"Look Mom, no training wheels!"

Emily has been working on learning to ride her bike for ages. She is 5 and a half years old, will be six in September, so this might not seem like a big deal to most. After all, Ryan could ride a bike since the first time he touched one at age 3, and there are lots of other kids riding a lot earlier than Emily. But most other kids don't spend their first years tethered to oxygen, so to Emmers, this is a very big deal!

Last summer, she carted her oxygen around in a backpack most of the time, and it really limited her movements. She rode her bike often, with training wheels, often with the oxygen backpack. This summer, Emily has mostly opted to leave the oxygen inside, except for a few really hot days. We also moved next door to some little girls who spend a lot of time on their bikes outside, and Emily is eager to be one of the girls. Apparently, while Dad and Poppy were working on the deck out front the other morning, Emily infomed Poppy that she needs "those stupid training wheels" taken off. Well, he took them off and Emily tossed them in the trash for good measure. Emmers started riding the same day! She is so proud of herself!

Health-wise, Emily remains the same. They started her on Theophylline a few weeks ago to see if it might help with some of the shortness of breath, and the only difference we see so far is that she doesn't seem as swollen as she has. Her weight 2 weeks ago was 64 pounds, and this morning, that was down to 57. Of course, that can all change overnight with Emily, so we're not making much out of that. As for whether the medicine is helping or not, I really don't know. She still seems to pant and takes multiple breaths during each sentence, especially if she is doing something while talking. And the heat is really getting to her! A few days, she has chosen to spend hours at a time sleeping with her oxygen on. Then there have been other times when she has been extremely active, even for Emily, and she has spent a lot of time outdoors the last month or so, so maybe the medicine has had something to do with that!

All in all, Emily remains very well, and we feel very fortunate for that. Her PFT's are pretty good, and she remains stable in the problems she does have. Her breathlessness is not improving, but it is not getting worse either, so we can live with that. It has been over 2 years since she has been hospitalized. She is developing normally and for the most part seems to be a normal 5 year old. We feel so lucky and so eternally grateful for all that her doctors have done to help her over the years!

That said, we do still have our concerns, and so much about Emily doesn't always seem "normal" to us. A lot of it, we choose to ignore, and we have gotten pretty good at "tuning out" her breathlessness. If it doesn't affect her, or if it isn't something that we can change, then why should we worry about it? Still, we are left with questions.

One such question: I walked into Emily's room a few weeks ago and found her sleeping without oxygen, and her neck veins were jumping. I hooked her to the pulse oximeter, and SAT's were fine even without oxygen, but it just looked so odd. I turned on the Oxygen and this stopped. Pulse rate also decreased 30 points with oxygen. I took a short video to demonstrate what I am talking about. So I guess my question is, is this normal? Do you other ILD moms see this in your kiddos? In your healthy kids? My healthy kids do not do this, and Emily does not do this with her oxygen on, but she does when she is sleeping without it. Is this something I should even be concerned about? Is this just another example of Emily's body trying to compensate for her lungs, or is this a case of Mom paying too much attention? What do you all think?

Dad's Graduation, Ryan's race, and 2 Birthday Parties

Wow, it's been a busy weekend! How many things can you cram into a few days time? And this was actually with skipping Freestyle State Finals! Imagine how crazy we would have been if we'd tried to squeeze that in too!

Friday night was Denny's graduation. We were going to take all 4 kids, but in the end, we opted to leave Emily and Braylon with my Mom, and it was really a good thing we did. There is no way I could imagine sitting there for 5 hours with those two! Ashton and Ryan did get to see their dad graduate though, and we are all so proud!
Above is Ashton, Denny, and Ryan after Denny's graduation. Congrats Dad!
And then above is a picture of me with Ryan.

Then Saturday morning was the Molly Datillo Run downtown, and Ryan competed in the boys grades K-3 half mile. Always the competitive one, Ryan was a little disappointed (tears and all) by his 24th place finish, but he did great! So proud of my Rhino!


Then today was my Grandma's birthday party and also cousin Owen's birthay party. Happy Birthday Owen and Grandma!
This is newest cousin Connor at Owen's birthday party.
Emily playing at "Imagination Station" at Owen's birthday party.
Braylon
Ryan all dressed up in his suit for Owen's birthday party. He said he wanted to look good, and I think he did!
Emily smiles for the camera.
Braylon and Owen play in cars.
All sorts of fun things to do!
Kids at Owen's party. Happy Birthday Owen!
Owen blows out the candles on his really cool cake.
And even Ashton got to play!

We made short appearances at each, then rushed home to finish up on laundry and housework. After our busy weekend, and busy few weeks actually (moving houses plus working overtime the last few weeks), it feels great to just sit down a while!

Emily has been doing well lately, except for a hoarse voice that has gone on for weeks. She has an appointment on the 23rd, so we are holding off til then. I am not sure if it is allergies (although she is taking Claritin) or maybe it is a side effect from her Advair. She has no sign of sickness, denies a sore throat, and looks great! I guess we'll see!

In other news, Emmers is working hard at her letters and numbers and will "graduate" from pre-school next week. She just brought me a piece of paper with a sentence written on it. "My cat is fat." She was soooooo excited to have written this all by herself. :-) Yup, I think my baby is ready for Kindergarten!

March 2011

Emily's cardiology appointment went well. Other than the little PFO that she has always had, they did not find anything out of the ordinary from a heart standpoint. The PFO is not causing her issues, and they don't reccomend fixing it. They say we should bring her back in a few years just to make sure everything remains stable, but they do not forsee any problems with her heart.

The heart doctor said basically that Emily is out of breath because of her lungs, and any swelling is probably also caused because of her lungs during exacerbations. So as she has always been, I guess. We can deal with that, but it is just frustrating when we go to doctors and have them tell us how great she is, when anyone in their right mind can look at her and see that she doesn't breathe normally at all. What I took away from the pulmonology appointment was that Emily's pulmonary function was pretty much normal, and there is no pulmonary reason for her to be the way she is anymore, so it had to be something else. When they said we should see the heart doctor again, I almost had some hope that it would be the stupid PFO, they could fix it, and she could get on with her life. No such luck.

Maybe I misunderstood at the pulm appointment, but I am getting really tired of everyone telling me she is fixed when she isn't! She's better, yes, a whole lot better than she was as a baby, but she is not fixed. If they can't fix her, I want them to stop giving me false hope and just let her life as she is. She does okay as long as she has her extra oxygen at night and her inhalers, and steroids when she is sick. But if they can fix her, then I want her fixed! I just wish I knew how to express this to the doctors!

Part of me is longing for the old days with our old pulmonologist. I didn't like him because I felt like he didn't listen to us, but up until she was about 2.5, I felt like he always acted in her best interest and honestly was the only doctor I trusted with her life. He always knew the right thing to do. Emily survived the sickest times of her life, and I know he had a huge part in that! I couldn't have kept her going back then without his input, and for that, I am forever grateful!

Of course after the crying I did in his office right after I had Braylon, I don't feel comfortable continuing to see him, and I don't feel he has any respect left for us. Then very next run-in, he declared Emily to be cured and stopped her oxygen....and you see how well that worked out for her. And then very next run-in, Braylon was in the hospital, I had to push some residents around to get Braylon properly cared for (and yes, I am THAT mom, and I will do it again in a heart-beat, you don't mess with MY baby!), so he was angry with me about that, and we had words that resulted in my breaking down into tears yet again. Soooo.....that really isn't an option for us. We see the other doctor, who I LIKE very much. But liking isn't everything....I just want her taken care of. That is the most important thing, and I will cry, beg, scream, fight, do whatever I have to do to make that happen!

Sigh*

Okay, rant over.

So here's the thing....she is sick again, gagging, coughing, wheezing. Inhalers are keeping her going, but not well enough. It is her asthma acting up, and I pray that she improves quickly on her own, without steroids! The boys all have something similar right now too.

I am getting ready to take Ashton to the doctor in a few minutes for something else entirely, what appears to be a broken finger (thank you wrestling practice). The boys are wrestling in the Indiana Folkstyle State Finals tomorrow, so we have to find a good solution for that finger, so that it can be stable, but he can still wrestle. He is already registered, and he has his heart set on Nationals this year...so he needs to go to State to qualify.

Emily is sitting this State Finals out. We're hoping to get her back on the mat in time to qualify for Freestyle State.

Emily's "Lucky Bear"

Emily's cardiology appointment is on Monday, and I would be lying if I said I wasn't nervous. But we've been down this path before, and other than a minor heart defect (PFO), they have never found anything. I guess we will see if anything turns up this time. Obviously, something isn't exactly "normal" with her, and we are hoping for answers, and an easy fix would be great news too. Fingers crossed, but hopes are not up.

Then next weekend is the folkstyle state finals. Emily qualified a few weeks ago, but I don't think she will be competing at State. Maybe next month at the freestyle finals, but I just don't think she is up for it right now.

This picture below is of Emily all dressed out for wrestling in Jeffersonville a few weeks ago. I went to take her picture, and she pulled this little bear out of her bag...stated it was her "lucky bear." In fact, this bear has been with her from the very beginning, lying next to her in the ICU during her worst days as a baby (other picture). A lucky bear indeed!




This bear has been through so much with Emily, and I was surprised to see she still has it! Maybe we should bring it along on Monday for luck!! Couldn't hurt!

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!!!