My daughter my hero...

I first talked to Hailee around 8 this morning and she told me that she got a good night sleep and felt a little better.  They stopped her IV at 8 this morning with the hopes of coming home.   As the day progressed that was not the case she got weaker, and weaker and shakier and shakier.  She again had trouble standing without help and felt like she was going to fall down as she stood up.  We all talked and decided it would be a good idea to stay another night.  She was not in a good place emotionally, understandably.  So I did what any mom would do, I went and got her her favorite food and dessert and brought her brothers and best friend to visit her.  That really helped bring up her spirits.  She is still very weak but a lot happier.  What really made my heart soar was among all of this health crisis, she texted me very excited that Pastor Saeed was freed today.  She said " mom God is so good"  Praise be to God!!!  I totally agree.  Praise be to God.  Praise him in the good times and bad.  She really is my hero.

What in the world....

Alright I know it has been a while but I really need to write about what has been going on.  This is a brand new year and I sat there on New Year's eve and said and I quote " this will be an amazing year, the best one yet".  I truly do believe this as when I walk with God, it is an amazing year.  When I follow him life is amazing.  However,  I am frustrated, yes frustrated.  Hailee is once again in the hospital this time for shakiness and weakness because of her Mitochondrial disease.  She is 14 and just went to school at our home school co-op and hung out with her friends there on Wed, and then she started feeling shaky and weak Wed night.  By yesterday she was really bad, her face was swollen and he eye was droopy.  She could not even walk unassisted.  She has been in the hospital since yesterday and had an IV since about 3 yesterday afternoon.  She is not much better and now they want to slow down her IV.  I don't understand why she isn't getting better.  Should I be doing something different?  Should she be on more supplements?  I just needed to rant. I feel better now.  Keep praying prayer warriors and for those of you interested she has her own blog you can follow.

It's been a while...a really long while

I can't believe it's been over two years since I last wrote in this blog.  A ton has happened some good some bad.  Let me catch you up in case you don't follow me on a regular basis.  Laura moved to Michigan 2 years ago and is starting her third year teaching.  She absolutely loves it.  She teaches at a small Christian school, math and science.   She loves her job but hates the winters.  We hope and pray that next year she can find a job here and move back home.  Not to our house but to California.  Hailee has had a really rough time the past couple of years.  She has been in and out of the hospital  a few times and this past April was diagnosed with hemeplegic migraines cause by her Mitochondrial DNA dysfunction.  This causes her to have stroke like symptoms and if not treated the side effects can be permanent.  Every day is a struggle for her.  She has her ups and downs good days and bad days and really bad days.  We of course are always in prayer that God heals her.  Joshua's beloved school closed this past June ( I will not discuss the craziness that lead up to this on this blog but if you contact me privately I will let you know why).  We had to find him a new school and I think we found the perfect match for him.   Justin turned 8  a few weeks ago and is doing really well.  He loves to be home-schooled and can't wait to start our co-op in a few weeks.  Mike started a new job, after working for the same place for 15 years so this year has had a ton of new challenges.  I am so very grateful that God allows me to be part of this amazing family.  I love my life, the good the bad and the ugly.  God is so good!!

My heart is full...

I know I usually post problems, doctor visits or hard days.  Today though was a good day.  It started out with the boys letting me sleep in, which is rare.  Followed by cleaning their room, doing dishes, nothing real special just and ordinary kind of day.  My oldest daughter came home to move her things back for a week before she moves to Michigan.  That is hard to grasp, my oldest moving 2000 miles away.  To far away for me to visit or for her to come home on the weekends.  It is a strange place to be in my life.  Having one grown child and three little ones.  Well I call them little but they are 12,8 and 5.  After she came home she offered to let me and Mike go on a lunch date.  Wow a lunch date that like never happens.  We quickly left and after lunch we did some shopping then came home.  It was just a great ordinary day.  A day that nothing extra special happened but it just really makes my heart full that all my babies are under one roof.  The thought of this ending  makes me sad.  I am so very happy that her life is just starting and that God has an amazing adventures planned for her.  However, as a mama I am not quiet ready to let go of my first little bird.  My nest isn't too full.  However she is more than ready to fly the coop.  At least for tonight, for tonight they are all under one roof and that makes my hear full.

Sometimes I just suck as a parent...

Making bad decisions is par for the course in parenting.  However, when you know something is bad for your child, say staying up to late or eating to much candy you just don't do it.  If you do you will reap what you sew.  I thought it would be a great idea to take Justin and Hailee to see the free movie down at our local movie theater.  They were playing Dolphin Tales today.  With Josh's last week of school approaching it will probably be our only opportunity to see a movie before he gets out of school.  As always I was running a little short on time so I thought lets stop by circle K and get some snacks like we usually do.  Without thinking I let Justin grab his usual, Frito's corn chips and apple juice.  With Hailee's snacks and my drink we were out the door and on our way to the movies.  It did dawn on me that getting those snacks probably wasn't wise, especially with his recent labs and discovering that they are both very high in Salicylates.  I ignored my gut feeling and we proceeded to the movies, snacks in hand.  While Justin started out listening and sitting still in his seat, as time went on I found myself saying" Justin sit still, Justin be quiet, Justin stop touching your face."  I could not believe what a clear difference it made in my child.  How very awful his behavior was.  By the time we left he was in full melt down mode.  Screaming " your hurting me"  Stop it mommy!! All the way to the car.  I  could not get angry at him,  I was however furious with myself.  I knew better, and did it anyways.  I am vowing right here and now not to ever allow my child to consume that poison ever again.  That is what it is, it is poison for him!!!

If at first you don't suceed....

Alright, so I first started this blog about Josh and all his issues.  However, now with Justin having issues and Hailee having a really hard first part of this year.  I have decided to included everyone in all future blogs.  Here are some updates.  We went to the Amen clinic in Feb of this year for Josh.  We found out that Josh has temporal lobe damage and part of his left temporal lobe is caved in.  Not good news.  Also he has what they refer to as the ring of fire.  That means his brain is firing all the time 24 hours a day.  He can never quite is brain.  After many trials and errors, I do believe our new round of meds and supplements are working.  It isn't perfect but I think it is getting better.  Now onto Hailee.  The first part of this year her Mitochondrial disease came back with a vengeance.  She was hospitalized several times due to her cyclic vomiting syndrome.  She also had to be in a wheelchair due to extreme fatigue. She is better now and with an addition of her new med, she has been episode free since March.  Now onto Justin.  We have known for a long time now that he has extreme behaviors.  He was diagnosed with ADHD about 6 months ago, which was no surprise.   However, things went from bad to worse with him.  To the point that we had no options other than to see Dr. Jerry for him as well.  We have an appointment to go back at the end of June.  We got some of his test results back and he has high levels of Yeast and Salicylates in his stool.  I looked up a low Salicylate diet and it turns out everything we were feeding him was extremely high in Salicylates.  Oh man I feel horrible.   You think you are feeding your child healthy, just to find out that no you are in fact poisoning your child.  That for your child these foods are toxic.  Even though I have gone out of my way to buy only organic foods.  It turns out that is not the problem.  The problem is in how the foods affect him.  We haven't even got the allergy tests back yet.  I am not sure what he is going to eat.  He is also an extremely picky eater.  He craves the foods he can't have.  I know God has a plan in all of this.  I will update everyone when I get more results.  Until then crazy is my normal....

Yet another specialist...

Alright so we have been patients of Dr. Jerry's a while now and he has made some improvements with Josh.  However, it has not been that big of improvement.  As per Doctor Jerry's advice we are now going to go to the Amen clinic in New port Beach.  They will do Spec scans and determine what would work best for Josh on a medical scale as well as supplements and nutrition.  I am pretty optimistic about going but cautiously.  He has been getting a little worse lately and I am not sure how much more Dr. Jerry can do for him.  His violent outbursts and erratic behavior has been a little out of control as of late.  Last week he kicked a hole in my wall.  This week it has just been lots of screaming.  I think last week it was getting back on track after the holidays and back to school.  It also could be the wind was blowing or it was Wednesday.   Some days it is hard not to lose patience and hope.  The only thing I get really angry with is when you tell people what you are going through and they say, " you have jewels stored in heaven or well did you know he was like this when you adopted him".  I know they say those things for lack of something else to say, what do you say to a mom like me that has a child like Josh?   I just wish they would stop and think before spewing out such things.  No one ever said to a mom that her biological child was storing her up jewels in heaven.  Do they ever ask her if she knew he was like this before she decided to get pregnant with him. I think not!!  Josh is not a broken piece of furniture or a puppy.  He is a broken little boy with brain damage.  I did not break him but he was placed in my loving arms to try and find a direction for his life.  He has purpose and Merritt.  This behavior does not define him.  It is not his fault nor mine.  Please when you see people out in public that have a special child do not judge them for they are doing the best they can with what God has given them.  Sometimes love just is not enough.  Now that I am done with my rant, it is off to another specialist.  I will update you as soon as I can.  Sometimes life gets away from me and I don't get to update this as much as I would like to.

A new bit of Hope???

We went to Dr. Jerry Kartizinel in Irvine last Monday.  He is a D.A.N. doctor.  While sitting there talking to him I just felt like, finally, a doctor who will listen to me.  He wants to find out why Josh acts like he does, instead of putting a band aid on the problem.  He is doing 26 different blood test, urine tests, poop test, and spit tests.  We are also going to be changing the way he eats and cutting down on sugar.  This will be a very slow process.  I am excited, scared and a little Leary as I don't know for sure if it will work.  I pray that God watches over all of us at this time and guides us through this process.

Here we go again...

Well so much has gone on since the last time I posted. Josh has been on yet another seizure med. This time they put him on Triliptal because the Lamictal was making his tummy hurt and making him vomit just about every day. Then he has been having severe anxiety to the point that he makes himself throw up about 2 to 3 times a week. We have been to a GI specialist at Choc, which I have to say I was not impressed with at all. He basically told me that Josh was obese and constipated. Josh is over weight but it is only because of taking Risperdol and as far as constipation goes, he has no problem in that area either. After getting an upper GI and blood work we have decided not to go back to that doctor and to pursue other areas of treatment. His upper GI came out just fine and so did his blood work. He was supposed to get an MRI of his brain but when he arrived at the hospital he had a major panic attack and threw up all over. The MRI department refused to do it and said we would have to do it under general anesthesia. Well I do not want that because it is only a follow up MRI and not an emergency. That is basically where we are. One more thing Josh can read now and got another 100% on his spelling test. I really think that this new school is the answer we all have been praying for. Thank you God!!!

Progress.. Maybe???

Well we have been at the new school since the beginning of the month. He started taking the bus a week ago or so and loves it. He is making progress, he can identify almost all his letters and most of his numbers. He actually eats at school everyday. Which is a huge difference from his old school. At his old school, I would send lunch with him everyday, and everyday his lunch box would come back full. Everyday at his old school he would have bad behavior (I wonder why, maybe because he was starving). He really likes his new school even though he hates getting up in the morning. Hopefully this is a new leaf we are turning over. Oh also I almost forgot we are changing meds again. His seizure med we think was really hurting his tummy and making him throw up 2 or 3 times a week so we have started a new one and we are weaning off the old one. So far the transition has been alright, except for a 3 hour tantrum yesterday we are doing good. I will keep you updated.

It's been a while...

Well I feel like I have neglected this blog long enough. I thought that life would get a little easier as he got older, well I was wrong on so many levels. First of all let me catch you up to what has gone on since I last posted. He started first grade in an special day class first through third grade class. His teacher was horrible. She did not understand his needs at all and instead of making progress we found out in October that he has not met one single goal in almost 4 years in the school district. Now being a home schooler of my other children I would not normally be that concerned if he was at home. However, if you have my child in your class for 6 hours a day 5 days a week, what exactly are you doing other than babysitting him? We had already hired a lawyer last May and after a very long process over the summer of many, many tests it was determined that Josh would do much better in a private school. Well last week he started and I love it. His anxiety though is pretty much out of control at this point. Everyday I must listen to him go on for hours upon hours that his tummy hurts and he wants to throw up. I have taken him to countless doctors that all say the same thing, his tummy is fine it is just anxiety. We are going to start working on a healthier diet to address that end of it but as with any special needs kiddo, diet changes are hard. For now one change at a time, like going to a new school is about all he can take. He will also be taking the bus starting in a few weeks. Did I mention that I am having anxiety about that? I have never, ever had a kid take a bus before. Time will tell if it is a good option or not. Well that is about it. I will update this much more often I promise. Keep him and us in your prayers as our journey along this life path continues.

Exhaustion is an everyday occurance for me!!

Well we had another EEG done in the hospital. He was in there from July 21-24Th. They found out that he is having focal seizures all over his brain. The "wonderful" doctors at Loma Linda put him on yet another medication called Topamax for his seizures. Well let me tell you that medication is awful. It made him a zombie. He did nothing but drool and cry. He lost speech and language abilities and the speech he has left is very mumbled and garbled. We have decided to slowly wean him off of this med. It isn't controlling his seizures and it is making him a zombie. We are also looking into the possibility of trying the GAPS diet. which may help him some. I feel as though no one is listening to me not one person in the medical community that something is so desperately wrong with my son. I know he has all of these labels but I feel like I am losing in bit by bit everyday. He started 1st grade today. This should be interesting, a full day with no aid. He was already just walking around the class and looking so out of place. I miss him.

Really?????

Well he had his MRI and EEG last month. We found out the the covering to his nerves on his brain shows changes which are consistent with the prenatal drug exposure. Then the EEG showed that he is indeed having seizures. We also had our IEP which did not go well. He has not met any of his goals since the beginning of the year. We used up half our retainer with the lawyers and we have to re do all his IEE's that we did last year. We still don't know where he will be going for next year and I am exhausted. It looks like the fight for his next school year is just starting. I have an appointment with his neurologist this Wed, so I can ask her questions directly. It gets very frustrating when you ask the nurse a question for the doctor, she relays it to the doctor and when you get the answer you have more questions than you started with. Well that is all for now I will update later in the week so that you all can know what is going on.

It's been a while

So here we are again ready for another IEP. This will be his first triennial. Which means it has been 3 years since we started with the school district. I am not looking forward to it as we have had to hire a lawyer because they did not want to offer us any other placement offers. You see they only offered us one placement. By law they have to offer multiple placements when it is special Ed. Everything else, we pretty much agree on. Sometimes I just get so tired of fighting for everything for him. He is so totally worth it but it just gets so darn exhausting. For once I would love for something, that he needs to come without a fight. Is that to much to ask for??? He is going to have an MRI next week and an EEG to follow under general anesthetic. To say I am a little scared about this is an understatement. The last time he had any thing done under any anesthia it was a disaster and he wound up with a pyschotic break.

Guess What??? We won!!!

We got the court papers in the mail today. We won, he gets services. I am so excited. More to follow....

Sometimes ths more you know....

We got some genetic testing done on Josh about a month ago on the request of his neurologist. You see we are going to see a genetic doctor in San Diego on the 27Th. Well I go the results today and they confirmed that his parents are biologically related. We already knew that but because of this there is a chromosome abnormality which causes all of Josh's problems. Now that does not even account for the fact that he was exposed to drugs and alcohol in utero, or that he was born to early. It does not even bring into account that he was abused, neglected and moved to 6 different homes all before he was 2. All of this just means that he is a mess and that only God can heal him. I know now more than ever that God has brought him to us for reason. Some days are harder than others. Like now he has so much anxiety that he does not sleep and when he does he is back in our bed. The neurologist is also putting him on yet another medication for anxiety. It is Zoloft which scares me whenever he starts a new med. Could everyone please pray that it all goes well. I will keep you posted with more new info.

Ok so here it is....

We went to the fair hearing at Regional center yesterday. I have to admit that I did not want to go. I figured that we were just going to lose but I went ahead and went. I am so glad that I did. We hired the neuropshyc that did Josh's evals this past summer. That was worth every penny let me tell you. We walk into the conference room. We sit on one side of the table, the regional center at the other end of the table with the judge sitting at the end. Of course the Regional center goes first and tells why they think we do not qualify for services. They argue that according to the test they administered his IQ was way to high and that disqualifies him. After they had a chance to speak, we got our opportunity to ask questions as well as plead our case. (I did not realize I needed a law degree to be a mom but I had to be a very quick learner). I asked the idiot therapist, oops I digress, from the regional center. Why he administered that particular IQ test even though it was not supposed to be given to a child under 6. He did not have a good answer. I also asked him why he applauded every time Joshua got a right answer but when he got a wrong answer he said nothing. He again denied that and said basically I was lying. After those questions, then it was our turn. First I testified and laid the ground work for Dr. Hennings. We took a small break then came back. Then it was Dr. Hennings turn. She first stated her back ground, schooling and degrees. I had no idea she was so well educated. LOL!!! I guess you would have to be to be a neuro pshyc. Anyways, she started tearing a huge whole through all the testing of the regional center as well as defending her reports. She then continued speaking for over an hour on why Joshua qualified for Regional center services. I was very impressed. After that, it was time for closing arguments. The judge asked the regional center lady if she had any closing arguments, the lady closed her binder and said" we have nothing else to say". Then he turned to me and said do you have any closing arguments and I said " yes I do" and began to just re-emphasize what Dr.Hennings just said. I think I saw the judge smile when that happened. Well we won't know anything for 2 weeks so I will let you know as soon as we know. I just know it is all in God's hands and God surly was speaking through me there because it definitely wasn't me.

Regional center sucks!!!

I know I have not updated this for a while but I have been really busy. We have finally arrived at fighting the regional center for services for Josh. We go to fare hearing on December 13. For those of you that don't know what regional center is, or does I will tell you. They give services such as respite care, in home support service waivers, ot, pt, job training for disabled people as well as self care. Now it is not so much that we need these services right now, other than maybe respite care, but it will be very helpful when Josh gets older for job training and such. The regional center is saying that Josh does not qualify because he is to high functioning. Even though we have therapist, teachers, and reports that state otherwise. It is very frustrating. We have already gone to mediation and Josh has been retested by them. Our next step is fair hearing. I know we have a slim chance of winning but we have to try. On top of all of this Josh is having a real hard time right now with his reactive attachment. He cries so much when I leave he makes himself throw up. Even when I leave him at school he cries, he won't eat. Sleeping is hard for him right now, he wakes up several times a night and wants to come to bed with me. He is also starting with his extreme aggression again. I know God has a plan but sometimes it is hard to hold onto his promises when you are going through this. Oh well that is all for now. I will update after the fair hearing and let you know if we won or lost. I just pray for God's will to be done.

AHHHHHHHHHHHHHHH!!!!!!

I am so frustrated. Josh had two teeth pulled last week. As you can see from my previous blog, he was exposed to nitrous oxide during the procedure. I later found out that kids with special needs and on certain meds should not have this as it can have bad results. Well here we are a week later, still suffering from the consequences of our actions. Josh has not eaten but a few bites in the last week. He has had severe anxiety and panic attacks. We started this mess on Wed July 14th. He went to summer school and came home and fell asleep. Then he was very agitated when he woke up. He then ate a Popsicle and then threw up. Thursday we went to therapy, he was very agitated and freaked out when we left and drove home. This happens sometime so I did not think much of it at the time. Thursday night he still did not eat anything, sucked down his bottle and threw up again. Friday was awful, he was so anxious I could not leave the room he was in. Friday night was the worst, he started hallucinating and was freaking out and very violent and strong. He finally fell asleep after 3 hours of us holding him. He was up and down all night telling us that his tummy hurt and was very anxious. Saturday and Sunday he slept all day. He would not eat anything. Monday we took him to the hospital at Loma Linda. We spent 6 hours there. They did nothing, all they did was start an IV and give him a load of Depakote. His tummy is till hurting, he is still not eating, he is still anxious. We can't get anyone to help us. I really don't know what to do at this point. To top everything else off, we have a very serious IEP at the school district tomorrow. I need a vacation.

A new adventure

Josh had 2 teeth pulled today. This was his first trip to the dentist. He was a little traumatized. The xrays went great he opened his mouth and was very proud of getting pictures of his teeth. Then we waited and waited. We were called back the dentist examined him and said that we should probably "help" his teeth out of his mouth because he already has permanent teeth coming up behind them. We then waited some more of course. Then back into another room where they put a mask over his nose. HE began to giggle, for it was laughing gas. I though oh this won't be so bad. OK so I was wrong, really wrong!!! The dentist numbed his teeth with gel and began to shoot his gums with a needle. He began to freak out of course. It took 3 of us to hold him down. He was crying for me. IT was all I could do not to grab him and run out and say forget it. I know it was in his best interest to pull the teeth out but it just broke my heart that he cried so. Well we are home now with a window in our mouth and waiting for the tooth fairy to arrive tonight.