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.

Saturday, February 22, 2014

The pager and Sibs class

Tuesday May had Neuro clinic. The Doctor said her tethered cord surgery has healed and she doesn't have any signs that would indicate a re-tether. She is growing beautifully and from his stand point looking great. Thank you Doctor, for some awesome news. We will take what we can get. The only bad news is our Dr. Is retiring. So great for him, sad for us because we really like him. We follow up with a new doc in a year. 
Yesterday we had transplant clinic. We decided to move forward with IVIG. So we had to get that set up. We also got the PAGER. When they handed it to me Ry asked what is was. She is not familiar with those things. With everything in place, it feels really real. Alex has been listed for 14 days today. We also had a sibling class with the wonderful Miss Jen. We adore her. She is the child life specialist. The kids did play therapy with hospital buddies. I think they are one of the most healing tools for my children. They are these little stuffed dolls with a hospital gown on. You also get a Dr. bag filled with things you might see and use during a hospital visit. The dolls help the kids to try out the things so it makes them less scared. My kids have made and played with a bunch of these dolls, but each time is a different learning experience for them. I saved their dolls in the past with the date so they could have them later. I plan on putting these new dolls in a bag that can go back and forth from the hospital with us. That way we can reuse them. I always feel a little frazzled when I have all the kids with me. But, I am learning that I need to be more prepared. I thought I was prepared before, I just have plans to make it really easy on me. Starting with a snack bag that stays in the car. I do this in the summer. I realize now that I need to have it at the ready all year round. When little tummies growl, their fun meter is empty. 

This is the lovely Miss Jen. She is helping Eden to place an actual IV then give meds to her doll through the IV. We also met Miss Michelle, another amazing transplant team member. I have been so impressed by each one. They are all so nice. Then yesterday afternoon we ran over to the school. I am on the PTA and we were feeding the teachers for parent teacher night. Cafe' Rio catered for us. It was fantastic and a huge hit! 

1 comment:

Sally said...

THE PAGER!! Wow, that's got to feel like one heavy weight. I used to do the sibling classes at the hospital. I volunteered there for a year. I LOVED it! I love how family friendly they are. Let me know if I can do anything to help!!