Monday, September 24, 2012

and so it begins.


Ugh. With the cooler and much more fall like weather we are having here and Landen being back to school, I knew it would only be a matter of time until sicknesses lurked back into our home. They made their germy little way back in last week. Landen came down with a cold and then Olivia came down with it a few days later. No fun. It didn't seem too bad for Landen nor did it slow him down so that was a good sign we figured for Olivia, but not the case this time. She hasn't managed quite as well. She's been a lot more congested and snotty. Saturday morning I woke up to her crying and coughing. The night is always the worse for that thick icky mucus so I ran to get her and she proceeded to have a coughing spell and vomited out a bunch of thick nasty mucus on me. Poor thing, I felt so badly for her as it always frightens her when she pukes. Thankfully she got it out though. Thus, we've amped up her treatments to 3 times/day and are trying to get her to rest as much as possible all while continuing to push foods for her lack of weight. So it's been a stressful weekend, busy and hectic, but certainly nothing we haven't been through before, numerous times.

In regards to Olivia's Periactin, she had been doing better with her weight gain and we did notice that it was increasing her appetite after we got to the maximum dosage a couple weeks ago. This has been hopeful. When we went to clinic at the end of August, she weighed 27lbs 5oz. In less than a month she was up to 28lbs 11oz last Monday. That's super great news for her as there have been many times where she hasn't even gained 1/2 of a pound in a 3 month span so this is huge but we still have a long ways to go. She's still about 3lbs under the 50th percentile mark where she needs to be so we have to hope that she keeps gaining. Of course now with her illness, we will be set back as she more than likely has lost weight. That's what makes this journey with her weight so difficult. It always seems you take one step forward and two steps back, it's frustrating and saddens me because it is such a tremendous struggle for her.

This is the start of her 5th week on the Periactin but only her 3rd week on the maximum dosage so we will continue with it until we notice her appetite has decreased and then we will stop it for 3-4 weeks and start back up again. Her appetite has been very poor the past few days as a result of her cold of course. I've had a very hard time just getting her to drink anything, let alone take bites of food. I totally get it, who the heck wants to eat or drink when you feel like crap and are so congested that you can't breathe? It sucks so much though because we have so much ground to gain and can't afford any setbacks such as this. But so it goes, we will continue to do the best we can and push as hard as we can without making food her enemy and see what the next few weeks/months bring before our next clinic visit in November where we will talk about the g-tube once again.

I'm not going to get too down now, after all, Olivia's 3rd birthday is a week away and that's nothing to take for granted so I can't help but feel happy as it nears. I can't believe she will be 3 already. There are so many memories, good and sad from just 3 years ago that are still so vivid in my memory that it doesn't seem like they could have been near that long ago. So it is an exciting time for Olivia as she gears up to turn 3. Birthdays are bittersweet; thrilling that she is another year older and has done well over the past year but sad as another year quickly flew by, all too fast and with this disease one can't help but always wonder in the back of their mind how many more birthdays will come.

Just to show how much of a big girl she is, below is a video of her swallowing her enzymes whole. This is awesome, I'm so proud of her. We took a long road trip yesterday and got to see a lot of fall colors around here, it was very pretty. Beings we were in the car so long, we also took her vest and neb along with our handy dandy converter and were able to do treatments while away, that was awesome to have the freedom to go and do something fun all while being able to keep up with added treatments, got to love technology! Back to the enzymes though, there is a correlation, since we were in the car for so long, I thought it'd be much easier to hand her the enzymes to swallow rather than try to mix them in applesauce and lean into the back of the car to give them to her so I tried it and she did it, put 3 of them in her mouth, one at a time followed by a swig of water and got them down. So last night for her bedtime snack I tried it again to make sure it wasn't a fluke and she did it again so very cool and this for sure will make things easier for us all, super cool. She always amazes me. Now if I can just get her to not be deathly afraid of the toilet to be potty trained . . .

Click the photo to watch a video of Olivia swallowing her enzymes.

Tuesday, September 11, 2012

The End of Summer, Welcome Fall!

Oh how sad it is to see summer coming to an end. On a good note though, we had so much fun and did so many awesome things so at least we made the most of it while it was here. As I look back on all the photos of the summer and think about all the memories we created I have no regrets. Last winter and spring I vowed that we were going to make the most of our summer this year, filling it with fun things, new adventures and of course spending precious family and friend time with those so dear to us that we never ever see often enough.

With Landen in full school mode now this week and our pool all packed up and put away for the summer, despite the 91 degree day we had here today, I feel as if summer is now officially over. However, I'm not near as sad as I had thought I'd be. While summer is by far my most favorite time of the year for many reasons, I am sad to see it exit as it feels like it wasn't too long ago that it just started but I'm also excited to move on and enjoy all the fun autumn memories we will make with the kids. I'm sure the fact that Landen came out of preschool this afternoon and told me "Mom, I had the most awesome day," has a lot to do with the cheeriness I'm feeling. Last year was so hard and ripped my heart out when he struggled to go to preschool and clingged to me for dear life, I'm so blessed that he is one year older, knows what to expect this year and is comfortable going. I know he will enjoy his time there as he gets to experience new things, make new friends, see new faces and just get out of the house and away from me for awhile. As much as I'd love to keep him home with me all day everyday, I know that's not good for anyone and I know this is all a part of him growing up. As sad as I'll be next year when he is off to kindergarten, I will also be happy for him to go out into the world and make new life experiences and make new choices all on his own. Of course the uncertainty of illnesses and germs lurking as school goes back into session still causes me anxiety this time of year, but, having one year behind us already makes it a little bit easier to deal with.

On a super awesome other note, Olivia's sputum culture came back as just "normal flora" so that is by far something to celebrate around here. I'm sure no one besides our family and the other CF families/patients quite understand it all but whenever that icky sputum comes back as all clear and not full of nasty bacteria, we feel so blessed, too much so to even explain, with CF, it's huge. With this clear culture report it has now been 6 months that she's been bacteria free, not even culturing the staph that she had cultured consistently for the past 2 years so we are beyond thrilled.

This week will be the 3rd week that Olivia has been on the Periactin to help increase her appetite. Over the past two weeks we have increased her dosage so she is now at the maximum dose she can be on. We have noticed that on some days her appetite is a lot better than it has been and other days not so much but we are moving in the right direction. We are all hoping that with this higher dose that it'll increase her appetite even more and that she'll be able to pack on the pounds, time will tell. We have our fingers crossed and our hopes up that she will be able to gain weight this way but if not, we will surrender to the g-tube and feel satisfied that we gave it our all, tried as hard as we could and be happy that the g-tube is out there as another tool to help her with her malabsorption.

So, things have been going fairly well around here, after a rough start to the month with feelings of defeat, we have picked ourselves back up, we have continued on with our fight and have and are making the most out of what our lives have in store for us. We are blessed and we are happy that things are going how they are, because like I've said thousands of times before and will for sure say a million times more, it could always, always be worse.

With that, here are some fun photos of how we spent the remainder of our summer:

Cousin Braelyn came over for a sleepover in August, oh my what those 3 don't come up with when they are together, it always makes me laugh and it always results in a photo op. This was apparently some fun with hats.

Landen, Braelyn and I played doctor one afternoon while Olivia was napping. Landen had fun taking photos while Braelyn "doctored me up". For this scene, I apparently had a head injury!

The MN Zoo hosted a dinosaur exhibit this summer and we were delighted to be able to make it out for a day to visit it. Landen loves dinosaur so this was quite amazing for him. He had a blast and could have spent all day there. I wish we could have gone more than once as does Landen since he now refers to the MN zoo as the "Dino Zoo". 


The dinosaurs were super cool, I heard many kids screaming with terror as they looked at them so they were definitely life like. For sure this was a wonderful memory created and one that I'll never forget. 

Landen in his Turtle swimming lesson class. During the first week he was absolutely terrified to put his head under the water and by his final lesson he had no problems putting his entire face in the water and was even comfortable enough that he could float on his back while his instructor let go of him. We are so proud of him.

 
More fun times spent in the pool. Both Landen and Olivia were much more comfortable in the water by summer's end.

We spent Labor Day weekend with Jeff's family at the lake. Olivia had fun playing way up high in the big tree at Grandma and Grandpa's lake place. Grandpa George might have to build a tree house up there as this seems to be a favorite spot for all the grandchildren.


While at the lake over Labor Day we took the kids out fishing and they were catching sunfish and perch faster than Daddy could keep up with putting new worms on their poles. They had a blast and it was fun for Jeff and I to watch them enjoying themselves so much. 

Emily, Makayla and I all have September birthdays and Olivia's is in October so each year over Labor Day we all get together to celebrate them all which is always so much fun. I'm lucky enough to share a birthday with my sweet niece Makayla, which I think is pretty special. This year we all had a blast at the birthday bash.

Both Makayla and Olivia enjoyed their birthday celebration with a Hello Kitty cake. 

Happy Birthday Mommy! My birthday was on Monday. Landen told Jeff that he wanted to get me some flowers that could be in the house and would last forever. So Landen found some cool daisies that even came in his very favorite color - blue, unfortunately I told him they wouldn't last forever but he was okay with that. Olivia picked out the balloon but kept it to herself, she wasn't about to share it. We also enjoyed supper out at a restaurant which was super since I didn't have to cook or do dishes!

1st Day of Preschool - 2012
1st Day of Preschool - 2011

Landen started his 2nd year of preschool today. My what a difference a year makes! He has grown up so much in one short year. Today his teacher told me he did awesome and is so sweet. I love hearing that!
Here's to wishing you a great school year bud.

And finally, next up is Olivia's 3rd birthday, it's so hard to believe 3 years have gone by already. She's turning into such an independent little lady. She's at a fun age and we cherish every single day we have with her. As it is with CF, we thank God for the blessed 3 years we have and hope and pray that we have so many more to come.