Clinic Visit Update

Today Olivia had her next follow-up visit at the CF clinic. After how hard we'd worked over the past 3 months in getting her to eat more and gain weight to try to avoid the g-tube talk for awhile longer, we were a little nervous about how it would go. After all, she did get really sick in January which caused her weight to drop substantially. In December she gained just short of 2 lbs from her weight at the November clinic and was up to 25 lbs 10 oz, this being a huge accomplishment for her as at best she had only been gaining 1 lb every 3 months in the past. Then the kids got terribly ill and her weight dropped down into the 24 lb range so a lot was lost. So given all that, I knew her weight wasn't where it could have been but I did know that we gave it our all.

Spending countless hours with her daily for 3 meals and 3 snacks, I pushed her hard, pleaded with her to eat and bribed her with a treat when all else failed. Most days come the kids' bedtime I was burned out and so sick of food and sitting at the dinner table, it was pure exhausting. So much of my days are spent trying to get her to eat, drink and then eat and drink some more, it still is exhausting and many days frustrating. When I put her on the scale a few days ago she was only at 25 lbs 3 oz, so she didn't regain much of what was lost after her illness. Thus she didn't gain near as much as I would have liked given how hard we fought, so I was a little disappointed and afraid at the same time that maybe diet alone isn't enough to suffice given her malabsorption issues.

But then today game and she stepped on the scale and was up to 25 lbs 13 oz. I still know it would have been better if she hadn't been so sick but so it goes. I do feel however that through diet, perseverance and hard work, she can do it, she is able to gain weight through a high fat, high calorie diet and this is what counts. So, the CF staff were happy, even using words such as "remarkable", "incredible" and patting both Olivia and I on the arm and telling us we did an "amazing job". They were impressed by here weight gain which was 2 lbs over the past 3 months so a huge increase from the past when she would only gain 1/2 - 1 lb in the same period of time. But what impressed them most were the numbers. Today her weight was in the 21st percentile, 3 months ago it was in the 7th percentile. Her weight for height was in the 12th percentile where 3 months ago it was not even on the chart as it was so low. So all of this is an amazing triumph and I'm so, so thankful.

They took a sputum culture so we will find out the results of that next week and are hoping the report is good. Since she just got off her last round of antibiotics 1 week ago we were told even if she continues to culture heavy growth of staph we more than likely will not treat it at this time as to not overuse antibiotics. Her oxygen saturation was 94%, this worried me at first as it's always been 99-100% but after talking with the staff, they said they were not worried as it fluctuates given many variables. It would be concerning if it drops below 90% and stays there so just something they will continue to check of course every 3 months. Otherwise her lungs sounded good and everything else looked good. So for now we need to continue to work hard to get her to keep up her weight gain and try to get nearer that 50th percentile mark for weight to height. With a little hope, lots and lots of hard work, dedication, time and one amazing little girl, we just might be able to do it!