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!

Catching Up, Again.

I hate it when I let things slide and I don't keep up on the blog. October through Christmas just got busy for us and I didn't want to take the time to update and share. Now, I'm overwhelmed and everyone is just going to have a shortened version of events :)

October 2012 was a very exciting month! Rob's family came out to see us for a few days. Was so good to see everyone! My kids were able to play games and hang out with Grandma and Grandpa Beasley AND GREAT Grandma and Grandpa Beasley! What great memories. We also enjoyed time with aunts and uncles.

Four generations!

Following our time with them we immediately took off for California to Disneyland. We've been saving up for this trip for awhile now and finally the time had come we could go. We had a BLAST!!! We were able to enjoy the park for 4 days. The best part was Celest and Karen met us down there for the first two days. That was such a relief as they knew all the ins and outs and we didn't have to lose time trying to figure things out. Definitely helped to have 2 extra sets of hands :) They even took the little kids for us at one point so that Rob and I could go enjoy some time alone with the older two. It is something we want to do again in the future, when Meredith and Seth are old enough to really enjoy it. Poor Seth-every night we climbed into the shuttle back to the hotel he fell asleep as soon as he sat down. I will do things a little differently next time. Four days in the park was fun but we had no break. Next time I'd like to be down there for 5 days and split the four days up. Have a day in the middle to just chill. It was fun but man our feet hurt and we were all so tired. I was so grateful for the 2 day car ride home as it gave my feet time to heal.  I didn't think I'd ever be able to walk again!!


 Nathaniel celebrated his 15th bday at Disney. We got him a special pin that said it was his birthday so cast members and even other park goers would wish him Happy Birthday!


















Elizabeth turned 10 at the end of October. We had a quiet family party at home.

The kids all went out trick or treating for Halloween. Well, Nathaniel was going to but he got with his friends and they decided they didn't want to so he was home early. Finally too old :)

November was quiet, we had Thanksgiving here with my Dad. He bought us a yummy ham and we had all the other fixings. We just have never been turkey people. Not very often we actually cook up a turkey. Rob had the week off so that was nice. He helped me get some things organized in my sewing room. I was starting another quilt project and needed it cleared out. It tends to turn into the junk room when I'm not using it :)

December, of course, brought in getting ready for Christmas. I wasn't able to put out the decorations I wanted to (same with Halloween) as Meredith is at that age where she will NOT leave anything alone. So only things I could put up and out of her reach came out. I even decorated my white tree for downstairs and ended up undecorating it because she couldn't leave the bulbs alone, at all. She is quite the stinker these days. I gave up trying to teach her to leave them alone as she'd just go and do it as soon as I left the room. So, gave up and put all the bulbs back in their boxes and we had a plain ol' white tree downstairs.
We went out with my Dad and Beth to get a real tree for upstairs. The kids had fun decorating it, I pretty much let them at it now and they do a pretty good job. It was funny to see that over the following few weeks the ornaments were eventually located higher and higher up the tree. Meredith couldn't leave those alone either. So eventually the bottom 3 feet of the tree was bare. Maybe next year. She is the only one who just couldn't leave the ornaments alone.

We got to see Celest and Karen for a couple of days again. They try every year to come down around Christmas Eve. The quilt I was making was for them. Biggest I've ever made. I ended up needing Rob's help while I quilted it. Such a great guy, he'd just stand there holding the bulk of the quilt for me so it wouldn't fall off the table while I quilted it. It was going to be my most favorite quilt ever but then we washed it and one of the fabrics bled all over the quilt. It was all I could do to keep from crying. After all that work, to see it ruined. Of course they were gracious and said they loved it. All these years of quilting and I've NEVER had a fabric bleed. Ever! Everything was pre-washed, there were no signs of a fabric having bled on the others in the wash. So I have no idea what happened.

The quilt before it was ruined :(

We had a nice Christmas here at home. Dad joined us later in the day. Everyone received some really nice gifts. Was just a nice, laid back day. Elizabeth composed a song for Christmas called Midnight Christmas. I tried to put it up here once but it wouldn't work. I will try again to get it to work, it is a fun song. She amazes me with her talent for music!

A few days after that was our annual yurt trip. We did things a little differently this year. Rob took the kids and I stayed home. I know GASP!!! But it worked out really well for both of us and we each had a good time. Rob knew I needed some time away from the kids, I love to home school but it takes it toll when I don't get a break from them, which hasn't happened since I had Meredith. So he offered to take the kids and let me stay home. Rob had a fun time with the kids, the weather was gorgeous for them, and he even got some really nice pictures while down there. I was able to start and finish a quilt for myself, a wall hanging that is now up in my sewing room. I was able to sleep when I wanted and enjoy the quiet. Meredith is a screamer and it was heavenly to not have to listen to her for a few days. But it was good to have them all home with me again! I did miss them all :) The down part was everyone (but Rob) got sick with this stupid head cold that is STILL lingering. So there were a few things that I had wanted to do but couldn't because I just didn't feel well.

Now here it is the New Year! New adventures to look forward to!

And ACK!! Since writing the above another month has passed and it is now March. Sadly, not much more has happened. We all got sick again and that lasted about 4 weeks from start to finish. We had everything from runny noses to pneumonia and bronchitis. SOO happy that is over with. No more sickness, it's not allowed.

The weather did get warm enough this past Friday (March 1) to take the kids to the zoo. We were having some serious technical difficulties at home. That kept us from getting any amount of school work done so I said "Bag it!" and piled the three kids in the car and we took off. 1/2 of Portland thought it was a gorgeous day as well but we managed to find a parking spot and got in. We had a very enjoyable time and it was good to get out in the fresh air away from the stresses of blown up computers and dead iPods (which is the only device that contains my complete calendar, grrrrr). Since then Rob has managed to fix my laptop and I'm busy scanning in assignments that needed to be turned in. Such a relief to have it back up and running again. The iPod Touch is another matter. Rob has no hope of getting any of the info off of there which just makes me sick as I have pictures and videos of the kids on there that I probably won't get back. Not to mention the calendar. That will teach me to rely too much on technology! Ug.

Our Beautiful Sun!

On our walk this morning Beth and I happened to turn around to look down one of the hills we were walking up and we saw a beautiful red sun. The smoke from the fires in eastern Oregon combined with early morning fog blocked enough of the sun's light that we could look directly at it. I quickly sent a text to Rob to get outside with my camera and get a picture. This is what he got:

One Last Hurrah-Beach Fun!!

Yesterday promised to be a gorgeous day on the beach so we got up and got our stuff done and headed out. We knew we were going to hit the beach at high tide so we opted to go into Seaside first and do our trinket and taffy shopping. I have to go to this one place to get taffy, they make the best. Elizabeth found a cute pair of ear rings for herself and a friend. The boys found a shop that deep fat fries EVERYTHING so naturally they had to get something. Jonathan had the deep fried snickers bar which wasn't too bad, and Nathaniel got the deep fried twinky that was wrapped in bacon. Oh heart attack! He loved it, I thought it was just ok. Tasted like a sweet corndog. We saw one of those guys that likes to dress up like a statue and dances or does tricks. Seth honestly thought he was a robot because the guy had something that would whir like a robot when he moved. We gave Seth a dollar to put in the bucket and the guy was nice enough to put Seth on the pedestal and let us get a picture of the two of them. Seth loved it! After all that we headed out to a spot on the beach and just hung out for a few hours. I hung back under the umbrella shade with the two older boys and the baby and Rob joined the other two in the water. Meredith loves the sand! She couldn't get enough of it :) The ocean...not so much. I walked her down to talk to Rob and she started whimpering then screaming the closer we got to the water. Poor thing. She did kinda get over it and spent some time down by the water with Rob but after a bit she ended back up in the sand with me and the boys. All in all a great day and was nice to get away one last time before school starts back up.

This is how my teenager enjoys the beach now, watching a movie on my iPod :)

Quality time in the sand with her big brother.

Rob could dig in the sand for hours and hours if you let him.

Still watching a movie.

Meredith goofing off while Nate continued to, yep you guessed it, watch his movie :)

She still walks with her arms up, make me laugh every time!

Public School VS School at Home

Well, we had to make a hard decision this past week. We have decided that Seth will stay home with me this year for kindergarten. I will be teaching both Elizabeth and Seth this year with the help of Connections Academy. We had him registered at the local school and were all excited for him to attend his first year up there. BUT, 2 weeks ago I received a notice that said something about welcome to our PM kindergarten class. Just a few days before that I was told Seth had gotten a morning slot which is what we wanted, which is what was going to make time with Elizabeth so much easier. That started the process of phone calls that led to discouragement and more frustration. Our school had to lose a kindy teacher, leaving the remaining teacher with 70+ students to manage. This of course led to only two kindy classes being taught and Seth was moved to afternoon. At last count his class was up to 38 students. Which to me seems like a nightmare. I don't care how good of a teacher you are, that is insane. We called the school to see what could be done, we called the district to complain, knowing none of it was going to do any good but we had to try. No good, this poor teacher is still stuck with 70+ kids and we were stuck with a PM time that was really inconvenient. We did hear the district was kind enough to give the teacher an aid, and then they gave her a permanent substitute teacher to work with her. And I heard a rumor last night that a teacher who retired last year will be offering her services as a volunteer this year. Still, not good enough. Too many kids, and really I start to get claustrophobic just thinking about that many kids in one classroom and then 4 adults trying to manage them all. NO THANK YOU!
When we made the decision in the spring to send him to the local school it was based on factors that, at the time, were adding quite a bit of stress to our lives. At that time I was SURE I couldn't handle starting elementary over again, especially where Elizabeth is now at a point where she is more independent. But now several of those stress factors are gone and after getting angry enough I realized I was more than happy to have Seth home with me this year. Fortunately, I feel I have options and do not need to sit around to wait and see what happens with the school and district.
As it sits Seth is almost completely registered with Connections so we should be getting his books in the next week or two. I'm excited, I haven't actually ever done kindergarten at home. The older boys did it up at the local school and Elizabeth skipped it. So something new to try this year :) Seth was slightly disappointed when we talked to him. However, after explaining the situation the best we could and why we felt he should be home, he ran upstairs and very excitedly told the other kids that he was going to get to stay home to learn with Elizabeth. Very happy the disappointment didn't last long!

Pictures from the last few months

Well, has been too long. Rob got me this wonderful new camera for my birthday in April. I LOVE it! Unfortunately it can hold like thousands of pictures so I haven't had to dump it yet. Which means I haven't gone through all the pictures. I'm going to attempt to now and just throw some pictures on here from the past 3 months so you can see what we've been up to :)

At the Beach over Memorial Day weekend

Jonathan performing at the Concert in the Park Day for  band

She hates touching grass with her feet

Seth learned to tap from a friend at church

It also included some ballet, these are the cuties he took class with :)

Zoo time!

 
 

Just learning to walk

Park day

 

Elizabeth and her cute friend Leila