NICU reunion

We RSVPd for the NICU reunion picnic at Riley on September 13th. Don't know how many from Riley still check here, but we are excited we will be able to go and look forward to seeing a lot of people who remain special to us there. That's really all I wanted to say, but since I am here, I guess I can update a little. Gabe has completely returned to his normal self, showing no ill-effects from the head-trauma, physically anyway. Psychologically, may be a little different. If he takes any kind of a tumble, he cries - sometimes screams. He can get quite dramatic about it. Hopefully this will improve. We haven't had any other medical appointments in a while, so I don't know if he will have "white coat" syndrome from his stay in the ER and PICU.

We are in the process of getting ready for the big yearly First Steps eval to determine what Gabriel will need in terms of services for the next year. Our OT seems to think that he won't qualify for her services anymore, which is bittersweet. Our weekly sessions are ultimately moving us towards not needing her anymore so it is nice to know we are reaching our goals, but we will miss seeing her every week. Our PT is in the process of trying to get some orthotic foot braces to help Gabe toward walking on his own. He rolls his feet inward when walking and standing, which she says a lot of little ones probably do, they just adjust and grow out of it - and don't necessarily have a PT around to notice a problem. The process is a little slow b/c of paperwork, but hopefully they will be approved. One concern is that we didn't include walking independently as a goal for this 6 month period, since we didn't anticipate needing it as a goal. Standing was one of our goals, so she is hoping that will be good enough to get them through First Steps. If not, we'll buy them. Our Insurance flex acct would probably cover it, but we don't put any money in it. It just seems like an interest-free savings account, so why bother.
Ok - time for bed!

CDH Awareness Petition

Apparently one organization is trying to trademark and have ownership over 'CDH Awareness'. This just seems very wrong to me. If you have a minute, please follow the link, read the information pertaining to a petition designed to stop this from happening. If you agree with the petition, please sign it. Thanks. If you do sign it, feel free to leave a comment or shoot us an email with your thoughts. Again, our email is jpwittmer@wowway.com

Here's the link:
http://www.ipetitions.com/petition/cdhawareness/

Miracle Blizzard Day!!

I just saw the advertisements for this a few days ago, or I would have blogged about it sooner!! Go get a blizzard and enjoy the treat knowing that you have also made an easy donation to the miracle network. It will help hospitals and families, like Riley, who so desperately need it. I don't have to tell most of you what Riley means to us, you know. For those who stumble across this site - I'll try to summarize.

Uncertainty is never easy, but when the question mark sits squarely on your child's life, the fear that comes with the unknown is magnified. I carried Gabriel for nearly nine months and although I couldn't change what had gone wrong in development, I could do my best to care for myself and ergo care for him. While I still carried him, he was safe. When he was born, what little control I had was stripped away. As parentts, you are supposed to know what to do for your child, what soothes them and how to care for them. They don't come with manuals, but you figure most of it out or rely on the advice of others. I couldn't fix this, couldn't even hold him for a minute and tell him it would be ok. He needed immediate care that was beyond anything I knew about and the helplessness was overwhelming. I didn't know what to do, had no answers, but Thank God we were in a place with people who did. They knew what to do when we didn't. Even when they weren't sure what to do next, they never stopped searching for the answers or the next step. Gabriel was exactly where he needed to be and between their hands and God's hands, we have a miracle of our own. He crawls all over the house, makes messes and has a smile that lights up your soul and chases away even the gloomiest of moods. We can't imagine our lives without him and are grateful we don't have to.

So if you happen to pass by a DQ today, swing through the drive-thru or stop in. Order your favorite blizzard or try something new, doesn't matter. Diet or no diet, you can feel good about what you are doing. If you just can't break the diet (or are lactose intolerant) throw a dollar in the jar, most DQ's collect money for the miracle network. If you've followed our story, you are firmly part of our miracle through your thoughts and prayers - think how amazing it would be to be part of a whole network of miracles.

Just like last year, if you get one, leave a comment and let us know what you got!! I'll probably go for the German Chocolate....