Wednesday, May 22, 2013

May Clinic Follow-up

I promise, I promise, for all of you patiently waiting to hear the results from the Dreams for Olivia event, they are coming and as soon as I get them, I'll post about it. For now however, this is an update on Olivia's culture and lab work results from clinic at the beginning of May.

Thank the Lord, we had yet another good culture! Olivia cultured normal flora and a light growth of staph, so no nasty stuff which I thank the Lord for every single day. Since she is healthy and the staph isn't giving her any issues right now, we will not treat it with antibiotics so that is the most awesome news ever. I really want to frame one of the follow-up letters from the CF clinic which stated "Olivia has minimal lung disease". That is the best thing we can hope for, to keep her lungs good and healthy until we have a cure.

Her lab and blood work came back mostly "normal" too. She has been taking Vitamin D since her last lab work in May of 2012 but her values are still low so we increased her daily dosage of that even more. Just another reason on my ever growing list of  "Why we should move out of MN" - Reason # 10: Winters that last 6 months out of the year it seems resulting in a lack of exposure to sunshine and vitamin D. Aside from that, everything else was okay, so this too is a very huge blessing, and nothing we ever take lightly, for in the back of my mind, I'm always waiting for that other boot to drop when she cultures something not good, especially since I was told "it's not if, it's when".

Thankfully, both the kids are finally healthy. Landen graduated from preschool yesterday so we should be clear of sicknesses now for awhile which is a huge relief. Olivia's appetite is okay to so-so, we are on week 2 of the periactin but I have already started to see her appetite dwindle so we will likely stop it for a week and start back up again and hope for some continued weight gain. She has gained almost a full pound since clinic at the beginning of May, but we've seen this pattern before, where she will gain a good 1-2 lbs and then taper off, lose some etc, so we still have a very long ways to go and a lot of butt busting to do, to try to get her to gain the 3 lbs we've been tasked with before clinic in August.

But for now, things are very, very good. Olivia is finally healthy after enduring a terrible winter and spring of being sick back to back. She is gaining some weight and summer is soon to arrive here, (despite the 47 degree day we had today), so we'll keep on keeping on and are so looking forward to enjoying a fun filled summer packed with as many fun things as we can. Life is so short, summer goes by way too fast, so we are gearing up to make every moment of it count!


Monday, May 13, 2013

Expectations, Mother's Day, Dreams For Olivia (Part 1)

It has been a crazy few weeks around here. We've had swim lessons for both the kids, doctor appointments, dental appointments, lots of errands and shopping to do . . . the list goes on and on. On a given 'normal' weekday for us, Jeff goes to work and the kids and I spend many of our days at home, staying in our routine and just enjoying being the homebodies that we are, aside from the Tuesday and Thursday afternoon's that Landen attends preschool. Anytime, that I am out of my funk and normal routine, it is a cause of chaos and anxiety, it just is, it's how I'm programmed to run. Our days are much the same, I have a monotonous routine that I thrive on and in turn the kids to do. We roll with it, we do what we need to do each day all while playing, having fun, getting in all the required meals and snacks to give Olivia the best chance to thrive and of course fitting in her two treatments/day (or in our case, 3 treatments/day for the past 2 months). It works, to some it may seem boring, but no 2 days are ever the same around here, we make the most of out of it and find new and fun adventures to do each and every day. Plus, it makes the days that we do venture out to the store, school, swimming lessons, or anywhere else, that much more special, albeit sometimes chaotic - for everyone!

Our kids are by no means perfect or little saints but they are for the most part, pretty well behaved when we go out, no doubt I believe because it is a treat to them, something different, something out of routine. The simple fact alone that the kids can enjoy looking out the car window on a drive to wherever enjoying nature's backdrop and taking it all in, is special. To be able to find the beauty and awe in the simple things, makes me a proud mama. Anyway, I digress, but the point being, our life is crazy in itself without adding in days jam packed with activities and outings.

On most any given day, I don't have too many expectations, aside from making sure all the CF stuff to keep Olivia going gets done, that's pretty much it. Oh, of course, I have expectations when it comes to little things like the kid's behavior, eating at meal times, things like that but in all reality, when it comes to other things, I don't have many expectations and those that I do aren't set very high. I like it this way because if I don't expect much that's one less thing to be bummed out about at the end of each day.

This past weekend was a busy one and one that I did have expectations for. On Saturday morning we headed down to Windom for the Dreams For Olivia event. I expected that we would have a good turn out at the event, which we did. I expected that Jeff and I would be able to enjoy our time away from the kids for a few precious hours as this literally only happens about once every 1 to 2 years, which again we did, and I expected that no matter what, everyone who came out to the event had their hearts in the right place and were doing it to help raise money for the CFF. The day was cold, the wind was insane for trying to golf but that was about what both Jeff and I expected so we weren't too disappointed there. Things can always be worse so we were just happy that it wasn't raining! Jeff and I both had one too many cocktails, but it's been a very long time since we were able to enjoy ourselves like we did on Saturday, we genuinely had a very good time. Of course one of Tyann's main goals through this event is to raise as much money as possible for the CFF but time and time again, she has told me that she wants it to be a day for us to enjoy ourselves and to have a good time, and I can definitely say that we succeeded there. There are so many hilarious and fond memories that are now added to my memory bank from Saturday that will be moments that bring a smile to my face or cause a laugh to escape at an unexpected time as I recall the fun, the humor, the laughter and the blessing of it all from the event on Saturday and for that, I am forever grateful.

I've said it so many times before and will say it again, CF is hard. It is constant, it is a daily battle and one that we must continue to stand up to every, single day of our lives. CF has caused Jeff and I a lot of anxiety over the past 3 years, it has made us anxious, nervous, stressed out people. It is what it is, we deal with it, we roll with it the best we can and we continue to push through day in and day out. In the eyes of some we may seem to be overbearing, we may seem like we take things to the extreme, we may seem just plain crazy in things we say and do but the honest to goodness truth is that both Jeff and I have the biggest hearts possible when it comes to our children and all things we do, we do out of love. We would both lay down our lives for either one of our kids if we had to and could. We'd both take the burden of CF off our daughter in a heartbeat and place it on ourselves. There is not one thing we would not do for Landen and Olivia, we love them with a love so deep and so strong and at times so much that it hurts. So yes, as the weeks turned into days and hours and the event became closer and closer, both Jeff and I became more anxious and stressed, it is how we are. Yes, we both worry about the what if's of the day and so many things that are so insignificant in the big picture but are a big deal to us at the time. But come Saturday, as we jumped into the golf cart and set out to golf with a group that was out there to support the CFF on behalf of our daughter, all the worry and anxiety washed away and we partied it up with the rest of the bunch. Like I said, it's very rare for Jeff and I to get out for a day/night without the kids and on Saturday, we lived it up. So a huge thanks to Tyann, AJ and Hilary for putting on a great event and allowing us the opportunity to have a great time, for a great cause and for just a few precious hours to really forget about CF. We are still tallying up everything and there are so many people to thank so in the days/weeks to come, I will post all the details, photos and earnings from the event (Part 2).

On to Mother's Day . . .

Back to expectations. . . Mother's Day is great, mom's are super duper special, I love being a mom and I absolutely love the homemade gifts that I get from the kids on Mother's Day, those are purely awesome. However, my personal expectations for Mother's Day are never high because Jeff makes a point to tell me that I am the best mom ever so many days throughout the rest of the year and Landen and Olivia tell me every single day how much they love me so I don't need a single day to feel loved and blessed, I get it year round. I have a wonderful husband who loves me to the ends of the earth just as much as I love him and I have two little kids to remind me how much I mean to them daily and that's all I need.

Yesterday, I didn't expect much. Since Saturday was the golf tournament, we weren't at our house, things were busy so I knew that this year's Mother's Day wouldn't be like those in years past where the kids and Jeff pampered me but I was really okay with that. As a mom to a child with CF, spending the Mother's Day weekend with people who are fighting for a cure for my daughter, it doesn't get much more special than that. Add that to the fact that Landen had been telling me all week that I'm the best mom and that he loves me so much . . . I had been pampered all week long. What I did expect was that Jeff and I would have a good time on Saturday, we did and I expected in turn that Sunday, Mother's Day would be more of a recovery day for both of us, and it was. We spent the day driving back home, resting, trying to get back in to our routine. I know Jeff felt terrible since the day didn't go like he had originally planned but that was okay. I was just glad that he was feeling better by days end and thankful that we were both able to let go the previous day and have a lot of fun as we laughed and reminisced about the fond memories that were created.

As if all of that wasn't enough, add these couple things into the mix and I'd say this will go down as one of the best Mother's Day ever:

Landen's Gift to me that he made in school

Absolutely love this!

His teachers had made up a photo frame that was decorated with puzzle pieces and had a photo of Landen holding a sign that said "I love you to pieces!". One of the best gifts ever!

Jeff's parents George and Pam gave me a gift card to do some shopping for myself which I absolutely love and they along with Aunt Jennie graciously watched Landen and Olivia on Saturday while Jeff and I were away at the event. Thank you!

My sister Darci brought me over a gift with this sweet card yesterday, definitely made me cry:


Jeff is still putting together the gift that he and the kids got me so I'm anxious to see that, but like I said, Jeff, Landen and Olivia let me know every single day how special I am and that's all I need, everything else is just the added cherry on top! 

So here goes, Mother's Day weekend 2013:
1. Spending Saturday with folks fighting for a cure for my daughter and raising money for the CFF - beyond amazing.
2. Having my husband tell me how much he loves me and how amazing of a mom I am year round . . . I am beyond blessed.
3. Getting gifts from George & Pam and my sister Darci letting me know that they all think I'm doing a great job as a mom - seriously means so much.
3. Having my son and daughter tell me every single day that they love me - absolutely, without a doubt . . . priceless.

 . . . and for all of that that - I must be doing something right!

Stay tuned, (Part 2) of the Dreams For Olivia event with lots of details coming soon.




Tuesday, May 7, 2013

May CF Clinic

Yesterday, after we spent 2 hours at the CF clinic for Olivia's appointment I told Jeff that "one of these times I need to bring the camera and take photos of the appointment so that others can get an 'idea' of what they are all about". They are so much more than a "well-check" and will get more involved the further along this journey we go.

We started out with the ever dreaded weigh in. Olivia lost a full pound from where she was at 3 months ago in February - so not good. She has grown an inch since February so at least for now, her body is able to continue to grow taller without adequate weight gain. Of course a poor weigh in just sets the stage for the rest of the appointment/day. We proceeded to our room where the nurse checked her oxygen level, blood pressure and then her temperature, all which were within normal range and finished off with a throat culture. Next up was going over the past 3 months with our nurse practitioner. *Side note, I really, really love our CF team, especially our nurse practitioner, she is great and has been with us from the very beginning. She cried with me at our very first appointment and is one of those people who truly is in the medical field to make a difference and for all the right reasons. She also can read me like a book. She immediately told us to calm down and relax. She knows how hard we work to get Olivia to gain weight and be healthy and how much we fight through every single meal, every single day to get her the calories she needs. She knows that I will give it my all until the point of breaking to try to avoid a g-tube for Olivia. We discussed Olivia's weight loss due to the reality that she's been sick for a full month with back to back viruses added to the weight struggles she already endures because of CF. After rehashing the past 3 months and how Olivia is eating, sleeping, playing and doing her treatments she told us that we need to get a clear picture of Olivia's ability to gain weight during a healthy period and go from there. So our goal for the next 3 months is for Olivia to gain 1 lb per month so she has a 3 lb weight gain when we go back in August. We will try. We will see if it's possible and if not then we will succumb to the g-tube. It is what it is. I've realized this. Of course we will give it our all and see what happens but the reality of it just may be that Olivia's body is not able to thrive without a g-tube at this point. CF may be wreaking too much havoc on her pancreas to allow her body to absorb food and gain weight like she should be able to even with all the medicines and vitamins she takes. CF is a beast, that's the truth and I thank God that if we need a g-tube it is an option because to think of the alternative, that this disease would literally starve her death - is earth shattering.

Next we met with our respiratory therapist to go over treatments, vest fit, meds etc. followed by a brief meeting with the social worker who always inquires as to how we are doing. This time she gave both Landen and Olivia each a children's book about cf. It'll be a good teaching tool for both of the kids, especially Landen as he is really beginning to realize that CF isn't "normal", Olivia's "stuff" (what we call her treatments) aren't things that all little sisters do. After this it was time for Olivia's annual studies which included first a chest x-ray followed by lab work. Olivia is a trooper when it comes to x-rays and these will be routine going forward as part of her annual studies. At birth she had too many x-rays to count when she was in the NICU and she's had a few as a toddler due to her broken collarbone last fall so she did great getting these first photos done as part of her CF care. She stood up on the platform, took a deep breath and they took 3 pictures of her chest. We then reviewed the x-ray with our nurse practitioner - she said her lungs look normal and her diaphragm is nicely curved. She did notice some mucus plugging in her right lobe. She said this is pretty common for children with CF around this age and that it's nothing to be concerned about. Of course Jeff and I were/are concerned. She said it could be due to the illnesses she has and had or it could just be "normal". Again, a reminder that no matter what we do, what precautions we take, how many treatments we do, CF is always there, the sticky mucus doesn't go away, it's constantly wreaking havoc on her body. We will be able to see if this mucus plug is "normal" when we do her annual studies next May and for now will try to "not worry" about it.

By this point we were almost done and had two antsy children to tend to but had one more stop to make. We headed down to the lab and thanks to the numbing cream they put on Olivia's arms for the blood draw she again did really good with this. She teared up just a little bit at the end but it was nothing like the blood work we had done last year where she literally screamed bloody murder. This is pretty impressive considering they took out 11 vials of blood yesterday. I seriously wondered if she had any blood left! Finally, 2 hours later, it was hurry up time, pick a prize from the treasure chest for a job well done and time to go home.

So that set the stage for the rest of our day. CF clinic days are exhausting and stressful, traveling 1 hour each way to get there, add in the 2+ hour appointment and it's no quick deal. Finally settling in back home I wanted Olivia to rest and take a nap, after all, she had a very busy morning and she's still fighting off her most recent illness. Of course she would have no part in that. Meanwhile, Landen wanted to play his favorite Angry Birds games on our tablet while Olivia was "napping" and as he was proceeding up the stairs to his room for quiet time, he tripped and fell, thankfully he didn't hurt himself but he did manage to shatter the screen of our not even 6 month old tablet - so much for Angry Birds.

Needless to say, it was a long day and I was sure glad when my head hit the pillow last night.

And today we are all blessed with another day. We have a lot of work to do going forward but we always do, CF never stops and neither do we, we work and fight it every single day. So, we keep on pushing and muddling through trying to control CF as best we can, all while trying to not let it overtake our lives. We nervously await all of Olivia's lab work and culture and pray for good results. As I sit here with tears in my eyes and vividly recall the x-ray of Olivia's lungs yesterday and the sticky mucus that invades them that may just be considered "normal" now, I continue to pray even harder for a cure and will continue to do everything I can to raise money for the CFF to make it a reality. CF is so, so hard and we can't stop it. It's progressive, each year the disease will do more and more damage to Olivia despite our best efforts to control it. Some days I really, really despise CF and I hate all that it does to my little girls body.

Just coming off of a really hard day yesterday, I am grateful that we have the Dreams for Olivia event this weekend. This is something I can do, this is a way that I can fight back, this is a way that I can kick CF's butt, if only for a day - but I'll take it. I pray that the event is a success, I pray that we raise a good amount of money to get us that much closer to that cure. Every single day, I fight this disease right alongside Olivia. Day in and day out I fight, and this is why:


Thank you to everyone who fights with us.
 Pray for a cure and help make it a reality by supporting the CFF.


Friday, May 3, 2013

*NEW* Team Olivia T-Shirt's & CF Awareness Bracelets for sale

We will have a new "Team Olivia" t-shirt for sale beginning May 7th at Enspired. These are being sold in conjunction with the Dreams for Olivia event that is being held next Saturday, May 11th, 2013.
The t-shirts are blue in color (similar to the color in the photo below) and are $15 each with all proceeds benefiting the Cystic Fibrosis Foundation.
Logo designed/protected by Crystal Jensen.

Also, on sale now at Enspired are bracelets made by Josh Fields. The bracelets come in all different sizes, the cost is $10 each, $5 from each sale goes to the CFF. 

To purchase either of these items, swing into Enspired located in Windom, MN (beginning May 7th for the t-shirts, now for the bracelets). The t-shirts will also be sold at the Dreams for Olivia event next Saturday. If you are interested in purchasing a t-shirt but are not able to attend the event or stop into Enspired, email me and we can arrange pick up, payment and shipping options if needed.