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! :)

Tuesday, March 15, 2011

How exciting!!

I was so excited to find out my blog was given the Stylish Blogger Award! Thanks SO much to one of my favorite fellow bloggers, Kathy, who gave this award to me! Kathy is at http://www.mydishwasherspossessed.blogspot.com/ 


It was very exciting to have somebody acknowledge all the hard work put into my blog! Pretty darn motivating! :) 
Thanks Kathy!


In order to completely accept this award, I have to do a few things:


  1. Thank and link back to the person that has given you this award.
  2. Share 7 things about yourself
  3. Award 10-15 blogs you feel deserve the award
  4. Contact these bloggers and let then know about the award.
I want to give this award to some very deserving blogs:
Wifommy Chronicles

The Other Lion

My Life As a Mother Of A Disabled Child

The Fragile X Files

Paula's Place

Our Life...

Mrs. Roger's Neighborhood

In My Mommy Opinion

Finding Normal

A Mother's Motions


To those I gave the award to, just follow the steps I just listed to accept your award! :)

So now the hard part... 7 things about me:

1. I love love love the color pink. Ever since I can remember, my fav color has always been pink. Just makes me feel happy and girly! :) 

2. I am obsessed with Pico de Gallo. I would eat it every single day if somebody would come and chop all the onions for me! :tear:

3. I am a Washingtonian, but hate the rain! 

4. My parents are very high up on my list of fav people. 

5. My sister and I have the worst memories ever, but at least we can laugh about it! And we do, quite often! 

6. I love dance music. Not the kind you hear on the top 40's list. TRUE dance music. And hate rap.

7. I am a Christian, and was baptized by my dad in the Pacific Ocean :)



That's all for now, have a great week everyone!

Saturday, March 12, 2011

Just add it to the pile...

I cannot even express to you how happy I was to find this energy/coffee drink in my fridge this morning! We ran out of coffee and I don't function well with no caffeine. I'm pretty sure Logan thinks his Mommy's crazy after watching her do a happy dance when she found this!

This was a pretty tough week for me. As always, the best way for me to handle stress is to write about it. So here we are. Logan will be switching therapy centers sometime in the next week to 2 weeks, since we moved out of the county we were residing in last year. Logan loves his therapists, but it's such a long drive now and his speech therapist will be on maternity leave soon, so it looks like all signs are pointing to switching centers. I brought it up to his physical therapist on Monday, and didn't realize how hard it will actually be to say goodbye! She supports whatever is best for Logan and best for our family, but she was downright bummed! I kept telling myself "I will not cry. I will not cry!" during our conversation of how much she has seen Logan grow and learn, and how much she has helped us, not only with Logan's therapy, but this whole transition to our new life. She was working with Logan back when we thought he was just needing a push, she was one of the first people I called when I found out Logan's diagnosis, and she has even been there as a friend when we were planning our move and stressed out to the max. I didn't realize how precious a good OT/PT is to a special needs family until we started thinking about switching! I know there will be fantastic therapists at Logan's new therapy center, but it's still hard to say goodbye to somebody who has been such a strong support to us.


Rewind a little bit, to when Logan was about a year old, and we started noticing one of his eyes would turn in and upwards randomly. It happened so rarely that at first only Mommy and Daddy saw it. Then Gramma and Grampa. Then his physical therapist. When other people finally started seeing it and we realized we weren't imagining it, we took him to his doctor. Luckily, the doctor was able to see it for just a split second, and wrote us a referral to an optometrist. We went to the appointment nervous about what could be causing it, and unfortunately the appointment was a disaster. The only available appointment was right in the middle of Logan's usual nap time, and he was NOT happy to be there instead of snoozing away in his crib. The doctor had very little patience for Logan, and after a very quick exam he stated Logan had perfect vision and the only thing that could be causing it would be neurological. Well, this was before we had been given Logan's diagnosis of Fragile X, and his words stung, HARD. Michael was not okay with how the appointment went, and informed the doctor of this. The doctor was very offended that we didn't say "ok" and tuck our tail between our legs as we left his office. We will NOT be pushed aside just because Logan wasn't acting like all his other "normal" patients. Logan might be whining, tired and chewing on his finger non-stop, but he still deserves a proper exam! The doctor asked us to come back in 6 weeks if the conditions hadn't improved. Well, of course they didn't improve because nothing was done to treat it! Logan was still crossing his eye, and it was becoming more and more frequent. We made one more appointment with the same optometrist and got the same result: it was either in our heads, or something was going on in Logan's head. Well gee. Thanks doc. 


I mentioned this at our last appointment at the Fragile X clinic, and the doctor was less than enthused to hear how we were treated. She referred us to an opthamologist in Bellevue. We were able to get an appointment right away, and went this past Wednesday morning, bright and early. Other than a slight mishap of Mommy getting pulled over right in front of the hospital, we head inside with a positive attitude. They were GREAT! Like Tony the Tiger Grrrrrreat! Every nurse, doctor, and receptionist that we made contact with was so patient and knowledgeable. Logan was NOT happy to be having his eyes dilated, but the doctor was able to do her exam no problem. She advised me that Logan is far-sighted, so when he's trying to focus on something close up his eye turns in from him trying so hard to focus. She advised me Logan will need glasses, and hopefully since he's so young it can correct his vision so he may not need them forever. I don't know why, but I got SO upset when we left the hospital. I sat in the van, still in the parking garage, and had the hardest, biggest cry I think I've ever had. I just felt like everything that could go wrong with a child, is going wrong with my son. It sounds superficial to be upset about glasses, I know this, but I felt like it was one more thing added on to this tall pile of things, and that pile had already been swaying and tipping for awhile now. The pile finally fell over and I lost it. If anybody was in the car next to me in that parking garage, I'm pretty sure they moved their car to get as far away from the crazy lady in the minivan as possible. 

I compose myself and make it home, and put Logan down for his nap. I talk about the day's events with several friends and family, and some assured me "It's not a big deal" and some felt the same as me, that it was all just too much for such a little guy. I started thinking about the other things that had already been on that pile. The fact that I've been very, very stressed about Logan's school situation. The fact that if one single child made fun of my Logan at school or made him feel self-conscious in anyway, I would want to snatch him up and move to another country, homeschooling him for the rest of his life. The fact that even after school age, I have to think about the possibility of him needing care after the age of 18. Thinking about what his birthdays will be like when he's a teenager. Will he want to have a skating party with all his friends, or will he still want a Spongebob cake with only family around so he won't feel uncomfortable? Will he ever have a driver's license? The future is so full of unknowns and "what ifs" that it seems all I can do to stay sane is push it all aside in my mind and move on. The only problem is that it's still there, and I know it. 


No matter what the future holds, I will be there for Logan every step of the way, and so will Michael, that's one thing I know for sure. He will be loved and supported no matter what. I just wish I had a little bit more control on this journey that we're taking. I wish I could see into the future, and be able to prepare myself for what's coming next.

I will be focusing on giving Logan all the therapy we can, to prepare him as best we can for school. He absolutely loves to swing, so we're shopping around for a swing to hang on our back porch. We are also in the market for a mini trampoline, and an exercise ball. These are all things that Logan responds to positively, so I want to have them available for him 24/7. We will just concentrate on what we can do for Logan right now, today, and leave the future for tomorrow. 

"Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why we call it 'The Present'."- Eleanor Roosevelt

Saturday, March 5, 2011

The Social Challenge

I wanted to share this powerful, informative video. The woman in the video, Holly, is in the Fragile X group that I'm a member of on Facebook. I can honestly say she is a role model for Fragile X advocacy! 

I am now taking the Social Challenge at  www.thesocialchallenge.org and I encourage all of you who have been affected by any sort of disability in your family or friend's families to do the same! I want my son to grow up without knowing this word in a derogatory way. Thanks for taking the time to watch it, now please pass it on!

Thursday, March 3, 2011

A picture speaks a thousand words... or at least one.

Logan and I just got home from Speech Therapy, and since he tried to fall asleep when we were about 30 seconds from home, he's now wide awake and refusing to take his nap. I poured myself a fresh cup of coffee, and I can hear him in his room jumping as always (he already broke his first crib from jumping!) and laughing. Which reminds me, in honor of Dr. Seuss' birthday yesterday, I took some pictures of Logan's room I've been working on:

Logan seems to like it, and I was able to re-use a lot of the decorations from his Dr. Seuss birthday party from last summer, score! He has quite a few Dr. Seuss books, but I can't keep them on display in his room for very long, he grabs them quicker than I can set them up. This boy loves his books!

It was great talking with his Speech Therapist Kerry today about the Fragile X conference. She was ready to soak up whatever information I was willing to give her. As soon as I gave her an example of how Logan would learn best "indirectly" as Marcia Braden had taught us, she was very excited to hear it and started talking about she does believe this, giving examples of things Logan has learned that neither of us showed him how to do. Logan absolutely loves Kerry, but unfortunately she'll be going on maternity leave at the beginning of next month. We're happy for her, don't get me wrong! But now we need to figure out an alternative for Logan's speech. It's not something I'm willing to take a break from at all. 


Speaking of speech therapy. Logan is non-verbal. He can't tell us when he's thirsty, hungry, overwhelmed, tired, or needs a diaper change. We have been trying to figure out a way for Logan to be able to express his needs in a different way. We have been giving Logan access to Goldfish boxes, yogurt containers, all his favorite snack choices that he can then give to me when he wants one since he can't tell me with words.
This is to prepare Logan for the PECS (Picture Exchange Communication System) that is widely used for non-verbal or speech delayed children. Although, Logan isn't quite seeing that a picture of a "Cheez-It" is the same thing as the actual yummy cheesy cracker he can stuff his mouth full of. After seeing some of the educational systems Marcia Braden has available for FX children, I decided rather than an actual box of Cheez-Its hanging on the wall or fridge, maybe I could find a miniature of it. Kerry suggested putting a magnet on them and hanging them on the fridge, which I agree with. That way Logan will see it, and make the connection that it's in the kitchen, and bring it to me to show he wants a snack. Now my mission for the next few days will be to find miniatures of all Logan's favorite foods! Fun!

I know I keep talking about this Fragile X conference, but it made such a large impact on me that I can't stop thinking about it! I am so glad we went, and I feel like it not only taught me a lot about my son, it also prepared me for what the future might hold. I was able to meet an adult with Fragile X, and see how he interacted with everyone at the conference. It was great for me to see, and he did very well I might add! We also watched some videos of FX children in junior and senior high school. This part of the conference was very educational, but very very hard to watch. It showed the obstacles some FX children have to go through, from time at the library, to PE, to simply eating lunch in the loud, crowded cafeteria. A part of me wanted to say I'd made the decision right then and there to homeschool my little boy forever, but the larger part of me knows that's not fair to him. He would miss out on so much interaction with other students, and things like music class, that I'm sure he'd really enjoy. I will admit, there were a couple times during the conference that I shed a few tears, but it was good for me to watch and accept that these are all things that could be in our future. 


Logan has been waving "hi" and "bye-bye" like crazy! I seriously think he practices when he's alone in his room and we think he's sleeping. He waves at us, then claps for himself LOL! It's pretty much the cutest thing anybody could ever see. Another obsession that he's had the last couple days is belts. He keeps finding them in our room, and here he comes at me, on a mission, with an adult size belt trailing after him, and he wants to wrap it around my waist. No matter what I'm doing at the time he'll keep shoving that belt at me til I drop what I'm doing and wrap it around my waist, or his waist. This makes me nervous though, and if I have to leave the room for a minute I take the belt with me as I can just see him wrapping it around his neck or something! GAH! I wish he would go back to his shoe obsession! 

Yesterday I participated in the campaign "Spread the Word to End the Word" and took a pledge online that I will not use the "r-word" in a derogatory way. I shared this with my friends, and a couple of them took the pledge too (yay!)! You can do the same here:



As I was emptying out some of the last few boxes in our home, Logan kept looking at this large empty box in the living room. I decided to put him in there to see what he'd do and he was so excited! I guess he felt like King of the Castle or something haha! 
Speaking of King of the Castle, Logan made himself a little throne to sit on out of our throw blankets one night while watching Blue's Clues. He sits in the funniest spots in the room, and in the funniest positions while he's watching tv or a movie.


Well since Logan finally stopped jumping and went to sleep, I will end this post here. Be back soon!
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