Sunday, May 31, 2009

Vacation 2009 (this is really long)

Dan and I make it a priority to take one childless vacation every year. For the past couple years we have been on a Vegas kick. The food, the gambling, the pools, the hot weather, we love it all. We love the carefree attitude of the city, or at least the part of the city we stay in. No one judges us there. We can let our extreme silliness out (because we are already moderately to seriously silly in the real world), smooching on bridges and fake fighting (kinda weird, but fun), and not feel inappropriate. And did I mention all the good food? And how much we love to eat?

I am always a wreck until we are sitting at our gate, waiting to board the plane. Leaving Elijah for more than a day is tough. I always have all kinds of worries, and this time was no different. But this time I came prepared! I wrote out about a dozen index cards with reminders and good thoughts. I had a few Bible verses that really helped and a few other thoughts. I ended up pulling these out and reading through them a handful of times throughout the trip, and they helped. Overall, I did much better with this Elijah-less time than any time in the past.

Elijah dozed on the way to Grandma's, where he spent his whole weekend (and slept really well).

The plane ride was good. We started this trip being totally sleep-deprived (I don't recommend this), so we took tiny, uncomfortable naps on the plane.

Dan and I love big puffy clouds. Falling through them is cooler, but in this situation we settled for gazing at them.

We arrived in Vegas and excitedly skipped through the airport. It's funny how many people do this. I heard at least two groups of people shout, "Vegas, baby, VEGAS!" as they skipped along side of us. The shuttle ride to our hotel was quick and smooth, and look! Palm trees (and a gorgeous man)!

We like to stay at a different hotel every time, and this time we chose Caesars Palace. It was affordable (we found out why later), so we gave it a shot.

One of the things I love most about vacation is seeing total, carefree relaxation on my husband's face. There is just something about not having anything to do, and seeing him thoroughly enjoy that.

Our room was amazing. It was the best room we have ever had. It was huge.

And the bathroom was awesome. We actually went to bed early the night we got in, in hopes of getting all caught up on sleep and starting the vacation off rested and feeling good. That didn't happen. Despite our early bedtime, I was up at 4:00 a.m. (6:00 our time)!! I couldn't get back to sleep. It was maddening! By 5:30 I gave up and decided to start my day. I took a bath in the awesome, giant, jetted tub while watching the weather channel (yes, there was a tv in the bathroom, too). AAAahhhhh.

We called a few times a day to check in on Elijah (probably too much), and it always gave me peace of mind to get a good report from Grandma.

On every trip we take, I always come away with vivid memories of our first excited elevator ride. We are always smiling, kissing, taking pictures, anticipating the adventures ahead.

On our first night, we headed over to one of our favorite casinos, Bills Gamblin' Hall, to do a little gambling. Dan likes blackjack and I like roulette. We only gamble when we are in Vegas, and we always come with a predetermined amount of money specifically for that purpose. If we lose it, we're done. We always expect to come home without it. It's good entertainment for us. For a while, anyway. By the time our third night rolled around, I was bored with it and ready to put another year between me and the roulette table.

I did horribly at the roulette table that first night, so I stepped away quickly. Dan, however, began his weekend of awesome luck. He was up by quite a bit, and smartly walked away. We went over to Ballys, another favorite spot of ours, and much of the same took place. I was down, Dan was up. Apparently it just wasn't my day for luck, so we stopped. We went to dinner at another favorite place, Hole in the Wall Battista's. I love this place! It is a tiny little dimly lit Italian restaurant that has its menu on the wall and bottomless carafes of vino. Sadly, we didn't take much advantage of the wine because we were having such a good discussion about how we want to live our lives. This is why vacation is good for us! We are definitely a couple who needs occasional recharging, and sometimes stepping away from reality makes things much more clear. Our discussion that night is one that I will never forget. It was good stuff. Dan ordered the chicken cacciatore and I ordered the cheese ravioli. Both were awesome. An accordian player made a stop at our table and we gave him a dollar for being so cute and old.

That was all we had in us that night. We were exhausted and ready for some good (ha!) sleep. The next morning, after my very early bath, we decided to venture out and grab some breakfast. Who knew that Margaritaville served breakfast!? It was tasty, too. I ordered a shrimp and crab omelette and Dan ordered a Mexican omelette that I wished I would have ordered.

After breakfast we got our swim suits on and headed to the pool. It was a good thing we got there right when it opened because there was a line, and the chairs surrounding the pool filled up quickly. Once we found some chairs, we discovered why we got such a good price on the hotel. They were doing construction all around the pool area. We got to listen to a lot of banging noises mixed with music and water splashing. We weren't impressed with the pool, but we are pretty picky pool people. There are three pools there currently (I think they are working on a fourth) and they are just too small for the amount of people who want to be sitting next to them. We made the most of it, though, and got in two hours of absorbing the hot sunshine and doing quick dunks in the frigid (but satisfying) water to cool off.

During our down time, whenever we were changing or showering or waking up from a nap, I would sit on the chair by the window and write in our travel journal. We had a nice view of the pools and mountains.

After our morning pool time that first day, we took a nap. I was able to sleep!

We knew where we wanted to eat that night, but the only reservation they had available was at 5:00 so we skipped lunch. We decided to walk along the Strip and see where the road took us. We walked by the new hotel, which is the hugest most ridiculously excessive thing I have ever seen in my life, but I guess it is Vegas, the City of Excess. This monstrosity is still in the process of being built, so the sidewalk to walk past it has been constructed into this awful tunnel. It was packed full of people, and so super hot and oppressive and long. Dan and I called it the Tunnel of Doom (TOD). I felt like we were being marched to a concentration camp. It seemed to last forever, and we were very happy to come out of it.

We rode the Manhattan Express rollercoaster at NYNY, placed a bet on a boxing match and headed back through the TOD to make it to dinner on time. We stopped at the Bellagio fountains to catch a show on our way. As we were waiting for the show to start, I said to Dan, "If 'our' song plays, it's a sign. A sign of what, I don't know, but a sign." There is a song that we (Dan especially) loves that is one of the songs played in synch with the fountain show. I knew our odds weren't good that it would actually come on next, but it DID! And we found out later what it was a sign of. Luck!

We ate at Olives, which is Bellagio fountain-side (we love the fountains). Eating there was an amazing experience. The drinks, the food, the view, and of course the company, it was all perfect. The drunk people next to us weren't perfect, but I suppose they were entertaining. I noticed that a lady in the group was taking a picture of the rest of the group. I asked her if she wanted me to take a picture of all of them. She said, "Oh sure! I can take a picture of you!" Obviously she didn't understand what I was offering, but I figured a photo of Dan and me would be nice. I started to hand her our camera when she proceeded to take a picture of us with her own camera. Someone in the group told her to grab our camera, so she snapped a picture of us as she wobbled back and forth.

This was the photo taken by Drunk Lady.

This was the view from our table.

This was man I ate dinner with.

I had scallops with risotto. Yum.

Dan had pork that was also yum.

The mojito was yum, too.

After dinner we headed back over to Ballys to do some more gambling. I had the luckiest, most fun gambling experience of my life that night. I sat at the roulette table (while Dan sat at the blackjack table) for four hours and kept hitting numbers left and right. There was a super fun bunch of people and a good vibe at the table and we were giving high fives and cheering and having a ton of fun. There was one guy, Luke, who kept putting a towering pile of chips on number 14 because October 14th is his son's birthday. And because he was so confident in the number, I started putting chips on 14, too. Guess what. 14 hit three times within five rolls! We were going nuts! Jumping up and down, yelling, it was fun!

I walked away with a lot more money than I walked in with, and so did Dan. He had a lot of fun at his table, too, with good vibes and good dealers and good luck. After this, we were tired, so we went to bed. The next morning we ordered room service and enjoyed a greasy breakfast in our room.

I wanted to repeat my morning bath, but time ran out. We had to get to the pool before the line was out of control. We headed downstairs even earlier than the previous day only to find an even longer line. I think that is when Dan and I simultaneously said, "We are never staying here again." Yes, we adore our pool time. After the pool, we took a long nap (still not enough, especially since I was up at 4:00 again that morning) and then walked around the Strip a bit. We got on the shuttle at Ballys that took us to the Rio, where we enjoyed the delicious seafood buffet. We always make it a point to go to this buffet right when it opens because it is very popular and it gets packed. The food was delicious, as it always is. We loved the little lobster tails the best this time.

After dinner we met up with Kathy, Isaac and Eli for a quick visit in the Caesars Palace lobby. That little Isaac, he just melts my heart. And yes, Kathy is just as sweet and cute in person. I love the Rollers!

Kathy wouldn't agree to let me take Isaac home with us.

We headed over to Ballys for some more gambling, and it was at this point that I decided to consume a huge can of Amp! (evil energy drink) in an attempt to wake up. Big big mistake. It did what it was made to do. It kept me awake all night long, as I laid in bed in the most disturbed, fitful non-sleep I have ever had. I got maybe two hours of sleep before getting up to get on an airplane. Never again! Next time I will let sleep come.

Kathy and Joe met us at Ballys for a bit that night, after the Amp! and before the fitful non-sleeping. Dan and I came out even for the night and we were just kind of done with gambling and we were tired, so we said goodbye to the Rollers and went to bed so I could non-sleep.

The trip home was sleepless (effects from Amp! still) and uneventful. Our reunion with Elijah was sweet. I missed him so much! And then he showed me just how much he missed me by vomiting all over me, twice. That is when The Sickness of the Year kicked in and we began a very long week, which is turning into a very long couple of weeks. Welcome home!

We came back with much more money than we thought we would, so that was nice. Then we remembered that we never checked to see if our boxer had won his fight. We looked online and he HAD! NYNY will be sending us $40 in the mail!

That was quite a detailed account of our trip, whew! Did anyone make it all the way through it?

(Still) sick in MN

Our weekend has consisted of a lot of this.

And this (nebs AND being stuck to Mommy).

Our little sicky still isn't feeling well. He is still fatigued constantly, he is coughing a lot and he has started grabbing his face, which makes me wonder about a sinus infection. We will likely be heading back to the doctor in the morning. His eyes are looking a little bit better. The eye ointment seems to be helping. The first three or four days Dan put the medicine in his eyes it was awful. He would freak out as if someone were trying to slice his head off. Yesterday and today I have had to put the medicine in myself since Dan has been gone, and...he LAUGHS! I'm not kidding!

It has been beautiful outside this weekend. We have stayed close to home, though, to try to help mend the sick boy. We did make it to the park a few times. Yesterday I decided I would set Elijah down on the tiny little rocks that line the ground of the park. At first he was hesitant to touch them but after a few minutes he was digging holes and pouring them over his head and putting them down his shirt and having a blast. I always feel bad about the exploring that he misses out on from not walking, so it was nice to see him experience something that he normally wouldn't. The other parents at the park were looking at us a little sideways as we sat on the ground together, both of us covered in rocks and giggling away. Our Rock Play came to an end when I noticed both of Elijah's ears were filled with rocks! I'm hoping I got them all out and that none of them crept inside.

Dan has been working at the dropzone all weekend. We miss having Daddy at home, especially on a weekend, but it is nice to have the extra money. We are anxiously anticipating his Sunday night arrival!

Elijah has been saying a ton of words every day. A lot of them sound like OCK, OP and NEE. I've figured out that OCK means: park, clock, rock, milk, truck, sock, book and Shrek. OP means: map, mop, cup, help and up. NEE means a lot of things. He points to many things and says this, and I just shake my head up and down and say, "Yes! Nee! Good job!"

I just have to make a few tweaks to my Vacation post, so it will be up tomorrow. Enjoy the remnants of the weekend and have a great week!

Friday, May 29, 2009

Unrelated tidbits

Not as much goo is spewing from Elijah's eyes and nose (yum! you're welcome!), but the coughing has gotten worse and he has practically no appetite. Overall he looks and acts like he is feeling a little bit better. Yesterday morning I came downstairs to go to work and Elijah was sitting on the living room floor looking up at me. One eye was completely matted shut (Dan was in the kitchen getting a warm wash cloth for it), but he didn't seem bothered in the least. One-eyed, he smiled his big beautiful grin and welcomed me with a HIIIIiii! That's my boy, smiling through it all.

Last night Dan met some friends out (it's been a long week of caring for a sick boy for him, so he mucho deserved it) while Elijah and I chilled at home alone. At 6:30, which is about 30-45 minutes before his usual bedtime, he started to look extremely tired. I asked him if he wanted to go to bed and he pointed upstairs and said GOGO! So GO upstairs we did, where he promptly fell asleep.


We had heard some mixed reviews about good old Dr. Nagib (E's neurosurgeon), so we weren't sure what to expect when we met him last week. We loved him! He is super intense, very quirky and it is evident that he is exceedingly good at what he does. He has been performing neurosurgery since I was born (21 years ago! Okay, maybe a little longer than that.). He has a very gentle nature, he was great with Elijah and he made it clear that he would have sat there for as long as it took to answer our questions. Once again we have evidence that Elijah is in very good hands. The best hands.


I forgot to mention that Monday of this week was Elijah's 2-year anniversary for Heart Surgery #1! Happy (belated) day, little one.


I am not exaggerating when I say what I'm about to say. MAYBE TWO TIMES in Elijah's life has he slept past 7:00 a.m. 99.98% of the time, he wakes up anywhere between the hours of 4:45 and 6:00. So. Last weekend at Grandma's house? Here were his three wake-up times: 7:20, 7:30 and 8:15. WHAT?! She put him to bed at the same time we do, his room at home is just as dark and quiet as hers. I can't figure it out! It makes me feel bad, like I don't have the perfect combination of factors in our own home that can get Elijah the best sleep possible.


I promise I'll post vacation pics this weekend! Sorry I'm a slacker. I've been catching up on sleep. Have I ever mentioned how much I love our bed?


June 18th, Elijah's upcoming surgery date, has triple significance. It falls just before Father's Day weekend, which is also the summer solstice. I just realized today that June 18, 2003, was my start date for my current job. Elijah's big dates always have other significance, but triple?? Personally I think it's assurance that this surgery is going to do amazing things for Elijah. I love that.


It has been a very long (yet short) week. I'm happy the weekend is here. Dan might work at the dropzone if the weather cooperates and Elijah and I have, um, let's see..oh yeah, NOTHING on our menu.

Wednesday, May 27, 2009

Our little sicky

Trying so hard to smile through the yuckies. (I look frightened/scared but really I'm just focused on Special Agent Oso.)

Not feeling so good, watching a little Boz before dinner (not that he'll likely be hungry).

That's an Easter-themed Kit-Kat in his hand. It's a security thing for him to always be holding onto something. Today the Kit-Kat was that thing.

Surgery date

Looks like Father's Day and the summer solstice are our holidays to spend in the hospital this time! Surgery has been rescheduled for June 18. Elijah will need to remain flat on his back for two days after surgery (which means he will be heavily sedated during that time), and mostly on his back (and still in the hospital) for another 3-5 days.

Elijah is feeling crummy. It's so sad. Goop is oozing out of his eyes, his tummy is upset, he grabs at his ears a lot and his cough sounds just awful. He smiles through it all, though. Our tough boy. The goopy medicine we have to put in his eyes three times a day is torture for him, and it is awful to see him so upset.

Dan will be spending the majority of the week caring for the little sicky, so keep his well-being in your prayers, too, along with Elijah's health. Thank you!!


Despite being ill, he is still progressing really well with his communication. Yesterday he started saying TRUCK (kuck) and STRAW (aw). Then he showed me one finger and said UH, two fingers and said OO and so on, all the way to five. I didn't even prompt him with this, he just started doing it. Go Elijah!

Tuesday, May 26, 2009

What a mess!

Wow, welcome home, Us!

We just got done with Elijah's pulmonology appointment, which was scheduled months ago as a croup/asthma follow-up. The timing of this appointment could not have been more perfect, with Elijah being so sick right now (and especially since Dr. K is also an intensivist, which makes him a very smart guy).

Elijah has a double ear infection, double pink eye, bronchitis and a touch of the flu or some bug that is making his tummy upset. He has never had pink eye or an ear infection before, so this is crazy!

Because of all of the medications he will be taking for the next three weeks to cure all of these ailments, we are going to need to reschedule the tethered cord surgery. That's kind of a bummer (especially since this morning we were given the opportunity to do it two days from now), but we have to remember that our timing is not always aligned with God's timing.

Elijah's BIG event days tend to fall on or very close to days with other significance, so I have kind of been feeling like June 4th wasn't HIS day for surgery anyway.

Since Elijah gets sick so often, Dr. K wants to run labs to check his immune system while he is sedated for surgery. He seems to think things will check out normal and that we are just "unlucky." That's us! Except, I don't like to use that word. I prefer to say that we are just given extra challenges. So far, extra challenges have been good for us, so I guess we'll keep taking them!

Monday, May 25, 2009

How to become Totally Exhausted Human Being (TEHB)

1. Leave for vacation an already sleep-deprived insomniac.

2. Wake up every morning at 4:00 while on vacation because that is when Elijah would be getting up (6:00 our time), and then remain unable to go back to sleep.

3. On the second day of vacation, after being tired of being tired, drink something called "Amp!" in an attempt to wake up because it has tons of caffeine and sugar and who knows what else in it.

4. A few hours after drinking the gigantic can of Amp!, lie awake in bed until 3:30 a.m. because the mystery contents are not allowing you to fall asleep.

5. Travel back home the next morning after only getting about 2.5 fitful hours of sleep.

6. Come home to very sick, coughing, vomiting, goopy-eyed, feverish, clingy little boy.

Ugh, we are indeed tired and sick here. Even so, Dan and I had an amazing vacation (and Elijah had a great time with Grandma and Grandpa)! I will update with a few highlights and pics later this week.


A quick update on our appointment with Elijah's neurosurgeon last Friday...

Surgery to release Elijah's tethered spinal cord is indeed in the works, and soon. Like, next Thursday. That date could possibly change due to a piece of equipment not being available at the hospital, but we will find out for sure tomorrow. The thing about this surgery that we were surprised to learn is that recovery time is much longer than we expected. Dr. N estimated that Elijah will be in the hospital for a week following surgery.

The surgeon was unable to tell us that this surgery would help Elijah with his walking. It is possible, but there's no way to know until we do it. If left untreated, a tethered cord can cause a few different serious issues, so we want to get the surgery done as soon as possible.


We have a previously scheduled appointment with Elijah's pulmonologist in the morning, which is perfect because it will be good to get him checked out since he is so sick right now. We're not sure what is going on with our little man right now, but he sure doesn't feel well. Please say a prayer for healing for him tonight! Thanks for checking in on him.

Thursday, May 21, 2009


I couldn't help myself last night. He looked sooo cute when I checked on him before I went to bed.

Last night as I was putting Elijah to bed he felt just a tiny bit warm to me. This morning he still felt warm so I took his temp and he was 99.5 degrees. Not bad, but he usually runs a really low temp, so his body was up to something. Dan stayed home with him and he seemed a little extra tired, but other than that and the slight temp, he was fine. Dan took him to the doctor just to make sure everything was ok since we are leaving town tomorrow, and everything looked fine. The doctor thinks Elijah either has a very very mild viral thing going on or that his body is reacting to his new molars coming in. I'm about to give him a dose of tylenol (temp is still just barely above normal) and put him to bed early. He looks so tired.

Please pray that this is just something little and that he has a healthy, fun, safe weekend at Grandma's house.

We will bring him to his surgical consultation in the morning and then Dan and I are off to the airport! Unfortunately I probably won't be able to write an update about the appointment until next week. Maybe I'll find a computer and update quick sometime this weekend. I don't know, I might be too obsessed with sitting by the pool.

I'm pretty sure Elijah understands that we are going to be gone for a few days. He is normally a snuggly boy, but I've never seen him THIS snuggly. He has been literally stuck to Dan or me all day/night. I have to say that I don't mind it at all! Of course, it could also be because he isn't feeling 100%, but usually even when he's sick he doesn't get to this degree of snuggliness.

Awwww, laying on Daddy.

Ok, gonna go get my share of loves quick before bed. Have a good holiday weekend, everyone! Please keep our man in your prayers. Thank you!

Wednesday, May 20, 2009

Wearisome worry-wart


I just spoke with a nurse from the neurosurgeon's office. Dr. Nagib wants to see Elijah soon. This Friday soon. I am taking Friday off work anyway since Dan and I are leaving for vacation that afternoon, so it works perfectly that Elijah's appointment is in the morning. Yes, I am a tiny bit freaked out about the surgeon wanting us in so quickly, but that just means the sooner we will know what is going on!

And, doesn't it suit Elijah that a big event (this appointment) would fall on another significant date (Leave For Vacation Day)? This always happens, and I believe it is one of the little things God does to remind me that everything is going to be ok.

Original post:

Elijah's newly acquired neurosurgeon has not had a chance to review the scans of his spine. I suppose he is a pretty important guy, so I'll cut him some slack. During this period of waiting for more information, I can't help but worry a bit. Have we caused damage to our little boy's body by taking 2+ years to figure out he has a tethered spinal cord? I know it's good that we are learning this now instead of later, but what if we had known about it a year and a half ago? Would Elijah be walking by now? I see the things he misses out on by not being able to walk and it breaks my heart to think that maybe we could have prevented this by catching the tethered cord earlier.

To add to my worries, Elijah has been refusing (screaming, crying, freaking out) to use his walker for the past week or so. I wonder if he is in pain? Discomfort? Being stubborn? Just not interested? Who knows.

I know what you're thinking because I'm thinking it, too. How silly of me to worry so much about this. Elijah will walk when the time is right. He is perfect. We couldn't love him any less than we do now. He is happy and healthy. God has taken, and is taking, very good care of him.

It has been a tired, tense past couple of days (weeks?) in our house. Nothing in particular has happened, we are just sleep-deprived (Dan and I have suddenly forgotten how to sleep, which is totally maddening) and we feel weary. That's why it is a very good thing that we leave for vacation on Friday! Elijah is going to stay with Grandma for a few days while Dan and I travel across the country to lay by a pool, soak up the hot sun, eat lots of yummy food and just spend some quality alone time together. I honestly cannot wait. It is always tough for me to be away from my little boy (wait until you see the flashcards I'm going to make that are going to help me with this!), but Dan and I need this right now. When we get home, we will be a much better couple and much better parents because of it.

On a positive note, Elijah is saying new words left and right. It is just awesome to see (hear) this. Last night I heard him say TEETH (teet), MAP (ap) and DONE (duh). I love it! Keep it up, my amazing little boy.

Oh, and Elijah is 27 months old today!

I hope you all are having a good week. Thank you for checking in..

p.s. Miraculously, Elijah's croup didn't turn into anything at all last week. Not even a cough!

Monday, May 18, 2009


A shirtless neb. Funny thing, the other day I saw a photo of a little boy about Elijah's age without a shirt on and I actually gasped when I saw that he didn't have scars on his chest. All we know is what is on Elijah, so it was strangely startling to see a scarless torso.

We are still waiting to hear from the neurosurgeon. I suppose it is a good sign that he isn't urgently calling us, but we are still very eager to know exactly what is going on with our munchkin's spine. If I don't hear anything tomorrow, I am supposed to call the neurologist so he can push things along.

We had a nice evening together. Elijah was full of energy and he was in a great mood. He explored every corner of our patio, which was really fun to watch. He picked up a rock and said, "OCK!" and then pointed at the baby gate and said, "DATE!" His speech is coming along really nicely.

That's all I've got. Just a quick update for now. Hopefully I will have an update from the neurosurgeon tomorrow.

Sunday, May 17, 2009

Two things I learned today

1. Elijah is terrified of hair dryers. I never "do" my hair. Unless I'm in a wedding, or unless there is an equally big event. It's one of those things that takes up too much precious time for me. Because of this, Elijah has never seen a hair dryer. Since I got my hair done yesterday, I figured I would try to style it for church this morning. The two of us were hanging out in the bathroom and I turned on the hair dryer. I'm pretty sure I would have seen the same reaction from him if someone were murdering me in front of his eyes. He was absolutely terrified. I turned it off and tried again a few more times, but always got the same horrified reaction, so I gave up. I guess I'm not meant to have stylish hair.

2. Elijah knows how to count! I heard him playing in his room this morning, counting his toys. He was saying, "uh, oo, ee, oh" (oo and ee are said with a closed mouth). I went into his room and asked him how old he was. He said, "Oo!" I asked him how many balls were in front of him. He said, "Oh!" I asked him to count to four. He said, "Uh, oo, ee, oh!" WHAT?! I was pleasantly surprised. My little smartypants.

Only our boy would be more interested in the gate itself than the many toys sitting behind him. He stared at the gate and touched it over and over, totally intrigued by it.

Eventually he made his way back to the toys.

Dan is still at the dropzone. He has been working all day. Elijah and I made it to the park, and we played outside for a bit. It is a beautiful Minnesota day. Right now he is munching on a peanut butter sandwich. When he's done we are going to finger paint and then take a bath and get ready for bed. Thanks for checking in! I hope you all had a wonderful weekend.

Saturday, May 16, 2009

My haircut.

It has been a long time since I have had a good haircut. Thank you, SARAH.


Coloring a picture for Grammie P and Gramps. It's on its way to you, you guys!! He just loves these new markers I bought for him. He cries and cries when we have to leave the table after coloring.

I feel like a fresh, new woman! I got my hair cut and colored today. It always feels so good after a good hair cut. And I can't complain about the scalp/neck/hand massages. Earlier today, we got a visit from an old friend, Roger. It was his first time meeting Elijah, so it was a really nice visit. We haven't seen him since before Dan's and my wedding. Thanks for visiting, Rog! Elijah loved you, and we enjoyed catching up with you.

Putting a bow on his lips. There's Rog in the background.

Tonight Dan headed over to urgent care for a softball leg injury (all is ok for now) while Elijah and I went to the grocery store. It was quite an experience for us. Elijah was THAT child in the grocery store. You know, the screaming, fish-flopping one. And I was THAT mother. You know, the totally embarrassed, helpless one. Oh ugh. I took the imitation crab meat from his hands to scan it and pay for it and that's when it all began. The screaming and body flopping lasted for a solid 15 minutes. I had every eye within 50 feet turn and give me The Look. As I did my best to ignore Elijah's ridiculous behavior (after telling him firmly that his behavior was not ok), I had the thought, "Wow. So THIS is what it feels like to be THAT mother. Huh. Interesting." The young man behind the cash register said, "Whoa, kid. You just aaaaaaaren't happy."

My beautiful boy's face. I could smooch that all day long (when he's not screaming like a maniac in the grocery store).

Something is going on with our little man. Teeth, maybe? We had thought all of his teeth were in, but I think we were wrong. He has been sucking, biting, chewing on his hands constantly, which is very unlike him.

He very quickly and randomly fell asleep on me while playing with his letters this morning. This is very unusual for him.

See the pretty flowers Dan and Elijah got me for Mother's Day? Maybe someday we'll have the means to own a nice camera to take fun pics of pretty flowers. In the meantime, this is what you get, and with a happy, handsome man in the background.

Friday, May 15, 2009

Elijah v. Croup, Round 6 (Elijah v. Viral Infection, Round 13)

If any sort of illness is floating around our house, it is sure to manifest itself in Elijah in the form of croup. That is exactly what happened again last night (thanks to my illness). Well, very early this morning. At 4:30 we did our usual go outside, do a neb, give oral steroids routine. How sad that it's becoming routine for us.

The good thing is that it was pretty mild in comparison to his previous croup episodes. Hopefully that means only a short visit with The Cough.

What a week!

Thursday, May 14, 2009

Tethered spinal cord

I spoke with Elijah's neurologist yesterday about his MRI results. The great news is that his brain looks perfect! I knew in my heart that there wouldn't be anything wrong with his smart, precious little head, so this news didn't come as a surprise. I was still relieved to hear it, though.

The other, not so desirable, news is that Elijah has a tethered spinal cord. We have always known that this could be a possibility because of his sacral dimple. The ultrasound that was done a few days after birth was normal, but obviously an MRI is a much more detailed test and it showed that it is indeed tethered.

What this means is that the end of Elijah's spinal cord is tightly fixed so there is not the normal movement on the lower end of it. There is something "binding" the spinal cord down, and therefore, it is "tethered." Dr. J claimed to not be enough of an expert to be giving me information on just how tethered Elijah's spinal cord is or where we go from here, so he is passing his scans onto a neurosurgeon. He did say that surgery to release the tether will likely be a reality for us. From the way it sounds, it's just as "easy" as that. Surgery would release the tether and the spinal cord wouldn't be constricted anymore.

Dr. J told me that it is a very good thing we are catching this now. Finding tethered cords later in life can be very bad, painful, stunting. So, thank God we went through with this test (especially since I was seriously thinking about not going through with it).

Now we just wait for the surgeon to call us and go from there. Maybe this news should have me really upset, but it doesn't. This could explain A LOT about our little boy. This could be the reason for the non-walking, and even some of his sensory issues. We are hopeful that this surgery will help Elijah out tremendously!

Dr. J told me that the neurosurgeon he is referring us to is the nation's BEST at fixing tethered cords. He claims this man can "work magic," and that he would trust him doing surgery on his own children. Again, we feel blessed to have so many amazing people caring for our little munchkin.

Which gets me thinking. How many people ARE caring for Elijah? We continue to add people to the list.

General pediatrician
ENT doc
Heart surgeon
Neuro surgeon
2 speech therapists
2 physical therapists
1 occupational therapist

p.s. Dan and I had a fabulous anniversary dinner last night. Thankfully my body held off getting sick till this morning! And thankfully I have leftovers!

At 3:00 this morning..

..I woke up with all-over body aches, a very sore throat and a headache. I poked Dan in the arm.

Me: I think I have the swine flu.

[Long pause.]

Dan: You don't have the swine flu. Go back to sleep.

Me: Ok.

I stayed home from work and slept until 11:00 a.m., ate some soup, and went back to sleep until now. My only prayer is that Elijah doesn't get whatever I have.

More on E's new diagnosis in a bit..

Wednesday, May 13, 2009

Three amazing, scary, fun, intense, adventure-filled, tiring, wonderful years.

My (bare-footed) husband, waiting for me to walk down the "aisle" (grass).

(Wearing shoes and) excited to get to him!

We took the chance of having an outdoor wedding and reception in May. In Minnesota. It was a cold (45-degree), rainy, windy day. We took it in stride, though. I refused to put anything on over my very pretty dress, and I didn't complain once! We danced to the music the band played and we enjoyed our time to its fullest. Many many friends and family members came to share our day with us. They were troopers, enduring the cold along with us. As Dan says, "'Twas cold outside, but warm in our hearts." :)

Lately I've been thinking a lot about our wedding day. I believe that God was giving us a glimpse of what our life together would be like. The conditions weren't ideal, there was some discomfort but we had a ton of support from loved ones and we persevered and remained happy and focused on the good things. Sounds familiar!

A lot has happened in three years. More than I ever could have imagined, as I shivered in my shoes on May 13, 2006. The pregnancy complications, the uncertainty surrounding Elijah's outcome, the premature delivery, the heart surgeries, the other surgeries, the hospitalizations, the panic attacks, the anxiety, the amazing way in which our loved ones, and most importantly GOD, carried us through all of that.. It hasn't been easy, but all of it put together has created some pretty cool things. Isn't it interesting what it takes for some people to "get it"? It has taken a lot for Dan and me (well, I speak for myself here). I'm thankful for the jostling, though, because I am very happy about where we are at right now, and I'll admit, I needed it.

I hope this doesn't come across as sounding insincere since it is such a cliche thing to say. I mean this very sincerely.. I could not have walked this incredible 3-year journey with anyone except my amazing husband. We are like two giant puzzle pieces who fit perfectly together. Any other puzzle piece wouldn't have worked. It had to be him and me. That's what God intended.

Happy Anniversary, Husband! Now, let's go to dinner!

p.s. Got Elijah's MRI results back already today. Good and bad news. His brain is perfect, his spine is not. I'll explain tomorrow.

Monday, May 11, 2009

God is present

We survived another day in the hospital. Elijah did amazingly well. He hadn't eaten since 6:00 last night, and by 1:00 this afternoon he hadn't complained once about that. We really do have a good little boy. We are so proud of him.

As we waited for anesthesia to come talk to us about what would be happening, I started to feel some serious anxiety. I kept wondering if this was the right thing to do. There is likely nothing "wrong" with Elijah's brain or spine, so is it right to put him through trauma yet again? I said to Dan, "Are we doing the right thing here?" He said yes, but I was still unsure. And then! One of those God Moments happened. We know this anesthesiologist at Children's who we absolutely totally completely love and adore. He took care of Elijah during his last open heart surgery, his hypospadias repair and I think maybe a heart cath or two. This doctor is the definition of wonderful. Really, he has everything you could ever ask for in a doctor, especially a doctor who is going to be by your son's side every second he is in surgery, or in today's case, getting tests done.

So, back to the God Moment. At the height of my anxiety, Dr. Altman entered the room and I couldn't believe it. OH THANK YOU GOD OH THANK YOU THANK YOU. He sat down and talked to us and within minutes I knew this was good, it was the right thing, and everything was going to be ok. Dan mentioned to him that E's neurologist wanted bloodwork taken while he was sedated and Dr. A said that it was not on the paperwork anywhere. So this amazing man called our neurologist and asked him to send in the orders so we could get this done. Some new guidelines had been implemented two days ago that requires ONLY doctors to be able to write in orders for tests, so we needed the neurologist to be available promptly. He was, but there were some problems with getting the orders into the system, so Dr. A took it upon himself to write the orders out himself, as if he were the one requesting them, so we could get this done. This is not something most doctors would be willing to do, and he even told us that. We were so thankful for his willingness to go around the system a bit. He said to us, "There is no way I am going to make a two-year-old come back to the hospital, fully awake, to go through the trauma of getting bloodwork taken when we can take care of it while he is sedated." THANK YOU DR. A! Oh man, we sure were thankful to have him as a part of our life today.

The MRI went well. It took about two hours. Elijah woke from the anesthesia just fine. We met him in the hallway (being held by a nurse, he wasn't just roaming the hallway alone) after the procedure and he was happy to see us. After his heart caths he is always grumpy, so it was nice to see a smile when we walked around the corner. We had to sit in the short stay unit for about a half hour and then we were sent home. Elijah was starving. Within about an hour and a half after leaving the hospital, he had: three boxes of apple juice, a huge ziploc bag filled with chocolate teddy grahams, a stick of string cheese, a huge slice of pizza, a cup of milk and about a zillion mandarin oranges. I guess he made up for what he missed today!

Elijah went to sleep well and was in good spirits this evening. The sedation has made him just a tiny bit hoarse, but otherwise all is well! We hope to get the results of the MRI in the next couple weeks. He was clearly upset whenever nurses were near him, but otherwise, he did really well today. We have such a strong, amazing little man.

We had a little detour on our way home from the hospital. As we were walking through the skyway out of the hospital, Dan and I were practically skipping. I think I said, "Wow! That was the easiest discharge we've ever experienced. This day is AWESOME!" We got into the car and started to drive away, when....thunk thunk thunk.. Uhhhh, is something wrong with the car? I got out to look at the tires and sure enough, the right front tire was totally flat. Oh ugh.

We have these stupid hubcaps on our car (they came with the tires) that make it so you cannot access the lug nuts (forgive me if I get this terminology wrong) with a normal tire iron. So dumb. So Dan and I just stared at each other like, what in the world are we going to do??? He looked in the trunk, in which I believe God had placed a bottle of Fix-a-flat. Dan pumped it into the tire and we quickly drove away, in hopes of finding tire help before it deflated again. Children's Hospital is in a very sketchy part of town, so I was biting my fingers as we drove. Please God, please God, don't strand us in this part of town. We thankfully came upon a tire shop, and we were totally blessed to meet an amazingly nice man who put on our spare tire almost immediately, and for FREE. I think we will go back there and bring him cookies and any other treat he might like.

I loved how we handled it all, though. I was proud of us. We could have freaked out and handled that situation poorly, but we kept humor in it and handled it lightly and I believe that was a good example for Elijah to witness. It was a good day. Everything went as well as it possibly could have and we are so thankful for that. God was with us today and it was so obvious. It's amazing what you see when you keep your heart and eyes open!

Thanks for checking in. Pray for good MRI results for our brave little boy. We already know he is just perfect.

Sunday, May 10, 2009

Happy Mother's Day!

Wearing the neb mask like a big boy and sporting his cute new shirt from our friend Cecilia. I just love the color, and of course, Elijah is the king of long sleeved t-shirts and loungewear.

Happy Mother's Day to all you wonderful mamas out there! I hope you have all had special days.

My boys have made today special for me. I woke up to a yummy breakfast waiting for me. It was supposed to be breakfast in bed, but I came downstairs too soon. Oops. Then all of the husbands (Dan's brothers-in-law and himself) made lunch for the ladies. It turned out great! They made a huge feast and we were impressed with what they pulled together. They even did the dishes, yay!

Stop me before I eat him up.

I got another treat this weekend, too. One of my very best friends in the whole world, Heather, drove up from Iowa with her two cuties for the weekend. Heather and I were roommates in college for four years and I just love and miss her to pieces. It is always so nice to catch up, and seeing her two kids was icing on the cake! We went to the Mall of America on Saturday for a while. Well, Elijah and I were only there for a while because of naptime, but Heather & kids were troopers and they stayed for the entire day. Elijah and I watched Molly and Ben (her kids) go on a few rides and we all had lunch at the Rainforest Cafe.

Elijah showed a genuine interest in Molly and Ben, which is pretty unusual for him. It was so nice to see him approach them both, wanting to play, and not being afraid to physically touch them. I loved seeing it! Thank you soo much for driving up for a visit, you guys! It was awesome seeing all of you.

I tried giving Elijah a mix of foods/snacks to see if he would sample all, or at least most, of them. He didn't. I'll keep trying, though. His eating is getting pickier and pickier, and I want to continue offering him a variety of things.

I forgot to mention that Dan let me take a long nap this morning. Actually, it was just an hour and a half lying in bed since I couldn't sleep (which is totally ridiculous, as tired as I always am). It was nice, though. Tonight I'll get a nice long bath and then we'll watch my requested movie, Harry Potter (5th one), since I just finished that book this weekend.

Getting some work done.

Check out this cool book that Elijah's ECSE therapists made for him. I had put a bunch of photos together for them to laminate and put together into a book, in hopes of getting Elijah to point to the things he wants and to communicate better. There is an activities section, a food section, a people section, an objects section and a tv shows section. Since getting this book, we have learned what the two most important things are to him. Special Agent Oso (tv show) and cheese. He holds one of these photos in each hand and he carries them around with him literally wherever he goes.

Mr. Potato Head does not need to smell.

My tummy keeps turning periodically as I think about tomorrow's MRI. Ugh. It will be good to be on the other side of it. Please keep Elijah in your prayers tonight. Pray for as little distress as is possible. Thank you! And thanks for checking in.