Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Friday, June 21, 2013

Out on the grass

The side effects of her new medicine are sooooo horrible. Tummy aches, vomicking, grouchy as can be, only wanting me to hold her... It was night and day difference on and off this stuff. She was almost sicker on the meds. I guess I will be making a phone call to pulmo to see if we really need that Singular. Or if there is something without the side effects. Her inhalers are doing the trick anyway.  I love to nuzzle her sweet cheeks. We went to get ice cream tonight and the guy standing behind us in line wanted to take her and feed her all his ice cream. She just smiled at him and clung to me. 


My Name is JACY said...

Heart Mommy,

Thank you so much for sharing your journey. I found so much peace and comfort and inspiration in women who can honestly and compassionately share their stories.

My sister in law just delivered her first baby who has congenital heart failure and was born down syndrome. I have been looking for blogs of women who are dealing with similar things so I can offer her all the help and love and support that I can. Thank you so much for sharing. While all of our trials are different, there is so much we can learn from one another.

I will definitely be back for more!

Much love,


My Name is JACY said...

I meant **I have found** ;)