Kennedy Krieger

Nathaniel had a follow-up appointment at Kennedy Krieger yesterday. The last time Dr. Leppert saw him was on his year birthday so we had a lot of progress to show and a couple concerns to discuss. Nathaniel has been doing PT through Infants & Toddlers every other week since he was about 6 months old. He has made a lot of progress but his motor skills are still behind even for his adjusted age. At the Infants & Toddlers annual review last month it was decided we would increase PT to every week based on the fact that he was measuring between 8 and 9 months in motor skills (all other skills were between 12 and 15 months). Our PT therapist, Ann, is wonderful and I am so thankful to have her as a resource. Ann also mentioned the possibility of Nathaniel having Cerebral Palsy. My heart stopped and I have had a very difficult time with this news as I am sure any other mother would. Ann was very positive in saying that if Nathaniel has CP it is a very mild case and he should be fine but may need some additional help in learning to walk. She told me to talk to Dr. Leppert and wrote up a report for her. So back to the appointment yesterday.... Dr. Leppert ran Nathaniel through a series of tests and skills challenges and he did very well with all of them. Cognitively Nathaniel is right on target and doing great. We do need to keep a check on his language development so we are going to increase speech therapy visits with Infants & Toddlers to once a month instead of quarterly. With regards to CP Dr. Leppert sees the same concerns that Ann has but is not ready to diagnose Nathaniel with CP at this time. She said it doesn't mean he doesn't have it but he is not showing in her opinion enough signs to diagnose. The signs he is showing in addition to delayed motor skill development is the stiffness and tightness in his legs and ankles (especially the left), the curling of his toes and rolling inward on his feet when standing. The tightness is the biggest concern - his ankles can be flexed but not without a fair amount of push and he doesn't like to straighten his legs while he is sitting. He is not pulling to a stand on his own yet but when we help him walk by holding his hands or waist he tends to walk toe heel instead of heel toe. He is also still very low tone (weak through the trunk and lower body) which can be another indicator of CP. So all in all it was a very positive visit and now its just a waiting game. Once Nathaniel starts pulling to stand completely on is own and cruising on furniture we have to make an appointment to go back and see Dr. Leppert. At that time she and the Kennedy Krieger PT person, Liz, will decide if Nathaniel needs braces on his ankles to assist in foot development and walking. They will also reevaluate him and decide if CP is still a possible diagnosis.

They did take all of Nathaniel's measurements and here are the stats (16 months old):
Weight: 19lbs 10oz - 50% on preemie chart
Height: 30 inches - 75 % on preemie chart
Head: 47.5cm - 80% on preemie chart

He is still the most wonderful and perfect little boy in his mommy's eyes! I just hope and pray that he continues to develop and with the help of all our resources we can provide him with the best care and opportunities possible. We were told from the very beginning that preemies don't catch up until sometime between the ages of 2 and 3 so we have a ways to go. And I thought the roller coaster stopped when we left the NICU - boy was I wrong! I don't think it ever stops after you become a parent! hehehehehe