Where the heck did February and March go!?

So I honestly intended to be a better blogger. So much for that! I feel like I posted just the other day and it was 2 months ago! Luckily, not too much has changed. Good for our family, since change usually means worse. Andy did have a couple of hospital stays over the last 2 months, but did great. He caught RSV and a bad Roto virus, along with the rest of the family. It was a yucky couple of weeks! He's actually back down pretty low on his O2, already and we're hoping if we take it easy he can be off by Easter. The kid needs to hunt eggs without a hose attached! His sisters don't baby him! He needs every advantage he can get! :)

We are starting to get things cleaned out and packed up. If all goes well, we should be moving in about 5 weeks. I'm pretty darned amazed at how much stuff we've managed to cram into this small place! I"m actually a bit impressed with us right now. ;) All in all, the preparation is going about as well as one could expect, being that there are 3 crazy kids running around here and one of them insists on going to the hospital every 2 weeks :)

Spring Break came and went without too much excitement (other than 3 black eyes-Cammie, Andy and my niece, Maty). We mostly just lay around the house, enjoying lots of lazy time. We booked a condo at the beach for later in the summer. We'll do something fun when we're sure Mr Man is doing well enough to enjoy it too.

Cookie baking fun


S'mores Time
Andy playing with his bud
Cam's black eye- she ran into a door knob
Andy's black eye- he was laughing and threw himself forward into the corner of the train table :P

Bad Blogger!

wow..its really how sad how long I've been going between posts!
The whole family is doing great right now! Andy has been home from the hospital and feeling super terrific for a month now! He is still on every two week steroid infusions and seems to be adjusting to them well. He started taking oral steroids every other day and gained 2 pounds in 2 weeks! We really do have a chunky monkey now! He is starting an oral chemotherapy medicine this week. We have read some good things about the meds and his disease and are hopeful that it will force everything into remission. It should definitely help get him off of these crazy high dose, frequent steroid infusions! We are all happily enjoying hermit time, since the little man is pretty much housebound during the rest of cold and flu season. We did get out to the zoo the other day and everyone had a blast! It had been so long since we had been anywhere and the weather was beautiful! Other than that, we have all just been slowly cleaning out the house, getting ready to move in the next few months. Luckily, we are moving right next door so we don't have to fully pack everything! :) The girls are having a good time picking out new bedroom stuff (they will finally be in their own rooms!) and I've been trying not to make Daddy too crazy talking about moving. I'm a bit excited to finally have more room :)

And the Christmas countdown begins!

We had a very nice Thanksgiving this year! Thanks to Aunt Linda, Aunt Martha and Nana for all the wonderful cooking and for putting up with us and our crazy kids for a whole afternoon! :) My friend and I woke up at a scary early hour (4am!) to head out for some shopping on Friday. We really didn't NEED anything. We just decided to torture ourselves with too little sleep and crowds. It actually ended up being really fun and we both found some good deals and I was able to finish the last little bit of my Christmas shopping. It was nice to get out and wander around stores with no kiddos for a while. :) Saturday, we had our annual Johnson City Christmas lights parade and after party night. We're still recovering and there may be a few embarrassing Xbox Kinect dance game videos of all of us floating around the internet somewhere. In between all the fun, we managed to get our tree up and decorated and our Christmas card picture taken. We are all so excited about Christmas being so close! Love this time of the year!!

Where to start....

We have had a busy month and a half! Andy ended up going back to the hospital 16 days after his last pneumonia stay. This time, it was the bleeding and no pneumonia. We had them place his port in his chest before we went home and have started doing 3 day steroid infusions, every two weeks. We are on day 2 of the first go around. Its been a little hectic, but we're working on smoothing things out. Andy is the first patient at Dell Childrens' Hospital to have regularly scheduled pulse steroids for idiopathic pulmonary hemmhoraging. Lucky him. :) This fun little tidbit means that the hospital has no set protocol for scheduling the infusions. This week, we are checking in to the hospital for a few hours each morning and checking out after his steroids are in and he has been observed for an hour. Not ideal. We talked to the docs and by the next course, we will be going across the parking lot to the childrens' blood and cancer center for his infusions. Its a little less hectic there, as it is like a regular doctors office with extras. We already see Andy's hematologist there, so we're familar with the procedures and such. Right now, Andy is on an extremely high dose of steroids with each infusion course. The next step will be getting him on a really good anti inflammatory medication so they can begin backing off on the steroids. The new doctor with our pulmonology group has seen this combination of steroids and meds yield great results with lower side effects. Good news for us!

Life for the rest of the family has been pretty calm. Jordan lost her second front tooth and is now being tormented by Mommy singing "All I Want For Christmas Are My 2 front Teeth" everytime she walks by. She complains, but i'm sure deep down she loves it! :) She seems to be enjoying 2nd grade, but is already counting down the days until summer vacation :) Cammie is doing great in her first year at the "big" school. She loves her teacher and the feeling is completely mutual. She had nothing but good things to say during our conference. I must admit that i had to ask her a couple of times if she was sure she had wanted to talk to Camryn Love's mom. :) I'm happy to see that she is so well behaved in the real world :) Both girls are bouncing off the walls excited about their joint birthday party this weekend. A building full of bounce houses, sugar and a ton of kids...should be a blast! Ray has been busy at work, and i have been busy playing the drive back and forth game. We are all really looking forward to some much needed time off at Thanksgiving!

Just Pneumonia

Do you ever think about the things you've said during the course of a day and wonder if people think you're a little off? :) As most of you already know, Andy had another hospital stay. Much shorter than the last three, thank goodness! I was sitting in the ER with the little man, waiting for them to get a room ready for us and realized that the nurse was looking at me very strangely. I was on the phone a few times with different family memebers and friends while she was in the room getting things together. She finally asked me if Andy gets sick often. I explained his issues to her and that we are a "frequent flyer" at the hospital. She started to laugh and said "that makes sense!" I asked her what she was talking about and she said she had been surprised by how calmly and almost happily I would tell someone that yes, Andy is sick, but its just pneumonia! It made me think back to his last cardiology appt when his doctor laughed at me for wanting a "normal" week or two long hospital visit. Makes me laugh. Our normal is a little crazy, but we'll take it over what we've had to deal with the last year!

The man is feeling very good now. The steroids really do seem to make a difference. As soon as he was given the 3 day course he started to improve very quickly. We have pretty well decided that its time to have a chest port put in and start going in for monthly infusions. We aren't going to take the chance that his medication will keep him well. At this point the good outweighs the bad when it comes to steroids. His body is harming itself more than the steroids will. We see his pulmonologist on friday and I will let everyone know all the final decisions and plans.

School!

Monday was the first day of school for the girls. Jordan is the second grade (when did THAT happen??!!) and Cammie started Pre K at the elementary school. I'm so excited that our elementary introduced an all day, open enrollment Pre K! Camryn misses the age cutoff for school by less than two months and she is so ready to be at school! The girls had a great first day after a bit of a rocky start. The parking lot and drives were CRAZY yesterday morning. We ended up having to park down the street and walk the kids to the school to drop them off. For those of you who haven't been to our school, thats not an easy task. There are no sidewalks around the school and the road is tiny! The parking is very limited because of its location. All of the parking spots are along the front of the building, where people are driving through to drop kids off curb side. Its very difficult to get out of those spots if you choose to walk your kids in or are walking in to pick them up after school. hopefully it will all get worked out soon. I've scoped out the area and have a plan for this afternoon so I don't get stuck in my parking spot for 30 min AFTER I pick up the girls. Again. :P
Andy started his home-bound PPCD class today. The teacher, speech and occupational therapists are all very nice! I'm hoping, in time, Andy will come to see that as well. Today, he was less than thrilled with them. My normally very outgoing little man is out at the moment and Cranky M'Gee has stepped in to take his place. We are anxiously awaiting the return of Andy. :) He loosened up a little towards the end of the session and i'm hoping as he gets used to our new early bird schedule things will improve.
As for Mommy and Daddy, we are happy to have things started and our new schedule all worked out. We tried hard to get a lot of projects done before school started and managed to accomplish quite a bit. Our deck is stained. We painted kitchen cabinets an walls and are now stuck with no door/drawer pulls until we can make a decision :) All in all, its very nice to have a very clean house, one kiddo at home and time to work on scrapbooks. Maybe I'll manage to catch up on the last couple of years in pictures. Or maybe I'll go play World of Warcraft while Andy naps ;)

The Beach

We were finally able to take the kiddos to the beach this summer! Everyone had a great time! Andy was crazy about the water and had a blast throwing toys into the surf and watching them wash back up. Cammie was all over! She tried catching fish in buckets, dug for clams and searched for jellyfish. Jordan spent nearly the whole trip searching for sea life and shells. She wandered up and down the beach for hours at a time. I've never been much of a beach-goer, but I loved being there with the kids! We can't wait to go again next summer!