Several people have commented or FB messaged/posted to me that you could help if I have CP questions. Well, here's my first round :) Since Wesley is still very new to us and none of our other kids have similar difficulties to him in some areas, I need your help :)
The first area is bathing. He has spastic CP with all four limbs affected, and when he is either startled, excited or upset he is VERY stiff. For the last few weeks we've been bathing him practically flat in the tub, supporting his head and going quickly. For all of our other kids, though, bath time is a FUN time! We want him to enjoy playing and possibly be in the tub WITH them as well since, yes, we let the kids bathe together. Right now that's not a possibility for my back or his.
He was getting red marks on his back from the floor of the tub, and we bought an infant foam pad made for bathing newborns to help with that. It doesn't reach from his bottom/hips to his head, so we still have to hold up his head, but it is at least something. We are looking to get something immediately and likely won't go through insurance for it simply because of the length of time it would take for them to get him approved and get it for us. So, we're looking for something that's reasonably within our budget.
Most importantly, we need something so that bath time can be a fun time for him and not a stressful time for us! I want to also mention that in addition to his spasticity in his legs which causes him to fully extend his entire body, he also cannot straighten his legs when in a seated position. So some of the chairs which support the entire leg but are at an angle (such as a seated type position but with the legs extended) won't work well for him...
One that we saw is this: http://www.especialneeds.com/childrens-chaise-child-seat.html It's like a tumble form almost and looks like it would be easy enough to use in a kiddie pool in the summer time or even in the playroom as just another seating option for him. The biggest thing I dislike is that it looks very bulky to store.
Another that we looked at is on the same site http://www.especialneeds.com/bath-toileting-diapers-bathing-bath-shower-chairs-otter-bathing-system.html and is called an "otter" bath chair. This looks more compact, less comfortable, but likely able to store better and with lots of kids and the desire to occasionally take overnight trips places throughout the year, I'd like that option.
Here is a third that was suggested, the Dolphin chair: http://www.adaptivemall.com/wedobach2.html
So my question for you all would be whether you have tried these chairs (or ones similar to them) and do you recommend them or not. Also, if you have a bath chair that you like, what kind is it? Would you please leave me a link so I can check it out as well? We are looking for something inexpensive for this initial purchase and in the future may need to do something 'more permanent' or more versatile through insurance, so both the super-inexpensive variety and the ones you really LIKE would be great to know!
Ok, second question is what your kids without verbal language are using to communicate. We use sign language with our 5 kids with Ds, and will continue to sign to Wesley as well as with our other kids, but since we don't know the extent of his vision difficulties yet... and he doesn't have the ability to form or even approximate most signs to be able to sign back to us, what are your suggestions for communication? We are looking at a picture system to begin with because that takes away the language issue as well (Russian vs. English). We have NO IDEA what his cognitive abilities are! So he may take off with something or we may find that it's too difficult an idea for him to grasp right now. BUT-- we will start off with the guess that he is not cognitively affected except for an obvious orphanage delay and we'll go from there...
On a side note, we are also beginning to use a picture-based system with Aleksa, even though she's really understanding the language, because she is still only approximating very few words (added "lala" on this week... which is her word for Lynae!). We're going to start using it more even with Brianna, since she's having so many more complex thoughts that she wants to share but she just can't find the words to get them out there to tell us!
So... what picture-based communication have you used, or if you have another mode of communication, please share that! We're not looking at purchasing equipment right now, but we do have a small 3x3 communication device that we can personalize with our own words and such. We also have access to an i-pad that Michael has for work but that is very limited access (unless, of course we win one LOL-- don't forget to enter the Malone family's iPad give away!!). Otherwise we're thinking about just a notebook with printed out pages with what we are having the kids choose from. It is a start until we figure out where we want to go with it. I have a disc of pictures to use with it and many real-life photos to use as well.
Ok, that's all for now... thanks for any ideas, suggestions, and I'll certainly be back for more as we have our doctor's appointments-- especially after the orthopedic doctor when we can know what positioning is 'safe' for him with his hips however they are. :)
The Cornish Family... Chasing God's calling...
Sunday, January 16, 2011
Saturday, January 15, 2011
Potty talk
I'm one PROUD momma today!
I have one BIG girl that is staying dry all day and most nights! She's only wet once in the daytime this week.. YAY ALEKSA! We're not that far from getting back into JUST Underwear! (but while we're in the 2-dr's apts/day with 4-6 kids in tow... she'll hang in a pullup for a little longer...)
And I have one BIG girl that is using the toilet and is initiating it as well! She's been in underwear a while now with an accident here and there, but this week has been GREAT! YAY BRIANNA!
And... one LITTLE girl that decided this week that it's her turn to go potty with the big kids! So, out came the tiny toilet that was waiting for her, and she has had a BM in the toilet THREE times this week and has peed in the toilet twice! WOW! YAY LYNAE!
There are SEVEN, yes, SEVEN kids in diapers right now at our house, so I am VERY glad for these potty milestones! On another happy note, James, Micah, and Emma all usually have their BMs in the toilet even though they are often wet between, and they all will use the toilet almost every time they're put there every day.
We haven't done a formal 'schedule training' for our kids, but we do take them all at specific times of the day. Immediately after getting up, before or after lunch (depending on how the day is going!), after nap, before dinner, and before bed. Sometimes one time will slide a bit, but that's generally when they all go potty. We have 4 tiny potty seats in the bathroom plus the throne which E and A share. Wesley's not using the toilet at all right now because he cannot sit and he freaks when the idea's brought up. Until we find out about the severity of his dislocated hips we won't push the issue.
So, our good news for the weekend :)
I have one BIG girl that is staying dry all day and most nights! She's only wet once in the daytime this week.. YAY ALEKSA! We're not that far from getting back into JUST Underwear! (but while we're in the 2-dr's apts/day with 4-6 kids in tow... she'll hang in a pullup for a little longer...)
And I have one BIG girl that is using the toilet and is initiating it as well! She's been in underwear a while now with an accident here and there, but this week has been GREAT! YAY BRIANNA!
And... one LITTLE girl that decided this week that it's her turn to go potty with the big kids! So, out came the tiny toilet that was waiting for her, and she has had a BM in the toilet THREE times this week and has peed in the toilet twice! WOW! YAY LYNAE!
There are SEVEN, yes, SEVEN kids in diapers right now at our house, so I am VERY glad for these potty milestones! On another happy note, James, Micah, and Emma all usually have their BMs in the toilet even though they are often wet between, and they all will use the toilet almost every time they're put there every day.
We haven't done a formal 'schedule training' for our kids, but we do take them all at specific times of the day. Immediately after getting up, before or after lunch (depending on how the day is going!), after nap, before dinner, and before bed. Sometimes one time will slide a bit, but that's generally when they all go potty. We have 4 tiny potty seats in the bathroom plus the throne which E and A share. Wesley's not using the toilet at all right now because he cannot sit and he freaks when the idea's brought up. Until we find out about the severity of his dislocated hips we won't push the issue.
So, our good news for the weekend :)
Keeping him in the loop
This blog has always been "our family's" way of communicating with friends and family, but... it has always been me that writes, and occasionally Michael has read. Since Michael works at the church where several others follow our blog or my FB (which posts my blog on it), there were often people saying "Is Brianna feeling better?" or "How did James' doctor's appointment go?" The best one... "I hear Meredith is sick today and stressed out... you guys need anything?" when he had no idea anything was going on for any of them :)
And so... I found this very nice little thing that we now use so that Michael gets the blog posts sent to him via email (which he checks all day long) and so that he doesn't get in trouble when he gets home (LOL!).
In the settings area of Blogger there is a tab that says Email and Mobile. The first thing says you can add up to 10 email addresses for the blog to be automatically sent to. It won't send videos but I do believe it sends photos. It's great!! Now he gets a quick email each time I post to the blog and he knows what's up at home without me having to call him and say "by the way, I posted stuff on my blog". Generally, we talk about things as well! But... when he's working and I'm writing... well, this works :)
An added benefit? I also added him so that he gets emails of all of the medical updates on all of the kids. We chat in person on those, of course, but then he also gets the 'quick version' with the 4-5 lines of info about what specifically was done/came out of the appointment.
If you have someone special to you that sometimes feels like they're out of the loop when you blog and they can't check it during the day, there's just one little way you can help them to stay up to date even when they can't check in.
** Side note: No, I'm not adding more people to get those emails of mine, but there are blog reader applications and programs which can do similar things as well. I suggest google reader! **
An added benefit? I also added him so that he gets emails of all of the medical updates on all of the kids. We chat in person on those, of course, but then he also gets the 'quick version' with the 4-5 lines of info about what specifically was done/came out of the appointment.
If you have someone special to you that sometimes feels like they're out of the loop when you blog and they can't check it during the day, there's just one little way you can help them to stay up to date even when they can't check in.
** Side note: No, I'm not adding more people to get those emails of mine, but there are blog reader applications and programs which can do similar things as well. I suggest google reader! **
No excuses
I know I have NO excuses for not blogging, and you wouldn't believe me anyway if I said I was so busy I couldn't stop to write it all out (again-- I DID do their medical blogs ;) ).
So... here's a rundown of Thursday and Friday:
Thursday started with Lynae's 15 (she's 16 mos) month checkup. She is GROWING well now that we started Pediasure in October. She is 18.5lbs and is on the same growth curve as previous visits so that is good :)
I brought the doctor Brianna's bloodwork results and she compared the two (Lynae's and Brianna's). They are surprisingly similar. I told her the things Endo had shared with me about Brianna's and she expressed the same concerns. She ordered the same bloodwork with some added things because of the liver functions being off on Lynae's and didn't repeat the thyroid panel since Lynae's was fine before. She also wanted to do an echo on Lynae since she heard a slight murmur. It's likely a functional murmur not a structural murmur and one of the issues Lynae has would cause it to be louder. So we'll do an echo soon (scheduled for Tuesday but we can't make that appointment...).
From there (after 2 hours of being there...) we ran through McDonald's and picked up chicken nuggets, ran by the house and met up with Mike's mom and dropped Lynae off and scarfed down lunch. Then Aleksa and Wesley and I jumped back in the car and drove to the neurologist.
I had gotten a call Wed to go early by 30 min to our appointment. So we arrive at 1232 after having a hard time finding it. Then we sat there until TWO PM! When we got in there, said our "hello's" and the basic "adopted from Ukraine" spiel, then I got out my notebook to tell her the specifics that I was told in UA. And... her cell phone rang. She said it's the hospital, she needed to take the call. For 10 minutes. She hung up and I again said "he was born at 30 weeks and was the second pregnancy of his mother" and her phone rang again! She answered saying "I promise, last time!" and it was... and it was a much faster call... but it was now 2:15 and we were starting the initial appointment!
Short version, we're going to do a sedated MRI, a sleep deprived EEG, and some picture that she wants from the opthalmologist (which she wrote me a script note for). I was home by 3:00 and back out the door by 3:15!
Mike's mom had been at the house when Mike brought the kids home from school, so she had 6 at home and I dropped off Aleksa and Wesley to her and picked up Lynae and Brianna to go redo their bloodwork. Figuring it would take less than an hour I was ok leaving A and W (isn't that a funny initial combo?) and we headed to the lab. We got there at 3:32. Apparently it closes at 3:30. So we went to the pharmacy instead.
And at the pharmacy we were met with that great realization that it is, again, the beginning of the deductible year and we dished out over $400 for just 3 of the boys' daily medications. The other 2 won't be refilled for another week or two.
Anyway, home we went, reheated leftovers (our previous family life group from church has provided some meals for us which we are SO GRATEFUL FOR!!!) and had supper. By the time Michael made it home (late, there was an issue at work), we did teeth, meds, and off to bed for the kids!
Friday... we got 4 kids off to school then I took 4 kids to the lab. Brianna and Lynae had their blood draws then I took Brianna to school. She was REALLY happy about going to school which is always good!
From there I took the other 3 kids to WalMart for a few things including groceries.
Stupid act of the week for me: I hurt my wrist... driving. Seriously, I hadn't driven for almost 2 months straight and then we bought this new van almost immediately when I got home and it has stiff steering. So driving it how I always did... with my left hand... hasn't paid off! I bought a support brace to wear at least while I'm driving for a little while. It HURTS! LOL I wore it yesterday and just used a loose wrap at night for it and today it's not nearly as painful. I'll wear it for at least a little while, tho, until it's feeling better!
We came home for lunch and naps then back to the school to pick up the kids. In the afternoon the kids played, I attempted to catch up on things around the house and played with them some, then a friend from church brought supper. We ate, and EVERYONE that eats solids ate it! WOW! Even miss PICKY Brianna! :) It was a delicious chicken casserole! Then meds, baths, teeth... bed... and... MIKE AND I WENT OUT!
My parents came over and sat with the kids for 2 hours so Mike and I could just get out a little bit without kids and without folding laundry as we talked :). It was a nice little get-away but of course we were both so tired that we mostly just drove around town then went to Starbucks for some hot chocolate and Target for a few things Mike wanted to pick up. Then back home, and we had some pie (our friends brought it with dinner but we didn't have it with supper) with my parents before they left.
WHEW. A whirlwind of a week!
As far as testing and results for the girls, we were thinking we'd hear by Tuesday but with Monday being a holiday, it may be Wednesday before we get the results. We are praying that they are "just a fluke" and that this round is completely NORMAL results!!
We'll schedule Wesley's things after Tuesday since everywhere is closed until then. They're no 'rush' so they'll happen over the next month before our neuro follow up in a month.
So... here's a rundown of Thursday and Friday:
Thursday started with Lynae's 15 (she's 16 mos) month checkup. She is GROWING well now that we started Pediasure in October. She is 18.5lbs and is on the same growth curve as previous visits so that is good :)
I brought the doctor Brianna's bloodwork results and she compared the two (Lynae's and Brianna's). They are surprisingly similar. I told her the things Endo had shared with me about Brianna's and she expressed the same concerns. She ordered the same bloodwork with some added things because of the liver functions being off on Lynae's and didn't repeat the thyroid panel since Lynae's was fine before. She also wanted to do an echo on Lynae since she heard a slight murmur. It's likely a functional murmur not a structural murmur and one of the issues Lynae has would cause it to be louder. So we'll do an echo soon (scheduled for Tuesday but we can't make that appointment...).
From there (after 2 hours of being there...) we ran through McDonald's and picked up chicken nuggets, ran by the house and met up with Mike's mom and dropped Lynae off and scarfed down lunch. Then Aleksa and Wesley and I jumped back in the car and drove to the neurologist.
I had gotten a call Wed to go early by 30 min to our appointment. So we arrive at 1232 after having a hard time finding it. Then we sat there until TWO PM! When we got in there, said our "hello's" and the basic "adopted from Ukraine" spiel, then I got out my notebook to tell her the specifics that I was told in UA. And... her cell phone rang. She said it's the hospital, she needed to take the call. For 10 minutes. She hung up and I again said "he was born at 30 weeks and was the second pregnancy of his mother" and her phone rang again! She answered saying "I promise, last time!" and it was... and it was a much faster call... but it was now 2:15 and we were starting the initial appointment!
Short version, we're going to do a sedated MRI, a sleep deprived EEG, and some picture that she wants from the opthalmologist (which she wrote me a script note for). I was home by 3:00 and back out the door by 3:15!
Mike's mom had been at the house when Mike brought the kids home from school, so she had 6 at home and I dropped off Aleksa and Wesley to her and picked up Lynae and Brianna to go redo their bloodwork. Figuring it would take less than an hour I was ok leaving A and W (isn't that a funny initial combo?) and we headed to the lab. We got there at 3:32. Apparently it closes at 3:30. So we went to the pharmacy instead.
And at the pharmacy we were met with that great realization that it is, again, the beginning of the deductible year and we dished out over $400 for just 3 of the boys' daily medications. The other 2 won't be refilled for another week or two.
Anyway, home we went, reheated leftovers (our previous family life group from church has provided some meals for us which we are SO GRATEFUL FOR!!!) and had supper. By the time Michael made it home (late, there was an issue at work), we did teeth, meds, and off to bed for the kids!
Friday... we got 4 kids off to school then I took 4 kids to the lab. Brianna and Lynae had their blood draws then I took Brianna to school. She was REALLY happy about going to school which is always good!
From there I took the other 3 kids to WalMart for a few things including groceries.
Stupid act of the week for me: I hurt my wrist... driving. Seriously, I hadn't driven for almost 2 months straight and then we bought this new van almost immediately when I got home and it has stiff steering. So driving it how I always did... with my left hand... hasn't paid off! I bought a support brace to wear at least while I'm driving for a little while. It HURTS! LOL I wore it yesterday and just used a loose wrap at night for it and today it's not nearly as painful. I'll wear it for at least a little while, tho, until it's feeling better!
We came home for lunch and naps then back to the school to pick up the kids. In the afternoon the kids played, I attempted to catch up on things around the house and played with them some, then a friend from church brought supper. We ate, and EVERYONE that eats solids ate it! WOW! Even miss PICKY Brianna! :) It was a delicious chicken casserole! Then meds, baths, teeth... bed... and... MIKE AND I WENT OUT!
My parents came over and sat with the kids for 2 hours so Mike and I could just get out a little bit without kids and without folding laundry as we talked :). It was a nice little get-away but of course we were both so tired that we mostly just drove around town then went to Starbucks for some hot chocolate and Target for a few things Mike wanted to pick up. Then back home, and we had some pie (our friends brought it with dinner but we didn't have it with supper) with my parents before they left.
WHEW. A whirlwind of a week!
As far as testing and results for the girls, we were thinking we'd hear by Tuesday but with Monday being a holiday, it may be Wednesday before we get the results. We are praying that they are "just a fluke" and that this round is completely NORMAL results!!
We'll schedule Wesley's things after Tuesday since everywhere is closed until then. They're no 'rush' so they'll happen over the next month before our neuro follow up in a month.
Wednesday, January 12, 2011
Oh yeah...
And the neurologist office called today and our appointment for Wesley IS tomorrow LOL. So I'm hoping for ALL KINDS of info tomorrow!
Another day, more not-so-good news...
Yesterday I posted about Lynae's liver function tests being abnormal and her being anemic.
Today we went to the Endocrinologist with Brianna (we, being 4 kids and myself making a sweet little (well behaved!) parade through there...) and I was met by some more surprises. Those of you with kids with disabilities know these kind of surprises because what started out being a routine visit turns into the beginning of something else. And you only ever think you'll get "news" about the subject-at-hand.
Without typing 10 pages worth of details, the gist of the conversations went like this:
"So Brianna's being followed by Hematology (blood doctor), right?"
"Um... NO, why??"
And then some explanations about how her bloodwork... drawn in August but "oops not looked at" until our appointment showed not only her TSH (thyroid hormone) being high (which we were expecting and is why she was being monitored), but... she also is anemic... Not just "anemic take some iron supplements" (TONS of people are, and I have been several times in my life as well), but anemic in a sense of possibly something more going on because of the type of cells that something something something and we should have been seeing hematology. A bunch of numbers in her blood work are all low and icky (and a few high).
Tomorrow we go to the pediatrician to follow up for Lynae, and I asked for a copy of Brianna's blood work to take with me as well. Being that both sisters have anemia, we will need to look into the type of anemia that Lynae has as well to figure out whether we're dealing with the same thing in both girls. Plus figure out what's up with Lynae's liver (which could be related)
It could be nothing. Or it could be something. Now we have the fun job of finding out.
Faith is trusting in the unseen. Faith in the 'easy' times is easy. True faith shows when the hard times come and the trust doesn't wane or fade.
We trust. Faith doesn't stop when things don't look as pretty. And it doesn't stop when it's our "healthy" kid that's affected. And it doesn't stop when it's our "biological" kids that are affected. Faith is faith. OUR KIDS are OUR KIDS! ALL of them! Either there IS a God, and He is Good! or there isn't. And I believe that there is!! He is good. ALL the time
Today we went to the Endocrinologist with Brianna (we, being 4 kids and myself making a sweet little (well behaved!) parade through there...) and I was met by some more surprises. Those of you with kids with disabilities know these kind of surprises because what started out being a routine visit turns into the beginning of something else. And you only ever think you'll get "news" about the subject-at-hand.
Without typing 10 pages worth of details, the gist of the conversations went like this:
"So Brianna's being followed by Hematology (blood doctor), right?"
"Um... NO, why??"
And then some explanations about how her bloodwork... drawn in August but "oops not looked at" until our appointment showed not only her TSH (thyroid hormone) being high (which we were expecting and is why she was being monitored), but... she also is anemic... Not just "anemic take some iron supplements" (TONS of people are, and I have been several times in my life as well), but anemic in a sense of possibly something more going on because of the type of cells that something something something and we should have been seeing hematology. A bunch of numbers in her blood work are all low and icky (and a few high).
Tomorrow we go to the pediatrician to follow up for Lynae, and I asked for a copy of Brianna's blood work to take with me as well. Being that both sisters have anemia, we will need to look into the type of anemia that Lynae has as well to figure out whether we're dealing with the same thing in both girls. Plus figure out what's up with Lynae's liver (which could be related)
It could be nothing. Or it could be something. Now we have the fun job of finding out.
Faith is trusting in the unseen. Faith in the 'easy' times is easy. True faith shows when the hard times come and the trust doesn't wane or fade.
We trust. Faith doesn't stop when things don't look as pretty. And it doesn't stop when it's our "healthy" kid that's affected. And it doesn't stop when it's our "biological" kids that are affected. Faith is faith. OUR KIDS are OUR KIDS! ALL of them! Either there IS a God, and He is Good! or there isn't. And I believe that there is!! He is good. ALL the time
Do you see what I see?
This summer, soon after our commitment to Wesley's adoption, my friend Lyndi traveled to Ukraine to complete her adoption of her son, Freddie, and visited Wesley at the orphanage. The news she sent me back sent us for a bit of a ride... things we weren't expecting.
With international adoption you 'expect the unexpected' but still, it takes time to process it. We were told that among other things, Wesley was blind. In Lyndi's 5 minute visit with him she realized he could at least see a little, but had no idea what his vision loss really entailed.
We've now been visiting with him since early November and I saw him once in September also. I've had custody of him for over 3 weeks and been home almost 2. We still don't have a very good grasp on what his vision is like.
When I try to figure it out... he always proves me wrong. In fact, I thought I had a pretty good grasp of things. He saw WELL (or fairly well anyway) up to about 12" away from his face. Going out 1-3 feet from his face he could still see some, but not details (such as whether I was holding food to feed him or just reaching for him). Anything more than about 3 feet he seemed to only 'follow' moving objects and if a voice was associated with them then he would recognize that that fuzzy creature was in fact mom.
That's what I thought.
But Monday I grabbed some dry cereal to eat in the car so I could take the kids to school and then go on to a host of other errands. Wesley sits on the front bench in the middle seat in our van. And wouldn't you know... he got ANGRY when I started munching on cereal!
Now, he IS about 3' away from the dashboard in that position (maybe even a little closer) but, I really didn't expect him to be able to tell that I was eating cereal! Of course he'd already eaten breakfast, but that doesn't stop a former orphan from wanting everything that someone else has, especially if it's food :). Ok, so he could have smelled it, could have heard it... could have used other senses to know that I had some cereal. But what if... he SAW it? How awesome would THAT be???
Waiting for our referral to opthalmology to go through so we can begin to solve the puzzle with his vision.
Tuesday, January 11, 2011
My nose
I bought a 4-pk of Ghirardelli (sp?) chocolate 'mugs' filled with goodies for Mike to give away at Christmas to a few people. We had one left. It's after Christmas... it was calling my name!
So, I unwrapped it and heated some milk in the mug. I popped a peppermint in my mouth from the container then realized it was a HARD peppermint, not a soft one. So, in all my brilliance, I decided I'd have PEPPERMINT hot Ghirardelli chocolate... YUM.
And I spit the peppermint out into the cup of hot milk.
And it splashed right back up in my face and felt like someone had BIT my nose! OW! LOL
So... you all were close, but no cigar. Except for Chris, because after his comment, he probably deserves the cigar :)
Blessings, and goodnight... tired momma is off to bed (and yes, my nose feels better!)
So, I unwrapped it and heated some milk in the mug. I popped a peppermint in my mouth from the container then realized it was a HARD peppermint, not a soft one. So, in all my brilliance, I decided I'd have PEPPERMINT hot Ghirardelli chocolate... YUM.
And I spit the peppermint out into the cup of hot milk.
And it splashed right back up in my face and felt like someone had BIT my nose! OW! LOL
So... you all were close, but no cigar. Except for Chris, because after his comment, he probably deserves the cigar :)
Blessings, and goodnight... tired momma is off to bed (and yes, my nose feels better!)
The results are in...
I'll start with the best news first!
Aleksa's C-spine x-ray (looking for abnormalities in spacing of the neck vertebrae that people w/ Ds are at risk for) looks FINE!
Aleksa's bloodwork is also fine!
And of course the echo tech had told us that she didn't see any PDA or ASD's while we were there, so it sounds like she's clear on all fronts :)
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Wesley's Chest x-ray was clear and no fluid!
Wesley's bloodwork was "up and down but nothing grossly abnormal". I'll take that as good :)
His abdominal x-ray showed "moderate amounts of backed-up stool" which we expected (and have already begun to treat).
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Lynae's bloodwork looked "mostly" ok, except...
Lynae is slightly anemic. (We'll start her on some Iron)
Lynae's liver function panel showed "slightly elevated" results. She told me the numbers, and depending on what "slightly" means, I guess that's true. They are significantly more than the 'general' number that's given as normal.
So what does that mean? Hopefully, it's a fluke. We're praying that it is the case. There were two tests run and both were elevated though, so it's likely not just a fluke. It's possible that it was situational... she had just gotten sick or just gotten better (this result is actually from OCTOBER, but just got sent to the Dr since we did the "second half" of this bloodwork with the new kids this week. I'm GLAD I didn't get that news in October tho!).
As far as what to do from here, Lynae has a well visit already scheduled for Thursday for her 15 month checkup. We'll talk more then, but our pediatrician suggested a repeat blood test and an ultrasound of the liver as well as a referral to GI.
There's all sorts of "what this could mean" and we are ok just going with what it does mean for now... which is that we need to do a little more investigating.
The doctor commented that she had to check to make sure she had the right child's paperwork in front of her because it wasn't the Cornish kid that she expected to see unusual reports come back on. It was, though... and we'll see where we need to go from here!
Thank you for praying with us for Lynae!
Aleksa's C-spine x-ray (looking for abnormalities in spacing of the neck vertebrae that people w/ Ds are at risk for) looks FINE!
Aleksa's bloodwork is also fine!
And of course the echo tech had told us that she didn't see any PDA or ASD's while we were there, so it sounds like she's clear on all fronts :)
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Wesley's Chest x-ray was clear and no fluid!
Wesley's bloodwork was "up and down but nothing grossly abnormal". I'll take that as good :)
His abdominal x-ray showed "moderate amounts of backed-up stool" which we expected (and have already begun to treat).
----------------------------------------------------------------------------------------------------
Lynae's bloodwork looked "mostly" ok, except...
Lynae is slightly anemic. (We'll start her on some Iron)
Lynae's liver function panel showed "slightly elevated" results. She told me the numbers, and depending on what "slightly" means, I guess that's true. They are significantly more than the 'general' number that's given as normal.
So what does that mean? Hopefully, it's a fluke. We're praying that it is the case. There were two tests run and both were elevated though, so it's likely not just a fluke. It's possible that it was situational... she had just gotten sick or just gotten better (this result is actually from OCTOBER, but just got sent to the Dr since we did the "second half" of this bloodwork with the new kids this week. I'm GLAD I didn't get that news in October tho!).
As far as what to do from here, Lynae has a well visit already scheduled for Thursday for her 15 month checkup. We'll talk more then, but our pediatrician suggested a repeat blood test and an ultrasound of the liver as well as a referral to GI.
There's all sorts of "what this could mean" and we are ok just going with what it does mean for now... which is that we need to do a little more investigating.
The doctor commented that she had to check to make sure she had the right child's paperwork in front of her because it wasn't the Cornish kid that she expected to see unusual reports come back on. It was, though... and we'll see where we need to go from here!
Thank you for praying with us for Lynae!
The Malone Family
Isn't he a cute little baby?? His name will be Ethan soon, and he's just adorable! Wearing a 12 months sweatshirt and a pair of 12 months overalls in that photo (taken when I had the joy of meeting him in September), he weighed about 15 or 16 pounds at that time I would guess. So petite and tiny just like any baby should be... right? Except... that Ethan is SIX YEARS OLD.Ethan has Down syndrome and an associated issue which caused him to need a colostomy. That means that instead of digesting his food, it almost all 'runs out' of the hole in his side where he has bowel movements instead of going through his entire digestive system. People can live with this, but obviously Ethan isn't getting what he REALLY needs to be in order to have enough nutrients to learn and grow!
He is so tiny and needs surgery as well as a LOT of love and care! The Malone family is up for the challenge!
Not only are the Malones living out James 1:27 (to care for the orphans!) but Chris is a full time music minister at his church, and his beautiful wife, Mary, is a full time mom to their kids. I can speak from experience in saying that it isn't exactly an easy thing to manage a large family on a single ministry income :). Then, to do an international adoption that you know God has called you to... that takes another level of faith! And THEY HAVE IT.
Now, they need the funds. The Malones are doing a give-away on their blog of... an IPAD! Yep, one of those coveted new toys which is not only great for on the go work, but also for special needs kids! Michael has one for work and was able to bring it to Ukraine with us. We used it constantly as we were out and about, and Wesley quickly figured out that even he could 'draw' on it with his fingers on one of the apps.
Eventually, we hope to get one of these for the kids for communication and learning! Maybe we'll win it ;)
But right now I wanted to not only tell you all about the Malones and ask for prayer for their journey, but to share this opportunity to donate (they need it!) and to have the added benefit of the opportunity to be able to be entered to win this IPAD (you know you want it!) at the same time!
The Malones have an appointment this month at the SDA! HURRY!! Their give-away closes on January 22nd (a great day to be born *ahem* and I don't mind you donating whatever you planned on buying a birthday gift for me with to their adoption! LOL). A winner will be chosen on January 23rd.
You can view the Malone family give-away at http://themalonefamily.us/?p=2548
ENTER NOW! (This link should say "Ukraine Ministries of Oklahoma" when it links to paypal, and all donations are tax deductible)
Blackout
Ok, so this was 2 nights ago, but I have to write about it simply so that I remember it. I don't think I have laughed so hard, looking back at an event, in quite some time!
On Sunday night when we got back from Orlando and had dinner, we got the kids ready for bed, medicines administered, teeth brushed... and myself and 6 of the kids had just gone into the hallway where their bedrooms are. When the power started flashing I started looking at where all the kids were. It was weird... it flashed on and off about 4 times for about 1 second each on/off then went off completely. So my quick headcount had Aleksa, Micah, James, Lynae, Brianna, and I was holding Wesley. Kristopher was just a few feet behind me.
It was almost 7pm, and it was SO DARK I couldn't see my hand in front of my face. Not just because my eyes hadn't adjusted, but because there seemed to be no moonlight and it was PITCH black!
I grabbed up Lynae, knowing she would probably be the first to freak out and hoping that everyone else wouldn't follow suit. Then, I quickly and calmly said "Ok, lights out, let's get in our beds" and set one of the kids down then reached down to pick James up and put him in his bed. He wasn't very cooperative about it (tho he couldn't see to cooperate, I guess) and I zipped up his crib tent. Brianna was wimpering and I tried to get her to go sit on Micah's toddler bed (YAY, he's slept in it 3 nights and aside from falling out a few times and me finding him on the floor, he's doing great!). She didn't want to. Then, I found the next little fuzzy haired child and said "Micah, climb up on your bed." When he didn't go, I took his arm and went to help him along on his way. He let out a little exasperated "I don't want to" which sounded more like "AHILINGBAIL" and I realized with a chuckle that it wasn't Micah! Nope, it was JAMES.
So... I put the other child in my arms down (now everyone was calm thankfully, tho it was still pitch black) and I picked up James, then went and rescued Micah from James' crib! Then I put Aleksa in her bed and raised the side (She's in the adapted bed for a little while at least so there's no concern about either wandering or inappropriate behavior at night... safer that way until we know what risks there are. She has, after all, spent the last 3 years in a mental institution with girls ages 4-35...).
Michael came in about then with his computer and opened the laptop up so it illuminated the room a bit. Then off he went for flashlights and candles. Now the room with 7 kids (Kristopher had come in) was lit, but Emma was still not there. I told the kids to stay put (as if they'd want to leave into the depths of darkness...) and I went into the other room to get Emma.
I'd last seen her laying on the beanbag chair waiting for her turn to go to bed (she and Lynae's room isn't in the same hallway as the other kids). I called out to her. "Hi Emma!" Nothing. "Emma, say "mama" ". Nothing. "Emma, Hi!" Nope. Not happening. I felt along the floor with my foot, not wanting to step on her and not even knowing if she was still in that room since Michael could have grabbed her and taken her with him. I found the beanbag and reached down to find something fuzzy. A leg? No, an arm... there was a head not far from it :). I said again "Hi Emma!" and nothing. Oh well... and I picked her up and felt my way back to the kids' room.
There they were, 4 of them huddled around the computer staring at.. nothing. Just light I guess?
We decided now would be a good time to sing a song, and Kristopher went and got our Daily Devotional book which we hadn't done that day. I really like this one, by the way- 365 Veggie Devo's I think it's called, and it's 1/2 page for every day. Long enough to get a point across, short enough for my kids to pay attention :) ).
So, we sang, we read, and eventually Michael found the 3 'glowing' people thingies we have and we set one up in each of the kids' rooms. Finally... off to bed!
It was quite the adventure, I assure you! I couldn't believe just how dark it was!!
Our power was back on at about 9pm, and the house had dropped about 5 degrees without the heater on. I was cold! :)
I was SO GLAD we'd already had the kids in their PJs and ready for bed!!
One more day in the adventures of the Cornish ten! LOL
On Sunday night when we got back from Orlando and had dinner, we got the kids ready for bed, medicines administered, teeth brushed... and myself and 6 of the kids had just gone into the hallway where their bedrooms are. When the power started flashing I started looking at where all the kids were. It was weird... it flashed on and off about 4 times for about 1 second each on/off then went off completely. So my quick headcount had Aleksa, Micah, James, Lynae, Brianna, and I was holding Wesley. Kristopher was just a few feet behind me.
It was almost 7pm, and it was SO DARK I couldn't see my hand in front of my face. Not just because my eyes hadn't adjusted, but because there seemed to be no moonlight and it was PITCH black!
I grabbed up Lynae, knowing she would probably be the first to freak out and hoping that everyone else wouldn't follow suit. Then, I quickly and calmly said "Ok, lights out, let's get in our beds" and set one of the kids down then reached down to pick James up and put him in his bed. He wasn't very cooperative about it (tho he couldn't see to cooperate, I guess) and I zipped up his crib tent. Brianna was wimpering and I tried to get her to go sit on Micah's toddler bed (YAY, he's slept in it 3 nights and aside from falling out a few times and me finding him on the floor, he's doing great!). She didn't want to. Then, I found the next little fuzzy haired child and said "Micah, climb up on your bed." When he didn't go, I took his arm and went to help him along on his way. He let out a little exasperated "I don't want to" which sounded more like "AHILINGBAIL" and I realized with a chuckle that it wasn't Micah! Nope, it was JAMES.
So... I put the other child in my arms down (now everyone was calm thankfully, tho it was still pitch black) and I picked up James, then went and rescued Micah from James' crib! Then I put Aleksa in her bed and raised the side (She's in the adapted bed for a little while at least so there's no concern about either wandering or inappropriate behavior at night... safer that way until we know what risks there are. She has, after all, spent the last 3 years in a mental institution with girls ages 4-35...).
Michael came in about then with his computer and opened the laptop up so it illuminated the room a bit. Then off he went for flashlights and candles. Now the room with 7 kids (Kristopher had come in) was lit, but Emma was still not there. I told the kids to stay put (as if they'd want to leave into the depths of darkness...) and I went into the other room to get Emma.
I'd last seen her laying on the beanbag chair waiting for her turn to go to bed (she and Lynae's room isn't in the same hallway as the other kids). I called out to her. "Hi Emma!" Nothing. "Emma, say "mama" ". Nothing. "Emma, Hi!" Nope. Not happening. I felt along the floor with my foot, not wanting to step on her and not even knowing if she was still in that room since Michael could have grabbed her and taken her with him. I found the beanbag and reached down to find something fuzzy. A leg? No, an arm... there was a head not far from it :). I said again "Hi Emma!" and nothing. Oh well... and I picked her up and felt my way back to the kids' room.
There they were, 4 of them huddled around the computer staring at.. nothing. Just light I guess?
We decided now would be a good time to sing a song, and Kristopher went and got our Daily Devotional book which we hadn't done that day. I really like this one, by the way- 365 Veggie Devo's I think it's called, and it's 1/2 page for every day. Long enough to get a point across, short enough for my kids to pay attention :) ).
So, we sang, we read, and eventually Michael found the 3 'glowing' people thingies we have and we set one up in each of the kids' rooms. Finally... off to bed!
It was quite the adventure, I assure you! I couldn't believe just how dark it was!!
Our power was back on at about 9pm, and the house had dropped about 5 degrees without the heater on. I was cold! :)
I was SO GLAD we'd already had the kids in their PJs and ready for bed!!
One more day in the adventures of the Cornish ten! LOL
Monday, January 10, 2011
Weight
Last week Brianna and Micah went to the doctor and both weighted EXACTLY the same amount. 28.25 lbs.
Today I brought James to the doctor and guess what he weighs?? Yep, 28.25. WEIRD?!
I also brought Kristopher today and Aleksa's appt was last week. They are both 43 lbs!
Wesley is about 23 lbs now (gained about 1.5 lbs since his Embassy appointment) and I think he still outweighs Lynae. She goes on Thursday, but her weight I expect to be more like 17/18 lbs. I think Wesley will be catching up with Brianna, Micah, and James before Lynae is catching up with him, but you never know.
Emma's out on her own as well weighing 35 lbs.
For those of you who don't keep track of my kids' ages and such, here's a rundown:
Aleksa (8 since October)- 43 lbs
Emma (7, 8 in February)- 35 lbs
Kristopher (6, 7 in February)- 43 lbs
Wesley (5, 6 in February)- 23 lbs
Brianna (5 since last week)- 28.25lbs
James (4 since August)- 28.25lbs
**ETA: Looking at the calendar... I wrote it down on the date for NEXT week, so I have to figure out whether I have it in my HEAD right, or the CALENDAR right... Usually the calendar is right, but I was a week off in my thinking (thought I was going to be at next Tues's appointment tomorrow) while talking to her, so... who know! LOL**
Today I brought James to the doctor and guess what he weighs?? Yep, 28.25. WEIRD?!
I also brought Kristopher today and Aleksa's appt was last week. They are both 43 lbs!
Wesley is about 23 lbs now (gained about 1.5 lbs since his Embassy appointment) and I think he still outweighs Lynae. She goes on Thursday, but her weight I expect to be more like 17/18 lbs. I think Wesley will be catching up with Brianna, Micah, and James before Lynae is catching up with him, but you never know.
Emma's out on her own as well weighing 35 lbs.
For those of you who don't keep track of my kids' ages and such, here's a rundown:
Aleksa (8 since October)- 43 lbs
Emma (7, 8 in February)- 35 lbs
Kristopher (6, 7 in February)- 43 lbs
Wesley (5, 6 in February)- 23 lbs
Brianna (5 since last week)- 28.25lbs
James (4 since August)- 28.25lbs
Micah (4 since September)- 28.25lbs
Lynae (1 since September)- soon to see, about 17/18 lbs...
I also got two phone calls today, one that allowed me to schedule Aleksa to go to Hope Haven, our 'localish' Down syndrome clinic (in Jacksonville) THIS MONTH! They usually have a 6 month wait but James was scheduled for March, Micah for August so we were on their cancellation list. Though I didn't want to move those two up (due to my desire not to leave Aleksa and Wesley for an entire day or to try to wrangle them both during another child's 3 1/2 hours of appointments...) I asked if I could 'add an extra'. I'm glad I could!
THEN, I got a neurology call for Wesley. That was QUICK! We only went to the pediatrician on the 6th (last Thursday) and he now has an appointment for THIS Thursday! I'm excited to get the ball rolling quickly for him!
**ETA: Looking at the calendar... I wrote it down on the date for NEXT week, so I have to figure out whether I have it in my HEAD right, or the CALENDAR right... Usually the calendar is right, but I was a week off in my thinking (thought I was going to be at next Tues's appointment tomorrow) while talking to her, so... who know! LOL**
Oh POOP.
Nope, not swearing, we have POOP!
Never been so excited for poop, and my mom will smack me when she reads this (because she, understandably so, wasn't as excited about it!).
Wesley has some issues with constipation. Like... I've never had him poop any 'normal' or real amount on his own. It has had to be assisted with once, and then when we came home we began Miralax powder (a full capful daily) and he still hadn't gone since beginning it on the 6th. Today... We have poop!
It also just happened to coincide with the flu shot appointments that I had for James, Kristopher, and Emma... so my mom happened to be at the house with Wesley, Lynae, and Aleksa when it 'broke loose'. My mom offered to stay an hour and a half and keep the kids longer so I could pick up the other 4 from school without having to load the car (and the boy that keeps pooping everywhere)... but I suggested that she go home and change her OWN pants... that he pooped on! Poor mom. First babysitting time for Wesley and he pooped all over her!
In other (not so poopy) news, Wesley and Aleksa were both good (and of course Lynae was) for her, and the morning went without hitch for her and for my doctor's appts for the other kids. The rest of the day we have NO PLANS except for school pickup, which is really unheard of! YAY! :)
This week promises to be much like the last, and really next week will be too. We have at least 4 appointments each week, several for multiple kids. Today 3 went to the pediatrician (this was visits 6,7, and 8 to the ped so far in 2011 and general doctor visits number 16, 17, and 18 this year). Tomorrow we have a school rep meeting, Wednesday an Endo appointment for Brianna, Thursday Lynae's 15 month checkup (yes, she's 16 mos but I was gone and wanted to take her for shots myself). Next week we have an ENT follow up for Brianna, GI for James, and shots for Brianna, Wesley, and Aleksa. Sounds like fun, right?? :)
Thankfully, after January our doctor's appointments will DRASTICALLY decrease! February is still a bit busy but after that there's only one or two a month-- or maybe none at all :)
We are planning and getting ready for my sister's wedding in March! So yesterday we went to Orlando and exchanged a gift Mike bought me (not because I didn't like it... but because I already had it...). Each time we've had a baby or adopted, he's given me a Willow Tree figurine. For Christmas he gave me a boy and a girl :). Now there are 8 little people and 2 parents on our "FAMILY" shelf in the living room. I love having a full shelf :)
We also bought supplies for the shower as well as tights and socks for some of the kids (on clearance :) ) to wear with their adorable little outfits (Elizabeth bought them for the kids for Christmas!). This was our first family outing with all 10 of us aside from church. It went well, the kids did great, and though there were stressful moments of (Wesley especially) the kids being antsy about waiting on something, it went as well as can be imagined.
One of the definite high points (or... LOW...) of the day was when I took the girls to the restroom at Target. I asked Aleksa if she was done (she hadn't peed) and she hopped right off the toilet. Unfortunately, she had JUST started peeing! So, now there was pee ALL over the place. On the seat, the floor, her pants... UGH! I plopped her back on the toilet to finish then cleaned her up as best as could be done in a public restroom with no diaper bag then had her stand away in "time out" for "peeskaing" on the floor. (peeska is Russian for pee). ICK! I dabbed at anything wet on the floor without getting too gross myself and cleaned off the toilet seat so Brianna go... Who knows what else was already on that floor... but it was certainly already far from clean.
Anyway, we purchased a new pair of pants at WalMart (because I didn't have any with me) that were cheap and now they are my diaper bag pair! And, I know to be VERY careful before asking if she's done when she's going potty. After all, I don't really want to wash her shoes every time I take her to the bathroom! On a side note, I don't think she understands the concept of "all done?" I know Emma still doesn't... I think she simply took my extended hands as a "get off now" and not as a question. She didn't seem to be intentional about peeing everywhere.
And so, the many adventures of the Cornish ten continues... if it's not one thing, it certainly is another!
Never been so excited for poop, and my mom will smack me when she reads this (because she, understandably so, wasn't as excited about it!).
Wesley has some issues with constipation. Like... I've never had him poop any 'normal' or real amount on his own. It has had to be assisted with once, and then when we came home we began Miralax powder (a full capful daily) and he still hadn't gone since beginning it on the 6th. Today... We have poop!
It also just happened to coincide with the flu shot appointments that I had for James, Kristopher, and Emma... so my mom happened to be at the house with Wesley, Lynae, and Aleksa when it 'broke loose'. My mom offered to stay an hour and a half and keep the kids longer so I could pick up the other 4 from school without having to load the car (and the boy that keeps pooping everywhere)... but I suggested that she go home and change her OWN pants... that he pooped on! Poor mom. First babysitting time for Wesley and he pooped all over her!
In other (not so poopy) news, Wesley and Aleksa were both good (and of course Lynae was) for her, and the morning went without hitch for her and for my doctor's appts for the other kids. The rest of the day we have NO PLANS except for school pickup, which is really unheard of! YAY! :)
This week promises to be much like the last, and really next week will be too. We have at least 4 appointments each week, several for multiple kids. Today 3 went to the pediatrician (this was visits 6,7, and 8 to the ped so far in 2011 and general doctor visits number 16, 17, and 18 this year). Tomorrow we have a school rep meeting, Wednesday an Endo appointment for Brianna, Thursday Lynae's 15 month checkup (yes, she's 16 mos but I was gone and wanted to take her for shots myself). Next week we have an ENT follow up for Brianna, GI for James, and shots for Brianna, Wesley, and Aleksa. Sounds like fun, right?? :)
Thankfully, after January our doctor's appointments will DRASTICALLY decrease! February is still a bit busy but after that there's only one or two a month-- or maybe none at all :)
We are planning and getting ready for my sister's wedding in March! So yesterday we went to Orlando and exchanged a gift Mike bought me (not because I didn't like it... but because I already had it...). Each time we've had a baby or adopted, he's given me a Willow Tree figurine. For Christmas he gave me a boy and a girl :). Now there are 8 little people and 2 parents on our "FAMILY" shelf in the living room. I love having a full shelf :)
We also bought supplies for the shower as well as tights and socks for some of the kids (on clearance :) ) to wear with their adorable little outfits (Elizabeth bought them for the kids for Christmas!). This was our first family outing with all 10 of us aside from church. It went well, the kids did great, and though there were stressful moments of (Wesley especially) the kids being antsy about waiting on something, it went as well as can be imagined.
One of the definite high points (or... LOW...) of the day was when I took the girls to the restroom at Target. I asked Aleksa if she was done (she hadn't peed) and she hopped right off the toilet. Unfortunately, she had JUST started peeing! So, now there was pee ALL over the place. On the seat, the floor, her pants... UGH! I plopped her back on the toilet to finish then cleaned her up as best as could be done in a public restroom with no diaper bag then had her stand away in "time out" for "peeskaing" on the floor. (peeska is Russian for pee). ICK! I dabbed at anything wet on the floor without getting too gross myself and cleaned off the toilet seat so Brianna go... Who knows what else was already on that floor... but it was certainly already far from clean.
Anyway, we purchased a new pair of pants at WalMart (because I didn't have any with me) that were cheap and now they are my diaper bag pair! And, I know to be VERY careful before asking if she's done when she's going potty. After all, I don't really want to wash her shoes every time I take her to the bathroom! On a side note, I don't think she understands the concept of "all done?" I know Emma still doesn't... I think she simply took my extended hands as a "get off now" and not as a question. She didn't seem to be intentional about peeing everywhere.
And so, the many adventures of the Cornish ten continues... if it's not one thing, it certainly is another!
Saturday, January 08, 2011
Fun time!
We had a great day yesterday! I'll start with the fun part...
Brianna's Birthday Party!
We had just grandparents and one other family come to celebrate with us, but it was perfect-- not to big, not too small :). Our guests just happen to have a little girl with a little extra 'something' and she will be 5 in just a few months. We all go to church together and our kids are in the same nursery classes, but we, as adults, don't get together all that much. All six of them were able to come and we had a great time!
One of their daughters made the day extra special by bringing Brianna's Birthday cake! It was BEAUTIFUL! It was a castle with turrets and everything. Pictures to come... but I didn't take any so I'll have to wait for them off of one of the other 4 cameras that was going :). Brianna loved her princess cake and is right now eating breakfast with three little princesses looking at her that were cake decorations!
Since Brianna's birthday is so close to Christmas, we waited almost a week after her birthday before the party. Last night we did pizza, cake, and just played for a bit. Brianna had a GREAT TIME, and I think the other kids (and "big kids" and adults ;) ) had a good time too! We enjoyed being able to spend the time celebrating Brianna and share time with other adults as well :)
Now... before the birthday party... of course there was quite a bit of picking-up-the-house, wrapping her gifts, getting the highchairs and such into the dining room... but we spent the morning doing all kinds of "fun stuff" for Wesley and Aleksa (and a bit for Lynae too).
We started the morning off at 7am driving to pick up the sweet young lady that made Brianna's birthday cake. By 8 we were pulling up at the hospital and registering for Aleksa's echocardiogram (heart ultrasound), a C-spine complete series to check her neck (kids w/ Ds are at risk to have a bigger spacing between vertebrae around the c-1 c-2 and this could cause paralysis if untreated and injured so it's a normal screening), and a chest x-ray for Wesley (to get a baseline and see what his lungs look like, if there's fluid- he sounds rattley) as well as an abdominal x-ray to see just how backed up his little backside is.
Since x-rays are really hard to accomplish with extra kids along (they can't go in the room), I was VERY glad to have help! We did Aleksa's series first, and after they said to me "we'll get a few people to hold her... kids like to wiggle." I replied with "let's see how it goes first. I had a feeling she'd do just FINE! And? SHE DID! She fussed a bit, but nothing major and she did it when we needed her to open her mouth, so it was great ;) My friend kept the other two kids in the waiting room.
Next was her echo which we all went back for and even though I'm pretty sure they're not allowed to tell me this... they don't see ANY PDA or ASD! YAY!! Those are what were questionable before so that sounds good :)
After that were Wesley's x-rays which he didn't care for but tolerated. They weren't too bad, though we didn't hear results on any of the x-rays.
Since it was only 10am when we finished with all of that... we started in on the next set of medical prods... bloodwork. For those wondering, we did a CBC (complete blood count), CMP (complete metabolic panel), TSH and T4 (thyroid function) and... maybe something else? On both kids. I also had 'leftover' bloodwork for Lynae since before I left for UA I was able to get only 1/2 of her labs drawn since she's so tiny. They were just doing a CBC and thyroid panel since she's so tiny and Brianna's thyroid requires monitoring (though that's probably related to her having Ds, we still wanted to check that there's nothing 'going on' with Lynae in that area).
Lynae didn't cry! She just sat there, let them draw, and went off on her way! Aleksa didn't fight, though she fussed about it. She kicked her legs but didn't move her arm a bit. Both were good girls!
Wesley, well, he bit me. HARD. Then, instead of holding his upper arm, I held his lower arm and his FACE. Since he has such rigid spasticity, we had to wait for him to relax and extend his arm, then as they did the blood draw he was only trying to bend his arm while she did the draw. I didn't have to do much except keep him from bending. He did great too, though it took 2 sticks for his.
After ALL of that, we drove the child wrangler (and HUGE HELPER!) back home, ran through to get taco's and went to the church. There we ate quick with Michael then traded off cars with him-- installing the carseats that were in the minivan (with me) into the 15 passenger.
THEN, off to Wal-Mart to pick up plates and drinks for the birthday party as well as some SHOES for our GIRL (Aleksa has been wearing Wesley's shoes for the last week and between her haircut and the boy shoes, well, she didn't stand a chance of being taken for a girl even with a pink shirt on...
We ran through there and back up to the school to pick up the other 5 kiddos from school.
Then started the house pick-up and get-ready for the birthday party!
It's been a BUSY two days, but last night we folded into bed at 8:30! And slept (mostly, despite a few child-wakings) until 7am :).
Today Michael is headed to a funeral in the afternoon, but most of the day is just going to be relaxing and playing with the kids.
A HUGE THANK YOU to April for coming with me yesterday AND for the beautiful birthday cake! You made my day and you made Brianna's birthday extra special with the cake and your whole family by coming to celebrate with us!
Brianna's Birthday Party!
We had just grandparents and one other family come to celebrate with us, but it was perfect-- not to big, not too small :). Our guests just happen to have a little girl with a little extra 'something' and she will be 5 in just a few months. We all go to church together and our kids are in the same nursery classes, but we, as adults, don't get together all that much. All six of them were able to come and we had a great time!
One of their daughters made the day extra special by bringing Brianna's Birthday cake! It was BEAUTIFUL! It was a castle with turrets and everything. Pictures to come... but I didn't take any so I'll have to wait for them off of one of the other 4 cameras that was going :). Brianna loved her princess cake and is right now eating breakfast with three little princesses looking at her that were cake decorations!
Since Brianna's birthday is so close to Christmas, we waited almost a week after her birthday before the party. Last night we did pizza, cake, and just played for a bit. Brianna had a GREAT TIME, and I think the other kids (and "big kids" and adults ;) ) had a good time too! We enjoyed being able to spend the time celebrating Brianna and share time with other adults as well :)
Now... before the birthday party... of course there was quite a bit of picking-up-the-house, wrapping her gifts, getting the highchairs and such into the dining room... but we spent the morning doing all kinds of "fun stuff" for Wesley and Aleksa (and a bit for Lynae too).
We started the morning off at 7am driving to pick up the sweet young lady that made Brianna's birthday cake. By 8 we were pulling up at the hospital and registering for Aleksa's echocardiogram (heart ultrasound), a C-spine complete series to check her neck (kids w/ Ds are at risk to have a bigger spacing between vertebrae around the c-1 c-2 and this could cause paralysis if untreated and injured so it's a normal screening), and a chest x-ray for Wesley (to get a baseline and see what his lungs look like, if there's fluid- he sounds rattley) as well as an abdominal x-ray to see just how backed up his little backside is.
Since x-rays are really hard to accomplish with extra kids along (they can't go in the room), I was VERY glad to have help! We did Aleksa's series first, and after they said to me "we'll get a few people to hold her... kids like to wiggle." I replied with "let's see how it goes first. I had a feeling she'd do just FINE! And? SHE DID! She fussed a bit, but nothing major and she did it when we needed her to open her mouth, so it was great ;) My friend kept the other two kids in the waiting room.
Next was her echo which we all went back for and even though I'm pretty sure they're not allowed to tell me this... they don't see ANY PDA or ASD! YAY!! Those are what were questionable before so that sounds good :)
After that were Wesley's x-rays which he didn't care for but tolerated. They weren't too bad, though we didn't hear results on any of the x-rays.
Since it was only 10am when we finished with all of that... we started in on the next set of medical prods... bloodwork. For those wondering, we did a CBC (complete blood count), CMP (complete metabolic panel), TSH and T4 (thyroid function) and... maybe something else? On both kids. I also had 'leftover' bloodwork for Lynae since before I left for UA I was able to get only 1/2 of her labs drawn since she's so tiny. They were just doing a CBC and thyroid panel since she's so tiny and Brianna's thyroid requires monitoring (though that's probably related to her having Ds, we still wanted to check that there's nothing 'going on' with Lynae in that area).
Lynae didn't cry! She just sat there, let them draw, and went off on her way! Aleksa didn't fight, though she fussed about it. She kicked her legs but didn't move her arm a bit. Both were good girls!
Wesley, well, he bit me. HARD. Then, instead of holding his upper arm, I held his lower arm and his FACE. Since he has such rigid spasticity, we had to wait for him to relax and extend his arm, then as they did the blood draw he was only trying to bend his arm while she did the draw. I didn't have to do much except keep him from bending. He did great too, though it took 2 sticks for his.
After ALL of that, we drove the child wrangler (and HUGE HELPER!) back home, ran through to get taco's and went to the church. There we ate quick with Michael then traded off cars with him-- installing the carseats that were in the minivan (with me) into the 15 passenger.
THEN, off to Wal-Mart to pick up plates and drinks for the birthday party as well as some SHOES for our GIRL (Aleksa has been wearing Wesley's shoes for the last week and between her haircut and the boy shoes, well, she didn't stand a chance of being taken for a girl even with a pink shirt on...
We ran through there and back up to the school to pick up the other 5 kiddos from school.
Then started the house pick-up and get-ready for the birthday party!
It's been a BUSY two days, but last night we folded into bed at 8:30! And slept (mostly, despite a few child-wakings) until 7am :).
Today Michael is headed to a funeral in the afternoon, but most of the day is just going to be relaxing and playing with the kids.
A HUGE THANK YOU to April for coming with me yesterday AND for the beautiful birthday cake! You made my day and you made Brianna's birthday extra special with the cake and your whole family by coming to celebrate with us!
Thursday, January 06, 2011
the run down
School for 5
KAD (mom's morning out) for 1
Pediatrician visits for 2
Lunch with Dad (and 2)
Pick up KAD
Home for an hour
nap (kids, not me! DARN!)
Pick up at school for 5
Empty van of 8 carseats and all the 'fun stuff' that goes with kids
Empty van of a wheelchair and 3 strollers
6 kids picked up oranges and threw them in the trash while I cleaned out the van
Speech for 2
Dinner for 8
Baths for 7
Bed for 8
Then my mom came over and Dad and I drove a little over an hour because there was a miscommunication and Michael couldn't sign all the car paperwork.
Did I mention that Mike was only home for about 20 minutes today? BUSY DAY!! :)
Did I mention that Mike was only home for about 20 minutes today? BUSY DAY!! :)
We now have a new (used) 15 passenger van!
And I'm exhausted :)
Tomorrow is an echo for Aleksa, x-rays for two kids and bloodwork for 2 kids and a sweet homeschooler from church is going to come with me to "supervise" the kids not in the x-rays. YAY!
Tomorrow night is a BIRTHDAY PARTY for sweet Brianna! Unfortunately, most of our guests are sick. But we will party anyway :D
5:30 am is not even 6 hours away...
Multiple kids-- one appointment!
Yesterday I received this question:
Rachel has left a new comment on your post "Adventures in a different type of blogging":
I'm curious how you handle doctor's appointments when more than one child comes? How do you focus on each child's appointment and talk to the doctor while still doing "crowd control"? We're about to have a second special little one and I know that both of them will continue to have a lot of appointments and I'm not sure how to manage that.
There's two different ways I can do it. If it's anywhere from 1-3 kids that are coming with me (at the moment... but I think this number is about to rise), then I am comfortable going to the appointment on my own and cycling through the kids and taking care of everything. If I have 4 or more kids coming along, though, I will bring a grandparent or babysitter along to help.
For times I'm flying solo, I strongly suggest a stroller if there's more than one that requires a constant eye. Wednesday's ENT appointments, for example, went very smoothly because I had my mom with me and I had the triple stroller along. Emma was content to sit in the stroller until her turn (last). Brianna is independent and doesn't need wheels. The two boys also were in the stroller and we did the "baby swap" throughout the visit.
Having medical records at the touch of a button with a blog will be REALLY helpful because I won't have to say "I don't remember when his tubes were... June? July? Oh, right... it was almost August (Oops!)." Instead everyone's info "should" be readily accessible. I always bring a few books and if there's someone that I know is particularly irritable at doctor's visits then I try to find something special for them. For a while we had a Baby Einsteins "mp3 player" with a caterpillar handle. Emma was ONLY allowed to play with that toy during doctor's visits! My kids especially love photo albums with pictures of the family, so those stayed in my car for a while.
I also set up expectations for the kids during visits. Rather than going with their Whims during appointments, I also tell them "no, wait, sit nicely, etc" instead of arguing with the child. A second request (of the same) generally gets a response of "I already told you, now it just needs to be happen."
I teach the kids from their first visit that they don't play on the floor, climb on things, or mess with the doctor's equipment. I usually keep a 'restaurant' pack of crayons in my purse so they can draw on the paper covering the table.
The kids get 'used to' having to behave while we have a different one being seen. Yes, there are multiple disabled kids. No, I don't let them get away with anything that a typical kid wouldn't be allowed to do! :)
Hope that helps, tho that's a much less 'regimented ' approach than you may have been looking for. Blessings!
Rachel has left a new comment on your post "Adventures in a different type of blogging":
I'm curious how you handle doctor's appointments when more than one child comes? How do you focus on each child's appointment and talk to the doctor while still doing "crowd control"? We're about to have a second special little one and I know that both of them will continue to have a lot of appointments and I'm not sure how to manage that.
There's two different ways I can do it. If it's anywhere from 1-3 kids that are coming with me (at the moment... but I think this number is about to rise), then I am comfortable going to the appointment on my own and cycling through the kids and taking care of everything. If I have 4 or more kids coming along, though, I will bring a grandparent or babysitter along to help.
For times I'm flying solo, I strongly suggest a stroller if there's more than one that requires a constant eye. Wednesday's ENT appointments, for example, went very smoothly because I had my mom with me and I had the triple stroller along. Emma was content to sit in the stroller until her turn (last). Brianna is independent and doesn't need wheels. The two boys also were in the stroller and we did the "baby swap" throughout the visit.
Having medical records at the touch of a button with a blog will be REALLY helpful because I won't have to say "I don't remember when his tubes were... June? July? Oh, right... it was almost August (Oops!)." Instead everyone's info "should" be readily accessible. I always bring a few books and if there's someone that I know is particularly irritable at doctor's visits then I try to find something special for them. For a while we had a Baby Einsteins "mp3 player" with a caterpillar handle. Emma was ONLY allowed to play with that toy during doctor's visits! My kids especially love photo albums with pictures of the family, so those stayed in my car for a while.
I also set up expectations for the kids during visits. Rather than going with their Whims during appointments, I also tell them "no, wait, sit nicely, etc" instead of arguing with the child. A second request (of the same) generally gets a response of "I already told you, now it just needs to be happen."
I teach the kids from their first visit that they don't play on the floor, climb on things, or mess with the doctor's equipment. I usually keep a 'restaurant' pack of crayons in my purse so they can draw on the paper covering the table.
The kids get 'used to' having to behave while we have a different one being seen. Yes, there are multiple disabled kids. No, I don't let them get away with anything that a typical kid wouldn't be allowed to do! :)
Hope that helps, tho that's a much less 'regimented ' approach than you may have been looking for. Blessings!
No afraid of naked :)
I love all the comments about the babydoll undressing! Some of you totally cracked me up :)
Here's a little more info/ answers to commenters' questions...
No, I'm not afraid of naked! LOL! I only dislike them undressing the baby dolls since it's purely deatructive at the moment. They aren't interested in changing their clothes, just on stripping the dolls.
The two kids doing it are actually both pretty good with fine motor. Aleksa undresses and dresses herself with very little assistance needed aside from helping get things on the right way (not backward). Lynae can also take most of her clothes off but isn't quite to dressing herself yet...
Anyway, love the suggestions and ideas... keep them coming and I love to hear your own experiences with naked tribes of Barbies and Groovy girls!
Wednesday, January 05, 2011
He's sleeping...
I took my laptop into Wesley's room and just sat next to him typing so he knew I was there, but I wasn't interacting directly with him (keeping him awake and making him notice when I left). I typed up the Q&A post (below) and by the time Michael and Kristopher got home, he'd just fallen asleep. Now he's in a good sweet slumber and tomorrow will be a new day.
Mary-- I do sing to my kids constantly (and half of them aren't real songs LOL) but tonight I felt like bringing him out of his room would be a bad idea since he was REALLY tired and needs to learn that that's where we sleep... And Brianna was already asleep in there when he started crying. She's not 100% quite yet and was really tired. So, tonight, he got the CD player singing and just my firm hand on his arm then just my presence next to him. He did great once I got my own attitude fixed :)
It's great to have so many people that really understand what it's like to have a new little one home that can't express themselves and just don't understand what's happening. I don't expect him to be grateful for us bringing him home. In fact if anything I think he should be resentful based on the limited knowledge he has about the situation (his own fate, etc). But it doesn't make it all that much easier to deal with a child that's throwing an all-out fit and fighting you at every move.
Mary-- I do sing to my kids constantly (and half of them aren't real songs LOL) but tonight I felt like bringing him out of his room would be a bad idea since he was REALLY tired and needs to learn that that's where we sleep... And Brianna was already asleep in there when he started crying. She's not 100% quite yet and was really tired. So, tonight, he got the CD player singing and just my firm hand on his arm then just my presence next to him. He did great once I got my own attitude fixed :)
It's great to have so many people that really understand what it's like to have a new little one home that can't express themselves and just don't understand what's happening. I don't expect him to be grateful for us bringing him home. In fact if anything I think he should be resentful based on the limited knowledge he has about the situation (his own fate, etc). But it doesn't make it all that much easier to deal with a child that's throwing an all-out fit and fighting you at every move.
Questions and Answers
Feel free to post in comments if you have a question-- I will try to post answers when I can. Here's one from this week:
Q: Hope Anne has left a new comment on your post "The culprit!":
Meredith, would you mind when you have a minute explaing about some of the "strict boundaries" you had for Alexsa right from the start, and how you implemented those? Or if you don't want to do it publicly, would you drop me a line? I expect we are going to have some definite CHALLENGING behavoirs with our little gal. ;0-) And I want to learn what your tips are. THANKS!
A: When visiting with Aleksa, we knew she would test boundaries as far as she could. She had several 'habits' that we knew wouldn't fly with our crew and at our house.
One of those things was looking at us and running wherever she wanted to go with the "pixie grin" on her face. She also would take any and all food offered to her and shove it-- whole-- into her mouth. Then she would gag and sputter and spit it back into her hand and hand it to us, then take it again and reingest it. Not only dangerous with choking, but disgusting :). Aleksa ate like an animal. Face in the bowl, not chewing, swallowing things whole and wearing half of it. It was a mess, not safe, and wasted a ton of food since she was wearing it or it was on the floor.
She hasn't run since we tog home-- tho she hasn't had much opportunity to either. I'm sure it'll happen, but for now, she's adjusting and possibly due to the other boundaries we've set, she hasn't tested that one yet.
The food we are working on and I'll leave for another post, tho I do address the behavior part of it below (not function-- but we are cutting things up and keeping a tight 'reign' on how much she can shove in her mouth at a time). Here are a few other things that I did immediately with her to set firm boundaries and help us all have a better adjustment...
The very first thing I did when I picked her up from the orphanage was "win." Yep, I said to her "I'm in charge, and you will obey." How? I put a seatbelt on her! We had a 2 1/2 hour drive (which turned into almost 5 hours because of snow and traffic) ahead of us and I immediately buckled her in the car. She HATED IT. She fought me, screamed, begged me to unbuckle it, etc. At one point she'd squirmed so much, and the roads were so bumpy that the belt was constantly locked, that I had to unbuckle it, loosen it, and rebuckle it. OH MY GOODNESS! You'd have thought I loosed a wild animal! She went full force lunging to get out of that seat! She wanted to grab the light-up controls at the front of the car (A/C and radio, etc) since it was dark out. I (once again) had to seriously wrestle her back into the seat and asked the driver to pull over so I could rebuckle her since the roads were so bumpy I couldn't even pull the seatbelt out without it locking.
For the first 40 min (including the belt-locking episode) the "inspector" (like a social worker) was next to Aleksa in the car. He asked, through our interpreter, if I was happy. He seemed SCARED. :) I said "YES!" I'm not sure what he thought of that, but the adoption was final and I had custody, so at that point... his opinion didn't matter :D
I never again had to struggle with the idea of wearing a seatbelt after that trip. No complaints about the carseat since she's been home (she's in a 5-pt Nautilus that goes up to 65 lbs in the harness). She learned in that trip that she will wear a seatbelt. Period. No more questions!
Some of the other things we quickly set was a boundary to keep her from going "up the step" into the kitchenette area of the apartment. We were in a 20x12 studio apartment with 2 burners, a sink and a minifridge. In that little space, I wanted to be SURE she couldn't get to the stove or other hot items. She'd go up the step, I'd put her down (firmly) the step, tell her NO (Nyet) and if she did it again, she got moved further away. She was already very familiar with the idea of time-out and YES she got a few in those very first days. She learned quickly not to go up the step. She would stand by it until she had permission to go up since you had to go that way to get to the bathroom as well. We also didn't have to worry about her playing in the bathroom since it killed two birds with one stone.
Once we got home, we have a baby gate on our kitchen but I rarely actually lock it all the way unless I'll be out of sight of the opening. She has not had any issues staying in the family room and playroom while that gate is unlocked. She learned in Ukraine that there would be boundaries on where she was allowed to be and she transferred that EASILY back home. She also has not gone into the bathroom without asking (which isn't gated) and seems to have transferred that boundary as well. I DO believe she had some boundaries at the institution, but we had to establish those for ourselves for it to 'transfer' that we, too, would have boundaries.
Another big area was that she expected food IMMEDIATELY. In the institution, food was served in a different building from the sleeping or daytime (Watching TV) buildings. When food was ready, the girls went there. They didn't wait. They were served, ate whatever was in sight, and left. This left us with two things: one, she didn't understand having to wait while food cooked, and two, she couldn't wrap her mind around a grocery store or restaurant or even roadside-stand where there was food that SHE couldn't eat IMMEDIATELY.
In our tiny apartment, removal from me while cooking wasn't a possibility. We had a tiny table with one chair which she quickly claimed as hers. She'd sit there then start banging the table and crying while I cooked. We'd move the chair away from the table and tell her no, she had to wait. If she continued I'd make her leave the chair and sit on the bed. If she still continued, I'd move the chair itself out of the room (into the bathroom) so it was out of sight and might help show that food wasn't coming right now. Most of the time one of the first two, or all three would work. Twice, we then had her SIT in the chair-- in the bathroom. That needed to be done only for about 1 minute and she stopped, came out (with permission) and waited nicely for the food. I considered giving her something to snack on (and if she was legitimately hungry, such as if the meal was later than usual etc, then I would) but I decided not to start that habit. At home, the kids wait for dinner. If I give them a snack first, they won't eat dinner. Why would I start something with her that wouldn't work once home?
Now home, I've just had to say no, she needs to wait, and she's done great. Now... whining between bites or eating in any civilized manner... those are taking a lot more work :)
The grocery store issue got 10,000 times better once she'd been with us a few days. The first grocery trip (when I realized this was an issue) she didn't know what to think of it and I was pretty sure I was about to be kicked out of the ritzy grocery store in Ukraine. However, when we got home and she was able to eat one of the apples I'd bought and I gave her a drink of juice and then cooked dinner... she was MUCH better. I think she understood we were bringing it home.
She's only been to the grocery store two times since then, and not at all since coming home. She behaved the second two Ukraine trips and listened for the most part when I said "Wait, later" (with signs but in English). She wasn't happy about it, but she stopped.
I won't pretend to know all the answers, GOODNESS I don't! But those are a few of the things we've done to set firm boundaries from the get-go.
IN ADDITION to those things, we've also been sure to give LOTS of hugs, kisses, snuggles and love when she does things right-- and "just because." After she's had a time out or other consequence, we've given a lot of opportunities for her to "do good" to be rewarded with hugs and kisses and love. And... occasionally some "tempts" like when her balloon went on the step and we'd leave it there for a while and she'd need to figure out that just because she wants something, if it's out of reach and not in an area she's allowed to go, that she couldn't have it. Of course, we'd only leave it there a little while and not put it there on purpose (because that's just plain mean :D).
**Michael wanted me to add that the boundaries we've used with her are always very concrete-- a door, a step, a gate... not a "line in the sand" or "don't go past the couch" type of boundary which doesn't have any definitive "one side, the other side" about it.
Q: Hope Anne has left a new comment on your post "The culprit!":
Meredith, would you mind when you have a minute explaing about some of the "strict boundaries" you had for Alexsa right from the start, and how you implemented those? Or if you don't want to do it publicly, would you drop me a line? I expect we are going to have some definite CHALLENGING behavoirs with our little gal. ;0-) And I want to learn what your tips are. THANKS!
A: When visiting with Aleksa, we knew she would test boundaries as far as she could. She had several 'habits' that we knew wouldn't fly with our crew and at our house.
One of those things was looking at us and running wherever she wanted to go with the "pixie grin" on her face. She also would take any and all food offered to her and shove it-- whole-- into her mouth. Then she would gag and sputter and spit it back into her hand and hand it to us, then take it again and reingest it. Not only dangerous with choking, but disgusting :). Aleksa ate like an animal. Face in the bowl, not chewing, swallowing things whole and wearing half of it. It was a mess, not safe, and wasted a ton of food since she was wearing it or it was on the floor.
She hasn't run since we tog home-- tho she hasn't had much opportunity to either. I'm sure it'll happen, but for now, she's adjusting and possibly due to the other boundaries we've set, she hasn't tested that one yet.
The food we are working on and I'll leave for another post, tho I do address the behavior part of it below (not function-- but we are cutting things up and keeping a tight 'reign' on how much she can shove in her mouth at a time). Here are a few other things that I did immediately with her to set firm boundaries and help us all have a better adjustment...
The very first thing I did when I picked her up from the orphanage was "win." Yep, I said to her "I'm in charge, and you will obey." How? I put a seatbelt on her! We had a 2 1/2 hour drive (which turned into almost 5 hours because of snow and traffic) ahead of us and I immediately buckled her in the car. She HATED IT. She fought me, screamed, begged me to unbuckle it, etc. At one point she'd squirmed so much, and the roads were so bumpy that the belt was constantly locked, that I had to unbuckle it, loosen it, and rebuckle it. OH MY GOODNESS! You'd have thought I loosed a wild animal! She went full force lunging to get out of that seat! She wanted to grab the light-up controls at the front of the car (A/C and radio, etc) since it was dark out. I (once again) had to seriously wrestle her back into the seat and asked the driver to pull over so I could rebuckle her since the roads were so bumpy I couldn't even pull the seatbelt out without it locking.
For the first 40 min (including the belt-locking episode) the "inspector" (like a social worker) was next to Aleksa in the car. He asked, through our interpreter, if I was happy. He seemed SCARED. :) I said "YES!" I'm not sure what he thought of that, but the adoption was final and I had custody, so at that point... his opinion didn't matter :D
I never again had to struggle with the idea of wearing a seatbelt after that trip. No complaints about the carseat since she's been home (she's in a 5-pt Nautilus that goes up to 65 lbs in the harness). She learned in that trip that she will wear a seatbelt. Period. No more questions!
Some of the other things we quickly set was a boundary to keep her from going "up the step" into the kitchenette area of the apartment. We were in a 20x12 studio apartment with 2 burners, a sink and a minifridge. In that little space, I wanted to be SURE she couldn't get to the stove or other hot items. She'd go up the step, I'd put her down (firmly) the step, tell her NO (Nyet) and if she did it again, she got moved further away. She was already very familiar with the idea of time-out and YES she got a few in those very first days. She learned quickly not to go up the step. She would stand by it until she had permission to go up since you had to go that way to get to the bathroom as well. We also didn't have to worry about her playing in the bathroom since it killed two birds with one stone.
Once we got home, we have a baby gate on our kitchen but I rarely actually lock it all the way unless I'll be out of sight of the opening. She has not had any issues staying in the family room and playroom while that gate is unlocked. She learned in Ukraine that there would be boundaries on where she was allowed to be and she transferred that EASILY back home. She also has not gone into the bathroom without asking (which isn't gated) and seems to have transferred that boundary as well. I DO believe she had some boundaries at the institution, but we had to establish those for ourselves for it to 'transfer' that we, too, would have boundaries.
Another big area was that she expected food IMMEDIATELY. In the institution, food was served in a different building from the sleeping or daytime (Watching TV) buildings. When food was ready, the girls went there. They didn't wait. They were served, ate whatever was in sight, and left. This left us with two things: one, she didn't understand having to wait while food cooked, and two, she couldn't wrap her mind around a grocery store or restaurant or even roadside-stand where there was food that SHE couldn't eat IMMEDIATELY.
In our tiny apartment, removal from me while cooking wasn't a possibility. We had a tiny table with one chair which she quickly claimed as hers. She'd sit there then start banging the table and crying while I cooked. We'd move the chair away from the table and tell her no, she had to wait. If she continued I'd make her leave the chair and sit on the bed. If she still continued, I'd move the chair itself out of the room (into the bathroom) so it was out of sight and might help show that food wasn't coming right now. Most of the time one of the first two, or all three would work. Twice, we then had her SIT in the chair-- in the bathroom. That needed to be done only for about 1 minute and she stopped, came out (with permission) and waited nicely for the food. I considered giving her something to snack on (and if she was legitimately hungry, such as if the meal was later than usual etc, then I would) but I decided not to start that habit. At home, the kids wait for dinner. If I give them a snack first, they won't eat dinner. Why would I start something with her that wouldn't work once home?
Now home, I've just had to say no, she needs to wait, and she's done great. Now... whining between bites or eating in any civilized manner... those are taking a lot more work :)
The grocery store issue got 10,000 times better once she'd been with us a few days. The first grocery trip (when I realized this was an issue) she didn't know what to think of it and I was pretty sure I was about to be kicked out of the ritzy grocery store in Ukraine. However, when we got home and she was able to eat one of the apples I'd bought and I gave her a drink of juice and then cooked dinner... she was MUCH better. I think she understood we were bringing it home.
She's only been to the grocery store two times since then, and not at all since coming home. She behaved the second two Ukraine trips and listened for the most part when I said "Wait, later" (with signs but in English). She wasn't happy about it, but she stopped.
I won't pretend to know all the answers, GOODNESS I don't! But those are a few of the things we've done to set firm boundaries from the get-go.
IN ADDITION to those things, we've also been sure to give LOTS of hugs, kisses, snuggles and love when she does things right-- and "just because." After she's had a time out or other consequence, we've given a lot of opportunities for her to "do good" to be rewarded with hugs and kisses and love. And... occasionally some "tempts" like when her balloon went on the step and we'd leave it there for a while and she'd need to figure out that just because she wants something, if it's out of reach and not in an area she's allowed to go, that she couldn't have it. Of course, we'd only leave it there a little while and not put it there on purpose (because that's just plain mean :D).
**Michael wanted me to add that the boundaries we've used with her are always very concrete-- a door, a step, a gate... not a "line in the sand" or "don't go past the couch" type of boundary which doesn't have any definitive "one side, the other side" about it.
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