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!