Hope

Hope

Monday, March 2, 2015

Awards, Camps and LEAKS

A few new things these past few days. First of all, Jason and I attended the Wisconsin Mass Mutual Awards Banquet in Madison last Friday night. Jason received an award for '2014 Leaders', which is such an honor! He is the only agent with under 4 years experience (he only had 8 months in 2014!) to get this - I'm so proud of him! Because of this honor, we'll all be going to Orlando in July for a 3-day trip with the boys from his company. We plan to extend the trip by two days to surprise the boys with a day at Legoland as a birthday gift, they are going to FREAK!
Jason also did such an outstanding job in his first year that he qualified for himself AND me to go to Costa Rica in April (sort of a President's Club)... oh my God! He's the only first year agent to qualify - he likes to overachieve :) I'm excited for what he'll bring in 2015 with a full 12 months to work with. Our family and friends have been so supportive in his first year - we're so grateful!

The boys started baseball camp. It's on Sunday evenings for a few weeks to work on batting, fielding and throwing at an indoor venue. Jay wanted the boys to have someone other than himself coach them a bit before the spring/summer league starts - that yes, he coaches for!
The boys are excited because the neighbor boys are all in it too - good for them all to get together once a week during the cold months like this. We all hibernate!

Jay and I are about to pull our hair out with some house issues... again. Apparently getting new windows (which kept all the moisture IN) and getting new insulation (that now we found out isn't the right code and it covered our vents) caused moisture to collect and come through our bathroom ceiling including the tiled ceiling of our walk-in shower - and some other issues. We've had a company come out and do a complete review of the issues that's being submitted to insurance and clearly the insulation company will be getting a call.
ugh.
Apparently we may have to replace ceilings, showers, walls, insulation, install new vents etc etc - it's a nightmare. Of course! I'm so tempted to look for a brand new house and be done with this non-stop mess. My dreams of a new kitchen keep getting farther and farther a reality. But alas... we love our neighborhood and couldn't dream to leave... (waaaaaah for our first world problem...)

Jason giving his best Brady-smile and his award!

Bedtime book~ you can see how Jax sleeps each night with his backpack hung on his dresser.

Dr Seuss Day! Brady snuck away to paint his face and his teacher thought it was so cute, she sent me this photo!

Jax working on his throwing at camp.

Thursday, February 26, 2015

Star Student

The boys finished up basketball last week. Thankfully, Brady got a basket and all is right with the world! Jax kept scoring, but nothing for Brady all season and he was starting to lose his confidence. He totally drilled his basket and everyone cheered for him - yay! The boys start up an indoor baseball fielding camp for a few Sunday evenings starting this week. They're pretty excited about it and it will be nice for them to have someone other than Jay be their coach - it will be good for them.

Jax has been 'Star Student of the Week' this week. Each kid gets a week through the year. Brady is the last week, which was a very good strategic move by the teacher in hopes his speech would be better at that point. Jax has been loving it and gets to show something each day to the class in addition to other things they do special for him.

The boys had some GI upset last weekend, which proved to be OK for them, which was a nice little test run for Jax (and us). But, Brady was in so much PAIN in his bum that I had to take him to see the pediatrician. He was literally crying and screaming on the floor!
After an exam, the doc found a fissure - a small tear in his bum which was causing the pain. It's amazing how such a small thing can hurt so bad! We were happy to hear it was something 'minor' in the large scheme of what else could cause such pain. So, we're doing bath-soaks and special cream. He was SO much better today and back at school. OY, these kids!!

The boys last basketball game

Jay's new tattoo. The top two lines are the boy's initials and year of birth, the bottom line has my initials with the year we were married and Jay's initials are down the center of us all.

Doesn't everyone snuggle watching movies like this?

From Jax's teacher - he was showing his football from the Packer visit in the hospital. The teacher put his photo up on the screen behind him, too cute.

Jax going over his poster of info about himself and then taking questions - clearly he's not shy :)

Tuesday, February 17, 2015

Loving Each Other

We've been working on our 'normal' for the past week.
It's been solemn, and everything that's happened in the past month still crosses my mind daily, but we are definitely, 'ok'.
Brady had a rough couple days last week with bringing up my grandpa, but now a week later, he seems to just bring up grandpa's name here and there. Jax doesn't like to talk about it all. We thought the boys would have the opposite reactions, so it just goes to show you how losses affect everyone differently.

We tried to enjoy Valentines Day with the boys. They just love this holiday and they had a lot of fun through the week at school preparing for it. We didn't do much at home, but we did spoil them with them with small gifts and did a lot of cuddles and hanging out. We went out for pancakes that night - just because we CAN :)

The boys are finishing up their last week of basketball this week. Jax just amazes me with his power to throw the ball given his size and muscle tone. If he had a few inches and some muscle mass, he would seriously dominate in sports with his enthusiasm and drive (he's our own little Rudy). Brady has been so happy for him each time he scores a basket, but last week Brady took it pretty hard that he himself hasn't made a basket. So, we're REALLY hoping Brady does tomorrow night.

Jax will be star student of the week next week. Each kid gets a week of being the star. We were working on his poster that he had to fill out that talks all about himself. In a section about 'what's special about me', I gave some suggestions to him and one of the suggestions was his 'tubie'. He absolutely refused to list it. I asked him if his friends knew about it and he said no. Hmm. I asked if he was keeping it a secret and he said yes.
I totally understand not wanting to stand out and be different that way, but it made me sad. His tubie has always been a part of him, and while it doesn't define it, it is 'part of him' and his journey - nothing to be ashamed of. I'm sad that he's already at the age of wanting to hide things that make him different :(
He also said he wanted to list that he had a brother, but not a 'twin' brother - ummm sorry buddy, you'll never be able to hide that fact!

We started Jax up on his hunger-inducing medication (finally) and it's been going well so far. We're only doing the twice a day dose rather than the three times a day just to see how he does. We are determined to get him fattened up. It's on my mind constantly to get him as big, strong and healthy as possible before the next inevitable illness hits. It's just reality that it will. And our reality right now says Jay and I will be hot messes when it does, so... let's get some pounds on this kiddo.
By the way... after being in Brady's class for the Valentines party last week... I'm shocked that our kids have only had the two illness this winter - all I'm going to say is... g.r.o.s.s. The coughing, sneezing, nose wiping on the hands and constant touching of each other - blech.

Speaking of health and wellness, we're taking family trips to the chiropractor each week for awhile. Getting everyone straightened out and upping our immune system.
We have the soup kitchen tomorrow night that we're all looking forward to as well - back in the saddle as a whole family to fill up our hearts a little bit.


The claw game fail - but fun anyway.

Found this on my pillow from Brady. I'll treasure it forever.

100th day at school!

Brady made this Batman costume at school out of sticky paper.


The boys all ready for the 100th day of school trying to dress up as 100 yr olds!

Jax sinking his shots.

Brady and some kids decorating cookies at the Valentines party at school.

Jax in his class.

Brady goofing around with another boy.

Found this on the wall at school. Brady plans to be a teacher, go to New York, have 2 kids, have a girlfriend and wants to get married...

Bags of kindergarten valentines...

Tuesday, February 10, 2015

Saying Good bye

It's been a hard week for us. Which seems to be a theme for us lately, but life seems to be full of unexpected events. I received a call that my grandfather was in the ER on Sunday, then a call the next day that he was in the ICU, then a call that he had declined more. The heart valve that he had replaced about a year and a half ago had failed.

I picked my aunt up from the airport in town and we took the 2 hour drive north to see him. We found many family members camped out in the lounge. My grandma took my aunt and I back to see my grandpa. And I knew. I finally believed the words that were being told to me the night before that I didn't want to believe.

My grandpa wasn't able to speak and was sedated, but he did some squeezes of my fingers. I started to speak to him and I remembered our last phone call was when Jax was in the ICU the week prior and my grandparents were worried. I told my grandpa that Jax was doing great and he was healthy and running around. My grandpa opened his eye and a tear came out...

I left that night to get home and power pack everything that I could for myself and the boys and had plans for Jay to bring them on Friday through the weekend. I had to attend a meeting the next morning (that had been moved for me the weeks prior from our emergency with Jax) and I left for Green Bay directly after the meeting.

I had that night with my grandpa and many family members at the hospital. My mom and I went to her house to get a few hours of sleep while my brother had flown in overnight and had gotten to my grandpa about an hour before he passed. I feel that my grandpa had waited for him...
We all gathered in the middle of the night that night and held his hands and each others, and prayed.

My heart has been broken into pieces, but the entire family has come together in such loving support. We put picture boards together, had dinners, wrote eulogies and prayed. I delivered one of the eulogies and really struggled once up to the podium. It took me a few minutes to stop crying, but once my brother came up and stood with me, I was able to read its entirety. I can only hope it was a fitting tribute to him and all that he meant.

We've been home for a day now and are trying to find another 'normal'. My heart is aching and I still can't believe this has happened. I'm leaning on faith that we will see each other again, and we have another angel watching over us.

Auf wiedersehen, mein Freund.


 








The night before Grandpa's heart surgery





Romeo getting his class-Valentines in order

Brady lost his first tooth over the weekend








Monday, February 2, 2015

Kickin' it back at school

We're all on our way to finding our normal. Jax has been back at school and doing great. His teacher met us at our house the night before he was going back and he was a mess when she came over. He didn't want to see her and he cried. We all assumed anxiety was setting in and having her here instead of at school was just weird for him.
We had such a great meeting with the teacher and we had plans to walk Jax to his classroom the first few days and to skip recess and gym class until the pediatrician cleared him. He did amazing at school and everyone was so happy to see him back.

The pediatrician gave him a clean bill of health and had a really nice long talk with me. We've both replayed that night so many times, but in the end, we have a solid plan going forward. She gave us a glucagon injection to always have on hand for the off chance he'd ever get hypoglycemic again, but really, our plan is to always travel with it just in case and for it to collect DUST.

We have the most amazing doctor ever... she really is one of the great ones. She talked with me about Brady and his emotional stability with it all and then how Jason and I were doing. It's always nice to get 'permission' (for lack of a better word) to feel traumatized and that it's normal and okay, but what the signs and symptoms would be if we needed some extra help to feel better and move past the guilt.

She's also offered her services to help us if we have any insurance issues when the bills start to pile in. She will make calls and advocate for us if there are any issues. I basically just want to hand over our savings account # and tell them to just take the out-of-pocket limit and be done with it! Ugh, that's going to be a nightmare. BUT, for once, I will not complain about insurance and medical bills because my little buddy is healthy, happy and running around - we'll take it!

We have such a great little town... the EMT that worked on Jax that night called me last night to check on us. He told me he was so shaken by it all, and it's really hard to work on children like that. He invited us all to the station to give the boys a special tour and to see them. He was SO thrilled to know he was ok - so sweet.

Brady is doing well. He is probably one of the sweetest children I've ever known. He gives Jax anything he requests (even the last ice cream treat) and is just all around a great brother. I'm so glad to have these two back together!

And when it rains, it seems to pour. My grandfather is in the ICU with some complications and I hate being so far away. If you have any prayers left (sorry I keep asking for them) please throw some to my grandpa and our family.

Our guys


Back to school work!

I love how B is looking at Jax here...

They wanted to show the flowers

New proud owners of some new gear. Notice the back up cans of juice that will be stored with it as well...

Best photo bomb ever!

Small changes happening. Single use disposable cups for the kids. Maybe it won't help at all, but doing SOMETHING to help keep germs to themselves makes me feel like I'm at least trying...

Sunday, January 25, 2015

Home and re-adjusting

Jaxon got better each day while on the Endo-floor. His tests all came back normal, which is giving us the result that an imperfect storm happened. The specialist (who happens to be Jax's actual Endo specialist) said that this is technically a complication yet from the flu that he had the week prior (which we felt he did so well with) and that he was still systematically healing from it. He had a week's worth of Prednisolone for the flu that he had stopped about 4-5 days before this, so that always leaves your immune system a little deflated, he is growing taller but not wider so he fell into the malnourished category for weight again (which we knew from the week prior at the feeding clinic and had him on a new regime) and he came down with the stomach bug. So, he just couldn't beat this stomach bug - his body wasn't prepared for it. He lost too much fluid/salt causing Hypovolemic Shock and then his blood sugar plummeted causing the hypoglycemic seizure.

We were able to get Jax medical attention at the first sign of the seizure thankfully, so he was given treatment in time to come back. He hasn't suffered any neurological deficits or motor function and snapped back without any IVs after 8 days. If Jason hadn't been up changing him at that moment, the outcome could've been very different, so for that, we are ETERNALLY grateful for that timing.

We came home Saturday afternoon and have been re-adjusting back to normal.
I think I thought that once we were home, settled and had a night of sleep in our own beds, that everything would be back to normal.
We're struggling.
Jaxon himself is doing fine. He is back to his smarty pants wit while laughing, yelling, running and being his great little self. Brady has his partner in crime back. We took Jax up and down the stairs a few times and he is completely independent once again. He does suddenly stop, hug me and say he loves me more often, so I know he feels it too.

Jason and I still feel it though. Being back home at the scene and trying to just go about our day taking care of the boys and the house... it's odd. It's hard to explain, but it's odd. It feels haunting. Like this constant reminder that it can happen randomly and fast.
I have such mixed emotions about it because I am unbelievably grateful, thankful and humbled by it all.
We are so BLESSED.

So, we're both trying to not linger on it or let it ruin our healthy days with these little trolls, but wow... it's really taken us both aback. Almost like we were shoved and we've been stumbling backwards this entire time, yet not falling.
I'm trying to give myself a break and realize it literally just happened. But closing my eyes makes me relive... and go over the details of what was different so 'next time'... yet, there shouldn't ever be a next time we were told. Although, we were sent home with a new device to check, just to make sure. And IF it happens again, we'll do more testing... (sigh)
Neither of us feel like ourselves yet, so I'm hoping with more time and normalcy, we will. I mean... did all that seriously just happen??

I was supposed to be starting a new position in a new division last Monday (my 'meetings division was sold and I was kept for a different division - luxury vacations). I have to find a way to be able to focus on my new role - thankfully they were understanding it would have to wait a week - but that's all about to start up tomorrow.  All new programs, systems, clients, reports etc etc - gotta get my game face on!
Jason hasn't had a normal full week of work in almost a month between all four of us having the flu over the holidays and then this.
We need some 'boring', although it's been kinda boring with all the sickies!
Jaxon will have a physical with our pediatrician tomorrow to be cleared for school, and his teacher is going to meet us at our home to have a meeting about all of this and how school will go for him.

I'll update how the week goes for all of us. I have much better photos for you to see of our healthy little elf!

Jason and Jax watching the Packer game Sunday night. Jax slept through most of it and awoke for the end - the roughest part!

Getting his hair washed and not quite himself yet on Sunday.

Getting his Central line and cath out on Monday because of the high infection possibility with it's location. Jax was SO upset during this procedure (he's scared of tape on his skin) and the stitches holding in the central line were tight so it ripped his skin. He received this gift DURING the procedure which helped to divert his attention.

They wrapped him up like a burrito with warm blankets after this and he slept like this for over 4 hours.

With all that sleep, he had a burst of energy for an hour just in time for a visit from Brady for some video games. He woke up to a balloon party which made his face light up. The gift shop opened this day :)

A tutor from the hospital-school was working on letters/numbers/reading with him.

Jax had an OT for the week that worked on strengthening his motor skills. Here he worked on sitting up and reaching for extended periods.

Doing his activity 'homework' to work on that fine motor skill!

More OT homework through the week.

This is just funny. Shannon brought a monster truck hat that was a big hit.

Because it he wore it ALL night, even through dinner :)

First walk down the hall with his physical therapist!

He's just realizing we're up on the 11th floor and can see a lot of the city.

A surprise visit from his and Brady's speech therapist! She brought tons of pictures from the kids and some gifts from the teachers, office ladies and the principal! They were so embarrassed to see a teacher from school OUTSIDE of school! Jax received a video each day from his class doing cheers and sending love - they were SO supportive!

Just one of the girlfriends he made at the hospital, this is Nikki, one of his fav nurses!

Jax is living it up here. I however am clearly over life. We were on our way to do some art, and we were told Jax needed an EKG since his potassium level was high. Everything was normal and they assume it was a false blood reading since the finger was squeezed hard for that sample.

LUCKY Jax got a visit from ex-Badger and current Packer player Scott Tolzien!

He found out Jax had a twin so he included him in on the gifts!

He gave me a hat :) He could tell I was fumbling to put my unwashed hair back as this famous athlete was in the room all of a sudden - kinda hilarious!

This was the photo that the photographer emailed me that they may use on their website - how HAPPY does Jax look??

Sunrise by Miller Park the morning I knew we'd be discharged since Jax did well that last night...

On our way!
Sunday... spoiling the boys. Jason turned in their old Play Station (which was his from decades ago) to an updated one with some games. Jason told the boys how proud he was of their bravery last week. I was cooking dinner while they were doing this. We certainly had a nice evening of normalcy :)