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.