The newest.

It's been too long.

 

So much can change in the course of a few short weeks.

 

 

Luke is starting to carry on 4-8 word conversations with me. Its so precious. It is so cool to slow down and watch him put the words together. He's getting it. I think he appreciates being able to articulate what he wants instead of screaming and grunting so much. He is growing well, and he has been so much healthier ever since we cut sugar out of the house.

 

Ethan is officially enrolled in kindergarten! I am equally excited and terrified for him. One of the hardest things to do as a Mama, is to knowingly put your children in a situation where they could potentially face big barriers.

Fall.

Get discouraged.

Make mistakes.

 

I know in my heart, that these things build character.. But having a child that has special needs, I feel like I long so much to protect him from those hurts even MORE. Maybe its because I know that he copes differently (sometimes not at all).. Maybe its because I know his heart, this tender-hearted, compassionate, sensitive boy. I know he will stumble. But my mission is to be there giving him the tools in his toolbelt to pick himself up and keep moving forward.

 

School. Woah. When I picked out and purchased a lunch box last week ($4.99 at grocery outlet score!) I swear I fast-forwarded in my mind to highschool graduation. What is it about being a mom, that begs for time to slow down, all the while, waiting for tomorrow to come? He hasn't seen his lunchbox yet, he will be SO excited. Its the little things right?....

 

We don't talk about school much with Ethan because he doesn't have a good sense of time, so he would keep thinking its "tomorrow".... But we are still mentally prepping, and focusing on establishing a good routine NOW, so the change isn't so ground-shaking come fall.

This is my newest routine board. Ethan's counselor suggested solid visual aids, to help alleviate some of the "nagging" from me, to help him focus and stay on task (some days this just isn't possible) and also to enable him to be more independent and take ownership of his own responsibilities. The board pictured above is specifically for his morning routine.

 

 I took a picture of him waiting for his morning clock to turn green to wake up, turning off his radio, brushing teeth, changing clothes, and putting the dirty laundry in the basket... this has been pretty effective as of recently with sufficient bribes motivation. This also gives me a chance to get breakfast ready, because we tend to have a LOT of struggles around impatience and rude words while waiting for meals. Cant blame him TOO much. I get crabby when I am hungry too.

 

I am planning to make another one for bedtime routine, then eventually for the daily flow.. (school type activities ect)

 

So, what's new with you?



Put some spring in your step

Last weekend we took the boys to a friend's house to check out the farm. She had some new lambs amongst other creatures. Luke showed no fear, and wanted to poke the chicken in the eye. Ethan kept his distance but was still interested. :)

Luke is...

Sweet. Shy. Cuddly. Stubborn. Silly.


He loves muffins! (Fuffins)

He adores duplo legos.

He gets goofy and giggly at night when he is sleepy.

He enjoys playing quietly by himself. But next to me.

He always carries a water bottle around. Sometimes 2.

He is obsessed with my pots and pans.

He is very good at following instructions (when he wants to!)

He LOVES doing what his big brother does.

He sleeps all night.

He still takes a nap (YAY FOR MOMMY!)

He begs for me to read the same 3 books over and over... and over.

He hates being left out.

He always dumps out the toy bin, even if he just was instructed to pick it all up.

He also dislikes tomatoes, beans, and cheese.

He screams about EVERYTHING. Ear piercing screams.

He gets mad if I try to help him.. (he can do it HIMSELF)

He throws food on the floor.

He will hate his dinner before he even tastes it.


THIS sweet little munchkin is so silly. He loves to make me laugh. He gets "embarrassed" when I praise him for doing something right. Its so cute. He is growing quickly and developing an independent attitude about things he can "do himself"... while at the same time, still loves being close to me. I so appreciate that, and hope that it lasts. We look forward to potty training him this summer, and maybe even trying to learn how to ride a trike! We love you L.J.!

 He was so excited to put turkey on his finger, just like olives.

 He thinks this is how tongs are used...

 

food food food. Foodie Food Food.

I love food.

 

I know I am not alone here. I love to cook. I love to bake. I love to create. I love to eat.

I love to EAT.

Here's a few of our foodie adventures lately around Holmes Manor.



I made this silly golf cake for Seth's birthday. Banana cake with more frosting than we could ever consume. Ground up GF cookies for the "sand"... fun right?

 

I took my Ethan on a Mommy-Son date last weekend. We went to the fro-yo place and Ethan always gets sorbet (dairy free of course)... We don't usually eat sugar but this was a special treat. He LOVED it.

 

 Don't let this face fool you, this kid LOVES veggie juice. It was too cold for him... I try and juice at least once a week and Luke is the only mancub that will drink it. (Ethan--uh-- not a chance).. this week we did kale, spinach, celery, cucumber, carrot, swisschard. YUM!

 This here is my popcorn buddy. He calls it "cop-corn".... ha!

 

Did you know you can grow green onion from the stubs? I don't think "stubs" is the technical term, however, if you chop off the tops and stick just the roots in water or dirt, voila'!

 Green Onion Kitchen Pet!

 

Did I mention I love food?

Domestic Engineer

Have you heard? I got a promotion. I am officially a full-time stay at home Mom. Am I crazy?.... maybe a little. I find it interesting that being at home with the kids used to be common. It used to be the norm... expected even. "These days"... its actually quite difficult to be home full time and raise our children. Financial situations make it difficult and sometimes impossible for moms to be home all the time with their babes. I feel so incredibly grateful and blessed to finally have this opportunity to spend and invest in my kids!

Ethan and I officially started preschool at home this week. Why not start off my new career with a bang? Ethan wrote his name for the first time, and also started with scissors. I made a long list of goals, things that I would love for him to accomplish or learn before next fall. We will see how it goes. The list includes things like, learning to spell and write his name. Learning to use scissors. Learning to count to 20. Feeling comfortable with all the sounds of each letter, and beginning to sound out words. I hope to teach him about the calendar, months, and seasons. We have already started talking about coins, and learning about money. He really loves to learn new things, and I want to take advantage of this phase. I am excited and hope to just enjoy this year.

Luke is starting to use words and learning how to communicate without screaming or whining. Its a slow process, but he's getting there. He is sassy and is a little bit of trouble maker sometimes. He likes to hit his brother, and take his toys from his hands. He also has taken a special liking to electrical outlets and power cords much to my dismay. STINKER. His favorite words are "Ad-Dee" (daddy) and "no" which means "yes". He also says "Ah-Ah" which means "all done." He has a silly sense of humor singing his night-night lullaby in a fake opera voice. Silly boy.

As for me, I have been spending my evenings after the kids go to bed doing a lot of crochet. I started making these headbands and some people of facebook showed a little interest and I started selling them. now I make headbands all the time. Its fun and a good way to make a little "extra"... pretty cute, don't you think?

Be strong Mama..

{{Just a side note, it took me over a month to write this.. sorry for the lengthy post, its primary purpose is for journaling for my own personal record...}}


"Be strong".. Ive heard that at least 100 times this last 2 months... Most of our friends and family already know this last few months as been a whirlwind for our family.

 

This is the story about a series of unfortunate events that resulted in Luke being admitted to Doernbecher Children's Hospital for 16 days. Many weeks ago, Luke and Ethan and I were all sick with a cold.. and we started to improve, and then I suddenly got worse and my cold turned into bronchitis and pneumonia.. The boys seemed fine at that point, and I started on antibiotics. As I improved, Luke woke up from a nap one Sunday with a raging fever. He was inconsolable and so I took him to the urgent care. We suspected an ear infection because he had no other symptoms.

No cough.

No wheezing.

Nothing.

Except this awful fever. 103-104.. So the doctor ordered a chest x-ray. I was so surprised- Pneumonia!

She started him on antibiotics right away. The next day he was worse.. not better as I had expected. Monday morning, I took him to the ER at OHSU. By the time we got there his ibuprofen had kicked in and he was acting like this...

The doctors assured me to wait and give the antibiotics time to work. so we waited. and waited. and waited. They said 24 hours.. then they said wait 48. All the while he was getting worse and worse. And my gut told me he was really really sick. Tuesday night I took him to his primary care doctor, because the fevers were reaching 104-105. Since his fevers kept responding to the ibuprofen (coming down).. there wasn't a lot of concern. The doctors kept encouraging me to give him ibu and Tylenol around the clock.... even as much as waking him in the middle of the night to take the medicine, so he didn't have a lapse in "coverage"..

Wednesday night I sent him with Seth to see a DIFFERENT doctor (the 4th doc that week) and pretty much got the same response. His lungs continued to be clear and no wheezing so they weren't really concerned. They had considered that this was viral pneumonia and maybe that was why antibiotics weren't working.. a different doctor considered a stronger antibiotic the next few days IF no improvement. and at this point we were on the 3rd full day of antibiotics. I was so discouraged. He was so sick. My Momma feathers were getting pretty ruffled.. why are no doctors seeing what I am seeing?!

Thursday came and I had to work.. I had already missed work for Luke on Monday, and the week before for my own illness. It was painful to leave him..  that evening after work, a 5th doctor that week asked me to bring him into the clinic and she would look at him. She listened to his lungs, and examined him and came to the same conclusion that I did... he was REALLY sick. She started him on an arsenal of antibiotics and ordered a chest x-ray to be done first thing the next morning. She said if there wasn't remarkable improvement within 24 hours, she would directly admit him into the hospital.

Friday morning came and I missed work that day. His chest xray looked bad. The pneumonia had spread to fill his entire right lung. AH! my poor little buddy!

He was miserable. I spoke with the doctor and she decided for me to go home and pack up to prepare to head to the hospital. In my mind I was preparing myself for a couple nights stay to give my little guy I.V. hydration and antibiotics.. little did I know he would be there for far longer, and much more than just I.V. fluids.. 

my sweet sick guy. This was at the E.R. (the second time)



When I got packed up and headed to Portland to the admitting department.. I got a phone call from our doctor while I was en route, she said that the radiologist had seen the xray from that morning and there was concern that he had a partial pneumo thorax. This was causing a small collapse in his lung. As a result I was instructed to go in through the E.R. instead to make sure he was stable and didn't need to go into ICU.. So that's what I did. We got to the E.R., just my baby and I (I had assumed we would end up here and had Ethan staying with a relative) And they brought him back right away. Our amazing doctor had called ahead so they knew we were coming. The transition from E.R. to the room that she had called ahead to reserve was seamless and quick and I am so appreciative. Its a rare day to spend less than 90 minutes in an E.R... and that includes the time it took them to set his I.V. in his arm. They found him to be stable and we were transferred to his long term room.

The doctors ordered a catscan, then changed their mind, deciding on an ultrasound of his lungs instead, to get a picture of what was going on. The ultrasound results were not good news. Seth had arrived by then (thankfully!) and we were told that Luke had developed a pleural effusion in his chest cavity. I learned that that was the space between his ribcage and his lung. It was fluid built up around his lung, and it wasn't allowing his lung to fully inflate. And it was infected. And it was bad. The next news was awful too, they had decided that he needed a chest tube to be placed to drain all this infected fluid. I cried. a lot. I couldn't even imagine them slicing a hole in my baby. The I.V. was quite traumatic enough. .... I thought itd be fine.. I thought with the I.V. antibiotics and fluids, he would turn the corner and start to improve quickly.

 We didn't sleep. That night I stayed alone with Luke so Seth could stay with Ethan.

 It was strange.
A little scary.
His room was too bright.
Nurses came in and out all night long to check his vitals and administer pain meds.
He woke at 1 am and was wide awake as if it were morning.
I cried a lot.
It was rough.

This was one of the hardest parts of Luke feeling so sick.. any time he had a fresh dose of ibuprofen or Tylenol he would act "fine"... and as soon as it wore off he would be miserable, lethargic, and lose all appetite. We felt like a giant yo-yo. Up and down for weeks..

The next morning they informed us of the time of the procedure so we waited for transport to come get him. He wasn't allowed to eat or drink prior to the procedure so that was a little rough to have to deny him.. and that wasn't the first time we had to deny our screaming hungry and thirsty boy of food and water. What a gut wrenching feeling really..

They came and got our babe and rolled him still in his giant crib down to the surgery floor. As they prepped for anesthesia they explained to us in detail what they were going to do and how. They allowed me to hold Luke as they put him to sleep so that I could see him breathing ok on his own. We left and waited anxiously in the waiting room for about 45 minutes. The surgeon came out to let us know everything had gone fine and that he was fine.. He did, however seem concerned that they weren't able to get any fluid as they passed the tube initially. This concerned me too. We went to see our guy in recovery (picture below).. he was in and out of sleep but when he woke it was with horrific cries. He was in pain. It makes me cry just typing this memory. Its an indescribable feeling that a mom feels in her heart and her very being , to see her child hurt. He had braces on his arms that forced his arms straight to keep him from pulling the tube out. The arm braces confused and scared him as he was so restricted. His oxygen dropped every time he woke from the pain. It was a horrific sight. He is so small. And his age doesn't allow for us to try and explain the pain, so he didn't understand. Oh my heart. It hurt for him. My mind screamed to make the pain stop for him.

The doctors had a plan to instill a medication (called TPA) into his chest tubes to help break up the fluid (they described it as more gelatin-like) to help it to drain. Without drainage, the antibiotics couldn't reach the infected area, and he couldn't get better.

On day 2 of the TPA they decided to run a catscan to determine his progress and get a very clear picture of his problem. They used a bedside sedative to help relax him so he'd hold still for the procedure. He did amazing. My little trooper! The catscan was not encouraging. They found a second effusion down lower below the lung, and also discovered that he had an abscess inside of his lung.

 

Oh boy. So now what?

There was a LOT of deliberation on how to proceed with his care. There was a family medicine team of doctors, a surgical peds team,  and a pulmonology team..all attempting to come to a same plan regarding Luke's treatment..There was discussion of Interventional radiology going in to place a second chest tube, guided by catscan.. There was talk of they attempting to aspirate the abcess. There was discussion of having a picline placed, which we learned was a permanent I.V. used to administer I.V. antibiotics, pain meds, draw blood from, nutrition for people who weren't eating enough, and also would allow us to go home and administer I.V. antibiotics at home if necessary.. and the very worst of all, there was discussion of a major surgery called the VATS, which basically meant they go in and manually scrape out all the gunk using small cameras. The scary part was that they said with kiddos his size it was hard to get all the tools and cameras inside such a small area and that 50% of them would end up going in with a full incision... They deliberated for 48 hours, meanwhile putting our hungry baby on food and water restrictions pending another procedure. That was pure misery for us all. We understood that having food and water in his tummy could cause major issues during  a procedure, but until they could decide what they were going to do, it was hard just having him not eat "incase" they were able to get him into a procedure. What a nightmare.  We were so on edge.

Below is a picture of a cross section of his rib cage from the C.T... the black is his lungs (the healthy parts) .. the bright white areas are his bones (ribs and spine and shoulders) and you can see one lung is really full of grey junk. Not good.

After much deliberation they finally decided to place a SECOND chest tube. We were so relieved that someone finally made a decision! And it was the right one. Praise God! The same doc that placed the first tube, inserted a second one (and readjusted the first) and got a large syringe FULL of fluid the moment he placed it. Like hitting a gold mine! hallelujah!

While Luke was at the hospital he had a chest X-ray every single morning to monitor his progress. The picture below is an xray from his first chest tube placement, and then the xray right after his second tube placement. They readjusted the first one so its lower, and then the newest one was placed below that to drain the fluid from lower in the pleural space.

Well we are grateful that after the second tube was placed he started improving remarkably. His appetite increased, his fever broke (finally after 2 weeks!) he began to perk up and act like his old self. There was still a small chance of needing a VATS surgery if xrays didn't start showing improvement, so we continued to pray, and he continued to rally. We finally got word that one tube at a time could be removed and that the doctors would watch for signs of infection. The process was slow.. and grueling. Luke didn't like the tubes, any time he would move or twist they would pull at his side, the bandages ripped his sensitive skin... but we waited...

 

Wait a day, remove a tube, wait a day, remove second tube, wait a day, switch from I.V. to oral antibiotics, wait a day, remove his picline, wait a day... THEN after 16 days at the hospital, we got the news that Luke was going to be released. Praise GOD.

 

Luke continued on strong oral antibiotics for a full month following his hospital discharge. He finished last week as a matter of fact, and we are standing in faith that he is well, and healthy, and will continue to be. The pulmonology team ordered a chest xray to be repeated in 4 months, and we are just so grateful that he is back to his sassy healthy self.

 

"Be strong Mama"... hearing that and doing it are two completely different things..God has been so faithful in our weakness and fear...and we could NOT have made it through those 2 weeks without our family and friends. We are still awestruck by the outpouring of love, encouragement, help, and prayer that was sent our way. Our hearts are so grateful!

Bubba

Let's talk about this guy. Luke Jonathan (we call him L.J.) just turned 1.5.

Isn't he adorable? I just love watching him grow and learn.. He will try and say words if i ask him to, but the funny thing is they all sound the same. If i ask him to say "Bye-Bye" or "Please" or "Thank You" he says the same thing - He says "Da-DA!".... Its pretty funny. I cant get enough of it. He says it so earnestly, I mean he is really trying to copy me. Silly boy.

Here he is making his own bowl of cereal. Apparently he is way too cool for dry cereal. He reached over and stole a measuring cup from my drawer and went ahead and made some cereal.

Uh oh, where did L.J. go??

He also enjoys playing with all of my cups (in the nude)... He stacks them. Puts lids on, takes lids off. Repeat.I wash them daily. Its a little ridiculous, but it makes him so happy...how could I deny him that?

 

My "Velcro Baby" this guy is usually glued to my leg or my hip. He loves his Momma! I am not complaining. I know I will miss this phase when its gone.

 

 L.J. we love you sweet boy!

What a guy!