I like this picture because of what it represents – a Daddy’s love. Jason was introducing Bella to a friend he hasn’t seen in years. I love how happy and proud he is of our Bella girl.
Our version of some tummy time:
Bella is doing really well. She has been able to come off the vent for a minimum of four hours a day. Yeah Bella! I want so badly to be free from the vent. To be able to take her places with us. I have so much guilt. When we take her off the vent, she works so hard, her respiration rate is so high. She pulls and works. This would never be acceptable in another kid. But her heart rate and her stats stay good. I guess she’s just used to it at this point. I wonder if she’ll ever slow down her breathing or if she will work for every breathe for the rest of her life. When she is off the vent, she also loses her voice. All she has left is this grunt sound she makes in her mouth. I feel guilty that I steal her voice. She is doing so well, though. She is happy. A sweet little one named Presley is fighting in the PICU, sedated and on the vent with pneumonia. It reminds me of our days there. It makes me sad for her Mama. I pray for their family. It makes me want to grab my girl and love on her. It makes me so proud of her and all that she has fought, conquered, and lives with. I love you sweet girl!
Our family went to Splashtown yesterday (without Bella – more guilt). I looked around at all of the stairs and the pavers and all the people and thought there is no way I could bring Bella here. Our family is going to Morgan’s Wonderland in June. We are going to celebrate Joy and our cousin’s birthdays there. I am so excited! This is a place I want to support. I so want to take Bella. I want her to be able to do fun things with the family. I’m hoping, hoping, hoping she will be strong and well enough to go with us. I’m a little scared. We have never taken her over night anywhere without medical personnel. We’ll see. I’m hoping…..
I hope she is well enough too!
Bella will get there, you'll see. I'm finding even with Jax, without the vent, I'm hating taking him places when we used to take him everywhere. He just needs to be suctioned so much, its a lot of work. Tomorrow I'll finally get my perscription for robinol filled and hopefully that will bring relief. Tummy time is really difficult with the trach as well. Oh well, I guess we sacrifice some things for others. I could hear Jax voice when he was on the vent too, I loved it!
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