We did our clinic visit last Wednesday.Olivia weighed 13.8 lbs and was 25.5 in long. Her weight to length ratio was up slightly but they still want it up more. The nutritionist upped her Creon to 3 pills per bottle and said to use 2 pills for solids now that she is eating a larger quantity of solids.
Nothing was out of the ordinary. The baseline X-Ray from March looked good, but the Dr. said those really didn't show anything for a CF patient. She said that if needed they would have to do a CT scan (I think that was it, it's been a week so hard to remember. LOL) to really see anything on a CF patient. Makes you wonder why they do a baseline X-Ray then. huh?
Tuesday, May 22, 2012
Tuesday, May 1, 2012
Rough few weeks
The last few weeks have been rough on all of us.
At the beginning of February, my dad found out he had cirrhosis of the liver. It was an accumulation of health issues over the years. We had assumed it was at the beginning maybe even the mid-stage and would progressively get worse over the next few years. Instead, he was close to the end stage of the cirrhosis. Over the last two and a half months, he had been in and out of the hospital and the last week of his life was spent in a nursing home. Very hard for a man who was constantly on the go and use to doing his own thing, his own way, on his own time. He passed on Monday, April 23, 2012. We will all miss him so much, but at the same time we are glad he is no longer in the pain that he was in for those last few weeks. I love you, Dad.
Olivia was a trooper during all this. All the trips to the hospital (I didn't make as many as I should have) and all the time spent just being with him and mom at the nursing home, really messed her schedule up. Which of course has messed her eating up. She has not been drinking as many ounces as she should be, but hopefully she has been gaining enough that the nutritionist won't have a conniption fit. The last time I weighed her she was only around 13lbs. I think they want her close to 15lbs by next visit which is only a little over 2 weeks away. I'm not sure she will even make 14lbs by then. /sigh
I think she may be teething on top of everything. I don't see any tooth buds yet, but she is gnawing hard on everything. She's also been working on a few new milestones. She can now occasionally put herself in a sitting position and she's trying to get on her knees or toes to crawl. No actually crawling yet just the attempts.
Plus during all this we are weaning her from exclusively pumping with formula fortification to all formula. We started with 1/4 formula to 3/4 pumped breast milk plus the added fortification formula. We are now up to 1/2 and 1/2 once all the frozen bm runs out then she will be totally on formula.
Luckily, she has not 'caught' anything from anybody during all of this. Which is great considering that there is a greater chance of getting sick from things in a hospital or nursing home environment. Not to mention how many more people have been holding her the last few weeks.
The older two girls, Alexis and Eliana, and I had a girl scout event that our troop was planning during all of this. We had the event Saturday, April 28 and it went really well. The event was a Mad Scientist day. We had 2 troops from other counties come plus some from our own county for a total of 24 girls not counting our six girls who were running it. The experiments were dancing raisins, floating oranges, jumping pepper, fingerprinting, balloon blowing without your breath, crazy putty/bouncy ball, lava lamps, volcanoes, tornado in a bottle, and sharpie tie-dye lab coats.
Plus last week was TCAP (state testing) week for the two older ones. They ended up having to do a make-up test on Friday for their Thursday testing.
Eliana's soccer has been going ok. They've won about 1/3 of their games and lost about 2/3, but they've played really well over all.
I think that pretty well sums up our last few weeks.
At the beginning of February, my dad found out he had cirrhosis of the liver. It was an accumulation of health issues over the years. We had assumed it was at the beginning maybe even the mid-stage and would progressively get worse over the next few years. Instead, he was close to the end stage of the cirrhosis. Over the last two and a half months, he had been in and out of the hospital and the last week of his life was spent in a nursing home. Very hard for a man who was constantly on the go and use to doing his own thing, his own way, on his own time. He passed on Monday, April 23, 2012. We will all miss him so much, but at the same time we are glad he is no longer in the pain that he was in for those last few weeks. I love you, Dad.
Olivia was a trooper during all this. All the trips to the hospital (I didn't make as many as I should have) and all the time spent just being with him and mom at the nursing home, really messed her schedule up. Which of course has messed her eating up. She has not been drinking as many ounces as she should be, but hopefully she has been gaining enough that the nutritionist won't have a conniption fit. The last time I weighed her she was only around 13lbs. I think they want her close to 15lbs by next visit which is only a little over 2 weeks away. I'm not sure she will even make 14lbs by then. /sigh
I think she may be teething on top of everything. I don't see any tooth buds yet, but she is gnawing hard on everything. She's also been working on a few new milestones. She can now occasionally put herself in a sitting position and she's trying to get on her knees or toes to crawl. No actually crawling yet just the attempts.
Plus during all this we are weaning her from exclusively pumping with formula fortification to all formula. We started with 1/4 formula to 3/4 pumped breast milk plus the added fortification formula. We are now up to 1/2 and 1/2 once all the frozen bm runs out then she will be totally on formula.
Luckily, she has not 'caught' anything from anybody during all of this. Which is great considering that there is a greater chance of getting sick from things in a hospital or nursing home environment. Not to mention how many more people have been holding her the last few weeks.
The older two girls, Alexis and Eliana, and I had a girl scout event that our troop was planning during all of this. We had the event Saturday, April 28 and it went really well. The event was a Mad Scientist day. We had 2 troops from other counties come plus some from our own county for a total of 24 girls not counting our six girls who were running it. The experiments were dancing raisins, floating oranges, jumping pepper, fingerprinting, balloon blowing without your breath, crazy putty/bouncy ball, lava lamps, volcanoes, tornado in a bottle, and sharpie tie-dye lab coats.
Plus last week was TCAP (state testing) week for the two older ones. They ended up having to do a make-up test on Friday for their Thursday testing.
Eliana's soccer has been going ok. They've won about 1/3 of their games and lost about 2/3, but they've played really well over all.
I think that pretty well sums up our last few weeks.
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