Ugh. With the cooler and much more fall like weather we are having here and Landen being back to school, I knew it would only be a matter of time until sicknesses lurked back into our home. They made their germy little way back in last week. Landen came down with a cold and then Olivia came down with it a few days later. No fun. It didn't seem too bad for Landen nor did it slow him down so that was a good sign we figured for Olivia, but not the case this time. She hasn't managed quite as well. She's been a lot more congested and snotty. Saturday morning I woke up to her crying and coughing. The night is always the worse for that thick icky mucus so I ran to get her and she proceeded to have a coughing spell and vomited out a bunch of thick nasty mucus on me. Poor thing, I felt so badly for her as it always frightens her when she pukes. Thankfully she got it out though. Thus, we've amped up her treatments to 3 times/day and are trying to get her to rest as much as possible all while continuing to push foods for her lack of weight. So it's been a stressful weekend, busy and hectic, but certainly nothing we haven't been through before, numerous times.
In regards to Olivia's Periactin, she had been doing better with her weight gain and we did notice that it was increasing her appetite after we got to the maximum dosage a couple weeks ago. This has been hopeful. When we went to clinic at the end of August, she weighed 27lbs 5oz. In less than a month she was up to 28lbs 11oz last Monday. That's super great news for her as there have been many times where she hasn't even gained 1/2 of a pound in a 3 month span so this is huge but we still have a long ways to go. She's still about 3lbs under the 50th percentile mark where she needs to be so we have to hope that she keeps gaining. Of course now with her illness, we will be set back as she more than likely has lost weight. That's what makes this journey with her weight so difficult. It always seems you take one step forward and two steps back, it's frustrating and saddens me because it is such a tremendous struggle for her.
This is the start of her 5th week on the Periactin but only her 3rd week on the maximum dosage so we will continue with it until we notice her appetite has decreased and then we will stop it for 3-4 weeks and start back up again. Her appetite has been very poor the past few days as a result of her cold of course. I've had a very hard time just getting her to drink anything, let alone take bites of food. I totally get it, who the heck wants to eat or drink when you feel like crap and are so congested that you can't breathe? It sucks so much though because we have so much ground to gain and can't afford any setbacks such as this. But so it goes, we will continue to do the best we can and push as hard as we can without making food her enemy and see what the next few weeks/months bring before our next clinic visit in November where we will talk about the g-tube once again.
I'm not going to get too down now, after all, Olivia's 3rd birthday is a week away and that's nothing to take for granted so I can't help but feel happy as it nears. I can't believe she will be 3 already. There are so many memories, good and sad from just 3 years ago that are still so vivid in my memory that it doesn't seem like they could have been near that long ago. So it is an exciting time for Olivia as she gears up to turn 3. Birthdays are bittersweet; thrilling that she is another year older and has done well over the past year but sad as another year quickly flew by, all too fast and with this disease one can't help but always wonder in the back of their mind how many more birthdays will come.
Just to show how much of a big girl she is, below is a video of her swallowing her enzymes whole. This is awesome, I'm so proud of her. We took a long road trip yesterday and got to see a lot of fall colors around here, it was very pretty. Beings we were in the car so long, we also took her vest and neb along with our handy dandy converter and were able to do treatments while away, that was awesome to have the freedom to go and do something fun all while being able to keep up with added treatments, got to love technology! Back to the enzymes though, there is a correlation, since we were in the car for so long, I thought it'd be much easier to hand her the enzymes to swallow rather than try to mix them in applesauce and lean into the back of the car to give them to her so I tried it and she did it, put 3 of them in her mouth, one at a time followed by a swig of water and got them down. So last night for her bedtime snack I tried it again to make sure it wasn't a fluke and she did it again so very cool and this for sure will make things easier for us all, super cool. She always amazes me. Now if I can just get her to not be deathly afraid of the toilet to be potty trained . . .
|Click the photo to watch a video of Olivia swallowing her enzymes.|