I love sharing some of the silly things that my kids do. Today is no exception. I took Lillian to the dentist early this morning and left Matt and Marissa home with Philip. Philip not being a morning person was having a difficult time waking up. Matt was hungry so Philip asked Marissa to get him something to eat. A few minutes later Philip checked on what Marissa was feeding Matt. Any ideas? Marissa was feeding Matt gum. Yes, a yummy minty breakfast.

Congradulates us on our new baby Boy

Well Philip finally gave up and got us a dog. He is 9 weeks old and a shiz tu. The girls named him Charlie Sniffers. He loves to sniff around. The first time the dog saw the girls he ran up to them and started kissing their faces. If Charlie Sniffers could talk I swear he would be saying 'Marissa tastes like cookies'.
Charlie Sniffers has been with us almost a week now and is remarkably a good dog. He sleeps through the night and understands the word 'No'. I guess this means he already has one or two up on his older siblings. After writing that sentence it all makes sense why I like the dog. We heard him bark for the first time today at a toy chicken that squeaks and is dressed up in a Santa suit. He really likes to take out his aggression on that toy. I have tried taking pictures of Charlie Sniffers but as soon as I get down to his level with a camera he gets to close.
The kids loovve the dog. They fight over who takes him out to go potty and have already given him a bath (without bothering to tell Mom about the bath). Well now with four children our family now feels complete.

The silliness continues. Lillian official put Marissa into the 'kids with scars club'. Marissa came into my room, pulled up her shirt, and showed me a scar drawn on with marker. Lillian did the art work. The scar was just like Lillian's in both length and width along with chest tube markings. The silliest part is now Marissa, just like Lillian, wants to make sure that the shirts she wears each day does not show her 'scar'. She wants to take heart meds like Lillian as well. I think apple juice in a syringe is a bit much but it makes Marissa feel like part of the group.
Halloween was fun and much warmer then it has been in past years. I wished I could throw away at least half the candy but who's kidding who. I have a bigger sweet tooth then most.
Matt is walking almost 100% now. He thinks that anything he can reach is automatically his. It has been a week of learning that cups too close to the edge of a counter or table is a dangerous and messy thing.
The plane tickets have been booked for California. We will be there Dec 24 through Jan 1st.

I know, I know. What have I been doing that is so important that I haven't blogged?

Ok, no more excuses on why I haven’t been blogging. We have moved and are now settled in a beautiful home a whole four houses down from where we lived before. For those of you who aren’t in touch with us on a regular basis: our house sold in 10 days with a cash offer. I don’t know about you but I was pretty stressed out. Plus, Philip was out of town for four of those days. Needless to say I have been busy organizing and cleaning.
Lillian has had a personality flip on us. Once our outgoing, always had to have a friend over and who loved school: now doesn’t like hardly anyone, thinks everyone is against her, and loathes going to school. The transformation is very noticeable even to friends that stop in only once in a while. Philip and I will be interviewing a therapist on Tuesday to see if he might be able to help her. My mom thinks she has ‘post traumatic stress syndrome’ from her surgery in August and recent behavior has pointed to that. Lillian continues to love reading and reads chapter books with a little help here and there.
Marissa is growing up so fast that I feel that if I blink she will be a teenager. She has been going to preschool and loves it. Although I should point out that she says that she ‘hates going’ but she is just copying what Lillian says. She sings all the way to school and back. So you might say ‘that the proof is in the pudding’ or something like that. We had to chop off her hair to her chin because she kept cutting it herself. The hair cut is very cute and very Marissa. She also has mastered doing puzzles and is so proud of herself.
Matt is walking! Well, not totally yet. But he walks when he thinks no-one is watching. He is so carefully and if he talked I could just imagine him saying ‘woo woo’. He is going to ‘kids on the move’ classes and hates it. We are trying to get him to communicate with words rather then just pointing but he gets so so so frustrated. So why bother? Well, the kid started biting and banging his head when he did not get something that he wanted. So since we were concern about possible brain damage from the banging and since being bitten every couple of hours wasn’t working for me he is learning to communicate in a more constructive manner. Matt has only been hospitalized once for breathing issues since we have been home from his surgery in Aug. and it was only for one day!
Well…, after re-reading my blog it sounds like things are hard, but they really are going well. But anything is better then being in the hospital. Our holiday plans are us staying here for Thanksgiving and going to San Diego for Christmas. If you will be in either area during those times and want to get together, please contact me so we can see you too.

Post-op

Today was the day to get the clear to fly home Sat. Did we pass....not yet. Matt has been running a temp. of 99.6-101.6 the last two days. His O2 is 97-99% and his chest x-ray is clear so that rules out pneumonia. Matt had blood taken today and we will know tomorrow...hopefully. The chance that it is just a viral infection is pretty high (like the cold or flu) because another child who was hospitalized at the same time has the same symptoms and hers is a cold.

We are OUT

After what seemed to be an eternity of tests and paper work on Monday, the kids got out at 4pm that afternoon. Lillian is trying so hard to be happy. She came home with an itchy rash from the tape that covers her chest, including her scars. Then to top it off had an allergic reaction, in the form of another rash that covered her chest and neck. She is taking benedryl and has cream to put on her rashes, but it doesn’t seem to take the rash away quickly enough. Her cousin, Sam, is the greatest cure for Lillian. He entertains her and helps keep her mind off her itches.

Matt is zoned. He can’t seem to sleep. The night before discharge he slept only 2 hours, from 2am-4am. I took him on wagon rides through the IMU all night. Today, he took maybe a one hour nape and is crying right now trying to go to sleep. The poor guy. I have watched a movie with him and have tried rocking him. He probably is stressed out from the hospital stay and no-one could blame him if he is. The good news is he came home on no O2. Matt's surgeon says he will still have some breathing issues and considers the surgery a success if he is only hospitalized twice this fall. Maybe if we are super blessed the hospital won't happen at all.

If you can’t tell we are feeling a little sorry for ourselves. Both Matt and Lillian can't go swimming, to the park or even take a deep bath for 6 to 8 weeks. (There chest can't have any water sitting on it.) I am administrating over 30 meds a day between the two kids. I draw them all up in the morning and have a sheet that I made out with an hour by hour detail of what needs to go to which kid. Maybe, the meds will get reduced when we go to our post-op appt.

Even Marissa is feeling poor and picked on because she doesn’t get any of the meds:> Silly kid. Monday night, our first night back and Marissa had night tares, twice. Meaning she is screaming in her sleep and doesn't wake up. Philip, the great husband that he is, got up both times with her and ended up curled nxt to her this morning.

Both kids have a follow-up appt. on Thursday at noon. That means more tests and x-rays. Yea…and yes that is a sarcastic yea.
I managed to get a three hour long nape today. My sister, Leah (flew in today to help out), and my mom watched the kids and handed out the meds. Tomorrow will be easier. I don’t know how, but the lie is how I keep on going and maybe one day it will be better.
Matt stopped crying and is hopefully sleeping restfully. We will be back Saturday to Utah. My mom is helping me fly with the kids.

Lilly & Matt are doing well!!!

Matthew had his ct scan on Friday. It was supposed to be at 8:00 so they stopped feeds at 2:00 am. They did not get him in until 11:45 so he was starving and upset. The results of the ct scan were better than Heather and I had expected. His airway has opened some. Matt went back into the O.R. Saturday morning for a bronchoscopy. His dr thought that there may have been a mucous plug but it turned out to be a floppy portion of the airway. Although his airway has opened, it is still smaller than it should be. It is our understanding that he will continue to have some respiratory issues but may grow out of it in a few years. He is doing well and is always happy. He is off most of his meds and breathing on room air. I took him to the play room today where Lillian was hanging out with the life specialist. He played until he fell asleep on the floor. He was moved to the intermediate care unit this evening. This is a big step towards a hospital discharge.

Lillian has turned a corner and is showing signs of the happy little girl that we know so well. She was transfered to the intermediate care unit on Friday afternoon. She is off all of her pain meds. The child life specialist spent about 5 hours with her today. They painted each others nails, played games and covered a doll with band aids. This gave Heather a much needed opportunity to get some sleep. Lillian has a ct scan on Monday and then will most likely be discharged. She is excited to start 1st grade next Monday and is looking forward to seeing her friends. It's hard to believe that just one week ago she underwent an 11 hour surgery. She is truly an outstanding and very special girl.

Marissa and there cousin Sam came and spent part of the day with Lillian on Friday. Papa sat with the kids for a few hours this evening so that we could take a break. When we got to the hospital, He and Lillian were watching High School Musical 2 and singing along. Now he wants a shirt to match Lillian and Marissa's. LOL!

Heather is flying home with the kids next Saturday night. Her mom will be going with her to help out.

Both Lillian and Matthew are tentatively scheduled for discharge on Monday.