A bit of tachycardia and some funnies

The sickness has lived on for the two adults in our house. Just when I think I'm feeling better, I have a terrible day. Today was better. Dan feels like this weekend will be our turnaround and I sure hope he's right. The boys have been great! Sammy healed quickly from his flu and praise GOD it never touched Elijah. It's a miracle!

We have had a few other concerns with Elijah lately. He has been falling asleep at school on occasion, which is something that has just never happened in the past. Then on Sunday he laid down on the couch and said, "I'm REALLY tired and need a nap." I was kind of anticipating the flu, so figured it was finally hitting him. But then he never got a fever or had any other symptoms, so I was back to scratching my head about the request for a nap. I called Dr. G right away Monday morning and he wanted to move Elijah's standard 6-month cardio visit up by a month based on what I'd told him. We will go in for a check-up on 3/14. We had his well visit with Dr. Judy scheduled for today, which was timely.

In addition to the naps, E has also experienced some headaches (maybe 2/week) and random body pains recently. Dr. Judy felt like the pains and headaches were side effects from taking Strattera, which is what my gut had been telling me. The naps and exhaustion, though, could be a concern. When she checked his heart rate in the office it was 130bpm at rest. She checked it a few different times and it didn't change. She was mildly concerned by the tachycardia and told us to keep an eye on it. If it gets above 130bpm before 3/14, we should bring him back in. His blood pressure was high today, too, but that has slowly been increasing over the past few months. My gut tells me that some sort of heart intervention will need to happen soon (maybe a cath) due to increased pressures. We will find out on 3/14!

Other than these concerns, Dr. Judy is super happy with Elijah's growth and progress! He's in the 4th percentile for height and the 51st percentile for weight. Considering everything, our oldest boy is doing GREAT!

Speaking of great, Elijah has had a few really great days at school this week. Today I got a few reports that used the words "super" and "fantastic." Wow! He has been buckling down and doing work at school that he previously was fighting and refusing. 

I'll end with a few funnies..

When I was super sick last week, Dan was helping me change clothes when I literally could barely move on my own. Sammy happened to walk by and yelled into the room, "Take care of your WIFE.....Dad." :)

While we were waiting for Elijah to get done snowboarding last Saturday, Sammy grabbed some supplies from the cafe. He had a few spoons and packets of salt that he was playing games with and I didn't think much of it. On our drive home Sammy said, "Mom, I'd like a peanut butter and jelly sandwich for lunch, please.......And you won't need to get out the jelly. Because I've got these.." as he passed me the jelly packets that he had stolen from Afton Alps. :)

I've been trying to consistently make time to be at school with the boys on Wednesday mornings. I go into Elijah's class first and then Sammy's. I LOVE spending time at school with my cuties. It is such a special time for me. I help their teachers out with whatever they need and I give lots of hugs to my boys in between tasks. I have loved getting to know their classmates a bit, especially Sammy's friends who I've been able to spend more time with. Mrs. H has had me take a few students out in the hall and play a numbers game so they can become more familiar with writing, recognizing and saying numbers. This week for the first time Sammy questioned why I never pulled him out for the numbers game. I told him it was because we could do our own game at home, so I have started writing some challenging numbers on paper for him to read back to me. This boy! He is so dang smart! I have been testing him with numbers in the millions such as 7,002,004 and he can read them back to me accurately. So impressive!

And tonight Sammy used the word "approaching" correctly in a sentence. While in the bath, he said, "Mom, look! The minion is approaching a waterfall!" I can brag about having smart boys, right?! :)

Tomorrow we will attend Sammy's kindergarten musical performance which involves him being a bumble bee. We can't wait to watch! Sammy warned me that he probably won't be singing in front of anyone because he "hates performances." :)

Thanks for checking in! More later!

A colorful week

I can't believe a week has passed since my last post! Where in the world did that time go? We have done a lot in the past week! 

We colored Easter eggs, which is an activity the boys look forward to every spring.

My cute egg decorators..

We also celebrated Easter! The boys had a fun time searching for eggs FILLED with candy (lucky ducks) and meeting their new stuffed animals.

This year it was so much fun to see that the boys understand the true meaning of Easter more than ever. We talked about it A LOT. 

We enjoyed time with family after church. 

The boys always have such a fun time with their cousins! I love this photo. It's one of my favorites from the day. Look at these two cute faces!

This is such a precious photo of Grandma and Grandpa with all EIGHT of their grandchildren.

The boys with their cousin Miya and dog Oreo (pronounced by Sammy as "Oriul"). And, er...not sure what is up with Elijah's outfit and pants on his head. :)

On Monday I brought Elijah to his 6-month cardiology check-up. These appointments always cause a tiny bit of anxiety for me. Not a ton, thankfully. It's always in the back of my mind, but somehow I've managed to never over-stress. On the morning of the appointment I had a stomach ache, so I worried that it was a sign of bad news to come. I over-analyzed the tech's facial expressions as she performed the echo. I convinced myself that open heart surgery was right around the corner and that the blue and red colors were mixing incorrectly on the monitor. Thankfully Elijah was oblivious of my concern, as he always is. I love that he doesn't worry about these appointments. I hope it stays that way.

The cool and collected Dr. G entered the room to explain that...are you ready for this?...NOTHING has changed with Elijah's heart since last year. AMAZING! His heart function and pressures are basically exactly the same as they were a year ago. We expected a heart cath last summer and it wasn't necessary. We 100% expected one this summer. And again it's not necessary! Dr. G's best guess is that he will need one in the summer of 2016. Sigh of relief. Thank you, God.

So that has been our week. Colorful, fun, filled with family, meaning and good news. And silliness! I'll close with a few Sammy funnies. This boy cracks me up!

As we walked out the front doors of church, we could hear music playing over the outdoor speakers. Sammy said, "Mommy! WHERE is that music coming from?" I said, "From the speakers!" He said, "Oh. I thought the music was coming from Heaven."

When the four of us were running to the car because of the never-ending cold, Sammy (who was holding my hand and couldn't stand that Dan and Elijah were going to "beat" us) said, "Let's get to the car QUICK! I CAN'T HANDLE THIS!"

Randomly the other day Sammy told me, "Mommy, you do NOT win the trophy for best human."

After tasting some frosting from a cake at Easter, Sam said, "I did not like the taste of that frosting. It was DARN ishy."


Thanks for peeking in! I hope you all had a wonderful Easter! xo

Croup: Season 5, Episode 1 (Samson)...AND a cardiology visit!

Our sweet Sammy was up at 9:00 last night with a barky cough and a teeny tiny fever. He and Dan sat in a steamy bathroom and then outside for a bit. It was fairly mild and improved enough to not consider medicine. Then I let him do the customary sleep-with-mama for a bit afterward. It's been a while since Sammy has slept with me. I'd forgotten that he likes to literally drape himself over my body and then fall asleep. Minimal sleep was occurring for the mama in the bed, so by midnight I put him back in his own bed. He did fine the rest of the night and just had a lingering runny nose and tiny cough today.

In other news, Dan brought Elijah to his 6-month cardiology check-up today. I had a bit of a nervous tummy about it (as always). Six months ago Dr. G had been surprised by how well Elijah's heart was doing, so I thought maybe this would be "the time" when we would hear "stuff" could be in the near future. I was wrong! His heart has mild stenosis (way milder than what he had expected), his valve has a tiny bit of leakage (very minimal) and heart function looks just great! We'll go back in six months! Again he told Dan that five years from surgery is a standard timeframe to expect the next surgery. That would be 2016 for Elijah, but hopefully in his case we will extend that a year or two! It always feels SO GOOD when Elijah is cleared for another six months! This is HUGE sigh of relief! And now we know that Elijah's overwhelmed exhaustion has nothing to do with his heart and everything to do with his brain.

Other than that, we are kind of doing bare minimum these days. On the days when we get Elijah to complete a sheet of homework or when I get a load of laundry folded AND put away I feel super accomplished. Dan and I are both working as much as possible while we can. This time of year provides opportunities for money for both of us, so we try to take advantage of that despite feeling like our family is being stretched in many directions. We have had a few weekend family days together lately, which has been SOOOo nice. But usually when one of us gets home, the other is leaving to go to work. I am definitely not complaining! We are so grateful to have work right now!!

I still haven't heard whether or not Dr. M #1 has connected with school. In the meantime, I've been PRAYING that Dr. M #2 will agree to write a note to shorten E's school days asap. Today I spoke with an advocate from PACER center and while she had a few good pointers for us for when we attend meetings, we are already doing everything she suggested. I'm excited to get E's days shortened because then we can actually work on lessening some of his anxieties. I want to get him swimming and playing a musical instrument. Both of these things I know would be VERY calming for him, but at the present time we cannot fit either into our schedule. Dan and I have something else in the works that we're hoping will pan out and that will help him immensely. I'll wait until we are 100% committed and then share!

Soon I will share photos from our yearly corn maze adventure! This past weekend I took the boys to Pumpkins in the Park, hosted by our city's schools. It was fun! The weather was gorgeous and the boys got candy and pumpkins and a few other treats. Tomorrow E gets to wear pajamas to school (a special class treat!) and then he has the rest of the week off. We have a few other doctor's appointments coming up this week and next, too. I hope this post made sense! I'm tired! Have a good night!

Cardiology visit

In case you are wondering if we let our children play with shot glasses, we don't.

While we were waiting to see Dr. G this morning, I overheard Elijah ask one of the fishies that was swimming in the fish tank in the lobby, "Have you seen Doctor Gremmels?" Too cute.

First, let me say that I am so so proud of my big boy for being brave during the entire appointment and for not crying once! This is the first time I have ever been able to say that!

Elijah's xray looked pretty much the same as his last one. His heart is a bit more enlarged than it was six months ago, which means that it is working a little bit harder. And he does have "moderate stenosis," that will need to be addressed in the relatively near future.

Dr. G is going to run this by Dr. Moga (E's surgeon) and get back to us, but he thinks January will be a good time for a heart cath. Possible stent work and ballooning may need to be done at that time and based on what he sees, we will have a good idea about a time frame for the next big surgery.

Overall, a great appointment! Elijah isn't growing a ton, and that's always a slight concern. But he is growing a little bit and his energy level is great (oh yes it is), so no immediate worries.

Oh, and come read about Elijah's new favorite food. :)

July weekend

Our 7-week-old baby rolled over on his own today. Twice! I didn't believe it the first time, so I put him on his stomach again to see what would happen. He pushed his little self up and rolled right over again. Is that normal?

I have had the little boys to myself for the past two days and I have them to myself again tomorrow. I attempted a trip out of the house this morning and it didn't go very well. I realized that I have not had a single good experience with taking Samson in public. When in the car or the stroller, he SCREEEAAAAAMMMMS like someone is trying to torture him! Ugh. I am learning much patience right now.



Something in my mama gut tells me that there is something brewing in Elijah right now. On Friday he had a 101-degree temp for a few hours. He has been pretty lethargic and tired for the past few days and a little bit extra crabby. When I took his temp on Friday, I literally started shaking and crying. I immediately thought there was something going on with his heart and I called his cardiologist right away. They told me to keep an eye on things, but most likely he just has a bug of some sort. I hate getting the reminders that Elijah's heart is fragile. It is easy to get caught up in normalcy and to forget about those things I wish would go away.

I got Sammy to bed early tonight and was able to take a nice relaxing bath. It is the little things like that that keep me sane! Have a good weekend, everyone! Thank you for checking in on us.

New pediatric cardiovascular center + lots of sobbing

I haven't mentioned the trip we made to Children's Hospital a while ago out of fear of sobbing like a child. Again. But with Elijah's surgery anniversary approaching and already being an emotional pregnant lady, I figure it is impossible to avoid sobbing, so..

Children's Hospital in Minneapolis recently completed construction on an incredible addition dedicated SOLELY to its pediatric cardiovascular patients. They hosted a grand opening reception, so the three of us drove into the city to check it out. Everything a heart patient could possibly need is now within one unit. Pre-op, catheterizations, surgery, recovery and short stay recovery are all in the same little spot. And patient rooms have been built with parents in mind, too, so no more begging for a sleep room at night. It is an amazing addition and we are really excited about it.

The first stop on the tour was the new Short Stay unit and I got particularly excited about this area. The "regular" Short Stay unit down on first floor is where Elijah has always gone after his heart caths and we haven't always had the best experiences there (not all bad, just not all good). It will be wonderful to have cardiac-only nurses and nice new private rooms, too, after his heart caths. I was practically skipping around the unit like a giddy little kid, and I wasn't AT ALL expecting the emotions that were about to sweep over me.

Our next stop was at a big room next door to short stay. At first all I was focusing on was Elijah because he recognized the things inside of that big room and he immediately started to panic. Dan picked him up and reassured him that nobody was going to hurt him, as I stepped into the big room to check it out by myself. I took one step in and...oh my, this is an OPERATING ROOM. Yes, I knew that before walking in, but the heaviness of it didn't hit me until I had stepped inside. This is the room where IT happens. And then I completely lost it. It wasn't just a few little tears sliding down my cheeks. It was a full-fledged sobbing that instantly shook me to the core. It was one of those sobs that you cannot control no matter how hard you try. A very nice nurse was in the room giving tours and she was immediately at my side, hugging and comforting me.

Standing in an operating room is extremely overwhelming, with all of the super high-tech equipment and monitors and lights and machines and instruments. And that table right in the middle. The table that my little boy has been on twice and will be on again soon. Past anxieties and current anxieties and everything in between shook my body and heart and soul without warning. Eventually I told myself that I had to stop the crying, after all, we were at a very public event, so I looked at the nurse square in the eyes and tried my hardest to carry on a conversation with her. At that moment, out of the corner of my eye I saw our beloved Dr. Gremmels walk into the room. I thought it was pretty cool that the one person in this world who knows EXACTLY what our son has been through (heart-wise), every little bit of it, showed up at that very significant moment. I kept it mostly together, but almost lost it again when I saw him. He came over and gave me a hug and reassured me that what I was feeling was normal. (Really? Because I don't see anyone else here freaking out!)

I pulled myself together and we toured the rest of the unit and we even ran into Elijah's heart surgeon, Dr. Moga. He told Elijah he was "lookin' good" and gave us his trademark smile and wink. Every time I see Dr. Moga I get emotional, but I was able to hold back the tears this time (probably because there were none left).

Not only is this new unit going to be a lot more convenient for patients and parents (and doctors), but it is a huge step toward keeping little heart patients healthier, as well. Patients will not need to enter the hospital's regular PICU after surgery, which will keep them protected from sicknesses that might be floating around down there. This will also free up bed space in the PICU for other children. Check out the virtual tour of the new cardiac patient rooms, which include private bathrooms, refrigerators, sofa sleepers, tvs and xbox 360s.

This new unit is a really big deal and we are really proud of it. We are grateful we were able to see the new area and we feel so blessed to live in a city with such amazing facilities, nurses, surgeons and doctors.

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!

How is Elijah doing these days?

Communication

We are so thrilled with the improvements in speech Elijah has made over the past few months. Four months ago he said maybe five words. Three months ago he said about 40 words. Now? He says a couple hundred different words. They are "his" version, of course, and Dan and I usually have to translate to others, but this is huge and very exciting. He even said his first two-word phrase the other day! He said, "Bye bye, Dada!"

His speech therapist just re-evaluated him and the results showed that he is basically caught up! I get little tears in my eyes writing those words because his language explosion has come as a huge and very pleasant surprise to us. He does still qualify for speech therapy, though, because he could use some help with saying the beginnings of words and making the words he says a little clearer in general. He is still using some nasal sounds to say some of his words and that goes hand-in-hand with not moving enough air through his mouth. He has improved a lot with this, so we continue to work with him by encouraging him to use whistles and kazoos and to blow air through straws, etc.

His sign language has taken off, too! A few months ago he had maybe two or three regular signs that he used. Now he will sign (or at least try) any word we show him. Amazing!

Gross motor

Elijah is still working hard to walk independently. He uses his walker more willingly now and he cruises along furniture much more comfortably than he did even a few weeks ago. We still don't know the reason for his very low muscle tone and whether or not his tethered spinal cord surgery has been the reason for his recent improvements or if it will help him with his walking. We would like to think that the surgery has helped, but it's hard to say for sure.

The fact that he is steadily getting stronger is a promising sign. He is now climbing stairs like a monkey, and even going back down them on his own. He wasn't even close to climbing stairs a month ago, so this is another huge feat. He crawls around the house like crazy and he even has a funny half crawl/half walk thing he does sometimes. One thing that we noticed an immediate improvement on after his surgery in June was his willingness/ability to reach out of his immediate comfort zone to get things. This is something he refused to do before, but he was doing it freely within a week of his surgery. Releasing that tether must have made certain movements a lot more comfortable for him.

Social

Elijah's social skills are something I have spent a whole lot of time worrying about. Because of all of his hospital time and sick time he spent a lot of the first two years of his life with just us. Until recently, he has not done very well while in large groups of people, or even medium groups of people or small-to-medium groups of people. It's just something he wasn't used to, so it overwhelmed him.

About a year ago we found a daycare for him that we loved (and still love). It's a small home with a handful of kids for him to interact with. He has gone through some periods where he has been pretty uncomfortable at this daycare, even as recently as one month ago. Some days he wouldn't eat any food, or he wouldn't move from one spot, even though he was physically able to, or he would just seem out of sorts and overwhelmed.

We have learned that he is definitely a kid who needs a little nudging to be a part of social situations because without a nudge, he would be content spending the rest of his life with just Dan and me. Sometimes I feel bad for pushing him into situations that he isn't necessarily comfortable with, but ultimately we know this is the best thing for him. As we suspected it would, his daycare setting has given him confidence that Dan and I never could have given him on our own.

In the past few weeks a switch seems to have been flipped (his daycare provider's exact words) and he is a totally new man! He cruises everywhere, he has been eating and sleeping well and he is playing well and interacting with the other kids.

With that said, Elijah still does have a hard time in some social settings. In really large settings, like the Splash Park we went to last weekend, he still tends to get pretty overwhelmed. When he gets to the point of feeling like he isn't comfortable, he tends to stay in one spot (preferably close to me or Dan) and just observe his surroundings.

We are in the midst of his biggest developmental spurt yet--socially, physically and verbally. I cannot describe in words how wonderful this makes me feel. It is amazing!!!

Cardiac

We will be taking Elijah in for a heart check within the next month or so. The plan back in April (which could very well be different next month) was to do a heart cath this fall and open heart surgery (valve replacement) next spring.

Other

Elijah's weight is good. He lingered right around 27 pounds for almost a year, but recently he broke the 28-lb mark, so this is great. His height hasn't moved much within the past year either but we aren't too worried about that right now, especially with the recent genetic testing all coming back normal.

He is slowly getting past some of his texture issues. He is still pretty selective about putting anything with a unique color or texture in his mouth, but luckily there are a lot of foods he willingly eats. Overall, he is a very good eater. I always call him my little dairy man because he is totally head over heels for all dairy foods.

Potty training is on the horizon, but we haven't begun yet. I don't think he is 100% ready at the moment. We will give it a try this fall.

He still loves trucks, trains and his new recent love is airplanes. I don't know how this kid can hear planes as well as he does. It's pretty amazing. We'll be sitting inside with the doors shut and the air conditioner running while watching Thomas the Train and he will smile and do the sign for airplane and say "AAAyyyyyy!" I'll listen closely and sure enough, I'll hear the ever faintest hum of an airplane in the sky about a hundred miles away.

Elijah is still in PT (2x/week), speech (1-2x/week) and OT (1x/week) and we will be continuing this through the fall/winter, and hopefully beyond that as well. His name has been put into the drawing for receiving hippotherapy this fall, so we are hoping he is chosen!

We thank God every night for the health He has bestowed on Elijah this summer. It has been such a welcome, nice reprieve from the illness-ridden fall/winter/spring of 2008-2009. In a few weeks we will check to see if the Pneumovax booster helped to create the antibodies he was lacking during his immunity check in June. Please pray for this!

There is much more I could say about our precious boy, but I'll stop here. He is doing amazingly well in every arena and we are so thrilled about the huge spurt he is going through right now. We just love this little boy to pieces!!

Elijah's special heart day

Beautiful boy (pointing at the grass that he doesn't like).

Since this is Elijah's big anniversary day, we decided to make it a special day for him. I got a bunch of red and heart-shaped balloons and we had a fun balloon fight tonight. Then I scraped the white frosting off the cupcakes I got from the bakery (I don't have time to make cupcakes!) and put some red frosting in place of it. We had fun getting messy with the cupcakes after dinner. Elijah wasn't too sure about putting it into his mouth, but he took a few licks and did a good job of smearing it everywhere. I got a few other fun red things for him to enjoy tonight, to go along with the heart theme. We had a really fun evening. The weather is awesomely perfect outside today, so we went for a walk tonight and Elijah walked with his walker on the sidewalk for the first time! Big boy! He has had sooo much energy in the past couple days. It is wonderful. The fact that he has energy to expend is such a great sign and it makes me giddy to see it.


Red cupcakes and pretty red flowers.

One year ago, Elijah's body was in great distress. He was adjusting to his new anatomy post-surgery and Dan and I were scared and exhausted. Thinking back makes me so very very grateful for where we are at right now. It is amazing what a year (and a surgery) can do. We thank God for everything we have been given and all of the progress our little boy has made in the past year. Happy heart anniversary, Elijah! We love you sooo much.


Going crazy with the balloons.


Here, you try, Mama.


Hmmmmmmmm.


What is this on my lips.


Look at him go! Sooo proud!


Throwing his new ball.


Silly-face man pointing at the grass. He was not a fan of the grass touching his skin, as I suspected would be the case.

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!

Awesome cardiology report!

I hope everyone is cozy at home right now, spending quality time with family. We are! Because of Dan's dad's unexpected hospital stay (he's home and doing just fine!), we are spending tonight at home, just the three of us, and tomorrow with Dan's whole family, instead of the other way around.

Elijah's cardiology visit went perfectly today. Minus some trauma from having blood pressure taken and getting weighed and measured, everything went great. Things look perfect post-cath, and we don't expect to go back for four months, wooohhooo!! Dr. Gremmels even took us back to the secret room with all the computers in it and showed us the live "video" of his cath from last month. It was soo incredibly cool! It's so hard to believe what can be done by inserting a tiny catheter up the vein in his groin and into his heart. We got to see the bloodflow throughout his chest and we got a clear picture of his heart's anatomy. It is all so much bigger than I had ever pictured. I always thought everything they "worked" on was on the left side of his chest, but that's not true at all. They do work throughout his entire chest area, and plus, his heart is pretty huge. On the video we could also see all of the metal he has inside of his little body. He has about seven looped wires going up the center of his chest, meant to keep his sternum closed after surgery. Then he has a stent and the 12ish coils dancing around all over the place as his heart beats.

We finally asked The Question: What will Elijah's limitations be, and what is his long-term prognosis? I have been so afraid to ask this question, so we never have till now. I should have asked it sooner, because I think it would have given me some peace. Dr. G's answer was awesome! He said that Elijah should be able to play any sport he wants to play. He won't be the fastest and he won't be the slowest. He WILL tire more easily than most. Because he will never be "the best" in sports where speed or endurance is a factor (soccer, football, hockey), he most likely wouldn't want to continue with these sports to a super competitive degree anyway. Contact sports may limit him when he is within one year of a heart surgery, but other than that, we shouldn't try to limit him. As far as prognosis for the future, Dr. G thought that Elijah should live a normal life, going into adulthood. Having had so many surgeries, risks are obviously added to his life (heart failure, cardiac arrest), but they aren't likely (1-3%). Now, I know nothing is ever certain, but it feels so good to have Dr. G confidently say these things to us. He knows the inside of Elijah's body better than anyone, so his words are comforting.

His next open heart surgery will most likely be sooner than we had expected. Dr. G thinks we should be able to stay away from the hospital in 2009 (minus a heart cath or two), but 2010 is most likely his year for OHS #3. Kids with his anatomy typically need the valve replacement sooner than most, but after this next one, we SHOULD have quite a few years "off."

That's it for now. I just wanted to get this update written so tomorrow I can focus on Christmas, and posting fun pics and video of STEPS! You all are such an important part of our lives. Thank you for being so supportive of our family and for loving us. I don't know what I would do without all of you! God bless you all...and Merry Christmas! oxoox

Cath date and funnies

It's totally strange how this always works out, but Elijah's big dates (surgeries, big appointments, etc.) always seem to fall on dates that have other significance. Again, this is happening. His heart cath will be on November 26th, which is the day before Thanksgiving, which means we will probably be in the hospital on Thanksgiving for a bit. I guess the day before Thanksgiving isn't technically a significant day, but close enough. Hopefully we will be out of the hospital in time to eat some yummy food. Dan will cry big huge tears if he can't eat a heap of stuffing as tall as our house.

The plan for Nov 26th is that Elijah will have a flow scan done on his lungs in the morning, followed by a heart cath at 11:30. Please say prayers about this. Putting big dates like this on the calendar makes me anxious.

I owe pics! I don't have any right now, so I'll get some this weekend. Right now I have a few funny things to share about our silly boy.

Yesterday while we were chatting with Dr. G, a kid in the room next to us was groaning/moaning pretty loudly. We could all hear it but no one acknowledged it. All of a sudden Elijah started imitating him and groaning back. Dr. G asked him if he was copying his friend from next door. We all giggled.

Elijah has been trying really hard to say words. When I change his diaper every morning, he plays with the buckles that are on the straps on his changing table. His word for "buckle" is "gung-gung" and he repeats it over and over. He finds buckles fascinating for some reason. Buckles, wheels and doors.

I have been trying to teach him the meanings of "stop" and "go," so I will push one of his little cars around on the floor as I say, "Gooooooooooo....Stop!" Well, the other day he was lying on the floor pushing a crayon around like it was a car (he pushes everything around like it's a car) and he was saying, "Daaaaaaaaaaa....Da!" I think that is his version of Goooooo, stop!

I think I mentioned before his love for a song we hear on PBS a lot about shapes. Whenever I sing it, he does these jerky movements with his arms to "draw" out the shapes in the air like they do on tv. Now, any time he sees a circle, triangle or a square, he starts doing his little jerky arm dance without any prompting from the song. I have to get this on video soon. It is just the funniest thing. Have you ever seen Elaine dancing on Seinfeld?

Elijah and I have a pretty low-key weekend planned. I'm praying for fewer tantrums than we experienced last weekend. He and I both woke up sick this morning (again for him) so hopefully we can get rid of the gunk with some tlc. Dan will be working all weekend. We will miss him.

Dr. G saves the day

Elijah's cardiology appointment went well this morning, minus the contortionist act I had to do during his echo. He weighed 25 lbs. 3 oz., which is almost a one pound gain from last month! He certainly is not growing taller, though. He has been hovering right around 30.5-31 inches for about six months now. His oxygen sats were at 100%. I know, I couldn't believe it, either! I still get a little teary when I see such high numbers on that monitor that I dreaded looking at for such a long time. His blood pressure was pretty high. More on that in a bit. His heart function looked perfect, thank you, GOD, and no fluid retention was seen on his chest xray.

The only issue right now is the narrowing of his right pulmonary artery, and we already knew about this. Dr. G thinks that this is causing some disturbances in his body. This could explain the puffy eyes, and also the high pressure in the right side of his heart, which was revealed through today's echo results. The right side of his heart will always have to work extra hard, but right now the pressure on that side is even higher than his already high baseline is.

The plan is to get him to the cath lab in November or December (instead of January, like we had been planning) so Dr. G can widen the stent in his pulmonary artery. This will hopefully help blood to flow through the artery more easily which should decrease the pressure in the right side of his heart. In the meantime, we will give him Lasix as needed for his mild fluid retention, only when he is appearing extra puffy, and otherwise continue on with life normally (normally, ha!).

I feel a thousand times better after talking to our wonderful cardiologist and having him do such a thorough exam of our little boy. I still think Dr. G should just move in with us. We would even give him our bedroom!

Totally annoyed

We got to the clinic in Minneapolis this morning and when we checked in, the lady at the front desk said, "Uhhhh, Elijah's appointment is tomorrow, the 16th." Dr. G's nurse told me on the phone, yesterday, to come in "tomorrow." I think that would be today, right? Arrgghhh!!! She said she would go back and see if "the doctor" could fit us in. We waited a while and she came back to tell us that another doctor, who we had never heard of, would take a few minutes to review Elijah's chart and then would be right with us. A few minutes to review Elijah's chart? Ha! Dan and I gave the I-don't-think-so look to each other and told her we would come back in the morning to see Dr. Gremmels.

So...thank you for the prayers. Could you maybe extend them one more day? Thanks! I'll post again tomorrow with actual news.

p.s. Elijah's eyes were NOT puffy this morning and his lips looked a lovely shade of light pink. Praying it stays this way and tomorrow's appointment confirms that nothing is wrong with our little man's heart.

Praying for a good report

Somehow we got fit into the schedule tomorrow, so we will be heading to Dr. Gremmels' office in the morning. I'm so thankful for this! I have been such a huge worrier lately and tonight I was dreaming up red (un-pink) lips, so we will see if I'm crazy or if that is for real. I have other worries to express as well, so I'm praying hard that everything checks out ok.

There's one really cute thing from tonight I have to share. Every night before I put Elijah to bed, I pray with him in his rocking chair. Even if he is fussy, I will allow him to fuss and squirm in my lap as I say a prayer. He has fussed and squirmed for most of the past eight or so nights, so tonight I was surprised when he laid his head on my chest when I started to pray. I usually pray for the same things, so I'm sure he recognizes what I'm saying as a prayer. Tonight, half way through, he pushed himself up, laid down sideways on my chest and folded his hands together. He looked up at me proudly with his hands folded. My heart melted onto the floor. Even though he has been a beast lately, he has such a sweet soul. He will always be my sweet little boy.

Please say a prayer for Elijah's card appointment in the morning. We believe that we will receive ONLY GOOD NEWS.

Thank you

I want to say thank you to all of you who have been so supportive in the past few days/weeks. We have received so many uplifting comments and emails, and we are so thankful for them all. We have such a wonderful group of people supporting us and praying for us. THANK YOU.

Now for some medical stuff. I talked to Elijah's pediatrician about the croup/breathing issue and she said that it was treated appropriately (steroids and nebs) but if we wanted to come in to discuss things further, we can. She didn't seem concerned, and I haven't decided if I should be or not. I am terrified of another middle-of-the-night episode happening again, but I don't know that there is anything we would be able to do to prevent it besides running his humidifier every night and giving him nebulizer treatments twice/day, both of which we do consistently.

For the past few weeks, Elijah has had slightly puffy eyes when he wakes up in the morning. I called Dr. G about 10 days ago and he said to call back if it was still happening in a week or two. It is still happening. I called him yesterday and he wants to see Elijah in the clinic soon. There is a possible opening this Thursday (really hoping we can get in then) and if that doesn't work, we won't get in till next week sometime. I'll find out today when the appt will be.

It is possible that he just needs to be treated with some Lasix since his pulmonary artery is a bit stressed right now and may be causing his body to retain a little bit of fluid. Hopefully this is the extent of it and we can go forward with our January cath plan. It will help ease my mind to get him checked out by the awesome Dr. G.

Thank you so much for checking in on us and for keeping our little man in your prayers. We love you all so much!

Monster Porta

Belly button


This is one of the exercises Elijah's PT suggested we do with him to help him strengthen his core muscles. Since he usually refuses to put weight on his legs, putting him on his knees is almost as good when it comes to building strength in his core. He actually tolerated this for a few minutes today.


Looks like maybe he's up to something?


He put the toothbrush in his mouth. By himself!

You would never know from these pictures that Elijah was an absolute BEAST tonight. He and I spent the day together while Dan worked at the dropzone. Everything was great until supper. We had a good morning visiting my cousin Trevor and his wife Angie in the hospital and meeting their new beautiful baby girl. Elijah was great at the hospital. He took a good long nap today, and afterwards we went for a walk and went to the park and everything was happy and sunshiney.

Then I sat him down for supper and this is when things took a sharp, wrong turn. I gave him a sandwich and I was going to also give him some spaghettios mixed with veggies (his favorite). He took one bite of his sandwich and one bite of spaghettios and one sip of milk and then decided to freak out. His cup was sent flying across the room, his sandwich was suddenly in my lap, his spaghettios were all over his face, his plate flew across the table, and his body was thrashing, causing his chair to rock back and forth. I was in complete awe. I was thinking, what in the world just happened? I gave him one chance to calm down and eat more of his food and explained that he wouldn't be getting fruit or yogurt if he didn't eat his spaghettios and sandwich. More body thrashing took place, so I removed him from the table and put him in the living room on the floor and walked away.

He sat in the same spot for a good 5 minutes and screamed his head off. I sat at the table, faced away from him, and cried into my hands. I know that disciplining Elijah is important, and we will do it, no question. It is just hard. The kid has been through so much. As I sat at the table, I thought of his strength and of him lying in a hospital bed and about how fragile his life seems to me sometimes and I just wanted to run over and give him whatever he wanted. But I didn't. I just sat there and let him work through it.

Eventually he scooted into the kitchen and contentedly did his usual opening and closing of all the cupboard doors. After a while I went over to him and asked if he wanted a hug from Mommy. I went to reach for him and all I got was another round of body thrashing and screaming.

He tried to get into the pantry, but I said no, so more thrashing and screaming followed. I brought him into the living room and sat him on my lap, facing me, which he usually loves. More thrashing and screaming. Again, I set him down and let him do his thing. After a few minutes he was playing with his toys but any change in his life (me trying to give him his nebulizer treatment or change his diaper or put on his pajamas) and he would totally freak out. I turned on Baby Signing Time and he was happy. In my gut I feel I shouldn't have let him watch it, but I think I may have pulled out all of my hair otherwise.

After that it was time to get ready for bed, and more crazy behavior took place with every little thing I tried to do. This is so confusing for me. I mean, I understand that we're starting the terrible twos, but really? Is it this bad? I'm sitting here wondering if there is something more. Again I'm worried that there might be something wrong. Is he not feeling well? Is it his heart? Is it nothing?

I had a bad dream last night. I have these a lot. I call them my PTSD dreams. I was feeding Elijah and there were a few people around us, watching me feed him. Suddenly I noticed that his breathing was different. It sounded a lot like it did before his last surgery in April, really stressed and shaky. I looked at his lips and they were a dark red color. I said to the other people, "His lips have changed, this isn't good," and I reached to pick him up. I was very calm on the outside but freaking out inside. I woke up in a panic.

It just plain sucks always wondering if something is really wrong with my baby. I'm so tired of it. I just want one week where I don't have to worry about his heart. If I knew his 3-hour tantrum tonight had nothing to do with his heart, I feel I'd be able to handle it much better, and without any tears (on my end anyway). So here I go, another sleepless night of worrying and wondering....

Four-month reprieve

Belly button fetish. Gotta be pushing it like a button at all times!

Elijah's cardiology check-up today went very well. Well, it was good in terms of news we got. It wasn't so good in the traumatization aspect. He freaked out about every little thing...getting weighed, getting blood pressure taken, being looked at by anyone besides Dan or me. His sats were at 99%, which is just awesome, and Dr. Gremmels was pleased with how he has been doing. The only issue right now is a slight murmur Dr. G could hear, which is caused by the narrowing he has in his pulmonary artery. A stent was placed in it during his surgery in April, so it is likely he is outgrowing that stent. Dr. G didn't see this as being a super pressing issue, but that we should address it within the next 6 months.

The plan is to have another heart cath done in January to make that stent bigger and also to check on his collaterals and how/if they have grown since surgery. The same day, right before the cath, he will also have a flow scan done of his lungs. This will show how evenly the blood is flowing to each lung. The hope is that there will be equal, or at least very similar, bloodflow.

He hasn't gained much weight since the last visit in June, but Dr. G didn't seem too concerned. Since he is moving around more, he is most likely burning off the calories quicker. He certainly doesn't have a problem eating food.

That was it! Our little man is doing great heart-wise and otherwise. I can't believe we have FOUR MONTHS before we have to see cardiology again. This is the longest reprieve we have ever had from them. Yaayyy!

There is one little weird thing we have noticed lately that we cannot figure out. Elijah has been getting these little red bumps all over his body that come and go within a matter of minutes or hours. They look like really small mosquito bites. They don't seem to bother him and the nurse we talked to said not to worry unless he gets a fever or has other strange symptoms. At first I thought maybe he had little bugs in his bed, so we washed all of his bedding. Nope, that wasn't it, because they were back the next day. Could it be an allergy to something? Does anyone have insight? It's driving me crazy! It's not like there are a ton of them, but probably 4-5 on his body at any given moment, and they usually come in clusters.

Good things and some scary, too

Sorry for being so absent lately! My dad, stepmom and little brother have been in town since Friday and we've been busy catching up and spending time together. We have had a really nice, relaxing weekend and they have been eating Elijah up! He totally loves the attention and he has done the flirty face even more than usual the past few days.





This afternoon we had a dedication for Elijah at our house. Dan's dad led it, and Elijah was a very good boy. He kept throwing flirty glances around the room at people as Dan's dad was talking. It was hard not to laugh at the cuteness. He is going to LOVE being in groups of people when he gets older. He is a complete, total ham.


Reading and driving at the same time


Hanging out in the LoveSac with Uncle Joel


Sitting on cousin Dane's lap, in between text messages to his girlfriend (Dane, not Elijah)


The boys watching baseball


Reading his new books from Grandma and Grandpa



Ok, saving the icky news for last. Early this morning at 2:00, I heard Elijah crying through the baby monitor. I listened closely and I could hear that he was having a very hard time catching a breath. We ran into his room and he was REALLY congested. Like, more congested than I have ever heard him before. Every breath was a huge struggle for him and you could just see his little chest working so hard. When we first turned on the light his lips and face were a lovely shade of blue/purple and that's when I started to panic. After we gave him a nebulizer treatment, we took him into the bathroom and turned on the shower as hot as it would go to get him to breathe in some steam. He still sounded horrible. We debated for 2.5 hours whether or not to take him to the hospital. Since things weren't seeming to get better, we headed for Children's. On the way, his disposition was improving and he was smiling and babbling. By the time we got off on the exit ramp (30 minutes later), his breathing sounded much better. I looked at Dan and said, "Ok, I don't know what to do. Maybe we should say a prayer." Dan asked that we please be led in the right direction because going to the hospital with a heart baby unecessarily is a HUGE PAIN. Lots of poking and xraying and waiting in an ER and little sleep and extra cautious doctors and nurses. But of course, if that was what he needed, we wanted him there. Dan said, "Please give us a sign!" We were almost to the hospital and I was thinking, hmmmmm I haven't seen any signs yet so maybe that means we should park and go inside. Just then, Dan said, "UHhhh, is THAT a big enough sign?" I looked ahead and there were HUGE road barriers a half a block before our turn into the hospital ramp. One sign said "Road closed" and the other said "detour." We laughed and saw that as an opportunity to go home.

Once home, he was a bit better. He has been coughing all day, which is good because he needs to get the junk out. I'm a bit worried about tonight and how he will do but we'll just have to wait and see.

Last night was a reminder to me that nothing is EVER "normal" for Elijah. A simple congested chest? Not simple. It means blue lips, concern for his heart, concern for his lungs... It's an awful feeling. His heart is "fixed," yes, but we will always always need to be on our toes.

Thanks for checking in on us. If you wouldn't mind, maybe say a little prayer that this congestion passes quickly. No more blue lips! I suddenly can't stand the color blue.

Excellent heart report from Dr. G

More kissy lips while waiting for the doctor

Elijah's cardiology appointment went great today! He was very well behaved during the echo (these take quite a while to do, so I was hoping he would handle it well) until the very end when the tech accidentally scratched his chin with the wand and made him upset. Other than that, he was very comfortable and happy. The echo results showed that his new valve is working perfectly and the ventricular pressures in his heart are perfect as well. After a VSD (hole) has been surgically closed, it is not uncommon for pressures in one of the ventricles to be too high because of the new way the heart is pumping blood. That's not a concern for him right now and everything appears to be working as good as can be expected. On top of that good report, he has no feeding issues, no breathing issues, no sleeping issues, no color issues and no need for medicine. Elijah is a superstar, as Dr. G calls him.



We will bring Elijah back in to see Dr. G in 3-4 months, and he will need another heart cath sometime around October to see if his crazy MAPCAs collaterals are behaving. Since he has Tetralogy of Fallot with Pulmonary Atresia (as opposed to Pulmonary Stenosis), things are always going to be a little bit more complicated because his arteries just aren't "normal." Pulmonary Atresia means that his pulmonary valve was totally absent at birth (Pulmonary Stenosis means that the valve is just narrowed). With no valve to deliver blood, his body created a bunch of new pathways so blood could get where it needed to be. These pathways (called collaterals/MAPCAs) act as arteries, but they are not true arteries, so they can be twisty and narrowed and they are typically much more complicated and fragile than normal arteries. Sometimes they are duplicated and a couple different collaterals can be sending blood to the same place, which isn't good. During a heart cath(eterization) Dr. G can see all of those collaterals and figure out what parts of the body are receiving too much, or not enough, blood from them. He can do most collateral management in the cath lab, which is good because that is all done through a catheter inserted into a vein in the groin. Sorry if I bored you, but that was a long way of saying that Elijah will most likely need many heart caths in his young life. This next one will be #5. When he is 18 months old he'll have had two open heart surgeries and five heart caths, amongst a few other little surgeries unrelated to his heart.


See? He makes this face constantly! I love it.

I asked Dr. G to give us an estimated guess about when the next open heart surgery will need to happen. He said that on average, TOF babies need valve replacements 4-5 years after their final repairs (some kids need them after 1, some after 9), but since the Pulmonary Atresia/MAPCAs complicates things, his best guess for Elijah would be 2-3 years from now. Dr. G is ALWAYS very conservative in his guesses, so I'm hoping this means we'll have at least three years before we have to do another OHS. Really, all we can do is wait and see and just enjoy every day we have with this awesome little boy.


Finally! A picture with Dr. Gremmels. If only I would have noticed that Elijah's eyes were half open. Oh well, at least he's smiling!


The paper on the exam tables is the most fascinating thing in the world