Status Report and Photos

Pharah has done wonderfully since her surgery. She is back home with her host family recuperating and have a great time with her host siblings. These two definitely look like fast friends!

This is Pharah at the hospital. Look at that sweet face! Thank you Julie for all the pictures you sent us!

Brenda and her host brother Lubens are also having a great time together. Brenda has done well since her surgery, but we are hoping she will begin to eat a bit better. She is still not eating as much as the doctors and her host mom, Kim would like.

Brenda is definitely enjoying all the snuggling and attention from Lubens.


The update on Chedner is a bit better. We struggled most of last week to keep him calm and in bed. He has been fighting all the meds he is being given to sedate him. We switched one on Thursday and upped two that we hoped might help him lay still. The first day or so after the switch, we saw marked improvement. Now, he is beginning to be awake again for very long stretches and is struggling a bit. Time will tell. He still has 2 1/2 weeks of traction before he gets the pins out and we can pick him up. I knew standing beside him and not just picking him up to comfort him was going to be difficult, but I will say I underestimated how difficult it really would be. He is often frustrated and angry at me as I am suppose to be his rescuer and I won't just take him away from all of this. He points to the window and the door and yells, "up, up, up!" or "go, go, go!" and all I can say is not yet. He is definitely at the hardest age for this as he is used to be being very busy and his language is just not good enough yet to explain this whole ordeal to him. He often lays and just watches TV if I am not beside him, but he won't eat anything for anyone but me. To be honest, he isn't eating much for me either. We are now feeding him by an NG tube throughout the day and night. He has definitely lost some weight.

In the end, there truly was no choice about having this procedure and it will be worth the tears and frustrations for both of us when it is done. This surgery is just one of a staged process, but thankfully the others are not as extensive and the hospital stays are shorter. We are blessed that we have been able to be here at Johns Hopkins as they are truly the world's best at this repairing this condition. Dr. Gearhart, his staff and the nurses here are incredible. The support of the folks at the Children's House and Child Life have definitely made the stay easier on all of us.

That's the status report today. Sorry no photos of Chedner as I was too busy dodging the crackers he was throwing at me to snap the picture! Maybe this later this week.....