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.

Moving Forward

Today Peyton had an appointment with Dr. Kerr to get a second opinion about all that has been going on with her. I have been so nervous for this appointment. Nervous that once again Peyton would be written off and completely ignored by another specialist. This appointment could not have gone any better. Dr. Kerr was kind, concerned, and proactive. Just what we need. Someone to look outside the box and get to the bottom off all these problems. She came up with a game plan. Peyton will do a sleep study with an EEG at Primary Children's. This will help us get to the root of her issues at night. She will be changing Peyton's medication. She feels this will help with Peyton's low weight issue as well as decreased appetite. She will also go to Shriners Hospital to have her legs evaluated by an orthopedic specialist and also have a swallow study done. I know this seems like a lot of testing but it is about time someone stepped up to help us get to the root of her problems. So no answers, but there is a game plan. HALLELUJAH!

Vexed

I was going to update this yesterday but decided I had better not. It just would been a list of profanities. I called to check on the test results for Peyton. The nurse called me back and said she spoke with the neurologist and  her EEG was abnormal but they didn't see any seizures... Um excuse me what? ( Adam and I clearly saw at least 5 while she was sleeping over the three days and her previous sleep deprived EEG showed it was abnormal with episodes and where it was coming from ugh). So I said that doesn't make any sense to me. She is still having problems at night so what am I supposed to do? I was told to talk to her pediatrician. At this point I was irate. Are you freaking kidding me. It feels like because she doesn't fit into anybody's box of diagnosing no one is willing to take the time to help Peyton.( Thank heavens for her pediatrician who is amazing). I called her pediatrician who had us make an appointment for today. I told her the situation and what I was told. She and I agreed that there needs to be a second opinion. I was able to get her an appointment with an amazing neurologist in December. I am pretty frustrated at this point but also understand that it's part of the game. I am not going to be saying any specialists names unless someone asks me directly. I don't feel that they are necessarily doing a bad job I just feel like no one is willing to invest the time to help us get it figured out. So it's not the awesome Yay we got answers update I had hoped for but it's an update.

Here It Goes...

I honestly don't even know where to begin with this blog about this sweet girl. So I will start at the beginning.

Here is a picture of Peyton and I on March 1, 2013. She had just had her 6 month shots. (She had been sick so she was actually almost 7 months old). The next day on March 2nd she had her very first seizure. We had been at the mall all day and when I came home sat her on the floor to play. I went down stairs and when I came up, I saw my sweet girl having a seizure. After what seemed like forever but was probably only a minute or two, she stopped breathing and turned blue. I will never forget scooping her up screaming for Adam and meeting him halfway down the stairs and saying "she's not breathing". After handing her to him I ran to call an ambulance. I now know why they teach you in grade school what to do when you call 911. I just kept saying she's not breathing and giving our address over and over. By the time the ambulance came she was breathing again. They took her and I in the ambulance to the hospital. She was scheduled her first EEG a few days later. We meet with a neurologist who said that her EEG was normal and she likely had a reaction to the immunizations. She said that it wasn't likely that Peyton would have anymore seizures. I remember leaving that appointment feeling relieved but also feeling like this wasn't the end either. After that appointment it stared once a week Peyton would be playing and then all of a sudden she would just fall over and be like a rag doll and have a zoned look. Then it started happening more and more frequent. Her pediatrician wanted to be sure it wasn't her heart.

Once we got the results that everything was good with her heart it was back to Primary Childrens to meet with another neurologist. By the time her appointment came around she was having those small types of seizures a few times a day. We met with the neurologist I showed him the log of every time I saw peyton have a seizure. What she was doing, where she was ect. He decided that she needed to be admitted for a 3 day EEG at the hospital. 

  After those 3 days they were able to catch a seizure on the EEG. She was diagnosed with epilepsy. They said that is comes from the back left side. She has partial seizures. We were told that it is something that she may grow out of, kids do it all the time.  They put her on the medication Keppra. Other than having to up the dose every now and then she had done pretty well on it up until the past little while. She has begun having seizures at night. I knew that she was having problem sleeping so I mentioned it to her neurologist at an appointment. He was immediately concerned and ordered an EEG. When the EEG came back abnormal which we expected he then ordered a 3 day EEG at home with video.

Getting them on her this time was pure hell. When they do it at home they use this glue. To get the glue to dry quick a cold air compressor thing is used. She was screaming and crying. I was crying, her poor baby brother was crying (Thank you Courtney for coming to the rescue). Once it was on she did well keeping it on and loved her "backpack". I knew that she was likely having seizures at night but I didn't know that they were so frequent and pretty bad. She has also started have a different type during the day that are very subtle and quick. So now we are just waiting for the results. We should get them on monday. 

It kills me to have to watch this little girl go though all the things she does and she is only 2 years old. She is the sweetest little firecracker around. I started this blog to be an outlet and share her story, her everyday battle. To hopefully let other parents out there know that you are not alone, you don't have to do this alone. Epilepsy sucks and that is all there is to it.