Wednesday, July 6, 2011

July Update....

I know...I's been a while. Give me a break, it's summer AND I have alot to do! I am sorry it's been so long...I will try to include all updates in here...but still, alot has been going on as usual.
Okay, so, Ashlee has been doing great, as usual ;o)
I have even gotten her to drink some Boosts out of cups with flavoring (which we have tried before, but did not work...this time I found some flavored straws to start her out with...)...still not totally working, but closer! lol She has been spending most of her time outside, as usual :o) She has her very first appt with her new doctor in Ann Arbor on Friday this week!!! She is a little nervous...and to tell you the truth, SO am I! lol She will do just fine :o)
Jordin on the other hand...I just never have anything good to say unfortunately..(well, except the obvious...that she is overly adorable and such a sweetie :o)) AND a little trooper!
Since being home from the hospital (mind you, we did 2 weeks at Motts of IVs, then took home another week of IVs)...she slowly improved over the last week of IVs and continued to improve (her sinuses and cough) over the next week...her sinuses seemed pretty clear (more clear than they have been in over a year)...for about 2-3 weeks...and now as of this week...she just continues to go back downhill. Her sinuses are all clogged up again and causing issues at night with coughing...and an increased all together cough :o( AND she is still having her random vomiting issues. We have not overcome that. We go to Ann Arbor on Friday (total of 4 appts, now we have to go back next Friday for her GI appt)...she will see Pulmonary CF doc, and the ENT. Hopefully the ENT can shed some light on something for us. We have been playing with her feeds and are now on a crazy 5am - midnight schedule that we can't even follow...1, because I can't get my ass out of bed to hook her up after being up late to unhook her and couging fits in the night, and 2...because she is having coughing fits...the feeding only makes it worse..making it a waste of my time to hook it up so early. So, hopefully we can do something within these appts on Friday to help her feel a bit better for the time being. I know this is all she knows...but she's still gotta be sick of feeling the way she does and puking :o( My poor honey <3 should be an interesting trip on Friday...1 day, 4 appts, 5 hours of driving time...2 kids...yikes. Pray it all goes well!!! Best part is that we get to meet my bestie CF mamma friend :o) I think I hit all the important points...will try to update sooner with all that is going on!

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