Spring is here!

Spring is here, spring is here! I don't think I've EVER been more happy to say hello to spring. We are eagerly waiting for the birds to start frequenting our yard and for the big, beautiful trees to start turning green. The sunshine and warmth we've experienced recently has helped improve moods all around our house. Last weekend we were able to enjoy an OUTSIDE fire for once! Ahhh..

The boys are as cute and funny as ever. Since it's been warmer, they've been exploring our backyard and making up creative imaginary movies and games to fill their time. Everything usually turns into Pokemon somehow and there are fake "battles" that take place. The way these two talk back and forth about Pokemon reminds me of two old men talking politics. They are quite schooled in the Pokemon world and Elijah especially knows very specific details about EVERY character. "Oh, him? Yeah, he's on page 97 in the Pokemon manual. He weighs 237.4 lbs and he is 7'9"."

Do you see Sammy's Sharpied nostrils? Yep, constant antics around these parts.

School has been going great for both boys. They are both still enjoying chess club on Wednesday afternoons. If you asked either of them how our winter was, they'd say, "Awesome!"

I recently brought Elijah to his 6-month urology check-up and everything checked out great! They did an ultrasound of his one kidney (we hadn't had this looked at for years) and it looked wonderful. It's nice and big, which is great since it's taken over the other kidney's job as well as its own, and it's functioning well. We've continued to cath him daily since his surgery last summer and it's been working! Third time's a charm.

His well visit last week was great, too. Dr. S recommended that he see an orthotist for shoe inserts to help with his very flat feet. He's been experiencing leg (knee, I think) pain for over a year and the flat feet could very well be the culprit. That appointment is on Monday!

Other upcoming appointments in the next few months: cardiology, ENT, pulmonology. We are also in the process of getting him some extra assistance through the county/state and once we're through all the paperwork this will be GREAT to get him some extra help! He's doing so great. We are constantly so proud of Elijah and Sammy!

We hope you are all doing great! Work for both Dan and me have been insanely busy, hence the minimal posts. That should slow down soonish. Thanks for peeking in! More soon!

All moved in!

I love this pic of Buddy and his half-brother Max playing. They are so funny when they play. :)

We are in our new house! It's been a bit of a crazy week, but we are LOVING our new abode. Going from four months of RV living to being in this incredible house is something I can't even explain in words. We all have been feeling like it's not real. Elijah keeps asking if he's in a dream. Sammy told me that he feels like we're visiting friends. We have spent the past two days getting our things out of storage and unpacking. We have sooooo much left to do, but it's more than livable and we're loving it. None of us want to leave and when we have to go somewhere we get sad!

Quick update on last week's urology visit.. The dilation Elijah had done in June has done the trick so far! This is great news and something we didn't expect. We have had to cath Elijah daily (just takes a few minutes) and will continue to do that for forever if it means we can avoid another surgery.

Although this is a super exciting time for our family, it IS a big change. Elijah particularly is having a rough time adjusting to being in a different place and sleeping in a new room ALONE for the first time since he was three years old. Behavior has been really really challenging, but things will settle down once we adjust.

Elijah has a hearing check-up tomorrow with ENT and both boys have Wednesday through Friday off school. Yay for more home time! If you want to see us in the next few months, you'd best come visit because prying us away will be tough. :)

The Day of Tests

After Elijah's most recent urethral surgery in June, a doctor expressed that perhaps we should check into the possibility that his spinal cord has re-tethered. Since we are still dealing with potty issues AND since he occasionally experiences leg and head pain, we all agreed that it was worth exploring. And apparently cord retethering is fairly common. We set today aside for a handful of tests and although it was only the third day of school, we felt we should get it out of the way. I completely underestimated the time and energy that the day would require of us. I thought we'd be in and out in a couple hours, but we were there for seven and it felt like more. 

Elijah was presented with nitrous oxide (no sedation, thankfully) and just about had a panic attack when "the mask" made its appearance. He thought for sure that equaled surgery and our poor boy melted down. It took all the coaxing Dan and I could muster to get that mask on his face. Once the gas did its job he calmed way down as we talked non-stop about waterparks and water slides and oceans and mountains. He had to be cathed for a few hours and for a handful of different tests that checked his bladder function. We won't get full results until we visit with Dr. R, but we gathered that things seem to be mostly fine on that front, minus the fact that he has a small bladder.

The MRI at the end of the day was a bit of a fiasco. At the last minute the nurses realized that the stents/coils in Elijah's chest (put there during heart surgeries) had not been "cleared" to be near an MRI machine. I knew everything would be fine, but appreciated that they wanted to be positive before moving forward. The MRI was done on E's spine and was intended to rule out the re-tethering. The actual test was a bit stressful for Elijah, even with ear plugs AND a very cool movie that he watched through a pair of glasses. We won't get results from any of the tests for days or even weeks. We are glad to have today behind us!

As always, this boy never stops amazing me. He walks into that place not only willingly, but with a big smile on his face and a skip in his step every single time. If I were him, someone would have to sedate me or carry me in kicking and screaming. We did A LOT of sitting around today and he was so patient and his positive attitude never wavered. We had a chunk of spare time before the MRI and at this point Dan and I were feeling so proud of how patient and brave he'd been, so we brought him to the hospital gift shop and got him Beavy the Beaver. He LOVES this guy. He sat for the rest of the time and talked to him as if the beaver were truly speaking back. "Mom, Beavy didn't understand what you said. Can you repeat it, please?"

Elijah was practically begging for bed tonight he was so tired. We are all going to sleep well! Thanks for peeking in!

Champion Water Chugger

Dan made it back from his work trip safely and we are happy to have him home. The week has been pretty standard, but today we received some news that wasn't ideal. I brought Elijah in for his 4-month post-surgery urology check-up. Things are better since surgery, but not great. He will need to have another dilation, this time followed by needing to be cathed DAILY for six months following. It's a bit of a punch in the gut. We were hoping to put this hurdle in our past. As always, we WILL get through this and come out stronger and hopefully Elijah will be finally be healed from this particular obstacle.

At his last urology appointment (before the last surgery), the doctor required that he have a full bladder and we ended up being in the office for 2.5 hours waiting for his bladder to fill up. This time he needed a full bladder, as well, so when we walked in Elijah declared, "We are NOT going to be here forever like last time." The nurse did an ultrasound to check bladder size and informed us that it wasn't full enough. I looked over and saw Elijah absorb this news and then proceed to start CHUGGING an entire bottle of water. He set it down and asked for a refill and then CHUGGED the entire second bottle, which was followed by, "We are NOT going to be here forever." Sure enough, a few minutes later his bladder was full. We were in and out in less than an hour! :) I loved his determination. I did not, however, like the two very urgent pee stops we had to make on our way home.

Elijah has been waking up super early again (3-4:00a), so a few mornings ago out of desperation I pulled him into bed with me and squeezed him tight with the Hug Machine in mind. It worked! The first night I tried it, he was up at 3:30 and my Mama Hug Machine helped him to sleep until 5:40! He NEVER would have gone back to sleep on his own without it. I don't know if I'll do it every day (I will occasionally need more than 5 hours of sleep/night), but it's good to know it helps!

We don't know much else this week! Have a great weekend!

Surgery today and a few funnies!

I promised corn maze pics, but that'll have to wait! I meant to write a post last night, but slipped away. Elijah's urologist feels comfortable going forward with surgery today even though he is being treated for a UTI. Sammy is off to school and we are just chillin' and mentally preparing for a trip to the hospital. It should be in and out with only a few hours spent there, assuming everything goes as planned. Prayers are appreciated!

We have had a good week! Yesterday brought some behavior that we hadn't seen in a while (home and school both), but I'm attributing it to surgery nerves, the UTI meds (his body NEVER does well with these) and having a substitute para at school.

I have a few funnies to share that I've written down recently. Forgive me if I repeat any of these. There can never be too many funnies, right?

Sammy: Elijah, I want you to plummet!
Me: Sammy! Do you know what the word "plummet" means?
S: Yep! To fall fast!
(this boy is smart!)

As I was coming toward Elijah to hug him, he yelled, "Aaaghhhhhh! A lady who wants to kiss me!"

Waking up one morning, Sammy said, "Ohhhh it feels so ouch in the morning."

I walked down the stairs and heard Elijah say, "There's the little lady carrying a box of snuggles!"

Sammy heard music playing somewhere and asked, "Is George Washington making that music?"

Elijah: Mommy, you are a REALLY good cook. Except...I don't like most of the food you make. But your desserts are good! Yeah, you make REALLY good desserts. Fantastic desserts.

Elijah (after walking a lot through the corn maze): MOM! Me feet are bloply and tired!
Me: What does "bloply" mean?
E: EXHAUSTLY!

After coming out of the bathroom, Sammy announced to us, "Ladies and Gentlemen! I.....HAVE ARRIVED!"

Sammy's super sweet bedtime prayer that is so perfect: Dear Jesus, thank you for this day. Thank you for Sammy, Elijah, Mommy and Daddy. Thank you for breakfast, lunch and dinner. Thank you for LIFE. Amen.

Me: Ugh, my eyes hurt.
E: Why?!
Me: Oh, because I'm a tired mama!
E: I...I really don't have a response for that, interesting red-eyed woman.

The other night Elijah picked up one of my tank tops from a pile of laundry and asked, "Mom, is this one of your boobie packs?"

Second week of school...success!

The second week of school is done! Both boys have been doing great. Sammy has been dutifully picking up litter in his classroom, just as he does everywhere we go. :) Elijah has been continuing to show maturity this week, which is in my opinion in HUGE part to meds. Being used to the way things were last year, I find that I brace myself in certain situations only to find that I can relax. Example: homework! He and I have sat down three times together so far this school year and completed BIG math sheets with at most one mild complaint. Last year there would have been 50 complaints and he would have scribbled over and eventually crumpled up the paper. As was the case during the summer, his threshold seems to be so much bigger. He can handle a full day of school and therapy and homework and not be totally overwhelmed. PRAYING this continues!

I took E to see Dr. M (developmental ped) this week and he was happy to hear how Elijah was responding to the meds. He told me that just observing him in the office he seemed calmer and less distracted. We are going to try a VERY tiny dosage increase in a few weeks. We are also continuing with talk/skills therapy and Dr. M was on board with everything we are doing. We are also having someone come to our home on Monday to do an assessment for in-home skills/behavioral therapy. I'm feeling super hopeful about this because so much of what Elijah needs assistance with occurs in our home and typically in the late afternoon/evening. In addition to being his LUCKY mom, I am also his behavioral/social skills coach and it would be SO helpful to get some help with this!

And of course that's not all! :) Elijah's urethral surgery is scheduled for next Friday, but Dr. R asked that we have pre-op done a week in advance in order to get results from his urinalysis in time. Today I got a call from his primary doctor with the news that Elijah's preliminary cultures showed that he has a UTI! Today we started him on a 10-day course of antibiotics and that likely will push surgery back by a bit (we'll know for sure on Monday).

It's always something, but I want to say that the constant "action" in our lives does not bring us down. Aside from HATING the pain and anxiety Elijah has to constantly endure, we do remember that THIS IS OUR JOURNEY (not just Elijah's, but OURS..we're always right there with him). It's useless to fight what God has in store for us. If we did, we'd be miserable!

I was able to spend a bit of time in Sammy's classroom this week and it was so much fun to see him in that setting. He is thriving and growing and doing so well. I am so proud of my sweet boy! He has been a bit more tired than usual, but he has eagerly gotten onto the bus every morning and hasn't complained about a thing. He adores his sweet teacher (she is the BEST!) and talks kindly about his new friends. He literally has not said a single negative thing about school.

Today we made our yearly trip to the corn maze as a family and we had so much fun! It was our warmest year to date. I of course have tons of photos to share. Next post! Thanks for reading!

Shrieking and appointment updates

Just when Elijah's cough was starting to get a little bit better.. He woke up this morning with some lovely new congestion. We may as well sit back and enjoy the coughing, because it appears that it is never going to leave.

For the past few weeks, Elijah has started making this horribly loud and annoying noise any time he wants attention. It is not a good noise. It's the noise you hear in the grocery story and then think, "What kind of parents does THAT child have?" We have tried a few different approaches to get him to stop doing it and nothing has worked. Yesterday as we were driving in between doctor appointments (more on those below), and as the shrieking was getting totally out of control, I decided that we needed to take extreme measures. Dan and I chatted and decided that we were going to start Screaming Boot Camp. When at home, a scream equals a timeout (which he detests), period. No exceptions. When in public, a scream equals zero attention from Mommy and Daddy (which he detests). In addition to this, we will reward the good behavior and the good sounds, and do all of this CONSISTENTLY. We tried it when we got home, and it helped. A lot! I noticed at least six times last night where he stopped himself before letting out a shriek. I really hope this works. These noises are enough to drive us mad!

Ok, onto the important stuff.. Our first stop yesterday was cardiology. The emotional trauma Elijah endured was worse than I have ever seen. He was a complete mess when the nurse weighed, measured and xrayed him. He did great for the echo, thanks to Veggie Tales and since I was able to have him sit on my lap through the procedure. And he did great with Dr. G, as usual. Toward the end of the appointment, he even crawled over to him, sat at the foot of his chair and just stared longingly up at him.

Elijah's heart function and valve function look perfect. The only concern is that it is very hard to see what is going on with his pulmonary arteries through the echo. This may or may not indicate a problem. There is no way to know right now, but it is a good sign that he isn't showing any symptoms. If blood flow through his arteries is stressed, he will start to get easily fatigued, so this is a symptom to keep our eyes open for. Unless this starts happening soon, we don't have to go back for SIX MONTHS. That is the longest reprieve we've had yet! So, right around October, Elijah will have his sixth heart cath to get a closer look at those arteries and to see how they are functioning. From there we will have a better idea about when surgery #3 will happen. We really couldn't have asked for a better cardiology report yesterday.

Since cardiology took so long, we missed our pulmonology appointment, but we made it to urology. Dr. R was literally in the room for about 60 seconds. "Everything looks great, come back in a year." If everything still looks great at that time we will never need to go back.

We need to reschedule pulmonology and next Wednesday is neurology. Just a couple more and then we will hopefully have a nice break, just in time for summer.

Thank you for checking in on our shrieking munchkin!

Good stuff today

Brushing his teeth before bed

Elijah's urology appointment went really well today. Well, most of it went well. The waiting room in that clinic is always insanely crowded and the wait to get in to see the doctor is always horrendous. Once we got in, the nice nurse talked us through what she was going to do and asked us questions about his recovery in the past two weeks. When it came time for me to lay Elijah on the table to get the stitch and shunt removed, he knew right away that something was going on. He latched himself around my neck (ooohhhh, this breaks my heart!) and started to scream. I got him on the table but he still had my hair in his hands and he refused to let go. Poor kid, so traumatized by doctors and nurses and medical-hospital crap. The nurse got everything removed pretty quickly and then he was fine. He had some residual whimpering and crying, but it didn't take him too long to recover.


Your turn, Mama!

Dr. R stuck his head in to peek at things and said everything looked great! The surgery was a success and everything is healing up nicely. He still has swelling and a little bit of bruising and has acquired a yeast infection from the Bacitracin we've been covering him with. Other than that, it couldn't be any better! YAY! We haven't given him a proper bath since before his surgery since getting stuff into his shunt could be painful and dangerous. Dan gave him a bath this afternoon and he looked like a brand new baby afterwards. We have a follow-up with urology in 4 weeks (not rid of them yet) and then probably another follow-up in 6 months.

It feels so great to have this behind us. Another thing checked off the list. Thank you, GOD!


I wanted to share a cute new thing Elijah has been doing lately. He has a gigantic Baby Einstein book that he loves to look at and one of the pages in it has a bedroom scene with a little boy going to bed and all of his toys are lying on the floor and on his bed. There is a little toy rocket on his floor, amongst many other things. Elijah CONSTANTLY turns to that page and points repeatedly to that rocket and looks up at me with an excited grin. I say, "Yes, rocket!" and then he points to the telescope. Back and forth between the two things, as if there aren't 30 different things on the page to point at. Astronaut? Pilot? Hmmmmm.....

A friend of Dan's is over tonight, so Dan is grilling up some yummmmmy spicy chicken and potatoes. I think I'll go gobble some up and then come back upstairs and watch a movie so they can have some boy time. Plus, I'm not too interested in watching tennis. Right now they are having an argument about Roger Federer. Dan is saying how he isn't American and how he might beat the AMERICAN Pete Sampras' record, and how that is anti-American. Dan's friend replied with, "Well? Jesus wasn't American!" :) After much back and forth discussion about this, I just heard Dan say, "I divorce you!" and his friend said, "You know what? Relationships end!" I think I'll stay upstairs.

Random things

- Tomorrow is Elijah's 2-week post-surgery follow-up with urology. He will get his shunt removed and hopefully that will be the last time we'll need to see urology ever again! (Thankfully it is the doctors we like the least that we'll be able to ditch and the ones we like the most that we'll keep forever.)

- He seems to be getting another little cold. We're praying for a SMALL cold, and for this sickness crap to be over with soon. It's summer! What in the world is winter going to be like?

- For the past week or two, when I put him down in his crib to go to sleep he grabs his favorite blankie and scrunches it up into a ball and then lays himself on top of it. Then he smiles up at me like, This is the best, Mama! I'm sooo comfy! He is an absolute angel sleeper. He never fusses and he doesn't make a peep for 12 straight hours.

- He is such a sweet, lovey boy. When I get home from work, it is obvious that he wants to be physically close to me for a bit. He sits in my lap facing me and we "talk" for a good 10-15 minutes before he starts pointing at his trucks. He has even started putting his arms around my neck and pulling me close to him, like he wants me to hug him. Any time, sweet boy, any time.

- I didn't think he could possibly eat any better, but I was wrong! He can fit SO MUCH food in that belly! Sometimes I wonder if I should stop feeding him, even though he keeps opening his mouth up like a starving little birdy. He has been eating practically everything we offer him. All kinds of veggies, fruit, meat, everything. Mealtimes are rarely stressful these days and it is so lovely. He is even drinking milk again (with a little strawberry syrup help)!

- His development is really blossoming in all areas. He points to EVERYTHING and wants you to tell him what each thing is. He listens very closely. If I go through a book and tell him what each thing in the pictures is called, he can usually go back and point everything out by himself when I ask him to. He is finally starting to use his legs a little bit more, and I know I've been saying this for a month now, but he is on the verge of crawling. He's attempting to mimic a few of the words we say, even though they are definitely a unique interpretation of what the word really sounds like. It's very cute, though, and it's a positive sign of language development.

- We are hoping to get him into physical therapy twice/week from two different places to get him as much help with his gross motor development as possible. We will have to get insurance approval (of course), and then we will have to see if Dan and I can find two consistent days/times every week to make this happen.

- Cardiology check-up is next Thursday. It will be almost FIVE months since heart surgery. Wow! We were told at his last visit to expect another heart cath in October (yuck!), but other than that, we're expecting a positive report next week. We really have no reason to believe it will be anything but that.

Surgery is set

Dr. Gremmels cleared Elijah for hypospadias surgery, so the date is set for February 12th. It should be a 2 to 2.5-hour surgery and he'll need to stay in the hospital for one night. It will be good to get this out of the way. One more hurdle behind us.

We are heading out of town for a few days. We're going to the Wisconsin Dells to let Elijah splash around in the indoor pools. I will likely take plenty of pictures and share them when we get back (sorry for the lack of pictures this week, I was focusing on the Heart Walk. Please help Team Elijah, if you haven't already!).

I can't possibly write without saying something about the chubby boy, right? He has been really fun to spend time with lately. I have spent every waking, non-working minute with him because I don't want to miss any of the cuteness! It's strange, though, because I'm starting to wonder why he will accomplish a developmental goal and then he will stop doing it. It's like he wants to show us he can do something and then he gets bored with it. He was trying to clap his hands when he was four months old. He did it for a few weeks, and I haven't seen him do it ONE TIME since then. I know he can do it! He claps his blocks together all the time. He just won't do it with his hands. He was saying Mamamamamamamama over and over two months ago. He did that for a few weeks, and now he won't do it anymore. He did the motions to the Itsy Bitsy Spider over a month ago ALL BY HIMSELF and I haven't seen him do it again since. The same thing goes for physical accomplishments. We have seen him bear weight on his legs. He knows how to do it, he just won't! We know he can use his arms much more than he does. What's up with this? Stubbornness? Laziness?

Yurinator

It's hilarious that Elijah's urologist's first name is Yuri. Back in college, you know his fellow frat boys were yelling, "The YURINATOR!! WWOOoooooooHHOOo!" Actually, maybe not, because based on the way he treats us, one might think he didn't have many friends. We realized today how lucky we are that all of Elijah's other doctors have COMPASSION and BEDSIDE MANNER. It is obvious that this guy is very good at what he does. He does not falter in his knowledge at all and is obviously a confident, skilled doctor and surgeon. This is the only reason we will tolerate waiting for an hour in his waiting room only to spend 90 seconds talking to him, at which point he says to me in a very degrading manner, "We want what's BEST for your child," as if I don't want what is best for my child!

He had told us after Elijah was born to come back when he was 11 months old so that we could do his hypospadias surgery when he was 12 months old. So here we are, in his office when Eli is 11 months old, just like he asked. He asked about Elijah's upcoming heart surgery and we said we don't have a definite timeline but that we're guessing it will take place June-ish. He said, in a very you-should-have-known-this tone that in order to get his hypospadias repaired, we first had to get clearance from cardiology. Uh, ok...sure, we can do that, but why did we drive all the way to downtown Minneapolis just to hear that? This is when he said, "We want what is BEST for your child. Why would we do surgery now if cardiology doesn't clear him for it?" Angry Mommy responds with, "That's why we're here! We do want what's best for him. We're here because you told us to come back at this time." And he exited the room like a lightning bolt.

So now we'll call cardiology and figure out whether his hypospadias can be fixed now or if it will have to wait until next fall.

If only ALL DOCTORS treated their patients like our dear Dr. Gremmels does. We love Dr. Gremmels! And Dr. Snook! And Dr. Moga!

I have to share one funny thing from our appointment today. As we sat for ONE WHOLE HOUR in the cramped waiting room, we were able to entertain the other people sharing the waiting room with us. Elijah was soooo loud, jabbering and grunting non-stop. There were a few other babies just staring at him like, WHY ARE YOU TALKING SO MUCH, YOU CHUBBY, CURLY-HAIRED BABY? It was really funny. Other parents kept chuckling and saying to us, "He likes to talk!" It seemed like he really enjoyed having an audience. If someone got up to leave the room, he would look at them as if to say, WHERE ARE YOU GOING?!? I'M ALMOST TO THE FUNNY PART!


I know I've probably worn out my welcome for prayer requests, but we need more prayers for Baby Isaac, who is having an unexpected heart surgery tomorrow. Poor little guy, he and his family have been through so much. There has been so much going on this week with my heart babies! :( It has been a really sad week. Thanks for praying for and following the angels Madeline and Kate. They are in Heaven now and watching over all of us!