Some disjointed thoughts on lessons and perspectives

Please don't call CPS on me! Would it help if I told you this photo was taken while the dads were in charge of the babies? :) Thanks Missy (well, Dennis, really), for the photo.



Elijah is still doing well on Tamiflu. He has a few more days of it and then he will be done. The H1N1 vaccinations are still not in. I am trying to be patient! I think PATIENCE is one of the Life Challenges written next to Megan Porta in my file that sits in a filing cabinet somewhere in God's office. I feel like I am constantly having my patience tested, which I guess I can't complain about. It is rewarding to know that I am in the process of learning the things I am supposed to learn.

Last Saturday was the three-year anniversary of the day we learned there was something wrong with Elijah's heart. I will NEVER NEVER NEVER forget that day. As I was thinking about it, I realized how much my perspective has changed since then. Three years later, after persevering through some pretty intense challenges, I feel that I am able to handle difficult situations much differently. I guess that is a part of maturing and experiencing life and experiencing the challenges God intends for me to face.

Despite some mildly worrisome things that have been going on for us lately, I feel more blessed than ever. Our experiences with Elijah have completely changed my views on what matters and what is worth worrying about. Three years ago I might have let certain things bring me down, but now? All I see are the amazing blessings I have in my life.

Dan and I recently made a goal to read through the entire New Testament before Christmas. I had a few days off work last week, so I read through the book of Matthew. There were a few things that really stood out to me:

1. Jesus' life on earth was pretty amazing and his passion for his Father was incredible! It really makes me think twice about how I treat people and about my relationship with God.

2. I love love love reading through the parables. I think my favorite is the one in Matthew 13 about the sower and the seed. It is such a good reminder for me about how I should be living my life. If you haven't read it in a while (or ever), go read it!

3. This is one of my new favorite verses and every time I start to worry about something, I say it in my head and suddenly I feel free and light and good. Matthew 6:34 - "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

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Some of you asked about what will be done at Elijah's heart cath on 11/9 and also at his next OHS. I think this post answers both questions.

I will try to get video of Elijah taking steps soon. Usually when I get the video camera out lately all he wants to do is come over and steal it from me, so I'll see if I can trick him.

Tuesday tidbits

Elijah is still taking Tamiflu and so far he hasn't had any side effects. He also hasn't had any flu symptoms. Now if the state of MN would just get some vaccinations in stock!

We have some exciting news! Elijah took FOUR STEPS ALL ON HIS OWN this week! Every night before bed Dan and I let him practice walking back and forth between the two of us. He can usually get one or two good steps before we have to catch him, but the other night he took four solid steps without any help. I have NEVER said this before because it really has never been true until now.. He is so close to walking! Maybe by the time he turns three?

Elijah's heart cath is two weeks from yesterday. It makes me a little bit crazy to think about it, but at the same time I am excited to know what is going on inside of his body. It will also feel good to have a better estimate for open heart surgery #3. Somehow I always feel better when I have an idea about when major events will take place.

Sorry for the lack of pics lately. I will do better! Have a good week, everyone.

Off week

Sorry for the lack of updates this week. It started out a normal week and ended up a very not normal week. One of the not normal things is that Elijah is now taking Tamiflu. A little girl who Elijah plays with a lot at daycare has the H1N1 virus. He was in close proximity with her all week. Ugh. So far he is showing no symptoms, but that doesn't mean that it's not brewing in his body. I am crazily freaked out about this. Not only does Elijah have a complicated heart condition, he also has only one kidney and childhood asthma. Please God, protect our boy!

There is a little bit of other drama going on, but all of that is still unfolding. Aside from all of this, Elijah is doing really well. His speech continues to blossom and he makes new strides every day. Last week he started climbing up onto the couch all by himself!

That's all for now. I just wanted to let everyone know we are still alive! We would appreciate any prayers of protection you are willing to send Elijah's way.

Cammy

We have been saving up for a new camera for a while and finally got to the point where we could make it work. I am so in love with Cammy (as I affectionately call her)! I'm just starting to get to know her, and so far she is a very fun friend.

I love this face that Elijah makes sometimes.

Iowa weekend

We had a wonderful weekend in Iowa with my college roomies (minus one) and some of their families. The three of us came home very tired, but I think that is a sure sign of a good time.



We spent a lot of time at my friend Katie's, and Elijah loved exploring her house. He had fun checking out the pumpkins, calling out repeatedly for Bob the Cat ("Bob! Bobby! Cat!") and closing himself in their fireplace (don't worry, it was off and he was safe).



Katie and her husband, Drew, made us a ridiculously delicious and elaborate feast, as they do every year. I can still taste the juicy flavor of the smoked chicken. Mmmmmmmm.



Missy and her family drove up from southern Iowa and it was fun getting to know her kids better. We even got to splash around with them at the Kings Pointe waterpark!



We have a fairly normal week ahead of us. Oh, aside from the fact that a child at the daycare Elijah goes to caught the H1N1 virus. Dan canceled some work to keep Elijah out of d/c as a precaution, so we will see how the last part of the week plays out.



Here is the wonderful hostess of the weekend, the beautiful Katie!

Caramel Apple Pie (from allrecipes.com)

Ingredients

1 refrigerated pastry for a 9 inch double crust deep dish pie
1/2 cup packed brown sugar
1/4 cup butter, melted
1/3 cup all-purpose flour
5 cups thinly sliced apples
2/3 cup white sugar
3 tablespoons all-purpose flour
2 teaspoons ground cinnamon
1 teaspoon lemon juice
20 caramels, halved
2 tablespoons milk


Directions

1. Preheat oven to 375 degrees F (190 degrees C).

2. To make taffy mixture: In a small bowl combine brown sugar, melted butter, and 1/3 cup flour. Mix well and set aside.

3. To make apple filling: Place apples in a large bowl. Add white sugar, 3 tablespoons flour, cinnamon, and lemon juice. Toss until all ingredients are mixed well and apples are thoroughly coated.

4. Spoon half of apple filling into pastry-lined 9-inch pie pan. Top with half of caramels and half of taffy mixture. Repeat process with remaining apple filling, caramels and taffy mixture. Place top pastry over filling and seal well (this is very important-if edges are not sealed, caramel will leak out all over). Cut steam vents and brush top crust with milk or light cream.

5. Cover pie with foil and place on a baking sheet. Bake in preheated oven for 25 minutes. Remove foil from pie and bake for another 20 to 25 minutes, until crust is golden. Serve warm.

Midweek stuff

Our week is zooming by, just in time for another fun, busy weekend! On Friday the three of us will make our annual drive down to Iowa to hang out with my college friends. I can't wait! We will be staying at the beautiful lakeside Kings Pointe Resort, where my good friend Katie works. I'm hoping Elijah will enjoy the waterpark this year. Last year he wasn't a huge fan.

Dan and I carved pumpkins earlier this week. Can you tell which is his and which is mine? Elijah was not interested in the gut-emptying or carving process AT ALL. Once we had all the messy, hard work out of the way he fell in love with his "punk-ins."



Elijah's cath date has been set for November 9th. There are only TWO dates for the remainder of 2009 when both Dr. G and Dr. B will be available. Dr. G specializes in catheterizations, which is lucky for us since we love and trust him so much and also because Elijah is a cath lab frequenter. But Dr. B specializes in not only caths but specifically in stent placement/tweaking. Since Elijah has a stent in his right pulmonary artery that will likely need some adjusting, Dr. G wants to make sure Dr. B is around the halls of Children's Hospital on the day of Elijah's cath.



Tomorrow, October 15th, marks the one and a half year anniversary of Elijah's most recent open heart surgery. I can hardly believe that much time has passed. That surgery did amazing things for our little boy. The time before April 15, 2008, was uncertain and devoid of energy and at times very scary. The time after April 15, 2008, has been filled with energy and pink lips and 100% O2 sats and developmental progress. It feels amazing to have put so much time between then and now. Now to gear up for the next one, right?

I will post the yummy Caramel Apple Pie recipe before we leave for the weekend. We have two pieces left! Anyone want to come over tonight?

Pumpkins and apples

On Friday night the three of us went to a nearby apple orchard/pumpkin patch. The weather was perfectly crisp and Fall-like (good thing we soaked it in since there was snow on the ground this morning).



Elijah loved the pumpkins (punt-ins) and the bumpy hayride and of course all of the apple picking and eating.



Dan worked on Saturday while Elijah and I went to my cousin's little girl's first birthday party. It was so nice to see family! (No pics from that, bummer.)



I feel like I was walking around like a Zombie all weekend. Elijah and I are still not caught up on sleep from our travels last week. Maybe another week of super early bedtimes will do the trick? Man, I am old!



On Sunday Elijah and I took much-needed naps and I made my very first (caramel) apple pie. I must say, it is pretty darn good. Half of it is gone already. Later this week will be apple crisp and pumpkin carving.

Cardiology visit

We just got back from Elijah's cardiology check-up. It had been six months since he had seen Dr. Gremmels. That's a record!

Elijah was a very brave boy. He was scared, but a little bit less scared than he normally is. We usually are not able to distract him at all (through all the tears), but this time distraction worked. He became preoccupied with a model of a human heart. For some reason he thought it was a coo-coo clock, so he kept opening and closing the "door" to the right ventricle and saying "poo-poo clock!" He also sat all by himself for the 20-minute echo for the first time ever and didn't fuss once!

He weighed 28 lb. 6 oz., he was 34 inches tall (growth, yay!), his oxygen saturations were at 100% and his blood pressure was 105/86.

His heart function is great and his valve is leaking slightly more than it was at the echo six months ago (which was then classified as "mild"). It's hard to see what is going on with his distal arteries through the ultrasound because the arteries are so small, so we'll have to wait till the next heart cath on that.

Dr. Gremmels (who Elijah calls "Doctor Guess") wants Elijah to come in for a heart cath in the next two months. From there we will have a better idea about how well his arteries are (or aren't) growing, and we will have a better idea about when his next open heart surgery will be.

It sounds like surgery could be anywhere between six months and two years from now. The two main things that will determine the timing of it are: 1. how quickly he outgrows that pulmonary valve, and 2. what the cath reveals about the bloodflow in his arteries (mainly the right pulmonary artery).

Dr. G said YES about getting the H1N1 vaccination. Apparently the majority of the children in the ICU who are sick with H1N1 right now are non-cardiac kids. Typically, families that have children with no underlying medical conditions are not being as cautious, so BE CAUTIOUS.

I know the media has blown H1N1 into distorted proportions, but it is just as serious as the seasonal flu and many children die from that every year. ALL children under the age of 5 are at high risk for serious complications from H1N1, so talk to your pediatrician and make the decision that is right for your family. And do lots and lots of hand washing!

The rest of our CA trip

We made it to the San Diego Zoo while we were in California, and it is such a beautiful place! The very steep ups and downs gave us a nice workout, and the animals were fun to watch. Elijah's favorites were the elephants and the giraffes.



My mom (who is an extremely talented artist) made and framed a colored pencil drawing of a giraffe that is hanging on the wall of the bedroom Elijah and I slept in while we were visiting. Every morning at 4:00, the first words out of his mouth were, "Hi Faffe! Chomp chomp! Fee!" Translated: "Hi Giraffe! Chomp chomp! Tree!" Because of this, his love for the giraffes at the zoo didn't surprise me much. His intense love for elephants was a little bit unexpected.



At the end of our Zoo journey, my mom bought Elijah a stuffed Mama and Baby Elephant. Also, a stuffed Mama and Baby Giraffe. I really had no idea how hard he would fall for these. He has a million stuffed animals at home and has never given them the time of day. (Look how exhausted he looks here.)



The morning after we went to the zoo, the 4:00 Elijah Talking turned into this: "Hi Faffe! Chomp chomp! Fee! Hi Mama Eh-phunt! Arrrrrrr!" Repeat thirty times. He is still, five days later, loving on these stuffed animals big time.



We also spent an afternoon at Seaport Village, down by the ocean, but my camera batteries died so I don't have photos to share from that adventure (therefore still sharing zoo pics). Elijah got to ride on a huge carousel, which happened to completely frighten him for a while before I could convince him to please let go of my neck before he choked me since he was going up and down on a horsey that he was very tightly strapped to.



Then we saw someone standing along the boardwalk randomly dressed up in a Mickey Mouse costume. I had no idea Elijah would be so star struck! He said, "Ickey!" enough times that we went over and said hi to the mouse and we even gave him a high five. While walking back to the car, and for the next fifteen minutes in the car, he said, "BYE ICKEY!" a total of 1,452 times.



We also visited Coronado Island for a bit (camera still dead), which is a very cool little place. San Diego is a BEAUTIFUL city.

Back at my mom's place, we did a lot of relaxing and hanging out and EATING and gazing at the pretty fountain in the parking lot. My mom is in the process of moving, so Elijah became good friends with one of the empty boxes that she hadn't filled up yet. There's that security thing again! Once we put him in the box it was pretty hard to get him back out. Oh, and do you see that little yellow mirror on the floor right behind him? My mom uses it to put on her make-up. Well Elijah seemed to think it was a microphone, so he liked to hold it up to his mouth and sing pretty songs for us. I have no idea where he gets this stuff!



Our vacation went really quickly and before we knew it we were packing up to come back home. I'm hoping we can get out to visit again soon (and this time bring Dan).



The stars didn't align for us on Tuesday morning as we prepared to fly back home. Our flight was delayed two hours because a runway was closed down for construction at the Minneapolis airport.

Then I went to the agent at our gate to get our seats changed since Elijah and I were assigned seats in different rows. The young man with the sparkling personality told me he couldn't help me. I happened to know this was crap, so I asked him again and showed him my 2-year-old little boy. He repeated the same line and this time added, "You can figure it all out once you get on the plane." I was so tired at this point from getting up so stinkin' early every morning that I lost it. I started crying and had to walk away for a bit.

Once on the plane, the flight attendants were appalled that I hadn't been helped at the gate. We then started the most complicated and embarrassing Airplane Shuffle I have ever seen, with a hesitant couple moving here and one guy moving there and another gal moving up there and another couple squeezing in over there. Thank you, Unhelpful Ticket Agent! My wonderful hubby, who is known for sticking up for the people he loves, called the airline the next day and made sure somebody heard what had happened.



Like I said in my last post, Elijah did AMAZINGLY well on both airplane rides. He sat like such a big boy in his seat with his seat belt fastened the ENTIRE FOUR HOURS. I had a handful of people per flight tell me they were amazed at how well-behaved my little boy was. Good job, Elijah!

This weekend is shaping up to be an unexpectedly busy weekend for Elijah and me, and Dan will hopefully be working a bit (while freezing his bum off). I hope everyone has a nice, safe weekend!

Back from sunny California

Although we were pretty sleep-deprived when we landed in cold, rainy Minneapolis yesterday (our early bird woke up at 4:00 every single morning while we were on vacation), Elijah and I had a great time visiting my mom in San Diego. Elijah was a total angel on the airplane, both ways. He was more well-behaved than I ever could have imagined he would be. I was the one who had a tearful meltdown in the SAN airport yesterday morning after a ticket agent refused to seat Elijah and me next to each other (we did end up sitting next to each other, but it was a crazy ordeal).

Going to the beach was one of the highlights of our trip. I will never, as long as I live, forget the look on my little boy's face as we turned the corner to see the ocean spread out before us. The awe and excitement and sheer joy on his face made little happy tears roll out of my eyes.

At first he stood like a flamingo with only one foot in the sand, not knowing what to think of the texture and wetness.



After a minute or two, he was a man in love! He squealed and giggled like crazy every time a wave crashed into him.



He kept trying to trick us into taking him further into the ocean. He would say, "Walk!" and start out walking (with us holding onto his hands) along the beach, and then he would gradually start to veer straight toward the ocean. We had a hard time getting him to move even one inch back toward the shore.



I tried to soak it all in. Elijah isn't the only one who loves sun, sand and the beautiful ocean.



We found a few cool rocks and seashells to look at.



We let him get his fill of the beach. I think we have a future surfer on our hands. Maybe we should reconsider our current place of residence?



It was a gorgeous day, the scenery was beautiful and it is a memory I will have with me forever.



There is nothing better than seeing this smiling, happy, beautiful face.



More fun vacation photos to come...

Modeling career, an appointment and upcoming travels

Our little stud-man is a model! (Scroll about halfway down the page.) Capable Kids is where we take Elijah for outside physical and speech therapies. His therapists love him to pieces and they thought it would be great to share his sparkling little personality with the internet.

Elijah had a follow-up appointment with neurosurgery today (remember The Voice?) and everything still looks great, three months after the release of his tethered cord.

I'm not sure if I will have the desire to sit at a computer in the next few days since Elijah and I will be busy soaking up the California sunshine and all, so we'll see you back here next week! Please pray for a peaceful four-hour plane ride or two. How easy will it be to keep my curious two-year-old confined to an airplane seat for that long? What are the chances that he will sleep later than 3:00 a.m. while we are there (since he has been waking up consistently at 5:00 a.m. in our time zone)? What will his favorite animal be at the San Diego Zoo? Will the ocean be warm enough for us to dip our toes in? Will Dan miss us while we are away? These are all things that I will have answers to on Tuesday!