Thursday, July 26, 2007

First Video

I want to start making videos like this on a regular basis... to track Liam's progress. This video shows Liam's current skills. He was really tired so it underestimates him a little bit.. but actually this is SUCH an improvement, probably about 3 times better than what he could have done last Friday before we started the ProEFA and ProEPA.

Wednesday, July 25, 2007

Great news !!!

We just started Liam on ProEfa (2 daily) and ProEpa (1 daily). And OH. MY. GOD. IN. HEAVEN.
He is already showing huge gains of improvement. It is as if some enormous burden he was facing has been partially lifted. Some huge storm cloud is starting to move away..

Just in one afternoon he has said NEW words: quesadillas, helmet, present, money, rich.

More later !

Monday, July 16, 2007

Lorenzo's Oil

I was watching the movie, Lorenzo's oil this weekend, for the first time. Wow. What an amazing (true!) story. Very inspiring, and at the same time, it really got me wondering what is the cause of apraxia of speech ? What is the cause for Liam ?

Internet research tells me there can be many different causes of apraxia, genetics, brain injury, cerebral palsy, genetic syndrome.. but what is the common thread? Scientists don't know. Some think that it may be a very specific and small injury to a specific part of the brain. This injury could be caused by many different things and accounts for the varying degree of severity, and the presence of other issues (being that a person could incur this specific apraxia brain injury as well as other brain injury in other places causing other problems.) Other theories are that due to some problem with myelin in the brain the impulses are not able to travel.

The movie Lorenzo's Oil was very interesting to me because the treatment they were able to develop was made of Essential Fatty Acids. Essential Fatty Acids can also be helpful for children with apraxia, though it isn't known why. It is very much a parent to parent word of mouth kind of thing, nothing like, a doctor giving a script for it. And the book The Late Talker discusses how EFAs can help apraxic kids. But it is all very mysterious.

Lorenzo suffers from Adrenoleukodystrophy a rare disorder involving the breakdown of myelin in the brain. Before Lorenzo's parents learned all they could, pressured the medical community and came up with their own (somewhat succesful!) therapy, little to nothing was known and being done about this disease. It was just too rare. The interesting thing too, is that apraxia is a symptom of adrenoleukodystrophy.

I wonder if one day there will be a definitive answer on the cause of apraxia. I wonder too... if I am doing all I can for Liam.

Thursday, July 12, 2007

everything is all fine !

All the tests came back normal - HOORAY ! So now we are finished with doctor's appointments for a good while. I get so warn out of it. Today I drove 3 hours (1.5 there and 1.5 hours back) and spent like 10 minutes or less with the Doc. He really rushed. I was a bit peeved. But oh well ! So now I am just supposed to take him to have allergies checked and that is it. Dentist too, I guess, but other than that we should be good for the next year ! The neurologist wants a follow up in a year but I don't think we will. He was awful today, so I will just have him only go to the developmental pediatrician, if he thinks he needs to go back to neurology then fine but I think the dev ped can mangage.

Wednesday, July 11, 2007

Sometimes the internet is not your friend...

... like when you get a report from the doctor telling you that your child should be evaluated for "Landau-Kleffner syndrome" (though he notes it is unlikely but should be ruled out). And then you start wondering what that syndrome is exactly, so you go wondering off into the world wide web and find out and it starts freaking the fucc out of you and making your stomach hurt.

UGG. I do this to myself all the time. I don't know why I can't just let it rest, let the doctors do their job, I always gotta go research and read read read, and etc etc & get myself all worked up about it beforehand.

So Liam has an appointment tomorrow at the Doctor about an hour away. We will be going to the airport beforehand to send off Grandma (as Liam says "Ma-Da") and Grandpa ("Pa-Pa"). He should be giving some of his famous hugs and kisses. We had a great visit with them.. more on that later.
The doc is the follow up with the neurology. So we will hopefully get the results of the EEG. I was totally fine with that and expecting nothing but now I am freakin myself out a bit. I know it would be better to save the freakin out for when it is really called for. I guess I am getting better with it, this time it isn't as bad as it has been in the past. But I really really dislike this feeling.
So some of these answers will be there tomorrow, and some more we will have to wait.

Liam just started with his sign interpretter at school and he is doing well. Though his teacher is really stricht and only tells the kids the intruction once, sometimes Liam doesn't understand the first time, and of course sometimes he doesn't listen.. so it will be intersting to see if Liam can learn how to follow directions the first time... I hope he can.

Well, I should get off of this world wide web and wait and do the researching until later, like maybe after the docs say, yes he has this. It would really be doing myself a big favor.

Sorry if this all doesn't make sense.. it makese sense to me.
Well, a lil'.

Thursday, July 5, 2007

doctor appointments..

Today I had to take Liam for his yearly checkup with the developmental pediatrician. He didn't see the same Dr as last year.. so this doctor wasn't as in the know.. I suppose. He had a student with him. He did note to me and his student that fish oils Omega 3 and Omega 6 has proven to be beneficial in some recent medical studies. I stopped Liam on the fish oil to see how he would test on some blood testing addressing that without it, but he had that blood testing today so we will start back up. Need to buy some more also! Next pay day in 10 days I plan to order a bunch. For some reason the past few months or so we have been flat broke all the time. I don't know what it is .. but it is getting really frustrating! The next pay day it looks like we will finally be ahead.

Anyway, the doctor ordered a lead test and a genetic test for fragile x syndrome. I already knew a bit about both of these ailments/disorders. I don't think Liam will come up positive for either, but I am fine with thoroughness, as long as it isn't overkill or super invasive.

I did ask the doctor if he thought another possible causation for Liam to have all these issues could be that he has a mild cerebral palsy or another form of brain damage. He said he didn't think cerebral palsy likely because kids with cp have hypertonia and Liam has the opposite, hypotonia. He said some other form of brain damage could be possible, but that it wouldn't be much help to have an MRI. ( I am not sure what his reasoning is) And that in a year or so there will be some new form of super spiffy MRI that we might want to think about doing that new type of brain MRI at that point.

I speculate his reasoning may be that currently an MRI brain will be very hard to attain on a 4 year old being that you have to be perfectly still.. and it isn't really necessary because if it finds brain damage, that is good to know but it really won't change much for Liam, he will still need the exact same type of treatment that he currently is getting: lots of therapy targeting his specific deficits. The only thing that is likely with his symptoms is brain damage, and that means it won't get worse, and there isn't any treatment other than therapy that he is already getting. So I think maybe he thinks that if we were to do MRI now he would have to be sedated .. not really worth it if we don't really need to know if there is brain damage or not.. but, it would be nice to know. So if the technology improves and he can have MRI without sedation then it becomes worth it to see..
Well, he didn't say that but that is my guess. Suppose I should have gotten clarification, but for me, when dealing with doctors, I always think of the questions I really should have asked later on.
Liam was supposed to have another doctor appointment tomorrow but I decided to reschedule. Two days in a row driving so far to the doctor I just couldn't do it. Plus his blood work isn't done for that doctor, so better to wait anyway. After this appointment he may have one or two more with this same doctor and then hopefully doctor appointments should chill out for awhile. I hope. Well, that is about it. The grandparents are coming to visit this weekend until Wednesday, so I will be spending tomorrow cleaning and getting ready for guests.

Oh, also. Liam has started speaking more and more words now. He can say many single words with more consistency. I will write more about this and have wrote some other posts about this.. but I just thought about it, that he should really have a different term instead of mute now, because he is really speaking some real words now. I thought myself really clever because I thought up a term for him... "hard of speaking" It came to me reading a book about Deaf culture for sign class.. they talk about "hard of hearing" vs "deaf". So I thought, hey, Liam is more "hard of speaking" now than he is "mute".