Day 25...NO SHOT!

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 from the water weight.

On Friday, the 11th, we were able to lower the dosage from .4ML twice a day to .15ML once a day.  The doctors told us that usually you would see the children come out of the "roid rage" fairly quickly after lowering the dosage and we were definitely ready to get our lil man back.  That night was also the first day of our vacation and we were headed to the beach for hopefully a little relaxation for everyone.  We drove through the night to get there (7 hour drive) and note to self, we won't be doing that again!  I think I am getting old...I remember the days when I could pull an all-nighter like a champ...no more...I was down for the count for the next 3 days!!  Logan did great though and seemed to enjoy the change of scenery.  By about mid-day on Saturday it seemed like our lil boy was coming around.  He was cuddling with me and would let me hold him, even getting little smiles. From there on he just got better and better until he was full on laughing at nothing at all, playing with his toys again and smiling more than we had ever seen (even pre spasms).  I think the beach agreed with him!  Here is a video of him catching the wind and some pictures of our lil beach bum!

Ohhh...this sand feels great on my toes!!

I think I could stay at the beach all the time!!

We had to come back on Wednesday (drove during the day...so much better!) because we had some doctors appointments on Thursday and Friday.  When we weighed him on Thursday he had lost a whole pound since leaving for the beach, I knew he was looking a lot better and had a ton of full diapers but man, a pound of water weight in a week seems crazy but made him so much more comfortable, no more buddha baby here!!  Thursday was the Physical Therapist who has seen him since he was 4 months old.  She felt he was definitely looking much better however we did notice that there was a bit of regression while the spasms were occurring.  Logan has never really liked tummy time but he had started trying to roll a little bit...now he isn't doing any rolling but we are working with him and he has plenty of time to catch up.  On the positive side, he is doing much better on his sitting!!

We had the neurologist, helmet delivery and the ophthalmologist on Friday, it was quite the whirlwind day of doctors appts.  The neurologist was very pleased with his progress, his blood pressure was back to normal and the PA (who we have been working with during the shots) even grabbed both of the doctors so they could see how well he was doing.  They did warn us that there is a chance that after the steroids get out of the system that the spasms can come back and that at the EEG the hysarrhythmia may be gone but the EEG could still be abnormal which would mean there is another underlying issue.  We are just hoping and praying that on the 30th when we get our new EEG completed that it is all clear and normal, we only have 3 more treatments left and they are only .05ML every other day now so today was our first day without a shot and we couldn't be happier!!  I think we are all just ready to put this chapter behind us!

After that appointment we went to get his helmet.  Since he was stuck in my pelvis for so long the back right side of his head isn't quite as round as the rest and the doctors felt as if he would benefit from having a helmet.  I am still a bit skeptical about the whole thing but I want to do everything we can to make things better for this lil guy so I will do it.  He doesn't seem to mind it much which is good...I think its harder on Mommy than baby!

You think I look cool now...just wait until next week!!

Helmet?  What Helmet??

Oh you know, just drinking out of a cup like a big boy!

Finally, at the ophthalmologist appointment we think we finally figured out a little more about his eyes, as he put it, Logan is becoming a clearer puzzle to him.  We have always noticed that the right eyelid can be a little "lazy" looking or at times it gets really big.  Since he has started eating solids we have also noticed that his eyelid moves with his jaw.  The doctor had asked me if this happened before but with the bottles I had never noticed it.  Well it turns out he has something called Jaw-wink, there are some neurons that have somehow gotten crossed and are now connect the eyelid and the jaw.  He said it is relatively common (his nephew has it) and it doesn't effect his sight it is just something he will have for the rest of his life.  There isn't anything you can really do to fix it, I just figure it will be his cool bar trick when he gets older!  :)

Phew, well if you are still reading after this long post thanks and I will try to update more often just enjoying our vacation.  Thanks again for all the prayers and happy thoughts, please keep them coming, we aren't out of the woods quite yet!!