Logan's Journey

Ok, so I know I promised updates more regularly and I am already slacking but hopefully you will all forgive me!  :) We had some good news recently and I wanted to share it with you all...as I may have mentioned, the doctors believe that ideally Logan should be having professional therapy almost daily with a mixture of physical, occupational and speech.  My insurance however only allows us to have 20 a year and even then we are still responsible for the $50 copay.  This was making it difficult to really get all of the therapy in place that can help Logan make the most progress. There is a program called Katie Beckett that actually allows you to apply for Medicaid for a child with disabilities even if the parents do not qualify for it based on income.  I had to fill out / put together about 350 pages of documentation about Logan's condition, get it signed from multiple doctors and deliver everything in a perfect packet to the Katie Beckett offices.  This ...

Happy Boy!! First I want to say I am sorry it has been so long since my last update but I am going to try to find the time (somewhere between working full time, the doctors appts and traveling to see clients) to keep you all updated on Logan's Journey, as it is quite a unique one.  I have realized that this journey can be very lonely at times and that is my doing by not sharing as much as I could but hoping that this might be an outlet to get our story out there to the friends and family that love us so much and possibly anyone else going through the same thing.   My first birthday...the cake was more fun to smash than eat!! Anyways, so I guess I have a lot to update everyone on, so bare with me on this first post!  :)  Ever since the Infantile Spasms stopped in July, Logan has been seizure free...WOOHOO!!  He takes seizure medication twice a day to keep them at bay but from what we are able to tell they have stopped which is great news.  Sin...

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 th...

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 lit...

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 b...

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...

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 ...