28 February 2009

Still going strong with no vomiting! It's not natural for me to be able to pick him up shortly after eating and put him in his car seat with out the worry of throwing up. It's also weird to not have him sit in his high chair for an hour after eating in order to make sure all of his food stays down. It is kinda hard to get used to but I am loving this! He had a chubby belly on him tonight for his bath. I'd never seen his belly so big (well, sepsis doesn't count!).

25 February 2009


Liam's first dinner of bananas mixed with avocados. He loved the blend of the two but didn't care for the chunks- that's what this look is all about. He did pretty well with it though and ate the entire mix, chunks and all!

Liam's vomiting has been a daily occurrence for months and months, since around 5 mo. corrected. It has gotten so bad lately that the vomiting was numerous times a day. I never thought I would see the day that Liam outgrew his vomiting. I know that they outgrow it...my oldest daughter had the lovely projectile version and she eventually outgrew it. But I just couldn't envision a day without vomit.

There are not enough ways in which to voice my shock, delight, pure joy and excitement over the fact that Liam has been vomit free since last Friday!!! I truly can not get over the fact that I have had 4 full days of no vomit! WOW! I couldn't remember what it felt like to not have to change his clothes several times a day. The erythromycin has been a WONDER drug for us! I can't get over how easy it was to break the cycle! All Liam needed was a little help with his motility and that was what was causing the vomits. He is not only keeping everything he takes in down, he is able to take a bit more at each sitting. And he is no longer refluxing! Our OT saw Liam on Monday and she said it was the first time she had every done a session with him and she couldn't feel him refluxing! Crazy, huh?

Liam had a fabulous weekend. I think he feels so much better to be regular and to not feel so full all the time! You try eating a thanksgiving meal 3 times a day and see how it would make you feel. That's how Liam felt everyday. All of that food just sat in his tummy. I feel so bad knowing now that it was such a simple fix for him and wish we had done it a long time ago when I had told the Dr that I thought he had delayed emptying. Liam is doing so well on it that I don't even have to give him the whole dose that was recommended. He should get 3 doses of 1cc per day but I only have to give 2!

This weekend Liam did wonderful sitting at his bench (with support) and working very hard to get his head up and stable. I can see him getting stronger week by week. His OT hadn't seen him in 2 weeks and she couldn't believe how much he had changed. His trunk control was better as well and I think it has a lot to do with the fact that Liam loves to play airplane. We started playing it a couple of times a day and since Liam thinks it's funny, I get to work my legs while he works his back! Progress for the both of us!

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!

16 February 2009

I keep thinking of these lovely posts that will be so uplifting or thought provoking and I get humbled into reality by the sound of retching in the other room. I don't have any uplifting response lately to vomit. I hate it. I hate working so darn hard to get food in and it comes out in seconds. It's disgusting and if I never cleaned vomit again it would be too soon. But my plans have been way laid by this adorable little guy who likes to vomit and then grin from ear to ear. I don't even know how I would know he was sick with something serious because he throws up regularly every day! He's thrown up 3 times today! I have tried to slowly stretch his stomach by adding a few more ML to his bottle but he just won't keep it down. Can you imagine how much he would weigh if he kept all of his food inside??? I keep thinking he's on the road to bulimia/anorexia and he's wearing out his esophagus. He's going to eventually hate food cuz he gets to taste it twice.

And then I see this sweet little face, sucking on his thumb, and I can do another day like this all over again.

10 February 2009

My week didn't go as planned but really, what else in my life has really gone as planned? And I don't say that with any sarcasm at all (wink).

After planning another trip to VA to do 9 therapy sessions with our ABM therapist, we left after only one. Why is that? Because Liam has only been "sick" 3 times since we left the NICU almost 1 year ago and all three times have been when we are in VA!

I'll explain...Liam was having a great time on his car ride, cooing and giggling. We stopped at a freezing KFC near the NC/VA border where it took 30 minutes from the time I got in my line until my food arrived. The KFC was so cold that the dude cleaning the place was wearing a coat! But Liam was a trooper. I brought his high chair in (he can't sit up so a regular one doesn't work) and I strapped him in for dinner. He ate his freezing cold peas (our food was cold before we could finish it, it was really that cold in there) and we packed him up for the last leg of the trip.

After arriving at our hotel, Liam woke up and played for a bit before falling back asleep at around midnight. By 5 AM Liam was running a 101 fever. I couldn't believe it! Less than 6 hours in our hotel and he was sick! Come on, Lord! I am trying to give Liam opportunities to help his gross motor development and everytime I try Liam has to get sick?

I went ahead and took Liam to the 9 o'clock session and warned Carla that Liam was sick again. Liam seemed to do well with it even tho he was fighting off something and I anticipated coming back for our afternoon session. Liam had other things in mind and decided that he would up the ante and get his fever higher than he ever has before (103) and since he couldn't relax and fall asleep he was wearing himself out. I cancelled the afternoon session and decided to wait it out and see how Liam did through the night.

Liam didn't get any better and continued to suffer from a high fever even while on tylenol. After staying awake with Liam off and on through the night I decided that I wasn't going to waste the money on therapy when Liam clearly didn't feel up to it. And I wanted to be closer to my Dr because he'd never had a fever that high. It's hard to take care of a sick baby when you're not in your own home.

So, after waking my mom and my girls and repacking the suburban, we got on the road by 7 Am and headed back home to NC. All that day, I kept Liam off Tylenol and he was running about 99. By that evening, while we were comfy in our own home, Liam got better and better and woke up the next day as his normal happy self.

What do you all think? I stay in the same hotel each time I've gone and Liam was not sick on any of the three previous trips before we arrived. Yet shortly after arriving he is running a fever. Is it the hotel air? Liam not traveling well? Or a sign from God? What am I missing? This is so strange!

06 February 2009


Please- read this article. It is so disturbing in so many ways and I can't begin to comment on all of it right now. My son is a surviving 23 weeker. And what I think disturbs me the most is that "both" sides of the debate are aghast at the behavior. I can't understand why the left is "aghast"! Instead of killing the baby by tearing it from the womb and dismembering it, this baby died from it's early birth. Did it die a less than heroic death because it wasn't dismembered? That's the lefts view?? I don't understand society anymore...


And I don't mind a healthy debate but look at this situation from a clear, open mind. How on earth is a child killed by being thrown away any less humane than being dismemebered? They are the same thing.

04 February 2009

Ahhh- Liam has had such a good week. And it's only Wednesday! I was so proud to show him off to Cathy yesterday morning because she hadn't seen him lifting his body off the floor. She loved it- as I knew she would, because she just introduced this skill to him! I counted this morning while he held his head up and arms straight off the floor and it was for over a minute! Thats really amazing because he couldn't do that even two weeks ago. I can't tell you how happy I am!

We saw the neurologist yesterday and the appointment went well. Dr. B said that Liam looked really good, will continue to have problems for a bit with head control and that she won't assign a name to his version of CP for a long time because there's no reason to, not sure yet what he has and because it won't make a difference anyway. For anyone who isn't aware, CP (cerebal palsy) is a broad term for the inability for the brain to properly talk to the muscles. There are several types of CP and they all range from mild to severe.

We are headed to VA tomorrow and will be visting with our ABM therapist. I have mentally commited to two more trips and will reevaluate the therapy after that. Please pray with me that we will be able to see differences in Liam after doing the 9 therapies this weekend. I have wondered if Liam is too young to benefit from it but since he is now pushing up off the floor I am hoping we can help him make some new muscle/brain connections and get him on a learning curve!