Tiny Salutations

Tiny Salutations

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Thursday, August 27, 2015

A letter to Felicia Day

Felicia Day, 

First of all,  I hope you read this.  I went to your book signing tour last night in Seattle, and I felt compelled to tell you how important it was to me.

I am a fan, obviously, as everyone else there was.  That in itself makes it special.  For me, though, it was so much more than being an excited fan.  It was my chance to feel like a person for one night.

It's my story behind getting there that makes it more special.  Last night was the first night in a week and a half that I was able to get out of bed, other than taking my son to Children's Hospital for a surgery consult.  Bigger than that, it was the first time in about a year and a half that I was able to do something alone.  Being in a wheelchair alone is tough.  I get stuck a lot, it is incredibly hard to use the restroom alone, it's hard to reach pretty much everything, and if I have an emergency, how will someone know what I need?  My husband is always with me, and if he can't be, then I don't go.  He was supposed to go with me, but a book tour that late at night in Seattle is no place for my three year old (trust me, it would not have gone well).  Since my son also has intense medical needs, we couldn't find anyone else to watch him.  I thought about not going, but it felt important to me... and I'm so glad I went.  I was very anxious.  I had a stomach ache before going inside.  If I needed help, I would be two hours away from someone who knew what to do.  It's just not simple, even though I'm in my twenties, to get up and go somewhere.  Additionally, the night before I had stayed awake all night crying in pain, fervently praying to God to take me.  I had taken all of the pain medicine I could, and it still felt like someone was prying open my rib cage.  I was having trouble breathing on my own, had a fever, was exhausted, and unable to stand or move on my own.  By the time I got home after the book tour, it was worse.  I had to try hard to stay awake on the drive home to make sure I kept breathing, and once home, my machine hard to work hard to keep my airway open, but I was very happy, my signed book on my nightstand.

My signed copy of Felicia Day's new book finding its place on my nightstand among the piles of medical equipment 


This was my first time in the last year and a half that I was alone.  The first time I was independent.  No one accompanying me, nor waiting just outside.  Yes, it's true I got stuck downhill by the front door and a very nice staff gentleman had to come help me back uphill and into the building.  And another time, I needed extra help to find a restroom that I could fit into after getting myself stuck in the doorway of the women's room.  But, I didn't feel like a burden, or a mass of adaptive equipment, or the subject of disapproving glares.  I was just a fan, like everyone else, only sitting down.

When I came up to the table for you to sign my book, you asked why I had waited in line.  I had heard you say that people with small kids or disabilities could go to the front of the line.  Someone even came to check on me and ask if I would like to cut to the front after I had waited about an hour.  I can't drive myself and had told my husband to come back to pick me up at the end.  So I had time to wait.  And it actually felt nice to wait.  I waited, just like everyone else waited.  Don't get me wrong, I thought about it.  Normally by that time in the evening I would be hooked up a machine that helps me breathe for the rest of the night.  And I could feel it.  I was not breathing too well, weak, and had a fever, but if it came down to it, I could still go to the front of the line.  I made it though.  I waited until my turn.  And it felt like an accomplishment in a life that feels like I'm constantly fall short. 

I look up to you.  If I had not gotten sick, I think I would be a lot like you.  Before I was sick, I went after everything I wanted, and usually succeeded, regardless of how much I knew prior to going headstrong into it.  I, too, went to college when I was 16.  I ended up with a Master's degree in biology at age 23.  I've been socially awkward, especially growing up, and wholeheartedly agree with your message to "embrace your weird".  I love nearly all things strange, and although I don't normally man the controller, I play games with my husband by taking charge of the storyline while he gets us through the fight scenes and 'button pushing'.  During your interview at the book tour, you said that everyone should have that thing in their life that makes them feel like they are doing something meaningful.  I have struggled with that.  I start things with good intentions, only to soon realize that doing anything past just getting through the day if often unattainable.  I'm still looking for my niche, but often find that feeling here, at my small blog where I hope to make others with disabilities feel a little less alone.

At the signing table, I also thanked you for helping to raise funds for the Lupus Foundation of America.  Lupus is one of the five autoimmune diseases I have been diagnosed with and is part of why I am in a wheelchair, so sick, and why my son was born at one tiny pound.  The Lupus Foundation raises money for research to find a cure, which is very important, but I think far more important is raising awareness.  Putting your adorable face behind that message is a wonderful way to get this message to many more people that wouldn't have otherwise heard it.  You also said we should meet again sometime, which I won't hold you to, but I wouldn't object to *wink*.

Felicia Day and me! (the little voice in my head begging me not to run over her feet)

So this is a very windy thank you.  Thank you for being weird.  Thank you for telling other people it's okay to be weird.  Thank you for helping people with lupus.  Thank you for being passionate and real.  Thank you for the chance to meet you and get a hug, something I didn't even think was reasonable to write on my bucket list.  Thank you for making this book tour feel important enough to take a chance.  Thank you most for giving me the chance to feel like a real, independent person for a night.  Thank you.
Felicia Day's book tour

For everyone reading this that does not know who Felicia Day is, you should.  You can find her at her website  or her new book You're Never Weird on the Internet (Almost)


Felicia Day's book tour interview

Felicia Day's book tour

Felicia Day's book tour interview- in the University church sanctuary with pretty awesome stained glass windows



Wednesday, August 26, 2015

Travelling with kids on a shoestring budget

Traveling advice for the family just in time for labor day weekend!

Also, since many of my posts are not particularly happy- our health updates often being negative and sometimes intense- I wanted to share some happy posts.

Driving into the sunshine
So if you have read my blog posts from this summer, you know that travelling did not go quite as I had envisioned.  I think that it did not go as smoothly as planned for a few reasons.  First, we were travelling, but not really vacationing.  We still had to make doctors appointments all over the place nearly every weekday, many of them 4 hours away from the one the day before.  If we had no appointments to make, we could have chosen places that were easier to camp at and not change our camp location every day.  Second, we were moving.  This, to me, seemed like something that was good timing and may have been so if it was just my husband and me.  But no.  Layne was so upset about moving and changing everything at once that he shut down and just couldn't handle it.  He has a very difficult time sleeping in a new environment, our truck conversion being no different.  This has worn on us a lot, even in our new home after being here for a month and a half, as he is still not sleeping.  Some days he would simply get only two hours of sleep, so my husband and I too only got two hours of sleep.  All in a matter of days, we stopped going to physical therapy (with a therapist that he was pretty attached to), started several new daily medical routines, left our house and all familiar surroundings and routines.  Too much for a little boy with autism, sensory processing disorder, and somewhat intense medical needs. 

Does that mean everything was a failure?  No!  Did we have some fun?  Yes! 

As a teenager, I used to travel a lot.  I worked full time and went to college full time and played full time.  I have always had wanderlust.  The way I travelled as a teenager has had to be tweaked now that I have become both the mother of a special needs kid and disabled myself.  But it is still doable and I want to give hope to those who feel hopeless about travelling in similar situations.

I often hear that people feel like they cannot travel due to finances, and I would like to offer some advice in this area.  I am pretty good at making money stretch, and it all comes down to thinking ahead and trying new things.  There are many ways that you can minimize your expenses on vacation. 

First, be realistic. Obviously, coming from Washington, a trip to say, France, would not be in our budget, and it is not realistic to expect that with our income.  So here is how we travel....

How to get there?  Our family travels by car and the smaller the budget, the closer to home.  Every trip is a road trip, and we don't really have a destination so much as a journey.  I find that often times, the stops along the way that I didn't expect at all or didn't expect much from end up being some of the most memorable stops.  Some families loathe road trips, because riding in the car is not much fun for the little ones.  I suggest two things, make a lot of stops and find small games that will make it fun.  For example, on one of our road trips this summer, I made a scavenger hunt.  This was a list of things to try to spot while on the trip that Layne could enjoy, like a butterfly or a sea stack, etc.  Another game that is fun for Layne is a funny face photo shoot.  He often is not responsive to a 'look at me' type of photo shoot, but he does love to make funny faces, and if timed right can be a lot of fun.
He is the most expressive kid I have ever seen







How to stay?  We always camp.  Hotels are expensive, usually not worth it, and often one night at a hotel is nearly our entire trip budget.  The only exception to this is if the trip IS the hotel, which in my case, it better be something really special and only for one night.  So anyways, with my limited mobility, I have found that our truck conversion was much superior to camping in a tent.  We will always use the truck conversion from now on.  It was simple and cheap to build (about $50).  We stay totally dry- no waking up soaked as often happens in WA- and I expect it will be much warmer in the cooler seasons.  We don't have to set up a tent, which means no trying to corral a dog and toddler while trying to set up a tent in complete darkness (I often get so busy playing that I forget to get back to camp before dark!), and also means when you are ready to go in the morning, you just drive away, not much needs to be done.  Also, (can you tell I love the truck conversion?), you are pretty safe from whatever gives you the creeps.  My husband and I had an unpleasant cougar encounter at our campsite in the middle of the night in autumn with the nearest help much too far once, so this is a good one if you may be going away from the big campgrounds... which leads me to my next point....

Our truck conversion

Where to stay?  One word: boondocking.  This means different things to different people, but I think most agree it at least means free (or very cheap) camping.  Now my limit before I start to cringe to pay for a camping spot is $12 per night, although I appreciate free.  Now where some people disagree is basically the scenery (i.e., are you camping more in a urban paring lot or in a remote wilderness scenario?).  I tend to stay away from urban areas, because the things I am afraid of that go bump in the night are desperate people (I like to think that people that do bad things are desperate people, not bad people).  Now, I would suggest that you do some research online before heading out.  Free campsites are out there, but they are not overly abundant.  My suggestion would be to pick an area you would like to visit, say the WA coast, then write down all of the boondock sites you can find online.  Some good places to start your search are the DNR, BLM, and National Park websites.  I would also suggest Googling the area in general, for example "boondocking WA".  You will likely find websites that have some lists of out of the way places you wouldn't have found.  Then mark all of your boondock sites on a map and write them on a list.  They are often a bit difficult to find and are not well marked, especially those on logging roads.  Make sure before you set up for the night that you are sure you are in a safe and legal spot to camp.  Also, if you do use logging roads, it is very easy to get lost up there, so keep track of where you came from and use precautions (like GPS, or tell someone when to expect to hear from you next, as many cellphones don't work up there) to not get lost.  That being said, logging roads can also be some pretty amazing camping experiences.  During our two weeks on the road in July, I think we paid only a total of $10 in camping fees.  On another trip in May, we paid NO camping fees.  Also, just to be clear, these places pretty much never have facilities past a basic, often vault, toilet and a water spigot, and many don't even have these.  I would highly doubt you will find one with actual RV hookups.  I mean, it's free, so you can't expect everything.

Camping near an inlet

Right on the beach

Camping on the logging roads- very secluded and pretty

Camping close to the ocean beach


What to do?  Here is one place that you can save a lot, but where sometimes it's okay not to too.  State parks, national parks, and historic sites are usually our big stops on our travels.  Since being in my wheelchair, this one has become difficult.  I used to hike.  A lot.  On average probably 15-20 miles a week.  I was just always in the woods or on the beach, which I suppose is why I was driven to become a biologist.  Now, we have to look for ADA accessible trails, which are just not the same, and there are a shameful number of.  Even then, our son gets tired very easily from his lung disease.  Historic sites are usually a little better for accessibility than parks, but often parks will have one very short trail that is accessible.  We can usually still find some good spots to enjoy ourselves in nature for a bit every day on our road trips.  Another way to have some family fun for free is to take a stroll in the character laden downtown or historic area of nearby towns.  A good one, especially if you are coming from an urban area, is to go to a U-pick farm.  Fresh small farm crops are pretty amazing, a great way to pass a day, and are often surprisingly cheap.  Another sometimes free way to have fun is to catch a fair or festival.  Often times festivals are free, because they expect they will make money off of the vendors, who in turn make money off of the food and wares they sell.  Some festivals do charge an entry fee, so make sure that before you plan your whole trip around a particular festival, you know what you will be charged.  They can be a lot of fun and good memories though.  For example, in WA there are a number of pioneer fairs, county fairs, logging and gold mining fairs, renaissance faires, and kite and sand festivals.  The biggest expenses for vacation entertainment tend to be zoos, aquariums, and museums.  I love these types of places.  I really do.  So I usually pick a few throughout the year that I would like to see, and save aside the money.  There are often smaller versions of these outside of the big cities that are next to free.  Sometimes they take some looking, but they are there.  If you have a family of say, four, and admission to a museum costs $15 per person, that doesn't seem like a lot for one person, but four of you adds up ($60, in case you are reading this at midnight once the kids have finally stopped fighting sleep).  If you really can't live without them, look into packages that allow you to see multiple attractions for a discount (you will probably have to ask!).  Mostly though, get your kids outside!  It's free.  Well, okay, you usually have to buy a pass for the year, but then it's free.
And if you are disabled, or have a child who is, always ask if they have a disability discount.  For people with disabilities, you can get a lifetime Access pass to all National Parks for free.  Yes, you can go to any National Park in the US for free for your whole life.  That's probably due to the fact that often there is not a whole lot of accessible space, but the pass is still very worth it.  Look here (www.nps.gov).  There are other awesome deals for seniors and military families. 

Exploring around a beach grass area

Exploring in the woods

Exploring in the mountains

Exploring at a Lewis and Clark historic site




What to eat?  Now this is the one that I always fall short on.  I always have good intentions, then never stick to my guns.  You will want things that are easy to prepare, everyone will eat, and can be transported easily.  I'm still working those details out.  I will say though.  You will save a ton of money if you can plan ahead and bring your ingredients with or use a grocery store or farmer's market.  Eating out at restaurants or fast food is so very expensive for every meal on the road.  This money will take up a lot of your money without making you feel like it is.  $20 here, $15 there.... suddenly oh man, you spent $250 on food this week, crap.  A way to still get a feeling of being on vacation and immersed in where you are going, pick a special treat that makes you feel, well, special.  Maybe that's handmade ice cream, or coffee, or a scone.  Another good way to get the local flavor is through farmer's markets and U-pick farms.  Often even at U-pick farms, they have some already picked if accessibility is an issue (or you don't like picking, is that a thing?).  Farm experiences are another good way to keep the kids entertained.  Having a family with special needs often means special diets anyways, so you can save the fighting between family members about what's for lunch by having it solved before it's an issue. 

Great Farmer's Market treat- 5 honey sticks for $1 can't be beat

Farmer's Market produce (leeks)

Last, but not least, what to buy?  I never thought of this as really an issue before.  I'm not really into buying stuff, but I do like books.  Often I find myself looking for that perfect thing that only costs $1, or trying to pick between the five good books I will never find anywhere else (flash forward to the fact that the internet exists, and I will find it, but still somehow have this mindset).  Many people do get weighed down by these expenses though.  I find that with disabilities there is always that one things that you didn't bring since you didn't expect___________.  Those add up, and they are a bit tough to nail down.  For example, when you didn't expect to go through that much thickener, then have to search through nearly 150 miles before you find just the right one, because when it is 90F out (or any time, actually), you can't just say 'maybe you can just wait to drink any fluids for the next five days?'.  But when it comes down to it, do you really need a T-shirt from each beach town that you are only going to wear to bed anyways or shove to the back of the closet?  It's good to either set a limit, like $10 during the whole trip, or decide what you might like to look for ahead of time.  Or just enjoy yourself and don't really worry about souvenirs anyways.  I know some kids have a tough time with this, in which case, I suggest the limit.  I think you'll be surprised, if you can stick with it, what they will hold out for.

I hope I have inspired someone to take their family out on an end-of-summer trip down what will be your kids' memory lane someday, even if all you have is a shoestring budget.







Friday, August 21, 2015

Life Doesn't Go According to Plan


So, I had a blog post all written up and ready to post last weekend.  All it needed was photos uploaded.  That's when life decided to throw me yet another unexpected curve ball.

I got a text that my Dad was in the hospital.  He was having heart problems and was heading to the ICU.  He would be having open heart surgery.  They got him stable and then operated three days later. 

I never doubted he would make it through, but I was still heartbroken until I knew he was safe after surgery.  I spent a few days with him until the night after his surgery.  He is a huge part of my life.  I call him nearly every day.  I consider my family, and the people closest to my heart, my husband, my son, and my Dad.  There are many more people I love, but those three are the three that are always pushing me forward in life, the ones I couldn't live without, a part of my every day life.  My son and my husband adore him as well. 

His surgery went well, just as the doctors expected.  He is a superhero.  He has surpassed all of his expected timelines to get to each milestone (sitting, walking, eating, etc.).  No doubt he will be better than ever in no time.  I have a few amazing photos of my son and my Dad being so sweet together in the hospital, but out of respect for him, I won't post them here unless he wants me to.  Layne was able to be quite gentle and sweet for the most part with my Dad though when visiting before surgery and kissed his "pokes" (blood draw sites) and talked and joked.

On top of all of this chaos, my son and I have had our own troubles. The day I went to stay with my Dad in the hospital my son went to Children's hospital all day, I got worse, our car overheated, and my phone broke, all in one day.  Sheesh!...

During the time that my Dad was in the hospital, Layne had to go to Children's Hospital for 6 hours of appointments.  These were all in regards to pulmonary and aspiration issues.  We have gotten some more information from these appointments.  Layne had another swallow study, this one more thorough.  When drinking regular liquid (meaning not thickened), the liquid goes down the wrong way and sits on the vocal chords every single time he swallows.  They didn't see it go through the vocal chords, but they said that during a meal it is absolutely certain he would aspirate at some point- and this is with a trainer sippy cup, which is the strongest valve you can use before going back to a bottle.  This means that in the past three years, he has pretty much always had some amount of fluid in his lungs.  The good news is that when the liquid is thickened, he swallows correctly into his esophagus.  The bad news is that he will likely have to have surgery on his throat to correct this.  He likely has an anatomical problem that has caused there to be a gap where the folds/valves are supposed to close over his trachea to prevent liquid from going to his lungs.  This would be a cleft from either a birth defect or from being intubated for so long.

Layne will also be getting another echocardiogram to check on his heart.  He just gets tired so quickly.  He has lots of energy while active, but then just needs breaks very often.  During physical therapy, he can only work hard for about 20 minutes before he is unable to do what he is asked.  When I asked his physical therapist what she would expect for a healthy kid at his age, she said he should be able to make it the whole time through before getting worn out.  After about 20 minutes during that therapy session, he had to be put into a swing, because he was to tired to finish his activities.  His pulmonologist said it is likely a pulmonary or cardiology problem.  He does have a murmur and still has one heart defect that the cardiologist had said was okay for now (a year ago), but we need to investigate his heart further.

I have slipped back to being completely incapacitated.  It all started about 2 weeks ago.  At that point, I was becoming a little more mobile.  Then, we went to a renaissance faire.  It was in a big field.  The grass was very short and almost entirely dead, but my wheelchair doesn't do well on 'off road' terrain.  So I thought 'I've been getting around better, why not walk with my cane instead?'.  Turned out to be a bad idea.  At the back side of the park, my legs started collapsing.  I started panicking and almost crying, because I couldn't find a place to sit and we were so far away from the car.  Thankfully, we got to park up close to the faire in a handicapped spot.  From that day on, I have gotten worse and worse.  This week I hit rock bottom again.  I was already declining, but the stress and the lack of sleep (Layne has boycotted sleep and will only sleep about 2 hours a night) has made things much worse much quicker.  My fever has commonly been up to 101F from lupus, and I have had trouble with my vision.  I am unable to walk and have to be lifted to move out of bed or to the toilet.  The scariest though has been my difficulty breathing.  the night I came home from the hospital staying with my Dad, I kept stopping breathing while awake, and my oxygen level was only 91.  My husband was in the other room attempting to get Layne to sleep, and I was so weak that I was unable to communicate to him that I needed to go to the ER.  I was waiting for him to get me a part to my APAP (a machine to help me breathe at night), but finally just used it since the part wasn't necessary for its function.  I decided it was okay to get some sleep as long as I had my APAP on.  When I woke up in morning, I checked the data on my APAP, which said I stopped breathing 17 times per hour, some of those being very, very long periods of time.  Of course, my head was very painful from lack of oxygen (If you haven't read The Fault in our Stars, you need to, and there is a part that talks about low oxygen headaches), and my joints have also be extremely painful from lupus and from my pain patch being on backorder for a while.  I saw a doctor at my doctor's clinic, and they were considering checking me into a hospital for a short time.  He decided to try a large dose of steroids first, with the hospital in our back pocket.  Right now I am still in the thick of it, but I am hopeful these steroids will help quickly.  I will certainly need to be able to get out of bed for the couple of appointments to Children's Hospital next week and to visit my Dad. 
  
My APAP to help keep me breathing at night.  An APAP is between a CPAP and a BiPAP and has variable pressure to make sure I can breathe in and out.


Sunday, August 2, 2015

The start of a new season

I know.  It has been over a month. 

And really my only excuse is a poor one.  I've been exhausted.

SO much has happened.  We were on the road and didn't have internet access for a while.  Since then life has just been so chaotic, busy, and exhausting.  I just haven't had the time or energy, and my vision and hearing are still pretty challenged, which makes everything harder.  But let me start at the beginning.  There has been some good and bad and a lot overwhelming, but at least there's good, right?

We moved about 4 hours away from our last house- the one that was falling apart.  We moved into the most perfect house for our family.  It is the nicest house we have ever lived in.  It is clean and modern, and I don't have to worry about the quality of the house affecting our son's lungs.  It is in a bigger city, which looks like it will give our son better access to services he needs to succeed.  It is close to hospitals and doctors and therapists, but still close to parks and beaches and museums.  It is somewhere we can settle and call home.  The only downside is that we have to keep our house sealed- staying inside with closed windows and doors- on certain days when the air quality is too poor for Layne's lungs now that we are in the city.  So far with the warm weather, that has been about twice a week.  Some days that means we are stuck inside the house as it rises to over 100F without being able to air it out- we are ready for the fall!  The new house is also pretty accessible for when I am in my wheelchair.  Even better though.... I have been walking, with a cane, for the majority of the time for about three weeks now!  I have still had some time in my wheelchair, but I have also had a fair share of time walking.  It is wonderful, and I can't wait to get back out on the trails soon.  Baby steps.
Front door of our new home

Front door of our new home


Soft light in our kitchen at night


A tiny library nook

Here are all of our possessions moving into this house


Since we moved into this house, we had to sell the tiny house.  There is nowhere to keep it at this house, and it was not practical for us to finish it anyways with all that we have going on all the time.  It went to a lovely gal that was very sweet to us.  She was excited about it.  When she heard our story about it, she asked me to write up a page about how I wanted to finish it and she would try to finish it the way had I dreamed as well as she could.  She seemed like someone I would be friends with, had similar ideals, and even left a us a little gift on the porch the next day.  I'm happy knowing it will go to someone who will appreciate it.

The last day owning our tiny house *sniffle*


We moved out of our old house at the end of June, but weren't able to move in right away to the new house.  So we thought, 'we have always wanted to live on the road- here's our chance!- let's use this weird transition time to live on the road for the summer'. We even built this awesome bed to convert our truck to a camper.  It has a raised platform for sleeping and a storage area underneath for everything you need for travelling.  We were still pretty scrunched, however, because of the piles of medications and adaptive equipment.  We are constantly buried in this stuff.  I have a backpack for my needs, a backpack for Layne's needs, a cane, and a wheelchair- and that's just to leave the house anywhere, even the grocery store!  To leave for the whole summer, we also have boxes of nutrition supplies, respiratory supplies and machines, boxes of medications, huge folders of medical paperwork, sensory equipment, and even a walker for Layne.  I mean the amount of stuff that we need on a daily basis to make life just functional is phenomenal.  So different from when I was a teenager and I would just throw my wallet and phone in my back pockets and hop in the car, on my way to anywhere I pleased.  In terms of everything else, we are definitely minimalists, but we are so weighed down with medial supplies it's crazy.  Anyways, exciting summer travels!....

Building a truck conversion Step 1: Build top and bottom frame

Step 2: Build frame sides to make a box

Step 3: Add a platform


It can be removed, if needed.

A full size spare and jack fit underneath, then in the front, three drawers- one for each of us- and a little space for extras like cooking and emergency supplies. 

How fun is it to have this in the back? It's like a treehouse in the truck!

No.  Layne totally shut down.  It was horrible.  I knew there would be challenges.  Everything in life has challenges when you have to fit your disabilities into the picture. But I did not expect this.  He has always been a challenging kid.  He is on the extreme end of sensory sensitivity.  When he is feeling healthy and comfortable, he can be so sweet and so cooperative.  When he is overwhelmed though, he can get pretty wicked.  My goodness.  I have NEVER seen him shut down like he did on our travels.  He is normally quite talkative to my husband and I, but he became non-verbal.  All we could get out of him was grunts and screams for a little bit.  He had a lot of difficulty walking.  He was so stressed that on a few days, he was unable to really walk on his own.  He would just fall every few steps, walk drunkenly, and ask to be carried.  That part really worried me.  We rented a walker for his size for when this might happen in the future, but he became to fixated on the walker that it was more of a problem than a help, so far at least.  And he became aggressive.  Being aggressive is his last ditch effort, his rock bottom, his only way to interact once he has reached that point of no return.  We normally see this each day during the activities that overwhelm him, like diaper changes or getting dressed.  He can't stand the clothes moving over his skin or our hands on him to dress him, and it is so overwhelming that he lashes out and hurts us or himself.  But this aggressive behavior was lasting all day.  Each time that we tried to interact with him in any way, ways that we thought would normally be fun or in ways that were necessary (like diapers, feeding, etc.) or in ways that were discipline, every time was met with aggression.  He even started to be aggressive to people other than my husband and I, which is unusual.  It was clear that being out of routine was so entirely overwhelming to him that it was painful.  On top of that, he couldn't fall asleep in these foreign surroundings, even next to Mama and Dad. And anyone who has had a child with a sensory disorder knows that sleep deprivation is the worst.  If they don't get enough sleep, that alone can cause negative behavior.  And on top of that, he has had lots of doctors' appointments and full days at Children's. 

After just two weeks, we were desperate.  Absolutely desperate.  So we made arrangements to move in right away.  Dealing with a child that is basically in a sensory meltdown 24/7 is so exhausting for all parties.  Additionally, stress, lack of sleep, and being physically overworked makes me more sick.  So returns the fever that I finally had under control, along with the intense joint pain.  It's a snowball effect.  We just couldn't do it anymore.  We can handle a lot, and we generally have different ideas than most Americans in what we want in life- and living on the road is one of those things that I dreamed about since I was a little girl, in fact as far back as I can remember- and we still wanted out.  Maybe someday he can handle travelling.  For now, it is just painful.

So about all of those doctors' appointments?  It has been an intense month for us.  Lots of diagnoses.  Lots of new things, new routines, a new normal. So much has changed.  We were already living lives with a completely different normal from everyone else, but now it has gotten even more so.  It's not really bad, just different.  Once everything settles, and we all get used to it, life should actually be better!  We are finally getting answers and help to some of these huge medical issues. 

First off, respiratory.  Layne has been diagnosed with chronic lung disease.  This is due to how long he was intubated (which is total life support, meaning he was unable to breathe so a machine breathed for him) as a baby and how long he required respiratory support.  He was intubated for really quite a long time comparatively.  The constant pressure on his lungs damaged his lungs.  Normal healthy lungs are soft, but the pressure caused his lungs to become stiff.  Also, we saw blood coming up his tubes, so obviously there are some issues there.  He also has fairly severe asthma, which we are treating with steroids in a nebulizer a few times a day.  I love the nebulizer.  It has made such a difference so far.  He has had much less concerning moments/days than before the nebulizer.  He will also be getting further studies evaluating his airway.  He may have a damaged airway that has become permanently restricted from the ventilator (intubation).  This smaller airway would explain the respiratory emergencies and some other issues he has had. 

He finally got real help with his aspiration issue.  This is a huge step toward helping him be healthy.  The pulmonologist heard fluid in his lungs.  This was kind of disappointing to me, because we are so avidly protective of him and his diet.  We were doing all we could with what we had available, and we were still unable to protect his lungs. It felt like I failed.  It was also a good thing, because it was a bigger push to get him the help he needed.  We now have to thicken everything that he drinks and anything that he eats that is fluid-like.  That also means nothing that can melt, so no ice, no ice cream (non-dairy even), etc., which means he misses out on some summer fun. But at least it keeps him healthy.  We have used frozen berries and fruits instead,  which he loves anyways!  We call his thickener his 'magic potion', which has made it exciting for him.

There is another perk to having medical nutrition supplies- we finally found a soy protein drink that can help put some meat on his bones.  He is small.  Not on the growth chart for his age small.  He is small in both weight and height, but especially weight.  Finding clothes that fit him is really hard.  So hard that I am considering making him some custom clothes or somehow altering what is available.  He is so small that 18 months pants still don't stay up on their own on him. At three and a half years old.  But they are too short now. And his head is too big for most shirts that would otherwise fit his small torso.  Clothes also need to be very simple to put on and take off due to the intense struggle that is dressing him with his sensory challenges.  So he is exclusively in overalls, but that hasn't been that great of a solution either.  Overalls for his size are made with buttons for easy access for diaper changes.  Well I cannot keep the dang things shut!  I don't know why, but they will not stay shut.  And it's not because he is too chubby for them, because there is a lot of room in there.  This makes me cringe in public as his mother.  He is always running around with his clothes half off and usually having a meltdown on top of that.  The next stage will be to sew that part of all his overalls shut.  There have been such an enormous amount of projects in this new house to make the house safe and suitable for Layne that it may be a while until I can get to that one.

Soy protein shake to bulk up our kid


Layne has also been officially diagnosed with autism.  He was diagnosed at one of the best facilities in WA for autism.  So this is a very respectable decision and one that was not made lightly.  The process was very involved.  The doctor said that he was tricky to diagnose.  He has some strengths, but also has some challenges.  There were even some quirks that we thought was just something he does that the doctor brought up as being common to children with autism.  We would have never known that otherwise.  He was diagnosed with autism disorder (a type of autism).  He is not considered high functioning or low functioning, but somewhere in between.  As he has grown over the last six months or so, we have seen the concerning parts of his autism growing into a bigger problem.  This diagnosis is the key to getting him the help he needs.

I have read and heard many parents' reactions to an autism diagnosis.  That it is overwhelming, shocking maybe, that there is grieving.  But for us, it was an enormous relief.  It meant there is a biological reason behind his difficulties and now we could get help. We had already been through the grieving.  We already know his life will be different than we may have imagined it.  We already accepted that it's okay if he doesn't do anything 'normal' people do in their lives.  Our lives hadn't turned out 'normal' either.  The doctor said at one point something like, 'are you okay? I know this is a lot to take in, a lot to process, and a lot of information.' But neither of us felt that way.  We looked at each other for confirmation, then at her, and said 'no this is normal for us, this is a relief'.  It is so normal for us to leave doctors' appointments a few times a month with new diagnoses, new tasks, new information to absorb.  This is not meant to belittle or dismiss the reactions of other parents of children with autism.  We are just so used to it.  We are used to diagnoses and our own normal.  We just want to know what we can do to help him.  We are willing to do anything for him.  That's just what we do.  It's how our lives have been since before he was even born.  In that fateful hospital room in the days before he was born, I asked for him to be saved, even if that meant to sacrifice myself.  It's just what I do as his Mama.  It's what we do as a family. 

The difficulty is setting up all of the care he needs.  The autism doctor said that he will need between 25-35 hours of therapy per week.  That's a full time job.  Literally.  I cannot wait to get him set up with therapies, because it does help.  It's a lot of work, but even so, it is less work than caring for him when he has no therapy.  Especially since we just moved.  Our family as a whole easily has more than 25 doctors.  Seriously.  So I need to establish care and the myriad of paperwork and hoop jumping that establishing care with that many doctors requires.  Once we finally have everything established and settled though, this area will hopefully offer him better options than he had where we lived before. So far this has been a very difficult process, one that I have put many frustrating hours into so far.  There are long waitlists here.  ABA therapy, the critical behavior therapy for helping children with autism, has waitlists of years.  Speech therapy has a long waitlist here too.  We even had a wait for a pediatrician!  This is a bit disappointing.

He also saw more neurologists. The most recent of which gave us more home health equipment and help with services.  The doctor did not think that Layne had cerebral palsy and felt that we could drop that for now.  She felt his difficulty in walking and balance is due to sensory sensitivity.  Basically, the idea is that he becomes so overwhelmed by sensory input that he cannot focus on walking.  Sometimes to the point of being unable to walk, like during our travels this month.  He also has trouble with his vision, which contributes to his difficulties.  She thinks he gets tired so easily due to his respiratory difficulties.  He is generally unable to be active for the whole time period of physical therapy, and he tires much more quickly than other children his age, requiring breaks often while playing.  I know if you can't breathe well, it does make you tired.  But he gets really tired.  He says he is tired all the time, and can't walk very far.  It seems to be getting worse, and he doesn't want to walk anymore- even on trails that he used to love.  He usually ends up saying he is too tired after walking only a short distance and his walk is obviously different than other children.  He looks wobbly, like a drunken cartoon character or a child just learning to walk still.  I can't help but feel like we are missing something still.  I get feedback from everyone else that he works with that he walks strangely and tires too easily.  It just seems like there is something to his gross motor deficits and the obvious difference in his walk.  For now, I will watch it.  We did get some ideas on therapies and ways we can support him and help him continue to progress.  But the best part is that we finally get to order a specialized car seat that will help keep him breathing when he falls asleep in the car!  This is awesome.  Unless it happens to you, no one knows how terrifying it is to have your baby stop breathing, especially in an environment like the car where you can't immediately help them.  We have been through breathing emergencies so many times.  Ones where he started back up on his own again, and others (but not in the car) where he needed emergency help before starting up again.  This car seat will hopefully be the answer to stopping this in the car.  The problem is sort of unusual and just the perfect storm.  He does not have enough strength to hold himself up in the car seat when he falls asleep.  Then his saliva pools up, which he then aspirates.  Since he is sleeping he doesn't correct it right away and it stops him breathing for a period.  So scary.  This car seat should tilt him back like a little baby should be since his strength is not up to his age level.  Then hopefully that will keep his head in place in a way that is safer.

Since we have settled into this house, Layne has settled a little too, but we still have a long long way to go.  He doesn't like to be touched.  Most of the time if we try to hug him, he says 'don't touch me'.  Any kind of tactile input is overwhelming to him.  We did get a compression suit that covers more of him, which has helped significantly.  The day we put his new compression suit on him he started talking again.  It's that good.  He is back to talking consistently in the house.  He is still very overwhelmed by any and all sensory input all day.  We are not really able to go anywhere, grocery shopping or fun family outings, yet without quickly having a meltdown or aggression.  I do so hope that starting some of his therapies soon and getting a clear routine and homeschool started up will help him to be able to deal with some of his sensory struggles.

As far as myself, I have been walking and functioning much better.  I am walking with a cane and still have a lot of struggles with vision and hearing.  There are classes of hearing and my hearing tests one class above being considered clinically deaf.  My hearing aids help quite a lot and make it so I can hold a conversation, but I still have trouble understanding many words despite being able to hear them.  The phone is tough.  I am also unable to drive due to my vision.  I think the best improvement is due to a bed my Dad gave us.  He had upgraded and offered us his older one.  Our bed was probably one of the worst beds anyone in the developed world has slept on.  My husband's side was so terrible that there were giant craters where there was no more mattress and he had filled that area in with blankets.  We joked that every morning I looked like Maleficent when she wakes up after her wings have been cut off (If you have not seen Maleficent, do.  It is one of my favorite movies).  I was unable to move in the morning for an hour or two, because it was so painful that my body simply refused.  Now on many mornings, I can just... get out of bed.  Just like that.  It is a bed that you can adjust the elevation of your head and feet, like a hospital bed, but more comfortable.  Being able to elevate my head and feet so that my hips aren't laying flat has helped a lot. 

During this time, I also had a birthday.  My actual birthday was not much fun.  We spent the entire day at Children's hospital.  Layne was struggling a lot that day, especially during and after the last appointment.  We were stuck in traffic for hours.  My birthday present to myself was a new cane- for my 27th birthday- since mine had broken.  At the end of the day, I just wanted a cake, but when I got to the store it was too late and the bakery was closed.  A week later, my Dad, step-mom, and sister came over, and we all had cake (that one I wanted) and vegan lasagna though.  We had a good visit despite the fact that I cut my thumb pretty badly making said lasagna, which even my Dad said was good (the lasagna, not the cut).


Isn't it one of the greatest cakes you have ever seen? It's so adorable that I ended up eating two (well, I shared them!).


We took Layne to a sensory friendly movie.  It was his first theater experience.  And it was actually quite special to us.  Sensory friendly movies are movies played in a theater, but the environment is a little different.  They leave the lights on and turn the volume down.  Also, since there are other kids with special needs there, no one is upset if your child can't sit still or keep quiet.  The way he behaved was probably not fit for a regular movie, but he watched the whole movie and acted much better than we expected.  It was special to us, and we are thankful sensory friendly events exist.  If you would like to find such an event near you, you may need to do a little digging, but they are out there.  AMC theaters does these once a month and often times local museums do these as well.  The Pacific Science Center and the Hands on Children's Museum both do sensory events.  We have not yet brought Layne to either of these museums or AMC for sensory events, but intend to in the future.

Layne standing proudly in front of the movie poster for "Minions", which we saw as a sensory movie, his first in the theater.  He loved it, and we were so happy to see him in a situation that worked well for him.

We have been building a bed for Layne.  He needs a custom, sturdy, inexpensive bed.  It needs to be low to the ground and have curtains (or be 'a cave').  This is far from done, but here is what we have for now.  We need to lower it, since the 'low to the ground' part did not pan out yet.  It is too high up, and he cannot get into it when he is tired.  It will be painted and magical when it is done!  Even better, we made most of it out of recycled wood.  Yay for recycling everything!

Layne's bed- partly done- but usable.  The open part is a bookshelf.

So overall...?  It is mostly tiring right now, but we can see things are going to get better.  Good things on the horizon!

Now of course since I haven't written a blog post in so long, I have literally taken several hundred photos in that time.  So I will put up a few photo blog posts soon.  These for now, are photos of us exploring our new home.....
Moon

Playing in the rocks near the driveway- making his own makeshift rice bin for sensory input that is calming.

Playing in his actual rice bin.  We removed the rice after this and replaced it with bird seed, which has multiple benefits.  He still get the right sensory input, the birds don't die from eating it, and we can watch the birds flock in the backyard afterwards.







There is an open field behind our house that we play in. 

He has learned how to ride his trike!  And he is a little obsessed with it.




He was a little too obsessed with the walker.  He took to it right away, but we have put it away.

He really likes Captain Picard.



I know it's a little blurry, but come on!



Layne and I made a box into a car.  Layne has the most amazing imagination I have ever witnessed.


A car-box is a good place to mellow out be stimulus free.

Do you see the resemblance?  Was Lola a dragon in a past life?




One of the many taking advantage of Layne's sensory seed bin.



Adorable baby ducks!

Duck bathing

Layne really loves Mr. Peabody and Sherman and Rocky and Bullwinkle.  We found this little pair on our travels.  They are reserved just for "dragon mask" time, when he also gets to watch an episode featuring them. 



I made some bonnets, because why not?  One was a little too small and Layne instantly claimed it as his own.  He was just a bit too adorable in it.