Monday, November 28, 2011

Today Olivia had her follow-up visit to the CF clinic. Over the previous few days, I had a gut feeling going into it that it wouldn't be a fun day, as I knew from her last visit that her weight was continuing to fall off the growth charts. As it's often said, "follow-your gut instinct", mine proved to be right, unfortunately. Instead of finding joy that Olivia had gained 1 lb in the past 3 months, which was better that the 1/2 lb she gained during the previous 3 months, we instead were hit with the harsh reality that a GI tube will likely be in her near future. She continues to grow taller but her weight isn't keeping up. Where her height is near the 75th percentile her weight is at the 9th percentile and thus her weight for height ratio has now fallen off the growth chart completely. So it proved to be a bummer of a day, to say the least.

I remember when Olivia was first diagnosed with CF at 5 days old, the pulmonary doctor mentioned GI tubes and that was the one thing I never wanted her to have to go through. Doing nebulizer and vest therapies and taking the numerous meds she does everyday aren't constant reminders of CF because they have a time limit. After therapy is done, we put the neb and vest away until the next therapy session. After she's taken her meds, they too are out of sight until the next snack or meal and she goes on living just like any other little girl whereas a GI tube is permanently inserted into your stomach for an extended length of time, it doesn't go away when the treatments done and will be a constant reminder of CF. Life is hard enough for kids, children, teens without noticeable differences and this was one thing I didn't want her to have to face, at least not this early in her life.

While I know we have done about everything we can to get her to gain weight by pushing fatty foods high in calories and at times forcing her to eat more than we should, I know it's not Jeff, I or Olivia that have failed because as is all too often with this disease, that I hate so much on days as it rears its ugly head, there are so many things with CF that you can do absolutely right that will still never be good enough.

So for the next 3 months we are in a watch and see stage, praying and hoping with each day that she gains enough weight to avoid the GI Tube, at least for now. We will try even more to continue to get her to gain weight through foods higher in fat and calories and see what happens. Monthly we have to weigh her and report to the CF clinic for them to evaluate what our next steps will be. So for now, I will grasp on to what hope I have left and do all that I can through foods high in fats and calories to try to help Olivia gain weight so that at the end of these 3 months, we will know that if this doesn't work, it's unlikely that her diet alone will be enough to help her gain weight and then we'll have to go down the GI tube route.

The holiday season is always stressful, ours will be even more so worrying about what lies ahead for Olivia but as she has proven to us many times in the past, she is a fighter and I hope too that she can overcome this battle.

Wednesday, November 23, 2011

A Season for Thanks

Every so often at preschool, Landen's teacher will ask each student in the class the same question, record their responses and put them out on a big board for the parents to see as they pick up their children. Last week at preschool the question was, "What makes you happy?". Most of Landen's classmates said some sort of toy or food, one little girl said her mom and here next to Landen's name for what makes him happy is Olivia. As Olivia and I stood their waiting for big brother Landen to come out, I couldn't help but tear up at his response. I was amazed that he said something other than a toy and that he didn't just repeat an answer of one of his friends as is sometimes the case. Realizing how special of an answer that was and what a great big brother he is to Olivia, again made me realize that I sure do have a lot to be thankful for this holiday season!

Landen and I made "thankful turkeys" a few weeks ago and one of the items on my list was good health. Although I can't say that we haven't been hit very hard this season with our share of colds, as it seems the kids have both been sick nonstop over the past 3 months, I can be thankful that the kids have fought off the colds well and that Olivia's colds haven't developed into anything worse. It seems that I've been wiping snotty noses and doing increased treatments for Olivia nonstop these days but thankfully she continues to fight through each and every illness that comes her way. It's nice to see that she doesn't lose her spunk and craziness and that her colds haven't slowed her down much at all. In the back of my mind I know this won't always be the case and am fearful for those days but for now, I am thankful that she is managing them well and will worry about the unknown when it gets here. 

Olivia has begun to eat better which is a relief but I'm sure she burns so many of the calories she does get because she's so busy and just breathing in general for her takes twice as much work than for people without CF. We we keep pushing high calories and fats and hope that she picks up in her weight gain. Her next follow-up appointment is next week at the CF clinic so we'll get a full report then. 

So as this season of thanks is once again all too soon upon us this year, I again am thankful for all the good things in our lives. I am once again so thankful for my two wonderful children whom both bring smiles and laughter to my life everyday. Despite the nonstop illnesses, I'm thankful that Olivia has managed them well without slowing down. Her nonstop spunk can wear me out just watching her but it fills my heart with so much happiness, love and hope for her future in her fight to conquer this disease. Landen's personality and kindness at this young age also bring me great joy. As hard as it is to watch him grow up so fast, the little boy he is and continues to become couldn't make me more proud. We are very blessed to have such wonderful children that make each day better just because they are here. As Thanksgiving is just less than a day away, we wish you all a very Happy Thanksgiving and thank all of you whom have joined in our fight against CF again this year, through your generous donations, participation in events and prayers for Olivia. May you all have a Happy Thanksgiving!

Fun with Shelby

Helping mom decorate for Christmas


Tuesday, November 1, 2011

Halloween Fun

We hope you all had a very Happy Halloween! Landen and Olivia had a lot of fun. Olivia dressed up as a little white kitty and Landen was a garbage truck. The kids got to enjoy two fun trick-or-treating adventures yesterday. They got to trick-or-treat at Daddy's work where they got lots of candy and plenty of compliments on their costumes. Landen was pretty proud of his garbage truck! Then they went out trick-or-treating in the evening around town and had a lot of fun running from door to door filling their buckets with treats. They will have plenty of candy to last them for quite some time.

Olivia continues to do pretty well. Unfortunately she's on her third cold of the season, one of the disadvantages of big brother Landen being in preschool this year. It seems no matter how diligent we are about cleaning, disinfecting and washing hands, we aren't able to prevent the germs being passed to Olivia once Landen becomes sick so that's been difficult.  Aside from physically separating them there's not much else we can do. They are the best of friends and I am so thankful for their close bond but that makes it all that more difficult to stop the spread of germs. Thankfully however she has so far continued to manage her colds well with them not developing into anything more serious so we will continue to hope that stays the case.

I'd like to thank all of you who came out to the U of M Breathe Easy 5k for CF. Despite the rain showers just as the walk started it was a nice event. Goldy Gopher was a pretty big hit with the kids. Landen got a ride on his scooter which he was talking about for a few days after and the kids got their photo taken with Goldy which was pretty special. The U of M Student Athletes put on a great event this year and they more than tripled the amount raised for the CF Foundation from just two years ago! We appreciate all of your continued support of CF; with all the advancements in treatments and all the money raised to continue with research, we continue to hold out hope that some day a cure will be found for cystic fibrosis.

Olivia as a Little White Kitty
Landen as a Garbage Truck