Do they really think this?

A conversation I had with a cashier at Wal-mart yesterday keeps popping into my head. It was one of those conversations that, right after it has happened, I immediately call Derek and we ask eachother "seriously? she really said that?"

The cashier noticed that Gage was on oxygen and went on to tell me about her daughter that had been on oxygen when she was young as well. She told me she took the fact that her daughter had heart problems terribly and cried and was miserable for a long time. She asked me how I had taken the whole thing and I said with a smile, "we have actually taken it really well! We have so much support behind us, and I was able to learn from many wonderful moms that had been in my shoes before." As we continued talking, it led to the fact that Gage has Down syndrome and that he pretty much had a 50/50 chance at having heart issues, so since I have met so many moms with kids with Ds, I was bound to find great moms that had been in the exact situation. At that time, she gave Gage and I a look that I saw as a look of pity. Then came the words I was stunned by...

"Well, I guess that if you were able to accept the Down syndrome then the heart things were probably a cake-walk then."

SERIOUSLY!? I wanted to yell and tell her she was stupid and I can't believe she would ever think that, let alone say that out loud -- especially to a mom with her adorable baby right there who just happens to have Down syndrome... I mean come on! But instead I decided to take the opportunity to tell her how I really felt, and I hope that I was able to make an impression on her and the nice man standing behind us in line.

"Actually, it is the exact opposite. I have no problem accepting the fact that he has Down syndrome. The heart issues have been the hardest thing ever, because I know they risk his life."

I was so sad that she really felt this way, that she viewed Down syndrome in such a negative way, but felt blessed that I was given an opportunity to express how I felt and hopefully make her think a little. Maybe, just maybe, I was able to change her way of thinking.

My latest project

This is the table and bench that I (with major help from my wonderfully talented dad) made! My dad did all the hard stuff... then I did the rest!

The table is made out of just a cardboard box I had lying around my house. I just did a few cuts with some scissors, and put packaging tape around the edges so it won't cut Gage's little legs.

Then the bench is made out of pieces of 4x4s. That is where Papa Jo came in! He took it and cut it for me, then sanded them down so they are really nice and smooth. Then he screwed/glued them together real good! Thanks so much for helping me dad, you are the best!! It made it so much nicer than if I had done it on my own!
I painted them, then got some cute little wooden pictures from Roberts, and glued those on. I ended up covering the entire thing with modge-podge after, just to give it a little more durability.

I think Gage really likes playing on it, he is really entertained the entire time! I was also so proud of him because I would set those rings down by his feet, then he would bend all the way down, pick them up, and sit back up on his own! I was super excited!
The reason I ended up making these was because of things we are working on with physical therapy. He likes to straighten his legs out to find strength, instead of using his muscles when his legs are bent, so we have some exercises we do to work on that. I try to use my leg but having a bench makes it much easier so I can look at Gage and play with him at the same time we are doing the exercises.. that way he thinks it is playtime instead!

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And one more thing... Gage is 9 months now! I can't believe how time is flying by, I am loving every moment of it. I love you big boy!!

This sums it up...

Well... the picture pretty much says it all! We have had one tiring, long week. Eye appointment, sleep doctor, cardiologist, synagis shot, flu shot, and physical therapy all mixed into a week with all the normal things that get crammed into a week! And yes... that is oxygen you see hooked up to Gage's sweet little face. And yes... that is a picture during the day. I am guessing our cardiologist didn't get the memo that we were hoping to get rid of it all together. Apparently, he got the one that was all mixed up asking if we could be back to oxygen all day instead of just at night... NOT what we were going for! Turns out that Gage still has high Pulmonary Hypertension... for all those not so used to the "heart talk", that means that the pressures in his heart are too high, and the cure is usually more oxygen. When we left the hospital from Gage's surgery, his pressure was at 46. Friday, it was at 41. Not the drop we were looking for. The doctor did say, though, that if the pressures were around 20 he would be grinning from ear to ear because Gage's heart looks amazing and is very strong. So I have to look at the bright side really... because that is the more serious part of it all. We are really hoping that the oxygen knocks his pressures down, because although people can usually live a normal life with pulmonary hypertension, it does shorten the life-span, but only by a small amount usually.

Our sleep doctor decided that we are for sure going in for a sleep study to check if Gage has sleep apnea. I am kinda thinking he does... just because sleep apnea can often lead to pulmonary hypertension... so I kinda see a trend going, ya know what I mean? He said that Gage has large tonsils, which is unusal at this age... normally they are very small until they are 2 or 3. So really, I see this as a blessing because that will be our first step if Gage does end up with sleep apnea. Getting tonsils removed is such a routine thing and easy to have done. We will see an ENT doctor, and get that checked out and probably get those removed... then have another sleep study 3 months later and see if that was what was causing it. I feel like that will make a huge difference since it will really open up his air-ways and probably get rid of any apnea and hypertension problems.

Our pediatrician wasn't not so thrilled when we went in the other day for Gage to get some shots! He came walking in and had the most surprised look to see oxygen on Gage again! I really like our pediatrician, he is so personable and shows that he has a special place for Gage and always makes a special effort to see him when we come in, even when we are just there for shots.

So yeah... off of my blabble about that whole ordeal we had going on... I forgot to post these cute pictures of Gage at the park. A few weeks ago the weather was sooo nice and Gage absolutely LOVES to be outside... even if the weather isn't so nice! So I decided to take him on a walk to the park. It was so cute, the whole time walking there it was like he knew we were going somewhere to play cuz he kept looking back at me with the most excited face ever... too cute!!

Gage thought the swings where hilarious!! He kept laughing every time I would push him. He was way too small for the swing... but he still just loved it!

By the time we got home, Gage was out. Totally worn out from his day at the park! I just can't wait until the new snow melts and the weather warms up for good, because there will be many more days at the park for us! So exciting!!

1 down, 2 to go!

Well, this morning I took Gage to the ENT doctor to get his hearing checked. I got a letter saying I needed to get it checked again because he hasn't ever totally passed the hearing test. I haven't been too concerned because I know for a fact he can hear us talking to him and recognizes his own name and everything, but I decided I better do as I was told :) So we headed to the doctor's office this morning. It was a VERY short appointment and pretty much just confirmed what we have been told the 3 times before... right ear is perfect, left ear just BARELY misses passing. So we are thinkin' it could just be fluid or "junk" hiding in there and will go back in 6 months for another appointment. Derek has a small hearing loss in one ear as well, so it could possibly be something he just caught in his genes. We will see!
We also will be heading to Primary Childrens' for an appointment with the sleep doctor tomorrow morning. I wasn't exactly sure why Gage is still on oxygen at night and why it was necessary to meet with the sleep doctor so I e-mailed our caridologist the other day to ask him. He said that we want to rule out any possibility of sleep apnea since it could lead to pulminary hypertension... so keep your fingers crossed for us that everything goes well! We also meet with the cardiologist tomorrow afternoon for a checkup on Gage's heart surgery. I feel like everything is going wonderfully, so I really hope that this confirms how I feel about it!! So it is just another one of those busy times with lots of appointments to be to! Luckily, Gage is so laid back that he doesn't mind a bit and just sits and stares at the doctors with a big grin... that makes it a lot easier!

I got to spend last weekend up in the mountains at my grandparents' cabin with my mom, cousin, and aunts scrapbooking! It was such a blast and I was so excited to get a lot done in Gage's book, I hadn't even started before this weekend! Pretty bad, huh! My dad was so sweet and kept Gage for me. Last time we went up I didn't get a thing done cuz I had Gage with me and felt guilty just making him lay around while I scrapbooked! So it was sooo nice to know he was in such good hands so I could just get lost in the scrapbooking world for a few days! :) It was pretty funny becase this last weekend Derek also found out how Gage likes to take matters into his own hands if you leave food sitting on his high chair! I thought he might learn from my experience... but I guess maybe he wanted to see it for himself ?! haha He got some more pictures so once I can get them up on the computer I will have to post those as well! I guess I better get to packing... wish us luck!

Picture Overload!

BIG NEWS!! Gage learned to self-feed today! And he learned it ALL on his own! I got some great pictures for proof! :) Not even a drop on the floor!

I know it was a while back, but here is Gage opening his Valentine present from Gramma Jill and Papa Joe!

"Check out my cool new book, Mom!"

Gage is reading his card from Lola and Lola!

My handsome boys all dressed up

Gage's first basketball game! He had so much fun checking out all the crazy new stuff going on, it was so cute!

I just love this boy, he is so stinkin' cute! And 8 months old... a while back! Yes, I know it has been forever since I posted, school has been INSANE! But soon will be over, yay!

Baby you amaze me

Two months ago...
...
...
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...and now!

I just still can't believe that it was just 2 months ago that Gage went through so much at such a young age. I know that so many can relate to how bad I felt about my little guy going through such an intense surgery, but I can't believe what it has done for him. He has been able to discover a whole new energy and we are loving it! Although, I am still trying to convince him that even though he has a healed heart, he still needs to sleep... :)
I am so excited to see what the future holds for Gage and the many lives he will impact. I hope Cathy and Laurie don't mind me copying the links they each had on their blog... Today they both posted links to this clip from the Today Show. I watched it and cried because it made me feel so good and SUPER excited about our future. Not only has he effected us as a small family, but I know that he is going to effect more people than I can even imagine. Thank you so much to everyone who has been a part of this great journey we have experienced so far. We love you all!!

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And I also wanted to wish Derek's older sister, Jess, a Happy Birthday!! I know, its after midnight so (I probably should be in bed) and this post will probably say it isn't on your birthday, but this is the earliest I could get to the computer to do a post! We love you and hope your day was wonderful. I'm sad you are so far away so we couldn't go out to dinner or something to celebrate!

My boys

I am the luckiest girl in the world. Look at these sweet boys of mine! I am so lucky to have them in my life, they make every day so wonderful and I love them so much!


Last week, I woke up feeling sick one morning. I tried to tough it out but ended up calling Derek for help. He missed his classes and came home to take Gage to his mom's house for the afternoon so Gage wouldn't be around me too much. Derek's little sister took the top picture of them taking a nap together that day, and the cat decided she wanted to be the top of the pyramid! And we took the bottom picture of Gage today. It was so cute, he was petting the kitty with his left hand (ok, really pulling on her hair)!

Gage had fun watching himself on the computer camera! He kept smiling big at himself so I would push the button to take the picture then it would start counting to 3... like I can get him to smile ON DEMAND for 3 seconds! Haha but he still was being so cute with it!

Well, this little guy turned 7 months last week, it is just crazy how time is flying! On his "7 month birthday" Tori, his physical therapist came over. Not the best therapy session to be honest... it was scheduled at 10, she was running a little late so she got there at about 10:15 which was fine, except for the fact that Gage was ready for his nap by 10:45! So... not long after that I just held him so he could sleep and she just explained what else we need to work on. Better luck next time, right?! Tori was really excited about the progress he has made since his surgery. She hasn't seen him sit on his own until then, so she was super excited about that. And we got a good laugh at his stubornness towards rolling over. It has to TOTALLY be on his terms... like... when he is laying on the couch, then decides to roll over... then he isn't on the couch anymore! Yes... terrible mom. But I'm happy to say that he did forgive me. :) So he finally decided to roll for her and she got excited and said "he's going to do it!" so he turned around really fast to see what she was excited about it! So she didn't get to see it. BUT I must admit, Derek and I are actually really happy that he doesn't roll all the time cuz that would just scare us at night. He still gets oxygen at night and I wouldn't be able to sleep because I would be afraid that the cord would be wrapped around his neck! K... I just read what I have typed so far and I am sorry that it is ALL OVER THE PLACE! One story to another! That's what I get for not posting for a while.

Then the next day, Kathy, Gage's nurse, came over. Really, I just always call her the nurse but she deals with nutrition, oral development, etc. And Laurie, I thought she was going to start Speech Therapy but aparently she has been doing it all along... With our EI program they won't actually send a ST until 18 months. She just works on tons of oral exercises for us to do, and works with feeding and those things. So sorry I am not much help on that one! But if you don't have someone doing that... I have really enjoyed her help, so it might be something you want to look into.

Now pause the music down at the very bottom of the blog so that you can hear this movie!! That is the best part!

So I've got another movie for you! Derek and I LOVE watching this. Gage does this new thing where he "Talks to the hand". I was getting Gage's bath water going, then I came back in to undress him and heard him doing it so I had to take advantage of the opportunity and get it recorded! I was quite surprised that he didn't get all camera shy! Then I just kept recording cuz he was being so cute!

Also, I just wanted to answer this question cuz I have been asked a couple times! Derek and I are both graduating in Accounting this semester... super exciting!! And Derek is also doing the masters program right now... I figured a bachelors degree is good enough for me! We only need one CPA in the family, right?! :)
AND GUESS WHAT!! Derek was looking on SUU's website and it said who will be the guest speaker at our commencement ceremony. Guess who it is going to be!! President Thomas S. Monson. I kid you not! I know this might sound dumb, but when he told me that I realized how happy I am that I decided to just tough it up and finish this semester instead of waiting one more. I think that will be one of the most fun memories for us as a family, and to have Gage there cheering us on, wow, I just got tears in my eyes thinking about that. I feel so lucky.

I love this!

Ok... Watch the movie and decide which one of them Gage likes best! I kept telling Derek that Gage does this but he wouldn't ever do it when he watched. Today, I put him in there and was ready with the camera. I just love it, it is always the yellow one and he just smiles soooo big, I don't know what it is!

Nothing too exciting has been going on around our house. Derek and I started school last Monday, so I have just been playing with Gage, going to classes, and trying to sneak in cleaning the house and doing homework during naps! I already can't wait for the semester to end... pathetic, I know.

Tori, Gage's physical therapist, comes over tomorrow. It has been 2 months since she has been over because of Gage's surgery and everything. I'm excited to get back into it again! And then we are starting speech therapy on Thursday... exciting!

Catch-up! Here we go...

Well, I guess it is time for me to play catch-up since I haven't posted for weeks! Not that I haven't wanted to... the holidays just sure have been busy! It has been awesome to spend so much time with family, but it makes for little down-time! Gage had lots of fun firsts these past few weeks, so Good Job Gage! We're proud of you! (I'll tell about them as I go...) So here are some fun Christmas pictures! I have so many but I tried to limit myself!

Christmas Eve, we went to Holly and Brent's house for our annual family party. Gage zonked out right when we got there, but once we decided to lay him down to eat, he decided he wanted to be a part of the party, too! Once he warmed up to everyone, he started showing off like he likes to. His first big accomplishment was his "first word"! Gage says MaMa! He started doing it just a couple days before Christmas. Derek says it doesn't count because he is just talking and doesn't know what MaMa means... but I am totally claiming the first word! :) He knows everyone thinks it is so cute, so he kept doing it for everyone at the party!

After the party, we all got to open our PJ's and then headed to bed!

Kody and Cherri got this cute puppy for Christmas, isn't he a doll!! His name is Teddy. I told Derek that as much as I would love to have a puppy, after seeing all the work he was, I think I'm okay without one!

Gage and Papa Jo. Gage got the fun rattle in his stocking! He loves it cuz it is really noisy!

Gage and Gramma Jill on Christmas morning

I think Gage really enjoyed just handing out with Grandpa and watching all of us open presents all morning! He seemed pretty content!

Oh, cool toy! Gage couldn't quite figure out the whole... open presents and there is a toy inside concept! But he sure got spoiled and had a great morning!

After spending the morning with my family, we headed back up to spend the afternoon with Derek's family. We opened presents and then went to Aunt Lora's house to visit a while. We were getting kind of nervous because the weather was getting bad and we were driving back to my parents house that night, but we decided to still stay and have dinner at Derek's mom's house. We thought about just staying the night and then driving back the next day, but since we left Gage's oxygen at my parents, that ended up not being an option since he has to have it every night! So we braved the storm and drove 40-55 mph all the way down! It was super scary, so I just sat in the back seat so I didn't have to pay attention to it and Derek could concentrate on driving! Gage and I sat in the back seat playing and... second fun accomplishment... Gage learned how to give hi-5! It is sooo cute, he kinda gives you this look and then lifts his hand up (or both, depending on the mood he's in!) and puts them on the palm of your hand and gets so proud! I just love it! And it was great entertainment to keep my mind off of the scary weather we were driving in!

The rest of the weekend we spent just hanging out and playing games and things. It was a ton of fun. Sunday we headed home so Derek could get back to work.

Tuesday morning, Gage had his 6 month appointment. He weighed 15 pounds 7 ounces, which I thought was great since he had gained 10 ounces in less than 2 weeks! But the doctor said he has dropped to a lot lower percentile then he usually is in so we need to try to keep his weight gain up. He is getting long though! He is 26 1/4 inches! The doctor was really impressed with him and all that he is doing. Every time we go for a well check, the doctor plays with him and then says, "yeah, his tone isn't low at all". So that is exciting! I have been wondering about the fact that he still doesn't want to roll from his back to his tummy but the doctor said that at this age, even for a typically developing child, it isn't a concern that he isn't rolling. So I was happy to hear that. Gage had to have blood drawn so they could check his thyroids. With Down syndrome, they tend to have a higher chance of problems there, so we have to check at 6 months, 1 year, and then every year after that. I was really excited cuz he only got pricked 2 times instead of the usual 5 or so!! He hated it though, I felt so bad! But the happy news is that the doctor called me and told me everything came back perfect, so I was thrilled to hear that!

On Wednesday, Derek decided we would go to Matt and Shari's for New Years. We had so much fun playing games and hanging out and talking with them! The have an adorable little boy named Justin. He is 2 months older than Gage and he is just so much fun! Every time I see him I can't believe how fast he is growing up!

I'll have to try to get pictures of Gage's last accomplishment because it is hilarious to watch! Gage will tripod sit by himself, but if I sit him up without his hands down, he rests his back against me a little for support. The other day, I wanted to see what he would do if I wasn't there to rest on, so I leaned back whenever he leaned back and he just kept using his tummy muscles and holding himself up trying to slowly lower himself until he leaned up against me. It might be hard to imagine, but it is so funny! It looks like he is doing Pilates when he does it! So hopefully he will learn to just use those tummy muscles to sit up instead of using them to try to find me to lean against!

Well... holy cow. I will be done and try not to play catch-up again! We hope your Christmas was wonderful and that you have a Happy New Year!!

Bring it on, 2009!!!