Logan's Journey

Guess what??  I am 10 months old!!  :) I am two days late but our lil man is 10 months old now (8 months adjusted).  Half of me feels like it is crazy that it has been 10 months already and half of me feels like it has been a pretty long 10 months!!  Since getting put on the new medicine, Logan seems to be making great progress.  He is rolling over on his own from his tummy to back and looks to be close to going from back to tummy.  He is sitting supported and holding his head a bunch better and he is just the happiest and sweetest baby these days!  We go back in 2 weeks to the neurologist for a check up but so far so good...it is amazing the difference we have seen since we got the Hypsarrythmia and minor seizures under control.  Fingers crossed that this progress continues.  In honor of Logan's 10 month birthday I thought I would share some pics from the last month...sorry, there are a lot but hopefully they make you smile as much as they make me smile!! Hey guys!! I

We received a call this morning from the Neurologist's office with the results of Logan's EEG.  When we talked to the doctor about the treatment we were doing for the Infantile Spasms, he told us that there were 3 things that could happen after we finished the steroids: 1. Everything is gone and the EEG looks normal meaning Logan has been cured of the IS and Hypsarrythmia. 2.  That the Hypsarrythmia would be gone but that the EEG could still be abnormal indicating the possibility of other types of seizures occurring or developing. 3.  The Hypsarrythmia was still there and we would need to move on to the next type of medicine. Obviously with these 3 options they go from best to worst case scenario.  Given what they had told us on Wednesday when we were in the office, we knew we could count number 3 out but there still was a chance we would have option 2.  Well, today it was confirmed that they are still seeing some abnormal activity in Logan's EEG (some little spikes a

So yesterday was a big day (as I am sure many of you were aware) as we had our second EEG to see how the steroid treatment went.  We got to the doctors office and received many ohhh's and ahhh's over his new helmet, some of the ladies even wanted to take pictures with him!  :)  We were taken back to the EEG pretty quickly and the technician started putting the probes on Logan's head.  I was so proud of him, he smiled and laughed and didn't cry once through the entire one hour process.  The technician even mentioned that he was doing better than most of the big kids!! Hehe, that tickles! Just hanging out and letting them read my brain! After getting all set up she went over to start reading the EEG and within about a minute she informed us that it was GONE!!  That is right, the Hypsarrythmia is GONE!!!  We were so excited, I started tearing up and was just so proud of my little fighter.  We still have to wait for the official results to be read and we should ha

So this morning was a big day for us...we administered our LAST shot!!  Through the course of this experience we have had to give our poor little man 43 shots and to know that we can now just enjoy our mornings without having that as a wake-up call is super exciting!  It will be even more exciting if indeed the shots worked.  We go back in on the 30th for his follow up EEG to see if the Hypsarrythmia is gone, we haven't seen / noticed any spasms since the second day of treatment so all fingers and toes are crossed and really praying that we can put this chapter behind us. In my last post I hinted to the fact that there was something cool coming for Logan's helmet and we got it back yesterday and I couldn't be happier with the results!!  When we found out that Logan would need a helmet I started doing some research on how to make this experience a little better for all of us (ok, who am I kidding, really for me!) and I found that there are people who will paint your helmet

Just chillin' at the beach!  Hi everyone, I am sorry for not writing earlier but things have been pretty busy for us.  There seems to be so much that happened over the last week and a half I am not quite sure where to start! I guess first of all, when Logan went to the doctor almost 2 weeks ago for his check-up we found out that he has broken his first tooth!!  He had been so miserable and not wanting to be touched that we didn't even realize this had happened.  Poor thing, no wonder he was so upset, breaking a tooth and steroids...I wouldn't want to be touched either!!  At that doctors appointment we also found out that Logan's blood pressure was a little high, the doctors weren't overly concerned as it is a common side effect of the steroids and the following day was going to be our last day of high dosage shots.  By this point he had gained about 2 pounds since starting treatment and he definitely looked very uncomfortable and his skin had become so puffy fro

We are now 13 days into the 14 days of heavy steroid dosage and it couldn't end soon enough.  Over the past week or so our lil man has gotten so swollen and uncomfortable!!  He doesn't want to be held or touched and just wants to lay on his own.  Bath's which used to be one of his favorites are now very uncomfortable for him and involve a lot of crying instead of splashing.  However, we have talked to the doctors and all of this is normal, she said that about half of the babies will act like Logan, being quiet wanting to be left alone and the other half just cry all day, I guess giving the alternative we prefer the side effects we ended up with but either way it is really hard to see. Is this over yet?? Since starting the steroids he has gained over a pound and a half which to me just seems crazy.  If you relate that to us it would be like gaining 20+ pounds in such a short time, no wonder he is so cranky and unhappy.  The smiles have completely stopped at this point

Happy 4th of July everyone!! We have officially been on the steroids for over a week now and had our first check-up Thursday morning.  The doctor was very happy with Logan's progress and felt very hopeful that the treatment may knock this out since we haven't seen any big spasms since last Saturday!  We have seen some little movements and she said that is likely little spasms he may be having but she didn't seem quite as concerned about them.  One of the main reasons we had to go in for the check-up was to test his blood pressure, they said that a lot of kids blood pressure rises while on the steroids.  Well, it turns out that Logan is just like his Mommy in all things blood related...we have the same blood type, no one can ever find our veins and he has perfect blood pressure (Chris was always amazed that during my entire pregnancy and labor my blood pressure was always perfect, not sure the same could have been said about Daddy)!  :) Now that Logan has been on the m

Over the last couple days there definitely has seemed to be a lot of progress made.  Over the weekend we only noticed ONE episode compared the the ELEVEN he had last weekend and we didn't notice any yesterday!!  Also, he seems to actually be in very good spirits.  He is smiling a little more, sleeping a lot but being really sweet and cuddly while he is up.  I do think that his little belly is getting a bit bigger and his face is filling out some but like I said, he was only at 7% in weight and 67% in height so it is just helping him catch up.  I am so proud of him though, he is being such a lil sport when it comes to the shots...at least one of the three of us are taking them a little better!! Before all of this came about the doctors had decided that it would be best for Logan to get a helmet to help with the shaping of his head, so yesterday we went in to get fitted.  Doesn't seem quite fair that he has yet another thing to deal with but from what everyone has said they don

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 higher chanc

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 practiced once

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 height and all those botto

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 started ASAP! Alrig

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 i