Tuesday, November 30, 2010

Picking out a Christmas tree

We had very relaxing holiday weekend. Thanksgiving dinner was at Dan's parents' house and it was delicious, as always. We spent a long day there. Elijah ate his pumpkin pie while resting his head on the table. He lost it the second we arrived home. It was a tiring day, but most definitely worth it.

The rest of the weekend was spent mostly close to home. Samson still had some congestion and coughing and Elijah had a new cough, as well, that turned into a little bug of some sort on Monday morning.

We ventured out on Saturday to get a Christmas tree and we fell in love with this little place. We'll definitely head back next year.

We were even able to meet up with some family while we were there. Elijah and his sweet little cousin Miya have a cute little bond. They are so funny together, always hugging and swooning.

Our big boy Sammy enjoyed the experience, as well. As long as he is moving and involved in the action, he is happy!

Santa had taken a lunch break, so we missed out on seeing him. We took advantage of his empty sleigh, though!

Saturday, November 27, 2010

Thumbs and trees

This boy has found his thumb! Please don't mind the goopy eyes and food-stained face.

We got all set up with a Christmas tree and decorations today! As Elijah was climbing the stairs after our tree was up, I heard him say to it, "Don't be sad. I be wight back, twee!"

Friday, November 26, 2010

Our Thanksgiving weekend so far, in numbers

1 - ears that are infected

2 - sore throats

3 - congested noses

2 - coughs

1 - people who are starting to understand the concept of potty training

2 - people who are already potty trained

6,790 - times a certain toddler has asked his mommy to scratch his "itchy neck," which happens to be the same thing as a tickle

1 - little boys who played so hard at Grandma's house on Thanksgiving Day that he couldn't stay upright while eating dessert or hold himself together once we got home

1 - chubby baby who constantly wants to eat and/or be held by a moving adult

9,941 - calories consumed by our entire household since Wednesday at 4:00pm

3 - people excited about getting a Christmas tree and putting up decorations

4 - times a very tired three-year-old placed his own foot into his little brother's hands and then proceeded to yell at him: "NO GRABBING, SAMMY! NO TOUCHING, SAMMY! NOOOOOOO, SAMMY!"

79 - times the husband in the house has pinched the butt of the wife in the house

2,112 - times a cute 6-month-old has grunted

5(ish) - hours that a certain female member of the house has spent cooking/photographing/blogging

Wednesday, November 24, 2010

The tasty gingerbread house

Ten seconds after completing construction on our first ever gingerbread house, Elijah dug right in.

Not bad for a 50-minute family effort!

Snow, delicious snow!

He didn't take a break, and I was ok with that.

It was fun to see him enjoying himself.

His tummy eventually became frosting-filled.

Woooo! Sugar!

At least he assisted the gingerbread man with his snow removal.

Monday, November 22, 2010

I love our home

This boy is a natural eater. I cannot believe how much food he is able to squish into his belly every day.

We had another fun weekend. Having Dan home on the weekends is wonderful!

Here is something we see around our house a lot. Elijah likes to play Grocery Store, which means that there are often grocery bags filled with various items strewn about our home.

This morning I found my shoes in a grocery bag, along with a package of barley, instant mashed potatoes and a few of Sammy's toys.

Saturday night Dan and I were in the kitchen making dinner when Elijah walked around the corner. "I have to go potty." WHHHAAAAAAT??? Squeals and scurrying ensued as we ushered him to the bathroom and sat him on his potty chair. Two minutes later, I heard, "I DID IT! I GO POTTY!" I went over to peek, and sure enough! AAHHHhhahhahahhhhhh, the amount of dancing and high-fiving that occurred was a little bit absurd. Then Elijah said, "Candy, please." Ohhhh, I see. The potty thing is starting to click and now he knows to use it for personal gain. Which is fine with me! At least something is motivating him!

We asked him a lot more yesterday if he wanted to sit on the potty chair and every time he said, YES! And every time he went potty! And every time he got candy! Now that we know it is clicking, we can get much more serious about this potty training business. YAY!!

Sammy is working on sitting up on his own. He is gaining strength quickly. His napping is still all over the place, and he still has a lot of fussy-needy time during the day. He is CHUBBY. His legs are so fat that we can't get socks to stay on his feet.

I am beyond excited about the short work week and the upcoming long holiday weekend with my men!

Sunday, November 21, 2010

Saturday, November 20, 2010

Thursday, November 18, 2010

Mystery man

The cable guy was at our house tonight and Elijah (Mr. Friendly) repeatedly said to him, "HIIII! I'm Mystery Man!" I have never in my life heard him say this before. It was both strange and cute.

Then when the "tay-koh" (cable) guy left, Elijah cried. "Tay-koh maaaaan, tay-koh maaaan! Tay-koh man coming back?" "No, sweetie, he has to go home to his family now." Ten minutes later: "Mommy, is Tay-koh man coming back?"

The "tay-koh man" didn't even look once in Elijah's direction, so I'm not quite sure what Mystery Man saw in him.

That cute bottom lip comes out a lot

Wednesday, November 17, 2010

Yet a few more reasons why preschool is great for him

"Elijah, how do you spell your name?"


"What is your full name?"

"E-ijah Dan-o Po-uh!"

"What is Mommy's name?"


"What is Daddy's name?"


Tuesday, November 16, 2010

Croup: Season 3, Round 3

Lately I've been thinking that it has been a while since we've gotten a visit from Croup. That thought is always followed by me wondering when his next visit will be.

I need not wonder anymore because he came last night, that trusty friend of ours! We gave Elijah a racemic epi neb at 9:00 and high-dose Pulmicort at 3:30. I felt a little calmer last night than in the past. I'm not sure why that was. Maybe after 84 times (ok, slight exaggeration) the stress starts to level off?

I realized last night that if we could only figure out a way to get Elijah to CALM DOWN when he's having an episode, things would be much less scary. When he isn't screaming his head off, he can usually breathe normally for a few breaths at a time. Hmm, I'll have to ponder this.

The second time I went into his bedroom after hearing the stridor, I went to grab him and he said in such a sad little voice, "Sorry, Mom." Oohhhhh. He feels bad about this?! I told him to NEVER feel bad about sickness and gave him a squeeze. Then the frantic screaming started and we couldn't get him to calm down or breathe.

Thanks to his medication and the cold outside air, everything turned out just fine.

And ironically, the place that has kept our little boy alive time and time again, Minneapolis Children's Hospital, is doing a Give To The Max day TODAY. If you are willing and able to donate anything at all, $10 even, please do so!

Monday, November 15, 2010

A daddy-filled weekend

Samson is in the Christmas spirit!

Our weekend, ahhhh, our weekend. I knew it would be nice to have Dan at home for an entire weekend, but I had no idea how nice. We had our first snowstorm on Saturday, so we spent the entire day at home. Yesterday we ventured out a bit, and it was WEIRD not having to do everything myself. Getting the stroller out of and back into the trunk, pushing the stroller, wiping drool and bottoms, etc.

Sammy has another little cold, mostly just a cough. Other than that, he is doing great. His naps are still sporadic, but he is such a sweet little happy guy. He is LOVING solid foods. I seem to remember it taking Elijah a good month before he was convinced solids were any good. Not our Sammy! This boy is busting out of 9-month clothes!

Elijah has been saying some of the funniest things lately. I started writing them down last night. Here are the ones I have so far:

"Wet's take a baff. I am dirty boy."

"I am a big monkey."

"I am a big E-ijah. Sammy a cute wittle baby."

"Wook, Mom, it's the moon! Is the moon stuck in the sky?"

"Daddy, eat the wall!"

And I will end with more Santa Sammy pics..

Friday, November 12, 2010

Thursday, November 11, 2010

Something to remember

Last night Elijah and I were being silly in the living room. Tickling and funny faces were involved. During a silliness lull, I wrapped my arms around him and held him tight. He wrapped his arms back around me and said, "MMmmm, I wuv mine mommy."

Monday, November 8, 2010

He eats!

I know I'm totally biased, but isn't this boy handsome?

Guess what? Samson now eats big boy food! I started feeding him oatmeal yesterday and he loved it! He is a natural eater, as I kind of guessed he would be given the fact that I am his mama. And he appears to have found his thumb, which we are feeling might become a habit. Elijah was never a thumb sucker or a pacifier man, or anything, so this is new to us!

Any time I take photos of Samson, Elijah says, "Picture of E-ijah?!" So here is my silly Elijah photo of the night!

My apologies

I had to delete some recent posts/comments because they were counterproductive and they strayed from the focus of this blog! Sorry if that causes hurt feelings, but it's what I feel needs to be done to keep up a positive blog for our boys.

Cuteness, sickness and venison

Too much drama!!! Let's focus on what the blog is really about! OUR WONDERFUL BOYS!

I love this cute, scrunchy, happy face Elijah makes when he is enjoying something (below). And check out all of that hair! Tell his parents to get him a hair cut!

Samson was sick all weekend. Nothing terrible, but he has a little cough, a congested nose (especially after sleeping) and goopy eyes. You can see in the below photo that his eyes are lacking the usual sparkle. And guess what?! He doesn't like to be left alone. EVER. Not only that, but he has to be in a set of arms at all times. This has resulted in a terribly achy and sore back for the mama. I have never quite experienced back pain like this before. Not so much fun!

Here's a cute thing from the weekend. This conversation took place a handful of times:

"Mommy, where Daddy at?"

"Daddy is hunting with Grandpa at Grandpa's cabin this weekend."

After some thinking..

"Gwappa say, 'Hi Daddy! Wet's go shoot deer, Daddy!'?"

"Yes! I bet Grandpa did say that."

"Daddy bwing steaks home?"

"It's very possible!"

"Daddy hunting wif Gwappa?"

"Yes, sweetie, Daddy is hunting with Grandpa."

And Elijah called it. Dan shot a buck, so a freezer full of venison will be ours shortly. Good job, Husband!

Ok, I'm noticing a serious lack of Sammy photos. It's because when he is awake, he is usually in my arms!

I still like to smooch on this delicious neck occasionally and I am thankful that he still allows it..

One of the many ways preschool has been great for Elijah is that he has become much better at doing things for himself. He can now put on his own coat and hat! The first time he did it I about fell over. Sometimes he doesn't get it quiiiiite right, but I'll take it! :)

There was so much imaginative play going on in our house this weekend. It was so much fun to watch! Elijah had an elaborate set-up in our living room and kitchen where his trains would travel to different places (movie store, home, Dairy Queen and car wash, to name a few). Then he would walk outside and pretend to check out a movie. The whole time he would be talking to himself like there were people there. Ummm, like mother like son? I was the queen of imaginary friends at his age!

After I took some photos of a roast I made yesterday, Elijah asked me to come over and photograph the meat that he had just prepared..

And one last thing because this post is getting way too long. Elijah has suddenly started asking me to do baby things with him. He will bring me his glass of milk and ask me to feed it to "Baby Elijah." Or, he will get Sam's playmat out of the closet and lay on it. He is most definitely aware of the attention Sam needs right now!

Sunday, November 7, 2010

Saturday, November 6, 2010

Hello, can of worms!

There are some things I can let go and some things I cannot. When it comes to the little boy I have fought for with my entire heart, I tend to not let things go. Sooo..

We absolutely do not use Elijah's heart defects as a crutch! And, I made the "school for CHD children" comment in very much a joking manner. Like, hey, wouldn't it make the lives of us CHD parents so much easier? Like it's all about us parents, right? Ha!

Receiving true understanding from the important people in Elijah's life (teachers/therapists/caregivers) is supremely important to us at this point in our CHD journey. We enlighten all of the pertinent people about his medical history because ultimately it helps them to better help him. And hopefully that means he will get caught up with the rest of his peers more quickly.

Trust me, I want my awesome little boy to live the most "normal" life possible. That is why I fight so hard for him NOW.

Here, little wormies, crawl back into the can so I can put the lid tightly back on.

Friday, November 5, 2010

Foot in mouth disease

I discovered today that people from Elijah's school have been reading our blog this week, which bums me out a little bit. I never intended for certain people to see what I wrote here, although I do realize that this blog is fair game to anyone who has access to a computer. I truly do adore Elijah's teachers and therapists and think they do an amazing job with him. And I actually take most of the responsibility for the drama that occurred this week. Dan and I should have provided everyone with Elijah's detailed medical history BEFORE school started. Anyway, I certainly hope no harm was done. I am just a mama who has poured my entire SOUL into loving and protecting my awesome little boy(s) and I only want the very best for him.

Enough about that!

Our Dan-less weekend has begun! Having him home next weekend is going to seem surreal. We won't know what to do with ourselves! I cannot fathom it after such a long spring/summer/fall of hardly getting to see him at all on the weekends.

Sammy has a tiny bit of a cold, which I am praying stays TINY. One of the things that makes me a tad nervous about having the boys alone overnight is Elijah's croup. The thought of dealing with that by myself makes me a little crazy. So that's something else I have been saying prayers for. NO CROUP!

That's about all for now. I'm trying to decide between a glass of wine and a bath or a movie. Hmmmm, decisions.

Will she ever be done talking about IEPs?

Based on some of the comments I received on my last post, I have to say a few tiny things. First of all, I got the vibe during the IEP meeting that a handful of people in the room thought Dan and I were slacker parents. Dan got the same feeling, so I wasn't alone. And now that I have had a conversation with Elijah's teacher, I know that our instincts were likely fairly accurate.

Also, I understand that it is required for teachers to compare each child to "typical children of the same age" in IEPs. What I did not understand was why it had to be stated quite so harshly, especially for a child with such a mottled medical past.

With that off my chest..

I both emailed and spoke with Elijah's teacher since my meltdown. I shared with her how extensive Elijah's medical history was and also that I thought some of the statements in his IEP were unnecessary due to his history. She had NO IDEA the extent of his history and thanked me more than once for providing the insight. She admitted that they got caught up in all of his many delays, compiled with lack of self-help, and didn't see the full picture.

She completely rewrote his IEP, which was extremely nice of her to do. And this really isn't what matters to me. It matters that the adults who care for him at school understand his history and the reason for his many delays. And now that they do, I feel much better. She told me that she has never had a student who has had so many surgeries and hospitalizations. I told her that we assumed there were a lot of children in the special education program with similar histories. So, it was good to clear that up!

I feel heard and I no longer feel judged or like people are believing me to be an inadequate parent. And I now know that Elijah is in very good hands. His teacher showed me that she genuinely cares about him and that brings me immense comfort.

Thursday, November 4, 2010

IEP aftermath: tears

Last night, as I waited for my popcorn to finish popping in the microwave, I started thoroughly reading through Elijah's IEP report which I apparently should have done 48 hours previous to that. Within seconds I was crying.

Let me first say that we truly believe Elijah's teachers and therapists have his best interest in mind. I just don't think they understand the extent of what he has been through, and maybe that is something we should be making more clear to them.

I bolded the parts of the IEP report that caused my eyelids to suffer from major puffiness today..

"Elijah readily enters his classroom and greets teachers. This skill is not observed with peers at this time, even with prompts or assistance. Elijah does not appear bothered by peers but does not readily seek them out or attempt to converse with them. At the time, full support is needed to engage with peers and to sustain any back and forth play, as well as, to share materials with peers. Elijah is able to parallel play next to peers, and at times, will watch his peers play. Not a lot of imitation play has been observed to date. Children Elijah's age should be able to initiate, respond to, and maintain interactions with adults and peers without support for at least short periods of time. Elijah will engage in back and forth play with an adult and has been able to maintain a very short conversation with adults in the room. Conversations with peers has not been observed while at school, even with assistance. This is a skill children his age should be able to do."

"Elijah is showing enjoyment when he enters the classroom. He often needs adult assistance to find an activity to do once he arrives in the classroom. Elijah appears to need time to look at everything in the classroom, but often needs an adult prompt to really do something other than watching his peers. Given his age, one would expect that he should be able to complete this task independently. In addition, classroom staff are not currently observing a lot of functional use of play with common object/toys for a child his age without adult support. Elijah is often observed to play with doors on toys and roll objects in front of his eyes unless assisted by an adult. He is able to transition from activity to activity given extra time. It is not clear whether Elijah truly needs extra processing time with directions or is distracted by the movement of his peers, but it consistently takes him extra time to transition that is not related to his physical abilities. This is also observed with small group activities. Elijah often needs extra time or or prompts from an adult to complete table top activities, especially when there is more than one step involved. Elijah also needs frequent cues to use a louder voice volume during classroom activities, so that he can be heard. Elijah is beginning to show some independence with self care skills. He often needs prompting to try as he tends to wait for an adult to just help him with dressing/undressing. Physically he is able to take off and put on his own coat, and is beginning to take care of his pants (pulling up/down) when toiletting, but he consistently needs extra time to complete the tasks. Elijah is not yet fully toilet trained, however, he is in the process and is having some success at school with this task. Most children who are Elijah's age are independent with the self care tasks expected for school (toilet trained, put on/take off coat..)."

After reading through this, I have to think that whoever wrote this up just does not truly understand what our little boy has endured. If they did understand, they would not be expecting Elijah to be able to be on the same level as his peers.

As I wrote in an email to Elijah's teacher, Elijah is absolutely not going to be on the same level as his peers at this point. He didn't move for the first fourteen months of his life due to lack of energy. He didn't walk until he was three. He didn't talk until he was two-and-a-half. Because of his weak immune system and constant sickness, he spent the first 2+ years of his life around very few children. And because of all of the people who have hurt him (doctors and nurses), it takes him a very long time to form trusting relationships.

If I had read through this IEP report not ever having met Elijah or Dan or myself, I would not draw up a very positive picture in my head of who we are. This report draws a skewed picture of Elijah and I think it makes Dan and me seem like pretty slackerish parents.

Which brings me to the potty training issue. If Elijah is in kindergarten and he is still wearing diapers and has no medical reason to be wearing them, feel free to judge me then. But at the age of three and with his extensive medical history? Do not imply that we should have him potty trained. Thank you.

One comforting thing is that I received two separated emails from fellow heart moms following my original IEP post. They both shared that they have endured similar reports and emotions surrounding recent IEP meetings. We are not alone!

Wouldn't it be wonderful if there were a school for only CHD survivors?

Monday, November 1, 2010


Dan and I sat in on Elijah's IEP meeting yesterday afternoon. His teachers and therapists have completely changed his goals, which is actually a really great thing. It means he has exceeded all of his previously set goals, which mostly revolved around speech and gross motor.

One concern his teacher has is that since Elijah is so very smart, it just doesn't make sense that she has to tell him something two or three times to get him to follow a directive. She says he doesn't appear to understand, but how could he not? He understands everything else.

We deal with the same thing at home. It takes us saying his name a few times and then making eye contact and telling him what needs to be done in order for him to do it. Distraction and a busy brain are my guesses.

The new goals that have been set for Elijah mostly revolve around social issues. Honestly, I think it's great that his goals have changed so greatly since April. The fact that our biggest hurdle now revolves around social skills is wonderful! That means tons of progress has been made in the "important" areas.

But it still isn't fun to hear that your son has social issues. Elijah is soooo incredibly social with adults, but he has zero desire to be social with children. His teacher said that he will enter the classroom in the morning and immediately start looking for an adult to interact with. When directed toward other children, he isn't opposed to them but he doesn't seem particularly interested and he never initiates conversation or play with them. He would rather either be alone or hang out with a grown-up. This is an area they are really going to push him in, and I am very happy about that.

The only child he has ever had true interaction with is his little friend Paige from daycare, and he has known her for two years. It took him a really long time to get to the point where he willingly was a part of genuine interaction with her.

They really stressed the importance of catching up in this area, so they want him to start going to school five days a week instead of three. Dan and I feel fine with that, so we will start this on November 17th.

They also set some new goals within the realm of adaptive and functional skills. He has a hard time putting clothes on and taking them off, although he is getting much better with this. He still is not potty trained and honestly appears to not understand the concept still, both at school and at home. Thankfully, they willingly work with him in that area, too.

He does still go to speech while at school and he still has a physical therapist to help continue to build core strength. He can by no means keep up with the rest of his class and he tires easily. They really seem to look out for him and they are open to doing anything that will help him out. I brought up his gravitational insecurity issues and now his PT seems to have a much better understanding about how much to push (and not push) him.

His teacher told us yesterday that usually she reads through each child's paperwork once and that is all that is needed. She has read through Elijah's paperwork six times and still cannot fully figure him out. I wanted to tell her there may not be anything to figure out. He has been through a lot and he is just our awesomely unique little boy. I didn't say that, though, because it would have been followed by tears.

Anyway, we are truly thankful for the care and attention he receives while at school. It has been unbelievably positive for him in all areas.

Before we left the meeting, his teacher showed us a sheet of paper where she had tested Elijah on every letter, upper and lowercase, every number, every shape and every color. He had gotten every single thing correct. I looked at the paper like, Yeah? I think she expected us to gasp in disbelief, but we know how sharp his brain is. Who does she think gets to hear him talk about pentagons having five sides and blue and red making purple?