Wednesday, January 27, 2016

Positve Patty

Going to take a Positive Patty route today for once! If I can type this up without my monitor blacking out several times...UGH I want a new computer SO BAD!!!

The Good?!
Well FINALLY getting Madies new chair on Feb 9th. BEYOND ready. GI appointment tomorrow in Hartford..Don't expect too much aside from a lot of driving back and forth..Going to change her button too. But I feel pretty confident that I could do that myself.Hsvent been too thrilled with GI just very..I dunno. Impersonal. (is that right word)-"Not existing as a Person; Having no personality"

Like when Madie had surgery we saw him before the surgery and I think that was it! Not even to check on her...That surgery was ROUGH. Poor baby girl was very upset..there must have been like eight teams of people who came and gave us "game plans". We just make appointments when we follow up. Even when the button FELL OUT I did not get a call or even a suggestion to come in. All worked out in the end but still...
Im certain Dad wants to give him a punch in the nose... I have been going back and forth with the button...have not really had to use it as kiddo has been drinking very well...But its always good to have like say if she is sick or just wont eat.. I barely use the pump anymore..that stupid thing almost always alarms in the middle of the night telling me it is out of feed and its still practically full. Madie gets wrapped in the tubing as well. Me and the Pump just don't get along. And lugging it back and forth to dads is even a bigger pain. Ill always miss that good ol one household...:/ Who knows...

Been hangin in there for the most part...everyone is getting along and just one day at a time. Was at my favorite breakfast spot yesterday having my awesome 6 dollar breakfast and the waitress said she had seen Madie's Grandma there.. I told her I had not seen her in awhile my heart kind sank... But I read my book and ate my breakfast which was amazing. I dunno...
Im reading a book about a woman who falls on her head at the Gym and wakes up not remembering the last 10 years of her life...She wakes and has three kids and a husband who is divorcing her and fighting for custody of the kids...EEK. It moves a little slow but I am intrigued. What Alice Forgot.
Bought a new Travel bag for vacation too..its super cute. :) I am kinda nervous about the trip and the ONLY thing I dread is getting up at 330 in the morning to catch that 6 am flight out of Hartford! But I am so stoked. And I hate non direct flights! bah. We will play in the water every day and shop till we drop and eat yummy food and swim with the happy captive dolphins!! lol My friend and I may take turns on the water slides...SOMEONE has to loose a bathing suit top! LOL
I wish Dad was going with us a family very much...that would certainly be ideal..But I am bringing my dear friend whom I have known awhile with us.. STill pretty stoked. I hope its not too hard with Madie and all her "stuff". I plan on getting a good burn and forgetting the Aloe..kind of a long standing tradition...;)

Miss Madie has been doing well. Very giggly and happy girl lately.. I don't want to jinks anything! Seizures I guess are the same...I don't want to jinks any of that either. I am always on the edge of my seat worrying that she will have a big seizure and maybe she has but I don't hear? I dunno...some nights I have the space heater on cause I live in a place where when the windows are closed and the heat is on you would never know... SO maybe the buzz of the heater blocked out any noise...or maybe she has not had one....I couldn't say. I don't like to speak of it!
Epilepsy is a part of our lives..
Shes at school now and I always worry that her day is so long that she will be pushed to overtiredness... But my big girl always makes it thru! (unless she is sick) And I am so proud of her lil self. She laughs and laughs and warms everyones heart. My heart explodes when we are just hangin in our jammies on my bed watching Moms shows and shes laughing and shaking her rain stick distracting me! I love to tickle her feet its so funny. Than the cat gives me that look...LOL The death ray!!

sigh...Well guess I don't have much to ramble about today. not looking forward to lugging out to Harford tomorrow but mid as well get er done. Been feeling okay lately aside from my back kinda hurting but not terrible. gotta get to target and grab a few things today and get more laundry done. hope everyone is well.


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