Saturday, June 8, 2013

Sadbh’s update – June 7th 2013


Sadbh had a good night, but woke up around 6:15 and was very sad and emotional.  She ate two pieces of French toast for breakfast and was very upset when Katie started to make signs to go to work. 

Her neck was red and sore so Katie and Larissa put a piece of medical tape on it.  Sadbh was still very fussy and clingy and she really did not want Katie to leave for work. 

They packed up for a walk and all headed out.  Sadbh cried when Katie didn’t continue on down the block, but as soon as they got to the chickens, she was happy again. 

Larissa, Amy and Sadbh carried on to the Fire Station.  Sadbh was very scared at first, but she got to look at one of the engines and speak to a few Firemen.  She was shy, but interested.  She got a cute sticker and the gang returned home.

After a snack, it was time for trach care, which was a little rough since her neck was so sore and red.  She said "owie" to every spot Larissa touched as she cleaned.  Afterwards, she slept for a few hours and woke up to a nice dinner of fried rice, tofu, avocado and lots of frozen peas (she insisted on the frozen ones, maybe she’s getting more teeth?).

She continued to be very emotional and, at one point, she hung her head low and said “I’m sad.  I miss Daddy.”  Throughout the day, Sadbh insisted on looking at pictures of Daddy on the iPad. 

When Katie got home from work, Sadbh seemed to be in slightly better form.  They were able to get Daddy, Nana and Grandad on Skype and Sadbh was delighted to play a bit with them.

The rest of the evening was spent drawing, playing and eating.  Sadbh had a hard time going to sleep, even though she was completely wrecked.  She finally dozed off around 9:30, just in time for Danielle to arrive.

There is no doubt she feels the stress of the house currently.  She is very sad her Daddy is away and she can’t wait for him to return next Tuesday. 

We are also working very hard to sort out insurance issues and the clock is ticking towards June 24th, when UnitedHealthcare is planning to terminate our nursing coverage.  Katie is working with an attorney on a 3rd and final review and we will continue to fight for what is right from there. Sadbh requires licensed and skilled care around the clock to ensure her airway is open and we will fight for this.




All the best,

Wayne, Katie and Sadbh.

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