Giving Back.

In our life with Bradley, we have had our ups and downs - and not always due to medical stuff.  Bradley’s, Dad’s, even Sydney’s.  Those three have had their part in the medical drama that we call our life.  On top of that there has been the offshoots of living.  Sure it was because of Bradley’s medical needs, but when we moved to Ventura County, he was fragile enough medically that I drove to San Diego for six months, multiple times a week for his medical care.  Trying to get established in a new place with a medically fragile baby took some work; but we finally did, we had too.  The cost of the traveling was taking a toll on our ability to pay the bills and make ends stretch to form a bare touch.  Then the government went on Furlough, so Eric lost a days pay every week, a 20% cut in our single paycheck for our family.  Outside help kept us afloat...that and the girls loved the dollar Yakisoba from the Commissary, Hallelujah!

Charity was a new and strange thing for us.  Bradley’s formula needs were so particular we were looking at a formula that would cost us $820 a month if Tri-Care approved it.  We couldn’t understand why it wouldn’t be covered, until the doc that kept saying no explained that we would have a  twenty percent co-pay that would have us paying that $820 each month.  So we had to wait for other insurance means to pick up - that would be Medi-Cal, but it was in the distance...so far.

So we had to go and apply for WIC. We were able to get ten days worth of formula for Bradley, and they would get another week when it came in, and we could get that until Medi-Cal kicked in.  But they also gave us vouchers for milk and vegetables and fruits....we tried to  decline pointing out that though he was close to a year, he was nowhere near capable of eating or having any of those things.  But the clerk was so kind, she glanced at our paperwork and told us to take the vouchers, Bradley’s sisters would eat the food.  So that helped.  We had a non-profit group of doctors and lawyers donate a full two months worth of his formula for him, thanks to his Regional Center Rep reaching out to them.  And oddly enough, we were given a month’s worth from the ENT that took care of the girls...a different one than Bradley’s.

These are just a few examples of how we have been cared for along our way.  Even in the midst of the toughest times; when the strings didn’t tie, we tightened our belts a bit and went without a little more to make sure the kids never did.  And always they ate, there was a roof over their heads and we kept them safe.

And then Bradley turned three and his Regional Center Rep gave me a phone number and told me I was to call right away and leave my name and number.  That phone call started a journey that put me back into employment as the Care Provider for Bradley.  The state pays me to care for him so that they don’t have to provide him a nurse, or any special facilities to keep him safe and help him thrive. That’s always been my job, so it has been weird for someone to pay me to do it; but the truth is, working outside the home with his needs is not possible.  So there it is, my son is my boss.  And some times he is the BEST boss, and some days...boy oh boy...he likes to push me as far as possible.  Course, I can put my boss in a timeout, who else can do that?

In the end, my working helped us alleviate the pressure.  We saved, we paid off bills, and eventually bought a house.  Time’s got better, and for that I am grateful.  Because of how hard it was, we truly appreciate how much better it is, breathing is easier.  And because of how hard it was, we try to give back as much as possible.

When we have an overflow of Pediasure because Bradley needs something different when he is sick: we donate it to his GI, who can make sure needy families have enough for their babies.  Things like that we pass on what we can when there is a need.  During the fires, we try to provide assistance with items that are not glamorous, but are necessities.  And every opportunity that comes our way to be of service in the community, we try to take part.

It’s been more of a priority lately because the High School wants their student athletes to be active Community service members.  So my girls have helped with a New England BBQ for the Scottish Rites over summer; and a couple weeks ago, they volunteered at the Heart walk.  Madison even donned the heart mascot costume and managed to make so many laugh and smile.  The girls came home from both events smiling, and full of light.  This morning, the three of us went to Ventura Harbor (so beautiful) and helped with the Strides For Breast Cancer event.  We had planned to stay the day, but had to leave to get the back for them to run to a last minute practice for volleyball.  They play Monday and Wednesday and then their season is over, just like that.  Where did the time go?

But despite the shortened day, they had so much fun.  Met so many people, helped set the event up and then walked through the crowd, stopping to offer to get group shots of people, then helping to keep the fruit and water table stocked as folks were getting ready to walk.  When we left, Sydney told their coach they were coming but would be late, and then told me that she read a text from a teammate that she wouldn’t be there because she had just woke up...to which Sydney said: “We’re going to be there a little late, but at least we were doing something that is good for our souls.”

And my heart smiled.  I tell them every time we go do something to volunteer that it’s good for their souls and that always makes it worth it.  Imagine my joy hearing her repeat what I tell them, unprompted and from her own beliefs.  I feel like our rough start after Eric’s retirement from the Navy has brought us full circle.  We kept pushing and praying and never quitting, and now we can take the time from our better life and better days to be there for others, and it feels so rewarding.   Next week, we are going to help with the Relay for Life.  As my mom is now fighting cancer, for the fights both Eric and I had, this one means as much to us as the Heart walk.  And the girls are so excited to go, and I am so thrilled to be doing this with them, making these special memories that are strictly part of heart and soul, I will cherish this time with them for always....I hope they take these moments with them for always too, and never forget to complete the circle and give someone a hand when they can, knowing that someday someone may reach out to help them up.  It’s so good for the soul!

It was never promised it would be easy, but it was promised that it would be worth it.  And indeed, it is.  Happy Saturday Friends!  Another day in the 31 For 21 Blog Challenge.  Accepting that when Bradley came to us, he brought so much love.  Blessings on you all!

Back on the Bus!

Bradley was back to his usual self yesterday...charming and cute one minute and screaming because he couldn’t go outside the next.  After three solid weeks of being sick or sick enough to require antibiotics; going out on the windiest day of the year wasn’t a viable option.  Hence the screaming.  The wind was whipping so bad, my non-asthma suffering self was suffering - so his compromised respiratory self was definitely not going out in it...so he chose to exercise his lungs the only way possible.

So today he finally got to go back to school.  It was kind of a toss up actually.  The winds are bad making air quality poor, the fires are hitting on two sides of us and the air quality is worsened by the pollutants in the air, and it is a Friday, why not wait and send him on Monday...  Tough choices.  I decided that he should go to school especially because it was Friday and there are fires burning in our County again.  I figured he could go to school today and slowly return to his school rhythm.  I also figured that with the winds like they are, he won't be going out much over the weekend, so let him get some energy out at school before being cooped up at home all weekend...although a trip to Chuck E. Cheese might be in order.  My kids loves to play the little kid versions of the football game and the basketball game.  No small feat in truth, it took a great deal of effort to get him to let go of a ball once he picked it up and then let go of one towards the game, not towards the other kids.

Anyway, go to school, get back into the routine and also work through some of that pent up energy because he feels better.  Plus, we never know which way the winds will turn, and we could be further isolated at home in no time at all, simply from smoke in the air.  The last two years the kids have missed weeks of school due to poor air quality from the smoke and ash in the air...so no reason not to anticipate the need might arise and be ready for when and if it does.

I had to wake him up for school, first good night’s sleep in weeks, so he woke slow and was less inclined to be up and about.  But when I told him we needed shoes so we could get on the bus, suddenly he perked up and was compliant.  He was so happy to ride the bus; so much so, he led the way out the door and was smiling at me through the window by his seat on the bus.  Luckily, the good feelings lasted all day.  He shared with friends, he helped clean up, and didn’t fight transitions, didn’t get upset when he had to work on goals.  All in all, he had a fantastic day.  When he climbed off the bus into my hugs he was so happy to see me, it was great!

So I’m wondering if we could just transition him to a one day of school a week program?   It worked so well this week, why can’t we just implement this plan for all the time?  School will be exciting and new all the time and he’ll know it’s a treat to go and won’t exhibit any behaviors, it would be great!

Sadly, I don’t think anyone else will be on board with this plan, but it was worth a shot.  Oh well, there’s a great deal to be said of returning to usual routines, familiar faces, and the bus.  But mostly the bus!

Another day in the 31 For 21 Blog Challenge.  Thank you for stopping by, see you tomorrow!  Oh and, Happy Friday Everyone!!!!

Didn’t Get the Memo...Oh Boy!!!

I’m not saying that Bradley and I are typically on the same page; but for the most part, I can figure out what he has cooking in that brain of his.  There are times that he completely baffles me as any good complicated kiddo can.  But then there are times that if he had a neon sign above his head, he’d be telegraphing his next move in huge flashing lights.

The worst times are during illnesses when he suddenly turns off that sign and I am left trying to figure out what he needs.  When he cries and you can’t figure out what it is he needs to stop the crying... ugh!!!  A special circle of Hell that Dante might have considered but didn’t include.

But then there are the other times, when we are so completely not on the same page and whatever he has going on in that brain of his is as surprising to him as it is to me.  Today would be a perfect example of that phenomenon.

After a particularly messy diaper, Mom determined that a shower would be just the ticket and bustled him into one.  He spent most the shower vocalizing as loudly as possible because the acoustics are supreme. But we finally get him washed and out of the shower, dried off, and he takes off.  Luckily, he heads in and climbs into my bed.  So I run in and grab a pull-up and get him covered.  While I am back in his room trying to get a onesie, I hear him running down the hall.  I glance out into the hallway and see him standing in the foyer.  We have a half wall between the hallway and the living room, and on the other side of that wall is our couch.  I have not been a huge fan of the half wall, I think a more open area would be better.  That being said, I want to say I was wrong - the half wall is a Fabulous addition to our house.

So I see Bradley and notice that he is naked.  My first thought is, “Oh hey, he pulled his pull-up off, good job bud.”

As I come down the hall towards him, I then think, “Uh, where is that pull-up?”

I notice he’s leaning over the wall and dropping his pull-up on the couch.  In my head, “Please, let it still be clean.”

Then all thoughts fly out of my head as he is standing in the middle of the hall, (Thank you Lord), on the tile... and he starts peeing against the wall.  Like with effort and some aim.  I notice the aim but still am yelling “No!!!”

He looks at me and laughs... probably the only time in this situation where I know he is thinking “Haha, funny momma.”

I try to grab him, he stops peeing long enough to scoot away from me and almost bust his bum because, “Hello!  Wet floor!!!”  He catches his footing - somehow, and pees again!  How much has he got in him... but wait!  It gets better - apparently he also had a little poop left and proceeds to drop that in the middle of the puddle he made.  Argh!!!!!

I finally scoop him up and get him on the potty, tell him “You poop here, and pee here... not on mommy’s wall or floor!” He just laughs and trickles a tiny bit more and looks at me like - “See!  Just like you asked Momma.”

What does Momma do?  What else can I do?  “Good job Buddy, give me knuckles.  Now let’s clean you up and get you buttoned up so I can clean the wall and floor.”

I get him straightened away, pat him on the back and tell him, “How about next time you tell me when you and I are going to work on potty training.  That way we’re both on the same page okay?”  He; of course, toddled off to find his movie and was completely oblivious to mom working on cleaning up the mess.

Oh well, the floor was due for a cleaning anyway.

Go ahead and laugh, makes life easier in the long run.  Have a great day folks!  31 For 21 Blog Challenge...  Accepting that sometimes you just aren’t going to be on the same page... no matter how hard you try.  Haha.  See you tomorrow!!

Stack, Line, Collapse, Repeat

Bradley is a stacker and loves to stack and to line things up.  At one point, when he was just barely walking, he sat in my dad’s garage and he pulled all the water bottles out of the flat and lined every single one of the up in a nice long row.  Like a really long row, much like dominoes as they all toppled in a slow-motion viewing of catastrophe.  I could quickly pick them up and place them back where they belong, or even within his reach…but the amount of noise coming from the garage was not something we could hide.  Whoops!  

His desire to stack and line up pretty much all things is not something that he has ever outgrown.  In fact, it is more important to him now than ever.  Bradley wants to have his iPad, but he wants to have his blocks at the same time.  He isn’t really a builder, but he loves his Lego blocks.  Sitting with his iPad in his lap, he likes to cover the whole screen with the same size Lego blocks – fours or eights, depending on the day will depend on which ones he covers his screen.  When he gets bored with his screen covered, he’ll decide to stack the blocks on their sides and build them up like a wall…sadly, he doesn’t choose to connect the Lego’s, so the slightest move and they call come tumbling down.  He takes this pretty well.  If he is still happy with those blocks, they just get stacked right back.  If he has determined that he is bored with them, they do get stacked again but only so he can toss them unceremoniously all over the floor in front of him.   When this happens, he is then required to get down and pick them all up and put them in their bucket.  Sometimes this makes him all the more interested in them again…but sometimes he sets them aside and goes for another stackable. 

Lately, he has discovered Dominoes.  They are the perfect three row high cover to his screen.  He doesn’t look at the dots, he turns them over and leaves the blanks face up.  So much for teaching him numbers while he plays.  Hat we ran into this week was the simple fact that he didn’t have the perfect number of tiles to cover his screen and we were struggling to understand what it was that had him so agitated.  Maybe we would have blown it off in a regular week, but this week he was feeling so bad for so long, we really had to figure out what he needed to make him happy again.  Once we figured it out, Dad put a picture of a Domino Tile picture on his speech Pad.  Now he tells us when we have moved from one type a block to another.  Hey, it’s the little things. 

Bradley likes to line up his pins for bowling too.  We have a lovely space outside now and so I took him outside, lined up his bowling pins and started to play bowling with him.  Sadly, his method of play is actually pretty exhausting for Mom.  He will throw the plastic bowling ball but won’t go get it.  The last time we were outside, we set up his pins and he threw the ball, then refused to go get it.  So, I walked over; like the well-trained mom I am, and I rolled it back towards him, making sure I missed the pins.  The first few times he would get it if it was close to him.  But a few times more and he realized how hot it was outside and how much he didn’t care for that.  So, when I turned back around from getting the ball, he was sitting on the ground, over in the shade.  When I gave him the ball, he stayed on his bum and tossed the ball at the pins and then remained seated while it went away from both of us.  I tried a few more times and only acquired a sunburn for my trouble, so he and I chose to return inside soon after.  

Tonight, Bradley was eating some mac n’ cheese at the table.  Eric brought home some Pediasure with Fiber six packs because when Bradley gets sick, he needs the extra Fiber to protect his intestines.  With two six packs sitting in front of him, Bradley keeps moving them around each other, lining them up and then moving them to line them up another way.  Finally, he gets tired of holding his iPad, but doesn’t want it to lay flat, so he pulls a six pack of the Pediasure to him, sets it up perfectly in front of him then puts his movie in the middle divider of the six.  The three bottles in the back hold then iPad up while the three bottles in the front keep it from falling forward.  Then he gives me the biggest grin and a slight eyebrow twitch up and I can’t help but laugh at him and applaud his ingenuity at the same time.  Crazy little guy.  Thank God he is feeling better and I am seeing those mischievous little grins returning to his face.  

The last of the hives are slowly fading away, we’re almost free of them.  The temperature is hovering at 99 still so we still have that to contend with, but my hope is that when the last of the spots fade, then his temp will drop back down to his more typical 97s.  When that happens then I am hoping that the rest of his problem systems will also line up and get all back to their usual working order.  He’s much more vocal tonight and he has been stacking and lining up all evening, so for me those all point to a slow return back to his usual.  We cannot wait!  

Any way you stack it, or Bradley does…all lined up is another day in the 31 For 21 Blog Challenge.  We don’t know why he stacks and lines things up, but we accept that part of him and keep finding other things that he can enjoy lining up and stacking.  

Have a great night all, thank you for stopping by! 

So Many Schools, So Little Time...

My girls go to High School at a public school but one that has three tracks for education.  Their school is very small, about half the size of the other local High School.  Their school has no sports and kids come from all over our town.  For sports they have to play at the local high school in their zone.  Meanwhile, kids that live on the other side of town have to play sports at the high school one town over.  It is a very strange and frustrating setup.  So your English class could have athletes from either high school sitting side by side.  Football teams are rivals, but as yet there have been no issues.  This School is full of the kids that are looking for another type of education experience.   Classes are smaller, and your relationships with your teachers are more one on one.  I am still mixed on the experience.  Where the girls are: there appears to be some oversight, let the kids have their opinions without censorship...disagreeing is not a cause for bullying.  So I guess that’s a win.  Makes it easier for the girls to choose who they want to spend their time with, give their opinions, grow into who they want and hopefully, are meant to be.  I’ve got pretty strong willed kids, they are less likely to follow into something they feel is not good for them.  That’s a relief.  Even as they go and enjoy the sporting events: football, probably basketball, then baseball and volleyball later on this year...they tell me what they hear and what they see in terms of the kids and their drugs and their pressure for troubling behavior.  They know their way and they don’t need my guidance when their own moral compasses are so completely in control and leading the way.  So yeah, we let them go and have fun with their friends.

Bradley is slated to go from this special program situated on an Elementary campus to a middle school, but not the one the girls went too.  And when he is old enough for High School, he isn’t going to go to the same High School as the girls.  A smaller school would be great for him, but so far the school seems to definitely not have the programming for what Bradley would need.  So it looks like he will be sent to school at the High School that the girls play Volleyball for, but won’t Graduate from.  Right now, the girls are dual enrolled in two schools; meanwhile, Bradley is also dual enrolled in two schools: A district program and the Elementary school that houses it.  My kids are going to four schools at once.  That’s keeping track of four school calendars even though two of my kids are at the same school.  Good grief!!!  ;-).

So my girls went from these bigger schools into this smaller school, and Bradley is going to keep getting into bigger and bigger schools.  And I honestly don’t have any idea how that’s going to work for him.  By the time he gets there, both of his sisters will be out of High School and nowhere around to look out for him.  It’s not that they really look out for each other at school, but I mean they could in theory if they had too.  So that’s a bummer.  At the same time, we watch as this town keeps making changes to the schools here, and we’ve seen a school intended for those on the spectrum that have extreme behavioral issues and can’t be successful in a special education class at a regular high school, get moved from the center of town, to an isolated site away from the center of town.  Disturbing.   We are watching and taking notes, wondering when the school district is going to come to us trying to push Bradley into this school rather than a main high school.  Between funding and test scores - which affect funding...my little guy is not the kind of student the high school is no walks through their door for registration day.

I have a senior, a sophomore, a fourth grader, and a clock set on fast.  The school has already taken the Senior pictures for the yearbook, sold the cap and gown, and the announcements.  The only thing not early is the class ring.  For some reason, that’s no longer sold at the end of Junior year so the kids can enjoy them - now, a month into Senior year.  When did that change?  Anyway, the only positive to all the early purchases - other than a discount, is to let my brain slowly get used to the idea that I have a Senior so my brain can break it to my heart.  And if this isn’t hard enough...once she graduates...I’ll have a Junior.  Huh?  Oh and worse?  Yeah, it gets worse.  When my Sophomore becomes a Senior, my little guy will be transitioning to Middle School.  If he weren’t on so many medications the idea of my having a stiff drink might be appealing; however, my desire to keep him
safe, just means copious amounts of chocolate will be required.

We still try to keep us on the one day at a time pace, but that’s a pace on a fast forward one day at a time.  We already know the date and time for her graduation, so it’s on the calendar.  We’ll make life work around that one, some events are not missable.  The picture are in, “Just WOW!” Who is that Lady?  And once the class ring comes in we should be able to settle back into a subdued - not quite yet feeling for the next few months...until the countdown begins and then we’ll just hold on for the ride til the end.  Time flies folks, whether you want it to or not.  Today it’s the Madison, when I blink it’ll be Sydney and one good night’s sleep later it’ll be Bradley.  Maybe it’s not such a bad thing that he doesn't sleep...some things are just worth a small delay.  Sigh....

Happy Tuesday!  31 For 21 Blog Challenge complete.  Different timelines, different schools, but I the end: the babies all grow up.

He Listened!

Working on today’s blog in between sets at tonight’s Volleyball game, cause life may stutter step for us, but it rarely slows down.  Dad is home taking care of our sick little guy and so I am here to keep cheering the girls on for this volleyball thing.  Divide and conquer...or something like that.  Sadly, our girls fell short, but Sydney played great and Madison also caught some play time with an excellent hit.  So that was pretty darn cool too.

Bradley is still sporting a fever but the raccoon eyed mask that he was sporting continues to fade, though it is still rough to look at his sweet face and know how hard this is for him.  But he’s a trooper all the same.  The only part that has been slightly appealing these last five days is the amount of cuddling he still likes to have when he is sick.  It’s always nice to know that when you’re kiddo is sick, that they still find their comfort in you.  And when they are busy growing up and growing away from you trying to become independent- the reminder is nice, but it would be better to not go through the illness parts.

Bradley is delayed in his development.  So we are slowly getting where we need to go, not glacier speed, but definitely can give a tortoise a good chance of beating us if we were to race.  Speech is an area of course, and probably because of all his medications and medical issues, he isn’t potty trained as yet.  We try every time we get a long break, but there is just something missing in his making the connection for having to go, to going.  I mostly believe that this is going to happen...but I also kind of still believe in the reason for Santa.  I mean I believe in God and though I admire his work and see his touch in most things - I’ve never met him or seen his face...so who’s to say about that Santa fellow?  Either way, my leanings towards the world of fantasy are not the discussion here tonight.  For the most part, I believe that Bradley will someday be potty trained.  On that day there will be great celebration and potentially a party at our house.  😁

So yeah, things come slowly...but as I was talking about making connections, there is a great joy in watching that moment when he makes that connection.  So let me tell you a story about that one victory in this long battle of Bradley learning how life is connected.

I drive a Chryseler Pacifica because we finally conceded that with three kids quickly surpassing their mother in height, we really needed more room.  A perk of the van is that there is a built in entertainment system with screens on the back of both the front seats.  So Bradley can watch a movie, and since they come with headphones, he can listen with his headphones and not drive me crazier than I already am.  Bradley also sits in a car seat still.  He’s only 56 pounds; maybe less after this illness, so he really needs the protection.  He still sits in a five point harness because anything less and he is out of it and messing around in the van while I am driving.  As it is, he will sometimes try to squirm his way out of his harness belts.

The other day, Bradley figured out that he is big enough that now he can reach down and loosen the straps by pulling on the lever.  Loosened straps and he is pulling his arms out and trying to push himself out of the seat.  Not fun when I am driving down the road, panic inducing when I am on the highway.  The girls help force him back in when they are with me, but the other day it was just him and me.  Talk about a showdown!  I yelled at him to get back into his seatbelt and he stared back at me like I had two heads.

Angry, I reach back and shut down his screen.  I’ll show him!  What does he do?  Become even more dangerous as he leans forward in his seat and reopens the shutttered screen.  So I am left to fuss and fume, looking for a place to pull over.  But then it dawns on me, I have control of the whole system. So I reach over and turn off the power to the screens. And I tell him, “No seatbelt, no movies.”

I’m still angry and looking for somewhere to pull over, but I notice movement in the rear view mirror.  And as I watch, he carefully puts himself back into his five point harness and sits back in his car seat. He and I make eye contact in my mirror for a second (that seems like a lifetime) and I tell him “Thank you.  I’ll turn your movie back on.”  And I power it all back up, he has his headphones on and goes right back to watching his movie, and  he doesn’t try to squirm out of his harness for the remainder of the trip.

I was stunned and so excited, I shared his story with all of his therapists and his teacher.  And now with all of you.  There’s just something so special about a moment when you get to be present when you see your little one understand.  I still put the regular seatbelt over the five point harness - to keep him safe AND because I’m not crazy.  Overall, we do have less escape attempts.

So yeah, an exciting moment amongst the many moments that make up our life with Bradley.  And a win for momma for sure - though we all know keeping Bradley safe is the greatest win of all...

It’s late and time to chase Bradley to sleep and hope for less time together in the middle of the night. Closing out the 31 For 21 Blog Challenge For Acceptance and Awareness.  Have a great night.  See you all tomorrow!

Finding the Small Bright Spots

Welcome first Sunday in October.  In our house it was a pretty quiet day: Eric and I went for a walk and then came back to keep Bradley from scratching his hives and still fighting that fever.  Looking back on the day, I almost forgot that we snuck out for a half hour walk to clear our heads and remind our bodies that exercise is a thing, even when the little boy is so sick.  Just like I forgot that me watching "Downton Abbey" at 2 in the morning was actually part of this day too.  Benadryl is a four to six hour med, the doc wanted six...I pushed to just over five because the little boy was ready to crawl out of his skin and needed the relief.  I know, I'm a rebel...but take heart friends - in some galaxies far, far away the Rebels are the good guys... sooo there's that.  We were able to push the Benadryl back to six during the rest of our day so that's a win there too.

Lots of negatives this weekend, and a little harder to find some bright spots, but I will anyway.  The dark can be a frightening place full of monsters after all, so finding the light is something we must always attempt - no matter how small the light or how hard we have to look.  Here's mine.  Bradley is terrible about chewing his shirts and sucking on his hands...like gross and so hard to listen to and prevent.  When he has his movie he hates when I sit beside him, he knows that every time he puts his hand in his mouth I will take his movie and as soon as he takes his hand out - I give it back.  Too bad I cannot be constantly beside him, he knows to wait me out.  Bright side?  He knows to wait me out.  He knows that eventually I have to make dinner, change the laundry, fold it, put it away, clean the house...something - anything to give him his peace.  Half the time I am cleaning up the living room because it takes him ten seconds to turn it in a disaster site while I am taking care of something else.  He's pretty good about cleaning up, but it takes a while and once he's done, there is an inevitable new chore I have to do and as soon as I leave the room he dumps all the blocks to find all the four squares or all the eights...dumping the ones he doesn't want...or he wants all the square magna tiles and not the triangles... again...wait me out and he can take care of his business while I take care of mine.

These last few days he has been so miserable that he hasn't once put his hands in his mouth.  I would like to hope that of all the horrible parts to these days we could have one highlight and that being that he never forgets the connection of not wanting to suck on his hands.  Nothing would make what he has been through worth it, but I wouldn't begrudge the sleep loss for myself if I could have that lasting benefit.  Only time will tell on that score for sure.  So that's been a small win, albeit a heavy price...so as with most things Bradley - a mixed bag for sure.

We've seen some other behaviors that we haven't really seen before.  He has acknowledged that he doesn't feel well, and rather than fight it and us...he has willingly chosen to lie down in his bed, or crawl into one of our laps for comfort, or snuggles, or a nap.  Today, after venting and meds, he chose to spend the next thirty minutes lying in his bed, mostly rubbing his legs.  Since he wasn't scratching them, we let him be and just kept an eye on him through his camera.  After about thirty minutes, he went to our room, that's when I joined him.  He was half on and half off our bed, so I put him up on the bed and asked if he wanted to lie down with me.  He doesn't answer in words, instead he just lays back and then hugs my neck.  If I rub his palms, I can keep him from scratching and ease him to sleep, he needs all the small naps he can get for sure.  When the hives go away and the itchy rash disappears again, we can worry about straightening out his days and nights - until then, the battle is hard enough without fighting the whole war in one sitting.  For now, his understanding and small attempts at communicating what he needs is all positive.

We even used the Speech iPad, with him letting us know when he is frustrated and wants to play with something different or wants his milk.  Small things, but important things in his world.  The best part?  When he has his headphones on, he will slip one phone off an ear so he can hear his iPad's voice, then when he has accomplished what he wanted to ask for, he will put the ear piece back on his ear.  It's pretty stinking cute!

I've been bolusing milk and juices to keep him hydrated and fed (I use a 60ml syringe to push fluids through a tube into his G-Tube)...yesterday mostly juices and today we moved to increase his calories.  I think the increase in milk was enough to stimulate his desire to use his straw cup a little more and I am thrilled to say that he even chose to feed himself some bites of mac n cheese; the ultimate in comfort food, at dinner.  As per his feeding requirements, Bradley knows he has to drink his juice after every bite, so at dinner that's what he did - took a drink after each bite.  He didn't have a whole bunch to eat, but he sat with us, gave himself a few bites and drank...it was a win in the books for sure.

Hoping tomorrow brings a healthier boy, a feverless boy, and a happier boy.  And if he happens to be a hungrier boy, that will be a happier mom and dad too.  Small steps, because in our world those really count, and every connection made is one more milestone that we eagerly wait to see, no matter how small.

Hope you all had a great day.

Thanks for stopping by the 31 For 21 Blog Challenge for Down syndrome!  Have a good and peace filled night.