Radiothon

My Uncle went online (www.wiky.com) and found that at the website, you can click on "listen now" and get a live feed from anywhere. So out-of-towners with a reasonably quick internet can listen. So Mike - no poking fun while we are interviewing. I'll know. Say hi to Aaron. By the way, my brother knows Aaron Tippin (He's a country singer, Margaret) now. He wants me to think that is better than touching the Superbowl trophy, but I know better. Actually it is a neat story. My brother, Mike, is the band officer for the New Orleans Marine Forces Reserve band - it's a reserve unit, but all of the Marines in the band are activity duty. He had his jazz combo playing at the WWII memorial for the Disabled Veterans and Aaron Tippin was there too. "Somehow" my brother "found" himself next to Mr. Tippin (sounds like stalking doesn't it). Anyway, they talked and Aaron Tippin asked Mike who he could talk to about getting involved with Toys for Tots and Mike gave him his card.

Continuing to gain!

Weight check this morning and you won't believe how much he has gained (at least I couldn't). Last week he was 12-1, this week he weighed-in at 12-15. That is almost a whole pound in one week! He has a double chin and I think he is working on a third! When we got to the pediatrician's office, there was another family from Riley there. Colin was in module 1 or 2. He was transferred from the Deaconess NICU for heart problems, got a pacemaker and after some other complications, went back to Deaconess. It was nice to see him doing so well. He isn't on oxygen and takes most of his feedings orally, but has to supplement with the tube sometimes.

Anyway, back to Gabe. He is sleeping so well, I kind of hope we may get drop a nighttime feeding or at least stop fortifying the breast milk (if I haven't explained that before, it just means we add formula to the breast milk so it is higher calorie). OK, if there are any Riley nurses still checking on us, what do you think? Will we get to change anything with such impressive weight gain? We see Dr. Rouse on Friday here in Evansville and Developmental Peds when we are at Riley on August 27th. I am not sure who is making the feeding decisions. The surgeons called pretty much all the shots when we were at Riley, but I know there are dieticians with Dev Peds who might advise us. I guess we'll find out. Tomorrow is the telethon's first day and we are going on the air around 10:20ish. Wish us luck. Hopefully we don't fumble through it.

More pictures

There are more great pictures below! I even found a picture of Dave Knopsnyder from Summer of 2006, playing guitar out at Lincoln State Park.

I made it to mass yesterday - first time since I have been home. The boys were enjoying their last day of summer vacation, so I went by myself (that way, I also get to actually hear the homily). I'm really glad I did get to pay attention (ofcourse I always try to pay attention, but between two wriggling, impatient boys it isn't always easy). One big point Father made was the importance of having a group to support you, as opposed to going it alone. The analogy he used was a flock of geese and studies that have been done to look at why they use a V formation. He said it has been shown that when they fly as flock in formation, they get a boost from each other and don't have to work as hard. They also take turns in the lead role, so nobody has to do the hardest work all the time. When a goose falls behind, he has to work a lot harder than when he was with the flock - and the flock has to work a little harder as well. I've said from the beginning that we have not done this alone. Every day has been made so much easier because of so many people and we are so grateful to everybody. One person can choose to do things alone, but I do think that is a choice. No matter who you are, if you really need help and you are willing to ask for it, there will be somebody there. Asking for help probably hasn't always been my strongest point, but I'm sure learning fast to accept it. I think difficult times also makes you more aware of others who are struggling and how trying to reach out to them can take your mind off of your own little problems. As I have said before, we've certainly grown from this experience. So, anybody need anything?

Miracle Telethon

I got a call yesterday from the miracle network at Riley. They want us to come on the radio Thursday morning during the telethon in Evansville to tell our Riley story. I really didn't expect that. I guess I knew it was remotely possible, just didn't think it would really happen. Hopefully our story will reach somebody somewhere and help inspire them to contribute. I know I am a sucker for radiothons, especially when they play those songs with the family voiceovers. I bawl like a baby and reach for the phone while sniffling and wiping my nose with the back of my other hand. Have you heard Blessed by Elton John? That one really gets me! I believe we will be on WIKY (104.1) Thursday, August 16 at 10:20ish.

The last two nights Gabriel has been conking ou around 9:30 or 10:00 and sleeping until around 9 AM. He is getting pretty regular on his awake times during the day too. It is pretty nice, especially since school starts Monday. We got the boys to bed early tonight, trying desperately to move them towards being able to wake up before 8:30. Monday may be a little hectic.

Blizzard miracle day

Did anyone make it to DQ today? If so, let us know your favorite! I had a heath bar blizzard, although my usual fav is the german chocolate blizzard. I don't really like actual german chocolate cake, weird, I know! Josh had a cookie dough blizzard and we brought home a turtle blizzard for Mom. So, that is the tally in our house.

Margaret (Grandma Maggie) heard about the riley radiothon on WIKY, which will commence August 16-18. I went online and filled out the form to answer phones for a couple of hours. I have never done anything like that before, so I am kind of excited at the idea. I'll let you know if they contact me. I also filled out a form to "tell your Riley story". Not sure what they do with those, or if they'll do anything with ours, but I sent it in. Well, the Reader's Digest version anyway!

Gabe has been deciding to stay up 'til midnight the last several nights, so I am TIRED! He sleeps 8 to 9 hours, but doesn't have to wake up to eat - I, however, still have to wake up to feed him. *sigh* sleep is overrated anyway, right? just agree with me, I'm cranky when I'm tired and have to be right. I think he is actually asleep....is that right? Yep, he's asleep. I'm going to bed - wish me luck, this is usually his cue to perk up and smile adorably.

First Steps

We had our evaluation with FS, and it went pretty well, no surprises anyway. They felt like he was where he should be developmentally in every area except for eating (duh!). We were concerned about the head/neck stability, even though it has been improving. They felt like he was right where he should be for stability. He performed pretty well - I moved a couple of times because he was watching me and not her, then when I spoke he looked over towards my voice, which was another important aspect of the eval. They seemed pretty pleased with where he is. She said we likely could get services related to the swallowing and eating, but the therapist who would do that would likely want a swallow study, which we figured.

Weight check

Our little "heavy weight" is up to 12 lbs, 1 oz! If you remember, one week ago I believe he was 11-7 ish! Progress, progress, progress!! First Steps comes at about 11:30 to do the evaluation to see if Gabe will need any services. Right now he is snoozing, so hopefully he wakes up for it. Sleeping through therapy sessions was frequently an issue in the hospital. I'll write more later, after they leave.

I got some more pictures from the wedding from Abby, sister of the Groom! I'll get those posted here in just a few minutes.

On another note, some of you may have seen the Dairy Queen commercials regarding blizzard sales tomorrow (Thursday) and donations to the Children's Miracle Fund. As if many of us really need an excuse to get a blizzard! Since it is for such a great cause - I would challenge all of you to go and enjoy a blizzard tomorrow, and think of Gabriel and the millions of children across the country that may benefit from it. It is going to be hot enough, so why not? Ditch the diet for one day! If you do get one, leave a comment on the blog and let us know your favorite flavor!