Well, we had CF clinic on the 9th and it went... ok... no one is pleased with Logan's weight. They are starting to consider alternative therapies. The GI docs and Nutritionist said that if his weight is not significantly increased next month, then we will start with an NG tube (nasal gastric tube) for a couple of weeks so we can pump in extra calories. If that is not sufficient, then we will progress to a G Tube. I don't know that this was my "worst fear" but I was certainly hoping to avoid it. I have heard many people say that it was the best decision they ever made (getting a G tube) but I think i'm afraid that it will make the disease more real. I don't want to feel like CF is "beating" me. Up till now, it's all be preventative care so I've been able to remain positive. I am afraid that when it becomes less preventative, and more necessary, I will feel as though I have failed. I know that's stupid but I must not be the only one out there that does/has felt like that. I'm still fairly new to CF so maybe I'm still in the denial stage... I don't know...
Anyway, enough pity party. I'm getting excited for baby's first Christmas! It's coming up fast! We are lucky enough to have family that is coming to visit us over the holidays so that should be nice as well. We also made some time to get Christmas photos done and they turned out super cute!
Well, everyone here is currently healthy so that is also a huge blessing! Hoping to keep it that way! I will try to get in another one or two posts before Christmas comes along. So, for now, I will not type out my Holiday greetings to everyone. Hope you all are well and do not feel stressed in the upcoming flurry of the season! God Bless.
Positive thoughts always coming your way from here in Allyn <3
ReplyDeleteIt's such a balancing act!! I still struggle with it (and I've been doing this a while!!!) On one hand the CF stuff has to be a priority (obviously we all get that) but what gets tricky is that on the other hand there is a healthy kind of denial that allows me lead as normal a life as possible. With the kind of care you guys have with Logan's medical team and I have at the UW we have someone who can keep that balance in check. They respect our ability to keep some control but aren't afraid to intervene when we need more vigilance or some new kind of treatment or intervention. CF impacts every part of my life in some way: When something new crops up and it threatens overflow into a new area (like eating.... which is such a social part of our lives) I resist that. Typically, once I get my head around it, it becomes just another part of my day. I hope Logan gains weight and this whole thing can be avoided. However, Logan is tough and it's amazing what he will get used to. Until I was about 7 I just assumed EVERYONE took 12 pills with every meal!!!
ReplyDeleteAlso: GREAT photos!!!!!!!
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