Showing posts with label miralax. Show all posts
Showing posts with label miralax. Show all posts

Sunday, April 21, 2013

More research at the MIND

While we were at the UC Davis MIND institute participating in the sertraline clinical trial, we participated in another research trial. This was going to be taking an MRI of Logan's brain. The research team is comparing images of children's brains who have Fragile X to those of typical children, and also comparing them to children's brains who have autism. 

We want to help Fragile X research as much as we can, so when we were asked to participate in additional research during our stay, I said as long as we don't have to sedate Logan we would love to help. An MRI machine is very, very loud though. Logan is a deep sleeper, but we practiced every night the week before the MRI scan anyway. We went in after he fell asleep for the night, and put earplugs in and headphones on very carefully so we wouldn't wake him. The MIND institute sent us a CD of the sounds an MRI machine makes and Michael copied it and put it on Logan's iPod. We play Enya music on Logan's iPod/iHome every night for him, so once we put the headphones on we switched the iPod to the MRI sounds. These sounds play for about half an hour. He barely even stirred during this whole process. (He definitely gets that from Michael, not from me!)

The night of the MRI, Logan and I reported to the clinic at his normal bedtime. Michael wasn't allowed to be there since he has lots of metal and pins in his knee and the MRI machine is basically a huge magnet- not a good combination! I had to make sure I had no jewelry, bobby pins, zippers, or anything metal on me or Logan. The tech checked us over before we entered the room. The team was so great, they even played Enya over the speakers for Logan, which they had never done before! I donated the Enya CD we brought and used that night since they said they think it would help children in the future to relax and fall asleep. 

They had a sheet draped over the machine so Logan couldn't really see it, and the lights were down low. Logan thought we were just having a slumber party, since they had stuffed animals, pillows, and blankets on the platform outside of the machine. Logan and I laid down with the music playing, and I read him his bedtime story and he had his bedtime cup of milk. He started pointing out different things in the room, kept giggling since I was laying in bed with him in a new place, then in about 10 minutes he was completely asleep. The team came and checked on us, had me climb down from the platform, and gave Logan a few more minutes to get into a deep sleep. Then we went back in and I put his earplugs in and headphones on. We adjusted him so his head was in position, and then we were ready to go. They had me in the room with headphones on, and when the MRI started it made me jump, even with the headphones on. Logan though, slept right through it! The scan lasted for 35 minutes, and every time the sounds changed in the machine it made me jump. The tech said it always makes her jump too, just because it's SO loud. Logan slept the whole time, just fine! The tech watched Logan's face the entire time to make sure he was still asleep, while working the machine. He of course slept through the entire 35 minute scan.

The team was so great, they even let me take pictures after we were finished. Here is Logan still asleep, after the scan is complete:
 Here are some of the images they got from the scan. They also sent us a dvd so we could see Logan's entire brain in 3D!
I think this is just so cool! It's so amazing that this huge magnetic machine can see inside the human skull. Crazy! Anyway, I'm just so glad we could help with Fragile X research of any kind. They said the doctor would also look at the images of his brain to make sure there is nothing out of the ordinary showing up as well. Overall this was such a cool experience!



Wednesday, March 23, 2011

Dirty Diaper Overload!

Well it may be 2 in the afternoon here, but I'm still drinking coffee like it's going out of style. Why? Oh, just because Logan decided to wake up at quarter to 5 this morning. And of course last night Michael and I stayed up WAY too late watching Black Swan. (It was so good!!) I'm the kind of person that has to have a say in what movie we watch, but then always falls asleep 5 minutes after we start it haha! This movie was THAT good though, that it kept me up the whole time, way past my bedtime! Totally worth it. :yawn:

Logan was sick last week, so I thought it would be okay to bring him into bed with us when he woke up in the middle of the night, not feeling well. A little extra love makes everyone feel better right? Well, that was pretty much the BIGGEST mistake EVER. With Michael snoring away on his side of the bed, then baby Logan snoring away in the middle while sprawled out as much as possible, and me not able to sleep at all because I literally only have one shoulder and one leg actually on the bed, too afraid to move for fear of waking up said sleeping baby, I felt like I should be in a NyQuil commercial or something. The before NyQuil scene. Worst night's sleep ever. Okay, lesson learned right? Move on? Wrong. Logan is a creature of habit, so now he wakes up every morning around 4 or 5am crying, not wanting to go back to sleep, and I know exactly what he wants. Mommy. Well, mommy's spot in bed anyway. I am either going to have to start practicing some tough love and let him cry himself back to sleep, or I'm going to end up sleeping in Logan's crib!


Logan has been copying anything and everything we do. When I'm folding laundry, he's right there unfolding it, trying to put it over his head, or on his feet, or just holding it up like he's folding a towel. When I'm unloading the dishwasher, he's right there taking the silverware out and taking it to the drawer. The right drawer, too! I say this all the time I know, but he's SO SMART! He may not be able to say any words yet, but he can remember the tiniest little thing, days later. I was sitting down one day, holding his hands while he jumped up and down, then asked him for a hug. He gave me one, which was awesome, then he walked away to go find Daddy. Or his shoes, who knows. Well, the next day he came up to me, grabbed my hands the way I did when he was jumping, and jumped 2 little jumps then gave me a hug! It was so sweet, but so awesome that he remembered it exactly right. So that's our thing we do now, jumpjumphug I call it, and it's the coolest thing ever. 


Logan also knows how to undress himself completely now. He has woken up from naps completely, totally naked. We were told to put his footed pj's on backwards, which we did try once, but it didn't seem very comfy! He slept fine in them though, so I guess it's okay. Better than waking up naked! My biggest fear is that it would be a stinky diaper he's taking off.... :shudder: not even gonna go there! 


Speaking of stinky diapers. Oh my goodness this little guy has had enough stinky diapers for him and 3 other kids his age, combined. For about a year, he was having at least 4 or 5 bowel movements a day. They weren't just a minor inconvenience either, they were a HUGE effort for him. He would ball up, turn red, stick out his tongue, and grunt from pushing so hard. That would go on for about 15-20 minutes, then there would be hardly anything in his diaper. Then about an hour or 2 later, he would try again. I took him to his regular doctor, who suggested more fiber. We tried that. He had also suggested switching to soy milk. Tried that too, nothing changed. At all. His doctor was puzzled because he would be straining so hard to get it all out, then what did come out would be soft and mushy, so it shouldn't have been that hard to push out. (sorry, way too much info, I know). After the 2nd visit for the same issue, Logan's doctor referred us to a G.I. specialist, or Gastroenterologist. We ran into the same problem we always do, the wait time for appointments is at least 6-8 weeks. At this point, I was beyond frustrated, and Logan was beyond exhausted. He was trying to go every half hour some days! And we would have to change his diaper every time, so we were FLYING through the diapers. Kind of an expensive habit! I didn't realize how bad it had really become, until we went to Speech Therapy one morning, and in a 35 minute session, he had 2 poopie diapers. He had spent the entire session straining to go. I decided that was it, we're not waiting another 6 weeks to figure out what's going on! Michael and I called the doctor one more time, who said there's not much they can do, but to just take Logan to the ER. So we did. When we got there, we got right in, but the on-call doctor was, for lack of better words, AWFUL. She is one person who should NOT be working in pediatrics. She was irritated that we had even gone there in the first place, when we had an appointment with a specialist in 6 weeks. I told her Logan can NOT keep going like this, he is straining almost constantly, and can't even focus during therapy. She reluctantly agreed to an x-ray. When we got the x-ray back, it showed Logan was completely backed up. He had some sort of blockage, so he when he was trying to go, only tiny bits could come out at a time. I felt SO bad, he's probably been so uncomfortable this whole time! The doctor said a lot times, children with disabilities have digestive issues like this as well. The doctor told us to give Logan Miralax twice a day, which is a mild laxative. She said he should be cleaned out by the time we go see the specialist. I was NOT okay with this answer. Logan's been going and going and going non-stop, so we're going to give him a laxative to make him go MORE, and HOPE it works by his appointment in 6 weeks?! No. Logan has had diaper rash almost constantly, because he's constantly trying to go. Lets make him go more?! Not okay. I told the doctor we need to do something for Logan, NOW. She said he's not an extreme enough case, to qualify for an enema. Not an extreme case? Try changing poopie diapers non-stop for a year, and tell me if it's extreme. She reluctantly gave him the enema, which I could tell by the next morning had created an immense amount of relief for little Logan. He was more active, and just seemed healthier and happier. 

We continued to give Logan the Miralax while we waited for the G.I. appointment, and of course on the day of the appointment, the x-ray showed Logan was completely cleaned out. Not backed up at all! Woo hoo! The doctor said to continue with the Miralax, reduced the dosage, and said to come back in 3 months and if Logan is still having problems he will order some bloodwork. So, that's where we're at right now. Logan was doing great, only going once or twice a day for awhile, but this past week he's been working back up to 4, 5, even 6 times a day. This Mommy is going to have the scent of poopie diapers permanently in her nose for the rest of her life, I'm afraid! 

There's been a lot of things thrown into the mix so far on my journey through motherhood, but no matter what is going on, Logan is happy. He is always just plain happy! His smile makes all the stress and worry disappear, and no matter what is put on our plate, it's worth it to have Logan in our lives. We just love him to pieces! And he loves us to pieces right back! :)

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