Consider this a statement....and a story.

Whew. Just when we think we have a handle on life; BAM. More lemons get tossed our way....good thing I can drink a gallon of lemonade daily otherwise I'd be up to my premature wrinkles and graying hair in citrus fruit. I don't mind challenges; I welcome them so really I can't complain too much. It's just another walk in the park for this momma :)

Bruce is a trooper. He is a day shy of 15 months and I am wondering when in the world I became mother of a 15 month old....time may not have flown so much for me but I am still simply amazed I have been blessed with him. God is good. Trying, but good. 

The last thirty days have brought three stays in Children's Mercy for Bruce. When he was born, he had some major heart issues but with treatment for his Pompe disease, those heart issues were eradicated. Or so we thought. His heart has an extra pathway for the electric currents to jump and start beating super fast. Like 270+ beats per minute fast. Anything can start a SVT episode for those who have the ability but for Bruce, it's vomiting. Fortunately, it's not something he does daily but he is a baby in the middle of teething and has a primarily liquid diet through a g-tube. Unfortunately, we cannot stop them with the tricks most people can and it generally takes high doses of medication only bigger hospitals keep in stock. 

This last month when Bruce has had a SVT episode it is always at night and generally a weekend day...because nothing exciting happens on a Monday morning; it's Finagle's Law of Dynamic Negatives. 

SVT #1 :: Started on Friday the 13th and ended up with life flight ride #2 out of our local hospital. We were lucky to catch it but when I had my hand under Bruce's arm to hold him on my lap to clean him up, I felt the rapid beats and instantly knew what we were dealing with. The trouble was, we were 30 minutes from a county hospital and 90 minutes from Children's Mercy. We stopped at our local hospital, they did everything they could but they did not have the next level of meds available so a chopper was called and little man flew away in the night. Because of the lay of the land and direction we traveled in, I was able to watch the flickering lights of the chopper for 30 miles....green flicker red, green flicker red. Nerve-racking, humbling, exhausting all wrapped up in one long experience. 

As soon as they landed and when his favorite PICU doc put the stethoscope on him, he converted and spent the rest of the time flirting before we arrived. His medicine was adjusted and they sent us home that Sunday. 

SVT #2 :: Not nearly as exciting except we bypassed our local hospital and drove straight to CMH. The only time ever I nearly passed out from John's driving but he did good to get us there quickly and safely and again, meds were adjusted and they sent us home after a couple days. 

SVT #3 :: This time, not so quickly. Thursday night when Bruce started vomiting, I started panicking. I knew what was coming and I think I was getting more pissed off than anything. Certainly not with Bruce but with the situation, his medicine should be covering this. I quickly checked myself before I wrecked myself and away we drove after he started his episode. However, not after we tried all the vagal maneuvers they taught us : ice pack to the face, inverting and a quick cold shock shower. All to no prevail so we were southbound and down. 

When we got to the ER they took us right back and John and I started in on our routine - we told them everything they needed to know about Bruce, what meds worked for him, what didn't, a quick history and after they checked it out in the computer records, he was able to convert back to normal heart rate in less than 15 minutes after we arrived in the ER. That's a record and John and I felt like super advocates for Bruce. Rather than have to go through the normal routine they do for SVTs, they were able to get down to business. Momma likes. We got to the floor early the next morning, slept a bit and started in on a new plan with a new medicine. Momma really likes. 

But, this medicine takes time and close observation and an extended stay. Discharge is nearing and I'll get some time at home to do a load of laundry or six and get packed up to come back to Children's for this weeks round of as scheduled appointments and infusion. 

And  I do it all with a smile because who can resist this face.....

"ROOOAR"...means 'I love you' in dinosaur....

Boy's first haircut......that grin. Oh my.

And now for the statement. Living in the country is amazing. It's home for me. I am at peace. I wake up and every day I feel like I am vacation when I look out and I see nothing but rolling hills and prairie and trees and my neighbors are cows. And the way the sunlight hits the hills in the morning and EVERY sunset at night? I can't even put in words. It's glorious. 

It's also 118 miles one way to Children's Mercy and when we average over 10 appointments a month and have three unexpected stays in thirty days, it's exhausting. And frightening. And just plain silliness nonsense. So, Bruce and I are moving FROM a four bedroom, two living room, giant kitchen house with original hardwood floors and wood trim with a full basement, new deck and did I mention giant kitchen TO a one bedroom apartment. But, it does have a garage. And it's only 17 miles from CMH. Smart, indeed. 

I may sound a little resistant but really I am excited for the new adventure. The new place is actually really nice, great amenities and probably just as big as my house with exception the lay out is much different. I'm already planning quirky little DIY designs and have a new sleeper couch picked out for guests, mainly aunt Kacie when she comes to town :) And of course, margarita nights because I am only a few miles from a few ladies whom I know will join me in my quest to properly utilize all the citrus fruit in my life.

John and I are the best advocates for Bruce, with exception of a couple key players at CMH, and absolutely determined to make the decisions for our son. We are partners when it comes to Bruce and friends when it comes to us. Stress and pressure has taken its toll on our relationship but there is no one else in this world I would want to make parental decisions for Bruce with. Some days, I think John feels the same.

My brother is home from deployment #2 in Afghanistan. It's a chest-swelling feeling of relief and fear and pride and bittersweet sadness because he still has 2 years, 1 month before he is out of the Marines. I have never wished time to go by so quickly in my life. I love you, brother. You are MY hero....you and your handsome nephew.

Until next time, my friends.

x

One Year Down.....Many To Go!!!

Every time the thought passed through my mind the last couple months that we were about to celebrate Bruce's 1st Birthday and what a blessed milestone it is for that happy and handsome little boy, I couldn't help but slightly and silently freak out that it's been a full year for so many events.

 May 20, 2012 :: Bruce Jackson turned One Year Old. Wow. I put a lot of energy and time into making it a special day for him because he truly deserves it (even though he won't remember it) and a HUGE THANK YOU to everyone who helped celebrate at one of his three parties....he is loved :)

Bruce was born on a Friday afternoon - he was one of a few or four scheduled c-sections that day. I was 38 weeks and had been having some issues with my placenta which resulted in a lot of non-stress tests at CRMC. Which resulted in hanging out with all the awesome nurses there and getting to know them. Finally, the doctor gave in and we were on the books. At 1:38 pm, we welcomed our son into the world. At 6 lbs and 6 oz, I was pretty sure he wasn't our kid - or done baking yet but he checked out as healthy as can be. A couple hours later when I got to hold him for the first time, it was like my life finally had purpose. I gave thanks over and over in my mind to be able to enjoy that moment and wanted it to last forever. 

Much to the CRMC staff's dismay, we took up residence over the weekend. With the storms coming through and my spinal headache, I wasn't ready to leave yet whether it be new momma's nerves or just a gut feeling. I think higher powers in the end had a play. After a couple epidural shots and a lot of caffeine later, I was ready to take our boy home Monday morning. I hung out in the nursery for a while late Sunday night still on edge from the Joplin tornado and bright-eyed and bushy-tailed from a 2 liter of Coke. The nurse and I took note of Bruce's legs swelling around 1 am or so and she put me back to bed, assuring me she would wake us up if something happened but it was probably fine. A few hours later, she did just that. Things weren't fine.

John and I packed the room up like gypsies when she said there was a chance he would be transferred to Children's Mercy. I finally felt better to move and didn't feel like my head was going to explode but I remember the night nurses keeping a steady dose of painkillers in me being just a few days after surgery. Angels. The pediatrician came in her pjs and I knew it wasn't good. We met her earlier that weekend and she was very professional - I was excited to have met her. Then to see her in her flannel pants and hair in a ponytail at 5 am, I couldn't help to think, Shit. 

The flight crew from Children's was on call because of the tornado and made good time getting to Cameron. It didn't take much looking of the chest x-ray to know something wasn't right, even though they assured us it was probably just the computer screen. Right. After the crew in the jumpsuits started a routine iv, little man was ready for his debut helicopter ride. Some kids get to ride in a car for the first time but mine got a steel bird. John and I watched from the parking lot as they took off and we were right behind. I called parents from the road, yelled at John for getting lost, and managed to stay relatively calm. Even though I yelled. 

We took the last bed space in the NICU and it was clear to see the staff wasn't thrilled. No one really knew why he was here and what tests to do first. For a while that day, a midst shuffling family in and out to see him and semi-abiding by the sign-in book Nazi's ridiculous rules, we were at a stand-still. I was nursing Bruce that afternoon when the first clue came and it was a doozy - his heart rate jumped over 300 bpm and I witnessed the nurse actually tapping the monitor like in movies, then realizing what was happening. A famous CMH/KU doctor happened to be rounding and was the one who stopped it. A lifetime of gratitude to that man. 

Immediately an EKG and an Echo was ordered and I will never forget the cardiologist who took all of 6 seconds to see the monitor over the tech's shoulder before he walked away. Later that night, we sat in a conference room across a table from him and about 10 other doctors, nurses, social workers, and I'm pretty sure the chaplain was there, while he drew on a piece of paper what was wrong with our son's heart. And it wasn't good. After they left the room with more than enough apologies and promises they would do their best to figure it out what was causing it, I had a breakdown where I'm pretty sure I cried tears out of my nose. 

This is the point a year later where I am having a breakdown. To go from the greatest day of one's life to the absolute worst news you have ever heard just a matter of hours later, was more than overwhelming. Up to that point, I was able to find some humor in Bruce flying in a chopper and his village of people taking turns pissing the desk lady off  - as long as he was ok. And healthy. And up until that point, I was living in my own happy little oblivion.

The story goes, if you have been reading at all any this last year, that we did find the culprit and treatment was started immediately, at day 13. The longest 10 days of my life to be patient while they poked and prodded and asked us questions about everyone in our families, minus the first settlers. His heart corrected itself within two months of life and is now NORMAL. Take that Dr. Bad News. I actually saw him at CMH a couple weeks ago and kept my eyes to the floor - it wasn't his fault he had to deliver the news but I will forever associate him with that horrible day. Just a part of it. I still nearly hyperventilated when I turned the corner. 

It has been tough to watch the news the last few days because everywhere you turn, it's about the Joplin tornado. Later that night after our conference and we had shared the news with family, the hospital gave us a room at the Ronald McDonald house within the hospital. I shared the twin bed with John and we smuggled my sister in, who occupied the floor. The rooms aren't meant for long term stays or for anyone over 4'6" but handy to have when you can't leave/aren't willing to exit the same building until forced out of the hospital yet. I was being a pain in the ass and not keeping up on pain meds and refusing wheel chairs when anyone looked at me so obviously, sleep was terrible. But I did manage to get a little bit and when we woke up that next morning, through the paper thin walls, I could hear a dad talking on the cell phone with a Southern Missouri accent. I cursed him a bit for waking me up out of my horrible sleep to my horrible realization I was a parent of a child in Children's Mercy but immediately started praying for him and his family when I heard what he was doing - he was making funeral arrangements for one child back home in Joplin while he and his wife were up in Kansas City with another. I never saw him or heard what had happened in the end and maybe it was just God telling me that it was all going to be ok because there were worse things happening that day, I don't know. But that was the point when something clicked in my mind that my whole life was about to change. 

You think having a baby himself would have been enough to change my viewpoint on the world but that day was the beginning for me. Now I have a little man who has showed me a whole new world and brought me closer to God....and good Lord willing and the creeks don't rise, I will do everything in my power to keep him happy and healthy. 

May :: We're about to come full circle....

It's May! AGH! Where in the world has time gone....it's been a journey and without getting too sappy on you, here's the latest Bruce update ::

Infusions are going great - we're about to start the new drug trial with the adult version of his enzyme replacement therapy next month and Children's has been busy-busy getting paperwork finalized behind the scenes....better them than me, I say.

We met with neurology a couple weeks ago and she was PLEASED to see Bruce as he is now...seizure/spasm-free since November 2011, happy, smiling and growing well. I have NEVER seen that woman pleased so it made my day. Week. Year. Lifetime. She does want a MRI soon just to see what the abscess looks like and  that's just a drop in the bucket for this pro.

PT/OT is making some amazing strides. Since starting in December, Bruce has mastered rolling over, sitting up, weight bearing on the legs and is close to pushing himself to sitting up, staying up on all fours and taking steps while holding hands. When he started after all of his hospital stays, it was way too fuzzy to say when he'd be doing any of this so to have these goals in the bag so soon is amazing. He's a strong little guy and practice makes perfect!! He's pretty much given up on the bottle so his calories are primarily baby food and bolus feeds down the g-tube. We're slowly working off the night time continuous feeds because sleep is nice for parents.....

During April, Bruce had a couple poor hearing exams. Yesterday he had an ABR where I kept the poor guy awake by rolling him in a wagon through the hospital after his morning PT appointment so he could people watch all the interesting people you see at Children's Mercy and then he slept through the hearing test of all the pitches. Low and medium pitches were normal but associated with meningitis as he had are damaged cloacaes...(I always thought that was chicken anatomy but apparently different spelling) and high pitches are affected. He is borderline failing and quite possibly going to get worse as the cloacae grows incorrectly as he grows. So, we get to add an ear doctor to the large team of Bruce's plethora and maybe I get to meet the entire staff at CMH! So, that doctor that asked me if I worked there last time could quite possibly be our new doctor.....Anyways, we'll do our best and take whatever treatment necessary to ensure that Bruce hears his momma say, 'Get out of that mud puddle' or 'Leave that poor dog alone' or 'Stop chasing the calves' or whatever this ornery little boy will be up to....

Coming up we have the Muscle and Nerve Rehab Clinic, Neurosurgery follow up and Cardiology follow up. We are not expecting any major changes and are looking forward to the rehab clinic for their initial assessment and if Bruce is a candidate for any specialized mobility tools. I don't think he'd use them too long as much progress as he's making but if it helps in the meantime, we'll take it!

On the family side - Congratulations to (my sister) Aunt Kacie and her new husband, Uncle Jake!! He's pretty much always been Uncle Jake but it was nice of her to finally make it official :) The wedding was beautiful and so much flippin fun and they had a great time living the honeymoon life in Mexico...now they're back in Iowa and ready to start the rest of their lives together!! I'm not even going to say it but Bruce would like some cousins.....ONE DAY.

Bruce's Uncle Seth (my brother) is now on his second deployment to the Helmand Region of Afghanistan and hopefully the last if politics and government ever get their heads out of their asses and ya, ask me how I really feel. We pray every day for Uncle Seth and all of the Marines and troops on deployment and will write him all the time!! WE LOVE YOU, UNCLE SETH!!!!!!!!!!!

Bruce has his first birthday this month!!! There is much to do yet for the big celebration but that'll all come in time...so I keep saying :) This coming weekend we will be walking with some friends and family in the KC March of Dimes Walk and I cannot wait to be a part of that!! Hopefully we'll get to see some familiar faces from the beginning days in the NICU and to be a part of such an amazing organization will be neat....Go TEAM BRUCE THE POMPE MOOSE!!

Little man wanted to take momma's chair and watch cartoons during his last infusion....of course I gave up my seat!

I think that's it...so much for keeping this blog updated with short and sweet posts :) Thanks for reading anyhow....God Bless!!!!!!!!!!!!!!!!!!

"No, I don't work here."

EEEEEIIIIIIIIIIIIIAAAAAAAAAAAAAAAAAAAAKKKKKKKKKKKKKKKKKKKKKKKK SSSSSSSSSSSSSSSHHHHHHHHHHHHHRRRRRRRRRRRRRRIIIIIIIIEEEEEEEEEEEEKKKKKK.

Bruce's new words. He doesn't cry or throw fits but boy, does this kid shriek. A lot.

The last several days have been chaotic, crazy and wonderful. Last Friday was Bruce's first day at the Early Childhood Center in town and I don't think he could have had more fun! He loved seeing all the kids and even ate the best for me he had all week so I think he's going to do just fine...and I'm sure learn new tricks and share his own tactics....sorry, other moms. 

Saturday, Bruce and I walked in our first 5K! It was a lot of fun and a huge thanks to the Driver family for inviting us to the Eagle Egg 5K at Summit Christian Academy in Lee's Summit! We weren't exactly at the top of the group but we weren't at the very end, rounding up the cattle drive with our small herd of children and strollers. I am looking forward to doing more this year - Bruce really enjoyed the mass of people and scenic ride!

Jake and Kacie and papa bear John met us in Kansas City Saturday evening and the four of us big kids headed to the Sprint Center for some rank bulls and tight fitting blue jeans! We all had a lot of fun at PBR and I can't wait to take Bruce with us - next year he will be making the trip with us! 

<----- Me and my beautiful sister, Kacie!! 

 Her wedding is coming up SOON.....

...17 days soon. 

My family and I made it back home to the ranch on Sunday but long enough to mow the lawn, unpack from the weekend trip to KC and get ready for the next two days of appointments at Children's for Bruce.

Monday was Infusion Day. All went well minus a late start - sitting on 1-35 at a complete standstill with no sight of a bathroom for miles is scary...I need to rethink my morning caffeine intake on our long commutes to KC should the event of another car fire occur and I am left nearly desperate for a port-a-potty. 

Tuesday had an early start in radiology with his upper GI consult from his random week of vomiting early February but fortunately, there is no obstruction nor reflux. Hard to say what that was all about but I imagine he had some of the flu bug that plagued his momma and daddy and left us nearly lifeless and just did a better job handling it than his sorry parents. Nonetheless, a consult was ordered, we complied and now we know little man fine....it never hurts to check with this one :) 

Later Tuesday morning we met with PT and Bruce showed off his new moves. She was really pleased with his progress and we discussed our next steps with little man. As she was saying she wanted to see more floor mobility before we started with standers and walkers, Bruce was rolling all over the place and she said, "Like that." We meet with rehab clinic in a couple weeks and I think we'll have a better idea when we can start with some mobility tools and get this kid upright and moving!

That afternoon was another hearing exam. Same results as last time and we aren't surprised that there is some hearing loss after his bout of meningitis last summer. Our next step is an ABR exam where they will test his ears while he sleeps to find out just how much loss there is and then decide what kind of devices he will need. Now's the time to be getting on this as he develops his speech and mobility...maybe if he hears himself scream and screech, he won't do it as much?? 

A momma can only hope....

And to the nice doctor who asked me if I worked at Children's Mercy, I hope it was because I look doctorly. 

It is amazing the amount of dirty dishes John can accumulate in just a couple days of 'baching' it but I don't have time for those today. Nor do I have time for laundry and clothes so I will be working from home today in my robe...

A parting view of our neighbors to the south ::

Even with all the chaos, screeching,and mountains of work and tasks awaiting me, I AM BLESSED!!

And that, gentlemen, is Bermuda Hybrid #5.

I loooooooove that movie. Who doesn't love some Dennis Quaid in baseball pants?!

Bruce Update :: Infusion went great. Too early for final hearing exam results but round 1 shows mild to moderate hearing loss from the meningitis. Judy at PT was impressed with rolling over but still pushing for more results - I like that about her. 

Momma Update :: New camera. It's Spring. I'm already worn out from the rain and appointments this week but I'm home and can work the online marketing galaxy in my pjs.....life is good. 

Papa John Update :: Got his new boots and they don't make his feet look big - his words, not mine. But his feet ARE big - my words, not his.

Daddy loves baby.

Baby loves bananas.

A lot.

Momma loves a happy baby.

 And chunky baby legs.

And Papa John's new boots (:

Top o' the mornin to ya!

Happy St. Patrick's Day! I've gone from celebrating in a bar with green beer to waking up to Bruce's own special pot of gold! Who doesn't love giving a cute baby a bath after a morning diaper blowout?!

It's been a great week so far! A couple nights ago, I was working on supper and John laid Bruce down on his back in the living room. When he walked back in after a few moments, little man was on his belly! After a few months of PT, we have a roller! I immediately gave up on creating a culinary masterpiece and hid behind the door to catch him on video...within a few minutes, I had plenty of proof!

The next scheduled infusion is Monday and I can't wait to see the looks on their faces after Bruce shows them his new trick!

The Feeding Saga :: Parents 1 pt , Bruce 0

Each day, feeding time is a like a box of chocolates. You just never know what you're gonna get with Bruce. 

So when he refused his bottle for the third day in a row, we added a little chocolate. 

That's right. Breastmilk + formula + thickener + chocolate malt Ovaltine.

I ended up spoon feeding it to him so he would have a taste of it and practice the spoon some more. 

This is the result! 

I don't think we solved the bottle drama but at least we know he's a chocolate malt kind of kid :)