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.