Logan's Journey

Love this sweet boy!! Over the past couple days of treatment it seems like we are making some progress!  We are noticing some more smiles come through, although not quite back up to where we were before but getting closer.  He luckily has still been in pretty good spirits besides an occasional meltdown here and there but those have really only come after long waits at the doctors office and honestly I don't blame him...I kinda want to meltdown too!  He has been pretty sleepy and cuddly lately not necessarily wanting to take long naps but taking a bunch of little cat naps, mainly when someone is holding him!! Looks like the sleepiness is rubbing off on Gammy! We did get some good news on Friday, the neurologists office called us to let us know that the blood tests have all come back normal and at this point they aren't sure what is causing the spasms.  If you remember in my first post we said that you really want to have the cryptogenic version as it has a h...

Yesterday turned out to be quite the productive (and long) day but we are starting to move forward.  We had to be at the hospital at 9:45 to check in for the MRI, finally around 11 we were taken back and then around 12:15 they took Logan in for the procedure. Poor guy hadn't had anything to eat since 4:30 that morning so towards the end we had quite the angry little buddy on our hands but he was such a trooper. The MRI took about an hour and a half and they said he did a great job. We can do it!! Sleepy boy after MRI... By this point we had missed our appt at the neurologists but luckily they were able to fit us in earlier so around 2:30 we headed that way (luckily it was only across the street from the hospital).  We met with one of the PA's there and they walked us through how to administer the shots.  We practiced on an orange which is supposed to be the most like human skin (in case you ever needed that piece of trivia)!  After Mommy and Daddy each prac...

Today will be a big day for us...the MRI and our first day of treatment!  The steroids arrived yesterday morning and we were able to get on the schedule for today for them to teach us how to administer the shots.  We are so hopeful that they will work and quickly.  They say that if they are going to work you usually see a difference quickly, within the first week of treatment, so fingers and toes crossed that will be the case for us as well! We had to watch some videos last night to prepare us on how to give the shots and a little more information about the medication and the side effects.  I am not sure how I feel about us having to give shots to our own baby but I know it is for the best and we will do whatever it takes!  Some of the side effects that they said are pretty common in infants include weight gain / water bloating, I guess on the positive side Logan is only at about 10% on his weight and 67% on his height...maybe now he can catch up to his he...

My little cuddle bug!! Wow, I have to say how amazed I am by the support we have received in such a short time period (and without me even letting most of you know this was out there)!  Thank you all so much for your sweet words and prayers we will take all we can get!! Yesterday was a pretty good day all in all.  The doctor had prescribed us Klonopin to help with the seizures while we wait for the steroids to get in.  Logan had 2 episodes in the early afternoon but once we gave him the Klonopin we didn't see him have any others.  I am not sure that this is helping the Hypsarrythmia but at least he isn't getting too uncomfortable with the physical side of the episodes.  I will take any small wins we can get!  We also got some other good news yesterday, the steroids, which we didn't think we would get to start until Monday should be here today!!  I am hoping that we will be able to move up our appt with the doctor to tomorrow so we can get this...

I am not really sure where to start or if anyone is even out there anymore looking at this blog but I have realized I could use an outlet to continue to share Logan's Journey.  Logan is now 8 months old or 6 months adjusted and so much has happened in this short time.  I guess I should start out by filling you all in on some of the things that were omitted originally in an attempt to focus on the happy and good vs the scary and unknown. When Logan was about a month old, we received a call from the doctors that there were some issues with his cranial ultrasounds.  What we came to find out is that Logan has bilateral cystic PVL (Periventricular Leukomalacia) which means that cysts formed on his brain and caused there to be "holes" in his white matter.  This was caused by a lack of oxygen at some point in my pregnancy, whether it was before or after my water broke, at birth when he wasn't breathing or from being stuck in my pelvis, is something we will never know but ...