Monday, April 9, 2018

A Picture's Worth a 1,000 Words... February - February in no particular order

Halloween 2017
Wonder Woman and Aaron Rodgers. 

July 2017
The dog is not supposed to be in her bed. But I absolutely could not shoo him out. These 3. 

April 2017
Judah is always ready to strike a pose. But if you're that adorable...

April 2017: Driveway shenanigans

Disney World, February 2017
Highlights: ice cream, dancing in the streets, meeting Olaf
Bummer: getting influenza & sleeping through the last 2 days


Judah's 8th birthday was on a Sunday. Best. Day. Ever. Yup. That's us at church. 
Again. Birthday on a Sunday + church babies = Best. Day. Ever.


June 2017: YFC Over the Edge
I was so proud of Judah for tackling this wall!

July 2017: This is what happens when your parents work a fireworks tent.
Notice Judah's head gear. Dad's ear protection is a must when lighting ANY kind of firework.

Summer 2017
Now that his feet can touch the bottom, he's much happier in the pool!

September 2017
Again with the babies. Seriously. He is ALL about the babies!

August 2017
Lots of excitement at school about the solar eclipse!

August 2017
2nd grade open house.
There's nothing more exciting than graduating to your own desk.

August 2017
He LOVES the Omaha Children's Museum and the baby dolls/hospital nursery there!
His favorite OCM date is Grandma💖


August 2017: A Family Fun Night activity from Judah's Bible
Dress up the way people did in Jesus' day. You might even serve a Bible times meal. Read Matt. 10:24-25 & talk about what it was like in Jesus' day, and how we can be like Him today. (NIV Adventure Bible)
Thanks to Judah, we had 100% participation AND a really good time together.

September 2017
Grandma found a guitar for Judah at Good Will. He loves "playing" it and making up lyrics about Jesus.

September 2017
Yes, the baby love is contagious. We love babies so much we plan play dates with them. And don't invite their parents.  
October 2017: PHS Junior Cheer Clinic
Judah was the sole male participant in this clinic put on by our HS cheerleaders. Pictured is Shelby. Judah's favorite cheerleader, affectionately known as "my cheer coach!". The junior cheerleaders got to cheer at that night's football game. He nailed it. 


October 2017: Camping on the coldest weekend of that month.
Naturally.
And it was a blast.

December 2017
Judah got to meet a REAL LIVE AMERICAN NINJA WARRIOR!
Judah might have been slightly more excited about meeting her baby.
We will forever be fans of Rose Wetzel.

April 2018
Judah loves "helping" Eli with sound at church.

March 2018
Judah is also SO proud to watch his big brother perform on stage.

February 2018
Ollie is sometimes the best medicine. 

January 2018: Saturday morning reading with Dad. Judah's got a Handyman magazine.
Of course.


July 2017: Family Vacay in Estes
Rocky Mtn. Nat'l Park was a definite highlight for all of us!
August 2017
1st day of school



December 2017
When your big brother Ezra has cool new headphones and you want to be just like him.






August 2017 - April 2018

I’m home with a sick little boy today. And while I don’t want him to be sick, and I certainly don’t like knowing that he could get very sick very quickly, spending a day at home with him is also a small gift. I love the extra snuggles and how amplified his “Mama’s boy” side becomes when he’s sick. And I’m thankful for the opportunity it provides me to slow down. It’s like getting a free day in the week. An extra weekend day. Another day to not run around like a chicken with its head cut off. Not like I ever do that. But, if I did, obviously I would do it with grace and sophistication and a glamorous flair.

I’m getting off track.

Shocker.

I’m thankful for the time I have to sit here and update you all while Judah sleeps the morning away. I have been awful about doing that. Worse than awful. But I’m here now. So here we go…

In the last few months we’ve had a few new things develop for Judah.
The GOOD:
*He hit grade level academically at the end of last semester! I don’t know if or how long that will last, but it’s a huge accomplishment and a testament to his team’s consistency, creativity, and hard work at school.

*His language skills - primarily his ability to communicate clearly as well as advocate for himself - have improved by leaps and bounds! This makes a HUGE difference in the peer department. We believe that this growth has allowed him to feel more like “one of the guys” at school. PLUS the skill of advocating for himself is a MUST for Judah, so I’m thrilled to see that happening more consistently.

*Judah has been relatively healthy these last several months. No hospitalizations. No major illnesses. No surgeries. Thank. You. Jesus.

*2nd grade has been very challenging for Judah. We see the gap widening between him and his peers emotionally, socially, academically. It takes him longer to adjust to increasing demands at school and make necessary transitions. However, he has come so far this year and grown so much! He’s had so much success in 2nd grade - including significant wins in the area of independence - again, thanks to his team! And his, what I like to call “inner circle” of buddies, who help him along and encourage him throughout the day. God hand-picked those boys from the beginning, and each one is a gift I’m tremendously thankful for.

*Regardless of the hard things that are thrown at him, and the day-to-day tasks that are just plain challenging for him, Judah’s enthusiasm, excitement, and love for life continue to thrive and inspire. Not to mention the fact that he is SO. FUNNY! Seriously… Every. Single. Day. He makes up jokes, or spits out lofty definitions of words or grammar rules, or comes up with some obscure fact that leads me to believe he’ll make millions on Jeopardy someday. I’m literally giggling to myself just thinking about it. He’s so funny.

The Not So Good:

*A few months ago Judah underwent a blood pressure study. He wore a cuff for 24 hrs. and I documented when he woke up, what he did throughout the day (read, draw, read, write, read, snuggle with Mom, read, snuggle with Ollie, read, climb on his brothers, play school with his sister, read, read, read. He’s not the most active kid I’ve ever known.), and when he went to bed. The test showed that he does, in fact, have high blood pressure. We’ve been anticipating this for quite awhile due to his kidney disease, but it’s still a bummer when it becomes official. His specialist added a medication and has monitored him closely, and he’s doing well. Thanks to the med, he’s in a “maintain” position again with the disease, and he should be good here for awhile.

*We had a little bit of a scare on the urology side of all of this, but that led to some answers. Long story short - and for the sake of Judah’s dignity - we have discovered that a consequence of the increased fluids needed for the kidney disease is a somewhat unhealthy bladder and the inability to recognize the need for a bathroom break. That, coupled with trauma from catheterizations and invasive tests since birth, have made this an incredibly challenging and baffling issue for a looong time! I think now we’re headed in the right direction. Judah gets to see a couple new specialists (one behavioral) to help him move forward and hopefully see some huge success in this area within the next few months.

*Judah had his annual check at the BoysTown craniofacial clinic last week. Procedures and repairs that have been put off for years because of his age are now being put on the schedule. He’ll begin orthodontic work within the next month or so - a widening of his upper jaw. And he’ll have a minor surgery within the next 2-3 months (hopefully) to elongate his soft palate. The orthodontic work makes me nervous. His dentist has worked patiently with him for years to get him to the point of being able to get through a cleaning and normal check without anxiety or tears. Literally. Years. I fear that one appt. with ortho will change that. He has an extremely difficult time differentiating between doctors. When one does something he doesn’t like, he’s anxious about all of them. I have a couple of strategies in my back pocket, a couple ways I can advocate, but I’m still nervous. Years of practicing trust, and I still battle anxiety. God keeps using that to call me to Himself.

Sometimes God rescues Judah from those things we fear for him. Sometimes He doesn’t. I choose to trust God anyway. What alternative do I have? Only God is sovereign. And only God is enough for Judah. And me.

Thanks for reading and praying! More to come...

Thursday, December 29, 2016

Getting To Know Jude 🎼

Does anyone else hear Julie Andrews singing "Getting to Know You" right now? No? Just me then? Ok. In an effort to catch everyone up, I decided to write about things that Judah loves. Or does not love. What makes him tick. And what keeps us laughing. I have no idea how many installments there will actually be. Or in what order they'll show up in. I can promise, though, that they'll be entertaining, inspiring, and even challenging. Because Judah is. 



Judah's favorite book is his Bible. Hands down. No contest. Every time. In July he was given his very first "real" Bible from Lindsay, one of our Kids Life directors at church. 
**Also something to know about Judah: He loooves church. The people, the music, his friends; but most specifically Kids Life. Every Sunday morning our pastor - or whomever is teaching - calls the kids down to the front row for their own introduction to what they'll be learning in Kids Life that day. Most mornings Judah can't even wait for the invite to the front. He knows it's coming. He's almost always out of his seat already - sometimes even headed out to the aisle...or down the aisle - and when he finally hears, "...kids come to the front" he cheers and claps, or exclaims and claps, or squeals and claps. There are several versions of his elation. Once in front, there are always questions for the kids to answer; and regardless of the question...sometimes before the entire question is even asked...there's Judah, front and center, waving his hand in the air, practically bouncing right out of his seat, like the only thing he's ever wanted to do in life is answer THAT question! I'm always a little nervous when he gets called on, which is a lot. Who doesn't want to hear from the most enthusiastic kid in the room? I just never know what he might say. There is always some kind of hesitation on his part. He's DYING to answer, but when he FINALLY gets called on, he suddenly doesn't know what to say. Or something. Sometimes it sounds like this: "Um...um...ummm...aaahh...I forgot." More often it's, "Um...um...ummm...aaahh..._____" fill in the blank with something truly adorable and endearing and right. Thanks to all that Bible reading he does in his new favorite book, he can pretty much answer any Bible story question correctly. OR any question from the previous week, because he has a memory like...something that has a stellar memory. His ability to remember things never ceases to amaze me. Once the kids are dismissed, they all head off in a line to go to Kids Life. And there's Judah. The only one in the whole crew aged 5-11 bounding and skipping and clapping along the way.**
He has taken that Bible everywhere! It lived in his backpack for a little while, because he insisted on having it at school with him. It's been on all kinds of errands. He carries it around the house, and then forgets where he leaves it. "Mom, where's my Bible?" is a pretty common question around here. Before that dear Book was even 6 months old I had to repair the binding and cover with book tape. It had come off completely. A good problem to have I'd say, given the fact that the "wear and tear" had come from so much love and affection. 

He loves to page through His Bible, and look at the different sidebars and text boxes filled with all kinds of interesting information. But he also loves to sit and read it. Just read it. He'll find a passage that suits his fancy at the moment (how he decides I have NO idea) and just read. Sometimes aloud, which is my absolute favorite. There is nothing more precious than listening to Judah's sweet voice - his expression and tone - as he reads God's Word. 

I can always tell when Judah's been reading, whether I've actually seen him do it or not, because of the questions he'll randomly ask me. 
"Mom, who was Moses again?"
"Mom, how old is Jesus?"
"Mom, what's a commandment?"
"Mom, why did Jesus have to die on the cross?"
"Mom, were Cain and Abel brothers?"

Then there were the few weeks he was completely enamored with the story of Adam and Eve. He thought it was hilarious that they were naked. Once he finally understood that they were married ("like you and Dad, Mom!") I heard a lot of, "Mom, Adam and Eve were married, and Eve became pregnant!" I think his fascination with Eve being pregnant goes back to his total and complete love of babies. A "Getting to Know" post for another time. 

I have to be honest. I don't understand Judah's fascination with his Bible. He esteems that Book more highly than any other book. And he has A LOT. He's 7. What 7 year old does that? Somehow he knows it's special. He pores over it. And I'm actually a little jealous. To have that kind of wonder, enthusiasm, and childish delight for my Bible. That would be...life-changing.

I can't begin to guess what goes on in Judah's head - or heart - when he reads his favorite book. I have no idea what he actually understands, or to what degree he grasps the Truths he reads there. I do, however, believe absolutely that his love for that Book is a gift. God gave that to him, and I believe that He's using it in ways I don't see yet. I don't know what salvation Truth Judah is able to comprehend, but I know he has some kind of relationship with Jesus through his Bible. I love to think about how God might use this someday. Or what he might whisper to Judah's heart as he reads now.

Judah also has a thing for head gear. He wore this fedora to church on several occasions. He melts my heart.


Sunday, December 25, 2016

Welcome, Friend

3 months ago I sat down and started a post. Finally. And then...here we are 3 months later, trying to pick up where I left off. Story of my life. Since my last post I've learned something about myself. I am an all or nothing kind of person, and I don't do multiple things at a time well. 3 weeks after my last post I was offered a job at my kids' elementary school as a paraprofessional. No way could I turn it down. God was handing me an opportunity to invest in and impact kids and parents! I'm really good at my job. And God has done really amazing things since putting me there! But, I haven't written in over 2 years. So there's that.

Writing is very important to me. God uses it to teach and change my heart. It's one of the ways I love to worship. I have missed it. A lot. I know it's something I'm supposed to do, because it makes me love Jesus more, and He uses it for more than just me.

Today Jared gave me a Chromebook for Christmas. I'm ridiculously excited about it, because it makes writing so accessible! I've been without a good computer and my iPad doesn't have a keyboard. It's been easy to make excuses...but no more!

I feel a sense of relief sitting here writing. Like an old friend came to stay. I love it. I'll do my best to catch everyone up on Judah. 2+ years will be hard to cover, but pictures are worth a thousand words, so I'll try to include plenty.

Merry Christmas!

Thursday, March 19, 2015

From the 4th Floor...BIG news!

After a long night with a couple very unpleasant "happenings" for my sweet boy, the big news this morning is that Judah has finally starting things moving along on his own! Just in the nick of time. He had about 10 minutes left before they were going to repeat a procedure they did last night. Close call. He's not completely out of the woods yet, but he should be on his way. The Urology Fellow told us that as soon as he was able to go on his own, we'd be able to go home...but, of course, it's not quite that simple. They're going to make us wait around for a bit...for observation...just to make sure...you know. While I appreciate their thoroughness, Judah and I are tired! He keeps asking when he can go home. 

Thank you to each one of you who has sent or brought Judah little surprises. It has made his stay so much easier, and totally helps now as we wait! 

He had an awesome surprise this morning: the Pet Therapy dogs came to see him! Oh my goodness, he was SO excited! I haven't seen him that animated since Monday morning. His face says it all! 
Roxie & Olive to the rescue! Judah thinks that Ollie should come to the hospital too. Of course.



Wednesday, March 18, 2015

From the 4th Floor...Small Setback

Well, we're still here. Doctors have this thing about being able to "void" after surgery/epidural/catheter, and Judah hasn't yet for whatever reason, so we are here for the night. We fully anticipate being able to go home tomorrow morning, barring some unforseen complication or inability to..."void". I'm disappointed - I had gotten used to the idea of saying goodnight to Jared and the kids at home - but I know we'll get there sooner than later. And if there is something else going on that we just don't know about yet, well then, I'd rather be here than at home. 

So, goodnight from 4. 

Psalm 18:1-2
I love you, LORD; you are my strength.
The LORD is my rock,my fortress, and my savior; 
my God is my rock, in whom I find protection.
He is my shield, the power that saves me,
and my place of safety.


From the 4th Floor...Small Victories

I decided to look at the book of Jude. God captivated my heart in the second half of the very first verse. 

"I am writing to you all who have been called by God the Father, who loves you and keeps you safe in the care of Jesus Christ. 2 May God give you more and more mercy, peace, and love." 

God knows my need for feeling safe and secure. Not only does this verse tell me that I am loved and I am safe; but it reminds me that only HE can satisfy. Regardless of what the next week of recovery looks like for Judah, God's Truth stands, and we are safe & secure, cared for by a gentle, intimate God, and His way is the best way. Again, I'm reminded to ask Him to allow into our lives (including Judah's) those things that will draw us into deeper intimacy with Him and make us more like Him! 

Jude 25
"All glory to him who alone is God, our Savior through Jesus Christ our Lord. All glory, majesty, power and authority are his before all time, and in the present, and beyond all time! Amen."

As we speak, Judah is sitting in bed, completely unplugged! The epidural is gone, the monitors are gone, the IV fluids are gone! The next few hours will show us how ready he is to go home. For now, with a belly full of macaroni and cheese, he's ready for a nap;)


From the 4th Floor...Small Miracles

It's been truly amazing to watch Judah's initial recovery from this surgery. We came into this with a "hope for the best, prepare for the worst" kind of mentality. I think over the years I've developed somewhat of a pessimistic attitude as I come into situations like this...mostly so that I don't experience disappointment or frustration like I have during past hospital stays. But then, when Judah seems to come through with flying colors, I wonder if, in my heart, I've shortchanged God and really just lacked faith. I don't know. I guess I just don't know how to be or what to think or how to prepare sometimes. Anyway, like I said, this super kid has done extraordinarily well! As of this morning, his urology and anesthesiology teams couldn't be more pleased with his progress! They think he's ready to transition from the epidural to an oral medication for pain management. Long story short, at 11:00 he's receiving an oral dose of the new med, and 30 min. later they plan on pulling the epidural. Then we watch him for another 3 1/2 hours. This med has some potential side effects, so we need to see how he handles that. There are alternatives in place should he have any problems. If he tolerates the new med well, and his pain is under control, then the catheter and the drainage tube can come out. If all of that goes well - which is what they expect - he could actually go home later today! My mind is still reeling at the possibility. This is so outside the realm of possibilities that we were given!

After asking questions, talking through different scenarios, seeking out trusted advice, and praying together, we've decided to pursue these steps that will hopefully get him home today. I would be lying if I said I was 1000% confident that this is the right thing to do and that I have zero concerns about it. I'm scared. I'm scared that he'll be in a lot of pain. I'm scared to take him home with this major abdominal incision that's still so new. (I'm sure you mamas out there that have had cesarians can relate.) I'm scared of getting behind the pain, and then having to play catch up while he's the one that suffers. I'm concerned about the potential side effects of a new med. And how effective the alternatives might be, or what side effects they might carry. Obviously I'm not done having conversations with God about my own trust issues here. Intellectually I absolutely believe that He is at work, He is Judah's Healer, He is completely trustworthy and completely ENOUGH for Judah, and He is in control. But anytime we face an unknown with Judah my Mama Bear goes into hyperdrive and I have a hard time getting what I know in my head to completely saturate my heart. You'd think after 6 years I would be a little better at this. Well, maybe I am. But I'm certainly not as far along in this part of my faith journey as I would like to be. Makes me glad that God doesn't let me stay the same.

So, as I pursue God and His Truth this morning, I will also be thanking Him for all of your prayers for Judah's continued healing and wisdom for us. Seriously, I am SO THANKFUL that we don't walk this road alone! Our support system is ridiculous! I often "brag" about our church family and the incredibly unique community we experience with them, as well as the amazingly supportive community of people I've found through my new job...not to mention our YFC community. We're surrounded! 

Haha! Jared just said he can't wait to see what I'm writing. This was supposed to be a quick update! Tell that to my fingers;) It feels so good to be writing again.

Judah finally got his visit from Trevor AND Ariel - bonus! Needless to say, he is one happy camper.





Tuesday, March 17, 2015

From the 4th Floor III

It's hard to believe that our 1st full day up here is almost over already! It's been a restful day for Judah, but also a busy one! He started his day with lovins from Daddy, his siblings and grandparents; and we enjoyed visits from  Muk, and Mrs. Nebel! I love watching other people love my kids. It's a gift that I don't ever want to take for granted. 

He's been comfortable throughout the day, but we had a glimpse of what the pain could look like when he coughed a couple times this afternoon. He instantly grimaced and cried out, holding his tummy. It was sad to see him hurt, and again made me thankful that he's here being so well cared for. His team here doesn't want him hurting either, and I so appreciate that. 

Things are looking good for him so far. No signs of fever, good output, decreasing drainage, and increasing thirst and appetite. This morning Dr. D. said if he continued to progress well throughout the day today, he could possibly have a couple tubes removed tomorrow. I would love to be able to take Judah for a walk around the floor tomorrow, or even to the playroom, so getting rid of some extra baggage would be wonderful. 

Judah has been such a good sport today. He's tired, but he's had a great attitude. It's fun for me to listen to him interact with his visitors and the nurses that are in and out. He's been talking a LOT about school. He keeps saying he hopes he doesn't miss school, or he hopes he can go back to school. He's been talking to the nurses about Miss Baines, his friend C., and Math. And if I had a nickel for every time he has mentioned Trevor (my Trevor that I love, he says) coming to visit him I would be a very rich woman. Seriously! Trevor is a kid that came up through Campus Life and is now Jared's intern. He's become a part of our family over the years and all our kids adore him. But Judah has latched on to Trevor in his own "mini-groupie" kind of way. I wish I could be here tomorrow morning to see Judah's face when Trevor walks into the room. 

Tonight we had a special family supper with Granny, all together in Judah's room, and are watching a family movie. Judah is winding down again, asking for snuggles and getting sleepy. Soon I'll take the big 3 home and leave my baby here with Dad. I'm happy to go home with my other kiddos, but my heart and mind will be divided until we're home together again. 

Ruth 2:12 says, "May the LORD, the God of Israel, under whose wings you have come to take refuge, reward you fully for what you have done." In context, this verse really has nothing to do with our situation; however, I absolutley love the imagery of taking refuge under the wings of Jehovah. I always talk about my nest, referring to the physical & emotional warmth, security, and comfort I find there. But this is a picture of the intimacy and tender care of our Provider. The security and comfort I find in Him is perfect and unfailing. He is my Foundation, my Rock, my Hope. So I can leave my baby here...because He is also those things for Judah...as well as the Healer and Sustainer of Judah's life. 

He was so SO happy to see his brothers this morning!

When he was finally hungry he just about ate his body weight in graham crackers!

Of course his sister couldn't wait to smother- I mean, love on her baby.

The lunch of champions! The stuff you only get to eat all together when you're in the hospital. 

Checking out some new goodies!

He colored for about 5 minutes, and then crashed. He had fun while it lasted!







Monday, March 16, 2015

From the 4th Floor I

We're up on the 4th floor, our old stomping grounds of sorts, watching Judah rest peacefully. His surgery went beautifully! I don't ever remember getting such a positive report! The dr. is extremely pleased with every aspect of the surgery, and was pleasantly surprised to be able to avoid a couple more complex aspects of the surgery. He was prepared for the worst, but the worst wasn't there! The people here know their way around pain management, so between Tylenol, an epidural and Morphine, Judah is feeling good and getting some much needed rest. The epidural comes out in a couple days, so the Tylenol will become our new best friend. My prayer is that the transition from epidural to Tylenol will be a smooth one for him. 

Today has been a good day, as weird or wrong as that might sound. Knowing that countless people are praying for your baby and you, reading emails and text messages, seeing pictures on instagram, being visited by a friend already - it's a unique experience to be at the center of all that. God is so good all the time. Being on this crazy journey is a constant reminder of that. 

Plus, I love hanging out with that red hot ginger, so I'll take as much of that as I can get, wherever I can get it. Seriously. He's hot. And he carries my stuff. And he brings me hot chocolate. And he says nice things to me. 

Anyway, thanks again to each and every one of you who has taken time to pray, or text, or message, or email, or call. And thanks to all of those I don't even know! It humbles me every time to know that people I've never even met take the time to pray for Judah and our family. 

I'll keep you all posted!