I’ve Been a Bad Blogger October 31, 2007
I know. I suck. Things have just been a little crazy around here, that’s all.
Mostly it’s been the nonstop poop-a-thon that’s been keeping me busy. Yeah, I normally don’t blog about poop, because well, it’s poop. It’s not like I haven’t had the material with all of the food intolerance stuff, but it’s just not that great of a blog topic. However, the day after Adam’s MRI things went downhill in the poop department in a bad way. He’s averaging 7-10 times a day. Every day. And it’s green. Yeah, not good.
It really sucks, because he had been doing so well in the GI department lately until this. We were even going to attempt solids again. Now that’s obviously going to have to wait until he recovers from whatever is going on right now.
He had his rescheduled 9 month check up on the 19th, and that was my first order of business with the doctor. The pediatrician said he looked fine and that it was probably a virus that could last up to 3 weeks. If he wasn’t better at the 3 week mark, bring him back. Well, it looks like we’ll be heading back to the doctor on Friday unless a miracle occurs between now and then.
The good news from his check up was that the ped said not to worry about the Diabetes insipidus marker, because he would be showing symptoms if he had it. Babies with DI are failure to thrive babies, and Adam definitely doesn’t fit that bill at 29″ tall and 20 lbs, 7 oz. So, that’s a relief.
We’ve had some really good news on the helmet front, too. A week ago Adam had another head scan done. His asymmetry measurement went from 11.9mm at the previous scan (and from 16.5mm at the beginning) to 7.4mm! What a difference going to the second helmet has made. We’ve seen the same amount of correction in the first 3 weeks he’s worn the second one as the entire 8 weeks he wore the first one. His next head scan is scheduled for 3 weeks from today, and then he should be done. It will be so nice to be all finished by the holidays.
His crazy eye is still crazy. I talked to his ophthalmologist shortly after his MRI was done, and we went over the possible causes/types of nystagmus now that a tumor has been ruled out:
1) Spasmus nutans. This is the benign form that will resolve on its own usually around the age of 3-4. There are no vision problems or other major effects from this type, although some kids will develop a head bob in response to the nystagmus.
2) Congenital motor nystagmus. This one usually doesn’t result in major vision problems either, but it doesn’t go away. It’s just something that will stay for life. Some kids will develop a strange head position in response to it that can be corrected surgically (the postion, not the nystagmus).
2) Retinal problems. There are several types that could fall under this category, and this is where the major vision problems occur. Obviously we hope he doesn’t have this kind.
The ERT test can be done to help rule out retinal problems, but there’s only one place that does it in Houston and the anesthesia that’s used there isn’t great for babies. Since there’s no treatment for it anyway, it doesn’t make sense to put him through that right now.
Once he’s 2 or 3 years old he’ll be able to have a sit lamp exam done by the eye doctor which will give us a lot more info on his vision and on what the retinas, optic nerves, etc look like. The ped ophthalmologist wants to see us back in 3-4 months, but we’re basically taking a wait and see approach as long as he doesn’t develop any new problems.
The sleep issues continue now with added fun from the poop-a-thon. The fact that he seems to be one of the slowest teethers in history doesn’t help either. Tooth #4 is taking its dear sweet time coming in, and it’s driving Adam crazy. The helmet doesn’t help matters either. I have to laugh (it’s either that or cry) when I hear people complaining about their child waking up once or twice overnight. Adam woke up 6 times last night. Yeah, I’m a zombie.
So, I guess that’s the long and the short of it these days. Adam is a crawling fool and doesn’t like to stay in one spot for long. It’s so fun to watch him develop new skills. He’s big into pulling up now, too.
Now if we could just get what ever is going on with his tummy under control and have this tooth come in we’d be in pretty good shape. Oh, and more than a couple of consecutive hours of sleep every now and then couldn’t hurt either.
Sometimes It’s Good to be Unremarkable October 15, 2007
We got Adam’s MRI results a little while ago. I happen to think he’s a pretty remarkable little guy, but according to the report he has an unremarkable brain. His eyes appeared normal as well. I am so incredibly thankful to be able to exhale.
Of course it wouldn’t be us if the report ended there. Apparently he has a “lack of normal T1 shortening in the posterior pituitary gland” which can be a marker for a disease called Diabetes insipidus, not to be confused with Diabetes mellitus, the blood sugar one. I haven’t had the chance to consult Dr. Google much yet, but it has to do with the kidneys inability to concentrate urine. Obviously we have a lot more questions than answers right now about this, and we don’t even know what the chances of him having it are. Adam has his rescheduled 9 month checkup on Friday, so I’ll definitely be discussing it with his pediatrician.
We’re so relieved to know that there’s not a tumor causing Adam’s nystagmus. We’re waiting to find out when the pediatric ophthalmologist wants to see us back so we can figure out where to go from here, but it’s just such great news to cross off tumor from the list of possibilities.
Now if Adam could just recover from the post MRI effects. He’s either having a reaction to something they gave him on Friday or he managed to pick up a virus while at the hospital. Either way, he’s been having a rough go of things, and we’re going through diapers like you wouldn’t believe. Hopefully whatever this is runs its course soon so he can get back to feeling better again.
MRI Mission Complete October 12, 2007
I haven’t been sleeping much lately, but last night I barely slept at all. Adam was up a bunch, which for once I considered a good thing because I wanted to get as much breastmilk into him as I could before the cut off. Plus, I was just too nervous to sleep.
As it turns out, we all survived this morning’s MRI in one piece. Adam did really well. He really is such a trooper. I think the worst part was the IV. He did not like that one bit, and it hurt my heart to watch him hurt. He didn’t really enjoy not being able to eat for that length of time either, but he hung in there.
They ended up having to use general anesthesia on him since one of the drugs they use for IV sedation is egg protein based and we didn’t want to chance it. We weren’t allowed in with him during the actual MRI, but we were there while he went to sleep. Walking away from him at that point was so hard. We made our way to the waiting room, and I couldn’t help but let the tears roll down my face.
We were told the MRI would take 45 minutes to an hour, and I was ok until the hour mark arrived and still no Adam. My knee started bouncing, and the nerves started flowing. By an hour and 15 minutes in I was up pacing the waiting room. Thankfully they called us back shortly thereafter, and we arrived in the recovery room right as he was starting to wake up.
I’m so glad he got to see my face both as he went to sleep and as he woke up. I was afraid he would have been scared otherwise. He was able to nurse right after he woke up, and we were able to leave shortly thereafter.
We’ll have to wait the weekend to find out the results, but we should get them by Tuesday at the latest. I’m very relieved that the MRI itself is over. Now we just have to wait and see if the results are normal. Oh, I’m hoping so much that they are.
Thank you so much for all of your good thoughts and crossed fingers. They really mean so much.
9 Months and a Request October 11, 2007
Adam turned 9 months yesterday. He’s growing up so fast, and he’s just a bit of a cutie, if I say so myself.
There’s not going to be much of a 9 month update today, because there’s something else on my mind right now. That’s where the request part of the post comes in. I’m not sure if I’ve ever asked this before on my blog, not through the IVFs or anything, but this is different.
I’ve been going crazy just sitting here waiting for his MRI which was scheduled for a long 6 weeks away, so I called this afternoon to check on the status of the cancellation list. Amazingly an opening for tomorrow morning had just come up, so I snagged it.
His MRI is scheduled for 8:30 am, and we have to be there by 7:00. He’s not supposed to eat for 4 hours before that because he’ll have to be sedated for the MRI, so that should be interesting especially given how often he’s been waking up to nurse lately.
So, if you could spare a minute tomorrow to send a good thought our way we would really appreciate it. I am so nervous. I don’t think we’ll get the results tomorrow. We’ll have to wait and get those from the doctor sometime next week, but I’m so thankful that we don’t have to wait another 6 weeks to find out if he’s got a tumor hanging out in there.
Please keep your fingers crossed that our little guy is ok.
Just a Tad Bit Overwhelmed October 5, 2007
I wish I could say that things were improving in issues-land, but that’s not the case. Adam had his appointment with the pediatric ophthalmologist on Monday. Unfortunately we didn’t learn a whole lot that we didn’t already know. She discussed the various causes of nystagmus with us, all of which we were familiar with.
The one new piece of info came after the doctor looked at his eyes through her microscope lenses. She was able to tell us that his eyes are actually doing it constantly but only so often do they do it predominantly enough for us to see it. She confirmed that his left eye is more affected.
The next step is for Adam to have an MRI done to rule out a brain tumor. The wait for an MRI appointment is not a short one and the fact that Adam will need to be sedated for it requiring an anesthesiologist be present the entire time just makes it even harder to schedule. His appointment is scheduled for 11/23, the day after Thanksgiving. It was either that or wait for the next opening on 12/18. He is on the cancellation list, however, so there’s a chance we could get in sooner.
It’s really not easy just to sit here and wait. I worry a lot. I know that realistically speaking there’s probably a greater chance that’s he’s ok than not. But the fact that there’s a chance at all that my little man could have a brain tumor is just excruciatingly hard to deal with.
Adam also got his new helmet yesterday. Oh, how I loathe the helmet. I already had to take him back to have it adjusted today since it wasn’t fitting well. This feels like a repeat of helmet #1 already, and I’m not a happy camper. He actually ended up getting a week break from the helmet while the new one was being made since the old one fit so poorly that he couldn’t wear it. It was sooooo nice to have his little head back, and it made it that much harder to put him in the new one. I didn’t cry when he first got the helmet, but I sure did when he got #2.
Adam’s having a really hard time with his sleep now, too, and it makes me worry along with everything else. He’s waking up every 2-2.5 hours at night, and it’s taking it’s toll on him and me. I just wish I knew what was going on.
I don’t even know where to start about the food sensitivity issues. I keep losing foods out of my diet, but at least we’re making progress. I do get discouraged with the very limited number of things I can eat. It’s a very hard thing to keep up month after month, but really, what choice do I have? I need to do this for him.
Oh, and for good measure I burned the crap out of my arm this week with a hot pan. It’s a fairly large second degree burn, and it’s pretty nasty. I think I was just too tired to realize that my arm was touching a hot pan to pull it off in time.
Sometimes I feel overwhelmed with this stuff. It’s just hard when it’s all happening at the same time. It’s not like it’s all hard, though. It’s definitely not hard to see that little face smile or to watch him make strides despite it all. He really amazes me.