School Pics

When I dropped Ben and his nurse off at school, I got a bag of stuff from his aid. Mostly it is just papers and things from his missed week of school, but the real treat was his school pictures. I've been anxiously awaiting them for the past three weeks. They turned out great and I just LOVE them. I can't get over how old he looks in them and he looks so sweet.

Back at School

Ben is back at school today and I think he is thrilled to get out of the house. Hopefully he has a good day. He is back to his old self and doesn't seem to be in any pain. He is even tolerating the nose dilating really well. He never fails to amaze me!

Feeling So Much Better

Ben is feeling so much better today. He is amazing with his recovery. We are working towards getting him back to full feeds and his bloody drainage is much less.

One Night Down

Ben had a decent night last night (considering). He rested on and off all night and I was able to manage his pain with Tylenol - I didn't want to give him Osycodone unless he really needed it since it upsets his stomach so much. The bleeding was our biggest problem. He had so much blood running down his face from his nose, pooling in his mouth and coming out his trach. I dilated his nose for the first time this morning with the help of my mom and the nurse. It was every bit as awful as I was expecting - I won't get into the details of that.

Ben is home from the hospital

Ben's coanal atresia surgery went fine today. We were surprised when the doc said he wanted him to stay overnight to give us time to learn how to dilate his nasal passages. I really, really didn't want to stay overnight and after enough pleading and explaining what a quick learner I was, the doctor said that was fine. He had a resident come to recovery and show us how to dilate and had me try on Ben after watching him do it twice. Poor baby. Even with heavy Morphine, that sent him through the roof and caused so much bleeding. I get sick to my stomach thinking about having to do that twice a day for the next 10 days. Ben is hurting pretty bad right now and is a bloody mess. His nose, mouth and trach are draining copious amounts of blood. I don't remember it being so bloody previous times.

Let's hope Ben doesn't have to go through this for nothing... stay open nose! He won't be going to school at all this week. They said he will still be too bloody. We canceled our night nurse for tonight because he just needs people who know him taking care of him. My mom is coming up to help.

Surgery is Tomorrow

Ben is all set for his coanal atresia surgery tomorrow. It will be an outpatient surgery and he is scheduled for 1:04 p.m.

Can't Get Enough of MICKEY!

I've mentioned in previous posts that Ben has developed an obsession for the show "Mickey Mouse Clubhouse". I bought him a few Mickey Mouse books and he LOVES them too. Ben has grown so attached to one of his books that he takes it everywhere with him... walks, to school, holds it during tie changes, in the car, etc. I tried to take him to the grocery store and made the mistake of leaving the book at home. He cried the ENTIRE car ride and time in the store and back home. Sorry Ben.

Last night Ben took the book to bed with him and wouldn't even let go of it when he fell asleep. How cute are these pics. (Ben sleeps with his eyes open because of his facial palsy and the room is actually dark, the flash just makes it seem bright in there.)

Great Day - We Needed One!

Ben had a great day today at school. He had very few crying episodes and seemed to enjoy himself most of the day. The highlight of his day was the visit from the local fire squad and tour of the fire truck. Ben LOVED it and the fireman were SO sweet with him. One of them even asked if he could carry Ben and walk him through the fire truck! How sweet is that?! And Ben loves men, so he couldn't be happier. He actually cried when it was time to leave. We needed a great day like this before surgery.

New Surgery Date

After I didn't hear back again about a new surgery date, I emailed our ENT doctor. I explained the situation and the trouble with the surgery being pushed back. I'm happy to report that I got a phone call a few minutes ago letting us know surgery is going to be on Tuesday, October 21. And luckily, I still took Ben to his physical yesterday just in case surgery was in 30 days and also to get his flu shot.

It's amazing what can be done when the doctor is the one requesting it instead of the parents. Let's pray for a successful surgery and speedy recovery. This will be the forth time we have tried to open Ben's nasal passages, but the first time trying without stents.

Not Ben's best week at School

Ben wasn't in the mood for school this week. He seemed happy to get there, but shortly after school started and he didn't get to do things his way, it all went downhill. He was very grumpy, cried a lot, won't wear his implant much and tried to bite the closest person to him in his anger fits. Poor Helga (Ben's aid), got bit at least once a day and Ben left teeth marks once. So sorry Helga. Hopefully this soon passes and Ben becomes the hard working student again.

Surgery Canceled ... probably

We got a call from Children's today saying that Ben's coanal atresia surgery (opening his nasal passages) scheduled for next Friday is canceled for now, but may be put back on the books. I guess the doc "may" be going out of town and is canceling everything for now, but there is a small chance he might not go at the last minute. WHAT?!? And that was the answer I got after lots of prying.

So, they are rescheduling everyone on that day. For most, no big deal... for us, a huge pain. His big urology surgery was specifically scheduled two months AFTER this surgery... and the next available date for the coanal atresia repair is December 16 - a day AFTER the urology surgery. That obviously isn't going to work. They are trying to see if the O.R. can give them any extra time so Ben can get his coanal repair done sooner. Also, Ben was scheduled for a pre-surgery physical on Monday for this surgery. We've decided to keep the appointment since I've arranged the nurse to stay longer that day. We will have Ben get the flu shot during that visit and in case surgery does happen in the next 30 days, he will have a current physical. Our Friday nurse will now have to be re-scheduled for that day. Hopefully she didn't get booked on another case already.

Misc. School Pictures

Ben's teacher sent me some misc pictures she has taken of Ben at school.

Ben has started wearing his implant at school for most of the day. He goes into the "quiet room" first thing in the morning (the quiet room is also the observation room) and plays with some of his musical toys (we sent his favorite music box to school for this purpose). He is willing to put his implant on to hear his music box. Once the implant is on, he will leave it on until he gets upset or it falls off. He goes into the "quiet room" twice a day to get his implant on. So far, it is working like a charm!

This is Ben getting his foot painted for a special craft they made. Rumor has it that we can order items with his foot print on around Christmas time.

And this is Ben sitting on a wedge at school like a big boy. He only has a little support from Trish, his PT. I love this picture!

Mickey at School - A Dream Come True!

Ben LOVES the show Mickey Mouse Clubhouse. It is all he wants to watch when he watches TV . And the show gets him all wound up and vocalizing like nothing else (he use to have this same obsession with Yo Gabba Gabba but his taste has matured to Mickey).

Ben's school knows about his love of Mickey and today I couldn't even pry his Mickey Mouse Clubhouse book from his hands, so he took it to school with him. His teacher and aid decided to pull out a Mickey Mouse matching folder game they have... and Ben's expression was priceless. I'm so thankful they had a camera to capture that moment! (After seeing this picture, I'm glad I took Ben for a haircut today too... he hair was a tad unruly).

Visit with Ben's Great Grandma

My grandmother is currently in town and we got to visit with her all day on Thursday. It was wonderful having her here. This is the first time she has made the trip to Dayton/Cincinnati since her husband/my grandfather passed away. It was a big step for her. My mom stayed with her in Pennsylvania for a few days then brought her home with her Wednesday. She will go back on Sunday. While she was visiting us in Cincinnati, she got to see Ben in school, paint pumpkins with us and just visit. We enjoyed seeing you Grandma!

Sad News

Our CHARGE friend Lucas passed away today. Our hearts and prayers go out to Lucas' family. I'm so sorry to hear this news.

Pray for Lucas

One of our Charge friends is very, very sick right now. Lucas came down with an awful bug that put him in the hospital. The bug has caused a lot of life threatening problems for him and he is in the ICU right now fighting for his life. Please pray for Lucas and his family. The doctors have told them they don't know if he is going to make it. At this point, they are praying for a miracle.

To read more about Lucas and his struggles, check out the link to his site on the right of this page under "Favorite Sites". When something like this happens, it reminds you how precious every day is with our little CHARGErs and how something like a bug is all it takes to cause so many other complications.