New baby in the house

We have a new baby in the house. His name is Jasper and he is approximately seven weeks old. We adopted him from the Humane Society. He is full of spunk and mischief, but is also as sweet as can be. The kids are having the best time playing with him. Rob and I were talking about how much he reminds us of Davy, the cat that we used to have. He even looks a lot like Davy. Davy was the first pet that Rob and I got when we got married almost 16 years ago. We have been watching Jasper play and we just can't believe how much his personality is like Davy's personality. One thing that Davy used to do all the time was to steal straws out of drinks that were left sitting out. Rob just couldn't stand it and had to test it to see if Jasper would do it, too. He set a glass out with a straw in it and walked away. Sure enough, within a minute, Jasper spotted the glass and ran over and sniffed it and then stole the straw out of it. Rob and I just stood there and looked at each other. It's like seeing Davy all over again.

Jasper and Holly, our dog, have really warmed up to each other and are playing together. Holly will enjoy having a playmate. Callie, our very old cat, is not so welcoming of the new baby. In fact, Callie pretty much hates Jasper. Callie has decided to stay on one side of the house and will not tolerate having Jasper come near her. Jasper seems to understand Callie just fine and gives her the space she needs and leaves her alone.

I can't believe that it is New Year's Eve already. This year has flown by and we have been through so much as a family. In January we were going through a lot of emotional turmoil. We were facing Emily's upcoming brain surgery, and yet we were being blessed by having Emily's wish granted from Magic Moments. They brought her a playhouse for our back yard and had it delivered before she went in for surgery. February was the surgery and it ended up being two different surgeries. The recovery was hard, but thankfully it was quick and the surgery was a success. Springtime also brought another hospital stay for our family as Ethan was once again very sick with another bout of pneumonia. He spent several days in the hospital on oxygen. It was after that that we saw a new pulmonologist and realized just how bad Ethan's lungs really are. May was another emotional time because the kids were graduating preschool. I couldn't believe that my babies were actually old enough to be going to big school. We also got the chance to go to Magic Moments Family Camp for the first time. That was an amazing experience. In June Ethan was back in the hospital because he had his tonsils and adenoids out. What should have been a simple procedure was a bit more complicated because of his lungs. Ethan had to stay the night in the hospital on oxygen. Ethan's recovery from his surgery was very long and very hard. The rest of the summer was spent enjoying time on the boat and doing things together as a family. Before we knew it, Kindergarten started. I actually had school age kids. How did that happen? What happened to those tiny preemies? I can see so many changes in them since they started school. They have matured so much in just a few short months. Ethan and Emily turned six years old in October. Where have the years gone? Fall was filled with fun times at school and at home. Thanksgiving was spent with Rob's family. We were blessed again by Magic Moments when they granted Ethan a wish and they sent us to Disney World. Despite Ethan getting a stomach bug, the trip was wonderful and created lots of wonderful memories. And of course we all know about my quest to keep Ethan out of the hospital at Christmas last week. What a way to end the year. Ethan has recovered now, and we are ready to watch the ball drop and are ready to ring in the new year. We are hoping that 2009 brings nothing but health and happiness for our family.

Commercial Addicts

Ethan and Emily are a couple of commercial addicts. They need some kind of serious support group and thank goodness they don't give credit cards to kids their age or there is no telling what all they'd end up ordering from commercials and infomercials.



We were playing another game of Clue Jr. this evening (probably our 1,000th time to play since Christmas Day) and the kids both suddenly stopped me in mid-roll of the die. I didn't know what was happening, but they were both going crazy for me to turn around and look at the tv. All it was was a commercial for a purse, or so I thought. The kids started saying things like "you've got to watch this" and "look what all this thing will hold". When I said something about it being a purse, I was quickly corrected. It isn't a purse. It is a Buxton Bag and it is only $19.95. I just sat there looking at these two six year old strangers in my living room. Do they really watch this much tv that they know and can recite these commercials to me? Emily even went so far as to tell me that my regular purse can be stolen from a restaurant, but if I had a Buxton Bag, it wouldn't get stolen because I could just wear it over my shoulder at all times. I couldn't believe how excited they were getting about this darn purse thing.



It was only about 30 minutes later that Ethan came running in and told me that I just HAVE to get a Snuggie Blanket. He was giving me his sales pitch and reciting lines from the commercial like "the next time I am at a sporting event, I can stay nice and warm in a Snuggie." I just looked at him and busted out laughing. He got all serious and said that there really is a thing called a Snuggie and that he just bets that I'd like it.



Listening to the kids talk about their commercial tonight reminded me about a conversation that I overheard between the two of them the other day. They saw an ad for something that was their age, but at the end of the commercial there was the disclaimer that said you must be 18 or older to order. I overheard the kids discussing with each other how they think that it is so unfair that everything has to be 18 or older to order anything. I chuckled to myself and then walked in and explained that they say that because you have to be that old to have a credit card and you can't order anything without a credit card. Thank goodness they don't have a credit card or they'd be buying everything they saw on tv!

GOOD NEWS!

ETHAN'S SATS WERE 95 THIS MORNING!!!

Just a quick update

Ethan is way better today. He is really coughing more which tells me that the stuff in his chest is starting to break up, and that stuff sounds thick and nasty, too. His sats are all over the place. One minute he'll be 91-92 and then an hour later he has dropped back down to 87-88. The only thing I can think is that it all depends on if he has recently coughed some stuff up or not and maybe that is making the fluctuation. I never did get a call back from the doctor and can only assume that their office must have been closed today and they didn't switch over their phones. It makes me mad, but what can I do?!?! Ethan is improving anyway. My biggest concern is that he is still dropping down in the 80's. This means that he has had four days now of oxygen levels down in the 80's. That concerns me.

The biggest change in Ethan today is his attitude and his appetite. This is another reason how I know that he is getting better. This must mean that the meds are starting to work on him. The medications are turning him into a monster. He is on fairly high dose of steroids right now (1mg Pulmicort twice a day and 1.5 tsp Orapred twice a day) plus the two different antibiotics. I know the attitude change is from the steroids. Ethan is just out of control and also having these emotional outbursts. Even though I know it is from the meds, it is really hard to handle.

I have had several people ask me about the oxygen level and what it all means so I will do a quick explanation. The sat monitor is actually a pulse oximeter. It measures the oxygenated blood. That number should be at 100% or very close to it. Our pediatrician typically hospitalizes children if their number drops below 92%, but for Ethan he usually waits until it is lower than 90% because of Ethan's lung issues. Ethan typically has lower numbers. Every time Ethan has been in the hospital, they won't release him to come home until he can maintain a level of 92% or higher on room air. The fact that Ethan is still dropping down in the 80's is not good, but he is improving. I hope that helps explain things.

It's like a roller coaster ride!

Ethan's oxygen level dropped again last night to around 84-85. I did another nightly round of breathing treatments and back beatings to get him to cough. I was extremely relieved this morning when I checked him and I actually saw that he was 92!!! I thought that we were finally past the worst of it and on the mend. I was just starting to relax and think that he was going to be okay. And then a little while later I looked over at him sitting on the couch and his cheeks were red. I could tell that he was breathing a little quicker and more shallow and so I grabbed the sat monitor again. His oxygen has dropped back down to 88. I am waiting for the doctor to call me back. I called their office to let them know that although he is improving, his sats are still dipping down into the 80's. We'll see what happens. I'll update when I hear something back from them.

A Christmas Miracle

Is it another Christmas miracle???? That is what I am thinking Ethan's sudden improvement is. Last night we attempted to go to the Christmas Eve service at church. During the service, Ethan really started to struggle. His breathing was becoming more labored and shallow and we had to leave to get him home to get a breathing treatment. His sats were still in the mid 80's range. Things were still just not improving and I felt like we had no choice but to take him on to the hospital. I had spent the past two days stressed out beyond belief, in constant tears, and so frustrated and scared because it seems like Ethan is always having to struggle to breathe. I know that under normal circumstances our pediatrician would have put Ethan in the hospital, and I know that the only reason why he didn't is because of Christmas and that he knows that we aren't new to this and that we have all of the equipment at home to handle it with the exception of oxygen. Although Ethan's sats have been low, his color has remained good, and he hasn't struggled enough to cause retracting while breathing. Had either of those things happened, we would have been in the hospital immediately. I have to say, though, last night I thought we were at that point. When we came home from church, I told Rob that I didn't know if he'd make it until morning without us taking him in. And I thought for sure that we'd be taking him in as soon as presents were opened this morning.

Needless to say, that didn't happen. I continued to give Ethan breathing treatments through the night and by morning his sats were actually up. They were still in the 80's , but they were at 88 and 89!!!!!! And a couple times today they even got up to 90! I think the worst is over!

Now for talk of our Christmas celebration. Every year on Christmas Eve we take a family photo in front of our tree. This is our picture this year. It's the best we can do considering I haven't slept in two nights and have been stressed to the max and of course Ethan was feeling horrible.

Last night before bed we sprinkled the reindeer food in the yard that they brought home from school and set out the Santa keys, one by the front door and one by the back door. The kids set out milk and cookies for Santa and then went to bed. They decided to have a sleepover in Ethan's room. It has become a ritual every Christmas to have a sleepover in one of their bedrooms on Christmas Eve so they can both wake up together. They have always done this. I got smart this year, though. I took my clock off of my nightstand and put it in the bedroom with them. I told them that they were not allowed to come out of the room before 6am and they had a clock with them to check the time so there were no excuses. I had also set back up the old baby monitor in the room since Ethan had been sick so I could listen to him breathe so I was able to listen to them talk in the morning, too. It was so cute when they woke up and started talking about how they wondered if Santa had come yet. They got so excited to see the presents and of course we had a very busy morning. Ethan loved the workbench that Rob made for him and Emily could not believe that Santa got her the exact guitar that she had asked for. That was VERY cute to see how excited she got. Ethan loved his Moon Shoes from Santa and wore them around the house half the day. We cracked up watching him walk around the house in those things.

Here is a video clip of Emily rockin out to her Hannah Montana guitar while she is dressed in her Hannah Montana costume. Too bad we have to hear Ethan and Rob in the background. :)

Our Christmas turned out to be a good one today. I really believed we'd be spending it in the hospital, but it looks like we narrowly avoided it this time. Christmas has now come and gone and we can look forward to the new year.

He's so very sick!

It's bad! Very bad! Ethan probably should have been in the hospital last night. His sats dropped down to the very low 80's and stayed there. I sat with him during the night and would wake him up to sit up, I would pat his back and make him cough, and it would help improve his oxygen just a little bit. It was a very long night. I was right on the point of breaking all night because these poor kids have just been through enough. They don't need their Christmas ruined by Ethan being in the hospital!!!! I was running it all through my mind on how we would handle it all and still try to make it work and be special.

It is now 8am and his sats are around 86 and 87. He is on Orapred, two antibiotics, Pulmicort and Xopenex (via nebulizer), and Motrin and Tylenol for the fever. We are praying that he turns the corner very soon. We will be just taking it hour by hour and will go to the hospital if he really starts struggling (like retracting when trying to breathe) or if his fever spikes or if he becomes lethargic. The thing with Ethan is that even when he is sick like this, he is still up and playing and moving around, he just has to stop to catch his breath pretty often.

Ethan knows how sick he is and how close he is to going to the hospital. I told him that we are doing everything we can to just get through tonight, but he understands that we might have to go and that if we do then we will just celebrate Christmas a different way.

Trying to stay out of the hospital!

Well, Ethan is sick. And I mean VERY sick. It came on quite suddenly. He started getting a little cough yesterday, but really had no other symptms. By last night his cough was getting pretty bad and his oxygen levels were starting to drop. They were dipping into the 80's during the night and he was really having a difficult night sleeping. I could tell by early this morning that we would soon be in the hospital if we didn't try to head this one off quickly. I called the pediatrician first thing this morning, but the soonest they could see us was 2:50 this afternoon. I didn't think it was a problem since it was still today. As the day progressed, Ethan rapidly went downhill and began running a fever, became very clingy and more lethargic, his breathing became shallow and rapid, and his heartrate increased. His oxygen sats were still in the 90's, but barely, so I still had hope that we could avoid the hospital. In the doctor's office he was like a limp rag on the exam table and our pediatrician did a flu test on his immediately. Thankfully that came back negative. He had to do two different breathing treatments in the office to try to bring his sats up and they never got above 91. He gave him some Orapred while we were there to get him started on it right away. He said that the only thing keeping Ethan out of the hospital right now is the fact that we have been through this with him so many times before, we have the sat monitor at home to watch him, and we have the nebulizer at home with all of the meds. The only thing we don't have at home is oxygen. He is treating Ethan for bacterial and viral pneumonia. He said that if Ethan's sats drop below 88, then we need to head to the hospital. I asked if that was 88 while he was awake or asleep because it always drops lower while he is sleeping. He said 88 PERIOD! So we need lots of prayers that these meds start doing their job and knocking out whatever nasty thing has taken up residence in Ethan's little lungs. He does not need to be in the hospital for Christmas!!!!!!!!

Jingle Bells

This morning, as I am trying to stitch up a hole in Emily's pants, I overhear her telling her brother..."Hey Ethan, let's go sing Jingle Bells over and over again to Mommy. She hates that." Now tell me, what did I ever do to that child to deserve that kind of treatment???? So, in my infinite wisdom to try to diffuse the Jingle Bell Hell that I knew was coming, I told her that I didn't hate the song. In fact, I liked the song. Ethan said, "Well, you must just hate it if we sing it all summer long." Okay, I admit that it does start to get to me during June, July and August. I guess they just wanted to make sure that that was in fact the case because they both came in serenading me with "Dashing through the snow..." I just sat quietly and continued to sew and tried not to outwardly cringe.

A short time later we were in the kitchen finishing up breakfast. Ethan announced that there were only three more days left until Christmas. I said, "Yea!!!!!!! Only three more days!!!!!" Under her breath, Emily said, "Mommy is probably just saying that because she wants it to be over." I told her that that was not true. I told her how much I loved the Christmas holidays. I love all of the pretty decorations, and the Christmas carols, and the holiday movies. I told her that even before they were born I used to get so excited every year for Christmas because I just love the holiday. Ethan said that he loves the holiday, too, because we get to spend time together as a family. I asked Emily why she loved Christmas. I sat there inwardly cringing just waiting for her answer. Before she could answer, this was the conversation we had...

I said: You better not say it is because of the presents.

Emily: Well it IS because of the presents.

Me: Emily Lynn! Christmas is NOT about getting presents.

Emily: Did you hear me say it was about GETTING presents? It is about giving presents because every time we give somebody a present it is like giving Jesus a present for his birthday.

And then my beautiful child sat there with a smug smile on her face. This girl is really going to be the end of me. You see, this was a conversation that we had a few weeks ago about Christmas and the meaning of Christmas. We talked about how it was about celebrating the birth of Jesus and how we give presents to each other as a symbol of His birthday celebration. We talked about how much more important it was to give the present than it was to receive the present. And even though my lovely daughter just gave me this wonderful answer about the reason she likes Christmas so much, if I could have captured the smug look on her face during the delivery of her answer, I think a look is worth a thousand words.

Is it too early to start hitting the Egg Nog this morning????

Not the real Santa!

Emily told me yesterday that the Santa that came to their school for the Breakfast with Santa wasn't really Santa. I asked her how she knew that and she told me it was because he had a Volunteer Pass sticker on his Santa suit. You see, when you enter the school for any reason, you have to check into the office and either get a Volunteer Pass or a Visitor Pass. She said that since Santa had a Volunteer Pass on then that meant that he couldn't have been the real Santa because it was just somebody helping out at the school. That girl just about blows me away with her logic. So, maybe I need to put a bug in Santa's ear for future reference to get a yellow Visitor Pass the next time he is there visiting and not a blue Volunteer Pass. I told her that maybe he was one of Santa's helpers that was there working for Santa and that he was going to pass the information along to him. She said, "I don't think so. And besides, he didn't ask us what we want anyway." She has really been struggling this year with whether or not to believe in Santa Claus. She has moments where she is really skeptical and then other times where she is totally drawn into the magic of it all. Today was one of those times because of their teacher.

The kids came home from school so excited. They had these huge bags full of goodies. They couldn't wait to get home to open them and show me everything. There were two things that they each had in their bags that they were really excited about. One was the special key for Santa. It was a real key that had glitter all on it to make it sparkle and it can be left out for Santa to be able to use to get in our house on Christmas Eve. And the other thing that the kids thought was really cool was the bag of reindeer oats to sprinkle out in the yard to attract the reindeer to our house. So, this got Emily thinking that maybe there really might be a Santa Claus after all with this special key and the reindeer food. Thanks, Mrs. McFarland, for adding to the magic this year. Emily needed it.

And I also think I need to say another big thank you to Mrs. McFarland for the amazing keepsakes that the kids made and surprised me with. There were those adorable ice cream cone Christmas trees, the Angel magnets, the hand print ornaments, the little wreaths, all of the fun goodies for the kids, and the best gift of all...those amazing calendars!!!!! Even though the kids were supposed to put those gifts under the tree, Emily just couldn't stand it. She wanted me to open the present the second we got home. I opened it up and wasn't prepared for the onslaught of tears that came pouring out. That was probably the best gift that I could have ever received this Christmas. I got two calendars, one is from Ethan and one from Emily. Their picture is on the front and it says "My Hand Made Calendar". For each month in the year, there is a piece of artwork that the kids have done that pertains to that month/season. Several of the pieces of artwork use their hand prints in some way or another. This was a truly thoughtful and cherished gift that is very much appreciated. Thank you so much, Mrs. McFarland, for everything you do.

Go sleep on the couch!

So, I was having a conversation with my darling daughter this evening and was reminding her about how nice it would be if she could earn some computer time like her brother by staying in her bed all night. Ethan has stayed in his bed all night the past two nights (only because he is scared to death of the cat crawling on him, but hey, whatever works). I asked Emily why she has been sneaking in my bed each night. I asked her if she was sick - she wasn't. I asked her if she had a nightmare - she did not. I asked her why she came into my room then, and she told me it was because my bed was so comfortable. I told her to stop doing it because I can't sleep well when she is in my bed. In her most serious voice ever, she said, "Well, can't you just move to the couch then!" I was stunned speechless for a brief moment that my six year old child just told me to move to the couch so she can now take over my bed. After a second to get over my initial shock, I simply told her that my solution is to lock my bedroom door so she can't sneak into my room anymore and she can go to the couch if she doesn't want her bed anymore.

I got a call this morning from Dr. Canady, Emily's neurosurgeon. I had called her to let her know about Emily's headache episodes after we arrived in Orlando. I kind of feel a little bit frustrated. For anybody who has witnessed Emily's headache episodes, you will know and understand what I am talking about when I explain them. These things are very distinct and it would be almost impossible to confuse them with any other kind of illness because of the characteristics and how they manifest from start to finish. When I explained to the neurosurgeon about Emily's symptoms after the flight, she said that it would be in our best interest to have her checked out by our pediatrician for sinus problems, maybe have her sinuses x-rayed. She said that it sounds like Emily's symptoms were from some kind of internal sinus problems. Now, while I do admit that Emily has always needed allergy medicine for seasonal allergy stuff, and I know that flying can cause problems because of the ears popping/not popping, etc, and it can be related to sinus issues, what she had happen to her on those episodes were not sinus related. It was the exact same thing we went through over and over again for almost three years before she had her brain decompression and shunt surgery this past February. All I can say is that she is fine now. We just seem to always be waiting for the next time that her shunt will break and she'll need another brain surgery.

Here is a picture of Emily when she was in the middle of one of her headache episodes while we were at Disney's Hollywood Studio.

This is Emily about 30 minutes after the end of the headache episode. She just finished riding Tower of Terror and is now eating an ice cream.

On a positive note, there is something that I totally forgot to mention about Ethan. In all of our excitement before we left for our trip, it just got left out. Ethan won a drawing contest and had his name announced during the morning announcements at school. The contest was held at Chick Fil A for one of their school spirit nights and the children had to draw the Chick Fil A cow dressed in a police hat. Ethan won the contest for the best drawing of all the Kindergartners. He was so excited when he came out of school that day and told me and I was so proud of him. We still have to go collect his prize at Chick Fil A.

Today was a fun day at school. The kids got to have breakfast with Santa, and later had a gift exchange. For the gift exchange, they each brought a wrapped candy bar and they got to draw numbers and get to get a candy bar as their gift. I think that is a great idea. The kids all love candy bars and it means that the parents don't have to spend a lot of money on exchange gifts. What a genius idea!!! I can't believe that it is only a week until Christmas. I need more time.

Was it all just a dream???

We made it home safe and sound on Saturday. It was nice to get home and sleep in our own bed again. I would have said BEDS (as in plural), but Ethan and Emily have managed to sneak their way into our bed each night since we've been home so they don't really know what it's like to sleep in their bed yet. Callie and Holly (our cat and dog) were sure happy to see us, too.

I can't believe that our week is over already. There was so much anticipation leading up to it and now it is over. I was sad for Ethan that he got so sick and didn't get to fully enjoy everything he could have, but despite it all, it was still a very magical time. The most important thing is that we created lasting memories for our family that will stay with us forever.

Now it is time to get back to the real world of work and school. Ethan is still not feeling quite like himself and I'm wondering if I need to take him to the doctor. His stomach is still not right and he isn't really eating like he should. He also gets really tired during the day and needs to lay down. His stomach cramps at times and then it gets better. It will be one week tomorrow since he got sick and if he is still not feeling well today then I'm calling our pediatrician.

We survived the week

I know I should have posted an update sooner, but we have just been busy. Ethan was just so very sick. We ended up getting our pediatrician's office from home to call us in some Phenergan suppositories for him to a 24-hour Walgreens here in Orlando. We gave him the medicine around 11 pm and Ethan didn't quit throwing up until after 2 am. He vomited every 30 - 40 minutes for a solid 12 hours. I sat up with him all night and fed him Gatorade through a medicine syringe. He was finally able to start keeping stuff down around 3am. When he woke up at 6am the next morning, he came in and got me up and in a very chipper voice said, "Hi Mama." I asked him how he felt and he told me that he actually felt normal. I couldn't believe that he was even sitting upright after throwing up so bad the day before, but he was up and feeling okay. At least he appeared okay for the moment.

Our original plans for that day were to go to Magic Kingdom, but since Ethan was so sick, we thought that it would be best to stay in and just rest. That would mean going to Magic Kingdom the next day and just skipping Universal Studios altogether. There was no way we would skip going to Magic Kingdom if we could help it. As we were getting ready that morning and watching the news, we saw that the weather was calling for very severe weather for the next day. And I mean severe. Rob and I looked at each other and then looked at Ethan sitting there on the floor playing a game with Emily. We decided that our only chance of going to Magic Kingdom was going that day. We told Ethan that we'd walk down to breakfast and see how he did. If he felt okay, then we'd head to MK and just do what we could. If we didn't at least try, then the tickets would be wasted anyway due to severe weather.

Ethan was a little green around the gills at the beginning of our Magic Kingdom adventure, but by late morning, he was doing good. By the end of the day he was doing great! We ended up riding almost every ride there. Not bad for somebody who was almost taken to the hospital the night before for IV fluids.

Today is the day that those storms hit. They were pretty bad. Lots of rain. We stayed at the Village and hung out in the gameroom at Amberville and in the Castle of Miracles. The rain cleared out by this afternoon and we were so glad, too, because tonight was the big Christmas Party. Ethan and Emily were chosen to be in the parade and they thought that was so cool. Also, they saw some of the Disney characters that came out for the festivities, we rode in a horse drawn carriage, and they saw Santa Claus. They also each received a present from Santa Claus. It was a very fun evening.

It is time for us to head home tomorrow. We are driving instead of flying. Magic Moments has gotten us a rental car. We will be stopping along the way since we aren't leaving until the afternoon and we'll get in on Saturday. It has been a fun, but tiring week, and I am ready to get home.

There are a couple of things that I want to mention that I forgot to mention in earlier updates. At Sea World, when we were watching the Believe show with Shamu, Ethan was really intently studying the tank that the whales are in. He looked at me during the middle of the show and asked, "Mommy, how did they get those whales? Did somebody have to catch them?" And then he wanted to know why in the world anybody would think it was better to take them out of the ocean if the ocean is where their home is. I just looked at my son and thought he had a very good point and then I felt very guilty for even sitting there watching a whale show.

Something interesting about Emily. She told me that she has noticed that when she walks and when she stands, she puts more weight on her left leg and foot than she does her right. She told me that it makes her legs get really tired and she wanted to know why her right leg and foot doesn't stand the same as her left one.

And I have decided that Emily will probably grow up and become president of PETA one day. She can't stand to see animals caged up or contained in any way. When we first got to Magic Kingdom, Emily about had a fit because they had a horse attached to a street car and it was just standing there. She said that it was mean to make it just stand there like that. She even got upset when she saw one of the mechanical donkeys on the Pirates of the Carribean ride. She got all worked up and said that farm animals are not supposed to be locked up. They are supposed to be on a farm where they can be set free to roam around and graze. And then she got upset again tonight with the horse drawn carriage ride tonight at the Christmas party. She said that she didn't think they liked having all of that stuff strapped to them and that they really didn't like pulling around a big wagon. Like I said, she is a future PETA member.

Well...

I seem to be a day behind on posting updates, and so this would have been an update from our day yesterday. However, considering things haven't been going so well, I guess I can bring things up to date.

Yesterday morning we had planned on going to Disney's Hollywood Studios (MGM) first thing. The kids had other plans. They love the Village so much that they didn't even want to go to the Parks. Since we have been to the Disney Parks before, we decided to just enjoy the Village in the morning. The kids had a blast running around and playing with all of the great things here. And yesterday morning the Disney Characters came here for Meet and Greet and it was nice not having to fight the crowds. We ended up not getting to Hollywood Studios until after 2pm. That is when things went downhill for Emily. She had another one of her headache episodes. That had made three of them since arriving here. She also had been complaining of being dizzy on several occasions. The only thing we can attribute it to is the flying since it all started after we got off the airplane. Because of this, we decided that there was just no way that we could fly home on the airplane. We were working on figuring out a way for us to get back home. We couldn't risk putting Emily back on that airplane. The strangest thing with her is after her episodes happen. She gets over them so quickly and is totally fine after that. The headache is gone, she is no longer lethargic, and she is ready to go and play. We, on the other hand, are stressed and still trying to recover from seeing her like that. It is so hard to deal with these things. It's especially hard because we thought that we were past them after her surgery earlier this year.

Today started out great. We had a Meet and Greet with SpongeBob and Patrick here at the Village and then the kids went horseback riding here. After that we got packed up to head to Epcot. The kids were so excited because they just LOVE Epcot. We immediately went in and went into the V.I.P. lounge for wish families at Spaceship Earth and then got in the back entrance on the ride. That ride was a huge hit. After that we headed over to Soarin, another big hit. We did a few more things and went straight to the countries. Emily and I had a goal to eat some desserts from each country. First we had to eat lunch and then we were planning on starting our quest. That is when all heck broke loose. Not long after we ate lunch, and Ethan and Emily sat on Santa's lap, Ethan was suddenly stricken by a horrible stomach bug. He has been violently vomiting all afternoon and all evening. His stomach is just convulsing and the poor thing is so miserable. Between Emily's headaches and Ethan's stomach bug, this dream wish vacation is turning into a tragedy. I am so sad for Ethan that I just want to cry. We have one more day of Disney passes left that we were planning on using for Magic Kingdom tomorrow. I'm so scared to use them tomorrow if Ethan still isn't feeling well. We may wait and use them on Thursday and just pray that this illness is a short one and that none of the rest of us catch it. We also have two days of Universal tickets that may not even get used at all.

We need prayers and positive thoughts that Ethan has a very speedy recovery!

Sea World

Yesterday we went to Sea World. It was the first time for all of us. Even though we did enjoy that park, I'm very glad we went there first. There are a lot of shows there. The kids don't do well with shows. They never really have. They can tolerate a couple and then they are finished. Because of this, they didn't see as much at Sea World as I thought they would have because they just didn't want to sit and wait to watch the shows. They loved the Believe show with Shamu and they really loved feeding the dolphins. That was a wonderful experience. Emily did have a little mishap, though. As she was holding a fish out for the dolphin, a bird swooped down and grabbed it out of her hand and managed to cut her finger with its beak. She was quite upset. The kids also enjoyed riding the kiddie rides at Sea World, but their favorite was the Polar Express ride. That was fantastic. It was a simulator type ride, kind of like Soarin at Epcot, but on a train instead of a hang glider.

After we got home from Sea World, we headed over to eat dinner and then enjoy the activities in the Village. They had a life-size Candy Land game. The kids loved it. Ethan was being chased along the board as he played by a big gingerbread man and it was so cute. Of course, you can't have a party of any kind here at the village without Mayor Clayton and Ms. Merry, those adorable huge bunnies. Once Emily spotted Ms. Merry it was all over. Emily became Ms. Merry's stalker the rest of the evening. We couldn't stay for the whole party because we had scheduled for Mayor Clayton to come and tuck the kids in bed last night. Wow! What an experience that was. How they expect the kids to quietly go to sleep after that is beyond me. :) They loved it!

Give Kids the World Village

We arrived yesterday afternoon at Give Kids the World Village. This entire place was created for families to come to that have children that have been suffering with medical conditions. It is meant to give them a vacation away from the stress and worry of everyday life. Well, I am here to tell you that it is successful. This place is INCREDIBLE!!!!! Even that can't really describe what it is like. Not only is our entire family treated like we are royalty, everything we do and everything we get here while on property is free of charge.

Our Villa is beautiful. It has two bedrooms and two bathrooms, a living room and a full kitchen. It has a laundry area with a full size washer and dryer. It is decorated outside with Christmas lights, it has a front porch with rocking chairs, and even has our name out front on the mailbox.

We spent the afternoon playing all around the village. Ethan loved driving the remote control boats in the pond at Amberville along with seeing the HUGE model train village they have set up. The kids also loved the game room at Amberville. All the air hockey and Chuck E Cheese style games they could stand. We also enjoyed some fun in the Castle of Miracles where there were lots of games and magical surprises around every corner. Also at the Castle of Miracles is a much loved Carousel for all the rides you can stand. And we can't forget the Ice Cream Parlor where you can go at any time of the day and get an ice cream sundae. I think we had a few of those yesterday. But one of the best things ever is the amazing playground. It is a life-size CandyLand game playground with the biggest and most amazing playground equipment I have ever seen. And to top it off, it is handicap accessible to all children.

Each evening there is a special celebration they have going on at the Village. Last night was Mayor Clayton's birthday. Mayor Clayton is a 6-foot bunny rabbit, and the Mayor of The Village. That was one heck of a party they put on for him and I was surprised that the kids were able to stay awake for it despite the fact that the kids had been up since before 4 am that morning. They were working on pure adrenaline.

There was lots of dancing in the streets, and as usual Ethan got his groove on. That boy just feels the beat through his body. Emily had a lot of fun dancing, too, but she was a little shy at first.

Of course, dancing with Mayor Clayton and his wife, Merry, was a lot of fun, too. Emily is totally smitten with Ms. Merry and won't leave that bunny alone. She is like a stalker to that bunny. It is adorable. It is great to see how much they really encourage the kids to keep it up, too. I almost had to pull Emily off of her. And Ethan, my little hugger, would hug anyone and everyone that he even thought was connected to a character.

The day today was spent at Sea World. That entry will have to wait until another time.

The Plane Ride

Our day started at 3:45 am. That is just too darn early, especially since I was up packing still at 11 pm. We got out the door without a minute to spare to get us to the airport in time. About halfway to Pensacola, and without a gas station or anything else around, Ethan starts saying that he needs to throw up. His nerves were doing a number on him. From the excitement of the trip, the anticipation build up of several months, and the nervousness of flying, he didn't have a chance in the world. While Rob was driving down the road, I was scaling the front seats and quickly holding a bag in front of Ethan to catch the vomit so he wouldn't dirty his only pair of clean clothes. I was having visions of us missing our flight because of needing to dig out clean clothes to change him into. Thankfully, we made it to the airport, Ethan survived and we got on the flight.

The first leg of the flight went well and we had no problems at all. We flew to Atlanta first. We were concerned about how Emily would handle the plane ride with her shunt, but her only complaint was being dizzy after landing. On the flight to Orlando she fell asleep and slept through it. Ethan did fine until the descent. He then started screaming about his ears. He really started crying and having difficulty. We gave him gum and tried everything we new to do. Once we landed he was fine again. Emily complained of dizziness again, but didn't seem to be having problems at that point. The dizziness didn't seem to last a long time either. She was fine the rest of the evening, well that was until bedtime. She ended up having one of her headache episodes last night at bedtime and it was the kind with vomiting. It was very quick and then it was over. I don't know if it was from the flight or just from being over tired, but it happened.

When we arrived in Orlando, there was somebody waiting for us with a sign with Ethan's name on it. Ethan was very excited to see that. It was nice to be escorted where we needed to go to get our luggage and rental car. Our Villa at Give Kids the World Village is beautiful and like a house. It is huge.

I will post another update later today to talk about how amazing the Give Kids the World Village is. It deserves a post all on its own. We are heading out to Sea World today and will be very busy and tired. The fun has started!

Disney...Here we come!

Here it is, 10pm, and I am STILL packing. We probably won't even use half of what we are taking. It's just crazy!!!

The kids are so excited and can't wait to fly on the airplane tomorrow. I'm a little nervous about how Emily will handle the pressure changes on the plane with her hydrocephalus since she is sensitive to pressure changes anyway, but we have to just see what happens. Tomorrow will be a big day and I should probably get some sleep since my alarm is set to go off at 3:45am. I wonder how long I'll have until I have a couple of kids crawling in bed with me tonight because they can't sleep...

Pulmonolgy Update

Ethan had to go to the pulmonologist today for a check-up. The appointment should have been made back in October, but things were very hectic back then with other things going on and by the time I called to make the appointment, the soonest they could get us in was in November. And then I had to call to change that appointment because we had to go out of town last week to see Rob's grandparents. Luckily, we were able to get in today, before heading to Disney. Actually, it all worked out better this way. If we had gone back in the early part of October, I would have told Dr. Maupin that Ethan's medicine, the Symbicort inhaler, was doing a fantastic job in controlling his asthma related symptoms. I really thought it was. At least that was until he had that horrible illness at the end of October that really threw him for a loop and almost sent him to the hospital. I explained to the doctor how Ethan had to go on Orapred because his sats were dropping into the 80's and how he has never seemed to fully recover since then. I also explained how the Xopenex inhaler is useless with a illness, and that I really question now whether Ethan is even really proficient enough with the inhaler at all to use it, even with a spacer. We talked some more about Ethan's symptoms and what has been going on since the illness. He is putting Ethan back on another round of Orapred because he thinks that maybe the first one wasn't strong enough to heal his lungs after that illness. Also, he is taking us him of Symbicort and putting him back on Pulmicort, but at a higher dosage. Ethan will take 1 mg of Pulmicort two times a day through a nebulizer. Of course this now means that we will have to pack up the nebulizer and all tubing and meds to take with us to Disney. Dr. Maupin also did some more lung function tests on Ethan today and sent him down for some chest x-rays. One thing that I have to say is that I absolutely LOVE this doctor and this hospital!!



It was a big day for Emily today. She had to go to school all by herself for the first time today. This was a huge milestone!!!! She wasn't worried about it at all or upset at all this morning. As we were driving to school, Ethan said to her, "Don't get upset and cry as you are getting out of the car, Emily." I just quickly tried to change the subject because I didn't want him to make her cry. She was very brave and didn't show any hesitation at all. She got right out and waved to us and walked her way into the building. Ethan, on the other hand, was sitting in the back seat and had his eyes welling up with tears. He told me that he was going to be worried about Emily at school by herself. He kept asking me what time it was and would try to figure out what she would be doing in class right then. He even took her stuffed animal that she left in the car and he buckled it into her booster seat. He would look over at it on our way to the hospital and would get sad and say that seeing Rudy sitting there made him think of Emily. It was really quite pathetic and very sweet all at the same time. He ended up surviving the day and so did she. Emily did tell me that she got sad and started to cry a couple of times during the day, but that most of the day was a good day.



We only have one more full day until we leave for our trip. Rob and I have been packing like crazy tonight. We haven't flown on a plane since the Sept 11 terrorist attacks and so all of this new security stuff will be new to us. I'm not really sure what all to expect. I'm sure we'll be that crazy family with kids that holds up the line that everybody behind us just hates to see coming. ;)

The countdown is on...

We only have a couple more days until we leave for our Disney trip. We are all so excited!!! The suitcases are ready to be packed and I am working on getting the laundry done. Our flight leaves Pensacola at 6:50am on Saturday morning and so we will have to be up early. The kids and I already decided that we just probably won't even sleep the night before because we'll be just so excited. I got a phone call from somebody at Give Kids the World Village a couple days ago and they were confirming everything and they said that somebody would be waiting for us in Orlando with Ethan's name on a sign as we got off the plane to greet us. They will lead us to the rental car agency and make sure to get us where we need to go. To put it in simple terms, we will be pampered while there and treated like royalty.



Tomorrow I am taking Ethan to the pulmonologist to get his lungs checked out before we leave. He really has had a hard time after his last illness and I just want to make sure that everything is okay before we leave on this trip. One thing I learned is that he can't take his Xopenex in inhaler form when he is sick. We will have to go back to using the nebulizer for his Xopenex medicine. I'm wondering about his Symbicort because of this, too. We'll see what his doctor says tomorrow.



Emily must be going through a growth spurt right now. She is really struggling with falling down a lot lately. I'm finding that I'm having to hold her hand a lot more when walking. I went in today to mention it to her teacher because I felt like I needed to warn them to be on the lookout for her to start having some accidents. I am especially worried about the lunchroom and her carrying her tray. I was talking to Sunny this morning (one of the substitute teachers) who was helping out Ethan and Emily's teacher and I was telling her about it and she told me that Emily did have an accident yesterday on the swing on the playground. She said that Emily just fell out of the swing for no reason. Emily did tell me today that somebody carried her lunch tray for her today. This growth spurt couldn't come at a worse time with the amount of walking that we will be doing in Orlando.



Emily did something exciting at school today. She took her first AR test!!!! Actually, she took two of them. Each book she tested on was worth .5 points, so she currently has 1 AR point. Also, she needs to choose books up to a level of 1.8-2.8 (blue books). That means that her reading level is a minimum of 8 months into the 1st grade year to 8 months into the 2nd grade year. Or, in easier terms, almost the end of a second grade reading level. Now, this level was determined according the Star Assessment test she took and I know that it wasn't totally accurate because I sat with her while she took it. She didn't pay attention during half the test and it wasn't until I told her that she better start paying attention and doing the test otherwise the teachers would think she was still reading on a Kindergarten level. That was when she jumped up and started paying attention. Getting this Accelerated Reading program off the ground has been a huge thorn in my side. Well, not only my side, but also our teacher's side, too. The person that was in charge of doing it for the kindergartners was pulled to help out the second graders and that meant that they had nobody available for the kindergartners. And I really don't think they had any intentions of doing anything about getting anybody for them either. I will hold back my opinions right now on why I think this is all going on, but it is. I have stepped up and volunteered for all of the kindergarten classes to handle the AR program. I will be working with the children and helping them earn their AR points. Of course, it helps out Ethan and Emily, too.