Thank you prayer warriors, KEEP PRAYING!

The beginning of the steroid treatment just happened to land on the day we'd been planning to go up to Washington for a family reunion/60th birthday and my cousin's baby dedication.  Cousin's from one side of the family I hadn't seen in over 12 years!  Brian decided to stay home with the baby so that he could have as smooth a transition as possible and not put him at risk of infection.  I didn't want to leave the baby when I had no idea how he would react to the new medicine but I trusted that Brian was fully capable and God was in control.  The 3 big kids and I went up north.  We got to be with my dad's family on Saturday evening and mom's on Sunday morning!  We spent the night with my aunt, uncle and sweet cousin's (who loved on the kids) and shared yummy pozole with my whole family after the baby dedication!  Times like these, make me yearn for my REAL HOME in heaven.  It's hard to live so far away from those we love.

Jaron has been VERY sleepy.  He had fewer spasms yesterday (day 2) than he had the day before (3 or 4 clusters compared to 6 or 7).  Brian said that he slept for a couple hours after every dose of medicine.  He slept great last night and was smiling and cooing this morning!  I need to call the pediatrician to schedule a blood pressure check tomorrow.  Thank you so much for the huge response to my email, I was in tears as I read each little "I'm praying" message.  God is so good!

Brian's new job

Our family was so blessed when Brian got a seasonal, part-time job at Costco in November 2009.  He was getting little to no work in construction for several months (like everyone else at the time).  He was offered a permanent position after the holidays and was honored to take it.  The pay was not enough for our family of 6 to live on but it was dependable income and God had multiple blessings in store for us.  First of all, after he'd only been there 4 months, Jaron was born.  If you've followed our blog you know that was the beginning of the most difficult journey our family has been on.  It was a miracle we were paying our mortgage and bills over the last 2 years, another difficult path we've been traveling.  When we heard Jaron's diagnosis, Costco was so generous to give him paid time off to cope with the terrible news.  Our world was turned upside down and I know for Brian as the dad he felt helpless and overwhelmed as everything was totally out of his control.  The staff at Costco were a Godsend!  People were constantly asking him how the baby was and how he was doing!  They shared their own stories, offered to pray for him, and daily assured him they were thinking of our family.  Even a few customers heard our story and came in specifically to talk to him and reassure him about life with a special needs child.  The day before we took Jaron to get his g-tube placed, a couple returned to Costco and the dad asked if Brian wanted to see their son's g-tube.  Brian was really uncomfortable about the whole g-tube idea prior to that day.  That night, when he got home from work, he told me all about it, what it looked like, what the parent's thought about it.  They were very encouraging and positive.  There were other ways that Costco worked with Brian to help our family.  The assistant manager told me one day when I came in to thank her for being so accommodating, that they wanted work to not be another place to cause stress, they knew family was most important.  We were amazed and so blessed!

About a month ago, Brian's grandpa mentioned that the maintenance guy who works for the retirement neighborhood they live in, was retiring.  Grandpa told the homeowner's association that he had a grandson who was licensed and bonded and able to do all the work that they would require.  Brian did some small jobs and gave them a few bids for bigger jobs and they soon were introducing him as "the new maintenance guy".  He has been working there full-time for 2 weeks and even having my brother Jordan help him out.  They have more work than they know what to do with!  There are 253 units in this quiet, well-kept neighborhood that is only 7 minutes from our home.  He is not employed by them but they will give him all the work that is the association's responsibility.  It will be a lot of siding, fencing, painting, and roof and gutter repair.  Also, the homeowner's will get to know him and ask him to fix things inside their home or do remodels, or replace doors and windows, etc.  He's already been offered several of those jobs.  He has the freedom to choose his own hours and take time off if Jaron is in the hospital and there will be work waiting for him.  No more nights and weekends, yippee for mommy and kids!  He has worked every weekend for the last 9 months.  We are just so thankful for how God has guided us and blessed us in mysterious ways!

Praying for a miracle

Jaron had an important appointment this morning with the neurologist.  He has been having infantile spasms 3-5 times a day for the last 20 days.  Basically it looks like a full body crunch and they come in clusters.  So every several seconds his whole body tenses and then relaxes, it lasts 10-30 minutes.  This is a type of seizure that is common with very severe brain abnormalities.  But the neurologist said today that it is actually very rare in general.  It is an indication that the child will never be able to have normal brain activity and development.  With lissencephaly (smooth brain), infantile spasms are inevitable.  But WITH GOD, NOTHING IS IMPOSSIBLE!  Over the last 3 weeks we have been increasing the medicine he was already taking for the first type of seizure he had.  That medicine was having no effect on the spasms but rather making Jaron extremely irritable or sleepy. Some nights he was getting very little sleep and some days he was sleeping for 7 hour stretches and crying a lot more than usual when he was awake.  We spent an hour and a half with the neurologist this morning discussing the next option, which is steroids.  He had blood drawn, blood pressure taken, and a urine sample.  Tomorrow we will start Prednisone to control the spasms.  There are multiple, severe possible side-effects.  Including, extreme irritability, sleeplessness or too sleepy, weight gain and swelling, increased acidity in stomach, extreme hunger, high blood pressure, increased risk of infection (most dangerous side-effect, could quickly lead to death).  The treatment lasts 25 days and is given at a high dose for 2 weeks and then weaned off over 10 days. There are 3 outcomes: 1.) he could do great with the treatment, with or without side-effects, and reduce the amount of spasms or cure them altogether 2.) He could have horrible side-effects making the treatment ineffective so that we have to stop and try some other medication, or 3.) The treatment could work but eventually he could relapse and start having them again.  Basically, being cured of infantile spasms would be nothing short of a miracle.  I am asking you to pray that he does not have any of the severe side-effects and that he would be healed of the spasms.  I believe God can heal Jaron of these spasms and I believe if all of us pray together, very specifically, that God will hear our prayers and bring glory to Himself.  A few promises from the Rock, that I've been thinking about today (sorry I didn't find the exact references).  The prayers of the saints rise to the foot of the throne- He hears us (Revelations).  With man, it is impossible.  With God, nothing is impossible (Luke 1:37).  I don't want to be like a wave tossing aimlessly, our faith must be firm.  Faith, the size of a mustard seed, gives one (through the power of Holy Spirit) the strength to move a mountain.  The same Spirit that raised Jesus from the dead, and healed the lame, blind, broken, bleeding, sinning, sick of the world, worked through the disciples (in the book of Acts) and is in each one of us.  Will you 
claim that power with me?  With complete, confident faith, please join me.  No room for hesitation or doubt.  We bind any foothold the enemy may have in our minds and claim the blood of Christ.  The plan: I will give him the first dose tomorrow morning August 28th at 8 a.m. again at 2 p.m. and then 8 p.m. for the next 14 days.  On September 11th it will be 8 a.m. and 8 p.m.  From September 17-21st it will be 8 a.m. only and then he is done.  Let's see what God has in store for sweet baby Jaron!

Infantile Spasms

I HATE them!  So he had another EEG.  He didn't want to perform the spells he's been having nor did he want to sleep (which somehow gives them a better reading).  This was the one time we were praying he would have the spasms so that we could confirm this is what was going on and try to help him.  After 40 minutes, the EEG tech (who shared her own miraculous story of childhood seizures, brain surgery and seizure freedom) stopped the test and turned the lights on...  And then he started, of course!  So she turned it back on and recorded the spasms for about 5 minutes.  The next day, the neurologist called and decided to maximize the dose of the medication he had already started.  Every 5 days we will increase the dose of Keppra by .2 mL until we reach 1.5 mL, the maximum for his size.  The most likely side effect is irritability.  Now when I was a mom to healthy babies only, this would not have alarmed me.  But with Jaron, irritability is almost unbearable.  The last 2 nights have been very difficult.  He is agitated, fussing and arching off and on throughout most of the night.  Because he gets into such a painful arched position, I can't just let him fuss in the cradle.  Every time he moves, I have to get up and reposition him.  First we moved his cradle right next to my side of the bed.  Last night he was surrounded by 3 pillows in my bed. One under his head, one under his legs and another on the side so he couldn't fall out of the bed.  This way I could be closer when I pulled him out of his "C" shape, and not have to get out of bed every time.  Times like these, I am very thankful for a king sized bed.  When I got up this morning, he was calmly sleeping like a little prince on our huge bed.  I had a horrible kink in my neck but I think I got a few hours of sleep, if you add all the minutes together.  He has the same issues through the day but it's easier to sit and hold him while he cries when there is daylight.  So the side effect is no fun, I'm hoping it will get better as his body adjusts to the increased medication.  Also, he is not having any less spasms so it almost seems like a waste but I know we can't give up too quickly.

The new threat in our house is, "If you don't finish your dinner, we're gonna have to get you a g-tube."  (Sometimes I think it would be a good idea for teensy Hannah :) It worked the first time, but unfortunately they caught on to the impossibility of that.  Now it's a daily joke!

Jaron is doing great with his new feeding regimen.  We haven't changed much, he's still getting 90 mL every 3 hours, slowly dripped in through a pump for an hour.  Then at night he is on a continuous slow feed.  He hasn't been weighed for a week but at his GI follow up last Friday, he was 12' 5"!  He's huge! Every time I try to up the volume he gets upset and throws it up.  He just wants to take it slow.  I'm just happy with progress, alertness, increased interaction and any growth!

A week ago today, he started having infantile spasms a few times every day.  If you're interested, you could find hundreds of videos on YouTube of infantile spasms.  It's not as scary as other types of seizures but it means your brain has severe damage and will never be normal.  I found myself pretty emotional about them because I just don't like it.  I don't like what it means. I don't like what it looks like.  I don't like how it makes him feel agitated and not himself all day.  I don't like that I'm powerless to help him.  Just when we started to really see him become interactive and smile, this started.  We are loving that he is smiling!  That was the one wish Brian and I both had.  It took him a lot longer than normal babies so we were afraid maybe he never would smile.  I just wanted to know that he could show his emotions and that we'd be able to see joy in his life.   I've never been so overjoyed (like I get that giddy, "butterflies in your stomach" feeling) to see my baby smile and even making sounds! WE ALL LOVE IT!!!