So I think that I am going to rename my blog. I would like to incorporate something about how we are living with Cystic Fibrosis. CF is becoming a huge part of our life and I know that I want to raise awareness about it. There are so many trials and allot of research yet to be done. I welcome any and all ideas if anyone has any.
Now, for the update on Luke. He is such a happier baby now! He gets fussy but not near as much as he used to. He has been only waking up once during the night and he has been keeping a schedule. He is eating 5 oz every 3 hours and the doctors say that is great.
He has been throwing up allot though. They think that it may either be his reflux or that he is aspirating and then coughing so hard that he throws up. I personally think that it is because he is on dairy formula versus soy but they said that they are going ot send me home on soy. They really want him to stay on the Alimentum as long as he can. The proteins that are already broken down for him help him digest his food better.
Here is the BIG announcement. Luke gained half a pound since Friday! I am so proud of my little boy. I am hoping to keep getting a good gain every time. I knew that he had gained some weight because he was heavier.
Also, Luke's lungs sound very clear. They are amazed at how good they sound. No crackling or wheezing in his lungs and they don't here where he is struggling anymore. His oxygen saturation is staying super high and in fact they don't even monitor it constantly anymore. Now they just check it whenever they do vitals.
I appreciate all the prayers and I already see God's hand here. They thought that he had a bacterial infection that was CF specific. They have seen a correlation with the earlier that CFers get it and the earlier that their lungs start to deteriorate. They were pretty certain that he had it but whenever they looked at the culture after it had grown some more and they checked it again it was a less serious infection.
I hope to keep having good news for everyone. I am just so thankful for how much better he is getting. Did I mention that he is cuddling again? Well he is and I am so thrilled. Maybe there will be even more fun things that he will start doing again.
Internal Conflict...the rest of the story
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After a harrowing night of plane delays and rescheduling, I returned to my
original flight (once I knew it was actually going to take off!) We left TX
at a...
2 months ago
1 comments:
WHAT GOOD NEWS THAT YOUR LIL' MAN IS DOING WELL!! MY THOUGHTS ARE WITH YOU AND YOUR FAMILY.
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