19 February 2009

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!


Only the Sheppards said...

I know what you mean about the milestones... Every time we go to the Ped they say, we're sorry, but we have to ask... Is he ??? yet? No, no, no, no, and no. They know he's not! Why even ask?

As far as the weight... Hang in there. He'll probably grow out of it all soon. On the flip side, however, I can say to not fear the g-tube. I was very against one at first, but it's been a life saver for us! Dax eats baby food orally all day, but we do continuous g-tube feeds at night... which leads to decreased reflux, decreased oral aversion, improved caloric intake, and decreased burning of calories so that more can go towards growing. I hope that Liam doesn't have to get one, but if he does, it's not the worst thing... I'm actually very thankful for ours!

At any rate, sorry today was such a hard day.. We'll say a little prayer tonight that tomorrow is better!

Anonymous said...

Just read this post and have to say that my reaction to NICU follow-ups is the same-on our year visit I checked no to everything-and while they sat and tested my son while he cried and fussed, I thought-this is pointless-I already know what they are going to say, we are already getting help-really it is just more stress for him. Why am I even here?

I know there are reasons for the follow up, but seriously have thought about not going to the 18 month one. Do not be discouraged-our little men are just doing their own thing-they are perfectly on pace for themselves and don't know any different-who are we to say they are not? As long as they are happy we are happy, and of course when they are not feeling so well, neither are we :) I have been reading your blog and have found it very inspiring. Liam is such an adorable little man. That smile is infectious. I will continue to pray for him, as I have every day since I began to read. Take Care and best wishes.