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Sunday, December 25, 2011

Merry Christmas....

May you all be blessed this day with the amazing wonder of the first Christmas which brought the greatest energy of the most high God into human form, to walk among us, be vulnerable, and live with us as we are.  May you know this day that YOU are so important and wondrous that Christ came in human form to live with us, teach us, eat with us, laugh with us, cry with us, and just be with YOU in general.

May the joy of sharing gifts, sharing food, sharing time and laughter and tears be s gift that lifts your hearts, minds, and spirits high.

My pepperoni loving son was excited to see that Santa had put a huge pepperoni stick in his stocking "OH MY GOSH!!!  Santa gave me pepperoni!!"  That was Josiah.  Gonzo was so happy to open the only thing he asked for--a Bop It game, and has been having fun playing with it. We spent the night at A's house and Santa visited us there.  My Mom and step dad as well as my Dad and my brother all came over for Christmas Breakfast and to see the present opening.  Everyone is always amazing at how calm my kids are and how you have to keep encouraging them to open gifts,a s they have no problem stopping for long periods of time to play with what they have opened.  Later (if I can get the kids away from their other gifts) we are supposed to meet my sister Sharon and her kids at dynamite hill with their new sleds to go sledding.  Then we go over to her house for Christmas dinner.  We are bringing a turkey, which is roasting in the oven.  A will probably bring it directly to the house if I take the kids sledding because A is not fond of sledding.  So it works alright.

I hope everyone is having a wonderful and amazing Christmas day!!

Wednesday, December 21, 2011

Gingerbread men and Chirtmas fun.....

So, I know I have been on here quite a bit lately talking about the ups and the downs of raising children with special needs, or rather more accurately, dealing with a world still struggling to accept all people as they are, no matter what their abilities, behavioral/social challenges, or medical status.  So I have not posted much about our Christmas preparations  (Sorry for the lack of pictures, I have not emptied my camera as I can't find the cord to do so, but some pics will be coming soon)....

A couple of weeks ago we put up some outdoor lights and started our nightly advent calendar, which has a great piece of chocolate behind each door.  and one of the things that I greatly appreciate about my children is that they do not try to sneak another candy out of one of the other little windows, the thought never crossed their mind.  They love that nightly ritual of finding the right number, opening the little door, reading the words behind the door, and pulling out that morsel of chocolate to unwrap and enjoy. YUM!

Last weekend I tried a few different cookie recipes--mainly trying to find both a sugar cookie and a gingerbread cookie recipe that we like the flavor and that are easy to work with.  I found a wonderful tasting sugar cookie recipe, and if I do the ball and flatten method they are great--very easy and quick, but cutting them with cookie cutters was a bit more difficult, so a LOT of in and out of the fridge to firm up the dough.  BUT they did make great shapes, held their shape well, and were the best tasting sugar cookie I have had.  So I will make it again. 

Then I found the best light tasting gingerbread cookie recipe (while I like traditional gingerbread, with dark molasses, the kids are not fond of the flavor).  This recipe for gingerbread men is perfect!  It has a nice light ginger flavor, it forms a great dough ball and is very easy to roll out, cut with cookie cutters, and transfer.  I made a dozen and half cookies this weekend (which we all had a blast decorating), and they were all gone by Monday afternoon.

The icing I used for us to decorate with came out beautiful.  It was another recipe I found on http://www.allrecipes.com/ and was shiny, beautiful icing that was easy to work with and dried shiny...and it worked great on both the sugar cookies and the gingerbread men.  Yesterday the kids and I made another 3 dozen gingerbread men cookies (both gingerbread man and snowman shapes), as today is a cookie workshop for grades Pre-K thru 2nd grade at Josiah's school.  So we signed up to send in a couple dozen cookies to decorate.  And at 10:00 I will take the little girl I babysit up to school to join the festivities of cookie decorating.

This weekend we also put up our tree!! Gonzo had a great time decorating.  Josiah however was not keen on it, he hung a couple of ornaments, but was not very interested in it really.  We also put up the tree at A's house.  Again Gonzo was excited to help, and Josiah was not really interested, but did put on a couple of ornaments. 

I have wrapped most of our Christmas gifts, which is a new record for me, usually i have at least half of the gifts still to wrap on Christmas eve, which means short night.  As we will be visiting A's family the 23rd and 24th, and making the 5 hour drive on on Christmas Eve, I did not want a lot of wrapping on top of tat, we need rest before the busy and long day that Christmas often is.  We will be at A's house for the overnight so the kids will wake up there Christmas morning.  While I love having Christmas morning at home, it is A's turn.  It will be fun.

I hope you all are having a wonderful Holiday season.  Happy Hanukkah to all those who have begun celebrating this wondrous 8-day holiday.  And Merry Christmas to all who are enjoying advent and preparing for the celebration of Christ's birth.  And Happy holidays to all others who are celebrating Kwanzaa, Yule, Solstice (TODAY), and all other holiday traditions surrounding this festive time of year!!

Tuesday, December 20, 2011

A Dentist!?!!? Elves make Toys!!....

Okay, so this has nothing to do with Rudolf or the elf that wants to be a dentist, but it does have to do with a dentist, so I had to have a more seasonal title..

SO....

I believe I have posted before about the saga we have had trying to find someone to work on Josiah's teeth (I looked back through and can't figure out what post it was in).  So, I will just do a quick summary.

One of the challenging things about damage to the brain which happens in CP is that for many people the teeth do not form correctly.  When Josiah's teeth came in there were holes in the enamel in various teeth on both sides, and all of the teeth on the left side were visibly thinner and smaller than the ones on the right side of his mouth.  We consulted our doctor and he was not concerned, and we also consulted a dentist.  There was only one dentist in the area where we were that both accepted medicaid AND took kids under 5 years old. Our thought was that sealing them would help they avoid decay as the holes where decay can get a foothold were already there.  BUT medicaid does not cover tooth sealing, and as we were barely surviving  financially so could not pay the high prices for tooth sealing.  We were fastidious about brushing his teeth and making sure that those holes in his teeth were kept clean. 

But even the best of brushing can not keep things clean entirely, and in the summer of 2010 I noticed a small spot of brown in one of the holes.  As we had moved up here, we found the only pediatric dentist who took medicaid and young children here.  .  I called them first and explained his medical history, as some dentists (and heck, some doctors) can be hesitant to work with a child with his medical history.  They said they see kinds with all sorts of special needs.  So we made an appointment.  Gonzo got his cleaning and check up done first.  And then Josiah's turn came, and they decided at the last minute that to even clean his teeth they needed clearance from a cardiologist and a pulmonary doctor.  As he had been cleared by cardiology as a baby before I even adopted him, I did not have a cardiologist, nor did I have or know where to get, the paperwork showing that he had been released from cardiology.  So began a six month saga of getting a referral to and an appointment with a pediatric cardiologist (with chest x-rays and an EKG done beforehand. Due to a snowstorm in late November 2010, they canceled his appointment and rescheduled him for January.  So finally in January we saw the cardiologist and he was pronounced to have a healthy heart that needed no followup or any special treatment for dental work. 

So we submitted this to the dentist the very same day.  Then we were told his pulmonary clearance was too old for them to be able to do a cleaning.  So I called this pulmonary doctor to get a new clearance letter, and was told it had been too long since his last appointment and we would have to come in again.  So they scheduled us for 3 weeks later.  On the 2 1/2 hour drive to see the pulmonary doctor, my car broke down on the side of the highway.  We missed the appointment, but thanks to a very helpful police man were able to get the car running well enough to limp it off the highway and get it to a shop where it was fixed.  OF course I had to rely on family to help as I did not have the funds necessary, so my Mom and step father put some money on my green dot card (handy little thing that is).  Josiah and I had a long lunch at subway that day while waiting for the car to be ready to drive back home (the car died completely about 2 1/2 weeks later).  So we scheduled another appointment, the earliest they had was in March.  About a week before the appointment the office called to say that his pulmonary doctor who had been following him since he first PICU emergency was leaving the practice and would I like to reschedule with one of the other doctors, which would be an appointment for late April.  So I declined and decided to find a closer one.  Josiah's pediatrician referred us to a great pulmonary group at a closer children's hospital (only 1 hr and 45 minutes way).  The appointment was for mid-April.  So come mid-April, we got in to see the new pulmonary doc, and he was great.  We got the specific clearances that the dentist needed to both do regular cleanings and sedated dental work.  We took those to the dentist office, and they had to check with the doctor before scheduling a cleaning/checkup.

but this time that little spot of brown had grown and three other teeth with holes had started to show brown spots, and in the areas of thin enamel there was some discoloration starting.  So finally in early June he had a cleaning and x-rays, and a check up, nearly a year after this saga began.  14 of his teeth are affected, with that first one I mentioned being the worst one (that one cracked and broke in early July, but as it did not seem to be causing him discomfort the doctor said it would be fine until surgery.  So we were put on the waiting list for dental surgery.  I got a call from the person that handles it and she said she needed more medical records from his doctor as the surgery center was not sure they could handle his medical issues.  So that was all sent in.  I told her to tell me now if they are not able to do it, as we had waited long ewnough and if they couldn't do it, I was willign to drive out to the dental school attached to a children's hospital 5 hours away as I knew that they could be comfortable with his medical history and current issues.  They got back to me in a few days and said the surgery center and anesthesiologist had reviewed his history and were comfortable doign the surgery.  So we were all set and just had to wait for a space to open up.

 In August I get a call that he is scheduled for September 14th.  So we start preparing for that, hada heck of a tiem scheduling his pre-op, but got it all set up.  And then two days before the surgery he developed a fever and stuffy/runny nose and a cough.  So he could not go under anesthtesia.  So he was again put on the waiting list.  I got a call in mid-November that he could come in either december 8th or 22nd for the surgery as they had openings on both days.  So, as his concert was the 8th and he was so excited about the concert, we chose the 22nd as his surgery day.  We had his pre-op done, got everythign all arranged, and even notified the school.  He had his intake phone call with the nurse on Friday, and everythign was all set for this coming Thursday.  A and I both took the day off, and were ready to roll.  Josiah had been complainign of tooth pain since Saturday, so we have been rinsing with salt water a few times a day, and I was looking forward to him finally getting these teeth fixed.

Then on Monday morning I get a phone call that the anestesiologist changed their mind at the last minute and now is not comfortable working with josiah's medical issues.  So they can not do the surgery.  18 months of jumping through hoops, getting clearances, being told that they can do it, and THIS last minute decision NOT to do it.  At least they are calling in a prescription for amoxicillin to deal with the infection that appears to be developing in Josiah's tooth.  But that does not solve the problem.  Now we have to start over.  Now Josiah has to wait even longer with his teeth getting continually worse.  Even with good brushing and trying to make sure he rinses with water after eating sweets or crackers that stick to his teeth, his teeth are still slowly deteriorating.  For a kids with a great smile and such a normally happy disposition (except at school for soem reason...) it is horrible to make him wiat any longer.  So, I am a bit frustrated....well much, MUCH more than a bit.....

I just have to breathe and roll with it, and doctors, dentists and teachers are definitely not all cut from the soem cloth.  Some are in those positions becasue they want to help all people, and others only want ot work with the easy ones, and shove the rest of the children aside.  Good old Nazi ideals at work, elimiate all that do not fit the mold.  Lately, I feel like we are dealing with more than our fair share of inflexible and intolerant professionals when it comes to Josiah.....

Well, maybe with the anitbiotics and not the surgery, Josiah will have a better Christmas.  He always has a hard time for a few days after anestesia....So Merry Christmas....

Monday, December 19, 2011

Josiah's First STEPS!!!!

This weekend my beloved little Josiah took his first independent steps at age 5 years, 4 months, and 8 days!!  He was stading next to the couch (when I say standing with Josiah I always mean leaning on, as he does not stand independently yet), singing a song he made up a out humpty dumpty (his self-made songs always include a few "sentance enhancers" like booger, fart, or his newest favorite butt-crack :o ).  As he was singing he was dancing, and without realizing it he dance 2-3 steps AWAY from the couch before losing his balance.  But he realized he had doneit, he had taken independent steps for the first time!!!

So for about 30 minutes after that he kept practicing.  I actually brough thte practice to a close--for two reason, one was hat it was past bedtime, and the other was that his legs were tiring a lot and he said his knees where hurting from all the landings.  He was not happy that I said it was time to wrap it up and we could practice the next day, but I did not want him to injure himself and be afraid to try again.  He did practice more both weekend days.  He got up to four steps quite a number of times before losing his balance.

This is more exciting then when gonzo learned how to hop when he was five. 

One of the most amazing things about having children with special needs is that when they reach milestones, it has been such a long journey and they have worked so hard to reach that milestone that it is always a cause for celebration.

Thursday, December 15, 2011

Quick weight update

Okay, so I know this blog started off to track my weight loss journey with the unreasonable goal of losing 80 pounds in 80 day way back in March.  While I have realized through this process that weight is not JUST about food and exercise, but rather includes the baggage we carry from our past, the stresses of the present, and how we habitually handle our frustrations and other emotions, I also realize the to get healthy in all areas, I need to put some effort and thought into my food choice.  I recently put a ticker up on the top of the blog.  It starts at my original weight when I started this blog.  I updated it with a weigh in this morning.

So what I have I been doing to assist with  the weight loss over the past few week?

well, first I have been making sure that I eat at least 7 servings of fruits and vegetables a day.

Secondly, I have been eating soup (60 calories) or broth (10 calories) as a snack instead of something more calorie dense, and the warmth of soup really makes you feel full and satisfied.

Thirdly I have been trying to drink at least 3 liters of water a day (one through the morning, one through the after noon and one through the evening.

In the last 2 weeks I have lost 4 pounds.  Which given the holiday foods and the munching that I have been doing is pretty good....I will try to get better about doing a weekly weight tracker.

Wednesday, December 14, 2011

When a day goes well....

...it is a good reprieve from the stress and frustration of other days. 
Today was a calm day all around, which has been a much needed thing.  I only babysat this morning, so the day was pretty clear.  I focused on refiguring and repricing the materials that I need to do the renovations now that I finally have the building permit.  My mother stopped by and took me out to lunch, which was a wonderful treat.  It is good to talk with my mom without kids distracting us.  After that I went back to working on finding the best price I can for materials.

I was trying  not to stress out too much about some things that happened at school yesterday that the principal had called about yesterday.  he was going to look into it more today, and so I was wondering what that would amount to.  In the early afternoon I got the call from the school, and was able to talk for a while with the CSE chair about the issue, which thankfully they perceived to be the same as I had, and did not turn out to be as big as what I perceived the principal had made it seem yesterday.  So that brought some stress relief.

Josiah had a good day at school, which is always a good thing.  his frog chart (behavior chart with a frog on it) had 12 out of 12 happy faces.  So he got a star student star.  Gonzo also had a good day at school.  The boys were both calm and happy this afternoon.  A got out of work early today (was here by 5:00), and as planned, took the boys over there for dinner and to hang out until about 7:30.  The boys really enjoy being there, and though Josiah wanted to spend the night there, he only resisted coming home a little bit.  I was willing to let him stay even though it is a school night, but A was not up for it.  And normally I wouldn't have been either, as we have agreed the kids should have a consistent school night routine and sleep at home with me on school nights.  Hopefully they will get to spend one of the weekend nights with A.  While they have only spent a couple of nights with A, they have enjoyed it.  And A has been sober for 3 weeks now, and things are calmer all around.  A has also been more consistent with the kids, which has been good.  They enjoy  having both of their parents.

I had a low key evening while the kids were with A.  I enjoyed soup for dinner, watch a couple of episodes of Star Trek:Enterprise, and checked some things out online. The kids came home, took showers and got ready for bed.  We did the advent calendar, which provided their snack (as it is a chocolate advent calendar with a little piece of chocolate behind each day).  The kids took their evening meds and then brushed their teeth without complaining or arguing.  Then I read them books until they drifted off to sleep.

 I have learned through experience that the best way to ward off depression is to do things that bring you peace, AND appreciate the time and ability to do those things.  So today was a good day for bring stress levels down and finding an internal peace....

Recognizing my shortcoming.....

Actually, I think I should have entitled this "Getting whacked across the head and slapped in the face by my own shortcomings....."

I woke up Monday morning about 20 minutes before i had to get up.  I did NOT relish the idea of crawling out of bed, letting the dog out, getting the kids clothes for school together and waking them up...I did not relish the thought of having to vacuum and wash last nights dishes before the kids I take care of arrive....I did not relish the thought of another day of worrying about how Josiah's day was going....I did not relish the thought of dealing with the building permit process AGAIN (yes, I am still working on just GETTING the permit)....relish, relish relish--maybe I need to add some mustard to my thoughts....

So after a few minutes of dreading the day, a day that had not even started yet, a day fresh and new, a day that Who Knows what is going to happen, I realize I had already judged a day that had not even begun...

I have been doing that too much lately. A dear family member of mine is going through a deep depression.  I can empathize with her and give her advice and a listening ear because I have been there.  I spent many years struggling with clinical depression, which eventually neared the debilitating level.  I finally got serious about fixing some old problems that I never dealt with by going into some intensive therapy.  It was not an overnight fix, it was a few years of developing a rapport with a new therapist, working through various trauma's on a variety of different levels, and learning to trust myself, and to know how to separate the emotions tied into the past from the actual emotions of the present.  Sure I worked full time, had a good social life, and an overall successful and good life while I was doing that.  The internal changes that came about gave me the ability to really appreciate and enjoy those external successes.  It was amazing, for the first time in my life I knew how to embrace life without have a constant cloud subduing and dampening everything. 

That was before I met A, before I adopted my children, before all hell broke lose in our lives 3 years ago....And I weathered the ups and downs, ins and outs of these past three years well.  Even with the many challenges, the losses, the stress....All of it I have been able to role with.  My battle with clinical depression appeared to be over...if I could make it through all of what I made it through the past few years and still have my emotions and attitude in check, well I figured I had truly overcome depression (real depression, not hte normal blues and blahs that everyone gets).

But lately I have found my attitude being in totally the wrong place, sometimes, Like Monday, bad from before I even get out of bed.  Today should have been a great day--I went with Josiah's class on a field trip in the morning.  We had fun, and it was great to be part of that adventure.  It was only a 1/2 day trip, so the kids still had school to finish when we got back.  I knew Josiah was tired, but his wonderful aid was going to have him take a rest on his mat.  I figured he would fall asleep, so I left to run errands before my little charge was to be dropped off at 2:00.  I went to my dad's and fed and watered the chickens.  Then I got my mail, and my parents gifts had come in.  Christmas shopping is almost done.  Then I went home and checked messages, I got a call from the town, and my building permit was done!!  Yippee!!!  So I ran down there and paid the fee and got my permit, NOW i can begin renovating my new space and turning it from a laundromat into a house equipped to do daycare.    I was back easily in time to be there when the little one I babysit came.  So I should have had a good day, right...?

Well, after Jos got home, the phone rang and it was the school principal telling me that Josiah had exhibited a very disturbing behavior and asked if his aid had said anything.  She had not said much, just that he did not nap and had a rough period int he afternoon, but that he had come around and finished the day okay.  But the principal was very concerned, and was going to look into the incident more closely.

And I had an emotional meltdown.  THAT is what is zapping my strength, that is my shortcoming...I don't understand what is going on with Josiah.  He has always been my little charmer, my ALWAYS happy boy.  He has always been strong willed but ever since he was a baby, he has been pleasant and self-motivates, and more than willing to push through obstacles.  But ever since starting school KINDERGARTEN he has been exhibiting SO many behaviors, so much frustration, so many inappropriate responses and actions--I am literally beside myself trying to figure out what is going on with him.  The weird thing is that if this were Gonz, I would be upset or annoyed with it, but not dumbfounded, because Gonz HAS a  lot of social and emotional issues that stem from so many places.  With Gonz, I almost expect poor behavior and work very hard to support, encourage, and wrangle him into a secure position to keep behaviors and anxiety in check.  BUT JOSIAH!?!!?? 

My shortcomings that have been running into me lately--I have not been eating right--yes, I do the whole grains, eats beans, lean meats, and try to get enough veggies--but lately my evening have wrought with hunger that is not based in nutritional need but rather in emotional need, so I have been over eating very often.  I have not had the energy to keep a neat or tidy house, so every morning when I get up, I run around for the first half hour doing dishes from the day before, cleaning up the living room, doing all the things that I could have and should have done the night before.  I have multiple baskets filled with clean unfolded clothes, that need to be folded and put away, but I have a motivational or action block that I just donw' understand.  And the longer these behavior issues with Josiah go on, the more I feel like i must be doing something wrong as a parent.  I have tried so many different "expert" parenting techniques (and some old school ones too).  I don't know how to help him understand that his behavior is making his life uncomfortable.  I don't know how to understand what is wrong that makes him have to act out in such drastic ways.  I don't know how to help him. Everyday I put on a strong, confident face, I talk to the teachers and others who work with him and try to remain personable, professional, and share what I know and what I have read about.  I try to be a good parent and a good team member.  And still I feel like Josiah is slipping through the cracks.  The boy who ALWAYS had a smile spends a lot of time crying and being angry now.  My son who was just a ball of joy and amazement is just clouded and fearful that what he is doing is wrong.  I don't know what is happening with him, for him, I just know that I don't know what to do to help him, and no one seems to have any answers.

 And I feel powerless......I just keep praying for something, anything to help this situation.  I-don't-know-what-to-do-for-him or for myself........And slowly but steadily I feel that dark cloud of depression growing, and I am pulling out everything in my arsenal to not go back to that state, but until I can figure out what is going on with Josiah and help him find himself again, I don't see how I can escape the slow dulling of my world.  That is my biggest shortcoming of all......