Wednesday, August 6, 2014

It's been awhile... searching for normal

WOW! Looking at the date of my last blog post and seeing 2013 was a shocker. But it's been that kind of year. We are busier than we have ever been. A few updates for everyone and lots on my mind today.

Ella is almost 9! (16 days and counting) She starts 4th grade next week. Dance is still her love. We went to Nationals this summer in Orlando. (much more on that in another post)

Alex is 7 and heading into 2nd grade. He's a level one blue belt in taekwondo and has belt testing this weekend. He is so smart and doing really well in school. His real loves are video games and fast cars! (but we have to limit his screen time)

Max is 4 and continues classes/ therapies at his developmental preschool. He's moving to afternoon classes this year. He just had surgery last month to remove his tonsils and adenoids as well as 4 scar revisions. It was a rough week in the hospital and I'll post more on that later as well.

Troy continues to work for a wonderful company here in Olathe! I've gone back to work as Communications Director for the March of Dimes. I also do regular freelance work for Medical City Dallas Children's Hospital and I work at Ella's dance studio on the front desk to help cover our expenses there.

This has been a tough year financially and emotionally. Troy had a large cyst removed from his neck in April. We were terrified that it was cancerous, but everything turned out well and he's been healthy since! I had my annual MRI and my tumor has not grown. In fact, it may be a little smaller. The doctor feels there is still a possibility it's bone, but could also be the tumor with just minor variations in size from the MRI.  Overall, the size is stable and that's GREAT news!

It's hard to believe that it's been 4 years next week since we brought Max home. Troy and I were reflecting last night and talking about how "different" we all are. And how we still see the impact on our lives daily. Is it bad that we're "waiting to be normal again" after all this time?

He came home the day before Ella started kindergarten. She was thrown into the mix and we really weren't prepared for her or for everything that was going on with Max. We became hermits. He couldn't go anywhere or be exposed to germs. She was bathed in Purell everytime she came home. Life was all about him, even though her life as a student was just beginning. We didn't make friends with other parents in her grade level. She didn't get to have play dates or sleepovers. She was cheated out of so much.... and even now, it shows. Ella doesn't have friends. She has buddies, people she plays with at school, dance friends, etc... but she doesn't talk to or share or confide or feel close to anyone and it breaks my heart to think that we contributed to that.

2 years later, Alex went to kindergarten. Same thing. Still on germ lockdown and honestly Troy and I both still felt to anti-social, we just didn't care. We didn't mind not seeing people or doing fun things, our lives focused around keeping Max well, protecting him, meeting his every need and we had one another. But that's not enough for the kids. Alex gets bored. He begs for playdates and sleepovers and talks about buddies from school who we don't know, we've never met their parents. We're doing him a dis-service and it sucks.

Troy and I have no life. We don't see our friends. Most of them have ditched us during these LONG periods of quarrantine. There aren't many people we've ever trusted to leave with the 3 kids, especially Max. So we've had fewer date nights than I can count on one hand in the last 4+ years. We don't get to go to movies or dinner (unless it's work related) we haven't celebrated an anniversary other than dinner on our family room floor after the kids are in bed. We don't spend time with other couples or families. We can't go to church, because Max can't go into a class with other kids with germs and we can't take him into a quiet sanctuary. We're just us. I'm lucky to have him! (and I'd say vice versa) but I'm realizing that our isolation, is now becoming our kids' isolation as well.

This summer, we're trying to branch out. We took Max to a Royals game thanks to so free tickets, because we can't afford that stuff! (it was a fiasco, but we did it) We took him to Florida for his first trip to Disney and the beach! It was a memory for all of us. Uncle James sent us passes to the park. We drove because he still can't fly on a plane, etc... but we did it! His surgery was only 2 weeks away and Troy and I both had this trip on Max's bucket list. Sad, but yes, we have a list. When a child is born with all of the problems that Max has encountered, you don't take time for granted, not a single day. There are things we know will bring him such joy, and we want to see him experience those things, now, not later, because you never know when later is too late. Watching those first steps into the sand and the tide, seeing him smiling, face to face with Buzz,  we both cried. Every day with him is a gift and these are moments that we can treasure and remember forever!

His surgery, was an ordeal, as we suspected it might be. (again more in a later post) It's easy for doctors and nurses and even friends to look at Max and see how great he looks. It's easy to forget what he's like on the inside. His lungs are crap. His body does a poor job of regulating his sugars. His bowels are still a finely tuned mess and MIRALAX is our daily friend to keep things moving. He reminded everyone at the hospital that he's in charge and that his body doesn't always do what they expect, when they expect it. He spent 6 nights there, need respiratory support for 3 days and was unconscious from a dangerously low blood sugar drop. Seriously kid! But his tonsils and adenoids, which were ENORMOUS are gone. He's breathing easier, eating more, sleeping better. Even his scars are so improved!! This surgery is going to be  life-changing for him and we hope it will be for us.

We're looking forward to this school year. Hoping it might be a first where we can ease up a little and not worry so much about his germ exposure. We won't know for sure until the first bugs roll in and we see how his lungs hold up. We are letting the kids go to another mom's house for a bit after school (due to Max's new schedule) where other kids there age will be playing and snacking. Maybe they'll make some friends. Now it's time for Troy and I to do the same. We hate it. Troy doesn't want to be social with anyone. He just wants to curl up in a chair with the kids and hang as a family. I LOVE talking to being around other people. But it's hard sometimes, because the things that are important to them seem trivial to me. My whole life focuses around keeping a kid alive and getting him the help and care he needs to finally go to school. (and juggling my 3 jobs as well as 3 kids schedules). We've started turning attention back to the other kids. They both have busy activities that they LOVE and we work very heard to get them there and support them, so they can enjoy time that's just about them, not about Max and so they know that although our lives have been stretched and stressed and crazy, we are still a family and we love them. We could never have gotten to this point without a lot of help from other kids and parents who carpool, and help us out. I'm sure they must think we're horrible and NEVER pulling our weight when it comes to ride sharing, etc... but we're trying to change than and pick up our own slack now that Max is getting older.

Okay, so I've established that we suck as parents, we have no friends, no social life, and no money. (I mean, who wouldn't want to hang out with us??? We sound like such fabulous fun people!?!)  What I failed to mention is that we will celebrate 10 years of marriage this fall. I can hardly believe how quickly it's gone or how much we've been through! I know many couples would have fallen apart and we are blessed to be together today. It's not been easy. We have both  had to work really hard to find ways to make this life work. It's not what we planned, not what we wanted, but it's the life God gave us, and luckily, he gave us one another. I could never have picked a better partner for all of this. I can't even imagine my life without him. We've planned our FIRST overnight away from the 3 kids. We've only going downtown, but the grandparents will come and stay here. We know we'll be close enough to come back if needed, but we're also hoping for a first night of sleep and peace and couple time... in more than 4 years. Wish us luck!!!

Friday, April 26, 2013

Why I walk...

We're just 2 days away from the March for Babies. Here's a reminder of why we walk...

Saturday, March 9, 2013

Sick Little Man

Poor Max had a rough start to 2013!

He came down with Norovirus in January, a HORRIBLE new stomach bug that hand sanitizer can't kill. We had to bleach and Lysol almost everything. Troy and I had to call a sitter at 11p.m. and rush him to the ER, when he vomitted more than 50 times.  His blood pressure and blood sugar were low, he was white as a sheet and his eyes rolled back in his head. It was horrible!!! By the next day, Troy and I both had it was well, but not as bad. I made a second trip the ER with him on day 2. We had to keep him hydrated, but managed to keep him from being admitted.
First trip to the ER, very sick boy, getting ready for IV meds and fluids

Second trip to the ER, hoping they won't stick me again!

Daddy's chair was pretty much my home for a few days.... too tired to get up, even to play.

We weren't so lucky just a couple of weeks later. This time he had RSV. It's a respiratory virus which isn't bad for most of us. But kids with compromised lungs like Max, it's the enemy! Within just a matter of hours, he nosedived on us. I took him to the urgent care where they did a chest xray, tested him for flu and strep and sent us home. I was able to grab a quick shower before his breathing got worse and we just couldn't keep his oxygen levels high enough. So I rushed him back to the ER, where he tested positive for RSV and we were admitted. He spent the next 3 days on oxygen and finally came home on Valentine's Day. We've had to keep him home from school for these 2 weeks post discharge, just so he could rebuild his immunity back up. It's the same virus he had shots for his first winter and just 2 shots last year, so he could get tubes placed in his ears. We knew this was the first year we'd be at risk, but didn't expect it to be this bad. Now his doctor will request the shots for him again next year. They are almost $2000 each and he'll need 5 over the winter... so insurance companies don't like this. But, after his hospital stay, this could be cost effective for them!

Quickly on oxygen to help me breathe!

Snoozing in the ER, until they can move us upstairs

Finally in a room around 8a.m., Daddy is on his way after dropping kids at school and Max is finally sleeping!

I took over Mommy's chair for awhile... just for a change of pace.


And more sleep... by rarely letting Mommy move from holding my hand!

Desperately in need of wheats... it's the only thing he'll eat!

Cynthia made an emergency Wal Mart run for 2 boxes of wheats!

Our caged little money is feeling better, off the oxygen and FINALLY ready to go home!

We're just glad to have him finally feeling a little more like himself, eating and drinking again, etc... We've got him on Pediasure, just to put some weight back on him. He lost about 5 pounds, which is a lot when you're only about 30 pounds!

Hello Blackbird!

Ella's first dance competition was this part weekend. It was crazy with all 5 of her dances during the day Saturday. I was up at 4, Ella was up at 5. We were in the car by 6, downtown by 630 and in costume, warming up by 7.  We didn't leave until after 11 that night. LOOOOONG day for both of us!

But, she was amazing! She danced her solo routine around 8 a.m. Daddy and the boys came to watch before Alex's basketball game. She did such a great job. It was the best I've ever seen this routine look! I was just so proud of her and she was proud of herself. Her toughest teacher met her when she came off stage and she said "Mom, Miss Christina smiled at me and told me my leg was even higher than she thought I could do it! She was proud of me!" Love that girl!

 Here's her solo routine

I laughed at awards when she sat with her fingers crossed, both hands... watching and waiting. She won 1st in her division and 5th for overall high scores. She came home with a pin, plaque and a trophy (which she's never had before, so that was HUGE) Of course, she lost the trophy, which was a catastrophy!!! We were frantic trying to locate it or get her a replcement. Luckily, the big girls came through. They had extra trophies from their groups dances, which were also first, so same trophy. Her big sister dropped one by on Sunday and made her day!

Group dances were fabulous too.

Getting ready for lyrical line "Carry Your Candle"

Beautiful production "Mickey's Clubhouse" backdrop designed by my brother's girlfriend, Sandy

I actually caught a shot of my Pluto! It's tough with 90 girls on stage at once.

"Greatest Star" musical theater girls ready to go.

Plutos (pre-noses being drawn on by me)

The day after... just after Caitlyn's mom dropped off her lost trophy and her 2nd place costume award!      

Here is the production.... was great for their first time on a big stage!

We have 3 more competitions, plus  nationals... but she's off to a great start!!!


Alex had such a great first season playing basketball! His team "SMASH" was made up of a few buddies from school and a few new friends too. With Ella having dance Saturdays (basketball game day) and Max being sic, I only got to see 3 of his games!!! But Daddy was there for all of them and the practices. (We divide and conquer. Heaven forbid Max ever wants to do an extracurricular activity or sport!!!

I caught a little video today on my phone of him in action... He never made a basket. But in the first 3 games, he never even touched the ball! By the final game today, he brought the ball up the court, passed twice to other boys on his team, got a loose ball and even shot once and hit the rim of the basket. (he couldn't come close to the basket or even dribble when the season began) It was a great first try for him and most of all he had fun! Love our little baller!

(Horrible quality since I shot on my phone. His team is in yellow jerseys and he's number 4.)

Monday, February 18, 2013

Gone... but not forgotten

Yes, I know it's been 5 months... but life has been in full swing here.

We're hanging in there, but we're broken. In lots of ways.

We have one another. We have faith. We know God will help us find our way...

We appreciate your continued love, support and prayers.

Wednesday, September 26, 2012

What doesn't kill you...

Really, that's the point we've come to. It's Ella's turn to have trouble right now. She's struggling in school this year, not that it's something new, but this year, she has noticed that she is different in the way she learns and does things in the classroom. It was a rough start to the school year, and she just didn't want to be there. We talked a LOT and finally she admitted that she was having trouble and was afraid to ask for help. She said "I can't do it and everyone else can" or "I'm embarrassed to ask, because everyone will know that I can't do it."

We've known that she had trouble with backward letters and paying attention, and following directions, but what 5 or 6 year old doesn't. Now that she's 7, it's more obvious that is maybe more than just maturity, it may be a learning or developmental or vision problem. So we've met with her school (second meeting today), we have her scheduled for a full round of tests, and she's meeting with the school counselor to talk about the anxiety this is causing her, and how she can calm herself and just work through problems and questions in her own way, and at her own pace.

It's hard, because she's been so upset and that's the worst thing for us. I don't care if she's a "D" student for the rest of her life. I want her to try her best and be happy. But she's not happy lately. She's become a bad sleeper, she has stomach problems which she's now on adult medication for, and she's been anxious and upset. Usually, she takes it out on us, and while we understand, we want our sweet, loving little girl back some days.

A friend recently said "I feel so bad for you! Two kids who may need IEP's and special help in school!" and I thought to myself, really, that's okay, I'm good with that. When you spend months, even a year just worrying that a child will die at any minute, fighting to keep that child alive, breathing, eating, etc... this seems like a drop in the bucket. Yes, I'm sad for Ella and I want things to be easier for her. What mom wants to see her child struggle. But for us, her parents, this we can take.

It won't kill her. It sounds simple, but it's the truth in this house. As long as it won't take you from me, we'll deal with it. We'll face it together and we'll do the best we can... as long as we have each other, we have everything!

Pray for us and for our Ella. Pray that God will give her some peace so she won't stress so much about this. Pray that we'll find the answers to help her in anyway we can. Praise God for her wonderful teacher that's working with us to make Ella's classroom experience the best it can be. God has a plan for this, and we're waiting to see what that plan may be...