Monday, April 30, 2012

More Sammy words

I thought of some more Sammy words today..

"Doo-dah" is "step." I have no idea where this came from, but it's cute! "Bee doo-dah!" is "big step" and "Doo-dah book" is "I stepped on the book."

He is so polite, and always says "please" and "thank you," which sound more like "peace" and "eek-ah."

He is much like his brother in the way that he loves to make people laugh by using nonsense words. A few of his favorites are: "dee-dah-bo," "go-gee" and "vu-fuh." I love when I catch him making Elijah laugh with his silly words.

"Gar-gar" is anything that is too tough to say, such as "helicopter" or "garbage."

"Bah-boo" is "buckle." Buckles are on Sammy's list of Things I Must Do All By Myself Or I Will Scream.

The little boys and I had a good day today! We took a lot of trips to the park, which meant a lot of screaming-off-of-one's-head-and-flopping-around-like-a-slippery-fish when leaving the park. Tomorrow will be more of the same. Elijah has his 3-month follow-up with the opthamologist in the afternoon. Hopefully the weather will stay nice so we can spend some more time outside! Thanks for checking in!

Sunday, April 29, 2012

Blab-blab-blabbing boys

I thought I had photos to share, but I do not. Sorry! It has been a crazy past few days. The boys have been pushing me to my limits! Elijah's behavior has been off the charts, and Sam now likes to do the back-arching and screaming thing any time we leave a fun place. Today was better, though. We got out of the house and I kept the boys active until bedtime.

Sammy's independence has reached new heights. He will not let us help him with ANYTHING. Not even things that he is physically unable to do, such as buckling himself into his car seat or zipping up his coat. If I try to help him with any task, major screaming occurs. And he suddenly has a dislike for socks and wearing his own shoes. My shoes are preferable. This boy has his own ideas!

I wrote down a few things over the course of today that Sammy says. Here are my favorites:

"Boom-bee" is "blueberry" (still his favorite food).
"Deet" is "grape" (his second favorite food and the only thing that keeps him from screaming in the grocery store).
"Beet" is "play-doh" (in his top three favorite activities, along with drawing and playing legos, aka "wee-bos").
"Boo-dair" is "blue chair." We have a blue chair in our living room that he likes to sit in, but now every chair is a blue chair. Any chair he wants to sit on is "boo-dair!"
"Bebe-up!" is "Give me my blankie!" "Bebe" means "blankie" and he loves his blankie more than anything in the world. It must be in the same room with him at all times, or he will start groaning, "BEBE?! BEBE?! BEBE UP?!"
"Eye-faaa" is "My eye itches." He has it in his mind that if something hurts, it has "fallen."
And the best of all.. "I-yo" is "I love you." He says this to all of us, and often. "I-yo, Mama!" "I-yo, uh-YA-YA!"

He loves to giggle a super high-pitched squeal when is really happy, and I love that squeal. Our little Sammy is such a blessing to our family.

Dan is still working hard at getting his AFF rating for skydiving. Say a prayer that he passes in the next few days! Thanks for checking in. The next post will involve photos, I promise!

Thursday, April 26, 2012

Boys boys boys

Hello everyone! It seems like it has been a while since I have posted a "normal" post. First, I want to ask you to please have patience with the appearance of this blog. Blogger is in the process of making changes, so that affects the way the graphics appear. We are trying to get everything looking great again!

These sleepy photos are from a few nights ago when we went to visit Elijah and Sammy's cousins. Elijah likes to sleep in the car and Sammy likes to chill on car rides.

For the past few weeks we have been lucky to have my cousin Trevor stop by our house on his way home from work on occasion. We are happy that our house is on his way home! Last week he brought his beautiful and sweet daughter along with him, so our boys had somebody new to play with. We love having him and Veda here! Please come back soon, guys!! Elijah and Sammy are loving the boat you left here for them to play with!

Elijah has had a VERY good past few weeks behaviorally, EXCEPT for today. We had some major upsetting incidents today, and therefore had no tv, Wii, toys or privileges. I am thankful that Dan was here to help me with everything that went down today. He will be training to help people become licensed skydivers for the next 4-5 days, so the boys and I will be solo! I am praying for continued good behavior from our oldest boy.

Sammy is quite the little talker these days. His speech improves every single day, as long as there are no "strangers" around. He is now saying 3-4-word phrases, and he knows which words make Elijah laugh and which ones make him mad. Depending on the mood, he will get right in his face and say choice words to his brother. Both boys love silly nonsense words, so that is one thing that keeps us all laughing. We hold onto anything that keeps our boys interacting.

After a rough behavior day for Elijah, we also ended the day on a rough note. While the boys were wrestling, Elijah bit Sam's butt so hard that he left a huge bite mark on his left butt cheek! Needless to say, he went to bed very early. Biting butt cheeks?! Ugh. Whatever will be in store for these two??

We are attempting to get Sammy away from sucking his thumb so much. Suggestions, anyone?

Thanks for checking in!

Notice in most of these photos that Elijah is being a ham, Sammy is being shy and Veda is as beautiful as ever! :)

Wednesday, April 18, 2012

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!

Tuesday, April 17, 2012

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!

Monday, April 9, 2012

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!

Sunday, April 8, 2012

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!

Wednesday, April 4, 2012

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.