Monday, July 30, 2012

GREAT news.  They had scheduled a cerebral angio for Allie before her upcoming surgery in August.  I called neurosurgery and talked to Bob. Those cerebral angios are rough on Allie.  This would have been her 7th, I believe.  The insert a catheter in the main artery in her right leg, they thread it up into her brain, inject the dye and see where she has blood flow to her brain. She has to remain still for 6 hours post op, and has to be sedated. Bob was able to track down the "fellow" and they decided to cancel the angio.  They are going to use the one they JUST DID in May.  Thank you Lord!!!

Sunday, July 29, 2012

Pastor Ray was speaking in church this morning about going in deep for Christ.  He was talking about things like, taking on a new job that you have no idea how to do and relying solely on Christ to help you fulfill that calling.  He was also talking about forgiveness.  God had been putting on my heart the need to ask for forgiveness from a couple of people who had been attacking me, but by no means did I act Christ like back toward them. I called each one and asked for their forgiveness.  Neither of them "forgave" me, but it is my prayer for them to eventually forgive. I have forgiven their behavior and even though, they did not forgive me, I felt an immediate sense of relief and peace.  I did what Christ wanted me to do and it was HARD. I did it and I was instantly relieved and blessed.  It so funny when the message on Sunday seems to be aimed directly at me.  : )

Saturday, July 28, 2012

It is so frustrating watching your child go through painful procedures several times a year.  Allison is scheduled for another brain angio before her 5th brain surgery at Stanford.  The brain angion inserts a tube from a main artery in her thigh and threads it up into her brain.  It shoots dye into the brain to see what areas are not getting enough blood.  It is frustrating because she just had this done in May.  She has to stay still for 6 hours after the procedure and it is very difficult.  She also must be sedated.  Sometimes I don't know if I can take very much more of this.

Thursday, July 26, 2012

Well, we found out at therapy that Allie's hamstrings are tight and we need to help her to stretch them so that she can place her heel fully onto the ground.  Also problematic is the fact that her tone has tightened in her arm, wrist and hand and her grasp is almost non-existent.  Rough day when you realize that your baby girl is going backwards.  I knew she was having TiAs every day, but am praying that this is not what is causing all of these troubles.

Tuesday, July 24, 2012

Allie went to art camp this week with her art teacher.  She painted the following pictures.  She even said that "brainy" went to sleep while she was at art camp, but she didn't say anything to anyone about it. I am so proud of all she can accomplish despite all of her difficulties.

Friday, July 20, 2012

In the car my children made predictions for each other about their future.  Adam is certain that Emma will be singing in her house and will ignore her children's cries for milk.  Brennan said that Allie will be a mean mommy and will beat her children up (he was dodging her fists the whole time.)  Brennan predicts that Adam will live in a dumpster with one of his friends.  Adam decided that Brennan will pester the fire out of his children.  As you can tell, they all have very high expectations for each other.

Tuesday, July 17, 2012

Allie is taking piano lessons.  Here she is playing "Twinkle Twinkle Little Star."
The girls asked me if I remembered them throwing coins into the fountain at the London Bridge and making a wish.  I said,"yes, why?"  Emma said, "I wished I could go on a boat and we got to ride in Mrs. Watkins boat on the fourth of July."  Allie says, "I wished I could fly."  : )

Sunday, July 15, 2012

No one can convince me that God doesn't have a plan for my life.  Before I even had children, I did seminars on Attention Deficit Disorder and Brain Development.  Before I had children, I worked with families who had children with special needs.  I worked with a family whose baby was born at 24 weeks and weighed less than a pound.  I worked with a family whose two year old had apraxia.  I worked with several who had autism and sensory integration dysfunction.  Before I had children, I was trained to do occupational, physical and speech therapy for children who were developmentally delayed.  God was helping to prepare me for what lay ahead.  Did I have any idea that I would have a child with ADHD, Autism and apraxia, and Twins born 10 weeks early at 2 pounds 14 ounces and 1 pound 15 ounces.  I had no idea, nor had the thought even entered my mind.  God knew, He knew all the while.

Saturday, July 14, 2012

I remember playing the game "Life" with my sister when we were kids.  We would "get married" and gather our children (we always seemed to have 2 boys and twin girls) Weird how like real life that was, but the rest has been BOGUS!  Where is the square that you land on that says, "high risk pregnancy - bedrest 10 weeks, miss work" - go back two steps."  Or, "your daughter has a stroke, seek immediate medical attention, pay 3000.00 dollar deductible for brain surgery and travel expenses to the only hospital who specializes in these types of things - go back 6 spaces." At this point I would have landed on this particular spot 5 times!!  Then where is the square that says, "son diagnosed with autism, get child on IEP, advocate for him, this is now your full time job - wages = $0 dollars."  I never saw the square that said, "Get on your knees and pray immediately, your son has ADHD and must be put on medication or he may not survive his teen years."  Of course, my game board would have had several spots where I could pray and lean on God for peace and advance 10 spots.  But seriously, where is that stinkin game!!!!

Friday, July 13, 2012

You know that moment when your two boys who are normally trying to kill each other, are actually bonding while discussing the typical traits of a Democrat versus a Republican (at 11 and 14)? I just had one of those.  It must be Friday the 13th or something.  The earth must be completely off its axis.

Thursday, July 12, 2012

My mother called me and asked why I didn't blog yesterday.  She said "boring day?"  I laughed.  Actually, I couldn't remember my password.  They tell you not to write it down anywhere.  They make you put capital letters, lowercase letters, numbers and symbols in it.  Seriously, how can I possibly remember all of those. 

I am under a lot of stress right now, in fact, I woke up this morning having a panic attack and a headache.  On a funny note, I had a nightmare that snakes were after me all while I was singing on stage with Rick Springfield to a Katy Perry song. 

Pretty sure I have finally leaped off of the edge.  Luckily I have friends and family who pray for me daily who throw a rope to me and pull me right back up.  I just hope the dream isn't one of those repeaters.  LOL

Tuesday, July 10, 2012

So I have to ask these questions, in order to look at the brighter side of things:

1.  At what point do you get the benefits of a punch card for brain surgeries, I mean, shouldn't they be buy four, get one FREE?

2.  If the divorce rate for parents of children with special needs is 80%, and we have four of them, does it make our divorce rate 320%?

Monday, July 9, 2012

This past week was quite eventful.  We received a call from Stanford hospital that Allison is at risk for another stroke unless she has a surgery called an "Omental Transposition".  This will mark her 5th surgery since the age of four.  I had a few days for my nervous breakdown and now I am better.  We are waiting for them to call with a date.  On a lighter note, my son Adam who has autism, has made an adult golf putter his new "lovey".  He sleeps with it and in fact, I found it in the freezer on Thursday. Emma had blood drawn to check her thyroid, which we found out today is still low.  They are upping her dose.  Brennan continues to act like a maniac off of his meds.  He got the milk, cereal, and bowl out this morning, forgot he was making his own breakfast and retreated to his room.  I had to remind him that he was making his breakfast. I am praying they will call soon and tell us when we have to jet off to sunny California for another brain surgery.

Sunday, July 8, 2012

My four "gifts" are all special.  Brennan is 14 and has been diagnosed with ADHD, Emma is 8 and hass Growth Hormone Deficiency for which she takes nightly injections. Allie is 8 and is diagnosed with Moyamoya and has undergone 4 brain surgeries in the last four years. Adam is 11 and has been diagnosed with sensory integration dysfunction, apraxia and autism.  My children make me laugh and cry and there is never a dull moment in our house as I will blog their weekly experiences in this blog.