Sunday, November 30, 2008
I was thinking that I would get on here today and wish everyone a late Thanksgiving and then boo hoo a bit about how we are all on antibiotics and how I actually missed Thanksgiving all together because of this bug. Instead I am here to say that I am so incredibly sad. One of our worlds brightest lights went out yesterday morning. My friend Robyn has lost her battle with Cystic Fibrosis just 8 days after her 34th birthday. She was one of the strongest people I have ever known. She lived her life. With love and joy. She laughed easily and often. She shared a quiet warmth, strength and happiness with everyone she met. She was so strong and brave that in a way you felt that she might be the one to hold off this cruel disease until there is a cure. But then she got sick and what would have been and inconvenient cold to most of us was too much for her body to take. She was a wife and loving mother to her own little 3 year old angel and my heart breaks for her family and everyone who loved her. She will feel no more pain. We will miss her always.
Wednesday, November 19, 2008
Today everyone is OK? I swear the world is toying with me! Ben woke a couple of times in the night crying and feeling sick and you could hear the air moving around in his belly from the doorway. This morning his tummy films showed that his stomach looked pretty close to what it looked like last Monday. What we assume was gas build up had resolved itself. So not great, but not worse and no upper GI, YAY! But, that nagging little feeling at the edge of my mind is that this was not a stomach bug so how often will this happen? He just missed two day's of school again due to stomach pain. I guess I'm just not sure how to feel about this. Relief that Ben isn't headed for surgery tomorrow, fear that he will be in this amount of pain regularly, confusion about what is exactly going on and of course more fear and a bit more confusion. I can't shake the feeling that we dodged one this time and now we are just waiting nervously for the hammer to drop. And my big dumb dog? Walking around like nothing ever happened. Toying with me. All of them... Must be time for a party ; )
Tuesday, November 18, 2008
Last week we had our follow up with our surgeon. We did another tummy film and an upper GI. Not Ben's idea of a good time. I know that you won't even taste anything new but here, lay on your back and swallow this nasty crap. Ben's upper GI confirmed that the fundoplication wrap and a considerable portion of his stomach have herniated into the space above his diaphragm. It took about 2 swallows for the whole room to get really quiet. The GI doc on the other side of the lead glass went from smiling and waving to extremely stern looking, real quick. During the GI study is looked like Ben had two stomachs. One about the size of a baseball or small grapefruit above his diaphragm and one fairly gas distended below. Unfortunately the only good news is that even given the large portion of his stomach that has herniated, he is considered borderline for surgery and some people can live like this for years. Bad news is that it is eventually surgical and the surgery is much more involved than the last one. This one can't be done laparoscopicly. It is a full abdominal cut, undo the wrap, reset the stomach, redo the wrap and stitch the opening in his diaphragm smaller. You know, all of the complications that Ben didn't have on the first one, well lets try again and see how we do. Especially since you were so gung-ho about giving it a try in the first place... So the plan was that as long as he stayed asymptomatic we would watch him and let him grow as much as possible. Ben was out of school today because he began complaining of stomach pain again last night. It woke him in the night a couple of times and kept him lying low today. This afternoon the discomfort increased and then he vomited. Soooo... We are headed back to the hospital for more tummy films and possibly another upper GI then a re-evaluation with the surgeon. If his tummy looks OK on the films we may just be dealing with a bug but if things don't look good that changes where he sits on the surgical ladder. Here's hoping for a stomach bug! Oh, and it seems that the dog and Ben have some sort of E.T. thing going on. She was on deaths door when Ben was in the hospital a few weeks ago but was looking pretty good until today about 15 minutes after Ben threw up. Not to be outdone she had a seizure and peed on the floor and hasn't been able to do more than walk across the room before she collapses. Really? It this how this has to go? Really? Haven't we earned the "spread out the crap storm" credit yet?
Sunday, November 16, 2008
Have you seen Ratatouille ? Well, if you have I had an Anton Ego tastes ratatouille moment. I was walking into the hospital to do some Fashion Show work and passed by freshly cut-back grasses. The scent hit me like a wave of warm water and literally pulled me back to my childhood in a way that I haven't experienced in, well I don't know how long. It stopped me in my tracks. It instantly filled me with joy followed just seconds later by excruciating pain that made my breath catch. You see, that scent, that smell shot me back into the green fields of wheat that used to grow behind my moms house. But it wasn't my mom's house then, it was my parent's house and the feelings that washed over me were freedom as I ran through those fields, innocence, adventure, security. It was warm, I could actually feel the warmth wash over me as I remembered what it felt like to have no fear, no worry, no concept of real pain and loss. I held onto the feeling as long as I could and then the shear force of reality nearly took my breath away. It was just a second of childhood innocence but feeling it replaced by 30 years of life's harder lessons all at once... I used to be that little girl. I used to believe. I have lost that little girl and it breaks my heart.
Monday, November 10, 2008
I would like to invite you to point and laugh. And it's for a good cause! Dave, Ben, Kiera and I have once again put our pride aside to be models for the Fourth Annual Fashionable Growth Fashion Show and Silent Auction on Thursday, November 13, 2008 at 5:30pm. This is a fantastic project that we have been working on as members of the Family Advisory Board for the St. Joes NICU since one of our members convinced us that our little group could pull off a fashion show. Now four years and four fashion shows later, we have raised thousands of dollars that have been used to enhance the experience of families in the NICU. This year's event is being held at Washtenaw Community College, Morris Lawrence Building. It is a huge auditorium to fill so please, come one, come all! The evening will begin at 5:30pm with a silent auction (featuring around 80 generously donated items) and appetizers. The Fashion show will begin around 7:00pm (barring blizzards) where you will get to clap, sigh and maybe even cry but leave full of hope and wonder for the amazing children and families that have been touched by the NICU experience. The evening wraps up with a little dessert and a lot of check writing for the winners of the wonderful silent auction items. Back to those seats we would like to fill...we would love to see your faces looking back at us from the audience so we are not giggling by ourselves while we try to model beautiful clothes and wrestle our two monkeys (Ben and Kiera) at the same time. Tickets are $25 dollars this year and TOTALLY worth it! Drop me a note so that we can be sure that the auditorium is filled with just our friends and loved ones since we would hate to look silly in front of anyone else : )