Tuesday, January 12, 2010

struggling with anger

I am really struggling with anger today and prob past few days. Its eating me up. I am so angry at the drs at the school, at Jeremiah, even at myself. Its effecting everything and seeping into everything. I am soooo sooo angry at the school bec they do the least minumum to help jeremiah and act like its the most. They put guilt trips on me if I say anything, just to shut me up. I am so fed up of eveything being a fight and a struggle with them. I am calling an iep meeting. We shall see if anything comes of it.

Today Jeremiah was very off. He was all over the place and he bit josiah for no reason. On the way out the door to school he freaked oyut about his toys because he was paranoid someone was going to play with them. I couldnt get him out the door. I came back in to pull him out and fell flat on my face. It hurt and I was an idiot and told Jeremiah I hated him. What the heck is wrong with me. It just came out and I meant it at that moment. Its not his fault for being the way he is but I am really struggling with deep resentment. It sucks. i dont want to feel this way.

I also am struggling with totally feeling like we failed in so many ways. If we had enough faith he would be healed. maybe we are demonized and that is why he is like he is because Ive lived such a screwed up life. thought after thought torments me that I caused this. or maybe there is really nothing wrong with him and I am crazy and I am the one causing all this. No one believes me when I say hes not ok, maybe I am the one who is delusional.

So I am struggling hard and sometimes just want to disappear. I feel so helpless.

Today we are off to children s to get his head put on for 3 days. I don't even really care if he has a sz. I am so tired of worrying about it. if it happens it happens.

So that is how I am right now. Pretty bleak and dark huh?

Monday, January 11, 2010

things are hard!!

I wish that I didn't have to write that buts its true. i feel someone catapulted my life into a black hole and my reality has been turned upside down.

Things just seem to keep getting harder and harder.

Last week the school started getting yucky again. First they refused to do a communication log. They said that writing in his planner if there is a need would be enough. They have never written in the planner. So I called and talked with the sped teacher. First she said if things were bad they would for sure let me know. then I went on to tell her how bad they have been at home and she responded that he has definitely regressed at school and its all because we got a nurse for him at school. They feel like he just thinks he doesn't have to work. Let me tell you I am sick to death of that attitude from them. I told her I felt like he was in a regression and it started when he had the hour and half unconscious event at school. So I go to pick Jeremiah up Friday afternoon and his teacher is there waiting to talk with me. She also said hes regressing and that she noticed it started the same time as the nurse did. ( big eye roll). HE had a horrible day on Friday. I went ahead and took him to er for blood work. During all this I was emailing Dr koh back and forth and her answer was to take him and have him admitted to the kids psych unit. That one did not go over well with me and I sent a few more emails back saying no way is this psychiatric, kids do not lose speech bec they are crazy. I am sick of this. Bottom line that came out of those emails is that we have tried everything and there is nothing left to try and they think its just residual. I just have to live with it. It does not concern them bec they have written us off. It drives me crazy inside. All weekend long my insides have been shaking because i have been so very upset.

So here the low down, Jeremiah is having a huge struggle understanding things that Chris and I are saying to him about everyday life. He is not dressing, not grooming himself, not able to do schoolwork for us, no eating (lots 3 pounds the last few weeks) vomiting when he does eat, not sleeping, losing skills he learned at school, totally in his own world, angry, aggressive, absolutely no attention span, not even that of a 2 year old. He so totally falling apart. I took him to ped dr today and she took me seriously. She is running a whole bunch of blood work.

What am I suppose to do. And this is the time the school decided to throw the IEP out the window and get nasty. I cant stand it. I dont need this. I want to be happy and stress free. i want to enjoy my kids not always be freaking out on them because I am stressed to the max. I want to enjoy a beautiful day like today and not be knots all over inside and out.

I know that God is here and that he hears my cry. I know that he is fighting for Jeremiah too. I am so very ready for this to be over. I feel really sick inside about the whole thing and I am scared to death what the future holds. I so hope we get to ucla before its too late and the damage is permanent.

Please please keep praying for us.
love wren

Monday, January 4, 2010

possible breakthrough???

Wow!! Today has been a very stressful and emotional but possible answer kinda day.

Jeremiah has been very volatile and scared a whole lot of today but once again his speech is clear and he is somewhat understanding. We had a cute thing happen st Starbucks. I took Jeremiah with me to run some errands and afterward we went to Starbucks. Chris wanted a white peppermint mocha. It was the first drink handed to me. I decided to try it. It was nasty. (I hate minty drinks or ice cream). I expressed my disgust and it freaked Jeremiah out. He instantly said" mommy this is a bad Starbucks. We need to leave right now." I told him its ok I just hate mint but he kept getting very upset insisting we need to leave. Then he said Mommy they put worms in daddy's drink. lol he was so upset and concerned I couldn't convince him otherwise..Thankfully he drank his own hot chocolate.

So I am not sure what led me to read about mitochondrial disease. But I did. What I found shocked me very much. Jeremiah fits into it very much so. It freaked me out. It would be an underlining thing that would explain so much that no one has been able to put together. The developmental delays, speech regression, epilepsy, Gi problems, poor muscle tone, fine motor issues, lack of ability to sleep and eat. We need to be tested. there are only three centers in the us that specialize in this. One of those is UCLA. So I have been emailing Dr koh back and forth all day and she agrees that he needs to be tested and needs to see a metabolic specialist. WoW!!! She is trying to get us inpatient but it might have to happen out patient. I am terrified, my stomach is in knots. What if the trip leads to more dead ends, more unanswered diagnosis. Or what if they find something like mitochondrial disease, totally untreatable, only can use good nutrition and exercise and sleep to slow it down. I am terrified and I need to pray. I really think he may have this. Several years ago Dr Wang started doing metabolic testing and he had something called pyruvite(or something like that) test high. I didn't know it but that is very much so a red flag for this. We never followed through on it because I think that is when we went to Minnesota.

I seriously need my friends to pray like never before. We need answers and for the drs to listen. Something is very wrong with Jeremiah and we need help. I need Jesus to heal him first and foremost. Please please pray for Jeremiah.

Tonight we are off to the Y to go swimming. So looking forward to that.

Sunday, January 3, 2010

Today Jeremiah woke up with very clear speech. It was awesome. He came in my room and woke me up telling on Josiah for something. He never ever does that, normally he just screams and attacks for himself. It was great. Unfortunately it did not last and he then had a very aggressive day. He kept getting angry at Josiah and going off on him. on the way to church he started punching him in the car. I had to pull over and separate them. The horrible thing is that Josiah was not doing anything beside just breathing, but even sometimes that is too much for Jeremiah to deal with. It is sooooo very frustrating. So then I start seriously struggling with strong feelings of dislike and I had to deal with that. Tonight at church I gave Jeremiah back into Jesus hands. Sometimes I forget to keep him there. Its so hard. His anger is so hard for me to deal with because when I correct it he just does not understand and he will turn on me and start lashing out at me. Tonight he seemed like he was definitely building up for a seizure. I sure hope that's not the case. he will start being more hyper and saying certain things like i am scared. Tonight he was doing that. I think he was having auras of fear. It so sucks!!! Esp when no one listens and write it off as behavior. I Hate that word!!! On a good note the kids loved church and came home telling me all about what they learned about the Holy spirit. That made my night.

Saturday, January 2, 2010

Today was a good day. Jeremiah was very much there unlike last night. We had two little guest today ari and zion. The kids played so well together all day. Even joshe and zion. I was very impressed. No one took a very good nap but that is kinda to be expected.

Last night Jeremiah was scarily not there. He was playing and I told him to go get his jammies on. He kept going on and talking and playing make believe like I never said anything. I went and got in his face and tried to make eye contact and he was not there. His eyes were blank. Kinda weird. Beka was next to me and she said:Mommy Jeremiahs playing with me but I am not playing with him. The lights are on but nobodys home." Sorry but it cracked me up that she said that. She was so right. I got his jammies on for him and the kids went to bed. Thank God he woke up much better

Dr Koh wrote me back. We are going to set up a at home eeg that will last 72 hours. I am so over eegs but we shall see. Maybe it will be good, The other thing is that she is going to send us to UCLA. I feel very good about it and am very hopeful.

God told me the word for the New Year is HOPE. that is something I felt like I lost and he is renewing my hope. God is do very good to us.

Please pray that Medicaid will pre approve us going to ucla and that we will get a good dr who will get to the bottom of things or at least be able to help Jeremiah in the mean time. Also please keep praying for God to completly heal Jeremiah. That payer cant hurt either. Thanks for reading.

Friday, January 1, 2010

grumpy day's

Happy New year everyone!!!

Jeremiah never slept last night. He got up at 10pm and stayed awake all night. I guess he wanted to ring in the new year. Today he is a grumpy goose. I am the evil mama that is now keeping him awake so that he will sleep tonight. I figured Id take the kids to the mall to play. They would really enjoy that and I can read the bible on my new blackberry bible download. yeah!!!!

Two nights ago I was giving Jeremiah his medicine and he had a seizure. He was staring off and picking his lip. I swiped his magnet on his Vagal nerve stimulator and it stopped it.

Yesterday we spent the day cleaning the house. Today I want to have fun, so we shall see what we can do.

I hope you have a great day too!!