Crystal Clear

Bike of His Dreams or Mine?

Yep- I thought I was going to be the one getting my dream bike but as of right now it looks like Nethan is getting this little hot rod...They had it in pink but since it was only 16" ...it wasn't for me. I also really am holding out for a retro one... Is he not going to just DIE when he sees this Christmas morning? I don't know if he will be as excited as I am... I am just giddy! Bryceton is going to be jealous...but he will be surprised because I went a little wild on Amazon last night and have an extra goody coming for him! Just shows though the earlier I start my Christmas shopping the more I end up spending....

Get Ready to Read!

If you remember, a month back I wrote a post about Nethan and wondering about his reading readiness. Well I happened upon Get Ready to Read! . It is really more focused towards 4 year olds but after things settle down here at least a little bit I am going to sit down with him and find out the results for him. As far as an update in teaching him to read, we initially were able to sit down and do it but lately things are really crazy. He has been able though to master M,N,S, A, E, and T is emerging. He also can write M,N, A, and T. He is at the point he recognizes and points out frequently when he sees them in words around him. Very cute indeed to see him sitting with his little Baby Jesus of the My Very First Bible Stories Series.His little hands turning the pages... he really looks like he is reading... Very impressive indeed for my little 3 year old!

Night Vision Was Definitely Talked About the Night of the Quake

As we sat here in the semi-dark which quickly became pitch dark on Sunday night after the quake with the candles flickering, each of us with our own flashlight nearby (Nethan's- was a cute little one from the movie Cars, Bryceton's was the mammoth yellow one we use for camping, and mine-the long black heavy one cops can't carry anylonger ) and as we ate our P&J sandwiches, it was Bryceton who brought up how he wish he had night vision goggles to guide him on his trek down the long dark hallway to the bathroom or spy on some bad guys should the need every arise.

With Halloween around the corner and after all the hoopla in Hawaii regarding how Hawaiian Electric, referred to as HECO here, was such a disappointment at handling the power outage, you gotta wonder how soon there is going to be a run on these-   fright goggles to Nethan but highly "cool" to Bryceton...Night Goggles! A dream of his in fact to have his own pair of night goggles. I suppose I should be glad he wants the pair above and not the N NVG-7 Gen 3 SELA 64-73 lp/mm Night Vision Goggle, ATN Select Alpha Grade NVD at $2995!!!!( I kid you not and that is $500 off regular price but they do ship it UPS for free  :-) )..Fortunately they also have an amazing Holiday Gift Guide  that’ll help you pick a sure-to-be-talked-about gift this holiday season at a wide variety of prices.

White Trash Gene Can be Cute

    For as long as any of us can remember, Nethan has been whacked out crazy in love with cars. Initially it was more Hot Wheels and actual cars than trains and airplanes. However over the past few months he has become completely enthralled with Monster Jam and Monster trucks. I have TiVod it daily and he watches it after school while I help Bryceton with his homework. It is strange to me how he knows all the names of the trucks and has even picked up the name of many of the "moves" the truck makes.

Teach Your Child to Read in 100 Easy Lessons

    When Bryceton was around 4 he was showing a lot of signs as far as reading readiness.  I won't quite list all of them because the point is which I will get back to in a moment, is that Nethan has been showing signs of reading readiness for a very short while. Bryceton showed them for quite a while before 4 but I wasn't especially quick in picking up on them figuring the Pre-school  would be picking up on them and doing something. Wrongo. Didn't and don't believe in that whole dangerous  "Whole Language" concept. So eventually I did a ton of research on the Internet about reading readiness and happened upon this book Teach Your Child to Read in 100 Easy Lessons. I don't quite know why I chose it other than it kept coming up. I also purchased several other books but none of them was as easy and straightforward as How to Teach Your Child to Read in 100 Lessons. The book tells you exactly and I mean EXACTLY what to say. There is only a need to review rather quickly before you start as to what you will be doing. The system to teach your child makes sense and is phonetically based. The instructions on what you say are printed in RED so it is easy and simple. Later in a conversation with Mark at CARE he told me it was exactly the book he and his wife , who homeschooled their kids, also successfully used to teach their kids to read! Of course I think I remember we both agreed the main thing is to just really read to our kids. Read daily. And I had and still do read to the kids. And Bryceton and I both also read even when we aren't reading together the three of us. So Bryceton and I kept up the lessons and at some point we kind of added other books (Clifford books helped a great deal and the Bob books ) and finished up the 100 easy lessons in a spurt. So back to Nethan. It probably also is the younger sibling thing and that I am far more astute this time around, but all of us, myself, Nethan, and my mom have felt Nethan is hungry for reading. When I asked him, as I had to Bryceton year ago, "Do you want me to teach you to read?" The answer was exactly the same...a resounding "YES!!" So since I gave my copy of Teach Your Child to Read in 100 Easy Lessons away, I ordered it and received it in the mail yesterday. I still am not quite sure how much or how well or how long this will go but tonight was a total blast for the three of us. With Bryceton we did try to use the writing exercises which definitely did make the lessons to read 20 minutes or longer. I eventually gave up as his interest wasn't there for writing and I figured he'd pick it up eventually in school. So with Nethan we are going to just mainly be focusing on the actual 100 easy lessons to read. Tonight as I was saying, we had a blast. Bryceton is also terribly interested in being a part of teaching his younger brother how to read in a 100 easy lessons. He did his part very well praising Nethan and being patient and really being intuitive knowing Nethan was getting tired although begging to go on some more. He was also impressed he learned to read in 100 easy lessons and figures Nethan should be able to do it too. He got a kick out of it being the same book I used to teach him to read. As far as signs of reading readiness which I mentioned at the start... I am going to initially chalk it up to Mother's intuition and espcecially Mother's intuition the 2nd time around. I think it has to do with:

• Interest and wanting his own books
• pretending to read
• Coming to both of us with books and saying READ this to ME!
• Knowing he has recognized his own name for a lonnnnng time and can pick it out
• Knows the letters of the alphabet at about a 75% rate.
• Understands although it is say a letter B it SAYS Buhhhh. Lots of kids get caught up on this issue. When he would get confused I would switch in an animal like what does the Cow say? The cow says MOOOOO the B says Buhhhh....

So there you have it. I will keep this updated as to our progress with Nethan and know I truly can't recommend this book highly enough. Even if it doesn't work with Nethan right now... I know it will eventually or it will be a part in Bryceton and I teaching him to read together.

Twas the Night Before School

'Twas the night before school started! '

Twas the night before school started
When all through the town The parents were cheering. It was a riotous sound.

By eight the kids were washed
And tucked into bed
When memories of homework
Filled them with dread

New pencils, new folders,
New notebooks, too,
New teachers, new friends-
Their anxiety grew.

The parents just giggled
When they learned of this fright
And shouted, "Upstairs!
GO TO BED! IT'S A SCHOOL NIGHT!"

I think having Friday be a parent/student orientation and meet & greet with the teachers was a brilliant idea. Nevertheless, it is funny how our time has been rather unstructured the past few weeks and now we are thrown right back into a whirlwind of events.

So both boys are bathed and in bed at just a tad bit later than I would prefer. I usually have them start a school night bedtime a few days ahead of time after a break. And 6...yes SIX alarms are set at intervals to get us up on time... I know it sounds pathetic but Nethan is really the only early riser and even then he usually picks the weekend to get up early.Clothes are all set in their little closet cubicles for the week (great thing I bought that is a godsend), Bryceton's backpack is already in the car and both the camcorder and digital camera are ready to go.

We have decided to have breakfast together the three of us at the school this year which will be a very nice little thing we can do to start our day off in a good way. It also will save clean up time and get us a nice parking space to boot! Both boys will be having warm lunch so no worries there.

The suitcases are ready to be filled for the cruise and there are piles of clothes ready to fill them. I had planned on being packed by tonight but the house was really awful and needed a deeper cleaning. More times than not it feels like we are camping in doors. I remind myself this is a tropical place...daily...if not hourly. I also remind myself Geckos are friends not lizards...After all they eat the bugs that bother me more than the geckos. I much prefer Geckos to cockroaches, ants, and the dreaded centipede. Ohh and those centipedes are really nasty buggers. They are so large they are more like a small animal than a bug...You can hear them click their little legs...Creepy...

I have started to load up the ipod but it is very bittersweet since my external hard drive crashed several days ago. The hard drive housed all of my mp3s as well as the vast majority of every digital picture I have ever taken ... I have someone who is going to try to recover the data so I have stopped weeping at least for now but it probably won't be in time for the cruise. I have for reading. Not quite light reading but oh well. If you have some suggestions for me to take along, please let me know. I love to read books suggested by others no matter the type. In fact the best books have always come from someone else. So please share with me your top picks. Otherwise I do have a few others to take along as well. Before kids I would have needed about a book a day... now with kids it is always hard to know how many to pack. I am figuring 3 for a seven day cruise. Then again there is the internet and weather factor too! If the weather is bad I am likely to be in the internet cafe surfing and blogging away.

I am so very pleased and relieved my grandfather is indeed coming on the trip. I know he has some anxiety about the trip but it would not have been right to not have him with us and I really feel he needed to go as much for all of us as for himself. I mean how could we possibly describe to him the fun it is going to be to have all of us at the family night club? Nethan and Heather are both dancers. And I have to tell you, Nethan doesn't just like dancing... he is honestly good at it. The boys got riddim, far more rhythm than myself or his brother.

The first of those 6 alarms is going to go off far sooner than later so the packing and trip preparations will have to wait a few more hours.Send in those book suggestions!

Hodge Podge

Whoa what a day...in the interest of trying to head off my recent bout of awful insomnia, I thought I would dump it all here.
    So here we go...It is nice to feel appreciated... I don't know if I really am but it feels like it right now at my new employer and that is very nice.I will definitely take it..Being a mental health professional has far more going for it in many ways for me than an Execuative. Especiallly as far as quality of life is concerned. It really reminds me of what it is like to come out of an abusive relationship where your sense of self was slowly attacked and demeaned and degraded over time with seemingly simple little things but they all add up to leave you demoralized and detached from your true self. Abusive relationships have a way of making you question whether the sky really is blue.... They see gray. They see clouds. You see sun but insidiously over time...not in a bang against the head you can defend and rationalize reasonably and run away quickly ..but slowly their poison invades and seeps into your life and your mind and soul and self..Terribly trying to remain sane when you are in an abusive relationship. Although movies of the week would have you believe these abusive partners come with a blaring neon warning sign.. they don't. Very few people are complete 100% monsters. The vast majority are not evil  or evil all the time. They always have good points too. Perhaps the most sad part is they never recognize themselves as abusive. They truly do think they are right and that is the way things are done. They think if you could just behave the way they want you to behave there would be no problems. Having been caught up in their small little world, staying on the offensive as a defensive tactic they are not fluid or open or flexible. They find it hard to listen or question or answer your opinions and points as it would rock their very sense of self and thus their world. Truly the options are to end up depressed, psychotic, or to leave.
So you leave, you initially are joyous at the realization the sun really and truly is bright. You start to regain your sense of self and trust in your ability to be happy again. You don't cringe or feel you are walking on egg shells waiting for the next shoe to fall. However, in this case , out of Crystal Clear necessity, ending back in a work situation, you start to feel anxious and a bit uncomfortable when things do go smoothly and sanely as you can't quite trust it really is ok. After all at first you thought the other place was going to be ok too.... Very very unsettling. Same thing for women/men after they leave a domestic violence situation. Definitely a form of brainwashing and definitely a need for detox.

Bryceton & Nethan will both officially start school on Monday. Today there was an orientation at the school and a meet and greet the teacher. As Nethan just qualified for Special Ed yesterday, he wasn't completely and officially enrolled yet so we didn't know what classroom will be his. Both boys are excited Nethan will be at school there too. Very very cute. Adorable. I can't quite fathom Bryceton is a 4th grader. Holy Shiznit. And Nethan... my little babylicious.. my baby is off spending the night all by himself with Grandma and Grandpa. Bryceton is with a friend  and here I sit... preparing for the cruise  and trying to repair the damage they can effortlessly inflict...and well playing with my new cell phone.

    For a bit, I have started to feel very uncomfortable here on my own blog. Initially and still for a very large part, this was and is a fantastic place for support and for genuine thought provoking conversations with people who differ in their opinions from my own. However, at some point it ruined it and seriously spoiled it for me. Context for some reason is/was completely lost or misconstrued by some...whether on purpose or stupidity..Of course other bloggers completely get it ...The others don't or won't and ... well my best guess of an answer is jealousy and pettiness. But jealous and petty people can inflict serious strife and there is a risk involved in blogging I never ever anticipated and won't sign on for! It shouldn't have to concern me. I have thought about different scenarios...and the most appealing at this point in time was to take the most personal posts to a very anonymous blog.... and to continue here with the usual as well as delving off into some more creative aspecats of blogging such as vlogging and podcasting...So that is what I am thinking of right now... allows me the creative space to put together some multimedia presentations and those of you who know me and care for me in the blogosphere sense of the word can email me and gain access to the topsecret blog...

Hugging My Munchkins Extra Tight

    Dan Rua of the  Florida Venture Blog writes a very touching as well as inspiring post in his:
My Hope for Tyler's Hope.

 Tyler Staab has been diagnosed with Dystonia, a severe neurological disorder, and  underwent the second phase of Deep Brain Stimulation Surgery  just a mere week ago on July 21,2006. His father is maintaining a progressional diary on Tyler's progress and in a recent post he cautiously shares their fledgling hope at Tyler's impressive progress already. Yay! GO TYLER!!!

Longtime readers may recall this blog started out over two years ago writing about our struggles in dealing with Nethan's developmental delays, lack of pooping at all, and our terrible struggles at getting adequate medical care. Although we still have no definitive diagnosis to hang a hat on, he remains on a double dose of the adult prescription Miralax, and qualifies for Special Ed services under Developmentally Delayed and speech therapy, stories such as this hit very close to home and touch me and my heart deeply. I hold Tyler and his family in my prayers and will be closely following his recovery. Take serious note, Tyler could just as easily be one of my sons or yours... do what you can and all you can...Shoot even a blog post such as this or this puts a little bit more out there into the blogosphere...Imagine Tyler's excitement to know he is being featured and honored and talked about on blogs around the world! Believe me I know very very well what fun it can mean for a young boy. Bryceton has me checking my blog as often as he can goad me to see if there have been any more comments on his Vlog posts!

When it is so simple to make someone's day better by doing something simple and easy...isn't it absolutely Crystal Clear what you want to do and should do?

Get Me Some of That

Several longtime readers wrote over the past few days asking about us and well it seemed like the time to indulge myself..How sad is that? Writing on my blog is considered indulging myself?

At first the comments about me handling my job and doing well seemed so strange to me because I don't feel like I am handling it very well. Of course there are moments where I feel ok and fine and it is a great match. However there are just as many moments in the past week or so where I am just absolutely overwhelmed I am going to not make the grade and am not going to make it past my trial period of six months. I don't think it is my personality flaws that are necessarily getting in the way either. I think it is a phenomenally difficult albeit challenging position. I am the third person in 2 years. My boss is the last person to have held this position for any length of time which adds its own dimension to it. Then throw in the part that I am sleeping in bed with the two boys and living with my parents and have a 45 minute commute and my thyroid meds are off and well ...I think I am doing quite well. Just maybe not good enough for their needs...then again the length of time it takes to recruit a new person ...and accreditation and RFPs coming up...well they might best be stuck with me and working with me...Frankly at this point I have just decided to find my own way through it... I think it is a good match. I like the work I am doing. I think I am uniquely qualified and unless they find a single woman with no kids with my experience...they would best to stick it out with me as well. Also as a side note, if and when I get the Hawaii license as a Marriage Family Therapist , I will have solid job security and marketability.

Biggest news is Nethan starts Pre-school tomorrow.What an event this shall be considering he just fell asleep on my lap about 10 minutes ago and it is midnight...He will definitely be better off on most every account. I just still can't help but worry and be concerned about the long days he will have ahead of him. I also wonder about him and his stubbornness in fitting in and dealing with their schedule. He is definitely head strong and very stubborn. For November he will be going three days a week. That is terrific in my book. By December he will be full time.

The home I want is not available for unknown number of MONTHS.No reasonable explanation. Looks fine except it is missing washer and dryer but the mgt company/dev't company  won't release it. Because of the stress of living here and it is by all accounts by all individuals stressful..I have decided to take another unit which is a duplex with the plan to move to the other unit in several months. This will either help things a great deal or will push me right over the edge.

My other blogging news is that I am about to also be involved with the Hawaii Association of Marriage and Family Therapists as a member of a team of spokespeople regarding mental health issues in Hawaii. Highly likely I will also be a board member. As I will be preparing and presenting testimony, I anticipate writing it up here on my blog and getting feedback and certainly having readers email the legislators wouldn't hurt either. So look forward to that. Which also falls into line with my realization back when I  was looking for work, I write better and think better when I am blogging. It helps me get past the writer's block and makes writing and communicating much easier. Not to mention, I like blogging, I miss blogging, and I really enjoy and treasure the relationships I have developed. The support and interest mean a great deal when I feel like I have the past week or so......very very lonely...very very alone...So don't write me completely off...

Full Battery

Yes, a full battery. Last night I started to post and I could barely get it to post I was alive. Tonight it is strange to be back to posting. True to form there are 164 billion things I should be doing and yes... I know I am exaggerating. Gimme a break.. it is after all my blog.

A week or even two days ago I would have told you this blog was a done deal. I just couldn't keep it up any longer even though I still wanted to keep it and really didn't want to end it. Last night and tonight are different in that I am trying something a bit different in comparison to the past 6 weeks or so. I need to spill... I need to connect. The connections I am making at work are not of the type I can spill the beans and connect on a personal and meaningful level....

First off I owe a huge apology to the Cotillion gals as I had a post with all the links and write ups ready to post and then somehow closed it and left it in draft status thinking I had posted it...I also didn't have the keys to our/their spot on mu.nu. How awful to have let so many wonderful women down. Part of what has stopped me from posting in addition to the new job is that back on October 8,2005 I sat for the Marriage Family Therapist license here in Hawaii. After being licensed in Ca for 10 years you wouldn't think it should have been such a big deal. However, it was a big deal since I had the new job and the test had a very different focus than the licensing exam I took in Ca back in 1995. I put in as much study time as I could fit but I won't know if I passed or failed for another month or so. I am not placing any bets on whether I passed or failed. I just know if I have to take it again next year I will most definitely pass.

As for the rest of the update. We are still living with my very patient and loving parents in their 2 bedroom condo. I have about an hour commute each way most days. Some days I stay here in Honolulu and the drive is about as bad as driving out to Ewa. Poor Nethan is in desperate need of playing with other kids but the preschool at my work won't have an opening for him for another month or two. Poor grandma, as she is held hostage by a beautiful but demanding youngster who is very ...TWO....Poor grandpa as he has his home slowly being consumed by toys and the clutter of children.Although Bryceton seems to have made a better adjustment to school than he had a month or so ago, he is still not as happy with his friends and learning as he was at Open Classroom.

Here you can see all of us at a wonderful and extravagant meal at Nick's Fishmarket to celebrate my job. My job is amazing. On one hand it is a really great match for my skills and experience. On the other hand it is an amazing amount of work and responsibility with a very steep learning curve. The more difficult challenges lately seem to be dealing with my tendency to get totally and completely wrapped up in things that have no ending and to feel guilty for doing things that take care of "me". No the blog is not what I am thinking of in this case...In this case it is enjoying my boys. Being with my boys is taking care of "me" in a way I hadn't realized until the past week or so.I love them so much and in the day to day life lately of scrambling around I almost lost how much I enjoy them and enjoy being their mom. The day to day stuff has to be enjoyed and currently it is very hard meshing it in with this job.

I found us a place to rent that is a whole other interesting story. I have been so busy I haven't even been able to find time to email the head of the development corp. to see why my unit (which I qualified for and gave them a check for on 9/19/05) is sitting there empty , only missing a washer and dryer. Time tics away so I will somehow find the time tomorrow to call them in Texas and then try to post the story tomorrow night. My writing is quite disjointed I am sure but hey...I never promised you a coherent update...I don't know if I promised you anything but I do know I can sleep a bit better tonight knowing there might be a few comments to cheer me tomorrow night.

Still Alive

Show Me the Money Part 2

Hard time believing how much has happened since last time I posted. I still have not fixed the laptop and am most likely just going to re-format the hard drive. Until that happensm, I am here writing on my dad's computer.

The job search has taken an amazing and humorous swing. I am now at this point being seriously considerd for 3 positions. Each of the three positions I would take and feel very good about doing so. Not the best of my grammar on this post and not wanting to take time to edit I am going to outline a great deal of what is going on inside me head and in my life:

• Last Wednesday interview for a position with a start-up org that has a contract with state to provide housing and what not for a portion of the SMI population here. I could tell this woman wanted me. This job is a great match in that I know "group home" stuff and this is group home stuff for adults. I would have a great deal responsibility and liked the woman who would be my supervisor. Great eventual probability for moving into position of CEO. Obvious ability to me to make a difference in the lives of people here who desperately need services. Great feeling as I left. Money talk was left at that I shared with them the salary portion of what I was previously making.They were to call Wednesday with the complete offer and information concerning benefits package. Today I receieved a call saying they were considering me seriously for the position but things were being tweaked a bit and want me to meet with the team and I will get a call next Monday.
• Job 2- Position with the Army as an Adolescent Substance Abuse Counselor. This is actually my "favorite" position. Also honestly the easiest of the three. I have wayyyyyyyyyy more experience than necessary. Also most likely the lowest paying position even though I would go in at at least a Grade 11 with a 25% COLA adjustment for Hawaii. I had an hour 1/2 interview Monday morning and will meet with the woman who'd be my supervisor on Thursday morning. I already had a brief interview with her through a personal contact here so this is more of a formality than true interview. She definitely wants me and the company is in great need to fill not one but 2 positions to be in compliance with their contract. After this interview there is a meeting with a bigger whig in Montana.
• Job 3-This is the wild card position. I was surprised it went as well as it did and that they are moving as quickly as they are...I am so honored and impressed with myself I am even being considered for it. Unfortunately it is largely an administrative position and I wouldn't have the clinical experience with clients. Fortunately I would working with the largest and oldest NPO in Hawaii in the position of Director of Mental Health Services.... This is a fantastic opportunity. Fantastic. Great deal of stress and pressure but I believe after doing this position with this organization and of course doing it with  Crystal Clear style for several years that I would be able to get any number of different positions here or anywhere. The money is yet to be settled but they have checked my references and had requested today's 2nd interview before I had even pulled into the parking lot. Taking into account this is Hawaii, and that is now obvisouly the perspective I must take as I am now in Hawaii... the salary is a good salary for a Hawaii NPO director position.

So there you have it... Most likely the next post will have me posting either a) I have a position and have been hired or b) have receieved an offer and am trying to stall until I can get a higher firm offer from one of the other two... I would take any of these three jobs. If money was the same in all of them I would take the easiest one which is with the Army...but as the single and only financial provider for myself and the boys... the one with the best financial offer is most likely to get me unless the difference is negligible...Definitely exciting exciting stuff....Very exciting. only dampened a bit by the fact that Bryceton is not having the easiest of transitions into school and making friends here. It is getting better and I know it is good for him to face this but he is a great kid who is used to things coming easily to him and so this is a bit of an eye opener. I received the letter yesterday that he did indeed qualify for the Gifted and Talented Program in Ventura. As they don't have a comparable program here in Hawaii, it won't mean much as far as getting him into a program here. Thus things are and will be great for me but it won't mean a whole helluva lot if Bryceton isn't happy and thriving and doing great. Also all three of these jobs are great in that they would be located in areas a great deal more affordable than Waikiki. However, that also means Bryceton will have to go through this difficulty AGAIN... I hate to do that to him...but it so much more affordable and better quality of life out of Honolulu...Please return... I also have another humorous side story and endeavor I want to share in my next post...and please keep me in your prayers. I have thanked and thanked and thanked God for these opportunities and I am truly blessed to be waiting the outcomes... Definitely  more excitement than anxiety but I dont' have any experience in trying to negotiate a higher salary...I do know my gutt was right last week when I had a feeling I would be employed within 2 weeks....So looks like President Adams was correct after all.....

Photo Extravaganza by Grandma

    I was going to place an album on the sidebar but a few of these snapshots taken by my mom just begged for a bit of commentary. For example, this one on the left was taken after Nethan devoured one of Grandma's world famous cupcakes. Nethan is wearing the only evidence of not having eaten every single little crumb. After this it was of course Mommy's turn to give him a bath and get him all cleaned up so Grandma could wrap him up snug as a bug in a chenille blankie.

So darn cute one snapshot was clearly not enough.
    When he isn't making a mess or being cleaned up from having made a mess, Nethan also likes to hang out with big brother Bryceton.

 

 

    At home they  like to play video games, watch TV, and roughhouse.  Often while they play video games they are joined  by Grandpa and the dog  for an  afternoon nap. And yes that is

 

Darth Vader.

As you see it can get a bit crowded on that bed so sometimes Nethan ends up catching a few Zzzzzs on the floor with that great blankie

Also as you can see here,

Nethan has his more ...pensive times and here

you can see what my father probably looked like about 60 years ago...

    Of course by the time I had finished uploading this extravaganza of snapshots taken by my mom, I had to laugh because you would never know from these pictures that we are within mere moments of some of the most beautiful scenery in the world.

    Seems the only thing to do ...until beach pics are uploaded is to share this one of Nethan ready to head to the beach...

 

Project Aloha-Day 36...The There Have Been Things to Do Edition

    Mahalo to Beth for doing such an outstanding job of minding the place while I have been away and quite busy. I knew I could count on her to keep you amused, entertained, and of course thinking...while I was away with Nethan.

    Nethan had the tests mentioned in this post. As I am back to trying to get accustomed to this POS keyboard I am directing you there instead of trying to type the darn things again. In a strange good way and strange bad way, the tests did seem to show nothing obviously wrong with Nethan. After the tests, Nethan had a very hard time coming out of the anesthesia. He is back to being his lovable and charming and otherwise highly opinionated self now but it was not very easy the rest of Thursday or the past two nights.

    Dr. Derdoy actually asked when he was telling us about what he saw and what might be going on with Nethan if the neurologist had ever considered a muscle biopsy or had Nethan ever had a muscle biopsy with regards to his hypotonia and ruling out any myotonia. I just about reached over and slapped him upside the head as I have been asking about a muscle biopsy for a year. Of course I just in my quite direct manner reminded him the original biopsy for Hirschsprung's Disease was DELAYED last June because we were thinking it would be best to do both biopsies at once but neither of the neurologists believed it was necessary. After again repeating how Nethan is doing so well on the Miralax gaining weight and growing, as far as how to proceed, Dr. Derdoy was not Crystal Clear at all. He again mentioned referring us back to Dr. Shin the surgeon regarding some surgery where they use Nethan's appendix and we would irrigate his bowel once a day. This is a hard one for me as I can't imagine Nethan having something like that forever...BUT I also can't imagine him going on like this with the Miralax forever either. I can't potty train him like this...can you imagine sending him to Kindergarten or school in diapers in another three years?

    As for Project Aloha...       

Just Cause I Don't Blog it Doesn't Mean it Doesn't Happen

    In a comment or e-mail from Fuming Mucker, he reminded me to keep smiling. He suggested I post my reply e-mail to him so here it is:

Oh I am trying... actually quite easy when I am with the boys...they are a total crack up and a lot of fun....I  know I don't blog enough stories about them but figure I could never ever capture the love and admiration  I have for them. Bryceton really is a special and amazing person. I am lucky to be his mom. Nethan is lucky to have him as a brother!!! Nethan is special too but his temperament is not as easy going as Bryceton and he is starting with some mood swings and tantrums as he hits 2 in 2 months.... thanks for the support it does mean a lot to me...even with our differences ;-)....you know actually even more so because we do see things differently... I do value it and take pride ...thanks Crystal

 Makes sense, right? This keyboard I swiped from Bryceton's computer is very different from my previous one and so it is taking me a while to get used to typing with it. As I shared in my emails to you (hope I didn't miss anyone) I wouldn't do anything rash and appreciated all suggestions and support. I do believe I would be missed by more than one reader. However, as I am certain you can appreciate when time is at such a premium as a single working mom with a chaotic home in the process of moving, that isn't enough to keep me blogging. Didn't realize it was so late this morning. Must head to work. It will be a busy hard day...Thank goodness I know I can count on smiling  when I see the boys later...and of course those wonderful comments...I think I am even up to handling trolls today too...

More Tests Scheduled for Nethan

    Boy what a busy last day and a half. I tried to post last night but Typepad was performing maintenance and my post was lost. As I spent Friday driving to Phoenix and Saturday driving back home, I am not up-to-date on the Mae Magouirk story and send you on over to RomeoCat.

    Friday morning we saw Dr. Derdoy. Although Crystal Clear we are all glad Nethan is  growing and gaining weight, I have many concerns he is on an adult dosage of an adult prescription laxative every single day, and still has explosions. I can't imagine being in this same place in another year or two or four. With insistence Dr. Derdoy agreed more testing would be appropriate before we explore a more drastic solution. Thus, an  Esophagogastroduodenoscopy and Sigmoidoscopy are scheduled for Thursday April 28. Although I am glad we are doing more tests, I have to guess and am betting Dr. Derdoy would agree, these tests aren't likely to show anything. They are just tests that should be done or rather should have been done a very long time ago.

    It is exhausting and terribly frustrating to know something is wrong with Nethan &/or something is not right with Nethan. We have neither a diagnosis nor more importantly, a prognosis everything is going to be all right.

WORLDWIDE EXCLUSIVE!!!!!!!

Oooh What Fun...It Could Kill Him but Come Back in Two Months

    I absolutely promised several important readers a Nethan update back on Saturday or Sunday but became entangled with multiple Kleenex, e-mail, La Shawn's Barber Corner,  Michelle Malkin , and of course Easongate.Now things have gleefully become a night of two semi-healthy young boys with a sniffling mom who has had TWO margaritas and no Bitchma in tow!
    What joy to blog without the nagging and only a quarter of the guilt. Honestly I believe the Easongate thing is not half as large as the blogosphere is trying to make it. I am voraciously enjoying the blood blogfest and am terribly glad Eason is almost being held accountable for his what I believe to be libelous statements. Although  I believe he misspoke in emotional haste, his misspeaking is a lot more consequential  than when I emotionally misspeak with Bitchma.
    Bitchma, Nethan and I  saw Dr. Derdoy on Thursday. The appointment went quite differently than I expected. Dr. Derdoy was quite relaxed and  pleasant. We learned later he came into the hospital specifically for our appointment. I guess my raising hell on Tuesday must have made an impression. He explained that although the first Xray man who looked at the upper GI series (PRIOR to surgery)  didn't find anything , he went back after reading the surgery report and thought he saw something. He went to a 2nd xray man who agreed with him that it looked like there might be a concern about a malrotation. He looked at Dr. Shin's surgery report(the Lap surgeon) and spoke with her  but she said it appeared things were firmly attached as they should be. He showed me the X-rays and told us he really believed before we went forward with anything such as a mic tube or colostomy or anything dramatic that we should rule out malrotation. I was  a bit more impressed with him than I was the first or second time. He wants to sit down with Dr. Shin and the Xray guy(s) and look at it together before we proceed. Also threw in there I really shouldn't be changing doctors... I reassured him I understood the need to stay with him and I was relieved he was finally taking this seriously and knew there was something seriously wrong with Nethan. He also told us there was a child a ways back at CHELLA that died from malrotation and wanted to make certain I knew to call 911 if Nethan started to vomit. Of course by the end of the visit he told us to just come back in 2 months. I just nodded compliantly because I knew damn well I would be calling and harassing him within a week if I had not heard from him. So there you have it...Nethan on two other whole notes:  One :we see Dr. Baum the Neurologist tomorrow and  I requested Dr. Baum's office ask for results and told Dr. Derdoy to make certain Dr. Baum had the information and requested they speak prior to the appointment. TWO: Nethan is making huge HUGE HUGE HUGE gains with regards to his development !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Since Friday he is pulling himself up on furniture and anything he considers reasonably stable!  Then just tonight he showed Bryceton and myself how he is able (after working with him through the coughing and sneezing this weekend) to stand himself up AND get himself DOWN!!!! He is as we refer to him Explorer Extraordinaire!!!!You also could obviously him a PITA but that is welcomed at this point. He is getting into everything!!!! Bryceton's drawers... top of end tables.... book shelves throwing things DoWn DoWn DoWn on the ground!!!! I don't even think it is possible to convey the joy of seeing your child...a child  you worried might never walk... when he is  walking and cruising around a room......and creating an absolute havoc ...Ohhhh but then again I have to pick it up....He is so absolutely normal right now besides the poop problems and the part when he feels like a bag of flour in your arms...and of course well he is a teensy weensy bit off the development schedule ....oh and that part where he could DIE within HOURS if things twisted too badly...

"Bitchma" to the Assistance

    Nethan woke up several time through the night in addition to this morning. His fever had still not broken as of this morning. After a mutual bitch fest I told her YES to stay so I could continue on to try and earn a bit of a living to help counteract a bit of the day to day deluge of bills. After 2 calls to Dr. Smyle's office they had to squeeze us in because he was wheezing. Bottom line as Iam having to type thi s all three to four to five times... Bitchma is still here and has swung into a sort of lull with regards to her non stop tear Crystal down... I put in a call to my father today to issue orders to have her sent home on Friday or Saturday. 
I don't think I was clear enough in my last post about my mother.... As a  highly trained and overly educated and overly therapized individual ,... I have more than enough coping skills to deal with this wench. Part of my coping strategy is to bitch and moan and complain about it HERE on my blog.... I appreciate the support...but believe me... if someone kicks you in the shin enough times...it still hurts no matter what you do....so I just am figurinng out what we both can live with and using my blog as a shitting ground....

"Bitchma" Steals My Blog Mojo

    My mom has been here since last Thursday when we went to see Dr. Shin about Nethan's biopsy results. My mom hurts me so damn badly, I can hardly stand it and when we get to this point in her visit I really do wonder if the good things she does and if her presence are really worth it. I need her for all the stuff going on and about to be going on but she "costs" me so damn much in mental health and energy. She has this shrill tone to her voice and I find her quite high maintenance. She would of course disagree and thinks I am ________fill it in with her faves...lazy, bitch,....you get the idea. Before this turns into a full on rant about the woman who gave me life and works so very hard to tear me down left and right...   
    Dr. Shin told us last Thursday that the biopsy did not show Hirschsprung's Disease or anything abnormal. PLEASE do NOT tell me this is good news. This is NOT good news. If it were HD or NID then the next procedure and the outcome would pretty much be straightforward. It isn't and she pretty much said Dr. Derdoy is probably going to just lump it into Chronic Intestinal Pseudo-obstruction. Sort of a catch-all for all the things they don't know about and can't diagnose yet....sort of like Nethan's other  diagnosis of Congenital Hypotonia....Dr. Shin mentioned some of the options Dr. Derdoy may suggest...NONE of them are fantastic...Well my understanding was Dr. Derdoy was out of town until mid-February. I called the CHELLA GI clinic last Friday to set up the follow-up appointment and had to as usual leave a message. Monday I called again and left yet another message. Also yesterday I remembered we had an appointment with Dr. Schoenberg an Orthopedist but thought it was 1:30 but it actually was 8:00am... thank goodness I called yesterday morning at 8:15 to check and they said to go ahead and come on in...unfortunately it took far longer than I thought it would and I ended up being late for work and didn't call and had the ringer off on my phone and my work was quite upset with me when I got in there an hour later...The Ortho said we were following the right path and that there are indeed children who go several years without a diagnosis until finally someone has a "Eureka" moment. He mentioned things like a myopathy, mitochondrial disorder(s) or that there are new forms of SMA everyday...He felt and I agree that at this point braces or orthotics in Nethan's shoes would just slow him down...So back to yet ANOTHER call to CHELLA GI clinic today and I hit redial and various buttons for 20 minutes to try and get an actual person. Finally left a message for the office manager and read her the riot act about the shitty service and having received NO calls back and Nethan having had surgery weeks ago...Next call I finally get a nurse who explains Dr. Derdoy is back from vaca and schedules the follow-up appointment for February 25...After shaking my head in disgust , I realize that the good news is that we do have an appointment with the neurologist Dr. Baum on Tuesday the 8th. I call Dr. Baum's office to leave a message for his assistant, explaining I would like for them to request all the pathology reports and for Dr. Baum to speak with Dr. Derdoy...Would have liked to have thought the assholes would have spoken at some point before this let alone with his general Ped. Dr. Smyle...Call back the GI clinic and tell them that the 25th is ridiculous but if that is all there is that I need a call from Dr. Derdoy to see if there are some other tests he wants performed before the appointment on the 25th. Can't you just see us waiting to see him  and THEN having him suggest some further testing????? So having covered my bases, I came home for lunch with my mom and Nethan. Nethan has a nasty nasty cough and congestion with a high fever so he stayed home from daycare the past two days. My mom rags on me about having generic Tylenol and how I should have taken him in to the doctor...I had called Dr. Smyle's office and they said as long as he is not tugging his ear and is peeing there is no need to come in at this point...My mom is just not used to kids getting sick...most moms of kids in daycare will tell you there is almost a non-stop string of colds through the winter if not year...Head back to work and learn 3 of the teens I have worked with anywhere from over one year to under three months AWOLd last night and are headed back North to their home cities....2 of the three will most definitely now end up back in Juvenile Hall if not CYA when they are caught or turn themselves in...all most likely for a simple booty call down on the "Avenue"...Right before I begin seeing the other teens I get a call from Dr. Derdoy who is very apologetic and says he can see us on this Thursday...then another call several moments later from the office manager who is also apologetic and runs through everything that has been done on our behalf...Finish up with work, pick up Bryceton and come home to my mother who bitches and screams and taunts me for hours about how awful I am and how I spend $$ on Starbucks for myself but  give Nethan generic Tylenol...about how Bryceton never eats a thing...about my time on the computer (spent earlier today at lunch to pay bills...) how Nethan doesn't have enough clothes,  that Bryceton has too many toys, they probably don't take vitamins, Nethan has not enough toys, that  I am so awful I will probably take Nethan to daycare tomorrow even if he has a fever (of course can't do and wouldn't do), how I have too many books, how Dr. Smyle is a rotten Pediatrician and he has missed all this stuff with Nethan ( I concur) ,my desk is a catastrophe (yes it is ....) I mean On and On and ON...Thank goodness for American Idol...it works its magic and she finally by mid way warms up a bit towards me and is able to be civil....She leaves tomorrow....Not a moment too soon...I wouldn't be saying that if she could even begin to appreciate the stress I am under and how it is NOT that easy being a single mom and having to not only mother the boys but to also work and find time to pay the bills and fix meals and laundry and ....all the other stuff she seems to forget my father did, still does for her...Unbelievable,  unless you know my mother...What is really Crystal Clear to her is that I am a total and complete awful lazy person and rotten mother, until you tell her that is what you hear her saying  and has said explicitly...then she just goes back to nagging...or if you are somewhat lucky she moves onto pouting because then at least she is silent...I am seriously considering whether I really do want her here or around more than 3 days if Nethan has another surgery...just does NOT seem worth it when I realize how awful I feel with her here by this point in her trip...

Progress and Not Regress

On account of the surgery, I was concerned Nethan might regress in some of his more recent accomplishments. Instead, we were all nicely surprised over the past day or so with the number of accomplishments he has been able to rack up!

• Able to pull self up on edge of couch with minimal assistance
• Able to crawl for quite a distance instead of doing his hop-a-long butt scoot!
• Keeps saying "LOOK" and loves the acknowledgement and excitement he gets by his proclamation
• Says Dog and calls for Mama!!
• Lines up his little cars in a parking lot fashion and in a train like configuration...Can we say early Obsessive-Compulsive :-)

    Although I took my mom to the Outlet Mall today to engage in some commerce warfare, there was plenty to do this evening and thus I am not quite up to a complete mind engaging post. Instead, I present for you this brogging post and link you over to Crystal Clear Photography where I have posted some pics of the hospital adventure. Please be kind with comments about me as I had very little sleep the evening before and was absolutley 100% sans any makeup in the pictures. I know I am pathetic to even express such a disclaimer but I couldn't post the pics without expressing some embarassment and felt the pictures would add something for those following the story. I always figure when I take pictures on a day like yesterday there will be a day when I will think that looked pretty darn good...

You Don't Mess Around with Nethan's Mom

    Once again the house is quiet and all those who would keep me from my blog (read my beloved mother) are asleep. My most sincere thanks to Jimmie of Sundries Shack and Mr.Bob for filling in for me during my brief absence. Both of them really stepped up to the plate for me and I had a great deal of fun sharing my little ...but growing corner of the blogosphere.
    You might remember that old Jim Croce song, You Don't Mess around with Jim". After reading our experience yesterday with CHELLA,  you probably won't be able to hum it without inserting Nethan's Mom in place of Jim. For those of you not interested in learning more about Crystal Clear wearing her big girl underpants I will summarize the most important parts:

• Nethan is doing well. The biggest problem right now seems to be his very sore throat as they had to intubate him.
• As the anesthesia relaxed Nethan a great deal, Dr. Shin was able to apply a great deal of pressure to his abdomen and in her own words, "We were all shocked at how much came out of him, there was enough to fill at least 10 diapers". Thus she was able to perform the more simple procedure,a Lap, and not make the larger incision to biopsy his bowel.
• Results from the biopsy will not be back for one to two weeks. I am to schedule a followup appointment for two weeks.

    For the rest of you who want to read a ridiculous story about what it might take to get your child adequate care and the bitch you might have to turn into so he/she will receive it...well grab a cup of something...
    First off let me say, the Travelodge motel we stayed at was a perfect place to stay for what we needed. The hotel was literally directly across from the ER of CHELLA. It included a small fridge and microwave. The owners clearly took a great deal of pride in their property and it showed. Very clean and well kept. May sound silly, but it really helped a great deal to lessen the stress of this event. We will most definitely be staying there again for the next surgery.
    On Friday morning, we arrived and I helped get Nethan into his little hospital gown. They moved us to pre-op where we met the anesthesiologist and they gave him some Verced. Poo Poo was with us the whole time. Right after they would do something, such as take his blood pressure, he would hug and hold onto Poo Poo. The Verced was some good stuff and it acted quite quickly. When he looked at me you could almost see he was seeing 2-3 of me! He was giggly and goofy. When they wheeled him off he was smiling. We were told the surgery would be an hour but we would need to be back in about half an hour. We decided to just wait out the time as neither my mom nor myself was hungry. I distracted myself with an old fashioned Rubik's cube, My mom a word search magazine. An hour later we were moved to a consult room where Dr. Shin came in and explained to us how everything went. After a brief discussion, where I told her about the Lap in 1996 that almost killed me and  told her we were staying across the street so we could be released that day she nevertheless suggested she go ahead and admit Nethan for the night for pain management. Shortly thereafter they came to get us as Nethan was coming out of the anesthesia. At 12:15 in recovery, poor little Nethan was screaming in the arms of a nurse and completely freaking out. He had different wires hanging all over him and both arms had stuff making them heavy. Even in my arms he was irritated but more than that he seemed very disoriented. He would not make or maintain eye contact with me. We agreed to have some Morphine administered. Pretty quickly he fell into sweet slumber in my arms. Almost as quickly, I leaned my head back against the wall and drifted off into a well earned nap. Nethan was not going to be able to drink anything until 5pm.Through the next few hours the monitors on Nethan would become loose and at times make annoying noises. Eventually all monitors were turned off although he was still encumbered with all the damn wires. He was very sweet and wonderful as usual. One time the nurse came by to tell us they were waiting for a room to become available. Later she told us the room was available and they knew the floor and the number. Again  she later stopped by to say the room was ready but they were waiting for the people to leave...Slowly it seemed like the other beds emptied out with the kids either being released or taken to a room. At 4:30 with only 30 minutes to go until we could give him something to drink, I turned to my mom and said you know this is really silly, he is fine and they aren't doing anything for him up in that room. Let's just ask them to call Dr. Shin to sign us out so we take him back to the motel room. The nurse said Dr. Shin was in surgery and she left a message for her to come up when she was finished. At 4:44 I textmessaged my dad, since we weren't supposed to use cell phones in this area of the hospital, Nethan was fine and we were waiting to be released. At 5 we give Nethan some apple juice WE had brought with us. He slurped it down and although he still had all that damn stuff hanging from him, he was very cheerful. Just a wee bit later one of the nurses said she'd seen Dr. Shin in the hallway and she'd be right in. A bit later we asked about her and we were told Dr. Shin was in surgery and closing up and would be up after that. Finally at 6 p.m the nurse comes in and says that Dr. Shin had left the hospital. I rhetorically ask her well what shall we do because we will be leaving and I want that IV taken out now...She starts to get a bit flustered and says she'll be right back...At 6:15 she tells us our options are 1) our room just NOW happens to be available and we can go up to it or 2) Dr. Shin's team is making rounds and they will be by around in an hour and a half if we want to be signed out by them....I tell her NO. We go through the whole I will have to sign a paper and it is AMA and blah blah blah and I tell her  I understand it will be AMA but I am signing him out NOW...As she walks away I turn to my mom and say "Oh, I'll sign it and I will add a line about signing him out due to neglect of care"...At this point the Anesthesiologist comes in and tries to give me some bullshit lines about how Dr. Shin had taken deeper slices than she'd planned or something like that and worried about internal bleeding and it really it would be best for Nethan to spend the night. I tell him he is wrong (I'd read through Nethan's complete chart and seen what she'd put for reason to admit him) and explain Dr. Shin knew exactly what she was going to do and the operation wasn't anything different than she expected and  re-iterate everything I'd said earlier and told him we are taking him out of this hospital NOW and I want the IV taken out. Now at this point the assisting surgeon shows up and tries the same bullshit line and I tell him after he spews some bullshit that that is an outright lie. I say the same stuff again and say "I will sign the paper , I know it is AMA but I am telling you  we are staying across the street from the ER  and I have not a single doubt he won't get better care if I run across the street into the ER than if we are staying upstairs in  this hospital. At this point guess who walks in but ...Dr. Shin. Dr. Shin is still in her scrubs...Dr. Shin had NOT left the hospital at all...Dr. Shin, after a brief recap with me, where I tell her: Nethan is doing well, Nethan has drank Apple Juice we brought with us because no one brought  ANY, Nethan had pooped a little and I had changed his diaper, and ALL monitoring equipment including the IV drip had been turned off for hours and they had never found a room for Nethan...and the rest...Well Dr. Shin  rolls her eyes at realizing and remembering how long we have been waiting to be admitted (the stupid nurse actually told my mom it isn't uncommon for a child to wait 5 hours to be admitted) she says "No problem, I live close to the hospital. I will give you my personal beeper number. If there are any problems page me and I will meet you at the hospital. " Yes all those stupid liars standing there...One thing to lie and/or  exaggerate but also please how dare they try to pressure me into their way for their benefit and question that  I, NETHAN'S mother, don't have his very best in mind AT ALL TIMES...Talk about Asshats...I had not a single doubt for a single nanosecond he wouldn't be better off in the hotel room where I could jaywalk and run into the ER than upstairs where I would have had to deal with god knows what and go through their stupid ass procedures...I know I know I know...not every mother would take that supposed "risk"...well I am telling you it was Crystal Clear...I know it was NOT  a risk. If it was a risk I wouldn't have taken it...Let alone you know my mom would never have let me do it if she had any concern or worry. Nope you don't mess around with Nethan's Mom..dee dede deedeeee

Short Update

(Posted by MrBob)

Just a quick note for everyone.   Today is the day for surgery on Nethan, Crystal's son.   The last I spoke with Crystal, she wasn't 100% sure if it was scheduled as a morning surgery or afternoon - but figured it was going to occur this morning.

I'm sure everyone wishes Crystal and her son the best and if I can reach her later this afternoon or evening, I will be sure to post it here and keep everyone updated on the situation.   As you know, hospitals usually don't allow cell phone usage and I'm sure Crystal will want to be with her son as much as possible, particularly after surgery.

Regardless, I'll do my best to find out how the surgery went.   In the meantime, comments of support are most welcome and I'll be sure to pass them on.

Last Minute Post

I tried to post last night but lost the thing as Typepad was updating. Just a last minute post as my mom is still sleeping