7 Quick Takes... SATURDAY!

1.
My final is over! I was taking an online nutrition class this semester and there was a lot of busy work involved. We even had a group project that we had to participate in. I HATE group projects with a firey passion... imagine doing it online. Yuck.

I got an A in the class, which I'm pretty happy about. I have one more pre-req to take and hopefully I do well in that class. If I do, I'll be taking a 4.0 GPA into my application process for nursing school and I think that may help... just a little!

2.
I haven't had a chance to blog or even read any blogs because I've been studying when I can for my final. And I have two knucklehead kiddos that are REALLY starting to become quite the pair of trouble makers. Sam is starting to get into that ornery stage. He's definitely more toddler than baby. He can be quite challenging! But now that he's getting older he and Joe are playing together more, which is awesome. It is so incredibly fun to see them chase each other and laugh and giggle.

Oh, the humanity!

Sam loves the tree!

3.
Joe and Sam went to their first dentist appointment this week! I've been procrastinating on taking Joe in and Sam is getting a really bad build up on his teeth since he's on an all-liquid diet. I mean, his teeth look red neck gross. So I called a pediatric dentist and figured that we'd have to wait a couple of weeks to get in. To my surprise, they had quite a few cancellations for the next day. By the time I got off the phone I had made an appointment for my boys... during the day... during Sam's naptime... and at a time that Ryan would not be able to get off work to help me.

I basically chalked it up to being completely crazy for having done that.

But the appointment actually went well! Joe was very good and only cried when they were cleaning his teeth. He has two very small cavities that will be addressed at our next visit in 6 months. His dentist thinks he'll have to be completley put under since she doesn't think the laughing gas will be strong enough for him. I tend to agree.

Sam was fine unless the hygenist or dentist came near him. There was a lot of screaming, but the hygenist got his teeth clean.

I was very worn out afterward but proud for taking the boys myself. Everyone at the office was awesome so that made the experience a little easier!

He got to snuggle with some friends while they examined his teeth.

4.
Last Friday we went to see Santa. When Joe was about 3 months old he sat on Santa's lap with no problem. When he was 15 months old he screamed bloody murder. Last year he sat on a chair by Santa for a photo opp, but didn't tell him what he wanted for Christmas. This year was the first year that Joe really understood the concept of sitting on Santa's lap and telling him what he wants for Christmas. His list? A Monster's Inc. toy and a tummy stuffer. He recently added paper clips to his list. I don't ask questions anymore.

Of course, Sam screamed. But I was a little dissapointed with this Santa. Maybe he thought Joe was too young, but he didn't even really interact with him. He didn't even really smile in the photo. I figured it was because he had a screaming child on his lap, but another friend of mine took her daughter who is older than Joe to the same Santa. She wasn't screaming but this Santa had the same "Kill me now" look.

Joe really did love Santa, despite the deer in the headlights look.

I don't really remember my experiences with Santa as a little kid. I was never afraid of him, but I don't remember if any were particularly jolly. I guess years of watching Miracle on 34th Street set me up for thinking all Santas were jolly and kind.

Thankfully my quest for a "good" Santa came to an end just a few days later after Mass. Santa was there and he actually took the time to talk to each kid. We didn't subject Sam to the torture again.

5.
Yesterday was Sam's occupational therapy session with his new therapist. I'm not too terribly impressed with her demeanor... but I wasn't with Joe's therapist either, but she got the job done very quickly. I'm really hoping this time around will work... I'm just so worried about Sam not getting enough nutrients.

6.
I'm so in the mood to bake. I don't enjoy cooking meals, but I LOVE to bake. I just don't do it very often since I hate cleaning up. My favorite Christmas cookies are called kringle cookies. We always bake them on Christmas Eve at my mom's house, but I'm thinking I might have to make them a little sooner!

7.
Do any of you watch Homeland? Ryan and I love the show and we're psyched for the finale tomorrow! Brody is totally going to die. I just know it!

Well these are completely random and all over the place. It doesn't help that I'm finishing these up at 12:30 at night! Have a good weekend y'all!

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How to dry a turkey...

So I never got around to writing how hosting my first Thanksgiving went. Well... no one gagged, no one died and no one complained. So I guess that's a success!

I followed the directions for thawing the turkey... but apparently I still failed at that. The inside of the turkey was still somewhat frozen. We couldn't even get the neck out. So I put it in a sink of cool water. Thankfully it warmed up a bit because my mom got the neck out with no problems after about 15 minutes. But when you have a turkey soaking in water that long... it gets really really really wet.

Everything I read said to make sure the turkey was dried off well after rinsing it. Well, water was just SOPPING out of it and no amount of paper towels was getting it dry. My mom suggested using a hair dryer... only half-way kidding. I poo-poo'd the idea until I realized that it might just work.

So I used a hair dryer to dry the turkey. And it actually turned out OK!

Now begins my favorite time of year. I am one of those annoying people who love Christmas. I actually get teary eyed when I see Joe get excited about Christmas lights. I'm Buddy the Elf in female form. I'm trying hard to celebrate the anticipation of Advent... mainly for Joe's sake. I'm trying to focus on Baby Jesus... but I can't help that I get super excited when Santa comes to feed his reindeer at 10:00 central time on reindeercam.com! SANTA!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I hope you all had a wonderful Thanksgiving holiday with family and friends. Things will be quiet around here since I'm entering finals week. Happy Advent, y'all!

Joe's Neurology Appointment and Other Tid Bits

Yesterday Joe had his first neurology appointment since his seizures that occurred in October. Thanks be to God his Depakote medicine is working and he hasn't had any episodes. Joe's neurologist is so amazing. She took time to answer our questions and explained things so well. It's been a weird month. My paranoia of Joe having more seizures had kind of faded away until yesterday when we were driving the appointment. But she is very optimistic that he could possibly outgrow this in a few years.

Sam has been having a rough time lately. On Halloween he was diagnosed with hand, foot and mouth disease. His gums were SO swollen AND he was getting his molars at the same time. Poor baby was miserable. He's in occupational therapy for eating issues. I hope to dive more into that issue some other time, but his therapist, who is very very knowledgeable and good at her job, is stumped. Sam just isn't progressing. He's finally eating baby food, but that's a hit or miss sort of deal. His therapist warned us that if things don't progress in the next few months that they might have to put in a feeding tube. I'm still exclusively breast feeding (and yes, I'm exhausted) but his body needs more nutrients now that he's older. I'm hoping that once he gets his last two one-year molars in that it will suddenly click.

I'm making more of my saint dolls. I made a St. Andrew doll for my priest since our parish is called St. Andrew's. I also made one of him. I think he got a kick out of them. I actually have two orders for some dolls which I'm pretty excited about. I have to order the dolls and will be busy working on those before Christmas.

My parish priest. Yes, he's THAT bald. :-)

St. Cecilia

St. Andrew

I'm hosting Thanksgiving this year for my mom and my brother's family. I've cooked a turkey before, but my mom helped me. This year I'll be doing it all on my own. I looked up how to rinse and dry a turkey (DON'T JUDGE!) and I was met with a slew of articles debating on if one should rinse a turkey or leave it alone. I don't remember what I did the last time I cooked a turkey. I probably made my mom do it after I was traumatized after taking out the neck and giblets from the turkey. Hopefully it will all turn out fine... and not like the turkey from Christmas Vacation.

I'm actually looking forward to cooking and hosting. When my mom mentioned me hosting Thanksgiving a few months ago I was all for it. We have a small house, but I can't wait to fill it up with family and the smell of yummy food. Hopefully not burning food....

Good advice.

I job shadowed last Friday at a hospital here in Kansas City. I followed a good friend of mine and was able to get a good feel for nursing. It was really fun! I'm in the process of finishing up my last prerequisite class and setting up more job shadowing hours. I'm excited to get the ball rolling but so nervous that I won't be accepted.

I think that's enough randomness for your day... Happy Thanksgiving, everybody! Eat lots of turkey and pumpkin pie!

Blogging Blackholes and Blogging Friends

The other day I was going through the list of blogs I follow. I'm trying to limit screen time and I wanted to weed out the blogs that I don't read anymore. It wasn't too difficult, because there were quite a few blogs where the author doesn't post anymore. In some cases the blog doesn't even exist at all! I went through some of my old posts and comments and there were some people who used to comment all the time, and I used to comment on their blog. We had a special online friendship, but it soon drifted away into the wind when they stopped posting.

I know that life gets busy and that is cause for a lot of the reason that these bloggers stop writing. But it's always a strange feeling when they shared so much every week, sometimes every day... their thoughts, their feelings, their day to day activities, their struggles and suddenly that door is shut. It's the same feeling I would get when I was young and a dear friend would move far away.

I somtimes wonder if my blog will ever get sucked into the blogger black hole. I often feel an obligation to keep my blog updated because I'm afraid people will stop reading. I get dismayed when posts I spend a lot of time on get no comments. There are times I kick myself for becoming so worried about a little ol' blog. I don't get paid to write this. I don't have deadlines. No one asked me to start this blog.

So why is blogging so important to me?

I started this blog a few weeks after my miscarriage ended in September 2009. It chronicled my first years of marriage, being a housewife, my pregnancy with Joe and the journey of first becoming a mother and then a mother to two young boys. This blog contains my frustrations, my fears, my hopes and dreams. It contains funny stories of learning to cook and sew and getting Joe to sleep through the night. It talks about my struggles with depression and dealing with an unplanned c-section. Basically, this blog contains my heart and soul.

And the best thing about this blog is the people I have come to know through the blogging community. Without blogging I probably would have never come to know Michelle from Endless Strength. She has become a dear friend and inspiration. She is Sam's godmother and I can't think of anyone better to be praying for my son.She probably would have been just part of another of the many families at my parish if it weren't for blogging. Actually, I might not have ever come to St. Andrew's because it was her blog that brought me there!

Katie from NFP and Me are practically twins. We like pretty much the exact same things and both curse like sailors. We both love our faith and sharing NFP. I would have never met her without blogging.

There are so many wonderful women bloggers that I have not met (I'm looking at you, Sarah!) who I consider friends, and without them I would have barely gotten though some tough times. They have sent me care packages, books, music and even hand-me down clothes for my boys. Just knowing I have some very special prayer warriors out there petitioning for me is a great source of comfort. In turn, their sorrows and joys become my own.

That is why I still cling to blogging. I don't feel quite as guilty anymore for not posting as much. I have to cut myself some slack because I am now in school. I have to focus on that in order to hopefully get into nursing school next year. Plus, I have a husband and two young children that deserve more of my attention than blogging. But the words I have written down and the words in my head are far too valuable to give up right now. The memories and friends I have made though this process are too precious to me.

I still wonder where some of my old blogging friends have gone. I know they have moved on and are living their lives and that is fantastic. I still hesitate to delete their blogs thinking that maybe someday they will be back.

In the meantime, I pray for all my blogging friends, both past and present, and I hope it is a long time from now when I reach the point that it is time to stop blogging and close down From the Heart.

DINOVEMBER!

Have you heard of Dinovember? A friend of mine posted about it on her Facebook wall and as soon as I read it I decided that I was for sure going to this. The idea behind Dinovember is a child's toy dinosaurs come to life at night, usually participating in some shenanigans. When the kid wakes up the dinos have frozen in place! Some of the scenes I've seen are dinosaurs singing karaoke, drawing on the walls, and playing a board game.

Last night I secretly gathered all of Joe's toy dinosaurs and arranged them so that T (the t-rex) and Alan (the velociraptor, named after Jurassic Park's Alan Grant) dumped a whole box of animal crackers on the kitchen table! The brachiosaurus sipped on a juice box, and the triceratops fought over a Cheez-it while the stegasaurus pigged out on a whole bag. Having kids is so much fun because it give me a chance to play again!

Joe woke up, saw the table and at first was like "What the heck?!" But then I started explaining what had happened and he thought it was pretty funny. He kept asking, "Did Daddy do this?"

I don't plan on doing this the rest of November since I'm afraid it won't be fun anymore because I'll be stressing out over finding creative ideas. I might do it four or five more days and then I'll post the rest of the dinosaur's adventures.

I overheard the dinos discussing how they wanted to do a family movie night tonight...

Scenes from this morning

DINO PARTAY!

P.S. For some reason the video I tried posting yesterday of Sam smiling didn't work. Here it is. You're welcome. :-)

This Will Make You Smile

Once again I have a million thoughts in my head and would love a chance to sit in peace and write them out. But as usual... that isn't going to happen! So I thought I'd add some pictures and a video that is FOR SURE to make your day.

Sam now smiles on cue. It makes my heart burst into a thousand pieces and melt into a pile of love goo.

He looks like a little old man.

And of course we have video of his cheesy smiles.



He is too cute!

I don't know if I've ever posted it on here, but Sam is in occupational therapy for eating issues like Joe was when he was this age. Sam's issues are a little more difficult. Joe could eat babyfood, but gagged on it a lot and never ate solids. Sam won't eat solids OR baby food and still won't drink out of a sippy cup. Needless to say, exclusively breastfeeding for 15 months is a wee bit tiring. Sam's therapy sessions have been interrupted by Joe's hospitalizations and then getting hand, foot and mouth disease! But much to our delight he is FINALLY FINALLY FINALLY eating baby food!

You can kind of see his baby food mustache! :-)

It's the little things that make me happy. Hopefully this post has made you happy, too!

More About the Saint Dolls

Thank you for all the kind comments yesterday regarding my saint dolls! A few people asked questions about them, so I wanted to share the links I used to learn how to paint these.

Click here and here for the links! Some day I might post my own tutorial.

I bought the small peg dolls in the wood craft section of Hobby Lobby. Michaels sells them as well. I wanted to paint the larger dolls but it seems the only place you can find them is online. I ordered them through Woodworks Ltd.

They take a lot of time, but are really fun to make!

Saint Dolls!

I am not a fan of Pinterest. Basically it makes me feel like a big fat lazy blob who is depriving my kids of glitter and glue-filled memories. But for the most part the reason I avoid Pinterest is because I can get very over my head with "projects." A couple of years ago I was determined to teach myself to crochet. With a lot of YouTube video watchin' I figured some of it out... but can never get pass crocheting a square... and even then I start to miscount my stitches. There was also the year I bought a sewing machine and had big visions of sewing quilts and curtains. I did sew Joe's first Christmas stocking... but I fear it won't last.

But this past week I saw a cute little project on a Catholic mommy facebook group. I had never heard of them before even though I guess they are all the rage in some mommy circles. They are wooden saint dolls and I'm obsessed with them!

Late one night I saw someone post a picture of these dolls on the group and vowed the next day to go get supplies to make my own. I got my supplies and jumped right in. I found out later that it's better to make them with bigger sized dolls, so I decided these little dolls were going to be my experiment.

They take FOREVER to paint because you have to paint the different layers. I also made the mistake of painting some of them when Ryan wasn't home. Do you know how hard it is to paint teeny tiny eyebrows on a saint's face when you have two little minions crawling all over you?

I figured it would be an epic failure, but I'm pleased with how they came out. I made the mistake of using a paint pen for St. Joseph's eyes so when I sprayed the gloss it made his eyes bleed! I was so mad because he was my favorite! I tried to fix it but it just turned out weird. Oh well.

The best part? Joe LOVES them! Sam does as well, which makes for a lot of fighting. Joe can identify who the people are. I always feel so guilty that I'm not teaching him enough Catholic stuff, but I think I found a way to make learning about the saints fun! Joe loves these dolls so much he's constantly saying "Make more, mommy!" and when I'm painting it he demands, "I need it now!"

Here are some pictures of the finished product!

Blessed Mother

St. Joseph... you can see where I messed up the eyes...

Sacred Heart of Jesus

Nanananananana JESUS!

Our parish priest, Fr. Rogers and Pope Francis

The Gang

The Final Part of the Story and My Thoughts as a Mother

This is part three of our story of Joe's epilepsy diagnosis.

Part One


Part Two

The next day we saw the sunrise from our 6th floor hospital room. It was beautiful. It was kind of like God was saying, "Today you will be at peace."

Sammy and the sunrise

The night before we had received a definite time for the MRI, so we planned our meals accordingly. It was much less stressful that way.

Joe was still tethered to his EEG machine, so he couldn't go far, and it was starting to bother him. Thankfully we crafted a play area on the floor, brought him toys and the nurse moved the camera so he was content for awhile.

The mega neurology team came early in the morning. Dr. Cruse sat down to deliver the news of Joe's EEG results. "Well, the EEG is normal. That's good because we can rule out the 'bad' stuff." He went on to explain that no medication would be needed since it was just a one day thing and that we'd just have to watch out for anymore episodes. We would still have the MRI just to rule anything out.

While I was very happy to hear that no "bad stuff" had been found, I still felt uneasy. Was this seriously just a fluke thing? A one time deal? I was fearful of the thought of going home with no answers. I would be constantly paranoid that it would happen again... this time in a much worse manner. Would I ever feel comfortable enough to let him stand on the kitchen chair and help make cookies? Would I constantly be following close behind him while he walked for fear that he'd seize and violently fall over? I am a control freak who wants to know what is going on. I hate unanswered questions. Was this whole torturous (and expensive) hospital stay for nothing?

We spent the rest of the day waiting to go down for the MRI. A vascular team came to put in an IV. Even these specialists were impressed with how strong Joe was. It went a little smoother than other times, but you can never get used to your baby being in pain. Then we learned the MRI was bumped from noon to1:00. While we were waiting, the EEG technician came in to remove the electrodes. Joe freaked when he saw him but we assured him he'd like this part. Joe fussed a little when the tech was removing the electrodes, but for the most part stayed still. I sat in bed with him thinking that he'd want to get up and play now that he was free, but he was getting tired, so we popped in another movie.

Probably 10 minutes after the EEG guy left another doctor came up. I recognized her from Dr. Cruse's neurology team. She introduced herself as Dr. Zuccarelli and pulled a chair up to the bed. When she did that I knew something was up.

"I know we told you that Joe's EEG was normal. But that was based on an earlier reading from last night. He just read the rest of it, and it does appear that there are abnormalities."

It was then she told us the diagnosis: myclonic epilepsy.

His brain was just made a little different, and these nerve currents just fire a little differently. He has a disposition for seizures and certain things like lack of sleep can trigger them. Just a few weeks ago Ryan and I cut out his afternoon nap in hopes he would start sleeping better at night and I fear that could have been the cause.

She went on to explain the precautions we'd have to take, what to do if he has seizure and different issues and situations to look out for. She explained the medication he would now have to take and the emergnecy medicaton we would have to carry on us at all times (like an epi-pen) in case he had a seizure lasting 5 minutes. She was so nice and comforting and straight forward.

I sat there holding my son and tears streamed down my face. Joe was starting to nod off to sleep and I just held him tighter and tighter. I was so glad to have answers, but this just broke my heart. I knew this could be the diagnoses, but actually hearing it said out loud was heart wrenching.

She left and soon it was time to wheel Joe down to his MRI. Ryan and I went with him and waited awhile in the pre-op area reading him books. The anesthesiologist came in to do a quick check up and when he was listening to his heart it was taking a long time. He told us to lean him back and we did and he listened to his heart again. He said the reason he did that was because he heard a heart murmur. I was like "Are you effing kidding me?!?!" I almost had to laugh because SERIOUSLY?! But he assured us that it was a very very common thing and as soon as we laid him back the murmur went away. 

Soon the nurse came in and gave Joe some anti-anxiety meds into his IV and he gladly went with her. She didn't give us a chance to say good bye as she walked away. We were lead to a waiting room. I went up to nurse Sam, meet up with my dad, and grab some lunch.

When I came back to the waiting room I sat down with Ryan. We hugged and talked because that was really the first time we could do so since we go to the hosptial. Joe being in the MRI was probably the hardest part. Thinking about him being alone in a metal tube made me sad. I knew he was sedated, but I was still forlorn to be away from Joe. I was afraid he'd wake up and be afraid that we weren't there.

When they called us back he was still very very very asleep. We snuggled him in a wagon and rolled him back to his room. He stayed in a deep sleep for a very long time. Ryan's mom and my dad left. Ryan loaded up the van because we would be released soon after Joe woke up and ate something.

Sleeping after his MRI

When Joe woke up he was very loopy and goofy. It was actually pretty funny. They gave him some food and tried giving him his first dose of Depakote. They sprinkled it on some pudding thinking he would think it was sugar, but he wasn't fooled. We had to do a lot of coaxing and convincing for him to eat the pudding. Soon we were all packed up and ready to wheel him out to our van.

It was kind of bittersweet to say goodbye to the nurses. They had been such a tremendous help. It was also kind of scary because now we were on our own. We were armed with informatoin and medication, but it was aways kind of comforting to know the nurses were right around the corner in case there was an emergency.

We drove home, grabbed his prescription, let him watch a Batman movie and all went to bed together. I cuddled Joe, grateful that we were in our own comfortable bed. Tears rolled down my cheeks again as I tried to process it all. It really felt like it was all a dream.

My mom had told me how proud she was of me for being so strong. I have to be strong for Joe's sake, but I'm tellling you this has been so hard. Joe has always been so healthy. He went a whole year without seeing his pediatrician. I'm just so confused as to how this could happen. Dr. Z assured us that he would develop into a happy and healthy little boy even with epilepsy, but there will be a part of me that will now be forever paranoid.

I've always been a little paranoid as a mother. The sickening thought of losing my son HAUNTS me. Just thinking about those mothers and fathers of those precious babies killed in Newton, CT last year makes me sick to my stomach. Just knowing that one minute I can be holding my loving healthy boy and the next minute I could be burying him in the cold hard ground terrifies me. I whisper prayers of protection for Ryan and my boys numerous times a day. My love for Joe is so fierce and so strong that I just can't bear to think of him in any kind of pain. Hell, my heart breaks a little bit whenever he is ignored by another kid at the playground. I saw quite a few sick children there at the hospital, and while my heart went out to them, my heart especially ached for their parents. I am growing closer and closer to Mary, the Mother of Jesus now that I've become a mom. Sure, my son isn't suffering for the salvation of souls, but giving God the control and trusting in his will is hard no matter what.

Then of course comes the mommy guilt. I keep thinking that maybe if I wasn't so tired and zoned out or piddle farting on facebook so much that I could have caught these seizures sooner. I feel guilty that I've put my needs in front of my own children. This has definitely been a wake up call for me. I hid a lot of "friends" from showing up on my newsfeed on Facebook and no longer feel obligated to read a ton of blogs or comment on them. I've always felt this overwhelming "need" to blog... like I have such "important" things to say and I just itch to get them out there on the interwebz. But I don't think there are a whole lot of people out there reading these words, and that's OK. I don't plan on abandoning this blog completely, but it just won't be a concern anymore. I foresee a bunch of tickle fights and crafting in the future rather than blog posts about our hopes and dreams.

Joe has been doing well since this whole ordeal. He hasn't had one single seizure, at least when we've been around. We've had to switch from the Depakote crystals to liquid form because no matter how we tried to disguise it, he always figured it out there was medicine in his food. I felt like Kathy Bates from Misery when I was hiding the meds in his oatmeal. We have to take the normal precautions as any parent of a 3 year old does, but we have to be a little more vigilant. One thing that Dr. Z mentioned was that he can't really climb the monkey bars without us close by in case he has a seizure. Even the short myclonic seizures that last a second or two can cause him to fall and get seriously injured.

We aren't going to treat epilepsy as a disease or disability. We'll make the appropriate changes, of course, but we will strive to keep his life as normal as possible. There is a chance he could never have one ever again and even grow out of this epilispy. Since this has happened a lot of people have contacted me telling me they know someone who had/has epilispey and they have normal happy lives.

I just feel like Joe being diagnosed with epilepsy has placed limits on his childhood and general being a boy-ness. Just the other day at the park there was a 8 year old boy at the very top of the jungle gym. Of course Joe will be doing that someday, but if I am present I will be freaking out. Dr. Z said that if Joe goes swimming either Ryan or I HAVE to be there. He could drown in even one inch of water. She made it clear that it HAS to be Ryan or I there to supervise. Not even just Grandma Mary or Memaw and Papa. I asked her how that would work when he's 15 years old and wants to go swimming with his buddies. He will not want his mommy hanging around. She told us that we'd approach that problem when he is 15. But I get so scared thinking there is an ever present danger lurking in his brain that could cause him to get seriously hurt. I don't want this to hold him back from having a normal childhood. 

I am not wasting my time wishing and complaining that Joe didn't have this condition. It is what it is, and I have to deal with it instead of wishing it away. I DO hope and pray he outgrows it and that he never has another seizure again.

I think all of us who are mothers grow and change as the years pass us by. We go from brand new moms who are scared crapless about everything to moms with more experience who are still scared crapless, but have a little more confidence cutting baby fingernails. This situation has definitely shaped me into a slightly different kind of mother... hopefully a better one.

I want to thank everyone for their prayers and kind thoughts and words during this ordeal. It was truly scary, but I definitely felt the peace and calm from your prayers.

Joe's Hospital Stay Part 2

The first part of our ordeal can be found here.

Our first night in the hospital was spent with me crying and replaying the past day's events over and over again. Ryan was asleep on the couch with Sam and all I could hear was their rhythmic breathing. I kept looking at Joe's heart monitor, hoping the pattern of his beating heart would put me to sleep.

The morning came before we knew it and it was actually a good couple of hours. Joe got some breakfast and played with his animals. His two favorite people came- Grandma Mary and Memaw. We hung out in the room and watched cartoons. We also had a suprise visitor- Olympic swimming gold medalist Kaitlin Sandeno from the Jessie Rees Foundation was visiting kids in the hospital and she came by with a Joy Jar full of toys for Joe. She brought her Olympic medals and we go to hold them, which I thought was pretty nifty. She was so nice and it was a wonderful distraction from what was going on.

FOOD!

Kaitlin Sandeno and Joe

Showing Joe her medals

Soon after they left, Joe's neurology team came in. We had already met one of the pediatric neurologists and she had warned us that this "team" was quite large. She wasn't joking! Dr. Cruse was the lead doctor and there were about eight other attendings, fellows, and residents with him. I felt like I was in an episode of Grey's Anatomy. I explained (for the 1000th time) what had happened the day before. Strangely enough, Joe had not had a single episode. Dr. Cruse told us that they were going to schedule an EEG and MRI for later that day. Even though these seizures were scary, we actually wanted him to have an episode later during the EEG so we could get some answers.

It was shortly before noon when the nurse told us that Joe would not be able to eat or drink because he would have to be sedated for his MRI. They didn't have an exact time which was frustrating. They also informed us that his EEG was going to be at 2:00. It was around that time that Joe started getting fussy and asking for lunch. We tried our best to distract him with his toys and movies, but he was getting grumpier by the minute. His two nurses came in to take blood for testing and quickly discovered that they were going to need some help because Joe is so strong. I'm not just saying that as a proud mama... I mean this kid is bionic. It was torture to see him held down and screaming while they took blood. They noticed his IV port was kinked, so they had to take that out and re-do it and hooked him up to saline solution. It was hell.

After that was all over, Joe was in quite a mood. He kept screaming and crying for lunch and water. He kept complaining that his penis hurt (from the catheter from the night before) and he was so uncomfortable from holding in his pee. He also kept complaining about his arm hurting. It was then my mom noticed that his arm with the IV was extremely swollen. The IV had burst through his vein and the saline solution was spilling out. This isn't harmful, but it just made him arm look like the Michelin man for the rest of the day. They came to take out the IV, which of course freaked him out.

By that time Joe had hit his limit. He was very tired, hungry, thirsty and afraid. We asked if there was any way we could go down the EEG early because he wanted to sleep so badly. (He wasn't allowed to sleep before the EEG because they wanted him to sleep during the EEG.) No such luck there so we spent the next hour or so comforting Joe, holding him, taking him to the play room and distracting him with walks. It was heartbreaking to see him in such pain and there was nothing I could do. I was so afraid that all of this was going to be useless and we were just torturing him. My mom and Ryan's mom were getting ticked off and asked the nurses if they could get a more definite time for an MRI so maybe he could eat. No one knew anything.

Shortly after the IV debacle... you can see how red his cheeks are and the sweat in his hair.

Finally it was decided that since he hadn't had an episode they were going to do a different kind of EEG. Instead of taking him down to the EEG lab they would bring the equipment up to his room and do a continuous EEG (the one in the lab would have only been about an hour and half or two hours) with a video monitor. Because of the change, they said he could sleep, and while we were waiting for the EEG guy to get upstairs he fell asleep in my arms.

I was hoping that maybe he would be so tired that he would sleep through them putting the electrodes on his head. Of course I was wrong. And of course the guy had to call in a guy to help hold him down. It was 30 minutes of him measuring his head, marking with a marker, "gluing" electrodes on his head, using a little tube shooting out a blast of air to dry the glue, poking a hole in the electrode and then filling the little hole with pink goop that would be a conductor for the electrode. Then the technician wrapped his head with some bandages and put a little hat on. Poor Joe kept screaming "GET ME OUT OF HERE!" and "STOP IT, GUY!" Finally when it was all over Joe didn't try to rip off his new hat. I was so afraid that all the sweating would cause all the electrodes to fall off, and the technician was, too, but everything looked OK when he turned on the machine.

The technician gave us instructions on what to do if he had a seizure.. push a red button, speak into the camera and describe the event, then write it down. Because Joe was hooked up to this machine he couldn't really get out of bed. And because the camera had to be on him at all times, if he even moved to the other end of the bed we had to call a nurse in to move the camera via a computer command. The technician said that once they recorded an event then he could be unhooked. He said he could be hooked up for 5 days. I think my brain shut off for a few minutes so it wouldn't have to process that information.

This shows the bandages he put on after he placed the electrodes

My little gangsta... Thank God he never tried to pull it off! You can see the EEG machine in the background with the camera on him

The electrodes were bundled in this bag, and connected by a 4 foot (or so) cord that attached to the machine

The technician left and the nurse came in with that "I'm so sorry, but you won't like this news" kind of face. She said they still weren't sure when the MRI was going to be, but it would be until at least 9:00 or 10:00 that night. I was like "Oh hell no." We were NOT waiting that long to get him food and water. The EEG guy was 45 minutes late... who knows how late the MRI could be. The nurse completely understood and went to get him some food right away.

With a Lunchable and Sprite he was in a MUCH MUCH better mood. It was still frustrating that he had to be confined to the bed, but we got him some toys and more movies. Ryan and I got some dinner. My best friend's mom and step dad stopped by which was an awesome surprise. They brought some toys and books, which Joe was thrilled about. Soon after they left Ryan's sister and her husband came by to visit Joe. He was still in pain from not being able to pee, but for the most part he was back to his happy self. He was handling it all so well. The nurse also came in to chat (I haven't had the chance to mention how flippin' amazing the nurses were!) and she assured me that Joe would NOT be hooked up to the EEG for 5 days. She said he would have an MRI sometime the next day and they would be taken off before then. I could feel the stress and anxiety over that just float off my shoulders! The rest of the evening was low key and relaxing (as relaxing as being in a hospital can be.)

Joe still hadn't had any seizures. I absolutely hated thinking this, but I wanted him to have on while on the EEG. I wanted answers. What had happened the day before with seizing every hour was NOT normal. I was so afraid they'd just send us home with a big question mark hanging over our heads. We got a call from our awesome pediatrician and he assured us that even if he didn't have a visible seizure, they could still pick up an abnormality on the EEG from him resting. I was hoping and praying for answers.

The next day we got them... just somewhat in an unexpected manner.

Joe's Hospital Stay

Last Wednesday was one of the scariest days of my life.

That is when Joe's seizures began.

Those days in the hospital seem like a dream. Everything is fine now, but sometimes I find myself breaking down in tears thinking about some of the events of the past week.

This is what happened.

Last Wednesday was just a normal day. Joe and Sam were being well behaved. We watched our Daniel Tiger and ate breakfast. Joe made the Sign of the Cross while on the potty. Normal (for us) stuff. We have a tiny little step-stool chair that was right against the bottom of the couch. Joe was sitting in it and out of the corner of my eye I saw his arms fly out, and he made a little noise, almost like something startled him. I looked over at him and he was fine. I figured since I didn't fully see it that he was just being a hyper 3 year old.

About an hour later he was standing on a child's chair at the kitchen sink. I turned my back for one second and when I was turning back around I saw him flying backwards. His arms were flung foward. He landed on his back but seemed fine. I was concerned... I felt like something wasn't right, but again, I saw this fall out of the corner of my eye, so I figured maybe he took a step and lost his balance and fell.

I picked him up and sat him in his booster seat at the kitchen table. I turned around and even though I didn't see anything, I heard his little grunt noise again. It sounded like a cross between getting punched in the gut and being surprised. I had heard this noise maybe once or twice in the last two weeks, accompiannied by seeing him have these little spasms... but they were ALWAYS out of the corner of my eye. I bent down to look at Joe. He seemed fine. I asked him if he was OK and all he wanted was his mac and cheese.

Something wasn't right. My mommy senses were tingling. I knew something was off. But my pediatrician doesn't work on Wednesdays and I wanted him to see Joe, not a substitute doctor. I decided I would wait until Thursday to call. I consulted Dr. Google about seizures, but as soon as I read some of the stuff I freaked and closed the computer. I checked his temperature to see if he was possibly having febrile seizures. His temp was normal. I was confused because these weren't the "normal" seizures that I've seen on TV. These were just a few seconds. 

Since Joe was having these spasms and had already fallen off a chair I decided to put on some movies for him so he could sit and relax. I watched him on the couch and for the first time I saw it. It was 2 seconds. His arms flailed out, he made his gasp/grunt noise... and his eyes rolled back into his head. I knew then that something was SERIOUSLY wrong. I was kind of hoping that he was just messing around before, but it was apparent that he was not.

I immediately called Ryan in tears. "Please don't freak out, " I ordered him in between sobs, "but I think Joe is having small seizures." Of course he freaked out. I heard him run out the door and yell to someone, "I have to leave." He called me when he was on his way home and told me to call the pediatrician. I told him I couldn't because I was crying so hard. He asked how Joe was doing. The weird thing was that after these episodes, he was acting totally normal. It was kind of like a DVD skpping for a split second and then resuming play. But as I was talking to Ryan, he seized again. I didn't care what anyone said, I was going to take him to the E.R.

Ryan got home and the first thing Joe did was take his battery-operated ghost light and ask Ryan for new batteries. Ryan had called the pediatrician's office while driving home, but they hadn't called back. I told him to call them again and tell them we didn't know if this was an emergency since Joe was acting normal. They told us to take him to Children's Mercy Hospital right away.

We gathered up some stuff. Joe was walking toward me when all of a sudden it looked like he was possessed. His knees jerked to the left while the rest of his body jerked right and he fell to the floor. He laid there and started to whimper. He knew that something scary had just happened. I scooped him up and we rushed out the door. As we were walking to the van he had another spasm in my arms.

We weren't sure if we should go to the hospital that was closest to us or go to Children's Mercy. We decided that Children's Mercy would be better. We had just been there a couple of weeks prior for Sam's surgery, and Joe loves the "hopittle." In fact when I told him before Ryan got home that we might go to the hospital he started begging to go.

I kept Joe awake while we were driving and recorded him to capture if he had any more spams. He was tired, but remained awake, but with no episodes. We finally got to the E.R. and waited. And waited. And waited. A woman there with her daughter said they had been there for two hours. That didn't alarm me until he started having them in the E.R. That didn't make them pick up the pace quicker, but seeing Joe go back to coloring and walking around the animal-themed E.R. probably didn't help his case! I hovered over him everywhere he went incase he fell down. We called our moms. My mom told me she was on her way from my hometown which was 2 hours away. Ryan's mom was there in like 2 seconds to take care of Sam. My mother in law saw first hand his episodes and I saw the concern in her eyes.

Finally... FINALLY we got into an E.R. room. Right after the nurse left he had another one, so we started keeping track of how often they occured. We spent a few more hours in the E.R. A resident came in and assessed him and witnessed one herself. She started talking about the fact that he used to have reflux as a baby might be causing these spasms in his esophagus and that could be the reason for his episodes. They were going to run some labs and a CT to be sure. When she left I looked at Ryan and said, "This is NOT because of reflux." I don't like it when people have an "I know better than a doctor" attitude, but I just knew this was something in his brain. We caught another episode on Ryan's iPhone. The attending physician came in and he had another big, powerful spasm. It knocked him on his back, so thankfully he was sitting on the bed. He said, "Whoah!" afterward. These spasms were getting stronger, still very brief but it was overcoming him. It was scaring the ever living crap out of me.

The medical staff took a urine sample via catheter (which made the rest of our stay miserable because he wouldn't go to the bathroom the rest of the time there because it stung so bad) and took blood. It was amazing because he didn't scream or cry at all when they took blood and inserted an IV port. I think he was more curious than anything.We took him to get his CT scan and he did NOT like that at all. It was hard to get him to lay still.

A neurology resident came in. He was writing something down when he missed an episode, but they were coming so close together that he witnessed two others for himself. That's when he mentioned myoclonic seizures... short, brief spasms where the arms shoot out. He was definitely going to be admitted.

My mom and mother in law were there keeping us company. Nurses, admissions officers and doctors/residents were coming and going. Joe had requested a picture of a jungle to color and a very nice woman from child life services came in and gave him one and some cars for him and Sam to play with. We spent the rest of the time waiting for a room. He was having these seizures every hour... sometimes only 10 minutes in between. The attending doctor came in and told us there was an abnormality seen on the CT, but that could possibly be from him moving. They were going to do an MRI the next day.

I was scared, tired and confused. Joe never gets sick. He never saw his pediatrician between his 2 year and 3 year well-child check ups. He is always so spunky and full of life. What the heck was causing this?

I felt so completely helpless.

It was around 8:30-9:00 p.m. before we were moved up to a real room. Ryan had gone home to get some stuff and some dinner. My mom stayed with me to help care for Sam. She left soon after Ryan came back. We settled into our room. I snuggled with my baby boy on the bed. His last episode was at 10:00. He was wired so he kept whispering stuff and playing with my hair. It was around 11:00 when he finally drifted to sleep. I cried and cried and cried and hugged my Joe. You'd think that the day's events would have worn me out, but I got about one hour of sleep. I should have gotten more rest because the next day was even worse...

More later.. 

Showing off his IV port in the E.R.

7 Years Ago...

This weekend Ryan went to a friend's wedding out in Colorado. I spent one night by myself with the boys and quickly declared that those women who have husbands who work nights or are deployed or are single mothers are SAINTS. SAINTS, I TELL YOU!

I went to my mom's house for the rest of the weekend and it was nice to have an extra pair of hands to help me out. (And to take Joe when he woke up early so I could sleep in a little bit. Thanks, Mom!) Even though I had help, I really, truly missed Ryan. I didn't get to talk with him much because he was busy with wedding festivities. I was up at 4:00 a.m. on Sunday morning and I couldn't get to sleep. I just felt part of me was missing.

I don't write about Ryan on this blog as much as I should. But our love is hard to put into words. We do not have the perfect marriage. We fight and bicker and annoy the crap out of each other. Still, our relationship rises above all that.

I don't like to say that Ryan is my partner or best friend or soul mate (even though he is all those.) I can't find the right "label" to put on us. We both agree that our main goal in this marriage is to get each other and our children to heaven. This life is only a short time, but heaven (or hell) is foooooooreeeeeeveeerrrrr. But the greatest part of our marriage is that we make the time we have on this earth just so darn wonderful. We have fun, we laugh, we love. We have two boys that are a challenging delight and one saint in heaven praying for us. We struggle financially and are trying to find a place to settle, so we don't have the stability that others have. I know some people question our way of life, and that's OK. We have a love and a faith in God that has carried us through a lot. We have loving families that we have as a model of what really matters in life. We might live in a small house and not have enough money for beach vacations and remodels, but we are far richer in love, family, trust and pure joy than many others I know.

Today marks the 7th anniversary of Ryan and becoming boyfriend and girlfriend. I never knew that night I went to visit Ryan in his dorm that homecoming weekend that I'd walk out being his girlfriend. However, when I walked back to my campus house I knew I had found my future husband. Just like that campus tour guide had said to me two years before this- I found my spouse at Benedictine. Today I look back fondly on those first days of dating- meeting each others families, dreaming about the future and the thrill of holding hands, stealing kisses, and just being together. I definitely look forward to see what the future brings.

"My dearest friend if you don't mind, I'd like to join you by your side. 

Where we can gaze into the stars... and sit together, now and forever. 

For it is plain, as anyone can see. We're simply meant to be." 

-Nightmare Before Christmas

2006

2013

That Bridge

I have a post planned in my head exploring the last ten years of my life. I have moved at LEAST once a year in the last decade. During college I moved multiple times in just one year. I plan on writing more about my thoughts of moving around and finding stability once I get caught up on Downton Abbey. Oh, and after homework and stuff.

But today I wanted to reflect on a place that is very special to me- Atchison, KS. The reason this little town is on my mind today is because the old Amelia Earhart bridge... the old rickety bridge that crossed the Missouri River and into Atchison... was partly demolished today. I saw the video online and I couldn't help but feeling sad.

Moving to Atchison changed my life. I was guilted into visiting the first time. My mom and uncle took me on a campus visit to Benedictine College. I remembering feeling a pull to the campus, especially when the tour guide took us to the river lookout and said many people find their spouses here. The excitement of finding my soul mate inflamed my heart, even though I was seriously dating someone at the time. When I told the guy I was dating about my visit to Atchison and Benedictine he actually encouraged me to go there. He was probably trying to get rid of me because a few months later he ended our relationship, but part of me would also like to think it was the Holy Spirit prompting him to lead me in the right direction. I decided not to go to Benedictine, but the Holy Spirit wasn't done with me yet.

During my "Dark Years" I still made my way back to Atchison. After a very large house party in honor of my birthday, my mom took my best friend and I to Atchison for a haunted trolley tour. Even in my hungover stupor I felt drawn to this small, historical town. Eight months later my mom and I went to Atchison on Mother's Day weekend.

About a month after that Mother's Day trip I felt a pull to leave all that I was comfortable with and move to a town where I knew absolutely no one. That was so unlike me because the majority of the choices I had made was because I wanted to be around my loved ones. But God had different plans for me. I told my mom I wanted to move to Atchison, KS and work to save money to go to nursing school. After the last two years of announcing decisions that seriously disappointed my mom, I was surprised that she was in full support.

So I drove across that bridge to my new life. I found a small studio apartment that happened to be under an awesome newlywed couple who introduced me to Benedictine. I spent four years of my life driving back and forth on that bridge. I crossed that bridge to go my Uncle Dave's bedside as he was dying of cancer. I passed back on that bridge with the seeds of reversion back to the Catholic Church planted in my heart. I crossed that bridge to drive home to tell my mom I had been accepted to Benedictine College. I crossed that bridge with my new boyfriend and his brother to meet his mom, dad and sister... to the family I would be married into and to call my own.  I crossed that bridge a new college graduate, a huge accomplishment for me since I had basically flunked out of two colleges before Benedictine.

I watched the bridge as the flood waters of the Missouri crept higher and higher up its pillars. I watched the bridge as planes swooped back and forth and fireworks boomed in the sky at the Amelia Earhart festival in the summers. 

The bridge was always like a mother welcoming her kids back home. It was always a welcome sight after driving an hour and a half or after driving through a treacherous blizzard. Ryan and I have been back to Atchison only a couple of times since I graduated in 2009. The campus has grown, the studio apartment houses I lived in have new tenants, but the bridge was always the same. Now it won't be there anymore.

This is about more than a rickety old bridge. I have experienced so many changes in these last 10 years and some of the most exciting and scary life events happened when I crossed that bridge to Atchison, KS. I will forever be thankful to that bridge that carried me into some of the best years of my life.

7 Quick Takes Friday: My New Show Obession and Some Other Stuff

1.

This week I've really been slacking on my blog reading and commenting. Perhaps it is because I've been staying up WAY too late for my own good.

I blame my mother. She started watching Downton Abbey and since I know so many people who love the show I thought I'd give it a try. I didn't think I would like it because I always thought it looked rather boring.

I was wrong.

I LOOOOOOOOOOOOOOVE THIS SHOW!

It's such a breath of fresh air after watching nitty gritty shows like The Walking Dead and Sons of Anarchy. And watching the show is like candy corn... I can't stop at just one episode. The only bummer is that Ryan has decided not to watch it with me. We always watch our shows together (some couples hike together, some couples go to wine tastings... we watch TV) but he chose to skip out on this show. So now I watch it on my computer after everyone has gone to bed. So that makes mama very tired in the morning!

I am about to finish the 2nd season. I'm already dreading the 3rd season because I know of a HUGE spoiler!

2.

Sam had his first occupational therapy session yesterday for his eating issues. It went so well! The therapist is so nice and I can tell she is really good at her job! She is amazingly pro-breastfeeding and she made me feel better about the whole situation. I've always felt kind of guilty because I've always felt there is something more I could have done to get him to eat solids, but she assured me it was nothing I did and that I have done a great job by nourishing him with my body.

Sam was really good during the session. The therapist was amazed at how social he was. She said some kids don't even want her in the room. This will be a weekly thing and I am actually looking forward to see how this all goes!

3.

I read an article on Buzzfeed called 14 Books that Traumatized You As a Child. I haven't read some of the books on the list, but some of them brought back some memories! Some of my favorite books growing up was Babysitter's Club, Goosebumps, and Little House on the Prairie. I do remember being freaked out by Scary Stories to Tell in the Dark and In a Dark, Dark Room.

What were some of your favorite books growing up?

4.

Yesterday we went to my in laws and Joe played with some of the neighborhood kids. He had such a blast running around and wrestling with them. I've always been kind of worried about Joe's social skills since I stay at home with him and never go to play groups and such. But this kid is definitely not shy! I still think it would be good to get him into preschool so he can learn how to properly play with other kids (meaning: LEARN TO SHARE!!!!) and we might put him in preschool in January. He has to be potty trained but also go with out help and we aren't at that stage yet.

5.

Speaking of potty training I have a huge long blog written about our experience with potty training. I just haven't gotten around to editing and posting. I have a lot of posts planned but no energy to write them. I still don't know how you mamas with lots of littles find the time to blog!

6.

Did you hear about the chaos at the Capitol yesterday? When I first heard the news about someone crashing into barricades and leading police on a chase I just figured it was some political nut job or someone out to seriously hurt someone since the police gunned the person down. Today I learned that it was a mother possibly suffering from postpartum depression. She had her daughter in the car with her when she was killed. How incredibly sad. I don't think people realize just how dangerous postpartum depression can be. It isn't just hormones and stress and tiredness. Please pray for this poor woman's soul and her little girl who is without her mother.

7.

I was looking at this picture that was taken of our family a few weeks ago. Joe looks so grown up to me. Sometimes I'll see him sitting on the couch or at the dinner table and I just get a little shocked at how fast he is growing. Maybe it's because I have Sam around to compare him to, but Joe just seems so.... old! I can have conversations with him and he is potty trained and he can run around the playground equipment with ease. I swear it was just yesterday that I was totally helicoptering around him on the jungle gym fearing he would jump to his death! 

Have a good weekend!  Go to Jen's for more Quick Takes!