Unexplained

For a kiddo who only sees his pediatrician at his well checkup, seeing her 3 times in February was unprecedented. When Liam's fourth time running a fever hit I took him in right away. I was scared with his immune system still recovering from all the antibiotics he was on, he was potentially now getting sick with the flu.

Nope. No flu. Thank God! But no answers either. I did ask her to do a blood panel so we could check for any hidden sinister signs of trouble. It looked great! Whew!

I asked about all the 2 am questions that came to my panicked mind when I was trying to comfort Liam. Do you think it's his metal plates on his femurs causing rejection? UTI? Kidney infection? Recurring fever syndrome? Something more sinister? She doesn't believe any of those are reasons for his fevers and actually felt it was due to his constipation. Which he's had since his first round of antibiotics. Which is contrary to what a typical person gets while on antibiotics. Leave it to Liam for his body to respond opposite of what normally happens.

She said you see it a lot in the elderly but that brain injured kids can suffer from it too. That was news to me. We have suffered from some pretty difficult bouts of constipation and never experienced fevers before. But if that's what is causing it, I'll take it. It's an easy enough fix. 

We have had a variety of problems this month messing with his health and if we can get him working right again and there are no more fevers we are good to go. If we still have fevers and no constipation, then we will start digging deeper to the problem. But it's one of those issues where the Dr doesn't really know where to start so you just pick somewhere and go with it.

We helped him out yesterday and I am pushing lots of water. And Liam still woke up screaming at 2:30, completely inconsolable.

I'm telling you, the worst mom feeling ever is not knowing what is going on with your child. Throw in special needs and being non verbal and you feel utterly useless. Sitting by watching your kid scream in pain and frustration with no ability to alleviate their problem is the most humbling of experiences.

Swine flu; look at you.

After hearing all of the fear and hype over the swine flu, it has put the fear of God into most people these days. No one wants to get it. People are afraid. I've been worried. The CDC is saying how it is affecting little ones worse than the usual flu, especially the compromised kids. People are antsy, waiting to get the H1N1 vaccine when it finally becomes available and worried at the same time on whether they should considering it is so new.

But, this sucker is traveling quickly and spreading like wild fire. And guess who gets it?

Uh huh, Liam.

So what does the dreaded swine flu look like?

Well, for us, it's a baby who is happy as long as his fever is down.

It's a little boy who is smiley and playful and still eating just like normal.

This isn't the dreaded swine flu I was warned about. While it may be horrible for some, my immune compromised, lung damaged, GERD, CP, little boy is handling it like a champ!

We actually would have had no idea he had it.

Rylie was sick a bit last week, just feeling down and running a fever off and on. Nothing major except for being really tired, worn out almost.

This week, Liam was running a low grade fever for two days. Because he was feeling fine, I never checked it, I just could tell he had one. The third day into the fever he woke up with a 102 degree one and I treated it with Motrin. On day four, his entire mouth was covered in huge splotches of white. That was a new one. After 4 kids, I had never seen that. So, I took him in to see Dr. Kid. Dr Kid took one look at his mouth, said he had Thrush and then said let's check him for the flu.

The results came back positive, of course, and I was a bit shocked. She put him on Tamiflu to treat it. I asked her if it was the swine flu since Liam has already had his flu shot for the year. She said yes, that it was traveling quickly and he was 'highly contagious' but that luckily the flu was very mild.

Mild indeed.

This was Liam a few hours ago due to a 100 degree fever. He just gets so cranky when he is running a fever. What's weird is that he gets a fever every now and then but it never progresses into anything and he never has any other symptoms. I guess I should be thankful...





Cuz this is how he was feeling just a few minutes ago.

Why yes, that is a pom pom on his head.

We had out first minor fiasco with his glasses this week. Ian went to pick up Liam out of his crib and noticed that his lens was missing on the left side. The frame was also popped apart and the screw was missing. We looked all over for it and couldn't find either one. I finally found them both under the blanket he had been laying on. I couldn't believe the screw was right there with it considering how itty bitty they are.

We got them all fixed up and that was that.

But the next day, when I was feeding Liam, his lens popped out again. I missed it happening so I don't know how he did it but I found the lens and the screw was gone. Because it was a holiday weekend the optometrist was closed and we couldn't find a repair kit at Wal-mart so Liam went for two days with no glasses. It was kind of interesting because it seemed to me like he was trying harder to focus and it made his esotropia a little less noticable. At least it wasn't a major issue because we only get one free repair on these.


And I'm still waiting to hear back from someone about getting his GI appointment. Sheez, you'd think we already had universal healthcare or lived in Canada or something!

Liam is back to being the little cranky pants in the first picture, so I better go get the Tylenol.

We haven't been back to Virginia for Liam's ABM therapy sessions since December. We did attempt a go at a full weekend of sessions in January but Liam came down with a wicked fever within hours of getting there and we only did one session before I decided I needed to get back home with him. I knew he wouldn't get much out of the session when he was so uncomfortable and in case he was really sick I wanted to be near our Dr.

Of all the times that Liam has been sick with a high fever (only 3) was when we were in Virginia (all 3 times). So, you can imagine my trepidation as we embark this week on another trip to Virginia!

I have to go again (therapist's policy requires me to reschedule our canceled sessions or be billed for them) but I am a bit nervous about the trip. I am looking forward to going though. I am curious how Liam will do with the trip, how he will do with the therapy and... I get to go shopping!

I know Liam has changed quite a bit since we were last there so it will be exciting to see if he responds and makes any new changes. I am making sure the hotel is thoroughly sprayed down with Lysol when I get there and I plan on turning on the air to circulate the germs through a window for a bit before I actually allow Liam in.

Liam is such a good kid but when he gets to feeling bad he can be a bear! He is so difficult and he resorts to horrible posturing. Liam actually isn't feeling well today so I am hoping he is getting it out of his system before we go! We tried to go to our BFG (bible fellowship group) get together today and we didn't even last an hour. He cried the entire time and wouldn't comply with anything I tried to get him to do.

It might have been the heat that was getting to him because when we got in the car and turned on the air he seemed to feel so much better. And I think Liam is getting tired of being carried for long periods of time. Granted, he didn't feel well yesterday either, but he made a huge fit in Wal-mart and he didn't care at all for his new Ergo carrier. And since we were in the back yard of someone's house today and he was pitching a fit, my only options were to try to carry him and console him in my arms. And I think he has just had enough. He likes life better when he is stretched out on the floor.

Liam is really doing pretty good now with his side lying skills. He is much looser than when Carla first started ABM with Liam and even though Liam still isn't getting his head up and under control he is getting stronger with everything! So, I am looking forward to our trip and keeping my prayers going for a weekend in Virginia with no sickness! It would be the first time!

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!