Monday, March 28, 2011

Food, busy-ness and muscles

Sammy is starting to explore the world of real food. He loves everything we have offered him so far. Strawberries, bananas, turkey, cheese, peas, pasta, pancakes. Dirt from the floor.

He is a crawling machine! He is into everything and it's so awesome to watch him explore. His favorite place to crawl is wherever his brother is playing. That's when we hear, "NO, SAMMY. NO TAKING MINE TOY. NO LOOKING AT ME, SAMMY." And that's when Elijah gets the be-nice-to-Sammy talk. Again.

Elijah asked me to take a picture of him flexing his muscles. :)

We had such a nice weekend filled with together-time. Dan will soon no longer be around on weekends, so when I'm not feeling sorry for myself about that I'm trying to soak it all in.

That's about all we know! We're hoping for a few quiet weeks before the medical stuff begins. Thanks for checking in!

Thursday, March 24, 2011

A gentle doctor

My prayers were answered yesterday. Dr. S, Elijah's ENT doctor, was very gentle. After chatting with us for a few minutes, he said what I expected him to say. We need to get Elijah in for a bronchoscopy-laryngoscopy before his open heart surgery. If there is something serious going on with his airway, we will need to know about it before then. I am doing my best not to think too far ahead.

I envision the next four months to be a gigantic pyramid holding many steps. Climbing the steps is not going to be easy, or fun, but most definitely necessary. And we will have to take the steps one at a time, and try not to worry about how out of breath we will be in the upper quadrant.

Of course there can't be an appointment without an Elijah Funny, right? We were chatting with Dr. S and he asked who E's cardiologist and primary docs were. We told him their names and he gushed about both of them. He said, "Elijah is in THE BEST hands, honestly. You just cannot beat those two doctors. Not possible." We agreed with him and told him how much we love them both. Then Dr. S said jokingly, "Now, Elijah's ENT doctor on the other haaaand..." And right on cue, without missing a beat and as if he totally got the joke but didn't really think it was funny, Elijah let out this HAhahahaha super fakey laugh. It was great.

The final word from Dr. S was that he is concerned. Elijah's tendency to get severe croup post-extubation is a serious situation. But, like Dr. S said, he is in good hands. The best. We are taking the necessary steps to keep our boy safe and that is all we can do. We have an appointment with Dr. K, Elijah's pulmonologist, in a few weeks, so we will get his thoughts, as well. Add Dr. K to that list of the absolute best doctors, by the way.

I have a hunch about all of this. I don't feel like Dr. S will find anything serious in Elijah's airway. I feel like it will be slightly narrowed, possibly due to scar tissue from all of his intubations, but I don't feel like it will require intervention at this point. When Elijah gets out of breath, he doesn't wheeze or struggle beyond what he should. He never sounds croupy unless he is sick or unless he has been intubated. That is a very good sign.

His bronchoscopy-laryngoscopy is scheduled for May 2nd. So, within the next month or so we should have a better handle on the croup worries surrounding Elijah's upcoming surgery.

One step at a time!

Surgery date set!

The scheduling department called today. My heart sunk to my toes. I set my calendar in front of me and flipped it to June. The first date she suggested was June 15th. I looked at June 15th on the calendar and it just didn't feel right. But I said, "Sure, that works." Then she said, "Wait a second, would you want to have it done on the 10th? Because Dr. Gremmels will be 'on service' that entire week (meaning, he'll be at the hospital basically all the time, even through the weekend)." Having Dr. G close at hand during those first few days following surgery will be invaluable to us. His presence is calming and reassuring and comforting. I looked at June 10th on my calendar. It's my sister-in-law Christine's birthday. If you have been reading this blog for a long time, you know that Elijah's surgery dates have often coincided with other significant days. Maybe that's why June 15th didn't seem right to me. There was nothing otherwise significant about it. I knew right away that June 10th was our day. Plus, just seeing Christine's name while thinking about Elijah's surgery calmed me since she is the kindest, most caring and loving person on the planet. June 10th it is!

I'll write more tonight about yesterday's ENT appointment!

Tuesday, March 22, 2011

Clean teeth

I took Elijah to the dentist yesterday for a cleaning. I saw signs of anxiety starting to brew when we got there, but thankfully the most caring human being on planet Earth cleaned his teeth. He wanted to touch and explore EVERY instrument that was going into his mouth before it went into his mouth. And she was super patient and understanding about that. Before we started, I let her know that he recently experienced a traumatic hospital stay and that he was extra anxious. She was awesome with him.

I was so proud of my brave boy! He did great and he trusted me when I told him nobody was going to hurt him. He even sat in the chair alone and he reclined without fighting. This was huge! Being in a submissive position like that is terrifying for him.

His teeth looked great! We have always been diligent about keeping them clean because we certainly don't want to add dental woes to his list. He got a prize and a new toothbrush and a sticker and he was very proud of himself for being such a big boy.

Some funnies.. The first thing he said to the dentist was, "I have twenty teeth!" She looked at me like, WHAT. Then he pointed to the exit sign and said, "That says EXIT!" Ok, Elijah, stop showing off. While he was getting his teeth cleaned, he said some of the cutest things. The lady asked him if he had any brothers or sisters and he said, "Yes, I have one Sammy. He's wittle."

Tomorrow is the big ENT appointment. Dr. S has been known to not be so gentle with us, so I'm praying he's feeling extra compassionate. We could possibly hear scary things tomorrow, which has my tummy in knots. I'm praying for good news and a gentle doctor and a peaceful Elijah.

Sunday, March 20, 2011


My boys and I took a spontaneous vacation this weekend. Our vacation took place ten miles from home, but felt just as vacation-like as if we had been a thousand miles away.

We have a few exciting events to report. Elijah played his little heart out at the waterpark, although I have no photos to prove that.

He also got to sleep in a bunkbed, which made him feel like the biggest big boy in the world.

SAMMY STARTED CRAWLING!!! Aaahhhhhh! Yay Sammy!

Elijah "won" some googly-eye glasses, a plastic bug and a green wristband. He proudly walked around in public with his glasses on, gathering many giggles from many people. :)

Sammy has four, almost five, teeth!

Sammy and Elijah enjoyed a hotel bath together. Elijah asked for "wots and wots of toys," but we had to settle for just a couple.

At one point, Elijah asked what was on his swimsuit and I said, "Colorful fishies!" His response: "Ohhh, that's so beautiful!" :)

We are tired, at home and preparing for another week. I love my wonderful boys.

Friday, March 18, 2011

Tuesday, March 15, 2011

Hungry monster

There's something you must know about Sammy. He is the world's hungriest human. PLEASE CONSTANTLY PUT FOOD INTO MY MOUTH. THANK YOU.

The other night I was trying to make dinner and Sam had already eaten (a lot of) dinner and was hanging out in his exersaucer. He started screaming for more food (again), so I poured a few puffs onto his tray, closed the container and set it on the other side of his saucer. From the kitchen, I heard his MMmmmmmm-ing for a while, and then the hungry screaming started so I assumed he had run out of puffs. Then the MMmmmmm-ing resumed, so I went to investigate and this is what I found.

He found the container, opened it and poured its entire contents onto his tray. That's our Sammy. Stuffing handfuls of food into his mouth.

Is anyone not tired this week? Daylight savings always kills me. Mornings have been rough, but I know soon that will get better. I am waiting to hear from scheduling so we can get Elijah's surgery on the calendar. Next week we meet with ENT to talk about our worries concerning Elijah's constant post-intubation croup. Last time we met with ENT, he was not gentle when talking to us about some potential scary things so you can guess how I'm feeling about the appointment.

Thanks for checking in! Have a good week.

Thursday, March 10, 2011

9-month well check

I can hardly believe that our Sammy is 9 months old already. Sometimes I hold him tight and beg him to please stop growing up. I am savoring his baby stages because they are going so much more quickly than Elijah's baby stages went. Soon he will be running all over the place and I'll want another baby! Ha!

Sammy is sooo close to crawling. Elijah started crawling at 21 months, so 9 months seems insane to me! Sam wants to gets his little hands on EVERYTHING. He will do whatever he needs to do to get to a toy. Scooch, pull, half-crawl, roll, fall. If I leave the room for 20 seconds, I usually come back to see Sam sprawled out over a toy barn, a toy tractor and a pile of toy cars, while chewing on a book and reaching for a puzzle. Nothing ever hurts him. He falls all over the place and never lets out a peep.

Along those same lines, he got a finger-poke at the doctor's office today and he didn't cry or wince one bit. He sat and watched the nurse squeeze and squeeze and squeeze blood from his finger with the sharpest curiosity.

Sammy weighs 22 lbs. 2 oz. (73rd percentile) and he is 29.5 inches tall (85th percentile). All developmental milestones are on track, if not ahead of schedule. I am learning that I am not one of those competitive parents who wants my baby to achieve milestones at the right time just for competition's sake. We know he is healthy, so I just want him to stay a BABY!

The only concern that came from the appointment today is the tiny pink bump on the side of his face. We still have not taken him to see a dermatologist to get it looked at, so now it is on our list of things to do in the near future.

We love our chubby, cute, adventurous Sammy!

Wednesday, March 9, 2011

PT Conference

Dan and I attended Elijah's parent-teacher conference last night. According to his teachers, Elijah has made HUGE strides in every single area since his IEP meeting in November. He is interacting with children more (he still prefers adults, but will at least interact with other kids when prompted now). His play is very appropriate and he will finally play WITH kids when asked. We found out that he has a special little friend named Laura who he adores. I've heard him mention "Woe-wuh" before but it didn't connect that he was saying "Laura." One of the funniest things his teacher told us is that they had to move Elijah's potty chair so it is hidden from the rest of the class. Otherwise, he will sit on it and try to talk to everyone. She said he was even trying to yell over to the kids in the bathroom from his potty chair (he is deathly afraid of toilets, so he has own special chair). He's a super social kid and is always talking, just like at home.

The common theme seems to be DISTRACTABILITY, which I don't believe is even a word but you get the gist. Elijah is very easily distracted and this often makes staying on task difficult for him. At home we notice this the most at mealtimes. We have gotten to the point where we don't allow anything at the table besides the food in front of him. Even after implementing that rule, Dan or I or both of us have to be constantly reminding him to eat. A piece of lettuce will turn into a spaceship and a spaghetti-o will be its passenger, zooming around the sky. Meals can get stressful in our house. There are lots of reminders and sometimes lots of tears. I imagine this is how it probably is at school when tasks are involved (minus the tears).

Overall, it was a great report. He has made huge strides, even just over the past month. They are suggesting that he be a part of the 4-year-old class next year (now he's in the 3- and 4-year-old class). I am so proud of our boy! He has come so far.

Sunday, March 6, 2011

Spring, we long for you

Am I a mean mama for posting this? I had to share it. Can you tell Elijah is working on pulling his own pants back up after going potty?

Sammy had a bit of a cold this weekend, which explains all of the screeching he has been doing. Something hasn't been feeling good for him, but thankfully he seems to be better.

I am closing up the weekend with two injuries. I have a deep muscle pain on my right upper arm from wakeboarding on the Wii. Nice. And a very sore nose/face from getting a headbutt from Sammy.

We got the boys out of the house a couple times this weekend. Elijah finally got a haircut (it was not a pleasant experience). I'm enjoying the new lens I got for my camera. Dan and I made delicious tacos last night. That's about all I've got right now! Besides, typing makes my arm hurt so I'd best rest it.

Tuesday, March 1, 2011

Croup: Season 3, Round 7

Elijah got daytime croup yesterday, which has happened only one other time in his life. We managed it without medication (no racemic epi neb), but we were only able to do this because he now does a great job of REMAINING CALM. Thank you, God! If anything good came from last week's heart cath, it lessened my (and Elijah's) fear of croup. He basically had croup for three straight hours in the hospital and did just fine for most of that time (when he was calm). So yesterday when I heard his croupy breathing, my worry level didn't increase by much. I knew it would be ok and that we could pull out the big guns if we needed to. I could not be more happy that our boy isn't panicking so much anymore!

It took a few hours, and a dose of oral steroids, but by early evening Elijah's breathing was almost completely back to normal. I kept checking on him through the night, but he didn't have another episode. Today he has a bit of a cough and a runny nose, but nothing terrible.

That's what I get for saying that we are all healthy, right?!