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 is 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.
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 then 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 is 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.
Yesterday was the scariest moment in time I've every had since becoming a parent.
Scarier than the unexpected C-section I had with Bubu.
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.
Scarier than the various times I have had to call poison control for one reason or another.
Scarier than the time I accidentally locked Bubu in the van with my keys (that one is quite a story).
Scarier than the time I rushed Atty to the ER after he had a horrible reaction to his 2 month vaccines.
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.
Scarier than all the times Atty has climbed up somewhere way higher then he should be.
Scarier than all the times Atty has played his disappearing acts.
Scarier than the times Atty has escaped from the house (we have alarms on our doors now).
Scarier than the time I thought maybe Atty had a concussion (he didn't).
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.
Scarier than the times Atty has tried to climb the fence and the times he has succeeded.
Scarier than the time Atty ran head long in to the ocean trying to catch birds.
Scarier than all the other various incidence my children (mostly Atty) have put me through, and there are many many more.
I was think all this while I sat in the ER fighting tears and losing.
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.
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.
I thought I should do something big or share something amazing, make it memorable like I've seen other bloggers do for milestones like this.
Something really big.
So here goes................Today for the first time in Years (unfortunately I'm not kidding) I have washed, dried and put away Every Single Piece Of Laundry in this house! This is BIG people, very big! There is no pile of dirty laundry in my laundry room, or in laundry baskets, no clothes in the washer or dyer, no mountain of clean clothes on the couch, no clean piles of clothes sitting in the kids rooms waiting to be put away in a free moment......................it is all put in it's place!! (and) It Feels Wonderful! :) My laundry situation was plaguing my dreams! I told my husband the only thing I wanted for Christmas was no dirty laundry in the house (He got me a necklace instead, guess who doesn't like to do laundry?). I think I might stay up late just to stare at my clothes free couch, I almost forgot what it looked like. ;) It's not that I had dirty clothes laying all over the place, it's just that there was always laundry in some form somewhere waiting for me to either wash, dry or fold and put away. (but) Tonight, for at least this one night, it is all done and in it's rightful place and I have to say I am loving the feeling.
Today I made it to the light at the end of the tunnel and that my friends is worth celebrating in my little world. Because the laundry at my house...well lets just say it's like the song that goes;
"this is the song that never ends,
yes it goes on and on my friend,
somebody started singing it,
not know what it was
and they'll continue singing it for ever just because"
(repeat over and over again until all sanity is gone.)
(and) Change the word song for laundry. (and) Tweak a few other words in there. Then you get the picture. Maybe.
So there ya go, no give away or life changing revelations, just one happy lady that feels free of the constant laundry for one evening. So free that I am wandering from room to room with a smile on my face. It feels so good. Ahhhhh! Now that's worth the 200th post.
HAPPY NEW YEAR!Our Auntie B got us these awesome matching pj's for Christmas and so we wore them on New years eve...aren't we so cute!
Of course Spike was pulling an attitude because it wasn't his turn to hold sister any more, so he refused to smile, little stinker!
Watching a movie together in our jammie's. We had a tattoo party earlier that day and so the boys were covered in those washable tattoos. They had a blast! Notice J in this picture? He was with us all last week, it was so nice.
Spike was the first one to pass out. He's been refusing to nap (tears of pain streaming down my face) it's so frustrating. So he made it until about 11 and then crashed in a pile of tired baby on the floor. This is the one night of the year were they have no bed time, it's always interesting to see who makes it and who doesn't. Last year it was only Atty. Bubu had been looking forward to this bed time free night all week!
Kissing the baby.
I love this picture of my sweetie...I was laughing because he always closes his eyes in pictures and I tried over and over to get one were his eyes were open but it just wasn't happening. I rarely get a picture of his adorable smile, so this is a treasure...even if his eyes are closed.
Another treasure, I rarely (if ever) get a picture of this one smiling either. Must be genetic. I absolutely adore this picture of me and my Jbird.
Cheers! Happy New Year, ringing it in with some sparkling cider. Spike was the only one not awake a midnight (well and the baby, she was off and on all night). We toasted to another year together and then watched fire works out our window. Somebody put on quite a show.
Hubby was the next one out...he fell asleep during the second movie of the night. He's leaning on me, it was kinda funny...Atty made it longer then he did.
But not by much, he feel asleep in my arms.
This boy was determined to make the most of his bed time free night this year. He stayed up very, very late. Later then me, he partied with Uncle J this year. He looked so tired but he was absolutely not going to go to sleep even if his eyes were rolling. So sticking to my word I gave him a kiss and rolled into bed myself...because I knew that regardless of what time my littles went to sleep...they would still be up at the crack of dawn (or before) and I was right. ((Sigh))
I'm not sad to see 2009 go. It was a mixed year for me. While we were blessed by the completion of Atty's adoption and the birth of my baby girl, we also lost my husband's mom to cancer, which was very hard on him emotionally and he was laid off more then he worked all year. This was one of the most financially trying years we have ever had. The debt we are in keeps us both up at night. It's like we live in one of those card houses and if we don't place each card in the perfect spot the whole thing will come crashing down.
So my hope for the new year is that we will continue to be a strong family tied together in love. That my husband will continue to be employed and that we will find a way to work ourselves out of this debt...and stay out. I hope and pray that my husband will feel less pressure and have less struggles. I thank God that my husband and I stayed strong together though the stress of last year and I pray for the same in the new year. I am dedicated to the same thing this year as I stated in this post for last year. I did okay (definitely baby steps) and I managed to read about half of the parenting books I listed, so this year I want to read the other half plus maybe some new ones. My goal is to make some giant steps in the right direction, enough baby steps already. I already read a new one called Being a Great Mom and Raising Great Kids by Sharon Jaynes, great book. Any other suggestions?
All in all I am excited for this new year. My life is full, but I can breath. Were as when Atty and Ira were littler I was barely keeping my head above water I was so tired and stressed out. Now that the boys are a bit older it feels easier in a lot of ways. I am enjoying this baby stage with Strawberry, because it seems like a breeze in comparison. I have such empathy for people with multiples now. Although the boys aren't actually twins they are only four months apart and it was like having twins only they Never ended up with the same schedule! The first two years left me completely drained and feeling very overwhelmed. Ryder and I were also not working well together in all the stress so that made me feel completely alone and frustrated. We came together a lot better in this last year and that is part of the reason I am looking forward to all we can accomplish in 2010!
Most of all I am going to stop with the excuses and take some time for myself...because I need it to be a better mom. I am finally realizing that they truly come hand in hand.
...and somewhere in there I want to spend some time all alone with my husband, because none of this works well if we can't remember why we are doing this in the first place and feel that love that sometimes gets lost in all the noise.
I have a seperate blog now for me to journal about Atty's health issues. If you want to check it out Click Here. I am going to be keeping this as our family blog and updating issues with Atty on the other blog from now on.
Mommy Riah, also known as Miriah :)
~ Children are the living messages we send to a time we will not see. ~
We are all on this journey together...
My husband, Ryder
The love of my life, caring, passionate, intelligent, introverted, Mr. fix it, hard worker.
~The family is one of natures masterpieces~
and ~Childhood is the most beautiful of all life's seasons.~
My first born son, wise, protective, sassy, comical, perfectionist, snuggle bug.
My heart child, wild, curious, adventurous, loving, sensitive, fiery spirit
My littlest boy, mischievous, silly, independent, smart, tough guy, sweetheart.
My beautiul baby girl, charming, happy, strong, funny, sassy, chatterbox.
~Our brothers and sisters are there with us from the dawn of our personal stories to the inevitable dusk.~
and then there is J-bird...always on my mind.
Click on the picture to learn more about my first baby.
Busy homeschooling mom to four amazing kiddos. I met my husband when I was fifteen. It's been a long road with lots of ups and downs and I am so glad we have stayed on this path together to enjoy this adventure. I am so lucky to be married to my best friend and the love of my life. I never imagined my life could be so full, and wonderful, I am truly blessed! Never a dull moment...