St. Louis Update

Hi everyone and hope you all had a Happy Thanksgiving!!!  I want to first thank you all for the love and prayers and good vibes that you sent our way last week, we definitely felt them and it helped to know we had so many wonderful people in our life!!  

On the plane and ready to go!

Sorry for a bit of a delayed update, just now getting back in front of the computer and trying to get all my thoughts together for the blog!  I will let you know that it was a very successful trip and Logie is doing great.  We headed out on Sunday afternoon and were able to check into the hotel by about 3:30 St. Louis time.  I was able to upgrade us to a club suite which was fantastic, we had two rooms (allowing us to be in one and Logie in the other) and the club room had breakfast and evening drinks / hors d'oeuvres, when traveling with a 3 year this is crucial, not just the drink part (don't get me wrong that was very helpful) but being able to get some food from across the hall and having access to water bottles / apple juice at any time of the day was essential.  We ended up making that our dinner 2 out of the 3 nights we were there.

Monday was a big day for us and SO very long!!  We were at the hospital from 9-5 with only about an hour and a half break for lunch.  Our first appointment was with Dr. Park the doctor who does the SDR surgery I have discussed before.  While we were waiting on our appointment we met a nice family with a little boy about Logan's age coming back for their 3 month checkup.  It was great to hear how their experience had been with Dr. Park and to see the progress their little guy had made, a little bit of reassurance as we went into the meeting.  They first had us watch a video about the surgery and then we met with the Physical Therapist.  She looked over Logie and took some measurements then talked through with us the therapy requirements that we would need when we would go home.  It didn't sound quite as intense as we had initially thought, basically they want him in some kind of therapy every day specifically PT, OT based and right now we already have 4.  She said she thought we could probably add another PT or 2 in but otherwise we were pretty well covered.

Being silly with Daddy while waiting on our turn!

Exploring a hospital means cleaning your hands A LOT!!!

Just love that curly head!!

Next appointment was with Dr. Park himself who took a look at Logan crawling and walking and pulling up.  After about 10 min he said that he felt that Logan would be an "EXCELLENT" candidate for SDR and he believes that in a year or two he would even be an independent walker!!!!!!  That was exactly what we hoped to hear as everything about this is leading to the ability for him to walk.  He did recommend we do it as soon as possible as the longer you wait the more orthopedic issues you may run into.  So...we are looking tentatively now at scheduling this in February.  We would be in St. Louis for about a week (Logan in the hospital for about 6 days) and then we would be able to come home and work hard on our therapy!  Final date TBD but we will let everyone know as we get closer for sure!!

This was hanging in Dr. Park's office and it just spoke to me...we WILL walk darling!!

After that we had a little break and went and got some "Cheese Dip" one of Logies favorites (not sure where he could have possibly gotten that from) and then tried to keep him awake before the next appt at 1:45.  We found a little grocery store near our hotel that had a piano and Logan loved playing it so that was a welcome 10 min distraction...here is a little musical interlude for you in the middle of this very long blog post:

Gotta take a Selfie!!

Our afternoon appointment was with Dr. Tychshen to prepare for our eye surgery the next day.  This appointment had a lot of waiting and after about 15 min in the waiting room our lil guy fell asleep on Mommy even though we were hoping to keep him awake.  He got about 15 min in and then they called us back, he was not so happy with this appointment and being woken up but eventually he did enough with the doctors for them to see what we have been seeing for so long.  We met with Dr. T's assistant first who did a ton of measurements, then Dr. T, then dilated, then he had to do an eye test with pictures to see what he could actually see, then another appt with the assistant and Dr. T.  We were the last people to leave the office at about 5:15 and every one of us was exhausted!

Check out my luxurious post bath robe!!

We went home and all went to bed early as we had to be at the hospital at 8:30 the next morning for surgery.  After waiting at the hospital until about 11:30 with a 3 year old who hadn't eaten (him telling us hungry, water, hungry every 5 min was heartbreaking) they finally took him back for surgery (we were initially scheduled for 10).  They were back in surgery for about an hour and a half and then we were finally able to see our little guy in recovery at about 1.  He had a tougher time waking up from the anesthesia this time I think due to the fact that they had an IV in his hand and he hates anything holding him down or on his hands.  I had to jump in bed with him and try to calm him down a bit until they finally just took the IV out.  They gave him a little Tylenol and he finally went back to sleep for about 30 min.  During that time Dr. T came in to tell us about the surgery and his findings.

And now I have surgery scrubs!!

Mickey was the ONLY way to distract him from that grumbling tummy!

Mommy cuddles after surgery!

So what did we find out???  Dr. T only had to do strabismus surgery on the left eye, he went in to cut the muscle and he said that it will take about 3 weeks for us to see a big difference as this will essentially "reboot" his brain.  He also did the measurements while Logan was under to figure out what was actually going on with his eyes, but between that and our evaluation on Monday he said he had figured him out and there were about 4 different things going on with his eyes:

1.  Strabismus - this was caused by the CP / PVL, there are optical nerves in the area of the brain that Logan has his PVL so this has caused him to have this strabismus where his eyes kind of wander.  There are a couple of different things that are associated to this...the wandering eye, the fact that for him to process what he sees takes a little longer due to the holes in his brain (you or I go from A to B to see, he has to go from A to E to C to D to B to get around the holes).  This also is what causes the eye rolling as it is him trying to process and clear out his vision as some of this is happening.  Dr. T was able to show us what Logan sees due to the strabismus and it basically looks like you are seeing through a prism at all times.  No wonder he has has some issues with his depth perception and vision.

2.  Malformed Pupil - We have always known he has had a little extra sliver of pupil in his left eye but the shape of the pupil wasn't formed properly as well which causes some issues. Right now there isn't much we can do about this but we will keep an eye on it.  This has nothing to do with the CP but I do think it has something to do with the vice he was in for so many months in utero.

3.  Eyelids - there is a very fancy name to this one but basically the reason his eyelids go up at times or go down at other times is that he has some back end wiring from his brain that didn't form properly so it sends the wrong signals to his eyes, so for instance when he looks down his right eyelid goes up making his eye look really big and if he looks up sometimes it goes down.  This is another thing that they said was not related to the CP but happens in the first trimester, I am not 100% sold on it and think this too was vice related but....There isn't much we can do at the moment this is another one where we just have to wait and see.

4.  Optical Nerves - During the surgery Dr. T did some measuring while Logan was sedated to see how his optical nerves were and it turns out he has 80% of the optical nerves you or I have.  This is due to the CP and the PVL and basically he explained it to us as if we see in HD he sees in a 1980's television.  It doesn't make his vision bad per se just he doesn't have the clarity that the rest of us see in, its just a little blurrier.  He did say tho that the 80% that he does have are very good.  So...that's a plus!

Another item on the plus side, I was wrong about one thing and Logie continues to prove that anything that has the smallest percentage of likelihood to happen will happen...he does not need glasses and his vision is actually great!  :)  Yay for one piece of good news and us not having to figure out how on earth we would ever keep glasses on this kid!!

Watching Mickey with Daddy back at the room!

After the surgery Logan was actually in pretty good spirits, you couldn't even tell they did anything to his eyes, they were as white as usual with a little extra tearing but that was about it.  We took it easy that night and again went to bed early so we could fly home.  Since being home he has been doing great, the eye doesn't seem to bother him at all and we think we are actually already seeing some progress.  We haven't noticed the eyes rolling as much and they seem to be tracking together better than before.  Hopefully within the next 3 weeks things will get even better.

We had a great Thanksgiving and a nice weekend of family time and hope you all did as well.  Sorry if this is TOO much information but when I start sometimes I can't stop!  :)  Thank you again for all the texts and calls and emails of support and for our prayer warriors once again helping us get through this.  We love you all very much!!