Damiens Fev .5 /Clinic visit

[damiensmom]

Well we are going to clinic friday and to take hes fev.5 after. We will also be refusing to sign consent for a g-tube at this time. I feel he is doing well. I will ask her if she is basing hes percintile on height to weight not months to pounds. I know Damien will still not be at 50 % but that is ok. I have a hard time figuring hes %. Are they adjusting hes age being he was 2 months early? Or are they not? I have prepaired a reconsideration on decision. #1 If Damien loses weight 2 months in a row or fails to gain weight 2 months in a row. #2 if he stops eating. And thats about it. Ihave read over 200 documents from pub med. researched B.M.I , enternal feeding, failure to thrive, nutritional failure, pyscological bonds/mother infant. Fev.1,pulmonary, spiromitiory,Gastroenterology, Evaluation and treatment interventions from Director, Arizona Child Study Center Clinical Associate Professer of Pediiatrics. I will make sure he has Developed all hes eating skills before I even consider it. Pyscologicaly no way not this young. And medically I need to see hes results from hes Fev.5 and see where we are as far as weight % goes. I do see the point on pulmonary function without a doubt. I hope that Damiens lungs didnt scar that bad and being on oxygen for 4 months minimized it after hes phumonathrax. This test will tell me alot. Wish us well.

 

[kayleesgrandma]

Good luck with the dr visit. I agree, it seems like you've researched and I think you are in the right. Kaylee is also small for her age, but so was her mother, and it had nothing to do with cf. I think the only factor should be weight gain. That is easily measureable. Make sure he's getting his vitamins, as they are significant to his height gain. You are a good advocate for your son.

 

[JazzysMom]

Stand your ground. I truly dont think you would push an issue if it would actually be harming him. Good Luck on the visit & of course be sure to update us!

 

[Jane]

Good for you Aria for being well-informed. That's the best thing you can do for your your son.

Good luck with your appointment and testing.