Wednesday, January 23, 2013


Sunday I went to visit my ♥ Mama friend, Karen.  I met Karen the day her daughter Anya was prenatally diagnosed with HLHS at the hospital.  I'm sure that she was in shock and at the time it was her worst day ever.  I kept reaching out to her and dedicated to making a best friend out of her :)  We did become very close.  Anya passed away suddenly at home during the Interstage period, Nov 3 2012.  I went to Anya's viewing service in Nov, but I could not bring myself to go to the cemetery.  (Nor could I go to Demyni's burial, I just went to his viewing as well.) 

When I got to Karen's I just talked to her family for about 10 minutes.  Her Mom is so dear to my heart as well.    Then we drove to the cemetery because I was emotionally/mentally ready to visit Anya.  I brought her 2 roses.  One from Me + Cecilia, and one from Alexandra + Macsen.  I tried really hard not to cry, but I could not control it.  I think of my dear friend and her Angel everyday...multiple times a day actually.  Then we went to a restaurant and had dinner.  I was hoping to be able to spend more time with her, but Karl called and said Cecilia was inconsolable.  I want to be able to spend more time with my local ♥mom friends, so hopefully we can make plans again soon. 

Cecilia is in fact getting a lot better about her anxiety at home.  I think it is now narrowed to just occurring while I am not there.  That seems to be the only pattern I can see now anyway. 

Yesterday, our fantastic home nurse had a visit and she also thought that Cecilia looked much more happier and comfortable this week than she had last week.  I think she has finally adjusted to her previous diuretics wean, and I am happy about that!

We went to DC today and she had some "tests", or rather evaluations, on her neuro-development.  Cecilia is caught up on most of that, but her physical therapy is where she is behind.  I am not worried about this at all.  It is kind of expected, and of the normal findings in a baby with her condition who has had 2 open heart surgeries.  We resume therapy at home through the county starting next week.  Cecilia will continue going to this clinic in DC every 3-4 months, or until she is caught up!  She gets extremely upset if you put her on her tummy, or if she rolls onto it unintentionally.  I dont know for sure if it is pain or if it is fear, or both.  But in order for her to sit and crawl, she would need to build her strength of her neck, shoulders and her arms.  She will get there ♥ 

In 6 days Cecilia will be 7 months old!  I feel like this journey is moving on very quickly since we have been out of interstage!   That part went painfully slow!