Category Archives: Parenting Kids with Special Needs

7 Quick Takes: Choosing to Find Joy Edition

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7 Quick Takes

— 1 —

Prayer request. My friend Bekah had her son Declan at 28 weeks due to preeclampsia. She and Declan are doing OK, but Mr. D is going to be in the NICU for a bit. Prayers would be appreciated.

Please and thank you! 😀

— 2 —

So I was thinking… I was looking over some entries from 13 years ago, and I used to be a more whiny and negative person than I am today. Granted, there was a lot that wasn’t going well at the time, but a lot of stuff used to derail my day pretty easily. This changed a lot with my pregnancy with Daniel.

— 3 —

Sickness. It was hard a lot of the time. I didn’t know when I got pneumonia in October 2008 that I was pregnant at the time, and that definitely would have changed the treatment I sought for it. Thankfully, none of what I took hurt Daniel that we know of. I also got some pretty serious colds, and I was very much limited in what I could take.

— 4 —

Something about Mary. I started thinking about the Virgin Mary that December when it was -20F for weeks at a time, and I would be driving into work with gloves on with socks over them, trying to keep my hands warm and to keep them from aching. It struck me one day how hard her last few months of pregnancy must have been, especially the journey to Bethlehem.

— 5 —

Daniel’s birth. The traumatic experience of Daniel’s birth and the shock it gave me in so many ways changed how I approached each day. That first week, I was so shell-shocked that it seemed like things were getting worse by the day, but my little creature held on. Despite everything getting thrown at him, he was able to persevere through. One of the nurses told me to start finding those little joys in each day because we were in for a marathon with him. Her advice proved helpful as it gave me something on which I could focus to hold onto hope that he would eventually make it home, given that it took a month before I could even form the words to pray, and I had to work through A LOT of anger.

— 6 —

10 years later… I have held onto that practice of seeking out the joy in every day, even when we went through Daniel’s epic hospitalization 8 1/2 years ago, and that joy was sometimes that he didn’t die that day. It has stayed with me through more hospitalizations, Daniel’s autism diagnosis, the end of my marriage, and the divorce process that took two years. Even on the worst days, I choose to seek out some small joy in something. I don’t know that I would have survived if I could not do this.

— 7 —

New music. I heard this song last night and thought I’d share.

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.

7 Quick Takes: Daniel in Hospital Edition

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7 Quick Takes

Just a warning: lots of mentions of poop. Skip it if it is going to make you queasy.

— 1 —

Backstory. Daniel puked up a feed on Monday afternoon, and I decided to withhold his evening feed to give his stomach a rest. Well… he couldn’t keep anything down on Tuesday, and he started puking up stuff that looked like coffee. After a Google search on what it might be, I made the decision to take him to the ER. It turns out (after an x-ray and bloodwork) that his lower G-I was completely impacted with poop, and nothing was getting through. We made the decision with our ER doctor to admit him for hydration and to see if they could get him pooping again.

— 2 —

Wednesday. They tried various things and he puked up everything they gave him through the tube… so they ended up taking him down to the OR and manually disimpacting him under anesthesia. (I’m not going to describe how. You can Google it.) The good news: he came out of anesthesia well, and I need to find out what they gave him to get that outcome because he has been crankier than cranky the previous two times he was under anesthesia.

— 3 —

Last night. He’s been on a continuous drip of GoLytely, which is the stuff they give you to clean you out before a colonoscopy. I slept for a good chunk of the day because I was up until 5 a.m. with people coming in and out of the room to change his training pants and also change blankets and sheets. Thankfully, the nausea is gone.

— 4 —

Today. My priest woke me up at 10:30 a.m. to anoint Daniel and me. (I had been dead to the world yesterday when he stopped by, so I told him he was allowed to wake me up if I was asleep when he came by.) It has been a day of changing training pants and sheets, and unfortunately, the nurses were having to do it all as I accidentally took my night meds this morning and took a decent nap this afternoon.

— 5 —

Tonight. We’re letting him get up and walk around a bit as long as he holds on to his IV pole. We are currently waiting for his CNA to be available to take him out on the floor for a walk and maybe stimulate him to poop. Once kiddo is asleep tonight, they’re going to figure out a way for me to get a shower. Mom has been bringing me clothes and I thankfully do have clothes to leave in tomorrow.

— 6 —

An interesting discovery. When they disimpacted him on Wednesday, the blockage that they were able to get out without cutting him open had a bunch of his ADHD meds in it… UNDISOLVED!!! This explains the really severe behavior issues we have had as of late.

— 7 —

Prayer request. Please pray that the walking tonight causes him to start to pass the rest of the solid blockage. As much as this is an easy hospital stay thus far, I’m almost out of clean clothes and I am going to feel guilty if I have to make Mom do my laundry to get more. I live only a mile from the hospital, but my car died its final death on Monday, so I would have to borrow Mom’s car to get home and shower or do laundry.

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.

The Simple Woman’s Daybook: July 21, 2019

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For Today… July 21, 2019

Simple Woman's Daybook

Looking out my window… sunny and in the 80’s. It’s also humid, which is not making me feel good. I don’t do heat well.

I am thinking… about my Camp NaNoWriMo piece. I’m around 3,000 words behind, so I think my character is going to have a long conversation or write a long letter.

I am thankful… for the opportunity to help with VBS for the last two weeks. I was washing dishes for it, and it was fun though exhausting!

Me in dishwashing clothes.

One of my favorite things… calm and quiet. It’s in short supply in these parts with Daniel.

I am wearing… my “All Together Now” shirt from Old Navy and jeans capris.

I am creating… my my Camp NaNoWriMo piece.

I am reading… Good Omens by Neil Gaiman and Sir Terry Pratchet. I’m just a few pages in but very much enjoying it.

I finished Inspired by Rachel Held Evans on our 3 (!!!!) hour drive home from Seattle last Tuesday. It was wonderful though bittersweet as it is her last book with her passing on May 4.

I am hoping… the intensive ABA therapy with Daniel works. We are really struggling here.

I am learning… that my sleep deprivation is at a point where my body is just dropping into sleep at night, regardless of my plans to get some writing done.

In my kitchen… Cherry Delicious, a cherry cobbler recipe where the crust is made with cake mix and butter. I made two pans of it for coffee hour this morning, and I think I had one serving left of the gluten-free pan. (It was as good as the regular one, though the crust wasn’t as soft.)

In the school room… Daniel has ESY this week and then he’s off until the first week of September.

Post Script… an excellent guide to tipping.

Shared Quote… “What I love about the Bible is that the story isn’t over. There are still prophets in our midst. There are still dragons and beasts. It might not look like it, but the Resistance is winning. The light is breaking through.
So listen to the weirdos. Listen to the voices crying from the wilderness. They are pointing us to a new King and a better kingdom.” – Rachel Held Evans, Inspired

A moment from my day…

Hosted by The Simple Woman.

7 Quick Takes: “What’s Next?” Edition

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7 Quick Takes

I’m graduating tonight with my AAS in both of the Office and Business Technology degrees from Skagit Valley College, and I have a lot of people asking “what’s next?” when I see them. So… this is my list of things that are coming up:

— 1 —

Appointments. Daniel has a psychiatrist appointment in Seattle tomorrow, and we are going to be grilling the doctor on what we can do because he has been crazy this week. Next week, I have a therapy appointment on Monday and Daniel has a couple on Wednesday. I just called and got a bunch of stuff set up and the calendar is looking a little crazy.

— 2 —

Adulting. The last three years have been crazy with the divorce and school, so I have some adult and legal appointments happening in July to get everything squared away before I’m working full-time.

— 3 —

Possible surgery. There’s a hysterectomy in the somewhat near future for me. My surgical consult appointment keeps getting moved, so I have no clue when.

— 4 —

Biobehavioral Therapy for Daniel. We’re apparently at the top of the list now, so it might be in July or August? We’re hoping it’s late July because we need some tools for parenting and working with this kid. Autism tends to throw all the normal kid rules out and his developmental issues mean that I have a 3-4 year old in a 10 year old’s body.

— 5 —

Camp NaNoWriMo. I’m aiming for 50,000 words of a story written in July. I’m sorting out plot stuff and working with characters right now. It’s something creative my brain can do now that it isn’t full of Accounting or Microsoft Office things.

— 6 —

Family time. My nephew turns 1 this weekend, we have another family thing next weekend, and we’ll be headed to the pioneer cemetery to bury Grandma at some point this summer. I’ll definitely be seeing a lot of family members and I am actually pretty excited about it.

— 7 —

Look for jobs. My resume is up on a few sites and we’ll see what shakes out this summer.

— Bonus —

Here is a picture of me in all my graduation regalia with my honor cords, tassel, and medals. I was also eligible for a stole from Phi Theta Kappa, but I did not get it ordered in time.

Me in graduation regalia with honor cord, tassel, and medal.

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.

7 Quick Takes: Reasons I’m Tired Tonight Edition

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7 Quick Takes

— 1 —

Daniel isn’t sleeping well. We think it’s him feeling hungry and not knowing how to process that. Because Daniel. I’ve been trying to enforce EXTRA drinking of milk to keep him full and I’ve upped his feed.

— 2 —

PTK induction. I was inducted into Phi Theta Kappa (international 2-year college honor society) tonight. I was invited to join in Fall 2017, but I’ve been a little busy. My mom was watching Daniel and Dad surprised me by showing up.

Dad and me at the induction

— 3 —

Portfolio. My portfolio for my Final Project class is due tomorrow. I have almost everything printed out and done, but Sage was being catty yesterday and I need to redo and print out a report for it. I blame the LA Dodgers.

— 4 —

Puke. I hadn’t been gone for five minutes tonight when Mom called to let me know that Daniel puked (of course) and asked if she should give him tomorrow’s meds as he presumably puked up tonight’s. I was on the road to school, so I said “yes”. Well, I’m not totally sure now and am keeping an eye on him. At least he’s sleeping?

— 5 —

Donald Trump is still in office. His mere existence tires me.

— 6 —

Pentecost. I’m writing the prayers for Pentecost and I need to translate them into Spanish… or at least send them to my translation staff, one of whom came into tutoring last week and scolded me for not having them done yet. (God bless my “translation staff” of students!)

— 7 —

Forged in Fire. I’ve been watching “Forged in Fire” reruns while I’ve done homework lately… and this sometimes has me up too late. Oops!

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.

7 Quick Takes: If I Had Not Given Up My Blog for Lent Edition

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7 Quick Takes

Lent is over, it’s Bright Week, and I am back to blogging. (OK… some of you may have noticed that I cheated a little bit by changing the YouTube video on my time off page.) I have been meaning to write this post for a few days, but work and homework have been crazy. There will be 7 +/- blurbs, so I am counting this as my Quick Takes.

If I hadn’t given up blogging for Lent I would have told you… about how weirdly calm I am about Grandma’s passing. It might be because I wasn’t the one cleaning out her room at the assisted living facility and her bedroom back at her house. My mom and her siblings have been dealing with all of this, and I have been figuring out burial service things. We got her ashes back around March 11 (she was supposed to be cremated on March 6… which was Ash Wednesday — because I am a horrible human being, I actually found humor in that), and part of them will be interred at my church in Mount Vernon. My uncle is making a plain cedar box for that, and I am glad to have that figured out so that biodegradable cremation urns stop being in my ads on Reddit. In the meantime, I am incredibly thankful for my church and how they jumped in to support us after her passing. They sent food home with me on Shrove Tuesday, sent emails and cards with condolences for our family, and I got hugged within an inch of my life on Shrove Tuesday.

If I hadn’t given up blogging for Lent I would have told you… we got a last-minute appointment with a psychiatrist at the Autism Center. Daniel was badly-behaved (which is actually a benefit in this case) and the psych made the comment that until we improve his nutrition, none of the other meds he could prescribe would be of any benefit. So… he changed Daniel from his Adderall XR (which is also used as an appetite suppressant) to Concerta, and we’re titrating up on it. So far, the only change has been that kiddo is not sleeping well and is having what seems to be a worse time in the evenings until his evening meds kick in. He’s also waking up in the middle of the night or at 6 a.m., which is not making my life wonderful. We start the next highest dose this weekend, and I am praying like hell that it helps. Please send Starbucks.

If I hadn’t given up blogging for Lent I would have told you… my iron is back to normal (thank you, weekly bloodwork and a boatload of iron pills), but my clotting factors are funky. Shark Week (a.k.a. my period) hit me like a ton of bricks in March… and also happened during finals of course. An appointment was made with my ob/gyn to talk about a hysterectomy… and I missed it today because my body decided that tachycardia sounded like a good plan this morning. So… I get to wait until June to see her… which happens to be on the day I graduate and Daniel is off school. This month’s Shark Week happened during Holy Week, and it was not quite as bad as March, but still crappy. I see Hematology next Friday. Woo.

If I hadn’t given up blogging for Lent I would have told you… that this quarter started on April 9th and is kicking my butt. I am the only tutor in my department and I can’t work enough hours to meet all the need that exists at the moment because this is the quarter everyone seems to be taking QuickBooks. The book they’re using for it is crappy (I had it last year), and it’s especially crappy for my English language learners who are having to figure it out in their second or third language. I had to close my one-on-one schedule this week, and I’m still getting requests for tutoring that I’m having to turn away. (I also have a couple students who I have had to tell that I will help them once they stop mouthing off at me or trying to have an existential argument about the class material.) Additionally, my Document Production class is hateful at the moment. We are docked 10% of our grade per mistake on every assignment, and we don’t know from week to week if we’re going to get any of those points back because the website isn’t fabulous on correcting formatting. I’m sure it will be better next week as I know now where my mistakes are coming from and can avoid them, but it is stressing me out right now.

If I hadn’t given up blogging for Lent I would have told you… that I finally joined Phi Theta Kappa (my school’s honor society that I was invited to join in September 2017) in March. I’m going to have my induction ceremony in the next few weeks and I might have a lovely stole along with my honor cords when I graduate.

If I hadn’t given up blogging for Lent I would have told you… about Daniel’s sedated ABR on March 29 with the audiologist we like and our amazing anesthesiologist from his g-tube placement last August. It turns out that our favorite audiologist got an almost perfect result last July, and she adjusted his hearing aids accordingly after the procedure.

If I hadn’t given up blogging for Lent I would have told you… that the Lenten devotional booklet I put together for my church was highly complimented, and that having it go out over email turned out to be one of the best moves as it was easier for people to access. The project was actually a blessing as I was putting the finishing touches on it while Grandma was dying, and it gave me something into which I could pour my nervous energy.

If I hadn’t given up blogging for Lent I would have told you… that the French version of the Hail Mary sung by French Catholics outside of Notre Dame got stuck in my head. I largely avoided watching footage of it burning because I couldn’t deal with the sadness. (Also… what the actual [expletive], 45?!?!? Suggesting that French firefighters use an air tanker on the cathedral and that they should get on it is not an appropriate sentiment for a world leader to suggest while the symbol of a country’s faith is burning!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)

If I hadn’t given up blogging for Lent I would have told you… about the insight I had on Maundy Thursday about Jesus praying in the garden and how it means that God understands and is with me in those liminal times when I am scared about what is coming next. Seriously, it was amazing for my faith as was Stations of the Cross on Good Friday, where I got verklempt during the reading about the Pieta.

Last thing: Rachel Held Evans, my favorite author, is currently in a medically-induced coma while doctors try to figure out why her brain is experiencing constant seizures. She ended up in the hospital with a combination of flu and a UTI, and she had a severe allergic reaction to her antibiotics. This is distressing me greatly because she is very much me with a southern accent, and her books have been part of what kept my faith going for the last ten years as I dealt with times where I would go to church and want to be anywhere else but there. (This thankfully changed when I got away from Jon’s churches and went back to the Episcopal Church.) Updates on her health are here and a GoFundMe for her medical expenses here. Please keep her, her husband Dan, and their two kids in your prayers.

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.

7 Quick Takes: CPAP FAQ, Ranting at the School Nurse, and Other Merriment

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7 Quick Takes

— 1 —

Ranting at the school nurse. Lest this be added to the “reasons not to homeschool send your kids to public school EVER” list by my current troll reader, I enjoy a really good relationship with Daniel’s school overall, and this problem wouldn’t exist if the school district hadn’t cut the funding for school nurses to the point that they are covering 3 schools on average. (Teachers at this school nurse’s other campuses and at Daniel’s elementary school have explained that this individual is “special.”)

School Nurse,

For some odd reason, you couldn’t be bothered to actually get my young prince’s individual health plan written/signed in SEPTEMBER, so I now have to remind you again that the only information you need on his G-tube is DON’T [EXPLETIVE] TOUCH IT, per the request of the General Surgery nurses at Seattle Children’s Hospital because they don’t want the integrity of the stoma compromised. That sucker is being held in place by a water-filled balloon UNDER HIS SKIN, and it is not coming out without that bubble being drained or someone pulling pretty darn hard on it with needle-nosed pliers.

If it does for some odd reason fall out, CALL ME DIRECTLY ON MY CELL PHONE AT 867-5309 (not at the first random number you see) as my sweet babu will probably be in a buttload of pain (again, that thing is NOT falling out on its own) and there will probably be damage to the stoma that requires an ER visit to Seattle Children’s. If you can’t reach me, call my parents (whose numbers you have) and they will get in touch with me PDQ. Again, DON’T [EXPLETIVE] TOUCH MY CHILD’S G-TUBE OR YOU WILL BE IN DEEP FECES.

Snuggles,
jen

— 2 —

The back storyregarding the above take. Dumb@$$ School Nurse (“DSN” for short) decided to call the first number their eyes came upon, and it was my parents’ landline. (I live with them, so it’s the back-up number. However, EVERY piece of school paperwork contains the words “call Jen on her cell phone at 867-5309“, and DSN seems to be the only person who has ever ignored that.) Thankfully, I happened to be home, but DSN managed to get my dad first… who was not amused by some random person calling and asking seemingly personal information about my kid. DSN finally explained WHY he was calling, and Dad called me to the phone.

When I picked it up, DSN apologized for “upsetting my husband”.

…

I rolled my eyes and told him, in a voice dripping with saccharine, that the gruff gentleman who answered the phone was my FATHER, and that he was not amused to get a call from a strange person asking seemingly personal information about his grandson. When I got off the phone (after giving him a bunch of information that he ALREADY HAS in various documents and emails), I told Dad that DSN thought he was my husband. Thankfully, Dad found some humor in THAT, even if I was spitting fire at DSN’s idiocy.

/stomps off to fix the student health plan for my critter AGAIN

— 3 —

CPAP Take #1. Kelly (our hostess with the mostest) asked to see a selfie of me with the CPAP mask on, and I’m obliging because I live to make Kelly happy. 😀

CPAP selfie!

— 4 —

CPAP Take #2. Kelly asked to see my mask, so here it is along with the strapping on it that holds it to my face. (The white things in the bottom corners are the things that fasten the mask to the strapping, and they attach to the mask magnetically.) My nose rests on the top of the mask on top of a hole that allows me to breathe through it. Otherwise, I breathe through my mouth. I opted for the full-face mask instead of the nasal pillows (similar to a nasal cannula but with a fatter base) because I couldn’t breathe well with them in. (They force air into your nose, which works well if you’re a nose breather… which I am not.)

Not shown in the second picture (because I’m dangling the mask from) it is the clear tubing that feeds the hot air into the mask, so I took the third picture to show the mask tubing and how everything is connected. The whitish stuff attached to the mask is rubbery and flexible tubing, and it goes on top of my head. The greyish tubing is a little firmer and what brings the heated moist air pressure into the mask framework. Most masks have the greying tubing coming out of the front. Mine comes out of the tubing on the top of my head.(I apologize for the quality of the pics — I’m taking them on my webcam in not-great light because it’s late at night.) I sleep on my side usually with the greyish tubing trailing behind me. If I’m on my back, it comes out the top of the rubbery thing and trails off my pillow and to my right where my machine is.

CPAP Mask
CPAP Strapping
CPAP Mask Framework

— 5 —

CPAP Take #3. Kelly asked about my machine, so here are some pictures of it. (Our email conversations are FUN! We also both believe in educating people on scary health issues, so I’m happy to answer questions.) Mine is made by ResMed and adjusts the pressure going into my mask automatically. It also has a modem in it which sends data to a website that my doctor, my home health person, and probably the Illuminati can see. The rule is that I have to be using my CPAP for at least 4 hours a day in order for insurance to continue to pay for it (it’s usually 8 hours for me and up to 12 if I go back to sleep once Daniel is off to school).

Here are the front and back. (I blacked out any personally-identifying information.) The clear thing at the right side is a removable reservoir where I put distilled water to make the air moist. I clean it out and refill it every 2-3 days. The tubing that brings the air to my mask attaches in the back.

The front of the machine.
The back of the machine.

— 6 —

CPAP Take #4. Kelly asked what it feels like to have it on. It was a little weird at first, and I’m really glad they had me try out face masks in the hospital before they attached all the wires to me during my alien abduction sleep study so that I would know which one felt most comfortable for me. When I put it on, I breathe into it to start it (provided it’s plugged in) and it feels warm and moist around my face. It’s been good because using it forces me to breathe deeply, and that deep breathing helps me get sleepy quicker. I tend to sleep better and deeper, which helps with the daytime sleepiness.

It doesn’t make an annoying sound — it’s designed to be white noise. And yes, my little ball of black fury has investigated it and rolled his panther cub eyes because Mama bats him back from it every time he tries to eat the tubing. #housepantherproblems #meanmama #mustbiteallthethings

— 7 —

The Superb Owl. (Yes, that spelling was intentional.) I honestly don’t know who to root for this weekend. I can’t root for the Lambs Rams because they’re from LA, and I hate on southern California teams as a moral rule. I can’t root for the Patriots because I take great joy in seeing Tom Brady lose. (The 49’ers of the 1980’s and early 1990’s are the best football team in history, y’all. C/S.)

I’ll probably just go on SuperBowl.Com and watch the commercials or something. I mean, isn’t the Superb Owl is just fabulous commercials with annoying interludes of football and obnoxious Halftime entertainment? #stateyourunpopularopinion

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.