Hope 4 Delaney

Hope 4 Delaney


Bring it on Mother Nature!

Posted by hope4delaney on November 24, 2009 at 1:07 PM



I figured we would take a new appraoch to the winter months. Yes we hibernate. Yes we are cautious with visitors and plan our outings with a bit more caution.....but WE will not fear you! WE will be ontop of every little sniffle and chill, because that is how we'll win. Dont think for a second that we'll be giving you any chance a pulling a fast on on us.......not this year! Hopefully never!


The fall months have been fun with the girls. Riley LOVES school. Shes doing really well in kindergarten and really enjoys the new friendships she has made along the way.  Delaney isnt so happy about school......only because she can't go!! She gets sad when Riley isn't around. She asks for her thoughout the day and responds with a simple "oohhh" when you tell her that riley is at school. Cute but a little sad too. She misses her big sister. When we pick her up, Riley is greated with a big smile and sometimes a squeal of excitement from Laney. Its funny. 

We just need to figure out how to capture this friendly playfulness between the girls and keep them that way. For as often as they are playful and happy with each other.......boy can they fight!!! Yes, these two little girls are divas (i have no idea how that happened......) and they fight over things.....all kinds of things!!!! Mostly Laney fights with Riley because she thinks she can do everything Riley does. Follow Riley everywhere she goes....this aggrivates Riley to no end!! Which now gives Mommy and Daddy major anxiety or heart palpitations......she just doesn't get that she isn't as big, strong, coordinated at her BIG sister.......and she will not settle until she does (or comes close to doing) what the BIG girls do.  Its entertaining to say the least. The temper tantrum when you try to help her that ensues is even more entertaining.   ahhhhh.....this is the payback.......awesome.


So Laney is adjusting to the toddler phase pretty well.  She takes her enzymes by the handful and just swallows them whole. Yes.......swallows the whole capsule....actually 4 of them with each meal.....sometimes add another capsule (for her prilosec) and the other meds.....its alot. Needless to say, she has yet to give us a problem with her medication.  She likes to hold her neb while she's doing her breathing treatments. She does "deep breaths" and actually will inhale and exhale numerous times throughout the treatment. Her chest PT is also going rather well.  We call it "pat-pat". Laney will take her percussors and pat them on her chest as if she were helping. Sometimes she will even give mommy or daddy some "pat-pat". Its funny how receptive she is with all of this. I figure its because she doesnt know any better, any different......fingers are crossed that it remains manageable and she is cooperative.


Delaney remains at her "baseline".....the best she can be, which makes us happy. 

She is currently taking the following medications daily:


Creon - 4 capsules with meals, 2 capsules with snacks

Vitamin ADEK - .50 ml twice day

Vitamin K - 1/2 tablet 5 days a week

Prilosec - one capsule twice day

Miralax - 1 tsp twice a day

Bethanocol - 1 ml 4 times a day

Pulmozyme - neb. once daily

chest PT 2-3 times daily (15 minutes each time)


We are looking forward to the holidays and will attach more pictures for everyone to enjoy. 

We hope everyone remains in good health and has an enjoyable holiday season.


All the best.


Bean's Mommy






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