This was our first time at the new clinic and it is so wonderful!! It is gorgeous inside and out! It is more functioning for CF patients and I look forward to our future appointments.
R did great with vitals and cultures. Thankfully, his lungs sounded clear! His sinuses were swollen and he had loads of drainage and mucus. He was down a few pounds which created major concern. (I knew he was down weight prior to appointment, eating blackberries and peaches doesn't really add much weight to the body. Ha) With CF people they really need to be above the recommended weight for their height/age to increase their lung function and give them a little wiggle room in case they become ill and lose weight. His weight has always been a major concern and has he grows older the concern grows as well... At this time he is the size of a one year old and he should be over 30ish pounds. Clinic is very worried if he were to become sick his weight and lung function would suffer greatly. We work really hard to help him gain weight but with his food allergies and lack of appetite it poses a challenge...
R's cultures showed no bacterial growth (praise the Lord) but it did show various viral bugs which point to the common cold. I assume he caught these bugs around 11.22 and they are still on a rampage as of 12.19. His cheeks haven't been pink as often - but his drainage, cough, lack of appetite/liquid intake, and sleep issues have remained. Over the past 4-5 days his food allergies have really showed themselves. He has been rashy and suffering from very mucusy and looser stools. (higher frequency as well) (TMI I know) The mucus is from him coughing it up and instead of spiting it out he chooses to swallow it and then it comes out with stool. The other poop issues are from the food allergies. He doesn't act like he feels bad which is a major plus! But I know that he isn't 100% since he still brings me "Blankie" and wants to watch TV on the couch vs shooting ball. Hopefully, he will kick these bugs before Christmas and before they turn into something worse.
All in all, we are doing good. We are in isolation and don't often leave the house to prevent future bugs/infections. We do lots of crafts, read lots of books, and recently we have been enjoying Christmas movies with deep couch snuggles. R loves the tree and the Christmas lights! He makes great company, everyday sitting on the couch with him is better than going on any adventure! I truly love this life, my child, and my family more than I know to express. Every day I thank the Lord for all this and it will never be enough.
|Thank you Child Life for bringing some fun cars and dinosaurs to play with! (Sorry new clinic walls for the scratches)|
|Grew taller a few inches and lost a few lbs. Win some and you lose some.|