Shriners

Today Peyton had an appointment at Shriners to have her legs looked at. I am sure some are reading this and are thinking legs, what? Peyton's legs have been causing her pain since last summer. So her neurologist referred her to Shriners because she was concerned. I have to say Shriners is an amazing hospital. A very well run facility. After having Peyton looked at they feel that her joints and muscles are too tight. So we are supposed to help her stretch morning and night. They also felt that she is developing "knock knees" which will hopefully straighten themselves out. She is supposed to start in a vitamin d supplement to prevent rickets. They feel that her medicine is depleting crucial vitamins which is causing problems. But over all her legs look good. She will go back in 3 months to see if there is any change. I am just so grateful that she has the team of doctors she does now. It took us so long to get her to people who would truly listen. It is such a relief to feel like there is a " team Peyton" of doctors trying to help. On a side note Emma has been sleeping in Peyton's room because it is a comfort for Peyton while she is going through this change. I could hear Peyton crying so I went to go and check on her. As I got to the door I Peyton stopped and I could hear Emma singing to her. It was so sweet. Emma has been such an amazing big sister for Peyton. Peyton has been scheduled for a sleep study with an EEG in February. It is so crazy how much her neurologist has scheduled and had done in the short amount of time since her first appointment with her. Feeling very grateful tonight.

Meds

Peyton's neurologist called me on December 30. She had been thinking and wanted us to change Peyton's medication. She strongly feels that it is a major part of Peyton's problems. Her brain is constantly going. Which is why if you know Peyton at all she never stops. So we started the med change yesterday ( Monday). It is so heartbreaking to watch the kid you know change. She is so temperamental. Today just one example she decided that the baby gate was " stupid" and in her way. Typically the Peyton we know would just climb over it. The Peyton transitioning on meds decided she was mad and was going to kick the gate down while yelling " you stupid gate". Later tonight she took a permanent market and colored all over the walls. Which is typical. No shock there. But after I saw it told her no she ran and grabbed a towel. She said " I clean it mom " " sorry mom". When she couldn't get the marker off she turned to me with tears in her eyes and said " I can't mom" "I can't ". She then started to kick the wall and it was " stupid". At times it is funny, she will say really funny things. But it is breaking my heart. It is clear she feels different and doesn't know what to do. Hopefully once the transition is done she can feel better. She hasn't had any break through seizures which is good and hopefully it stays that way. She is still waking up at night which will hopefully change.
Peyton is truly the strongest little girl I know. So if you see us out and about be patient and remember she is having a hard time.