Monday, December 28, 2015

A December to Remember

We've just been doing our thing and having a great time as a family.  We celebrated Cookie Day, my birthday, Christmas Eve, Christmas Day and now our first snow fall!  Here is a photo dump of all that's been going on. 

Lydia's first taste of ice cream at Mom's birthday dinner!
Grandma's first trach change.  Lydia looks mad but she's fine, this is typical trach change behavior!  This is huge because now we have two people that can watch Lydia besides her nurses.  Meaning I can work evenings and weekends when necessary and Dan and I can go out...together...every now and then.  



Lydia and all her Christmas presents!


Green Beans and Peas = okay.  Squash = not so much.  Sweet Potatoes = Jackpot! 
  
Getting some rest with all her buddies.

Monday, December 14, 2015

More green beans, please!


Kiddos with feeding tubes can develop oral aversions and not want anything in their mouth.  This can make teaching a tubie how to feed very difficult.  I'm on a mission to not let that happen!  

We do oral stimulation with Lydia every day.  This may be a couple of minutes to 10 or 15 over the course of the day.  We use pacifiers, teething rings, NUK brushes, fingers, toys, clothes, lovies, whatever!  The goal is to get Lydia to accept objects into her mouth and for her to explore with her lips and tongue.  I think we've nailed it!  That kid can't keep her fingers out of her mouth and her owl and giraffe lovies always find their way to her mouth.  Hooray!

I kept on asking when we could start tastes with Lydia and I wasn't getting any response from her doctors.  Finally, about a month ago, I told them that our in home Occupational Therapist was going to start tastes and that I wanted them to sign off on it.  The Special Care clinic at CMH had a minor panic attack and scheduled me an appointment with their OT.  I win again!  Nothing like a little threatening competition to get my way.  We went to see Connie at CMH last month and Lydia tasted rice cereal.  The pictures below are of Lydia tasting green beans last week at our appointment.  

Everyone asks with excitement, "how does she like it?"  My response, "eh."  She thinks about it, licks the spoon or NUK brush, eventually lets it in her mouth.  Then we have a brief moment of gagging until she realizes the world isn't ending because peas on a spoon have entered her mouth.  She'll wallow it around a bit, stick her fingers in her mouth, spread it all over her face and then it eventually goes down the hatch.  We have squash and sweet potatoes to try next.  Maybe orange is more her color.  


Please notice the awesome hair day that Lydia is having yet again.  It's always awesome.

Please notice the fat chub on her arms.  The girl is building biceps already.  #bodybuilder  

Sunday, December 13, 2015

Cookie Day 2015

There has been a cookie day in our family since my mom was a little girl.  
This year marked my 32nd and Lydia's first!  

Great memories being made each and every day. 


Tuesday, December 8, 2015

Every day is a good hair day!

 Sitting in a basket because mom was busy doing stuff.  

  Watching mom wrap Christmas presents, but not mine.

  Wearing Dad's hat while we watch the winter meetings.

   Hanging out in my Bumbo while mom gets dinner ready.


Inside Out: Lydia's Version

Anxiety - yep, about most things. Envy - uh huh, and wondering why she's different. (scars, treatments, growth hormone shots, CPAP, IE...