Category Archives: Parenting Kids with Special Needs

The Simple Woman’s Daybook: August 6, 2018

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For Today… August 6, 2018

Simple Woman's Daybook

Looking out my window… sunny. It’s in the 80’s and I’m in my dark room with the shades drawn to cool things down.

I am thinking… about Daniel’s G-tube surgery on Wednesday morning.

I am thankful… for my favorite vet happening to be at the clinic today for a staff meeting and crashing Minion’s appointment with my other favorite vet. It was wonderful watching Dr. Fischer feeding Greenies to my little demon one by one out of her hand while Dr. Matt examined him and did the shots. (I cannot say enough positive things about Chuckanut Valley Veterinary Clinic. They caught Jethro’s thyroid tumors in time to treat them, gave Homer another week of life, and love my little black monster so much that he has groupies when he comes in for vet visits.)

One of my favorite things… my black beast. I’ll miss him while I’m down at Seattle Children’s with Daniel.

I am wearing… jammies. Clothes today were a charcoal shirt from Old Navy (I have three) and jeans capris from Kohl’s. I have such a short inseam that my capris are more like clam diggers on me. #shortpeopleproblems

I am creating… a packing list for the hospital.

I am reading… Inspired: Slaying Giants, Walking on Water, and Loving the Bible Again by Rachel Held Evans

I am hoping… all goes well with Daniel’s surgery on Wednesday.

I am learning… all about G-tubes.

In my kitchen… I had a turkey florentine meatball from Haggen for dinner tonight.

In the school room… one month until school starts. Daniel can’t wait.

Post Script… the page for a US agent for International Pen Friends is here. I’ve been a member for close to 30 years and I cannot recommend them highly enough for anyone who wants to find their kids a pen pal or who wants to find one for themselves.

Shared Quote… “The Psalms are, in a sense, God’s way of holding space for us. They invite us to rejoice, wrestle, cry, complain, offer thanks, and shout obscenities before our Maker without self-consciousness and without fear.” ? Rachel Held Evans, Inspired: Slaying Giants, Walking on Water, and Loving the Bible Again

A moment from my day… One of my favorite choirs doing one of my favorite Bach pieces.

Hosted by The Simple Woman.

7 Quick Takes: G-Tube Prep Edition

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7 Quick Takes

— 1 —

G-tube take #1. We saw Daniel’s nutritionist on Monday. He had lost about 1 lb in the last two weeks, but that could also be as a result of clearing out some constipation. (Pleasant topic of conversation, I know.) It was a smaller drop than the last time so no immediate hospitalization, but it created more of an impetus to get moving on the G-tube. R will be doing his inpatient nutrition care, so at least I know part of my team already.

— 2 —

G-tube take #2. We met the anesthesiologist (love her!) and surgeon (really love her!) on Tuesday. We like both of them. The only problem: the surgeon wants him to be inpatient for a week prior to up his nutrition to give his incision a better chance of healing. That throws a wrench in my life, but not a huge one. I’m not taking any in-person classes this summer and I’ve lived on hospital units with this little monster before, so it’s doable. The only downside is missing Minion a whole lot because I obviously can’t take him with me.

— 3 —

G-tube take #3. Daniel’s gastroenterologist (Dr. No) called yesterday and wanted to admit him THAT AFTERNOON. My response: “No.” When I was questioned as to why I would question her ruling, I explained that I had a doctor’s appointment today (Thursday) that I had been waiting for 6 months and that would impact my ability to function if I didn’t keep it. Dr. No also explained that they would be starting out with him doing nutrition by N-G tube, which is just about the stupidest idea on the planet… which has been pointed out by me, the physician assistant working with Dr. No, Daniel’s nutritionist R, Daniel’s surgeon, Daniel’s regular pediatrician, and just about anybody who has spent more than 15 minutes with him on a meh day.

I may or may not have excavated a new rear sphincter opening for her during our final conversation yesterday (yes, there were several — I don’t think she likes me right now and I couldn’t care less), at which point I **FINALLY** found out that he’ll be admitted on Saturday afternoon and where I get to go for this. (Seattle Children’s is YUGE… bigly even!) She also told me that they *sigh* will have a back-up plan (a PICC line) and enumerated the risks of said plan. (While she was pontificating, I was rolling my eyes so hard at the phone that they fell into the floor of my car because I am familiar with PICC lines… especially since my kid HAD ONE FOR TWO MONTHS in the NICU and my former father-in-law had one for several years.)

I should point out that Dr. No is not incompetent — she’s quite brilliant — but she doesn’t quite get autism well and doesn’t understand that my child is more of a cranky 3-4 year old than a 9 year old, so he isn’t going to be cooperative and leave his N-G tube alone.

— 4 —

MY appointment. I finally got my neurology consult today and it was… intense. My neurologist is lovely (though very high energy and intense) and gave me credit for having a mind (yay!). She’s doubling my migraine preventative, sending me to sleep medicine (I very likely have sleep apnea), putting me on magnesium, and a few other things. My only criticism is that she told me that my stress level would improve if I meditated… which makes me stabby because my stress level would improve if I wasn’t largely managing my medically interesting kiddo with special needs on my own while also trying to finish my degree and be a functional adult.

— 5 —

Duuuuuuude… I just got the news that my dear friend Richard has been elected as Moderator of the United Church of Canada. Having known him for 16 years through blogging, I can honestly say that there is no better person for the job. Congrats, my friend. I am so incredibly proud of you.

— 6 —

Huh. Does anyone else remember all the McDonaldLand commercials? There were toys too apparently.

— 7 —

My earworm. I’m feeling like Armenian choral music today.

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

7 Quick Takes: Cat on a Window Screen Edition

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7 Quick Takes

— 1 —

Let the blogger cage fight begin! Bonnie is doing the Sheenazing Awards again this year after a hiatus of several years and is taking nominations until July 21st.

— 2 —

Sigh… I learned a new thing last night: my window screen cannot sustain the weight of a 4 lb kitten. *glares at Minion*

— 3 —

This explains a lot. Arabic has been irritating me and this is probably why. I’m also not loving Memrise so I will probably wait until the course on Duolingo is done being developed.

— 4 —

WANT! Mint chocolate is one of my weaknesses, so these are on my WANT(!!!) List.

— 5 —

Daniel update. His upper G-I x-ray came back normal so next on the agenda will be the nutrition appointment on the 23rd and surgeon consult/pre-anesthesia appointment on the 24th.

— 6 —

For historical clothing lovers… I recommend this YouTube playlist.

— 7 —

Whoa. This is amazing.

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

7 Quick Takes: Disordered Eating Edition

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7 Quick Takes

— 1 —

Music take #1. This song came on randomly while I was doing my Word II homework in one of the computer labs on Tuesday.

— 2 —

Music take #2. Loreena McKennitt’s newest album came out this month and it is excellent. I’ve listened to it while working on homework and we listened to it on the way down to Seattle Children’s yesterday.

A song for this weekend:

— 3 —

Background on yesterday. Since getting hooked up with the Autism Center at Seattle Children’s Hospital last year, we’ve been able to get referrals to specialists at Seattle Children’s outpatient clinics and one of those is gastroenterology. Long story short, the gastroenterologist we saw was concerned about Daniel’s weight and when he lost a pound between appointments (possibly due to solving a constipation problem), she had kittens. We already had an appointment with the gastroenterology department’s nutrition staff for last Friday, so she ordered bloodwork to go with it.

We went down there last Friday (the 18th), got blood taken (OMG… THEIR PHLEBOTOMY TEAM IS AWESOME!!!!), and met with a wonderful nutritionist… who gave us a week to get kiddo up to 2000 calories per day (at least) or we would be talking about a feeding tube. They gave us samples of a couple different calorie-dense formulas and Daniel chose to bulk up with four boxes a day of this one after we tried him on all of them. (He wouldn’t touch Pediasure at all, even the chocolate flavor.) We’ve also been giving him extra peanut butter and adding heavy whipping cream to his milk.

— 4 —

So about yesterday… We had an 8:30 appointment with Seattle Children’s yesterday morning (which meant leaving at 6:30 a.m. because traffic from where we live north of Seattle to the hospital in the U District is hideous) and they were good with his weight gain. We see them again in two weeks and I’ll be scheduling a weight check with his doctor this coming week to check in with her about all of this.

I also get to chase a referral for feeding therapy. Woohoo.

— 5 —

For those who will inevitably ask if all of this could have been prevented… The answer is “we don’t know”. One thing we probably should have done is the high-risk infant screening through Benefis when he was six months old. The problem: Jon was about to lose his parish in Montana and we were traveling all over the place trying to find another call for him. We were also 2 hours from Great Falls and would have had a heck of a time doing feeding therapy there, depending on how often we had to be down there because of our work schedules and having to share a car.

We did have him followed at UC Davis and through Easter Seals and our local Regional Center in northern California, but he got pickier in his eating as he got older.

Another problem: we’ve moved 5 times since he was born and have had to start over with the acquiring of specialists each time. We’re staying put long-term so we should hopefully be able to nip this in the bud right now.

— 6 —

For those wondering what is causing this… Preemies, particularly those who have had to be on ventilators, are notorious for having texture issues. Add in sensory issues from autism and you have a fun situation.

— 7 —

My current ear worm. Enjoy y’all!

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

7 Quick Takes: Triennial IEP Edition

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7 Quick Takes

— 1 —

“Standing in the rain.” I spent yesterday morning standing in the rain to support middle school kids in their walkout. Details are here.

— 2 —

Attending a birth. Someone sent this letter to Dear Prudence and asked her to arbitrate in a situation between a mother-in-law and her daughter-in-law, in which the mother-in-law is butthurt that her daughter-in-law doesn’t want her in the room while she’s giving birth. However, her own mother is permitted in there and the mother-in-law is crying that this is *SOOOOOOOOOO* unfair that she’s being made a “second-class grandma”, even going so far as to call her daughter-in-law’s parents to make them badger their daughter into changing her mind. The son and daughter-in-law (as well as the daughter-in-law’s parents) are furious with her and she can’t figure out what she did wrong.

Prudence excoriated her (quite rightfully) for being an entitled shrew because childbirth is not a spectator sport. Someone decided to do a running Twitter commentary on the issue and then George Takei picked it up. Let’s just say that Uncle George’s fan base was not siding in favor of the mother-in-law and excoriating the misguided people who attempted (badly) to argue in her favor.

So, for the sake of any readers of this blog who might argue in favor of the mother-in-law, let me put this in words you might be able to understand: Childbirth is a private medical procedure. It is a part of life, but not one which many people want to share with their mother-in-laws, women who didn’t freaking *RAISE* them and take care of them when they were sick. If you decide to make this a hill to die on, prepare to lose a relationship with your daughter-in-law, your future grandchild (your daughter-in-law is not stupid enough to let your son take her child to see you), and likely your son because you will have demonstrated that you have no intention of respecting the parents’ boundaries for their family, especially their children.

Capeche?

— 3 —

Tickling my funny bone. I know this is clickbait, but it’s funny clickbait.

— 4 —

Triennial IEP meeting. To be compliant with IDEA, the school must do testing every three years to make sure that special education is still appropriate. This year, I discovered that someone had put the wrong date in the computer as to when Daniel was due for his triennial evaluation and this meant that we had to pull everything together in a very short period of time. Thankfully, Daniel has an amazing IEP team and we made it. The meeting was Wednesday and while it was painful in some ways, there was positive progress and we have good IEP goals for next year. His gross motor skills have also improved enough that he is being discharged from physical therapy, which is definitely a positive step.

— 5 —

If you’re interested… March for Our Lives is a march dedicated to talking about gun violence and sensible gun control. (**NOTE** Sensible gun control does not mean that we are taking away everyone’s weapons, but rather discussing appropriate legal regulations that would allow people to own their weapons, but do a better job of keeping them from falling into the wrong hands. I want to make this abundantly clear.)

If you’d like to attend a local one or find out more information click here. There are marches being held on March 24th on 6 continents, which I find pretty amazing. If this is not of interest, feel free to ignore it. 🙂

— 6 —

Lenten meal ideas. Need some vegetarian/vegan meal ideas for the next two weeks? Click here.

— 7 —

Duuuuude… The results of the astronaut twin study with Scott and Mark Kelly are out and apparently, long-term space missions can alter our DNA.

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

7 Quick Takes: Active Shooter Drill Edition

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7 Quick Takes

Yes, my Quick Takes are late. I had homework due tonight for Excel/Access.

— 1 —

Active shooter drill. We had an active shooter drill during my Excel/Access class today. It’s in a computer lab so we had to turn off all of the monitors in addition to flipping the lights, drawing the blinds, and locking the door. This made for a dark room (which was kind of the point) and I had to code something, so we were using my cell phone as a flashlight because an actual flashlight would have been too bright.

A message also flashes onto all of the screens in the event of an active shooter (in addition to sirens going off and an automated message playing over the loudspeakers) so it’s inconceivable that someone wouldn’t know unless they were both blind and deaf.

— 2 —

Shelter-in-place drill. My school does a shelter-in-place drill quarterly and today’s happened to be an active shooter drill specifically because of the school shooting in Florida on Valentine’s Day. They take these drills very seriously and it paid off during Fall Quarter when they had to lockdown campus for a manhunt.

I find them unnerving (and today was only the second time I’ve been on campus for one), but they’re necessary these days given the fact that our government is in the pocket of the NRA and will not pass commonsense gun control legislation. (Gun control does not equal taking all of people’s guns away, contrary to what some on the rightmost fringe of the political spectrum might think.) Each instructor also has a very clear plan for what needs to happen in each classroom where they teach, and my Practical Accounting instructor admitted to spending her commute coming up with plans for these situations.

— 3 —

Book recommendation. A seminary classmate of mine wrote a book. Go check it out because she is freaking awesome. Seriously. Do it now.

— 4 —

Speaking of books… Fr. Greg Boyle, S.J. has a new one out. It is now on my wish list.

— 5 —

Must print this out to hand to people. My instructor jokes about all of us standing in the back of the room shotgunning our coffee before class. I need to print this (and a few other coffee memes) out for her.

Personning is hard without caffeine.

— 6 —

Mea culpa. Why no! This one totally doesn’t describe my morning! Never!

Mea culpa.

— 7 —

I need to put this on my door. It really was THAT kind of morning here…

RUN!

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

The Simple Woman’s Daybook: February 26, 2018

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For Today… February 26, 2018

Simple Woman's Daybook

Looking out my window… dark. It was cold this morning but was shirt-sleeves weather this afternoon.

I am thinking… my challenge test for Business English on Wednesday and the 7th anniversary of this on Thursday. I’m more than a little weepy about the latter.

I am thankful… for the people in my life who are praying me through this week.

One of my favorite things… this Facebook page.

I am wearing… jammies. Clothes for today were a grey heather shirt and jeans.

I am creating… forms in Access.

I am listening to… some Michael W. Smith.

I am hoping… I end up with a good group for my Access in-class project.

I am learning… how to do fun things with forms.

In my kitchen… Dad made steak last night.

In the school room… we’re trying to put together a triennial IEP in a matter of weeks instead of months.

Post Script… an amazing article by Emma González, one of the Parkland shooting survivors who is speaking out.

Shared Quote… “We are children who are being expected to act like adults, while the adults are proving themselves to behave like children.” — Emma González

Hosted by The Simple Woman.