Friday, September 21, 2007

Sigh - three steps forward, two steps back

Okay - I am REALLY, REALLY trying to stay positive, but it is getting hard. Today has been another hard day for poor Cainan. Although, let me start with the positive stuff. He did better with eating today. He seems to like the "Wheels on the Bus" song, so when I sing that while I am shoving food in his mouth, he is pretty quiet. Today went better. AND he got to sit in the highchair and eat fruit (soft pieces of peaches). I thought he was going to jump into that highchair. He was so excited to sit there! He kept signing "more, more" when I was feeding him. I know he just wants to get back to a normal kid diet. Baby food can't taste that good! Plus it is not fattening so he has to drink 3 cans of pediasure a day - huge challenge! He loves it, but 3 cans is a lot for anyone his size. (8 ounces each) We are coming to a truce on the food - a least for today.
Anyway, the ear nose and throat doctor checked his ears today (1 week post surgery) and said all looked great! We don't have to see her again for 3 months. Yeah - another positive! She was so impressed with his nose surgery as well. The whole office was checking him out while we were there (last time they saw him he still had his huge hole) They were all impressed. Cainan was eating up the attention giving lots of smiles and waves.
We only had 1/2 hour to relax after that appointment before we were off to have his helmet adjusted. While I had him on the floor, I took off his helmet and noticed significant breakdown on his head at one place. Ugh. I had to take his helmet off until the helmet adjuster could look at it. Breakdown - no good. Plus he still has some redness in spots on his head and I wanted her to see that as well. And then the worst thing - while I was wiping his face, I got a good look inside his mouth. I was looking at his lip and I saw.......yep, it was SPLIT!! The other day, when he bit his lip, he must have loosened his sutures. Now he has a huge split inside his mouth where his lips should be attached. Good thing I was going to the craniofacial office. (The helmet and cleft stuff comes from the same office). So when we got there, the lip started to bleed. Again. So they took him back and the physician's assistant looked at it, and declared he had indeed split his lip. She immediately called the surgeon, and we got the bleeding stopped. After speaking to the surgeon (who was across the street in surgery) he said that the lip would have to be redone. I about lost it. I knew that was going to be the answer, but we were going to have ANOTHER surgery. I asked if they thought it was extensive, and she said that from what she could tell (the PA) it didn't look like it involved the muscle, which was a good sign. But they wouldn't know until they got in there. If it involves the muscle, we will have to spend the night in the hospital. If not, we can go home after the surgery. Monday is our surgery day. We have to go in at 6am. No idea what time we will actually be operated on, but at least we should be one of the first cases. So back we go. I am going alone - Mat will take the girls to school. If it ends up that we have to spend the night, Mat will stay this time. (probably as long as I feel the nursing staff is adequate). Please pray he did minimal damage and we can go home after a few stitches. He will have to be on a liquid diet for an extra week and won't have the sutures removed until the 2nd of October. Poor little guy. He is going to FREAK.
And then the helmet. The helmet adjuster was sad about his breakdown, but she said it is common for kids who sleep on night and don't move around much - especially in the beginning of the wear. So she said we have to leave the helmet off until the wound is heals and ALL the redness on his head disappears. She said it could take a few days to a week. We could lose all the progress we have made so far, which will REALLY stink. His head was actually looking a little better already. I know Cainan is happy to have a little break from his helmet, but this just means he will have to wear it longer in the end.
So our three steps forward were the helmet, the tubes placed in his ears and the cleft surgery. The two steps back were the helmet and the surgery. I know this is all temporary and will soon be a distant memory, but I am tired and discouraged. I look at our poor boy with a red head, a crusty upper lip, tubes in his nose, arm braces on, and a heat rash over his whole body and think - what is going on here? Bu when he smiles, and takes it in stride, I realize that is what I need to do as well.
I look at our calendar which is filled for every day, and feel extremely overwhelmed. I think for once I need to stop looking at the big pictures (the whole calendar) and take it one day at a time - one appointment at a time.
Thanks to everyone for the words of encouragement and for all the insurance advice. It was all very helpful and uplifting! For those of you who know me well know I won't stop fighting until I get what I want. :)
Here are just a few little pictures

Arlington playing peacefully in the playroom. The babies were upstairs and she was not bothered!
Hello there - fell bad for me still. At least you can see my head today!
I never stop moving .long enough to get my picture taken. Plus - I love milk


Marilyn, Paul, PJ, & Chris said...

You guys have come so far. Must be ridiculously frustrating for all of you, but when you think not that long ago, Cainan was in an orphanage and you were anxiously awaiting his arrival, you have come such a long way.

You are in our prayers. Hang in there.

Marilyn Rhude

Anonymous said...

All of us at my new church (Calvary U P) are praying for all of you. Please don't get discouraged, God will keep you and bless you. Nanny

Anonymous said...

Oh Jennifer, you will get thru this part too!!! You are right to just take one thing at a time. It can be overwhelming to "see" what you have to do. Just plan your day and pray it works. If it doesnt, its OK. You will be able to look back and wonder how you did it all, and laugh.