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Monday, November 21, 2011

Updated**The story from June--"Thinking" part five...

So back in June I had been writing the story of how my boys joined our family and a bunch of the events, emotions, and changes that came with adding first Gonzo and then Josiah to our family.  However, I left off with the initial arrival of Josiah, but have yet to go into the largest life changing period I have ever experienced.  Josiah's first few months with us were the most profoundly life changing, devastating, exhilarating, exhausting, joyous, sorrowful, and all around insane and yet vision clearing of all.  He was a bomb that exploded everything--including our relationship to each other as spouses, our values system, our finances, relationship with the rest of the outside world, our careers, our future plans, our sense of what it means to be a family, my understanding of what love is, my understanding of how much I can handle, my understanding of the sibling relationship between my children, my understanding of life dynamics,  my understanding of what it means to be a parent, and my beliefs in and understanding of God and my relationship to God.  To say that sounds like over kill would be incorrect--this bomb of an experience truly is only under-stated by words.  To read the beginning start with the post  from June "Thinking always a dangerous thing to do..."

So back to the story.. So we brought Josiah home from the hospital in late October 2006.  He had a multitude of issues, but the hospital felt he was stable.  The first thing we did was get his apnea monitor, and make sure we knew how to use it, which was not that hard.  It did go off fairly often, but the doctor reassured us that it was most likely due to movement or poor placement of the sensors, as the doctor though he was just fine and that we were over reacting.  One of the biggest challenges was feeding.  Josiah had terrible reflux and was on medication for it, but it was not the puke all over the place type of reflux, it was the up and down and up and down  kind, where little comes out but it just keeps kicking up (acid and formula together) into his esophagus and air way and the going back down only to come back up. So after taking a bottle he had to be upright for an hour after every feeding. He also had a very poor/weak suck, and tired extremely easily.  So he was on a high calorie infant formula for preemies and it took him about 45-1 hour to finish one once, which would tire him out, so he would need a break and then another feed in an hour.  So if you do the math, we were feeding him for approximately one hour and keeping him upright for 45 minute to an hour and feeding at least every hour and a half to 2 hours.  We got very little sleep....More so than even if with a regular newborn. But we made it work.   Luckily he was not a crier (I don't think he had the strength or energy to be a fussy baby). 

We had Josiah about 10 days, when he had his first major episode.  I had taken him to the eye doctor at the big hospital about 45 minutes from home.  He did not wear his apnea monitor when we were out and about as we had been told it was only necessary when he was sleeping in his bassinet or crib (which had been elevated to a 45 degree angle to the reflux).  I was holding him in the waiting room and he was more limp than usual.  His color did not look right, and to me he did not seem to be breathing correctly.  But I figured I was just being paranoid like our doctor had said, and since the eye doctor did not seem concerned as we went though the tests, I was only a little worried.  In the car driving back though, his color really was not good, and he seemed excessively limp and unresponsive, much more than usual.  So I went straight to the pediatricians office before going home.  He was more responsive there and his color had gotten back to normal, and the doctor told me that I was being too nervous.  he said I had had him dressed to warmly and that is why he was more limp, and if I noticed him acting that way again to cool him down.  I had mentioned to him that the night before his apnea monitor went off many times, and again he said it was set wrong and I should call the DME company to come and change the settings.

So I took Josiah home.  But he still was not acting like himself (yes I know he was a tiny baby who we had only had for about 10 days, but that is more than enough time to learn to read a helpless infant whom you are responsible for and love).  So I tried to rust the doctor--after all he is a doctor and I was not, so he MUST be right, right?!?  The apnea monitor kept going off, and Josiah looked wrong.  He was limp and his color was getting grayer by the minute.  I undressed him as the doctor had advised that I was causing it making him too hot.  But that made it worse, as he suddenly stopped breathing all together and his lips turned blue.  I did a few rescue breaths and called 911 and went back to rescue breaths.  The ambulance got there in a matter of minutes, by which time I had gotten him breathing but he was still in obvious distress.  So he was quickly wrapped in a blanket and he and I jumped int eh ambulance.  At the hospital his temperature was reading 93 degrees (so much for the doctor saying I was keeping him too warm) and he had multiple episodes of apnea (not breathing) and bradycardia (where the heart slows down too much).  The little hospital was not equipped to handle him so they call for an emergency transport to the PICU at the hospital 45 minutes away (where I had been earlier that day). 

While we were waiting for that transport, I got ahold of A and A had picked up Gonzo from preschool.  I filled them in on what was going on, and our friend Sean came to watch Gonz while A and I followed the ambulance to the PICU.  He had a few more episodes of stopping breathing during the ambulance ride, and was admitted right to the PICU.  He was in a heated oxygen tent in the PICU and they were running tests.  The doctor that was there was wonderful and very familiar with the unpredictability of preemies.    His prognosis was unclear, so we called family to let them know what was going on, and I called my dear friend Jacquie (who was also my former pastor) and she came up int he middle of the night (around 2am) and baptised him in the hospital.  By the time she got there A's sister and mother had arrived and my mother and stepfather had arrived.  So he was baptised with extended family, some of whom had not yet met him.  Within a couple of days (hellatious days they were), he had stabilized and was able to move to the step down unit.  We had been sleeping at the hospital (they had a sleeping lounge for PICU family members as well as a shower, toiletries, etc....) and once he stepped down to the less intensive PICU unit, we started taking turns with who stayed and who went home, as we needed to keep Gonzo's life as stress free and normal as possible.  So we switched off daily.  Thank God I was on leave from work.  For over 10 days we were int he hospital before the determined that he was ready to be released. He had an eval by the neurosurgeon who felt his hydrocephalus was stable and not causing the problem, an eval by his neurodevelopmental (as we were going to see her that week anyway so she just came to his hospital room when she was doing rounds), and a few other doctors who felt he had no ongoing issues. He came home with essentially the same meds and such as before with minor changes.  he was to wear his apnea monitor at all times now, AND we switched pediatricians, as the former one was obviously an idiot who had not listened to parents--the people who know a child best and are most vested in his survival. 

A little over a week later we were back in the ambulance, he had stopped breathing again.  This time they ran other tests, and for a week we were there.  We spent our first Thanksgiving as a family in the hospital and at Ronald McDonald house....

I will finish this story later, as I have to get to my father's house and feed my chickens before the kids I babysit come back...

Wednesday, November 16, 2011

life is BUSY.....

So, life is busy....So I have not taken the time to blog, though  it is cathartic.  Lately I have been going non-stop. 

The renovations of what will become our new house/family child care center have been painfully slow, mainly becasue we have not been abel to start them yet.  The permit process, which I had talked with the building code guy prior to signign the lease papers did not tell me what I neede to know (which is a common problem with him from what I hear, a man who likes to toy with his authority in ways that just make life harder for those tryign to do a project.  damn nepotism in a small town makes it difficult to have him removed, I have heard that there have been multiple attempts with signed petitions, but alas, he is who I have to deal with).  So, anyway, I am not well versed in NYS residential code, so I have no choice but to deal with a rude and intentionally difficult man.  And slowly but surely I am getting closer and closer to getting the darn building permit. then the real fun begins....As it stands, I believe that I will not be finishing until late January at this rate, which is okay, it just means paying for two places for a month longer than I had planned.

I did get the main furnace working finally, and then  had the town turn the water on, only to get sprayed with water as the pressure came up to full and revealed a couple of cracked pipes, so the water is off at the main valve coming into the house until those can be done.  I am not familiar with doing plumbing and was trying to have my father talk me through it, but he said it is best just to let him do it when he has a chance to get in there.  As the work can't start in earnest until the building permit is in (repairs can be done without it), my dad feels it is fine to wait on fixing the water.  I'd like to have the water on though so we have the bathroom if we need it while we are working.  So it is just slow going at the moment.

The process far the day care is also going slow, as the application required a floor plan and an outdoor area diagram, and until I know what those are definitely going to be, i can't submit the application.  I will be taking my First Aid and CPR certification course in a couple of weeks, and then the 16 hours of training required for the licensing in Mid-December.  So that is moving forward slowly.

As I have my computer back, I am trying to get back into my freelance writing work.  I was able do a couple of articles today which if approved will be over $40, which will be nice.  If I could make that each day in addition to the babysitting, I might feel more financially stable.  It is just a matter of hit or miss with assignments, so I never know when I will be able to get them.  And the higher paying ones are scrutinized more thoroughly, so there is a great chance of having to redo them or having them be rejected.  But it is something at least, which is good.

School has been improving for Josiah.  We modified the way his teacher tracks his behavior, and it has made a world of difference.  Before she used the green light, yellow light red light system, which may work fine for children who are typical and on track developmentally.  But for Josiah (and in my opinion for any child) is was not appropriate as there was no way to recover from poor behavior.  So if Josiah got upset and had a tantrum at 8:30am, he was on a red light for the rest of the day, a message telling him that he was bad and there was no way to fix it.  Which just kept him upset for the whole day, made him feel ashamed and self conscious (as it is posted on the wall for all the kids to comment on).  He now has a Frog Chart with 12 faces on it, and as he goes throughout the day he gets a happy face for appropriate behavior and meeting expectations and a sad face for inappropriate acting out/rule breaking.  He has made a complete 180, as he is now able to bring himself back around, and know that one bad moment does not mean he has to feel punished and ashamed all day.  He has had almost all great days since the second day after this change took place.  Yes he still has rough moments once in a while, but his aide says that he is working hard at self soothing, breathing, and getting himself back on track.  He is even doing his actual work there.  I think a big part of the difficulty is that they have never worked with any child with real special needs.  So it has taken a lot of adjustment on every one's part to understand how to work with a child with multiple challenges--physical and the developmental delays in social, emotional, and behavioral aspects that come with that. So overall, there has been dramatic improvement in his school experience, and he seems much more content.  Last week we also started him on alternative PE as they are getting into many things that are impossible for him  (like skipping, hopping, jumping rope, tumbling)  so he is having 1-on-1 PE with the PE teacher and he is loving it.  She is able to tailor his PE to his needs and to working on skills like catching and throwing, kicking (which is extremely difficult for him), right now he is maneuvering his wheelchair to kick down bowling pins, which is great for both improved use and control of his legs, AND for him becoming more independent in his wheelchair use.

Well, it is now 11:40pm and as my alarm goes off at 6:15am (and I seem to never get to bed before midnight) I had best end this post so I can get a few things done before I go to bed.  I have been working hard at keeping the house less cluttered, as it makes life more peaceful, so i have something I want to do before I turn in for the night so we can wake up to a neater and tidier house (not really neat and tidy but better than the perpetual chaos it seemed before--it helps that A's stuff is finally out of here and in A's apartment).

Anyway, signing off for now....

Sunday, November 6, 2011

Where to begin...

Well, for starters, my ex-spouse and now friend A has finally moved into an apartment and out of my father's house.  A is renting a nice 2 bedroom in town and my brother and his friend helped move (well moved not just helped) all of A's furniture out of my father's house and out of the old trailer (where it has been stored with a bunch of my stuff too) and got it into the new apartment.   So while unpacking and setting things up needs to happen, A is officially self-supporting.  A also, thankfully, was given more hours at work and so should be able to afford to keep this apartment.  It is beautiful, a big kitchen dining room combo, a medium sized living room, a nice sized bedroom for A, and a little bedroom for the boys for when they spend the night.  I have taken the boys over every evening since Tuesday to help A feel settled in (the couch from the landlord was already there and I took the boys TV out of their bedroom and took it over as A's place comes with everything included--heat, electric, hot water, cable, and wifi.  I am hoping that the boys will enjoy being able to has 1-on-1 time with their other parent.  Hopefully we can nail down a consistent schedule so the boys always know that they can count on having specific time with their Bubba. 

I have also signed a rental deal with the owners of the old laundromat, and will be converting it to a single family residence and running a family daycare from there.  It is a big building with a good, level yard.  I am nervous about it, as it is quite an investment.  If all goes well, after 3 years they will hold the mortgage and I will buy the property.  I will fill in details about this as time goes on.  Suffice to say that between doing all the trainings and paperwork for the child care licensing, and now getting all the permits and doing the renovations for the house/day care, I am going to be one busy lady.  it is good though.  I am ready for a project that challenges in me different way than I am challenged by raising children with special needs.

I'll update some on how Josiah's struggles with Kindergarten are going. I will also be updating on how I am expanding my use of the Nurtured Heart Approach in trying to help both of my boys have more security and self control so that they can function better and enjoy life more.  If you look into it, I have read the book multiple times as I have been trying to prepare myself to use this approach to parenting.  I did not want to do it halfway.  I am at step five, the credit system.  We started using it today, and we had a day wonderfully free of major arguments, fights between the boys, bad language, and tantrums.  Josiah only had one episode of "freaking out" as he calls it, and it was short and resolved quickly. Gonzo only had one round of insane, incessant whining and arguing and it was not at me or his brother, at the video game he had chosen to spend his credits to play. The extreme positive affirmation aspect is something we have been building up to, and using a clear, unemotional consequence for broken rules seems like it is going to work.  I have a bit of tweaking to do to the system, as it is very flexible and can be used by anyone in any situation, I just have to find the right balance that works for us.  But so far, it appears by the calm and happy evening I had with the boys, that once we adjust to this system, life may be a whole lot more peaceful, and our relationships with each other and hopefully with extended family, school, and community will drastically improve in quality.  It is a challenge to essentially toss out traditional (and not so traditional) parenting models and advice, but those have not had much effect on the family dynamic with intense and difficult children who have gone through intense and difficult times over the past few years.  It was time to try a drastically different approach (which has elements of other models and ideas that we have worked with in the past, but applied more intensely), and if the first day was any indication, if I do this right and consistently my children will feel more empowered, more in control of themselves, and have more respect for others, while building them up rather than tearing them down, which most parenting models essentially do (though I had not really realized that before I started exploring this method).  Keep your fingers crossed and say a prayer for us that by fully embracing the Nurtured Heart Approach to parenting difficult children, that like, for all of us will improve.  It is amazing how hard it is to train yourself to give positive affirmation rather than negative feedback when it comes to behavior.  Like most of our culture, I had been programed to try to give attention and specific examples to behavior that was not correct more intensely than giving praise and affirmation and specific recongition to behavior that was correct.

Thursday, November 3, 2011

My Computer is BACK!!!!

So, I finally have my computer back as of today!!  It is a wonderful feeling.  Got my car back on Sunday with most things fixed after 3 weeks with no car,a nd got  my car back today more than 3 months after it stopped working (and over a month after I finally sent it off for repairs).

So hopefully starting tomorrow I will actually sstart blogging on a nearly daily basis again.  So much has been going on lately (seems to be the norm for the past few years), so I have a lot to update on,  but it has been one jam-packed day and I am ready to relax and hit the hay.  So an update will have to wait until tomorrow.  It is good to be back online with a computer that actually works!!

Wednesday, October 26, 2011

A quick hello

Sorry for the long delays and lack of posts lately, I am still waiting for my good computer to return, and it should be here any day now.  Things have been busy.  I have negotiated an interesting deal about the house, which will hopefully lead to both a good place to live and a great place to do child care.  I have started the paperwork to become a registered day care provider, so that ball is rolling.  Hopefully by mid-January that process should be done and I should be approved.  I have also decided with the bigger space that I will pursue another avenue I have been wanting to do for a long tie but the timing was just not right.  I have put in an inquiry on become a foster parent.  So we will see where that leads.  I know that from inquiry to placement is often a year or two, so starting the process now puts us well into having everything else solid by the time any placements would occur.

My car is still in the shop.  The total estimate was over two thousands dollars, so I talked to my step father and he can do a couple of the things that are needed --one of which the garage estimated would be nearly $1000 parts and labor, parts being more than half.  But looking online I can find the parts for less than a 1/4 of what he quoted, so my step father is going to do that one.  So the garage is doing the struts, wheel bearing and new tires.  It should be ready tomorrow afternoon!!

My chickens are doing well, getting feathers and liking being in the big coop.  I am worried that they will get too cold over the next couple of days.  I still have the box with a light in it that they sleep in to keep warm.  But unlike the past few days with temps in the 40's and 50's, the lows are heading into the low twenties (my two button does not work on this computer so I have to write out all numbers that contain a two).  The forecast is an 80% chance of snow tomorrow, and not just flurries but accumulations of up to 6 inches!!!  What a way to have first snowfall of the year!  sheesh!!!

Tuesday, October 11, 2011

A quick update ....

HI All,

As it has been so long since I made a full post, and I am still on an ailing computer, I wanted to try again to make a quick update of a variety of my life areas.

The kids:

School for Gonzalo is going very well this year.  His behavior has been much better than in previous years and he is learning well.  School for Josiah is still up and down, he has his good days and he has his bad days, some REALLY good and some REALLY bad!).  I believe his teacher is trying and I also believe that she truly is a teacher that ca not think outside the box, so this is a struggle for her as much as it is for him.  Luckily his assistant (surprisingly) CAN think outside the box, as does the spec ed teacher, principle, and CSE chair.  So while still a struggle, he is moving in a positive direction.  By November I think we will be on an even keel.

The other big thinks going on for Josiah have just been with his medical/physical special needs.  He did not get his dental surgery last month because he had a nasty cold and could not go under anesthesia.  And since they book months in advance who knows when he will get in again.  His hydrocephalus has been on our minds, as his CT scan last year raised some eyebrows with his neurosurgeon, but as he is not presenting any symptoms, it has just been a process of getting a second opinion from a doctor who is more familiar with pediatric hydrocephalus, and that took a while.  We saw him in June (or was it May or even April!)  and he wanted to do an MRI to see how the fluid was moving through the brain to see if it is coming in faster than it is going out, which would cause it to build up slowly over time.  As it was 60-90 minute MRI he had to be sedated.  Luckily he has not had a cold lately and we had the sedated MRI scan yesterday.  The doctor should get the results later this week and we will hopefully know something within the next couple of weeks.  Hopefully fluid is coming and going at the same rate and he will not need another brain surgery or a shunt.  The ventricolostomy will hopefully continue to work as it had done early on.

Other issues with Josiah lately--his hips are rotating in too much and his neurodevelopmental doc thinks that he should have hip surgery.  We are scheduling an appointment for him to see his orthopedic surgeon to see if he agrees or if her thinks it is not necessary.  There is the visit with the eye doctor which we missed because I wrote it down wrong on the calendar and did not check phone messages for a couple of days (which I do let go way too often, I really need to start checking phone messages daily).  So I missed the reminder call which said the 3rd and my calendar said the 6th.  So we have to reschedule that one.  Overall though even with some potential problems beginning to show, Josiah has been pretty healthy this school year, and seems to be weathering the change of schools well health wise.

The income/housing issues:

I am working on the LONG process of getting registered as a NYS childcare provider to do family home day care (up to six kids).  As I am doing this I continue to babysit the two year old and her brother after school.  I also have another family that has asked me to babysit occasionally for their 3 year old and 9 month old.  I told them that I had to work it so that I only had a maximum of two kids at any one time until I am licensed (state law--as an unregistered provider I can only watch two kids at a time on a regular basis in addition to my own).  So it is a bit of schedule juggling but should be a good start. 

However I have noticed that my neighbors, who are retired and older, are not so happy with all the kids running around, as we share the porch and yard in our duplex.  So I have been looking into other housing for a while now.  It is slim pickings up here.  But I have been talking to a woman whose son is in Josiah's class and who I grew up with (she was a couple years ahead of me in school so we did not know each other well).  She has been trying to sell a large building that used to be her family's laundromat.  It has been on the market for quite a while and has not sold.  She is willing to do a rent to own and allow me to convert it to a residential home with the intent to do daycare.  So that is in the works.  I need to make sure that my investment and hard work of converting it from commercial into residential (which will not be a problem, I have already talked to the zoning/building code man from the town-I'll just need building permits and such to renovate it), the contract needs to protect my investment and be written in a way that does not screw either of us in this endeavour.  Thank God (literally) that A's niece is a lawyer and her husband a contract lawyer.  Even though A and I are separated, the family still is open to helping.  So, if the contract goes through well, I will begin renovating the inside and maybe even have it done by Christmas (as long as I have enough tie to work on it on a regular basis).

Health wise:

For me, weight loss is still a struggle.  I do well for a few days with being careful about what I eat, watching my blood sugar (ice cream is VERY bad for blood sugar, so is boxes cereal).  But then life gets stressful or busy or something else is going on and I turn my attention to that and fall back to my bad eating habits for a few days.  Then I push forward again on developing new habits, and well it is  a cycle.  I think overall, that cycle is moving towards better and better eating patterns when I look at the overall picture, but I really need a solid month of really focusing on changing my eating habits themselves, so that I fall back on good habit and not on the ones that are so ingrained that there is a rut there.  Two steps forward, one step back is still forward motion as a whole.

Other stuff:

My car is ailing and need work (tires, brakes, steering, etc...) AND i have the money right now to get it all done--so YIPPEE!!  I take the car to the shop tomorrow and hopefully he will be able to get the parts in and have the time to fix her within the next week.  I am guessing it will cost nearly a grand, but as I bought the car for $400 last February and she was worth so much more, it is worth putting that much money into her.

My chick are growing big.  They were hatched on September twenty seventh (my two button does not work) and have been growing well since they arrived by ail at a day or two old.  They are nearly two weeks old and have gotten their wing feathers.  they are still in a big b ox here at the apartment, but will soon be moving over to my father's property.  I have to build a new chicken coop as his is not is great repair.  So i think that will be a project fro the4 coming weekend as they are getting to be a bit too big for the box.  In a couple of months the extra roosters will become dinner (not something I look forward to, it is hard for me to eat animals I love, but I can not keep them, they will fight each other to death as they get older and territorial, only one or two will be kept with the hens.  Then in 4-6 months I should have a bunch of fresh eggs daily.  It will be wonderful.  I have wanted to have chickens for so long.  As a kid, my chore was caring for our chickens, and they were my friends.  I loved having chickens and caring for them.  I have always wanted to have a flock of chickens, and now I have them.  Maybe when I move into the new house I can bring the chicken coop over there, which would be great.

Well, I should end now.  I will write more soon, and when I get my computer back should be able to do short posts daily again rather than these intermittent postings.

Hope you are all well and enjoying autumn--my favorite and most productive time of the year.

Sunday, October 9, 2011

100th post!..Finally...

Okay, so....

Life has been a bit crazy lately.  And not having good access to a good computer  makes it difficult to post.  My good laptop is done with repairs and on its way back finally (it had to be sent back to the manufacturer).  By next week sometime it should be back with me, and I should be back to posting more often. 

So a quick post now and

well, I have to go quicker than I thought I will post more later if I can get this coputer to work again later....