Today we had clinic in Knoxville. It went really well! R was happy, like always!
95 Oxygen saturation
Concerned about weight gain, could be a GI issues. We will go see another specialist on the 29th.
Lungs appear to be clear, praise the lord!
We did another sputum culture to see how his bug growth is doing.
We took him off the cyproheptadine since we saw zero improvement.
All the blood work came back great! He had a few things alittle high or low but nothing to worry about!
Treatments remaining the same, every 3 hours
Concerned about weight gain.
R is in the 46 percentile for weight and 55th for height.
He gained .22 lbs in 3 weeks. He is currently 8.12 kilos and should be 8.20 or higher.
Hopefully the GI doc will have some ideas on how to increase appetite.
For now we are still doing butter, salt, Florajen, milk, oatmeal, and baby food.
Was impressed by R having a vest and doing treatments so well
She gave us a prescription for new nebulizer cups.
She gave us albuterol via inhaler for traveling, coughing episodes, and for nights when R doesn't want to sit through a 12 minute albuterol treatment via nebulizer.
She gave us information on common cf infections which I may post about tomorrow....?
Overall he is doing great from all the docs!
We are not starting any new meds or treatments at this time.
We are quiting the cyproheptadine, due to lack of results.
We will continue to work on weight gain and lung exercises.
We will have the culture results in a few days
Roanan is doing great! He is sitting up perfectly, rolling everywhere, laughing all the time, and thriving. He is off the charts developmentally and is doing outstanding CF wise. God had blessed R with wonderful health and a flawless personality. I am so amazed by this life, and by my perfect child...
As I sit here and hold a mask to my hero's face, filling his lungs full of salt water - i feel so blessed. So thankful to have this opportunity to be a mom, to have this one on one time with my son. So blessed to have medicine to help him thrive. I feel so overwhelmed with joy.
Before I speak a word
Let me hear Your voice
And in the midst of pain
Let me feel Your joy
Ooh, I wanna know You
I wanna find You
In every season
In every moment
Before I speak a word
I will bring my heart
And seek You