Thursday, February 26, 2009


Mid-winter break. Always a bit of a disappointment. Even as a child I wished to head south for the break and my children are no different. Not an hour after we learned that Ben's surgery was a no go, my clever little man had a plan; "Since I wont be waiting for my belly to get better, it's time to go camping on mid-winter break. To the beach." Huge bummer to make it clear that we just couldn't do it. Tough for a kid to understand that we would have to drive to the Keys for it to be warm enough to camp and THAT IS A LONG WAY. So, we have made the best of our week. In the cold. We made a trip to Build-A-Bear where Kiera picked out the pinkest, floweriest, Kiera-est bear she could find and promptly named it Huggy Bear. Ben looked at every choice and after a good deal of thought picked a good old shaggy dog. When I asked if he had a name for the dog he gave me a look of confusion and said "Skyy. She's a girl dog named Skyy." Aww. We had some great play dates. Long days with friends at their houses where the toys are new and the friends are old. I even got to chat a bit! Great days for all. I did my first ever "sign them in, drop them off and come back later". I didn't even know that you could do such a thing but at IKEA, you can! So I did the short chat to be sure that they were comfortable with Ben and off they/we went. They have never been left anywhere. Off they went. Didn't even look back, just took off to play. AND had a great time while I got to stroll (jog) through the store with a friend. A grown up friend. We talked and had opinions that had nothing to do with whining. Nice. And of course no week is complete without the requisite doctors appointments. We saw Ben's physical medicine doc and got a big thumbs up. Stronger, not tighter, sounds great, looks good. No big changes so not a big surprise. Then we had the milestone 3 year and 6 year appointments. Kiera is 38" tall (75%) and 32 lbs. (50%), had her first vision test and passed and is over all, a precocious neurotypical child. Ben is 47"tall (75%) and 42 lbs! (25%) and his lungs sound clear. I don't know what I like to hear more, clear lungs or 42 lbs. 42 lbs was a fun number to hear. Even if it was after 3 slices of pizza and 2 glasses of milk. I'll take it. It would mean that we have finally made it back to how much he weighed 7/2007. A year and a half to re-gain lost weight. That my friends, is why parents with non-eaters or even CP eaters watch every meal. Easy to lose, hard to gain. The doctors appointments were actually a fun part of the week. Well, except for the part when the doc tried to help us out by freezing the persistent wart on Ben's hand. I can only describe the sound as a monkey and a screech owl somehow fused and both really pissed. We'll forget that part for now, this is a happy post. I even got in on the action and had a doctors appointment today. Off to my yearly neurology visit where I usually wait around for a bit then answer "no" the annoying question "have you had any seizures?" (as if he wouldn't be the first to know) and then listen to him talk about his wonderful children then donate my co-pay to the cause. This appointment was setting up the same way so when the question was asked I gave my "no" and added, but I feel like crap. Can you believe, he stopped and talked to me for a good 20 minutes about how I am feeling. Diagnosis (drum roll please) high stress and bad sleep. Yup, sounds about right. So he suggested a sleep aid. No Ambien for me. Kiera wakes in the night and apparently if you are woken up on Ambien you are liable to wake up in the neighbors driveway. So he suggests something low dose, extended release that allows you to wake up then go back to sleep. Xanax. I had no idea what it was until I read the info sheet from the drug store. Anxiety... panic...Wait a second, so if you take it during the day you have a panic disorder and if you take it at night you just sleep like crap. Hmm, we'll see. Keep in mind that I went to this appointment alone. My wonder mom came in to hold down the fort while I went to the doc. So there I was, driving to get my blood drawn (must be sure levels are correct, no seizures AND no thyroid cells) and I had this peaceful feeling wash over me. Yep, on my way to get my blood drawn, sounds crazy but when you do it a few times a year it stops being stressful. It took me a second to place this peaceful feeling, then I got it. It was simply that I was alone. Not rushing anywhere, not listening to anyone and simply being responsible for myself. Alone for the first time in who knows how long. It was lovely.

Sunday, February 15, 2009


WooHoo! We are home. And sooner than expected! Isn't it interesting that they will send you home sating 93%. We've been admitted at 94%! I'm not going against this one though. They are getting better breath sounds on both sides, only hear the crackles on the right now and he is able to cough again. All heading in the right direction so we are home with 2 antibiotics (one for the suspected aspiration pneumonia and one for the suspected community acquired bacterial pneumonia). This is a snippet of an email I received after Ben's surgery was cancelled: "Wow, I think we all prayed and meditated with great intensity and kept Ben in our hearts up front so we caused the surgery to be re-scheduled. Next time I will be more specific about Ben and his progress." Too funny but hmm... Thanks for all of your positive thoughts everyone!

Friday, February 13, 2009


First, our surgery was cancelled! Wednesday we sent our sweet little SICK girl off with sainted Auntie Kier, finished packing and were off to bed. Made it to the hospital on time and were told immediately that there was going to be a delay. Apparently it had been a crazy night and the hospital was so full that they were taking the outpatient cases first to buy time for beds for the admits. They thought about an hour delay. An hour, OK we can do an hour. Ten minutes later we were called back to talk to the surgeon (dum dum dum dum duuuum) who told us that he couldn't do the surgery. The head of the hospital had just called to have him cancel all admit surgeries due to the fact that the hospital was 20 beds over capacity and the OR were literally full. Our surgeon explained that he would be in surgery all day and all night to catch up with the emergencies that came in the night before. That was when my head started to spin. The thought of all the prep that went into the last few weeks came flooding over me. I'm gonna have to do all this again? We were ready. All of us were really ready. Ben was prepped, I was prepped, Kiera was prepped, Dave was even prepped. Crap, crap, crap! After I shook off the YOU ARE KIDDING ME fog, some more info came out and the cancel didn't sound too bad. Like, our surgeon had already been busy that day and it was 7:30a. And, the beds upstairs were spilling over with really sick kids. And, because the laproscopic takes so much longer they were going to skip trying it and go right to an open surgery. OK, cancelled is not so bad after all. You ready for the punch line? Ben was admitted today after all. FOR PNEUMONIA. Yup. I took Ben to school yesterday (since he didn't have a pesky surgery to worry about) just a bit before lunchtime. I stuck around through lunch and then was on my way to pick up Kiera and got a call from school. Ben had climbed into his helpers lap and didn't want to move. He finally did sit to watch a movie and promptly fell, hit his head, cried, coughed and threw up. Oh yeah, and he has a temp. After a night of vomit, phlegm and lethargy we ended up at our docs this morning where he was found to have crackly lungs and sats at 88. Crap, crap, crap! So there he is, in the hospital with every other plague ridden child in a 100 mile radius. Little man up in the hospital, sick. Little Kiera at home with Nana, sick. Mama running around wanting to make them both feel better, sad. All of us, very tired. This life is not a roller coaster. It is a series of car accidents.

Wednesday, February 11, 2009

Here We Go

OK folks, those I know and those I don't...
Send all of your healing thoughts to my little guy tomorrow.
Check in at 7:30a, surgery 8:30a. Around a 5 hour surgery.
Give Ben your best thoughts to help his little body stand up to what it will go through and heal quickly so that he can move on from this.
I'll be thinking of all of you who have sat in waiting rooms before and drawing on your strength. Thank you all.
Much love,