Here I Sit

Here I sit in a hospital bed watching my sweet Peyton sleep next to me. They have ceiling tiles that have been decorated by other children that have stayed in the room. There is one that says "be brave". How fitting for Peyton. She was admitted yesterday because she has been sick for the past 8 days. She was severely dehydrated. They have her on an IV. We are waiting for all the blood work to come back. It is so hard to watch her go through this. To watch the panic in her eyes if I stand up to go to the bathroom. She does not want me to leave her side. It is crazy to me that she will be 3 in August and she has already been through so much. I try to remember that there is always going someone who is worse off and some that are better off. Everyone has their own things that they have to go through. This is ours. It may not seem like a big deal to some but to us it is. That is why I love the quote " Be Kind. Everyone you meet is fighting a hard battle." -Marjorie Pay Hinckley. What someone else is going through may not seem like a big deal to you, but for them it is.

Sleep Study

On February 3, Peyton had her sleep study/ EEG at Primary Childrens. She was such a champ as always. She had a typical night of sleep for her which meant waking up a lot. I was so relieved that she acted there, the way she does at home.

                               
Dr. Kerr called with her results. She had 72 interruptions in her sleep and only 1 was a seizure. Most of the others were because of her tonsils/ adenoids. She also mention that her brain looks a million times better on this medication in comparison to the EEG from October. What a relief. So Peyton has an ENT specialist to discuss getting her tonsils and adenoids out. Peyton has her good and bad days. Many more good days thanks to the med switch. Hopefully it continues that way. I am just grateful that her neurologist took the time and invested in helping her.

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.