Showing posts with label Reactive Airway Disease. Show all posts
Showing posts with label Reactive Airway Disease. Show all posts

12.18.2018

Around Here: Week 50 {2018}
















{photo credit: Logan}

{Where's Carly???}



Loving... these words: "Maybe knowing you're dying changes everything- while actually changing nothing.  Because we all know it every single day, whether we have a diagnosis or not: we all get one container of time- but no one gets to know what size that container is." -Ann Voskamp

And also these ones: "Your one broken heart always splits God's heart in two.  You never cry alone."  What beautiful comfort during hard times.  She is a phenomenal writer and I am loving The Broken Way, underlining something on nearly every page.  She says good things will grow out of all of our wounds and suffering, and I quite like that idea.

Watching... The Quiet Place with Josh and loving it.  I generally don't love scary movies, but this one was really good.  It wasn't gory.  And it had sign language, which I love in a movie. (Josh and I met in sign language class in high school and are fluent. Him more than me.)  Plus it had Jim from The Office in it, so that helped, too!  Love him!

Feeling... sad about Catelynn and Tyler (on Teen Mom OG) taking a break.  It is so ridiculous that I am so impacted by it!  But they are high school sweethearts (like us), and I just believe in them.  I so want them to make it!!!

Sending...  out our Christmas cards.  (At least most of them- some I will be handing out along with some baked goods-yummy!) I wrote up a Christmas letter this year, which was (as always) good for me.  I really enjoy looking back over our year and thinking of what it held and what can be learned from it.

Grateful... for my friend Shana & her friend Tammy.  Friends can just be the best!!

Taking... Logan to the eye doctor this week.  He's been complaining about his vision at school, especially when he's having to look at screens.  The eye doctor said since his last check up in June, his prescription has changed some, but not significantly, so he doesn't think we need to change Logan's prescription, which is a relief.  His eyes themselves also look healthy, which was a relief to hear because I had been worried with his new seizure activity.

Reading... The Deal of a Lifetime by Fredrik Backman and Winter Garden by Kristin Hannah.  Winter Garden is really good.  I'm not sure how I felt about The Deal of a Lifetime.  It was kind of weird.

Proud... that I have instilled in my children the ability to recognize the beauty of a sunset.  Logan came RUNNING inside the other afternoon, begging to use my phone to take pictures.  I said sure, assuming he was taking pictures of something he and Jack were up to.  But when he came inside a few minutes later, he showed me the most stunning sunset pictures he had captured by climbing on top of his play structure in the back yard.  I love that my love of nature (which came from my dad) has been passed on to them.

Playing... at the park one afternoon after going so I could take pictures of the sunset.  The kids wanted to stay and play, so I said YES! and it was the best yes I said all week.  They were so happy, and therefore, so was I!  Plus I love the picture I got of them climbing the tree in the cotton candy sunset!

Enjoying... our first snowfall.  The boys went out sledding before school, and we enjoyed watching it fall.  I'm glad we took advantage because it melted fast and we've had rain ever since.

Working out... every single day this week.  It felt so good to do that after missing all of last week.

Freezing... in our house because of cold temperatures.  The twins wrapped blankets around their necks the other night while playing Legos because they were cold, and I'm always wearing layers.  When it's windy, it's just the worst!

Dealing... with lots of naughty behavior from Carly May this week.  She cut the hair off her My Little Pony, ate a cat treat (eww!) and just made messes like nobody's business as I tried to get ready for Christmas.  She's lucky she is cute!

Wrapping... gifts for my kids and the staff at school.  I put together really cute little packages for the staff assistants with bath bombs & Hershey kisses that look really fun.  I hope they love them!  I am so, so grateful for all they do for my kiddos everyday.  They are angels on earth, I tell ya!  For their teachers I did gift cards & chocolates- win/win, right?

Finishing... nebulizing Wyatt after two solid weeks.  I am so, so excited that he never needed the oral steroids this round.  I am just so proud of him and his lungs.  What a huge step in the right direction!

Laughing... that Carly is at that stage where she thinks that if she can't see you, you can't see her.  She will close her eyes, or go under her blanket, and think that for SURE you don't know where she is. It is so precious. We all giggle and pretend we can't find her, and then she pops out of her blanket on the couch, or opens her eyes and shouts, "Here I am!"

Letting... Jack wear Josh's old "Mr. C" sweatshirt because we both know that he won't always want to be Josh.  So we're going to let him be just like him for as long as he wants to be.

***


My new favorite. From my sister.
Hahaha!

***

Elf Shenanigans:
Sledding
Can you find Dashy?

Eating in the fridge
Hanging out in the car
Driving Carly's toy car around
One morning he gave us gingerbread houses!
He decorated Wyatt's little tree for him!
***

9.21.2018

Around Here: Week 38 {2018}





















Shocked... to find out that Josh has shingles and Bell's Palsy.  It started with some pain in his scalp during a haircut, then a bit of inner ear pain.  Then last Thursday he woke up and the right side of his tongue was numb and couldn't taste food.  Then Saturday morning he woke up in Vancouver (where he had traveled to help his brother, who is moving to our town) and the entire right side of his face was drooping.  I encouraged him to call the advice nurse and she said he needed to get into the ER.  In the ER they put all his symptoms together and figured out that he had shingles (the scalp & ear pain) that lead to Bell's Palsy (the tongue numbness & face drooping).  Basically the entire right side of his face is paralyzed.
Since then, his eye is now unable to close and he has to put eyedrops in constantly to keep it lubricated.  We also have to tape it shut at night so it doesn't dry out.
He's in a ton of pain from the shingles, and the Bell's Palsy is insanely annoying.  He can't taste his food or blink his eyes or smile normally, and the doctor told him it would be at least three weeks (on the short end) but could take up to six months to completely heal.  Luckily the shingles should heal in about two weeks.
In any event, it's going to be a long road, and my heart just hurts for him.

Coping... with this news by crying hysterically in the shower; going on long walks; talking to friends; eating too much candy; drinking soda (which I haven't had in months); eating comfort food; buying books at Goodwill (my favorite splurge); binging on bad TV at naptime and checking things off my to do list.

Happy... that Josh's brother Samuel moved here permanently.  My kids adore their Uncle Samuel and Josh has been happy having him around as well.

Hanging... with my girl Shana and feeling so grateful for her friendship.

Getting... flowers from our neighbor Barb.  They have brightened my bedroom all week.

Enjoying... muffins from my friend Megan.  Carly is also enjoying them.  And by enjoying, I mean telling me, "I have my own mom. I don't want to share yours." Hah!

Encouraging... a friend (and myself) to find 3 blessings per day to slowly find joy again.  Sometimes (often times) life is hard. So hard.  And just remembering each night as you fall asleep, three little things that made you smile or feel grateful can shift your focus from all that is wrong to all that has gone right.

  • Stacks of books
  • Sister laughs
  • Spontaneous hugs

Walking... to school each day, and enjoying it so much.  The fall weather is simply gorgeous, and I love being out in it.

Going... to the doctor for my recent hair loss.  About two weeks ago, I started noticing I was losing more hair than normal.  It sort of came on my radar. Then this week I really noticed I was losing a LOT of hair.  So much that I would venture to say I've lost more than half of my hair since the beginning of September.  It's so upsetting.
I got myself an appointment earlier this week, assuming it was a delayed side effect from one of my medications (I take Topomax for migraines and Prozac for anxiety), but he said that it's not from either of those (which I've been taking since January & April).  He believes my hair loss is from chronic emotional stress, likely from the super stressful spring we had, when Logan was having an increase in seizures and Wyatt was sick back to back to back.

Not reading... enough this week.

Spending... too much time on social media.  Blah. (Accepting tips & tricks for how to spend less time online.  However, I'll be honest- I'm not willing to give it up entirely! #addicted)

Meditating... everyday this week, which is a step in the right direction for my brain, but hopefully next week I can add more reading and less scrolling to my meditating.  I use the Calm app, and I can't say enough good things about it.

Sleeping... through the night twice this week, and feeling amazing on those days.  I seriously love when I wake up and it's 4 or 5am and I'm like, "What?!? I slept all night?!?" It's the BEST!

Loving... the new couch Josh surprised me with.  It's a beautiful sectional from Costco and fits our whole family, and with room to spare.  The kids have all thanked Josh profusely for it, it's so cute!  The cats are big fans (obviously!) and it even makes me kind of excited for winter time and snuggling up for movie night with the fam.

Celebrating... Logan going two weeks seizure-free on his new meds.  We switched him after his last appointment from Lamictal to Tegretol (Carbamazepine).  He takes 200mg 2x a day.  So far, it seems to be working wonders.  I am ridiculously grateful and hopeful that it continues to work for him.

Taking... Wyatt to the doctor this morning when he woke up and blew a 225 after blowing 300's all week.  He became sick practically overnight.  What is just a runny nose, no big deal, for everyone else, settles into Wyatt's lungs and causes him severe distress, requiring an extended round of steroids, in addition to a week's worth of albuterol and budesonide treatments in his nebulizer.  It makes me grateful I enjoyed the break that the summer offered from his Reactive Airway Disease and asthma, and also grateful for all the steps we took to prepare for illness this fall (preventive inhalers, buying a new nebulizer, refilling prescriptions, and getting a new kind of nebulizer breathing apparatus called the Pari).
I am hopeful that with all these steps in place, and the fact that we got him on steroids so quickly this time, he will recover fast and be back to his regular, healthy self ASAP.

***

8.25.2018

Around Here: Week 34 {2018}

















Purchasing... new porch furniture at 50% off last weekend.  I had been sitting in our one porch chair, dreaming of a small porch table (to hold my books & journal) and an additional chair when the kids and I ran to Rite Aid to pick up a prescription.  There, as we entered the store, we saw all their outdoor furniture was on sale.  It matched what we already had and I came home with both a chair and table for less than $25!  I have already enjoyed them so much and love sitting out there with Josh after we've put the kids to bed.

Enjoying... pizza & movie night with the kids last weekend while Josh was out of town.  Jack & Logan helped me make the pizza and we watched A Wrinkle In Time.  It was really good.  I love when we rent a movie that I enjoy watching with them!

Delighting... in Carly.  She is constantly trying to make us laugh (like with her new silly face pictured above) and with what she says, like "Boom! Roasted!"when the boys are teasing each other. She has discovered a hand-me-down hat that she wears constantly, adorably.  She is trying out potty training (all on her own) and is overjoyed at the m&m's she earns.  She's pooped on the potty twice, which is amazing to me because it took the twins six months to finally be comfortable pooping on the toilet!  When the boys go back to school I'll be jumping on the potty train wagon full time.  After she goes I tell her I'm so proud of her, and she says back that she's so proud of me. Ha!  She's grown so independent over the summer.  She gets out her own toys and snacks and washes her hands all by herself in the bathroom, on her VERY tip toes on the stool.  I am also loving her bedtime prayers.  They consist mostly of what she's thankful for, which varies from her people (Grandma, brothers...) to her bed or strawberries.  At the end she says, "In Jesus Name Amen", but all together like, "Injesusnameamen".  It's just my favorite.

Taking... a day trip to Wenatchee to see my sister and her kids.  The smoke from wildfires has kept the kids mostly stuck inside (especially Wyatt with his sensitive lungs) so my sister and I have gotten together each of the last two weeks.  The smoke has cleared off & on, and we've taken advantage on days that have had clear patches, but mostly at our house it's been a lot of indoor play.  So a change of scenery this week was lovely!  The kids played so well together and Roxanne and I got to talk and play with each other's daughters.

Going... to counseling again this month.  I slowed down to once a month for summer, but I think I'll pick back up to twice a month for fall.  Especially seeing as Logan's seizures have picked up and Wyatt's asthma is likely to gain momentum as well with him going back to the cess pool elementary school where he's likely to catch more colds. As my stress level increases, my need for more time to sort it all out with him also increases, so planning for that proactively is a smart move.
This week we talked about what's working for me and how to continue that.  I am working out nearly everyday, which helps my stress level a ton, but am also giving myself grace when I need to (like last week when Logan had his six minute seizure, I didn't work out, I just laid with him instead) and listening to what my body needs without judgment.  He gave me a really neat story that I might share next week about how sometimes it's our job to put certain worries into God's inbox and that's been helping me as I have worried about sending Logan back to school with his seizures and stressed about Wyatt's school year after how much of last school year he missed from illness-related-asthma.  Reminding myself to give it to God helps a lot. (...even if I have to give it to Him over and over cause I keep taking it back. ha!)

Playing... game after game of Hide & Seek.  The kids are all obsessed and I swear it's the only thing getting us through these last two weeks of summer.  All four kids can play, and they have come up with some awesome hiding places.  The longest winning streak is Logan, who went six games in a row without being found.  Added bonus of Hide & Seek is that Carly no longer counts out of order! Yesterday she counted to 8 by herself and didn't miss any numbers!

Making... slime twice with the kids.  All three boys got kits for their birthdays back in June and I (being a brilliant, and humble, mother- hehe!) held onto them knowing there'd be a time in summer when we would desperately need them.  We made it once with just our boys, and once with their friends when they came over.  I joked with Josh and my mom and sister that I would be waiting for my trophy in the mail.  I hate messes, and I hate making slime. So doing both made me pretty much feel like the best.mom.ever.  Luckily, the slime held their interest for a long time after we were done creating it, so it was totally worth the time invested on my part. Even Carly loved making it and playing with it in her high chair.

Laughing... as Jack continued reading by nightlight when I turned out the lights and he wanted to read to the end of the chapter. He's a kid after my own heart!

Seeing... Wyatt's pulmonologist while she was visiting our town, which meant no two hour drive to Spokane (wahoo!) and the chance to get him all set for the new school year.  We got him a new nebulizer (so now we have a back up!), a new peak flow meter (another back up!), emergency steroids in case he gets sick over the weekend (so we can avoid an unnecessary trip to the ER), and a prescription for 44mcg of Flovent, which is a preventative inhaled steroid that he will take 2 puffs of once a day starting now throughout the school year to give his lungs an extra boost.  The hope is that this extra boost will keep him from nosediving so dramatically when he does get sick.  Then when he is sick, we will switch him to 110mcg of Flovent 2 puffs, 2x a day for a week to get him through.  Unless he's REALLY sick, in which case he'll be on Budesonide in the nebulizer. Gosh it's a lot to keep straight!
In addition to all that, we ordered him a new breathing part of the nebulizer called a PARI Reusable Nebulizer. It delivers more of the medication to the lungs and makes sure less is breathed out.  It was recommended by our allergy doctor actually, back when Wyatt was allergy tested in June.  I am excited to have so many different tools in my arsenal to help fight the asthma that tends to overtake him when he's sick.

Bummed... about Logan's seizure this week.  He had a big one last week, and the one he had this week was very small in comparison, only maybe a minute long, but I was still hoping he wouldn't have any.
At bedtime one night this week Logan asked me why Jack doesn't have seizures and he does.  It took all my will power not to cry while I was answering him.  He wasn't being rude, just curious.  He genuinely wanted to know why he has this affliction while his identical twin brother skates by without it.  I told him about epigenetics and that once the egg split in utero their experiences started being different.  And that those differences can turn off and on different parts of their DNA.  He said he wants to ask his neurologist if she sees any other twins who have seizures whose twin doesn't have them, and he displayed a complete understanding of what I was saying because he responded with, "So Wyatt could be a twin, and his twin could potentially not have asthma." Bingo.
I often find myself trying to find reasons Logan has epilepsy.  I dropped him twice as a baby (true story) and wonder if that's why.  Once he fell off the changing table because I was distracted by Jack and the other time he fell off the rocking chair.  He got less breastmilk than Jack because they recommended he not be at the breast because it was so much work for his tiny body.  So he got a lot more formula. I also wonder if we had gotten him out sooner if he wouldn't have it.  His growth had slowed so dramatically toward the end, but the weekly ultrasounds weren't catching it.  They estimated him at nearly 6 pounds when in reality he was only 4 pounds at birth.  I wonder about what I ate, what he's been exposed to...  Maybe it's the Windex he sprayed in his own face at 18 months when he got under the sink that one time.
Then I come back around to the conclusion that it doesn't matter.  It is what it is.  He has it. And the who/what/when/where/why doesn't matter.  We're here now.  And we just have to keep marching forward, hard as it may be some days.

Accompanying... the twins to fifth grade orientation.  We found out who their teachers are as well as who their classmates are. (They're in separate classes again this year.  It's just what's best for them.  They need their own space, their own friends and to not be constantly compared to each other.  Plus it helps the staff with recognizing who is who.)  We also had a meeting this week for Logan's seizures with his teacher and the school nurse.  Until we get his seizures under control, he will have a buddy accompany him to the bathroom, around campus, and have someone designated in the classroom whom he will inform when he feels a seizure coming if he can't get to the teacher in time.  All in all, I feel a lot better about the school year starting for him.

Sympathizing... with Jack, who has no friends in his class this year.  Not only that, but he has a new teacher this year, after having the same teacher for the last two years (his only two years in public school).  He's got so many nerves, the poor kid!  I tried to console him with the fact that he'll really be able to focus on academics... but oddly that didn't comfort him a whole lot. Ha! #momperspective

Coordinating... my wall and phone calendars in preparation for the school year.  I am trying to be proactive about planning things and staying organized.  I made a lot of appointments in the last two weeks, so getting those calendars together was important!  I also dropped Wyatt's inhaler off at the school so things are all set there for him as well.  Even though I am sad about summer ending, there is something about the start of the school year that has me making lists and getting excited about new goals and getting organized around the house. I'm trying to go with it!

Receiving... roses from Josh for no reason on Thursday.  He got home from his first day of work (his school district starts before ours) with a dozen white roses for me because he'd been at the store shopping for supplies for his classroom and thought of me.  I think it was his way of saying thank you for taking care of the kids and preparing for the school year.  It's not as simple as it used to be with just buying clothes, shoes & school supplies.  Now I have to deal with both Logan & Wyatt's medical issues and it's a lot to bear.  I just love that he thinks of me. It's so heart warming & romantic.

Reading... very little.  I looked at my reading list for August and it has one book (ONE BOOK!) on it. Goodbye, Vitamin is the only book I have completed this month.  I got halfway through An American Marriage before it had to go back to the library.  I also got halfway through Ghosted before I got bored and shelved it.  I'm almost done with In Shock and am getting close to finishing No Cares About Crazy People on audio, so hopefully before the month is up I will have at least three finished books, but that is pathetic.
I am trying to figure out why that number is so low, and all I can figure is that Josh spent a lot of time out of town, so I was single parenting for a lot of it, plus we were on a family vacation for nine days, which did not allow for any reading time either.  I am hoping I can make up for those low numbers in September because if I keep this up, I will not make my yearly reading goal!

***

Meditating on:
{I love this.
I wish I knew who the artist was!}

All week I have been ruminating on this.

Particularly the lines:
"Her roundness where I would like flatness,
Her softness where I would like firmness,"

So I am trying really hard to love my body
Just. like. this.

 It's done so many amazing things for me,
(birthing four healthy children for one)
I owe it to myself to love it.
Without condition.  

***