A Few New Pictures

Not much to update, we're hanging in there! So far-so good this week. We saw GI, and overall a good visit but she wasn't happy that Lucas hasn't gained any weight, and on top of that has lost a pound. She actually brought up the dreaded NG tube again, she said she understood what a rough couple months he's had and because of that she's not going to do anything drastic. But he has one month to turn it around, she wants him to gain two pounds in a month. So I'm back to sleep feeding him before I go to bed, trying to squeeze in a few more ounces for the day. As feisty as he's getting, there is NO way I could put an NG tube down his throat every night to feed him while sleeping! We can't even keep oxygen on him anymore because it has become a hazard with him pulling it off and tangling in it. I can't imagine what he'd do with an NG tube. No, thank you. I'll wake up multiple times a night to feed him if I have to, to avoid that!

Here's a few pics from the last month, hard to believe from that smile that he's had three emergency surgeries in six weeks!

Trying on our new snappy coat and hat

How cute is this?
Lucas with his friend, Grant

My best friend, Tara, visited us a few weeks ago from Ohio

Grant is 11 months, Lucas is 20 months... and they are the same size!

We love this vest on him... He got it last year for Christmas but it still fits!

Choo Choo Charlie. I got these bibs because he looks just like a little engineer doll that my brother would never put down when we were kids (yes, I said my brother had a doll)

His favorite toy...anything with lights and music

Playing around Abby LOVES this little guy, she's so good with him Anna and Lucas
Nicholas & Lucas. The hands hardly ever leave the mouth these days All dressed up on Thanksgiving

Made It Through

Just a quick update to let everyone know we made it through the weekend... not without a trip to the hospital on Friday, but at least it was not for the shunt! Lucas was really "off" after this surgery on Tuesday, he didn't quite bounce back right away like last time. He was very cranky and his eyes were rolling around a lot, unable to focus, moving left to right (called nystagmus), and the right eye was still continually dropping. After leaving Dr. Yaun not-so-positive this time, it was really unsettling. We got through Thanksgiving, then on Friday morning he was cried a lot when I laid him down (which every time he's had pressure, he hates to lay on his back). So... we were off to the ER again, ehhh.

After the "shunt workup" of a CT scan and five xrays, they determined the shunt was working well, and that everything appeared smaller in the ventricle and the cyst that was giving him problems appeared to be draining. So, then they figured out he had an ear infection. Ahhhhhh, what a relief! That would explain the pain lying down, and could be contributing to the nystagmus. But he didn't have a fever and wasn't particularly messing with his ear... who knew? I have never been so happy to hear that, I could have skipped out of that hospital with my discharge paperwork. Actually, that was the first time in awhile that we got to leave and not be admitted. I had my bag of overnight clothes in the car and everything, convinced we were in for another one.

It took a couple days, but today he finally seems happy again. I just hope it stays this way and the shunt keeps working. I've said it so many times, he's such a well-mannered child and so happy... just imagine what he'll do if we can get rid of all the pressure once and for all! He's really never had a healthy CT scan, there has always been something not right. Maybe now we can finally move on, and also gain some weight. He has lost an entire pound in 6 weeks dealing with all of these surgeries. That's a lot when you're only 18 pounds to begin with. And babies aren't supposed to lose weight, he needs to be gaining quite a bit to catch up, not losing! I'm still paranoid about them wanting to put a G-tube in or NG feedings to make him gain weight, I've heard of other parents having to do this when their child is this old, as a final effort in helping their development. He sees the GI doctor tomorrow, hopefully she'll cut him some slack for the last month and give him some extra time to catch up. Today he finally ate well again, so I'm hopeful.

We had two more Anat Baniel therapy session today, she said she scan feel a big difference in his chest and he is showing some new mobility. So exciting. And he loves it, he talks non-stop during the sessions. I've never heard him babble quite as much as he does while he's getting this movement therapy. He made kind of breakthrough tonight, finally pulling his left arm in on his own and recognizing it there. He was chewing on his left thumb at the end of the session (which he never does). Carla is recommending constraint therapy for his brain to start recognizing his left arm, which is what we've been talking about anyway. He has a multitude of mobility issues, but his brain not recognizing the left arm as a tool that he can use really hinders learning to move through developmental phases like a typical baby. As I said before, I need to sit down and write to explain this a little more, which I will. We decided we are going to postpone his PT sessions from Early Intervention for a few months to give this method a chance. The problem is, they counter one-another and we could end up hindering his his progress with so much stretching and pushing from PT. PT exercises have unfortunately made him very rigid, causing many problems... but the Anat Baniel method (similar to Feldenkrais) is all about being fluid and learning movement in your core before you can ever move to the next step. We are basically starting over with him, but the promising thing is there are changes happening.

Oh yeah, one more thing... he finally has his top two teeth breaking through today! I thought he was going to be toothless forever! Everyone I know with much younger babies have 6-8 teeth. He has one and a half, and the larger one still isn't all the way in yet (and it started in May)! Hopefully these won't take as long to come all the way in. I think its going to be pretty cute.

Different Kind of Holiday

We're home now, we were discharged Wednesday afternoon. The surgery went well, but this time Dr. Yaun was a little less positive when we left than any other time, which is pretty unsettling. I can tell that she really doesn't know if it will work this time. She was able to go in and break up the membranes with the endoscope successfully, but that is no guarantee that the membranes won't still cause issues or grow back. What she did with the endoscope was actually the less invasive of the two methods. If this doesn't work and the membranes remain an issue, she will have to result to cutting a 2" diameter opening in the top of his skull, removing the bone, and going in to cut the membranes completely out of the ventricle. They replace the skull piece with screws and it will grow back together. Makes me nauseous just thinking about it.

When they do a shunt revision, they always do a CT at 4 am to check the placement and check for any issues. In the past the results have always come back with "thumbs up", but this time when she came in at 6 am to talk to us, she said she wasn't comfortable with what she saw. The catheter had moved from where she placed it in the middle and deep into the ventricle (directly into the pressured cyst that was causing trouble), and it had been pushed to the side against the wall of the ventricle. Of course, she doesn't want to operate again just to replace it until we confirm that it is failing. She said she's seen other kids have catheters in non-ideal places that have worked just fine, but nonetheless, it is in a bad spot and the odds are against us that it will drain properly.

So we're on high alert over the weekend. She initially wanted to keep us another day, which would have had us in the hospital on Thanksgiving, but she said she felt that we had a very good eye for the symptoms and felt comfortable letting us go home, with orders that we'd immediately return if he started getting sick. I'm so happy we aren't there today, I am SO over that hospital! We were supposed to travel to Alabama with all the kids for the holiday weekend. It was a tough call, but I insisted that Bran go on to AL with the kids and I would stay back with Lucas and hope for an uneventful weekend. Bran's family already sees so little of his kids, only about 1-2x a year. The kids have been talking about going for weeks, I just couldn't see disappointing them for this much anticipated trip to see all their aunts, uncles, cousins and grandmother. Not to mention, this is the first time in a few years that all of the Stishers were going to make it in for Thanksgiving.

Nothing right now is a clear-cut symptom, we just have to wait it out. Lucas' eye is still dropping, but that could be from the change/reduction of pressure, or air pockets that get in there from the movement of the endoscope. The air pockets are expected to dissipate in a few days. Last night Lucas threw up his dinner, which has me REALLY worried, but so far today he's kept everything down and his eye looks better today than yesterday. Remember the symptoms are... sunsetting eyes, throwing up, irritability, crying, and excessive sleep. Dr. Yaun said another reason she feels comfortable letting us return home is that Lucas typically shows the same pattern, giving us a few days warning on symptoms before he really bottoms out. She said some kids will start showing symptoms and go down very quickly, from seeming fine, to throwing up, to crying uncontrollably, to not being able to wake them up... all in a matter of 2-3 hours. That's pretty scary. I guess I'm glad we get a more subtle creep on going down that path.

Not exactly the Thanksgiving we had in mind, but if we stay out of the hospital this weekend I'll be ecstatic! That's all I care about right now. I'm grateful to my friends who have extended invitations to Lucas and I to let us crash their family dinners! Even though I've had a number of "its not fair" meltdowns the last couple days, I do have a lot to be thankful for this year... his incredible smile, for one! Happy Thanksgiving to everyone! Go hug your little ones.

PS, check out the songs I added to the sidebar last night, a few that are special to me for Lucas. I've been wanting to get these on here for a long time. The first one will melt your heart, "He's My Son"... I still can't listen to it without crying. Its so fitting to the year we've had. There are a few more I'm trying to add, but I haven't figured out how to get them all into one player.