Merry Christmas to All!!!

We had a great Christmas with family, and the kids had a blast with all their new toys. I worked 5AM-5:30PM Christmas Eve, so by the time I got off, I was wiped out. I knew it was going to be a battle to get them all in bed so Santa could come, then be back up at the crack of dawn to get gifts open and get to my mom's by lunch, so we opted to have Santa come before I went to pick up the kids Christmas Eve. They weren't expecting that at all, so it worked out really well.

I came home and dealt with Santa right after work, then went and picked them up about 7. We drove out to Charlestown, IN to see their Christmas display (yes, in the snow).







We then came home to discover that Santa had gotten there early. Wow, were they ever surprised!














We opened gifts Christmas Eve, then were able to sleep a little longer Christmas morning before going and starting it all again.

We have a lot to be thankful for this Christmas. The biggest thing being that we've had no hospitalizations (knock on wood) this entire year for the first time since Emily was born in 2005. That is huge for us!

Hope everyone had a wonderful Christmas, and we wish you the happiest of New Years! I'll leave you with Emily's ear splitting performance. She says it all!

When You're a Celebrity

Emily had her school Christmas party last week. All the Head Starts in the area met at the Moose for a lunch with Santa, and they performed their Christmas songs all together there. It was a really good turnout, and the place was packed! Thankfully, as I was coming from work so showed up very last minute, my mom showed up early to help set things up, and in the process, she landed us a table right in the front row. Couldn't have worked out any better for us!

Emily was soooo excited about the whole thing! Every little bit, she'd think it was time to go sing, and she'd make a run for the stage (and I do mean RUN)! No stage fright there! LOL! The singing itself was very short and sweet, and then it was time for lunch and then the long awaited meeting with Santa.

Does Emily believe in Santa Claus? Oh yeah! She could hardly contain her excitement in line and could not wait to get on his lap for her picture. Of course, it was supposed to be a quick picture for the school, but Emily was sure to place her "order" as well. :-) She quickly smiled one goofy grin for the camera, then turned around and started in on him. It was all just too cute, and the newspaper was there and started taking pics.

After they managed to get Emily off Santa's lap, the newspaper man chased her down and asked her what she had been discussing with Santa, her name, and her age. I kind of wondered if she'd make the paper, but of course out of the hundreds of kids there, what were the odds they'd go with that picture? Well, of course, this is Emily we are talking about, so I should have known! Emily made the big picture right on the front page! She was soooo excited, and everyone has been teasing her about being a "celebrity." I hope this link works.

http://madisoncourier.com/main.asp?SectionID=178&SubSectionID=961&ArticleID=60017&TM=38140.95

In other news, we seem to have a tummy bug floating around the house and a nasty cold as well. I've been sick for over 3 weeks now with sore throat and sinus stuff and am hoping I'll get over this soon. Ashton had a really bad asthma attack last week, and I almost had to call 911 for him at 4:30 AM the other day. His airways got so tight, he couldn't even get out the word "help," but he came out of it with 6 puffs of his albuterol inhaler, a neb, and a dose of steroids. That's the good thing about Ashton, he comes out of it quickly. Emily and Braylon have the cold as well, and we've been doing Albuterol nebs on them all week, and Emily has needed extra oxygen. They are still wheezing, but they are holding their own. Nothing a doctor would do any different right now anyway unless we wanted to do steroids, and I don't think we are to that point yet.

Christmas is approaching quickly, and I think we are getting a tree today. We've never been able to do a real tree since the kids have been born, but we are feeling brave this year. Denny was up all night doing homework and is sleeping now, but when he wakes up, he promised to take the boys to cut down a tree. This should be interesting. :-)

Kids are getting ready now, even vaccuuming for me in anticipation of making everything Christmas perfect! They are too sweet!

November 21, 2010

I came to the realization today that Emily measures time by number of days with Mommy, meaning my days off work. Wow, that really makes me feel like a heel! I hate leaving the kids anyway, but to hear her tell Ryan, "You need to get ready for school. This is the last day with Mommy, and that means you have school." Well, it's actually not my last day before going back to work, and the boys obviously don't have school on a Sunday. I have one more day off this week, but she was certain that she had counted right. Her whole plans for the day had revolved around this being "Mommy's last day" which to her meant my day with just her and Braylon.

Instead, Emily, Ryan, and I went downstairs before the others got up to make cinnamon rolls. Ryan and Emily took Daddy breakfast in bed, and the other boys got to enjoy theirs when they got up. Very sweet morning with my middle two kids. And very yummy cinnamon rolls too. Just what my diet was missing, right??? LOL.

We've all been passing a nasty bug around the last couple weeks. First was Ryan sick for 2 days, then Ashton for 2 days, then Ryan for 2 more. Then we had a couple good days and then Denny got a fever and sore throat for 2 days. Several days later, Braylon came down with a fever but no other symptom. He ran 103+ for 2 days, then got okay. I wasnt' so lucky. Wednesday at work, my throat started hurting. By Thursday night, I was running a fever and was barely strong enough to drive myself home. By Friday morning, I had nasty blisters in my throat, could barely breathe, and could do little more than sleep. Fast forward to Sunday....I'm finally awake! Throat still killing me, but I finally feel like I'm joining the real world.

Only one who hasn't gotten it yet is Emily. Well of course she went to bed early last night claiming she wasn't feeling well and then woke up this morning coughing her little head off. I hope this isn't a sign of what's to come! Keeping my fingers crossed! She can't afford another lung infection.

The pictures below are of Braylon and Ryan taken last night after Emily was in bed. Braylon won these little tops from the school fair a few days ago, and he stood on a kitchen chair for hours last night trying to spin them. He likes them so much, he even slept with them! So cute! And then the other picture is of Ryan and our cat Miss Oreo. Ryan and his cat are nearly inseparable, but this might just be taking devotion to a whole new level!

Results

Emily had an appointment in Louisville yesterday to get her recent test results. All in all, a really good appointment!

HRCT scan showed the usual chronic changes but overall some improvement from the last one done a year ago. Sleep study didn't show much of anything which is also good...no obstruction, no CO2 retention, pretty good oxygen levels. And last but not least, Emily's PFT's were also up! So it really looks like things are continuing to improve, albeit very slowly. It's been 5 years now since we brought home our little tachypneic bundle of oxygen tubes and cords, and at that time, we had hoped she might be weaned off oxygen within 6 months. And here we are, 5 years later....

Her doctor stressed that he does not yet feel Emily is ready to wean the nighttime oxygen, even though everything else is improving. As we're the ones who live with Emily, I can honestly say this is a good thing as well. While I'd love if we could get rid of it once and for all, I don't want her weaned until she is absolutely ready. Emily still has the shortness of breath, and when she's been off oxygen too long, she still gets very breathless and tearful. And if anyone has doubts, I challenge you to spend 72 hours with Emily without oxygen! She does still need it despite what tests might show, and she will let you know in a very loud, ear-splitting kind of way! And combined with her history and the fact that she is actually improving now, it just doesn't make sense to rock the boat. We are continuing things as is for now. Advair inhaler 2puffs twice daily, Singulair 5 mg at bedtime, and 0.5 liters oxygen at bedtime or when she otherwise needs it. Compared to the huge list of very harsh drugs she was on as a younger child, we've come so far!!!

On a very bright note, I want to offer my hugest thanks to Emily's pulmonologist for actually hearing what we say! That is so huge, especially as we've had issues in the past with other doctors not hearing our concerns and refusing to see Emily as Emily, and instead only seeing the figures and numbers instead. Yesterday, Emily's doctor had another doctor following him, and that doctor did not relate to us very well. He kept asking the same questions over and over like he was reading them from a script, and he just couldn't fathom why Emily was still on oxygen and why we say she gets so short of breath when she looked so normal sitting there on the exam table. When Emily's doctor came in, he attempted to put into words Emily off oxygen versus Emily on oxygen. God love that man! He's never had to listen to her wailing at the top of her lungs for oxygen, and he's never seen her first hand puking in her bed and crying herself to sleep because her belly hurts so bad from essentially no stomach motility. He's never seen her lying on the ground crying at cheerleading because it is too hard to breathe and cheer at the same time when it is hot outside! He's never seen her try so hard to do things other kids do with ease, just to have some sort of normalcy. He has never lived with the real life Emily, but still he can look past the numbers and the figures and the test results and see Emily for who she is, a kid who uses oxygen to help her make the most of her life. I think he really GETS IT, and I REALLY appreciate that!

Trick or Treat!!!

Had a fabulous night trick or treating! Lots of pics!

It was a beautiful evening for it, and Emily did very well! We were able to walk for almost 2 hours (at a slow pace, of course), and I only had to carry Emily a little while toward the end. Braylon also walked this year and was so cute as he was really just learning what he is supposed to do. The first house, he didn't want to go to the door, but once he did and he got 2 miniature candy bars in his bucket, he grinned really big and turned around and ran towards our house. He was ready to eat it right away! When he realized he got candy at every house, he really got into it. I tried to teach him to say trick or treat and then thank you, but most of the time he would wait until he was walking away to say trick or treat. Emily, Ryan, and Braylon also had to stop to pet every single animal they saw along the way. Oh, and they also chased a poor squirrel up a tree. They really had a blast though!

And a huge thanks to the Winters for coming along and making Ryan's night!

Emily's quote of the evening, "Bray-man, I have a really good plan. When we get home, we're going to eat candy until we fall asleep." Braylon was in complete agreement, of course!

And now for the pictures:

This first one is of the 4 kids together in their costumes. Braylon is Woody, Ashton is Peyton Manning, Emily is a princess, Emily's doll Emma is a fairy, and in the back, Ryan is a very enthusiastic cowboy!


Love the expression on Ryan's face!


My sweet little Braylon Case


Ashton, Logan, and a friend as Colts players.


Braylon and Emily


Love this one of Braylon!


Braylon and Mommy


Braylon and Mommy without the glasses


Emily and Mommy


Ryan and Braylon


Braylon with Ryan's drink. Shhhhhh....Wow, this stuff is good!


Ashton and Emily resting on a bench.


Cousin Eli, his friend, and Denny...2 nerd costumes and one natural!


Happy Halloween!!!!

Testing

Emily had her sleep study and chest HRCT last night/today. Sleep study was added on a little last minute, and it was a scramble to get the boys' homework finished, get packed, drop Braylon off with my mom, get Emily supper, and make it to Louisville by 7. I found out about the test at around 3 in the afternoon and was at work at the time (scheduled til 5:30). Home is 15 minutes in one direction, then 15 minutes in my mom's direction, then a good hour from there to Louisville, plus needed time to find the sleep center. Thankfully Bridget was able to get Emily showered and dressed before I got home, and my wonderful boss let me leave just before 4 or we never would have made it!


The test itself went okay I guess. I had some concerns with the way they did some things, but we won't get into those. Emily had concerns with all the wires (see pic above!!). I will say that I watched the little CO2 monitor, and the number I saw most of the time was 44.9. I also saw up to 46.9 (middle of the night) and down as low as 33.9 when she was laughing right before going to sleep. Her respiratory rate itself ran in the 30's most of the night and may have been a little higher on the O2 than off (they used mask oxygen and I don't think enough...again with the technique thing). Early this morning, she did have some rates in the teens off oxygen. Not sure what all these numbers mean or what they're going to say about them...Guess that's why we do the sleep study, so they can interpret this stuff!



The HRCT was done this morning under general anesthesia, which meant she had to be intubated. She did fine with it all until it was time for her to wake up and breathe on her own, and she couldn't seem to get her breathing in order. Even though in the end she did fine, it was still very scary for a mom to see. Pic below is when she was finally coming around a little.


She has a follow-up appointment on the 8th of November with her pulmonologist, so hopefully we'll get results then!

Called the doctor, and they have decided to put Symbicort down as one of Emily's "allergies" as she has tried it twice with the same response both times. Possibly not a true allergy, but she is definitely having some sort of a negative effect from it. So now we are back to trying to figure out if there is anything that can be done for the breathlessness (which seems to be getting worse the last month or so), other than what we are already doing. Next thing we are going to try is restart the Advair and also the Singulair that was stopped in the spring with Emily's liver issues. Honestly I don't see the Singulair helping much (never seemed to before), but hey, it's worth a shot. Only other thing I can think of that ever really helped at all was the Zithromax, but which also had to be stopped with the liver stuff. I don't expect Emily's breathing to ever be perfect, but I'd like to see her back to the point she was last winter and spring. If the Singulair doesn't help, I'll ask about Zithromax again, but I know they don't really want her on any macrolide antibiotics if they can help it. If there is any real risk to her liver, it isn't worth it. HRCT is next week, but insurance is being difficult so we are going to have to wait on the sleep study. :-(

As for Braylon, he was a very sick little boy last night when I got home from work. Weak, sleepy, wheezy, snap crackly popping rice crispies in his lungs, just pitiful. Took him to the doctor and it seems he has a bit of pneumonia. He is now on neb treatments and antibiotics and is already much perkier, although still quite wheezy. Poor little guy! Hate it when my babies are sick!

Other kids are doing well. We had parent-teacher conferences Monday, and Ashton came out with straight A's, and Ryan (who is still graded by number system) has all 4's and one 3 (which is basically all A's except one B). The 3 was because of participation points in Reading class, because Ryan is so quiet in class (seriously??), he rarely takes part in their discussions. Both boys have been behaving themselves in school, and their teachers describe them as "a doll" (Ashton) and "just perfect" (Ryan). Pretty amazing really! And we won't even get into test scores. AShton's math scores were so good, Denny and I are both speechless over that one! Proud of all my kiddos, but so proud of my boys for all their hard work. Now if someone could just bottle some of that good behavior for home!

I wish there was a way for me to stay home with the kiddos. They need consistency, and they need routine. They need me here for them when they are sick and to help them with their homework. There is just so much they do need from me really, and I hate that I have to entrust others with those things. And it really SUCKS that when I get home after putting in yet another 12 hour day with sick dying people who can't breathe, the kids are already in meltdown mode! When I'm home all day, they are on best behavior. It is when I've been working that they get out of hand. I'm tired of coming home to a house that's been trashed day after day. It's a losing battle! If there was some way I could work from home, I would! Or any other way in the world I could juggle their needs and still make money. We have to pay the rent, but I hate feeling like my kids aren't getting everything they deserve, and what they deserve most is a mom! I've got 4 great kids, and their life could be so much easier if I could only be here for them more! Yes, I'm always where there when it counts, but there are times when I have to leave them home when they are so sick, and I just have to pray they will still be there when I get home. Worst feeling ever! Okay, maybe it is just exhaustion talking (6 hours sleep in the last 62, and yes, I know my thoughts aren't flowing, and no, I'm not even sure anyone can follow them, and frankly I'm too tired to care right now), but there really has got to be a better way for families like mine!!!

Thoughts???

It has been less than a week since Emily started the Symbicort again, and as I feared might happen, she is coughing almost non-stop AGAIN. She was only on it about a week last time, and that is what happened then. She is also wheezing pretty bad. But then again, her brother Braylon is also coughing, so they may have just picked up a bug, BUT on the Advair, even with colds and illnesses, her coughing at least has been under control. Not true on the Symbicort. I am going to try to continue it (if we can) until Monday when the doctor office opens, then see what they want to do. I'm hoping all this is just coincidence, maybe just a transition period, and that she'll start improving. She sounds pretty pitiful though. I hate it when the poor baby is sick!

Pictures below were taken at Ryan's football game last week. Emily and Ashton chose to entertain themselves by tossing a football back and forth while Braylon played with dump trucks.








And this is a cute picture of Emily at Ryan's football game.


This is a picture taken at Emily's "birthday dinner" at Ponderosa (only a week and a half late). We asked her if she could go anywhere in the world to eat, where she would like to go, and she chose Ponderosa to eat macaroni, meat, bread, and ice cream. She wasn't lying either. She ate really well!




And then these were taken back at the football field when Emily was getting tired. She was too tired by the time Ashton's game was over that we went on home.




And then last but not least, I realized I have a pic of everyone but Ryan, so I'm putting in this one of him. This is of serious Rhino helping Daddy with a project for school. What a handsome boy!