Life with Cystic Fibrosis

Well, I complain to myself that I don't have enough time to write up a blog post. I just got my wish for extra time, not the way I wanted though.

There are days when we don't really even think about Elizabeth having CF. We do her treatments then go on with our day. Then there are times when CF rears it's ugly head and slaps us across the face and we are forced to remember what we are dealing with. Then it gets scary for a bit. I feel for families who deal with this kind of crap on a constant basis. I'm hoping this doesn't turn into a normal trend for her.

 Elizabeth has had a cough for probably 6 months now. It's been better then worse then better back to worse. We've put her on two rounds of antibiotics during this time and it helps for a few weeks then she's back to hacking and coughing her head off. At her quarterly visit in March her PFT's (breathing tests) were down a bit from her normal. We didn't worry about it too much, she was feeling fine. However, the stupid cough continued. She had another visit yesterday and I got a phone call from Rob that they wanted to admit her for 10-14 days for what is called a "tune up" in the CF community. 14 days of around the clock IV antibiotics. UG! At first I fought it, I seriously think a lot of the problems stem from her sinuses, they are all blocked up again. That usually causes decreased appetite and coughing. But at her last visit the doc said she was fine for a few more months. It wasn't her regular doctor, I should have made sure she went back a few weeks later. I'm sure there is another sinus surgery in the near future. Anyway, her regular nose doc is out of the office until Sept so that blew that. I finally had to concede that a hospital visit was the best thing. After lots of tears from all three of us (Elizabeth, mom, and dad) we got arrangements made to get her settled up at Doerenbecher. Timing could have been better, both boys are gone this week to camp so I am out my regular babysitters. That and we were supposed to take off for Idaho next week to visit family. So frustrating. That will probably be postponed. They keep trying to tell us that if she does well on her breathing test next week we could possibly take her home and do the treatments at home and on vacation. Um, after seeing how long she is actually hooked up, I don't think so. One antibiotic runs for 30 mins and is needed every 6 hours. The other runs for 2 hours and is needed every 8 hours. Wouldn't be much of a vacation if we had to spend the whole time monitoring the IV. There is a slim chance she could just be good to go by next Tues, but we aren't counting on it :) So, these "tune-ups" are pretty normal for a CF'er. Probably lucky we've managed to hold it off this long. Still doesn't make it an easier. We got her up here about 3 pm Tuesday (June 25th). First order of business was getting an IV started in her hand. They eventually wanted a picc line but we were up here too late. They wanted to sedate her for it so would wait until morning. So in the meantime they just hooked her up with a regular IV. The poor kid has a mortal fear of needles. It's way beyond a normal fear of being poked. Took four nursed to get her to finally let them insert an IV. There is this wonderful person whose job it is to comfort the kids. She did a wonderful job and after Elizabeth started freaking out she was able to get E to breath and focus somewhere else. Then gave her several gifts, stuff she could make and play with, since 2 weeks is a long time to be stuck in the same room with nothing to do. So far, she's doing good. They removed the IV in her hand after getting the picc line in this morning. I was not here, Rob and I are swapping off time up here. Rob said it went well and he got to see the cool x-rays showing the picc line. They spent an uneventful day up here and I came up around 3. Thank goodness for good friends. Several friends stepped up and watched kids for us or made a meal.

Well, I don't get as much time to write as I thought. It is is now day 7 in the "hole". The days are passing. Some are frustrating, some are not. I wish the docs had laid it to us straight about her time here. We kept thinking if she did well on the breathing test (that was today, more in a bit) they would let her go earlier. But one doctor says no, the full 14 then another said if the test is good maybe she'll leave early. I'd rather they just say 14 days, period. I hate false hope. Keep it real people. Anyway, I don't think her breathing test went well enough today for them to let her go early. After several tries she finally blew a 91. She was at 81 last Tuesday so while that is good, we were hoping for better. She isn't coughing anymore and they say her lungs sound really clear so she should have blown higher. I know she's not doing the test right again. We've had problems with this in the past. I can see it, she's not taking as deep a breath as she probably could. But try telling her that. She blew that 91 and thought it was good enough. Erg. Oh well, 14 days no matter what. We see the nose doc tomorrow, not her regular doctor, so not sure I'll trust her :)

Other then all that, E is doing really well. We have spent the last two days playing games and watching movies together. She must be tired today as she's zoning in front of the Disney Channel. She's usually begging to play games or something. I'm mean, as soon as I know she's going to be unhooked from the IV for awhile I make her throw on shoes and we walk the halls. I think she'd rather lay in bed but she needs to move :) She's taking all if it in stride and several of the nurses have told me how much they enjoy working with her. Over the last few days the same lady was working the front desk and every time I checked in she'd tell me how sweet E is. I just laugh and think "You haven't seen her temper" haha. But she really is doing well.

Her parents on the other hand...it's just never easy to have your kids in the hospital. I finally had my melt down Friday morning. I had had a horrible night at the hospital. So no sleep and all the stress and I was a basket case. It didn't help that the day before, Thursday, I got a call from one of the scout leaders. I didn't think anything of it until I realized he was supposed to be on the camp out with the boys that week. I KNEW it would be Jonathan. He's such a stinking dare devil and thinks he's all that and more. Sure enough, little stinker was sand boarding and he took too big a hill and crashed at the bottom. He took the full impact on his shoulder and it broke his collar bone. Oh my freaking heck! I just said I've been waiting for this phone call for most of his life. It was about time. So, they ran him to emergency for xrays. They tried to tell us later that he just bent it. But after looking at the xrays myself I'm pretty sure it's broken and probably needs to be reset, OUCH!! So, Rob is right now at the docs with him to see what can be done. So excited to see what that is going to involve. You know how bad news come in threes? We are still waiting for the third. Unless the fact that someone left the freezer open for a day and ruined most of the food in there counts as the third. Please? I'll take that over more medical emergencies. So, needless to say Friday I lost it. I probably looked like Meredith having a tantrum in a 38 year old's body. Sorry Rob!! We finally decided it was best if I spend the day here and he stay home and work/take care of kids. No more nights for me. We talked to E and she agreed to try one night up here by herself and she did just fine. So that is the arrangement for now. She stays up here by herself, the nurses are great and watch over her, and I come up for the day.

 I will admit I've enjoyed my time with her up here. It's mostly quiet, we play games, laugh together, enjoy movies as much as we can with all the interruptions from nurses and therapists, and no screaming 2 year olds. I love Meredith but she is embracing 2 with everything she's got and I don't have the patience for it. So, I'm looking at this as a mini vacation from my toddler :) Bad, I know, but it's the truth.  I have my favorite respiratory therapists and look forward to their shifts as they love to talk and laugh and you can tell they love their job with these kids. Everyone up here has been very helpful and friendly and just amazing. I'm grateful for all of them. I'll keep you all updated.

First day, settling in.

Getting ready for the picc line. Women in front is Kim. Sorry you just get to see hair. She is the BEST!! Seriously, she is an angel in human form.

Little sister!

Little brother!

We love visitors, especially when they bring games!

Going for a walk

Oh my gosh, as I was finishing up the post someone walked in from Music Therapy and wanted to know if she wanted an instrument. They gave her a keyboard to use to practice on. Was just trying to figure out how to get hers up here. Doernbecher is amazing!

Sick Girl Speaks

Rob and I had the opportunity to attend a CF forum today hosted by Kaiser. It was the first time Kaiser had invited OHSU patients to their event. I had no idea Kaiser had been hosting their own forums/seminars and OHSU their own. I hope inviting each other is something they keep doing.

The one we attended today was more on a personal level. They had a panel of 3 CF patients who spoke to us about their different experiences with the disease. Two had been diagnosed as babies but one not until she was in her 40's! What was interesting is she seemed from an outward appearance to be the healthier of the three. However, she also spends up to 4 hours a day doing her treatments. One young man looked like he'd been having a hard year and he admitted he had. The other lady was also having a harder year but she admitted to not being as good about her treatments. She is also suffering from diabetes. It was just amazing to see how different all three viewed their illness and how it affected their lives.

We then had the pleasure of listening to Tiffany Christensen speak. She is author of the book "Sick Girl Speaks!". She was so fun to listen to. Tiffany had you laughing one minute and tearing up the next. Though the tearing up may have just been me since I cry at the drop of a hat these days. She had so many wonderful insights into her illness and has had an incredible journey through life. She was selling and signing her book after so we picked one up and had her address it to Elizabeth. We gave the book to Elizabeth when we got home and even though it may be a bit over her reading level she is already trying to read through it. E told us she was happy to have it and I think it will do her some good to see she's not the only one suffering from CF. I plan to read it when she isn't and hopefully it will bring up some good conversation.

All in all I'm glad we went. I think we both learned a lot.

Rambling and Venting

Sitting here on a Monday night in a quiet house anxiously waiting for Rob to come home. I'm just bored so thought I'd ramble a bit on here. He's off helping one of our dearest friends hook up her computer and I'm guessing it's not going well as he's been there since about 6:30 pm and it's now 9:15. Sigh. I am grateful though for a husband who is so willing to help others. Doesn't mean I can't miss him when he's gone :)

Lot's of stuff running through my head. Summer is over in 2 weeks. I haven't accomplished hardly anything I wanted to. I feel like I have been busy and running around but I can't tell you exactly what I was doing. Today I made myself start decluttering the kitchen. I was getting sick of the mess I'd see everytime I opened a cupboard. I got most of it done before peetering out so I'm happy. Rob came home and couldn't find anything as I totally rearranged everything too :) I did clean out my sewing room last week. Always nice to walk in there and see it clean so I can just sit down and sew. I'm hoping to get to all the bedrooms before school starts. The kids rooms amaze me. I know I wasn't the cleanest kid but dang, they have me beat by a long shot. Elizabeth has a room to herself and she is worse than the boys most days!! I don't know how they stand it. Any more, clutter just stresses me out. I don't mind a little here and there but when it gets to be too much I can't relax.

Elizabeth's health is weighing me down too. Well, her doctors are weighing me down, let's put it that way. We are back to visits every other week to check her results on the breathing test they make her do. 4 visits ago she was blowing in the 90's. I know the numbers will make no sense and I don't know how to explain them other than 90+ is where she needs to be. So anyway, the visit after that she fell to 70, not good. They put her on antibiotics. Now, mind you, she has NO OTHER SYMPTOMS!! NONE! Other than blowing a 70 she is totally FINE. But they freaked Rob out and put her on meds and said come back in 2 weeks. I haven't been going to the visits cause I thought Rob was handling them just fine. He hasn't been, the docs have been stressing him out. So I decided I needed to go to understand what was going on. This next visit was horrible. They made her blow that stupid test NINE times. NINE!!! All the while the tech is telling us that it takes kids years to learn to do the test right and that most adults by this point have passed out. Um, hello? What the heck! She blew in the low 70's again the first three times. They had her try three more cause she wasn't quirt doing it right. The numbers went up a smidge. So, pulled out the inhaler waited another 10 minutes and tried 3 more times. She got up to 79. All the while I'm watching this whole process pretty sure she's not doing it right. If she's not doing it right why the heck are we freaking out over these numbers? Oh and I should mention that looking back at her previous tests it would appear that 94 she blew earlier may have been a fluke. At home she is not coughing, AT ALL! Pretty amazing for someone with CF. Elizabeth takes karate and she's doing spectacular there, doesn't get winded or overly worn out. She keeps up at home just fine, no wheezing, snoring and NO coughing. haha. Anyway, we said something to the tech about her not doing the test right but the tech assured us she was doing her absolute best. OK, so what? If she's not doing the test right what good is her absolute best? Am I the only one who has a problem with this? So, the doctor then put her on steroids, which I HATE, it must be her airways are swollen or some such whatever. Come back in two weeks. Alrighty, two weeks went by and then it was time to take her in again. This was last Tuesday. She got on the breathing test and still was blowing in the 70's. Steriods didn't work. At this point we start asking the tech questions. Different technician this time. Wow, come to find out, sure enough Elizabeth has been blowing wrong this whole entire time (a year now) and they never tried to fix it! You could see it right there on the graph, she was hesitating when she shouldn't and that threw the whole test off. Once the tech showed us and Elizabeth what was going on, guess what? Elizabeth corrected it and blew up into the low 80's. Wow, really? Oh my gosh, we are freaking out over numbers that essentially from where I'm standing mean nothing because just as I thought all along she wasn't doing the test right. I would have loved to have her do it a couple more times as she was still hesitating for a fraction of a sec but the tech said that was good. We were so happy. Then the doc came in. He took one look at the 80 and said it wasn't good enough we now need to start another round of a super high powered antibiotic that they've had to use in the past. I started questioning the doctor why. I wonder how many parents ask why cause he wasn't very thrilled with having to explain it to me. I need to understand that they need to look at the BIG picture. They need to be aggressive with her cause we don't want to ruin her lungs now do we? I was being talked to like I didn't get the seriousness of her disease. Yeah, I get it. I get that my daughter has a life threatening disease. I get that we need to treat it. But what I don't get is putting her on these drugs when she has abosultely NO symptoms, none. Her x-rays came back with nothing new, they can't hear anything in her lungs and like I said she can keep up with the best of them when it comes to running around. And THEN, he tells us that we need to come back in 3 weeks and do the stupid test again and if she doesn't get up in the 90's this next time he will discuss with us putting her in the hospital for a "clean out". This means 3-4 days in the hospital hooked up to IV's with antibiotics. Are you freaking kidding me? WHY WHY WHY?? I wanted to scream at him! I only agreed to the Zyvox because she does have MRSA in her lungs and it will help her sinuses which is her biggest problem, NOT her lungs. When I asked him about the test and just how reliable the thing was he just kept telling us to look at the big picture and it's the best indicator they have of lung function. Ok, I am looking and in that big picture she's not doing the test right and she has NO symptoms. We proved she wasn't doing it right. And now they want to stick her in the hospital? Again, am I the only one who sees how this makes no sense? I get that they know a whole lot more than I do about CF but I also believe there is a balance and right now I don't think my little girl needs the traumatic experience of a hospital stay. Especially one that involves IV's. You should see her when she comes out of her sinus surgeries. They have just gone and totally roto-rootered her entire sinus cavity and the thing that pisses her off the most is the IV they have to leave in her arm until they make sure she's going to be ok. Yes, now lets put her in a room away from home with one of those suckers hooked up to her arm for 3 or 4 days. I don't think so. Not happening, not unless they can prove to me without a doubt that it's necessary and that stupid breathing test is not going to be proof enough for me. Not until I feel she's doing it right. So, thank you doctors for completely stressing us out over what is, in my opinion, nothing. I'm not looking forward to our next meeting if she does't blow in the 90's cause they aren't going to like me very much. I will refuse the hospital stay and I will probaby refuse anymore drugs, cause they aren't working anyway, and that would be because there is NOTHING wrong. ARrrrrggggghhhh! Can someone please stop the insanity?!

Ok, now that I've gotten myself totally riled up over this again it's time to move on. Or quit. Rob finally walked in the door about 15 mins ago. Computer is set up and working great for our friend :) Have another early morning appointment up at Doernbecher. Elizabeth did a study with an inhaled drug this past year and now we get to go on the open label part of the study where we know for sure she is getting the real thing. We are hoping this will help with her breathing test. Will be interesting to see. Poor thing has to have a blood draw, she just hates needles. I have to bribe her every time we go in. I don't care if she cries or screams but she's not allowed to thrash around. It makes the whole process that much worse. I just love having to pin my little daughter down while she kicks and screams. HA! Elizabeth has done pretty good on the last two so hopefully tomorrow goes smoothly too. Her bribe is going to Build a Bear to buy a new outfit or two for her bears :)

Beasleyville Update

Wow, starting the year off with a bang. One blog post a month so far. Guess this one will be March's :)

I just haven't felt like there has been anything noteworthy to blog about. Figured I'd just give an update on everyone.

We did have a bit of stress over Elizabeth. Her numbers in everything went down in January, including her weight. I don't think we would have stressed so much over it except that the doctors couldn't really tell us what was going on. That was a hard week. It's this really weird kind of stress. On the surface it was all good, it's not like she was really bad off or anything, but underneath Rob and I were seriously stressed out. We've had more doctor visits in the last 8 weeks then we had in the six months before that. We had to change the way we were doing some of her treatments, new antibiotics to try out, etc. All this requires numerous check-up visits. It's amazing to me how we can go a whole year with no more than her regular clinic visits and then BAM! we are taking her in every other week. Ug. It's getting tiring. It's hard to work her schooling around it. I get pretty anal over the schedule I try and keep and all these visits were not in the schedule :) She ends up there for most of the morning so by the time she gets home neither of us is in any mood to do school. Though I have to say I'm grateful we have that flexibility. I can't imagine trying to keep her caught up with the local school.

Anyway, after several rounds of high powered antibiotics her sinuses have cleared up and she's gaining weight again. Her PFT's (breathing test) were back to where they should be at the last visit. The frustrating part is having other kids who get sick. Elizabeth has done wonderfully but now all the boys have this cold that is, of course, in their sinuses. Just praying it passes by Elizabeth, though sadly I don't hold out much hope. She was coughing again this morning. Not bad, but it's there. Fortunately she has ANOTHER visit next week with her docs so they can get a look at her before it gets any worse. But that will probably mean more antibiotics and another visit in a couple weeks out. Sigh. The really, really frustrating part is, this is her in a "healthy" state. I constantly pray we never have to see the other side of CF.

Aside from the CF part of life Elizabeth is still happy-go-lucky. She's taking karate now at the same dojo we've been with for years, haha. She's loving it! It's fun to be teaching her the kata at home or letting her practice punches and kicks :) They have such a cute group of kids in her class there. She, along with the boys, goes bowling every Saturday. Loves that too. She's going to be old enough this year to graduate on from bumpers! Woohoo!! Except that I think she likes to use them instead of trying to bowl without touching them :) I've finally got around to teaching her a bit on the piano and she's picking that up pretty fast. She still loves school and I so enjoy being home with her during that time

The boys are all doing really well, aside from this recent cold. Nathaniel and Jonathan are doing very well in school and enjoying themselves. They both are so great about their homework. I think I've had to get after them like twice to get it done. Both boys walk in, grab a snack and immediately get on their homework!! Not so surprising with Nathaniel but it is with Jonathan. This has been a good year for him and school. He's matured a lot in that area.

I had an opportunity to go on a field trip to OMSI with the 5th graders. I got a really good group of boys and we had a really fun time :) I was able to talk to Jonathan's teacher and get to know her better and I love her even more!! You always hope your child ends up with THAT teacher. You know the one who loves her/his job and loves the kids and tries so hard to make school a great experience. There are many like that at the local elementary but I think Jonathan's 5th grade teacher is extra amazing! We were able to tell her at the beginning of the year that we have high expectations for our kids and we hoped she would too. She definitely has. We will be sad to lose her when he moves on to the middle school next year.

Nathaniel has come home and told us stories of the science dissection projects and how much he LOVES that! Crazy kid. Ewwwww. Definitely was not my favorite. He was getting a kick out of grossing out the girls :) He is an amazing young man. I don't know what I'd do without him. We can trust him with anything. It's a good feeling knowing we can depend on him like that. It's great knowing we can leave him to watch his siblings and know the house won't be destroyed in our absence :) He helps a ton in the morning as our morning schedule is a bit hectic and sometimes Rob and I are gone leaving him to make sure he gets himself ready for school and keep an eye on Seth. He is also the Deacon's quorum secretary. I just sit back in wonder as I watch him take care of all his tasks that his president assigns him without any reminders from us! My fingers are crossed that he stays this way :) I'm hearing stories from my friends with teenage boys and how they change. AAAaahhhhh! Not my Nathaniel :) LOL

Seth is just Seth. He is the happy sunbeam in our family :) Even when he's getting in trouble, he's cute. He is so loving to everyone. When any of us come home after having been gone, even if it's only been 20 mins, he comes running up to the door with his arms wide begging for a hug. When we leave we have to give him kisses. When it's time for nap he starts to cry and I give him a stern look and tell him "none of that" and he actually does stop and will walk to his room and lay down in his crib. He made progress this morning, he got out of his crib by himself! I was sitting on the couch and then all of a sudden there he was with a big grin on his face. He was so proud of himself for having figured out how to climb out on his own. Sigh. I'm going to miss the "cage" and the ability to leave him just a few minutes longer while I try and get things done. However, he is the kind of child that if I tell him to not climb out he will probably stay put. I'm going to try that today and see what happens after nap. We'll see if he can resist the urge to climb out :)

Rob and I are just busy doing our thing :) Work is going well for Rob. I'm busy as always trying to keep up with schooling Elizabeth, scouts, and being a mom. I've decided to try and sell a couple baby quilts and see how well that goes. I'm almost finished with the first one. I've thought about it in the past but have never felt like my work was good enough for someone to want to buy but after looking around on the web I think I have a pretty good chance :) I don't do the fancy quliting but I make a pretty good basic baby quilt, haha. Figured it wouldn't hurt to try, who knows what will happen.

Rob and I bowl on a league on Friday nights. We started with my dad and my brother, Shane, but Shane took off for S. America in November and he's still hanging out there :) We had a friend, Joel, join our team during this last quarter though and that has been fun. I'm not very good but it's nice to get out and spend time with these guys. If anyone is ever interested they have daytime leagues, could be fun to get out of the house in the middle of the day :)

Well, that about sums things up for now. Til next month's post... :) LOL, here is a video of Seth doing "flips".

A Sad Moment

Today starts with a heavy heart. I am not writing the following to gain sympathy or pity. It's just for me to unload some emotion. I often receive comments from people who think I am so strong in the things we have to handle. Most days I smile it off because it's just life, we've been dealt our cards and we are playing them the best can :) And I know there are others who deal with alot more then we do. Most days we can forget how CF has affected our lives and feel pretty normal. Today it's a little harder.

Last night we sent our children to bed, on time for once, and then proceded to get ourselves in bed early. About 9:45 there was a knock on our door and a little girl was standing there with tears in her eyes. I was in the middle of praying and stopped for just a second to listen to what she was telling Rob, sure it was just another nighmare. But then she said something that just broke my heart and I had to change my prayer real quick asking that I be able to tell her the things she needed to hear. My poor little baby had been laying in bed thinking of all her treatments and probably her recent sinus surgery which has led to more medications and the weight of it all finally got to her. She came down to let us know it was too much. Elizabeth occassionally fights us on her treatments but for the most part she is compliant and doesn't complain. To hear her tell us that it was too much and too hard was too much for me. No six year old should have to lay in bed at night stressing over these kinds of things. We both held her tight and told her how much we loved her. We told her we thought she was so brave and so amazing. She and I cried together. I told her I also wished she didn't have to do these things, that it was hard on mom and dad too. We talked to her about why she had to do all these treatments and she knew it was to keep her healthy. We told her it was ok to be sad, that sometimes life just gets too hard and it's ok to take a moment to cry over it. Rob then turned to the scriptures to show her there were others who had felt life was too much and then read Heavenly Father's response to their prayers. I know I am not one to share my religious beliefs on here and I have my own personal reasons for that but I have to share here that I am so grateful there is a Plan. I know Heavenly Father is aware of us and my daughter. I know Elizabeth would not be nearly as healthy if it weren't for answered prayers that have been offered up by loving family and dear friends. I know He has a plan for her and will do what He can to help her along. I know she is an amazing little spirit and today is one of those days where I am truly humbled that we were chosen to be her parents. I feel so unequal to the task most days and I have to tell myself constantly what we told her last night. Heavenly Father doesn't give us anymore than we can handle. And we definitley can't do it alone, we need His help.

So for now I need to learn from Elizabeth. She had a good cry with us and was able to unload all her worries and weaknesses. Today she is running around like nothing happened, happy and cheerful :) She knows she's loved by us and Heavenly Father and for now that is enough. Takes us adults a little longer to let go of the hurt I guess :) I'll totally be fine in a few hours, just had to let myself have a sad moment.

Thank You!!

A great big thank you to all of you who showed your support and donated to our team this year for Great Strides!!! We did make our goal :) Yesterday we got to go to Oaks Park and hang out with the hundreds of others who put together teams to raise money for the CF Foundation. I believe they announced our walk raised $150,000!! Wow! I wasn't very good about trying to create a team so our little team consisted of our family, my good friend Lori, and my brother. We decided to let Elizabeth stay the night with a friend the night before and stay with her while we were at the walk. I know she was so bored last year as she's not allowed to really play with the other kids. You just don't know who has CF and there is a very strict 3 foot rule at these things, those with CF have to keep 3 ft away from others with CF or those they just don't know. I'm glad we let her go to her friend's as those two I hear had a wonderful time together :) Anyway, it was gorgeous out, we all got a nice sunburn :) The walk was great, even found a path that shoots off and goes through another nature park so we turned into there just for the shade!

Lori, Seth and the Blazers mascott. So here is where my ignorance of sports comes into play, I still have no idea what that thing is. A wolf? A cougar? Huh? Whatever, Seth thought he was cool.

Lori works for Farmer's so we stopped to get a picture by the Farmer's sign :)

Someone took various comments off of people's team pages and printed them up and put them all over the stage. We found the one Beth and Dean Peden had posted. It says "We love you Elizabeth and want you around a long time". Thanks guys!

This is Lindsay. She runs the show every year! What is interesting about her is her daughter also has CF. Her daughter's name is Elizabeth Rose (though she goes by Ella). She is one year younger then our Elizabeth Rose AND she has red hair!! We found this out when one day the doctors got confused by the two Elizabeth's on the chart. They happened to have an appointment the same day we did. The girls have met but as I've mentioned before they won't ever be able to hang out together.

Sinus Surgery

One of the complications with CF is that some patients develop sinus problems. The mucus is so thick that someone like Elizabeth can't clear it out of her sinuses, even with antibiotics. This causes polyps which block her sinus cavities. Her first surgery was July of '07. She was so impacted there wasn't even the smallest air space in her sinuses. The polyps were so bad the bridge of her nose was actually changing shape! The doctor told us that most patients get seen every 6 mos to a year for another surgery. 4 mos after that first one the polyps were almost as bad as the first time, and it had taken 2 years at least for them to get that bad the first time around. We weren't too happy about that as it looked like she'd be going in several times a year for this. There isn't much they can do, just hope that after so many surgeries scar tissue develops making it harder to grow polyps. Anyway, the second surgery was in Dec of '07. So, we made it a little over a year this time around!! We had changed the way we delivered one of her meds (it's inhaled) and that seemed to help keep the polyps at bay for most of last year. Then she started getting the runny nose that wouldn't quit in November last year and we knew it was time again.

Elizabeth's surgery was today and it went well. It's always such a long day up there. She was checked in at 8 am and they pulled her back for surgery by 9:30. This is our third time and I still cannot help the anxiety I feel when we walk her to the operating room doors then have to say goodbye to our baby. I'm a bit of a pessimist (though I'd prefer the term realist) and can't help but think of all the things that can go wrong. I have to force myself not to think of those things or I'll just sit there and bawl. We curled up (the best you can in those chairs) and read our books. We got smart this time and brought something to do :) At noon our doctor came out to tell us she was done and it went well. We waited until 2 before finally making her wake up enough to get her dressed so we could leave. They must have dosed her up good with anesthesia because here it is 4 pm and she is still in bed sleeping it off. Fortunately she seems to heal pretty quick from these operations so I imagine she'll be running around as usual tomorrow. She is supposed to take it easy for a day or two but in the past it's been hard to keep still. I imagine having all that pressure gone just has to feel great!! I look forward to her feeling better because along with the return of her sense of smell comes a return of appetite! Elizabeth eats so much better after her surgeries! Oh and more good news-The doctor told us when she went to get a culture straight from Elizabeth's lungs (through the breathing tube) it was hard to get one, meaning there isn't much mucus in her lungs!! That's what we want to hear :) This is all about keeping her lungs clear and healthy!!

Elizabeth with Fluff before they took her away. She's smiling because Rob just showed her a bag of gummy worms he was holding for her when she got out :)

Good News!

Rob took Elizabeth in this morning to have her nose looked at. Sadly, she got that awful cold going around a few months back and it's been running ever since. Which means the polyps have returned. She's been on two rounds of antibiotics in the past month and she's still stuffed up so we know they are intruding on her nasal passage. So, sure enough, a CT scan was ordered and we need to call to set up another surgery date. I am just grateful it's been over a year since the last one, that is a good sign.

Anyway, on to the really really good news! They had to weigh her at this appointment. I mentioned in a post awhile back that if she doesn't gain any weight soon they will be talking about giving her a feeding tube. We just don't want to deal with that. So for the past 3 months we've been trying to get her to eat whatever she can. It's paid off. The goal the doctor gave us three months ago was 48 lbs. That would have been a 4 lb gain. She's now a little over 50 lbs!!! Yeah!! She gained a little over 6 lbs!! She has another visit with the CF clinic next week and we are going to try and get another 1/2 lb on her in that time. She totally earned her reward which was a trip to Build-A-Bear. We will go do that before her surgery so she can take her creation with her to the hospital. I was so excited to hear that and so relieved. I was so sure it wasn't enough. Elizabeth just doesn't like to eat. It's good to know that what little more we were doing has paid off. What a blessing!

Unmask the Cure

Friday night Rob and I had the chance to get our feet wet in the pool of volunteering for the CF Foundation with the Portland chapter. We signed up to help with the yearly dinner/auction. We were instructed to dress in all black and given these vague assignments. Vague only because we had never attended one of these. So needless to say we were a bit nervous as we had no idea what to expect.

We didn't have a great start to the evening as we left Aloha at 4:15 and barely got to the Marriot in downtown by our expected arrival time of 5:30. Grrrrr. One wrong turn in Portland completely threw us off. But we made it with a few minutes to spare. The theme this year was "Unmask the Cure", it was a masquerade. They had fun masks for sale and everyone started showing up in ritzy black suits and dresses. Talk about feeling uncomfortable. Rob and I come from hick roots and have never been comfortable around glamour. However, it was fun to sit back and watch just how the rich behave :) Haha! Pretty much like "normal" folks just with fancy clothes on LOL! I wish I had grabbed my camera out of my purse. One lady, I found out later is one of the head haunchos for the Portland Chapter, was completely decked out in masquerade attire. A gorgeous Elizabethan type dress with this elaborate mask. She was very pretty.

Rob and I were in charge with a couple others to walk around the silent auction tables and keep on eye on the bids. At the close we were to grab the bid sheets and run them to the front desk. It was disheartening to see that at least 1/2 of the items offered received no bid at all. The ones that did, those people received some awesome deals as no one tried to outbid anyone. It's hard not to take that personal as this is the money that is being raised to find the cure for my daughter.

Following the silent auction was the live auction. That got better. Still, I'm sure after recent economic events, people were feeling a bit less rich :) At one point they stopped the auction to let three families come forward and talk about how CF has affected their life. I was not prepared for that. Not only am I super emotional when it comes to this stuff but I was stuck right up front. During the live auction it was my job to run the bid sheet to the highest bidder and have them sign it so I had to be right in front so I could pay attention. I had to bite my tongue the entire time they were speaking to keep the tears from rolling down my cheeks. It's so heartwrenching listening to how others have learned and then dealt with their child being diagnosed with CF. One family lost their daughter just a few years ago. She was only 25. A rant for a later post is the fact that all these families discovered their child had CF during the first few months of life. We waited 2 1/2 years before we found out what was wrong with Elizabeth. But like I said, I'll rant about that later.

During this time we got to talking with a really cute couple. Lindsay and her husband Jon. Lindsay actually approached Rob at one point and asked if he was Elizabeth Beasley's father. They started chatting and then he brought her over to meet me. Come to find out our daughters were up at Doernbecher at the same time for a regular routine appointment. They both have the name Elizabeth. Pat, the nutritionist, had come into their room and got things confused with our daughter who she had just seen. That's when they found out our daughters have the same name of Elizabeth Rose. They both have red hair. They are a year apart but their birthdays are within weeks of each other. And they both have CF. Lindsay is on the committee for the walk that happens in the spring, Great Strides. I was wondering where I had seen her before. We went to help with the walk this year. Anyway, the biggest let down to all of this is the fact that these two little girls can't be friends. We could let them meet but they have to stay 3 ft away from each other. Of all the stupid things we have to go through with this disease this one saddends and angers me most of all. So, I'm hoping to get in contact with Lindsay again and maybe at least exchange pictures and keep in touch.

As the night progressed you could tell the alcohol was starting to loosen people and their wallets up :) LOL They restarted the live auction and there were a lot of funny moments. The auctioneer was ingenious. A set of car keys, Lexus, were left in the bathroom and then found. He actually started to auction them off and people started bidding on them!! The owner had to pay $100 to get his keys back!! He did that with several items later in the auction. Didn't even miss a beat, took advantage of every situation he could to raise money. All in all I think the Portland chapter did pretty good. I think I'll write Danielle and ask just how much was riased.

It was fun to go help out. I very much want to be more involved. Danielle had contacted me last year but I had just had a baby and didn't feel up to it. Now that everyone is a little older I'm feeling like I can be more involved and I'm looking forward to more chances to help. It is for my daughter after all :)

CF Woes

Elizabeth had her quarterly CF appointment this morning. Not a happy one. As many of you know Elizabeth is very skinny. Pat, the nutritionist, gets after us at almost every appointment about her weight. Half the time we don't know what to do because Elizabeth just doesn't like to eat. I know, weird. So we've tried a couple strategies and despite these her BMI has steadily made it's way down since December of last year. If it goes down again by the next appointment we get to look at having a feeding tube inserted into her stomach and she will be fed through that at night while she sleeps. Weight is so important with CF. They want as much fat as they can get on these kids not just for growth but when things go wrong and they get really sick they need fat to lose and not waste away. Elizabeth did get really sick just a few months ago and refused to eat for a week. By the end of one week we could see bones sticking out and she looked awful. We are STILL trying to gain that weight back. This is so incredibly frustrating. Most days we go about our day and don't even think about this stupid disease and then we have these days where we are reminded yet again we can't do that. At first I was thinking "OK, a feeding tube, can't be all that bad" until I asked Pat how long they have to keep them in. In most cases if one has to be inserted now at this age it stays in until they are 18-19. If she can't get a grip on eating now she won't as a teenager so they'll just keep it in. All I can think is lovely, one more way she has to be different. Elizabeth loves to swim and while I'm sure she can swim with the thing it will just poke out and others will always be asking what it is. Same with any cute tops that are tight fitting around her middle. And I know Elizabeth, she's going to hate it. She doesn't even like band-aids on her skin. The first thing she begs the doctors to take out after her sinus surgeries is the IV. She could care less that they just roto-rootered her nose and it's dripping blood, just get the darn IV out of her arm :) So yeah, let's add a permanent one to her stomach. I know the tube is better then wasting away from malnutrition but these added little bonuses sure get tiring to deal with. I can't imagine what other parents go through with children who are so much worse off. Elizabeth is very healthy, too skinny, but healthy lungs. We do a lot to keep her that way. And just when you get a handle on one thing something else pops up. Sigh. As always, we'll do what we have to. Doesn't mean we have to like it. As for the next three months we will be creating a chart that will help her count her calories. The poor girl has to eat 2340 calories a DAY to get back up to where she was last December. 75 g of fat and 50 g of protein. I figure we are doing good these days to get 1800 cal in her. So, counting calories to gain weight, never thought I'd have to deal with that :) She loves anything with numbers and loves to chart things so this is where we'll start and I'm keeping my fingers crossed that it works.

Weekend Happenings

Saturday we volunteered at the CF fundraiser at Oaks Park. Every year across the country local chapters put on a walk to help raise money for the CF Foundation. I didn't know about it in time to put together a team for the walk but I was able to go help at one of the stations. I was put in the kids corner where I just needed to help kids make crafts or play games while their parents mingled. It's always so hard at these events because they've found that people with CF can very easily transmit their bacteria to others with CF. And like I've said before once a person gets a bacteria stuck in the mucus in his/her lungs it's there to stay. So now you pretty much have to keep your child 3 ft from other people at all times. That's the worst part about this disease, these kids and adults can't get together and support each other, they could make each other more sick then they already are. I found out a lot of families don't even bring thier child(ren) with CF to these things. They can't even come enjoy the activity set up to help them. How sad is that? I just had Rob keep a close eye on Elizabeth while we were there.
It was amazing to see how many people showed up for it. Some of the teams were huge! It was very encouraging to see so much support. I so wished I had had time to get a team together. I've really been feeling a need to get more connected to my community and I'm thinking this is one way I can. I will be looking into what more I can do with our local CF chapter. I know they have many fundraisers throughout the year so I'd like to get in on more of them.

Later that night the kids were running through the sprinkler as it was another nice, hot day. Nathaniel came running across the deck and slid his foot over a nail sticking up in in the deck. He tore a nice little gash across the ball of his foot and totally freaked out! I guess I shouldn't blame him, there was blood everywhere. But dang, it took a lot of coaxing from Rob and I to calm him down enough to get a good look at it. I have to admit I really thought about getting my camera but it really wasn't a good time. Not sure everyone would want to see the blood pouring out of his foot like that either. Ug! So, off to urgent care, again. We've been to urgent care more times in the last two weeks then we have in the last 5 or 6 years. Crazy! They didn't give him stitches, guess they don't like to stitch the bottom of feet, so they just glued it together. Nathaniel is doing fine. Rob told him to keep a sock on his foot and we chuckled when we saw him put a sock on that foot and not the other. Why would the other foot need a sock, really? So he's been running around the house the last couple of days with only one sock on :) Gotta love him!!

Elizabeth

I've been wanting to do some highlights of each family member and today I feel I should start with Elizabeth. Probably because I've been in contact with someone from our local CF group about helping with this year's walk to raise money.

Elizabeth is a bright little girl with red hair that loves books and doing crafty little things. She adores her little brother, Seth. Elizabeth loves to play outside with her older brothers. Some days she very much enjoys aggravating her older brothers :) She has taught herself how to read and does a fantastic job at it and like her brothers has a way with numbers. Elizabeth loves to sing and attends a weekly singing group. This time around they are learning folk songs.

For anyone who doesn't know, Elizabeth also has Cystic Fibrosis. It's a genetic disease that's throws off the body's salt and water balance which causes the body's normal mucus production to go off kilter. This in turn causes a very thick sticky mucus that wrecks havoc on different parts of the body. The main concern is the mucus that develops in the lungs. Once it's in there it's in there AND it harbors bacteria. These bacteria cause flare ups which in turn cause more mucus which in turn damages the little air sacs in the lungs. It's not fun and there is no way to reverse the damage once done. CF exhibits itself in hundreds of different ways though and our daughter is extremely blessed in that she has NO lung problems. Instead she suffers from a blocked pancreas which means she can't produce the enzymes necessary to digest fats and protiens. This is easily fixed with enzymes she can take by mouth. Another recent complication manifested in her sinuses. Last year she had two sinus surgeris within months of each other. The doctor had to go in and clear out all the polyps that had completely clogged up her sinuses. I mean there were NO airpockets. The polyps had actually started causing the bridge of her nose to flatten out because there were so many trying to cram their way in there. The first surgery went really well and for the first time in a long time Elizabeth could breath through her nose. It was then that I realized she probably couldn't smell either. All those little stops by our roses for the past couple years where I told the kids to smell them and she probably couldn't. I just wanted to cry over that. She ate like nothing else after that surgery too. I realized also that she probably wasn't tasting the food right, no wonder we had spent so much time practically forcing her to eat. Sadly at her two week appointment the polyps were coming back. Had to start up a round of oral steriods and back on the nasal ones. Two months later it was if she hadn't had the surgery, the polyps were so bad. So we scheduled another. We had been warned, Elizabeth could be having sinus surgeris every 4-6 mos for the next couple of years but we were hoping. This last surgery took place in December and it's now almost May. The polyps started coming back but they weren't in her nose yet so we are just waiting but at least this time they have taken longer to form. We will be taking her in soon to check on them and see where they are at. The polyps form, of course, because of the mucus in her sinuses. It's so thick and sticky it aggravates the lining which causes the polyps to form.

Anyway, life for us is actually pretty normal. It could be a lot worse. Elizabeth is truly blessed. She is healthy and happy and some days full of more energy then I can handle :) Not to say I don't worry about her future. Most of the time I just won't let myself think about it. Her CF could take a turn for the worse and she could end up in the hospital for months. Looking farther ahead, she very likely will have a hard time having children if she can at all and that makes me very sad. So, I just don't think about it. Science has made so many advances in the last couple of years that we are very hopeful they find a "cure". In fact, they have just announced a new drug that has made it through phase one of its clinical trial I think and it's proving to actually reverse the affects of CF. We are keeping our fingers crossed.

The walk this year is on May 17th at Oaks Park. I didn't know in time to form a group to raise money but I will be going to help out with stuff like registration and helping along the trail. If anyone else is interested please contact Danielle Kilian dkilian@cff.org , they still need volunteers. Hopefully next year my life isn't so crazy (hahahahahhaha) and I can put a group together for the walk.