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.