12 blurry months...

It was a year ago today that I wrote this. I can't believe it's been a year already. I was actually washing the dishes today when it dawned on me and I became so over whelmed I started to cry. The feelings of that day washed over me, the panic and fear felt like it was going to swallow me up once again. I had to take deep breathes and call a close friend to share my feelings with her. We talked about that day, and the days and months that followed, then we moved on to how far we have come. How well he is doing on his special diet. How amazing he is. How inspiring the whole situation has been for so many people around us. After that I really calmed down and spent the rest of the day reminding myself that it is not a sad day or a scary day any more, it is a day to give thanks and remember how far we have come. We had some family over and shared a nice meal and I made him his favorite magic diet foods and it was wonderful. So perfect. I love that today we took a day that 12 months ago threatened to rip us apart and leave us blowing in the wind, and we turned it around into a beautiful day of remembrance and thanks. I am so thankful. So today I will end this day on my knees, but I won't be pleading, I will be giving thanks. With tears of joy.

Wish for things

Atty has an appointment at Children's this Tuesday.

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His doctor and I have discussed on the phone the possibility that Atty might have Mitochondrial disease. Something I brought up to his pediatrician almost two years ago.

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He will possibly be tested on Tuesday.

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It's a muscle biopsy.

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I want all this to end.

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But I also want more answers.

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Some help, not just medicine, some real answers, long term solutions.

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Some healing.

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I hate that he has to go through all this.

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He's only three.

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I want to take it away...I want to suffer for him.

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He's having drop attacks again.

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I'm not handling this very well.

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Actually I'm quietly falling apart.

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I hate hearing him crashing to the ground.

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head cracking on tile floor.

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Cries of surprise and pain.

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Hate watching him watch his brothers play.

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With a blank look on his face.

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When your child's neurologists tell you that your child is baffling...it's not good.

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When they say they wish they had some better ideas, but to be honest there winging it at this point...it's scary.

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We are running out of medicines to try.

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They have mentioned brain surgery once already.

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It bugs me that he can't eat what everyone else is eating. I know that sounds minimal next to brain surgery, but it's an every day frustration.

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Especially when he doesn't want to eat his special food. I just want to be able to give him the food I know he would love to eat. Regular ol' bread, yogurt made from cow's milk, etc...

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I feel frustrated when he doesn't eat the food I make him, from freaking scratch because I have to...(because he can't have wheat, gluten, any dairy or coconut)

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I really want him to be able to enjoy his food (he does like some of it), but it's hard to make something yummy from my options for him.

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he's losing weight and not eating very well at all. It's starting to scare me.

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I want him to be healthy.

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I hate that the word seizure is common place in our house now.

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I discovered more of the cafe-au-lait spots on his body. They only mean one thing NF1. Why that too? Why did he have to inherit both things from his birth mom. Why?

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I can't stand all the doctor's appointments and paperwork.

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Blood work. Making a sweet tempered little boy sit still over and over again while they poke a needle in his arm. I hate needles. I can't even watch.

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Medicine. Three different medicines. Two times a day.

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Fussing and crying during the night. Not sleeping well at all.

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I find myself breaking down praying and crying at random times during the day.

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I wish we could go back to the way it was just a few sort months ago...minus the food allergies too while I'm wishing for things.

Updates and ramblings

So I have been meaning to blog about this for a while now. Atty had his six week check up at Children's a couple weeks ago. I got to take all four kids. By myself. An hour each way. To the hospital. At lunch time. Through nap time. Tiny office. Waiting. Waiting. More waiting. I'm not going to lie to you all I was scared. So scared I planned ahead and even bought special supplies to entertain team *R* (as we call ourselves). I added in lots of extra travel time so that when we got parked in the parking garage we still had time to eat a lunch I had packed in the van where they couldn't run around and get distracted. I always like to add in extra time to nurse the baby too, which is never easy in public with three other little boys. That all went smoothly except they got food all over their clothes (of course) and so they looked nothing like their prior clean selves by the time we had to go in. Oh well at least their bellies were full...they listen better that way. Gave them a little pep talk about how we are a team and we've got to work together, did the team hand shake and away we went with a silent prayer for my sanity. All actually went well. I was so proud of them. Towards the end of the office visit they got a little squirrelly but I really just felt for them at that point because we were all feeling very Done myself included. The new cool pens and paper pads for each that I got worked to entertain as well as the special snacks I packed (do you see a reoccurring food theme here). We sang songs while waiting and I wrote words to sound out on the dry erase board in the office which they enjoyed. The harder part was when the doctor was in the room talking with me because they would then start to try and get my attention (or the doctor's) at times and that was a bit frustrating. Just because I really need to hear and process what Atty's doctor was telling me. The only time I started to sweat it was when two doctors were in the room towards the end of the visit and all the boys started to act out in different ways at the same time and I had to address the behavior while the doctors waited, just so that I would be able to hear. Sort of embarrassing. We survived though. I even had to take Atty to get A Lot of blood drawn at the end of the visit and not only was he amazing through the whole thing (which was awful, the vein blew before the guy got all the blood he needed for the tests, so he went to do the other arm and it didn't work and then he settled on the finger poke and squeeze to finish.) his brothers were also. I was distracted and sad when we left because there was a lot to think about and because they had decided to drastically up Atty's medicine which had me scared. They were even thinking about hospitalizing us again. I just wanted to cry. And yet I felt so overwhelmingly thankful for my wonderful children. I let them know how amazing they were and how their team work help me out so much and made an other wise hard trip easy-peasy (as easy as a trip with four littles can be). They felt pretty stinkin proud of themselves, as they should. We even got some pictures. Bubu's new favorite face. Ugggg. Look at Atty's great smile...even after getting all poked up. He got a new duck, his favorite thing ever, and he was loving it! I gave it to him when he was getting the blood draw to try and sooth things over. His brothers were so sweet about it and didn't fuss at all about the fact that Atty got something and they didn't. Which is hard for little kids to understand usually. I know that one well, I usually always have to buy three of everything! Which is why they rarely get new things, ha, ha!!

Oh and that stroller, yeah, it stunk. So embarrassing. It stunk and it was dirty and musty. I haven't used it since we moved and it's been stored out in the shed the whole time. I dragged it out the night before in the dark and shoved it into the van to be all prepared ahead of time. So I didn't notice the funky smell until I pulled it out and opened it up to go into the hospital. Atty wasn't walking very well at all at that point and I couldn't carry him and put the baby on my back, and hold onto Bubu and Spike, and carry every thing else too, so I had no other option but to use the nasty thing. Pretty humiliating. I guess we should have gone by the name of the stinky *R* team. Dirty kids, stinky stroller, can't get much better then that. At least they were well behaved little hill billy's.

So this is were we are at. For now. Three medicines and one that we went up on drastically. He has to take three of them in the morning and two of them at night. He was taking the third medicine at night but after a few days of that he started getting insomnia worse and worse to the point that he slept only about three fitful hours one night! I called and told them that between the little baby and a boy with insomnia I wasn't going to last so they suggested switching the med to the morning and that has been working a lot better. Atty is so tricky, any medicine that is suppose to be a sedative will make him hyper. This medicine that was keeping him awake is suppose to make you super drowsy which is why they wanted him to take it at night. He's got weird body chemistry I guess. I was reading in the side effects of this particular medicine that a small % of people got insomnia in the studies, and so of course Atty does too. He seems to like to fit into those small percentages. All the meds say that they make you drowsy, which they do make him act sort of "drunk" and fussy they just don't knock him flat like they do for others. Which is amazing considering how much medicine is being pumped into his little body right now. I have to admit I don't like it. I really don't. I do like that he is now (as of today) not having any seizures. Of course I like that. (Except for the tonic spasms he's still having those but that just comes out as a noise he makes.) ~I don't like that it is just suppressing the seizure activity not actually solving the problem (which I know they don't know how to do being as the brain is still such a mystery and all). I don't like suppressive medicine, even things like fever suppressors (I know, I know) I'm not going to get into a big long reason of why. I will say that I feel like when you suppress stuff instead of getting to the root of the problem, it can manifest its self as a different problem because its got to get out some how. That doesn't mean I never use medicine to reduce high fevers or get ride of a massive head ache, I just try not to. I'm a natural gal that's all there is to it, so I try other stuff first and often it fixes the problem. Am I getting weird enough for ya? Really that's stuff for a whole different post if I was so inclined. ~ Any ways I also don't like all the side effects of his medicine, sort term, and all the possible side effects long term. Some of the stuff straight out of the pamphlets is super scary. At one point they put Atty on a medicine, right before this last new one, that ended up making everything worse and that was really frustrating. It was a stupid mistake and they should have known better, even his main doctor said that. It was a really bad set back that should have been avoided. I don't like that it seems as if my child is an experiment. All the meds he is on haven't even been studied in his age group, nor have they been studied in this combination that he is on. I know that the doctors are frustrated too because he is not an "easy case" but they just seems so flippant about everything and that annoys me. I do feel blessed that his main doctor happens to be the only doctor I liked in our whole hospital experience, so that is nice. Although we of course still have different views hers being more main stream and mine being more alternative we still seem to be able to mutually respect each other. Something I haven't felt from any other doctor there. I keep reminding myself that we are hoping to get him on only one med as soon as it gets to a therapeutic dose and then ween him of the others, but in the mean time it makes me sick to my stomach giving him all this medicine and I keep praying that the side effects will be minimal and mild.

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Have I mentioned yet that Atty is such a trooper...absolutely resilient...amazing...and quite possibly the sweetest kid on planet earth? I am so proud of him and his positive can do attitude!

Over and over again!

This is my child right now. I am heart broken. Today alone he has fallen down so many times that he has a fat lip on the top...and the bottom. That huge lump above his eye...he fell and hit the same spot twice. His red cheeks are from falling flat on his face, over and over again. He has bruises and marks all over his body. He continues to have seizure activity. There have been a couple days thrown in where he seems to be improving and then...BAM...some other complication, or the same old thing. He is not having long seizures as of lately, but he is having very sort ones, OVER and OVER again! He will be standing next to me one moment and then flying over backwards the next as if some invisible force yanked him down. Or he will be walking and suddenly fall forward and smack his face into the ground. He seems unable to catch him self, because his body is contracting or flailing as he falls. There is no warning. Some times he can talk fairly well, other times it is an absolute struggle or not at all. He is drooling non-stop and is back in pull ups because he can't control himself. When he starts to cry, it just tears me up inside. He wants to play so bad, but he can't really because he keeps falling all over the place, it's so sad to watch. He doesn't want to sit still though and I can't make him, so he ends up getting hurt over and over again. Somethings got to change, somethings got to give. Today on the phone with his neurologist she started throwing some scary stuff out there that I don't want to acknowledge just yet, stuff about limited options when medicine doesn't work, and how she had to get yet another opinion before talking to me further. She is going to call tomorrow, and I am not going to sleep very well tonight.
Look at him, still trying to smile through it all! Today after he had fallen down and got the shiner for the first time above his eye I sat on the couch with him and started to cry. I was feeling so overwhelmed and frustrated. I really started to get weepy and I looked over at Atty as I cried. He looked up at me and started to laugh. Laugh! He was laughing at me. I said "Why are you laughing, mommy is sad that you are hurt." He got serious and said in his tiny slurred voice "Momma cry?" I said yes and started to cry again and he laughed at me again! So I couldn't help myself and I started to laugh too because his giggle is so contagious. We sat on the couch and laughed together through our tears. His tears from falling down again, mine from watching my child suffer. Our laughter was at each other. I'm still not quite sure why. But that's what I love so much about him, he sees the funny in situations where no one else would.

My time in the hospital...

Lots of moments were sad.

Some were happy. I loved the stuffed animals that I got.

Baby sister was with me. Sometimes she was the only one who could make me laugh.

This was around rock bottom, Mommy was having a hard time keeping it together.

I got an ouchie from where the IV board was on my foot (before they moved it to my hand), mommy was sad to see that and gave me lots of kisses.

My brothers came to see me, but they had to wave from the door because I got a stuffy nose and they put me in isolation. Mommy was really mad. I wasn't sick, they figured that out after my brothers had already left. Daddy got to visit with me though and we had lots of great snuggles.

Mommy went to visit with brothers and they went on a walk together.

They took pictures with all the awesome animal statues at Children's hospital.

Mommy was so sad to have to say goodbye to them that she cried for hours.

My Neenee came to visit me and so did lots of other people. They brought mommy food and love and well wishes for me. A couple people gave mommy money for a yummy coffee drink, they know her so well! It was very nice of them, mommy was drinking the free drip coffee but she made a face at every sip because I guess it was super nasty. The nurses figured out really fast that mommy needs her Cup of Coffee in the morning, before Anything Else. If I could of talked I would have told them that myself!

My sister spent a lot of time in her backpack carrier.

I finally got to go for a wagon ride to see the animal statues. I wasn't talking, but I had a smile on my face so mommy walked me around for a long time and showed me every single statue.

It was a lot of fun! So nice to get out of the room for a little while.

Then they told us that we might be able to go home for my birthday. My sister thought that was super cool!!

My mom thought it was about time. Nine days in the hopital is WAY too long.

We were both pretty excited about it.

Mommy rushed around doing all the last minute stuff and before I knew it I was sitting in the lobby waiting for the van that would take us home!

We were so ready! Mommy cried again, but this time it was tears of Joy!

S. M. I. L. E. S.

WE ARE HOME!

Yahoo...we finally made it home, right before his birthday! He is still not talking a lot but making progress and eating well so they said we could go home and celebrate his birthday in style. We have lots of follow ups scheduled, and I have lots of journaling to do, meds to give and constant supervising, as in hovering, because he can't walk very well yet...still wobbly. No seizures though for days now, so that is awesome. My husband is getting ready to go pick up our other two boys and then we get to settle in for some family time. Being home never felt so good! I am praying that we have no hospital stays in the near future, a good long break would be so very nice. I am hopeful that the new medicine will continue to work for him, and that this time we can get back to our new normal for real...from home...I guess I'm saying I don't want the new normal to involve a lot of extended hospital stays.

I will post some pictures of our "adventure" soon. You should see the smile on Atty's face, and mine for that matter. We are not in the clear all the way yet...maybe not really ever, but it does feel so good...so very, very good...to be home.

Birthday wish

Since at the moment I am not inclined to curse and rant and rave I thought I'd give a little update. I will start by saying though that if you are looking for uplifting or witty you might want to skip over my posts for a while (not that I claimed to be any of those things anyways).

Atty has been making some progress. We are still at the hospital and I started my day crying because it really hit me hard that it's Monday and we are still here! He started being more responsive yesterday, and today he walked (using the word 'walked' loosely) around a bit and has been saying a slurred no and yeah with a few other words sprinkled in here and there. I've seen smiles, and he is definitely getting squirrelly and active. Active and uncoordinated is a bit scary. His birthday is on Wednesday and my birthday wish for him is that we are home to celebrate his birthday, the doctor tonight said we should make that a goal so that was nice to hear. Although I am trying not to get my hopes up too fast just in case. It does me no good. It's beyond wonderful to hear his voice even if it's only a little bit. My moods are all over the place inside but on the outside I am trying to keep a smile on my face and keep on keeping on. My wicked side has appeared a few times, mostly middle of the night or early morning...I think the nurses have all discovered it's best to let me go get my morning cup of coffee and then we can talk. ;)

I have so much swirling around in my head about our time here, but no time to do it justice in print. I think one of the hardest parts of being here really is seeing the stress and sadness on all the parents faces. It makes tears spring to my eyes over and over again. That and hearing the wails of an unhappy child wafting down the hallway. Makes me sick. Especially the little baby cries. I am thankful that Atty is starting to come around, and that hopefully we will find a way to keep his seizures to a minimum and find a new normal...at home...Home. Home. Home.

H. A. T. E. it

We are back at Children's hospital. Been here since Sunday. I am tired and emotionally drained. Nothing seems to be getting better. He has had less seizures today, but he is now unresponsive and hardly able to talk. He is constantly twitching and shaking and can't seem to make his mouth form the words he wants to say. It is so completely heart breaking. It's heart breaking just being here, because of course he is not the only child with a problem of some sort nor is he the worst. Hearing the crying babies night and day is really getting to me. I have my little Strawberry with me because she needs to nurse and my other two boys are at their aunties because daddy has to work. I miss them so much it hurts. I hope to see them tomorrow here at the hospital as it doesn't look like we are leaving any time soon. I hate this. I hate the seizures. I hate the medicine. I hate not having any good answers. I hate our family being spread around. I hate not kissing my other two children to sleep at night. I hate the beeping and the noise. I hate the 'completely out of control don't know how to fix this' feeling. I freaking hate it all. hate. hate. hate. It's a strong word that I generally refrain from saying. hate. hate. hate. It's the only word for me right now. It's hard not to be angry at everyone and everything right now. I know that is not rational and I am trying so hard to be pleasant to the doctors and nurses, but I feel the angry bubbling and I can hardly swallow it and smile. I haven't had the best experience here, and I often feel like even though they say they want to know how I feel or answer any questions I have they don't really. Not really. They would rather I smile and nod...and that's just not me. Never has been, never will be. I know he needs the medicine to stop the seizures and I know that it's trial and error right now for what one will work and how much, trust me I know this too well by now. But I'm not going to say I like it, or feel comfortable with some of the medicine they are giving him because I'm not. I'll do what they feel is best for him, but that doesn't mean I'm going to like it. Medicine that has never been studied in his age group? Yeah, I don't like that....don't like it at all...two meds together that aren't studied in his age group? Yeah, I don't like that either. Now my child is a zombie, I can't get him to talk or smile. I want my Atty back. Please God just let this end. Give me my Atty back. I'll take it, all the wild and craziness, I truly don't mind anymore. I don't want a zombie. I want Atty. And I want to go home.

Wednesday spit in Saturday's face...

This last Wednesday spit in last Saturday's face, pushed it down and kicked it. Wednesday was evil. Wednesday involved not 1 but 4 seizures.

One in the morning that lasted less than three minutes. I stayed calm this time and called his regular doctor and changed his follow up visit to the next day. Then another one after I got back from the dentist, right before my mom was going to leave. I stayed calm again, called his regular doctor and was told to take him to the ER. My husband was at work and had the van and car seats because his truck is not working right now. So I call a most wonderful friend and she came over with her car and two car seats and away we went Atty, the baby and I. Hubby made it to the ER and told me that the brakes were going out on the van, I'm left thinking what else can go wrong today? Never ask yourself that, because apparently there is A Lot of things that can go wrong when asking such a question. The doctor came back in after consulting with Children's hospital and told us that we needed to head there immediately. Possibly for an over night stay. He asked whether we needed transportation in an ambulance or not, but after thinking about it I didn't want to be stranded down there so I chose to drive. We swung by the house to pick up a few things real fast. Atty was starving having only ate a little lunch so I gave him a few bites of banana and then we headed for the freeway faced with a little over an hour drive. Not even a few minutes after we got on the freeway he starts having another seizure. This time I didn't hold it together, I was terrified. It was worse then the other two and I was coming up fast on the last exit that would take us back to the hospital. I knew right then that I was going to be unable to safely drive us to the hospital. I made it to the side of the freeway a tiny bit past the exit. I have no cell phone (I know, I know we live in the ice ages.) so I couldn't call 911, I tried to lean him forward in his car seat and then I started to have irrational fears going on in my head one of them being maybe he had squirreled some banana away in his cheeks (he does do that some times) and now he was choking...I couldn't tell. So I had to back up on the side of the freeway and cut over on the grass to get to the exit, then I drove like a crazy lady with my emergency blinkers on all the way back to the hospital. While we were waiting for the ambulance (over an hour later) to transport us to Children's he had yet another seizure. I was thankful that this one happened in the hospital and the doctor could get a better idea of what kind of seizure it was, what it looked like. So they gave him some sort of relaxant and we were on our way to Children's. I won't go into my experience at Children's hospital right now, I'm still so burnt out, but it was not good. Very frustrating. Anyway we did end up staying over night, Atty, the baby and I, they started him on an anti-seizure medicine right away and did more test the next day. I got no sleep, they didn't even stop talking to me and doing paperwork until about 2 in the morning. Then between Atty and the baby and all the noise and the nurses etc...well there was no sleep to be had. We didn't leave the hospital until 8 pm on Thursday. I was so happy to leave that hospital behind and head home. Back to our new normal by Friday. Watched a daycare kid and got back on schedule. The other two boys are a little testy from all the change so it's very important that I be a steady beacon for them and get things rolling. Atty is having a lot of ticks and twitches and a few times he has arched his back and flailed backwards which is scary. Then yesterday evening he had a mild seizure lasting about a minute and I just calmly dealt with it and then laid him down to rest. I have all my instructions as to when I need to call 911, what I need to do if it last more then 4 minutes, and what to do if he is eating when he has one (my biggest fear right now, along with him falling off of something high or onto something sharp). I am trained in CPR and first aid for the daycare, so I technically know what to do in case, but I do worry about my state of mind if I am faced with such a situation. I pray that I will be level headed and in control. I know I can, but I don't know if I will.

I feel a sense of calm as I am faced with this new reality, with an underlying deep sadness. A sadness for Atty that this is now his reality, his life, on top of all that he was already faced with. A sadness over all for all the complications this adds to our already hectic lives. I am trying desperately to take it one day at a time but I can't help but wonder, will I be able to keep my daycare running through all this? How will we survive off of one income if I can't? What if we are down to one income and then my husband gets laid off again? What if we lose the house? What if, what if, what if? What if this gets worse? What if the medicine doesn't work? What if we have to try some of the nastier ones? What if his NF1 gets painful? What if he gets hurt? What if, what if, what if?

So right now I am reminding myself multiple times a day to let it go, and let God. I am in constant conversations with Him. I am praying, and praying and praying some more. I am forcing a smile on my face. I am forcing myself to keep going, and to remind myself that it could always be worse. I hate saying that but it's true it could always be worse.

Atty is so brave. Inspirational. Talk about some one who keeps on going. He is barely fazed by this all. He just keeps on going. I'm taking lessons from him.

Scarier than...

Yesterday was the scariest moment in time I've every had since becoming a parent.

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Scarier than the unexpected C-section I had with Bubu.

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Scarier than the time I rushed Bubu to the doctor sure he was deathly ill just to find out he had a slight case of croup.

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Scarier than the various times I have had to call poison control for one reason or another.

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Scarier than the time I accidentally locked Bubu in the van with my keys (that one is quite a story).

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Scarier than the time I rushed Atty to the ER after he had a horrible reaction to his 2 month vaccines.

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Scarier than after Spike was born at didn't appear to be breathing at first. Because at least that time there was some part of me that just knew he would even though I was terrified.

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Scarier than all the times Atty has climbed up somewhere way higher then he should be.

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Scarier than all the times Atty has played his disappearing acts.

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Scarier than the times Atty has escaped from the house (we have alarms on our doors now).

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Scarier than the time I thought maybe Atty had a concussion (he didn't).

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Scarier than the time that I was told Atty managed to escape the church nursery during service and was on his way out the doors toward the road following someone like he was their kid.

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Scarier than the times Atty has tried to climb the fence and the times he has succeeded.

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Scarier than the time Atty ran head long in to the ocean trying to catch birds.

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Scarier than all the other various incidences my children (mostly Atty) have put me through, and there are many many more.

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I was think all this while I sat in the ER fighting tears and losing.

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Yesterday as I did the dishes in the kitchen Atty was talking to me on the other side of the baby gate. I was listening with one ear and thinking about other stuff at the same time. All the sudden I hear a big thump and whipped around to look at where the sound came from. Atty was on all fours his head against the cabinet and his whole body was convulsing. I think I screamed out loud or maybe just in my head as I grabbed him up realizing too late that I should have laid him to the side where he was at in case something was broken. I couldn't think straight. His head and body were convulsing, his eyes rolling and he was breathing in short burst. I was shouting his name and started toward the couch trying to see if he was going to snap out of what ever was happening. Then I realized that I needed to call 911 and I rushed to the phone with him in my arms. As I called 911 my mind raced and all the sudden I feared that some how he had broken his neck and I felt sick. I tried to think as the operator asked me questions but I could hardly tell her my address and I could feel myself starting to lose it. Then Atty exhaled and did a couple big jerks and seemed to stop breathing and I lost it. I started screaming his name and crying and begging him to stay with me and I could vaguely hear the lady assuring me that help was on the way and that she was going to stay with me. For a split second which seemed like forever I thought I lost my boy. I felt it. The fear. The hopelessness. The disbelief. My sanity skipping away. Then at the same time I saw my other boys staring at us and Atty started to move and breath again and I took a big breath of air myself and forced the fear down again. Atty was dazed and still doing some slower jerky movements and not talking or making eye contact and the paramedics got there right then. They were amazingly fast and wonderful. So reassuring. They looked him over and asked me questions and it dawned on me right then that Atty's birth mother has a seizure disorder. So I told them that and they said they felt that was what he had and they wanted him to go to the hospital. I was shaking so bad at this time but the rest of me was under control. Just scattered. My husband was working and since his truck broke last week he was using the van and had all the car seats. They took us all to the ER, they were so kind and understanding and helpful and I was/am super grateful for them. I had to pack a bag and call my husband to leave a message before we left and I'm still not sure how I did it as I felt that there was no way I could focus but I did. We loaded up and started to move very carefully to the hospital. Atty snapped as we started to move and then proceeded to throw a tantrum and freak out all the way there because he was disoriented and I think scared. I couldn't hold him and he didn't like being held by someone else. At least they didn't insist that he be secured to the gurney thing like they were going to do at first. That would have really terrified him. They just happened to have a car seat for Strawberry and the other boys sat so still all the way there and listened so well. I was really proud of them. They took it all in stride and didn't freak out once. They are amazing. I prayed all the way there. For strength. For my son. For help. We were at the ER for a long time, Atty seemed fine by the time we got in the room, just a little out of it. I finally got a hold of my husband and he came and took the other two boys out to the lobby. I told the doctor about Atty's birth parents history and he wanted Atty to have a cat scan. Thankfully Atty fell asleep before the scan and slept through the whole thing so that they didn't have to sedate him and we avoided that trauma at least. They also took his blood, he was so brave, but it hurt and they had a hard time getting his vein. It was hard to see him having to go through that on top of everything else but I just kept telling him how proud of him I was and how brave he was while I helped with pinning him to the bed as they worked. When the doctor came back he told me what I feared, have been fearing for some time. It looks like Atty has NF1 (neurofibromatosis), which is something his birth mother has. Tumors grow on your nerve ending and it's painful and people who have it can also get seizures among other things. I knew this was always a possibility, and I saw as the faint spots were showing up on his skin, but I was hoping beyond hope that this wouldn't happen. So now we are going to be scheduling a visit with his regular doctor and possibly going in for an MRI in the near future. There is no way to tell if or when he will have another seizure. The doctor said the seizure medication can cause some retardation, he wasn't really specific, but he said that unless it was absolutely necessary we should try to avoid it. Especially because of what Atty already has as possibility because of his genetics.

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I am still in shock. Mostly because the situation was terrifying since I didn't know that he was having a seizure at the time, and was fearing that it was much worse. Now that I am more aware I know that I won't respond the same way next time. I know what to do now. I am still afraid for my child though. Afraid for his future. I don't want him to be in pain and I am hoping that the seizures won't control his life. I feel on edge wondering when the next time will be. I feel fairly certain there will be a next time unfortunately. I have been through so much with him already in his sort almost three years, I am exhausted thinking about the years to come. On top of all the health concerns is the simple fact that he is a handful and then some. Very active, very impulsive. I can't help but think, what if he has a seizure while climbing up high somewhere, or swimming when he's older, or what if he falls wrong or falls into something sharp. I need to stop and take one day at a time, but I am going in circles right now. He seems fine, I am the one left traumatized.