A weekend full of Kickus joy

I have been extremely organized, productive and timely this Christmas season (it's the pregnancy). It has felt wonderful to be finished with the stressful parts of the holidays so I can actually truly enjoy the fun and meaningful parts. And it's not even Christmas yet!

We spent a lot of time with family and friends this past weekend and it was wonderful! This photo of Auntie Lynn ("Auntie Inn") and Elijah is my favorite from the weekend. My 10-year-old niece, Emma, shot this! I could munch on that deliciously chubby Elijah neck like it was a cinnamon roll.



Do I have a beautiful family, or what? Here are Auntie Lissa ("Auntie Issa") and cousin Kaleigh, ("Kayyee") snuggling.



And cousin Emma, the budding photographer.



I only have a two-day work week this week, woohoooo! We plan to spend Christmas Eve with Dan's family and the rest of the weekend is set aside for some quality Mama-Daddy-Elijah time.



Elijah is still coughing occasionally. Overall he is sleeping well, so we haven't let it stress us out too much. He got his H1N1 booster last week, so it felt good to check that off the list.



Have a great Kickus week, everyone! Thanks for checking in! (I will probably never pronounce "Christmas" correctly again. "Kickus" is just too cute!)

Quick week!

Elijah got his H1N1 vaccination on Tuesday! YAY!

He is almost completely back to his usual spunky self after having a heart cath on Monday. Tuesday and Wednesday were sluggish, still-puffy and fluid-eliminating days for him. He woke up both of those mornings with saturated pajamas and bedding. I felt like a horrible mom, but he did not complain once through the night and this has never happened before. We checked him a few times throughout the night last night and he was dry this morning, thankfully. I guess his body had some extra fluid to eliminate for a couple days!

We are heading to our "It takes two to talk" class tonight. Elijah gets to hang out in a room full of toys and kids while Dan and I will be next door learning about ways to effectively communicate with him. Every time we leave at the end of the night, Elijah yells, "BYE FENZ!" about 97 times. He's saying goodbye to his friends! :)

Remember my story about Bobby the Bird from Jungle Junction/physical therapy? Well Elijah's awesome therapists ran across a miniature Bobby the Bird beanie bag and they gave it to him yesterday to take home with him. He was SO EXCITED. He looked at it and said, "BABY BOBBY!?" and then looked down at the big version of Bobby (who still comes with him wherever he goes when he's at therapy) and said, "DADDY BOBBY!" Baby Bobby slept with him last night and this morning when I got Elijah out of bed he gave me a concerned look and said, "Daddy Bobby." I wonder if Baby Bobby is missing his daddy?

I almost don't even believe what I'm about to say because it seems like it just cannot be true, but we get Dan ALL WEEKEND! It has been a long summer/fall of him working most weekends, so I plan to cherish my weekend time with him for these next few months.

That's all for now! Thank you a ton, all of you who sent up prayers for our little boy earlier this week.

Dreams

Do you like Elijah's unintentional Zac Efron hair 'do?

Around 3:00 this morning, Elijah woke up screaming bloody murder. It was one of those alarming screams that would send any parent flying out of bed in about a half a second. When I got to him, he was on his hands and knees in his crib and he was trembling. He stopped screaming once I picked him up, but continued to shake and whimper for a bit as I rocked him back to sleep. Obviously he was having some sort of nightmare or night terror. It makes me so sad to think that bad thoughts are already running through his little two-year-old brain. I keep wondering what he could have been dreaming about. Was Larry the Cucumber attacking him with a hairbrush? Was a doctor chasing him with an enormous needle?

At least I got to rock him back to sleep, which is something I haven't done in a while. He's getting so big that it's hard to get us both situated comfortably in the rocking chair. Elijah, stop growing up!!

I guess the bad dreams shouldn't surprise me since Dan and I are both crazy vivid dreamers. I can still remember some bad dreams I had as a very little girl in vivid detail. It looks like Elijah is following in my footsteps.


This has been happening in our house a lot lately. Elijah loves playing his "'tar" while singing to his animal friends (who are very good listeners).


Chattin' on the phone while checking some things out on the computer.

p.s. H1N1 vaccinations STILL not available. PATIENCEPATIENCEPATIENCEPATIENCE.

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.

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!

H1N1

I just found out that my 10-year-old niece, Emma, has been diagnosed with the H1N1 virus. It sounds like she is on the road to recovery and doing fine. Get better quickly, Emma! We love you!

Now, I know that this whole swine flu thing has involved a lot of hype and freak-out tactics from the media, but I am worried. Thousands and thousands of people die from the "regular" flu every year, but do you know who that typically involves? Children (and elderly people) who do not get a flu shot and who have underlying medical conditions. As we wait for the H1N1 vaccination to be released, Elijah fits into that very description.

This stupid swine flu is a huge black cloud hanging over my life right now. Dan and I have always strongly believed that keeping Elijah in a bubble is not the way we want to live. We have always been careful with hand washing and hygiene, but we typically don't avoid public places out of a fear of germs.

I just don't know if I should be as scared as I am about all of this. I have no idea how Elijah's body, already working extra hard and already so susceptible to illness, would handle this virus if he were to catch it.

We heard yesterday that the H1N1 vaccinations won't be ready for distribution until the end of November. Now that the virus is much more widespread and now that flu season is basically here, should we keep Elijah out of daycare until then? Should we avoid church? Should I cancel our trip we plan to be taking on an airplane in a few weeks? Should we keep from bringing him to the grocery store? Or do we go on living our lives like we always have and pray that everything will be ok? These are questions I ask myself about every 30 seconds.