Tuesday, March 31, 2009

Wow, 3 sizes?

When the kids came home to us Emma and Brianna wore size 3 diapers. Micah was in a size 2. Then slowly Micah went to a 3, Emma and Brianna to 4's, Micah to a 4, then Emma and Micah went to a 5... and now... Brianna is still in 4's, Micah in 5's, and Emma is in size SIX diapers! They may say on the box "over 35 lbs" but she is not quite 30 and has wet through at least 6 diapers in the last three days. So to size 6's we go! For the first time I now have kids in 3 different size diapers! And, as annoying as that will be, I just hope I can get at least ONE of the kids out of diapers before September. Otherwise it will likely mean four different size diapers. Or at the very least 4 kids in diapers, which doesn't sound so fun either. But... doable if necessary...

Last week I picked up a small potty to start using for Brianna. Thursday or Friday will be its 'unveiling' and all the kids will be home for the next TEN days with only 1 therapy and a doctor's visit for Emma. So hopefully a good amount of consistency will help me to know if Brianna is ready for toilet training. Maybe, maybe we can get her potty trained soon???

Boys will be MONKEYS!

Micah is such a little BOY!! With Kristopher I distinctly remember when he got more adventurous, more daring, began climbing, exploring, and doing new fun "boy" feats... What fun!

Well, Micah is at it... he's walking about 10 steps at a time now but still generally only walks TO people, not up and mobile just to walk. He's definitely getting there though :) In his new found skills of course comes TROUBLE :) After all, what fun are new skills if you don't get a little daring while using them??

So, a little recap of the last few weeks with Micah's experimenting with his new mobility. And did I mention he's now a CLIMBER??

- About 2 weeks ago in the bathtub Micah decided to stand up. Standing is fun! But standing for Micah usually ends in going back down. And unfortunately, Emma made sure that his descent was a bit quicker than usual. Fortunately I was right there next to them (of course, since they were in the tub), but still there's no reaction quick enough to catch his fall. Micah fell down onto the tub rail where the glass doors close and split his chin and bit his tongue. Both bled- a long time. But both were fine the next day and the cut on his chin looked really tiny once it finally stopped bleeding. We forced an ice pack on him (haha, how can you force an ice pack on to a 2 yr old??) and he never had any residual effects of the trauma :) Mom did tho LOL.

-A week later (yes, he had other baths between) he was in the tub again this time ALONE because of the last encounter and I was sitting right there... He stood up and as I reached for him to help him sit down he caught his head on the OTHER side of the tub. A nice egg showed up within 2 minutes and again- ice... The boy LOVES to stand up! The swelling went away completely in a short time and a very small bruise mark was all that was left. He was over it within 2 minutes-- except for the ice part ;)

-Have I mentioned how much he LOVES bathtubs?? A fes days ago our little man took off into the living room and since the entire main part of the house is babyproof I wasn't right on his heels. But I heard my bedroom door close and got up immediately to go get him out. Our room isn't not baby proofed, there's just more stuff for him to destroy in there :) . So from the short time it took me from the family room to my bedroom he'd gotten from the doorway into the master bathroom and into... the TUB! We have a step going up to our tub because it's a big garden tub. I must admit, I never even considered him going in to the tub! LOL So I walk in to find him soaking wet! There wasn't any water in the tub, no worries :). I'd taken a bath on Saturday and used a rolled towel as a pillow. It ended up getting soaked and I laid it out on the side of the tub to dry after. It ended up falling in to the tub and I hadn't known it, so it was really wet but inevitably padded his fall into the tub. Poor little wet guy was standing with just his nose above the rim of the tub looking at me with an "oops!" look on his face. He's a quick little guy! He was fine tho- not hurt at all, not even shaken up, but he knew he was in trouble!!

-Micah loves if you hold out your arms when he's standing and he'll walk over to you- or at least toward you if he can't make it the entire way. Well, Brianna thinks this is just great, but unfortunately for her, he's bigger! So Micah will walk over to Brianna and then PUMMEL her! He weighs a good 4 lbs more than her (he's 26, she's 22 lbs) and he generally leans over for him to 'catch' him and all she does is break his fall on their way down! :)

This little man is going to keep us on our toes! We've had 2 other 'toddlers' in this house but he's all about finding new trouble to get in to!

Spread the word...

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Monday, March 30, 2009

THE END!

After the IEP-- yes the day keeps getting longer doesn't it?-- we drove by the house, picked up E's knee braces and headed down to her PT session. She did GREAT!!! She is starting to do the reciprocal motion of her feet on the treadmill (moving one foot then the other). I've worked with her a lot this week hunched over and killing my back to get her practice walking and it really has paid off. She missed therapy last Thursday because Micah was sick but she has really progressed in the last week :) It was very encouraging to see her pop right up into a stand from a bench (using another bench to pull up with to get to a toy) and having her "walk" out of the therapy area with the therapist holding her around the chest (under her arms). Soon she may be ready for "walking wings" or something similar rather than me hunched down moving her legs each step of the way. I should get someone to videotape that sometime... it really is funny looking I'm sure!

Then HOME. Mike's mom and my mom switched off around 2:30 so his mom helped me get Micah fed and stuck around a bit while the others ate then headed off. Mike stopped by for just a minute on his way to school and brought me a strawberry creame frappuccino from Starbucks then off he went. Brianna and Emma took quite a while and finally got down and played, then it was PJs and stories and bed for the 4 musketeers... And now... the house is quiet. And I'm going to sleep!

The third part of the day- Emma's IEP

So yes, I dropped the kids off to my mom :) She was still there! And I took Emma and met Mike at a school 30 min away for Emma's IEP meeting. Not so short but it did all work out. Emma will get one month of therapy services beginning April 22nd at the school she'll be attending next year. 30 min each of PT/OT/and "language" (not to be confused with speech because she doesn't qualify for speech... whatever :) ). It will be a combination of time with me there and independent time with the therapists because it will make our Wednesdays a bit more confusing! It ends up that I'll drive to the school, she'll have one therapy, then she and I will leave, go to get Brianna, come back, and she'll have 2 more therapies back to back. Except between them I will probably need to go get Kristopher unless Mike can hold on to him (the perk of working where K goes to school) for that extra 30 minutes (which Mike can take as lunch) and then I'll get K when all is done... But it should be interesting. Only 4 weeks tho, then we're off for the summer...

Next year Emma will be in a class with 5-8 students. It's called a "Supported Level Classroom." There's a 1:3 maximum ratio, so though she won't have a 1:1 aide, she will have a classroom aide that works with her and 1 or 2 other children. Since she's not walking and needs help with eating and "personal care" (diaper changes), she will have another person with her a majority of the time and likely with only 1 other child since she requires a lot of supports right now.

I was VERY encouraged to hear the PT talk about getting her ambulatory!! I have been told over and over again that the school system will not work on walking with her because of where she's at... but here it is! They plan to use a gait trainer or walker with her (likely starting with the gait trainer since it provides more support) and they were very encouraged to see her progress since they met her in September at her initial IEP :) :)

The OT also surprised me because my understanding was that it will be very hard to find an OT that will work on feeding in school... we got one! She will be working with Emma on self-feeding beginning next year. Though Emma self-feeds now, it is still very much assisted. She only can handle very small bites of food, has a tendancy to choke, cannot work utensils, and drinks from a bottle. Those are some of the things that they will be working on and she will even work with Emma in the cafeteria at lunch time if that is necessary. :)

And ST, they have good communication goals for her which line up with her classroom goals of identifying objects and also will work on beginning sounds/speech because they listened to her vocalize and tell everyone about what the world was doing during the IEP meeting. I can't say it enough-- if you think someone might underestimate your child based on what is on paper-- BRING THEM!! It has made a big impact at both of Emma's IEP meetings to have her there sitting in the room and allow the teachers and therapists to meet her and know her in a more real way than her test scores and paperwork can show!

Ok, so once school starts in August all those therapies will be 30 min or more, 1:1 with Emma and she will be in 5 FULL day "kindergarten" (in the supportive level classroom). THAT will be a BIG change for her... and ME. YIKES.

The next set of activities

I went straight to my 4 month OB appointment from dropping Brianna at school. I can't believe I'm 4 months along! Wow, only 5 more to go?? Didn't I just find out I was expecting? Anyway, the appointment went well. A few weird things in it... the whole insurance mess with the lab they sent my results to... the fact that a 'screening' test they did for me came back positive. The dr said it would have FLOORED him had he looked at it earlier and not had the 'diagnostic' test back which gives the actual POSITIVE or NEGATIVE... which was negative. I gotta say, it's never good when a doctor goes through your lab results and says "good, good, good, WOAH!" Anyway, all is well there (and no, this wasn't to do with the baby, it was lab work for me). Baby's heartrate is still pretty fast- my doctor seems to think it's indicative of a girl-- we shall see in about 6 weeks ;) (22 week ultrasound with high risk dr and fetal echo).

I bypassed the quad screening. Yes, the dr wanted it done even tho I thought we had an understanding that I didn't want it. He said it's non-invasive and would "give them information" but I'm not interested in the wrong information... so no thanks :) 50% of those screenings that come back "positive" are wrong. 50% of the screenings that come back "negative" are wrong. Just like the positive screening I talked about above... WHAT'S THE POINT?? :)

Ok, so then after the dr's appointment I went home and spent an hour with Emma, Micah, and my mom around the house. Mom started laundry :) And we got clean sheets on the kids' beds (except K's, oops, which I realized when I went to put him in bed! LOL). The kids emptied the ball pit for the 100th time today and snuggled and cuddled with us both. Then I got out their lunches and headed out for a round of pre-k pickup.

Brianna was first and when I got to her school one of the moms said her daughter would love to have a playdate with Brianna. How fun :) So hopefully next week during Spring Break we'll be able to have them over to play for a bit. It's hard during the week because the kids all nap right after school (hers too) and they live almost 30 minutes away from us. So a morning during break will be much better!

From there to Kristopher to check him out about 30 min early from his class. He missed the birthday celebration for his friend but since he went to her birthday party yesterday I think he'll survive :) After he finished his lunch back at the house my mom gave him a cookie since he missed it at school.

the morning's first events...

Today started at 4am. Micah was awake and crying and apparently hungry... I got up, made him up a bottle and gave it to him, but he immediately tossed it a minute later before I got back to bed. So the couch became my resting place and I hung out there until 5:30am when I finally was able to go back to bed and be sure I wasn't going to have to pop back up as I laid down.

7:15 and I finally crawled out of bed. Mike and K had just started the shower and I got the other kids up and dressed. Thankfully Mike had gotten Micah out of bed and a clean diaper before taking K to the shower so that M wasn't screaming to get up :). Everyone was eating breakfast- except Mr. Early Riser that was playing in his PJs in the family room- when my mom arrived about 7:30. I went and got myself ready and by 8:10 Mike had left with Kristopher for the church and I was out the door with Brianna.

I dropped Brianna at her pre-k class and when I came out was met with several other moms that had just dropped off their little ones. One of the moms engaged me in conversation and I talked with her and 2 other moms for a few minutes. Two of them have little ones that are under a year old, one has a 2 yr old as well, and the third mom has a son that's almost 2. All of them also have a 3 or 4 yr old in the preschool.

I'm not sure why it turned this direction-- it started with a discussion on names (one baby was named Emma) but they asked about our adoption and a few other things about the little guys. I shared happily and it was as if each question invited me to share more and more of the testimony of Emma and Micah's lives and how far God has brought them in a year. I walked away from the conversation knowing that God had used that to impact one of the ladies-- I don't know which one! But I know that there was one that was "driving" the questions and the other two were piping in here and there with other insights or questions. I love it when God gives me the opportunity to share His love for His children and His purpose for our little ones w/ special needs (oh, all these moms have typical kids... the classrooms are 50/50 and all their kids are the typical 50%).

A long start to a much longer day... :)

A wild day...

breakfast
pre-k drop off (cool stuff there :) )
4 month OB appointment (weird but fine stuff there!)
home for 1 hour
pre-k pick up (more neat stuff!)
pick up K early
Emma's IEP meeting (good stuff too)
PT for Emma (more good stuff!)
dinner
playtime
BED (the long awaited part of this day!)

Saturday, March 28, 2009

My "day off"

Today almost seemed like a day off. Not that I didn't still take care of the kids and I was at the house all day... but...

I got up this morning with a really bad headache and went back to sleep for a bit. Then Mike insisted I take a nice warm bath to see if that would help. I don't know how long it's been since I took a relaxing bath, but he even moved his painting supplies out of the tub for me. So I went from bed to a warm bath and then fell asleep there for a few too :)

After that I got the kids dressed and shoes on and a lunchbox packed while Mike showered and got measurements he needed and we left- all 6 of us- to go to Lowe's and to Wal-Mart. We picked out a new paint for the bathroom (he started the project just after Christmas, decided the paint was old and thin and not covering, and then was too busy to pick it back up again). It's going to be a light blue. I think the master bedroom has been a similar color in the past... it's weird sometimes having actual memories that go back about 20 years of this house :)

Mike needed some more screening to fix the holes in our pool enclosure where a hawk dove through it (two times), a cat climbed it, fell through, then climbed back out, and some other areas that we're not quite sure how they were torn... And he needed a few things for a project he's working on at the church.

After our exciting (haha) trip to Lowe's we went to McDonald's for lunch because it's across the street and easy. Some neighbors were there so we had a nice chat and the young lady that was sweeping floors and wiping down the tables was very sweet and very interested in our kids :) She spent quite a bit of time checking on us and getting water (next to our table) to drink. Never had such great service at a McDonald's! She was very sweet.

Then off to Wal-Mart to pick up a birthday present for one of K's friends and I needed to do a grocery run. Mike and the kids wandered the store while I quickly shopped. Well, as quickly as is possible when you're getting food for a family of 6 :). I once had somene say "just shop in a circle- avoid all the 'junk' aisles in the middle of the store and you'll be done sooner, have a healthier selection, and have a lower grocery bill." I took that to heart and try to shop that way now. I even remembered the chocolate syrup for K's "Easter Sundae Party" this week after their egg hunt at school.

By 2:30 we were loaded up and headed for home! Mike laid down on the couch, Micah and Brianna in beds, and Emma and Kristopher watched Flushed Away for the 4th time in the past 24 hours-- thanks Mom and Dad for loaning it to us... we will be sending it back soon :) But now you know what they did while I was sleeping and taking a bath this morning LOL.

Then I got kindof a 'rush' project for RR and did that while Mike made dinner. Yep, he did! Ok, he heated up something frozen, but it's more than I did so it counts! And everyone (mostly everyone) even ate it. As much as some of my picky eaters EVER eat anything... (Emma had two servings!)

By then the weather was beautiful, the kids were fed and had late naps, so we went out for a walk. Kristopher is doing great on his bike! He doesn't need any help now except on occasion to get started again when the peddles are straight up. But otherwise he's looking UP now, steering well, and is able to even go up the long gradual hill on our street. And by the end of the walk he was finally stopping for cars and/or getting off the road. We still need some work there but Mike and Buttermilk (the dog) were right there to direct him while I pushed the stroller with the other 3 kiddos.

We're home now, K is enjoying some playtime in the tub with some 'color soaks' that he got a while ago from grandparents. He's been in there almost an hour but he usually showers so he's enjoying it! The other 3 kids are in bed and Micah is singing us this very sad sad song that begs to be taken out of bed. He did have a late nap... but still... And Mike just loaded the dishwasher (I did empty it earlier...).

Compared to the rush of my usual days and the stuff I usually do... today almost felt like a "day off". :)

Friday, March 27, 2009

Emma had art class too...

and there's NO WAY I took a picture.

Hers involved POOP, the PLAYPEN, and her MOUTH.

I made it through clean-up of the child and I can't quite go back in the room yet. Waiting for the fan to hopefully clear out the odor a bit-- YIKES.

I suppose I should get out some finger paints??

Celebrating with the Malones

Eli does NOT have Leukemia! He's headed home soon and his hemoglobin levels have been coming up with transfusions. No update on Chris (Dad) yet, but I wanted to post this so we could Praise God together for His Goodness! Here's their blog one more time if you want to go celebrate with them. http://www.themalonefamily.us

The Heimlich

The Heimlich and I are good friends now. We shake hands about once every week or two for the past 4 or 5 months now. Generally I say "here we go again" and we have our little rendezvous and then we go our separate ways. But today wasn't such a nice, clean visit. We al most brought others in to fill the gap between Heimlich and myself because even together we just weren't working...

Emma chokes. A LOT. She only ever took real solids starting 4 or 5 months ago, so this isn't a year-long thing. But any time she has bread, crackers that can compact, or many other things that we've already figured out. But-- chicken nuggets, hot dogs, ham, she LOVES corned beef, vegetables, rice, cereal, and a slew of other things seem to be fairly "safe". Why does she have trouble with bread and not with meat? Ah... that's the question.

She tends to store her food. With bread she tends to 'pack' it on her palate then throw it to the back of her mouth. She has no gag reflex, so it then gets lodged there. Yikes. So out of the high chair she comes, over my knee with her head to the floor, head down and a few pounds on the back and it generally comes out. If not, you can usually SEE it after that and scoop it out of the back of her throat. She has a red blotchy back after that because, well, you've got to pound her back to dislodge it... and since her capillaries sometimes burst from very little pressure at all, there are often some of those as well.

But not today. Today she was eating a cracker that has previously been on the "safe" list. The crackers themselves don't "pack" and the little bit of peanut butter between them has never been a problem. I still never walk away from her when she's eating though. I heard her choke just a little but seemed to get it out ok. Then she did it again.

This time when I took her out of her highchair and tipped her over she was breathing raspy (she never has actually STOPPED breathing, just fyi). I did everything as I have a dozen times before but nothing. She wanted to sit back up and I thought she'd gotten it either out or down, but no... still not breathing right. I did it again, scooped her mouth, tried... but nothing.

I have never felt like her choking was anything "major". It was always easily resolved and I don't get panicky very easily. Even then she was still breathing, so I wasn't panicking, but I was thinking-- if THIS isn't working-- WHAT WILL?? A third time, same thing... then I switched to the "adult" Heimlich-- the first time I've ever done this on Emma. But still no food came out. She did start to breathe a little better at this point though.

Since I knew her food had been chewed and was a cracker that wasn't "packable", I tried to give her some milk to see if now that she was doing better she might be able to wash the airway a bit. Normally I wouldn't have, but I felt like it was safe because I knew what she had choked on and that it was in small pieces already.

WHEW. She is fine. I've never before thought about calling 911 for my kids choking... not even a thought! But today that thought definitely crossed my mind today! I'm so glad she is fine. I think she'll be eating rice, cereal, oatmeal, um... mashed potatoes? Maybe some of those favorite meats of hers. ugh...

Morning Art Class

The design...

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The culprit (pouting because she got in trouble with Mommy and Daddy had just walked out the door for work...)

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The bathroom sink is now sparkling clean!  And smells like bubble gum (that was toothpaste incase you couldn't tell...).  This is a good alternative to the scent that occasionally occupies that bathroom since its primary user is a 5 yr old with bad aim and a very short attention span :)

Adoption Updates!

The Loux and Malone families are home! Please pray that they have a nice adjustment home and also continue in prayer for the Malone family for their health.

The family that met their daughter with Down syndrome and a cleft lip/cleft palate has been home for their 10 day wait and the new dad should be getting custody today (or Monday). Please pray that they release her to him today!

Two families have returned to Ukraine and will be getting custody of their children today! Pray for a quick ending process and a safe return home.

Continue in prayer for the family awaiting a positive court turn out, their son is in an institution and they are having a very slow and difficult process. This week has been one of just waiting...

Two families were submitted on Monday to the SDA in Ukraine! One has received a travel date and the other is waiting. Another family hopes to be submitted on Monday. One more family has finished their dossier and is working out some kinks in it before it's submitted.

Our family in Haiti- missionaries now- is doing well and I'm sure appreciate your continued prayers as they live this 'new life' while they await the completion of their son's adoption.

The family adopting two girls from Latvia are in their appeals period and will be returning very soon to pick up their daughters!

The family adopting from Russia arrived yesterday morning! What a sweet reunion it will be today with her and her son after many months of separation. Pray for favor in their process.

Continue in prayer for the other family facing difficulty with their Russian adoption. A final decision has not been made as to whether they can continue or not, but your prayers are much appreciated!

One of our families adopting from Estonia has met their older son w/ Ds and is waiting an appointment to return to adopt him.

Please keep all these families covered in prayer!!

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Yay, they're home!


Pray For Malones


Aiden

Thursday, March 26, 2009

Please Pray

For the Malone family. They are the ones that are newly home (Wednesday) with their two new sons, Micah and Matthew. When they got home Chris (Dad) finally got to a doctor and was sent home to rest with double pneumonia. In the mean time their youngest biological son, Eli, wasn't acting right and seemed very pale so they took him to the doctor. Eli was immediately hospitalized and has been on blood transfusions for 2 days now. His hemoglobin was dangerously low and they are now looking at the possibility of Leukemia. Eli has Down syndrome. He will have a bone biopsy tomorrow to know for sure. There's still another "option on the table" and we are praying fervently that this is what Eli has since it generally goes away just as strangely as it comes on.

If you have a moment please hop over to the Malones' blog and let them know you are praying for them. You can also check there for updates. www.themalonefamily.us

Someone's just funny

Brianna was in a funny mood last night! She wanted to wear Micah's baseball hats-- backward! She was playing with a baby doll at the same time and then later got Kristopher to put a backpack on her. She'd just gotten out of the tub and was wandering the house in PJs... It was really cute! I love watching her pretend play.

Saying goodbye...

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In the video- she found the oven rack that I took out of the oven the day before and was intrigued by it being in the dining room. Kristopher and Mike are in the background- Mike was bathing Emma and later asks about her getting out when I told him there's a towel in there. Apparently he decided Micah was getting a bath too- which I wouldn't argue with! I just asked him to give Emma a bath since I'd been bent over the tub with Brianna already :)

Micah's throwing up...

I heard him choking and pulled over on my way to drop the kids off at school this morning. Then he released. His carseat, himself, and the empty seat next to him are all needing a good hard scrubbing.

We went home and I ran in and grabbed some towels including one that was wet and ran back to the car. Brought the two to school that weren't throwing up and Mike started wiping off puke from the seat and Micah. He'd gone to work out this morning so I had all 4 to get up there. Luckily he got to the church just a minute before me and was able to stay at the car so I didn't have to get Micah out.

Poor guy (Micah)... I stripped his clothes off and stuck him in his crib with a few washable toys and he is happy and content. I opened his bedroom window for some fresh air in there and... well... he's sleeping now. Here's hoping he feels better soon AND that no one else shares the love.

Wednesday, March 25, 2009

Kristopher's first class play!


Make photo slide shows at www.OneTrueMedia.com

Kristopher was the frog in the play "The Little Red Hen" this morning! From where I was sitting it was hard to get him in the shot very well, but you can still see him pretty well. Yep, even the pre-k required nose-pick :) Kristopher was one of 5 kids with a 'role' in the play, and then other kids introduced and closed out the show. It was really cute! He did great!!

What DID we do for World Down Syndrome Day?

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Well... on the actual DAY, we all wore our Buddy Walk shirts but otherwise didn't do anything very exciting.  Mike and I got my parents to come over mid-afternoon and then we went to Orlando for some time by ourselves.  Not exactly a celebration for the kids LOL.

BUT... On Tuesday we celebrated a little more 'outwardly' :)  I actually washed all the kids' shirts between Sat and Tuesday (this is sometimes a GREAT accomplishment!) and they wore them to their Tuesday classes.  Brianna and Micah are both part of Kids' Adventure Days (aka Mom's Morning Out) at our church.  Their classes consist of 8-12 typical students plus them.  Their teachers haven't had experience with kids with Ds necessarily, but took them in with open arms and have asked questions and been very encouraging and helpful to both of the kids.

We decided to take WDSD as an opportunity to say THANKS to those people that aren't "used to" working with people with Ds but have openly accepted our children.  I found some M&M Premiums that had Triple Chocolate (milk, dark, and white- a trisomy of chocolate :) ) and I super-glued (literally LOL- this is what I was doing while we were in the end of the Ukraine chat on Monday night! LOL) the Blue and Yellow ribbons on each box.  We sent in a thank you note along with it to the classroom teachers.  We also found a mixed bag of Kit-Kat bars with the triple chocolate as well.  I made up a basket with blue and yellow crinkled shredded paper in the bottom and 21 chocolates of 3 varieties along with a note of thanks for the rest of the nursery staff.  They now have all 4 of our kids on the weekends and have been great about allowing them to participate at their age-level or where it may be more appropriate- Emma stays in Micah's age-group on weekends with the 0-2 yr olds.  She's stayed 3-4 times now and not had any difficulties.

And one more group we wanted to thank was the church leadership.  Mike happened to need me to bring him a few dollars and was in a staff breakfast, so while I was there I also delivered a thank you note to our pastor along with one of each of the little Kit-Kat bars wrapped in blue and yellow ribbon.

Lastly, I wrote up a quick 1/2 sheet of paper that had 4 paragraphs.  One about what Ds is.  One about the specific child that is in the class (This part is different for M's and B's classes), one about WDSD and our family celebrating our kids, and one with a quick invitation to ask questions and a link to a website of info.  Then we signed it from the family and printed a small photo of our family on the bottom.

I printed enough for each student and got permission to send them home with each child in Micah and Brianna's class.  I know that parents probably know there's a child in their class with Ds, but they may or may not know what Ds is or anything about our kiddos.  It's almost the end of the year, but this is a nice "non-pushy" way to celebrate our kids and take the opportunity to educate and raise awareness at the same time :) 

When we told about the child I focused on how being in a class with same-age peers was helpful to the child. 

So... the photo at the top is the three kiddos before they left for school on Tuesday.  Kristopher already had left for school with Mike.

Tuesday, March 24, 2009

Fleece, sewing needle, scissors, and a hammer

Makes a cover for Emma's knee braces so that she can wear them more often than just during actual therapy time!

Emma's braces are worn right now only when she's at PT or we're working on standing with her at the house.  This is my attempt at a solution to make it so that the braces can be worn under a little less than immediate direct supervision.  This brace cover is almost finished... (back)

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It has a drawstring at the top and laces up.  These are the back of the brace.  The top portion of the brace goes around the back of the thigh and the bottom part around the calf.  The cover laces up the back of her leg.

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This is a view of the front, there's thick Velcro across the front of the braces, and the front of the cover is just roses and pretty girly patterns :)

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Brianna wanted in on the pictures too :)   Here Emma is leaning up against the couch wearing her knee braces (and ankle braces).  She's doing so good it almost looks like she could just walk away!

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This shows one of the dangers of her wearing the braces without someone literally holding her... this hinge has a sharp point at the front of the hinge on both sides (4 total).  The hinge itself is dangerous for little fingers.

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This is Emma wearing it from the back.  The bottom of the brace cover isn't hemmed yet so I just tucked it up inside itself... looks kinda weird in this photo.

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But when Emma bends her knees... such as in a kneeling position, this is another danger of the braces.  The plastic pieces touch in the back.  This is bad for two reasons.  1- fingers might get pinched.  2- it sometimes pinches the back of her knee.

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Here she's kneeling with the brace  cover on, and the fabric keeps the plastic from hitting itself... protects the fingers, protects the inside of the back of her knee!

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So... the fleece is the fabric, I sewed pieces here and there, hems, a pocket for the drawstring, that kind of thing... but the hammer is for the 'holes'.  You cut a small slit in the fabric, feed the other side of this 'ring' through, then hammer it using a special tool which splits the other side open and grabs the fabric. 

It took probably 2 hours for me to make the one cover, and now that I have a pattern it won't take me as long for the next one... but I have to at least find the time to start it!!

We hope this will give Emma the ability to wear her braces much more often and thus to practice her skills more- especially standing and learning to put one foot in front of the other!

Monday, March 23, 2009

Adoption Questions... #2

I want to prepare for my new preschooler with Down syndrome. What things should I do to prepare for their arrival? What things should I have ready for him to sleep, play, learn with? What are some unique things that I might consider getting for him?

One place to check in with when preparing for the adoption of a preschooler with Down syndrome would be your local school system to get whatever possible started for him (possibly just to inform them that he will be coming in to the system soon and find out what options may be available for him).

Your pediatrician is also a necessary place to start because they will likely be the first person that the child needs to see once coming home. Letting them know that your intention is to adopt this child is a good start, but if you don't already have any children with Ds they may also be a source of information or a person you may want to give information TO! :) There are special weight and height charts for children with Ds and it's important that your doctors use these to follow your child's growth appropriately (if they do not fall on the typical scale... which some will and that is ok too!)

If you don't already have contact with a cardiologist this is another thing to do before coming home. Even if your child's paperwork says there is no heart issue, you will probably want to have them checked once thoroughly simply because they have Down syndrome. Half of the children with Ds have a heart condition and a lot of those are 'simple' yet many are more complex. There will likely be 'sounds' that are audible to a physician if the child has a heart defect, but some conditions such as a PDA or PFO may not have an audible sound but can be seen on an echo. Let your cardiologist know what the expectation of cardiac diagnosis is and especially if there is a firm diagnosis, discuss what that means for your child. Especially older children (over 3), who can have underlying lung and cardiac issues if they have a large defect that has been left unrepaired.


If your child is able to pull to a stand and is a preschooler then I would guess that for sleeping he will probably be ready at least for a toddler bed. If you'd rather not go that route then a twin bed should also be fine- with a side rail. If the child is small and you can babyproof the room with a gate at the door, maybe consider a mattress on the floor for a time until it's safe to have him sleep at the height of a twin bed.

For play, a kid is a kid :) If the child is significantly developmentally delayed you may find that your child interacts with toys that are aimed at a much younger age group. In an orphanage sometimes there is an abundance of toys but often there is not much available. This completely depends on where they've grown up! Many children find musical toys and cause-and-effect toys the best to start with. Toys that teach are great, especially if they speak things that you will want your child to learn such as colors, body parts, alphabet, and numbers-- in English! :)

In our home we found that toys that are "all in one piece" tend to be played with. Toys with multiple pieces tend more towards throwing and are brought out more when the kids are being helped with them :). Puzzles, shape sorters, play dough, and alphabet magnets are all great but for us they are stored away and come out during instructional playtime! Some other things like this are 'pegs' and a foam pegboard, pop-beads (an infant toy but good for hand-eye and strength development), and a large bin of rice or beans for sensory play. Lacing/buttoning dolls, magna-doodle (with attached pen), Leap Frog toys that are one piece (the alphabet bus is a favorite though the 'dolls' aren't often with it), the learn and play puppy or another similar toy that says body parts and nursery rhymes, musical piano toys and other musical instruments... these type of toys are great for individual playtime and 'teach' while a child plays-- and aren't in 100 different places around the house :).

Some unique things you might consider that are definitely NOT NECESSITIES but might be something you find useful based on your situation...
A bar that goes in the door frame made for holding a swing is a great thing to use during long winters or hot summers if outdoors are not accessible. These can hold up to a teen's weight and can be used with any swingset swing such as an infant/toddler seat or a regular preschool swing. The cost is higher, but it's something you may find you get a lot of use out of- swinging can be very therapeutic!

A sandbox is another great tool if there's a dry place outside to have one. Especially kids that need a lot of sensory input, such as those that have not had a lot of interaction and are really seeking input. In a similar way, playtime in the tub provides stimulation all around in a fun environment but it is a different type, so both are great tools!

If your child is standing, then a small trampoline with a 'bar' to hold on to and jump is great fun, good exercise, and a wonderful therapy tool as well!

I'm adding this in later... a ball pit is also a lot of fun! Colorful balls can be purchased about $10 for 100 balls and a $5 baby pool will hold 100 or 200 balls easily. It's not an expensive toy, but it will probably get a lot of use. The only hard part is keeping the balls contained :) Garbage bags, a bin, or the bag the balls came in work fine for clean up but we have tended toward leaving that activity out- at least for now- and just putting up with the balls (and putting them away constantly!) since the kids play with it so much!

I hope others will add their own ideas and thoughts to the comments. There's SO MUCH out there that these are just a few of many and are definitely not necessities... simply suggestions!!

What do you do with

Fleece, a sewing needle, scissors, and a hammer?

Things That Make You Go

Hmm...

Sunday, March 22, 2009

Airshow Pictures!

Here's the flight line.  We were able to go up to the planes in the flight line and some of the pilots were there with their planes :)

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This plane (above and below) is painted to look like the Blue Angels plane.  The pilot is over 70 years old and this was his last flight in an airshow.  He's selling his plane and retiring.  The show was great though, more pic's in the air below...

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These are inside of an old medical chopper.

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Yep, I was really there too ;)

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Here's my commercial.  There's a new sandwich/soup shop in  town called "The Bus Stop Cafe".  They have GREAT food!  This is a regular size white standard paper plate and the sub was way more than I could eat.  They only charged $5 for it, which considering we were at the airshow where a 20 oz soda is $2... well, you get the idea.  I've had their food once before at the marriage conference Mike and I went to at the church- they catered the Saturday lunch.  I understand the cafe is near where US1 splits into N/S lanes on the north end of Titusville.  If you're local go check them out!

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They kicked off the airshow with a parachute demonstration where two guys jumped and one faked a false deploy then pulled his second chute.  Then they had this jumper with the American flag and the Star Spangled Banner was sung as she came down.  A really neat way to get started.

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I don't know most of the names, but I'll post in the ones I remember!  This plane is called the screamer as a nickname because of the sound it makes going through the air.

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Inverse in flight...

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This group is called the Mavericks.  They flew so close together sometimes that it was amazing.

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I don't remember their names.. LOL

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This is the Blue Angels plane, privately owned of course.

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And this was the ending to the day- well after the airshow.  This is the remnants of the trail left by the Space Shuttle Discovery after a beautiful sunset launch.  Look at all the color in that cloud of smoke it left behind.  I hear it was beautiful!  I was sitting in the hallway waiting for my kids to go to sleep and didn't even remember it was going up until I felt the floor shake.  Mike quickly walked outside in time to capture this shot.  Yes, we're really that close where the whole house rumbles when the shuttles launch.  Rockets too, usually... I bet we'd be surprised to feel a real earthquake- we just assume when the world moves another launch is going! :)

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Questions from adoptive parents...

I have the privilege and honor to talk with a lot of adoptive parents throughout the week and because they often come with similar questions to one another, I want to start sharing some of the questions on here along with my answers. I know there are several people that read along that have shared with me that they are considering adoption or special needs adoption and I hope this may help others with some of their own questions as well...

So, here goes...

What was it like to adopt two children instead of one? What are the pros and cons to adopting two, and even though I know you wouldn't change the past, would you recommend adopting 2 at once to someone else?
For our family adopting two children together meant more snuggles while in country, more paperwork, and more diapers. Once we were home it was two more to care for, two more to love on, and two more to receive love from. Because of the circumstances of their lives and the limitations on their futures, it also meant that it was two less children to meet the fate of death, alone, in a mental institution.

Here are some pros to adopting two together:
  • friendship: My two little ones have a sweet kinship. Really all 3 of my little ones with Ds do, and it's so nice for them each to have a sibling that is going to grow up with them and be a friend and not bypass them on the road to maturity. They will have each other in a lifelong friendship and bond that is wonderful!
  • fees:In Ukraine a majority of the cost of an adoption is travel and the amount of time a family has to spend in the country. Fees for facilitation are only about 1/3 of the total cost. In general these fees for a second child are 25% of the fees for a first child. There are other fees to pay to the US such as embassy fees, visas, medicals, and such, but these are still less than $2k. Then you have airfare and food/clothes etc.
  • timeline: For us we knew that we could not afford to go back on another trip, not any time soon anyway, so we knew that if we were going to adopt two at all, we had to do it at the same time. So our timeline was part of it. The lowered fees helped, but we knew we wouldn't be able to do the extended travel again soon.
Here's some cons to adopting two at one time:
  • adapting: Instead of one child to acclimate to the house we had two. Honestly it wasn't so bad because we all did it together. But I imagine with older kids it may be more difficult if they play off of one another to have two children that you are trying to acclimate to the house/culture/environment/foods.
  • caring: Of course there's more diapers, more bottles, more laundry, more sheets, more messes, more chores, more lunches, more trials, more schedules. But there's also more hugs, more kisses, more successes, more love.
  • medical: The medical side of things is a big one for many people. Honest thought, considering your support system, considering whether your employer will allow sick leave for your child's surgery so one parent can keep the healthy child and the other stay with the hospitalized child... these things are what are necessary to evaluate to find out whether you can handle the situation. And even if you're adopting two 'healthy' children that don't need immediate medical care... my 'healthy' little one ended up in the hospital with pneumonia for 4 days right after the other got out of 2 days at the hospital. You never know what life will throw at you with ANY child... so having the thought to talk about and plan it out is always a good thing.

I would, absolutely without a doubt go back and adopt two children at the same time. God just needs to show up and tell me to GO and I'll be there :) Would one have been easier?
God calls us out of our comfort zones sometimes. It would have been much easier for me to have gone with "my plans" of a healthy 5 yr old that was walking and talking. But He stretched us with the two children He sent us home with and we have been abundantly blessed by every moment of it. Heart surgery, throat surgery, pneumonia, ear tubes, ER visits, and the like, those overwhelming periods of time when you think "WHY God??" are nothing when compared to the joys, the love, and the peace that we have with our kids. And to have been able to experience the Miracles of Christ's power in their lives has been overwhelming at times. God is good, follow Him and you're in good shape :)

Some awards to pass on...

When life gives you lemons...
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Thank you Amy and Jill for sending this award on to me!  Sometimes life isn't all we imagine it can be, but God's way is the best way and I am learning that first hand :)  Plus, I love lemonade :)
Here are the rules...
Put the logo on your blog or post.
Nominate at least 5 blogs that show attitude and/or gratitude.
Be sure to link to your nominees within your post.
Let them know they have received this award by commenting on a post.
Nominate your favorites and link to this blog
Today I'm going to stick with categories.  This one is for all those parents that have a biological child with a disability and have taken that 'lemon' of a diagnosis and turned it in to lemonade by deciding to change the life of another child with disabilities through adoption.  So, all you mommas, claim your award!!
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Awarding my Best Friends
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Thanks Lu!  I've missed our chats here recently, I'm glad to hear you're mending well though. 
The rules of this award are to pass it to ten friends!
For this one I want to pass it on to everyone that comments on my blog.  Whether I know you outside of this arena or not, thanks for being a part of our lives.  So, if you've ever commented here, claim your prize!
*psst, comment on this post and claim it too!  Better late than never ;)
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A big thanks to Kris  and Gillian for this award.  Except that now I have to think LOL.  Sorry it took me so long to post it!
Step 1: Respond and rework — answer the questions on your own blog, replace one question that you dislike with a question of your own invention, add one more question of your own.
Step 2: Tag - eight other bloggers to do the same.
Here goes, to any and all that would like to answer these 19 questions and can find the time to do it.  YOU ARE TAGGED!  I will enjoy reading them, so link back over to me in the comments so I can check out your answers :)
Here are the questions:
1) What are you wearing right now? A red shirt and jeans.
2) What is your biggest fear? This one's a hard one.  I try so hard not to live in fear, because there's so many things to be fearful of and all it does is rob your joy.  But of course fear can grasp us all!  I don't have a fear for myself right now.  But my biggest fear in general that I have to continuously surrender is the fear of what would happen with our children if Mike and I were to pass away 'early' in life.  I know they're a handful for any one person but I dread seeing them split up.
3) Do you nap a lot? Really?  Is this a joke?  I only nap when my husband is home on a weekend and is able to watch the kids, or if all the kids sleep at the same time during the week.  So no, not very often.  I do try to lay down during 'rest time' for my kids now that I'm more tired with this pregnancy but I rarely actually get a nap.
4) Who is the last person you hugged? Kristopher, Brianna, Micah and Emma as I sent them to bed about 30 minutes ago.  And Mike about 30 min before that when he headed out to the park to do homework.
5) What websites to you visit when you go online?  Right now I'm not on the computer browsing a whole lot.  I visit MSN for weather :)  And Hotmail for my e-mail.  And Facebook on occasion to check up on things there.   And... Google Reader to check in with all my adoptive parents.  Right now I'm not visiting blogs other than RR blogs or forums outside of RR (those come to my e-mail), but usually I'm part of 3 forums for parents of kids with Ds to some degree or another.  ROA is a private forum.  Down Syndrome Journey is a pro-life forum, and Downsyn I pop in on from time to time to say 'hello'.
6) What was the last item you bought? Hmm... Mike and I went out last night and did a little bit of shopping then went out to dinner.  I think dinner was the last thing we bought- Chipotle. YUM :)  But the last actual item I bought was a weird assortment of things from Target including razors and shaving cream, dog treats, socks for Kristopher, and maybe one other thing I can't think of.  Hey, we were in Orlando without the kids...
7) What’s thc last book you read?  I just finished reading "Nick and Slick" which is a self-published book that's about to be picked up by a publishing company.  Mike got it from his professor at school and I really enjoyed it!
8 ) If you could go to the Oscars, who would you want to sit next to? I not only wouldn't care, I probably wouldn't go.  I never was much interested.
9) Has a celebrity’s hair cut ever influenced your own hairstyle? I've had the same "hairstyle" since I was little.  My sister cuts it, usually, and my mom used to.  I've cut it myself a time or two as well.  I'm not even know if you could classify it as a hairstyle because it's pretty much just long and straight.  But it works and stays out of my face.  One day maybe ;)
10) What is one skill you wish you had, but don’t? I would love to be able to.... ???
11) What was the last movie you watched? The Jungle Book.  Animated Disney version :)
12) What is the luckiest thing that ever happened to you?  Not sure I really would call it luck but I'd have to say the best thing would be having a guy like Mike come into my life when I was 15.
13) If you had a whole day to yourself; no work, commitments or interruptions what would you do? I'm pretty sure I wouldn't know what to do with myself.  Does this mean no kids and that the house is already clean and organized?? I'd definitely sleep in, eat a late brunch, read a book, take a bath, eat a late lunch of something super-easy or even grab something on the road just for kicks.  If the weather was good I'd go for a swim and take a nap in the hammock.  Then watch a movie with dinner and by then I'd definitely be missing the rest of my family and want to give them all kisses and hugs before they went to bed...
14) Is there a major goal you have that you aven’t yet achieved?  I don't know if they're goals, maybe more like dreams, but I really want to go back to Ukraine and have an audience with some of the orphanage directors where I could share the story of Emma coming to our family and the progress she made in the time since coming home.  I want to teach some practical things that the workers can use to help the children in their care to develop more than they can laying on their backs and encourage them that children with Ds can lead a very happy long and productive life.  I'd love to also meet with the leader of the SDA for one of those chats and encourage her/him to release information about children with Ds so that those children can quickly and easily find homes abroad.  Of course that's a current dream... so many have come and gone... so many more to come I'm sure!
15) Where did you meet your spouse?  Day two of 7th grade.  He had foot surgery so was out day 1 and on day 2 I was the lucky (haha) one to carry his backpack around school since he was on crutches!  We didn't start dating until 10th grade when he again broke his foot and another teacher (different school even) chose me to carry his bag around!
16) What is something that those in blogland might not know about you?  I lived in Franklin, Massachusetts from the time I was 7 weeks old until I was 7 years old, and since that time I've lived in the same house except for 7 years (college/until I bought the house from my parents)
17)What States and Countries have you visited as an adult? States: Hmm.. as an adult.... Alabama, Arizona, Colorado, Delaware, Florida, Georgia, Illinois, Indiana, Louisiana, Maryland, Michigan, Minnesota, Mississippi, New Jersey, North Carolina, Pennsylvania, South Carolina, Tennessee, Texas, Virginia, West Virginia  Countries: Ukraine, Canada, US of A.
18) What do you do to relieve stress? Write/blog, read, walk, talk, pray
19) If you could change one physical trait about you what would it be? Wow, lots of generic questions then one that's actually kinda personal.  There's plenty of things that could change, but I'm pretty happy with me.  So let's just leave it at that.