UPDATE! A Tribute!

UPDATED!  I added the YouTube Link.  Okay,  here's the sappy tribute to Javy's elementary career.  This is for my benefit but I still want to share it and hope that it gives everyone who has never met Javy a little bit more of his personality.

If you've viewed any of my past photo montages, you know that the selection of music is very important to me.  I usually sit and listen to music for a while before I even start to look at photos, just to get in the mood.  I almost went the sentimental route, because it is after all, just for my benefit.  Something for me to sit and watch and feel a bit nostalgic over.  Sniff, sniff!  Then I started to work the photos into Bob Marley's Three Birds because that's what I sing to him sometimes.  Mostly, its a gentle reminder for myself, too.     Everything WILL be alright.   But that song is overplayed and even as I was working on the movie, there was on a commercial that kept playing over and over.

Suddenly, I was inspired to go a different way and I think it works out perfectly!  So without further ado, I give you the Beastie Boys and Javy's Fight for the Right to Party!  Click on

http://youtu.be/WY8uOK80ybA

Naan, Y'all!

Today is the last week of Javy's elementary school career.  I know, a lot of parents have been through this before, even my own.  But I still am getting a little nostalgic.  So I'm working on a big photo montage, highlighting everything. Actually, Javy started preschool when he was three so his career is a little longer than most kids.  But I will have that by the end of the week.

Tonight, I want to talk about another unique situation we have.  Bread!  Javy doesn't necessarily have any dietary restriction, he can eat anything and does, anything in his path.  He doesn't have any issues with swallowing, so we're really lucky.  But one thing that he doesn't have is the ability to control how much he puts in his mouth and how fast.  It's like whatever is supposed to click in his brain to say, "Hey!  You can't stuff that whole cheeseburger in your mouth at one time.", does not click.  Javy cannot, at this time, have a whole sandwich and enjoy how the layering of certain ingredients can make your mouth sing.  We can cut it up for him, but c'mon it can't beat picking it up with two hands and taking that first bite of a fresh cooked reuben sandwich.

What we have to do is cut everything up in small, bite-size pieces.  If its on a fork, he will pick the fork up and put it in his mouth.  On that note, we also have to watch certain textures, like bread.  With chewy bread, he has a tendency to not follow through on the chewing bit and swallow things whole.  

You may be asking, "Why not just buy bread?"  Hmmmm, we have for many years bought the split whole wheat at Costco.  As a family we don't eat bread that much.  I tried the multigrain rounds, too.  But here's the thing, look at the ingredients.  It's hard to find bread without all the preservatives and extra crap.  And its expensive.  My quest has been to find the perfect bread to bake.  I believe I found it.  It's a recipe that I found for Naan, the traditional Indian flat bread.  http://www.spicytreats.net/2013/04/naan-naan-recipe-without-yeast-naan.html  Sometimes, Naan can be chewy, too.  But this one is not and it's just right for Javy.  In fact, I'm in love with this bread.  And it was sooooo easy and fun to make.

I pretty much followed the recipe. I don't tweak bread recipes too much because I'm still learning.  I didn't use multigrain flour, I used whole wheat organic.  The recipe tells you to use a tawa and I have no idea what that is.   I don't have too many fancy cooking gadgets, besides my tortilla press.  Being the queen of improvisation, I used my flat cast iron griddle and my large stock pot lid.  It worked most excellently.  I am really excited about this because I love it when I find success in simple things.  A boy needs a conduit for his peanut butter.  

Pancakes!

The perfect pancake is a sacred thing.  I've spent many mornings trying to perfect my pancakes.  It might be an obsession, I don't know, but it's one thing I can say that I love about Sunday.  By the way, I'm doing much better in my pursuit of loving Sundays.  I've decided that my Sunday music will be U2, my all time favorite band.  Believe it or not, Saturday's music is country.  I'm not a huge country fan, except for old outlaw country, like Waylon Jennings and Johnny Cash. It makes me nostalgic for my grandpa and fishing.  So I listened to U2 while I made Javy's banana pancakes this morning.  I felt happy.

Back to the perfect pancake.  My mom's pancakes are the best-light and fluffy and slightly sweet.  But if you ask her how she does it, she's say, "Buy a box of Pioneer, if you can find it."  So I've set out to make the perfect pancake not made from a box.  The best recipe that I've found comes from my Mayberry Cookbook.  Yes, I have a Mayberry cookbook, my grandma got it for me a long time ago.  As far as I'm concerned, Mayberry is Utopia and Andy Taylor is the perfect man.  That's why I'm not married, I've never found a guy that comes close to Andy.  Yet!  I will.

 

But I do know a few of my mama's secrets if you're interested.  I always mix the dry and wet ingredients separately.  I add cinnamon to the dry and vanilla to the wet, even when it doesn't call for it.    And it should only be stirred enough to get the dry, wet, if that makes sense.  Otherwise, it makes it too cakey.  And eggs, sometimes I add an extra egg just to make it even fluffier.  Pancakes are one of the things that Javy will always eat, even when I fail.

I'm also a maple syrup snob.  After my grandparents took me to Parker's Barn in New Hampshire, I could never go back to maple flavored stuff.  Sorry mom.  So me and mom got one pancake and then I made Javy the rest.  I freeze them for his breakfast during the week.  And Lord, I could not find my stash of real maple syrup.  So I took some coconut oil and mixed it with a little vanilla and Splenda.  It was pretty good.

Here's to Sunday and Pancakes!  God bless!

No limits!

It's aloha Friday, and I really have Saturday and Sunday off.  And you know how much I love my Saturdays and I'm learning to love Sunday.  Not too much brewing in my mind tonight, except working out and a glass of wine after Javy goes to bed.  So I want to leave everyone with a picture that I took the other day at the Honolulu Airport.

I love this picture for what it represents to me.  First of all, Javy is standing by himself, holding onto the window frame to support himself.  I'm a few feet away, but not too far away that's why I couldn't get all of him in the shot.  I wanted to be close enough to dive if he started to fall.  But he took the steps over there with my support and then grasped onto the railing because that's what he wanted to do.  And he never came close to falling.

And it makes me think the skies the limit.  We're going places and there ain't nothing gonna stop us.

I hope everyone has a great weekend and remember that the world is yours.  

A WTF? Moment!

I know everyone wanted to hear about the big doctor's appointment, but that wasn't the only thing that happened on our trip to Oahu.  As always, we learned something new and I gained a new perspective that I want to share.  Or at least, I'm still trying to figure out.  On the bus ride home, we actually got the same bus driver that picked us up and she was really cool.  I even feel like I made a new friend.  Of course, I had to show her Javy's surfing pics.  But I digress.

On the way home, somewhere downtown, we picked up this guy the bus driver seemed to know.  He used leg braces and the hand canes for walking.  Before he got on, the bus driver said, "Oh, Oh!  Here comes trouble.", in a joking tone.  He got on, and sat in the handicap row across from us.  I smiled and nodded, my usual greeting to strangers.   He just kept to himself, didn't acknowledge Javy and started talking to two ladies a couple of rows back.  You see that's the thing I've learned about people with disabilities.  There's no club.  You can't assume that just because they have a disability, they're gonna automatically warm up to other people with disabilities.  They're just people.  So I wasn't surprised that he didn't talk to or look at Javy.

A couple of stops later, we pick up an elderly lady.  After the guy moves his canes, she sits on the far opposite end of the handicap seating, facing us.  I noticed that she was carrying a canvas shopping bag with a big box of those Cabaret crackers that you can buy at Costco, you know the one that has the five smaller boxes.

So we ride through Chinatown, the guy is still talking to the ladies about movies.  He still never acknowledges us or looks at us.  But overall, he's very friendly and talkative.  I don't take offense.  The elderly lady is just staring straight ahead, with not much expression on her face.  I'm talking to the bus driver.  A couple of blocks later, Javy starts making some noises and laughs because he's trying to push the "Stop Requested" button.  Its then that I notice that the elderly lady is smiling at Javy.  She looks at me and says, "Does he like crackers?"  I said something to the affect of yes he does.   Thinking that she wants to give him one from her big box, I quickly add, but we just had a huge lunch.  She then indicates that she wants me to take the box in her bag.  I still try and refuse, so the guy is like, "Well, she doesn't want them, I would like them."  The lady quickly turns really sour and says, "No!"  And then she immediately smiles at Javy and says, "Just for him."  At this point, my only choice is to take some crackers, I'm thinking, so I reach for the box.  I start to open it to take some and she's like, "No, the whole box."  Then its the back and forth, all over again.  No, I couldn't.  Yes, I want him to have them.   Okay, no choice.  I take the crackers.  Meanwhile, the guy is kind of pouting and complaining at the lady.  And she just snaps at him and says "No!  None for you!"

At this point, it was kind of this bizarre WTF? do I do now moment.  I'm pouring out my gratitude to this lady for being so kind to my son, while she is seemingly being very mean to another person.  Yikes!  In my mind if someone is asking point blank for something with no pride, they may need the crackers worse than we do.  So when she got off the bus, I let the guy pick out two boxes.  She left the bus still insisting that he couldn't have any, btw.

I, also, left out a minor detail.  The guy was African American and the elderly lady was white.  I don't want to judge, but there's a chance racism was involved.  Really, does it matter what the intent of the lady was, everyone got blessed.

After that, the guy started talking to me.  It became clear that he did have some kind of hidden disability, like a social disorder.  He was extremely paranoid and stated that 99% of the people of the world were bad.  And pointed at that lady as evidence.  I sincerely feel really bad for this guy, because to me a physical disability is nothing compared to something inside your head that makes you fear everything.  He said that he felt the government should monitor everyone so that we could be safe.  Yes, he probably is one of the people who calls the FBI, even, just to let them know what is going on in his neighborhood.

I wanted to tell him to just hang around with Javy for a little while, he seems to bring out the best in people.  But I think that guys got bigger issues.  I pray that he gets some kind of relief.   I view the world completely different.  Everyone is good until they prove me wrong.  Even that lady, even if she was racist, she just gave a half Mexican kid some crackers.  We got to believe that people can change.  If not, what's the point.  

The Big Doctor's Appointment!

So we went to the geneticist yesterday to discuss the test results from Javy's urine analysis a couple of weeks ago.  I don't want to throw any specific disorders or syndromes out there, just yet.  He did give us one, but there's going to be more testing and if the results are positive, we will have a specific diagnosis.  Then I will become the biggest advocate for that disorder that there ever was.  Until then, I don't want to cause any unnecessary predeterminations or judgements.  I've already googled it, and I'd just prefer to wait.

Because you guys have been so great and I've gotten so much love and support, I will give you the basics of what the tests results showed.  Basically, your body is this really complex piece of art.    DNA is the media used to make our artwork and the DNA is made up of all these other really tiny things.  If one of those teeny tiny bits are even slightly tweaked, it can drastically alter how your artwork looks and acts.  Okay, that's your genetics lesson for the day, lol!

Javy's urine showed that he has a high level of uric acid which can cause all kinds of health issues, and after looking at Javy, the geneticists thinks that it is a possibility that it could cause his issues.  The really good news is that there are things that can be done that will help stop the progress of the disorder.  

Now we just to get another urine sample, this time its going to the Mayo Clinic, and another blood test for more specific testing.  I promise I will not wait another two years to get the urine test.  Maybe two weeks because I got to figure out how to get it there before Wednesday, before 10 a.m.  Wish me luck!

A Sincere Dedication to Mom!

I'm hoping that everyone is having or is going to have a wonderful Mother's Day.  Of course, for me Mother's Day is everyday because I actually do have the most wonderful son in the world.  But for me and my siblings, it's a day for us to try make it up to our own mother.  As my sister said, this is an impossible task, but we can try.  We can try.

My mother is an incredibly strong woman, who had three of us, I am the youngest.  I'm not going to go into her personal details, because, well, that is her personal details.  She can write her own blog if she wants to.  But I will go into my own personal details.  I like to joke and tell my sister and my brother (who are a few years older) that we were raised by two different mothers.  My mom was a homemaker when they were kids and she was a single working girl when I was growing up.  My parents divorced when I was 7 or 8, I can't remember.  It's really cool for me, because I got to watch her transform and develop herself.  This has wholly contributed to my character and own ethics.  I know that you can reinvent yourself in your thirties and, again, in your forties and come out stronger and better.  I sincerely believe that we should always be striving to learn and improve ourselves.  And I know, no matter what is thrown at me, if I just keeping taking steps forward, everything will work out.

As mom eats her whole wheat, raw sugar, strawberry yoghurt pancakes, this fine Sunday morning, let it be known that it is a small token to show my appreciation for:

• Retiring early so I did not have to worry about who would be taking care of Javy after school.
• Driving back and forth from Huntsville to Birmingham, at night, to attend birthing classes with me.
• Sitting by my hospital bed when I had surgery in January and sleeping on that pull out chair with your funky hips.  
• Being patient with me with all the stupid boyfriends and giving me the self confidence to realize that I'm better off without the stupid boyfriends.  
• Always putting us first before you own wants.  She could've been a disco queen but she lived for us.  
• Showing me what's important about life-family, love and respect.
• Letting me make my own mistakes without judgement.

This is not a comprehensive list.  I will keep some of the other things private.  

Thanks, Mom!

I love it when doctors, personally, call us back!

Just want to give a quick update on our upcoming genetics appointment and the possibility of a diagnosis.  Today, I had a message from the actual geneticist, Dr. Slavin.  He's the one I wrote about in my previous post, "Is There a Geneticist in the House?"  Personally, I think he's awesome and his awesome meter just went up today.  Not only did he leave a message, but when I called the office back, he was actually available to talk.  We've seen many, many doctors and that's priceless.  Javy's pediatrician will talk to us and we even have his personal cellphone.  Besides that, his nurse is just as awesome to talk to, anyways.  My neurosurgeon, actually, called to check on me after my surgery and I was able to talk to him directly when I called back.  Those are the only ones I can remember talking to on the phone.  My point is that I think that a doctor who returns phone calls and talks to their patients directly is a keeper.  Enough adoration, I know everyone wants to know what the doctor said, right?

They don't have anything specific, however, the tests were positive for things that could cause seizures and delays in intellectual development.  The doctor's actual words were, "There were some really big words floating around in his urine."  Honestly, he told me what they were but I don't remember.  He said the disorders were very rare.  He wants to discuss those things and have a look at Javy to see his physical features and how he's grown and to discuss some further tests to narrow something down.  I can't wait until Tuesday.  See what I mean about roller coasters, though.  I went from being curled up in the fetal position to full blown acceptance.  It just takes me a second to process information and get right with it.

I hope everyone has a great Mother's Day Weekend!

Dinner at Wrangler's

Transitions

Just got home from visiting Javy's next school, middle school.  I am so glad that they allowed us to go visit.  I went with Javy's SPED teacher, one of his Aides, and all the other fifth graders who were transitioning, too.  It's great to have the old teacher and aide share their experiences with the new ones.  And for allowing me to be there, as well.  It alleviated any fears that I had about Javy being with older kids, everyone was so friendly.  A lot of the older kids were saying, "Hi Javy!" because they remembered him from Kekaha.  I know that everything will be fine.

The only issue I have, and only time can heal this issue, is that its always hard to hear new people talk about Javy.  They're nervous about having Javy in their classroom.  Listening to them talk, I'm thinking, "Why are you scared?  It's Javy, he's cool!  Don't worry about it."  (I even showed them the picture of Javy surfing.)  But then I think about it, I can't take it personally.  Imagine having to take care of a nonverbal, non-ambulatory child, you'd never met.  Okay, it would be kind of nerve wracking!  I was thinking about this the other night when me and Javy were doing our bedtime rituals.  I went to lay beside him to tell him a story and he got all excited.  When I started telling him a story that I was making up in my head, it was boring to him (it was something about a boy named Javy swimming with honus).  His demeanor immediately changed and he gave me this look and grunted disapprovingly.  I went to get his ipad and I showed him the pictures of him surfing-primal scream at the top of his lungs, his sound of delight.  So I went through the pictures and when I got to the ones not related to surfing, he went back to the disapproving grunts.  I'm pretty good at reading his face and his verbal cues-the tones and pitches and what they mean.  But I know there's so much more that I'm not getting so its hard even for me and my mom.  It occurred to me then, how do I explain this to another person?

 His old teacher, who I'm sure will cry when Javy leaves her classroom, told me that she was so nervous when she found out Javy would be in her classroom.  She prayed.  Then she confessed that she believes that God was testing her, because it turned out that Javy has blessed her life, tremendously.  She also confessed that she was nervous about me, too.  Apparently, some SPED moms are worse than dance moms. They're like bridezillas- always being demanding and always blaming the teachers for everything.  But I ended up being really cool and supportive.  I know that Javy's middles school teacher will be really good, too.  No worries!    

Flying the Friendly Hawaiian Skies!

I don't really have any particular burning topics tonight.  I was tempted to just go to bed, but I'm going to complete my challenge.  I think its a good time to give a shout out to some people who have always been extremely supportive and that's the Hawaiian Airlines employees.  I know I discussed in an earlier post "The Magical Ipad" how they raised money and bought Javy an iPad, which was awesome.  But they always have helped us out, even before they knew who I was.  It's not easy flying with a child, but it can be even more challenging flying with a quadriplegic, nonverbal child.  We've flown with them when Javy had casts on both legs, all the way to his hips.  They helped me when I couldn't pick him up.  One flight attendant had to keep put him back in his seat for me, because he kept wiggling out.  You should've seen them dive when I tripped and nearly dropped him, coming onto the plane on our last trip.  Just call me, grace!  I see them everyday in the airport bringing people through in wheelchairs and taking care of them.  It cuts the stress of our trips to Oahu by half, just knowing that they are there.   Its an awesome airline and I am forever loyal and grateful.  

Sunday Baking

Here we are again, at the end of a day with a glass of wine.  It was an awesome day, of course, any day of the week is awesome when you believe it is.  Its was my only day off until next Saturday so I had to get a lot of stuff done.  I've decided that Sunday will be the official baking day, it's my therapy.  You have to be a little precise and a little bit creative and then this miracle happens that you can eat.  So here is what I baked today.

For Javy's breakfast for the week, he gets blueberry muffins.  I used the simple recipe from my old Good Housekeeping Cookbook.  Nothing can beat a good, simple recipe book.  Its just basically sweet biscuits with blueberries folded in.

Then I started our Cinco de Mayo fiesta-Tacos made from scratch, including the taco shells and a cheese cake.  This one was low carb and pretty easy.  http://www.fatguyweightloss.com/low-carb-cheesecake-recipe/  The almond flour pie crust is awesome.  Do you know how you make almond flour?  You just crush a bunch of almonds in your food processor.  Cheaper than buying at the whole food market.  But the one thing I would change about the recipe is the Splenda.  I'm going to experiment with alternative sugars, like raw sugar.  But my mom is diabetic so this was perfect for her.  And the recipe is pretty poorly written which I don't like.  Had to kind of guess on a few things, like the fact that sour cream is in the list of ingredients, but its not in the recipe.  Just add it, I think its good to counteract the sweetness of the Splenda.

Homemade tortillas are so good and
tortilla presses make them so much easier to make!

Tacos were a success!  No stinkeye!

The last thing was Javy's snack for the week!  Skinny Chunky Monkey Cookies, and I think I'm gonna get stink eye for these, they're not very sweet.  http://www.sixsistersstuff.com/2012/05/skinny-chunky-monkey-cookies-recipe.html  I like them, there's no sugar.  I made them exactly like the recipe said and they came out exactly like the recipe promised, just the way I like it.

I've got to get up in less than six hours, so goodnight and good cooking, everyone!

Don't I have "Mommy" written all over my face.

I know, I know!  It may seem like I missed two days of blogging in a row, but its 1203 a.m. in the morning here and I just got home from work.  I chose to spend my Saturday morning with my son since he gives me stink eye for being away so much.  Yes, I did miss yesterdays, but I didn't get home until after 1:00am and I was too tired to fight it.

I've pretty much come to terms with the possibility of a diagnosis and I'm at peace now.  It's just sometimes when you wish and wish for something and you finally get it, there's a possibility that it might be scary.  I'm sure that is the second part of all Disney princess fairy tales.  They get home with Prince Charming and then they wonder what do I do now? My goal is to remain calm and just avoid the freaking out phase.  Trust that good can come from everything.  I'll get there.   We've been through so much already, but really in perspective, none of it has really been that bad.  Javy is awesome and I wouldn't want him to be anything other than himself.

But I had an interesting moment, today.  A Co-Worker asked me today, "When am I gong to start having babies?"  I said, "I already have."  What was interesting to me was my reaction, I didn't share it with anyone, I just kind of chuckled to myself.  It was surprising, because I'm thinking, isn't it obvious that I'm a mother.  I don't think about myself any other way.  To me, that is my identity.  I was thinking, "What, you don't know that I'm Javy's Mama?"  There's no reason, he would know that, either.  I guess, I just thought I had it written across my face.  Can anyone else relate?  

Wine and Deadlines

Okay, I've got seven minutes left in the day to complete my blog for the day. I just got home from work, I've had my shower (to wash off the ickiness of work at an outdoor airport) and now I have a glass of wine.  It's all good.  Just want to give an update.  I did call back the geneticist's office just to clarify and it is a follow-up regarding his last lab tests.  But I got no further details.  This confirms my belief that they have a positive test.  I Googled genetic tests that use urine analysis, because he's never had that before.  I found that they can test for metabolic disorders with that method.  I think its pretty new and they're actually doing infant tests that way.  Then I spent the rest of the morning shopping for metabolic disorders.  I'm sitting at my computer, going No, I don't like that one, or That one isn't too bad.  Oh well, life goes on, good and bad.  

The roller coaster ride continues

This is my 11the day of blogging.  So far I haven't had too many problems coming up with topics to write about.  I guess, we do have some stuff going on.  And today is no different.  Just another example of how things are going, going, going and then a dip can come up that puts me on an emotional tale spin.

I am highly distracted, right now!  And it only took one phone call to do it. Basically, I was taking the dog for a run around Burns Field.  Its a beautiful day.  I looked at my phone and I had a message from the Geneticist's office.  They want to schedule an appointment, for a follow-up.  After I got done with the coordinating the appointment with another appointment Javy has for his post-op follow-up, it struck me.  Does this mean that they have the results already from the urine test I gave them about a week ago?  Do we have a diagnosis?  My mind is racing.  Usually, when a test result is negative, they just call and send a note.  The last time I spoke to the genetic's counselor, she said that once the lab got the sample, it would take a couple of weeks and then maybe Dr. Slavin would see him before the end of the year, when they come to Kauai, again.  At least, that's what I think she said, maybe I heard wrong.  I don't know.  I can't find the paper from the last notes that told me what they were testing for.  And it took me almost two years to get the sample of urine.  So if it is a diagnosis, my lack of coordination prolonged it.  Do you know how hard it is to get a sample of urine from someone who isn't potty trained, plus it has to get to the lab on a certain day, before a certain time because they have to freeze it to send it to Stanford's genetics lab.  So I kept putting it off and was like, why bother, it will just be another negative test.  All of this thinking could be for nothing, so I left a message with the genetic's counselor.  She hasn't called back, yet.

All of this going on and on in my mind.  My mom is trying to talk about other stuff, I can't focus on it.  I told her to proceed, knowing that I'm not going to remember what she said, later.  I tried mowing the lawn because that usually clears my head.  The neighbor behind me with the beautiful yard, interrupted me.  I'm afraid, I was rude to him.  He was saying something about the banana tree flower.  I told him he couldn't take it, we were going to keep it.  Then I turned the lawn mower back on and kept mowing.  He just stood there watching me.  No more man, I'll show him no more man.  (That's what he said about me, when he was complaining about my yard.)

I'm forcing myself to even blog about this, but this is what its about.  All parents have similar issues, no matter who their child is.  But this is what its like being the mother of a child with an undiagnosed disorder.  I try to just go on, live a normal life, making adaptations when necessary.  I work, take care of my family, take care of my yard and my home, try to make a safe and good home environment for Javy.  Then just like that things can change.

You maybe reading this, thinking that's great, Doris, a diagnosis.  And it is, maybe, I don't know.