Emma Bear Update 2

WHAT A DIFFERENCE A WEEK MAKES! PRAISE GOD!

To all of you who have been diligent in prayer, please take a moment and thank HIM from the bottom of your heart for a miraculous week!  After I updated you all last Saturday Emma smiled for us for the first time in weeks!  We were so excited!  First we got a smile on her changing table and we had another one later that night.  On Sunday it was a smile-fest!  I am sure this is because it had been over 24 hours since her last spasm freeing her mind up a bit for some happiness!  Doug and I saw smiles all day long and posted what we could get a picture of.  Then Sunday night came with a spasm.  A 12 minute long seizure which broke our hearts.

Monday started Day 8 AND WE HAVEN'T HAD A SEIZURE SINCE! What a week! Emma is still waking up in the night (probably because she is ravenous for food) but I can usually get her back to bed within an hour.  We still have a fussy baby but nothing like the week before (or maybe we are getting more used to it:). Nevertheless, we have a baby that smiles in the morning when you first see her face and continues to smile throughout the day.  She follows us again as we walk about, she gets excited, she plays, rolls over and gets frustrated that she isn't mobile yet.  She is getting her personality back! She isn't playing with her toys as much as she used to just yet but she is working on it.

So where do we go from here?  Well, we take her to the hospital next week for a follow-up EEG to see how her brain activity is doing.  We are aiming for a normal EEG with no hypsarrhythmia (chaotic brain waves).  Please keep her in your prayers.  We also have to be careful as we wean her off of the steroid to make sure the spasms don't come back.  We are by no means in the clear but we are overjoyed at God's Love for us! I am certain we are headed in the right direction.  I joined yahoo groups IS board and there are so many children who battle these spasms relentlessly.  How blessed are we that the ACTH treatment is working.

Thank you again to all of you for all your support.  Whether you brought dinner this week, sent emails and posts or prayed diligently for our family, we love you and thank you from the bottom of our hearts.  We know that we have powerful prayer warriors on our side standing with us as we walk this difficult journey.  

I thank God that I know Him better and praise Him for choosing Doug and I to watch over this angel of His.  She is amazing!

Much Love,

The Wilson's

Doug, Dawn, Brittany, Emma Grace and baby Henry!:)

Update - Emma Bear

Hello All who are in prayer and thoughts with us as we faithfully await the day Emma Grace's spasms will stop, her EEG will be normal and we can praise GOD for another miracle when it comes to our little angel.  This is day 6 of the treatment and boy has this week been tough for us all.  It started with us going to pick up the medicine from the doctor on Monday.  Doug chose to be the one to administer the shot, which is good since I'm a big baby when it comes to these things.  The nurse showed Doug how to do it and requested he come back and show her how he does it the next day.  I was a bit nervous since they told us most families choose to admit their infants into the hospital for 24 to 48 hours while they learn how to administer this drug, but Doug assured me he could do it.  I definitely shouldn't doubt my husband for he has shown an unwavering ability to hold down the fort and get things done in the Wilson house.  I picked real good!:) He is a STUD:)

Emma had at least two spasms a day for the next few days with one of them being the longest seizure yet at over 16 minutes long.  Doug, Meme and I just hold her while she has them and love on her the best we can.  I pray the entire time and often read scripture to her that focuses on healing and God's amazing love for us knowing that he will perform a miracle so we can glorify him.  As the days have passed Emma has become extremely agitated and fusses all day long.  The only time she doesn't fuss is when she is sleeping.  At night it gets worse turning into a cry.  Day 3 we started to see her having trouble with her sleeping patterns at night. She seems to sleep for 3 to 4 hours but then wakes up for 2 to 3 hours in the middle of the night.   I am praying this will get better.  Doug and I take turns waking up with her but as many you know I am in my second trimester and just started a new job.  To say the least it has been tough.

Day 4 Emma was seizure free, Praise God!  Unfortunately we saw seizure activity yesterday but only once.  We have had a seizure free day before (but only once) so we remain in the "waiting room" praying faithfully.  I do pray for God's will but I also get specific and pray for Emma Grace to be healed, for her to be comfortable and peaceful.  For God to take the seizures from her so she can smile again, so she can develop.  I can't wait to see my baby's smile. I think I miss that the most.  It has been over a week since we have had any smiles and before that they were few and far between. It is absolutely heartbreaking.  So far today we have been seizure free.  The good news is the seizures seem to becoming less and less and the one yesterday wasn't extremely long comparatively speaking.  

So, I write this to all of you who follow us on here and pray for us out there.  We can't thank you enough.  Please continue to stay vigilant in prayer.  Also please know that I am so sorry for not responding to everyone's messages on facebook.  Many have sent emails and cards.  Just know that I appreciate them more than you know. I would love to update you all a week from now with even better news. God willing, I will:). 

Much Love,

The Wilson's