Wednesday, December 30, 2009

forgiveness and rwanda, letters to drs.

Late night I was feeling very blue, so I took a really hot bath and read my book Chris gave me for Christmas. Its called as we forgive. Its so good. Its the stories but each time she shows the forgiveness and the faith the people come to. Its so speaking to me. I have been so angry inside and I need to let it go. God is really moving in my heart re Rwanda and the middle of Africa. I really feel called there but because of our situation with Jeremiah it will be a while. I feel like the trip I am taking to Uganda this summer will be very pivital, to our lives and to what God has for us. God is shaking things up in my heart and preparing me. My goal is to spend more time with him, in his word, in journaling and letting him heal the brokenness of my heart so that I can be used by him. So last night through this book God changed my poor attitude.

I got out and decided to write the email Dr Wang asked me to for Dr Koh. I wanted to yell at her so to speak and demand to know why they are treating us the way they are. That was not the letter I ended up writing. Instead I begged her for help and poured my heart out. I do not know what to expect. When we first saw her I was terrified to go back to children's in Denver because of what they had done to him. God gave me this weird peace that overwhelmed me. I thought he was crazy and did not understand why he would give me peace about children's. Several times we were hospitalized the holy spirit would overwhelm me with this peace that I cant explain but had no connection with how my heart felt. He told me to trust. Something I do not do very easily. Things have not turned out well and it seems my fears are well seemed but god is above all that we think or know and so I am giving her one last chance. So I place Jeremiah in ods hands once more and ask that he take care of him, not understanding why things are the way they are.

Before the kids were born, even before I knew Chris, God radically saved me literally from death and then totally changed my life forever. He deeply healed my heart the first few months after I gave him my all. I had been told I could never have children. He first gave me a dream where he told me lots of things and then told me that after a time or trial and testing he would give me a daughter. In my dream I held her. I will never forget that, I can still see the image in my mind. That beautiful baby was my Beka joy. Then I was driving home from seeing my parents in Denver and I was praying to my beloved God and I had an open eyed vision of Jeremiah. I saw myself wearing a skirt and this cute little blond boy peeked out and I said to him Jeremiah you do not need to be shy. That was my Jeremiah. Last night I remembered this vision, and my heart broke into pieces because I do not understand why he has lost so much from when he was 2 or why we have had to suffer though all of this, the seizures, the fights for Dr's to treat, the fights with the school to educate, the fight to try and make friends understand and be there and not be condemning. I cried and cried and cried. The anguish of it all overwhelmed me.
I know that God loves me dearly and is with me through it all, holding me and healing me. I do not understand why we are not in Africa or Mexico or on the mission field somewhere. Someday it will all make sense. Someday there will be no more tears or sadness or hurt or betrayal. I look forward to that precious day that I get to see my precious saviors face.

Tuesday, December 29, 2009

Someday I will not be sad/ mad/ crazy

Today is such a hard day for me as well as Jeremiah. Jeremiah is not doing well today. He refused to do any school work this morning so I made him go to bed. Mind you this is at 9:30 am. he passed out cold. His speech is slurred. I woke him up for speech T and he went and she said he did not do god. Could not follow directions. She has noticed that he is no onger doing good. He woke up from his nap and his eye is drooping and he is bursting into tears over everything. He started crying for Lisa our nurse that we had before, crying where is she?.

So I have had a rough day. I am very upset over Dr koh and childrens and cannot fathom why they are being like they are. I feel very panicky inside. which is making me feel very angry.
Its so not fair as josiah would say.

I dont want to be like this stessed out and miserable. I want to be full of the joy of the Lord. I cant stand this. My prayer life is lacking very much right now. except my pleas for help. But there is no help. I am so worn out and needing relief.

We finally have the whole house clean. Only problem it does not stay perfectly clean. If only it would. I guess that is a daily on going battle. I just dont understand how women keep their houses so very perfect and then there is me lacking so very much. The only way is not to let my children move or play, or wait even breathe. Please if anyone could give me advice id love it.

I am trying so hard to stick to a 1200-1400 calorie diet so that I can lose weight and so that my blood sugur will come under control. One reason my moods are so crazy is because of my blood sugar staying so high. I have been actually testing it four times a day. Its slowly starting to come down which will in turn help me lose weight.

I do have hope and I do have things to look forward to. I just dont know how to help Jeremiah.

Have a great day. Wren
Jeremiah was better on christmas just very withdrawn and not talking much at all. The next couple days he got better each day with no more seizures. We cleaned the house top to bottom and got all the laundry done finally.

I have been pondering a whole lot about what to do with the whole doctor thing. Bottom line is that childrens will not treat him until they see a sz for themselves. I have been thinking about all that we have been though, how we flew out to minnesota epilepsy center at the children's in at ST.paul. Jeremiah and I were there for 10 days over christmas 2 years ago. It was so lonely and hard but it felt like such a victory. They read all 3 volumes of his records and they said within the first 24 hours that he definatly had Landau kleffner syndrome, like dr wang thought. The Drs at childrens totally threw that diagnosis out and will not admit that he has that. Childrens never was willing to look at reports from outside their hospital. Not speech, not eegs reports, not even the child development unit in their own hospital.

So what am I suppose to do? I am so scared for jeremiah because in a lot of areas he is declining. Like not sleeping and not eating and always vomiting. He doesnt ever have a conversation with us. He is so frustrated and gets angry when we dont understand him. He does not understand what I am saying and twist whole sentances around in his head and hears something that is not said. He is still having seizures even ones that last way too long.

I made an appt with his pcp ped dr. Its on the 13th. I am going to ask for her help. I am so frustrated and stressed out about it all. I am tired of being stressed out about this. It shouldnt have to be this hard.

So those are my thoughts for today. I am scared and I dont know what to do.

Please pray for us. Thanks so much Wren

Thursday, December 24, 2009

christmas eve--- lots of seizures

Today Jeremiah woke up going in and out of seizures, staring and picking at his lip nad then crying and then going into rages. I gave him extra seraquel for the psychosis and it kept going all morning. I called dr wang and he had me swipe him first. I tried it three times. By this point his eyes were drooping from todds paralysis and he looked horrible. He was curled up in a ball on our cna's lap. Then he started another round of crying so we gave him diastat and it stopped and he slept for 3 hours. Dr wang said anymore and he wants to bring him in for observation. Hes awake now and his speech is very slurred and hes having a hard time talking. But awake and not emotional. I pray that he will be okay for the rest of the night.

We are now on our way to church and afterwards to the Branham christmas party. Hoping that all will be well and we will not see the inside of an ER tonight.

Tuesday, December 22, 2009

Our story

I am a mom with 4 very beautiful children. Jeremiah is our first born. He is 7 1/2 years old now, which is so hard to believe. I so remember being pregnant with him and all the dreams I had in my mind of what he would be like and how much fun we would have. I remember wondering what he would be like when he grew up. I was so excited to meet my little man. He was born on a beautiful august day. He was very laid back baby. Rarely did he ever cry. He just liked to look around and take everything in. He advanced very fast in every way. By 4 1/2 months he was sitting up. 6 months crawling. He took his first steps at starbucks in frisco, co at 11 months. He explored everything and loved to make huge messes. He was never a cuddler but always up an on the go trying to figure out how everything in life worked. I knew he would be an engineer. At age 1 he could already work the vcr. When he was 13 months he was joined by his beautiful sister Rebekah Joy. He didn't know what to think but in his laid back way accepted her and went on with life. Somewhere between 19 months and age 2 his speech started getting worse. I didnt really notice at first, it took our pediatrician pointing it out. I did notice that he would learn a word and then it would disapeer. I thought he was saving it up for later. HE started having other bizarre things. His favorie toys were the little bath duckies. They went everywhere with us. He would line them up or put them in a horseshoe and tehy would takl to each other. He called them duckie. He started having weird crying spells for no reason, sometimes he would pound on his own head. I did not know what to do. He also had long periods of time where he would stare off and not hear anything I would say, just drooling. I did not know any better at that time but he was having seizures.

Our ped dr sent us to speech Therapy. We did it for a full year and he actually went backwards. The speech T told us we needed OT and a consult with a neurologist. That whole year he progressivly got worse. More into his own world, all words gone and he was just babbling. No one could understand him. He had several run ins with kids at church where he would bite. i was so horrified. I seriously thought he had autism. My husband told me I was crazy and so I cancelled the appt with the nuero. I later made it again and we saw him near the end of Jeremiahs third year. He said he wanted to rule out Landau Kleffner syndrome. And so the rollercoaster of our lives started and we have yet to get off.

We did an overnight eeg and an MRi. The eeg had almost constant discharges coming from his temporal lobe. Dr wang started him on medicine called Trileptol. It was a miracle. Within 4 days Jeremiah started talking, words we hadnt heard. He stopped drooling and he started interacting with us. It was very shortlived though and we had to keep increasing the medicine. He was 4 at this point. He was having the crying spells and something clicked in me from what I had read about complex partial seizures, that they could just be crying. I asked the dr and he said yes. Then the end of oct that year he had his tonsels out. He was fine until 6pm. We were staying the night at childrens hospital. He started withdrawing really bad. At 11:30 he woke up crying, it was a seizure. I pulled him on me and he started convulsing in a grand mal seizure right on top of me. It lasted well over 5 minutes. I was so very scared. I will never forget that night. He wouldnt eat or drink and we ended up being in the hospital 4 days. He had another huge cluster of the crying seizure the night before we left. That one lasted half an hour.

So we came home and things just did not go well. Two weeks later he had a cluster of the crying seizure that turned him completly blue. I called 911. He was admitted and we had another 48 hour eeg. They captured his first sz on eeg. It was a crying sz that lasted 5 minutes. I did know what I was talking about and relief poured into because I wasnt crazy. They changed his medicine and sent us home.

Then on Dec 2 he had a drop seizure outside in the snow and busted open his head. off to the er again and another admit. Dr wang told me that he had consulted with drs from minnesota and that he really felt Jeremiah had LKS (landau kleffner syndrome). Unfortunatly he had already sent us up to childrens for consult. The dr there totally disagreed and told me that he only had ESES. Later in June she denied ever even saying that. So we started on a horrible yes he has it no he doesnt. I had to talk with both of them when things got bad. She had us do an 48 hour eeg right before xmas which showed the eeg much improved due to the daily diazapam and the steriods that Jeremiah was on. Then another 3 day video eeg in january. No seizures were seen at that time.

Febrauary was okay but then he started going downhill again. beginning of march we were admitted because he was toxic on the dilantin and it was affecting his liver. We were there for 7 days. They captured a seizure on the eeg. But then he was not connected and had a horrible crying seizure with vomiting that started at 5:30 am. It was witnessed. We started IVIG to see if it would help him. We continued that once a month for the next 2 1/2years. It improved his speech but never helped his seizures. The dr in denver wanted more proof of the seizures and so in april he spent three weekend hooked up to veeg. only one time did they see anything. We also were giving him huge doses of iv steriods which cleared up his eeg at the same time.

By June I did not want to go back to chidrens. I was tired of all the eegs and always having to prove it. Dr wang wanted us to try just one more dr, which ended up being a nightmare. He told me that I just needed to accept the fact that Jeremiah was just a developmentally challanged kid and that he had autism not seizures. He took him off all his meds cold turkey. Jeremiah spun out of control. He lost all speech 100% even sounds, started pooping in his pants, hiding under the furniture and was terrified. It was horrible, another thing I will never forget. I refuses to go back to childrens and dr wang saw the huge regression in Jeremiah and he tried a different medicine.

He sent us to minnesota where they read all 3 volumes of Jeremiahs records and they said yes he definatly had LKS. They had worked with a lot of kids with lks. It was such a relief. Then in april the next year we caught a whole bunch of seizures even another crying seizure. that was a relief too.

I wish it could have stayed like that. He did really good for quiet a while until we went back to childrens because there were some new drs there. It has been a nightmare once again and I am still living it to this day.

In oct last year through november he had 6-8 status seizures that made him regress and hurt his psychologically. He has never been the same kids since then. Hes more withdrawn and plays by himself. He lives day to day moment to moment. There is so much speech he doesnt understand. non verbal stuff he really understands though. Hes good visually, just not verbally. He doest sleep, He stopped eating and started vomiting all the time. He started seeing a Gi Dr and 2 months ago we had a G tube put in. It has been great. Hes going downhill again, more seizures.

2 weeks ago they could not wake him up at school. He was completly unresponsive even to light stimuli and pain. another trip 911. lots of seizures that day. They just wanted to send him home. Childrens totally blew us off. I still cannot believe it. They are trying to say he does not ahve seizures and that its behavioral and that we should admit him inpatient psych hospital. I cannot and will not do that. I am so tired of this battle. They are slowly killing my son. He has brain damage and I hope it gets better, things are not looking so good right now.

Its christmas and alls I want to do is sleep. I cant stand this anymore. I feel like I am slowley going insane. I just want someone to help Jeremiah and stop being so freaking skeptical because in way is he normal. We have been through too much as a family. When is it going to end? I do not know. My heart is grieved and broken and not much fight left. So that is our story. I hope you can follow our blog and pray for us. You can subscribe to this by email. God bless you!!!