Heart cath aftermath

We are home. It was a weird, long day, and we are grateful to be back in the comfort of our home. We completely expected to spend the night in the hospital tonight, so we are extra happy to be here.

Here is a photo of Elijah literally just before I told him that the nurses needed to draw his blood. He was having such a good time driving around the unit in his fire truck, so the mood changed quickly once he started anticipating pain.



Dr. G showed us some detailed photos of Elijah's heart and lungs today. He reminded us that Elijah's lungs and arteries are far from normal, which is the reason he needs caths so often. Those little pulmonary arteries of his are constantly changing, and not necessarily in good ways. Stenting, ballooning and coiling will be a part of his life for a long time to come.

We did learn two very positive things today! Dr. G shared with us that since Elijah has only one kidney, that he has peeked at his functioning kidney during every single one of his eight heart caths. I appreciate this! I have never known about this before, which is a good thing, because we learned that his kidney has always appeared to be slightly large in relation to his body size. But today his kidney appeared to be a completely normal size! He also checked the function of the kidney and it was completely normal. We love Dr. G!

The other positive thing we learned was that the catheter insertion sites in E's groin on the right side still look great and are still functional. It is common for a child who has had as many caths as Elijah to have non-functioning sites due to overuse. He is very lucky in this area, especially since he will need many more heart caths.



Elijah had two popsicles (one orange and one grape!) before we left the hospital. He also had a handful of crackers and some juice.



On the drive home, he threw it all up in the car. Twice. At least it smelled fruity! :) His tummy obviously wasn't feeling great, so we got him home and cleaned him (and the car) up. He was acting VERY tired, so we put him right to bed. We are praying for a healing and very restful night of sleep tonight!

Sammy spent the day with Auntie Christine and his cousins. He seems to have had a great time! He was a ball of energy tonight, running around, stealing cookies from the pantry and swiping his brother's tired face.

We appreciate the prayers today! Thank you all so much!

Wrapping up heart cath #8

Elijah did great today! Dr. G ballooned three different parts of his pulmonary arteries, and was pleased with the outcome. He considered adding a stent to his left pulmonary artery, but it would have been in a weird spot so decided to balloon instead.

E's valve is functioning perfectly (yay!) and his pressures are good. We will need to go back to see Dr. G in 4 months, and probably have another cath in a year.

The anesthesiologist took some croup precautions, so his post-extubation croup was pretty mild. He got an epi neb and after that he sounded a ton better. He threw up about 30 minutes into recovery, so the nurse gave him anti-nauseau medication. He seems to be feeling much better now! He just gobbled down an orange popsicle and is playing on his little computer while watching Cars 2.

If all continues to go well, he can get up and walk around at 6:30 and go home at 7:00! We were fully prepared to spend the night here tonight, so this is a nice little surprise.

Dr. G had only positive things to say about today. We are very pleased with how everything went and of course we are extremely proud of our brave boy. This morning he had to get his blood drawn before heading back to the cath lab and it was TERRIBLE. I have never seen him scream and protest so much. It was heart-wrenching. He repeated the following string of words over and over until the ordeal was finished: NEVER! PLEASE HELP! DON'T DO THIS! STOP! NO! All while trying to wrap his arms around my neck. Ugh. That was tough. And he didn't even feel the poke! They used a nifty little thing called a j-tip to completely numb the area before inserting the needle. Hopefully next time he will remember that it doesn't even hurt.

I'm off to sit with my boy. We are all excited that we get to go home tonight!

Bye-bye beach, hello cath lab

I adore California. Only in CA can you be at the beach, the mountains and the desert all in the same day. I had such a relaxing and fun vacation with my female in-laws. I am a very lucky girl to have married into such a wonderful family. I'm also thankful that they have welcomed me with such open arms!

We got back into town last night, er, early this morning, and I couldn't keep myself from waking up Elijah and smooching on him. He doesn't have a hard time falling back asleep (Sammy does), so that's why I woke him and no one else. :)



I got some much-adored and much-needed time with my monkeys today. I felt like both of them had grown so much in the five days I was gone! Sammy is speaking much more clearly now, and the boys are interacting much more (not necessarily in a good way). After being in my bedroom for a minute this afternoon, I came into the bathroom to find both boys trying to fit under the sink.

Here is one of my favorite photos from the trip of me and Dan's sisters and mom. I love this one!



And a huge bonus from the trip was seeing MY mother! Our time together was short, but we made the most of it. I love her and miss her, and I was thankful to have a little bit of time with her.



This was the view from the beach house we rented. Not bad!



And tomorrow we head to the hospital with Elijah. He will be having his 8th heart cath with Dr. G. All of those familiar emotions come flooding back when I allow them in. Fear, sadness, pride and on and on. E is the second case of the day, so we have a start time of 11:30. That means we have a morning of no food or drink. Sammy will be staying with an auntie, so he will be in good hands. Dan and I will be with our oldest boy, giving him our utmost love and support.



As far as we know, Dr. G will be doing diagnostics unless he finds that any "work" needs to be done. We will keep Facebook and this blog posted, as well, tomorrow. Thanks for checking in! Please pray for a smooth day tomorrow and for good news!

OT, PT and colored eggs

The boys had fun coloring Easter eggs this year, although we had a few casualties. Sammy did great with the wax coloring. He is a determined and focused boy.



Holidays are more enjoyable the older the boys get. I love seeing their happy faces!







Sammy thought it was funny to wear his cousin Veda's purse on his head. He can be quite the silly boy.







Elijah had his third OT session today and his OT already loves him to pieces. She started "working" his vestibular system, which I think is great. She gently encouraged him to ride on the tire swing today, and that is a huge accomplishment. He was uncomfortable, but pushed himself. Progress! She also worked with him on his finger/hand strength.



His OT and PT are putting together their summer schedules, so today his OT said, "Ooohhh how I hope I can work with him this summer. I love him!!"



E's PT told me tonight that she was encouraging him to run back and forth between two points. She told him, "Hurry! I'm going to count to ten!" Elijah frantically turned around and said to her, "NO! DON'T DO IT! NO COUNTING, VICKI!" Sooo....yeah....that would be our fault. We do counting at home a lot and IT WORKS. The kid hates it when we start counting. It is one of the only things (along with the Wii) that encourages him to accomplish tasks.



I need to post videos of Sammy because he is so incredibly cute lately. Sassy and cute, that is! He has a funny little personality. We love our Sammy! We love our boys!

Thanks for checking in! Have a great week!

Easter weekend

These photos are about a month old, but they are the only ones I have to share! Sammy loves to sit at Elijah's computer and pretend like he's playing games like his brother does.





Elijah has been a little bit sick for the past couple days. He acquired a mysterious rash that turned out to be a possible virus? We weren't sure, but Zyrtec wiped it out almost immediately. He has had a bit of a cough for the past few days, but has otherwise has been his spunky self. I hate to even put this in writing for fear of jinxing anything, but potty issues have improved a bit. We still have accidents, but he CAN keep his pants dry all day if we stay on top of asking him to go to the bathroom. He still does not EVER tell us when he has to go, so if we let too much time pass he will go in his pants. Baby steps!

And his behavior has gotten better, too. For about a week straight he wasn't able to play the Wii because of his "bad" words. We have not heard CWAP in almost a week! I think he is finally figuring out that C-word equals no Wii! I have been using the Wii as a tool to get him dressed and pottied in a timely manner in the mornings, which is working great. I can't even tell you how wonderful life is on the mornings when there isn't any whining or complaining!

We have Elijah's kindergarten round-up this week! We are excited to see his school and meet his teacher and new friends. Our big boy is growing up!

Sammy is sooo stinkin' funny lately. He has started putting 2-word phrases together, which is fun. When we walk outside to get in the car he says, "Mama dar?!" (Mama's car) and when we are getting ready to leave the house he says, "Goat on?!" (coat on). When we see a truck on the road he says, "Bee vru!" (big truck) and when we pull out of our driveway he says, "Bye bye, mome!" (bye-bye, home). He is a smart little boy! He can follow multi-step commands, which seems just crazy to us. He has a very strong little will, especially about certain things, but he can also be such a VERY laid back and totally chill little person.

Elijah and Sammy have shown signs of actually enjoying one another in the past few days. It is nice to see those rare moments when they interact positively. Of course we have plenty of the other kinds of moments, too.

I am leaving for California on Thursday morning for five days, so the beginning part of this week is going to be busy. I hate the thought of being away from my boys for that long, but it will be a very fun trip. Dan's sisters and I are taking his mom on a girls' trip! I can't wait to be on the beach, enjoying the California sunshine. I also get to see my mama!

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

OT eval

I wanted to write down a few details from Elijah's occupational therapy evaluation. He has already been to three OT sessions, and he is doing GREAT! His OT (who is wonderful!) has commented on what a "happy and cooperative" little boy he is. I invited her to come home with us for an evening! :)

One of the main focal points will be his fine motor skills. His hands and fingers are weak, which makes it difficult for him to do things like zip zippers and button pants.

The part that I found really interesting was Elijah's Sensory Profile, which is a "standard method for measuring a child's sensory processing abilities and profiles the effect of sensory processing on functional performance in the daily life of a child." I will list the areas that Elijah scored low in:

Vestibular Processing
Sensory Processing Related to Endurance/Tone
Behavioral Outcomes of Sensory Processing
Emotionally Reactive
Low Endurance/Tone
Sensory Sensitivity

All of that is spot on. I have to paste a little excerpt from the report because these very things are things I have been telling you all about for years (it somehow feels good to have professional validation):

"Elijah demonstrates a significant difference in the area of vestibular processing and is very gravitationally insecure. He became extremely anxious when his feet were lifted off the ground. He refused to tip his head back when off the ground. He demonstrates difficulty with modulation of sensory input related to body position and movement and this affects his emotional responses and is also affecting his motor skills negatively. He is sensory sensitive and often has an exaggerated response to some sensory input in the areas of vestibular, visual and oral sensory. Elijah moves stiffly, locks joints for stability and demonstrates core weakness which could also be impacted by deficits in sensory processing. Elijah hesitates navigating curbs or steps, avoids climbing and jumping and expresses fear of falling and fear of heights."

I think it is so interesting how every piece of development is capable of affecting another piece. Deficits in one area can affect many other things! Elijah was approved to receive OT, in addition to PT, once/week for the next year. We are extremely thankful that we have so many wonderful and smart people looking out for our boy.

I feel like it's only fair that I mention the GOOD things from the report, as well! Most of the areas he was tested in he did great at. All forms of processing (aside from vestibular) were well within the normal range, and his social and attention skills tested great, too. Considering his medical history, he is doing better than we ever could have expected. We are so proud of our boy, who now goes down the BIG SLIDE AT THE PARK all by himself and without any fear! Every little thing means so much. We appreciate every bit of progress, and every little thing.

Spring Break comes to a close

Spring Break week has been mostly good! You know, aside from all of the potty issues. We were able to get out and do a few fun things this week. Elijah's favorite outing (by far) was going to the "Mall at the 'Merica." We rode on the rides and checked out the Sea Life exhibit. Elijah even rode on his first (small) roller coaster! He was VERY proud of himself, and I must say that I was pretty proud, too. It is indescribable to explain how happy it makes me to see Elijah enjoy himself so much on outings like that one (Sammy someday, too). I love that happy little face so much!



Sammy was very indifferent about the entire MOA experience. He has to FULLY absorb his surroundings before enjoying himself, so a place like The Mall is not the most comfortable place for him.



Dan and I have been feeling very tired and run down, so we are starting a healthier diet and schedule tomorrow. April will be our turn-around month! It is ridiculous how tired we always feel.



I won't say anything further on the potty issues. Things are the same there, and still quite frustrating.



We are excited to get Elijah back in school this week. Life is so much happier for all of us when he has that time with friends in the mornings.



The weather tomorrow is supposed to be phenomenal, so we are looking forward to enjoying that!



I will go over Elijah's OT report sometime in the next few days. It was interesting to read, and it has gotten my wheels turning. We are constantly being reminded lately what a special, awesome little boy he is! Sammy, too, of course! We love our boys!



Good night! More later!

Operation toileting: FAILING

On occasion, a nap is still necessary for this 5-year-old.



It's probably not a good day to be writing a post because Dan and I are at our wit's end regarding the potty situation. It is BEYOND FRUSTRATING. We honestly do not know what to do at this point. We have tried everything. We have even tried not doing anything. Do we continue to wait it out? He was interested in putting check-marks on a potty chart the other day for about 3 hours. Then that was over with. In the toileting realm, he is currently acting like a 2-year-old who is just starting to potty train. Tons of wet underwear, not to mention the poop we deal with multiple times a day. It is very very frustrating. Right now I feel like he will not be able to attend kindergarten. I feel like this will never happen! I feel totally defeated.

I wanted to share some of the excerpts from Elijah's recent OT evaluation report, but perhaps another day. For now I have to go clean up poop and pee and everything in between.

Blibber

Another Elijah funny to report!

Whenever he gets something spicy in his mouth (pepperoni, for example), he says, "My tongue is uh-blibber-uh-blum!"

Funny Elijah

I have to get this down before I forget it. Tonight on the way to the grocery store Elijah asked Dan if he would please roll his window down for him. Dan complied and Elijah said, "Thanks, young pal!" :)

Random doings and sayings

I love this photo of the boys snuggling, despite Elijah looking quite wiped out.



Sammy loves his new orange Crocs that I got for him in Colorado. He wants to be wearing them constantly. If one happens to fall off, he yells, GOCK! GOCK! GOCK! until we put it back on.

Elijah has always had little quirks and unique sensitivities. Since he was a tiny baby he has absolutely hated the sun shining in his face while riding in the car. He still hates it. So every time the sun is shining in his face, which happens often because that's what suns do, we get to hear, THE SUN IS SHOOTING ME! (Repeat until the sun is no longer "shooting" him.) Just recently he has been extra sensitive to wind, as well. If we are walking outside when it is windy, he says, THE WIND IS BLOWING ME AWAY! (Again, repeat until the wind has stopped blowing him away.) No drama or anything!

That leads nicely into this topic. We have decided to put Elijah into occupational therapy, as well as physical therapy. We are hoping that will help him with some of his fine motor skill delays and also self-care and some sensory issues that still linger from when he was a baby. He will hopefully start that next Monday. I hear that his new OT has all sorts of activities lined up for him!

Lately Elijah has been asking me about his scars. He points to his big one and asks what Dr. Moga did. I explain that he had to cut an incision to get into his heart, and he seems to understand that. Then he points to his chest tube scars and asks where they came from. Those are a little more difficult to explain, but we are honest about why they are there. We have talked a little bit about his upcoming heart cath, and he seems to know what to expect.

The boys have a game they play with me lately that makes us all giggle. When I ask for a kiss or a hug they will say, "NOOOO!" and laugh and run away. I chase them and say, "You can't deny Mama Kisses!" Once I get my hands on them they get assaulted with Mama's kisses! Thankfully they both love getting smooched by Mama.

The potty troubles are still present. I would say there is a teeny improvement in that arena. Just teeny. At least now we see him trying to hold it instead of just going wherever and whenever. We do still have our share of accidents, though. And we still get sassed when we ask him to go. Overall, the sassing has made slight improvements, as well. Dan and I have stuck to our guns and have not backed down ONCE with discipline/consequences. He is learning that we aren't tolerating manipulation, which is good!

Sammy has this funny thing that he constantly does where he will take family inventory. MAMA? Yes, I'm Mama. DADA? Daddy is at work. UH-YA-YA? Elijah is at school. Then he will pat the top of his head. (This is a funny thing because he has never once attempted to say his own name. It's always a head-pat when referring to himself.) Yes, you are Sammy. He does this about 900 times per day. Then he will point to his toes (or any body part) and grunt (grunting is his way of saying, "Look!"). Yes, those are Sammy's toes. Then he will point in Dan's direction and grunt. Yes, Daddy has toes. Then he will point at me and grunt. Yep, Mama has toes, too. Then at Elijah. Elijah does indeed have toes. And on and on.

My favorite recent word of Sammy's is his word for JAMMIES. He calls them BEEZ-BEEZ. :) He has also been saying a string of nonsense words that never fails to make Elijah and I laugh. It sounds like blub-blub-blub-blub-blub-BOP!

Last weekend Elijah got to spend a night with Auntie Lissa and Uncle Dan and two of his cousins! He adores Auntie Lissa's house, and he had a blast with them, as usual. I love this photo of him and his cousin (and puppy) sleeping. Sshhh, please don't tell Emma I posted this!



And he even got to ride the lawn mower with Uncle Dan!



Elijah woke up this morning with a tiny cough and runny nose, so we will be on croup alert tonight. Other than that, and our boys' silly antics, not much is going on with us. We have been outside a lot, enjoying this beautiful Minnesota weather! Which reminds me, happy spring! Thanks for checking in.

Parent-teacher conference

Dan and I had a parent-teacher conference with Elijah's teacher today. It went really well!

His awesomely wonderful teacher said the following:

- Elijah is one of the most consistent kids in the class. He is happy and predictable and cooperative. (Goodness, I wish we could say this about him at home!)

- He has come such a very long way in his development. He is still behind in social, gross motor and fine motor skills, but not by much. When comparing him to where he was at one year ago, it is pretty amazing to think about! He has made tremendous strides.

- Intellectually/academically, he is ahead of where most kindergarten teachers want their students to be at the end of the kindergarten year. He picks up on reading and math and patterns and everything else very quickly.

Elijah is a special little boy. It takes a unique combination of grace and nurturing and structure to make him the happiest, most effective person he can be. His teacher told us today that she was a little bit concerned. If Elijah doesn't receive the perfect combination of qualities in a kindergarten teacher, he could fail. Thankfully, as always, he has the absolute best people looking out for him, so his preschool teacher is going to request that very thing for him. We are going to try to get him the most structured yet nurturing kindergarten teacher possible.

E's teacher thinks that he will need a "special" label of some sort because of his developmental delays (due a lot to all of his medical needs). Because of this, he will likely need to be pulled out of his class for at least speech services, and possibly more? She said to us that Elijah has some autistic tendencies, but that he is not autistic. I have ALWAYS thought this exact thing about him! There are so many things that he does that would qualify him as an autistic kid, but he just isn't.

We have been very blessed with the teachers and doctors who have cared for him. We continue to pray for the same from here on out. I have honestly prayed for his kindergarten teacher since he was born!

Great friends

Elijah and Paigey have been in daycare together since they were babies. They have a sweet little bond and friendship that is very special. She is an amazingly sweet and smart little girl.

We were so happy to have her over to our house last weekend. Sammy loved it, too. He loved playing chase with Paige. Here is Sam in action!



We are so thankful for great friends!

Sleepin' Elijah

Impromptu nap on the living room floor at 5 months old..



Impromptu nap on the living room floor at 5 years old..

Spring is springing!

Today was an awesome day! The gorgeous weather did wonders for our spirits. We took a family trip to the park for the first time in months, and it felt amazing. We have had such an incredibly lovely winter, but the promise of spring always feels so nice.



A quick Elijah funny before I forget.. Instead of saying "yesterday," he says, "last year." So, conversations like this one occur regularly:
"Mom, last year I drew a penguin at school."
"Do you mean 'yesterday'?"
"No! Last year!"
"Oh, ok."



Today Elijah had his good friend Paigey over for a play date. My camera is 10 feet away (way too far to retrieve), so I will upload pics from the day tomorrow. They had such a good time playing together! It is cute to hear them talking when they don't think we are listening. I love that they have basically grown up together at daycare and know each other so well. At one point we were talking about favorite colors, and I asked Elijah what Paige's favorite color was. He said, "Mom! It's pink and purple!" So cute. When her dad came to pick her up, Elijah immediately started saying, "I want Paigey to come back!"



Sammy Jammy is just as cute and snuggly as ever. He is definitely in a sassy little phase right now, but he is still the sweetest little guy. He takes his brother's "abuse" in stride and loves all of us so much. He has been saying so many new words lately, too. He has started saying BYE-BYE and HOME and HI and many other cute things. He is still so particular about certain things, like which books he will allow us to read to him and where and when and what food will be served to him. He is constantly rooting through our pantry for snacks throughout the day, which obviously affects his meals. We've had to start telling him NO, which doesn't go over very well.



Elijah's behavior has been a bit off the charts for the past few weeks, which caused Dan and I to have an Elijah Behavior Conference last night. We came up with a solid plan and implemented it today. Elijah did NOT like it, but we loved it. It was a lot more work for us up-front, but at the end of the day we were so much less stressed. He is such a smart boy and he has a very strategic little mind, so we need to constantly be thinking ahead of him. One of the things we have decided to do is completely ignore his "bad" words. He 100% uses them as a tool to get under our skin, so we refuse to allow that anymore. A couple different times today he spewed a string of CR*Ps, and we acted like we didn't hear him. He started looking around like, HEY! Listen to me! We are hoping and praying for a change for the better in his behavior, all around.

That is all for now! Tomorrow is supposed to bring beautiful weather, as well, so we are hoping to get out of the house again and enjoy it. Thanks for checking in on us! Have a great rest of your weekend!

Back home

This photo makes me laugh. Dan caught the glasses-grab mid-swipe! You can use your imagination about what string of words followed this moment.



I got home from my little Denver trip yesterday morning, and within 3 minutes I realized what a total freak I am. I have been so good at taking care of our house lately that the first things I noticed upon entering were the things that weren't EXACTLY how I would have left them. So I started frantically cleaning. Once I realized how ridiculous I was being, I stopped myself and looked around. Dan had cleaned things up quite nicely! I'm such a freak! I made myself stop.

Jess and and I had a fun time in Denver. We spent a ton of time walking around and exploring the downtown area of the city. We also did a lot of eating, and had some extremely delicious meals. We somehow got upgraded to a suite for the price of a standard room, so this is what the living room portion looked like!



We had to stop and get a photo with the over-sized cow. It was super windy the first two days we were there.



We both loved the Denver Art Museum! The city was filled with great art.



We even made it up to Boulder for a day to explore outside of Denver. It was gorgeous! I love the mountains.



It was very nice to get away for a few days, but I was so insanely excited to come home and see my monkeys. It seems as though things carried on just fine while I was away. Sammy didn't even give me his usual post-absence cold shoulder, which was a nice surprise.

Now we are back to our usual routine, which still does not seem like much of a routine. The boys sure keep me busy (and tired)! Sammy has turned up the sass in the past few weeks, so there can definitely be stressful times in our house. It's all worth it, though. These are the times I will miss one day! I love these monkeys to pieces.

Thanks for checking in! Have a great week!

Breaking news!

Every morning is a struggle here in the Porta home. Getting Elijah to go potty and put on his pants and coat and boots...OHMYGOODNESS, it is entirely too much for that boy. This morning I was in the bathroom getting ready and Elijah said, "Mom, I go get dressed." Hmmm, ok. I didn't think much more of it. Then Sammy started knocking on their bedroom door because he HATES it when Elijah shuts him out of a room. I went to investigate and opened the door...

Do you know what I found??

Elijah had dressed himself! COMPLETELY! We didn't even know that he could put his own shirt on! He had put on: underpants, pants and two shirts. WHAT?! I danced like a crazy woman!

And then he went downstairs and put on his boots and coat and hat and mittens without complaint. Has something in the world shifted?! What is going on?

We rewarded this behavior, of course, and brought the boys to Culver's for dinner tonight. Elijah had received a Free Ice Cream token from school, so he had been looking forward to redeeming that. We are hoping the agreeable-dressing trend continues, or at least happens on occasion.

I am off to Denver tomorrow for a few days! I am feeling torn about the trip. I am excited, but I always hate leaving my boys. I know they will all take care of each other. It will be good for all of us! Perhaps you will see a post from them while I'm gone. :)

Thanks for checking in on our family!