1 Year Since Emmalin's Corpus Callosotomy

One year ago today, Jarrad and I had one of the HARDEST days of our life!  It was on May 2nd, 2012 that Emmalin had her Corpus Callosoty (brain surgery) to try to help with seizure control.  Between the length of the surgery and ALL of the risks that were involved with it, I would have to say that not only was it the hardest day, but it was also the longest and scariest day I've ever had in my life!  Of course Emmalin did great through it (as she always seems to do), but I can honestly say that we NEVER expected this past year to be as "eventful" as it turned out to be!  To say the least, this past year has been a really hard one!! If I am going to be completely honest I would have to say that in some ways this past year has really seemed like it has been the length of 10 years.  Emmalin has had some highs and A LOT of lows.  Saying that, of course I ALWAYS know that it could have been SO much worse, but what I was meaning was out of Emmalin's 4.5 years of being on this Earth, this has BY FAR been her hardest!

Most of the major things that have happened in the past year:
~Emmalin had her Corpus Callosotomy Surgery
~About a month later her incision got infected and Emmalin was in the hospital an additional 6 days (plus send home with a PICC line for antibiotics - she was on atleast 2 different antibiotics for a little over a month).
~In August because Emmalin was having SUCH difficulties swallowing (she was aspirating foods), Emmalin officially had to COMPLETELY stop eating by mouth.
~Throughout the next couple of months Emmalin had numerous ear infections.
~In November Emmalin was admitted back in the St. Louis Children's Hospital for another 24 hour EEG because we (me, Jarrad, and Dr. Weisenberg) had decided Emmalin was at the point that she needed to have the Vagus Nerve Stimulator (VNS) placed to also help with seizure control because she was still having SO many seizures.
~We also found out that Emmalin was going to need ear tubes to be placed because she was getting SO many ear infections.
~Emmalin was sick on and off from Thanksgiving on and her VNS surgery ended up having to be rescheduled 3 times before she was well enough to have the surgery.
~New Years Day Emmalin was diagnosed with pneumonia for the first time (right lung only).
~Emmain FINALLY had her VNS surgery on January 23rd.  
~The beginning of March Emmalin we thought her neck incision from her VNS surgery got infected and so we made an emergency trip to the St. Louis Children's Hospital.  While we were there, Emmalin had to be given oxygen for the first time because she had a virus and got distressed breathing (so was in the hospital for 3 days)
~ April 25th Emmalin had Strabismus surgery to try to have her eyes realigned and she also got her ear tubes placed (finally)

As I was saying, you could DEFINITELY say that this has been a big year for Emmalin!  And although we are incredibly grateful that things were not worse than they were (because we realize they could ALWAYS be worse).  As you read above, Emmalin's year didn't really start out on the best note on January 1st because that's when we found out she had pneumonia.  So I am going to start a "new year" now, 1 year after Emmalin's brain surgery.  We are REALLY  hoping this next year will be less "eventful".  We plan on pushing forward with therapies and doing everything we can to help Emmalin make great strides in the right direction not only strength wise but also cognitively.

                                                                  God is Good!
                                                       

Emmalin resting peacefully :)

First Time Getting Oxygen :(

Although Emmalin didn't not feel that well while in the hospital, I was able
to catch this small smile while she was awake for about 15 minutes.

The beginning of March of this year (2013), we ended up having to make an emergency trip back up to the St. Louis Children's Hospital.  The first reason we headed that direction was because we thought Emmalin's incision on her neck from her VNS surgery had got infected.   Of course we didn't discover all of this until around 5:00pm on Saturday.  After talking with the doctors we had decided that since it was already so late in the day, that we were going to head that direction at 5:00am on Sunday to put us at the St. Louis Children's Hospital ER around 9:00am (we had to go through the ER because the normal "office" was closed).  To our surprise, at 3:30am on Sunday, Emmalin started having distressed breathing.  I guess I should mention that Friday evening Emmalin had started to get a cold, but when she typically gets colds she doesn't get distressed breathing.  Anyway... so even though we were originally going to the hospital to get her incision checked out, Emmalin also ended up being treated for something completely different, distressed breathing.
Back to that day... by the time we get to the St. Louis Children's ER, Emmalin's breathing was not that great and they immediately put her on oxygen.  I thought that she had just developed pneumonia because she had just got over pneumonia (having it for the first time ever) the beginning of January.  I just assumed that since she had just had pneumonia SO recently that Emmalin just got it a lot quicker this time.  So once they got the oxygen on Emmalin, they did a lung x-ray to check her lungs, to our surprise they were clear.  What we did find was that she had the Rhinovirus and Branchiolitis.
The Rhinovirus is literally just a common cold.  But what we didn't know is that it is VERY common for the Rhinovirus to cause distressed breathing in kids with neurological issues.
The Bronchiolitis diagnosis meant that even though the lungs were just fine, the areas above them were inflamed (which was helping cause the distress).  Emmalin started out on 4 Liters of Oxygen and was then weaned down to 2 Liters of Oxygen by the time she got to her room on the 12th floor (that's the neuro floor).  Emmalin was off of oxygen by 6pm on Monday night and so she was released on Tuesday afternoon (you are supposed to be off oxygen for 24 hrs before you can be released from the hospital).
As I had said in the post title, this was Emmalin's first time to have to be put on Oxygen.  To be honest, it was a sad moment because I have been told that once CDKL5 kiddos have to be put on it the first time, it seems to be easier for them to need it when they get sick after that... I guess we will see (but I sure hope they are wrong).  On the up side, Emmalin did great weaning off of the O2 and for that we are SO grateful!!!

As far as the infection goes that was on her neck, it ended up just being stitches that had come through the skin.  When the stitches came through it created some puss around the stitch and that is what we saw... but it was with the same doctor that Emmalin's brain surgery incision got infected and so this time the doctor wasn't taking ANY chances.  So even though it ended up  being nothing, while we were in the ER the doctor took a sample of the puss and took it to grow in a lab for a couple of days.  While she was being treated for the Rhinovirus, they went ahead and gave Emmalin 2 IV antibiotics JUST in case something grew in the lab that they were not anticipating.  Emmalin was given Vancomycin and Cefepime (which is what she was put on when her brain surgery incision got infected).

So Emmalin was admitted on Sunday AM and got released that following Tuesday afternoon.  As I said before, it was a VERY unexpected trip, but we are SO grateful that everything went as well as it did.

This has been an increablibly hard winter for Emmalin as far as sickness goes, to be honest this has been her worst winter so far with sickness.   To say the least, we are REALLY looking forward to warmer weather!!

God is good!

Our sleeping beauty :)

Emmalin Playing Her "Piano"

One of our amazing friends is letting us use their Kindle Fire.  We found an app that looks like a little piano.  This is Emmalin playing with it.  It's SO amazing to see her open her hands up as she hears the sounds as she touches the "keys".

This may not seem like a big deal to some people, but to us this was a HUGE step (or maybe even leap) forward for Emmalin and learning to use technology :)