Our Version of Normal

The escape artist has been contained!

2012-02-11T15:23:00.000-05:00

Naptime has been reinstated!

Lily's Groundhog Day

2012-02-10T13:52:00.000-05:00

Day 23 of 56 (wearing a full body spica cast)

Lily's Groundhog Day:

Wake up.
Immediately ~~demand~~ ask for the iPad.
Once in possession of the iPad, start saying "TV! TV! TV!" over and over again to get TV turned on.
As Mommy starts searching through the DVD collection, ask to help select a DVD "Help Help Barney Help"
When Mommy shows you a stack of Barney DVD's, just smile and don't pick one.
Mommy gets impatient and picks a Barney DVD.
Barney DVD finally begins after 2 hours of previews.
Immediately ask Mommy for an Elmo (fill in the blank) DVD (ie: Elmo doctor, Elmo potty, Elmo ABC)
As Mommy leaves room, "Be right back!" is stated from the occupant in the bed since that is Mommy's frequently used parting words.
Mommy brings up yogurt & juice to eat
After yogurt, Oats (Cheerios) are wanted asap.
Mommy fills bowl with Oats and places on bed within easy reach.
Multi-task by stuffing handfuls of Oats in mouth while playing iPad and watching TV.
Be oblivious of stray Oats littering bed
Bang loudly with bowl on side bed rail when needing a refill of Oats.
Mommy refills Oats and cleans bed off of stray Oats usually removing several under cast or in cast
Mommy changes DVD
Mommy attempts to brush hair while arms flail to ward off said brush
Proceed to watch YouTube videos and somehow find video of Spongebob cussing out Patrick.
Mommy appears after hearing over monitor Spongebob cussing out Patrick and erases history on YouTube account.
Mommy resets YouTube account to approved favorited videos.
"Chicken...French Fries" are stated by the bedridden (not stated but expected from McDonald's)
Chicken and French Fries (from McDonald's) arrive in room on a paper plate and are placed on bed within easy reach.
Cat chased from room for trying to steal chicken
Daddy changes DVD to Signing Time DVD
Daddy overhears Barney loudly competing on iPad with the Signing Time DVD on monitor.
Daddy turns volume down on iPad, but 2 seconds later volume has already been turned back up because someone is way to deft at their iPad and all it's settings.
Clanging bowl is once again heard on monitor.
Oats are refilled, as is "drink".
Play with "Get Well" balloons by flinging the weighted bottom tied to string of balloon off bed and yell with excitement every.single.time.
Ask for "Barney Red" multiple times during the day due to obsession with Barney Christmas DVD
Watch Barney Red DVD twice.
Get carried downstairs to lie in wheelchair and watch more Barney on TV for an hour or two.
~~Beg~~ Ask to go back upstairs as siblings loudly arrive home from school.
Stand awkwardly next to bed holding onto bed rail while Mommy rearranges 8 pillows and brushes off stray french fries and Oats.
Ask for "Barney Red" DVD again.
Mommy denies request and puts in a Sesame Street DVD.
Mommy reappears after overhearing on monitor the Spongebob Theme Song being sung in Spanish by pirate.
Mommy again erases history of watched videos and resets account to approved videos.
Watch Kidsongs DVD
Watch another Kidsong DVD
Watch a Teletubbies DVD
Clanging bowl is heard over monitor. Bowl is again refilled with Oats.
Back to watching a Barney DVD.
Mommy brings in special cereal dinner with happy pill crushed inside so Miss Bedridden stays happy throughout the night.
DVD watching and iPad playing continues until Daddy comes home from work (no matter how late) to work his Sandman magic (ie: snuggling) of getting a certain stubborn girl to relax and go to sleep.
After 15 minutes to 1 1/2 hours of playing with musical toys/stuffed animals, someone is finally comatose next to her already comatose Daddy until she stirs the next morning to repeat the previous day's activities.

Groundhog Day at it's finest!

Happy Birthday Grumpa!!! Love, Lily

Flashback Friday

2012-02-10T09:00:00.000-05:00

Lily is 4 years old in this picture and had only been walking for about 6 months. She was so proud of herself!

Exhaustion vs Beauty

2012-02-08T17:48:00.001-05:00

Too pooped to play!

Leo sleeps in our bedroom in the sitting area due to the fact we ran out of bedrooms and figured it would be easier to keep him with us instead of trying to find him a roomy. I just can't imagine why our teenage boys don't want to share a room with their baby brother. Can you? Well, our little daredevil has been escaping from his crib multiple times during bedtime and naptime for the past week. He then wakes with the roosters, climbs out of his crib like a pro, proceeds to turn on his light, then walk over to the door and starts loudly rattling the locked handle. So, between the late nights and the early mornings he's fairly exhausted as am I. We are now contemplating putting a crib tent on his crib, installing some kind of wall to wall gate system or putting up a wall and a door to contain him. I think we are going to start with the cheapest thing (the crib tent) and see how that goes.

~~~~~~~~~~~~~~~~

Our future model!

Don't you think Dasha should be in the next Target or Nordstrom ad?? :)

You can read about the little boy in the Target & Nordstrom ads here: Target Is ‘Down’ With Down Syndrome: 5 Things Target Said By Saying Nothing At All

and watch NBC's story on Ryan:

You Go Leo!!

2012-02-07T18:33:00.002-05:00

It may not seem like much, but we are celebrating today because Leo waved bye bye for the first time. That is a huge accomplishment for child who is nonverbal at almost 3 yrs old! To put it in perspective, the average age for a baby to wave is at 1. GO LEO!!! Mommy is so proud!!

Super Bowl XLVI in my hometown!

2012-02-05T11:00:00.002-05:00

Lavengoodcommercial.com

Matt just took this picture today (Sunday)!

No tickets? Work the Super Bowl!

I'm not much into football. I love the Colts, but pass on going to the games. I'm the kind of girl who likes to watch a quarter or two, the half time show and then leave. Matt and several members of my family, on the other hand, are die hard football fans and they watch football any chance they get. My mom has 4 season tickets for the Colt's and Matt and Riley go to quite a few of the games.

Well, when I heard the Super Bowl was coming to Indy, I thought that was pretty cool, but really had no intention of going downtown to check it out. I changed my mind after seeing multiple news stories, Facebook status updates and overall excitement in my little town (suburb of Indy) with celebrity sightings at the DQ, Subway and various local restaurants. Rumor's abounded of who was staying in houses close by (Will Smith, Adam Sandler, Ryan Gossling to name a few). I got swept up into the fervor and headed downtown late Thursday night to check out Super Bowl Village. And can I just say it was simply AWESOME!!! I loved every minute. Happy revelers were crowding the streets with Darius Rucker on stage with huge screen TVs everywhere providing a visual since getting anywhere near the stage was impossible. After standing outside of St Elmo's Steak House, stalking celebrities and only seeing sport's related ones (John Mara -Giant's owner and Troy Aikman), we wandered over to the zip line to watch the crazy people whipping by overhead. Amazing! Next stop was the Circle with the giant XLVI in front of the Soldier's and Sailer's Monument lit up beautifully! It was so much fun and everyone seemed to be having a blast.

Armed Fores Ice Sculpture

Lavengoodcommercial.com

It's been so fun to watch the news and also read how visitors are loving it here this week.

Hate To Admit It But Indianapolis Has Been Best Super Bowl Site Ever: http://bit.ly/z5Kfdh

N.Y., New Orleans eyeing Indy's Super Bowl playbook: http://bit.ly/zkBChD

Flashback Friday

2012-02-03T23:38:00.005-05:00

I'm going to start a new tradition on Friday's by posting old random photos of my kids, me, Matt, etc. Hope you enjoy! First off, I thought I'd show one of my favorites of Izzy. She'd been home about a month and was the sweetest little thing.

Izzy at 8 months

Leo's new stint

2012-02-03T15:31:00.000-05:00

Leo started Hippotherapy back up after a 9 month hiatus. He rode for about 7 months prior to this, but insurance became an issue and we had to stop last June. Hippotherapy is a great tool for children with several diagnoses including Down syndrome and autism. Here is what I copied off of the website:

Horses create a dynamic, three-dimensional movement that cannot be reproduced in a traditional clinic setting. The natural gait or stride of the horse, coupled with the animal's warmth, provides numerous benefits, including:

Improvements in:

muscle tone and strength
gross motor skills such as sitting, standing and walking
range of motion
coordination
endurance

Advances in:

balance/equilibrium
head and trunk control
body awareness
posture
mobility

Positive effects on:

eye-hand coordination
limbic system function related to arousal, motivation and attention
sensorimotor function
oral motor control, voice quality and vocal/verbal communication

When the horse's movement is transferred to the patient through hippotherapy, it produces a combination of sensory, motor and neurological input that we use to treat a wide variety of diagnoses.

The hour long session includes a 1/2 hr of traditional Occupational Therapy and 1/2 hr on the horse. Dasha has also started back up with Hippotherapy and just LOVES it! I'll try to film her soon.

(Sorry for the poor quality & filming, but Leo went a little haywire when he caught sight of me and I was trying to wave and wasn't paying attention to what my camera was doing.)

Her new do

2012-02-01T21:18:00.001-05:00

Day 15 of 56
We went to the orthopedic surgeon today and they did another x-ray of Lily's hips. They look good, but the doctor really wants to keep the cast on for the whole 8 weeks. He says it takes 6 weeks for the ligament to heal form being stretched and inflamed from the dislocation. He doesn't want to rush the cast removal because we want to avoid the big surgery (opening her up to cut the bone, put a metal plate in and screws in to fix her hip) if at all possible.

Once we got home, I couldn't stand looking at her hair anymore. We tried for a 1/2 hr to get the knots out, but it was just too big of a mess. Lily can't have a real bath until she gets the cast off so washing her hair is very difficult. So, I decided to cut it. I cut off about 6 inches of her front to a bob and then cut off the majority of her hair in the back leaving about an 1" or 2". It looks pretty cute in the front, but the back looks like I gave Leo some scissors and told him to have at it.

She still has her winning smile though..

It had to be done.

2012-02-01T15:47:00.002-05:00

I tried brushing out Lily's giant dreadlock, but it was just too difficult. She hates having her hair combed/brushed when there is barely a knot and these knots were all the way to her scalp in the back. So, I had to make the heartbreaking decision to cut her beautiful hair. I know her hair will grow back and I may seem silly, but it didn't make it any easier for me to do it. I'm still working on finishing it (she needed a break), but at least she doesn't have that awful birds nest of hair to lie on anymore.

My Miracle Lily

2012-01-29T21:08:00.001-05:00

I recently reposted 2 videos I'd made for Izzy and Dasha celebrating their adoptions. As my little boo is lying in her bed healing, I thought I should make a video celebrating her inner and outer beauty. When I heard Martina McBride's song "In My Daughter's Eyes" for the first time years ago, I was blown away by the lyrics. It's as if they wrote the song about Lily and me. She's my miracle and I'm ever thankful God gave her to me.

Lyrics:
In my daughter's eyes,
I am a hero,
I am strong and wise,
And I know no fear,
But the truth is plain to see,
She was sent to rescue me,
I see who I want to be,
In my daughter's eyes

In my daughter's eyes,
Everyone is equal,
Darkness turns to light,
And the world is at peace,
This miracle God gave to me,
Gives me strength when I am weak,
I find reason to believe,
In my daughter's eyes

And when she wraps her hand around my finger,
How it puts a smile in my heart,
Everything becomes a little clearer,
I realize what life is all about,
It's hanging on when your heart is had enough,
It's giving more when you feel like giving up,
I've seen the light,
It's in my daughter's eyes

In my daughter's eyes,
I can see the future,
A reflection of who I am and what will be,
And though she'll grow and someday leave,
Maybe raise a family,
When i'm gone I hope you see,
How happy she made me,
For I'll be there,
In my daughter's eyes

These two crack me up!

2012-01-28T18:17:00.000-05:00

24 and counting

2012-01-27T11:53:00.002-05:00

You can click on the picture to make it bigger.

My mom really wanted to ~~torture us~~ get a new picture of all 24 grandchildren together, especially since 3 babies were born since last April. This was taken at my parent's house Christmas day. My brother and his wife are expecting their first baby (a girl!) in March so it's going to be an outdated really soon. The tally so far are 10 boys and 14 girls ranging from 17 years to 4 months.

Valium and a dreadlock (Lily update)

2012-01-25T21:09:00.002-05:00

Day 8 of 56

Tick tock tick tock tick tock.

We took Lily to the Orthopedic Surgeon on Monday because we felt she needed to have her cast checked. She's been doing a bang up job ripping out the Gore-tex liner near her belly most likely hoping she can get the darn thing off. They x-rayed her and said everything looked good. They also taped her up a bit better, but he thinks this will be a weekly repair because she can so easily reach the inner part of the cast around her torso. We told him how Lily seems to be having an episode every day where she seems to be in a full blown panic attack. She starts to get all twitchy, thrash, cry, wail rocking back and forth with a crazed look in her eye. It is really reminiscent of when she wakes up from general anesthesia and is inconsolable. There is no reasoning or singing to calm her. It's usually lasts about a half hour per day before she calms down. It's heartbreaking. Last night it happened at 2AM and lasted well over an hour. Once she calmed down, she stayed awake until about 7:30AM. We woke her up at 1PM because we don't want her biological clock getting screwed up from all of this. I called the doctor and told them what happened. I then begged for something to help her. They prescribed Valium. We will now be giving her a crushed valium in her nightly meal to help her sleep thru the night and ward off whatever is causing her to flip whether it's anxiety, muscle spasms or both. We are praying this will get us thru until they allow the cast to come off.

Lily mainly speaks in one word utterances and learned phrases like "all done" "go outside". Lily is unable to tell me what hurts or how she feels. She can't tell me what to do to make it all better. It's always a guessing game and luckily I guess right most of the time. Right now though, she has regressed in her ability to communicate with me out of her frustration, anxiety and confusion. Her sensory processing issues are at an all time high. She's gritting her teeth constantly, twitching her body and using up any calming tool in her sensory arsenal to cope. An example would be taking a washcloth (she calls them "looks") and flipping it continuously, looking at it at every angle and chewing on it to keep in some sort of control. It kills me that I can't easily explain what's happened to her and why the heavy claustrophobic cast is pinning her down. I can't put a calendar up and mark the days off because again she doesn't understand time. All I can do is sing her favorites songs, provide the iPad 24 hours a day if need be and play every freaking Barney DVD we own hoping she stays fairly content until this nightmare is over. To top it all off, Lily has a giant dreadlock on the back of her head. It is quite the ordeal to wash and brush, let alone cut, Lily's hair. She likes her rituals and routines and when it comes to her hair, there's no veering from that routine. Hopefully, I will be able to fix her beautiful hair once the cast is off, but things aren't looking good right now. :sniff:

I'm grateful for any prayers said for Lily right now. Her world has been turned upside down.

***a mini update: After taking Valium, Lily had a restful night sleep! No signs of a panic attack or muscle spasms! Thank you God!!

Early signs of autism

2012-01-24T16:13:00.002-05:00

I'm been asked over and over what signs Reagan, Kaelan & Leo showed as toddlers that led to their diagnosis of autism. Since Early Intervention has been proven to be one of the biggest advantages for children with autism, I wanted to share early signs we experienced with our boys to possibly help facilitate others to seek help sooner than later. For us, it wasn't until all 3 were a year or older when the signs became apparent. Their first year, aside from the premature birth of Reagan & Kaelan was pretty typical. They smiled, made eye contact and met cognitive and physical milestones for the most part on time.

When Reagan & Kaelan were around 16 months old, I thought something was going on because they were so different from Riley at that age. I attributed the differences due to them being born 5 weeks early. I also thought maybe we'd neglected to entertain them as much as we had Riley with silly songs, patty cakes, peek-a-boos, reading books and other baby/toddler games because we were overwhelmed when they were born premature 5 days after Riley turned 2. So we overloaded them with engaging activities hoping to make up for lost time. But by the time they reached their 2nd birthday, Matt & I were still seeing too many unusual behaviors and still very little speech. Back in the dark ages before Google, I was actually able to find a check list online of "Symptoms of Autism". Shockingly, Kaelan had almost every single symptom. Reagan, on the other hand, had some symptoms, but not all. Overall, Reagan seemed stagnant in his social and verbal development. This led me to make a list for our pediatrician of each twin before their 2 year check up documenting their personalities, developmental milestones and quirks. I wanted to see what our pediatrician's thoughts were. I was pretty surprised when he acted like we were crazy, but we realized later he had a really old view on what autism was. Thank God I pushed him to order an Early Intervention evaluation by our state instead of waiting it out.

Two years ago, close to his 1st birthday, Leo also started showing early signs of autism. Because I knew what I was looking for, I saw some signs almost an entire year before Reagan & Kaelan. The benefit of recognizing the signs earlier meant Leo received First Steps (Early Intervention) a year sooner than his brothers.

Before listing the signs, I'm going to do a disclaimer. I'm not a doctor or a psychologist. I'm just a mom writing about what I saw with my 3 boys before they were 2 years old. All three are very different in how autism has affected them, but most of the early signs I'm listing, we saw in all of them. I'm leaving Lily out of this post because her first few years were so involved with health issues that I don't feel it's fair to include how we came to the decision (actually just recently) that she has a dual diagnosis of Down syndrome & autism. That will be a whole other post someday.

Early signs of autism in my boys:

1. When they were babies, all three had great eye contact and then they went out of their way to avoid eye contact (i.e.: turning their head looking anywhere, BUT at our eyes). Because I was really watching for this, Leo went from amazing eye contact to non-exsistent right around his 1st birthday. I noticed this trait more with Kaelan than Reagan when they were around 15 months old. Once we started pushing for better eye contact they almost acted bashful about giving it. Leo would squint like he was looking into the sun when he'd give us even fleeting eye contact.

2. They would respond to their name (turning to look when called and usually smiling) by the time they were 6 months old or so. Leo started acting deaf around a year and rarely responded to his name anymore after that. Somewhere around 18 months I remember worrying about the twin's hearing because they too never seem to respond to their name anymore. We had Reagan's tympanic's checked after an ear infection and he failed them so our ENT placed tubes in the ears to help with fluid buildup. Kaelan's tympanic's were normal at the time, but after several ear infections and then failing a hearing test ordered by First Steps, he had tubes placed a couple of months after he turned two. Even with tubes though, they still acted like they were deaf most of the time.

3. Little or no speech. Kaelan said DaDa, GaGa, BaBa when he was around 10-11 months old and then lost all speech. Reagan said DaDa and made lots of sounds/gibberish, but no real words that we understood. Leo makes the M sound and the E sound right now, but has no real speech yet and is considered nonverbal. It is important to note that children, who have Asperger's, don't usually have speech delays.

4. Loved to spin things or themselves. Kaelan could spin a hot wheel car like you wouldn't believe. He also turned little bikes upside down to spin the tires. They all three loved to watch things spin. Reagan & Leo liked spinning themselves around and around and never got dizzy.

5. Clapped really late (loved to watch patty-cake, but would not do without hand over hand help)

6. Took a long time to learn names of body parts. Leo still doesn't know these at almost 3 years old.

7. Took a long time to wave bye-bye. Leo still doesn't do this.

8. No pointing. Instead, they would use their eyes to point by looking intently what they wanted. Hard part was guessing what they wanted because if I was wrong they would scream bloody murder or cry hysterically.

9. They all made sing song sounds and lots of screaming whether excited or upset.

10. Completely ignored or were indifferent to other children & adults. Parallel play to the extreme.

11. Covered their ears a lot because lots of sounds bothered them.

12. Very picky eaters, usually had favorite foods and avoided all others especially squishy textures.

13. They loved to carry multiple toys or objects in their hands and God forbid they should drop something or you try to take something away. I swear this is a precursor to OCD behavior or future obsessions ;)

14. Didn't play with toys appropriately. No imagination at all. Kaelan loved to line things up. Reagan preferred magazines and books. Leo used to eat all of our board books.

15. Took a long time to comprehend simple phrases like: "Do you want a drink?" Do you want to eat?" "Where's Mommy?' "Where's Daddy?" and to respond appropriately.

16. Walked on tip toes (Leo & Reagan) and jumping up and down in place while flapping their arms. Right now, Leo loves to watch his fingers wiggle.

Again, these are signs we saw in our boys as toddlers. In my opinion, the first 3 were my biggest clues. All children have quirks and it doesn't mean they have autism. You can even line up 10 children with autism and they will be nothing alike. Autism manifests itself differently and what may be an issue or behavior with one child may not affect another at all. The most prevailing traits of autism outwardly seen with all of my boys would be their social skills, speech and sensory processing. Knowing how far Reagan & Kaelan have come, has given me the confidence to know that Leo has limitless potential. If you have any questions or see some signs in your child, my advice is to talk to your child's doctor because the earlier intervention is started the better. Studies show children who have therapies early on seem to do better than their peers who may be diagnosed later.
http://www.wrightslaw.com/info/autism.index.htm

http://www.earlysignsofautism.com/

Toot!

2012-01-23T14:23:00.001-05:00

This was Izzy and Dasha's first experience with "Noise Putty"

Mr. Basketball

2012-01-21T16:29:00.001-05:00

Riley shooting and making a 3-pointer

Riley with his Grandmothers

Riley with his Grandfathers

Riley adores basketball. He's been playing since he was in first grade and we were thrilled when we heard about this league he's been playing in the past couple of months for high school kids. It's frustrating being in a school system that is so large that kids have a very hard time getting on team sports like basketball. Riley's height became an issue as other boys shot up, but now that he's almost 5' 11", he's definitely not the shortest anymore. I just wish they ran the program year round because it's fun seeing him so happy doing what he loves.

Rolling with the punches

2012-01-20T17:18:00.002-05:00

Day 4 of 56

Lily's 2nd resting spot. Leo thinks it's a trampoline. Uh Oh...

Matt thanked his Facebook friends yesterday for all their kind thoughts, prayers and well wishes for Lily and he added how Lily rolls with the punches better than anyone he's ever seen. I could not agree more. I've watched her go thru so much over the years and she's always bounced back. Pinned as if paralyzed from the waist down, Lily seems to be accepting her 8 week fate. She's flashing her beautiful smile, acting fairly content all things considered and is back to doling out her phenomenal hugs.

She's handling it better than I am.

Home bittersweet home

2012-01-18T22:22:00.001-05:00

Day 2 of 56

Please keep praying for Lily to adjust to her new horizontal world. After a traumatic ride in Matt's truck lying flat on the truck's seat bench strapped in with a harness and 2 seatbelts, we've decided we won't be taking her out unless it's absolutely necessary. She didn't care for her reclining wheelchair, but hopefully we can get her over that so she can come downstairs and be with everyone. We tried putting her on beanbags, but she was just too upset. We will try them again tomorrow.

I seriously don't know what we'd do without our iPad, portable DVD player and of course a TV. It makes my skin crawl just looking at her legs & hips encased in that plaster frozen in position trapped. I've ordered her a Castcooler per a friend's suggestion to help keep her dry and cool under her spica cast, especially since she doesn't really sweat and I'm worried she is going to overheat. Hopefully, it will be calming for her too.

We are taking it one day at a time.

And this too shall pass.

2012-01-17T21:40:00.004-05:00

I'm sure you'd all love an update on my sweet angel, Lily. It's been an incredibly draining day, but we have good news and not so good news. First off, I want to thank everyone for praying and thinking of Lily. It means everything to me.

So, we arrived at the hospital this morning with Lily oblivious as to what was to about happen to her. When it was time for her to go to her surgery, they pushed her on a gurney with her iPad tuned to Barney all happy and excited watching the nurse blow bubbles for her. I, on the other hand, was a mess. It just never gets any easier to see one of my babies go off to surgery. Lily is especially hard because she's dealt with so much in such a short time and post op with Lily, from previous experience, is usually a nightmare.

After an hour or so, the orthopedic surgeon came out and told us he was able to put her leg back into the hip socket manually without opening her up (this was the good news). He also made sure that it held because there is a risk, with her lower tone and looser ligaments, it could come right back out. He then put her in a full body spica cast (see picture below) to hold her hip in place and she has to wear it for a full 8 weeks (the bad news). The care for this cast and the limited things Lily can do while in it freaks me out a bit, but it has to be done. MARCH 13th is the possible removal date and that sounds so incredibly far away. For Lily, this means she will be using a reclining wheelchair, a bean bag, the floor or a bed. No chairs, no carseats for 8 weeks. No toilet, no bath (except sponge) and no normal clothing. I still haven't determined what we will do about school or therapies. We need to adjust to our new temporary normal and get a feel for what is doable and what isn't. I'd ask that you continue to pray for Lily. She's having a very hard time accepting and dealing with all of this and it breaks my heart to see her so distressed. Singing to her and holding her hand are about the only things really calming her right now. I'm hopeful once we get home in the next day or so, she will get back in her comfort zone, start to relax and we will see her beautiful smile again.

She also needs prayers that her hip and leg stay right where they belong once her cast comes off because if they don't we will be forced to do the surgery we avoided today where the doctor has to cut her bone near the top below the ball, place it in the hip socket, use a few screws, a metal plate (that would need to be removed a year later), shorten her ligaments and do the spica cast all over again.

Right before they took Lily to the OR

Lily in recovery-not happy :(

Barney & the iPad are better than morphine

Please pray for Lily

2012-01-16T18:15:00.001-05:00

Tomorrow, Lily will be having surgery because she has a dislocated right hip. Surprisingly not from a trauma, but most likely due to taking Versed (see previous post) for her dental cleaning. I believe it caused her muscle tone, joints, ligaments and tendons to go too lax which led to her leg dislocating from her hip. One of the byproducts of having Down syndrome is low tone, loose joints, lax ligaments & tendons. Lily is quite the bendy girl appearing to be what most would refer to as double-jointed. I've written about hypertonia (double-jointed) here. She has on occasion had her hip lock up and usually she could push it a certain way and fix it on her own. We saw a Pediatric Orthopedic Surgeon for this issue about 9 months ago and he wasn't too concerned because it always was very short term and never seemed to cause her any pain.

After we got home from the dentist on Friday, it took her a long time to be able to stand and walk. I also noticed her hip kept locking up and at first she was able to unlock it every time. Then after lunch on Saturday, she stopped being able to unlock her hip herself and couldn't walk again. She couldn't bear any weight on her leg and kept holding it up by her waist most of the time. Thankfully, she hasn't appeared to have any pain. I called her doctor yesterday when she still wasn't able to stand up or walk and he had me bring her in this morning to x-ray her. The x-ray showed the ball of the top of her leg next to instead of in the hip socket. The x-ray above is kind of what it looked like except it is her right leg. They are going to put her under general anesthesia tomorrow at 12:15 and her doctor is first going to try to put it back in place by manipulating it from the outside of her body. If that works, the doctor will then check to make sure her ligaments, etc. hold it in place. If they have become too lax or stretched then he will have to surgically go in to shorten them so this doesn't happen again. Another scenario is the doctor will be unable to get the ball of her leg to go back into the hip socket. If this happens, then he will have to cut the leg bone and place it where it belongs plus possibly repair or shorten the ligaments, joints etc.

All three scenarios include Lily wearing a body cast for 6-8 weeks. I'm feeling completely overwhelmed by the enormity of it all for her recovery. I'm not sure whether she can sit up with the cast or how we are going to deal with going potty, will she be able to go to school and ride in her carseat. I'm clueless and didn't think to ask about these details today. I'm especially worried about how Lily will handle all of this. She is NOT a good patient and usually flips over any and all things medical. She is justified from all that she has endured in her 8 years. She had open heart surgery when she was 4 1/2 months old, eye surgery at 16 months, Tonsils & Adenoids removed at 6 1/2. She's also has had multiple pokes, prods, echos, x-rays and scopes over the years and I hate seeing her so traumatized.

This aspect of Down syndrome is the ONE thing I wish I could change. I wish I could wave a magic wand and cure her of every health issue that is a direct result of having an extra chromosome.

I believe in the power of prayer and I'm grateful for any prayers said for my sweet baby girl.

Not what I expected

2012-01-14T17:19:00.000-05:00

Yesterday, I took Lily to our pediatric dentist to get ~~tortured~~ her teeth cleaned. Over the years, her anxiety has increased to an unmanageable level. She kicks, hits, struggles, wails & cries while the dental hygientist tries to clean her teeth. It is horrible to witness Lily so terrified especially when we literally have to pin her down. She is in fight or flight mode and it gets worse every time we go. Our dentist suggested sedation for Lily over a year or so ago, but we held off. After discussing it with our dentist (who we really do love) again after the her last cleaning, we decided to go ahead and try it this time. They called it a conscious sedation. I guess I didn't listen very well or maybe they didn't explain it very well, but I thought she would go to sleep and we would all just sit there calmly watching the hygientist clean her teeth thoroughly. Hey, we might even actually get an x-ray or two.

That's not how it went down. With Lily's heart history, her cardiologist requested they do a pulse ox during the entire procedure to monitor her. Lily also had to have a massive dose of liquid antibiotics (16ML's or about 3 tsps) an hour before the procedure on an empty stomach. Once we arrived, they took us to a room to check her weight, blood pressure and pulse ox. Now, if you know Lily at all (and they do), you would probably assume if she flips out over a teeth cleaning then she probably would flip out about having her blood pressure taken. No matter how nicely you word it ("it wants to give your arm a hug"), she's not going to cooperate. So we get her nice and revved up before I even have to attempt to (~~force)~~ get 13 ML's of grape Motrin and Versed mixed together down her throat. She wouldn't have it. So, to distract her I took her to the potty and then she was calm enough to gag down the drugs. They told me it would take 30 minutes or so for the medicine to kick in so we sat in the room and waited. Within 15 minutes, Lily started to lose her balance. She started falling face first onto the floor looking completely drunk. I tried to get her to lay back on their little bean bag, but she just kept trying to sit up and failed miserably. Her low tone went from extreme to no tone at all. She looked slack-faced and blank for the most part. Her speech was extremely slurred. It was pretty disconcerting to me to watch. They finally came to take us back to the room about 40 minutes or so later. I had to carry her 53.6 lbs of dead weight to the room and then lay her on a papoose board that is a nice way of saying modified straight jacket. I was okay with the papoose board because it kept her on the table, but what I wasn't prepared for was how Lily was still awake, still freaking out and hysterical. The only difference in my opinion was that she was weaker and more likely to aspirate on her saliva in her prone position. I asked them to raise her head (which they did) and then sang every song I could think of to help try to calm her down. After what seemed like an hour, they finally finished and I lugged her to the waiting room to put her coat on limp arms with everyone staring at her in horror. Definitely NOT a good scene for little kids to witness.

Once we were home, Lily couldn't walk and barely could sit up. Her hip kept locking up (meaning she can't straighten her right leg unless she unlocks it herself) and it took several hours before she could walk normally again. It was one of the worst experiences I've had to deal with and I won't be repeating it. I'm thinking we will just take her in and deal with her fighting everyone once a year in the office unsedated. Then possibly schedule several little procedures in the hospital (blood draw, ear cleaning, thorough teeth cleaning, x-rays, etc) and put her under light general anesthetic similar to what she had when she had an upper GI done last year to get her other cleaning done.

I seriously hate anxiety and what it does to my beautiful sweet girl.

A girl named Leo?

2012-01-09T13:01:00.015-05:00

At least the medical profession seems to think so since every time we meet a new nurse or doctor, they refer to Leo as a she. I also have someone comment on my pretty little girl at least once a day no matter how boyish his clothing is. I wasn't ready to do the full plunge into big boy haircut, but I compromised (mainly because it's so hard to keep clean) and cut off about 3 inches of curls. :sniff: Why do all my boys get the ringlets as babies that I HATE to cut off and all of my girl's get stick straight hair that's wispy?

BEFORE:

AFTER:

*As you can probably tell by Leo's teeth, I think it's time to start limiting his pacifier to crib time only. It's been a lifesaver letting him use it for so long because he enjoyed eating/destroying books for so long. Riley and Kaelan used to have the exact same smile. :)

Feeling a bit lost in a "perfect" world

2012-01-08T12:42:00.008-05:00

Do you ever get the feeling like you have a giant booger on your face or maybe forgot to put pants on before leaving the house? I do. I catch people staring or even gawking at us every.single.day. I'm not talking about short little covert glances, but big wide eyed "OMG, would you look at that family!" stares. There are days that I feel like we are the accident in the road and everyone is rubbernecking to get a peek at the gore.

Sometimes, it's for the sheer size of our family (which by Dugger's standards, we are kinda small). Other times, it's the "Down's" element. Many times, it's because one or more of the boys are doing something obnoxious, fighting with each other or being disrespectful to us (have you ever tried to rationalize with someone on the spectrum?). There's also the adoption element since Izzy sticks out with her striking jet black hair, black eyes and mahogany skin. And wait, we can't forget Leo's pepperoni sized birthmark on his head because it definitely gets it's fair share of horrified looks.

Some think I'm being paranoid or over sensitive and maybe I am, but if you constantly feel the stares and catch people whispering or even pointing at your family, you get sick of it. You want it to stop. C'mon people, we are not a circus act.

Another thing that just kills me are the questions or comments. "Are they all yours?", "Where'd she come from?", "Where'd you get her?" (usually said right in front of Izzy), "Does she have a little Down's?", "OMG, what happened to him?", "Are you done?", "Better you than me", "I could NEVER do what you do?", "Wow, you must be so patient.", "How much did it cost?", "Why is he/she doing that?" and the ever favorite "You sure have your hands full."

Or, they want me to diagnose their friend's friend's friend's child with autism because they act bad, weird or don't talk and they are 2. I know I should probably have an honorary PhD in diagnosing autism since I have 4 on the spectrum, but I've come to learn that most parents don't want to hear from their friend, sibling or friend's friend that there could possibly be something wrong with their child. I'll leave that conversation up to their pediatrician.

And you know the part from "Welcome to Holland" that says "But everyone you know is busy coming and going from Italy... and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."" Lately, I think this hits me the hardest. While we are immersed in the special education world with IEP's, guided study halls, and therapy, it's been very bittersweet hearing about how so in so is picking colleges to apply to, or how their child is getting a C in something, or the 4 sports their kids are participating in this weekend that they have to watch, etc. When I'm home doing our thing, I don't really think about it much, but when we are with friends, family or just making conversation with people, I realize how vastly different our world is to someone who's kids are considered typical. It's a hard reality and I try not to dwell on it, but lately the thoughts creep into my head a lot. Things people take for granted like boyfriends/girlfriends, college, jobs, driver licenses, marriage, children/pregnancy, friends. All these life experiences are expected by most, but may never ever happen for some of my kids. It's something I thought I'd come to terms with, but lately as the boys have gotten older I'm reminded how much harder it is for them to obtain things like a driver's license, college degree or even a job. I can't imagine how I'm going to feel when Lily and Dasha reach their teenage years. I need to rethink and recreate a new mindset so vastly different from what was my "normal" growing up that matches my kids abilities and wants. I need to be at peace with this so I can guide and help them be happy and successful in life no matter what comes their way.

Going down memory lane -Our adoption videos

2012-01-07T12:44:00.005-05:00

I was cleaning (never ending in this house) and found our DVD of Izzy's adoption video I made 4 1/2 years ago. It has been so long since I'd last watched it. Time sure does fly. Izzy has been home since July '07 and Dasha since October '08. I can't believe how much they've grown and changed. I showed Izzy and Dasha their videos and they loved them. In case you'd like to reminisce with me, here they are:

Dasha:

Izzy:

Solemnity of Mary, Mother of God

2012-01-01T08:00:00.003-05:00

Happy New Year!! I thought posting Matt singing Ave Maria for the Feast of the Blessed Virgin Mary, a Catholic Holy Day, would be a nice way to start out the new year on my blog.

O Holy Night - Merry Christmas everyone!!

2011-12-23T23:15:00.004-05:00

I finally was able to talk (aka- nag) Matt into letting me record him singing "O Holy Night" because it is my favorite Christmas song and I wanted to share how beautifully he sings it.

School pics!

2011-12-21T09:56:00.001-05:00

Birthday girl!

2011-12-04T18:21:00.002-05:00

& a blurry one I couldn't resist

Wishing a Happy 5th Birthday to my sweet & spicy Izzy! Today, I especially think of Izzy's birth mother and hope she has peace. I wish she could see how beautiful and amazing our (her & my) daughter is and know how much we adore her.

If Every Day Was Like Christmas

2011-11-29T22:26:00.001-05:00

Matt channeling Elvis. I had fun finding Christmas pictures from every state to make the video. Hope you enjoy it! Merry Christmas!!!

Learning about Hypothyrodism

2011-11-15T16:03:00.008-05:00

Last month, Dasha and Lily had their yearly check up at the Down Syndrome Clinic. It involved seeing a few specialists and blood work. We received a call telling us that one of Dasha's thyroid levels is moderately elevated and she needs to start taking a drug (Levoxyl) to control it and start seeing an Endocrinologist to monitor her levels. This wasn't a huge surprise because when they did her initial blood work when she first came home, she was slightly elevated. I already knew that there is an increased risk for Hypothyroidism due to having Down syndrome, but was surprised to read that experts believe it could develop in up to 50% of the Down syndrome population during their lifetime.

I went a Googling to see what this possibly meant for Dasha until we meet with the Endocrinologist. Hypothyroidism means low thyroid function. Interestingly, the symptoms of hypothyroidism are very similar to features of Down syndrome. They are decreased growth rate, constipation, lethargy, decreased muscle tone and dry skin & hair. That pretty much covers Dasha & Lily. I haven't checked Lily's thyroid levels in a few years because she is a complete nightmare when it comes to anything medical. We will have to sedate her to get it done so we are trying to decide when another procedure is needed and coordinate the doctors & blood draw. Complications of Hypothyroidism are delayed growth & problems with mental development if not treated.

I've definitely noticed that Dasha has slow growth. She is tiny for an 8 1/2 year old. We used to think it was orphanage life, but now wonder if her thyroid has more to do with it. She wears a size 5/6 in clothing. She weighs 45 lbs. and is 42" tall. Izzy is catching up to her and she is almost 4 years younger. Lily is at least 3 inches taller than her and even Lily is short for an 8 year old. The most noticeable thing is Dasha doesn't grow out of her shoes at a normal rate. She has gone from a shoe size of 6 1/2 to a size 8 1/2 TODDLER in 3 years. Her 8 1/2's are still big on her after almost a year. Izzy was wearing the same size shoe as Dasha when Dasha came home and Izzy now wears an 11 1/2. We've checked her growth chart and she's growing, but very slowly. I'm hoping Levoxyl will help get her body back on track. It's been a thrill getting the pill down her. They have all sorts of rules for how she is supposed to take them. They'd prefer her to swallow the pill, but that isn't happening anytime soon due to her tongue thrust and getting her to understand she shouldn't chew the pill. So for now I'm smashing the pill, putting it in a small amount of applesauce and giving her a sip of water (she tends to choke on water). Technically, I guess we are supposed to wait an hour before she eats breakfast, but I'm only waiting 30 minutes due to school. Hopefully, this will be okay.

She has been on the medication for over a week and I've noticed her energy levels are up, but that may be due to the fact that she also had strep (no symptoms) and was put on antibiotics for that the same day she started Levoxyl. Sadly, I think a tonsil & adenoid surgery is in our near future as well. :(

Wordless Wednesday

2011-11-09T01:09:00.000-05:00

Reece's Rainbow 2011 Angel Tree

2011-11-08T12:30:00.001-05:00

See the beautiful faces below? All of them are orphans and they need a family to love them.
Would you please consider donating to a child's adoption grant on Reece's Rainbow? These orphans have no hope, no future unless someone adopts them. All of them, because of having Down syndrome, will be institutionalized sometime around their 5th birthday. No matter how high functioning they are. It is a grim reality for all of them.

With adoptions from most of these countries costing well over $20K and some even go as high as $40K in some areas of Eastern Europe, there is a urgent need for donations. The fact is there is never a shortage of families willing to adopt, only a shortage of funds needed to adopt.

When you donate $35 dollars, you will receive a beautiful ornament with the chosen child's sweet face on it, but really any amount, no matter how small, would be beneficial. So click here: Angel Tree Link and find your Christmas Angel.

Grab This!

The good, the bad & the ugly..Halloween '11

2011-11-06T23:39:00.008-05:00

I'm sure I've mentioned before how much Matt and I dread taking pictures of our kids together (Do you see the above blog picture? It's over a year old and is photoshopped). It has NEVER been an easy task and I'm always amazed when any shots turn out well. When you add costumes into the mix, you know it's gonna get messy. Dasha & Izzy are quite photogenic and as long as they don't throw out a pained faux smile or get caught up in the frenzy of their siblings, we can get some really good shots of them. Lily & Leo, on the other hand, are horribly hard to get good pictures of and adding costumes was like throwing ice-cold water on them. Panic ensued. I admit I didn't give them much warning because it's really not like they understand, care or even want to be dressed up as a cartoon character. I stripped them down, threw on the costumes and hustled them out the door. Lily basically went into fight or flight mode until we got her outside into the cool air and then BAM she calmed down, looked around and just went with the flow. I don't think she cared one way or another that she was Dumbo and she really couldn't have cared less if she trick or treated, BUT it is important to me that she participate in family/holiday events like this. Otherwise, she would sit in the house and play on the iPad all.freaking.day watching YouTube videos of Barney (in Spanish). Leo, on the other hand, refused to keep Pooh's head on and cried every time I started walking towards anyone's house. Sooo, we watched from afar while Matt escorted the 3 girl's up to trick or treat. Izzy & Dasha LOVED every second and got lot's of compliments (and candy). Surprisingly, Lily did well too and actually said "Thank You" multiple times. That is a huge improvement for her! Last year, we finally got her to walk up to doors without putting the brakes on and crying so we are getting there! Maybe next year, we will get to hear a "trick or treat" come out of her mouth.

FYI: Lily's and Leo's costumes were costumes the boys wore when they were little. I got Dasha's costume off of eBay and Izzy's costume is the one Dasha wore 2 years ago that I bought from the Disney store. Plus, if you were wondering where the big boys were, they decided they were too old to trick or treat (it helped I bought extra candy)

How to Be The Village

2011-11-06T15:55:00.006-05:00

Again, another perfect post by Jen Hatmaker re: adoption.

How to Be The Village

Note to self:

2011-10-30T23:24:00.005-04:00

Never assume a 2 year old can't open a Hershey Bar just because he carried it around in his hot little hand for well over an hour without ever trying..

3 years ago today..

2011-10-30T19:08:00.006-04:00

a ray of sunshine entered our home and has been brightening up our lives ever since.

Angels Unaware

2011-10-22T11:51:00.001-04:00

The gift I give to you will not be made of gold,

but it's beauty is more splendid and precious to behold.

The hands of man could not defile this gift so pure and sweet

for it's constructed by a higher being with whom man cannot compete.

The very presence of this gift can warm the human heart.

The joy it brings is heavenly, and never will depart.

I'll give you mountains of laughter, but there'll be some valley's too.

I will not leave you comfortless...I'll be right here for you.

Not everyone can have this gift. You are chosen ones...you see.

I looked upon the earth below, and saw that YOU would be.

I will give you extra strength which you will need to tarry;

and if you'll call upon my name, your burdens I will carry.

There will be ones who don't understand, they have not eyes to see

the beauty of this special gift; given to you, from me.

Lift up your arms, receive with joy the special gift I bear.

My chosen ones, I give to you an Angel...unaware.

-Teresa Hatfield

My little firefighter

2011-10-21T08:40:00.004-04:00

On October 30th, we will be celebrating the 3rd anniversary of the day Dasha arrived home. I still sometimes look at her and catch my breath because I can't believe how lucky we are to be her parents. She is simply amazing and we are blessed beyond measure.

Wordless Wednesday

2011-10-19T13:31:00.002-04:00

Down Syndrome Creed

2011-10-16T22:32:00.003-04:00

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

I think she has Down syndrome...

2011-10-13T09:30:00.001-04:00

October is Down syndrome Awareness month and I wanted to post one of the first things I read in the hospital after Lily was born.

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

I remember sobbing the first time I read "Welcome to Holland" and even though the memory is bittersweet 8 years later, I will never forget the crushing devastation I felt the moment I heard Matt say "I think she has Down syndrome." There really is no way to prepare or shield yourself from the onslaught of shock, despair, fear, anger and disappointment coursing thru you, whether you find out prenatally or after the birth of your child. It's hard for me to think back to Lily's birth let alone write about what I felt those first few days. When they handed Lily to me swaddled in a blanket all I could see and think when I looked at her was Down syndrome. I was so angry at everything especially God. I remember ranting at him asking him why didn't he just give us another child with autism since we were already knee deep in autism. I didn't want to learn about Down syndrome.

After being moved to a room, I was lying in my hospital bed facing away from Matt and Lily (who we hadn't even named yet) crying. I still couldn't bear to look at her and was avoiding holding her. Matt walked over to the side of the bed I was facing carrying Lily. He leaned down and said to me "Liz, look how beautiful is. I love her so much already". He then handed her to me, even though I resisted. And as I stared at her tiny face, I recall feeling a sense of calmness wash over me. I believe in that moment, I fell in love my daughter. How could I have anger about someone so tiny and helpless. She needed me so much and the funny thing was I needed her too. As the days & weeks went by, Lily whittled away my bitterness every time I held and nursed her. She soothed my rage with her gentle smiles and sweet little moon eyes. She silenced the voice in my head that kept asking "Why me?!" as she snuggled next to me in bed. She helped me find peace by just being herself, Down syndrome and all.

I know it's hard for some to understand or even believe me when I say I wouldn't change Lily. Having an extra chromosome makes Lily who she is and we adore her. Obviously, it isn't always easy. There are even days that I could swear her soul sister is Helen Keller (think before Anne Sullivan) BUT, I can also say (and with some authority since I have 2 sporting that extra chromosome), they are living proof of angels on earth. Lily didn't ruin our lives, she enriched it and I now thank God everyday for letting us be one of the lucky ones.

Fake Family

2011-10-01T14:42:00.001-04:00

Another great blog post from Jen Hatmaker ("After The Airport").

Fake Family

After the Airport

2011-09-07T14:15:00.001-04:00

A MUST READ for all adoptive or future adoptive parents.

After the Airport

This is a VERY HONEST blog post about adoption that is beautifully written.

Great Grandpa

2011-08-21T16:37:00.004-04:00

In June, we finally were able to travel to Ohio to see Matt's grandfather (who is 91 years old and our only surviving grandparent). I'm ashamed to admit that he had never met Dasha or Leo until this visit. Lots of excuses...work, illness or just plain old life got in the way, but I'm so happy we finally made it.

Great Grandpa "Riley" is our son, Riley's, namesake and it always gives me a little thrill to see the two of them together and talking. I just love the picture of the two of them below. The rest of the kids were a bit shy (except Dasha), but still friendly and we snapped a shot of each of them with Great Grandpa. Dasha acted like she'd just seen him last week instead of just meeting him and was more than happy to dole out hugs to everyone there. It was a special day and it was a reminder to us how important it is to make time to do things like this instead of getting caught up with work, therapy, school etc.

New York Buddy Walk/NDSS Times Square Video

2011-08-08T14:39:00.007-04:00

3 years ago, I submitted Lily's picture to be a part of the NYC Buddy Walk -NDSS Times Square Video and her picture was chosen, but we didn't get to go because we were in Ukraine for Dasha's adoption. :) The following 2 years, their pictures were not chosen.

This past May, I again submitted 2 pictures of the girls and I'm excited to say both pictures were picked to be a part of the Times Square Video. I'm bummed though because Matt is booked to work that weekend (9/24) and I don't think I will be able to swing it. If anyone is attending, I would LOVE and deeply appreciate it if you could take pictures of my girl's when they appear on the MTV plasma screen in Times Square and send them to me. :)

Summer Sweetness

2011-07-18T12:10:00.006-04:00

"Hollywood Ending"

2011-06-25T09:50:00.011-04:00

I know I've mentioned Matt is an incredibly talented musician (singer/keyboardist) who performs live locally mostly playing cover music, but I've never really shared how his biggest dream is to be a songwriter. Several years ago, he released his first album (1000 copies) when the twins were a year old before the iTunes Age. I shared one of the songs (here) a while back that he wrote, recorded and gave to me on my birthday during our freshman year in college when we apart. Over the past several years, life (aka children) took over and his songwriting took a backseat. Last summer, he finished creating his latest work and went into the studio to record the album "Hollywood Ending." You can listen to each song in it's entirety above and if you'd like to purchase a song or the album, you can find it on iTunes or Amazon. Just search for Matt Roush or click on the link: iTunes or Amazon.

Please note: You won't be able to see the media player on Google Reader so if you want to hear the songs click on link: Our Version of Normal

Baby Avary by Jessica Strickland

2011-06-12T13:06:00.006-04:00

I had to share a poignant video (that will definitely make you cry) my sister sent me about a baby girl named Avary who had Trisomy 9. It is a beautiful photographic tribute to her brief yet cherished life on earth. The following is what Jessica Strickland (her website), who was the photographer,wrote on her blog:

I had the incredible opportunity to photograph the birth of sweet baby Avary! She is a very special little girl who was born with Trisomy 9, a rare chromosomal disorder and she was only able to grace us with her presence here on earth for a short but sweet time. She is now perfect and resting in the arms of our Lord and Savior, Jesus Christ. She was born into one of the most incredible, wonderful families…I can’t say enough about them. Reidy Family….watching you welcome precious Avary into the world and then gracefully and beautifully hand her over to Jesus in such a short amount of time is one of the most powerful testimonies that I have ever seen. I have no doubt that others have been and will continue to be equally effected. The Lord must be smiling down upon you as He now holds your sweet Avary and sees how you are truly making a difference for Him through your faith, steadfast hope and grace in this heartbreaking time. That is truly a mark of what it means to be a Christian, the kind we all aspire to be… and I hope that you will reflect on the kingdom work that is being done through Avary’s short by sweet life when the journey gets difficult and your hearts are heavy. I send you all of my love and prayers…. Avary will be in my heart for the rest of my life. What a special, powerful day this was….an such an honor for me to capture…

*please be prepared with tissues before proceeding with playing the slideshow below*

View on ExposureRoom

Free Apps for Autism Awareness Month

2011-04-16T10:00:00.017-04:00

We gave Leo an iTouch for his birthday 2 weeks ago (so I didn't have to share my iPhone anymore) and I am amazed with how well he is using the apps. He is quite the swiper and tapper. He knows how to change from app to app and really learned this all very quickly. The girl's are also loving the apps and try to steal his iTouch all the time. I have an Ipad that I received for Christmas, but I felt the size of the iTouch was a better fit for little hands, less likely to be dropped or broken plus cheaper. I also think the iTouch will be a great tool for the youngest 4 to help with their speech especially articulation, expressive and receptive language skills. Leo is still nonverbal and I'm really hoping this will help trigger speech for him. The game and song apps are an added bonus and a great distraction during doctor visits, and when we are eating out (Leo does not do well at restaurants). I feel we are getting educational benefits instead of just mindless gaming.

I wanted to share all of the great apps that he loves plus let you know that Kindergarten.com has made all of their ABA apps free this month for Autism Awareness month and they are great for children especially ones who have developmental delays. If you go to the iTunes store and search kindergarten.com, you will find 24 FREE apps that include flash cards and problem solving type apps that are very speech based.

I took a screenshot of what is available from kindergarten.com. Please click on the picture to enlarge.

Other apps we have bought or downloaded for free are:

Peekaboo Barn (they all love the Peekaboo line and they are great for toddlers)

Peekaboo Forest

Peekaboo Wild

Voice Toddler Cards -Talking flashcards

Thomas the Game pack

Toddler counting

Signing Time ASL - Sign Language (probably most favorite app of Dasha and Leo)

Tapping Zoo

Preschool Adventure

Barney

Teletubbies

Elmo's Monster Maker (this is really pretty cool- I think my kids just love the video of Elmo talking)

Teach Me Kindergarten

First Word Sampler by Learning Touch

Talking Carl (he repeats everything you say-Dasha loves this one)

Wheels on the Bus by Duck Duck Moose (Leo adores this one too)

Old McDonald's Farm by Duck Duck Moose (there are several different songs to buy)

Sound Shaker

Photo Touch Farm Animals

(You can type in the title and find fairly easily)

Here is what Leo's iTouch looks like with all of his apps (the screenshots are from my iPhone, but it is identical to his iTouch)

The "short bus"

2011-04-05T14:56:00.010-04:00

There are a lot of people out there trying to stop the use of the "R" word. Campaigns and blog posts are trying to make the general population understand how hurtful the word is to the special needs community. Before Lily, I myself used that word without thought.

I've never thought of Reagan and Kaelan as "mentally retarded". Even when they were tested at 3 by the school system and the results put them in the mentally retarded range with an autism diagnosis, I just blew it off as crazy talk because they were both so "brilliant" in so many ways. Reagan has always been referred to as a little Einstein or the next Bill Gates.

Lily was the eye opener for me. I couldn't bear thinking of her as mentally retarded. The reality was I couldn't envision what mentally retarded meant for Lily. I just knew that it sounded horribly scary and overwhelming. Now that Lily is 7 years old, I understand what being mentally retarded means for her. It means she might learn things or concepts slower than her peers and needs more repetition. It means she might not care about writing her name or drawing/coloring. It means she might struggle to show what she is capable of and we just have to figure out a way to tap into her abilities. It means she might be misunderstood more often than not because of speech issues. It means she might process information differently and therefore react differently. Lily is NOT stupid or an idiot.

The other day, I read someone's status update on Facebook and they referred to their smart phone as "riding the short bus" because it was acting so stupid/slow. I have to admit that I considered unfriending that person because their "short bus" comment hurt my feelings and pissed me off at the same time. I've had/have children who ride the "short bus" and there are very good reasons why they've ridden that bus aside from children who are in wheelchairs or other physical needs. It is a SAFETY ISSUE. When the boys rode the special transportation bus, it was because Reagan was a runner (needing constant supervision) and we also feared how the other typical kids would treat them. It also was a fairly quiet environment for them to ride in and much less stressful than the other loud bus. Dasha and Lily ride the special transportation bus right now and one aspect I love is the 5 pt harness/seatbelts they wear. I love that someone greets them at the school to help them get off and get to class. The usually calmer surroundings and the aide, who rides with the bus driver in case another adult is needed, are other positive aspects.

So next time you see a "short bus" maybe you could think of my sweet girls riding inside excitedly going to school or thrilled to be going home. Maybe think of how safe they are instead of laughing or joking about the "short bus" or how "retarded" the kids might be inside.

Happy Birthday to my Ukrainian Princess!

2011-04-03T13:26:00.010-04:00

Dasha is 8 years old today!!! This is her 3rd birthday celebration with us since she came home. I love watching her excitement and joy because she knows today is special to her. She might not understand the whole concept of being 8 years old, but she definitely knows we are celebrating her and that's what's important.

I do wonder if her birthparents are thinking of her today. I'd like to believe they are. I'm not even sure if they know she was adopted. I hope so. I also wish they could know how loved and treasured she is.

She loved opening her gifts. Dasha loves clothes so that is what she got. I also gave her a doll that I've had for years that I actually bought for Lily, but Lily has never been a fan of dolls. Dasha, on the other hand, adores dolls and is quite a good little mommy to them all.

Happy Birthday Leo!

2011-04-01T20:13:00.013-04:00

This picture pretty much sums up what Leo thought of his birthday
Watching Teletubbies...jumping up and down on the couch...

hating my camera

Mommy, I don't feel so well...
Not asleep, he dislikes the flash of the camera...
Yummy!

It was a so so birthday for my sweet boy because he just wasn't feeling well at all. We've had several fall victim to a nasty cough with wheeze and fever. Leo just wasn't too interested in doing much of anything and it was very hard to get him to show off his sweet smile. One surprise was that he actually ate a few bites of his cake.

Wordless Wednesday...she adores him.

2011-03-16T14:30:00.003-04:00

Bruno Mars - Just the Way You Are (Cover by MattyBRaps ft. Tyler Ward)

2011-02-25T11:26:00.001-05:00

Lily Lu

2011-01-26T12:01:00.002-05:00

My little smiley superstar has been wowing us with her growing sight word vocabulary. A few months ago, I made over 100 flashcards to help her practice and was shocked when she showed me she already knew over 50 words. That number is steadily climbing the more we practice and boy does she love to practice!

We have been having a few issues with Lily gagging randomly. She has always done this, but we hoped to see it disappear when her tonsils were removed because we assumed it was due to how large they were. Sadly, she still gags occasionally and the best way to describe it is to say she looks like she is dry heaving. Our ENT referred us to a Pediatric Gastroenterologist. I really liked her and she is going to do a Upper Endoscopy/EGD (esophagastroduodenoscopy) on Lily in the near future to check for a few conditions that may be causing the gagging. She has to be sedated and thankfully it is a very quick procedure. They will look at her esophagus, stomach and upper small intestine. It would be nice to have some answers and possibly a treatment. An extra bonus is they will be able to do all of Lily's blood work while she is asleep thus avoiding the inevitable flip out.

Lily is also being referred to a Pediatric Orthopedic Surgeon because she has been having problems with her legs (especially her right one) locking up on her at the knee and hip area. She has always tended to lock & pop pretty regularly with her hips, that to me would be painful, but it never seemed to phase her. Lately though, she has been having a hard time with her knee or hip (not sure if it's one or both of these) locking up and then she can't bring her leg down to stand. She will either try to sit down or look like a flamingo with one leg held up and the other one touching. You can tell she is bothered by it when it does this, but usually it quickly resolves itself if you let her sit down and let her work it out herself. But with her lower muscle tone, Lily tends to sleep on her stomach a lot of the time with her feet under her criss crossed underneath her. It pretty much looks like she fell asleep sitting up and fell forward. She also lies on the bean bag with her legs laying on her chest. It is extremely easy for her to do this and with her joints, muscles and tendons being so lax and loose, I've always wonder if this position has aggravated her hips/knees.

Kindergarten is going well for Lily. They seem to be impressed with her cognitive abilities and Lily has shown them her sweet personality. The kids seem to really love and accept her. She still needs to be pushed and prodded, but that is nothing new. Our biggest problem right now is a child's bloodcurdling screams on her bus. If you know Lily, you know she HATES any kind loud noises especially screaming. So, we have been driving her to school more often because she fights us as we try to take her out to the bus. Her day consists of her being in Regular Ed for 45 minutes at the beginning of school, then she goes to Resource for an hour to work at her level of academics. After that, she heads to a sensory room for a 10 minutes or so. The last 35 minutes are spent in Regular Ed during the "free play" time. She seems to enjoy her 1/2 day in Kindergarten, but where we are really seeing results are from her Developmental preschool. They are really upping the bar for her because we only have about 8 more months with them because Lily is going into full day 1st grade in August. Our goals for her right now are potty training, eating better (can't even imagine her eating in a lunchroom with her peers), communication and other life skills. We are really trying to encourage her independence too because she prefers everyone to either help her or completely do for her fairly easy tasks and that needs to stop.

Potty training is in full force and Lily spends the majority of the day in her big girl "pants". She loves to flush the toilet now and say "I did it." I'm really hoping we can get her to "drop a duece" as my brother calls it in the potty because she pretty much waits until bedtime when she has a diaper on to do her "duece" business. I seriously daydream of the days I have no one in diapers. ;)

We have seen Lily grow up a lot in the last 6 months and you can tell she is trying so hard to communicate with us. She is quite a labeler (Is that even a word?). For example: If she sees someone she knows, she will keep saying their name repeatedly. If she thinks we are going to go to Hippotherapy, she will say "Horse!" If she thinks we are headed to my parents, she will say "Papa" repeatedly referring to my Dad (Grumpa). She labels everything and this is her way of communicating. I know what she is doing and understand quite a bit of her unique way of communication with me, but others struggle with having conversations with her. It is so frustrating to watch her struggle to get her point across and just say the same word over and over again. It is a guessing game at times trying to figure out what she wants. She will say one word utterances for most of her wants. Some examples would be "Oats" for Cheerios, "drink", "potty", "DVD" to watch TV. She also will say a word, wait for us to repeat the word and then she will say another word to help you know what she is asking for. For Example: Lily: "Barney" Me: "Barney?" Lily: "Book" - This means she wants her musical Barney book toy. Another example: Lily: "Hungry" Me: "Hungry?" Lily: "Eat" -This means she wants her special cereal to eat. Finally, Lily: "Chicken" Me: "Chicken?" Lily: "French Fries" -This means she wants McDonald's chicken nuggets and french fries. This works for us, but if an outsider were to listen to her talk, they would have no idea what she wanted and that is very concerning to me. So, we are now using more sign language to help facilitate her use of 2 or 3 word sentences. If you sign a word, she will say the word so signing 3 signs in fairly quick succession will make it a 3 word sentences. "I go outside", "I go school" can be signed very easily and she mimics the signs very quickly. It's pretty amazing how it's been working. I'm hoping this will help her understand how to form sentences and use them regularly. This way of signing is more like English sign language instead of American Sign Language. We are teaching her to sign the way we speak or in proper sentence structure. I'm using ASL signs because that is what she knows, but I think it is important for her to learn how to speak and the key word is SPEAK correctly. Interestingly, Lily has learned a few short phrases without any help. "Oh No!", "go bye bye", "brush hair", "comb hair", "I did it", "good job", "good girl", "brush teeth", "uh oh", "oh my gosh", "all done" and probably a few others that I can't think of flow out of her mouth and she uses them appropriately. She is so happy when she is able to participate and to have others understand what she is saying. It has definitely helped her in social situations. She actually interacted with several of her uncles, aunts and cousins this past Christmas and I think they were all pleasantly surprised.

Sesame Street: Will.i.am's Song "What I Am"

2011-01-22T12:48:00.006-05:00

My sister just sent this to me and I love the message. The girl's and Leo LOVED it!

Miss Isabella

2011-01-17T19:30:00.006-05:00

Izzy is now 4 (Bday was December 4th) and I'm amazed at how much she has grown up this past year. She has become my little helper and my go to girl when I need information. Her speech has really turned a corner and for the most part I understand pretty much everything she says. She goes to preschool and has speech 1x a week at the public schools. Izzy adores anything school related. In December, at her preschool, they were talking a lot about the birth of "Baby Jesus", Mary and Joseph. Izzy loved hearing all about it and now loves to have our children's Bible read to her. I laugh though because she refers to Jesus as "Baby Jesus" all of the time and it drives Riley nuts. He keeps telling her that Jesus grew up. Over Christmas break, Izzy had a fantastic time with her cousins, aunts, uncles & grandparents. I think she wishes we all lived under the same roof and could play hide and seek everyday.

It's been bittersweet watching Izzy catch up or even surpass Lily & Dasha's level of development. I love how she is able to articulate her needs and how easily it is to have a conversation with her. I ask her a question and she answers (in a complete sentence). She can count to 20, recognizes several sight words, knows her colors and seems pretty much ready to start Kindergarten even though we have a 1 1/2 to go. But because of the girl's learning differences & cognitive abilities, we have started talking to Izzy about Dasha and Lily having Down syndrome. It is a very basic explanation, but we wanted to help her understand why Lily, at 7 years old, still wears a diaper and can't walk as well as she can. Also, to help her understand Lily and Dasha's speech issues. We also wanted her to understand why she will start kindergarten when she is 5 not 7 like her sisters. Just little tidbits of information. I want her to grow up to be compassionate instead of jealous of some of the extra attention or even therapies she seems to think she is missing out on by being typical. I don't think she sees any differences with Dasha yet, but she definitely notices Lily's because they are much more obvious. She is always very sweet and gentle with Lily and Leo. With Dasha though, it is a different story.

Izzy and Dasha are extremely competitive with each other. If one of them is receiving any type of positive attention, then the other thinks they must get the same type of attention. On the other hand, when something is broken, in the wrong place or messed with, I will ask "Who did this?" and Izzy always says "Dasha did it" whether she did or not. Dasha has quickly joined in on the blame game and has now started saying "Izzy did it" just to take the heat off her. Izzy tends to learn very quickly, where Dasha may need more repetition to learn a task/concept. This learning difference makes Dasha very frustrated and it has caused some jealousy between the girls. Izzy has figured this all out and has started bossing Dasha around about what she can and can't do. For example, I've been trying to teach the two of them how to push play on the DVD player. Izzy learned very quickly, but Dasha kept pushing the wrong button. Izzy quickly decided she was the ONLY one who could push the button and would gleefully tell Dasha "NO, you're pushing the wrong button! I can do it!" Well, the gauntlet was thrown down and I swear by the end of the day Dasha had mastered the play button. I really think they will be the best of friends as the years go by, but for now it's all about keeping score. ;)

We have also started sharing with Izzy some of her adoption story. She has known or at least heard us say that she was born in Guatemala and that Dasha was born in Ukraine for awhile now. Last month, I talked to her a little about how she lived with a foster family in Guatemala until we were able to come get her and bring her home. I even showed her pictures of her foster mom and was worried about how she would process this information. She seemed to be curious, but not distressed about the whole thing, but I know Izzy tends to under-react to things that would be very upsetting to others. Because of this, I took it very slowly and answered her few questions, but didn't overload her with too much information at this point. I have not once brought up her birth mother or birth family because I don't feel she is ready for this information yet. I really think it is helpful that I can always reference Dasha and how she was adopted too. I think it would bother Izzy so much more if she was the only one who'd been adopted. For now, I'm going to keep answering her questions honestly and slowly give her facts of how she came into this world and share what information I have of her birth family.

It Begins With Awareness.

2011-01-15T12:04:00.005-05:00

by Kelle Hampton

Donate here

Beautiful & perfectly said! I love her blog: Enjoying the Small Things

Leo the late bloomer

2011-01-08T17:42:00.001-05:00

I figured it would be a good idea to give updates on the kids since I've barely blogged these past few months. I'll start with #7 and work my way up. Leo is now 21 months old. He is my busy busy boy. We have been seeing definite improvements with his development and social interaction. He receives speech, occupational, physical and developmental therapies every week. He also is doing Hippotherapy (Horseback riding therapy) and LOVES it!

He's begun to understand that toys have purpose other than carrying them around and is noticing more of his surroundings. We catch him lately playing appropriately with the girl's toys and flipping thru books (as well as chewing on them-ugh!). He is still very fond of Legos. He also is giving better eye contact. It is interesting to watch Leo give me full eye contact. He looks like he is looking at a bright light while locking his eyes with mine. He has actually reached out and touched my face like he is just now discovering my features. He still can't hold the eye contact very long, but hey at least we are seeing it happen. He adores watching Thomas the Tank Engine and his newest passion is playing with my iPhone. It is quite funny to watch him use his finger to scroll thru the apps and turn on the iPod. He has been on Facebook, dialed 900 a few times and managed to almost send a text to Matt. Scary how quickly these little minds latch on to all the fancy technology.

Probably the most frustrating thing for us is that Leo still has no speech. He makes some singsong sounds and can scream your ear off (either in excitement or anger), but we have never heard a meaningful word uttered. I (again) dream for the day we hear a DaDa or a MaMa or the ever cute UhOh. Shoot, I'd be thrilled for pretty much anything at this point. His receptive language is growing at least and I'm trying to get him more interested in signing to help alleviate the frustrating screams when we misunderstand what he wants at times.

He is still too young for an autism diagnosis, but we are certain he has it. When comparing him to Reagan and Kaelan, we see traits from both of them in Leo. We have noticed that he seems milder in his reactions to things like change or when he doesn't get what he wants (Thank you God!). He acts deaf and ignores most people when they try to talk to him or when they call his name. It's funny how everyone thinks if they talk louder or repeatedly say his name then he will respond. Um, nope he's just not interested in giving you the time of day. We are doing a sedated ABR hearing test this coming week to make sure, but most likely his hearing his perfectly fine. He shows a strong interest in music, the alphabet & written words. Reagan was actually reading words when he was 2, but I don't know if Leo will follow suit. I think starting therapy so close to his 1st birthday has made a big difference. One of my biggest regrets is that we waited until Reagan and Kaelan were 2 before we pushed for them to be evaluated by our the Early Intervention people. Doctors and others kept dismissing our concerns because they were twins and boys. Seriously, if I had a dollar for every time I've heard "Boys talk later than girls," I'd be mega rich. ;)

Leo is my snuggle bug and I'm thankful that he is so attached to me. I know how to soothe him and that is a big thing in the world of autism. Another bonus is his beautiful smile (as you can see in the picture above) is becoming more frequent and he is starting to giggle appropriately during silly play like peek-a-boo or when I pretend to be a buzzing bee and stinging him. We are finally getting a glimpse of our sweet little boy trapped behind the literal wall of autism and I'm loving watching Leo bloom.

(Leo the Late Bloomer is a children's book that I love and can be purchased here)

Reece's Rainbow 2010 Angel Tree Results

2011-01-07T00:00:00.003-05:00

Angel Tree Sponsor Page

2010 ANGEL TREE RESULTS

Over $305,000 in grant donations raised (this is nearly QUADRUPLE what we raised in 2009)
2000 ornaments purchased (DOUBLE from 2009)
A New Year Miracle Gift of $50,000 made it possible for every child to meet their $1000 Angel Tree goal for theFIRST TIME in our history
(30) children found their "forever families" between Nov 1 and Dec 31
All Angel Tree grant funds are now reflected in each child's individual profiles on the website, so feel free to advocate for them further
Now is the time we transition to raising awareness for the availability of our adoption grants, and to put these funds to the use they are intended: SAVING LIVES! Please share this link with others you know, and help us celebrate this historic victory by bringing ALL of these children into loving families of their own before next Christmas.
If you are interested in adopting one of these children, please click here for more information

Reece's Rainbow 2010 Angel Tree Results with pictures

I'm still here.....

2010-12-19T23:43:00.002-05:00

but having 1 Sophomore, 2 eighth graders, 2 kindergartners, 1 preschooler and 1 at home seems to be taking up most of my time and energy just keeping track of school, appointments, therapy...you name it. So this blog has taken a back seat. We are now on our Christmas/Winter break and we're looking forward to spending time with extended family. My entire family comes into town and that means 21 (soon to be 23) grandchildren will be tearing around my parents house for the next week or so. I love seeing all the cousins together even as crazy and loud as it can be, but I'm betting my parents will conveniently loose their hearing aides until after the new year. ;)

I hope you enjoy our Christmas card below that Matt designed for us this year.

Reece's Rainbow Christmas Angel Tree Sponsorship

2010-11-22T22:33:00.004-05:00

Please click HERE and check out all of the beautiful angels who would love a family. Please consider sponsoring a child (or two) and help them find their forever family. (Christmas Angel Tree)

Wordless Wednesday

2010-10-20T18:00:00.000-04:00

October is Down Syndrome Awareness Month

2010-10-19T21:40:00.005-04:00

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

The boys

2010-09-20T13:08:00.005-04:00

3 Generations @ the Manning Bowl.

You'd never know it by the boy's expressions, but they had a great time at the Red's game.

Lily 7th birthday

2010-09-14T16:29:00.010-04:00

Wow, I'm so behind on updates!

We celebrated Lily's 7th birthday on Sept 2nd and our big girl has just started using the potty A LOT. She loves the Fisher Price Cheer For Me potty that plays music as soon as the sensor has pee or poo hit it. It is the perfect thing for our little cause and effect music girl. The little stinker will only go enough though to activate the sensor, but I'm not complaining because it showed she knows how to control her pee.

She is having a wonderful year so far in school. Kindergarten has been going really well and we are lucky to have them so open to suggestions from Lily's private teachers. They even allowed Sharon (private preschool teacher) into the school the first day of Kindergarten and also last week to make sure the school sees Lily's true abilities. She is great at pulling the wool over new people's eyes by acting helpless, as well as throwing some stubborn into the mix.

Please vote for Andrea and Reece's Rainbow!

2010-09-13T12:43:00.005-04:00

From September 10-October 8, 2010, YOUR VOTES can help Reece's Rainbow WIN the Hero of the Year Award and $10,000 from People Magazine!!!

Featured in Feb 2010 as a "Hero Among Us", Reece's Rainbow has now been chosen as a finalist in the 2010 People Magazine Hero of the Year Contest!

VOTE NOW!!!

No restrictions, vote as often as you can.

Wordless Wednesday

2010-08-25T00:04:00.002-04:00

The State Fair 2010

2010-08-23T13:50:00.012-04:00

Last Monday, right after school, we went to the Indiana State Fair. It was a beautiful cooler day and the crowds were small. It was carload day so we arrived in our 15 passenger van with 9 people and only paid $15 to get in the gate. We spent way too much money on food and wristbands for the boys to ride rides, but we had a blast! We saw Momma pigs and cute baby pigs. We also unfortunately saw ginormous nasty looking male pigs. We saw lots of sheep including one Momma sheep with 1 black lamb and 1 white lamb (twins). We saw Clydesdale's and several other types of horses. And last, but not least, we saw lots of cows.

We consumed way too much high caloric foods, but how can you turn down elephant ears and deep fried cookie dough. I tried to keep track of everything eaten and came up with the following list of goodies consumed by some or all: 2 elephant ears, 1 corn dog, 3 ribeye sandwiches, 1 Italian sausage, deep fried cookie dough, 1 deep fried snickers, 2 snow cones, 1 huge plate of ribbon fries, 1 huge plate of curly fries, 1 turkey leg, 1 chicken strips/curly fries basket, 4 lemon Shake-ups, 2 bottles of water, and 3 bags of popcorn (kettle corn, butter popcorn and "Chicago" popcorn).

Leo lovin' his Lemon Shake-up. He DID NOT want to share.

Izzy and Dasha adored their Shake-ups too!

Next stop: Heart attack on a stick!
Kaelan is holding a deep fried Snickers and Matt is holding deep fried cookie dough
Izzy trying the deep fried melt in your mouth cookie dough.
Dasha taking a little bite to see if she likes it
YUMMY!
Lily's beautiful eyes
Riley watching the tractor parade. Can you tell he was thrilled?

Carousel fun!
My 3 little pigs!

A rare shot of all 7
A picture to prove I was actually there ;)

Beautifully Done

2010-08-22T12:44:00.005-04:00

Welcome to Holland

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emma and Izzy

2010-08-19T11:00:00.011-04:00

Earlier this month we went on vacation to Minnesota for our big family reunion. We met up with Jason and Tera, who adopted Emma from Guatemala during the same time we were in the process of adopting Izzy. We actually used the same agency. Tera and I travelled down to Guatemala City together to visit our girls when Izzy was 3 months old and Emma was 5 months old. We had such a wonderful time and created lifelong memories. Here is a picture of Emma and Izzy from that time (Izzy is on the left).

3 1/2 years later:
Love that smile!

3 beauties!
Silly girls!

Izzy & Dasha hamming it up

After enjoying a fun lunch, we went outside for the photo shoot. The girls had a great time running around and I wish we lived closer so we could play & visit more often. They started off shy, but ended up having a lot of silly moments.

While we were talking and watching the girls play, I was once again reminded how adoption has brought some pretty amazing people into our lives. People we would have most likely never met. I ♥ adoption!

I'll Never Let You Go

2010-08-17T13:56:00.008-04:00

Matt and I started dating the summer before our senior year in high school. The following year we went off to separate colleges. Matt wrote this song and recorded it for my birthday when he was living in Boston during his freshman year at Berklee College of Music. He was only 18 years old. I was a freshman at Purdue in Indiana and we were miserable apart. I remember crying when I heard it for the first time (and every time afterwards). We both transferred to Indiana University the following Fall because the long distance thing wasn't working for us. I still love listening to Matt sing "my song" 24 years later.

(The picture above is the album cover that this song was recorded on in 1997)

Wordless Wednesday

2010-07-28T12:12:00.001-04:00

Update on Dasha and her hearing

2010-07-18T13:30:00.009-04:00

In early June, we picked up Dasha's hearing aides. We had a 30 day trial to decide if we thought they helped her with her hearing loss. We got 2 weeks in and I started noticing Dasha seemed to be having hearing issues (more than usual) without her hearing aides in her ears. For example, I would open her door in the morning and she wouldn't react. I would have to call her name and this was unusual because the sound of the door opening usually alerted her to my presence. She also seemed to be getting mushier with her speech. When we went into the audiology people for her 2 week check up to see how her hearing aides were working, I mentioned to them that she seemed to not be hearing as well even with the hearing aides in her ears. They did a tympanic exam on her and not surprisingly, she failed on her left ear. So back to the ENT, who saw Dasha in early May with normal tympanics, to see what was going on with her ears.

We luckily got in the next day from a cancellation. The doctor cleared out the excess wax and looked in her ear and saw lots of fluid. In May, Dasha's left tube had come out so we knew there was a possibility of this happening. We just hoped it wouldn't be so quickly. Because we were in our trial period of the hearing aides, we wanted to get the tube replaced asap. So, her surgery was scheduled on the 24th of June. When they went in to place her PE tube, they saw that she had negative pressure in the middle ear and this causes the eardrum to retract (her eardrum was sucked in towards the inner ear and not functioning at all). I guess this is fairly rare condition and of course causes hearing loss. Thankfully, they were able to fix the problem by clearing the fluid and placing new PE tubes in both ears (her 3rd set). We noticed an immediate improvement with her hearing.

So fast forward to this week, when we went in for the official hearing test to see if the hearing aides were truly helping her. I requested they do hearing test with and without the hearing aides to see how big of a difference there was. I just wasn't convinced she was hearing any better with them in. We were pleasantly surprised to see that she tested within the normal range without the hearing aides. She still is in the low normal for the lows tones, but nonetheless is in the normal range. We decided the cost ($3500) and Dasha testing within normal limits not to keep the hearing aides. We will continue to monitor her hearing very closely because this is obviously a ever changing problem with her. The good news is that her school has already set up for amplified sound system in the classroom and this support is written in her IEP so at least she will be getting that while in school in case her hearing does diminish. We are going to have be vigilant to make sure we stay ahead of the problem especially since she seems to be on a 6 month pattern for new tubes. I'm hoping as she grows bigger her ears are better able to function. We are probably going to be removing her tonsils within the next year or so considering how HUGE they are and I'm hoping this will help her have a growth spurt like Lily did when she had hers removed last year.

growth stats for Leo at 15 months

2010-07-14T16:48:00.006-04:00

for documenting since Leo doesn't have a baby book.

At 15 months old, Leo is 25.8 lbs, 33 1/2 " long, and 19 1/2" head circ. (measured 3 times because he was measuring off the charts the first 2 times -so subjective to the person doing the measuring)

That breaks down to 75% in weight, 95% in height, 100% head size for my monster boy! ;)

Oh, I also took him to Stride Rite to get his first pair of real shoes and he is already a 6 1/2W. Dasha (at 7 yrs old) is only a 8W, Lily (almost 7) is a 9W and Izzy (at 3) is a 9M. It is crazy how quickly he has caught up with the girls.

Leo loves Legos

2010-07-10T23:39:00.007-04:00

My big boy!
I love his expression in this picture.
Leo is always carrying around his Duplo Legos. He especially loves the little guys that come with them.

Leo is doing very well with his therapies. We have definitely seen major improvement with his eye contact since starting the Gluten and Casein free diet and therapy. We now know that giving him a lot of sensory input helps him look directly at you and focus on an activity. He has a hard time transitioning especially if he has no warning. His main vocalizations are blood curdling screams in excitement and lots of moaning type sounds. He is doing much better with sleeping and is finally down to 1 or 2 times of nursing at night. Overall, he plays really well by himself. He has started following Dasha and Izzy around to watch them play.

Probably the hardest thing right now is his over attachment to me. He doesn't like me out of his sight and seeks me constantly. He follows me around whining or crying A LOT. I'm thinking me holding him is his way of feeling secure in his environment because with his sensory issues, he feels out of sorts and unsure. Lately, I've been giving him a lot of pressure (hugging, squishing, joint compressions) and play lots of silly sensory games. It is amazing how he will lock eyes with me after giving him a couple of big bear hugs. He still loves the trampoline and we think it has helped him tremendously with his physical development as well as a huge sensory input benefit.

I just started reading a book called The Autism & ADHD Diet: A Step-by-Step Guide to Hope and Healing by Living Gluten and Casein Free (GFCF) and Other Interventions to learn more about the diet. We will eventually give foods with Gluten (Wheat, Barley, etc.) and Casein (milk protein) in them back to Leo to test whether or not we see a reaction, but for now I'm happy with the results we have seen so far. The hardest part adhering to the diet is when we go out to eat. People look at me like I'm crazy when I ask for a completely plain hamburger without a bun. Many times I just go to McDonald's and get him a hamburger and fries to take to where ever we are eating because I know they are Gluten free.

Happy Independence Day!

2010-07-04T23:00:00.000-04:00

Leo's Baptism

2010-06-27T13:39:00.005-04:00

Future Priest? :) I ♥ this picture so much!

Why do teenage boys refuse to smile or look at the camera. I think it is to torture me!
Can you believe all of these kids are from just 2 families? :)

My sister, Sarah and her husband, Jon are Leo's Godparents. We had a very sweet private ceremony. Leo is wearing the Christening gown most of the grandchildren have worn over the years starting with Riley. We were worried it wouldn't fit because we waited so long to baptize him, but it fit perfectly. He was beautiful.

Miss Attitude

2010-06-26T00:32:00.005-04:00

People adore Izzy. She always attracts a lot of attention and I'm not exaggerating. We've heard it all. How beautiful, adorable, sweet, precious or gorgeous she is. Everyone thinks she is flawless and is never EVER anything but happy. We always get a laugh about that one. To tell the truth, Izzy has a spicy side and I'm a bit afraid of what she will be like at 15. She really is a sweetheart most of the time, but there are days that she either gets up on the wrong side of the bed or maybe the moons are out of alignment. That is when we see the spicy side.

Busy Busy

2010-06-20T16:37:00.013-04:00

Ava and Leo loving the trampoline together.

Leo wearing his therapy weights and pressure vest. These help him gain strength and awareness of his body. He doesn't mind the vest, but quickly gets tired of the weights.

Sorry I've been MIA for the last few weeks, but having 7 children home from school has taken all of my blogging energy. ;) I seriously don't know how people homeschool. We've added 3 therapies for Leo to our schedule because he qualified for early intervention. He is receiving Physical therapy, Occupational therapy and Speech. He isn't overly thrilled, but once he is used to the new people in his life I think he will start enjoying the playtime. Leo has started taking 6 to 8 steps so I think he will be walking full time before we know it. We have started the Gluten and Casein free diet based on the few signs of autism we have seen over the last month or so. I won't lie and say it doesn't matter if he develops autism because it really does. It's been hard watching him quickly avert his gaze or not even really look at me now. He also doesn't respond to his name as well as he used to. It breaks my heart to see it happen and so quickly. The upside is that we are really trying hard to bring him back. Playing games and being silly get the best eye contact and you can be sure I'm doing that a lot. I'll let you know the verdict on the diet and whether it helps or not. I never did the diet with Reagan and Kaelan so it's a whole new world for me to discover.

We have also had lots of doctor check ups. Dasha is having her 3rd PE (ear) tube surgery this Thursday because she once again has fluid behind her eardrum. She has been wearing her hearing aides for over 2 weeks and we think we see improvement, but the fluid is really hindering the full performance of the hearing aides so we are glad to get the surgery scheduled quickly. Leo had his kidney ultrasound and nephrologist check up. His kidneys are still large for his size. His kidneys are at the 98 percentile based on his height and weight. She isn't too concerned because his kidneys haven't changed in looks and his blood pressure is within the normal range (did you know kidney issues can cause elevated blood pressure?). She will continue to monitor him for a few more years every 6 months just to make sure everything stays normal and healthy.

Dasha and Izzy are taking swim lessons this summer that are very basic, but they are loving. We haven't made it to the pool very much due to Matt's work schedule and our therapy/dev. preschool schedule. I will be thrilled when I don't have 4 that can't swim. It is impossible for me to go to the pool alone because Lily has no fear of water and has to be watched at all times. Not really an easy thing to do with Leo in tow.

We had a fun weekend with family. My sister was in town with her daughter Ava. So, Ava and Leo had lots of playtime together. My younger brother, William and his fiance, Lauren, were in town too. My sisters and I gave Lauren a bridal shower on Friday and Lauren's mom and sister flew in with Lauren for the event. It was really fun meeting her family and in November we will be traveling to California for their wedding. :)

stay tuned.....

Imagination

2010-05-31T23:07:00.000-04:00

It is so fun watching Dasha and Izzy play pretend. They dress their dolls (or undress), play dress up with princess outfits, they go shopping with their dolls in strollers or shopping carts, pretend one is a mommy and the other is a baby and even have tea. I love it! We've had to teach our other kids how to use their imagination in a very obvious way because it didn't come easily or naturally. They just didn't seem to understand or care to pretend. The twins in particular preferred factual things. They viewed the world very literally and very black and white (still do!). Taking a stick and pretending it was a brush to brush your hair was something they just couldn't grasp. Pretending to eat wasn't a fun past time either. Where was the real food? It took them a long time to learn to play with their toys appropriately. I'm just thrilled to see it coming so naturally with these two.

uh oh!

2010-05-30T17:21:00.005-04:00

My little daredevil wants to be like the big kids!

Autism Watch

2010-05-25T17:43:00.009-04:00

Having 2 boys diagnosed with autism, I've been asked several times if we think Leo will develop autism. I half jokingly say we have an autism watch going on because conditions are favorable due to our family's history. All joking aside though, we are definitely watching for signs. Some autism traits can show up during the 2nd year particularly in the 12-18 month age range.

BUT I don't want to see Leo stop giving me good eye contact. I don't want to see him stall in his social development or see sensory behaviors escalate. I don't want to see the delightful little baby boy he is just disappear in his own world (like his brothers did).

All that being said, you can be sure that we have taken precautionary measures. The biggest one is not vaccinating him. I don't care what the CDC or whoever says about vaccines being safe. For me, it isn't up for debate. Until they go through what we have gone through especially with no definitive proof the vaccines didn't trigger autism in the twins then I'm going to be VERY careful what my child is exposed to. Even though I believe there is a genetic component to autism, I also believe that autism is either triggered or aggravated by environmental factors possibly including vaccines. Another "risk factor" is Leo shares the same blood type as Reagan and Kaelan (type A). This blood type has shown an increased rate for autism and I've actually read that 8 out of 10 children with autism have type A. These are just two risks among many that possibly contribute to the development of autism.

Based on our experience, we definitely would know how to help Leo. In fact, we already had Leo assessed by our early intervention people(called First Steps in Indiana) mainly due to his speech delay. For now, we are assuming the delay was brought on by his hearing loss from fluid in the ears due to ear infections. Once the ear tubes were in place, his hearing did improve. Our ENT gave us the option of waiting and seeing if his speech started to emerge or to be proactive and have him evaluated by EI immediately. We went with proactive. About 3 weeks ago they (Occupational and Physical therapists) came out and asked lots of questions, observed Leo and tested him developmentally. We had our IFSP (Individualized Family Service Plan) meeting yesterday and found out that he qualified for Speech, Occupational and Physical Therapy. Thank God we didn't take the wait and see approach.

In a few weeks, Leo will start up therapy (2 of Lily's old therapists are coming -YAY!) and we are hoping to see a big jump in his development. If he does happen to have autism, we are getting started an entire year ahead of when Reagan and Kaelan started receiving First Steps and I think that will have a huge impact no matter what happens.

Lily graduated to her big girl bed!

2010-05-21T17:14:00.009-04:00

2 weeks ago, we moved Lily out of the crib she has slept in for 6 1/2 yrs and into her big girl bed. It has been a bit rough getting her to stay in her bed. I've found her face down on the floor out cold in front of her CD player several times and even once found her under her bed asleep. We have a gate at her door so she doesn't come out and do something horrible like fall down the stairs in the middle of the night. She seems to be doing much better the last couple of nights so I hope we have turned a corner.

I included the last two pictures showing Lily in Dasha's room hoping our speech therapist "Ernie" (aka Brittany) would be showing up. We started having speech at home last year and decided to do it in Dasha's bedroom because it is really quiet and away from the chaos. Reagan, Dasha and Lily have speech once a week, but I laugh how often Lily is in there trying to climb up into the booster chair ready to go. If she had it her way, she would have speech every day. :)

Can you hear me now?

2010-05-19T19:46:00.006-04:00

Dasha continues to have moderate hearing loss in the lower tones and Monday we went to the hospital's audiology department to get her fitted for hearing aides. Can I just say that I had no idea how expensive they could be. They are checking to see if our insurance will cover them, but they told us not to hold our breath. We picked out a golden color for the part that goes behind her ear to match her hair and the part that fits in her ear is going to be clear with red sparkles. These are very high tech digital hearing aides. They will do all the work including volume control in different levels of noise. Definitely not the hearing aides I grew up around. They optimistically say that these will last 7 years. Of course, we are putting them in the ears of a 7 year old, so I'm sure we would be extremely lucky to have them last that long.

We will try them out for 30 days to see if we see any improvement with her hearing because that is how long they allow for a full refund. I just hope 30 days is enough time to see whether they help her because I would prefer not forking out $4000 for nothing. Dasha will get them on June 2nd and I hope she tolerates having them on her ears.

Even with her hearing difficulties, Dasha is coming along very nicely with her speech and has the cutest way of sounding like Buckwheat when she says "Otay, Mommy." We have had a huge jump in comprehension and she now says 2 to 4 word sentences frequently since her 2nd set of tubes were placed in October (Can you believe that one tube has already fallen out though?). She can still give you a blank look if you say too much at once at her, but it is so nice to ask her simple questions and then hear her clearly answer. I think it makes her so happy to be finally understood.

Tatiana desperately needs a family!!

2010-05-18T15:31:00.011-04:00

Update: So happy to see Tatiana now has a family committed to her. Look at this sweetheart! She seriously could be Dasha's twin! She is almost 5 years old and is in Eastern Europe. If you are interested in Tatiana, please contact Andrea at Reece's Rainbow at bamaroberts@comcast.net. You can also read more about Tatiana's country requirements here

3yy9 -2H
Tatiana G.
Brothers and sisters no
Date of Birth: June 2005
Character: social, alert, affectionate, high functioning

Tatiana is a beautiful brown haired, blue eyed girl! She is an orphanage favorite, and they are hopeful to find a loving family for her! She is farsighted and will need corrective glasses, but she is healthy outside of that. She does not have a heart condition. She is walking, running, playing, etc. She is delayed with her speech, but this is typical for children with DS. Tatiana has already been transferred, but our facilitator shares this message about her: " Everyone there talked so warmly about her, saying what a nice personality this girl has, and that developmentally she was ahead of other DS kids. As a result of it she was transferred to a "normal" preschool orphanage where majority of kids have eyes problems, but not mental ones. "

LOTS MORE PICTURES AVAILABLE!

SINGLE MOMS WELCOME!
I have $170 in my grant fund towards the cost of my adoption!

What to do, what to do...

2010-05-16T19:30:00.000-04:00

Do you ever spend your days 2nd guessing decisions/choices you have made regarding your kids. At the time, a particular decision seems like the perfect answer to a particular problem and then a month (or months) later you realize what appeared to be a perfect answer was really wishful thinking and you still had the problem or even worse a new problem stemmed from that so called "perfect" answer.

Over the years, we have chosen therapies and schools that we hoped met our children's individual needs best. These choices were also influenced by monetary or time management reasons. Some have been brilliant choices and some have been downright bad choices. In theory, you try to get them anything (and everything) that might help them feel successful and to reach their fullest potential. In reality, it seems like the ones with the most obvious behavioral or therapy needs tend to get the most intervention (you know, the squeaky wheel...). Then, the ones who didn't seem to require as much help or support end up being the ones who now need it the most.

We are once again forced to make some big decisions about one child in particular. For now, I just want to make the best choice without any regrets later. Easier said than done. I'm praying with God's help we will make the right choice...this time.

I know, I'm lame

2010-05-05T17:33:00.011-04:00

I'm really hoping to have some interesting (at least I hope) posts soon. But for now, here are some recent pics.... :)

Miss Ava Jane. Ava is Leo's (and the other 6's) cousin who was born just 7 weeks after him. She came over for a playdate, but Leo didn't seem to interested until they wanted to play with the same toy! (see below how sharing works for these two-haha). Ava is about to celebrate her 1st birthday really soon.
Isn't she adorable?!

push came to shove....

I guess eating wore him out.

Leo LOVES Signing Time. He has a HUGE crush on Rachel!

Something to make you smile

2010-04-22T08:28:00.002-04:00

These are pictures I took in for Kindergarten Roundup. Their future Kindergarten teachers will use them in August.

Wordless Wednesday

2010-04-21T10:27:00.000-04:00

Piano Man

2010-04-20T08:21:00.002-04:00

Just like his Daddy!

(Development: Leo now lets go and stands for about 5 seconds. He still isn't saying much. Usually loud cooing is about all we hear. He is getting his hearing and ears checked today and I hope he passes. He still nurses, but is doing better with a sippy cup. He has the nickname "Archie" because he arches his back (looking like a backward C) whenever he doesn't like what you are doing to him. It makes it really fun putting him into his carseat. He is eating great and as I said to my sister is "all business with eating").

2 birthdays

2010-04-19T09:51:00.008-04:00

Dasha turned 7 and Leo turned 1 while we were in Florida. It was fun seeing how much Dasha enjoyed her birthday (our 2nd celebration since she came home) and how she understood what it meant. I don't think she necessarily understands that she is 7 years old, but she sure did understand that it was her special day. She was so excited about her cake and presents. She also LOVED having Happy Birthday sung to her.

Leo, on the other hand, was NOT impressed and pretty much got overwhelmed by the whole thing. He really didn't like his cake and freaked out about all of the icing on his hands. His expressions were priceless.