Tuesday, December 9, 2014

Today I kinda want to cry . . .

A month ago when we took Olivia in for her first routine CF follow-up at clinic post g-tube surgery, it was a successful appointment. She had gained over 4 lbs - for the first time ever in 3 months time. We were adjusting to life with the g-tube and things were as good as one can expect when cf is involved.

Since she had gained such a tremendous amount of weight and since she was tolerating her nightly g-tube feeds, Jeff and I both discussed stopping the use of the periactin, which is what we had been using for an appetite stimulant, because of the nasty side effects it was having on Olivia. It was mind altering, she was so irritable and it was becoming increasingly more awful for her with each cycle, so we stopped using it. After all, we had succumbed to our final option in trying to get Olivia to gain weight in going forth with the g-tube, it only seemed to make sense that since we now had it that we wouldn't need to force feed, or use the appetite stimulant any longer. We were told the g-tube would alleviate a lot of that meal time stress and weight struggle. 

I guess we never should have let our guards down. 

Here we sit a month later. 

The sweet belly that was beginning to stick out and show . . . 

the pants that we rejoiced in tossing into the "too small bag" for the first time ever no longer are . . .

the chubbier cheeks that were a visual to us of better health . . . 

the stress that was beginning to dissipate with each snack and meal . . . 

it's all gone.

This didn't happen overnight. Olivia has had little to absolutely no appetite at all since she got the g-tube. She doesn't want to eat and I sit her again, day in and day out, spending so much time encouraging her to eat more with little to no avail. I hadn't been pushing her as hard however because we promised her the g-tube would help and that we wouldn't have to make meal times be such a battle. It is painstakingly stressful and frustrating. I knew in the back of my mind, I never should have "relaxed", I wish I'd have listened. 

This is Olivia at the end of October . . . look at those cheeks - she weighed 43 lbs.

and this is Olivia on Thanksgiving Day. . . you can see how much her face has thinned out . . . she is down to 41 lbs - I want to cry. 

Gosh, darn-it! I am so angry and so frustrated and so hurt. Just when things are going okay and just when it seems like you can not let all things CF consume every single part of you and every single moment of every day, it all comes back to haunt you. 

I am so ticked that even with running this g-tube all night long, every night, until Olivia can no longer be convinced to be hooked up to it, the reward isn't there. Today when I weighed her, she's lost over 2 lbs in just a month and this is with using the g-tube every night, between 8 and 10 hours, minus 2 nights when we gave her a break and were visiting Grandma and Grandpa, which lets be real, shouldn't make a difference. Thus as I stated before, just a few weeks after the g-tube surgery . . . the g-tube isn't enough, she has to eat during the day to get in all the calories she needs and that's not happening. I'm at a cross road, do I reintroduce the periactin and live through hell for a week for all of us as Olivia has to deal with all that it does to her and the rest of us get lashed out at? Do I continue to not use it, push harder, add all the stress back in at meals and snacks and see if that is enough? Is there a clear answer?

I don't want to use the periactin and put her through all that it does to her when there is no guarantee it'll work and yet I absolutely will not sit here and watch as she continues to lose weight. We can't up her nightly feeds, she is at the maximum rate her body will tolerate and I for sure as heck do not want to run feedings through her g-tube feeds during the day. We can't force her much more without putting ourselves into a stress induced heart attack. There is no winning at this . . . I knew we would always have issues, I knew this g-tube was never going to be easy and was not a "cure" for the weight gain, and I know that cf doesn't get better, it only gets worse, but man oh man, this just stinks. 

On top of all that and more than likely adding to the issues at hand, Olivia also is showing signs of suffering from post nasal drip, as she tells me the "gagging" she feels makes her not want to eat, understandably so. Post nasal drip is part of CF sinusitis which most commonly shows up around this age - great. Thus a call to clinic is in order to see where to go from here. Thus the stress is back and my Christmas spirit literally just vanished, thus I feel the heavy burden again that CF constantly places on us. 

Oh how I wish there was a cure for CF. 

Thursday, November 13, 2014

Throwback to 2005

A throwback to 2005 . . . 

Happy Anniversary Love


This past Saturday, Jeff and I celebrated our 9 year wedding anniversary. Things have been hectic, with one project after another, the kids have been sick . . . so we didn't do any major celebrating but that is okay. If you add in the years we dated, we've been together for 15 years, and after 15 years, the anniversary is just as special as it was that very first year, even if it is without the big hoopla and celebration. 

Our marriage like any other I suppose, takes a lot of work, compromise, give and take. Add in the statistical facts about the percentage of marriages that fail + the failure rate of those marriages where a chronically ill child is involved, well the odds may not be in our favor. However, we make it work, we roll with it, we deal the cards we are dealt and play them the best we can. We fight, we laugh, we cry, but through it all our love remains strong. Jeff's my very best friend. Even in his quiet nature and disposition, he has this humor that only I get and he can make me laugh until I cry. We enjoy each others company even when no words are spoken. We balance each other out and even when we disagree, eventually we reach a compromise. We are united in our efforts to parent our children to the best of our ability. Their isn't one thing Jeff wouldn't do for the kids and I, he has a heart that is so big and so giving and everything he does, he does with our family in mind. He definitely was a lucky catch, he's one of a kind, I'm glad he's mine and I intend to keep him. When my mind wonders to what life will be like someday, he is always right beside me, sitting in the rockers as we grow old together, finally being able to take those motorcycle rides we talk about but never get around too. He's always there, the two of us together. 

Next year on our 10 year anniversary, we hope to celebrate big. I'd love to go back to the white sands and blue waters where we were married 9 years ago. None-the-less, if it's the beach, or just grabbing a quick bite at a restaurant or ordering carside to go, our love for each other doesn't change. We love each other no matter where we are at or what the circumstances are. 

Cheers to 9 years, and here's to many more to come. I love you.

Tuesday, November 11, 2014

Halloween 2014 - Minion Style



It's no secret . . . we love Halloween at our household, we love to dress up, have a Halloween bash and festive lunch and the kids absolutely love, love, love to decorate for Halloween and make things, "spooky", it's just too fun. I must admit, until I had kids, it was kind of an "eh", holiday, but now, I love it as much as they do!

Carving pumpkins the night before Halloween is a tradition in our home. This year, the kids attempted to draw what they wanted Daddy to carve on their pumpkins and Jeff did all the hard work, with a little manipulation of their drawings where needed, to carve the kids' perfect pumpkins. I think Landen's was supposed to just be a face and Olivia's was supposed to be a robot. The pumpkins we chose this year were so big and so thick, some power tools would have come in handy but Jeff decided to do it old school and carve with a knife. Daddy definitely draws the short end of the stick when it comes to pumpkin carving night as he ends up doing all the work, but I know he enjoys it as much as the kids enjoy messing around!


Olivia had an absolute blast playing in the pumpkin goo and seeds. 


Needless to say . . . a shower was a must after her pumpkin goo fun. 

This year for Halloween, we did it up Minion Style. We mixed it up a bit and had characters from Despicable Me and Despicable Me 2. 


Olivia chose to be Edith, dressed up as a ninja as Edith does in the 2nd Despicable Me movie. Olivia got to go trick-or-treating at Daddy's work during the afternoon and since she didn't have Landen with her this year since he's in school all day, I tied a Minion to her ninja belt with the hopes that'd it make her costume make more sense. It was a hit or miss with Daddy's co-workers. If they had kids and/or had seen the movie, they got it, if not, not so much but all in all, she enjoyed herself and that's all that matters.



Landen chose to be Vector the villan. I think the glasses I found for him, made him look like the cutest little Vector I'd ever seen! Of course his costume wouldn't have been complete without a Shrink Ray, which I made up fairly quickly with some left over cardboard, a balloon and some spray paint. He loved it, it was cheap enough and if it got broken in the process of trick-or-treating, well . . . no big deal. 



Of course Vector had to shrink the toilet, just like in the movie. "Look at the little tiny toilet" and then when it splashes Vector in the face full force, "Curse you tiny toilet".(Olivia's barbie house toilet, worked out just fine for our little tiny toilet).


For Halloween night, I dressed up as Lucy from Despicable Me 2 . . .


Jeff wrapped a black and gray scarf around his neck over his black coat to resemble Gru, albeit with hair. Jeff doesn't get a kick out of the whole dressing up as much as I and the kids do, so unfortunately we didn't get a photo of him with us but we did get a photo of our renditions of Lucy, Edith and Vector. 

And here is the rambunctious duo ready to head out trick-or-treating. It was so blasting cold here on Halloween night that we drove the truck around the neighborhood and made just a few stops throughout, to seriously about 5 houses and that was about it. The kids were fine with the short trip, and ready to go home once they got too cold, especially since we only got 1 set of trick-or-treaters at our house to hand out candy to when we were home, so Landen and Olivia had a full bowl of candy waiting for them inside the nice, warm house.  


And in other Oltmans family tradition news, we had our Halloween themed food lunch on Saturday afternoon in the basement movie room, which is always fun but often more work than I wonder if it's worth, but I like doing it, so none the less it continues.

That's a wrap for this year, wonder what next Halloween will bring . . .

I did get Olivia's culture results, she cultured 2 strains of staph, which is not uncommon for her - light growth on one strain and moderate on the other. Since she's feeling well, no antibiotics will be started for now. It  makes me wonder if antibiotics are ever useful for it because she just got off a 3 week course of bactrim about 2 weeks ago and to already have it again, she either picked it back up already, or she never got rid of it in the first place. With her it comes and goes, it's very common that she cultures it but we have had a few results that have been only normal flora. I know many people, cf or not, are carriers of staph and there are so many worse things she could culture so all in all this is good news.

Next up, Thanksgiving and Christmas is right around the corner . . . time keeps on ticking by.











Tuesday, November 4, 2014

November CF Clinic Update

Yesterday Olivia had a follow-up appointment at CF clinic. She started the morning off with her very first attempt at PFT's, (Pulmonary Function Tests). For her very first go at it, she did a good job. The most difficult part for her was taking in a deep enough breath to blow out the candles on the birthday cake and to blow the rooster across the computer screen. Not to mention that the mouth piece apparatus is rather large for her small mouth but in time, I'm sure she will definitely get the hang of it. She is also on the very tail end of a cold so that I'm sure played a part in how well she was able to breathe as well.





After that we met with our CF team. Olivia's weight was up the most it has ever been in 3 months. She gained over 4 lbs since our last visit in August. This brought her BMI up to the 70th percentile. Olivia's BMI has never been over the 50th percentile, never. The 50th percentile is where they want her BMI to reside around or above so they were very, very pleased by how well Olivia is doing. Jeff and I were beyond happy as well. It's been a long time coming and honestly, before the g-tube was placed, I never in a million years thought we would ever get Olivia's BMI to the 50th percentile, let alone above it. For all the struggles, ups and downs over the past 5 years with Olivia's weight, we are grateful we made the decision when we did to go forth with the g-tube, especially in the wake of how rough of an October Olivia has had with back to back illnesses. If not for the g-tube and all the weight that is lost when Olivia is sick, we would definitely not be in a good spot with Olivia's BMI at all. When Olivia is sick she eats even less, if anything at all, drinks not enough so we are thankful that we have the g-tube as a back up for her nightly feeds and to also give her fluids through to keep on top of dehydration.

We also discussed starting Pulmozyme. This is an inhaled antibiotic approved for children 5 years of age and older. It's a mucolytic so we will use this in addition to the albuterol, saline and mucomyst that she inhales with each treatment currently. The Pulmozyme we will administer every morning before we administer the other 3 medications. Thus even though we are adding in another medication to her morning treatment, the total time of 1/2 hour will remain the same. The goal of adding in this medication to Olivia's daily treatments is to further help clear mucus from her lungs, thus trying to preserve her lung function. So once we jump through all the insurance hoops, we will begin this new medication during Olivia's morning treatments.

Olivia also has issues with post nasal drip when she is sick, to the point that the thick mucus from her sinuses gets stuck in her throat and on her tongue and she gags and often vomits and swallows a lot of extra air while trying to clear it. This mostly occurs at night when she is trying to sleep. We've been instructed to start a nightly saline sinus rinse when she is sick and can continue it daily if we so choose. Our team is hoping that this will help flush out her sinuses before she goes to bed so she doesn't have as much of a problem with the post nasal drip while she is sleeping, causing her to gag, vomit and lose sleep. Beings she is on the tail end of a cold currently, I did try the neti pot saline sinus rinse with her last night and it went so so, I'm sure it'll take a bit of getting use to but I'm hoping that we will see benefits once she finally gets the hang of it.

As far as her nightly tube feeds go, we are to keep doing what we have been doing as things seem to be going well there and are clearly working to help Olivia gain weight. I still run her nightly feed just shy of the goal amount of 75 mL/hour. That 75 mL/hour seems to be right around her tipping point, where she will tolerate it sometimes and vomit it up others. So I usually run it a few mL/hour less and that seems to work better for her and we are clearly still seeing a huge benefit. When she is ill, I decrease it much more so we will just keep on doing what we've been doing and hope it all continues to work in Olivia's favor.

Following our visit with our nurse practitioner we met with Olivia's GI doctor who placed her g-tube. He changed out her g-tube button and showed both Jeff and I how to do it ourselves which we will continue to do here at home every 3 months. When Olivia originally had the g-tube placed, they placed a mic-key button. We had wanted the mini-one button so we were able to place the AMT mini-one yesterday. This button has a smaller profile and it fits tighter around her belly. We've also read that some have experienced a noticeable difference in appetite when using this button as compared to the mic-key button due to the balloon size and shape. Given that Olivia's appetite has been very poor by mouth since the g-tube placement, we are anxious to see if this new button will change that at all. We are also excited by the lower profile of it so that it isn't quite as noticeable under her shirts and is just smaller and less bulky in general. Being a little girl and having something protrude from her belly and having others stare and ask is difficult, so any way we can lessen that, especially as she prepares to head off to school next fall, is a good thing.

We lastly met with our social worker to go over the plan we will need to come up with for Olivia to head off to kindergarten next year. We will be meeting with her again in 3 months to begin to formulate our plan and I was super excited to have our cf team's help in preparing, that was a nice surprise I guess I wasn't expecting.

Phew.

It was a busy and long day but we got a lot of information and a lot accomplished and it was a good appointment all in all. I'm glad the day is over. Now we anxiously await her culture results and pray they come back okay and with nothing nasty. Provided all goes well, we will head back in February.

Can't believe it's November already and the holidays are just around the corner. I have cute Halloween photos to share, so I will do that next time, along with the latest in our little Lady's 1D obsession!

Friday, October 17, 2014

Fall Memories

It's been an absolutely beautiful fall season here in Minnesota this year. Fall is definitely one of my very favorite seasons but so often it seems that we go directly from summer to winter and that harsh winter lasts for about 7 months. 

Okay, so I may exaggerate some,

but . . . 

some years, winter is so cold and so long and it goes on and on and on . . . that it is just downright awful. 

Jeff and I watch Fast 'n Loud regularly and have seen Richard come up to Minnesota about 3 times now on 3 different episodes and each time he asks, "How can anyone live here, or why would you live here? . . . and each time we hear it Jeff and I both respond, "Richard, we ask ourselves that all the time!" 

Anyway . . . I digress, but you get the point, sometimes living here feels like we are living in the frigid tundra for many months, and often I want to pack up and head south with a one way ticket, so this year, we are extremely thankful and blessed for the beautiful fall we've had and the kids have thoroughly enjoyed making the most of their outdoor time. 

An annual Oltmans' Family tradition is to visit the pumpkin patch we've visited since Landen was 1 year old. Again this year we hit up the Pumpkin Patch early in the season to get the best selection and by that I mean biggest pumpkin and best bang for your buck. Giant pick your own pumpkins for just $4 each. 











I was thankful for our visit to the patch early since the entire month of October thus far has been an extreme roller coaster for our family. Olivia turned 5 on October 1st. Grateful that we celebrated the weekend before as on her actual birthday she was dealing with a blockage and getting cleaned out from that. We thought we had cleared the hurdle and then the weekend rolled around and Olivia was back to being blocked up, so much that every time she'd try to eat a mere bite or drink a sip, it would almost immediately come right back up, obvious that she never fully got unblocked earlier in the week. 

A few days later, Landen decides it'd be a good idea to "fly" into the basement, jumping down 4 steps, folding over his foot. Thankfully, an x-ray revealed that it wasn't broken, just sprained. So we spent the weekend with one kid hobbling around in pain and trying to get the other kid fully cleared out from the blockage with extra fluids and miralax. 

Thankfully we had a few zofran tablets leftover from Olivia's g-tube surgery that we were able to give her one of those to curb the nausea and vomiting and were then able to administer fluids through her g-tube. Jeff was sitting with her on the couch, venting her tube every hour or so and it was absolutely unbelievable how much air he was getting out from the tube, no wonder her poor belly hurt so bad. 

We finally really cleared that hurdle and then Olivia got a cold a day later, it started with Landen, passed to Olivia and has in turn gone through the entire household now. This cold seemed mild as she wasn't sneezing much nor did she have a running nose, but I could see that she was swallowing and swallowing and swallowing and trying to clear her throat, continuously. Thus it was a bunch of drainage in her throat, and clogging up her sinuses. This is rather annoying (as I dealt with it the same way myself) but otherwise not such a bad cold. For Olivia, however, it wasn't as mild. She'd swallow so much that her belly was full of air. She was gassy, had terrible belly pains and was puking. When she'd puke it was mainly a huge burp and toot at the same time from all the air she'd swallowed that was trapped in her belly. 

Nothing new, when Olivia is sick she doesn't eat and her weight tanks. This time was no different. She was up to 43 lbs, thanks to her nightly feedings via the g-tube route and w/in a matter of less than 2 weeks now, she is down to 40.4 lbs. With the aggravated belly and added drainage, we had to slow down her nightly feeds, but thank goodness for them because we literally could not get her to eat but a few bites all day long some days, so at least we were able to get some calories in her. However, even at a slower rate and with venting the tube and with miralax, she'd still wake up at night vomiting or vomit during the day. Just this past week, there was one night I was getting her all hooked up for her nightly feed and I began to vent her tube and timed it, that thing gurgled for a minute. I kid you not. One full minute of expelling gas from her tiny belly. To that I say, Ouch, and no wonder she wouldn't eat or drink, how do you when you are full of air?

During the day time, it became so routine, that we'd drive to school to pick Landen up and from the lack of eating, the added drainage and the motion of the car, like clockwork, she'd throw up just as we were pulling into the parking lot. This continued for about 2 weeks on and off while the cold was present. It was a very long 2 weeks. We tried about everything we could think of. I quit taking the car to school and instead took the truck, I moved her seat to the middle seat, I tried to distract her while we were driving, I'd try to get her to eat something, I had the windows open for fresh air, anything to help with her stomach, it was exhausting really. I was seriously thinking she developed car sickness and was ready to sell the car and then after 2 weeks when the drainage had cleared, it has gotten better. 

She has been put on a 3 week dose of bactrim. It wasn't swabbed but at her 5 year well check she was so stuffy that her peds Dr. thought she may have a sinus infection and ordered her an antibiotic. We tried Omnicef at first - awful, she had terrible diarreha, was complaining of muscle soreness, and wasn't showing improvement so after a few days on that, the CF clinic decided she wasn't tolerating the Omnicef and instead put her on Bactrim, since her last culture reported moderate growth of staph and we know bactrim has helped in knocking the staph down or out for her in the past.  Now that she's been on this for a week here and the cold is gone and we've gotten it out of her head that everytime we are in the car she'll puke, things are beginning to slowly look up . . . 

we just have more work to do to get her to gain some of the weight she has lost. 

It's still frustrating, her appetite by mouth is far worse than it was before the g-tube. She eats much, much less. Obviously the cold is going to affect that, nothing new or surprising there but even prior to and after it, she still doesn't have much of an appetite. At least we know she is getting what she needs to gain weight through her tube, it's just so frustrating to see her not eat or want to eat during the day. It's hard to make sure she gets enough water, or enough fiber etc, etc, when she won't take much in via mouth. 

We head back to CF clinic in the beginning of November so lots to discuss there. We will also change out her g-tube button and are going to try the lower profile mini-one and see if that makes a difference in her appetite given its smaller balloon size, taking up a smidge less room in her belly. 

For now, I'm thankful the puking is over. I'm hoping we catch a break here for a bit and I'm glad Olivia is getting back to herself. 

Total aside here, but something I don't ever want to forget. We have a true die hard, 1D (One Direction) fan on our hands. Olivia loves to watch music videos while she is doing treatments and for the past 2 weeks, that has been for over 1.5 hrs/day. So lots of 3 min videos have been seen and by far her most favorite is any song by One Direction and I Lived by One Republic. She's fallen for the 1D boy band and is especially smitten with Harry and Niall, it is so cute really. Whenever you mention One Direction to her she gets all shy and bashful. Anyway, it's absolutely bittersweet to watch and listen to her belting out her little heart, singing along from behind her neb mask with the shaking vibration of her vest. Over and over, for 30 minutes she'll belt out every song. It's even more bittersweet to listen to her singing along to One Republic's I Lived. However, I do believe exercising those little lungs during treatments through singing is just an added benefit. Thus, all of us in the family, pretty much have every One Direction song she chooses, over and over again, memorized too, they are definitely catchy songs, and I'll admit it, I'm a boy band fan too. (The New Kids on the Block were the boy band from my era and I remember the crushes I had on them, of course I was older than 5 though!) So that's our newest fad, heaven help me, she is already requesting that Santa bring her One Direction bedding for Christmas, this little crush seems all too soon and sudden, what happened to the princesses?! Olivia is definitely growing up, after all, she is a big 5 year old now . . . 






Monday, October 6, 2014

Happy 5th Birthday Olivia!

Last week our little lady turned 5 years old . . .


Honestly, without sounding like a broken record, where has the time gone? 

How is it that our "baby" is 5 years old? 

Clear as day, I can remember the pulmonologist from the NICU telling us that the first 5 years were critical for keeping Olivia as healthy as possible . . .  and the daunting feeling as a result, just thinking about trying to keep her safe from illnesses for that long. Now as I sit here, 5 years later, it doesn't seem possible that so much time has passed.

Over the last 5 years, some days, seemed to last forever . . . 

. . . weeks and months are blurred together, but looking back in the grand scheme of things . . . 

. . . the past 5 years have absolutely flown by. 

For as hard as it is to comprehend that our little lady is growing up so fast, at the same time it has been an absolute joy to be her mom and watch her grow into the person she is becoming. Olivia is our princess, we feel so blessed to be her parents and we know that we are lucky to be the parents to the two wonderful kids we have. We cherish the past 5 years and look forward to whatever it is the future holds for us as parents to our sweet kiddos. 

Not surprising, Olivia requested a Frozen birthday party and I didn't disappoint. We played "Do you want to build a snowman?" and had a snowball toss game followed by a indoor snowball fight. (Thankfully, we didn't have real snow here yet).We munched on Frozen themed treats: Frozen Hearts (strawberries) Sven Food (veggie tray), sandwiches, Melted Olaf yogurt, a Frozen birthday cake and of course, chocolate! Making the party themed food is always a lot of work that I get a kick out off more than the kids, but none-the-less, I keep at it, they will appreciate it more the older they get, I'm sure :)

Olivia enjoyed presents and watching the movie Frozen, for the umpteenth time, and then we went for a mile long bike ride which Olivia enjoyed on her new big girl bike. 

Of course, she spent most of the day, prancing around in her new Elsa dress too!





Landen picked out this mermaid princess barbie for Olivia at the store for his birthday gift to his sister, she was super excited to get it and even more so because it was a gift from her very best friend Landen. 



Happy 5th Birthday Olivia, we love you so much!

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*