Saturday, September 27, 2014

I Lived

Olivia, Landen and I have on many occasions cranked this song up on the radio as we are cruising around in the car, and belted our hearts out as we sing along. I liked this song a lot before I saw this video yesterday . . . 




. . . now I love it so much more. 

This is super, awesome awareness brought to the CF community by One Republic and their song I Lived . . .

. . . and an even bigger reminder that although I want to coddle Olivia and wrap her in a protective bubble at times to keep her safe from harm, I also want her to say that she truly did live and had a very full life that wasn't defined or limited by cf,

. . . that cf was always there, always present but it was just along for the ride, not the deciding factor in what she could or couldn't do.

Such a huge thanks to One Republic for generating more awareness about CF and the CFF's mission for a cure. I'd like to give them all a super big CF Mom hug if I could . . .

. . . and we will definitely keep singing along every time we hear this song, 

. . . probably a little bit louder now!



Friday, September 19, 2014

G-tube: Proving its worth

We are just shy of 7 weeks since Olivia had her g-tube placed. As the hours roll into days and the days roll into weeks, it seems like so much longer than just 7 weeks ago. For how rough of a start we had in the beginning to now having most of the issues ironed out and having the g-tube be another part of our daily CF routine, it certainly feels like we've been at this for quite some time.

When I started out 7 weeks ago, flushing the tube, priming the pump, crushing the pills, attaching the tubing, taping the belly, the process although relatively *quick* was still laborious and added more time to our bedtime routine. Even after I'd walk out of Olivia's room, I'd run through the process in my head to make sure that I didn't forget to do any of the steps for her nightly feed, often feeling like I had forgotten something. Now we pretty much have our routine down, the process goes quicker, the nightly waking up to beeps are attended to faster, a bit less sleep is lost, yes, we are definitely gaining ground.

Her button is continuing to heal fairly well, she's had some granulation tissue forming around the tube itself that we are now treating with a steroid cream, applying it 4 times a day to help with that. Most all of the extra marks and incisions have healed so her belly is back to normal with just the button remaining.

Each night is different. Many nights as Olivia tosses and turns, I'm awoken two, three or more times per night to the beeping of the feeding pump to attend to. Some nights, I awake to Olivia crying. Some nights I awake to Olivia yelling, "Mom, can you take off my tube", in the past 7 weeks I don't think there has been but one night that I haven't been awaken by something. 75 mL/hour is the goal feed each night for Olivia. Jeff and I adjust this as necessary. This goal set by clinic seems to be the very maximum amount her stomach can handle. When we've had her at the goal amount, we've dealt with her vomiting in the middle of the night, we've dealt with her vomiting in the morning when she gets out of bed, we've dealt with her having bad stomach pain and gas from the overnight feed, we've seen a full array of issues already. Thus, we adjust the volume of the feed accordingly, to what works for her. As of late, I've decreased the total volume/night, and she seems to be tolerating that better. This past week as she was hit with a cold, we decreased the rate further due to the added drainage of being ill. Despite what clinic wants and sets our goal to be, that is just that, a *goal*, and Jeff and I know that any amount we can get in her is better than not having it run at all. Running at full goal and then vomiting most of it up in the morning . . . is pointless. So it's been a learn as we go process and always will be I am sure.

I am very pleased to report however, that the g-tube is helping tremendously. A little over 3 weeks ago at our CF clinic visit, Olivia weighed just over 39 lbs. Today when I weighed her, she weighed 41 lbs 10 oz. This is by far, the most weight she has ever gained in 1 month! Jeff and I can both see it too.  She looks better, her clothes fit a little bit snugger, she seems to be more energetic and the cold she just got was very minimal for her compared to the many she's had in the past. Of course I know that illnesses will still hit her hard and we are only just entering the nasty sick season but at least now she will have what she needs to help her fight them off.

Again, the g-tube was something I didn't want . . . ever. But now, that the worst seems to be over so far regarding it, I'm relieved and glad that she has it. Yes, it is an external reminder of CF, staring me in the face every time I see Olivia's belly. It adds a whole new kind of stress - we still struggle during the days to get her to eat by mouth, the meal time stress is still there, but so it goes. CF is stressful, no doubt. CF is hard. It's a challenge each and every day, but I thank the Lord that we have cleared a few more hurdles along our journey and that we have another tool that is proving it's worth to help us overcome all that CF wants to take away.

Olivia will be in kindergarten next year, this terrifies me on so many levels. To somewhat prepare, we enrolled her in a gymnastics class this year to get her use to a smaller (less germy) setting where she is around other kids and has to listen to a teacher and follow rules. She's only just begun but she is doing well, she seems to love gymnastics and looks forward to it each and every week.




. . . and next up, in less than 2 weeks now, our little lady will celebrate her 5th birthday. It is so hard to believe it's been 5 years. She wants a Frozen party (check) and a new Elsa dress (check), thus it's sure to be a fantastic celebration indeed. 

Following that is our most favorite time of year, Halloween. 

We have so much to be thankful for and so much yet to look forward to. It's definitely been a crazy, full of ups and downs, life changing and continued learning 5 full years. Times of sadness, and difficulty but also so many amazing and happy times. We have so much to be grateful for and for each added year we are continued to be blessed with, we count our blessings and thank the Lord for all we do have. Thus this 5th birthday celebration is definitely something to rejoice, it'll be a party fit for a princess indeed. 

Thursday, September 4, 2014

That's a Wrap . . .

Phew, I can't believe summer has come and gone, it seriously seemed to go by in the blink of an eye. As I looked back through photos from the past 3 months, many memories were made, good times were had . . .

After school let out and we celebrated Landen's 7th birthday in June, the kids started a week long swimming lessons class. This year we enrolled the 2 of them in a private class with their own instructor. This proved to bemuch more beneficial and the kids learned a lot. Olivia was scared to go under water but clearly the swimming lessons helped since she's been swimming like a fish, under the water in our pool ever since . . .


We made our annual trek back to the strawberry patch this year, Daddy was able to join us this time and we came home with pails of delicious goodness . . . 


At the end of June, we had a birthday bash celebration for all of the cousins on my side of the family. We celebrated the birthdays for all 6 kids complete with presents, pizza and a bounce house. 


As luck wouldn't have it, it got super windy and rainy but thankfully the kids were able to enjoy enough bounce time until they were red in the face - before the winds and rain came. 


July rolled in and we had a quiet 4th of July weekend at home. We were finally able to enjoy using our motorhome rather than fixing it and working on it . . . 

we camped out in the back yard, set up and enjoyed time in the new pool and finished it off with fireworks . . . bang!


The weekend after the 4th of July we headed up to the lake for our annual 10 day vacation of sun, sand and fun. 

We enjoyed tubing, fishing, swimming, catching minnows and spending time with family.



After our week of fun and sun while on summer vacation, the kids were able to enjoy a few days with cousin Braelyn. The few days this summer that Braelyn made it over to play were a far cry from the summer of 2013 when Braelyn spent much of the summer at our house so the kids thoroughly enjoyed it. The weather was perfect for water balloon fights . . . 


and swimming and splashing in the pool . . .


At the end of July Landen and Coach Dad finished up summer t-ball. 


August rolled around and we enjoyed another camping trip in our motorhome. We went to a county park about 45 minutes from home so it was a short drive, the weather was nice and we all enjoyed it. 


Our campsite was damp and heavily covered with trees which made for a great place for the kids to catch frogs, along with playing ladder golf, playing bean bag toss, bike riding and swimming. 


White kitty even enjoyed some time playing ladder golf.

Next up Olivia had her g-tube placement surgery, which I'll spare adding more photos and details about here since I have a few posts dedicated solely to that. 

After surgery and at the recommendation of our medical staff to not use the pool while Olivia's surgical and button sites were healing, we were told pools/lakes were off limits but sprinklers were okay. So on the warm days that followed, the kids enjoyed cooling off in the sprinkler . . . 


. . . and after Olivia's surgeon told her at her 3 week post-op follow-up that she was clear to go back in the pool, the kids did just that and enjoyed every day they were able to spend even just a little bit of time in the pool.


At the end of t-ball, one of the grandparents of a child on the team that Jeff coached, gave him 4 tickets to a Twins game. I had been wanting to see the Twins play at the new Target Field for quite some time so this was the perfect opportunity. The weather was beautiful for an outdoor baseball game in Minnesota and we all enjoyed it. 


Both the kids sported Twins apparel to showcase the true fan in them. Olivia even sported red, white and blue braided pigtails.




Go Twins!

One of the incentives we told Olivia about as she was getting ready to have her g-tube surgery was that we would go to Build a Bear when she was feeling better. A few weeks after surgery, Darci, Braeyln, Landen, Olivia and myself headed down to Build-A-Bear at the Mall of America. This was Landen, Olivia and my first time there. 

Once we got to the mall, we fueled up at Bubba Gump Shrimp.We also made a stop at Lego Land; Landen was in heaven and picked out a lego to bring home. 



At Build-A-Bear, luck would have it and they had Treasure, Ariel's kitty so Olivia built her, complete with a purple and teal sequin dress. Landen built a cute little dog that he named Pupcake and dressed in a shark hat and Star Wars p.j.'s which was perfect for him and all things Landen. 


We finished off our day with some frozen yogurt and headed home with our treasures. Such a fun day and we will definitely head back to Build-A-Bear again.


We were able to use our camper one last time over Labor Day as we headed back up to the lake for the weekend to say goodbye to summer and to celebrate birthdays for the girls. Makayla and I share a birthday, she will turn 5 next week, Auntie Em celebrates her birthday next week also and Olivia will turn 5 on October 1st. So for the past few years we have made Labor Day weekend a birthday celebration at the lake. This year was no exception, the girls enjoyed a Frozen birthday celebration at the lake. Olivia loves all the new gifts she received and has been keeping entertained with her new treasures ever since. 


Hard to believe my baby girl will be 5 in less than a month . . .

Tuesday, Landen headed off to 1st grade. As expected he was very nervous but once he got to school and found his room he seemed a little better. His biggest fear is not being home and missing mom *sigh* . . . 

I love my bud and miss him too and definitely feel loved to hear him say that he misses me but man oh man my heart breaks a little bit hearing him choke up and see the tears. I'll be happy when he is finally settled into his new routine and enjoying school. 



And that my friends, is a wrap, summer is (unofficially) over . . .


*tear*