll see what they say though.

More good news is that Eliah is sleeping almost 8-9 hours every night. There are occasional hiccups, but for the most part, he is being consistent. The new bed is working like a champ too. I like that it's big enough to sleep in there with him if he's having a bad night.

The kids are doing awesome with the separation. Natalie is testing limits at both houses, which is expected. But I think she always tested limits. Ha! And Eliah loves having the change of scenery and toys. It keeps him from getting bored.

And you can see by the pictures, the kids are growing like crazy. I can't believe that Eliah is almost as tall as Natalie. She is a normal-sized 6yr old, and Eliah is ONLY 3! That kid is going to break me one day. I better work out harder in preparation. :)

I know we have bad days, both Eliah and myself. Sometimes he's in pain, and he just cannot tell me what's wrong. Sometimes I do everything I can possibly do and it's still not enough...... And sometimes there are days we just laugh, love and dance. I live for those days.

That's pretty much it. Eliah is better, worse and the same. I love him like crazy. And I'm so very proud of BOTH of us for being so strong.

New Beginnings

2010-10-02T20:01:00.005-04:00

As some of you know, and for the rest that do not, Kelley and I separated a few months ago. We get along great, and we are both loving, understanding parents still. We just agree that we will be better parents if we are apart. There is no negativity between us, and since I have moved to an apartment, the children are feeling at ease in both homes. Kelley and I each get much needed breaks from the children (and sleep), and the children benefit from our devoted attention to only them.

Since Eliah is getting too big for a crib, and we now need two beds, I had to come up with a way to keep him safe. With the help of my friend Brenda, and Kelley, I took a twin bed on a platform, and turned it into an adult padded crib. (Picture above) The first nap in it, Eliah slept for four hours. He loves it, and he loves that he is a "big boy".

In addition to (me) finally getting some sleep after three years, I finally figured out Eliah's screaming. For months, Eliah would act like he's hungry, take 2-3 bites of food and scream for 20 minutes. Sometimes he eats afterwards, sometimes he skips several meals. I have been racking my brain trying to figure it out. We thought it was a toothache, and took him to the dentist. We thought it was a sensory issue, and we did brushing therapy and joint compressions before meals. We just didn't know. Then Friday we took a trip to the Neurologist, and when they weighed him, I realized he was down two pounds in the past few months.

So, with a clear head (and Google), I realized that even though Eliah was on Zantac (and has been since birth), it's never been adjusted. The Hematologist suggested we wean him off last year, but Eliah screamed too much, so we just left it at the same amount. When I called the Pediatrician about it two days ago, he said that I was right and Eliah is showing all the symptoms of GERD (reflux disorder), and needed much more Zantac.

You would NOT believe the difference. After a new dose, he ate more lunch than I did. He has been eating breakfast, lunch, dinner and snacks, and he is eating healthy foods. He has never eaten so much...and he has never been so happy. No more screaming, with exception of the normal toddler hissy fits. He plays by himself and explores, and the doctor said he will start sleeping better through the night too. We had no idea.

The amount of stress on me has reduced ten fold. Because Eliah is a different child, I feel like a different person. And hopefully he can now focus on growing and developing. No more pain for my little man.

It's a great new beginning for all of us.

Good or Bad?

2010-08-24T08:36:00.003-04:00

It's funny to me that the people that are "officially" there to help me are the ones that make me realize how bad we have it. For the most part, I am used to what I deal with on a daily basis with Eliah. I don't think twice about it. I focus on what he can do. I try my best to be a good mother and keep him happy. And I "go" until he sleeps.

The past couple weeks have been kind of eye opening for me. First, the school screening Eliah "participated" in, was concluded with a piece of paper that said Eliah is delayed in all ways. No kidding, I knew that. Then I got an evaluation on Eliah that determines his age in months, based on what he can do. It's broken down into several categories, such as, Fine Motor Skills, Communication, and Self Help. I knew he was delayed, and I knew he was far behind, but I guess I never really knew HOW far behind. In some categories he scored at a five month old level, and some he scored slightly higher. His receptive communication was the highest I believe, at a 21 month old level. It's very defeating to see it in black and white. And I didn't expect that feeling, because I already knew he was delayed. It's not like I'm living in denial.

Then, over the course of last evening, my friend told me that I have the patience of a saint, and my new aide commented, "How did you do everything before an aide?" and "Wow, he is a full time job". And I look around and think "This is a normal day". I don't know what everyone is talking about. This is what life is like. I must have been removed for so long that I have no idea what it IS like to be normal. Do I even want to know what I'm missing?

I take each day as it comes, loving my children and teaching them how to be happy. Everything I do (for them and myself) is based on a great deal of thought. Life has always been full of challenges for me. Each trial giving me strength, experience, and an understanding that things do not always work out the way we plan.

Eliah was given to me because God knows that I will love him like nobody else can, because I value his precious life. I know what it's like to lose a child and a mother, and the hole it leaves in my heart as the anniversaries of their loss approach.

God knows that I will always love Eliah. God knows that I will always want him. That I will always be proud of him. That I will never fail him as long as I am alive. And that no matter how bad it gets, no matter how much he challenges me, I will never regret him.

The thing I realize most is, life is short. I don't want to look back on my life and regret not having the courage to stand up for myself or my children. Things will always happen beyond my control, but it's my choice in how I deal with it. It's not okay to just get through life, it's got to be great. I have to MAKE it great. I don't take a minute for granted, and I look to the future with hope.

Up or down?

2010-07-22T20:59:00.013-04:00

My sister came to visit this past weekend. We were all having a great time and enjoying each other’s company on Sunday evening, but I knew that Eliah was not feeling well. He was starting to get a fever around 7pm, so I knew to watch for a seizure. I was trying desperately to keep him engaged and focused on something. He was wincing in pain, which I took to mean his stomach hurt, and he suddenly looked at my computer (as if watching a video), and I knew. That was when I told everyone he was having a seizure.

Chaos ensued as Kelley ran to get the oxygen and dressing supplies for Eliah’s port. Suddenly, Eliah vomited everywhere, and we tried to clean it, access his port, put the oxygen on him, and call EMS for an ambulance all at once. I’m sure we made a great impression to the new neighborhood (we bought a house finally) when the fire truck and ambulance made their appearance on our small cul-de-sac. As I carried Eliah to the ambulance, I noticed a small crowd of neighborhood children on the corner, wondering what was going on.

I spent the next fifteen minutes in the ambulance answering the same questions and requesting the same procedures to be followed. The Neurologist has indicated that due to Eliah’s history with certain medications, we are to treat his seizures with Phenobarbital. It must be done in the ER, and it must be done within 30 minutes of the onset of a seizure. Any longer, and the seizure could damage his brain. So I am sitting in the ambulance, as the EMS tech is on the phone with the ER, explaining that they need to get the Phenobarb ready.

We got to the ER and people flooded the room as Eliah laid on the table convulsing (see video). Finally, after fighting with the doctor to only treat with Phenobarb, she agrees. It has now been an hour since Eliah’s seizure started. As the doctor figures out the dosage, I suggest that she only try a half dose because of his blood pressure being erratic. She sneered, but agreed. The nurse slowly pushed the half-dose of medicine into Eliah’s port. (Side note: this medication is only to be administered over a 20-30 minute drip) Meanwhile, a new nurse was attempting to give him an IV, of which he does not need because he has a PORT. And another nurse was drawing labs from his port, but got the blood clotted in the line.

As quickly as it started, Eliah’s body went limp and the seizure stopped…..but so did his breathing. The doctor put the bag on Eliah’s mouth and began breathing for him. My heart stopped.

More people filled the room, calls to the PICU (intensive care unit) and respiratory began. I was frantically trying to re-access his port and keep Kelley updated through Facebook, since he was still at home with my sister and our daughters. Amongst the frenzy of activity, I looked up and it was so surreal. I thought to myself, “Is this it? Is this the time Eliah doesn’t make it?” There was nothing I could do but watch, with one of the nurse’s arms around me, I held my breath.

Thirty minutes went by, the doctor squeezing the bag, filling Eliah’s lungs with oxygen, until finally Eliah gasped. He coughed and we all let out a sigh of relief. He was going to be alright.

We spent the rest of the night and the next day in Intensive care; watching his fever go to 105, then back down, without really discovering why. Within 24 hours, we were home and he was back to himself. I went back to entertaining my sister, and all was back to normal. Natalie even turned six amidst the drama.

The only difference today is that Eliah has taken about five more years off my life. It will not be long before the lines on my face tell the cumulative story of all we have been through. I carry every single moment of Eliah’s life in my mind and heart, and there is not a day that goes by that I am not thankful to see his smile one more time.

Here's your broken kid.....

2010-07-02T12:13:00.007-04:00

That's what I feel like everyone has said. I don't know anything about having a child with special needs. This is all new to me. I don't magically know all the right things to do. I don't know all the possibilities for things that can help Eliah.

We were visited by Early Intervention this week to discuss school now that Eliah is three. We were told our options are to either put Eliah in preschool five days a week, six hours a day, with no nurses, or we could have Home Bound school where someone comes to the house for an hour a week to "teach" Eliah. How can his medical/sensory needs be met in a preschool with no nurses? And how can he learn in one hour a week at home? Guess what, those aren't our only options. We can fight for private placement with a nurse at his side.

You know what, that's fantastic. But it took someone (my sister), who works in the school system, to tell me that I have that option. How would I have known otherwise? Where are the people that are supposed to be telling me these "inside" details? What else are we missing out on?

I feel like I am always in the dark, feeling my way around, and occasionally stumbling on something useful. I feel like nobody (especially doctors) wants to take responsibility for going outside the norm, which is what Eliah needs most of the time. At five months, the Neurologist suggested that we not get Eliah vaccinated due to his seizure disorder, and because of his Hemophilia, couldn't get them intramuscular anyway. We did what he suggested. Now Eliah cannot go to school or daycare without the vaccinations. None of the doctors, three of them, will sign a medical waiver because of liability.

The Neurologist, striving to be on my sh*t list, agrees that standard medication and treatment does not work on Eliah, but refuses to try anything new because of liability. He is going to refer us to another doctor, hours away, that may or may not be willing to try something new. Why does it always have to be difficult?

We have obstacles every day like this. The runaround is so frustrating. For example, Eliah is running a fever this week. He feels horrible. Who do I call? The pediatrician doesn't know anything about Eliah's medical conditions. He is not an expert with Hemophilia or Cerebral Palsy, or sensory disorder for that matter. But I can't call the Hematologist unless his fever is 102, cause then it may indicate a port infection. Usually by then, Eliah has a seizure. The Neurologist is who to call for a seizure, but he doesn't treat fevers. So, my hospital bags are packed, and I am just sitting and holding my little man.

I am frustrated that the doctors don't talk to each other, or to Eliah's therapists, to come up with a best course of action/treatment. I have to tell each doctor what another has said. Is that really the BEST way? I am frustrated that the programs to help Eliah remain "secret". And even when I am told things, that doesn't mean I know what they are talking about. I don't know programs or forms by their acronyms, I am new to this. There is no class on being a special needs parent. I am frustrated that I am just supposed to know everything. And finally, I am frustrated for all parents that have to go through the same thing.

Turning Three- Running to Stand Still

2010-05-17T16:47:00.004-04:00

Eliah turns three on May 28th. He is 42inches long, and weighs in right at 35lbs. He sleeps from approximately 1am-6am, and naps for two glorious hours a day. He screams/cries about 45% of the day, with laughing/playing/exploring coming in at 35%, and blank stares around 20%. And all of it is mixed together in one, big, bi-polar mess throughout the day. I have a big baby on my hands that wants to be picked up as soon as he is put down, and put down as soon as he is picked up. He has temper tantrums and loves to snuggle and get hugs.

Sadly, I could easily copy and paste Eliah's Second Birthday blog post here. Nothing has changed since then. His major milestones this year consisted of learning to roll and drinking through a straw (although not at the same time). I completely understand the statement "running to stand still" in depth now. Every day is a struggle just to maintain what we have. To give you an idea of what I/we think about and handle every day with Eliah, I wrote some things down.

I am under constant pressure to make sure Eliah gets medications on time, including his shots and checking his blood pressure…..to hold Eliah until he falls asleep every night, and get as much sleep as possible in that time, as well as eating and showering as fast as possible because he is crying for me to pick him up….under pressure to get him to talk before the age of five, or he will never talk….to get him walking or crawling as soon as possible.

I constantly worry about: Why is he crying? Is he in pain? Is he bleeding internally? Is he about to have a seizure? Are the hospital bags packed? Are the oxygen tanks hooked up? Is his blood pressure too high? Is he about to have a heart attack? Is he about to have another stroke? What can I do to help him? Can my back handle picking him up for the 50th time today?

But there is also good that surrounds the pressure and worry. When Natalie and Eliah laugh, the world is right. I am always trying to find ways to have fun and make them laugh. I want them to have happy memories of their childhood, not worry. I have always told Natalie, "It's my job to worry. It's her job to have fun". And I do everything in my power to show them how to love, laugh and have fun.

There is definitely hope for more improvements for Eliah in the future as well. New medicine and new technology is around the corner. Maybe more programs will be available when we move. There's always hope that something will "click" in Eliah's brain, and things will start happening. Now when I look at things Eliah does, like one of his fingers twitches constantly, I am thinking, "there is one little tiny part of his brain that is making that happen". I love having that perspective, and seeing it objectively, without fear. He has so much potential, so much life inside him, so much personality, and is so much more than just a kid in a wheelchair.

I questioned my friends a while back about how to deal with disabled people when they passed by. What do you say? How do you act? I've never been around special needs people, so I really didn't know. And now that I have experience with Eliah, I wanted to share what I like best when people pass us by. Children have the right idea. They ask, plain as day, "What's wrong with him? Why is he in that chair? Why can't he walk?" It's simple questions and it's a pleasure to answer them.

I stopped by Natalie's school the other day with Eliah. And children wandered out of a 2nd grade classroom to look at Eliah, and I was bombarded with questions. I loved that they were not afraid to ask. I loved explaining things to them. I love the curiosity without feeling sorry for him. And within a minute, the teacher came out and said, "Oh my goodness, I'm SO sorry they did that to you." And then she cocked her head to the side and gave me the pity look.

I don't want pity. I don't want sympathy. This is what we were given. I don't take a moment for granted. I love, hate, cherish and look forward to every single day, and what it will hold for Eliah. I love what I have learned by being the mother of such a special boy. I am proud to be his mother.

It's been a long road over the past three years. We're blessed Eliah lived through the first year, much less got to sit in a wheelchair on the beach at the age of three. We still have a long road ahead of us. But we'll get there, someway, somehow.

Happy Birthday, Eliah.

Who knew parenting was so hard?

2010-05-04T15:38:00.002-04:00

I struggle every day with "What more can I do? How can I help Eliah get better (and scream less)? How can I make Natalie feel special without spoiling her? How can I include Eliah in activities that Natalie does, and will those activities put him in sensory overload?"

Last week, we were in the hospital for another seizure with Eliah. I got so caught up in the seizure, ambulance, and hospital, that I forgot to tell Natalie good night and kiss her. I felt guilty all night. I felt guilty that I can't be in two places at one time. It's not fair that we spend so much time on Eliah and not on Natalie. And at the same time, it's not fair to Eliah that Natalie gets to have all the fun (go karts, ferris wheel, playgrounds). What is the answer? Is there even an answer?

When Friday came, we sat around and thought "What is something that we can do for dinner that would be different?". What we decided on was a weekend at the beach. We packed up then and there, and drove East.

It was a combination of giving the kids an adventure and just taking a moment to breathe. Although, not a typical vacation by any means. Eliah still requires a large amount of time and attention. But we were all doing something we enjoyed, spending time with each other. And for a brief amount of time, that's all we focused on.

Is life perfect? Hell no. Is life anything close to what I expected? Hell no. But I don't have a choice. I either have to embrace what I have and make the best of it, or I can give up. Giving up isn't really an option, because I don't trust anyone else to care for my children better than I can.

And I freely admit that I don't know what I'm doing. But I'm trying.

Eliah in Intensive Care

2010-03-16T15:35:00.006-04:00

Saturday brought some drama when Eliah started having a seizure after a family trip to the mall. We rode by ambulance, sirens blaring, straight to the emergency room, where I was met with familiar faces and the same million questions.

This time, due to Eliah's behavior earlier in the week, I was concerned that he may have new bleeding on his brain, so we did a CT scan. To my relief, his brain remains in it's normal broken state. We also did a chest x-ray, and determined that Eliah's pneumonia has finally cleared up after three long months.

We were admitted to PICU for observation overnight, and expected to go home by morning. Meanwhile, Kelley was getting sicker and sicker by the minute, remaining home to contain his germs. By midnight, I was awoken by a nurse clad in mask and plastic coat, telling me that Eliah had strep throat.

Sunday morning Eliah woke with a smile, and immediately started into another seizure. Then as soon as we got that one stopped, he started another one. Which led me to the question, Will this ever end?? Will he ever stop having seizures?

The doctor explained to me that there are children that have febrile seizures (a seizure from a fever), that grow out of it at the age of around six.....and then there's Eliah. She went on to tell me that Eliah has Epilepsy (a generic term meaning that he is prone to
seizures), and that fevers are just his trigger. Will he grow out of them? Probably not. He may not have as many as he gets older as his immune system does it's job. But we will always have to go to the hospital for them.

Because Eliah is "quirky" with medicine, we have to head straight to the big guns for knocking the seizures out when he gets them. The regular avenues just anger and agitate him, making the situation worse by increasing his heart rate to stroke levels, which we learned by experience this weekend.

At least we have a plan of action now. We know what to do, we know where to go, we know what to use, we know who to talk to. There's definite comfort in that.

Anyway, today, after three days in the hospital, we are home and Eliah is resting. He's weak, but back to being "Eliah". And we are thankful for all the love and support that we always receive from family and friends during these times. And a special thanks to
Kelley's dad for bringing me Starbucks and Subway Cookies, without, I would not be sane.

February Eliah Update

2010-02-27T10:32:00.009-05:00

Eliah seems to be progressing at rapid rate. Although our milestones are small, there are many. Eliah is working very hard to catch up physically, and his frustrations tell me that he is eager to do new things.

One thing I constantly have to remind myself, is that Eliah is so much smarter than he outwardly shows. He knows colors and shapes, and knows music so well that he gets mad if I sing the wrong words. He craves to learn. We read at least 10 books a day to him, and he just can't seem to get enough. I keep a running dialog going with him at all times (and yes, I look ridiculous in public). But he loves it,and has himself become more vocal. He is not saying words, but he is trying so hard to get his points across verbally (lots of different kinds of screaming).

Eliah has learned one sign, "more", and uses it quite often. As well, he is learning how to use talk boxes to interact with us. We record a statement like, "Eliah wants juice" on the talk box, and he is able to press the button to say what he wants. Here is a video of Eliah using a talk box to sing a song with this therapists.

Also, Eliah received his wheelchair in January, and he is a boy on a mission. We ALL love that eating out and shopping have become easier. Eliah loves that he gets to sit at the table with us like big boy.
Since he has gotten the wheelchair, he has been able to feed himself (some), and he has just learned to drink from a straw. Here is a video of Eliah feeding himself a Popsicle (this was the first time he has fed himself)

Eliah is trying, with great effort, to go places. He's learning how to operate his wheelchair; some days are better than others. Here is a video of Eliah at Physical Therapy yesterday, trying, with great frustration, to get his wheelchair to go.

He is also rolling on his side, around the room, to get places and to get to the toys he wants. He has found a way to get "some" forward motion, like an army crawl, as well. I know he feels such accomplishment when he successfully gets where he is going. The only setback thus far has been his stander. He loves to stand in it, but after only twenty minutes, his feet develop a blood spot on each heel.

With Hemophilia, he is more likely to bleed in spontaneous ways, and although we don't know the cause, his heels bleed every single time he is in the stander (even right after his shot of clotting factor). We are going to try new ways to work around this setback, as it takes two weeks for the bruising to go away, and he will never learn to walk or stand with so little time in the stander. But we are confident that we will find a way. And I know Eliah is determined enough to make it happen one way or another.

Ultimately, Eliah seems to be so much happier in general. We spend a lot of time laughing, playing and learning. Considering what we have been given, we are making the absolute best of it. I couldn't be prouder of my little fighter.

Christmas 2009 (Eliah's year)

2009-12-24T11:31:00.006-05:00

Another year has come and gone, and we find ourselves in new places with new adventures. Eliah is doing well, growing at a rapid pace and filling my heart with love. We spent a few days in Intesive Care in November due to a stubborn seizure, but as always, Eliah awoke with a smile on his face. He is a happy boy, full of light. Both of these children are such graceful gifts.

Natalie is growing into a beautiful young lady, strong with her studies in Kindergarten. She has an incredible personality and sense of humor, that keeps me in stitches. And as you can see by the picture above, Natalie is showing off our new (temporary) apartment.

We have sold our two story house, in the hopes of buying a more disability friendly house for Eliah. He is getting heavy, and it is becoming more dangerous and strenuous to carry him up and down stairs. We anticipate Eliah walking one day, but need to prepare for the possibility that he won't. He is working hard though.

Eliah received a new stander a couple weeks ago and it is such a blessing. He loves to stand and play, zooming down the hall at record speed. And with each minute, building strong muscles to help him learn to stand and walk on his own one day. We are also expecting a self-propelled (meaning Eliah-propelled) wheelchair in the first week of January, so we can go even faster. It's going to be an exciting year for Eliah.

It's so much fun to see Eliah and Natalie blossom, as it makes this Christmas much more fun. Natalie has received one present early (see the pictures above). And my heart just melted to see the look on her face. Eliah is just happy that Kelley has bought enough batteries to play with the toys he loves already. :)

Anyway, I can honestly say, even with a few briefs moments of frustration, it's been a wonderful year for our children. Next year I get to add my own chaos to the mix. I am starting a new business, helping other parents of children with special needs, by creating sensory rooms (like Eliah's) in their homes. (SensoryIntegrations.com) It is all very exciting, and we are looking to the new year with hope for new achievements and adventures.

Thank you to everyone that always checks on and asks about us. Merry Christmas!

Progress

2009-10-19T20:01:00.003-04:00

Eliah is making great progress, and I am thrilled!! Every day there are new movements, thoughts, and sounds. There are still frustrations and struggles, but Eliah has improved so much. His blood pressure was on the rise again, but with a small adjustment to his medication a couple weeks ago, he is more relaxed and happy. He has gone without seizures for a couple months, and his health seems much more stable overall.

Eliah is still sleeping through the night (mostly), and eats a well-balanced diet. He is now 36" tall and weighs 27lbs. He's rolling from one side of the room to the other. And he can sit independently for almost a minute. One of the videos below is Eliah in his walker at Physical Therapy. For him, this was a MAJOR task, and very exhausting. As our therapist said, what he was doing in the video is the equivalent of us running miles.

The other video is some playtime and "talking" that Eliah was doing this evening. I'm so proud of his progress and I am hopeful that in the months and years to come, his brain makes MANY more connections to further repair itself.

What's in a label?

2009-08-24T19:53:00.001-04:00

Eliah now has the official diagnosis of Cerebral Palsy, among the many other conditions plaguing his little life. We always knew that he had brain/movement issues, now we just have a label. Cerebral Palsy is just an umbrella term used for conditions causing physical disability. However, with that diagnosis, we are now eligible to take advantage of more programs for Eliah.

The good news is, Eliah's issues seem to be mostly with his movement. He is able to comprehend close to a two year old level, and is able to follow directions. It's just getting his body to cooperate that frustrates him. But the good news is, Eliah's progress is not relative to his delay. He is progressing very rapidly and catching up in some ways to other children his age.

Sleeping through the night has made a great difference as well. Many of Eliah's sensory issues and defensiveness have been resolved. We believe that he was so overtired for so long (getting only 2-3 hours a night) that everything was overstimulating him. Sleep is a precious thing. Now we ALL cherish a full night's sleep.

Eliah Update

2009-07-14T11:44:00.002-04:00

I have experienced a new feeling with regard to Eliah. Pride. In light of his recent progress, I feel that I can look back on his life and what he has overcome and I honestly feel proud to be Eliah's mother. I could not say that a few months ago. I love him with all my heart, but
I was resentful for the major responsibility that was thrust upon me without my consent.

And just when I felt like I was at my breaking point, Eliah began falling asleep by himself, sleeping through the night, and entertaining himself for extended periods of time, leaving me to have long sought after freedom. In the past month, Eliah seems to have had a light in his eyes that is reflected in new movements and actions. He acts as if he is just now seeing a whole new world around him and wants to be a part of it.

He is interested in people and toys, and tries desperately to move and communicate. Just this morning, Eliah was able to identify and touch the "blue square" on the toy pictured below. As well, Eliah was able to sit, propping himself up, for almost an entire minute. And he danced to some of his favorite songs by waving his arms and kicking his feet.

These may seem like small tasks, but compared to just a couple months ago, they are major accomplishments for him. And what I love the most, Eliah is so proud of himself. The self-awareness that I see in him gives me hope for a long, but rewarding future of reaching milestones large and small.

When I read older posts in this blog, I think about how I felt when we really didn't know if Eliah was going to make it or what our future would hold. Now, two years later, I am so thankful for having the opportunity to be a part of such a special life. Eliah is strong, brave and wonderful. I couldn't be more proud.

Eliah is Now Two.

2009-06-07T18:30:00.003-04:00

I've been meaning to write an update for Eliah's second birthday. However, at the present moment, I am finding myself resentful and at a loss for inspiring words.

I am frustrated that I have a two year old that cannot do the things he should be doing now. He still cannot sit up, crawl or talk. Eliah is comprehending more and more, but it leads to frustration on his part. He cannot communicate with words or actions, and instead screams, while we frantically try to find the reason for his displeasure. We occasionally see glimmers of hope, light and understanding behind Eliah's eyes, and we cling to the possibility that things will one day be better.

We do our best to give him all our love, teach him what we can, and make him happy with the things we know he enjoys. I am thankful that we are the parents of such a special boy, I am just impatient to see what the future holds.

Enjoy the pictures. Thanks for always thinking and asking about us.

Small Update

2009-03-11T15:00:00.001-04:00

Just a note to let everyone know that Eliah's test for Celiac disease (gluten allergy) came back negative. We are pleased, to say the least.

A Great Description

2009-03-02T21:12:00.001-05:00

This essay was shared with me by a friend today. I found it to be a great example of how our life is as special needs parents. We want to be able to explain our story/life without invoking pity. And, in my opinion, this does just that. Our experience as parents is different, but good in it's own way. Enjoy.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Valentine Camping

2009-02-17T14:11:00.001-05:00

Eliah and Natalie needed an adventure. The weather was perfect, so we decided to take the kids camping. We all had a GREAT time. Eliah slept really well, and Natalie ran and ran and ran and ran some more. We hope to have many more trips like this one.

And I also included a couple of pictures of Eliah hanging out in the sensory room. Hope you enjoy!

Eliah got a stander

2009-02-13T14:53:00.000-05:00

Eliah is moving up in the world. We've have been having issues getting Eliah a suitable stander. Medicaid budgets have been cut, and have made the process difficult. Last week, our Early Interventionist (an awesome woman), ran across a stander at a local special needs center. It was not in use, and we were told that Eliah could use it as long as he needs it. So we are pleased that he has one more thing to help him improve.

Eliah Update

2009-01-24T11:47:00.002-05:00

Eliah has been well the past couple weeks. We did a follow up with his Hematologist, as well as the Geneticist. The abnormal blood tests Eliah had in the hospital are still in question. We are being referred to a Gastroenterologist next to discuss some of the nutritional deficits. We will also be testing Eliah for Celiac Disease, a gluten allergy, which may explain his weight loss, extended blood clotting time, and some other issues.

As far as Eliah's bones are concerned, we are assuming he was going through a growth spurt while we were in the hospital. That could definitely cause his blood tests to be wacky. And if you've seen pictures lately, you will be able to see that he is "advanced", to say the least, with his height. I believe he is in the 95th percentile for height. We will just keep a careful watch on those blood tests in the future.

Another concern for Eliah has been the potential for inhibitors, which is basically an immunity to clotting factor. The earlier in your life you start with recombinant factor, and the more you take, the more likely you are to develop inhibitors. We have been testing Eliah on a regular basis for these inhibitors. Luckily, he has not yet developed them. And according to the Hematologist, at this stage, if Eliah were to develop them, it would have already happened. So we may be in the clear.

The Geneticist had some interesting things to say as well. He forwarded Eliah's CT scans and MRI's to MUSC Charleston, to a friend of his in the Neurology dept. He reviewed the tests, and found Eliah's case to be very interesting, and wants to use him as a case study. Which may bring other points of view into the mix, as well as the possibility of others wanting to research or study him.

This is what they had to say though. As we suspected, Eliah had spontaneously bleeding on his brain in the womb. This, in turn, caused loss of brain matter, which explains his smaller brain. Then, two subsequent bleeds on his brain after birth, which caused further brain matter loss. All of which explain his developmental delay. It is possible that Eliah has a particular gene mutation that triggers spontaneous bleeding, secondary to his Hemophilia. Which one? It may be 10 years, or never, when we find out.

Good news is that, there are two cures for Hemophilia, and one cure (stem cell therapy) to cure brain damage to 100% capacity. Although we are looking at many years away, the technology is out there. And that gives us hope.

Sensory Room Pictures

2009-01-04T13:11:00.002-05:00

Thanks to Nanny and Poppa for funding Eliah's Sensory Room. It is almost completed, but still needs a few finishing touches.

An MSE (Multi-sensory Environment) is used to help stimulate and calm at the same time. We are using this room as a way to kick-start Eliah's brain into high gear. We have things to stimulate his brain on many different levels, using many of his senses.

Most of what we have done is based on the Snoezelen Method of therapy. See the link to learn more: http://www.snoezeleninfo.com/introduction.asp

Home from the Hospital (again)

2009-01-02T13:02:00.001-05:00

We are home! And we have the doctors stumped.

I wish we could just figure out what is going on with Eliah. While in the hospital, we received some abnormal blood test results....which indicate there is a problem. But the test results are so randomly off, they do not point to any particular disease/syndrome/disorder.

For example, Eliah's Folate (Folic Acid) level came back very elevated, which could indicate that he has a B-12 deficiency, but B-12 levels were PERFECTLY normal. His Alkaline Phosphatase level (related to the production of bone) came back very elevated. Normal range is 74-382, Eliah's was 1267. Which could mean that Eliah is not producing bone the way he should (like a Vitamin D deficiency). But his blood Calcium was normal, which indicates he has plenty of Vitamin D. He also had low Hemoglobin and Red Blood Cell count and Iron levels, indicating that he has anemia.

The doctor wants to look at Eliah's kidney function in the next couple weeks, to make sure they are working properly. But, in doing my own research (ain't Google great?), I have found a couple of things that seem to connect the abnormalities in his tests. The doctor mentioned this, and I think, we may be dealing with a Bone Marrow issue. Something to the effect that Eliah's body is not producing Bone properly, and in the loss of bone mass, may be having trouble with his bone marrow producing enough red blood cells. I don't know if that makes sense, but some of the cause of this particular disorder may be due to radiation. Eliah has had a TON of radiation from the numerous CT scans.

Basically, I think Eliah is having trouble absorbing the fat that he eats, and having trouble metabolizing his food to create bone. That, in the chain reaction of events, could cause less production of red blood cells, and cause anemia (which we know he has). With anemia, he gets lethargy, loss of appetite, increased developmental delay and behavioral problems.

I called the Geneticist today in the hopes that we can possibly do further testing in the metabolic/auto-immune category of disorders. And we are to go back to the Hematologist in about two weeks. Ultimately, the range of possibilities with Eliah range from catastrophic to minimal. We just don't know, and time will hopefully tell.

Thanks to everyone that thinks of us, and shares their thoughts and prayers.

Eliah back in the Hospital

2009-01-01T14:14:00.001-05:00

The saga continue with another installment of hospital fun. Eliah started running a slight temperature (around 100) yesterday afternoon. I gave him Tylenol and he seemed to be okay. By 9pm, his temperature started rising again (around 100), so I gave him Tylenol again. He fell right to sleep, and within 10 minutes, his eyes opened and he started seizing. I checked his temp again, and it was now 102.3. We started him on oxygen, called the Hematologist, 911, and Neurologist. Then we gave him a dose of Diastat (which is basically Valium). No change. So we called 911 again for them to send the ambulance.

Eliah's breathing became very shallow, as we ran around the house frantically packing our bags for the hospital. Natalie tried to comfort Eliah by holding his hand and kissing his cheek, but soon became overwhelmed and panicked. Luckily, my sister-in-law came to get her and bring her home. We anxiously waited outside for the ambulance to come.

I rode in the ambulance, holding Eliah, and watching Kelley weave in and out of traffic trying to follow us. Eliah was breathing very slowly, approximately one shallow breath every 10-15 seconds. His oxygen saturation level kept falling, and the paramedic was about to intubate Eliah as we were pulling up to the hospital.

We got in, and got him on a good amount of oxygen while we waited for his seizure to end. The Hematologist made it there in record time and decided to rule out new bleeding on Eliah's brain by doing yet another CT scan. Thankfully, nothing new. However, his Hemoglobin level is pretty low, and they are testing again now, so we may expect a blood transfusion in the next day.

The Neurologist came by and said to increase his seizure medication, in the hopes of preventing future episodes. But Eliah is just going to be prone to these sorts of things. The problem we have is that with every seizure (especially longer than 30 minutes) he may lose development, that has taken ages to gain. In the hopes of heading these off at the pass, I am to start him immediately on oxygen, valium and call paramedics as soon as a seizure starts. We cannot risk Eliah stopping breathing from a seizure.

Looks like we will have many hospital trips in the future. And I am terrified to be home alone with both children. I hope I have the strength to handle it.

Eliah's first Camping Trip

2008-10-26T15:20:00.005-04:00

We took Eliah on his first camping trip this weekend. He LOVED it. In fact, he slept really well. We will probably have to add a sleeping porch to the house now.

We live at the base of Paris Mountain, and we camped on the mountain, only two miles from our house. But we did that in case we had to take Eliah home in the middle of the night. And we also knew where the hospital was, so it was less stressful, and safer.

We went paddle boating in the afternoon, set up camp, even saw a Yeti (DH), had dinner by the campfire, then snuggled and made s'mores. What a time!

Eliah is 17 months

2008-10-12T11:29:00.003-04:00

Well, the little man is now 17 months old, and I thought I would just give everyone an update and pictures. We don't really explain much, so I wanted to be a little detailed. It sounds a tiny bit depressing, but we are happy with what he IS able to do.

At 17 months old, Eliah is not yet walking. He is not yet sitting unassisted. He is not yet feeding himself. He can roll from his belly to his back, sometimes. He is not yet crawling. He can sometimes grab a toy off the floor, but mostly we have to hand it to him. He is not yet talking. He does babble sometimes, but no words. He is not yet playing by himself, and requires constant attention. Mostly, Eliah lays on the floor and kicks and laughs, or we are carrying him around.

He is not yet sleeping through the night. He is completely resistant to all sedative type drugs, including a double dose of Chloral Hydrate, which is the date-rape drug. We spend many nights walking with Eliah in the driveway for hours.

Eliah IS now able to see, and can see across the room. He is able to recognize all family members, and loves his sister's singing (not so much Mommy's singing). He still loves music, and we keep our MP3 player with us at all times. He still has a preference for Bluegrass, but we are trying to expand his horizons a little.

Eliah's health is good for the most part. We have been concerned with his weight dropping over the past few months. He was down to the 15th percentile. But has gained 4lbs in the past 30 days, and is now back up to the 50th percentile. He is now up to 27lbs (definitely a back breaker).

His blood pressure and temperature seem to fluctuate erratically, as well as his weight. For instance, one minute his temperature is 100.5, and within an hour, it's 96.7. The doctor seems to think that with Eliah's brain damage, he just cannot regulate those things. I don't really know what that brings for the future though.

We now have an aide that comes to our house every day, during the week, for 5 hours a day. She holds and plays with Eliah while I rest or clean. And when I hold Eliah, she cleans, fixes lunch, or folds laundry, basically whatever needs to be done. I feel VERY lucky to have her.

The aide also assists me in giving Eliah his clotting factor every day. And Eliah is so used to getting his daily shot, that he laughs almost the whole time I'm doing it. He hasn't seemed to have any new bleeding, so I guess we are doing it right.

That's basically it. We are still waiting for more blood test results in the coming weeks. But I don't foresee any real answers. We just keep on trucking and managing our life to fit with what Eliah needs. Thanks for always asking and thinking about us!

Ann

ELIAH GOT GLASSES!!!

2008-09-18T20:47:00.001-04:00

Well, Eliah is officially a geek, just like his daddy. :) It's going to take a while for him to get used to his new glasses, but I think his vision has already improved in the past couple hours. Our hope is that the glasses will correct his vision in both eyes. He has not been using his left eye at all, which is why it goes towards his nose and makes him look cross eyed. If the glasses do not fix his left eye, he will wear a patch over his right to force his brain to use the left.

Anyway, he just looked so cute I had to share!

Home from the Hospital!

2008-08-24T20:30:00.003-04:00

Well, Eliah woke up this morning without a fever. YAY! So we are just to assume it was a virus. He is refusing just about all food today. And the antibiotics have torn up his stomach and "biscuits" (butt). Poor little man is raw and screams every time we change his diaper. But he is so happy to be home. He slept a total of about 5 1/2 hours today. And, as you will see by the picture, was happy to "kick it out" in the tub when he woke up.

That's all for this episode. Thank you to everyone who kept us in their thoughts during this time. Lots of love.

Saturday Afternoon Update

2008-08-23T13:53:00.001-04:00

Okay, we are here at the hospital for another 24 hours at least. Eliah woke up with a fever of 102, and it was on the way up. So we have to stay in the hospital until he doesn't have one when he wakes up in the morning. They are also stopping the antibiotics, finally. He is just starting to get an appetite back, so maybe that means he's getting a little better. His temperature pretty much remains at 100 even with Tylenol and Motrin in him though. So he's not better yet.

The doctor said it's maybe Roseola, Fifths Disease or something else. I can't remember the last one. Regardless, we just have to wait it out.

And Natalie is having a grand ole time at Nanny and Poppa's house. She doesn't even miss us. The nerve.

Friday evening @ the hospital

2008-08-22T19:21:00.005-04:00

Okay, the doctor came in and said that Eliah did not have any new bleeding. And he continues to have fevers, so they believe that it's viral and not an infection. However, they are still continuing the antibiotics. We also had an EEG a little while ago. No signs of seizures on the screen. That means his seizure was from the fever. Also, when he woke up from his nap about 4:30, his temperature was 105.2. This is just plain crazy. So we are in the hospital until we figure out the fever, however many days that lasts. Maybe it's Roseola? We may never know.

Anyway, we are going to be going home with a prescription for Valium gel that we will squirt in Eliah's butt if he has a seizure. The doctor was laughing and said, "Make sure you squeeze his cheeks together, so he doesn't poop it out." Nice. And it comes in a two-pack. One for Eliah and one for me. And we will also have oxygen, so we can help him breath through his seizures.

That's all for now. I will update as I can. And thanks so very, very much for the support and good thoughts. This is no picnic, I will tell you that, but I am so thankful for friends and family. Here in the hospital, it doesn't take long to find someone that has it worse than you. And it just makes you appreciate what you have.

Ann

Another quick update from the Hospital

2008-08-22T12:22:00.002-04:00

Eliah had a Generalized seizure a couple hours ago. They had to sedate him to stop it. He also stopped breathing on his own for a couple minutes, so they had to "bag" him. We just got back from yet another CT scan. I guess we aren't going home today.

Here are some videos. The first two are the seizure he had this morning. The third is a fun video from a couple days ago.

http://www.youtube.com/watch?v=VkJce6DP5Po

http://www.youtube.com/watch?v=llFkHAZCuSM

http://www.youtube.com/watch?v=8clitzkJGfY

Eliah Update Friday Morning

2008-08-22T07:50:00.001-04:00

This morning, around 1am, Eliah had a reaction to the second round of antibiotics. It's called "Red Man's" Syndrome. Basically, he turned beet red from the eyebrows up. And from what they tell me, it feels like HELL. They had to stop the medicine and give him an antihistamine/sedative and tylenol before they started the medicine again. It was a long night. But I believe that his fevers have stopped.

The nurse was telling me that it's "Hemophilia Week" at the hospital. I asked what that meant, and she told me that there were several other kids at the hospital with infected ports. She said that their mother did their "infusion", and within hours, they had a temperature of 104. I find that very interesting and wonder if it could be the saline, factor or heparin causing this. I know that I am super careful when it comes to port safety/cleanliness. And I couldn't figure out how he could have gotten an infection. This would make sense. Who knows if anyone will put two and two together though.

I don't know what the plan is yet. But will update as I can. And thanks again for the well-wishes.

Ann

Eliah Back in Hospital

2008-08-22T07:36:00.000-04:00

We REALLY missed spending time at the hospital, so we are back for a small vacation. Eliah started running a fever of 103.5 yesterday afternoon, so we took him to the Hematology clinic. They ran blood cultures and labs, and administered a 30 minute IV infusion of antibiotics. Whenever he has a fever, they need to treat him like his port is infected.

By evening, his fever was back up to 103. We came back to the clinic today to do another round of antibiotics, but based on the lab results, they did not see any bacteria. So there are two things that could be causing a fever like that. Either a virus, which nobody else in the family has gotten. Or, it's a Staph infection in his port.

They admitted us to the hospital this afternoon and brought out the "BIG GUNS" of antibiotics. If they don't work within 24 hours, it's probably just a virus and we will be sent home. If it does help him, we will be here another 7-10 days. My poor baby was running a fever of 104.2 just about an hour ago. So hopefully we see some relief soon.

I will update as I can.

Eliah & Natalie spam

2008-08-06T16:21:00.001-04:00

Nothing really going on with us. I just wanted to send some photos of the kids. You know, because you all don't see enough!

Re: New Eliah Update

2008-07-10T17:21:00.002-04:00

The CT went well. Eliah was in a great mood and laughed most of the time we were at the hospital, even though he hadn't eaten all day due to sedation preparation. But there is no new evidence of bleeding on Eliah's brain. Woohoo! And the inhibitor test will take about a week to get the results. The doctor was fantastic! He got a vein in Eliah's hip on the first try. And even though Eliah was sedated at the time, as soon as the needle touched him, both legs flew in the air, and the doctor had to inject more sedative. But all went well.

The x-ray we did to look at Eliah's port is still in the pipeline to be reviewed. But from what I gathered, the port looks to be the right size for now. And there does seem to be a little bit of Fibrin at the base of the port. Which means they will have to put something in his port to clean the Fibrin from there. Not a big deal though.

And I think the bruise may have come from Eliah's carseat, so I padded it a little in the hopes that it won't happen again. I also plan to give him clotting factor anytime we are going to be in the car for a while.

New Eliah Update

2008-07-08T15:34:00.002-04:00

Hello to all. I just wanted to give everyone an update on Eliah. Thursday, Eliah had his first "visible" bruise, on his lower back. It was not large, as you will see by the picture, but is of concern. I called the doctor and we were told to give him an extra treatment. Saturday he was still really upset, so we gave him an extra treatment again. Then we went to the Hematologist yesterday to follow up. The doctor noticed some unusual things with Eliah and seems to be concerned that Eliah may have new bleeding on his brain, and we are to get another CT scan on Thursday. Until then, we do his shots every 12 hours. They are also going to draw blood to check for inhibitors while he is sedated. Inhibitors are an "immunity" to replacement clotting factor.

What the doctor found concerning was this: First, Eliah has been getting motion sick (freaking out in the car and when certain videos are on tv). Second, his eye shaking has started up again. Also, the veins in Eliah's face have started to swell. In good light, you can see almost every vein under his skin. And I think this is related, Eliah's nose has been running for about a month. Claritin does not work, and he is not running a temperature. The doctor just seemed to focus a little bit on that point.

In addition, it has been getting harder to get blood from Eliah's port. The doctor seems to think that Eliah's blood is clotting near the end of the port, and creates a vacuum when I try to pull back on the syringe. So they are going to put something in his port to reduce that clotting. We are also going to check to make sure Eliah's port is still large enough for him. He has gotten a lot longer and will need to have surgery to replace his port with a larger one. We just need to find out whether it's sooner or later.

Yesterday we also went to the Nephrologist to talk about Eliah's blood pressure. So far his blood pressure has remained in the normal range, so they took him off Norvasc. He is still taking one blood pressure medication though. The only thing of concern is that about every 7-10 days, Eliah's blood pressure goes up for about 3 days, and then back down to normal. Who knows what that means.

I also talked with the Geneticist yesterday and got some of the test results back. The DNA test, looking at the X chromosome, came back with just the Factor VIII (Hemophilia Gene) deleted. They speculated that maybe some other genes were affected, but it is only the Factor VIII. Good. The test they did for one of the Glycosylation disorders came back negative, and we are still waiting for the two others they checked for. It will be another two weeks before we find out the results to those. They have now added a request for a total chromosomal spectrum analysis to see if there are any other abnormalities. Who knows when we will get the results to that.
Anyway, that's all for now. I will hopefully be able to update on Thursday after the CT.

Thanks,
Ann

Small Eliah Update & Picture Spam of the kids

2008-06-19T13:19:00.010-04:00

We've been doing great! Eliah met with the Geneticist last Wednesday, and we dropped off blood yesterday to do some testing. We should find out some DNA tests in the next couple weeks. And Eliah is able to be on hands and knees for short periods of time. He's also working really hard on using his hands to grab toys. He has had some dizziness in the past week, which makes him freak out in the car. But we are hoping that it is just a bug or ear infection. We'll see if it continues. I will update as soon as we get some test results!!!!

Eliah Eye Update

2008-05-22T22:03:00.001-04:00

Update on Eliah's eye appointment. First, I made a mistake. I heard Eliah's vision was 2400, but it was 20/400. But the doctor said that what Eliah can see really isn't much different than if it were 20/2400. Anyway, a little good news, Eliah's right eye has improved. He is now at 20/100 in his right eye. Still 20/400 in his left, which is why he has been cross-eyed lately. The doctor said that we may have to put a patch on his right eye in the future to get the left to catch up. But overall, I am pleased. I thought that the damaged nerves in his eyes permanently affected his vision. I didn't realize that his vision could improve despite the damage. That definitely gives me hope.

And we go to see the geneticist on June 4th. I still think he has a glycoprotein disorder, and it turns out that our genetic center is one of only a handful in the world that can determine that. If Eliah doesn't have any chromosomal disorders, or glycoprotein disorders, then we will be referred to Emory in Atlanta to determine if it's a metabolic disorder.

Thanks for all the good thoughts!
Ann

Eliah & Family Update

2008-05-20T07:52:00.006-04:00

Well, it's hard to believe that in a week it will be a year since our bundle of stress arrived. Things have been going pretty well. Eliah has 14 teeth! #15 and #16 are on their way in as we speak. He is also doing a lot better with sitting up. Although he cannot balance himself, he wants to be in an upright position most of the time. SO that is a big improvement. He is able to drink from a sippy cup, and he's working on eating finger foods. And we have reduced his formula intake in preparation for something else (mabye goats milk?), and it's saving us a little money. For a while, it was costing $500 a month to feed him.

Every week we take him to Physical Therapy, Occupational Therapy, and someone also comes out to the house to work with him. He has been "diagnosed" with Sensory Defensiveness, which means he shuts down from small amounts of stimulation (like making eye contact or changing his shirt). So we have been doing some sensory training with him. Basically, we rub him down several times a day with a scrub brush. He has been so much better since we started that. I am actually able to walk away from him for more than 30 seconds. And he actually enjoys bathtime now, instead of high pitched screaming the entire time. And since he still isn't sitting independently, we have ordered an adaptive bath chair for him. It looks like a lounge chair for the tub.

Luckily, Eliah has not had any kidney stones, and his blood pressure seems to be under control. We found a professional blood pressure monitor on ebay for $300, so we've been able to track his pressure at home. We do his "infusions" (shots) every morning. It's time consuming, expensive and he screams the entire time (no pain, it's sensory overload), but we seem to manage pretty well. It's funny, if we were to get robbed, the most valuable thing we have in this house is the $30,000 worth of Chinese Hamster Ovaries we have in the fridge. I don't know how much resale value at a pawn shop that would have though.

Now comes the "not so great" stuff. Back in January, Eliah had an eye exam that revealed that he had some damage to the nerves in his right eye. The doctor told me that it could still be within the range of normal, and that he couldn't tell how it affected Eliah's eyesight. And that he can't tell me what Eliah can see until he is older. And since January, I have been under the impression that Eliah could see. I just found out today about a report, from the Opthamologist, that was sent to Child Developmental Services (where we get PT & OT), that Eliah's vision is 20/2400 and that we need to be seen by the School for the Blind. Legally blind is 20/200. So basically, as of January Eliah has been close to totally blind. This website shows a picture, on the very bottom left, that represents what Eliah's vision is like at 20/2400... http://www.seeingwithsound.com/acuity.htm Needless to say, I got the wind knocked out of my sails today.

The good news is, he was still on two major seizure medications at the time of the test. And he was having a lot of shaking in his eyes at the time. In the past three weeks, Eliah's eyes have stopped shaking, and he is starting to track objects. We go back to the Opthamologist on Wednesday, so I am anxious to see what his visual accuity is this time.

Anyway, what a year. I can't believe we've made it. And I am so proud and thankful for my strong boy and my wonderful family.

Lots of love to all,

Ann

Back Home

2008-04-07T10:19:00.001-04:00

Sorry I haven't updated in a few days, but it's always tough to get used to a new routine. We got home Friday afternoon......finally. We have a bunch of new medications, for many different times of the day. We are also adjusting to giving Eliah his clotting factor in the mornings, five days a week. And we are still trying to figure out how we will take Eliah's blood pressure at home. The cheap monitors don't work on him, and the professional models are $3700 and hard to find. So, we are just going by how he looks to determine his blood pressure.

He gave me a good scare yesterday. I put him down in the crib to attend to Natalie, and he just laid there and stared. He would not look at me, or toys, or respond to sound. Then, after a couple of minutes, he just threw up, straight up in the air. So I picked him up and held him over my shoulder. He still just stared and was breathing very slowly. I kept trying to take his blood pressure to make sure it wasn't too low, but it wouldn't take on that cheap machine. By the time Kelley got home from Home Depot, Eliah was just falling asleep, and Kelley was able to get a blood pressure after many tries (it was a low/normal rate). Eliah then slept for 3 hours and woke up perfectly normal. What the heck? Eliah also passed what looked like a couple Kidney stones yesterday, so we put them in zip-locks and Kelley is running them by the dr. this morning.

We have also been adjusting to our new baby formula. We thought our hypo-allergenic formula was expensive. It was costing us $28 every 4 days. Now, they have switched us to Neocate, a super-duper hypo formula. It costs $40 every 3 days. Hopefully, insurance will cover it.

On top of all that, Kelley was able to get some good progress done on the kitchen renovation. He and his dad got a lot of the cabinets installed. We were a little behind schedule because of our hospital stay, but life continues on.

Thank you to everyone who thought about us during this rough time. Although it doesn't seem like it, Eliah is making good strides to catch up. Saturday was the first day that Eliah was able to prop himself in a sitting position, and stay there unassisted for more than a minute. Up until then, he was never able to bear any weight on his arms. Slow and steady wins the race. We are proud of our little tortoise.

Lots of love to all,
Ann, Kelley, Natalie & Eliah

Eliah update Thursday

2008-04-03T11:40:00.001-04:00

We are out of ICU and into a regular room as of yesterday afternoon. We believe that Eliah's blood pressure is mostly manageable now. He is not refusing as much food, but he is still in pain about 20 minutes after he eats. The nurses were shocked yesterday when he was having stomach pain yesterday. They were almost in tears and could not believe that he was only prescribed Tylenol. They insisted that he get something stronger. Unfortunately, he cannot have motrin (it inhibits platelet function), so our other options are Morphine or Benedryl just to knock him out. We tried Morphine, and just like Eliah, he had a different response to the medication. Most children fall asleep as the Morphine is going in the IV, not Eliah. He was wired for the next two hours, and his blood pressure went up during that time. So, no more Morphine. I didn't want to try Benedryl again based on the first time he took it (turned beet red and temp went up to 100) Luckily, we didn't need anything else, and he slept through the night.

We are currently waiting for a GI doctor to come by today to run his string of tests, if any. We laugh that we have seen every specialist that the hospital has to offer, but in truth, we have. We were asked to go on camera with Eliah, which we did, to help make a commercial for the hospital, since we have utilized so many services and specialists. They said that we were a good representation. It should be airing on our local NBC station in the next couple months.

Eliah ran another fever of 103 again a couple nights ago, but it only happens for an hour, then he is right back to a normal temperature. They started him on antibiotics for his port just in case. The CT of his abdomen was perfect, and the Spinal went well with no complications. They wanted to give Eliah his clotting factor before the Spinal, so I suggested we check his factor levels in a vein while he was sedated but right before they put in new factor. Great idea, huh? Two nurses, an Intensivist Doctor, a $25,000 vein finder (I had to sell my soul to get it), and many sticks into Eliah, we were still unable to find and/or access a vein. So, no test. What is with this kid? Anyway, they took a ton of spinal fluid and Eliah woke up with a hell of a headache. He screamed for 40 minutes until he finally exhausted himself to sleep. They wouldn't give him anything more than tylenol, but when he fell asleep they offered Morphine. Sometimes I wonder about these people. They have these "trainee doctors" running the show during the day and really don't know how to make decisions.

Eliah's Spinal fluid came back very clean. No sign of congenital infections, only 1 white blood cell, low lactate and pyruvate levels which mean it is unlikely that he has a mitochondrial disorder. It will take a couple weeks to get word back from France on one of the samples, but preliminary results show no cells relating to Aicardi Guitterez Syndrome (which is what the Neurologist was speculating at one time). So we are kind of back to square one. Everyone keeps telling us that Eliah's Hemophilia is not typical and that there is something else going on. Our Hematologist called down to Emory (instead of Duke), because they have a Hematologist that also specializes in metabolic disorders. So we may head down there in the next week. Duke is great, but they don't have the specific combination of specialist that we think Eliah might need.

On another note we are now on the "it" list over here in the regular Children's Hospital, thanks to Kelley. He and the nurses had a "run in" over his cot and among many other things. It ended up with the Head Nurse, a social worker and the Fire Marshall in the room. But in the end, we have been getting everything we want, and some dirty looks from nurses to boot. We are now known as the trouble makers.

Anyway, thank you so much for all that have come to visit us and thought about us. We are very thankful to have such good family and friends. And a special thanks to Kelley's parents for taking such good care of Natalie!

Ann

Small update

2008-04-01T04:17:00.001-04:00

Eliah woke at 3am with a fever of 103, and he was miserable! Hopefully his port is not infected, but you never know. The easiest place to get sick is in a hospital, ya know. As far as everything else goes, all plans are for the CT of his abdomen and the Spinal to be done tomorrow at 11am. His blood pressure seems to be down to a manageable rate, so we may move to a regular room tomorrow too.

On a pleasant note, we had a number of wonderful friends and family visit today, and we are so grateful for seeing happy faces. The pictures include a friend who came up to visit from Columbia today bearing gifts. One gift was the blanket that Eliah is under (like a fort). He was mesmerized by the glowing elephants.

Eliah Update Sunday night

2008-03-30T22:08:00.000-04:00

We have had a pretty good day today. Eliah has been so happy. To look at him, it's easy to think "Why are we even here?". But when we look at the monitor and see that his blood pressure got to 197/110 today, we remember why. And he is still refusing food. He drinks in the morning, then refuses most of the rest of the day. They are still trying to coordinate getting the CT of his abdomen and the Spinal Tap done tomorrow at the same time. It may be pushed back until Tuesday morning.

As far as the blood pressure goes, the doctors tried a new medication last night. At first it worked, then around 2am his blood pressure started creeping up. And it spiked several times throughout the night. They just kept increasing the medication to no avail. Just as we were about to try another approach, the nurse put a new syringe of the same medication on the IV line. And it started working almost immediately. So well in fact, that his pressure dropped to around 85/35. We had to take him off the medication immediately. And they increased his Norvasc to compensate. His pressure has been steadily increasing throughout the day, so they just started the IV drip of the med he was on last night.

And I am so frustrated with this clotting factor business. To check his clotting levels, they have to stick him in a vein. They cannot use the port, since that is where we put the factor, it's not an accurate reading. Up until today, for the 8 times he's been stuck, we have only had one nurse get a vein. And Eliah only has two veins. So they have been stuck over and over again until they blow, only to try again the next day. The Hematologist was so frustrated today that we was on his way here this evening to stick Eliah himself (in a vein in his head, ew). Doctors don't typically do the sticking, but he was determined. Luckily, our wonderful nurse stepped in and tried. After a couple minutes of stress (Eliah's blood-curdling screams in the background), she found a vein. But we could not get enough blood for the test. She tried again, and after a couple minutes was able to get what we needed.

Unfortunately, the lab just called to tell us that the blood clotted before they could do the test, so we have to do it all again. Just a side note, Eliah's blood does clot just like everyone else, he is missing the gene that holds the clot in place while he heals. So by saying that his blood sample clotted quickly doesn't really mean that his factor levels are high.

Here are some videos of Eliah today. As you will see, sometimes Eliah is very cross-eyed and sometimes not. We have yet to discover the reason for it. One doctor believes that he had some hemorrhaging behind his eye from the high blood pressure. We will be going to the Ophthalmologist in the coming week.

Anyway, hope you enjoy! Thanks to everyone for the kind thoughts and words of encouragement. We can always use them.

http://www.youtube.com/watch?v=QG6wsmOUxUs
http://www.youtube.com/watch?v=iYtZCPHGf8Y
http://www.youtube.com/watch?v=ogVI2rM_i3Q

-Ann

Eliah back in the hospital

2008-03-29T19:16:00.001-04:00

I don't know where to begin. There are a ton of things going on. So far, we are currently in PICU with Eliah and will be here until at least Monday.

It started on Wednesday, the 19th. Eliah spent the entire day screaming. Thursday he passed a kidney stone. Then Friday, he started refusing to eat some of his meals and more screaming. I thought it might be that he is teething, so I treated him with Tylenol. We also did his clotting factor treatment that afternoon. On Saturday, he was still screaming, so I called the Hematologist. He said that Eliah may have bleeding somewhere, so he wanted us to do his infusion every 24 hours... and if not better by Monday, then call back.

Monday seemed okay. He kept refusing at least one his meals each day, and cried about an hour after each meal that he did eat. Wednesday morning I thought maybe Eliah decided he didn't like the taste of his formula anymore (babies are weird like that). And babies usually grow out of their milk allergies by six months, so I tried mixing a little "Gentlease" formula in. All was well for about 4 hours, then the vomit hit the fan. Poor Eliah spent about an hour throwing up and just drank a couple ounces of Pedialyte the rest of the day. Thursday morning he woke up with another kidney stone. He spent the rest of day screaming and refusing to eat. Also, he seemed to be very cross-eyed. So I called the Nephrologist (hypertension specialist) and he said to just go by the Children's ER to get an ultrasound done of Eliah's kidneys. We have been here ever since.

So far, Eliah has had an ultrasound of his kidneys, a CT scan of his brain (they thought there may have been new bleeding), x-ray of his abdomen, MRI of his brain, 24 hour catheter (to check for stones) and an EEG. Good news is that there is no evidence of new bleeding. And there are no seizures. Bad news, Eliah's blood pressure is out of control. They are on their 3rd medication to try to treat it. The second med they tried actually increased his blood pressure more. The Nephrologist is VERY concerned about Eliah having a stroke. In addition, we are having problems with Eliah's clotting factor.

Without any treatment, Eliah normally has about 1% of the clotting factor "normal" people have. Typically, you treat to get him up to 100%, and it has a half-life of 12 hours. Which means, at 12 hours he is at 50% of what "normal" people have, 24 hours he is at 25%, 36 hours at 12.5%, and 48 hours he is down to about 7%. And we treat him every 48 hours. So that should be plenty of factor to prevent any new bleeding. Eliah is one quirky dude, or so the tests say. We have been measuring his clotting factor since we have been here. We treat to 100%, and at 4 hours he is at 74%, 8 hours 4%, 12 hours 1%. So if we treat him at 7pm on a Tuesday, by 7am he is back down to 1%, as if we never treated him at all. All this time we thought he has been protected.

In addition, he is still refusing to eat. He will drink about 2 ounces of formula, then scream for 1/2 hour. He has had about 8 ounces of formula in the past 48 hours. Normally, he downs 28oz + 2 jars per day. They have plans to do a swallow test and CT of his abdomen on Monday, as well as a Spinal Tap to look for infections. All the doctors are stumped with what's going on with Eliah. They are suggesting that we high-tail it to Duke in the next couple of weeks. Everyone is in agreement that he is not well, and it is most likely due to a "disorder" or "syndrome" that has yet to be diagnosed. Duke should be able to figure that out.

We will update when possible. Just keep Eliah in your thoughts and prayers. Thanks!!!!

Eliah Update- Good and Bad News

2008-03-04T10:23:00.000-05:00

Eliah has been doing great. Every day he improves. We reduced one of his seizure medications on Thursday morning, and by evening he held his head up for 15 minutes and talked up a storm. He has been much more active and involved. He looks around the room, follows objects, and makes great eye contact. Last Tuesday he rolled from his belly to his back for the first time. We just had to put his shoulder down, and he went the rest of the way. We have been thrilled.

He has started some Physical Therapy and we have seen some good improvement with that. We also have a list of exercises to do with him daily to get even further. I feel like he is just now starting to be a baby. I cannot wait to see in two weeks when he is off Phenobarbital completely.

As he has been coming off one of the seizure meds, I have been concerned about his blood pressure. It has always been elevated, but the Phenobarbital is used to reduce blood pressure. Since we have been weaning him off this medication, we have seen an increase in his blood pressure. I called the doctor and insisted that we be seen by a specialist. We went to a specialist the week before last and were very surprised to see that is was worse than I expected. Blood pressure for a 1yr old (which Eliah is only 9months) is supposed to be no greater than 104/45. His was 169/97 in a calm state. He has Stage 2 Hypertension. And companied with his Hemophilia, he is at great risk for a stroke when he gets upset. Basically, he is a ticking time bomb.

So the doctor immediately put him on Norvasc, which has never really been used on infants. He didn't even know how to dose it. He also ordered an MRI/MRV, blood tests, an Echocardiogram and requested that his blood pressure be checked 3 times a week. We are still waiting to hear the results from the MRI/MRV and blood tests.

Yesterday I took him to get his blood pressure checked. It was down to 75/50!!!!!!!

We then ran upstairs to get the Echo done. After the test, the Cardiologist came in the room to tell me that Eliah has a Congenital Heart Defect. It is called a PDA. Here is a website that can explain what it is. http://www.nhlbi.nih.gov/health/dci/Diseases/pda/pda_what.html
The doctor explained that this is the reason Eliah turns purple and stops breathing when he cries. Fun. He also has some thickness in the lining of his heart from the hypertension.

Right now the approach is to wait and see since his Hemophilia complicates all the ways to resolve it. We go back to the Nephrologist (blood pressure specialist) on Wednesday to find out test results.

That's about it for now. I will hopefully be able to update in a few days.

Eliah Update

2008-01-31T10:49:00.000-05:00

GREAT NEWS!!!!!!!!

Eliah had an EEG on Tuesday afternoon, and the Neurologist called today to give me the results. Eliah has shown significant improvement from his last EEG. He is having normal wave patterns with rare spikes in the back left of his brain. Which means the doctor is further reducing his seizure medication. We get to wean him off two medications, leaving only one left. And the ones his is coming off of are the ones that hinder his ability to develop. So we will hopefully see great advances in his development in the coming weeks/months.

We also had an appoinment with an Opthamologist this week. The doctor does see some atrophy (shrinkage) of some of the nerves in Eliah's right eye. However, it is still within the range of normal. Eliah does have some visual impairment, but may be due to his delay or medications. His eyes are formed correctly, so he may be perfectly normal as he grows. We can definitely tell that he is trying to focus on things.

We also had a visit from SC School for the Deal and Blind this week (busy week, huh?). Anyway, we all feel that his vision is not the top priority at this point. We need to get him on track with motor skills (rolling over, sitting up, etc). So will are awaiting a call from the next agency in the loop that will be providing physical therapy. However, it may take a while for us to get going since they have a long waiting list. But Eliah has been trying to work on things himself. This past Sunday he was able to reach up with both hands and grab his bottle, pulling it to his mouth. Then later, reaching up and grabbing a toy on his chest. So we have been thrilled with his improvement.

And if I don't say it enough, thanks to everyone for the kind thoughts.

Eliah Update

2008-01-18T17:28:00.001-05:00

Eliah has been doing great. We have started the process of qualifying for the state program for PT, OT and other services. We/they think he may have some vision problems, so the School for the Deaf and Blind is coming out next week.

Eliah has been trying very hard to sit up, but he cannot hold his head up for very long. His head is huge and heavy, and he can only hold it up for about 30 seconds at a time. He weighed in last week at 21 lbs at 7 1/2 months. He is breaking my back! I have to hold him all day, every day. I was so happy one day last week that I had 8 minutes of not holding him. I was able to wash bottles, unload & load the dishwasher, and straighten up. It's amazing what you can accomplish in a frantic 8 minutes. All napping and all awake time is holding him. Ughh! I can't wait until he gets older!

He has shown great improvement with other things though. His seizures have mostly stopped and the doctor has further reduced his medication. We see him breaking through the medication "fog" every now and then. He is actually looking at toys now. And he is able to grab toys (with huge effort) that hang down from his playmat. And the key is, he is able to grab with either hand. So we have been thrilled.

The last time we went to the Pediatrician, he mentioned Cerebral Palsy several times, so we have been worried about everything Eliah does. And other than some stiffness in his legs, he seems to be doing everything well, just at a delayed rate. Still no rolling over yet though.

Eliah now has four teeth. The fifth one is breaking through today. And he has been eating solids successfully for the past month (another huge deal).

Overall, things are well. It's just our version of normal.

My Wild Child.....I didn't even change her clothes or brush her hair today. I feel so bad. I just went to comb her hair and discovered that she has glue in it.

A Christmas Letter

2007-12-25T21:45:00.001-05:00

We're sorry that we didn't get around to sending Christmas cards this year. It's been a little hectic, to say the least.

We've had a year with a lot of ups and downs, to be sure. Natalie got a baby brother, Eliah, on May 28. Eliah, as most of you know, was born with hemophilia. He has had several bleeding episodes on his brain, and we have been in and out of the hospital a lot. His bleeding caused a lot of seizures, too. We think we have everything under control now... but nobody knows what the future holds.

Natalie turned three this year, and we are finding out that three year olds ask a lot of questions. Not different questions. Just the same two or three, over and over. And over. And over. And over. She loves to draw. We noticed tht every time she draws a person, there are a lot of lines coming out of the head. At first, we thought "hair". But then, we started to see circles on the ends of the lines. When asked, she said they were the wires that get put on your head to make you feel better (like Eliah got in the hospital). Everybody gets them. We're so glad that she is becoming more and more independent. She can get in and out of the car by herself, take dirty dishes to the sink, and get her own snacks. We're also so glad to know that her favorite color is pink, that Pluto is her favorite planet, that her favorite TV show is "Go Diego, Go!", that water is important because it is healthy, that she likes to paint, and that sometimes her poop looks like a rainbow (don't ask).

Once Eliah got out of the hospital last time, we sort of lost track of a lot of you. It's generally known that babies do nothing but eat, sleep and poop. What we didn't know was that mommies generally do nothing but hold babies, change diapers, and catch any illness that any kid within 20 miles has. Daddies basically do the same, they just trade diapers for working at the office. Since we got out of the hospital, not a single day has gone by that someone in our house hasn't been sick. I'm hoping that we're building up a massive immunity to pretty much everything, and can continue the rest of our lives without getting sick again.

One more thing sorta went wrong this year... I think I got on Santa's sh*t list. Literally. Santa decided I was so bad, he skipped the "coal" method, and went straight to the other brown stuff. Right before Christmas, the city decided to clean out their lines. Somehow, something must have gotten stuck in our connection down at the road. Our sewer line backed up and filled our house (well, just the tubs) with some pretty bad stuff. I worked all night trying to figure it out and fix it, but only had tears to show for it. Thankfully, the next morning, my father showed up and saved the day. I don't know what I would have done without him.

Which brings me to my next point: over the course of this year, we have suffered a few set-backs. But we have also received an outpouring of love and support that has helped us make it through. Friends, family, and complete strangers have continuously been there for us. Everybody at my work has been very supportive, understanding, and caring. We even received some pre-cooked meals (which we're still eating!). Our families have been, since day one, patiently waiting on the side-lines... just waiting on any word that we need help. And boy, do they come through! They are the main safety net that catches us when we stumble. And we have friends all over the world who care and have been involved... sending nothing but love, asking nothing in return. I honestly don't know how we could have made it without all of you!

Many things are starting to look more positive. Eliah has started smiling and laughing, responding to our smiles and laughs. He really is a very happy baby, in general. And Natalie's belief in Santa this year lit up our whole little family. I wish you could have been there when Santa's sleigh bells woke her up shortly after she went to bed. She was so excited that he was getting close to our house, and couldn't hardly go back to sleep.

Oh, and one other thing helps to sum up this year:

VOTE RON PAUL 2008!!!!!!!!! :)

We do wish that everyone has had a wonderful Christmas, and will have a wonderful New Year, too!

Ann, Kelley, Natalie & Eliah

Eliah news.........

2007-12-06T14:40:00.000-05:00

Eliah had a CT scan on Friday to determine if there has been any new bleeding on his brain. Well, the Neurologist called yesterday to talk about the results. He said that there is something new on right side of Eliah's brain. It's long and thin, but he is not sure if it is blood. He said that he is not concerned about it at all.

And as far as the left side goes, where he had tons of bleeding........

It is all resolved!!!!!!!!!!!!!!!!!! GONE! Reabsorbed!

The doctors said that it would take at least 6 to 12 months to go away. That is probably why he has been improving so much lately.

We even got to stop one of the seizure meds. And we are supposed to go for another EEG next week to maybe see if we can reduce more.

When I heard the news, I was so excited, that I did a little jig in my kitchen! Miracles do happen!

Eliah Update

2007-11-27T09:54:00.001-05:00

Photo # 5-The Christmas decorations & Eliah: You can barely see him chillin' on the sofa, watching the fish!
_______________________________________________________________________________

Many of our friends and family have been asking about Eliah, so I thought I would give a small update. Eliah is doing okay overall. He is behind as far as development goes. I was surprised that he sat up for so long for pictures. He has not been able to hold his head up very much at all. He is like a 20lb, 3 month old. It's quite stressful on my back! And yes, he is as huge in person as he looks in the photos.

Just in the past couple weeks Eliah has been making some good advances though. He has starting wiggling like a regular baby. He lays on his back and kicks and swings his arms around. It's wonderful to see him move so much. I don't know how much is medication, but he does spend a lot of time just staring into the distance, with mouth agape.

I am pretty sure he is completely aware of what's going on around him, but he does not respond in an active manner. He still rarely makes eye contact, but does engage in play, and follows objects by looking in their direction (just not directly at them). Last night, I gave him a miniature Christmas tree to hold (very prickly), and he loved holding it, but would not look at it. He even got upset when I took it out of his hand to put something else there. It's kind of like he's living behind a cloud. I have to go in and get him involved in things. Otherwise, he would just sit and stare and cry. I don't know, we are working on things.

He has a CT scan scheduled for Thursday morning to see if there has been any new bleeding on his brain. I hope there hasn't. And we have been sticking him with his clotting factor every other day. And of course, every other time, I miss the port and have to stick him a second time. It's very stressful, but we are somewhat getting used to it.

That's about all. Just a day at a time. Thanks for asking and thinking about us.

This is Halloween...Halloween...Halloween

2007-10-31T20:33:00.000-04:00

We had a great time "Trunk-n-Treating" at Nanny and Poppa's church. Natalie also got to hand out some candy to the other kids. But Superbaby just couldn't keep up with the pace.

Last Update

2007-10-22T21:02:00.000-04:00

Well, today I had to stick my sweet little boy with a needle. I had nightmares about it all night. I dreamed that I didn't wait for the nurses and went ahead and stuck him without cleaning anything. I was so upset that I could have caused an infection.

There is such a strict process to go by. I was terrified that I would do it all wrong and cause Eliah to get an infection. And an infection on the main line to his heart is serious.

But, all seemed to go well at the doctor. I followed "most" of the rules from memory. I was able to put numbing cream on Eliah's chest before I stuck him. I was shaking so bad. And I couldn't believe how hard I had to push the needle in. It was difficult to puncture the port and push all the way to the back. But the little bugger never flinched or felt a thing. He thought I was just doing "mommy" stuff.

He seems to be regaining all the muscle in his neck too. He is almost able to keep his head up for extended periods. I'm so proud.

Love to all,
Goodnight

HOME

2007-10-19T21:45:00.001-04:00

Home at last!!!!!! My little man seems so different to me. One week definitely makes a difference. Anyway, Kelley and Eliah came home today, and so far, all is well. Eliah has been fussy, then playful, then hungry. Typical baby stuff.

I went to the hospital today to practice putting the needle in the port (on a dummy doll). Very intense with sterilization. And starting Monday, I will be doing it for real. I will head to the Hematologist for them to supervise me. Then, we will have home health come out every day next week to help me give the clotting factor.

Eliah is still on 5 seizure meds, of which they will be weaning off little by little. But his EEG yesterday showed no seizures. So, we think we are pretty much in the clear.

As far as development goes, he is really trying to use his neck muscles, which is good. I think/hope it's just a matter of working out a little to build them up again. He has also started running marathons. Those legs go a mile an hour. He seems to have so much fun when he's wiggling. Maybe soon he will be ready for an exersaucer ....or solid food. Yikes!

But thank you all so much for the support, prayers and generosity. We have been so blessed to have friends and family that care so much.

LOVE TO ALL!!!!!!!!

Tuesday Morning Update

2007-10-16T11:12:00.001-04:00

So far, so good! Eliah's CT scan showed significant progress... he is reabsorbing the blood from his most recent head bleed. We'll have to continue to monitor him (via CT scans and EEGs), but hopefully a lot of that can be done with office visits as opposed to at the hospital. The doctors are now starting to talk about us going home... possibly later this week or early next week. Ann and I have to learn how to prepare his medications as well as how to put needles in his port / maintain his port. We're also going to have to learn CPR before we leave here, which is fine by me. I don't like blue babies!

Ann and Natalie are still sick. I think Natalie is getting better, but Ann seems to have just caught what she had. Boy I can't *wait* for them to get better!!!!! Nanny and Poppa have been a great big help, and I definitley could not have hung in here by myself without them coming by to relieve me each day. Some nights have been sleepless, and they let me take a nap during the day. And some days they let me shower, eat, and get some work done. All in all, I think we're all ready for all of this to be over, y'all.

Saturday Pictures

2007-10-13T23:15:00.001-04:00

Here are some pictures to brighten up your day!!!!!!!

Little Mr. Fussy-Pants has been... well... fussy. Although we are getting some good smiles and laughs from him, I think his fussy gears are starting to re-engage now that he is feeling better. We still have long long nights. Not nearly as exciting, but still long. Not that I'm complaining. I'd much rather him be fussy than blue.

We will be seeing the doctors over the next few days and Eliah will be getting more tests in order to monitor his improvement.

We'll let you know as we find out things, but the updates may not come as often.

Natalie has such a scratchy voice. We thought she wouldn't be able to talk... or at least not want to with a sore throat. Unfortunately for us, she thinks her scratchiness is extremely funny to hear... so she won't stop talking. I never thought she'd be able to more than she usually does, but I think I was wrong.

Mr. Fussy is asking for me again. Probably only another wet diaper. For the 10th time this hour.

- Kelley

Saturday Morning...........

2007-10-13T09:07:00.001-04:00

NO SEIZURE ACTIVITY!!!!!!!!!! = NO SURGERY!!!!!!!!!!!!!!

WOOHOO!!!!!!

THANK YOU FOR ALL THE PRAYERS!!!!!

Ann's Update Friday evening....

2007-10-12T20:01:00.001-04:00

Isn't my husband wonderful for keeping you all updated? I am now back at the hospital and lovin on my little boy. Nanny is taking care of Natalie for the time being. By the way, Natalie doesn't act sick at all. She's wild.

Anyway, Genetics called today and said that Eliah tested negative for CDG. That is what I thought he might have. To us, that is WONDERFUL news. CDG is a progressive disorder, and we definitely do not want that.

Since the surgery is up in the air, please send your thoughts and prayers that he doesn't have any seizure activity tonight. I am really having doubts about this surgery.

Thanks to everyone for thinking about us and keeping up with our story!

Friday Evening

2007-10-12T18:54:00.001-04:00

Ok, the surgery is on hold for right now. We are still scheduled for 10:15am tomorrow, but his EEG has shown *NO* signs of seizures today! The tech said he wasn't showing several of the "bad" signals that he has up until now, and that some of the "good" things they like to see have increased in quantity. We're going to play it by ear and make the decision right before he's scheduled to go. They're going to continue the EEG and see what it says for tonight, wish us luck!

If we do not have the surgery tomorrow, we may still need it in the future, only time will tell. There is some combination of drugs and healing that has caused the seizures to stop, but we're not sure which one is playing the more important role right now. If we don't have surgery, they will slowly start to wean him off the drugs while monitoring him closely to see what goes on. That should tell us how much the drugs have to do with this new turn of events. If he starts seizing again, we know it was mostly the drugs... and we'll have to re-evaluate things. If he doesn't seize as we wean him off the drugs, we know he's healing. They'll also be doing more CT (and possibly MRI) scans to help determine this.

Included in this update are two pictures. The first was from when we had just gotten here. The second (with the teddy bear) was from a few minutes ago.

We'll write tomorrow when we can.

- Kelley

Thursday Morning

2007-10-11T14:15:00.001-04:00

A few more smiles are included with this update. He seems to be smiling more and more these days... I think more than he did before we even came to the hospital.

I talked with the neurosurgeon this morning. It looks like surgery will be performed Saturday. They will burr out a hole about the size of a half-dollar. They should be able to get all the liquid blood they see... and will try to get any gelled blood (no promises). Also, we were told it is likely his seizures will get worse for a few days after. When they take out the blood irritation, they will be replacing it with another irritant: air. Air irritates the brain, too... but it does get reabsorbed a lot faster than blood. Hopefully, after 2 or 3 days, any air that gets in there should be gone. And, of course, they say there is no guarantee that removing the blood will solve the seizures that he has been having. It's just a "good chance". But then, there are never any guarantees with anything, are there? Once they are done, they will leave the hole in his head. It should provide an endless supply of jokes later in life.

Ann and Natalie are still at home, and will probably be there until at least tomorrow.

Wednesday Night Update

2007-10-10T21:53:00.002-04:00

We moved out of the ICU and back to a normal room today. This gave Ann a chance to straighten up and take home some of our accumulated junk. In the process, I think she may have taken home things I need to get pictures off the camera... so no pics today. But there is a one minute video of him having a good time again. We need all the smiles and laughs we can get.

The word now is that it seems the neurosurgeon wants to do a procedure on Eliah. We can't call it brain surgery, exactly, because he shouldn't be getting to his brain. He wants to drill a small hole in his head, and stick a big needle in to suck out all the blood they can get to. This should reduce the irritation on the brain, which should reduce (if not completely stop) his seizures, which should reduce his blood pressure, etc. A lot of "shoulds"... but I think Ann and I are ready for this next step. We're not sure when this will happen... maybe tomorrow, maybe later this week. But I get the idea that it will most likely be soon. After that, we'll be back in the ICU.

Natalie started running a decently high fever today (over 102), so she's at home with Ann. Ann also seems to have started a fever tonight, so we all hope that they take their medicine and get better by tomorrow... I don't know if I can do this alone! (Well, I know I will if I have to, I just don't WANT to!)

He's pretty fussy right now... I hope we both can get some sleep!

Tuesday Night Update

2007-10-09T22:34:00.001-04:00

Unfortunately, we are NOT home. Sorry for the confusion... the emails you received earlier were all from the LAST time we were in the hospital... about a month or so ago. For now, we're still here. Also, please forgive us for the amount of email that has gone out... I think we have now fixed that. Most of this stuff is new to us, and we are making some mistakes. Not getting much sleep does nothing but add to this.

So anyway, back to today. Not too much happened today. Eliah did not sleep at all last night (and thus, neither did Ann)... so he slept a lot today, while I was on watch. Which is fine with me. He did get the feeding tube taken out. However, he has not eaten hardly anything since then... we hope he does soon. We don't want him to have to go back on it, if we can help it. We also changed the needle that goes in his port on his chest. Ann and I have to learn how to do this, because we will be doing this on a regular basis once we do finally go home. He also got the EEG put back on his head... it will be there all night and into tomorrow.

About the only excitement we did manage to get today was a talk with the neurologist. After talking with another neurosurgeon, he now thinks a lot may depend on the results of the EEG tomorrow. Basically, he said if Eliah were in the same position, but did not have Hemophilia, they would already have performed brain surgery to help remove the blood in his brain. But the Hemophilia has been a major concern to the neurosurgeons. I guess it's tricky to work on someone's brain if they can't stop bleeding. Now, however, Eliah has been getting great big doses of his Factor VIII Hemophilia medicine, which allows his blood to clot like a normal person. Since his levels are way up and staying there, he should (in theory) be able to have surgery just like anyone else. Thus, if his EEG overnight shows that he is still having seizures, they will talk to us tomorrow about performing some sort of surgery. It most likely will involve drilling a small hole in his skull and sticking a needle in to suck the blood out. And if they do decide to do it, I don't know if it would be tomorrow... or a week or more from now. We'll find out and let you know.

He has, at least, been giggling and smiling a little more. Those are the parts of the day we like the best.

- Kelley

Monday update

2007-10-08T20:22:00.001-04:00

We have had a good day today, hopefully you could all tell by the video of Eliah laughing. We have been heading in the right direction with medications and he seems to be responding well. He has been taken off oxygen and is able to breath room air. YAY. One less tube/wire to deal with.

The EEG this morning showed that the 5 meds were a good combination. He only had one, minor, 30 second seizure. YAY. He was awake for a long time today and we played and interacted. He was also able to eat from the bottle today. They did not take the feeding tube out though, because he may need it over the course of the night. They plan on giving a couple load doses of medication during the night. The object is to break the cycle of seizures, then we can start backing off the medications.

The doctor came in this morning and said that his Hemoglobin had plummeted over the night. So they took blood for the genetic testing and gave him a blood transfusion. Then, his blood pressure went really high, so they gave him another drug to make him pee, in the hopes of reducing his overall fluid. The kidney ultrasound did not show any problems, so we are back to square one with his blood pressure. It's still just too high to be normal. Today it ran around 150/75, even after the "pee drug".

When I was talking with the Hematologist, he again said that this is not typical of Hemophilia. He also said that if this had been an adult, with this amount of bleeding and seizures, they would be dead. So he has been amazed that Eliah is even around, much less alert and active. He then went on to say that all the doctors believe that there is an underlying issue with Eliah, beyond the Hemophilia. He says that they have exhausted all their resources as to finding out what's going on with him, with the exception of Genetics. He suggested that we go to Emory in Atlanta or Duke in Chapel Hill to see specialists that can search deeper.

The genetic testing should hopefully come back on Friday, but we don't know if they will have answers for us. The Neurologist still wants to do a Spinal Tap to test for other genetic disorders this week. He also wants to do another EEG tomorrow to see if we have completely stopped the seizures. If we have, and all other things go well, we can once again leave the ICU. We have a tentative plan to leave the hospital altogether by Friday or Monday. We still have to learn CPR and how to administer his clotting factor before we leave.

The Neurologist was explaining to us about the calcifications on Eliah's ventricles. It is more likely than not that it is due to a disorder or syndrome. We just have to narrow down what it is. The only other possibility for the calcifications is intra-ventricular bleeding on his brain. However, it's not consistent with the other bleeding, and does not account for the small size of his brain.

We are trying to be very optimistic and realistic at the same time. We hope for a life of normalcy for Eliah, but we are prepared for a high level of care. I believe all the prayers got him through the last week, and we hope that those prayers will get us through many years to come.

Thanks again for keeping us in your thoughts.

Laughing

2007-10-08T14:21:00.001-04:00

For those getting this in your email, a short video of Eliah laughing this morning can be found on the blog (http://eliahjames.blogspot.com) here.

Eliah laughing:

A few short videos

2007-10-07T21:45:00.000-04:00

Here are a few quick videos from our stay at the hospital over the past 10 days. If you are getting this in your email, the videos below may look like a bunch of garble-dee-gook, or they may not show up at all. If you can't see them, you can always go to http://eliahjames.blogspot.com (click here) and see them there.

Eliah - Seizure activity in the ER

Eliah - Getting hooked up to the EEG (1 of many)

Eliah - Feeding Tube

Sunday's update

2007-10-07T19:45:00.001-04:00

Why hasn't anyone told me that my days are messed up?

Anyway, Sunday's update:

Eliah is resting semi-comfortably now. He is now without EEG, thank goodness. And we gave him a bath today. But he still seems to be in pain. Because he cannot talk, we have to go by his heart rate and blood pressure to determine his comfort level. His blood pressure, for his age, should be around 90/50. Today his blood pressure hung around 169/87. Much higher than even an adult. So we really don't know what to do.

We gave him Ativan to calm him down. But a lot like his father, Eliah had the opposite reaction to the medicine. As soon as he got it, he got completely anxious. So we called the doctor and he approved Morphine again. We just don't understand why he would still be in pain. The surgery site should be mostly healed by now. And the blood on his brain should not be causing so much pain. The doctor wants to do an ultrasound on his kidneys tomorrow to see if anything is going on there.

The EEG last night showed that Eliah is still having seizures. He had approximately 30 over the course of the night. So, they have added a 5th anti-seizure med. The Neurologist said that we are not yet to this point, but they will be considering putting him into a chemically induced coma so that his brain will calm down. There is risk involved with waking him up though. Again, we just don't know what to do.

I doubt it, but there is a possibility we will be getting out of ICU tomorrow. Eliah has stopped his apnea, and his Factor VIII level (clotting factor in his blood) is WAY above what they expected. They are just trying to control his seizures at this point. They will be putting the EEG back on his head in the morning to check for seizures again. And doing the ultrasound of his kidneys. Other than that, it's just another day at the hospital. I'm just glad they're feeding him now. He seems much lighter to hold now. It's a good thing I started with a fat baby. He must have anticipated the need.

As if I need to ask, please keep Eliah in your prayers. And thanks for all the wonderful comments. They definitely keep us going.

Quick update Friday:

2007-10-06T18:02:00.001-04:00

Eliah had a decent night. He only stopped breathing about 20 times. But we learned not to jump up every time. He eventually starts breathing on his own, without his oxygen level dropping. He has also been on oxygen to help with his breathing.

As far as today goes, he has a low hemoglobin level. Which means he is anemic and will need a blood transfusion in the next couple of hours. We had to do another CT to make sure that there was no new bleeding. They just keep taking so much blood for labs, that he is running low.

Also, he is taking a small break from the EEG. He still had seizures all night. They have upped his medications AGAIN, and they are adding another to the mix. He had about 50+ seizures through the night. We are just trying to override the seizures, while waiting for the inflammation in his brain to settle down. Today's CT did show that some of blood is starting to resolve, so it may be just a matter of days until we can control the seizures.

We are not looking forward to hooking up the EEG again tonight though. The skin on Eliah's head is starting to break down from the electrodes. It's a double-edged sword. We don't want to hurt his skin, but we have to know if he is having seizures.

They will also be putting a feeding tube back in, so he can get some nourishment. The feeding tube will go up his nose, down his throat, through his stomach and into his small intestine. That way, he gets calories, but his stomach will be empty in case they have to intubate him. But we think between the feeding tube and the blood transfusion, he will start feeling a little bit better.

Thank you to everyone that keeps Eliah in your thoughts in prayers. There is no way to repay all the kindness. Please continue to pray.

(Update: no transfusion tonight. His hemoglobin actually came up a little... so they are going to wait until Monday, when they have to draw a lot of blood, to determine if they will do a transfusion or not.)

Update Thursday night:

2007-10-05T20:31:00.001-04:00

Wow. This is not a fun roller coaster. As my wonderful husband said, we are back in ICU. After Eliah's near death experience last night, they did a chest x-ray this morning. And then hooked him up to another EEG. He does this great thing where he goes into a deep sleep, has a seizure and then stops breathing. We have to jump up and stimulate him to breathe again. This has happened about 20-25 times today. They have upped his Phenobarb again. He is taking a huge amount of seizures medications that, again, we are looking for a coma. Nurses are standing by to intubate at a moments notice.

The Neurologist spent about an hour with us today and, as much as I love him, made us feel no better about what's going on. He doesn't know why his seizures keep breaking through. Eliah may be resistant to medications like Kelley is a lot of the time. Anyway, he went over the old CT's with me, as well as the new CT's and the MRI from yesterday. The MRI is so pitiful. There is blood all over the left side of his brain and kind of pooling down at the bottom. Up until this point, the blood was just on the surface of the brain. Now it seems that the blood has entered part of the brain matter (the important stuff). That's the grape sized "something" I was talking about. Except by the time they did the MRI, it was much larger.

The Neurologist said that the darkened area could be a stroke or a blood clot. And it is surrounded by a lot of swelling. A normal brain looks like waves and grooves. The area around the darkened area is all swollen and puffy. This is causing pain and seizures. He told me that if it is a stroke, then the brain around would just liquefy over time, but if it's a blood clot, the swelling may go down and could just be normal tissue again. He is leaning towards blood clot. Me too.

We also met with the Geneticist today. He asked a million questions and listened to my crazy theories. He admitted that he does not know much about Glycoprotein disorders, but he would be happy to test. We will probably start testing on Monday for chromosomal problems, metabolic disorders and Jaeken syndrome (my theory). We should know some answers on Friday. He took me seriously and is interested in learning more about Jaeken syndrome. He wants me to email him with the links to articles citing their connection to Eliah's symptoms. Luckily, I have them all bookmarked, and memorized.

We have no idea when we will get out of the hospital. Eliah's seizures have to stop first. The next step is feeding him. He has not eaten since yesterday. And he fasted most of yesterday for his MRI. I don't think he has even eaten 24oz in the last 60 hours.

After that, it's healing from surgery, trying to wean off meds and trying to get a little normalcy before we can think about heading home. And as much as I feel bad for Natalie, she has been having a great time with Kelley's parents. They have been kind enough to take care of her, bring her to the hospital to visit, and deliver meals to the hospital. We could not be able to do any of this without them.

Well, I think that's all I know for now. As you know, I will try to update as things happen. Please keep praying for my boy!

Update 3

2007-10-05T11:02:00.001-04:00

Ok, another quick update. We're in the ICU now. Due to the amount of times he's stopped breathing and the amount of seizures, they wanted to move him to a place where he has more people around to monitor him. He was given Phenobarbital again, and this (as of now) seems to have subdued and sedated him to the point where he might finally be getting rest. He still is having activity on the EEG, but it's not as big as it was, and it doesn't seem to be breaking through (making him cry / wake up). His breathing hasn't dipped down, either, since he got the Phenobarb.

But he can't stay on Phenobarb forever.

More as it comes...

- Kelley

Quick Update 2

2007-10-05T09:39:00.001-04:00

We're headed back to ICU...

A Quick Update from Kelley

2007-10-05T09:32:00.001-04:00

It's been a very restless night. When Eliah stopped breathing last night, he was in the middle of a seizure. His head turned hard to the side, which we think caused pain because he was bumping up against his new port. That made him cry out... the kind where he opens his mouth in a silent scream, and also holds his breath for a few seconds. Except he didn't take a breath in. That was the blue episode, in which about 20 people filled the room after some frantic screams down the hall. Doctors and nurses from our floor as well as the floor below all managed to make it to our little room. They had to put the breathing bag on him to get him going again.

Since then, he's been having little "non breathing" episodes about once an hour. He's trying to sleep, but once he gets to sleep it's as if he either forgets or gets too lazy to breathe. He gets down to about 1 or 2 breaths a minute, at which point an alarm goes off and we shake him gently. The machine detects his breathing rate pretty quickly, so he's actually only at this rate for about 10-15 seconds maybe, before we jump up and remind him to please breathe. It's more like sleep apnea than anything, as far as we can tell and going from what we hear nurses/doctors say.

Other than that, he just got hooked up to another EEG, and the tech said he was seizing from the moment he turned it on. He's calling the neurologist now.

It's a waiting game. One that nobody likes to play.

Ann will send a better update when she gets a chance.

- Kelley

PLEASE HELP!!!!!

2007-10-04T23:14:00.001-04:00

Eliah is in critical condition right now. He stopped breathing and completely turned blue for more than a minute. That was the scariest moment I have ever experienced. I kept screaming down the hall for help. All the other mothers ran out of their rooms. Thank God I had a nurse in the room with me when it happened, or he wouldn't still be here.

He is having major, seizure-related problems right now. And they are unable to control them.

PLEASE PRAY!!!!!!!!!!!

Thursday Update

2007-10-04T19:59:00.000-04:00

My poor little man. He is in so much pain. He woke up this morning and wasn't even able to cry. His legs were shaking and he was making a screaming face, but no noise came out. His voice is hoarse from having a tube down his throat during the surgery. And he can hardly eat because it pulls on his neck muscles. He has only eaten about 9oz since last night at 6pm. He is just getting his morphine and sleeping.

We were able to get the MRI and MRV done today, but I do not yet know the results. They were looking at a small, grape sized "something" (my technical term) in his brain mass. They said it may be a stroke, blood clot or calcification. So, as you can imagine, I am anxious to hear what they found.

Tomorrow we do another EEG, but I don't foresee any problems with that. Eliah does seem to have seizure activity, but they don't worry unless the episodes last longer than a minute. They will try to gradually wean him off two of the anti-convulsives before we leave.

And we are definitely here until Monday. Ugghh. I have had enough hospital food to last a lifetime. I am down 5lbs since we got here (which is actually good). If we stay here another week, I will probably hit my goal.

The new port is working great. Now, when they come in at 4am to do labs, I don't mind. No sticking, they just attach a tube and go. I am so thankful that he has one now.

But please, please, please pray for Eliah to get some comfort and some food. And pray that Pediatric Surgical Residents (newbies) start to show some compassion at 5:30am and not come in yelling. They just don't get that the children in a Children's Hospital need some sleep.

Surgery Update

2007-10-03T20:19:00.001-04:00

THE SURGERY WENT WELL!!!!! Thanks of course to all those prayers!

Eliah went into surgery around 3:30 pm, the surgery lasted approximately 30 minutes, and he was in recovery and back up to the room by 5:30. The surgeon would not let me in to watch, but he did come out right after and told us that Eliah was great. He said that it looks good enough for him to go home tomorrow (even though we know that is not going to be the case).

But he woke up and ate. He seems to be in really good spirits with intermittent pain. We are currently waiting for the nurse to bring his morphine. We may be waiting a while though, the hospital has become extremely busy with patients. There is not a room free.

We will also be taking out the IV in his arm and transferring it to the port. On the outside, the port has just a little needle in it, with an IV catheter. The port itself is made of titanium (we got the good stuff), and we look forward to setting off metal detectors. Here is what it looks like:
http://en.wikipedia.org/wiki/Port-a-Cath

Right now, we will rest and recover. There is a possibility that we will do the MRI & MRV tomorrow, and another EEG at least by Friday. Talking with the Hematologist today, he thinks we will be here through the weekend. But if Eliah does great, we may still go home Friday. Let's hope.

On a side note: I do have some concerns already about reversed development with Eliah. Everything seems to be normal with him, except he has lost the ability to lift his head. He has great arm strength, can turn his head back and forth, and push his head backwards. He is just unable to lift or hold steady. I have been telling doctors for a few days now, but they keep saying that it's due to the meds or just being on his back so much. Today, finally, a doctor acknowledged me. We talked about developmental delay, and that this could be reverse development due to his brain damage. We have a range of possibilities for him. First, the doctors could be right in that it is just meds, being tired or whatever. Second, it's possible that his delay may just be slowed now. He may be on his own schedule to re-learn these things. Thirdly, it is possible that he may never be able to lift his head again, which, in that case, would never crawl or walk. But working with him now is basically like a newborn. We have to hold his head up or it just flops back. We just don't know what to expect yet.

But thanks to EVERYONE for all the prayers and good thoughts. We will keep you all updated as things happen.

Monday Update

2007-10-01T16:10:00.001-04:00

Slow going here. Eliah had an EEG and a CT scan this morning. I have not gotten the results back from the CT yet. But the EEG showed a little bit of questionable activity, so they have upped his medicine again.

After fasting Eliah for 8 1/2 hours today, the surgeon came in and said, "Yeah, we are not doing the surgery today. We may be able to get to it by Wednesday or Thursday." It seems that Eliah's surgery is not urgent and is the first to get bumped when new patients come in. We will also be here in recovery for 3-5 days after the surgery.

By the time we get out of here, we will have spent about two weeks in the hospital. I can only imagine the bill we will get for this. And the mess of a home-life we will go back to.

They are going to wait to do the MRI until after the surgery, so they can just use his port to administer the sedative. But they are going to be looking at a questionable area in his brain. They think it could be a blood clot, stroke or calcification. We will see.

On a side note:

I feel so badly for Natalie the most during all of this. She is so used a routine, and this has just messed it all up. Plus, it we have to rely so much on others to maintain life outside the hospital (ie. getting Natalie to school, feeding the dogs, doing laundry, etc). And our main source of help, Kelley's mother, has gone and possibly seriously injured herself; in our yard no less! We will soon see the extent of her injuries and it's affect on how things have been running since we've been in the hospital.

I think things will be pretty quiet here until we have the surgery, so there may not be an update tomorrow. Please keep up the prayers!

Sunday

2007-09-30T17:26:00.001-04:00

Eliah had a good night. They woke him up around 4am to do labs and he woke up smiling. He opened his eyes and was talking up a storm. Lot of cooing. We played until about 5:30 and then he went back to sleep. He was even laughing, but it was VERY subdued. I think the food is really helping him.

All is well at the hospital. Eliah's seizures have stopped. He is now taking food from the bottle, so the feeding tube came out. We gave him a tub bath and he just LOVED it. As of right now, he is sleeping soundly.

But nothing is really happening today. We will be doing another CT scan in the morning to determine if he has swelling. Also, Genetics should be coming tomorrow to do their own set of testing. To my knowledge, the surgery to put in the Broviac port is in the pipeline, but may not happen tomorrow.

One thing of interest though. My sister's daughter has an unknown metabolic disorder that, as I understand it, affects her conversion of protein in the body. When I talked with the Neurologist today, he found this to be extremely interesting. He apparently has a niece with a metabolic disorder, and her cousin has Hemophilia.

As I have been doing my diligent research on the internet, I have found a fairly new disorder that may account for both children. It is very easy to test for, so I will be asking about it tomorrow. But you know how the doctor's like to be told how to do their jobs. So, I will hopefully not be stepping on anyone's toes.

I will update as I can. And definitely, put us on any prayer list you can!

Eliah Update Saturday Night

2007-09-29T19:11:00.001-04:00

Update Saturday Night

Last night was a little rough. Eliah had seizures that started around 1am and came every 20 minutes. Then, by 3am, they were coming every 2-3 minutes. They have increased a couple of his medications, added an antibiotic and also gave him the equivalent of Valium. He is pretty sleepy, but is very responsive to touch.

We also had another CT scan this morning, followed by the start of another 24hr EEG. We talked with the doctor after the CT, and he is still waiting at this time to talk with the radiologist, but this is what he thinks. First of all, he is AMAZED, based on the seizures, amount of blood on his brain, and the medications, that Eliah is not currently in a coma. He fully expected that to be the case. He said that Eliah's body is coping very well with the stress.

The doctor sees no change from yesterday's CT, which is good. He explained that about 3-4 days after a brain injury/bleeding you will see swelling. If the swelling puts too much pressure on his brain, they will need to operate and drain fluid. So far, he is holding steady.

He blew his IV today and they had to put in a new one. And of course, it took a couple sticks, in addition to the many, many blood tests they are continuing to stick him for.

Eliah has been placed on a feeding tube in the past hour and seems to be holding down the food pretty well. I was very anxious for him to start getting some nutrition so he can get stronger. A far cry from yesterday, he has got a lot of "fight" in him today.

That's about all for now. We are still waiting for the "official" results from today's CT scan. And they have added another MRI to the list of tests to perform in the next week.

Thanks again for all your thoughts and prayers!!!!!!!!!!!!!!!!!!!

Deja Vu all over again

2007-09-29T16:03:00.000-04:00

The easiest thing for me to do is simply copy and paste a message that Ann wrote yesterday. It should answer most questions that come to mind.
Here it is:

If any of this is incoherent, it's because I have not slept since 1:45am Wednesday night. I'm a little tired.

We have been in the Pediatric Intensive Care Unit with Eliah since around 12am Friday morning. Eliah was cutting two teeth this week, so I of course I thought the fussiness and slight fever were normal. Well, Thursday night he was sleeping and looked like he was dreaming. Then, it just didn't feel right, so I tried to wake him up. He was unresponsive. We called the Neurologist and he said to give him his seizure medicine and head to the hospital. We arrived at the ER around 11:30pm and his seizures were very apparent. His head was bobbing and his right arm was shaking. Needless to say, very scary.

They took a CT scan of his head and admitted us to PICU. They have determined that he has new, significant bleeding on his brain. According to one of the many doctors, there is a lot of blood in there. The blood basically works like sandpaper on the brain matter and causes seizures. Also, the bleeding caused him to have a fever of 102.3 and he was just shaking uncontrollably. We have seen a Neuro-surgeon who may want to remove the blood buildup, but he is not very familiar with Hemophilia, so he is concerned about causing new bleeding.

Also, they have been unable to stop the seizures. Eliah is on three different medications; massive doses of anti-convulsive and they are still breaking through. He has been hooked up to the EEG and they are recording all the seizures. Also, he is comatose from the last medication they gave him. The doctor really wants him to be "knocked out" for the next 2-3 days to stop bleeding and seizures. However, they have to keep close eyes on him to make sure he continues to breath. They may have to put him on the ventilator.

In addition, they believe that fluid is building up in his brain causing pressure, AND his brain is shrinking. Both, as you can imagine, are not good things. As we expected, we will be watching for developmental delays. Once again, we are on the roller coaster.

Updated Friday evening:

Let's get down to it. It appears that his brain is still smaller than what it should be, BUT, it is much larger than it was a month ago. There is less fluid, the ventricles are smaller, and the brain mass is now growing towards the skull. That part is great!

The bad part, he has 3 layers of bleeding on his brain, a current bleed from 2-3 days ago, one from about 2-3 weeks ago, and one from around birth. The whole left side of his brain is covered in a lot of blood. So much in fact, that it is pushing in brain matter on the side. This is the irritation that is causing these seizures. They measured about 10-12 in the 4 hours they did the EEG.

So what the doctors are wanting to do now is potentially put in a shunt to drain spinal fluid from around his brain down into his abdomen to be absorbed by the body. Which will give his brain the opportunity to grow more as it should. That procedure will be discussed over the next couple of months. The blood in his brain would not be affected by the shunt, and hopefully will just absorb or disintegrate over the next 6 months to a year.

Immediately, the Hematologist will be surgically implanting a Broviac port so that we will be giving his clotting factor three times a week to prevent new bleeds. That will probably happen on Monday.

They are also monitoring him for more seizures. He seems to be doing okay, just sleeping all the time. He hasn't eaten since 2:30am, but he is on an IV so it's not so bad.

Also, (will the fun never end?) they are probably going to do a Spinal tap when he is feeling a little bit better to test for infections as well as some neurological disorders. We really don't know when that will happen.

That's all the info I have for now. Lots of love to all and please keep us in your thoughts and prayers!

Home Again....

2007-08-29T09:13:00.000-04:00

We are home!!!!!!! I forgot how messy I left the house.

Eliah is doing well. When I put him in the car, he woke up, looked around and smiled, and went right back to sleep. He slept for 6 hours straight. Then ate like a horse and went back to sleep for 4 hours.

I cannot thank you all enough for your support. This has definitely been a challenging time for our family, but I feel like it's something we are just meant to deal with. I think/hope we are equipped to deal with it.

My father tells me that all of this could not happen to a better family, and I usually sneer at the remark. But he means it in the nicest way. He says that it's better that we deal with these challenges in a loving way, then some other family that just doesn't care for their children. So, I guess that's a good way to look at it.

You have all been wonderful to me! I tear up every time I read a comment. THANK YOU! THANK YOU! THANK YOU!

Now, onto bigger and better things......like losing weight, cute baby pictures and new milestones!!! I love you all! THANK YOU!

Update #4

2007-08-28T09:12:00.000-04:00

Update #4
Well, we are still at the hospital for one more night. He is finishing up his 24hr EEG and we should be able to leave in the morning. We have talked extensively to the Hematologist and the Neurologist today. I don't think I have ever asked so many questions. I believe I have a good understanding of what is going on. With that being said, there is not yet a definitive answer to what's wrong with DS.

Here is what we now know. The MRI shows that DS has a small pool of blood at the back of his brain. Also, he most likely had a prior bleed in the same place. The bleeding has indented or pushed in that part of the brain (the missing part I was talking about) and caused it to scar. He also has a lot of calcium at the top of his brain which is probably old blood that turned to calcium. This bleed probably happened in the womb or during birth. No way to know for sure. That makes three bleeds in his brain.

The Hematologist also believes that the calcium deposits on the inside of his ventricles on his brain are also old blood. The Neurologist isn't yet sold on this idea though. He still wants to do genetic testing. However, he said that these are not tumors, which is what they would have to be, to be a genetic problem. Plus the likelihood of having two rare genetic disorders would basically make DS an anomaly.

The CMV test came back negative. And the toxoplasmosis came back negative. There has been no evidence of Rubella either. So the congenital infections are ruled out.

The smaller brain could still be within the normal range, based on what the doc is saying. The Neurologist said that the surface texture and grooves of the brain look normal and that we should not expect to see any major developmental problems.

The plan at this point is to get a port (internal central line) put into his chest so that we can preventively treat his Hemophilia three times a week. This will hopefully stop any bleeding and we could potentially qualify for Soc security, of which we would put into a future fund for DS.

So, after this emotional roller coaster, it seems that it might all be something we can handle. He will continue to take his seizure medicine for months if not longer. And we will monitor him to determine if he has any delays. But for right now we breath.

Thank you all so much for keeping us in your thoughts and prayers. I believe it helped.

Update #3

2007-08-27T09:11:00.001-04:00

Update #3

And the saga continues....
First they switched the MRI to today and the EEG to tomorrow. Then Hematologist came back in today after the MRI and said that going back over the CT and the MRI, it seems that DS did in fact have bleeding on his brain. He said that there was a hematoma right at the top of his head and there is a little bit of old blood there. So he is putting him back on the Factor VIII (which by the way is $700 per shot and he is getting every 8-12 hours).

He also said that everything and everybody is pointing to CMV. However, the Hematologist has doubt. He thinks that everything that is going on relates to Hemophilia. He is going to "pow-wow" with the Neurologist tomorrow and go over all the tests. We should have some lab tests back by tomorrow or Wednesday.

If it is CMV, I don't understand how I could have gone this long without getting it. I'm 34yrs old, for 10 years I worked in a day care setting and I also worked in assisted living. Approx. 85% of the US has this virus already, and it's passed just like chicken pox or mono. Plus, I have been pregnant 3 times before this. It just doesn't make sense that I would just now be getting it. (sorry for the rant)

We are supposed to get another update from the docs in the morning. If it's interesting I'll post. But if they are just sitting around saying, "I don't know, what do you think doctor?", I won't post.

Thanks again for all the well wishes. It feels so good knowing there are people out there thinking and praying for you.

Friday Update

2007-08-24T09:10:00.000-04:00

Okay, the Hematology Dr. came in this morning and said that there is no evidence of internal bleeding based on the CT scan. It's possible that DS had a very small bleed (for instance, his front gum was purple where a tooth would be coming in). DS is hypersensitive to touch, smell, sound and temperature. He probably went nuts over something small.

We are still going to be here in the hospital, probably till Wednesday. The Neurologist is planning a 24hr EEG for tomorrow. There is an MRI scheduled for Tuesday morning. Today we have nothing planned, we just have to sit and wait (and look up scary info on the internet).

I will update when I have new info. And thanks so much for the prayers! We need them!

________________________________________________________
Update #2

Okay, the Neurologist spent a long time with us today. We went over his CT scan of his brain "bit by bit". When they said his brain was a little bit small, I thought he meant a regular brain but just a little bit smaller. NO. A normal brain basically comes right to the edge of the skull. DS's brain seems to be missing parts, especially on the left side. Completely not what I expected.

He also said that the calcifications on his brain are not tumors, which is really what we were hoping for. They can remove tumors and he would be able to have a somewhat normal life. Now we pretty much know that this is the result of a virus that I must have acquired during pregnancy. I think CMV is the worst case scenario for us because we understand that seizures only happen in extreme cases. And problems with CMV can get progressively worse as he ages.

Nobody is really speculating yet as to what is going on, but with tumors ruled out, that takes away pretty much anything else that causes calcifications on the brain.

I believe everything happens for a reason. It's just my job to adapt. Not always easy, but I have a great support network (including you wonderful, wonderful ladies!) and a compassionate, loving and understanding husband. I don't think I would be able to handle any of this without him.

Also, if you want to see what the EEG looks like, click here.
http://picasaweb.google.com/duty10f/EliahJames
Scroll down to the bottom, and click on the very last pic of DS. The video may take a minute to load.

In the Hospital

2007-08-23T09:08:00.000-04:00

Well, if we didn't have enough problems with Hemophilia, we are now in the hospital for another reason.

It all started on Tuesday. DS (who is now 12 weeks) was really fussy and seemed to be spitting up more. He also seemed like he was in pain every time I picked him up. I really thought it was food related since our whole family just had a little bug. So I treated him with Mylanta. No change. I waited to see if he would get over it, but never did. By Thursday morning he seemed to be in a lot of pain whenever I picked him up. So, I think, okay he has some internal bleeding (not uncommon with Hemophilia). I called the Hematologist and he said to bring him in.

While the doctor was checking DS out, he notices that DS only looks to the left and isn't focusing. Which indicated to the dr. that it may be a head bleed. So they set up a CT scan to find where the bleeding is. Meanwhile, they set up an IV and pumped him full of the Hemophilia medicine (Factor VIII). The CT scan did not reveal bleeding in the head... but it did reveal something else. It seems that he has enlarged ventricles, a slightly smaller brain than normal, and calcium deposits lining one of the ventricles.

They brought in a neurologist, who thinks that DS was subjected to a viral infection in the womb. Further, he thinks that his only looking to the left and eye movement are seizures. He hooked up an EEG and last night recorded two seizures, about 13 minutes long for each. So now, they have him on seizure medicine. He also believes that he had a seizure on Thursday that lasted approx. 12 hours.

The hematologist still thinks there might have been a bleed, though... so we just got back from another CT scan of his neck and back. They're also doing blood tests to determine which viral infection he may have had early on. So now it's pretty much a waiting game to determine the cause. The effect, however, is a different story. From what we understand, regardless of the cause, it's just going to be a waiting game as he gets older to see what the effects are. Some who exhibit these brain characteristics seem to be able to grow around it and are not effected. Some end up severely retarded or have Cerebral Palsy. The only way to know is to wait and see.

We will be here in the hospital until at least Monday. They have started him on anti-seizure medication. They are continuing his Factor VIII every eight hours, and we are still giving him Zantac for his reflux. They plan to do an MRI later this week and they are going to hook him back up to the EEG to make sure they are stopping his seizures. If they aren't, they will have to move him to a different medication which may have physical or mental side effects.

We are also waiting to be contacted by a Geneticist to test for chromosomal abnormalities. There are so many possibilities that this could be. Regardless, he does have brain damage, we just don't know to what extent or how it will affect him. We are trying to stay informed and asking many, many questions. But, like I said, it's just a waiting game.