No sleep for the weary.

Time sure seems to have gotten away from me these days! I haven't been online like I used to. We haven't been too terribly busy but my priorities have shifted a bit and since I normally blog late at night or early in the morning....I haven't blogged much.

I am trying to spend more time with my kids late in the evenings. Aidan and I love to play Nancy Drew and we are trying to finish up one of those games right now. I can only play late when Liam has gone to bed. I also enjoy working in my yard and have been spending a lot of time working on a large patch of landscaping that our former owner didn't take good care of. Shawn hangs out with Liam while I go outside (covered from head to toe to keep the mosquitoes away) and spend some quality time alone, weeding and thinking.

I only get 5 hours of sleep a night and my 34 year old body is pooped. No really, I am worn out. So, I haven't been staying up late to blog as much or even spend time online. I can barely stay awake past 9:30 and then I'm up at 11:30 to feed Liam his dream bottle.

Liam is doing good. He's getting crafty and knows that if he bites the spoon, it can't go in his mouth. But he is doing a lot better at taking the food off the spoon now! Which is a big deal because he just started that with our new OT 3 sessions ago. He is doing well with his oral stim with her- he likes it and he is gagging much, much less. We work on his cheeks, lips and inside his mouth. I repeat all of the things she does right before he eats.

I have to load some videos on here of Liam laughing. As I said in my previous post, he does a lot of it. He now has this new laugh reserved only for his Baby Einstein DVD. It is hilarious. He has a lot of the video memorized and starts laughing BEFORE his favorite scenes come on! But he has one scene that has become his new favorite and he breaks out in the cutest laugh, different from all the rest.

Liam had a weight check this week and he has gained 1 1/2 pounds in the last month! That's an incredible gain for him. He's now 19.2 lbs. What has made a HUGE difference for him is the increase in his reflux meds (he gets another dose at night now) and putting him back on erythromycin to help him empty his stomach quicker. For the first time EVER, Liam has been able to get almost 5 ounces at a time in his tummy. Three months ago he started throwing up when he approached 3 ounces...so that shows what a huge difference the medication has made for him.

His weight gain is surely due to the meds and also to a little trick (or not so tricky, more like a tool) that I learned when Liam was sick last time.

Liam was sick with a high fever and he was dehydrated. He tried to gobble down his bottle but was tired and with his poor suck, he wasn't getting anywhere. I knew he was thirsty and that he needed to get the milk in, so I went and got a syringe to feed him that way. He loved it and took 5 ounces the first time I did it. The little light bulb went off for me and I knew that when Liam got tired of sucking on the bottle, I could syringe feed him the rest. That way he could get the nutrition and wouldn't be forced to take the bottle ofter he was done with it. And that is what I have done for the last month. He doesn't mind it at all (for now) and it has helped him tremendously in the weight department.

It is only at the 11:30 feeding that I sit and think of how nice it would be to have a g-tube so I could get a good nights sleep. But for now, I will continue on, aging quickly and putting my health at risk according to the newest study in order for Liam to get enough nutrition. He needs it.

So, I'm going to have to fit blogging in at an earlier time. I've missed it.

I got the paperwork in the mail today for Liam's one year NICU follow up evaluation. I had already made up my mind that I wasn't going to go to it, but I had to call and tell them that. They don't call you to set up the appointment- they just make one for you automatically.

I called and cancelled and the lady asked me when I wanted to reschedule. I told her that I wasn't and she wanted to know why. I explained to her that we are already receiving all of the services that we can and there isn't anything at this clinic that they could tell me that I wouldn't already know or have taken care of. I told her that when your son gets diagnosed at 4 months old with cerebral palsy, you kinda know things aren't going to go as planned and that we already have Liam doing everything possible. Then she said what I feared. She was going to tell the Dr that I wasn't coming. I asked her not to do that because I know Dr B and she isn't going to take it lightly that I cancelled. And she told me she had to do it because Dr B specifically wanted it set up with her at the appointment. And she told me to tell her when she calls exactly what I told her. I'm not good with guilt trips so I am hoping she doesn't lay it on too thick. But it really takes a lot out of my day to drive over an hour away and spend 3-5 hours at a follow up clinc that will tell me my son is developmentally behind in every category.

I did get emotional when I looked at the questionaire. I never look at the developmental milestones Liam is missing because it does no good to dwell on what isn't going on. He does his best and we enjoy what he does do. So I just delete my emails that come once a week that say "What your 11 mo 2 week old is doing" etc.. and never look at them. But this questionaire was staring me in the face so I flipped through it (knowing I shouldn't) and it upset me. Questions like, "Does your child cruise the furniture", "Does your child say one word other than mama or dada", Does your child bend over to pick up a toy from standing", "does your child point to things they want". Liam can't do any of that yet. I know he will in time, but throwing the obvious in my face made me a bit sad.

Liam had his monthly check up today and he lost weight!! I wasn't surprised but yet I was at the same time. Ya know what I mean? He has vomited a lot lately but I have been putting calorie booster, butter and brown sugar in his jars of baby food to boost his intake up and yet he still lost 5 ounces. He is using more muscles now than last month but I really think it is all the vomiting. I told my ped. that I wanted to see a GI Dr and he wanted to try Liam on Erythromycin first and see if we can get him to empty his bowels quicker allowing him to reflux less because less would be sitting in his tummy. If it works it will be a life saver! Literally! But get this- They don't make much of the Erythromycin anymore! When I went to Wal-Mart to fill the script they paged me over the intercom and when I went back there they told me that their bottle of it expired over a year ago!!! Can you believe that?? At least they caught it! They said I would have to try local pharmacies because their distributor doesn't ship them that anymore. I checked a local and they had it but it was in a different suspension than the one the script called for. After doing some reconfiguring the Doc got it all set up and had me on my way. But he said the same thing- that they don't use it much anymore. Well, I hope it works out because I have the fear of the g-tube always looking in the back of my mind and I really don't want to end up there.

Would you believe that Liam is still able to sleep in a bassinet?? I have just now started moving him out of it because he is started to move around too much while he sleeps. He is now in his crib (at almost 1 year adjusted) and a bit ago he had moved from the center in the 6 oo'clock position to the 8'oclock position and had his feet out the side of the crib. It was quite funny to me because it is VERY new to have him moving like that!