Sunday, February 19, 2017

Megatron: Medical Update

I figured I'm long overdue for a medical update on my little munchkin also.  He's been doing really well.  He's 3.5 now and still hanging out around the 25th percentile for his height and weight.  So he's not a gentle giant, but he's certainly not an itty bitty little guy anymore either.  In fact, he's a hair over 38" tall now because he was able to ride the Seven Dwarfs Mine Train on a recent trip to Walt Disney World.  Yup, it's time to start comparing his height to the height stick at amusement parks instead of constantly at a doctor's office.

His liver had been super happy for the last year+.  His immunosuppressant level has been kept really low and his body is tolerating that well.  That means he stays pretty healthy.  He's had some colds that take him awhile to shake but he eventually got over them.  He's had some lingering skin issues that we dealt with over the summer.  It clears up and then comes back.  We starts meds, it clears up and then comes back.  It's been pretty frustrating.  Especially since he ended up with a skin infection because of all the broken skin.  He's had another flare up the last 2 weeks so we may have to make another trip to the dermatologist.  So far the culprit seems to be that he's allergic to his own bodily fluids so he licks his lips/around his mouth, the skin breaks down and then makes it a prime location for an infection to go wild.  He also has eczema all over his arms and legs.  We can't seem to figure out what's causing that in the winter.  In the summer, we assumed it was heat/sweat.  But in the winter, we aren't so sure.  I think it's another food allergy we just can't seem to pinpoint.

Speaking of food allergies, that's still ongoing as well.  He was diagnosed with eosinophilic gastroenteritis (EG) in December 2014 and we eliminated the top 8 allergens (egg, wheat, dairy, soy, tree nuts, peanuts, fish and shellfish, plus banana because it showed up on a skin test).  Over the last 2 years, we've been attempting to reintroduce the foods one at a time until we figured out what exactly he can and can't eat.  It hasn't been quite that straight forward though.  Egg was an immediate fail a little over a year ago (vomiting on the 3rd bite).  Dairy has been considered a pass because other than the occasional eczema, he hasn't had any GI symptoms since adding dairy.  My instinct wasn't convinced he passed but we've left it in his diet.  We also attempted wheat but he failed that on day 10.  The results were a little cloudy though because we also introduced soy in that 10 day window.  In hindsight, that was a mistake.  We recently tried soy again and it seems to be a pass as well.  So in 2 years, we've only added back dairy and soy.  Last month we found a new allergist to try to come up with a much more clear and concise plan for adding back foods.  The new doctor ran new blood tests on all the foods to see if anything had changed from the last allergy panel 2 years ago.

That's when we got the news we weren't expecting.  I think because Megatron has been so stable the last year, I've finally let my "PTSD liver mom" guard down a bit.  Without realizing it, I had my hopes way up for the blood test results.  I was so certain that the results would look good and we could maybe face a future with just an egg and wheat allergy.  So I took it very hard when the results came back the way they did.  His blood reactions to all the foods looked worse than they did at diagnosis, with the exception of seafood.  The one food group no one in our house eats (remember that The Pilot is 100% vegetarian and I'm still maybe 75% vegetarian but I've never liked seafood).  I held back tears as the allergist went over each food with me over the phone.

Basically, we will NOT be testing any nuts or wheat for at least another year, when they will check is lab work again.  Egg is still off the table but that was a given since we had already witnessed how quickly he reacted to eating egg.  That made me so sad.  I really thought we might be able to try peanut butter.  He ate it right after his 1st birthday but hasn't had any since.

On paper, he looks allergic to dairy.  But he's been eating dairy in small amounts and seems to be tolerating it.  The allergist felt my instinct was correct, that his body is reacting slightly, but because he doesn't drink dairy products (he still drinks a medical formula at meals), his body is somehow tolerating the small amounts of cheese he is eating.  And now that he can talk, he's been able to tell us a couple times when his throat is "itchy" after drinking chocolate milk or eating some kind of dairy heavy food so we've started to avoid things like that.  The doctor didn't feel like we needed to take dairy back out of his diet but did agree that if we "tipped the scales" and started letting him drink cow's milk, that his GI symptoms would likely return.  We have no desire to do that, especially since he's thriving on the formula.  Soy also looked elevated on his lab work but not as much as dairy so she agreed that we could keep soy in his diet for now too.

The other bummer is that she wants to see another endoscopy.  There is no way to know what is really going on with his EG without seeing his GI tract.  We won't schedule that until after viral season (we avoid the hospital during viral season as much as possible because of his compromised immune system) so I have some time to mentally prepare.  It won't be fun.  He won't be allowed to eat for 8 hours and then coming out of anesthesia was hard on him last time.  He was one angry little monkey.  It was emotionally draining.  He doesn't remember the last time, but I do.  Sigh.  Anyways, if it looks worse, we may have to take soy back out of his diet.  The last endoscopy was done after about 6 weeks on dairy and she felt if dairy was causing trouble, it would have looked worse during that scope and it didn't.  Plus he's still GI symptom-free.

That leaves banana.  I save it for last because that is the one food that Megatron requests now.  He knows he can't eat the other foods but he's said several times "mama, when I'm a big kid, I can eat banana." Talk about heart breaking.  How do you explain that to a 3.5 year old??  There is no manual for this.  During the first appointment with the new allergist, he asked her (and the nurse) if he could eat banana.  This is the first time be's been verbalizing his food desires.  His lab work was elevated from a couple years ago but wasn't as high as all the other foods.  Also, banana is more likely to cause an allergic (immediate) reaction than an eosinophilic (delayed, internal) reaction.  Because of these factors, she is willing to do further testing.  So the plan is to schedule an appointment to take Megatron to the allergy clinic and do a skin test for banana first.  If it looks ok, then he can try a piece of banana and we will wait to see what happens.  He's smart enough and observant enough to know that this is the plan.  I haven't scheduled the appointment yet (we were on vacation and then I had the flu...and I've been procrastinating on all of it because I'm afraid of the results.  You know, if I'm going to be really honest about it.).

So I'm really disappointed with all the allergy news.  I had really hoped we had already found his allergens and that we could add the other foods back and we could move on.  But that doesn't appear to be the case.  This little guy still has to face daily challenges.  Well, if I'm going to be real, I'm the one facing the challenges.  He doesn't know that he's any different yet.  I'm the one still trying to figure out how to cook safe meals for him.  We are the ones that sacrifice meals in restaurants because most places don't have safe options for him.  The challenge is on us to teach him what he can't eat, how to recognize it and say "no, thank you" when offered food he doesn't know what is in it.  We've been practicing that at home but it didn't work yet in the "real world" recently.  He managed to get a banana slice at "school."  He put it in his mouth before the teachers noticed and had him spit it back out.  He's still learning.    And with so much talk about banana lately, he probably either thought it was ok because an adult gave it to him or he didn't recognize it because it wasn't in the peel.

I've tried to keep all this in perspective. He's healthy.  He's growing.  He's not in liver failure.  It's hard to do that sometimes though because it would be nice if there wasn't always a medical challenge waiting for us around the bend with this little guy.  I do my best though.

How has it been so long??

The blog has definitely fallen to the back burner.  There just aren't enough hours in the day.

I've been trying to create a spreadsheet of the races I've done so I've been going back through my blog.  It's getting harder and harder to remember just how many races I've done now so its time to start keeping a list!  I'm not even going to attempt to try to figure out all the shorter distance races from 10 years ago but I'm at least trying to fill in the half and full marathons.  Full marathons was easy to fill in since there have only been 4 but the half marathons is proving to be a little tricky.  I know I've done 15 half marathons now based on going back through old blog posts, etc.  But I'm missing one or two.  I know I did them because I'm pretty sure my count is acurate, I just can't figure out which races I'm missing on my list.  They were the early ones, so I'm trying to recall back to 2005-2006.  Just a few life events have happened since then....

Anyways, I'm trying to catch up on some race blogs posts so I have some record of the races. Especially the races that I ran as someone else.  Not that I've gone that a couple times...but if I had, it would make it very hard to look up race results.  Sigh.  So I'm hoping to get a few posts up show that I haven't completely disappeared.

Adams County Run with the Amish

Better late than never??

I ran the Adams County Run with the Amish 1/2 Marathon on September 24, 2016.  It was 1/2 marathon #14. I was really looking forward to traveling with my friends (about 2 hours southwest of Columbus) and getting a 24 hour "vacation" from real life.  Something doesn't quite sound right about that when I consider running a 1/2 marathon a vacation.  But when you have a 3 year old at home who never stops talking, getting to spend time with grown ups is amazing, no matter what we may be doing during that time!

I knew this race was going to be a challenge just based on the location.  Southwestern Ohio has hills. Lots of hills.  Especially when you consider just how flat Central Ohio is.  It's hard to get much hill work in during training in Columbus.  Having said that though, I had a plan to train on the available hills.  But that plan just didn't work out how I had hoped.  So while I went into this race with adequate distance training, I knew I wasn't fully prepared for the hills.

Testing out the Amish furniture
That ended up being an understatement.  This was by far the most difficult race course I had ever done.  The 1/2 I ran while pregnant might have been slightly more difficult since I had the first trimester fatigue to content with, this one kicked my butt just as much.  I realized quickly that I couldn't run down hardly any of the hills.  There were too steep and it hurt my knee with each steps.  So I ended up running as much as I could but then walking down every hill.  Not the best strategy but that's what I had to do to keep going.

The night before the race, we all met up at a local Amish bakery/furniture store where the Amish had the most amazing pasta dinner I've ever had.  We ate in a barn and it was bare bones but it was by far the best pasta I've ever had in my life (probably not hard to beat store bought.  I doubt I've ever had homemade pasta before and this was obviously homemade).  I was just enjoying being in the company of my friends and none of them made me cut up their food and they didn't throw noodles at me.  After dinner we made our way to a state park about 30 minutes away.  We ended up renting several cabins for the night.  Normally I would be in bed early the night before the race but we ended up staying up way too late but had a blast.  Have I mentioned how excited I was to have grown up time??

The next morning we were up early to carpool back to the race start.  I loved how basic everything was.  When you've done as many races as we have, you don't always need fireworks and a a live band at the start.  So we were impressed with the hand drawn course map and the horses hanging out in the pasture across from the race start.  It is a beautiful part of our state, that's for sure!

Three of us started together but by about mile 6 or so, we all had split up.  My friend Kim was race walking and was easily out walking me on the downhills.  Given how small the race was, I had a feeling she could place in the race walk division if she stopped waiting for me so I told her to leave me behind.  I knew I would finish.  I felt fine, the course was just hard.  Plus there was also a full marathon so that meant I had plenty of time to finish the half.
Hills for days
The race was fully supported by the Amish Community in the area so they organized all of the water stops.  The water stops were great and there were plenty of them, which surprised me because it was such a small race (fewer than 500 people to my knowledge).  There wasn't the yelling and cheering I'm used to at the big city races but it was a nice change of pace (no pun intended).  I really enjoyed the first 1/2 of the race.  The hills were a challenge but manageable.  It was right about the rime I was thinking "this isn't so bad" that we hit an uphill that I was convinced was 3 miles long.  In reality it was probably less than a mile but it was so long and so steep/  I had to take a break when I finally got to the top...

The second 1/2 of the course really felt like one hill after another.  I still felt ok other than being tired (spending time with friends was still worth the extra late bed time, no matter how tired I was!).  At one point during the race, we saw some friends driving the course.  They either weren't racing due to injury or did the 5k so they came out to check on the rest of us.  It was a little strange to be in the middle of farm country and then a mini van full of friends comes driving around the bend honking the horn and yelling out the windows.  It was perfect though!  Towards the end, there is a short out and back section of the course which was nice because I got to see some of my friends that were ahead of me.  Seeing familiar faces goes a long way when you really want to be finished!

Even more friends were lined up in the last mile and by that point, I was walking more than running. Everything hurt.  Seeing them was another welcome sight.  They got me up one last hill and my friend Sarah crossed the finish line with me.  It felt like I had been out there for 3 days but I somehow managed to finish under 3 hours.  2:56:50 was my final time.  Not my worst!  Haha.

The finish line is at the same Amish Bakery that the pasta party was and when you have a bunch of hungry marathoners finishing a race, you load up on baked goods.  Oops.  I probably didn't burn that many calories. b The race "medal" was realy unique also.  It was a wooden "basket" made by a local Amish person. Their name was on the back even!

It was such a fun trip!  Unfortunately they aren't hosting the race again next year.  I'm not sure if I would do it again but I'm sure if all my friends were in, I'd go along with it.  It wasn't THAT terrible.  Ha!

Saturday, June 25, 2016

Megatron Update: Fun Stuff

I did a medical update on Megatron but he's also been having lots of fun being a normal kid lately too!

Last month we went on our first post-transplant family vacation.  The last time the three of us went anywhere other than Pittsburgh for a medical appointment was when Megatron was just 3 months old and we went to Disney World.  We used The Pilot's flight "benefits" and flew standby to Denver.  It was an adventure to say the least but we made it there and back and aren't too traumatized.  We had so much fun!  It was a huge undertaking to make arrangements to have all of this food either shipped in advanced, packed in a cooler that we carried onto the plane or purchased by my friend, Lauren, who we stayed with in Denver.  Megatron did great despite the time difference and being all off schedule.

Airplanes have the same effect on him that cars do!
We don't travel light.
Denver Children's Museum.
We all had a blast at the museum.
Red Rocks
We also had another zoo adventure with the organization, A Kid Again. This time he was big enough to ride a couple of the kiddie rides at the zoo, which were free for the A Kid Again families to ride. He loved it!  I on the other hand was a little motion sick.  I can't spin in a circle anymore! Usually Megatron is asleep by 8 pm but for the special night at the zoo, he was still going strong at 9! As we were heading towards the exit though, he had the opportunity to pick out a prize but he didn't want to get out of the stroller.  He just whispered that he wanted mama to pick it out for him.  He finally hit a wall and was worn out! He plays hard and then sleeps hard!
If the African lion looked hot, you can probably imagine how hot we were.
Checking out the sting rays.
Feeding a giraffe.

Just the fact that it's summer finally has added some fun to our days hanging out at home plus we are getting out and about more than ever.  Despite being so heat sensitive, we try to get outside as much as we can.  He sure sleeps better on the days he gets some outside play time!

Our neighbor had put an old, beat up Cozy Coupe on the curb several weeks ago and since it still rolled, I snatched it.  It had marker all over it and looked like it had been dragged around the concrete on its side so The Pilot used his model airplane painting stills and gave the Cozy Coupe a new look with a can of spray pain. We now have an Army "jeep." 

Playing in a sprinkler for the first time.
Chillaxin' at his cousin's lacrosse game.
Exploring a new park with one of his cousins.

Not so sure about the wobbly bridge.
Taking his art work very seriously....
Or not.
Family time!
I think the skinned knees are here to stay for the summer!
While Megatron is s typical, moody, irrational almost 3-year-old, it's never lost on me when he gets to experience something for the first time.  We weren't guaranteed any of these moments with him so even something as seemingly small as running through a sprinkler, it actually a huge deal in my heart.  It's fun watching things through the eyes of someone experiencing everything for the first time.

Thursday, June 9, 2016

Megatron Update: Medical Stuff

Despite Megatron being healthier than he's ever been, things have been busy lately in terms of his medical care and development and I haven't really talked about that much on the blog.

Last month we had his annual exam in Pittsburgh with his transplant team.  All but one of the surgeons and even our usual nurse coordinator were all out at a conference (which they didn't find out about until after we made all of our plans, including The Pilot requesting vacation time). But we still got to see some familiar faces and there were all super excited to see how big Elias has gotten and just how well he's been doing.  His lab work has been really stable, even as they lowered his immunosuppressant.  It's now just a hair over "undetectable."  Normally they like to have the level a little higher but his liver and kidneys are happy and that is the priority.  His EBV level has been creeping up again (which is always a concern because if left untreated, it can lead to a type of cancer) but as soon as they lowered his immunosuppressant, the EBV came back down.  Up until now, it's always seemed to be a little bit of calculated risk.  Keep the immunosuppressant as low as possible without seeing the liver numbers go up.   But now, they have something really exciting (for families like ours anyways) to help determine risk.

Right after the transplant, we enrolled Megatron in a research study that one of his surgeons was doing.The goal was to create a blood test that would determine the "level" of a post transplant patient's immune system.  It essentially tells them which patients are at higher risk for rejection.  So Megatron was part of that research and recently, the test has been approved for use!  So when we were in Pittsburgh, they drew what looked like a gallon of blood from him.  Some for the various research studies, some more his routine monthly lab work, some for annual lab work and then some for the new test.  A few days after we came home, we got the results of the new test.  Megatron is now considered low risk for rejection and that means he can continue to stay on the low dose of immunosuppressant as long as his liver stays happy.  They also ran a more detailed test on his kidney function and that looked great too.  His immunosuppressant is very hard on the kidneys (as in many patients eventually need a kidney transplant) but his seem to me trucking along just like his liver.  Nothing but great news!

The nurse practitioner commended The Pilot and I for following the post-transplant "rules" as well as taking advantage of the resources available to us to make sure Megatron is catching up (speech, occupational and physical therapy, nutrition, etc.)
was doing.
Speaking of nutrition, it's been over a year since we met with a nutritionist about Megatron's diet.  When we first did the top-8 elimination diet, his local GI doctor wanted to make sure we were still meeting all of his nutritional needs.  There was certainly a learning curve but we were managing.  Megatron has grown A LOT since then so it was time to take a look at what he's been eating and compare it to his current nutritional needs.  I kept a food diary for a week and gave it to the GI clinic.  I was so excited when the nutritionist called me and she was excited with how well he's eating.  We are RIGHT on target with meeting all of his nutritional needs.  Even with protein!  Even though we had to abandon a vegetarian diet for him when he was diagnosed with eosinophilic gastroenteritis, he's still only getting animal meat a handful of times over the course of a couple weeks.  But lentils and quinoa are frequent staples in our house and those provide lots of protein and iron so we are meeting those needs through plant-based foods.  The nutritionist was really impressed at the variety of foods we are offering and the fact that Megatron eats really really well both in terms of quantity and the food itself.  He's not all that picky and there really aren't any vegetables that kid won't eat.  She said it was refreshing to see he hardly eats any processed food.  That phone call really made all of the hard work worth it.  Because as a type-A mom, I'm always worried that he's eating enough of the right foods.  I mean, it's obvious that something is working because he's growing but with such a restricted diet, it's hard to know if we really are feeding him what's best.  But she assured me that we are doing great.

We also got another pat on the back from our local school district.  Our state's early intervention program will end next month when he turns 3 (3!!!! Start the crying now!) so the school district is now preparing to take over.  They recently did a multi-step evaluation process with us and we just had our meeting to discuss the results.  Basically they did find him to have a speech delay and when the school year starts in the fall, they will offer him a weekly speech therapy session at our home elementary school.  Which is great because it will get him used to the school and give us a chance to get to know the school administrators and therapist so when kindergarten rolls around, the transition will be easier.  The great news about the whole evaluation process was that they do not feel his delays will effect his ability to learn in a traditional classroom and he doesn't need their special needs preschool.  While he did score below average in a few areas (specifically expressive language/speech and some gross motor skills), there is no reason to believe he won't be caught up by kindergarten.  We weren't particularly worried about this, but our goal has always been to just take advantage of the resources available to us to help him catch up.  And honestly, this kid loves going to the hospital's outpatient facilities for things like labs and speech and then going to the preschool for the evaluation.  He is really cooperative when it comes to interacting with adults (other than with family, with whom he can be a typical pain in the @$$ toddler) and they always make it fun. Plus, he doesn't know any different.  The school psychologist mentioned it a couple times that he was very sweet and empathetic, a trait that many toddlers simply haven't learned yet.  Another thing that didn't exactly surprise us but was nice to hear from a professional, was that some of his receptive language and cognitive skills scored him into the 4-year-old category.  Meaning our little man is very smart, he just has a hard time getting the words out of his mouth to express those smarts.

I can't even explain how good that feels.  Especially since before transplant, there was a real fear that the toxins building up in his body because his liver wasn't working were starting to effect his brain, which is very common in patients in liver failure.  It was a real enough fear that Megatron has had a head CT and MRI.  But based on what the school evaluation told us, little dude is smart and his body is just taking it's time to repair itself and catch up from his traumatic first year of life.  They also pointed out that we have done everything right when it comes to helping him catch up but also making sure we are exposing him to books and talking about letters and numbers all the time. So even though most days it feel like I have no idea what I'm doing, the professionals seem to think I'm doing just fine by him. Talk about a sigh of relief!

Megatron has still be getting some somewhat intermittent private speech therapy as well as occupational therapy through the early intervention program.  The progress has been somewhat slow but it's there.  And it's been an absolute blast interacting with him now that he's speaking more and more.  Don't get me wrong, there are lots of moments when I have no clue what he's trying to say but I'm usually his translator and can figure out what he's talking about.  He's also getting more and more confident when it comes to navigating the world.  He's slowly figuring out how to run and climb.  He's just doing everything in his own time.  I sometimes get a little anxious/impatient because as his mom, I naturally want him to fit in and be able to keep up with kids his own age but I also don't want to rush him.  I missed out on that sweet and fast newborn/baby stage because he was so sick so I'm trying to enjoy this time that he's still little and not quite up to full speed like other kids his age.  I don't want to miss a thing because I already missed out on too much!

Saturday, June 4, 2016

My friends are all doing it

They aren't exactly jumping off a bridge but close enough. They are all signed up for a local triathlon and when the opportunity presented itself to register for a fraction of the current price, I figured, why not?!  I mean, I'm already training to swim the 1/2 Ironman relay and I'm training for a September 1/2 marathon, so why not add in some cycling and do a triathlon this summer.  Sounds logical.

About as logical as me being the Ironman relay swimmer.  I can't exactly swim and ride my bike with Megatron.  Which means I have to 1) get creative with my training and 2) be very flexible with when and where I train.  There are the 5:30 am swim practices.  I still randomly run on the treadmill at 9 pm.  My mom has watched the rugrat while I went for a 25 mile bike ride.  Whatever it takes.  The downside to the cheap registration fee (it was transferred from another athlete who can't compete now), is that it's for an Olympic distance tri.  I've only done that distance once before and it was SIX years ago.  Yowza.  The sprint distance might have been a little more realistic but go big or go home, right?

My goal is to finish.  I'm not even going to attempt to try to finish faster than I did 6 years ago.  It's not unrealistic to do that just based on my weight loss and current fitness level but I know full well that I'm not training exactly how I ideally would to do my very best.  My life is nothing like what it was for that first one (I wasn't even married yet!) and now Megatron comes first 95% of the time.  I have to squeeze my training into that 5% of time.  :) 

I've been having fun though.  I've been knocking out the 1/2 Ironman swim distance (1.2 miles) roughly every week or so, so I know I can finish.  I recently did a 25 mile bike ride.  It was slow and steady but it wasn't awful (especially since its only my second ride in FOUR years).  While I was still slow, I noticed that I was able to stay in a harder for nearly the entire ride.  I have 3 gears in the front and four years ago I was always hanging out in the middle ring.  This last ride, I stayed in the big ring except for a big hill.  My legs are certainly stronger than they were back then!  Hopefully I can get in some more decent rides to work on increasing my pace just a little.

Obviously I can now run the 6.2 mile run at the end.  It will feel like running on Jello for the first 1/2 mile but I know what to expect now.  As long as I leave some gas left in the tank after the ride, I should be able to run the bulk of the the 10k.  Six years ago, I was only just starting to run at all so it was still very difficult just to run, let alone after swimming and cycling, so there was a lot of walking going on.  So I would hope to have a stronger run this time around.  Honestly, my biggest concern is the weather.  The race is in 6 weeks.  You know, mid-July.  Heat and humidity have always been my nemesis so we shall see.  That is out of my control so I'll just do what I can! 

I'm really looking forward to the race though.  It's far enough away that I'm not nervous yet but it's soon enough to be excited. I'm also enjoying the break from nothing but running.  I also like that the swim trainings are on week mornings.  It's much more likely that The Pilot is off on a week day than a weekend so I've enjoyed working out during the week without having to push Megatron or have the baby monitor turned all the way up.  My training perspective sure has changed over the years!

Friday, April 8, 2016

Crafty Lady

Anyone who knows me already knows this but I am a total "Pinterest mom."  You know, that mom that makes DIY toys for my kid and hand makes gifts and party decorations.   I mean, I made him an elevator out of a cardboard box last year (with The Pilot's help).  I'm secure enough to own up to all of my "labels," including Pinterest mom.  I don't apologize for it because I was a crafty lady before I had Megatron.  I've always been creative.  Opening a new box of Crayola crayons was pure heaven as a kid. Who am I kidding?  I still love a brand new box of crayons. I read this article that put into words who I feel about being a "Pinterest mom." I didn't make 20 feet of paper chains for Megatron's 1st birthday party because I thought he would like it or remember how festive his party was.  I made them because I like to do that kind of thing.  I don't think anything of it when I go to a party and someone hangs up store bought party decorations. I'm not judging anyone for not making random crafty things like I do because not everyone is crafty or has the desire to be.

Before I started my journey as a stay at home mom, I was an event planner.  I frequently used my crafty skills to add personal touches to the events that I planned.  I frequently would bring projects home with me at the end of the day so I could use my craft supplies to add some flair to board member gift bags or vendor thank you cards.  I didn't have to, I wanted to because that's just who I am.  So now that I don't have a professional outlet, I craft at home for my kid.  I give handmade gifts.  I make stuff just for myself.  I make stuff because it gives me an outlet from the monotony of staying home and raising an extra special kid.  Time spent crafting is "me" time.  It's no different than when I go for a run really.  Running and crafting helps clear my head and makes me feel whole again.  It's no secret that I've had a hard time adjusting to staying home with Megatron.  It wasn't part of the plan and I knew I wouldn't be completely fulfilled "just" staying home with him.  I'm making the most of it because I know it's the right thing, right now.  I'm finding a much better balance of getting "me" time and making sure Megatron isn't running with scissors and is happy and healthy.  That's because I'm making more time for running and crafting.

So now to where I do that crafty stuff...

When we first walked through the house we ended up buying four years ago, there was one bedroom that basically sold the house for me.  We liked the first floor but when we walked up the stairs, there was a bed room that screamed "craft room!"  Yes, it really did.  If you are at all creative, you know what I mean.  At my condo that I owned when I met The Pilot, I had a craft space but it was in the basement without any windows. Not very inspiring.  This house had an extra bedroom upstairs with a big, east facing window.  We knew we wouldn't need it as a bedroom and The Pilot was happy because I was happy (smart man!) so we bought the house and bam, I had my own craft space with a window!  The craft room is also my "Disney" room where I hide all my treasures so people don't walk into our living room and feel like they are in the middle of a Magic Kingdom gift shop.  Not that there is anything wrong with that, but I did marry someone who simply tolerates my love of Disney.  And if he let me have my Disney collection all over the house, I would have to agree to have model airplanes all over the house.  Marriage is all about compromise, is it not?  So my Disney collection decorates the walls and shelves of the craft room but the furniture itself was a random assortment of college particle board shelving and hand-me-downs.  It was all mostly functional but it didn't feel like a grown up, inspiring space.

In the fall, The Pilot and I borrowed a larger car and made a (kid-free) trip to Ikea (currently, the closest store is about 90 minutes away so it's a production to go there).  I was hoping to find a new craft table.  I figured I would end up with an inexpensive desk and that would be that.  Until we got to the kitchen section of the store and I saw a giant kitchen island.  I fell in love with it.  The Pilot knew it.  We went back to the desks and I sat at probably a dozen different desks but I kept thinking about that island.  It cost more than we had planned to spend and I was about ready to settle for a simple desk when The Pilot gave the thumbs up.  It was going to be both my Christmas and birthday present....for the next 3 years but I was so pumped.  That bad boy went home with us.  It took us awhile to put it together because it was a 2-person job and finding free time when The Pilot and I are both home was a challenge.  So we finally got it put together.  What we didn't realize when we bought it was that it was an unfinished butcher block work surface so it would need sealed first.  OK, no biggie.  Except once we got the sealant and read the instructions, we realized it was a couple months long process.  What??  I wanted to do crafty stuff NOW!  But if we spent that much on the table, it needed to be done right so the surface didn't warp. So every couple days, I lightly sanded and added another coat of sealant. Until finally, FINALLY! The table is assembled, sealed and ready for crafting!
Those bins under the table hold all my fabric.  The bottom shelf has all of Megatron's "quiet" activities.  The things we take on car tides, long doctor visits/procedures and restaurants.  :)

I decided that a new table meant the entire room needed a mini make over.  One big thing that this bright room last lacking was lighting.  Even though the window is great, I often have to do my crafting once Megatron is down for the night.  I've been using 2 lamps but they cast all kinds of shadows so it wasn't ideal.  Luckily I come from a family of electricians.  My uncle and cousin came over and ran electricity through the attic and installed a ceiling light for me!  I am ridiculously excited about this!

I made a new window treatment because the old one was left over from the condo and really didn't do anything to jazz up the room so I bought a 1/2 yard of fabric and made a simple valance.  I also wanted to tie in the fact that it was a creative space and not just a Disney room with a craft table.  So I customized some cardboard letters from Hobby Lobby to spell the word 'Create' on the wall.  I used fabric scraps, buttons, washi tape, paint and paper to make each letter different. 

The closet is full of my craft supplies but was a little out of control so I purged a lot (that's a post for another day!) and re-used some storage containers from other parts of the house to get a little more organized.  I tend to hoard anything that I think I can make something out of so my stash gets out of control easily.  I had an entire box of scraps of ribbon...but you'd be surprised how often I end up using random pieces of ribbon!  So I wrapped the scraps around craft sticks, pinned them and placed them in a jar on the table. Now it's a pretty way to keep them organized.
 Any respectable type A human owns a label maker.  These are more for me but one can hope that clear, labeled bins will one day help Megatron put his own crap away.  One can hope....
If you are crafting with kids, I highly recommend a vinyl table cloth.  I bought one at Target last year on clearance after Easter and I cover our kitchen table whenever Megatron is painting (which I still do with him strapped into his booster seat.  I am type A after all, I can't have complete chaos when paint is involved.)

This over the door organizer was actually a wedding gift.  We got a gift certificate to the Container Store and I found this. It's  designed for a pantry but it's perfect for holding paints and glue!

For the most part, I like my supplies to be out of sight but there are certain things I like to have at my reach at all times (scissors, tape, tape measure, pens, my nicer paint brushes).  I found a tin to keep those things in on the table also.  It also keeps those things out of Megatron's reach (for now at least).

During a previous Ikea trip, I had fallen for a little metal cart but at the time, I couldn't think of a reason I needed it or a place to put it.  But this trip though, I got sucked in and realized it would be a perfect addition to the craft room.  I like to have access to supplies I need but don't want them on my actual work space so this teal cart is perfect.  The lower shelves have things for Megatron and I left the top shelf empty to use while I'm working on a project.

When we went to Ikea, we also wanted to find a small table and chair for Megatron.  I wanted him to have a space to sit at in the craft room too.  I had this fantasy that we could both be in the room, crafting together.  I wasn't sure if he would be into it but I figured a little table would have decent re-sale value if he didn't use it much. I'm soooo glad we did find a little table because it does work!  Megatron does sit and stand at the table and work on crafts and other "quiet" activities. Not for long but long enough for me to get organized for my next project.

Sitting at his table working on fine motor skills...pushing pipe cleaners through a dollar store colander.
We put his table together first so for awhile there was a mostly empty room with a tiny little table in it.  It was nice to put a few things on the table him though and work on the rest of the room.

So that's a good portion of the room.  The other side of the room is still a bit of a mess.  It's been acting as my purging staging area.  Anyone who has read The Life Changing Magic of Tidying Up will understand, but like I said, that's a post for another day. We also have plans for one more Ikea purchase to transform the space from "college mismatch" to "a creative grown up works here."  Gotta keep saving the pennies for that though.