babies babies babies

We are babysitting our friends' baby Cooper while his parents go out for an anniversary date.

Liam enjoys playing with the baby. He sat down on the floor with Cooper and pointed to his feet and said "feet' then to his knees and said "knees". He went on like this and said "shoulders, belly, ears, eyes, nose, head," If I didn't hear him or couldn't understand him he came over to me and whispered it in my ear. Made me melt.

Liam is hands down, the sweetest little boy in the whole world. He is so gentle, not only with babies, but with everyone, he is so loving, and gives hugs and kisses to almost everyone he meets.

Liam also signed to me.. asking MOM, BABY?
"Oh you want mommy to have a baby?" "YESH!" Liam exclaimed. "Maybe in a few more years, Liam."

Having kids is being introduced to love, a new amazing kind of love, for the first time.

So many of my friends are having babies now, first babies. I have been thinking so much of how much their lives will change, in all the bad ways, and not thinking much of how their lives will change, in all the good ways. Now I am being reminded. All the sleepless nights, not being able to just take a shower, having to get a babysitter to go out with your spouse, suffering through embarassing public fits...(just to name a few of the downsides) it is all worth it, times a million.

Some little things I want to remember..

This week as we were driving over to my friend Rachel's house to visit her new baby, Soren, Liam looked out over the edge of the Black River, through the trees on the street we live. He brought my attention to the setting sun. And signed SUN, GO HOME.
"Yes, Liam, the sun is going home." I said. Goodnight Sun, we said, me in my way, and Liam in his.

We got to Rachel and Soren's house. And oh yeah, Bert's house too. Well, we arrived at the family house and Liam just wanted to hold the baby first thing. And Rachel let him, just being Rachel, that's how she is. She's a good mom already I can see. Liam held the baby, and kissed his forehead. After a bit, Soren wanted Mom but Liam didn't want to give him up. He just wanted to hold that baby forever I think.

A while later we went outside. Liam begged to hold the baby again, so again he did. This time Soren didn't cry so Liam held him a good while. Liam gave Soren two soft kisses on his forehead. And one slobbery kiss on the forehead. Soren liked it though. I asked Liam, "What is this baby's name?" "Soren" he spoke. Rachel and I smiled.

Later on, in the house. Rachel commented to me. She said something like, 'It's amazing how creative he is with language. It is amazing how he uses the words he has to send his message, like how he said the sun is going home, instead of the sun is setting' We don't know the sign for setting, and he has never spoken the word 'setting'.

I agree with her. I want to remember everything he says. He is amazing.

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.

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 !

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.

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.

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'.