Saturday, June 11, 2011

Evan Today

Evan is currently in a spica, full body cast, after a right hip reconstruction; one of the anomalies on his right side. The course is 15 weeks in a cast, one month in a brace, then rigorous physical therapy so he can learn to sit and crawl again then he’ll learn to walk! The cast comes off July 6th. This was a planned surgery which is always a good thing; another check off the list.

Evan has reached the minimum weight and height requirements to be eligible to receive a kidney transplant. At 21 months he is now 22 lbs. He was added to the UNOS Kidney Transplant List on June 3, 2011. This was a big check off the list!

He has an appointment with his transplant team to discuss the next steps. The biggest step is the construction of an incontinent bladder. He needs a functioning bladder before he can receive a kidney. The timing of both must be precise so a living kidney donor is ideal. His dad is a match and almost finished his donor work up. We remain positive that he’ll qualify as Evan’s donor, but multiple plans are in place in case needed.

Additionally, Evan was recently prescribed eye glasses for farsightedness. His eyes, particularly the right are crossed. The Dr. is hoping his eyes will relax with the glasses and his vision will get worse. In three months he’ll be re-evaluated. If all goes well he’ll get a different prescription and be done. If his vision remains the same he’ll require surgical intervention to detach the muscle and reattach it further back. His follow-up is at the end of August.

Developmentally Evan is behind, but he is well advanced considering the time he’s spent in the hospital. He speaks at least 35 words, uses sign language and even knows a few words in EspaƱol. His hobbies include: pointing at things and asking, “that?!”; blowing kisses; turning pages in books; playing, listening and dancing to music; throwing things on the ground; laughing; repeating what we say; meeting new people; and talking on the phone.



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