Saturday, April 28, 2012

NUVO

Kennedy took part in her first dance convention today called NUVO in Denver. I had heard about these conventions from other moms at our studio, and when this one was announced a few months ago, I asked Jeni, Kennedy's teacher, if she thought Kennedy was ready to go. They had a half day convention for newer, younger dancers, and Jeni thought that Kennedy might be ready to take it on, so I signed her up.

This morning as I got Kennedy ready to go, we talked about what her day would be like. When I pulled out her company warm up suit, she was convinced she was going to compete! HA! We got to the convention a little early so she could check things out... and WOW was it a little intimidating and overwhelming! There are a ton of very serious, very experienced dancers there. Kennedy watched in awe as I looked for familiar faces. Finally we found our peeps and settled in.

Kennedy had several friends in her classes, so that helped a lot (for me as much as for her! haha). They started out with 45 minutes of jazz, which is one of Kennedy's favorites anyway, but this teacher was SO super fun! She had the kids engaged and moving and taught them a cute little routine from The Lion King. Kennedy kept up pretty well and even got to be Simba. haha

After jazz they moved right into 30 minutes of tap with a different teacher. This is not Kennedy's favorite form of dance, but she tried hard... and liked it a little. HA! After tap they moved into 45 minutes of ballet with yet another teacher. He made sure Kenn kept up which was nice. She wore out in the middle of this class... partially from just being TIRED and partially because ballet is not one of her favorites either. ;) After a quick bathroom break and a juice box, she was ready to keep working though, and she tried hard and listened well.

They finished up with 45 minutes of hip hop (which made Kennedy very excited) and they learned a great routine. The teacher was awesome and I was amazed at how fast all the kids picked up the steps! I hear he's coming to the studio this summer to work with the kids more which is awesome! :) Yes, jazz and hip hop... that's definitely where my girl's heart lies.

At the end all the kids got a certificate of completion for their hard work. It was quite the afternoon! I am so glad that I signed Kennedy up! I wasn't sure how she would do or even what to expect really, but she did great and had a BLAST!! We got to the car and she said, "I want to do that again tomorrow!" HA!

Here are a few pictures... I took some video too but it's not uploaded yet. I'll try to get it up tomorrow. :)
The Kemper Dance Academy Girls before all the teachers wore them out! ;)

 Kennedy with the jazz teacher

 The KDA kids with Ivan, the hip hop teacher 

 Learning their jazz routine... 



 See Kenn being lifted? LOL She was Simba. She loved it! haha

 Stretching in Ballet 

My nose used to be able to touch my toes once. Or not. 

OK That's all! All the kids are sleeping soundly... for some reason Kennedy didn't even argue about going to bed tonight. How about that! ;) Night all! 

Friday, April 27, 2012

Remember Me?!

I think I got lost for a few days! We have been settling back into routine here... sort of. The kids have had all these wacky days off school for teacher development and testing and stuff like that which throws off everyone's schedule and I've been trying to get myself reorganized... which never REALLY happens, but... you know. I try. :o)

Then blogger decided they would change their layout. I hate change. Every time Facebook changes something I get angry and threaten to leave... but of course I don't because then I would have no adult conversation, ever! (Sad, I know.) So now blogger has changed their layout and I keep logging on, looking at it, and logging back off again. Change makes me tired. LOL So here I am yelling at blogger for taking me out of my comfort zone, knowing full well that in a month or so I won't even remember what the old layout looked like. Whatever! LOL

Anyway, all is well here. My mom and I have been busy shopping for two very special birthday kids who have birthdays very soon and then my printer died so I got a new one today. I really like it so far! I can print from my phone! Neat-o! (I'm easily impressed, I know.) I cleaned out Kennedy's closet and moved out clothes that are too small to put into Kellsey's closet which means I now need to go through her clothes and get out the ones that are too small and pass them on to other people. Yet both girls still have more clothes than they know what to do with... how does that happen?!

We are on the countdown to the end of the school year! I am SO excited! I love summer and lazy days and not having to get up and go-go-go! Of course, around here, this also means that it's IEP time for Kennedy and Kellsey. We had Kellsey's kindergarten eval today. She will not be going to school with Kameron, Kennedy and Keeghan because she needs a little more help than their school can offer her, so I got to see a whole new school and meet a whole new team today. They were all very nice and spent lots of time going over Kellsey's needs, allergy restrictions, and stuff like that. Even though she is not where Kennedy was academically when she started kindergarten, they said that Kellsey will spend most of her time in the regular kindergarten classroom (with a 1-1 aide of course). I'm just in awe how this district is run. I'll know more after her official IEP meeting in a few weeks, but I am hopeful for Kellsey's kindergarten year and excited about the team she will have working with her. She showed off her true attitude and sassiness today as she bossed them all around and showed them who's in charge. HA! Kennedy's IEP for 2nd grade is also coming up very soon. Her year will look a lot like this year I'm told, which is fine by me. They have been thrilled with the progress she has made this year... I think they said she has gone up 8 reading levels?? Something like that. It's amazing! She has just blossomed this year. I'll post more about both girls after their IEP meetings.

Kassidy has 3 more soccer games and Kennedy has 1 dance convention (tomorrow) and 2 more competitions and then both activities will wind down. Kennedy will still dance through the summer, but not quite as much as she has been lately. Keeghan's trying to decide if he wants to try out for the competition team next year or not. I think he would do great, but we'll see! Kameron has chosen not to go back to Tae Kwon Do (he took a break while he was in his school play) so instead he has decided to do a one week intensive drama camp at a local church here in June. It's led by semi-professional actors and teaches the kids a lot of the different techniques of acting. I think Kam has been bitten by the acting bug. ;o)

Frank is doing ok in Afghanistan... he's been working long hours and is now working nights so we keep missing each other... he is working when I'm awake and I'm sleeping by the time he gets off work. I do not like this schedule one bit! Hopefully it won't last long! Speaking of deployment, remember my donut?? It started all red and now look...


It's getting greener and greener!! 

In July Frank will be home for R&R and we will head to California for some MUCH needed R&R!! We can't wait!! Bring on the sunshine... and the beach... and Disney... and In-N-Out! Oh yeah, we are California dreamin'! :) 

More later... and I promise, I won't take a week to update next time! ;)

Saturday, April 21, 2012

Q&A #239

May I ask if she is at one of the Childrens hospitals? (my son was going to have to go to one up there and Im just looking for a reference :)
Yes, she was at Denver Children's in Aurora. Before this happened, we had only been to Denver Children's once and that was for dermatology where she was diagnosed with her anhidrosis (she doesn't sweat). All of the girls other specialists are either here in Colorado Springs or are at Rocky Mountain Children's which is also in Denver. Kellsey's GI in Denver is now Dr. Kramer and he is really nice and seems really knowledgeable (at least about button cell battery ingestion!). I also really liked the GI assigned to her here at Memorial (Dr. Kurbegov). She was very kind. I am hoping to get Kennedy into her for follow up on her colitis issues so we don't have to drive all the way to Denver. That ALL being said, I really LOVE all the specialists we've seen at Rocky Mountain Children's... everyone there has been so friendly and knowledgeable about everything... though we've never had to see GI there. :)


Wow that's so scary ! Did you ever figure out where Kellsey got the batteries from? 
No... I don't think we'll ever know for sure since she can't tell us and we were travelling and in SO many different places that whole week. Just the other day one of my friends on FB was sitting in an airport and looked down and saw one of these batteries sitting on the seat next to her... she took a picture and tagged me in it. Kellsey could have easily picked it up from the airport terminal while we were waiting to fly to Philly. Who knows? 


My 95 year old grandmother lives around the corner from the Art Museum location and raves about it. I went to visit yesterday and we tried to go for dinner but they were closed. I never realized that her Sabrina's is your Sabrina's. Such a small world! 
That IS a small world!! I love it!! Who knows, we could have been eating there at the same time at some point! ;o)


Can she drink tea? Chamomile tea is suppose to be great for the esophagus...don't think it would hurt to try, you can ask her doctors if she's allowed tea. God Bless! 
Nope, she's not allowed any liquids by mouth because of her severe aspiration. This is the main reason she has her g-tube. I don't think it would have the same effect if I put it in there. ;o)


really could she be any cuter? Where did you get that shirt <3 it 
We got it last year when we went to The Miracle Party last year. One of the vendors there was selling the shirts. They had lots of great ones but that one was my favorite. 


 Will Kellsey be getting regular MRIs to check on things? How often? 
Yes... I'm not sure how often at this point, I guess it will depend on how her healing progresses. I know she'll be repeating the MRI, the endoscopy and the test where they put the NG tube through her nose and put barium down (I don't know what that's called). Her first MRI is scheduled for May 8th. 


i know you are so relieved your mom was able to stay longer (didnt you say she was going to have to go back?) 
I know you all will sure miss her being around. 
Dont you think she should just look for a house near you? I mean it would be closer and in HER best interest, right? LOL

Yes, she was originally scheduled to go back on the 14th, but she extended her trip, thank goodness! She doesn't want to move here because she's afraid the Army will move us again... otherwise I would definitely try to convince her of that! ;o)

Monday, April 16, 2012

Five Years Ago Today...

Five Years Ago Today...

Kennedy was two years old.

She had been sick for awhile, but no one was really sure what was going on...

A virus perhaps... causing her platelets to tank.

Causing her to be tired. All. The. Time.

Causing her hands to cramp, making her drop her toys and cry out, "Oww!"

Finally, causing her pediatrician to send us to the hematology/oncology clinic at Vanderbilt Children's Hospital which led to a bone marrow aspiration.

Five years ago today I got the phone call that my sweet little girl had Acute Myelogenous Leukemia.


And our lives were changed forever. 

Today, we celebrate her. We celebrate Kennedy's life and how thankful we are for the blessing of her. 


One more month and this beautiful girl will be declared "Cancer Free!"
Thank you, Jesus!

Thursday, April 12, 2012

Q&A #238

First of all, if you have sent me an email in the last 3 days and have been waiting for a reply, I am SO sorry. My email won't let me reply to anything except by phone which isn't exactly the most convenient way to reply to things! I will get back to you as soon as I can!!

Glad you're out of ICU and Kass doesn't have another broken wrist. Was it the same one she broke before? While it not being broken is a good thing sprains they say take longer to heal. That was definitely my experience so hopefully she's feeling better.
Actually it's her left arm this time which is actually better because it's not her writing arm. She's doing ok with it just wrapped up... it's bothering her some, but not enough to keep her off the soccer field! ;)


Why haven't they given her TPN if they are so worried about gastro feeds? I would think I'd be the first option considering the concerns they are expressing. 
They talked about that briefly, but that would require a PICC line which is a whole other ordeal so they wanted to avoid that if at all possible especially since she DOES already have a g-tube in place. They said that many times kids who swallow these batteries end up having to get a g-tube or an NG tube put in at some point, so Kellsey really had an advantage in this case. She would NOT have been happy about an NG tube! 


For some reason Keeghan's face in that last picture cracks me up! its Sweet but goofy at the same time!
That pretty much sums up Keeghan - sweet but goofy! ;)


Did they give you a timeline? Like if she does fine to a certain date she'll be okay?
Not REALLY, especially since we don't know exactly when she swallowed the batteries, but they said they'll be watching her at LEAST for another couple weeks before they'll feel confident that she will be ok at home. 


Wow.. prayers are with you.. how's Frank taking all this... Keeping you in my thoughts..
He's doing ok... worried about Kellsey, of course, and frustrated that he can't be here, but he's glad my mom is here to help and thankful that she's in good hands in Denver. 


We would love to send Kellsey a care package, could we send it to Denver hosp?  
Probably. I meant to ask about that when I was up there today and forgot. I will ask when I go back up in the morning and get an address... just please don't send her anything she can put in her mouth!! 


How in the world can we help. email me if we can do anything...gas cards, food, etc. anything. 
I think we are ok right now... the hospital gave us some gas cards and they gave us some food vouchers for me or my mom for the cafeteria there. They have all been wonderful. As for home, we're just trying to keep the other 4 on track as best as possible with school and sports and dance... now... if anyone knows how to build a volcano for Kassidy's science class, that would be awesome! Just kidding... sort of. ;)


 Just curious if Frank is going to be able to come back home on leave? I know if I were in your shoes, I'd hope my husband were granted emergency leave. 
Emergency leave is only 10 days, and Frank's unit is aware of the situation and is willing to send him home when I place the Red Cross call, but they will ONLY give him the 10 days, so we're waiting to see if it would be more important for those 10 days to be used later. We don't want to bring him home now, have him go back, and then have something bad happen and really need him here, you know? So right now while my mom is still able to be here and we have a system down, we're saving that leave should we REALLY need it in the near future. 


Have you looked into an ipad? It is a wonder and she might like it. It has many "drawing" programs for kids and video/movie(netflix access).
We've talked about iPads for both girls because of the educational apps, but for Kellsey, until she gets over her phase of throwing, banging toys together, putting all her body weight on them etc, it's kind of pointless right now. It would be broken on day one. One day though! 

Sunday, April 8, 2012

Happy Easter!!

We hope you all are having a wonderful Easter with your families! The kids had fun this morning going through their Easter baskets and then we went to church. Now we have a ham and potatoes in the oven and our tummies are grumbling! I am hungry! :) Here are a few pictures from 4 of the 5 Special Ks... Kellsey will get her basket later... the Easter Bunny had to get a little creative since she can't have candy right now, but I think she'll be happy with the toys in there. :)








More later... 

He is Risen!!

Friday, April 6, 2012

Q&A #237

HEY!...if you go to a different Shriners don't go to Sacramento, come to St. Louis!! 
They didn't give me that option lol. I think they picked the closest two to here that has ortho. We'll see what happens! 

I was wondering ( please forgive me but I dont have experience with DS children) if Kellsey and Kennedy will ever be capable of living on their own once they are adults or will they always require lifelong care and assistance ?
Many adults with Down syndrome live on their own, hold down jobs, get married etc. Their level of help from family varies depending on their needs. I don't know the future for either of my girls, of course, anything could happen. I DO see Kennedy living on her own someday and/or getting married (probably not to Justin Bieber though! haha) and doing whatever she sets her mind to doing. Kellsey has a lot of other medical issues that will probably prevent her from ever living totally on her own... it's hard to say for sure at this point of course, but there are lots of great group home settings where she can go and have roommates and someone looking after them to make sure they're safe. We'll see... somehow I think both of the girls will be too independent to want to live with mom and dad forever. We're kinda boring. ;) 

I was wondering who looks after Kassidy Kameron and Keeghan now your mum's not right round the corner??
I just left Kassidy in charge. She's old enough to care for the others for a few days. 
I'm SO kidding!! No one throw tomatoes at me! LOL My mom flew in to stay with them while we were in Philly and thank God she did because now that Kellsey is in the hospital, I need her here! 

I know we talked about this before, but does your mom ever wonder why whenever she's around your house a hospital trip is always involved? ROFL (I laugh in the "you have to find the humor somewhere!" kind of way!)
I know, right? LOL Last time though she came specifically FOR Kellsey's gtube surgery so that was a little different. I'm SO glad she is here though!! 

Good thing you pushed and said something's not right Renee! Trust those mommy instincts. When do you think she got batteries to swallow? What size were they? As if that's important, lol. I am so glad that so far all is okay and hoping it stays that way and at least your mom is there to help. When is she supposed to head home? Will she be extending her stay until Kellsey is out of the woods? 
I'm not really sure... symptoms started Friday but the doc said it could have been a few days before then... we were in so many crazy places.... airports, restaurants, airplanes, waiting rooms, malls and more. Heck, she could have found them here at home before we left... who knows?? I can't find anything in my house missing those batteries, but I'll be looking more closely now! They were round button cell batteries... I'll post a picture... flat and about the size of a nickel. My mom was/is scheduled to stay until April 14th. Kameron's school play is on the 13th so she wanted to stay for that. I'm so glad!

So I was wondering how did they remove the batteries? Did they have to cut her open at all? Was it all with scopes? Just for curiosity sake. Still can't believe it. Do you think she had them in there before your appointment last week for their neck? Don't they do x-rays for that? Would it not have shown up on those xrays or are you thinking it was swallowed sometime after that? 
They did not have to cut her open, thank goodness! They had scopes and cameras and one of the scopes had a little pincher thing on the end that just goes down and grabs it... I didn't get to see it, but they were describing it to me. They think they were definitely in there for a couple days before her symptoms started on Friday and her Shriner's appt was Thursday, so yes, they would have been there (of course that's just a guess based on the corrosion of the batteries). She did have x-rays done at Shriner's but they were just of her head and the top of her neck, the picture stopped right below her chin, so it wouldn't have caught it... can you imagine if it had?! I'm not quite sure what would have happened... they probably would have sent her to CHOP. I've been running through all these "what ifs" in my mind the last few days. I even had a dream last night that she swallowed her mouth guard. I think I'm super ultra paranoid now. :o\

So glad your mom is there to help you out (did I miss something else?) WHen did she get there? or have you talked her into moving closer?
My mom came in a week or so ago to stay with Kassidy, Kameron and Keeghan while I took Kennedy and Kellsey for their annual appointment at Shriner's in Philadelphia. SO glad she was here!! 

When you talk to the GI doc, ask him if this narrowing in her esophagus from the batteries is similar to achalasia, and how surgery would prevent further narrowing. 
I will ask, but from what I understand, they think the narrowing is from scar tissue building up from the abrasion. They said this will be something we have to watch indefinitely. 

Thursday, April 5, 2012

Q&A #236

I realize these are OLD questions, but I have some catching up to do. I'll post another one tomorrow with more recent questions!


Live in Philly? Be still my beating heart!
Seriously, I was there the other night and today for the flower show and I really love it too. You really have to hit Boston at some point, though, b/c I think it slightly edges Philly out :) 

LOL Well it wouldn't be for a long, long time! ;) I really would love to visit Boston sometime. It looks amazing. Frank really wants to visit NYC as well, but I think we need to do that childless. Going there with 5 kids stresses me out big time! 


I am curious how you feel about using the word retarded to actually mean having a low IQ. The school district that I work in (Houston, TX) has recently switched from a label of mentally retarded to a label of intellectual disability. They mean exactly the same thing, just different words. Is one better than the other?
They changed it in TN as well. I don't know if they changed it here in CO or not, but I would guess so. You're correct, they mean the exact same thing. However, the term ID just sounds... less harsh to me than MR does for some reason. Kennedy didn't fall under the MR label anyway due to her IQ score, but just hearing MR makes me cringe. I was just talking to someone else about her original medical file from the hospital on the Army post. There, her original diagnosis was Mongoloidism. Seriously. So behind the times! 


Wow, I'd be afraid to touch anything in my house!! 
Right?! It keeps us on our toes, that's for sure!


Happy belated birthday! Delanie is adorable. Is that a scratch on her cheek? My youngest scratched himself in the exact same place when he was a day old. He still has the scar! But I think it's cute. 
I think it was... it's gone now. Kassidy had one just like it when she was born... those baby nails are sharp! 


OK, not the point of your post but totally the cutest picture of Kennedy I have ever seen :) 
Aww thanks! :) That was at her Valentine's Day party at school, which reminds me, you asked for a picture of her "heart hair" on FB. Here is the back... 

I agree with you but hate the few month or so when it is back to being dark again when I get up to run. I also had the birds that wake me up every single morning at 4:15 for the first couple of months.
Actually, who am I kidding? I hate all birds, not just the ones that wake me up. 
Poor birdies... what did they ever do to you?! ;o)

Why didn't anyone else comment on this? Don't think I've ever seen that happen before!
LOL Yeah we were pretty boring around here... unfortunately Kellsey changed all that. I like boring better! 

Renee, Renee, RENEE! I'm so excited! Today I was at Burlington Coat Factory (do you have those there? I know they do in TN), and I saw little girls' Easter dresses with matching 18" doll dresses! I immediately thought of Kennedy and Charlie...oh man, they were so cute. And the whole sets were $39.99, which will probably come down more after Easter. So cute! I was so excited to tell you about them! (All these little Easter dresses make me want a little girl, btw!) 
We do have them here! I will have to check it out... maybe after Easter... I'm a sucker for sales! ;) 

Glad to read you guys are okay. I know that unbuckling drama all too well! We know have a car seat that our child can buckle closed himself but cannot be unbuckled by him. Hallelujah! Just curious, does Kellsey understand when you tell her not to do that?
Yes, even though she doesn't speak much, she understands almost everything we say... she sometimes doesn't answer yes/no questions appropriately, but she knows what we're saying to her. One of these days she'll agree that staying buckled is best... right?! ;) 

Love that pic! Happy world down syndrome day, tell Kennedy to come hang out with us. Justin Bieber's hometowns about 15 min from where I live and he's often spotted at our mall, around Christmas time. 
Oh man... she would so be there! hahaha

Ellee is the same way with the pee thing. I thought she was the only one and it drove me crazy but now I will just blame it on a European thing or stage fright lol 
Well at least Kellsey's not alone! Maybe they taught them privacy in the orphanage... hahahaha