Sick Day

Our Spring weather has been flip-flopping between 30s in the mornings, rain, and sunny highs of 84º. Last night I awoke to hear James coughing and sniffling. This morning it's more pronounced. While he did not have a fever (amazing how, with a little practice) a quick hand to the forehead can accurately gauge this, I called him in sick to school and ABA.

One last task for this afternoon/evening - a COVID-19 test. It's always a good idea to be safe. Also, if he does test positive, I need to notify his school and ABA. I really hope it's a negative test - otherwise, there goes my week. Fingers crossed that all our vaccines and boosters are doing their jobs.

ETA: Results are negative!

The Power of Pizza

 Picky Eating, Pizza to the Rescue

James and his sister were picky eaters as kids. Both of them eschew sauces, condiments, and mixing of anything except milk with ice cream - with super powers that always detected instantly any added powders or pureed vegetables. James went through a period of refusing to eat. 

For many years, he enjoyed a fairly stable palate of pancakes, blueberry muffins, or waffles for breakfast. Lunch was typically a peanut butter and jelly sandwich on whole wheat bread. Dinner: chicken nuggets, with apple slices and fries. He ate simple animal cookies and yogurt squeeze-ups for snacks. Occasionally I could get him to eat a banana or pizza. He drank water, milk, and apple juice. There were occasions where we got him to nibble on a carrot or broccoli. 

The life changed, and kept changing ... and not in a good way. By the time we entered lockdown, James was down to cinnamon bread and milk for breakfast and pizza for everything else. He still drank milk and water, and a little apple juice. Then he got picky about pizza - luckily preferring items with low sodium, seasonings, and processing.

In less than 4 years he grew a good 7 inches. Thank goodness for pizza. I was able to get him back to eating blueberry waffles and croissants. He developed a taste for garlic cheese bread. We are working on adding quesadillas with whole wheat, carb-savvy tortillas, pear slices, and some peanut butter on whole wheat bread or apples.

Despite good intentions, often I am exhausted at the end of the day. It is good to have a somewhat healthy option that I know will work. Fast, packable for lunches and trips, and easily found - pizza is our dietary go-to. 

Lalalalala - Healthcare Type

So, I've known for a while that I cannot die while James is alive (the autism parent joking / not joking meme).

Now, looking at the copays and rises in healthcare coverage for the coming year, I realize I cannot be sick or go to the doctor, either. 

Which is a shame, because that could bring on a panic attack if I think too hard on that one. 

Cue the lalalala's, which are cheaper than Prozac ....

Dental, the OR Way

So, oral hygiene and James do not get along. I am not good at getting him on track, because, well, life. Divorce, move, evacuation, deaths in the family, topped with a Really Horrible 18 months of school equals a LOT of dental work, including a back molar that James attacked after being hounded at his new school by one of its top administrators.

I know the drill by now. Talk about impending procedure with James, but not too much. Hide nothing. Remain calm. Be positive and encouraging. Don't think about the aftermath. Lalalalalalalala.

This morning I was up at 4:30. We were on the road about 5:30 and watched the sun rise over the wine country and big city commute traffic back up in the other direction. Checked in at 7:00 and got banded. Called back to pre-op about 8:10.

There we did the change to gown and four sets of review of Med History, surgery goals, and anesthesia plans while he was taped up for O2 saturation and heart monitoring. This staff is good. James downed two oral meds and opted to have the IV inserted while he was awake. It could not have gone more smoothly.

I walked him down to surgery. He was scrolling on the nurse's phone to find a YouTube video to listen to as they wheeled him into the OR room. That was at 10:10. It's 11:40. I have had breakfast, answered emails, and am settling down to wait. I figure I have another 45 minutes to go. I'll keep watching the OR board and think positive.

And: I have registration paperwork to fill out. A better school for James is coming. So thankful for that!

Sports Challenge

James needs more regular exercise. He has low muscle tone to begin with. His extreme weight loss last year has made his already skinny frame more frail. He is also growing like a weed.

Because James is happiest in a familiar environment that is quiet, and happiest yet when online, incorporating physical activities are tough.

At school, James will use a foam football to interact with other kids and toss the ball around. His adaptive PE coach has been super encouraging him to jump rope with others and his regular PE class had a great week of bikes. James' sister takes him on walks around our neighbourhood or to a local park. I try to take James with me on weekly grocery shopping runs and swim play sessions at the pool.

James's Dad gets him out to parks and took him to the always fantastic Wonder League baseball program. This year saw some wonderful changes to the program, including earlier start times, warm up practice, and great groups of Buddies for all the players. While James was reluctant to play at times, he loved the attention. He started switch hitting and running after grounders. He actually started to hit pitches near the end of the season, and the week cheer section showed up, he ate up his personal rooting section as he rounded third base.

I wish we could find a local, affordable sports activity for him that he would enjoy. It's always good to have options outside the Xbox.

A Little Sniffling, A Lot of Shuffling

After an amazingly good stretch of health, James is down with a cold. Not too bad, but we can't run on a full schedule.

The last SF appointment has been rescheduled and there will be no social speech skills  after school program today. His behavioural observation had to be cancelled because he stayed home one day this week.

We are continuing the nutritionist appointment though, because he's still not out of the woods yet with this whole food in/food out thing. He is eating more of his formerly normal foods and we had two successes in the home bathroom so far this week.

James is also talking more and asking us questions. True, a lot center around when a desired DVD will arrive in the mail, as well as checking to make sure we know everything about said DVD, but sometimes now he will ask us "why?" because he really wants more information about things we are discussing.

All slow, good progress, despite what it does to our calendars.

On the Road for Answers

We're back in SF again, waiting for our much-anticipated appointment for the biofeedback clinic at CPMC.

Guess where we're hanging out?

It's something of an adventure and much more relaxed this time around. For one thing: James can eat and is not facing a medical procedure. For another, over the past week, James has had some success eating and producing BMs on his own.

Because we both hate traffic, and have committments in the afternoon (work for me, a local appointment with a dietician for James), we got up very early and were on the road shortly after 5:30am. We hit some traffic, but not too much, and used the heck out of the carpool lane -- yes!

We watched the moon set over the Pacific, just north of Land's End. There was a moon path over the waters. Gulls and sparrows fluttered and flew over the sea and sands. We saw a parked school bus in the lot again. Then we headed up to the Legion of Honour, and watched the sun rise. Gorgeous.

Now we're almost ready to head out. James already drank his milk and ate a croissant and cookies. He is so much more lively than our last trip a month back.

We still have a way to go. I can take days like these though. Hoping for good things!

New Year's Goals

Time to set some goals for the coming year 2015:

1. James needs to eat more to gain weight. Currently he is pushing 4' 11" and we're struggling to keep him above 60 pounds. He was 87 pounds last August. Not sure why he's decided food is evil. We have ruled out Celiac Disease and throat/stomach/upper bowel issues with an endoscopy. Which made James even more determined to Never Eat Again. Sigh.
       
2. Help James become more "regular." We're going to be trying biofeedback for that. In San Francisco at a Lucille Packard clinic once a week for the next 12 weeks. I'd say "shoot me now" but the truth is ... we are desperate for help with this.
        
3. Get James' speech back on track at school. It's pretty much not been happening over the past 2 months. Not happy about that at all. He needs help speaking. It's in his IEP.
   
4. Get Behaviourist help going. We're finally approved and not having to worry about hundreds of dollars in copays. We've started the intake merry-go-round. We need to finish it AND start the sessions!
   

                          Goals on a more normal level ...

       
5. Have James' birthday party BEFORE Easter this year. Bowling alley sounds good!
        
6. Send Thank You cards for Christmas this year (meaning for Christmas 2014 by the end of January). I know we all can do it. We should do it. We will do it!
         
7. Try to add Saturday Sidekicks back into our routine. That is one awesome program!
        
8. Breathe. Believe. Do.

At the OR

Waiting is awful, when you are outside the OR. Even for minor procedures, such as the one James is undergoing right now, it is tough on the psyche. I hold his hand and smile, and try to not think of anything that could go wrong. We've sliced fruit, ninja-style. We've watched PBS kid programs. I helped him take his meds, hold the mask, and now I am waiting. Watching his number on a board and waiting for it to change from blue to pink, so I can sit by him in recovery.

Constipation Constrictions, Encore

This latest all-stop constipation episode has been coming on gradually, in spite of my upping his morning Miralax dose in milk. He's stopped eating regular meals and claims he hates food. He wants a new James. The yammying and not feeling good have been taking a toll on James and the rest of us. Getting him out of the house is a trial and involves extreme, loud melt downs that are not typical for James.

Good news is that it's not as excruciating as other occurrences. Bad news is that his bowels are plugged with matter and air and he's good only while at home. So I have been looking up home remedies. So far I've tried adding probiotics to his yogurts, trying to get him to drink more water and less milk (which is always now spiked with at least a little Miralax. Tonight I added some Magnesium Citrate to his apple juice and he actually ate half a pb&j on whole wheat bread with plum jam. The pharmacy in town gave us some lotion that contains magnesium - I rubbed some on his tummy.

Next up: adding baking soda to some water -- supposed to be good for clearing air out of the system. He'll be out tomorrow from school and his doctor is supposed to call back with results from the epically screamy blood draw last Friday. Hopefully there will not be anything new to contend with.

Sunny and Bright

Well, Friday was better, but still had issues. Many were the emails that crossed between the doctor and I. Aside: I like that you can attach files or photos in the messaging system to our pediatrician. Very handy for rashes and showing messy things that should not be brought into a doctor's office.  Friday and Saturday nights, however, were excellent-- full night's sleep for everyone and no more moaning! OMG, the constant moaning does us all in.

Saturday, James was back to eating regular foods. Not his regular amount, but hey, he ate it with relish and it all stayed down. Then came the mystery BM in the afternoon. Neither kid owned up to producing it. After a lengthy parental CSI debate, my husband and I deduced it belonged to James. Hooray!

James was back to jumping on the trampoline and doing more than lying on the sofa with his iPad. I even took him to the gym with me so he could play in Kids' Klub while I worked out, and was told he had a good time. He asked to have his sister's kitten come out and seemed to enjoy the kitten mayhem that ensued.

Today, he is very affectionate, hugging me and having conversations. As I type this, he's doing math and spelling with me on his Magnadoodle. I have noticed that James is talking now, and not largely stimming or asking the same question repeatedly. It's like someone took a lid off and we can see the person inside and interact more with him.  He is being funny on purpose, calling Jack Skellington "Jack Frosting" and renaming challah bread "jolly bread." He's making quiet but thoughtful remarks and requests. We even played together building Leggos, which he's never done before, despite encouragement. More on that tomorrow.

Where Is the Evidence for Autism Patient Care?

Paul Corby

I have been seeing posts around the blogosphere recently about Paul Corby, a young man with a congenital and deadly heart defect, who has been denied a heart transplant. There is a short list of reasons for denial, and number 2 on the list is ... Autism (link to story).

Quite frankly, I don't understand this. Why would Autism be considered a medical reason to deny a life-saving procedure? The rejection letter (that has been posted) provides absolutely no details or references scientific evidence why Autism is a contraindication for a major organ transplant.

A contraindication, by the way, is a condition or factor that may increase the risks of a medical procedure. Contraindications are absolute (as with proven dangerous results) or relative (where the results of the procedure are usually too complicated by said condition to be truly effective). I can't find a definition of all this quickly, by the way, I had too look through dictionary websites and a quick Google search with "Autism as a Contraindication" filter.

The closest thing I could find in my quickie online search was that some medicines used to treat anxiety and aggression are contraindicated in Autism patients with heart conditions (link to source).

So, without knowing all the facts, and being Jane Public (mom of a child on the spectrum), I am left with the impression that the doctors really don't know how Mr. Corby's Autism would impact the effectiveness of a heart transplant. They list instead complications of the complex procedures (which, I am pretty certain all heart transplant patients face) and "unknown and unpredicatable effects" of steroids on Mr. Corby.  Well, not being able to pump 80% of your heat's blood back out into your body is kind of a huge complication already and it predictably leads to reduced quality of life and a very short life span.

It sounds to me as though they'd rather not deal with all those unknown issues and complications.

It reminds me of hearing about how doctors initially recommended hospice instead of surgery for my grandmother, who at age 80, had a pretty advanced case of colon cancer. Part of their recommendation was tied to her age, and their experience that older patients in her stage either did not survive the operation or did not live long after.  They did, however, listen to her family and agree to try the surgery. Well, by day 2, that lady was walking the floor with her IV pole, doing laps. She had contests with her adult grandchildren to see who could blow her balls higher in her Mediciser and joking with the nurses. The surgeons later told the family she changed their perception of elder care and surgery recommendations.

It reminds me of how I've had to advocate for my son several times in a medical environment - precisely because (1) there is so little evidence out there on how to diagnose and treat patient on the Autism Spectrum and (2) Autism presents so uniquely.

We don't know much about Autism -- it's causes and effects on our lives. Many of us have had incomplete or incorrect medical recommendations for ourselves or loved ones. The only way to prepare our medical communities for the coming wave of diagnosed adults on the Autism spectrum is to start creating Evidence-Based Medical Practices and Guidelines for Autism patients NOW.

If you want to do more, there is an online petition being circulated online to Penn Cardiac Care at Radnor to put Mr. Corby on their transplant list -- please review and sign if you support this cause.

If you are an Autism parent -- keep advocating! Get second opinions. Support each other and help our communities to, in turn, support our kids on the spectrum. My thoughts and prayers are with Paul Corby and his family. I can only imagine the frustration and stress they must be going through. It is my hope that he and his family receive the services needed at either the Mayo Clinic, where they are seeking a second opinion, or Penn Cardiac Care.

(Thanks to Shelley at unlocking doors for her informative post on this.)

Magic Marker Monday: Warming a Room

My Dad suffered a setback and went back to the hospital. He's now in another rehab facility to get his strength back to the point where he can stand back up again and help transfer himself from his bed, wheelchair, etc. He's working back to using a walker.

Not only is it very discouraging for him, it's also hard on all our spirits. He's going to be there over Thanksgiving, which is a family holiday that my folks love to host.

The staff try hard and the facility is just about as good as it can be for our price range/health care options. Still, it is so not home.

 James, his sister, and cousins have been doing their best to warm up the place. Luckily, the staff are more than willing to share their paper and markers!

For more meaningful artwork, or to share some of your own,
visit 5 Minutes for Special Needs for more Magic Marker Monday.
(yes, I know it's out of order this week -- so is our life!)

                  

Changeable As ...

James has been having a tough week. Focusing, staying on task, and transitioning are not going as well as they usually do. He gets upset more easily. I hear him at night, more restless than usual. His nose is running and he has a cough, but no fever -- allergies? Could be -- there are vineyards on back of us, and they are busy trying to get in the crop (VERY early in the morning) after another weird summer. He is definitely more fretful than usual.

Then I looked through my camera pics over the past week and saw something else - extreme weather swings. Last week we experienced 100∘in dry heat. This is very uncomfortable for James, who runs hot in general. He literally melts down in hot temps. We made a couple of runs to the frozen yogurt place we love so much, just to feel a bit better after school. The extremes from going between a playground that melts him into the cool, air-conditioned classroom and home can't be healthy.

We had a low-pressure rain system mosey on through over last weekend, dropping temps and some precipitation. Come Monday, we were back up into the 90s with a little humidity. The grape harvest behind us swing into high gear, kicking up dust and who knows what else. Then they fertilized with something natural, or it got so hot we could smell the stables from down the lane in back of us -- either way,  it didn't smell too purdy. James had fun trying out all the shorts his cousin just handed him down. He started complaining his throat hurt as his nose ran more.

This morning, he picked out a really loud (but cheerful) pair of blue-and-green plaid shorts. This is what we saw when we looked outside:

From talking with other Moms and reading their online posts, it seems as though the weather can affect childrens' behaviour -- especially if they have sensitivity issues. Research studies do not back this up, but that doesn't stop me from thinking that there really might be a connection. I've come to view scientific discoveries as a work-in-progress ... but I digress.

We have a birthday party to attend this weekend, but then I think we're taking it easy. Happy fin de semana, regardless of the weather!

Back on Our Feet, And How!

Well, we've had 4-6 weeks of cold and flu cycling around. Almost sinister in that at first it seems a straightforward illness. Then it comes back. And if you don't watch it, the patient worsens. Went through this first with James' sister, then with James. She had the flu bug really badly, he got the cold and sinus infection in round 2.

If that was not enough, we had to deal with James' IEP and his triannual IEP. That will be a whole post in itself. Suffice to say it was a rude wake-up call and not very fun to hear. And there was so much good stuff in there too!

Lest we dwell in the alleys of downer stuff too long, another big milestone has been achieved: just yesterday, James had a bowel movement while using the toilet -- his first!!! And it was a healthy specimen. He tried again today, but sis not have anything to show for his efforts.

I was starting to worry about James' language skills regressing while he was sick and then down with a very sore throat. Not to worry, he and his sister were talking up a storm all afternoon long as they played together.

Here they are, playing at the local McDnald's. They said they were playing snakes.


Hmmmm. I am wondering if this is where he picked up his bug. James has a bad habit of wiping his nose with his palm & fingers, then licking the palm & rubbing some more. Yuck! I have been trying to break this habit by applying hand cleaner to his hands. I know that stuff tastes nasty.

Better! And Need to Know?

After three days of yamminess and really not feeling well, James is better!

He had his first day of preschool school and SHAPE this week. I am so happy to see him back to bouncy and sunny. It was a bit hard, trying to explain to the advice nurse and doctor why I couldn't ask James where it hurt. I never know what lights up in peoples' heads once I mention that he's on the autistic spectrum.

I had to ask the doctor to put his diagnosis in his medical records, as the advice nurse said it never showed up in what she had access to. That felt weird. I usually say that James has language delays and leave it at that. Is it really that necessary to have medical practitioners know that James is on the autistic spectrum? Has anyone else found it to actually be helpful?