Friday, October 28, 2011

Lazy Day...

Sorry I haven't posted today... we have been getting readjusted to home routine and since Frank had the day off today, while the big kids were at school, my mom and I went out and did some shopping... we have a few birthdays coming up soon ;o). I found exactly what I wanted for one little birthday girl and even found a Christmas present too. We also got cakes ordered for parties and stuff like that. I love this time of year!

Speaking of this time of year, Halloween is Monday which is one of our favorite fun days around here! The kids costumes are all ready and they can't wait for the big day! The oldest 3 actually get to wear costumes to school here which is pretty neat. Kassidy is restricted to a theme there so hers might be a little harder, but Kameron and Kennedy will definitely dress up. I don't think Keeghan and Kellsey get to dress up, but we haven't been there in so long, I'm not sure! haha I know Kellsey will be happy to get back to school on Monday.

Kass is off tonight with a friend at her church for movie night, and the rest of the kids are running around except Kellsey who fell asleep in her dinner. I think she got used to napping in the hospital! We are enjoying a quiet evening before a busy weekend. Tomorrow we have soccer and then my mom goes to the airport to go back to TN. We'll all be sad to see her go.

Anyway, I'm going to watch this movie and head to bed soon. The morning will be here way too soon! Hope everyone had a good Friday!!!

Wednesday, October 26, 2011

Q&A #220

Now is she going to have surgery for her g tube insertion? If so why such a long hospital stay? 
Yes, it's for her G-Tube (though you've probably figured that out by now. haha) Day 1 nothing could go through her tube so it could heal and drain. Day 2 (today) they are going to run pedialyte through it. Assuming all goes well, tomorrow they will run Pediasure through it on day 3. During all this they will be training me on what to do, setting up home health etc and being that she is doing so well we may actually get to go home tomorrow which is exciting!! We were thinking we may be here until Friday! But we'll see how the pedialyte goes today before I really get my hopes up. 


Oh I do have a question! Since they are bringing troops from from afghanastan and Iran, will Frank still be deployed and for a whole year? I hope this will stop him having to go there but have no idea about all that. 
Yes he leaves the beginning of 2012 and as of right now they are still saying a 12 month deployment. 


why is kellsey having to get a gtube?
For a couple reasons: To help with her severe aspiration. We were having to thicken her liquids a LOT to keep her from aspirating. This was making it hard for her to stay hydrated. She also has some eating issues... some sensory, some behavioral, some related to CIPA and the fact that she doesn't taste food or feel hunger, so eating is a totally social thing for her... and she does so only when she chooses thus making weight gain an issue for her. She's almost 5 and only 25 pounds. SO this tube will help her gain weight and keep her hydrated. She will get NO liquids by mouth at all to eliminate the worry of aspiration and she'll be getting 100% of her calories by the G-Tube, however, she will still be able to eat by mouth when she wants. This still keeps her in the habit of eating but takes away the struggle of food between her and Frank and me, which is a huge relief! If she chooses not to eat now, no big deal. I can feel assured that she is still getting all her calories via her tube and there's no battle and no stress on either of our parts. 


What's a cake walk? I am imagining all sorts of things lol! 
LOL you must not be from here! :o) So people donate a bunch of cakes or pies or cupcakes and then there are a bunch of numbers taped to the floor. Everyone stands on a number and then music is played. While the music is playing, everyone walks in a circle (kind of like musical chairs). When then music stops everyone stands on the number closest to them and then someone chooses a number from a bucket. The person standing on that number wins and gets to go pick a cake. It's lots of fun! The kids school stepped it up even more and made them dance as they were walking in the circle and also gave out cakes to the best boy and girl dancers for each round. They had A LOT of donations!!! The kids all enjoyed it!!


Totally of the subject but did you know that the McRib is back? I know you blogged about it before!
YES!!! I may or may not have eaten one for dinner the last two nights in a row. ;o)


I was just thinking, this is her first surgery? No wait, she has tubes and her adnoids were removed, right? 
Correct, she had her tonsils and adenoids removed and ear tubes put in back in February. 


How is Kass's arm???
It's good, the orthopedist decided to put her in a brace this time instead of a hard cast. She has to wear it for four weeks, but she can remove it to shower which is REALLY nice!! 


Just wondering if there is any concern that she will rip the tube out, especially since she doesn't feel pain? Is that a big deal? 
I am not too concerned about that only because she's a pretty passive kid. However, that being said, I'm not taking any chances. We're going to get her some onesies to wear to school and stuff to limit her access to her button. I guess I don't want to give her too much credit! haha They're going to give me an extra button and teach me how to put it back in, but I really hope I don't have to do that often!!


Glad she's doing well. How long are you all stuck there at the hospital?
Hopefully not too much longer!! I'm going to see if she wants to go play in the playroom here in a bit and get up and moving. She's really tired right now, probably from not sleeping much last night, but I think she'll feel better if she can get up and moving. 


So is it safe to say that she's not experiencing pain or discomfort (because of her condition?) I suppose that can be a blessing in disguise for THIS particular situation.
Right, she hasn't had any pain medication since right after surgery and they only gave her that because they felt like they should... and then it made her feel sick. I GUESS it's a good thing, but it worries me because if something is wrong (like infection) would we know? The only time we've known her to run a "fever" is if she's overheated from not sweating. We have never seen her run a true fever from being sick (because she's never truly been sick) and even when she had her ruptured ear drum, she never rain a fever or cried from the pain, so that part of it kind of concerns me. Don't get me wrong, I am glad she's not in pain right now and is just chillin in her bed, but sometimes pain is a blessing when it lets you know something is not right. 

Pardon my ignorance, but does the button look BIG to me (compared to others I've seen) or is it just the close up coupled with the drain that is confusing me?) 

I think it's just because of the drain... that is kind of big. The button itself is pretty small. I will take another picture once they unhook her today. 


I don't know how you will be feeding her. Over night via pump or by hand but, you might find these helpful I really suggest the pads for her first time. Since she can't feel pain, she might rub at the area while she gets used to it and the pads will cushion her skin.
Thank you! I didn't even think about that! She does sleep in footed pajamas every night and will be on an overnight pump... I didn't even think about access to her tube through that! She'll also be getting 3-4 bolus feeds a day. Hmmm... I think I will order some of these. Thanks! :o)



I have some personal questions about Kennedy so I understand if you don't want to post this comment or answer them I understand.
Does Kennedy know that she has Down Syndrome and what that means? How did you explain it to her? Also, Kennedy seems very high functioning. Do you think it is because of nature or nurture? What is her IQ?

At this point in time, she doesn't "get" that she has Down syndrome or that she is any different than any other kid. I think she knows that she has to work harder than some of the other kids in her class, but I don't think she knows WHY. It's interesting because we were watching one of our shows last season "Parenthood" and there's a little boy named Max on there with Autism. His parents were raising money for an Autism walk or benefit or something because of Max and he got excited and said, "Yeah! Let's help those kids with Autism!" The parents were shocked that he didn't realize they were doing this for HIM so they sat down and explained that he had Autism. It was very heartbreaking and real and "Max" asked some hard questions. (His character was a few years older than Kennedy... 10 or so maybe.) Eventually, I DO think Kennedy will GET that she has Down syndrome. I know there are MANY self advocates with Ds who talk about it all the time. Right now though, she's just a "sincess" or "Hannah Montana" or "Rocky" or whoever she chooses to be for the day. We talk about Down syndrome a lot in our house, especially when we go to Buddy Walks or do other events, but we work so hard on making sure that everyone else treats both the girls the same as the other kids that we don't really want to point out to them that they're different, if that makes any sense. I think Kennedy is doing very well in a lot of areas. There are some areas, where of course I think she could be doing better, but I'm her mom and I want the best for her! I attribute a lot of how well she is doing to Early Intervention. I will sing their praises forever! She started therapy at 3 months old and TEIS was amazing. And of course part of it is just WHO Kennedy is... for better and for worse. Her upside down e's for example... I worked on those with her, her OT worked on those with her, for over a YEAR to no avail... and then one day she just started writing them correctly and never looked back. And she has always been like that with every milestone... she doesn't get it, doesn't get it, doesn't get it, but then, it clicks and she never looks back. Part of it is nature, part of it is nurture, part of it is just... HER. Her IQ is 69. That being said, I totally hold NO weight in IQ tests done on children with Ds done so young... so take it for what you will. ;o)

Monday, October 24, 2011

Accomplishments of People with Down Syndrome (Part 9)

OK so this video is long. We're talking 12 minutes long here! BUT seriously, you need to meet Luke Spinelli. He is a high school senior with Down syndrome and he is awesome! This is his senior project showing his path to independence and I think he's doing a pretty dang good job. Let me tell you, when I was a senior in high school I didn't do some of the stuff he's doing... like ride my bike to the YMCA! (Or... you know... exercise! *ahem*)

I love Luke's sense of humor and his outlook on life. I would love to know more about his academic career and what that looked like.

Anyway, take the 12 minutes to watch. Kennedy watched it with me and said, "He's kinda cool!" I would have to agree! :) It was nice getting to know you, Luke!


Sunday, October 23, 2011

Still Here...

I'm still here... we've been enjoying the beautiful weather this weekend. Yesterday I took Kameron and Kennedy to the Fall Festival at their school. It was a lot of fun! Lots of games, food, prizes and stuff. Kameron ran off with some friends from his class and he said he liked the dunk tank best. His principal was up there for a little while. I don't think he actually threw any balls, the line was really long, but he watched for awhile. Kennedy loved the cake walk the best. The line was long for that, too, but after she played all the rest of the games, we spent the rest of the night going through the line for that cake walk over and over! HA! She brought home some cupcakes and Kam brought home some cookies. It was a very fun night and I think they both slept well! ;)

Today we went to church and then my mom, Kassidy and I went out shopping for snow gear... because well... look at our forecast this week:

Yep, Wednesday looks fun! ;) So grandma bought all the kids snow boots in preparation for Winter... or ummm... Wednesday. Whichever comes first. She may have bought me a pair, too. ;o) Thanks, Mom! :) We were looking for snow pants too, but only found some for Kassidy, so we're going to try to find some for the rest of the kids tomorrow.

Anyway, I am off to watch a little TV and then go to bed! I hope you all had a wonderful weekend!

Saturday, October 22, 2011

Accomplishments of People with Down Syndrome (Part 8)

Today we are continuing to talk about amazing athletes with Down syndrome... those who have wanted something so bad, gone after their goals, and succeeded... and in the meantime made a bunch of friends, changed some hearts and opened the eyes of everyone they encountered!


I can't believe I didn't include a dancer in my last post, but wait until you meet Nicole Smith! She is one of the most gracious and beautiful dancers I have seen in a long, long time! Watching her makes me want to let Kennedy go to dance every day just so she could maybe get to Nicole's level someday! She's truly inspiring! Nicole has been dancing since she was 6 years old and practices several hours a day, even when she's not on the dance floor. She also holds down a job to help pay for her dance lessons. Watch the video, read the article, she rocks!













This beautiful girl is Thalia Arbelaez. She has been dancing since she was 2 years old and now travels the globe doing shows and modeling. Thalia is a student at Patel Conservatory where she works hard and is breaking stereotypes every day. "If dance classmates initially judge Thalia when they see her, their opinions disappear when the class begins.
She said Thalia's dancing is infectious and inspires other students to do better themselves."
"When we start the music, when we start the class," Downey said, "all that just melts away." Thalia is a wonderful self-advocate and I wish her the best in her dance career!! 

Ross Barron is a high school soccer player... part of the team. He's been playing soccer since he was 5 years old, and it was always his dream to play in high school as well. his coach took him on, and his teammates loved him! They called Ross' head, which was bald from Alopecia, their good luck charm and rubbed it before every game. During Ross' senior year of high school, the coach set it up with the other team's coach for Ross to score his first goal during a game. Both teams and hundreds of people in the stands cheered him on when Ross made that goal. His coach literally cried tears of joy, and then Ross cried some tears of sadness realizing that his high school soccer career had ended. Next year he will be back though to be the assistant coach, and he plans to eventually go to college. Best wishes to you, Ross! May your college career be as successful as your high school one was! :)








Todd Claeys has overcome 3 heart surgeries, but that hasn't stopped him from being an amazing hockey player. He is a senior and has been playing floor hockey for his high school the whole time he's been there. He also runs track and field for Special Olympics, and he inspires everyone around him. Watch this video and read the article to learn more about Todd! 








This is Lauren Miller ice skating at the 2011 Special Olympics Skating Expo - Lauren has Down Syndrome and is 13 years old. She has been skating since she was 6 years old. Lauren is also Global Messenger for Special Olympics Illinois. I've never been on ice skates in my entire life, but I promise you, I could never do even half of the moves Lauren does! She's awesome! Way to go Lauren!! :)





OK I think I've given you enough inspiration for the day! Watch for another post in a couple days! :)

Friday, October 21, 2011

Q&A #219

Love all these athlete "spotlights". I may have to 'steal' them for a 31 for 21 post ;)
Feel free!!


You should look into this program and see if there's a squad in your area. 
There are 3 in CO, but none near us. What a neat program though!!!


Did you know Carrie and Sujeet are divorced now? I found that out last year, or maybe it was earlier this year...made me sad. But I guess its just like the 'typical' marriages; divorces can happen amongst people w/Ds too.
You know, I thought I had heard that too, but I couldn't find anything online backing it up so I didn't want to post it and be wrong! That is sad, but statistically speaking, I guess it's bound to happen. :( 


The good news is you will be laughing about this someday - so will Kassidy. 
I told Kassidy this and she said, "Today is not that day!" LOL 


Are you doing Kellsey's GTube at Presbyterian St. Luke/Rocky Mountain Hospital for Children?
No, actually that will be done right here in Colorado Springs at Memorial. I have heard amazing things about her pediatric surgeon. :) I think she will be in good hands! 


YAY for Kennedy being 100% in remission! Is there such a thing as being in remission but not 100%? I am not asking that to be funny, I seriously would like to know.
HA! No! LOL Sorry for the confusing wording. You're either in remission or you're not... kind of like being pregnant or not. I guess I was just excited. :o)


So did you get you order the glasses that the guy didn't like? Bad momma if you did. I have found that getting another opinion is better! (LOL) I wish I had taken someone with me when I chose my present glasses. If they didn't cost an arm and a leg, I would get different frames.
No, I didn't get them! LOL I figured the guy who worked there must know better than me, especially since I tried about 20 pair of frames on her! hahaha I hope I chose the right ones... they're pink and she doesn't wear a whole lot of pink, but they really did look the best on her... I think. LOL 


Also, since you guys go up to Park Meadows Mall on occasion, did you know that Mile High Down Syndrome Association is having a Halloween party this Saturday? It's not too far from that mall. There's a little more info here: http://mhdsa.org/events/index.html It'd be fun if you could make it! :) 
Thanks! Kass has a soccer game on Saturday and Kam and Kenn's school has a fall festival that day too, so we're all booked up, but otherwise we would have loved to go!!


How's Kennedy doing oncology wise? I guess maybe that question will be best answered after her next appointment, but I hope she's doing well :) 
Just great! We're on every 6 month visits now. :)


I think Rocky Mtn ENT is by Presbyterian/St Lukes. 
YES! That's it! Thank you! :o)


Very touching stories! I am curious though, do you know of any people with DS that have married people without DS? 
Yes, I have heard stories of people with Ds marrying people with other disabilities, like autism. I have not heard any stories of a person with Ds marrying a typical person... but that doesn't mean it hasn't happened... 

Also, if 2 DS people have a child together, will it definitely have DS?

I know that women with Ds can have babies and have a 50% chance of having a baby with Ds as well. MOST men with Ds are sterile according to NDSS, although I have heard of 2 men with Ds who are fathers. I would guess they would have the same 50% chance of their child having Ds... so the chance would be very, very high. 

I am curious too if these adults with DS actually have the cognitive awareness of marriage and responsibilities of adulthood or is it just like two children marrying (mentally)?

From the couples that I have met, yes, they absolutely understood love (and all that marriage entails intimately), the responsibilities of marriage and even living on their own (or whatever their arrangement is). They each held down jobs, paid their own bills (sometimes with a little help), cooked their own meals, cleaned their own houses, etc. They may have more of a written out schedule than a typical couple, but they definitely "get it". 


I was wondering if you were considering getting her tubes tied when she is older like so many other families have done for their DS daughters? It seems from what Ive read that they dont want to take chances with a pregnancy. What are your thoughts on this?
I'm not sure yet what I'm going to do about puberty/fertility issues for either of the girls yet... nor do I think it's solely my choice. When we lived in TN we had an awesome doctor at the Down syndrome clinic who said she would do whatever I wanted when it came to "that time" for Kennedy. She would completely stop her periods if I wanted or whatever. At this point, I feel like Kennedy will probably be able to handle that part of it. I'm not sure about Kellsey. We're still a long way off... thank the LORD! Many young women with Down syndrome realize that they cannot care for a child of their own and choose a permanent form of birth control. This will be something that we will discuss with the girls when the time comes. Because of the chemotherapy Kennedy was on, she may never be able to have children anyway. So, all that to say, I don't know how I feel about it yet. LOL And I'm glad I have a few more years before we really have to start thinking about it. 


Are there any stories that you know of of people with Ds parenting?
We recently ran across a picture of a family... the mother has Down syndrome, the father, we don't think does and we're pretty sure the baby does not. However, there's no story to go with this picture. We've searched and searched for the story behind this beautiful photo and cannot find it. I would love to know their story. I personally have not heard of anyone with Down syndrome parenting. 


Questions - What happens at these National DS conferences? Are they weeklong, weekends? Do you need to be a member to go? I hear of them often on other blogs, and on forums, but can you shed some light on what they are all about and are they worth going to? How much do they cost? Are the national ds congress and the national ds society the same? 
These conferences start on Fridays and run through Sundays. They change locations every year. When you register for the conference, it includes a membership to the NDSC, so technically, you DO need to be a member to go. They're pretty expensive... It's a couple hundred to register plus airfare, plus hotel... and they always seem to pick a REALLY expensive hotel. *sigh* However, the experience is amazing! For one weekend there is just this community of families just. like. you. People with Down syndrome of all ages everywhere! There are breakout sessions on every topic imaginable and the hardest part is deciding which session to attend. They have a dance where everyone gets really dressed up, especially the older kids with Ds, and they party! We've been to two: 2005 and 2006. (In 2007 Kenn was doing chemo, 2008 was spine fusion surgery, 2009 we were saving to go to Ukraine, 2010 Frank was deployed and life was crazy and 2011 we were in the process of moving.) Next year it's in Washington D.C. and Frank will be deployed again so we probably won't go, but if you get a chance I definitely recommend it!! NDSC and NDSS are not the same. They are both national Down syndrome organizations and they both do great things, but the conferences are sponsored by the NDSC (the Buddy Walk was started by NDSS). Hope that helps some! :)

Thursday, October 20, 2011

Cast Free... or NOT!

So, like the majority of my blog posts, this post was pre-written and set to publish for right now. However, I am now editing this post and NOT for good reasons!

Yesterday Kassidy got her cast removed after a very long 4 weeks! I know in the grand scheme of broken arms that was a short journey, but she was SO ready to have it OFF, and... you know, wash off the nastiness! ;o) Her arm is a little sore and a little bruised, but they said that was normal and the more she uses it the faster it will get back to normal.

One last cast picture of her red cast

Getting it cut off...

No after picture because she said her arm was gross. 

THEN I said, "Hopefully we won't have to deal with broken bones again for a long time." WHY did I say that?! So today around 10:00 I got a phone call from Kassidy's school nurse. Never a good sign. Kassidy was in an assembly, and she stood up to wave to a friend. When she started to sit back down, the boy next to her pulled her chair away, and she fell. Her instinct was to brace herself of course... with her arm. Her right arm. The same one the cast just came off of. And it snapped. *sigh*

So I picked her up and called her orthopedist on the way. They couldn't get her in until tomorrow so we headed to the ER where they did an x-ray, and sure enough, it's broken in the same spot that it broke before. Another buckle fracture. Grr!! I was so angry!!! So she's back in a splint for now and ortho will decide tomorrow if she needs to go back into a hard cast. 


After we left the ER, we went back to Kass' school to get her backpack and stuff and I talked to the Dean of Students about this boy Timmy who pulled Kass' chair out from under her and he said that he called his parents and he's being punished but he wouldn't tell me what his punishment was exactly and then he went on to say that Timmy is a "good boy" and that "you know how 6th grade boys are" and asked me if I have boys of my own (like that makes a difference) and then said that if Kassidy hadn't just come out of a cast that her wrist probably wouldn't have broken. So glad he knows that. Grrr! He was making me angry so I just bit my tongue. He did say that he would have Timmy apologize to her tomorrow... so that better happen. I get that kids do dumb stuff, and one day one of my kids may do something just as dumb without thinking. I just hope that his parents will talk to him and make him realize that Kass got hurt by this prank, whether he was trying to be funny or mean or whatever, and that it could have been much worse. 

SO now Kass will probably be in a cast through Halloween and her birthday, which stinks. :o( And if this is a case of a boy trying to flirt with her, and she ends up marrying this boy someday, I'm never going to let him live this down. Just sayin'. ;o) OK really this time... no more medical stuff till Monday... I hope. 

Accomplishments of People with Down Syndrome (Part 7)

Well, we've covered famous people with Down syndrome and college and weddings and homecoming king and queens, so today I'm going to focus on athletes. As you know, Kennedy loves to dance. She's been dancing since before she was walking, and the girl has some moves! ;) This is her first year dancing competitively, and she's enjoying every second of it from the routines, to the costumes, to the camaraderie of the matching warm up suits complete with rhinestones. Kennedy works hard in dance and asks every day if it's Thursday so she can go to class. Who knows where her dancing will take her, but these individuals should show you that anything is possible! :)

Chelsea Werner is a star gymnast and a cheerleader at her high school. Take one look at her in the video below and you'll have NO questions why she holds those two titles. She's amazing!!






Mike Bailey is an accomplished special olympian in several sports! He swims, runs, does weightlifting and much more. Over and above that, he goes to college and holds down a job. Read Mike's story and see pictures of his Olympic journey! I know you'll be as impressed as I was! :o)






And we're back to Sujeet Desai again. I can't talk enough about this young man! Actually, I'm just going to let HIM do the talking for this section, because he says it better than I ever could! "I have been doing the martial art "Tae Kwon Do" for last 7 years. I won the Bronze medal in the NY State Tae Kwon Do tournaments in 1994. November 7th 1998 was the big day in my life as I earned the black belt. Now I am working on for the second dan. I participate in different sports all year. I love alpine skiing, swimming, cross-country running and bowling. I won many medals in state tournaments for each of these sports. Most memorable sport event was in North Carolina World Games'99 special olympics, where I won two silver medals in aquatics." That's quite a list to add to his many musical talents!! You are an inspiration, Sujeet! 


This is Deborah Law, as of 2006 she made her 4th appearance in the National Bowling Stadium and her 13th in the United States Bowling Congress Women's Championships. Deborah has been bowling most of her life with the rest of her family, and my hope is that even in 2011 she is still going strong! 








Arielle Brantley may be following in Deborah Law's footsteps. She joined her high school bowling team and lettered her first year out. Her teammates are cheering her on as they watch her game continually improve. One of her friends and teammates has this to say about Arielle: "She's awesome," said senior teammate Amber Ronan. "She always knows how to cheer us up. No matter what (score) she gets, she's always glad to bowl." Her mother on the other hand, talks about the struggle she's had with the school to have Arielle included in academics, though she won with a fight! She went on to say that in the athletic field, they've always been more willing and accepting of Arielle... no fight needed. Be sure to watch the video on the article about Arielle! It's a good one! 








Megan Bomgaars is from right here in Colorado... and that makes one of my new goals to meet her someday! :) From the sounds of it, she and Kennedy have a lot in common. Megan has dreams of being famous, being on TV, and... being a cheerleader. When she began her freshman year at Evergreen High School, they told her she should try out... so she did. And she made it. Now she has lots of friends, goes to sleepovers with her teammates and has a very busy social life. As far as being on TV and being famous? Well, she got to do that, too! Megan went with her team to the National Championships which was televised, and thus fulfilling one more of her dreams. Be sure to go read this heartwarming story, see what Megan's teammates have to say about her, and why she's a very influential member of the squad. 








Brad Hennefer is a member of his high school basketball team... He has made considerable contributions to his team, and like other stories, his teammates had nothing but good things to say about Brad. One teammate said, "Brad is pretty unbelievable," Berlinsky said. "I know people can be cruel, but Brad carries himself in such a respectful and mature way, he never really faces that kind of stuff, at least not here. Brad is probably the most popular kid in the school." Beyond playing basketball, Brad is a New Jersey Special Olympics Golf Champion and helps his father coach kids with disabilities in his spare time. Be sure to go read about Brad and meet this awesome young man! 






















OK I have a few more athletes I would like to highlight, but it's going to have to wait until next time! ;)

Wednesday, October 19, 2011

Down Syndrome Awareness!

This is a precious video full of pictures of kids with Ds and lots of GREAT info and facts about Down syndrome as well. It's all info you've probably read here and there if you've been reading here long enough, but it's good to have it all in one place... and the cute faces make it MUCH more fun to watch! ;) You may even see a couple beautiful little girls that you know in here.



Tuesday, October 18, 2011

Kennedy Update

OK last medical update for a little while (I hope!). Kennedy saw the ophthalmologist this morning. She got her eyes dilated and had to identify funny black shapes on a screen lol. The doctor looked at her eyes and her prescription changed just a bit so she gets new glasses, much to her delight. She had already found fun new frames in the eyeglass shop that were "gorgeous!" (I'm glad she thinks so!). Her glasses will be ready in a week and of course I'll post pictures of her new look!

This afternoon Kennedy had a check up with oncology. I really like her new doctor and all the staff there! They were all very nice. The doctor spent a lot of time with us getting Kennedy's history and I told him what's been going on with her recently. He pulled all her records from the hospital to go over and it turns out that her blood work from yesterday is back in completely normal range, so since she hasn't had a fever since yesterday morning and has only complained about her tummy hurting once since then, we're going to chalk it up to a weird Kennedy thing for now. It wouldn't be the first time that she's had a quirky infection happen. He said if her fever returns or if her stomach pain comes back really badly again to get her back in, but for now he's not concerned, so neither am I! So strange!!! Most importantly, she is still 100% in remission and we don't have to go back for 6 months! :o) When we go back in April we'll be at her 5 year from diagnosis mark. Crazy! I am praying hard for a completely BORING rest of the week! ;o)

Thanks again for all your prayers for Kennedy, they worked! :o)

Accomplishments of People with Down Syndrome (Part 6)

Until recently, maybe in the past decade or so, marriage between people with Down syndrome seemed... unlikely, at best. Recently though, it has come to the limelight, and more and more couples with Down syndrome are successfully getting married (and sadly, as goes with today's society, sometimes getting divorced) all the time. Here are just a few couples with Down syndrome who have tied the knot.

If you have HBO on your TV, you've undoubtedly heard of Monica and David. Their reality show highlighting their lives, and their wedding, has taken the country by storm. I'm not sure if their series is still on because we don't have HBO, but definitely check it out if you have time!





Paul and Andrea were the first couple with Down syndrome to marry in Britain in 2006, and it didn't come without a fight. They had to prove to many nay-sayers that they understood what love and marriage meant. But they did it and now live in a beautiful one bedroom flat (that's an apartment for us Westerners) ;) Be sure to take the time to read their incredible love story. It will warm your heart.





So for this next story, I have a little more of a personal involvement... though the couple in question has no idea. Meet Austin and Christi. They met at the National Down Syndrome conference in 2004. Christi, who was from California and Austin who was from Texas, instantly bonded. The next year I attended the same annual conference, this time in Anaheim, California. Kennedy was just over a year old and my mind was blown by all of these people with Down syndrome, doing completely normal things... hanging out with friends and driving cars, and... you know... walking! ;) So I was in this hotel, in line for coffee, and behind me was Christi. I talked to her while we waited. She indulged my silly questions while she played with Kennedy. My last question to her was, "Do you have a boyfriend?" I was grasping onto every sense of normalcy and a future for my daughter that I could. She smiled at me and said, "I do! He's going to be here later!" Just then someone tapped her on the shoulder... she turned around and exclaimed, "Austin!" and threw her arms around him. And I stood there and bawled like a baby, watching these two young people, so obviously in love, embracing one another. I totally intruded on a private moment, I'm positive, but Austin and Christi will never know what they did for me that day. They helped me realize one more dream for my sweet baby girl was absolutely possible. And so, to run across this article, to catch up on their lives, even though they don't know me from anyone else, makes me feel like I'm catching up with an old friend... and I'm so thankful they are happy, doing well, and living their dream.

Alex and Alexis met in elementary school where they were classmates. They had an instant connection, but when Alex's family moved away the two lost touch. Then in high school, Alex was featured in a newspaper article. Alexis' mother saw it and encouraged her to call Alex and invite him to prom. And the rest, as they say, is history. On April 26, 2008 the couple was married. You can read more about Alex and Alexis' love story here.




Heather and Tyler are another beautiful couple with Down syndrome who know the meaning of love and of the phrase "in sickness and in health". Tyler and Heather met at a Special Olympics event and hit it off right away. When Tyler fell ill in 2010 with pneumonia, Heather never left his side. Their parents realized then how committed they were to each other and promised them a wedding once he recovered. And that's exactly what they did. We wish them a lifetime of happiness!





I've mentioned Bernadette Resha in a previous post about her many accomplishments, but she's also known for her marriage to Josh. The couple first met when Josh was 2 and Bernadette was 5, and they were the first couple with Down syndrome to marry in Tennessee. I had a chance to attend their wedding but was out of town and couldn't make it. I heard it was beautiful though. You can see some images here. Sadly, due to circumstances beyond their control, Josh and Bernadette are no longer married, though I have heard they remain friends.

Another high profile wedding was that of Carrie Bergeron and Sujeet Desai. They were engaged shortly before the NDSC conference in 2006 in Atlanta. I happened to be there when Carrie arrived. She came down the escalator where 5 or 6 of her friends were standing there talking, and when they saw Carrie they all shrieked in excitement. "Let us SEE!" They all said. Of course they wanted to see Carrie's engagement ring, and like any newly engaged young woman, she showed it off with all the excitement in the world. She was glowing! Later, before one of the conferences where she and Sujeet would both be speaking, I heard her tell him that she had laid his clothes out for him on the bed and he better go get ready. He smirked at her and said, "Yes, Dear." :) Time Magazine covered their wedding (they had 2... a traditional one and a Hindu ceremony) and wrote a fabulous article about the accomplished couple. Be sure to check it out!

These are only a few stories out of many, many couples with Down syndrome all over the world who are forming relationships, falling in love, and getting married every year. As the years go on, that number will increase, and hopefully my girls will be included in that statistic if they so choose... I may or may not already have great husbands picked out for both of them! ;o)

Monday, October 17, 2011

Kennedy Update (Part 2)

OK so today was very long! I was waiting for 8:00 this morning so Kennedy's ped's office would open and I could make her an appointment. However, they called me at 7:45 and said they already had an appointment for her at 9:00. Easy enough!

When we got in there, her ped pushed around on her tummy and Kenn didn't seem to be in a lot of pain so he wasn't real sure what to think. He decided to go ahead and do an ultrasound of her tummy and repeat her blood work to see what it said, however, the u/s had to be done after fasting so they couldn't do it until the late afternoon because she ate breakfast, of course. So we headed home with strict instructions not to feed her or give her anything to drink. I monitored her blood sugar closely and my mom and I tried to keep her occupied until it was time to go. It was a fun day.

At 3:30 we went into the u/s where they asked me if her bladder was full. I said, "Ummm no... I was told no food or drink." And they said "Well the food part was correct, but she has to have a full bladder for the pelvic portion of the u/s." Lovely. I just deprived her of liquids all day for nothing. @@ So they did the first part of the u/s while she guzzled down water and then they did the pelvic part. After it was over they told me the results would be back to her ped in 3 business days. I said, "What?!" I explained they were trying to rule out appendicitis and said that might be a little long to wait. She said that's just how long it takes and I said ok, left to go to the lab for her blood work and called her ped. They said they would call me back.

After we were done with her blood work I got a call back from her ped's office and a nurse told me that her u/s was normal. I asked if it was truly normal or if they just couldn't see her appendix like on the CT and therefore was inconclusive... she said she didn't know, I would have to talk to her ped. I then asked if it WAS really normal, then what? Why were her counts so high? Obviously something is going on... She couldn't answer that either and said I would need to talk to her ped tomorrow. He'd already gone home for the day.

So, we don't have results for today's blood work, and we still don't know what's going on with her stomach, but for now I'm going to say it's NOT appendicitis. And that's good news! Tomorrow she goes for her check up with oncology, so maybe they'll have some ideas. Or not...

Q&A #218

I know this is kind of past your post's date but I just realized- "Wait, Kellsey left that mask on all night?!" and just had to ask!
Well... sort of.... it was off and on at different times during the night. She took it off to eat of course and I think it was off during the limo ride and pretty much the last half of the night. She did pretty well with it though. ;)


My friend's 6 year old son, with several pulmonary/ENT issues, regularly sees specialists at National Jewish (not sure if that's the hospital Kellsey's ENT works out of) and they LOVE it! They've also seen specialists at Denver Children's and have had good experiences there. We live in Lincoln NE and have a children's hospital about 45 min away in Omaha...and they refuse to go there!! They LOVE the hospitals in Denver!! Well worth the 7-8 hour drive, or the money to hop on a plane in their opinion.
Well that's good to hear!! I seriously can't remember the name of the hospital with their ENT... it's Rocky Mountain ENT if that helps. There's a hospital RIGHT next to the building that they're associated with, but I have no clue what it was. We were more concerned with figuring out where we were going that day. I THINK that is where Kennedy will have her ear tubes put in on November 1st though so I'll be able to tell you then. ;) I really, really liked their ENT though, she was great with the girls and really spent a lot of time with us. :)


HAHAHAHA girl I cannot believe that you spent all that time in TN and didn't see more tires with chains on them. :) Must have been an East TN thing because I saw it all. the. time. My mom said that they used to put chains on the tires of the school bus when she was little. :) 
Nah, no one drove around Middle TN with chains on. We never got a lot of snow, just ice, and then everything shut down anyway so there was no need to go anywhere and therefore no need for chains! LOL 


Hi Renee, I'm not sure if you've tried this, but sometime chiropractic adjustments can help with constipation as well. Might be worth a try. 
Ugh anything chiropractic scares me (sorry to all you chiropractors out there!). I would really have to get permission from Kellsey's orthopedic surgeon in Philly before I took her for any kind of adjustment or anything anyway. He might not be very happy about that since she has AAI. I tend to leave her spine area alone... don't want to play with fire!!


Regarding constipation ~ a lot of us moms with kids who have spina bifida use Fletcher's Laxative to help. It's root beer flavored. I don't know if it would have anything in it that Kellsey could not have, but here's a link to the ingredients so you can check it out. It's sold at Wal*Mart and works really well.
Thank you! I checked out the ingredients and it looks like that might work for her! I will pick some up and give it a try! :) 


Did they mention "Nephrogenic Diabetes Insipidus"? it is a kidney disorder that causes diabetic symptoms, but has nothing to do with blood sugar/diabetes. I have had this several times when on certain meds. And, 3 times when they have no clue as to why I developed it. I was in ICU every time and had seizures due to high sodium levels.
They haven't yet... hopefully we'll be hearing back from Mayo Clinic this week and they'll have some sort of answer... and hopefully it's something easy to fix!! 


How is Kass's arm?
It's doing ok! She actually was supposed to get her cast off last week, but her wrist has still been bothering her so they decided to leave her cast on (they actually put a new cast on) for another week or so just to make sure it healed well. They did an x-ray though and said it all looks good in there so they're not sure why she's still having pain. It's not bad pain, just uncomfortable quite often. It could be from lack of use! She gets this cast off on Wednesday and then hopefully once she gets that wrist moving again the last little pains will go away. I took some pics of them removing her last cast, but I need to get pictures of this new cast before it comes off. She got a red one this time... her favorite color. :) Thanks for asking!!


I remember reading somewhere that they had a British TV series about the life of DS. Kinda of like a real world series...can't remember the name of it. Was wondering your thoughts on it and whether you've seen it.
Yes, The Specials (thanks for the link, Racheal, it saved me some searching!). I have heard of it before, maybe right when it came out, but I never watched it. I just went and checked out their website and their bio videos and the highlights of season one. It looks like a cute show, and as a parent of children with Down syndrome there were some things in there that made me smile and made me proud... the fact that they're all going to college (except one who works full time) is great! The fact that they're living on their own and involved in relationships (albeit drama filled haha) is awesome! Isn't that what a lot of typical 20 something men and women are doing?! I haven't taken the time to watch the full episodes, but I hope that the producers and directors are portraying this show in a positive light. I can see where people who don't have kids with special needs and just don't "get it" could find the negative in it, but then again, I guess those people will do that no matter what. It looks like there was only one season of this show... do you know if it got cut? On a side note, Hilly reminds me of Kennedy in 15 years or so... loves to shop, loves shoes, loves purses and will always find time for a manicure! haha! 


Will she drink cranberry juice? I thought I was getting a UTI earlier in the week and I had Joe pick up a bottle of cranberry juice and I felt so much better after that. It might still be good to have her drink along with the meds. Can't hurt ;). 
Hmmm, I'm not sure if she will or not. She probably would, she's my least picky child... but it has to be straight cranberry juice, right? Not the cocktail? Maybe I'll have Frank pick some up and try... if nothing else, I like it and I'll drink it. ;)


Sounds like you have an episode of Hypglycemia yourself.
Have you been checked out for this yourself?

No actually, and I've never had trouble like that before. It was so strange! Like I said, anything medical, up until through the time I was pregnant with Kassidy, used to make me pass out cold. Even talking about needles or IVs or anything, I'd be flat out on the floor. People who knew me then and still know me now are amazed! haha So I don't know if it was just what they were telling me that got to me, because it really wasn't that bad! LOL Or if it was a blood sugar thing, because I've gone all day without eating before when I've been out and running, but it was quite strange! I knew what was about to happen but I also knew I had to stay with it at least until Kennedy's CT was over, and I'm glad I did! One of these years I'll go meet my doctor here, too! ;)


I'm sooo glad she's feeling better, and it wasn't appendicitis! When I DID have appendicitis, that stuff you have to drink for the CAT-scan is NA-AS-TY! EWWWWW! I don't remember much about that CAT-scan b/c I was so out of it b/c of pain, but I think they just stuck the lower half of me in it. 
I wondered how it tasted! It was completely clear, like water, and Kenn didn't seem to mind it. She was SO thirsty though and the urgent care doc said she probably shouldn't drink anything in case they had to operate so when they handed her the cup she slugged it down and they had to tell her to slow down so it didn't make her throw up. Thankfully she kept it down! But she's always been a pro at taking nasty medicines and even her nasty oral chemo and never really minding. They just did her lower half too, I'm pretty sure. 


I did a double take (read?) when I read that she's moved on from Hannah Montana? Adorable answers! 
I know, right?! She still talks about Hannah sometimes but that's usually music related. It's mostly iCarly, Ant Farm, Good Luck Charlie and Rocky and Cici (sp?) from Shake it Up now. Long gone are the days of Dora. *sniff*


The woman with Chris Burke played Corky's girlfriend (later wife) in Life Goes On! 
Oh wow! I didn't know that! How cool! :o)


Did they do an ultrasound on her? That's what they did to try and dx Kaia but couldn't find anything but went ahead with emergency surgery to see what they could find and once they went in they found her appendix ready to burst. 
No... they said the CT was more definitive than an u/s... which I guess maybe it would have been if the dye would have reached her appendix area, right? I wonder if that's what they'll try today?? 

Sunday, October 16, 2011

Kennedy Update

So the doctor that Kennedy saw in the urgent care on Friday night just called us from his home. He was checking up on Kennedy through the hospital notes to see what happened after she went to the ER, and read the doctor's notes there and decided to call me. He wanted me to know that Kennedy does NOT have a UTI after all. The results of her cultures grew out and they are negative.

So just to be clear, the dip stick test at the urgent care said no UTI. The lab test at the ER showed white cells in her urine and so they said she DID have a UTI (I didn't know until today it was just white cells that they saw) but now the culture grew out and now they are saying she does NOT have a UTI after all. Is your head spinning like mine is yet?!

However, her WBC is really high and there is a shift in her neutraphils (and just hearing him talk neutraphils made me want to puke) which is indicative of a bacterial infection somewhere... that coupled with the fever and her stomach pain still has him concerned that it could be appendicitis which is now "smoldering" thanks to the antibiotics. She still has a low grade fever today and is still complaining off and on about stomach pain, but nothing like she was on Friday night, but that could be due to the antibiotics.

He made sure to point out as well that the CT scan was inconclusive because the contrast never reached the area where her appendix is so they never actually saw it one way or the other... then he went on to explain how kids with Ds have slow gastric motility and sometimes don't feel pain the same and you and I would, which made me smile because we know about that ALL too well!

SO he wants me to make an appointment with Kennedy's ped tomorrow. He is faxing all this info over to his office today and he said if I can't get her in in the morning to bring her back to the ER for further evaluation. He's 100% sure that we're barking up the wrong tree with a UTI and he's really concerned that if we're covering up appendicitis with the antibiotics, something bad could happen. He made me promise that if she gets worse tonight that we'll bring her back to the ER right away, which of course we will. She seems to be doing ok for right now though. He said that he would say a little prayer for her that she would be ok. I just want to hug that doctor! What a nice man!!

Anyway, I guess we're going back to the doctor tomorrow. I'll keep you posted. I'm still hopeful it's something simple that just hasn't been caught and NOT her appendix.

Accomplishments of People with Down Syndrome (Part 5)

Did you know there are famous people with Down syndrome? Well, there are. Probably the most famous is Chris Burke, and if you grew up in the 70's and 80's you knew Chris as Corky from Life Goes On. For many people, back in those days, Corky was the only person with Down syndrome that we "knew". Beyond being an accomplished actor, Chris also plays the guitar and sings with his band. He was also one of the spokesmen for the NDSC and went to all the conferences... He even got to meet Kennedy in Anaheim in 2005. ;)


The young woman with Kennedy and Chris is also an actress and appeared many times on 7th Heaven and other shows. The one thing that I remember about her is picking up her purse and car keys and telling everyone she was "out of there"... and she drove off... in a convertible. Yep. Living the life! ;)


Jane Cameron was born in May 1949. As you can imagine, the world for people with disabilities was a much different place then. Jane's parents were told that she would never accomplish anything and that an institution would be the suitable place for a child like her. Thankfully her parents didn't listen. When the school that Jane was going to decided that children like her were not worthy of an education, they didn't listen again... and they found somewhere else to enroll her. Jane went on to art school where she became a chief designer. Many of her designs were turned into huge tapestries that still hang in places all across the world today.

Jane's parents, and other parents of children with Down syndrome from that generation, paved the way for our children today. They helped show the world that our children are smart and capable of anything, if only people are willing to give them the chance to succeed. 


Sujeet Desai is no stranger to the Down syndrome community. He is an accomplished musician who graduated from the Berkshire Hills Music Academy in 2003. Before that, he graduated from high school with a 4.3 GPA... and all I'm saying about that is, it was higher than mine. *ahem*. I could go on and on about Sujeet, but I'll let you explore his website and find out more about this incredible young man for yourself! Be sure to listen to some of his performances, as well. You'll be glad you did! 


Michael Johnson is one of my favorite artists! He has a large following and many famous people have commissioned his paintings over the years. I must admit, I've always wanted to commission an original Michael Johnson painting, but ummm... I can't afford one! LOL Go check out Michael's gallery and see his long list of accomplishments at the bottom of his site! 


Bernadette Resha is a young lady who I've had the privilege to meet several times. She is poised, elegant, a very stylish dresser, and a world-known artist. I have loved admiring her artwork and talking to her and her mother and about her life, career, and seeing that she is just a typical young lady. She is truly amazing and I know that she can and will accomplish anything she sets her mind to in life. Be sure to check out Bernadette's gallery... see if you can decide on your favorite of her paintings, because I surely cannot, they're all fabulous! :o)


Jacob Halpin is just like any other high school jock... his picture shows him looking cool, sporting his letterman's jacket, and showing that he's accomplished something. And he has! Jacob is a high school varsity athlete that holds all state honors in swimming and diving. He was the first handicapped swimmer to qualify for the championship finals in the 1999-2000 state meet. As far as anyone knows, no one with Down syndrome has broken his record. 

These are only a handful of successful people with Down syndrome in art, music, athletics and more. While they had to work hard to accomplish their dreams, it took a team of support standing behind them to tell them, "We believe you CAN!" It's amazing what a little faith and determination can do.