Tuesday, May 29, 2012

Kennedy's Oncology Appointment

Today Kennedy had an oncology appointment. This was a check up for both girls. Right now Kennedy goes every 6 months and Kellsey goes every three. I was thinking that today was the day that Kennedy would be declared "cancer free". We were told that would happen 5 years after she went into remission, which is about 2 weeks from now. However, they said today that it's actually 5 years after her chemo ended so we have to wait until mid-September to get that official status. Her counts looked GREAT today though, so in September we plan on partying! ;) One more appointment down!

Sunday, May 27, 2012

Q&A #241

Thats funny that you say the boys look just like Daddy. Here I always thought Keeghan looked so much like you!! 
Aww thanks!! :) 

Found a cell battery in the remote for our electric heater (looks like a fire place) and in the remote to our digital picture fame.
We have one of those digital frames too... I checked our remote and yep... Thankfully the back is HARD to get off, I even had a tough time getting it off. They're everywhere I tell you! 

Renee. I was wondering if you have read Kelle Hampton's book, "Bloom" yet , and if so, could you relate to Nella's birth story? It seems you both were surprised at birth with a DS diagnosis and I can only imagine how scary that was for you both. 
I have not read her book... I have read her birth story though on her blog. There were some things I could relate to and others I could not. I could definitely relate to the fear and shock of the Down syndrome diagnosis. It's definitely a scary thing when you're not prepared. Good thing God knows what He's doing! ;) 

Kennedy looks so pretty with her hair pulled back like that! It looks like they had a great time! 
Thanks! I'm still getting used to it, but she pretty much tells me how she wants her hair now, so as long as she likes it, I'm happy! ;)

As I was reading Keeghan's birthday post, I noticed that Kellsey had a baggie in her hands. Was she eating mini marshmallows? Oh, I don't like to write anything negative, but please be aware of how she chews them. I know she's older and probably does fine with eating, but if there are any swallowing issue with Kellsey, then I want to make you aware of the dangers of marshmallows and choking.
Yes, that's what they were... we were having a hard time finding her a gluten free "treat" while she was on the soft food diet. We watched her closely and she did fine with them. Thanks though! :) 

Just a question...I work in a jewelry store and I remember when Kellsey had her ears pierced. Does Kennedy have hers done too? When did she and Kassidy have theirs done? And did Kellsey let you keep hers in? I know we have a LOT of parents of young kids complaining that kids yank the earrings out...not sure if your girls ever did? 
Yes Kassidy and Kennedy both have their ears pierced as well. Kassidy got hers done when she was really little... like 2 months old. Kennedy was just over a year old (in fact it was Memorial Day Weekend just after she turned one). We had to wait for her ear lobes to be big enough lol. None of the girls have pulled them out (but we've never used ones that dangle either), but Kass and Kenn both react to any earrings that aren't 24K Gold. I can't remember the time Kass wore them, but she is most definitely NOT my girly-girl! ;) Kennedy wears them occasionally. I took Kellsey's out before one of her surgeries (her g-tube I think) and never put them back in and they got lost :(. I need to get her new ones. 

Also, as I recall, those retainers break easy. It doesn't take much, but as my orthodontist also told me...QUICK CLICKING IT! LOL
Oh my word, I tell Kameron that ALL the time. Drives me bonkers! LOL 

Thanks for sharing this and being open about the whole issue. I only knew how dangerous these things were because a pedoaudiologist pointed it out when my son got his first hearing aids.
Yes! My friend's little boy has hearing aids and he is forever taking them out. I know it freaks his mom out since Kellsey showed them what they could do! 

Have you considered getting her homebound services? That may be an option at some point.
I've actually thought about talking to her ped about that to see what he thinks about that. I have heard from lots of parents that it's a fight to get them approved though. It's definitely an option at least in my mind. 

As for the OTHER rockstar, Miss Kellsey, I know you worry, it's just your mama bear nature. Maybe this will give her an opportunity to learn and grow? Maybe she can make some friends?
Right, in the right setting I think she COULD, but I just think this setting is setting her up to fail... or injure. It's hard to find the balance between keeping her safe and letting her grow. I struggle with it every day. 

Question though. Does kellsey speak? I was user the impression she was not yet talking? 
She has a few words and approximations... "Hi, bye, baby, dog, book" and a few more, though they're not always consistent. She's at about a 12 month level with her expressive speech which is another reason I believe she needs a smaller environment and not be in a regular Kindergarten classroom. 


Could a teacher come to the house for Kellsey instead, or could you maybe swap homeschooling with another mom with a kid who also has RAD?
Also, is RAD a permanent condition? Will she ever learn to bond with you and your family? In what ways does she not bond with you ?

According to her doctors, RAD doesn't just go away. Some kids with RAD can learn to bond, but there's really no telling what the future holds. She is on medication to try to help, but so far there's been no change. Some day I'll do a whole post on RAD and Kellsey and how it pertains to us, but it would take WAY too much typing today. 

Saturday, May 26, 2012

IEP Meetings (LONG)

Ahh the joy of Spring... IEP meetings are always the hot topic in the Down syndrome community - to include or not to include? To fight or not to fight? What does LRE really mean and is our school doing it RIGHT? How do I get my child the services appropriate (not best) for him/her? Do I push for my neighborhood school or send my child where the district wants him/her? What about repeating a grade? Is that good or bad... do I even have a say in that matter?

OH yes, IEP meetings are FUN. You go in with your stomach in knots, try not to cry when they tell you just how far behind your child is and try not to rip their heads off when they assume that they know your child better than you do and argue with you about what's best for them. How's that for a run on sentence? ;)

Thankfully, Kennedy's IEP meeting was easy peasy. I've been feeling her team out for a few weeks now... I have spent this last year building trust, because you know... once bitten... I figured out quickly that we're all on the same page with Kenn, which helps A LOT. We all agree she's had a fabulous school year. She's made lots of friends, her speech, writing and reading have improved a ton! She struggles most with math (and dreads math class, math homework, and everything else math related), but if you catch her in the right mood, she'll do it. She lines up when coming in from recess almost 100% of the time now which is huge! She thrives on positive reinforcement, loves to learn (especially when she "gets it"), and loves to perform and dance just about any time she gets a free second. HA! She needs to work on using kind words and having empathy for her friends. With improved speech comes the other side of the coin... she tells you exactly what she thinks at all times, whether it's nice or not. On a good note, you never have to wonder how she's feeling. ;)

Kennedy's IEP for 2nd grade will look much like this years... 90% inclusion with pull outs for therapies and some resource time (especially with math!). She'll have her same paras which makes me very happy! She has accommodations for test taking, placement in the classroom, and other things to help make her successful. We talked about different IEP goals (she mastered almost all of hers this year!) and what's most important for her learning NOW. We all put our heads together and I believe Kenn has another great year ahead of her!

As for her general ed classroom, my only request was that she goes to a teacher who wants her. There are many fabulous teachers who are not prepared/comfortable or have the want to have kids with SN in their class. I'm ok with that. I just want her to be in a classroom where she is wanted. Two of the second grade teachers have asked for her. That makes me happy. :) I have no doubt that Kenn's 2nd grade year will be as amazing as this year was. She has a strong team behind her who loves her and is cheering her on... and they believe in her. So we finished her meeting and ate pie. I wish all IEP meetings could be this way. :)

OK it's summer... no more thinking about school right now. I'm off to the mall with my kiddos! :) If you made it this far, you're my hero! ;)

Friday, May 25, 2012

The Dentist

Whew! What an afternoon! As I mentioned yesterday, Kameron had a dentist appointment after school today because he broke his retainer. They had to remove it which was not so fun for Kam as it was glued to his back teeth... or something like that. When they finally got it off he was very relieved! They are going to fix it or make him a new one if necessary and he'll get it back on next month. Now he's getting used to being retainer free for awhile.

I ended up taking Kennedy in as well to see if they could check her out... a few of her bottom baby teeth have the permanent teeth growing in behind them. We got one of them out on our own, but the other two weren't budging. One of them was causing her some pain so I just wanted to make sure everything was ok. WELL, her dentist decided to just get them both out today.

They started by using just novocaine but she was NOT happy about it. She kept telling her dentist, "You don't TOUCH!" LOL Finally he tried some Versed and when that didn't work they moved onto laughing gas. That did the trick... she was quite... relaxed by that point. One of the teeth came out easily, the other one was harder, and they both had LONG roots on them still. She doesn't remember them coming out at all, so I guess that's good! She's still a little loopy and unsteady on her feet and she says her chin feels "silly", but she's excited about the tooth fairy coming tonight. ;)

While her dentist was looking around in her mouth, he discovered that her top front tooth is loose as well. That's not good because that's a permanent tooth! He took an x-ray to make sure there was no trauma to the tooth, and thankfully it looks fine so he's hoping it will tighten back up on its own. That would be bad if it fell out!

Anyway, three hours after we got there we got to go home. Whew! What a crazy day!! Bring on Summer, I'm ready!!!

Saturday, May 19, 2012

Kennedy and Keeghan's Birthday Party

Today was Kennedy and Keeghan's birthday party... a little bit after the fact. We've all been so busy with dance and soccer and school and other things that today was literally the ONLY day in May we had open for a party! We had it at their dance studio (because we practically live there anyway! haha) and Ms. Debi set the whole party up! All I did was pick a theme and give her a guest list and she did everything else... best party ever! :)

 The Birthday Kids

 Yummy cakes from Marvel's Cake Boutique


 Treats to eat! 

 Goody Bags!

Getting excited about her party

 Hailey is teaching the kids a new dance

 Jaemen doing his thing! 

 Learning the moves... 

 And pose! 

 Mia 

 Jordyn posing

Jordyn and Hannah

 Keeghan and Matthew... Keeghan is feeling the music lol. 

 Hannah and Lila

 Freestyle! 

 Go Jordyn!

 Go Hannah! 

 Giving Hailey a thank you hug

 Cake time! 

 I'm ready to blow out the candles! 

 Making a wish... 

 Yum!

Can't smile. Mouth full.

Time for presents!

Cool!

I love it!

 Look at this!

Nail polish!

And that's all, folks! Thanks so much Debi for a stress free party! The kids had so much fun!!! 

Wednesday, May 16, 2012

HAPPY BIRTHDAY KENNEDY!!!

My beautiful Kennedy, today is your birthday! I know you've been telling everyone at school that it's your birthday every day - for months - but today it's really, truly, seriously your birthday! For real! I know you are excited to get to school today and tell all your friends, "I'm EIGHT!" and I know they will be happy for you. I can't wait to bring you cupcakes later and go out to dinner tonight.

You have grown so much this year, Kenn! You are doing so great in school and I've been in awe as I've watched the progress you've made there and at home and dance and everywhere else. You work so hard at everything you do, and I know sometimes it's frustrating and you feel like everyone else is doing things faster and better than you, but when you finally "get it", you shine so bright... and everyone sees that and rejoices with you. You have a lot of cheerleaders out there baby, more than you even know, and we're all cheering you on.

I can't wait to see what this next year holds for you... Kassidy and Kameron have officially dubbed you a "big kid" and I know you take that title seriously, so I know that this year will be another year of growth in every area of your life... just don't grow up too fast sweet girl, remember that no matter what you'll always be my Sincess. I love you so much birthday girl... a million, billion, trillion!

Love,
Mom

Sunday, May 13, 2012

Q&A #240

You might check into Windows Live Writer.. I update my blog with it. It is a free download. I never see the blogger changes and haven't had to go to the blogger site to do anything in a very long time. Windows Live Writer makes blogging very easy and it logs into blogger for you and everything. :) 
Thanks, I will check into that! I'm still not digging the new layout! LOL 


So where are you on the countdown to the end of the year? You didn't start much earlier than we did, but we go until June. So no countdown has begun here yet. I haven't even gotten CJ registered for Kindergarten yet ;). It's okay though they assured me they just sent out the Kindergarten packets today so I'll get that next week sometime probably and registration won't even begin until sometime in May. The fact that he's starting Kindergarten this year freaks me out!
Keeghan is done on the 17th and the big kids are done on the 25th. That's later than when we were in TN but we started a little later here. And ironically we didn't run out of snow days here like we always did in TN! LOL I had to get the kids registered for Kindergarten! They start in January here! I didn't get Keeghan registered until February because I lost his birth certificate (GRR!) and they were telling me he may not even get to go to his home school because I waited so long! I was freaking out because he was so excited to be able to go to school with Kameron and this will be the only year they'll be together. Thankfully the principal fixed it and even got him a full day slot (but I have to pay for that. Bleh!). Kellsey of course had to be registered early too so we could get her IEP in place and all that fun stuff. 


Is that Ivan from So you think you can dance?? 
He looks like him.
That is way cool. 

Yes... now that you say that I think they did say that's who he is. I'm so oblivious! LOL 


What does "special Angels" mean? The video is SO PRECIOUS! 
The creator of that competition (Tribute) has a relative (sibling maybe?) with special needs, so he created a division called special angels for groups that have kids with special needs in them... Kennedy's group has Kennedy of course and her friend Jaemen who also has Ds. :) Their group got to enter the competition for free :). This is the only competition that's done that so it was pretty neat! 


Did you cry? I think I would have cried. That was too cute. She is adorable! 
I did cry. Just a little... ok a lot. But only a few people saw me so it doesn't count. Shhh! LOL 


That was BEAUTIFUL!!!!! How old is she?? 
Hailey is only 11... I can't wait to see her when she's 18!! :) 


So who are you using to edit pictures? Pic Monkey? I actually think of you ever time I use it, lol. I like it a lot. Super easy to use. Pretty similar to picnik too.
Yes, picmonkey for now... I don't like that we only can upload one picture at a time though. It bugs me. Hopefully they'll fix that soon... and I need the collage feature! LOL 


I cant believe how much keeghan looks like kameron from a side profile!! Ive always thought they looked alike, but just alike like brothers. Those side profile pics of keeghan make him look like kamerons mini twin! Too cute!!
I agree!!! Sometimes I don't think they look all that much alike but every once in awhile I will catch a glimpse of Keeghan and think, "WOW... that's Kameron." Of course they are both mini versions of their daddy! ;) 


Does Keeghan attend a religious school or does his public school allow prayers? just curious!
He attends a Christian preschool :). They have chapel once a week and say prayers (actually it's prayer in the form of a song) before snack and lunch. He's learned so much there. I have some hilarious stories he's come home with that I should really blog about sometime! 

Friday, May 11, 2012

Keeghan's Birthday

I'm a little behind on editing pictures... picnik.com closed down and so I've had to find a new place to edit my pictures. You all know how I feel about change! ;) Tonight I finally decided to get some edited. I have SO many pictures that I've taken this month that I need to go through, and more to come... all in time, I guess!

Anyway, Keeghan had a great birthday! He started off with a birthday party at his school with cupcakes...
 Keeghan with his cool monkey cake... 

 He was almost too cute to eat... almost. ;)

The birthday boy!

 Singing their prayer before snack... cupcakes at 9am! YUM! LOL 

 Waiting proudly while everyone sings happy birthday to him 

Blowing out his candles

What a mess! :) 

Kellsey had fun at the party, too! :) 

Then after school he got to skype with daddy and he got to open one present so daddy could watch... 
Showing daddy his present

 What IS this thing?! 

Uhhh... well... it's green!!

 Ooooh! Toy Story Squinkies! 

 Look, dad!!! 

I'm a dragon!!! 

Then after the other kids got home from school, we headed out to dinner. Keeghan chose Red Robin. There he opened the rest of his presents from us and from Grandma! 

New monkey clothes!!

 And jammies!

 A sprinkler!! (Maybe one day it will be warm enough to use it! haha)

 A puzzle! (Kassidy was texting with her best friend in TN giving her a play by play of Keeghan's gifts! haha)

 A Terrarium! We're going to grow plants! (In theory lol) 

 New cars!

 This is awesome!

 WOW! A fire station!!

And the rest of the gang... 





It was a fun day!! Still can't believe my little guy is FIVE!! :)