Friday, August 13, 2010

Stuffed, sloppy, & sleepy

Well, it's a Friday and I have just my kids here today which has been kind of nice as we've been able to prep the front boys' room for rearrangement.  Remember, we're moving all the boys to the front bedroom.  All 5 will be in there.  Yana and Irina will remain in their own rooms downstairs and then Alyona & her new sisters will be in what is currently Max & Bojan's room.  Phew.  So, moving around furniture, putting bunks together and getting rid of stuff.  Needed to be done anyhow.  Then, we have to repair all the damage done in Max & Bojan's room.  Trust me, there was plenty.  There is a huge hole in the wall along w/ many little holes.  Writing all over the place and a ruined heater.  don't even want to know what they did w/ that.  They lost the knobs to the closet doors too.  URGHH!!!  Bojan & Max are most definitely going to be helping in repairing that room & prepping for paint.  Alyona wanted pink but we'll do a more neutral color in case we have to sell in the spring.  We'll pink it up w/ bedding & accessories.  We've been working on this literally all day long.  Taking a break now to type a post & kids are watching the Wizzard of Oz.  All of them. 

The other day Alex came in for leftovers. 

I think Alex took in more than his stomach could handle.  he threw together rice & homemade marinara sauce.  Yuck.  But, he ate it.  Dining room table is the dumping ground for glasses before exiting to the pool.  Can you tell?  

Could not believe the generosity of one of our friends.  This mess was not only in the living room, but hallway and kitchen too!  Boys AND girls clothes.  Kids had so much fun trying them on and even called a friend over to try stuff on too.  With so many choices, they had a tough time deciding but did great.  Each got a pile of clothes and just in time for school.  It was awesome as clothes and shoes are so expensive for us.  It really helps immensely.  Thanks a billion Renee!!!  

In a bathing suit wrapped up in blankets.  You'd think common sense would say go change.  Umm, nope.  Alex is content just watching a show after a swim.  This weekend those mattresses & bunks in the dining room are being moved upstairs.  

Not much else happening here.  We decided to go to yardsales tomorrow morning.  Think Irina and I will go this time.  Yana went w/ me last weekend.  So many sales & we always have a great time w/ good finds.  Sometimes, we bring breakfast home for everyone.  Might have to be a donut day tomorrow morning.  After all that, we're planning on taking the kids to some of the free museums downtown.  Ice cream treat afterwards.  I'll have pictures for sure.  Enjoy your weekend everyone.  They slip away way too fast.  We have only 2 more weekends before school starts.  Getting ready for it. 

So much happening next week.  2 big things.  We get to get Nik's surgery schedule and we get to go for Bojan's appointment to see about his legs and what surgeries are needed.  This is our second opinion.  We also have Max & Yana's open houses at school &they'll get their class schedules.  Irina and Alyona go to the dentist.  We'll be busy for sure.  Got to go.  More to clean up today. 

Flabulous to Fabulous

Well, totally forgot to weigh in this morning but will do it next week.  I can tell you I am getting stronger for sure.  I feel better.  Well, when the allergies aren't in full force.  Best part is, I think my hard work is showing somewhat.  I have horrible family history in regards to the heart.  High bp & cholesterol run in my family & so I am followed by a cardiologist as preventative maintenance.  I am on NO cholesterol meds & plan to keep it that way.  Anyhow, as part of maintenance, they check me ever so years w/ a stress test.  And not just any stress test.  This is the big guns folks.  The nuclear medicine stress test.  They inject you w/ a radioactive isotope so they can clearly see everything in your heart and how it functions.  Blood flow, arteries, etc.  I went to the room waiting for my results and cardiologist said "it's perfect!"  Nothing's broke so we're not changing a thing.  Then he said "go out and have a nice lunch."  I go back in December for a cholesterol check.  I was more than thrilled that it came out that way.  When you have children and special needs children, you want to make sure that you above all stay healthy yourself.  I'm working on the weight part but nice to know the heart is here to stay awhile.  LOL.  I am doing cardio almost every night.  Weightlifting everyday and will get back into the walking again.  It honestly is hard to want to walk when it's over 100 degrees and so humid that you literally start sweating when you walk outside.  Still determined to lose 20 lbs. by the time we meet our kids so I definitely need to hustle here.  Just had to share the good heart news.  Enjoy your day everyone.  Be active. 

Thursday, August 12, 2010

Thoughtful Thursday

Time for another addition of thoughtful Thursday.  For those new, it is where we find one thoughtful thing our children have done during the last week.  We feel with children with mental and behavioral issues that this is very important to do.

Nik-- Grabbed 6 cookies.  Was wondering why until I saw him give 3 to one of the littles.  'E' was excited about Nik's kindness.  Obviously.  What 2yo wouldn't be happy to get cookies.  LOL.  Just thought it was very thoughtful of Nik to think of someone else.

Alex-- Really was extra cautious in helping out Bojan when he was injured by Max in the pool by accident.

Bojan's face says it all.  But, Alex was asking if he could help get Bojan anything & truly showing compassion.  Again, rather hard for a child w/ RAD to do sometimes.  I was thankful Alex was thoughtful.  At the moment.  (later on, he & bojan got into it & Alex punched him in the gut saying sorry, sorry.  This was after Bojan had sat on his head.  Some days, I just don't get boys).

Alyona-- Been helping all week long with 'S.'  Really loves to help take care of her whenever she needs it.  Thoughtful indeed.

Bojan-- I looked over and Bojan was folding the laundry in the living room.  Wasn't even asked to do it, just was being nice.

Yana-- She offered to have Irina go walking with her when Irina was all distraught this week over her weight.  A very thoughtful gesture and it was demeaning in any way.  Just one sister helping another.  (trust me, a rarity w/ these two lately). 

Max--max has been helping fix little things around the house.  He backwashed the pool for me, started to mow the grass (though not finished yet), and just really anythign that was said, he'd get right on it and do it.  Some things would just be said out of the blue...this needs to be done or that and Max would start doing things w/out being asked to.  Just knew Warren & I had needed help this past week.  Thoughtful kid for sure.

Irina-- Knew dad had been working very, very late and went ahead and made him coffee for when he came home.  Also, Irina just left to go help her friend clean up her room.  thoughtful indeed.

Wednesday, August 11, 2010

church-- a comfortable place

We have been trying to find a church that ALL of us feel comfortable in for quite a few years.  We had been going to one for awhile until it got too big.  For us, we wanted a church we could all feel very comfortable in and one in which the pastor would not put down other religions.  I always hated going to a service where someone would do that as we feel everyone has the right to worship the way they want to.  Anyhow, it also has to deal with people welcoming our kids as well.  Some FAS children will obviously not sit still during  a sermon or rock back & forth.  So, we were on the lookout for different places to try.  For the past few years, we have been going to Upwards at a church in Raleigh.  Though it's only about 15 minutes from our house.  Our kids have also attended VBS there.  Last weekend was the last of the VBS and we decided to go that Sunday.  Here are a few shots from it & I'll talk more below about the rest of what happened.

Alyona & Nik.  I have no idea why Alyona was upset in this picture.  She loves wearing dresses though & insisted she wear one this time too.  Though a little upset the flower fell off of it, she handled it well.  100 degrees outside and my kids have a blanket on.  Go figure.

Some of the kids from VBS performed some songs.  Nik, Alex, Alyona & Bojan were on stage for this.  I was surprised Alex was so into it.  Usually, he is not.  Bojan of course could do a solo act if you let him.  LOL.

Max is up on stage reading scripture.  BIG for him.  It is hard for him to speak in front of a crowd.  Very proud of him for taking that step.Notice the lady there to help him if he needs it?  She's the one who does a lot of the youth activities.  Amazing lady to put it all together.  

Back to the church.  As I said before, we've tried out a few churches and even some activities for the kids at the different churches.  AWANAS was a great program at one of the churches but since my kids have memory issues, they could never memorize the versus and therefore, felt bad about not getting to get the award of moving to the next level.  Now, take the church we have been taking them to for VBS and Upwards.  They have friends there and other kids are not afraid to talk to them.  When people meet us, they genuinely ask questions and don't make unnecessary comments.  They make us feel welcome.  And, they ask about the kids...not about their special needs.  I was asked what school they go to, how old, etc.  Never about what special need does each one have or anything.  Topic came up but it was never outright asked.  They asked normal, kid questions.  In fact, in a small group during VBS we spoke w/ fellow church members and all of us were talking about the crazy things that kids do.  It was awesome.  Normal conversations and we were included.  That is the one thing I always felt at this church...included and welcomed.  The kids have asked when they can go again.  

See during the VBS week, we were able to get to know more people at the church.  Just was a nice family atmosphere.  Then, on Sunday, we were able to really speak to people more after the service.  It was so wonderful.  The sermon itself was on faith which has a lot of meaning to us for obvious reasons.  I've always said adoption is a leap of faith.  The pastor spoke of how it is easy to have faith when things are going right but how about when times get tough?  Lots to think about and just a pastor who puts things in perspective.  We like that.  In all our times going there, we were never pushed into attending church there or hounded by calls.  We were able to go at our own pace and I truly appreciate that.  So,  we sat down for a nice lunch to chit chat some more w/ folks while the pastor had to own up to a bet w/ the kids of VBS.  He took a pie in the face for them.  Here are some pictures from the lunch.

I was SO embarrassed by Bojan.  This is his pile of dessert AFTER part was scrapped off onto someone else's plate.  He claimed that he couldn't cut it right.  Umm, yeh, right kid.  

Don't know why I have so many Bojan eating shots.  Lunch was burgers/ hot dogs, chips, pasta salad and dessert.  My kids ate plenty and apparently entertained folks as well.  All have made friends every time we go here and I like that about church.  We always felt a church should be more like  a family.  This church helped to put our kitchen together when we were beyond swamped w/ stuff to do.  It was amazing that they did that back then for people that just attended their Upwards program.  For us, that is what it is about.  Christians helping Christians in time of need.  They do this all the time.  Not just us but other people as well.  They do missions trips.  Active in the community and reach out.  I like the warmth, kindness, and generosity of the people at Ebenezer UMC and know now, we have finally found a place where we feel comfortable as a family attending church there.  Can not wait to go back on Sunday and neither can the kids.  Now, with our bunch, I can not guarantee we can make it every Sunday.  But, we will definitely give it our all.  Thanks for being so welcoming.  Means a lot.  The teens have even asked about the youth program so we are going to check that out too.  Had to share b/c I know for a fact other families w/ kids w/ FAS and RAD also have issues attending church.  I do believe everyone has a place that they fit in to a church family.  Like us, sometimes it just takes awhile to find the right fit.  A church that is patient with us is important to us.  Thanks for letting me share. 

Distraught daughter

Sometimes we go through experiences as parents that we wish we didn't have to.  That was us the night before last.  Irina is our oldest but due to her disability is socially maturity level wise that of about a 12/13 yo girl.  So, you need to watch what you say as she will twist things the wrong way.  Well, the other night she had a complete meltdown.  Just absolutely and totally distraught over the fact that none of the pants we bought her fit any more.  Now, I have been telling her for months that she needs to get out like she used to.  But, the school situation fed into her anxiety and things just did not go well the last semester.  Add to the fact that they only have to take P.E. one semester and well, not a good combo.  Irina gained weight.  However, this weight gain has coincided w/ a medication dosage increase.  Some of the drugs my kids are on can put on massive weight gain.  That is why they are monitored closely.  Anyhow, at this point though, I do not think it is a medication issue.  I will know in about two weeks if she hasn't lost any weight. 

You know how some things kids just need to experience themselves?  That was the other night.  And b/c of her maturity level, I had to watch what I said.  So, I made it about BOTH of us needing to loose weight together and that I would help put a plan together.  She knows I used to help train athletes and put plans together all the time.  I said we are to focus on the future and not what you did or didn't do the last few months.  She agreed.  Next morning we woke up(late of course) and went straight for a walk around the neighborhood.  She then went swimming w/ her friend & went walking later too.  Irina was asking me what she should eat, etc.  She is serious and committed.  I think she had to see for herself that she was gaining weight from lack of activity level.  What she also does not understand is in the preteen years you eat a ton as your body is growing but that stabilizes in the late teens.  Eating needs to decrease to accomadate.  I'm trying to teach her but also have to word how I put things.  If she does do all this though & gains anything or doesn't loose in 2 weeks, then she'll go straight back to neurology for a med change.  I have NOT told her the meds may be a contributing factor or she'd quit cold turkey which could literally be deadly for her.  But, it has been two days and she's still on this exercise kick(not obsessed though) and much, much happier.  I see a change already & I know this will be a good start.  Thought it important to share  b/c we deal w/ all sorts of normal teen issues here too.  Yet, we have to find a balance in how to deal with them since our kids chronological age does not match their mental ages.  Right now, she is swimming w/ her friend. 

So, I have one daughter training to be on track and running everyday and one daughter starting an exercise program to get healthy again.  Now, I need to make sure I keep up w/ them!  My other teen son Max wants a weight set.  I used to be very, very into exercise & health.  I think my teens are going to help force me to get back into shape.  LOL. 

Irina's anxiety can sometimes get the best of her.  It is hard to deal with for sure.  She tends to worry sometimes about the things she can't control.  Showing her though the things she CAN control, is a big help for her.  I want to be able to give Irina the tools she needs to deal w/ bigger issues that may come up later on in life when she may live on her own.  We want her to reach her fullest potential and teaching her how to calmly deal w/ her fears and anxiety will prove beneficial later on in life.  I hope.  Can't hurt. 

So, even though we calmed her down and she finally went to bed around 11, I still had to work out.  Had to keep my word.  yep, an 11 o'clock workout that evening, little sleep and then an early walk the next day w/ her.  Sometimes being a parent is tiring.  LOL.  I know I still have some pictures to post at some point in time.  And the other FAS posts. 

Tuesday, August 10, 2010

New windows...overdue post

As some know, we have some of the BEST friends ever!  So much so, that some of the friends we know volunteered to come here and help us install windows on the hottest days of the summer.  Literally, the hottest on record!  117 heat index in Raleigh.  Crazy dog days of summer for sure.  We even had friends take the four youngest kids so that they'd be out of the way.  Excellent idea btw.  So, below are some window shots.  Just look at what friends can do.

Damage doesn't look so severe here but trust me, it is.  There was rot for sure.  

Boys interested in watching what's about to happen but just a bit to hot to watch.  Alex's heat issues(body temp) are always ever so present in the summer time.  Trust me, they had much more fun where they went versus watching everyone help install windows.

And, windows are OUT!

And, the finished product.  You can tell the windows are a bit darker than the others.  Much, much more efficient too.  And, the rot is all gone.  The others w/ rot, we are fixing ourselves.  These were the ones beyond fixing though.  

We could never have done this alone.  That was quite evident the weekend this took place.  We could never thank everyone enough for all their help.  We will somehow pay it back to them one day.  Don't know how, but some way.  I do know if they ever need house help, we'll be there.  Thank you from the bottom of our hearts. 

Busy, busy day

For staying home, this has just been one heck of a day.  Got a lot accomplished but still so much more to do.  Haven't heard from the surgical schedulers yet for Nik.  Hope to this week.  Got Bojan's records transferred to Duke for a second opinion and to decide what to do w/ his legs.  He has two major surgeries we will need to attend to.  His appt. is next week.  Yana's migraines have gone away so we are good there.  For now, everyone else is fine w/ doc appts. 

One major issue I'm trying to tackle is schooling for Irina.  She is taking the occupational track in high school for special needs.  Now, they have just built a new high school that we are indeed districted for.  However, she is not allowed to attend as they will not have an OCS program there this year.  yet, they will have one there next year.  I didn't really want to homeschool her for just one year but looks like I may have no option.  Returning her to the "prison-like run" school will devastate her.  See, there are no self-contained classrooms in high school.  And though I know some disagree w/ me, inclusion in some instances is very, very bad.  Irina is a sweet soul and compassionate for others.  Very hard worker and self-motivated.  In the regular setting last year, she is called retarded, and stupid & a whole host of other things.  So, then she didn't ask questions.  Sat alone at lunch at times.  NOT the high school years I dreamed for her.  Another in her class harassed her and others as well.  Told the school.  Nothing done.  School as a whole got so bad w/ theft they had to install security cameras.  Many teens have died at that school.  Mostly driving accidents.  Big scandal w/ the band director and all that went on there.  The list could go on for pages worth here but won't waste your time.  Just want you to know why I don't want Irina to go here and why she was distraught the entire year.  However, she wants to go to the new Cleveland Highschool that we are districted for.  They may have an OCS program but not till next year in 11th grade.  So plan is to try to homeschool her possibly this year w/ her attending the new public high school next year.  Max is going to this new high school.  Now, this is the plan as she doesn't want to go back to school & frankly, I don't want her to go back.  Plus, I have a feeling they'd stick her on the special needs bus and she doesn't need that.(the kids that are on that bus are severally behaviorally challenged and such.  She has told me some things & know she could not be in there w/ some of them)  Their excuse for this would be it is only the OCS students that are staying here.  I can't take & pick her up b/c I just took on some new kids today for the school year.  Babysitting.  I just have to get busy w/ a homeschooling plan.  I have requested from the special needs central office for them to tell me what I need her to do for the year for her classes to transfer over to the new school.  They said I need to talk to the high school.  Well, principal there does not like us (incident back at an elementary school years ago where she accused me of something falsely).  The vp always went to our IEP meetings at the high school.  Well, informed today he no longer works there but at another elementary school.  Fine.  Still need those classes that she'll need.  School starts Aug. 25th.  So, figuring out what to do from here.  Cooperation w/ schools here is pretty much nill for special needs parents.  Trust me, it's a battlefield and it shouldn't have to be.  We have wonderful teachers but the admins in these IEP meetings & the legal counsel they have make it near impossible to get the required help the kids need.  Dealing w/ the schools is way, way more stressful than dealing w/ any of our kids' medical situations that arise. 

I will be watching another child during the day.  One other reason I was not planning on having any homeschoolers this year.   So, I'm currently trying to figure out what I need to teach Irina to transfer over next year.  Irina is a self-motivator so this works to my advantage.  Also, trying to plan out what I want to do with the children I watch.  Already have some outings I think we'll do weekly.  And, there are great craft sites out there.  Helps that they are around the same age.  Worked better last year when we followed a schedule.  Just need to make sure I fit homeschool into it.  Which, may have Irina do some on her own during the day and spend about 2 hours w/ her at night if need be for other stuff.  Again, learning.  I'm learning how to balance things. 

Bojan got invited to attend an event w/ other prosthetists & amputees & athletes in September.  Think we're all going to go.  It's September 11th and not far from here.  Lots of other little things going on that are too boring to tell you all about.  LOL.  Just know, we're keeping very busy here.  This weekend we are planning on going to a life sciences museum.  Cool place.  Some of our kids haven't been so thought it would be a great idea.  Then next weekend if all goes well, a trip to the beach.  Haven't told the kids that one yet.  After that, school starts and we'll be very busy w/ that.  Busy but a good busy which is wonderful.  More to tell and some more picture posts to catch up on. 

Monday, August 9, 2010

Nik got approved!!!

 For his second implant!  I told him and he was thrilled.  Remember, he has been begging us for months now to get a second surgery.  And when you have a 7yo telling you he WANTS surgery so he can hear more, you listen.  And, we did.  I was told today the team is very hesistant going bilateral w/ him since he does still have residual hearing in that ear.  We understand and I'm sure will have to sign papers stating that we understand he will lose all hearing in that ear.  This is one of those decisions that you have to weigh so so carefully as a parent.  This is very tough and don't think for a minute we don't know that.  We are fully aware of all the risks to Nik getting a second implant on his head.  But, we feel the benefits fully outweigh the risks at this point.  He did very well w/ the last surgery.  I had to take his implant off of him in the shower the other day b/c he literally forgets he has it on.  It's become a part of him. 

So, surgery team will call me soon to schedule.  This I'm sure will be around the time we'll need to get Bojan's surgery.  Why do I say this?  Because historically speaking, we seem to get two kids having surgery at once a few times in a row.  LOL.  But, we have a wonderful support team here so that's great. 

Nik will excel w/ this second implant I feel.  With his disorder AN(auditory neuropathy), whatever hearing they do have, they hear differently every single time.  Hard to learn language w/ that kind of chaos going on inside your head.  This is just so dog gone exciting.  What could make this week better... a homestudy approval.  Keeping fingers crossed on that one!  Just had to share the good news.  I'm excited and Nik is excited.  Keep you posted as to when surgery will happen.  With these CI surgeries, surgery is first, activation is a month or so after that.  Then, months of "tweaking" and adjusting.  Still awhile before we get to see the full benefits of an additional implant but still confident we will.  Now, off to work on the mess of a school situation for Irina.  The littles are here today but Alyona is playing w/ the 3yo (see, a sister will do her good!), and Nik is keeping the other one entertained by bug collecting.  Oh, and a watergun shootout.  Got end of season clearance stuff and gave the 6 boys some waterguns to play w/.  So, from 2yo to 15yo, there is a big water gun fight going on in the backyard.  Hence, why I'm here & they're outside.  LOL.  More to come later.

Sunday, August 8, 2010

Just hanging out...

thought I'd do a few pictures of the kids just hanging around the house.  Here goes.

This is Max just hanging out in his room with a book.  yep, I said a book.  I was frankly shocked to see this too. This is Max's futon bed.  It will be kept in this room when we switch the girls over here.  We're going to paint it white and make it "girlie."  Looks like a typical teenage boy spot, doesn't it?

This is Alyona just after a bath.  She seems to always have a smile on her face.  Well, unless she's eating.  And we all know what a struggle that is.  Alyona is dying to have a room & I can't blame her.  It's about time!  Plan on moving the boys all to the front bedroom some time this month and work on fixing up the  back room for Alyona & her two new sisters.  Alyona has requested pink.  I think I can work w/ that.  Alyona is my girlie girl so shouldn't be too hard.  Maybe sprinkle some fairy dust in there & dream big!

Kind of blurry but loved catching that toothless grin on Nik.  He was laughing so hard that night.  

This is what my son keeps doing....sticking magnets all over his head.  bTW, he used to stick crazy refrigerator magnets to his implant spot and crack up.  Told him that was NOT allowed.  He doesn't do this too often.  He also sticks them on his lips and nose.  Nuts, huh?  

Max, making Yana into an Avatar at rest.  Color matches the movie, doesn't it?  They like the new hammock & it holds more weight so more than one person can get on it.  We are going to "try" to attempt to patch the old one up but not holding our breath on that one.  Would love another just like this one.  We'll have to wait & see one day.  Love that the kids rest here, read here, step away from a tense situation to here, etc.  Going to get more shrubs growing for sure.  

Last hanging out picture is Irina listening to her ipod.  She is currently the only one in the house that has an ipod.  See, FAS children do not do well w/ abstract concepts nor do they do well w/ money.  So, we have never given our kids an allowance.  However, occasionally we'll go out & buy different things for them & say what it is for.  Irina recieved this 1) b/c she is 17.5 yo & 2) because she helps out a lot around the house.  We told her this is why we were getting her this & she had no idea that was what was going to happen that day.  We got in the car & she said "now I feel like such a real teenager!"  It was so worth it.  You have to remember, with an FAS child, their maturity level socially & responsibly is about half their age.  That is why we wait much longer than most in letting our children have access to certain things.  None have cell phones right now.  Irina will most likely get one later this year.  I said they can have one once they get a job.  And,to set that example, I do not have a cell phone either.  

Max helps immensely w/ our yard work & grilling.  So, he chose to get a camera w/ video capabilities & such.  It's actually a really cool camera.  Other than a few stupid videos he & Bojan did, no abuse of it or anything.  He chose this over an ipod & made sense.  Max isn't into music much.  Yana was on the path to get something but then got in serious, serious trouble & was grounded the entire month of June.  So, though we don't pay our kids an allowance, we do something else instead & explain why they are getting said item.  They also know this doesn't happen weekly or monthly.  It is random as it is usually a higher ticket item.  Works for us and eliminates the whole money issues we have with our kids effected w/ FAS.  

Got sidetracked on the end there.  Sorry about that.  We had a wonderful time at church today & have so much to say about that in another post.  Can't wait to share.  Anyhow,  hope everyone had a wonderful weekend.  We have lots & lots to get done this week.  and, I think we'll actually accomplish a lot.  More to come later.