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!