Thursday, June 30, 2011

Q&A #197

Can't believe how fast your move is coming up. I wonder how Kellsey will deal without her spot ;).
She'll most likely find a new spot. When we went on vacation, she found a "spot" everywhere we went and planted herself there. My guess is, it will be close to her toy bucket, but in sight of the television. We'll see if I'm right. ;)


do you think she may be a carrier? My son is so he gets MSRA very easily!! :( 
She could be... a few years back she battled staph endlessly it seemed like! She's done well for awhile, but this one just snuck up on us. 


Just wondering, and sorry if you've already answered before...when does Kellsey sleep if rarely at night?
She really doesn't sleep a lot of nights. There are nights she will literally be awake all night long, then eventually she will crash and sleep hard for several hours. I honestly don't know how her body survives on the little amounts of sleep she gets though. I would be constantly exhausted. Her ENT says this could all have to do with her apnea. I'm really hoping that after she gets on her c-pap or bi-pap or whatever the ENTs in Colorado decide is best, it will help her sleeping habits a lot


I do not know why I did not think to ask you before. but how hard was it for you to get your adopted children into DEERS, was it easy because you had adoption papers. My husband niece just awarded us custody 2 weeks ago of a 1 and 3 year old. we have temp custody until Aug when we will have full custody which is when we can put them on DEERS. do you have any suggestion. I would love to invite you to read my private blog about the boys. I talk about them on my family blog but try to save the personal stuff for the private blog
Ugh DEERS was actually a pain in the butt for us. Tricare was easy as pie, but the people at the DEERS office here didn't know what the heck they were doing! They made it SO complicated! I THINK if I remember right though it had to do with them not accepting her birth certificate or something. You should be fine. We got around it by going to the DEERS office at a local Army Reserve base and they entered her right in with no issues after weeks of drama at Ft. Campbell. We just walked out shaking our heads. LOL SO, if you have issues at your regular post, go to a reserve post! 


my question is Can you give Kellsey something natural to help with sleep?
I'm not sure because of her heart issues. We had one cardiologist say yes and one say no... and there you have it. HA! 


Can someone with Down Syndrome also be Autistic? She sure does sound a lot like me. 
Yes. I'm not sure what the exact percentages are, but Down syndrome and Autism do coincide from time to time. 


please oh please explain those cool floats, they look really fun and comfy
Those are called puddle jumpers and they are awesome! They are more secure than floaties because they wrap around the front, yet better than life jackets because they're less restricting so kids can actually swim in them! Kennedy and Keeghan swim all over the pool in those things! I love them! You can get them at Wal-Mart in the camping supplies or on Amazon.com right here. :) 


Too funny how your friends' kids are "K's" too!!
Does Kaleb have Down Syndrome too? 

Nope, he was born with a bad kidney which led to a crazy long drawn out story. His mom, Katrina, ended up donating one of her kidneys to him. He's an amazing kid!! 


Loved all the pictures! All the kids are just to cute! I got a crazy question. Can you please find out what kind of shoes Kaleb is wearing. And who sales them. My oldest little boy Kolby has really flat feet, and I'm thinking those might help him. We have tried everything we can think of from AFO to sports braces with no luck! Thank you!
Katrina said she got them at Children's Place and they were on sale for $8.00. She said they're really swim shoes, she thinks, but Kaleb wears them everywhere! I did not see them online, but you could check the stores, they may have them. Hope that helps!! 


How long do you expect it will take to drive there? Are you stopping at all? I can't believe it's only 6 days away. Craziness! Don't your new neighbors have 5 kids too or was that at your first favorite house? 
We are stopping for lunch one Wednesday in St. Louis and meeting with friends and so we'll probably hang out a bit there. Then we'll stop in Kansas City for the night and we're meeting with more friends. Thursday we're planning to drive the rest of the way into Colorado. It's about 8 hours drive time per day... that's not counting stopping for gas and bathroom trips. ;) And it was the first house that we really liked that had the neighbors with 5 kids. I don't know anything about these neighbors. We'll soon find out! 


I wish we could come help! Who gets to ride with the kids, or are you guys gonna split them up??
Kameron is going to ride with Frank in the moving truck, the 3 little kids (and the guinea pigs) will be in the van with me, and Kass will be with my mom in the suburban. Should be fun!! :) 


how exciting....i assume your mom is flying back? unless you just dont let her leave,lol....how long is she staying with you all? hopefully long enough for her to decide to house shop?
Yes, she will be flying back on the 13th I believe. She's going to help us get settled in and, you know, help me buy enough toilet paper for all those bathrooms! HA! She still has a house to sell here in TN before she decides when/where she's going to settle down. 

Six Days!!!

We are out of here in six days!!! Our deep freezer is now officially empty thanks to my mom and next door neighbor (or maybe they should be thanking us! HA!) and it will be put in the garage to defrost today. We're down to the bare minimum on boxes, the girls' bedroom looks like this...
 and we're to the point where we just need to throw stuff in, because nothing makes sense anymore. There's no rhyme or reason to the stuff left. As much as it kills me to have random boxes of "stuff", that's just the way it has to be. At least we'll only have a few random boxes this time, instead of 10 or so like last time! Even though we have 3 more kids since our last move, this move is much more organized, I must say. Maybe it's because I was 7 months pregnant last time. Hmm...


On Monday, Frank will pick up one of these...

And wouldn't it be awesome and not at all creepy if our moving truck had eyes like that?! HA! We plan to start loading on the night of the 4th after the kids go to bed and then finish up on the 5th. The temps are supposed to be right around here... 
which should make for a lovely packing experience, don't you think? If you live in the Clarksville area and aren't busy on Tuesday, you're more than welcome to come help. We'll order pizza!!! Or, you know, ice cream! 

Come on, doesn't this look fun!? :) 


And then next Wednesday we will caravan out of here. Frank will be in the moving truck, my mom will be driving the suburban and I will be driving our van... I promise we won't look like this... 

And hopefully there won't be any of this happening... 

And soon we'll be in Colorado Springs, unpacking, while our new neighbors talk about all the stuff we have. And they'll be saying, "Oh my gosh, they have FIVE kids!" HA! 

But I promise that getting there will be an adventure! Stay tuned! 

Wednesday, June 29, 2011

Dinner With Friends

We have been hanging out with different friends for lunch and/or dinner almost every day this week. We are trying to find time to say goodbye to as many people as possible. Last night we drove out to Mt. Juliet, about an hour from here, to see our friends Katrina and Erik and their kids.

We first met Katrina and Erik when Kennedy was in the hospital in 2005 when her duodenal web was discovered. She was in the hospital being fattened up with nutrients so she would survive surgery to correct the blockage and their son, Kaleb, basically lived in the hospital at that point while he awaited a kidney transplant. The kids were just a few months apart in age and we spent a lot of time together hanging out, playing board games after the kids went to sleep and just making the best of hospital life!

Kennedy and Kaleb in 2005 :)

Kaleb and Kennedy today :) Both kids are doing wonderfully! 

Here are all the kids last night... they have one new addition... Kaleigh, and we have two more! haha Their nephew, Tyler, was also there to join in the craziness fun! Thanks guys for having us over! It was so much fun hanging out! My kids slept great last night!

First the kids played in the pool... 

Kaleigh... :)


Goofy Kassidy

That's better!

Chillaxin' 

They're GREEN!

Kaleb :)

She's a diva, even in her mask!

Enjoying the cool water

Look, Ma! No hands!

Deep Sea Diving

Erik spinning the girls around

She's fashionable no matter what she wears! 

After they dried off they played in the driveway... and the lesson we learned here is that Kennedy needs serious driving lessons before she turns 16. I'm scared. 

Kennedy and Kaleigh... Kennedy crashed... oops! 

Policeman Kameron to the rescue! 

Kennedy's off and driving again. 
Kaleigh's no fool, she got OUT while she had the chance! Keeghan... not so smart! LOL 

"R" is for "Radio"... right?! 

Kaleigh found a much safer car! ;)

I think Kaleb was about to be run over by Kennedy!

Kellsey's holding on for dear life... no one's safe!

OK Kennedy's been arrested... the roads are safe for driving again. 

Except now Keeghan's driving! This may not be much better!

You can't catch me, Mr. Policeman!

Those darn kids stole my police car! I'll get them yet!

Muah ha ha ha ha! We win! 

Thanks Kaleb and Kaleigh for sharing your super cool toys with us!!! :o)

Tuesday, June 28, 2011

Q&A #196

what date are you moving?
July 6th!!! Right around the corner!


Are the kids sleeping on campbeds or are the photos deceiving?? That is pretty much packed up!!! 
They are... Kennedy and Keeghan are on cots. Kass and Kam are on the floor. They are all in one room because the girls' room is full of boxes. Kellsey is still in her room in her bed because she doesn't do change well (and because she doesn't sleep at night hardly ever so she needs to be in her room so she can be awake without bothering anyone). We sold the girls bunk beds and Kameron's bunk beds and Keeghan's toddler bed, so they're not packed, they are GONE! But Kassidy, Kennedy and Keeghan are all taking beds from my mom's house so we don't have to buy new. Kameron will be getting a "new" bed (new to us at least) once we get to Colorado. I really want a captain's bed for him. We'll see. *whew* I'm so excited they will each be in their own rooms!!! Bedtime has been rough with 4 in one room, just getting them to settle down at night! I'm ready to GO!!!!  


Okay, now IF I was G*d (and I'm NOT!!!), I would have made Newborns stay tiny for 3 or 4 years and teenagers for only 1 year!! : )
What a beautiful baby girl! I know you must have been IN LOVE!! Come on? Wouldn't it be nice to have kept her that teeny, tiny baby for a few more years?? 

Hmmm Maybe... however, I do not miss changing all those diapers! ;)


I love the expression on her face in the 3rd picture (her 1st real picture)! She is such a pretty young lady :)
Me too, always been one of my favorites!


lovely!! I hope u do a blast from the past on them all. So darling. I adore the hospital photo, that's the sweetest hat. You must've gotten the biggest giggle from that! I like that 1st portrait too. Looks like Sears? Penneys? 
Yes, I loved that hat! LOL I think Keeghan wore it, too! Actually, I think that portrait was done at Kiddie Kandids. We used to go to them a lot! 


Does he still say his R's like that? I know this is old but it seems like he does in all videos....did he ever do speech therapy?
Whew! That video IS old!! One of my favorites of my little guy though! :) He was in speech therapy from 2 1/2 (when he wasn't talking at all) until almost 5 years old... when he was about 7 he asked me, "Mom, why do R and W make the same sound?" I said, "Only to you, baby!" As for now, I actually had to ask Frank if he still says his R's wrong (Kam's in bed right now) and Frank says no, he says them correctly now. I'm so used to the way he talks that I never notice things like that anymore! 


Very cute. :) Is it just me, or was she a tiny baby? Especially when comparing her pictures to Kameron's I think she looks tiny. 
Kennedy was 6lbs, 3oz when she was born. Kameron was 7lbs, 13oz, so Kennedy was small compared to him... however, Kassidy was only 5lbs, 13oz when she was born (I had toxemia and had to be induced early), so she wins for my tiniest baby. :) (Keeghan was 7 pounds even.) BUT Kennedy stayed tiny for the longest because she had a blockage in her intestine called a duodenal web that went undetected for the first 7 months of her life. She only weighed 7 pounds at 7 months old. It was a rough first 7 months of life... once that blockage was discovered though and they were able to get her nutritionally stable enough to operate she finally started growing!! Of course even now at 7 years old, she's only about 35 pounds, so I guess size is all relative! ;) 


Can she still put her feet up to her head like that, lol? Very bendy ;).
I'm sure she could if she tried! She's very flexible! 


She still looks exactly the same!!! Kass and Kam don't look anything like their baby pictures, but Kennedy is identical to hers, just bigger! LOL
I agree! I was looking back at these pictures thinking, "OH my goodness, she still makes these same faces!" hahaha


She sure was a little baby, and very bendable even with the neck. OUCH that hurts to think she slept like that. Can she still do that? I am assuming it was because of her neck issues is why or how she could do it but do not know for sure. 
She can still bend her legs like that I think, but probably not her neck... she lost some range of motion after her surgery... there are lots of pins, wires and titanium plates in there! 


How fun!! Who is the singer/songwriter, and what will they do with the video?
His name is Earl Arnold and he's been in the Christian music industry for years in different capacities. His plan is to take the video and get it out to churches nationwide (and he said he has some connections with the Jerry Lewis telethon, I think?). We will see what happens!! 


What a cool experience for all of you! That is amazing how much Katie and Kennedy resemble each other. Please post the video to your site when it's finished, I would love to see it.
I will for sure! I can't wait to see it myself! :)


Oh my goodness! He was and still is such a cutie pie. I love those is brown eyes!
He is definitely going to steal some hearts one day but hopefully that will not happen for about 30yrs or so. LOL!!

LOL 30 years?! That would make him 34!! I hope he finds someone before then! ;)


Great question and great answer!!
I was wondering if you chose to have an amnio with Keeghan's pregnancy? Do you think it would be better to be prepared for a DS diagnosis before birth, or deal with it after the baby is born? 

That is also a great question and I really have two different answers. Or maybe three different answers! HA! First, I know several parents whose babies were diagnosed with Down syndrome prenatally and many (but not all) of those parents have said they wish they didn't know. They have said that it made their pregnancy more stressful... they feared the unknown and there was nothing to "fix" in a sense (like heart issues for example) until the baby was born, so it made it harder. Now, the grass is always greener on the other side. I wish I would have known prenatally with Kennedy. I wish I could have researched and read up and found online forums of other parents who had kids with Ds already and looked at pictures of their children leading normal lives so when they handed me all that outdated paperwork from the 70's in the hospital I could have laughed in their faces! LOL I'm sure I still would have stressed, but I did anyway (because that's what I DO, I'm a stresser!). That being said, when we decided to have Keeghan we decided that even if he were born with Down syndrome, we would be absolutely 100% ok with that. If we weren't, we wouldn't have gotten pregnant. So, I did not have the amnio and in fact I declined the AFP (aka Triple screen or quad screen) as well. It simply didn't matter to us. What did matter to us however was whether or not he had heart issues, so we had  level 2 ultrasound done just to make sure his heart was ok. We knew that the hospital on Post (where he was supposed to be born) could not accommodate a baby with severe heart defects so if there was anything going on in there, we wanted to have my OB care transferred to a larger hospital. Thankfully all was well. Towards the end of my pregnancy I ended up with cholestasis of pregnancy so my care was transferred anyway. Ahhh! Never a dull moment! :)


Keeghan is such a ham! What a cutie! On a completely different note, as I was typing that into my iPod, the auto-correct changed Keeghan to jewfish. How weird is that? And what the heck is a jewfish?? LOL! 
I know! LOL It does that to me when I'm texting, too!!! LOL I cracked up the first time it did it! It also changes Kass to Lass and Kam to Jan! HA! SO annoying! And according to google, this is a jewfish! I think Keeghan is much cuter! ;)
Please know that this is an honest question coming from someone who is adopting, and who is going into it knowing full well the complications and emotions that may arise. I appreciate and 'listen' to you.
I will try to answer your questions the best I can... please remember that every child, every baby home is different... 


Seeing the photos of kellsey, I am wondering, after so much time, how you are all doing?
We, as a family, are doing ok. We have had a really rough year and there have been extenuating circumstances that I really cannot go into that have made it more difficult that necessary. Some days are easier than others.


I know that you have spoken of difficulties in regards to her attachment. Do you believe that this is a result of her time in the orphanage? Do you believe this is simply 'kellsey?'
Yes. To both. I believe that some of it can be attributed to her time in the orphanage... she had a rough first three years of life and attachment disorders are common. I believe some of it is most definitely just Kellsey. And that's not to say that anything that she is going through is her "fault" in any way. She has a lot going on with her that needs attention. And of course, developmentally she's about 2 years old which means she's going through her "terrible twos" which is always fun! ;)


What, if anything, have you investigated to improve her connections to you?
We tried to get her help here and unfortunately the resources here are... not very good. Her pediatrician is wonderful and has given us some ideas about what is possibly going on with her... which wasn't a huge shock to us. We are anxious to get to Colorado and hopefully get her the help that she needs. We have heard great things about the resources available there and are hopeful for her future.


Knowing what you do about her, would you change anything about her adoption? For instance, time spent with her when you brought her home? How you interacted with her?
I don't think there's much I can change about the time I have spent with her... besides the time she was in school, I am always with her. I definitely would have done more research into the therapies I sought out for her. We went backwards instead of forwards. We'll fix that when we move. I'm sorry, I feel like I haven't answered this like you wanted, but I'm not really sure what you're looking for here.


For all the challenges that she has brought, if you could, what would be the one thing that she has brought that outweighs those challenges? 
She has taught us that there is always something worth fighting for. She has made me bring out my "mama bear" and fight for her, for our family, for what's right. She's opened our eyes to other disabilities - with Kellsey it's not "just" Down syndrome we're dealing with... it's Reactive Attachment Disorder and possibly more. It's pulling her out of "her world" and hearing her giggle when we haven't heard it for days. And cherishing those moments. And it's made me realize that other people, on the outside looking in, will probably never understand. They'll probably never "get it". They'll never understand why she is happiest when she can just sit in "her spot" in the living room and obsessively draw circles on her magna doodle for hours, ignoring the world going on around her. They'll never understand how she can go from happy and charming one second to sulky and withdrawn then next without any provocation. They'll never understand why, even though she's having a blast swinging in the swing, she doesn't smile, doesn't laugh, but doesn't want to get out either. She just is. And so, I stop explaining. It does me no good. I can talk until I'm blue in the face and no matter what I say, I am in the wrong. But we know we are doing the very best for this very complex little girl who we do not understand. We are hoping that we find the right doctor in Colorado who can help her (and help us help her) reach her full potential. I have a feeling Kellsey has a lot to teach us... I'm just not sure what all that is yet. Either way, I know it's going to be quite the roller coaster ride! 


Wow, scary stuff. Hopefully she'll be okay. Wonder how she picked up a staph infection? I know they can be pretty much anywhere though.
Who knows?! Sometimes I think it just stays in her body permanently! 


For the shh, shh, shh... If the noise is bothering her enough at night, a white noise machine can help greatly with 'blocking' the noise. You can either buy a cheap machine or place a fan on medium. 
Well, now that she's on the medicine, she hasn't mentioned the noise again, so I'm guessing it's gone? She does have a fan in her room that runs all night though. :)

Remembering Angel Charlie... and a word about cancer...

Four years ago today, our little friend Charlie went home to Jesus when he finally beat his battle with Acute Myelogenous Leukemia. I will always be thankful for having met Charlie... he walked us through the myelosuppression unit at Vanderbilt Children's Hospital. He taught Kennedy all the songs during music therapy time. He showed us the wonder of swallowing horse pills covered in butter. You would have had to see it to believe it. He pulled us out of our hospital room and into the hallway where we made friends... a lot of friends. His parents are now some of our very best friends, and today our hearts hurt with them as we remember their precious little boy who should still be here, running around with the rest of our kids, bossing around his big sisters, and probably still being Buzz Lightyear's biggest fan. We will always miss Charlie terribly and promise to keep his memory alive forever.

I know this is not quite the same, but take 5 minutes to watch this video about melanoma. Skin cancer can be deadly... and this cancer, unlike Charlie's, is preventable. Please watch, tweet, Facebook and pass it on to those you care about. It's 5 minutes that can save a life, because no parent should ever have to know the pain of losing a child - especially to cancer.




We love you, Charlie, and we miss you so much! To infinity and beyond!

Monday, June 27, 2011

Infection!

A few days ago, Kennedy came up to me, pulled back her hair, on her left side and said, "Mom! You hear that in my ear?! It's going shh shh shh shh shh! You hear it?!"

I said, "No Kennedy, I can't hear anything, does your ear hurt?"

"No, it's not hurt!" She replied, "It goes shh shh shh shh shh like that! You hear it? Listen!"

Of course I couldn't hear anything and since she had no fever and said that it didn't hurt, I figured she had water trapped in there from her bath or a recent time in the pool. She mentioned it again a few more times over the next day or so, but always insisted that it didn't hurt, and didn't have any other symptoms.

Then on Sunday when I was combing her hair I noticed that she had a bunch of junk sitting in her ear canal. I figured her ear drum had ruptured, since we recently went through this with Kellsey. I asked her again if her ear hurt and she said no. Later she popped out with spots like this all over the left side of her face and she also randomly had a few on her left thigh. Strange!


SO I took her into the doctor this morning and she was pretty sure it's staph. She cultured the stuff in her ear and lanced one of the spots on her thigh that was the worst and put her on a heavy duty antibiotic, it's one that  covers MRSA, which is what the doctor is assuming she has. Thankfully Kennedy feels fine! The only thing she ever complained about was the sound in her ear and the one bad spot on her thigh hurting. She's had bad bouts with MRSA in the past so I'm praying this antibiotic will knock it out quickly! We have to drive half way across the country next week and need her to be well!! Never a dull moment around here!

A Day at the Park

Saturday morning we got up early and went to a local park at 9am. Anyone who knows us well knows that is just way out of character for us. Going to the park is somewhat normal, but 9am? On a Saturday? Not normal! It was for a good reason though as we were finishing up filming for the music video from the day before.

However, on our 5 minute drive to the park, it started raining. Rain and video cameras don't really mix well, so the cameraman called it quits really fast! The families that were there from our local Down syndrome group though stuck around for awhile once the storm let up and talked for a bit while the kids played. Thankfully I had my camera so I snapped a few shots of the kids. :) It didn't take long before it started raining again and we had to pack up and get moving, but it was fun while it lasted!