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Wednesday, July 31, 2013

Special Time

We are finally moving out of the observation/gathering information stage of therapy for Iz and getting into some of the hands-on behavioral therapy.  Right now we are in the relationship-building stage where we work on shifting our behaviors to change her behaviors.  Our "homework" this week and last is to spend "special time" with her--at least five minutes a day where we focus on her and let her lead what we do.  During those five minutes, we are supposed to focus on NOT doing three things--giving commands, asking questions, and criticism.  There are five things we are to focus on doing--PRIDE.  P is for praise--not your generic "great job" but labeled praise to emphasis the good things she is doing (you played with that toy so gently, I love how you hugged your brother so nicely, great job putting those blocks together, etc).  R is for reflection--repeated words/phrases back to her as a statement (she says "help?" and you say "you need help", etc).  I is for imitate--we imitate the actions we want her to be doing.  So if she drives the car on the floor where it belongs, we get a car and drive it, too.  If she stacks a block, we stack a block. etc.).  D is for describe--using words to describe her actions (you are closing the door, you are stacking the blocks, etc).  And E is for enthusiasm--being genuine in your excitement over what she is doing.

I am so used to asking her questions when we do things that not asking them for those five minutes is hard for me LOL 

Monday, July 29, 2013

Appointment number two is on the books!

My Busy Little B got his next appointment date for the autism evaluations--Friday we go in for the observation part of things.  Has anyone been through this before?  Know what to expect?  I need to make a note to myself to bring him a snack as the evaluator said a snack is part of the meeting but they don't provide the snack so I need to bring one :p

In other news, I finally got a call from the Occupational Therapy Department at the Children's Hospital for S.  We did the paperwork a while back but then had to wait for them to have an opening.  He will be going twice a week starting next week.  That moves our number of trips to the Hospital to three per week.  At around 80 miles round trip.  OY.  Anyone want to buy a kidney?  (I kid, of course, since that is illegal :p).  Sam's Club will be making a small fortune off of me in gas sales alone ;)

Sunday, July 28, 2013

Time for a party!

S had his birthday way back on the Eighth of this month but we postponed the party until today so he could invite some of his friends at Summer Camp :)  The problem with summer parties is that everyone is busy but he will be happy to play games with the couple of kids who can make it :)  He is so excited!  He wanted a Spy Party so they could play secret agent man (anyone instantly have that song stuck in their head?) so that's what he shall have!  A few last minute preparations and in a few hours we will be testing our Secret Agent Skills :p

Thursday, July 25, 2013

Yet another day on the surgical floor......

Today, I spent yet another day on the surgical floor of the Children's Hospital--S had his hardware removal from his left arm.  This was my fourth pediatric surgery--Iz, B, and now S twice.  After Iz's surgery, someone I know told me she felt bad for seeking advice/comfort before her kid's surgery because his was "nothing" compared to open heart surgery.  I told her that surgery is surgery and fear is fear--it doesn't matter if the surgery is considered major or minor or anywhere in between because no matter what, it is our babies on those tables and that is the only thing that matters.  When I handed B over for ear tubes, a quick "minor" surgery, I was still scared.  Not as long as Iz (and the brevity kept it from getting as intense), but the fear was still there.  The "what ifs" were still there.  If I could have fallen apart the way I did when Iz went back, I would have, but I had little eyes watching me and needed to be strong.  Same with S--both times he went back, it was so hard.  But little eyes were watching so I remained cheery and upbeat.

The fear, though, is always there, thrashing around inside, searching for a way out.  It is a bird, trapped, beating its wings against the windows.  It swells and grows and pushes on every piece of you, threatening to break you down, to burst forth and collapse you.  In the pre-op area, I saw a Mom completely break down, sobbing, and I wanted so much to go to her and put my arms around her and tell her I have been there and I would be there again if I didn't have little eyes watching me.  Pacing the hallways, waiting, wondering.  Watching the clock tick by, counting the minutes until the estimated time of surgery is up, wondering why the surgeon isn't there yet, afraid that the delay means something terrible has happened.  The giddiness of finally seeing the surgeon appear in the doorway and seeing a smile on his face so you know your child, your baby, your heart, is fine before the doctor even says a word.

S's surgery went very smoothly but his recovery was a little rough.  It took a lot longer than anticipated and he is still feeling a little sick but is feeling better and is currently watching Mythbusters :p  It was an emotionally draining and exhausting day.  Every time we have a surgery, no matter how long or how "serious" it is, it is mentally and emotionally exhausting.  I wonder if it will ever get easier or better or less draining?  And I also really hope we never have to find out--I will be quite happy to never ever set foot in the surgical area at the Children's Hospital again!

Tuesday, July 23, 2013

We finally got the appointment....

....for my Busy Little B.  Why, oh, why, was this so hard?  Why did I have to jump through so many hoops?  Do so much driving?  Talk to so many people?  If I hadn't had the pediatric social worker working on this, we would still be struggling to get our appointment.  But we finally got an intake appointment--doesn't guarantee they will actually do the autism testing but its a start.  I guess.  :-\  If they refuse to do the testing, I have no idea what the next steps are.  The pediatricians think he needs the testing and if the local county agency disagrees, where do I go?  What do I do?  Why is this so hard?  UGH.

And they prefer if I come alone.  S is away on a field trip today through his summer camp but I still have two more.  If their dad wasn't able to take them today, how the heck am I supposed to go alone to an appointment?  Its the middle of the day and the people willing to watch him are all at work (he can be.....difficult? spirited? obstinate? fixated? so the list is rather short). It is a frustrating system to navigate through.  But at least we are beginning.  I just wish it was through the Children's Hospital instead of the county :p  I guess if I am looking for a bright spot, the gas costs for driving will be less and that has to be a good thing since all the driving gets so darn expensive....I may need to sell a kidney soon ;-)  (kidding, kidding....that's illegal ;p)

Saturday, July 20, 2013

How are you beating the heat?

My normal too-hot-to-be-out activity is going to the library but the poor library is suffering from this heat wave, too--every time we try to go, it is closed due to the heat as their central air hasn't been working properly.

We have spent far too much time at McDonald's taking advantage of their Playland.

On a good note, we have been going to the pool at the Y about every other day--the day campers are in the pool when I pick S up from his school's camp program and they are a bit too rowdy for the Littles but S and I have been swimming.  Great exercise for me and S gets to practice his skills.  The Littles have been going to the child care room and they are tired when I pick them up so they are getting to run run run and play with all the different toys there.

Sometimes we go to the store and walk around.  Its cool inside and we get to look at things but the temptation to buy stuff isn't that great :p

What things are getting you out of the house yet let you stay cool?  I'm running out of cheap ideas!

Friday, July 19, 2013

Hot & Humid Days

This week has been terrible as far as the heat--every day, the bottom of the screen is bright red with the "EXCESSIVE HEAT" warnings.  We have been spending all of our time indoors and break a sweat just trying to go from the front door to the car.  B and Iz are my sensitive kids when it comes to heat and humidity--it takes very very little to turn them bright red and sweaty.  S is a little more hardy and he happily plays outside for short periods at his day camp.  The Littles, though, need to be entertained indoors and being at home gets old very quickly :p  We have seen the inside of the Playplace far too often recently LOL  But they sure do have fun and the other day they insisted they MUST pose with the giant giraffe :)
He wanted the whole giraffe in the picture
Iz wants in on the action
B tells me to COME CLOSER
Iz abandons the giraffe and B is left laughing by himself :p

Thursday, July 18, 2013

Spaghetti Night

Warning:  This post contains spaghetti covered kids.  And that's about it.  Just because they are cute ;)






Wednesday, July 17, 2013

PawPaw's House

  My Dad always told me that when he became a Grandpa, he didn't want any cutesy names.  He would be Grandpa, which is what I always called my Grandfathers, and that was it.  Up until this year, he got his wish.  But when my Busy Little B had his speech regression a few years ago, he stopped being able to clearly say Grandpa.  He has used garbled versions of it the past two years but a few months ago, he switched to saying PawPaw and nothing can dissuade this kid from using it.  He has used it so often and so consistently that S and Iz say it, too.  So does my husband.  So do I.  So does my Mom.  And the other day, my Dad gave in and has started using it, too LOL  

The boy who started the PawPaw craze
My parents recently bought their very first house and the novelty is very attractive to my kidlets so I hear, "I want go PawPaw's House!" on a daily basis.  Last weekend, my parents had a BBQ so my kids got to spend hours playing at PawPaw's House (It wasn't enough--they were very sad that no sleepover invitations were extended).  PawPaw got them some airplane kits and much fun was had flying them around the yard (and over the fence into the neighbors yard and up on top of the awning in the backyard and onto the top of the cars.......).
So excited about the planes!
What was that?
Most of my pictures of her are the back of her head, running off to see something else :p
Ready to launch
Leaving the "Captain's Chair"

Tuesday, July 16, 2013

First Pigtails

This is a terrible picture, I know.  But she wouldn't stop moving and this was the best one I got :p  The other day, Iz kept pointing to my ponytail so I asked her if she wanted her hair done up, too.  She was so excited--kept bouncing up and down, clapping, giggling.  S picked out some pony tail holders (bright pink, to match the pink in her OCC "shirt" (it was a dress but she quickly outgrew it but she loves it so much it graduated to shirt status :p) her Daddy bought her before she was even born) and I did the best I could to get pigtails in a squirmy, bouncy almost-two-year-old.  She kept touching them and going, "WOW!"  Because she kept touching and tugging on them, I didn't think they would last long but she left them in for a couple of hours.  I have no idea what she did with the holders, though.  She took them out in the car so I'm assuming they are under a seat or something :p 
 

Monday, July 15, 2013

Frustration

I am feeling so frustrated.  It seemed as though it took forever to get my kids moved over to the new pediatrician practice out of the Children's Hospital.  It was a hard decision.  Not the decision to actually move them as we knew they would get better care, but the logistics to go with it--it is a time consuming trip and a pricey one (please, gas prices, come down) but well worth it for the level of care.  S and Iz are already off and running with referrals and have both started working with a psychologist for help with their anxieties (and S's ADHD).

But my Busy Little Bee, *sigh*  We know something is going on but no one really has a clear idea what it may be.  He pretty much failed every section of his developmental screening and he scored "high" on the autism screening so he was referred to the Children's Hospital Autism Center--more driving, more time, but I was good with that because of the fact that it was the CH.  And then we hit a brick wall.  His insurance only covers autism stuff with kids in the same county as the CH--we are not :\  So we got referred to our local county services and I have been running in circles for two weeks now trying to jump through their hoops.  I have done everything asked of me, as soon as I possibly could, and he still doesn't even have an appointment :(  I am so so frustrated that we got bumped back to this county :\ 

Sunday, July 14, 2013

Birthday photos!


S had his birthday this past Monday :)  We didn't do a party yet because his summer camp program at school started on Monday and he wanted to be able to invite some friends to do something fun so we are going to do a party later this month.  All week he has been trying to decide who to invite and what they should do (current wish is for a fun BBQ at his favorite park with lots of games and a "spy" theme) so he can make his invitations this weekend :p

But the actual birthdate can't pass without a little celebrating, right?  So he picked out a cake at the store (chocolate with cherries on top) and helped put the eight candles on it and then acted all shy when we lit it up and sang to him ;-)

You can almost see his brain turning, trying to decide on a wish

Almost got them all!

 It has become a tradition in our house to light the cake several times.  It started when S was small because he liked to blow on the candles and we would let him do it a couple times.  And then when B got to the age where he was able to blow out candles, he liked it so much that we would light them up a few times for him.  So now, everyone, including the adults, gets their candles lit a few times so they can be blown out over and over.  Although the adults usually let the little kids "help" and blow out the candles for them.  This year, S blew them out a few times and then asked B if he wanted to blow some out, too, which made B so very happy :D

Nope, didn't get them all this time, either.


  



Friday, July 12, 2013

A dollar reward

The other day on our way home from yet another trip to the Children's Hospital for yet another specialist appointment (S and Iz both this time)(I think the gas prices are going to be the end of me.....), we stopped at the grocery store to pick up a few things (lettuce, carrots, celery).  Because we were only grabbing three things right at the front of the store, we didn't get a cart.  We all held hands and the boys proudly helped carry our items :)  They love to help but usually get distracted on a longer trip through the store.

We are lucky and a lady is walking away from a self-checkout stand just as we are coming--we can just scan and go!  However, she apparently missed some of her change because there is still a dollar in the paper money tray.  S and I both call out to her to let her know she left her change and she comes back, telling us she doesn't know how she missed it.  She gets it from the tray, turns and bends down, and tells S it is his reward for being so honest :)  He was so proud of his reward and posed with it when we got back to the car :p  The dollar is now gone, traded in for a Despicable 2 Minion whistle from McDonald's.  And while I am quite tired of hearing the whistle, I have yet to say anything because he is so very proud of how he got it :)

Thursday, July 11, 2013

Giggles and cuddles

The other day, Iz had a fine time crawling all over me and bouncing on me and just being mischievous.  She would stop and grin at me and then collapse with giggles :p
Grinning at Momma
Giggle Girl.

Later that day, she enjoyed cuddling with her Big Brother on the sofa in jammies during family movie night.  She watched a few moments of the movie here and there but mostly played with her toys or looked at books LOL

Movie Night!
















Wednesday, July 10, 2013

Ironman!

As S gets older, he has started to outgrow his obsession with costumes.  He used to love putting on costumes and wearing them around the house :)  The very first costume he bought all by himself was Ironman--he has gotten a little bit of money in his Halloween bucket and a few days after Halloween spotted the Ironman costume on the clearance rock.  He had almost enough to buy it and we pitched in the rest and it has become a favorite and well worn costume.  If you look closely, you can see some of the seams are ripped out because S wore it far past the point where it fit him.

But B doesn't care!  The costume is still a little long for him (he is stockier than S was at this age so he has already outgrown clothes S wore at four but he is shorter) so he likes to roll up the sleeves and legs and turn it into a short-sleeved shorts Ironman costume LOL  But he loves to wear it and at least once a day I hear him shout "IRONMAN!" and if you search him out, you'll see him doing his Ironman pose (see picture).  On this particular day, he got his costume all ready and told me he wanted snaps (his picture taken).  He struck his pose and said, "IRONMAN, cheese!"

Tuesday, July 9, 2013

Age Four

S and I were looking at photos and he was having trouble telling which photos were him and which were B ;)  Here they both are right around age four (S was about a month away from four and B is a week after four)



Brothers!

Monday, July 8, 2013

Happy Birthday!

Eight years ago today started as just another day.  I was on bed rest so I spent the morning laying on my left side.  I had a routine OB appointment.  A few days earlier, I had seen my perinatologist--the PIH was beginning to affect my organs so he wanted delivery soon but we were only in week 36 and his goal was to see if we could make it to 37 weeks.  At the NST at the OB's, nothing they tried got a response out of S.  We tried for well over an hour.  We went to the hospital next door for an ultrasound.  He was OK in there but not great.  Still not getting the responses they needed.  We were having a baby!

We were induced and things were moving slowly but moving.  We took a break overnight so I could sleep.  Started up again in the morning.  After many hours of labor, he and I were both in distress and things moved very quickly after that and things are a bit blurry for me.  Wheeling to the OR, the anesthesiologist in his mask and smiling eyes, my wonderful OB reassuring us that things were going to be just fine, the cry of the little boy I had been waiting to meet.

I don't like it out here!

Well, maybe it isn't that bad....

So tired.....

Pretty good grip for being brand new, eh?

Tiny hands

Being new is exhausting--need a cuddle and a nap with Mommy

One week old

HAPPY BIRTHDAY, S!

Eight years later and still cuddling with Mommy :)

Sunday, July 7, 2013

Playland

All of the rain we have had lately has really put a damper on our summertime fun.  Our yard is unfortunately full of low spots and is terribly wet and muddy.  By the time it starts getting almost dry enough to play in, the rain rolls through again.  The local parks are a little better but the rain is coming so frequently that we never quite seem to make it before the next storm is coming.  So every few days we end up retreating to Play Land because they really really need to just do some running and climbing and wearing themselves out :p

Before Iz can do anything else, she has to make sure all shoes are in the shoe wall.  We typically have the boys leave their shoes near the table but lately Iz has been insistent that they shoes MUST go in the bins--guess we trained her a little too well at home ;-)
Putting away the shoes.

The moment we walk through the door, B has those shoes stripped off and he disappears into the play structure.  After a few minutes, he normally comes down the slide, runs over, waves, and disappears again.  On this particular day, his journey down the slide was accompanied by yee-haws and woo-hoos.
Telling me the slide is "up high" and he "came down"

Iz is sometimes brave enough to venture up into the top layers of the play structure but she is usually content to climb in and out of the bottom layer and run around the open parts of the room :p  She also likes getting up and down on the chairs at the table.  When I snapped this picture, she had climbed up, looked all over the table, and signed "more" (her way of asking for food).  She looked quite distressed that there was nothing for her to nibble or drink.  After this photo, we told her we would get her a snack and she was all smiles.
Where's the food?

She climbed down from her chair and ran off to play....or so I thought.  She was actually going to get herself a comfy chair LOL  She got a high chair and dragged it over, put it in place next to me at the table, and then climbed in (I held it to make sure she didn't tip it over--she has gained an independent streak lately and wants to do everything herself).
Getting ready
They had their snack, played some more, and then complained that we had to leave, even though they were tired and sweaty :p