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.