Sunday, July 31

Little Miss isn't so little...

Lynae has grown up so much this summer. Spending so much time with her older siblings has brought out some good (and not so good LOL) things in the 'baby' of the family.

Lynae has decided that she wants to be toilet trained soon.  She takes every opportunity to go potty when the other kids do, and has already determined that she will be wearing pull ups like the boys wear.  To the point of taking her diaper off herself to go potty, and going to the changing table, finding a pull up, putting it on herself, and putting her pants back on.  Wow, the independence... It's amazing to see her so independent at 22 months old...

Speaking of independent, we went shopping for school shoes the other day.  I started with the boys.  I took their shoes off, tried a pair of shoes on, tried another pair on, and then put their shoes back on.  With Aleksa she took her own shoes off, I put a pair on, got her to walk around a bit, put another pair on her, then asked her to take them off and she put her own shoes on as well and I fastened them for her.  I got to Brianna and she took her shoes off, tried on the new shoes, walked around, put on another pair and I fastened them for her.  She took them off, put her own shoes back on, and went on our way.  Not much help needed.  Then... Lynae walked over to where I'd mentioned her size was earlier.  She sat down and took her shoes off.  I gave her a pair and she put them on, stood up, took them back off, and at that point decided she was done, and put her own shoes back on and we left (without buying shoes for her... she didn't need any!).  It's amazing to see her grow and learn.

I know the things she's doing are on target for her age, and many people say that your younger child will make you realize just how far behind your older child with Ds really is.  Or, you'll think that your younger child is some sort of genius since they're doing things so much faster than the older child.

For me, it seems that although I do realize how far behind each of my kids w/ Ds are... and it is certainly more obvious with Lynae coming up and passing them when she's 3 years younger than the youngest of our crew (Micah).  I think that rather than feel badly that our older kids aren't hitting the developmental milestones, or think that Lynae is a super genius, I am more so just encouraged that she is following their lead (in potty training) and they are striving to follow her lead (like Brianna trying to be more independent with other things that Lynae wants to do!).

I love the 'mix' that our different kids provide for one another!  I love to see our Peanut coming in to her own and striving to be like her siblings.  I know that pretty soon, she will have passed up the other kids, or most of them anyway, but they will continue to learn from her, and she will always love them for exactly who they are!

Saturday, July 30

Let's talk accommodations and modifications...

For your disabled and/or adopted children...

First off, modifications are things that have changed in the actual things that are being TAUGHT.  For instance, if a child in 1st grade isn't ready for two digit addition, then the MODIFICATION is that the curriculum changes and 1 digit addition is done with that child.  The accommodation made would be crossing off the "tens" column for their work so that all the problems are 1 digit addition again.  Or, if a child is working on addition when subtraction is introduced, change the minus to a plus it is an ACCOMMODATION which changes the activities so that they can be used with a MODIFIED curriculum of addition instead of subtraction.

Clear as mud?

Four of our kids will require modifications and accommodations this year.  The modifications (actual changes to the curriculum) aren't so important right now, because one class (Aleksa, Emma, and Wesley's class) will automatically use a modified curriculum which will be further modified for each of them.  Brianna will be between the regular kindergarten class and this class (a supported level classroom).  The ACCOMMODATIONS that we need to put in place for her are what I'm really interested in.  Not just those that refer to the academics being taught (tho those are great, too, such as those I listed above with math!), but especially with her being involved and capable and independent throughout her school day.

One idea others have shared with me already include a peer buddy (from her Kindergarten class) who will sit next to her in the lunch room and help her to ask for help if she needs it as well as to prompt her to leave when it's time.  Obviously, the first few days/weeks of school this routine is new to EVERYONE, so help will already be available.  But as the other kindergarteners learn the routine, Brianna may take a little longer to get there, or may not be able to tune in to the person on the loudspeaker when there's so much other noise in the cafeteria to start with.

Another was to use something she can do independently that is still educational (such as the iPad) to both supplement the curriculum and be a reward for working on the other skills.  Brianna's kindy teacher has already talked to us about doing this with her, which is very encouraging (but we already know that she is a GREAT teacher!).  Since Brianna's teacher has had many other inclusion students in the past, I know she will have other great ideas as well, but I still want to post up here because I'm sure many of you have created your own modifications or found things that did/did not work for your kids and I value your experience!

Immune Support

So...What are some good immunity support supplements we can introduce to our children this week to build up their immune systems in preparation for starting school in just 11 days?

I know of a few things, and I'm looking around online to find them.  I'm specifically looking for supplements, though I know things like Orange juice are great, since several of my kids' intake is so specific that I'd like to be able to give them the boost as well (such as James and Wesley both on Pediasure almost exclusively... so something that I can add to a meal or drink).  It also needs to be either a powder, crushable pill, or liquid form...

Off to look but thought I'd ask here as well :)  Thanks!

Friday, July 29

Loving Summer

This week has been a laid back week of just playing together, relaxing, enjoying being home and together, and it has been great! :)

We've sat together and looked at books, watched movies, played games, worked on sitting together and played games as a family.  We've been swinging on the porch swing, danced to blaring music, and made tasty snacks to munch on together.

This week I've also gone through our school supply lists and I think we have almost everything that we need!  I finished registering the kids for school and talked to Brianna's teacher to begin planning for her school year.  We've still had our speech therapist come, but no doctor's appointments all week this week.  It's been a nice week of family time for all of us :).

Next week we have a few different doctor's appointments.  Lynae goes to the cardiologist to see what's up with her minor murmer.  We believe it is a PDA and will get more info and see what the plan is from here.  I imagine it will be a "wait it out another year" for her, but you never know.  We also have Micah's pre-op next week for another set of ear tubes.  And on Friday Wesley is being fitted with a 72 hour EEG which he'll wear over the weekend.  The following Monday while Wesley is having the EEG leads removed, Micah will be getting his ear tubes replaced.   It's hard to believe that we start school just 2 days after that!!

I've heard of one school district in TN that has a 1/2 day on the 3rd and starts school after that on the 8th.  Ours is the 10th along with a few other districts.  When do your kids start school?  Do you wish it was earlier or later or like the timing?

I always think school starts too early simply because I love having the kids home and I think I'd feel that way no matter when it started.  That said, I'm glad it does start when it does, because I like getting OUT of school when we do in late May :).

I just can't believe it's already time to start school again!!

This year Kristopher will be in 2nd grade, as will Aleksa and Emma.  Brianna will be in kindergarten and Wesley will too.  Aleksa, Emma, and Wesley will be in the same class and Brianna will go to that classroom for reading and math, but otherwise will be in a regular kindergarten class.  Also, Wesley and Emma will start the school year going only a few days each week.  We hope to work up to a 5 day week by the end of December and start back with 5 days in January.  James and Micah will both be in pre-k again this year.  James just makes the cutoff (September 1st) to go up to Kindergarten and Micah just misses it, but both boys would benefit from another year so that's what we're doing.  I believe that the teacher the boys had last year as well as the teacher that Emma had last year will both be returning.  Those two teachers will teach 6 of our 7 kids. So, we'll have just 4 teachers (and a million therapists LOL) between all of our kids. (Brianna will have two teachers...)

Oh, and I weighed all our kids yesterday just out of curiosity.  It was interesting to see which kids are the same weights!

Aleksa (8yrs 9mos) 43.8 lbs
Emma (8yrs 5mos) 34.4 lbs
Kristopher (7yrs 5mos) 43.8 lbs
Wesley (6yrs 5mos) 25.8 lbs
Brianna (5yrs 6mos) 29.0 lbs
James (4yrs 11mos) 29.0 lbs
Micah (4yrs 10mos) 31.2 lbs
Lynae (22 months) 22lbs

Maybe we'll try to measure heights soon too...

We're looking forward to an afternoon visit from out-of-town friends today  :)

Thursday, July 28

Questions without Answers

I'm sure somewhere there may be answers, and we have some thoughts about answers, but nothing good yet.

James' spitting up continues to be a big question mark for us.  He does it sometimes two or three BIG times in a day, but usually once every day or two.  Aside from that it's little "urps" here and there throughout the day some days... but not every day.  When James does give it all back up, it's usually right after eating, but could be as late as an hour or so after eating.  When it comes up... it's like nothing has been digested.  Right now, over the summer, it's not nearly as big of a deal as it is during the school year.  But both instances definitely do inhibit his ability to "just be a kid" and us to "just be a family" because we always have to be ready for him to be throwing up, and often times that takes him out of activities or even keeps him out of school on days that he spits up multiple times and they're ALWAYS concerned that he is sick. If we can't get the spitting under control, we will likely have another year similar to last... where we are sometimes sending 2-3 outfits/day for him to be changed in to, and he spends as much time getting changed and having his environment cleaned up as he does actually engaging in educational activities.  not to mention the time it takes to get the food down the first time... or the amount of necessary calories he's losing each time he gives back his meal.

Because his esophagus looks 'fine', our GI's suggestion (we haven't had the follow up appointment yet so I'm not sure this is going to be the final answer...) was to just let him throw up.  That can't be a comfortable solution for him since he always fusses during and frequently after spitting up, and I know that it's not a really happy solution for us, when we clean the kitchen floors 2 or 3 times a day, give him baths twice a day when it's a lot, and we end up having to leave restaurants mid-meal as well as uninstall and wash his carseat sometimes a few times a week...

When he has a day with a lot of throwing up, we have recently begun tube feeding him at the end of the day whatever amount we can to 'make up' for some of the lost fluids.  If he doesn't eat at breakfast, we'll sometimes tube him then.  Even so, he has thrown up DURING a tube feed recently as well...

So, anyone out there whose child is2w'older' (James will be 5 in about 2 weeks) and still has reflux and low caloric intake with dietary restrictions? James is on only Pediasure with oatmeal thickening it because he chokes and then throws up with most thicker or spoon fed foods and doesn't chew well.  Yes, we have speech therapy weekly to work on it!  He is on Prevacid for the reflux, has had an upper GI, an EGD (scope), and a gastric emptying study (solid) done and was taken off of the meds he was on for slow motility due to normal results on all of these studies.  Reflux was shown, but nothing much.  We go back to the GI in about 2 weeks to talk through where to go from here... so I'm hoping to have some suggestions or ideas to bring to the table aside from "just let him throw up"...

All that said, if there's no other good answer for now, then we will just deal with it as we have for the previous year.
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Micah has had these lovely morning icky BMs again.  He seems to go through cycles of this.  He's not waking and making any sounds, just going in his diaper.  No crying after even.  Today, we woke up to find he's gotten "in" to his diaper and his hands were covered, as was his pillow case, his sheets, and the carpet next to his bed...  We did some stool studies last time he went through this and all was fine.  So... we just are hoping he'll get back on a schedule where he goes in the toilet again like he was in the habit of doing just a week ago!   What's causing it... could be anything since his diet varies a lot on a daily and weekly basis while we experiment with new foods and constantly are trying to get him to eat whatever the rest of us are eating.
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Lynae, too, is in another cycle of nasty diapers.  Hers we think is related to her drinking MILK.  She had issues last time we put her on milk so we stopped and put her back on Pediasure.  Then we tried Pediasure with Fiber and had the loose stool issue again.  Now we're mixing milk and Pediasure and again, we're having issues with her stools.  She's moving to Soy for a while to see how she does with that (mixed with Pediasure). It appears she just is more sensitive to milk.  Let's hope anyway.  Her issues definitely correspond to us adding milk, and not with Micah's issues, so I'm pretty confidant that they're not sharing a virus or something.
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Thankfully, throw up and poop aren't what we deal with all day every day, and we are so grateful to have each of our children!!!  It's hard to believe that school starts in less than 2 weeks and our summer vacation will be over...

Wednesday, July 27

Interview time!

I was interviewed by AZ Chapman for her blog.  Please visit and say "hi" to AZ!  She is an almost-20 year old young lady with CP who blogs about her life and family :)

http://lifeofnldcp.blogspot.com/2011/07/cornish-family.html

Thanks AZ Chapman!!

Kidnapped or Saved?

I just read an article which shows the viewpoints of two teenagers after being adopted (years earlier) from Eastern Europe.  The insight is RIGHT ON, from everything I've read and heard in the past, from the acquisition of language, to the feelings of worthlessness.  No doubt, despite our children's special needs and institutional delays as well as developmental delays, our children still thought/think much like these two typically developing girls did.

A little bit of mercy goes a very long way.  A good reminder of why it's so important for us to be patient with our children, though often times it's that very patience that is the HARDEST thing to find!

I hope you'll take the time to read this, especially if you know someone that was adopted internationally.

http://www.adoptionarticlesdirectory.com/Article/Kidnapped-or-saved--How-some-orphans-really-feel-when-they-re-adopted-/115009

Monday, July 25

Digital Filing?

Ever wondered what to do with all the paperwork you feel like you "should save" yet you have no filing or storage system in place for it?  I have BINS of unsorted paperwork which has been sitting in the garage taking up space and growing... dirty...

I have decided to (in my spare time *ahem*) scan the boxes of documents that I have sitting around and TRASH whatever I can!  All the bills that are paid can be scanned and filed for later reference, all the info from doctors and such in reference to our children... all the PAPER  can DISAPPEAR! :)

Now, let's see how good I am on the follow through.  At least going forward, if not going back ward to EMPTY some of those bins of useless paper sitting in my garage :)

So... what things do I NEED ORIGINALS of?  Things I shouldn't just throw out once scanned???

Time for Teaching

We've had some focused "learning" time in the last week or so, time for having all the kids sit together and focus in on a basic learning task.  With school starting in just 2 1/2 weeks, I not only wanted to be spending some time going over some basics of colors, numbers, letters, shapes, but even more so...

remembering how to sit in one place and take turns doing a task!!


James and Micah weren't really doing this at the end of last school year, and really right now they're still not just sitting and staying there.  But, they ARE coming back to the rug when I call them, and they're both participating and enjoying what we're doing :).  Progress...

There are so many simple activities that we're doing, and many are so simple it would be easy to make them out of household things...  Here are some of the activities we've been doing!  Feel free to post your own or make suggestions for improvement on these...


  • Containers with lids that have 1, 2, 3, 4, and 5 of a particular item in them. Mark the outside of the container with the number and a picture of what's inside (plastic fruits/veggies, for instance, or even coins, beans, or something similar, but best to have different things in each container).  Look at and identify the number.  Show it to each of the kids and have them point to or touch the number.  Shake the container, ask what is in it.  Identify the picture.  Open the container, take out the item(s).  Identify what they are, compare to the picture on the container.  Count the items, and have each child touch the items, counting if they are able, or with adult assistance counting (and moving their hands from item to item).  
    • For the visually impaired, hold items close within their visual field if the child has one.  Also, line up the items rather than bringing the items to their reach.  For instance, don't hand them one at a time, but put them in a row and move their hand from one to the next to the next.  That way it's easier to recognize that although the items are the same, there are multiple items, not just the same item over and over :).
  • Using construction paper, cut red, yellow, and blue pages in to the shapes you're working on.  Use them to sort by color for instance using all the circles and separating them in to 3 separate piles.  Then, use them to sort by shape by using all three shapes of one color.  
    • For the visually impaired, hold items close within their visual field if the child has one.  Also, outline the shapes with a texture such as a thick paint or glitter, or some other textured substance for working on shapes.  For colors... well... without a visual field I'm not so sure that colors will be a useful thing to teach :).
  • Using any available medium, create bean bags of different shapes.  Construction paper with tape, material sewn together, or bean bags that are square with shapes attached to them.  Identify each shape as a whole group and find a container to toss them in to.  Take turns with each child naming the bean bag then tossing it in to the container.  
    • For the visually impaired, allow them to handle each bean bag, outlining the shapes of the bags. 
    • For the physically impaired who cannot toss the bean bag, bring them within proximity of the container to allow for success as the child drops the bags in, with assistance if needed.
Those are just a few of the things we've been doing with the kids and how we've adapted them.  :)

Friday, July 22

Another day, another Kristopherism...

Today Kris came in to the room I was working on a project in and said the following things to me... each on a separate trip... Can you guess what he was referring to??

Mom, I'm too tall.  I need to be shorter.

I think you're too short, you should be taller.

Everyone that beats me is fat, I'm going to make myself fat.

I'll only stay fat for a little while.  Next week maybe I'll be skinny again.

I'm already skinny again.  I didn't like being fat.

My friend loves James, so she's a favorite.






And the answer is....

Kristopher was playing with the Wii!  He was messing with all the Mii characters :)

Thursday, July 21

Talking

A thought as I go to bed...

If you could prepare 4 words/phrases for your kindergartener/school age child to have by their side during their first few days of school when they may be too shy to talk to their teachers/peers, what would they be?

I'm considering sending Brianna with our 4 go-talk One Talk boxes (small one button devices with a picture and a speaker that are self-recording).  I'm trying to decide what phrases would be most helpful for her to have along with her.

"I need to use the restroom please," was the first I thought of, and really what got my mind going.  I'm sure there are others... maybe "someone is bothering me" (tho I'm not sure she'd ever use it... just so she COULD if she needed to...?) and the other I thought of was "I need help please."  She can say that she needs to go to the bathroom and that she needs help, but... if she IS overwhelmed, then the voice buttons may prove to be a way to get through her first days.  Of course I'll talk to her teacher, whenever we find out who the teacher is... and make sure that 1- the voice triggers are ok and 2- ask her for suggestions.

But thought I'd start here.  Thoughts on what you'd want your child to be able to "say" without having to TALK on the first week of Kindergarten?

(For those just tuning in, Brianna will be in a typical kindergarten class for most of her day with pull out for math and reading.  She's very verbal and expresses her needs easily at home, but she's VERY shy and doesn't talk much at school!)

The next wave of child proofing...

I'm on to the next wave of child proofing.

The one that includes light switches that are easily accessible and shouldn't be... like the one that works the light at the bottom of the deep end of the pool which would be a BEAR to have to replace... but is left on regularly by fun little fingers that want to turn on every light switch available.

It also includes restricting access to our laundry room area which includes our actual laundry room that doubles as a storage pantry and the adjoining "office" which houses every piece of clothing that any of our children own.  It is too-frequently turned in to a beauty fashion show by two curious little girls... one of whom can now work even the child proof door knob covers.

Another room of restricted-access will be our bedroom, which, with its close proximity to the front door, tends to be where everyone decides to venture whenever they're sent toward the front door to get ready to leave the house.  With its lever-style handle, even the "least OT skilled" of my children can figure out how to get in to our room, find something, anything really, that they shouldn't have, and either hide/destroy/ or eat it before I realize they've gone in.  The computer button is another favorite, since its glowing blue light just BEGS to be pressed...

Our next round of childproofing includes even more bi-fold door locks because I somehow overlooked the linen closets when ordering our first round... and today after finishing putting sheets on 8 little beds... we found a nice "surprise" when we realized the kids had gone behind us and "helped" us distribute the rest of the contents of the linen closet into the beds that we'd already made.  That means I got to fold not only all of the sheets which didn't have enough time to go all the way through the wash therefore were replaced by clean and previously-folded sheets... but also every other linen in the closet.  Towels too! :)

And last, but certainly not least, a way to lock our sliding glass doors OPEN so that while the kids are playing in our play room (a large enclosed porch), they cannot slam the glass doors shut on theirs or anyone else's fingers.

Can you tell some of the things that we've been in to the last few days??  :)

What are some baby proofing things that you've either come up with or purchased which help your house run a little smoother and help you keep the sanity a little longer by not having to worry about danger or destruction coming to your child (or your household!).

Wednesday, July 20

Ok... a little more...

I do realize I left two kids out of my last post.  So, I came back when I could to post a little more.

Mostly, those two are just taking things as they come and doing good, which is why I didn't write about them initially.  Emma is her own little sweet self most of the time.  She is eating well, playing, ripping up books with the best of them, and snuggling like only she knows how.  She is learning that Wesley isn't a toy and is enjoying the "play" time that we've all had together.

Wesley is changing :).  He's understanding a LOT more!  He's starting more and more to refuse to eat and drink.  I know this is a control thing for him, but he is SO small, that he really needs to eat and drink!  We have him on Pediasure and we're adding calories to that as well.  If he refuses it, we've begun putting him in his room (not his bed, but on the floor by himself) for a few minutes and telling him it's time for eating, and when we come back, he needs to sit and finish his drink.  He usually will finish after that!  He's also getting around better, getting himself across the room that he's in, going over to the swing and laying under it playing, or engaging another child if they're nearby. He's playing with some toys and prefers the "big" items like a baby doll stroller or a ride-on cart to play with and manipulate!  There's no question that he's never "out of sight/out of mind" because he's either engaging someone else, or they are engaging him in play of some sort... ESPECIALLY Brianna!  James likes to mess with him and so does Emma, but Brianna wants to play with him and love on him.  Aleksa also continues to have a fondness for Wesley though she doesn't quite have appropriate play down and will often be too rough (like Emma...) or put things ON TOP of him... like... pillows.  (yes, we watch her VERY closely!!)

So, there's the other two kids that I'd left out.

And now... a few things that *I* am pondering, so why not ponder them (or share your own thoughts on them...) with me? :D :D

What do you send in your kids' lunch boxes for school?

What are some simple but good dinners your family enjoys?

What are some 'routines' or organization things or... whatever... that make your life go smoother?  I post about ours as I think to do so, like our "family closet" or cooking one day each week for the entire week.  So... what are your tips and tricks, time savers and sanity savers that help you do what you do?????

Happy Day

I have a made a new best friend.  Her name is LABEL MAKER.  We spent some time together today, and my house is happy!!

In other news, I also spent $45 on COPY PAPER ALONE for our school supply list for the kids this year.  YIKES.  I'm buying the supplies a few at a time so it doesn't kill the budget, but having 7 kids in school next year is already looking expensive!  (Tho I'm not complaining about having to provide the supplies, I know the teachers don't get them otherwise, yes, including copy paper, and I know the teachers provide a lot out-of-pocket throughout the year even with this :) ).

It has been an interesting almost-72-hours-home since our weekend away!  Yesterday I woke to Kristopher being "helpful" and getting everyone out of their beds for us, and helping them get to their potties.  Unfortunately, Micah had had a blow out nasty diaper and by the time I got to the family room he was standing in the hallway to the bathroom with no pants on, the nasty diaper in the changing pail, poop all over the pail, all over Micah, ALL over the potty seat, and... all over the light switch that he was playing with.  So... a bath, new sheets, clean clothes, and we were ready to start the day!

That is just one example of the fun we've had :).  We also had a dinner which involved both major spit up and pee.  And of course the notorious spills required of our fine dining experiences we have here at the Cornish home...

Anyway, a little review of our summer-so-far, since I've been a horrible blogger this summer...

First off, we've had a HEALTHY SUMMER so far!  I am SO glad to have this time home and healthy!!!  One of the many reasons I've continued to think about homeschooling our crew in the future...

We also have had a very productive and GROWING summer!  Micah has matured SO much!  He's listening to directions, attempting to dress himself (putting on a pull up and shorts, just needs help with the pulling up part...).  All of the kids have gotten more independent in being out and about with us.  Micah, and even James a little bit, is doing great staying with us and not needing to be in a stroller when we're out at a store or mall or even just out walking in the neighborhood.  Yesterday we spent almost an hour doing different color games and activities with most of the kids, and Micah and James both stayed with us and participated.  Micah and Emma are both doing great stringing beads by themselves and Micah is doing better with matching colors, tho there's still room for improvement.

Brianna is matching all her uppercase and lowercase letters and is able to choose the picture that starts with the letter without much assistance.  I need to find an iPad app that works like the Hot Dots to test her, but that also can do randomly generated things since I do think that there may be some memorization going on as well.    Not that that's bad... just doesn't give for true learning if she's not thinking about the sounds and letters.  Brianna already knows her colors except for some reason calls Blue, Yellow pretty frequently.  She is counting objects and just generally enjoying learning and growing.  She's also accomplished pedaling and we hope to get her to actually USE the skill on her bike... but so far she prefers other things outside.

Kristopher has been doing some of the Hot Dots comprehension cards as well as beginning multiplication.  He also loves the coins game on the iPad and appears to have conquered that deficit that he was having difficulty with last year.  He's reading at bed time every night and enjoying playing the Nintendo DS (which he earned through a behavior and helping chart using our Candy Land game board... the DS was Michael's that he no longer plays on much).

I have written a lot about Aleksa but briefly, she is doing ok.  She had a rough weekend without us and continues to struggle even with our babysitter that is here at the house WITH me, and with grandparents.  We knew that our trip would set her back... but we also knew that this was not only a time to celebrate, but a needed "time away" for the two of us, and we are still glad that we took it.  Aleksa now knows that if we leave... we will come back.  And she'll have to figure that out even more in the days to come.

Let's see... James... I don't know what to say about James :).  We'll back up a bit and do a medical review, since I didn't really mention test results.  James had an EGD, an upper GI, and a motility test in the last 6 weeks or so.  All of the tests came back "normal within limits" except that his duodenum (bottom part of the stomach) has some flat areas.  Tests for Celiac I haven't gotten back yet (it was just last Wednesday that they were done with the EGD).  So... basically there's no reason for his constant reflux, but it isn't affecting his esophagus (so the Prevacid is doing its job in keeping the acidity of the reflux down...), and there's nothing "planned" at the moment to keep him from spitting up all the time.  I haven't got his next GI visit yet, but soon we'll have that and talk more about the tests and results and plans.

That said, James' behavior continues to be a strong topic of conversation around our house.  He has times of listening and times of, well, just completely NOT.  He's a 4 1/2 (almost FIVE!) year old little boy, and I remember having these same thoughts and conversations about Kristopher at that age.  However, right now we're not just dealing with a high energy level or impulsive behavior, but the seeming inability to focus at all, or to do simple tasks which require some concentration.  Last week we had James' physical and he has gained 5 1/2 pounds this year! YAY!!  He's made some big gains in other areas-- walking (tho he's still very unsteady), taking all his calories by mouth (no tube useage) holding his bottle, getting OFF the bottle, and making big social gains, such as staying with us some out in public, interacting appropriately with the other kids, following familiar routines around the house, etc...

Ok, so at the doctor's appointment behavior was brought up because several of the questions just couldn't avoid it.  "How is his find motor developing?  Does he like to color?"  "Well, he CAN color, but it generally ends in a quick version of throwing the paper and getting up.  He doesn't sit still that long to focus on it."  That among others... and we then discussed his behavior.  Or, rather, the pediatrician did.  I asked her whether she had any concerns with using Ginkgo Biloba with James to see if it has any effect on helping his ability to concentrate.  She had no concerns, tho she said it's not her specialty and suggested we see a behaviorist that can then give us "more medical options" for behavior modification meds.  I attempted to nicely decline, since I'm in no way in favor of putting my 4 1/2 year old on a psychotropic drug so he can pay attention in PreK.  Just my own feelings on that one, tho I know others have different feelings about it.  Our ped's response was "some people can handle it, some cannot.  We'll talk about a referral to a behaviorist again when you get to that point."  Hmm... not super encouraging, but James WAS bouncing off the walls during the appointment, having just entertained two 15 year old girls in the waiting room for close to an hour and was yelling, giggling, and wriggling like crazy to be the center of attention again while I was attempting to talk to the doctor.

Anyway... we're going to attempt the Ginkgo for a few of the kids, i've ordered it and looked up the dosages both of the general use of Ginkgo and the "Changing Minds" website (which DOES suggest the use of Prozac which we will NOT be doing...).

Ok, that's most of the kids :)  Lynae is doing great.  Spunky, talkative, and way too smart for her own good since she's not helping the other kids along with stuff and she's not even 2 yet...

We have cardiology visits for Lynae and Aleksa in the beginning of August, school starts August 10th for everyone except Brianna who starts the 15th, and James' birthday is August 14th!

Even though we're only 2/3 way through July, it sure seems like it is FLYING...

Sunday, July 17

We're BACK!

Michael and I had a great weekend!

A HUGE THANKS to both sets of grandparents for keeping the kids for the weekend!  Michael's parents kept the boys at our house and my parents took the girls to their house for the weekend.  Mom's words tonight were "how do you do this every day?" LOL, but it sounds like the kids AND the grandparents had a good weekend.

Michael and I spent the weekend in Orlando and went to Universal Studios parks both Friday and Sunday with a "day of rest" on Saturday and a trip to see LaNouba.  We are thankful for the gifts from our parents that allowed this weekend's "adventures" as well!

Now we're home and thankful to be back home :).  We enjoyed a chance to spend total ADULT time together, to relax and to do things that we just wouldn't have done with our entire crew in tow, like dinners out, roller coasters, and SLEEPING IN :).

I must say, this was a good length of time to be away.  Just long enough to get refreshed, have fun, spend some great time together, and by the time we were coming home, we were READY to be coming home and ready to be back in the groove with the kids.  At the same time, we were very blessed to know that all of our kids were in good hands and we didn't have to worry about anyone while we were gone!  We checked in each morning but aside from Aleksa bringing my parents in to the knowledge of her ability to be a bit sneaky... it sounds like everyone had a busy but good weekend.

THANKS AGAIN to our parents!!!  And a big I LOVE YOU to the man of my dreams who I'm so blessed to have spent the last 10 years of marriage to!!!


(And, yes, we have prepared ourselves that after a 3 1/2 day get-away, it may be another 10 years before we have that many continuous hours alone :)  ).

Thursday, July 14

Ten years to celebrate!

Today is Michael and my 10th anniversary!  Our wedding was at 2pm on July 14th.

Tonight we are thankful for grandparents willing and able to watch ALL of our kids... and we are driving over to Orlando to spend a long weekend alone.

Our four boys will stay with Mike's parents, the four girls with my parents, and we will be home on Sunday night!  Yay for family, and for time away too :D

Saturday, July 9

"I have a big one" It just has to be told...

Sometimes there's a story that happens that involves one of the kids that just HAS  to be told...  And this is one of those.

My sister and her husband are down from Philly for the weekend (to see the last shuttle launch) and we had a  family dinner at my parents' house on Thursday night.    After a nice dinner of indoor-grilled burgers and dogs and some visit time with my dad's brothers and families, we were enjoying playing some word games on ipads while the kids had found laps to sit and snuggle on.   Kristopher exited the room to use the restroom and no one thought much of it.  We continued chatting across the room, adding words to our puzzles, and talking about randomness.

Then, Kristopher called out what, though maybe slightly embarrassing, began a conversation that he will be hearing in its retelling for some time :).  Kristopher called and asked "Dad, can you come here?" and we all learned that his tummy was upset.  Ok, not the end of the world, Michael went and talked to him then came back out.  A few minutes later, he called for Daddy again.  This time he asked "WHO??" and Kristopher was quick to say "YOU, DADDY!"   So it wasn't much surprise when again, a few minutes later, we heard Kristopher call down the hallway "Daddy!" but what followed is what we hadn't expected.

"Daddy, come here!  I have a big one!"

Now, just about this time myself, my sister and her husband Jim, my brother and his wife Erin, both of my parents, and my other brother all stopped what we were doing and sat in stone cold silence, trying for all we were worth not to laugh!

Michael, however, was just coming in to his element here, and said "Ok, Kristopher" and started to entertain a conversation about the "big one" throughout the length of the house and hallway.  To that, Kristopher put Michael to shame.

"Daddy, I have a big WORD.  AIMED.  Try AIMED!"

And so, our sweet 7 year old son, with an upset tummy, was missing out on playing the word game with his adult aunts and uncles and remembered the letters so he could continue trying to come up with a word that would fit while he disappeared to take care of some personal business.

I don't know if the word AIMED fit or not, but he was right.  That's a big one :)

Friday, July 8

Language Acquisition

Let's talk about language.

Having helped with many adoptions and read up on international adoption, I know in my head that generally within the first 3-6 months most children will "lose" their first language gradually if they aren't exposed to it in their new home environment.  From 6-9 months is generally a frustrating time for a child to express language since their thinking and speech and everything is "converting" to the second language.  From 9-12 months, a child generally gets full language acquisition in their new language, of course within reason since learning is constant no matter whether adopted or moved between languages, etc.

Many parents note that their new children who don't have developmental delays are able to speak in full sentences in English as soon as 2-3 months after initial exposure, and by about 6 months appear to have full language acquisition.

Often times children with Down syndrome have no speech in their native tongue.  Some cultures don't place importance or even really conceptually believe it is possible, on teaching children with Down syndrome to speak.  Those children that are over age 4-5 that are having to acquire speech from the very beginning stages but are fully capable of learning often begin using words and phrases within the first 2-6 months and acquire decent communication, whether in full sentences or not, by around 5-6 months home.  This doesn't mean they've learned their second language, but can communicate yes and no, understand general spoken commands given to them, and express their own basic needs such as toileting, playing, being hungry, or being hurt.

I'm speaking VERY generalized, and in this, none of my own children fit in to this model.  Emma is not a child who "had no speech in her native tongue but was fully capable of learning, because she has other issues from her medical complexities.  Micah was adopted at 18 months and at 4 1/2 is acquiring some speech, use of sign, and has recently begun following more complex directions and such.

Then, we come to Wesley, who has been home just over 6 full months now, and is understanding quite a bit of what is going on around him.  He appropriately nods yes and no, and does so playfully telling us no with a big grin on his face when he wants to tease.  He understands familiar basic commands such as to take his hands out of his mouth, to stop, to wait, to drink or eat, swallow, chew.  He understands high five, to 'come here' (and he tries!), and other basic things that are within his realm of ability.  He has some vocalizations which aren't quite getting in to understandable things for the most part, but he is trying... and part of his disability is his difficulty with the muscle control in his mouth.

Lastly, we have Aleksa, and the reason for my post :).  Aleksa has also been home for 6 months and although from her social skills, her cognitive (seeming) ability in figuring out routines and her ability to adapt well to new situations, Aleksa has not developed much speech at all.

Here are some of the things she IS doing with some notes about some difficulties she may have with them:

  • waving "hi" and "bye" and with visual prompting, approximating the words (though bye is not easy for her without a strong visual reminder).  Her 'words' are all 2-syllable, therefore "hi" is "hiya" and "bye" is something with two syllables.. not always resembling 'bye'.
  • requesting use of the restroom by signaling to her body parts which expel it... it works... for now...
  • giving hugs, kisses, high fives, and handshakes to people if visually requested (or at random to strangers when we're not close enough to keep her from doing it!).
  • getting her shoes out of the shoe drawer when asked to put them on (often requiring signing along with it).  She can find her own play sandals, but church sandals she gets her own and Lynae's mixed up... they are different designs and sizes, but both pair are white...
  • She can use the restroom independently and wipe independently with visual reminders to wipe her back side well, or a little assist.
  • She can dress independently, putting her underwear on first, then shorts, shirt.  She doesn't get them on in the right orientation (inside out, backward, etc).  When asked to take her shorts off and fix them, she will often take off her shirt or vice versa.  She doesn't recognize when she hasn't gotten her clothes on correctly and doesn't focus when we explain how to lay out her clothes so she has them on correctly, or when we point out the tags in the front, etc. if she has them on backward.  She also will take off everything if she doesn't understand what is being said.  For instance, if she puts on her shorts and underwear correctly then say "great job, Aleksa!" she may sit down and take them back off. 
  • Aleksa will hold her siblings' hands when we are out places and is good with staying close by us now.  he will grin and start to stay back or walk another way, but when asked to come 'hold' (usually a hand or the side of a stroller), she will do so and stay with us.
  • She has learned (usually) to wait to eat until everyone has sat down at the table for a meal and we've prayed together.  She even folds her hands and bows her head to encourage us all to go faster, knowing that when we're done praying she can dig in :)
  • Aleksa will help pick up toys, though she often invests her pick-up efforts in to signaling others with pointing and 'grunts' to pick the toys up rather than doing much of it herself, as we see in several other realms as well.
  • Aleksa can put a nighttime pull up on and generally stays dry throughout the night.  When she is getting dressed in the morning, she hasn't figured out that the diaper goes in the diaper pail and the clothes go in the hamper.  After repeatedly telling her to put the diaper in the pail, almost every morning we have to signal to the diaper pail to get her to put the diaper in it, and open the hamper for her clothes.  She "freezes up" when she thinks she is doing something wrong, and will stand there "flipping" whatever she has (diaper, if it's when she's changing clothes, or her underwear/shorts/shirt if she's been asked to take one of those off and fix it).  
So... there's a little glimpse into our world.  I by no means think that she is just ignoring us completely, though it has been a thought.  We are having her hearing tested next month.  She appears to hear sounds, at the very least, but she doesn't appear to have picked up much language at all.  It's as if she hasn't been hearing us speak to here continuously for the last 6 months... to have learned some basic things like underwear, shorts, shirt.

She seems to come when called, and follows routines well.  I'm really at a loss as to what we're really dealing with (as far as her not gaining language goes) if it's not her hearing.  Aleksa appears to be doing very well and for lack of a better way to put it, she is "mid-high" functioning as far as her physical abilities, memory, and social aspects of life.  YES, we are having bonding difficulties, but that is unrelated to this (and slowly making strides in the right direction).  And yet... we are still struggling SO MUCH with language.

This is probably the most frustrating part of life right now for us and her.  We are signing with her all the time, and she is repeating some signs as well as using some independently.  She is very good at figuring out the "means to an end" and will sign more, please, thank you, sorry, etc... when she has needs. 

So... if you've adopted a child with Down syndrome that seems to have a potential for developing language (whether they used their first language or not), would you share?  How old was your child at adoption and how long before they began to acquire language? There are 4 types of language... receptive (understanding), expressive (speaking), body language (social/ situational), and sign language (actual signs learned).  Right now, the first two we are at about 4-5 words each.  MAYBE.  The second two, we're doing pretty well.

Wednesday, July 6

Can We Ever Go Back to Sleep?

This post is reposted with permission from my wonderful husband, Michael Cornish.  I may talk about him on here all the time, but rarely am I given the opportunity to share his heart... (originally posted as a note on his FB page earlier today).


So I go to bed tonight with Jesus' words ringing in my ear, "If anyone hears My sayings and does not keep them, I do not judge him; for I did not come to judge the world, but to save the world," (John 12:47 NASB) and thus continues a process that God is doing within my heart and mind and ultimately leads me to write this a 2 am this morning.

The Judgment Seat
Jesus, who had every right to judge mankind for their actions, said that he did not come to judge but to save.  Today I read a myriad of comments from people expressing hatred toward a person that many, if not most, believe killed her own daughter.  Will we ever know the truth? Probably not.  But even if we did, is it our place to judge? And when we do, what does that do to us?  Are we truly better than the people we judge? What is it that happens inside of me when I judge?  For me, it causes a sufficient distraction from what God has called me to do, and who he has called me to be.  It begins a root of bitterness and hatred that will destroy me from the inside out.  I am a disciple of Christ, and as such I have not been called to judge mankind, but be a part of God's mission to save it!

Friends and fellow followers of Christ, take yourself out of the judgment seat.  It is not designed for you or I and we have no business trying to put ourselves there. Channel that frustration at the gates of Hell, knock them down and bring people out.  Our battle is not against flesh and blood but against ....    Before i continue down that vein lets walk down another.

Living in Hell
Do I believe Hell is real? Yes. Do I know what hell is? Not fully.  Do I think it is a place where people should go, for any reason? Absolutely not! As he hung there, after being beaten within an inch of his life, back open and bleeding from a lashing that has literally cut to the bone, head throbbing from the long thorns that are piercing it from all directions, and struggling for breathe, my savior says, "Father, forgive them..." Jesus died so that we could get out of Hell and into God's kingdom. Jesus died so that murders could be forgiven.  Don't ever, for a moment forget that!

With this thought in mind, I realize that, if everything I believe about life and death is true, Caylee's Hell ended 3 years ago and that she is truly in a better place. Yet my thoughts still go toward what her final hours might have been like.  Let’s just say, I didn't want to dwell there.  But the truth is, we all need to dwell there more. We, people who are called by God be a part of his great kingdom right here and right now, need to pull our heads out of the sand and become aware of the Hell that is going on around us.

People are living in Hell all around us.  Children are living in Hell right now.  They are being abused and tossed away on a daily basis and the church is not rising up and rescuing them! I read an article the other day that said this "if each congregation adopted even one child, there would be no orphans in America." (Full article is linked below)

If you are angry about the Casey Anthony trial, then i urge you to channel that energy and frustration toward the Hell that people live in every day.  Do the research, get thoroughly ticked off about something that is happening in this world that you can't stand and then get involved in eradicating it.  Read about organizations like the International Justice Mission and the A21 campaign. Sink your teeth into the Invisible Children project.  Go to the Eli Project and learn about children with special needs all over the world who won't ever be accepted by their societies. Check out the children in your local foster system who need a loving family who will choose them and show them a love that they have yet to experience. 

Being a Light
"You are the light of the world. A city set on a hill cannot be hidden; nor does anyone light a lamp and put it under a basket, but on the lampstand, and it gives light to all who are in the house. Let your light shine before men in such a way that they may see your good works, and glorify your Father who is in heaven. (Matthew 5:14-16 NASB)

All Christians are called to be light in a very dark world.  That light is designed to be taken to dark places and lifted high.  So go and do that.  We are in a battle. And it is a fight to the finish.  Thankfully for us, the people who are true Christians, the battle is already won. The question is, how many will you be bringing with you? 

Here are some much tougher questions for you. Who won't make it to Glory because you didn't pull them out of darkness?  What child was sold into slavery and abused every day for their entire life because you didn't rise up and save them.  What young man is on the streets today because you said another child in your family would be too difficult and as a result they didn't get adopted by anyone?  How many would not be dying of Aids today if you had stepped in and made a difference?  These are just a few tough questions that many of us need to dwell on more.

Can We Ever Get Back to Sleep
So this is what I wake up to at 2 in the morning.  Things that weigh on my heart. Desires for a world that knows and feels God's love in such a powerful way, that it is left marked and changed. 

It's time to Wake Up!

I don't know what God has in store for you.  I don't know how difficult it will be to accomplish.  But what I do know is this, you are here to be in the saving business!. Go out and be a part of someone's rescue! Go pull people out of Hell and show them what God's love is really like. 

In Christ,
Michael Cornish


A Few Links
- Eli Project                                http://www.eliproject.org
- A21 Campaign                           http://www.thea21campaign.org
- International Justice Mission        http://www.ijm.org
- Invisible Children                        http://www.invisiblechildren.com
- http://orphanjusticecenter.com/2011/06/11/is-the-church-ready-for-the-abortion-law-to-change/

Saturday, July 2

Organizing Chaos

I've been trying to organize some of the chaos around here lately...

I've "taken apart" and reorganized, and sorted, and TRASHED, a bunch of stuff in the 'cubby' bins inside our doorway which holds a combination of stuff cleared off the dining room table, things that we need handy for school/church/car trips, things that belong to the children but aren't in their direct possession ALL the time (such as the leapster and games), all of our mail which is saved (like bills) and... the TONS of stuff that comes home in school backpacks!

Those bins were organized last weekend, just in time for Michael's birthday party, and amazingly enough... they are still looking good!

Today I hit three bins that were 'junk' bins from places like the kitchen bar.  They are now ALL EMPTY, which is a huge accomplishment around here :).  After that, we moved on to the garage.  Still a LOT of work to do there, but we did at least organize things better, fill a few trash cans, and empty a few bins of "stuff" which had been accumulated when we've cleaned out the cars in the past few months.  :)  We also moved our van bench seat (the 4th one, which has 4 seats and we removed for use as storage for wheelchairs/strollers) out to our porch.  That way it isn't in the super humid and hot garage all summer, AND, it is useful.  No worries, we have made sure it's not a tip risk :).  And we watch the littler kids careful when they're out there because the swing is up right now too.

Now on to the guest room/storage.  I'm pretty much always trying to rearrange things in our home to make things cleaner, more organized, more efficient, and to better meet the needs of our family.  We are trying to find a way to make a 'space' for Kris to set up his Lego and PlayMobile toys where the other kids cannot destroy them :).  He has the 'loft' in the girls' room, but now that Lynae is in there, he can't access it during nap time.  He's used the dining room table for a few projects, but even there it's out in the middle of things and the other kids get to it.  Looks like the guest/storage room needs a flat table... (which we can store diapers under!).


We also have started a new rewards chart for the three "big kids" (Kristopher, Brianna, and Aleksa) for the time being.  We took something we already own (aka-- FREE--), the Candy Land game.  We changed its purpose... to being a rewards chart.  Each of the three kids has a little candyland guy to bring around the board.  Each time they get to a "surprise" on the board (like a candy cane or ginger bread man picture), they earn a reward.  The rewards are things that we also already have, or that are free to us... but that are still worth "working toward" for the kids.

Kristopher can earn 'steps' by doing chores around the house.  Anything from taking sheets off the kids' beds when I'm getting ready to do laundry, to putting a new bag in the trash can, to turning over the laundry machine.  He's been very helpful the last few days :)  In fact, he's earned the first surprise, BUT, I told him in advance that the first one was going to be me TELLING him what the second surprise is.  Since the second one is a BIG one.  :)

Kris can also LOSE steps when he does something he knows he shouldn't, like kicking at his brother!  So, he is working on good behavior AND being helpful.  And the rewards don't hurt either!

For Brianna and Aleksa, they are doing more basic chores like emptying the dryer or helping a sibling, or by listening when told to do something, like putting their shoes on to leave or putting something away.  We've decided not to use "backward" steps for the girls right now.  I haven't figured out what the girls' first prize will be, but we may do a "family" prize when the girls both reach the first surprise and all do a family movie night or have ice cream cones or something fun.  Aleksa doesn't understand the game AT ALL, but I think Brianna knows she's doing things to move her piece and that the 'special' board places are good :)  She knows what SURPRISE means!

We've found that Kristopher does great at working toward a goal, and having predictable consequences for his actions.  It's a HUGE incentive for him not to be nasty to siblings, etc... because he knows he will be working backward on his 'chart'.  Kristopher's love language is definitely "receiving gifts" whereas Brianna's is quality time, and i think Aleksa's is physical touch.

We chose to only do this with the three 'biggest' kids right now because the other ones wouldn't "get" it yet.  That's part of why we're considering "family" prizes when everyone crosses a mark since that allows the other kids to get in on the fun :).

And if you're wondering, I'd say that right now, the other kids' love languages are:
Emma: Words of Affirmation and a second close one is physical touch... as long as it's from ME or MIKE!
Wesley: Physical touch!!
James: Physical touch!
Micah: Physical touch! with a close second of quality time, I think
Lynae: Quality time with a close second of receiving gifts.

What are some fun organizing tips you have, or inexpensive summer busters?  What about your kids?  What are their love languages?  (Not sure?  Take this quiz... or have them... to find out!  http://www.5lovelanguages.com/assessments/personal-profiles/children/)

Friday, July 1

Today I

Climbed on my roof.  I realized that... I've never been on the roof :)   Accomplishment for the month, right?  And its only the first... now I get 30 days off, right??

Methinks that fax machines

Should just be replaced by scanners where you can preview a pdf, count the pages, and make sure its right side up (front rather than back side scanned...), and not have to restart it all if a page jams or it grabs three together.

Hour number two trying to send a 120 page document via facsimile...

I miss my digital fax number that worked through email! Lol