Welcome Baby Connor!

Yesterday, we went to my mom's for the afternoon, and the kids had a great time playing with their cousins, Emalin, Aleah, and Owen. We also got to meet their newest cousin, Michelle's handsome baby boy Connor James. Braylon was not too thrilled with him, and he stayed right with me the entire day, seemingly afraid that I was going to give him up for that baby. Emily, on the other hand, delighted in holding and loving the sweet baby.

Congratulations Sam and Michelle! And yes Michelle, you do make a pretty baby! :-)

BIG Changes

Pulmonology appointment went well. Braylon was started on antibiotics and is doing much better. He was also started on inhalers, so mom's life just got a lot easier!!! No more bedtime Pulmicort battle. HOORAY!!!!!

And then there is Emily....Emily blew the very best PFT's of her entire life, which is fabulous except for one little thing. She is still breathing like crap!

So what does that mean?? The pulmonologist says that her symptoms do not seem to be coming from her lungs, and they want us to go back to the cardiologist, especially with the problems she has had with fluid retention the last several months. That appointment is scheduled for March 7. Hoping for answers, although not feeling too optimistic that we'll get any at this point. :-(

I was looking back over pictures today, and wanted to share a few of exactly what I'm talking about. I am hoping the computer will let me load them in the right order, but not so sure about that. I'll do my best.....

Emily in March of 2010 the night before the Folkstyle State Finals:

Now, this is Emily the following month wearing a wrestling singlet at the Boys Club Freestyle City Championship. She's the little girl in red. There had been a several pound weight gain in a few days time, back when her liver had become enlarged, and this picture was actually taken after all that had resolved, so believe it or not, she looked worse about 2 weeks before.


To further demonstrate how fast this came on her at that time, this is Emily on Easter morning.

And Emily less than a week later, so swollen that none of her clothes fit her anymore. This outfit was actually the best thing we could come up with because literally NOTHING fit her. We took her to the doctor, and that's when they found the liver enlargement.


She remained swollen thoughout April:

But was back to normal by May:


And since then, we've learned that it doesn't do it nearly as bad if we treat it with oxygen, although nobody will give us a reason for that. But it's happened over and over since, and she will puff up a few pounds, then lose it. Nothing as severe as that first time.

Here she is on vacation in Florida in July:

And then a few days later:


And there are many more examples, but I think you get the picture. She wakes up one morning all puffy, then one morning some time later, she'll wake up and be back to normal. The left arm and left leg are bigger than the right when she's like this. Not huge differences, but about an inch in her arm and a little under 2 in her leg.

This last example is due, at least in part, to steroids. None of the other examples were though. Emily at her brother's birthday party Feb 12:

And then 2 days later on Valentine's feeling absolutely miserable!


Part of me wants me to allow allow them to convince that she is just a chubby kid and all this is normal. But then I hear the way she breathes..... And when the doctors were telling me she breathes that way because of air trapping and it wasn't something fixable, then it was a little easier to ignore it. But then they tell me now that her symptoms are not caused by her lungs, then someone please tell me what is causing them.....

So what do you all think? Am I overreacting?

Catching up

It must have been week before last that I first noticed little changes in Emily. She wanted oxygen on more, was a little more short of breath than usual, and just not quite herself. Then on Monday of last week, I noticed little wheezes, which were treated with Albuterol and went away. Monday night, she had a pretty fair bit of trouble while she was sleeping, and I had to turn her oxygen up to keep her oxygen levels in the mid 90's. The extra oxygen helped a lot, and she settled right down. Tuesday, Emily returned to school, and as the bus driver dropped her off that afternoon, she told mom that Emily had been breathing very hard at school and had to use her inhaler. Mom called to tell me this but said she seemed okay to her. When I got home Tuesday night, Emily was coughing her head off and wasn't feeling well at all. As the evening went on, Emily's sats dipped lower and lower, and by bedtime, her sats were 90 on her normal amount of oxygen, and she was not moving much air at all on the left. When she did get air through, it would sound like a very long low-pitched moan, but most breaths, there was no sound at all, not even air moving. And her work of breathing was awful. Very scary!

I've seen this before, and it almost always affects that left side moreso than the right. Not sure why the left. It also responds very well to steroids. I immediately turned her oxygen up, gave her albuterol, and ran downstairs to get her some steroids. I had to dig through the medicine cabinet and combined the remains of 5 bottles to get a teaspoonful, which is what I gave. Within a short time, she was breathing much easier.

She stayed home from school on Wednesday and went to her pediatrician, where they determined that Emily had likely been exposed to the flu, which had set her off. They put her on prednisone and Tamiflu, and she is much better already. Still coughing a lot, and now suffering from steroid side effects (tearfullness, moodiness, anger, flushed face, hunger, stomach upset, hyperness, elevated pulse, etc.). She is miserable from steroids, but she is doing a lot better. We definitely have a steroid love/hate relationship. Love what they do for her, but hate what they do to her.

Yesterday was Braylon's third birthday, and also Denny and my 12th wedding anniversary. We celebrated last night with a little party for the Bray-man. Mom and my sister Michelle came over, and we all had pizza and cake. Braylon got a big wheel and a few little trucks, and he was soooo happy. He played with his toys while the rest of us played Wii. Had a great time!

Then, of course, Braylon didn't wake up on his own this morning. Fearing he might be ill, I woke him up at noon, and sure enough, he was wheezing, coughing, had a fever, and then as time went by, ended up throwing up. So I fully medicated him, and he is feeling much better now.

Pulmonology appointments for Emily and Braylon are scheduled for a week from tomorrow. Fingers crossed that everyone gets back to normal soon. We're so ready for warmer weather!!!

Happy Birthday Ryan!

Ryan turned 8 this week (the 24th). Hard to believe my little baby Rhino is getting so big! Happy Birthday Ryan! Love you lots!

It just so happened that Ryan was also "Star of the Week" at school this past week. Basically that meant this week has been all about Ryan. As I know it is hard on him being "the healthy one" and having to sacrifice so much attention to his brothers and sister, this was a really good thing for Ryan. I went to the school and ate lunch with him on Monday, he got to take in pictures of himself to show the class, he got to take in a collection of something special to him on Tuesday (he took his wrestling medals, ALL OF THEM!!!, LOL), and finally I got to write a letter to the class explaining what is so wonderful about the Rhino. I must have done alright with my letter because he came home beaming. Great to see!

In the above picture, Braylon waits to eat some birthday cake.

Above, Ryan and Emily give hugs to Mamaw's dog Dante.

And in this picture, Ashton and Ryan were having a little fun in the snow.

Otherwise, the past few weeks have been fairly uneventful. Well, in the comparison to what we are used to anyway. I've always said that if it weren't for bad luck, we wouldn't have any. My truck broke down a few weeks ago, and it still isn't up and running. Rear trailing arms (upper and lower) broke right in two on both sides, so basically the Expedition is ready to fall right apart. Felt like all the wheels were turning as I parked it, and steering was impossible. Thankfully, this happened as I was pulling out of my mom's driveway, and not on the way to the wrestling meet 2.5 hours from home that we were getting ready to leave for. Just so happens that Denny is buying me his mom's old car, and we thought it would be cheaper to put it in the shop to get the brakes done, then I'd have wheels. No such luck. It's in the shop alright, but the job turned bigger than ever, so it's going to be at least another week before we can afford to get it out. Meanwhile Denny was driving us up the hill to mom's house to have a good look at the expedition when his explorer blew up. So yup, just like that, we are down all 3 cars, and I've had to resort to bumming rides to work. Story of my life, but this too shall pass.

There has been a nasty bug going around at work, and I managed to get it a few weeks back and spent 4 days in bed with high fevers. I'm all better now except a little cough and head congestion, but now (of course) Braylon and Emily seem to be coming down with something. They've both been wheezy, pale, and moody for a few days, and Emily has been using her oxygen more often than normal, but otherwise, they seem okay. Emily did have one day of throwing up, which unfortunately began on the bus to school and gave her teacher quite a fright when Emily "turned funny colors and started gasping like she couldn't get her breath." She's over the vomiting now though, just the chest cold stuff. Fingers crossed that this is an easy bug for them to get over.

Emily had a parent teacher conference at house Friday morning, and that went well. Emily continues to progress with her pre-reading skills, and she is right on the verge of putting it all together. The teacher feels she will be reading before she starts Kindergarten in the fall, so that will be good. :)

Oxygen Helps

They say a picture is worth a thousand words. If that's the case, have a look at these:

This is Emily sleeping off her oxygen. We were watching TV, and she fell asleep on the couch last night.

Note how red her face is and the pale circle around her mouth and nose. She was really working hard to breathe in this picture, and her heart and respiratory rates were all over the place. Neck vein was also visibly pounding so hard, you could see it from across the room.

Now look at Emily sleeping about a half hour later with her oxygen on. Very calm, relaxed, heart and respiratory rates down, and just look at her color! She was sleeping like a baby!


Not sure what it is about that little bit of oxygen that helps her so much, but we are so thankful that we have it available to help her rest easier. We know the difference it has made in her life.

We are having problems with nosebleeds again, and from the amount of blood she's lost lately (soaked most of a towel Friday night), I'm guessing she might be anemic again. We've tried EVERYTHING for the nosebleeds, and they seem to improve for a while, then bam. Of course I know the ultimate answer to that is to wean the oxygen to minimize nose trauma, but with watching her work so hard to breathe every time we try, how can we do that?

As always, we're open to suggestions.

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!