Hurricane Riley and Big Brother Rex

Life Lessons

2011-12-05T20:22:00.000-08:00

Who knew that wrestling would give Rex so many life lessons. Rex has always been my sports kid. He would rather be bouncing, kicking, catching, or hitting any type of ball than almost anything else in the world. He has had a sweet spiral since the type he could walk and when he started soccer at 5 he informed me he was born to play. This year Rex was able to play flag football for the first time and also was able to test out wrestling. I love that he is into sports. I'm a huge fan of team sports and all the lessons that they teach. Being part of teams growing up are some of my favorite memories and I want that for Rex. He is testing lots of sports out and I'm sure will have a hard time choosing when the time comes. Wrestling was a first for individual sports for both of us. Rex was super excited that he was able to try it out and it was even better that it was through his school so it was lots of his best buddies.

I was a little taken back by Rex's first match. It was my very first wrestling match and wow does that experience go against all natural motherly instincts. I hate that so many kids leave the mat crying because they are either physically hurting or because they just tried their very best and still lost the match. Its rough out there. In one moment to be cringing as Rex is pinned and in the next to be cringing because your son is rubbing some kids face into the mat. I have to say I'm still not a fan but Rex loves it so we do it all again next year.

I may not love it but it is a growing experience for Rex. He has always been a nervous kid. Shy and never wanting to draw the attention of an adult or kid for that matter. You certainly can't be shy when you decide to wrestle. Just you and your opponent out on the mat in front of a crowd of over 100 concerned parents and team mates.

The end of the season tournament was this last weekend. We arrived early for warm ups and Rex was very excited for the big day. Minutes before his first match he rushed over to us to inform us that he was so nervous he was going to throw up. Serious tears, gagging and overall just a hot mess of nerves. Rex always runs nervous but I had never seen it like this before. I rushed him out of the gym in hopes of him not puking in front of his friends and Justin and I tried some fast talking pep talks make sure he new just how proud of him we were and it didn't matter if he won or not. We couldn't talk fast enough. I went into the gym and told his coach that he was having some nerve issues... coach went out to talk to him and 10 seconds later he is out on the mat. He had wiped his tears and was ready to go. I am so proud of him for swallowing the nerves and getting out there. I'm not so sure I could have done it. That first match didn't go so well but Rex rocked out the next two. He had a great day and was so completely excited and proud of himself. It was a day of conquering fears and big emotions!

Let me sqish you lil boy

Click on this one to make it bigger... the look on the other boys face is priceless. Who know Rex could squeeze a boy hard enough to make that face...

I'm sure this has a technical name... the short version is he flipped him

The PIN!!!

I love watching the kids in the background. The boy on the mat in the last shot is a 7 grader that Rex adores. He is the sweestest boy and is so kind to Rex. He gave him lots of pep talks and advise on moves. He couldn't find a better role model.

Hurricane Riley reaches Catagory 5 status!

2011-12-01T20:53:00.000-08:00

Its hard to believe that Riley turned 5 yesterday. In some ways it feels like yesterday that we welcomed Riley into our family. One look into those big beautiful eyes and we were in love! In other ways it seems like an lifetime ago. We have come a long way from those scared parents that learned from amnio that their son would have Down syndrome and looked across the delivery room to search for the proof that the test might be wrong. In an instant I knew that it was right and we were embarking on the adventure of a lifetime.

I am different. Our family is different. Our friends are different. We are all better than we were 5 years ago. Everyone that meets Riley is better for knowing him.

He has never know someone that isn't his friend. Riley has opened our minds and our hearts and challenges us to see people for who they are. My biggest fear for Riley as he grows is that people will judge him because they see Down syndrome when they look in his beautiful brown eyes. That they will decide before they know him that he must be loving and won't be very smart because of that extra chromosome. If they know him they will understand that he is loving because he has a big heart, because he is surrounded by family and friends that love him unconditionally, and he is a mirror of that love. When they know him people will understand how smart he is, they will know that he is sly and mischievous and rotten and wonderful all at the same time. This fear I have of how people will react to my son has made me look at my own life. Made me change the way I look at other people. Am I judging at a glance because of some outward sign that something is a little different that I was expecting. I am far from perfect but I know everyday Riley teaches me to be a better person.

Riley had his 5 year check up today. I love our pediatrician. She is in love with Riley and always has a way of making me feel like a rock start of a mom. Riley is amazing and I may have to enlist Dr Marla's help if the school district ever fails to see where the most appropriate setting is for Riley. We had a great conversation about his development and how typical he really is. If people have high expectations he rises to meet them.

This week Riley has been particularly feisty at school. I was out of town for work and my daily updates kept my co workers laughing. On Monday he told his teacher Miss Michelle "Listen Up "chelle... No TIME OUT K" On Tuesday every time he was asked to do something he didn't want to he said"Bummer "chelle... Bummer Alice". Yesterday on his birthday he woke up full of it and when I called to say happy birthday he says "thank you mom" and was proud to announce that he was 5 whenever he was asked. He walked around singing "happy birthday to Riley" all day. Today's report from school informed us that he was defiant and was not happy that Miss Colleen was making him pull up his own pants after going potty. He finally gave in and says "FINE COLLEEN" and then pulls them up. Riley makes me laugh everyday. Too bad I have to pretend he isn't funny so he doesn't get his way. He knows if he can make you smile he can get away with anything. If you happen to tell him that he isn't being funny he smiles and says "YES Funny!"

Happy Birthday Riley William!!! You are one loved little boy. I am so thankful you arrived to complete our family.

Success!

2011-10-31T20:56:00.000-07:00

Happy Halloween! The boys had a great night tricker treating with friends.

Playoffs Baby!

2011-10-28T21:27:00.000-07:00

We take a break in regular scheduled programming for football playoffs. Rex's team won the first game this afternoon. We play again tomorrow morning and if they win Rex plays in the Catholic Grade School Flag Football championship game. Quite the title isn't it. Win lose or draw football season is over tomorrow.

Wrestling starts Tuesday!

Lesson Learned

2011-10-27T20:54:00.000-07:00

Tonight I was taking a stroll down memory lane and reading some of my very first blog posts. To be completely honest I was hoping for some inspiration for tonight's post and I found it. I found a list of 21 things that I have learned from having a son with Down syndrome. I started to rewrite the list but seriously this list is as true today as it was 4 years ago. OK I'll admit I fixed a couple of typos and tweaked a few thoughts but the overall list is the same.

Riley has taught me some big lessons. I bet you have learned a think or two from him as well. Just for fun leave me a comment and share a lesson or two that you have learned from Riley. Ah come on you can do it. Whether you know him in real life or just through this blog you know something just popped into your head. Write it down!

1. Find a Dr. you can trust and stick with them. I feel a bit like our pediatricians are a part of the family. I see them on a very regular basis especially now that cold season has started with Asthma boy and his side kick wheezy.

2. Cliches should not be used in a time of stress. My friend Amy and I think that we will make millions when we publish the book that started with just a list of things not to say to Mary. (cause wow was I pregnant and moody when I discovered Riley would have Down syndrome) Since Amy and I run neck and neck for the coveted Drama Queen title we have a list for most crisis situations.

3. Who my friends are. I have some really amazing friends.

4. How much my mom means to me. Growing up I don't ever remember not liking my parents like most teenagers do but we have certainly grown much closer in the last several years. I don't know how I would have managed to get Riley to therapy twice a week for the last year with out my mom's help.

5. OT, PT, Cognitive therapy - and a zillion other ways to "play" with Riley to help his development. I think we should rename it all and call it Play therapy. Maybe it would seem so over whelming if I was just headed to play date a couple times a week. Update Fall 2011: I've also learned about Handwriting with out tears, hearing aids, FM systems, and IEPs.

6. How to fight with my insurance company and occasionally win. Persistence is the key to success.
7. Children with Down syndrome tend to have the cutest hands and feet ever. How can you not fall in love with the short chubby little things
8. It isn't a good think to growl at everyone who tells you that those kids are so loving. This is one of the items that belongs on the list that Amy and I have made. This is just one of those statements that drives me insane. I would like to think that my children would and are both loving and happy because they live in a loving home. We might be crazy but we are loving :-)

9. Don't take things for granted.

10. Notice the little accomplishments in life. When Rex was tiny we just took it for granted that we would moved from milestone to milestone. I wish I would have paid more attention to the details.

11. Small inside jokes can take on a life of there own. I was so tired of people talking about Riley as "one of those" or "they" that I may have freaked out one evening over dinner when Justin and I had escaped on a date night and were out to dinner with Jeremy and Angie. Well, in a totally off color and yet hysterically funny way Jeremy points out to me that a family we happened passed had a child with Down syndrome, but it went more like "Hey Mary! they got one of them kids too!!!" and with that it started. We often joke with our other friends that have "one of them". I think I have everyone around me paranoid about making generalizations about Riley.

12. The bond between brothers is immediate and very strong. I have been amazed by Rex and the instant total and complete love he has for Riley. I have no doubt that he will always be his protector. I have been worried about how having a brother with Down syndrome will affect Rex... so far I don't think he realizes that all babies aren't just like Riley. If he does he certainly doesn't let on. Rex gets so excited when Riley learns something new, he has a huge sense of pride in teaching Riley. Since I was pregnant with Riley, Rex has had a list of items he will teach Riley. He is currently about to check off "teach Riley to walk" and then I think he is moving on to riding a bike. Both of these activities are entirely more exciting than teach him to sit on the sofa which was his first item on the list after I explained that Riley wouldn't be able to walk and ride his bike for quite a while after he came home from the hospital. Update Fall 2011: Rex is still his teach in all things. He is also a great speech therapist. Rex often makes Riley repeat things and really use his words to earn what ever he is after.
13. I used to think that I was pro choice and proud of it. I have always thought I though I could personally not terminate a pregnancy it was not my place to decide what other women did. Not too terribly long ago I had a couple of encounters with people that were facing a prenatal Down syndrome diagnosis and were leaning to termination. I now know that I am not pro choice. How could you possibly terminate Riley. It is personally offensive to think about.
14. I could adopt. One of my worst fears before I had children was that I wouldn't be able to conceive my own child and I would have to decide if I was able to adopt a child. I have two adopted sisters and it has not always been a bed of roses. When I hear the statistic that 90% of pregnancies with a prenatal diagnosis of Down syndrome are terminated I am sick. I know that I could take any one of those children and raise them as my own.

15. Sign language- I love the signing times videos and so do both my boys. Rex has picked up a ton of signs very quickly. He is much better at it than I am. I think it is so cool though that my family and friends are trying to learn Riley's signs too. Update Fall 2011: Riley has stopped signing for the most part and replaced it all with words. We occasionally get signs for more if he really wants to stress that he wants more food.

16. 80% of children with Down syndrome are born to women under the age of 35 Not could could it happen to me at 30 but it did and I'm by far not the youngest of my friends to have a child with Down syndrome. We have so much education to do still.

17. My house will never be clean. EVER I'm not known for my housekeeping skills but I attempt once in while but seriously they should make a carpet that goldfish crackers and cheerios blend in with better. Update Fall 2011: Yep its still not clean. Not so many goldfish these days. Riley has moved on to Gogurt and string cheese. We find string cheese butts everywhere.

18. My fear was a waste of energy. I was so afraid of having a child with Down syndrome. If only I new then what I know now. I wasted a lot of time crying and afraid of what our life would be like and what Riley's life would be. If only I new how wonderfully normal and crazy it would be all at the same time. I wish everyone that knew they were having a child with Down syndrome could meet a child like Riley. Then they would understand.

19. Journaling is a stress reliever for me. While I love Riley to pieces he has also brought some added stress to my life. It is a challenge to keep up with his therapy schedule and Rex's soccer schedule plus any other activities going on and not feel a bit like I'm running in circles. I'm so glad I have found something to help me process it all.

20. I'm a sap. Who knew I could be that excited to see a new born baby latch on to a pacifier. Woo hoo he could suck and that means he'll be able to eat. Or be moved to tears watching a child roll over for the first time. Not only have I been so excited for every new milestone but I see and appreciate them so much more when I see other children do them.

21. I would not trade my crazy life for anything! We have our moments but I wouldn't trade my three boys for anything. I have a wonderful husband that I love dearly, and two hysterically funny boys.

OK Now its your turn. Leave a comment. You know you want to.

I gotta get myself some Kekahunas!

2011-10-26T21:48:00.000-07:00

Sorry but your in for random thoughts by an exhausted Mary tonight.

My blogger friend Tiffany had her big day on her blog today. A site featured her blog and she is getting a ton of traffic. Stop by and see her... she made treats for us and even cleaned for her special bloggy party. :-) Elasta mom is her blog and its worth the click to check her out and leave her a comment telling her I sent you. If you blog much you know how fun it is to get comments and we need to make this a record comment day for her. We've joked that there are so many blogs that are so fake and annoying get huge traffic. It feels a little like going back to high school and the popularity contest. I promise Tiffany is as real as they come. Her daughter has Cru du Chat and Tiffany beautifully share the story of the daily grind with a nice optimistic spin.

I also stopped by to see my girl Carrie. I know her in real life and have loved reading her blog Inner Hippie. I'm stealing her words from her About me section on her blog.

My name is Carrie. I am a very busy mother of 4 all under the age of 9. My husband works for Burlington Northern and is out of town most of the time. I am trying to get more organized, create a little art and lose the last of the baby weight. I’m not a writer so don’t expect much but I can promise lots of craziness and laundry.

I have a goal of running my first 5K in November 2011. I have never ran a full mile. I am working with an athletic trainer so I can run without my Terminator leg braces (as I like to call them). I have asthma and ACL reconstruction on both knees. I have lost 60 lbs and still have 20 pounds to go. Everyday I am a step closer.

I promise you won't regret following her blog either. Her kick butt attitude amazes me on a regular basis. I whine about having no time and she is chasing 4 kiddos 9 and under, making it to the gym and is the most amazing cake baker ever. Someday when I grow up I'm going to have Kekahunas just like her. Seriously I love her last name. Such an endless amount of fun I have saying Kekahuna. Its the simple things in life really.

I don't follow too many blogs these days but these are two I truly enjoy. I make time for real people that have real stories. I hate the sugar coated my life is a storybook blogs and will pass them by to read real stories of real moms getting it done in a heart beat.

This morning I compliment Riley's teacher on her cute outfit. She was dressier than usual but super cute. She laughs and says "ah thanks. I was out of town this weekend and didn't get the laundry done" I so get that. I love these little reminders that most moms are in the same boat. We are all running around trying to get it all done and sometimes we make it and sometimes we stumble. Cell phones have been outlawed while driving. I am much more distracted thinking about my to do list as I drive to work. Talking on the phone is the much easier than balancing the checkbook, scheduling a drs apointment, writing the grocery list and scheduling the days activities.

So here's to all the real moms getting it done everyday. I love ya all!

Can you hear what I hear?

2011-10-25T22:08:00.000-07:00

I'm not sure exactly why I haven't tackled this little bit of news in Riley's world yet but I'll give it a shot tonight. I've had 24 days in October to share but I haven't. I guess it seems like a big issue. One that I should give a lot of profound thought to or have a great story to go with. It really is fairly simple. Riley is now wearing hearing aids.

I have gotten a ton of questions about Riley's hearing and if this was a new development or what exactly happened that at almost age 5 he is getting hearing aids. We have been amazingly blessed with Riley's health. He simply has not had a multitude of health concerns like so many of our friends. He tends to have really random issues that cause no real issue after they are dealt with. For example he was born with two fingers stuck together. They were surgically separated and that was the end of that issue.

This hearing issue is not new. We simply have a new Dr. that pushed the issue with and for us. Riley has been going to the ENT since birth almost. Children with Ds have really small anatomy and are know to have issue with the ears so screening starts immediately. He had tubes placed at 9 months and as we approach his 5th birthday in a month we are still on the original set of tubes. About a year ago Riley's ENT, whom we loved, retired. So we saw a few Dr's in the practise and settled on one that seemed OK. He is great with Riley and overall a very mellow man. Since it had been a while since Riley had a full hearing screen he ordered one and the results weren't great. We got the typical story about how small anatomy and tubes can cause these results. I didn't really think much of it and thinking back on it I think something was mentioned about how we'd monitor things. Honestly this Dr visit was always a no brainer that didn't require much thought. Things were good we would get the tubes checked and the gunk removed and be on our happy little way.

In June we had another hearing test and as the Dr was going over the results from the day he dropped the big "if the hearing tests don't change we may need to consider hearing aids" bomb in the middle of a very typical update. I think my jaw hit the ground because this thought simply had never ever ever crossed my mind. I know Riley can hear. So we chatted about the results and scheduled a recheck in a month. This Dr with this one decision to push screenings a little more has made a huge difference. He didn't accept Riley's huge language delay as simply being part of Down syndrome.

That month was a long one. I questioned everyone that I could draw on for a resource. I grilled our speech therapist and my friend Paula who has a child that has a cochlear implant and a hearing aid. We did our own tests on Riley and were convinced he could hear just fine. I googled and googled trying to find anything that talked about low frequency hearing loss. When were hearing aids really useful? To be completely honest my panic about hearing aids had very little to do with anything other than the price tag. I immediately called our insurance company to confirm my fear that we have zero coverage for hearing devices. Big surprise not many people do. It just isn't a typical coverage. So the month came and went and the next appointment arrived.

It was an off day for Riley to say the least. The month before he had been amazing during the screening. He played all the games, answered all the questions and the girls put the thingy mawidigts in his ears. As I was leaving I received several compliments from the staff on how amazing both of my boys were. Rex had come with us and was so patient as he waited for Riley to finish everything. It was a good day. Now picture the opposite and then multiply it by 1000 and that is how bad Riley was on the follow up screening. As we were rescheduling yet another followup he ran off from me and I had to chase him down the hall way. I actually had to follow him into an exam room where the Dr was left open. I was more than mortified to realize that there was a patient and their family in that exam room. Granted next time I bet they shut the door it was still not a good moment. Since these results were not reliable we had the conversation about how long to wait for reliable tests, if a was sedated ABR needed, or really what were the next steps. We settled on another screening in a few weeks.

I went back prepared for battle. Riley was going to behave and we were going to get this done. Plan B was that I was going to ask to see the hearing aid specialist and see what we could come up with. I didn't not want a sedated ABR if I could avoid it. No need to sedate if you can avoid it. Well that was a waste. Riley was a total rock star again and I had no need to prepare for battle. He was flirting with the audiologists, the nurses and even put on a good show for the Dr. He had to show the Dr how to solve the puzzle on my IPhone. The tests very deemed very reliable and so we had our results that showed a high moderate hearing loss in the left ear and a mild hearing loss in the right.

asked them to give us feedback as he progressed. We weren't so sure that this very expensive experiment would do anything at all but we were going to give it a try. So we did the molds and went back to get the hearing aids and learn how to take care of them and help Riley get used to them. We put them in that Friday morning and haven't looked back. Riley immediately had facial expressions that told us he could hear things he wasn't used to hearing. The follow morning while we were outside at a soccer game he hear a train in the distance. He got a funny look on his face and said Train? He knows the sound of a train but in the distance I don't think he had hear that distant sound before. Immediately people started telling us that they could tell a difference in the clarity of his speech. I was glad to hear other people notice it and make sure it wasn't just Justin and I hoping to hear something.

Experiment done. Hearing aids are staying. Riley has been amazing with them since that first day. He leaves them alone for the most part. He has discovered that if he jumps up and down really hard he can make them come off. That isn't common behavior thankfully. The aids came with little decals of ton of different designs. Riley choose the giraffes for his. If you ask him to show his giraffes to someone he turns his head to show his aids like he is a girl showing off the new diamonds hubby just bought her. It is pretty cute.

This morning he brought me the case that we keep them in and asked me to put them in. There is no reason he would do that unless they make a difference for him in his world. I feel bad that we didn't pursue this earlier but Justin and I are pushing this parental guilt to the side. We made the best decisions we could with the information we had.

I took pictures and a little video when we first got the hearing aids and had plans to post them but my photo card is giving me fits. I will update with video as I get it to work.

Name that Tune!

2011-10-24T22:36:00.000-07:00

Riley is a singing fool these days. We sing a lot of Old McDonald. When I rewatched it as I uploaded it I realized he was asking for Shoulders aka Head Shoulders Knees and Toes. I was a little slow on the uptake on figuring out that one.

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The Riley Show

2011-10-23T21:42:00.000-07:00

Riley can work a room like no one else I know. Today was a prime example of this. We were out at my parents house for a gathering and these are people I don't see very often so I know Riley doesn't know them. They were all from my parents church so it was a nice warm crowd but still a group that he doesn't see more than a few times a year when we go to church with my parents.

We arrived early to hang out with my parents for a bit before the crowd arrived so Riley was nice and settled by the time the party started. The first of the guests arrived and Riley runs to the kitchen and gives this women a huge hug. Then runs over to her husband and gives him a hug too. This patterns continues as more people arrive. At one point he heard someone say hi to a women so he yells HI CHRIS and gave her huge hug too. It was hysterical to watch the reaction of people. They are always a little surprised when Riley is so quick to give a hug but it brings a smile to every one's face.

Riley and Rex couldn't be more opposite in this area. Rex stayed in the kitchen away from the crowd most of the day. Less chance of an adult talking to him that way. He is much better these days about talking back when someone talks to him but its painful to watch. He is so shy around new people it hurts. I always wonder what he is thinking about Riley as he's running around hugging strangers and Rex is trying to be as inconspicuous as possible.

I feel Rex's pain. Working a room of people is not my comfort zone. I'd much rather slide into the background. I envy Riley and his ability to walk up to anyone and give them a big squeeze and totally make their day. Hugs and smiles do make things better!

Ella is still one of Riley favorite people to hug. Thankfully Kacey takes pictures so I can steal them.

Swim lessons Summer 2010

DS Connections Picnic Summer 2011

TOP Soccer Spring 2011

21 Things About Riley

2011-10-21T22:29:00.000-07:00

October 21, 2011 brings the yearly list of 21 things about Riley. You can find last years list here. 2009s list is here and my original list is here. Hard to believe this little blog has been around so long.

Riley is almost 5 now.
Riley's favorite food is is chicken. He wants dinner to be chicken every night. We call lots of things chicken... we'll teach him about pork and beef before he gets married.
Riley started wearing hearing aids 3 weeks ago. They have made a huge difference already.
Riley is pretty much potty trained and is dry through the night too. This process sent us to the urologist where we discovered his testicles hadn't totally descended.
Surgery to correct #4 will happen in January.
Riley has huge x ginormous tonsils. The ENT is watching them and the speech therapist has expressed concerns. I'm guessing the tonsils don't make it through 2012. I wonder if they will give me a discount for taking 2 kids in at the same time.
Riley loves his new daycare. He acts like he has been there for years. When he arrives in the morning he yells "morning Sara!" to his teacher and is off.
Tiny Tim the Turtle song is his current favorite but Riley loves to sing and all kinds of music.
He also loves to sing the ABC's, Twinkle Twinkle and a ton of more pop stuff like I'm Yours by Jason Mraz, songs by Pitbull and Katy Perry. He does his best singing in the car.
Riley is a HUGE Elmo fan. He loves all things Sesame Street but Elmo is the fav!
Riley loves books! One of his current favorites is Ten Little Ladybugs
Riley adores his big brother. Rex had still make him laugh faster than anyone else in the world.
Puzzles are Riley's favorite app on my IPhone. Its amazing to watch he moves the pieces around and drop them into place.
Angry Birds is another favorite app. He has a hard time shooting the little bird the right direction but he loves it!
Riley doesn't like to walk anywhere. Running is more his speed.
Riley is going to be Wood for Halloween. We borrowed a pair of cowboy boots from our friend and my mom is sewing a vest. He is going to rock this one.
Riley loves to cook. He helps me count the eggs and stir. He is very handsome in an apron.
Riley loves to play with his friends. I can bribe him to do almost anything with the promise of getting to play with his girl friends, or Braden. HMM now that I think about it I think I need to find him some little boys to play with.
Play dough is one of Riley's favorite things to play with. Typically he makes snakes!
Farm animals are always at the top of the list for playtime fun. He loves to build barns from his blocks to put his animals in.
Riley is amazing! He is learning so much at school and has been talking a blue streak. Its been fun to be able to relax a bit and just enjoy having a 4 year old in the house. Too soon he will be off to kindergarten.

The big move!

2011-10-20T22:14:00.000-07:00

Tonight we moved Rex into his own room. He decided almost 2 years ago that he wanted to share a room with Riley. It has worked great to have them sleeping in one room and have the toys in the other room. Late this summer he asked if he could have his own room again. We decided this was a good decision and so for Rex's birthday we promised him a new bedroom of his own. This simple project has turned into the longest small project ever. We painted, pulled the trim and repainted that and Justin refinished the hardwood floors. It has all turned out really well. Rex picked a silvery gray color for the walls and I painted the ceiling dark gray. We trimmed it in white and a light finish on the floors. All in all I think it looks great. My mom hooked us up with curtains. Rex decided he wanted Washington State University cougars for his curtains and Gramma gave him a great cougar blanket for his birthday. He is in heaven!

We aren't quite done but its close and tonight he moved his bed into his new room. He went to sleep a very happy boy tonight, but not before he hung a sign on the door marking his territory.

IEP time again

2011-10-19T21:34:00.000-07:00

I am not exactly sure why I've been struggling so much posting this year during 31 for 21. Riley typically gives me plenty of stories to share. This year we seem to be pushing the limits of what we can keep up with as a family. I think we all have those moments in life where we push a bit too hard and one of the dozens of balls that are up in the air fall. I feel like its better that the blog challenge is the one to drop instead of forgetting one of the kids at school or something exciting like that.

We had Riley's IEP meeting meeting last week. I love his teacher but it is always seems a bit overwhelming to have to digest all the goals and plans for the next year. This IEP will stretch over the beginning of kindergarten so it included what we are estimating his needs to be during that transition as well. We will revisit in the spring when we start the transition planning but still a bit unbelievable that he will be headed to kindergarten next fall. We have some big decisions to make about his placement in kindergarten. If he stays in the public school he appears to be headed to the integrated kindergarten at our neighborhood school. That room has 18 kids with 6 of them on IEP's. We are still highly considering sending him to the Catholic school that Rex attends in our neighborhood. Glad I don't have to decide today!

Riley's teacher is really stressing writing with him this year. She started to write one goal to state that he would be able to write all of the upper and lower case letters. Her supervisor made her rewrite it since that was a grade level. Apparently he can't have goals that would be considered at grade level. So the technical goal was rewritten to state that he would be able to write the letters of his first and last name in uppercase and lowercase letters. He will work on all letters and she will record progress on the letters in his name. Works for me! It kills me that our kids can't have goals that would be considered on grade level. If he can work on grade level he is at risk of losing his placement. It isn't as if he is suddenly going to not have Down syndrome. It is crazy that he could lose some of his services if he does too well. Why oh why should we wait for our children to fall behind before they can get the services they need.

Tiny Tim the Turtle

2011-10-16T21:58:00.000-07:00

Riley loves the turtle song.

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Sassy Saturday Upates

2011-10-15T18:02:00.000-07:00

I'm failing at the 31 for 21 challenge this year. I fell asleep waiting for my video to upload last night and missed my second day in the first 15. Not good averages. I still don't have time to update my video so the hearing aid post waits for yet another day. Today you get some really random updates... enjoy!

This week Riley had an check up with the urologist. He is doing well and while we have to continue to monitor but hope to be done with the medicine by February.

He also had a check up with the audiologist for his hearing aids and all is good there.

Rex won both his football game and soccer game today. He is loving playing on the line and pushing kids around. He also scored a goal at his soccer game.

Riley is talking more and more. He has been asking for his Ella. Last night he asked for "my Ella, Kacey, CHRIS, and Unter" So we are busy playing tonight. Hope you are too!

2011-10-13T18:43:00.000-07:00

Yesterday Riley had an ultrasound and recheck at the urologist office. This is my least favorite of the specialists offices so I went in with a bit of an attitude, I know who would have guessed that I'd have an attitude. I must have asked at least 4 different times about this appointment and if there were any special instructions since we were having an ultrasound. Oh no I was reassured over and over no need to drink anything special just make sure he's had enough that he can go to the bathroom. Simple enough...... Seriously why do I schedule appointments in the morning and why oh why did I ever believe someone that told me I didn't have any special instructions before and ultrasound.

We had a good morning and everyone had breakfast and then I chased Riley around with his large glass of milk that I was trying to get him to drink. Just drink enough so you can go potty at the Dr office. Once I gave him a straw we were in business. He made Rex hold his glass for a period but other than that it was SUCCESS! So we climbed in the car dropped Rex off at school and away we went. As we checked in with the usual no nothing has changed still the same insurance routine I asked again. Does he need to drink more? Oh no he's good... the nurse will be right out. First thing out of the person's mouth that would be doing the ultrasound......has he had lots to drink? Well he had a large glass of milk but that's it. Well we'll have to measure and see if that was enough. So after taking away his toys and stripping him down and smearing goo all over his tummy she announces that his bladder isn't at capacity so he'll need to drink more. She hands me a glass of water... sighs when I ask for a straw... and then announces she'll be back in 15 minutes. Great! Just how Riley and I wanted to spend our morning. Crammed in a small room with him half naked and me shoving a straw in his face demanding he drink water so we could get out of this place. 45 minutes and two measurements by ultrasound later it was determined that he was at capacity and he need to go on the potty. Well apparently this pediatric office has magical patients that must all be highly skilled at their potty techniques because the nurse was surprised when I told her that no he doesn't stand up to potty. He had been naked from the waste down for the better part of an hour. Seriously how exactly did you think he aimed that? I can't imagine this is the first little boy she has seen with Down syndrome. They aren't know for having big of anything. She was less than impressed when I told her that we shopped for months for the froggy potty and its winning feature is the world largest pee guard. When he sits on big potties he has to hold on with both hands which means I get the job of taking a huge wad of toilet paper and "catching" it. This meant that she had to aim for Riley.. I don't think she thought it was a fun job. I laughed and figured it was payback for making me sit in the room for so long. I wish I could tell you for the sake of this story that he pee'd all over her but in reality it was just a little bit on her.

The PA was much more organized and thorough today so that was nice. The medicine that Riley is taking is to actually increase the capacity of his bladder and it is a smooth muscle relaxer that helps stop his bladder from contracting on its own. It has been such a huge success with Riley! They have to monitor with the ultrasound pre and post void to make sure there is no residual urine. That is a common side effect of the medicine and can be an issue. Riley has a tiny bit but I think it had more to do with his being on a potty that was too big with a strange nurse aiming for him. The PA agreed and so we are back in 2 months for another check. We should be off the medicine all together by February.

The beloved froggy potty!

OOH YUMMY!

2011-10-11T21:05:00.000-07:00

Riley loves to cook! He always wants to know what I'm doing in the kitchen and loves it when we pull up a chair so he can help. We counted eggs and poured the water and oil in. He did a great job stirring and was quick to boss me around when it was my turn. He wanted me to stir fast and get it all mixed up.

Stir Stir Stir

Mommy's helper

The best part...

Yummy brownies for a treat!!!

Are you ready for some football???

2011-10-10T21:59:00.000-07:00

No words are really neccesary to tell this story. Rex is in heaven! Huge thank you to Amy for taking some great pictures!!!

YES COACH!!!

Love the concentration

Bring it!

Out of my way

The dive and snag

Success!

Pure Joy!

Financial Peace

2011-10-09T21:18:00.000-07:00

We were by not stretch a set of financial wizards before Riley was born but I have to say he adds some financial stress to our world. We hang out in this middle ground where we have pretty good jobs with pretty good health insurance that we stress to the maximum. We don't qualify for any assistance and in WA there doesn't seem to be anyone in recent history that has qualified with the medicaid waiver only those with older children that hang on to that jewel. Don't get many wrong we have many blessings in our lives including a house and enough square meals to make us all round. We do fine but we could certainly do better.

As a means to that end Justin and I have started taking a class through our church called Financial peace by Dave Ramsey. http://www.daveramsey.com/ is where you can check him out. We are headed to our third class tonight and it is all about cash flow planning. Should be fun! They also cover some great ways to help teach our children about the value of work and money as well. I'm not a huge fans of a Sunday evening class but I'm glad we have committed to do this together. We are certainly moving in the right direction together.

Knowing that someday Riley won't have us here to take care of him means its even more important that we get all of this taken care of now so we can leave him in the best shape financially possible.

So for those of you who are familiar with this program/process we are working on Baby Step #1. Wish us luck.

2011-10-07T18:10:00.000-07:00

The boys had a completely fun summer with our sitter Kristie. Today we are missing our Kristie! She left for School about a month ago and the boys have done really really well with the transition to a typical daycare instead of having someone come to the house. Randomly Riley started asking for Kristie this week and even more randomly Kristie sent me a message to let me know she'll be in town this weekend and wants to stop by. Those two have a connection!

The boys were busy swimming, playing, picnicking and all around having a ton of fun all summer. We wanted to make sure they had some activities so at the beginning of the summer we purchased season passes to Riverfront Park. It is a park in downtown Spokane that has mini golf, a handful of rides and an IMAX theatre. The first movie they saw was about Dinosaurs. When I asked Riley about his day he simply said DINO ROAR!!! Apparently the movie was a little loud.

When I was going through me email I found this little video that Kristie had taken during a golf outing. Just tilt your head a bit... I don't now how to fix it.

Big Brother's views on the Hurricane

2011-10-06T20:53:00.000-07:00

We were chatting with Rex about his little brother tonight at dinner and it mad me think it would be fun to share his view of having a brother with Down syndrome. The answers to the questions below are straight from Rex.

What is the best thing about having Riley for a brother? I get to wrestle with him a lot!
What is the worst thing about having Riley for a brother? He yells a lot.
What is your favorite thing to do with Riley? Play outside.
What is your least favorite thing to do with Riley? When he tackles me.
How do you feel about Riley having Down syndrome? I think its fine. It really doesn't make a difference.
Anything else you want to tell me about Riley? Hmm he loves to have fun.

Have I mentioned that Rex is a man of few words? This kid cracks me up. With Rex you have to take the conversation when you can get it enjoy it in the moment cause it won't last long. I think he sums Riley up when he said he loves to have fun!

Laughter is the best medicine!

2011-10-06T11:31:00.000-07:00

We laugh a lot around our house and typically the boys are the source of this laughter. We have found that laughter makes our world so much better. I hope this video brings some laughter into your world.

I'm a little bitter that my coputer wouldn't let me upload this yesterday. I missed day 5 of the 31 for 21 challenge.

Make a video - it's fun, easy and free!
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How did that happen?

2011-10-04T22:19:00.000-07:00

Some time during the night when I wasn't looking my little Rex became a 3rd grader. He is doing well this school year. Not that I expected anything else but its always nice to see that first progress report come home with great remarks about how well he is doing. He is reading up a storm in between soccer, football and regular homework. Thank goodness he caught the reading but because I don't think I have the energy to wage that battle every night. He has most of his best buddies in his class so he is in heaven!

1st day of third grade- ~ Aug 31, 2011

Big brothers first day of school

It was a great surprise to find one of Rex's best buddies at his table

Possibly the cutest teacher ever... I think the school has a plan to help keep little boys interested in school

Riley started preschool two weeks after Rex started. It was a nice way to transition into the school year. We've had to make changes in childcare as well so Riley started a new daycare and preschool on the same day. I was worried about all the changes being too much but he handled them like a champ. I on the other hand was a mess but that's an entirely different story.

1st day of Riley's last year of preschool ~ fall 2011

A little help from big brother!

Working hard at daycare

The girls at daycare posed him for 1st day of preschool pictures

Riley is having a great start to the school year. He is making new friends and impressing his teachers. Since we've all but checked potty training off the list I think he will be all set for kindergarten next fall. The real question will be if I'm ready for kindergarten in the fall.

Potty Potty Potty

2011-10-03T21:01:00.000-07:00

We have been working on this for what seems like an eternity. Almost two years to be specific. On January 6, 2010 I posted about the first box of pull ups we bought. We weren't really thinking about potty training at that point but he showed interest so we went with it. As the year progressed he made progress and was going often at school when they took him but not ever telling anyone if he needed to go. Fast forward to our end of the year conference at school this last June and the discussion of potty training came up. Riley was making no progress from where he had been the previous spring. That alone didn't raise any red flags but the fact that we would take him at home and then just a few minutes later he would have a little accident. Never river down the leg but noticeably wet. This "dribbling" did raise a red flag with the group around the table. That combined with how much progress he had made in all other areas brought everyone to the suggestion that it was time to bring the pediatrician into the discussion.

So off to the Dr we went for a ear infection I'm guessing, but I made sure to throw in the questions about potty training. We chatted about what was going on and his pattern of going and then dribbling not long after. Our Dr wanted us to go see the one and only pediatric urologist in town. Everyone had told me that if this was what we needed to do it would take months and months to get in. I was prepared for a 6-9 month wait but figured we'd better get it on the books since potty training was one of the last obstacles standing in the way of Riley going to a typical kindergarten. So I called made the appointment and was surprised that we could see the PA in just a few weeks. We had to schedule an ultrasound pre and post void and then would see the PA when we returned from vacation in mid July.

I'll catch you up on our fabulous trip through Montana another day but upon our return we made it in to see the PA at the Urologist office. We had just been to the ENT for a check up so as we get out Riley says "no ears NO ears!" I assured him it wasn't his ears that this Dr was interested in. It was a fairly routine appointment with a slug of questions about our potty habits. Things were going along smoothly until it was time for the actually exam. She checks him out as she causally looks over to me and says "has your pediatrician ever mentioned that his testicles haven't descended?" We as a matter of fact have had the conversation and he assured me that they had. I distinctly remember the part where he said "once they come down the don't go back up". It has taken a lot of phone calls and conversations with nurses and Dr's and I can tell you the short version is that its a temperature issue. If the testicles are up more than they are down (apparently his float a bit) the temperature is not what it would be if they were down where they were supposed to be. This rise in temperature not only causes issue in sperm production, which lets face it I don't care about, but also can cause malignant tumors. Enough said... surgery scheduled. I give the long version another day but for now back to the potty.

The whole testicle issue has nothing to do with potty training ( I know I was disappointed too) so we left the Dr's office with some "exercises" and a pinwheel. The things I've learned from Riley... If you bend over and touch the floor and take some nice deep breaths the floor of the bladder relaxes and allows you to finish emptying. The pinwheel was to encourage the deep breaths. It can be a little awkward but Riley now will bend over and take his deep breaths with no cue from us. After a month of the exercises a lone we added a medicine that helps the bladder from having little spasms and contracting on its own. This medicine is the miracle potty potion in my mind. We wouldn't want to leave things as simple as just a medicine so the Urologist wanted us to do a full clean out to ensure that constipation issues weren't adding to the issues. I didn't realize how closely 1 & 2 were connected. Wow did I underestimate how constipated Riley was. We've now added in a daily dose of miralax to keep things moving. I'm hoping to transition to just adding fiber to his diet but for now we are dealing with the miralax and I was quite excited to discover Kirkland makes a version now! If ever a family needed it in bulk its mine. I swear my life won't revolve around poop forever.

Riley has made amazing progress in a very short amount of time. He started on the magic potion toward the end of August and started school in big boy undies on September 12. He averaged an accident a day the first couple of weeks but the last two weeks he has arrived home in the same pair of clothes and underwear that we sent him in. Most days he wakes up dry and I've been brave enough to let him nap in undies and he typically is dry.

We go back to the urologist office next week for a ultrasound and a check in. Not truly sure why I'm going to pay for another office visit or what the ultra sound is looking for but I believe it all has to do with the magical potty potion. I'll keep you posted on that. For now we celebrate and enjoy not buying pull ups!

2011-10-02T17:28:00.000-07:00

I figured we better back this train up to a few months to catch up on all the fun activities that have kept us so busy. Most of our time seems to be spent running Rex to and from some practise or game. Baseball is one of his all time favorites. Riley loves to go to his big brothers games. Typically not because he is an avid sports fan but more because his friends have really cute little sisters. It is amazing what we can get him to do if he gets to go play with his friends. Rex played his first year of kid pitch baseball and boy did that give Riley a lot of play time with his buddies.

Our friends Mike and Karen from Billings came to visit during baseball season and Mike just happens to be an amazing photographer. We have some really cool pictures as result. Who knew the promise of pizza and beer after would so easily talk Mike and Karen into watching a really long cold baseball game. You can check out Mike's amazing work here. He not only photographs people but landscapes and you won't want to miss them I promise.

Rex's pitching debut

Rex's home run stance...

As always Riley was having fun. There was a sandbox at this field that all the little siblings loved. I tried to pretend that Riley wasn't really eating the sand but you can see the grains of sand in his mouth in this photo. YUCK!

Its a good thing Riley is such a good sport about sitting through all of Rex's activities. He has managed to find good buddies in the little sisters and brothers on each team. Rex's friend Colin's little sisters are among his favorites. He has had a bumpy relationship with the youngest Eva. Riley hasn't been able to say Eva clearly so it always comes out Eba. Come to find out that Eva didn't like being called Eba and didn't understand that Riley wasn't saying it wrong on purpose. Now that Riley is saying Eva they have a bit smoother time of things. I think at the last football game they were both feeling a bit feisty because they sure weren't going to smile for the camera. I think this picture is hysterical!

Here we go....

2011-10-01T19:52:00.000-07:00

October has snuck up on me way to quickly but its here and as we all know that means it is Down syndrome awareness month. Could there be a better reason than celebrating Riley to get to blogging again??? I didn't think either. I will be posting each of the 31 days of October in honor of Riley and all of his friends that share a lil something extra.

Riley has been growing by leaps and bounds and there is lot to share that is going on in his world. The rest of the family has been busy too so we'll spend October getting to know each other again. Life is crazy as usual so I'm going to need lots of support from all my faithful commenters to help me make it through posting each day of October. For those of you that don't blog please still leave a comment and let me know you've stopped by. Just choose anonymous and don't forget to leave your name so I'll know you stopped by.

Stay tuned for adventures of the world of Hurricane Riley. There are lots of adventures to share... potty training and hearing aids to name a few. See you tomorrow!

1st day of preschool 2011