Trip to St. Louis!!

Well, we finally got our chromosomal testing done...but it will probably take at LEAST a month to get anything back.  So, we will either figure something out or not.  The doctor told us since the beginning of 2010, theres been at least 150 new disorders detected just simply due to the increase in technology...so even if nothing is found this time, in even a few years the same test could find something....AND because of all the new technology, it wouldn't be unheard of for Liam to have the first ever chromosomal disorder ever detected.
Obviously I hope they find something, and I hope it is something that other people have so we could know what to expect, but if he happens to be the first person to have something he could probably do clinical trials, so that would be kind of good, too.  (They didn't say they thought he would be the first, just that it's not unheard of!)


We didn't really find out new information this trip, but we did talk about a lot of things.  I think all the learning will come after we get tests back, and we are putting a lot of hope into finding something with the testing.  Even if they find some rare abnormality, I think I'd at least feel better that there WAS something and feel less like if I just  would work with him better  or more he'd be fine.  I guess at least I wouldn't wonder if I was doing something wrong or if there was something I could do better.


They are still talking about using a feeding tube, and I'm still quite reluctant.  Even though he isn't growing, I wonder how much of it could be due to his "unknown diagnosis", and invasive surgery just seems a little premature right now.  Not to mention, I was pretty tiny as a kid myself.  (matt, however was a monster!!!!)  I kind of talked the doctor into going to a feeding clinic before considering the tube so he could be evaluated by a speech/language pathologist, an occupational therapist, and a psychologist to rule out any other thing that could be done before resorting to surgery.  If it was anyone else's kid, I'd probably think the mother was nuts for not wanting to do whatever she could to get her child to gain weight, but I just really am not sure he needs it yet and want to rule out anything else.  I will definitely NOT consider it until we at least get his growth hormone checked in July...because that could explain a lot and then he'd just need to be given growth hormones.
I'm not really sure how the feeding clinic works, if it is just a day or a few days...but the neuro is going to be calling to get us an appointment and will find out soon.  If he does get a g tube though (I am more open minded to it after talking to him this time, but not sold on the idea) He'd be in the hospital at least a week!!  That just seems mean to do to him...


We will also be going to see someone about his feet, as he has really severe out toeing and over pronation (he steps only with the inside of his foot) and it is affecting how he walks.  He can't grip the ground with his feet, so he doesn't really get anywhere in his walker unless he uses both feet to push off at once, instead of the normal walking pattern.  Both the out toeing and over-pronation are pretty common and is usually just left alone, but his is pretty significant.  I've looked into some medical journals since I have access to them from school and it seems like braces and special shoes don't do much to help, and that surgery is often needed....I hope not though!  It generally involves cutting whichever leg bone is twisted and putting it into it's right spot.  However, that's just my own research, so who knows how accurate that is!!


The doctor is also scheduling a new MRI, mostly to compare it to the one we had a year ago.  Before, he had delayed myelination (not to go into too much neurology, but basically it makes your brain work faster, and isn't fully developed until you are into your 20s, but there are expected stages for it to be at.  Most kids with epilepsy do have delayed myelination, and although it's not preferred to have it, most kids with developmental delays and/or epilepsy do as well as autism, and pretty much anything else).  We will also be doing a new EEG to compare again, and to see if maybe he is having any seizures we aren't noticing.  Both of these tests are common to have repeated, so it doesn't really mean anything other than comparing where he was then to now.


We also upped his seizure medicine again since he has shown so much improvement since the last time we upped it.  We aren't really sure if he is having undetected seizures or not, but the dr. said even one seizure is too many.  He also said he thinks Liam has more potential than he is giving right now, so the upping the dose is mostly to eliminate any undetected seizures and see if he improves more.  This new dose will put him at the top of his dosing chart, but if it seems to be too much we can back off of it.  Theres really no danger to over-dosing on this med, so I don't mind.


We spent the day at the zoo before with his cousin Trevor, and although Liam was grumpy in the beginning, I think he really enjoyed being pushed around by Trevor in the stroller!  His favorite part was definitely the train!!  We didn't get to spend as much time there as I had hoped, due to my procrastination on homework, so hopefully next time we can really make it a whole day trip.


I can't think of anything else right now to update anyone on, but I am sure I will think of something later on.  In about a month, be sure to check on here to see if we found anything out about the chromosomal testing results!