Things my neurologist told me.

My doctor told me that I am doing really well. I am having some problems with the right side of my body. It's not developing as fast as my left. I use my left hand to grab things but don't really like to use my right. I can fully extend my left arm but not my right. I also don't move my right leg as well as my left. This all means I have to work really hard in therapy so I can get the right side of my body working better. The reason I'm having this trouble is because of the damage done from having so many seizures. Good news is it is possible for me to build my strenth on that side and I know I can do it. Other than that they put me on another seizure medication called keppra. I am still taking my clonazepam though. This new medicine has to get in my system before they take me off of my old one. They also said that I will probably have to start topemax next month to help control them. She said those two medicines work really good together. Overall she said these are very hard to control but I know we will get them under control. I don't have to go back to childrens for 5 weeks as long as I keep doing ok. I'm hoping this new medicine stops these spasms. Since I have been so good on all these trips to NOLA my mommy and daddy took me to the zoo after my appointment. It was lots of fun. It felt so good outside that I slept most of the time we were there. My brother had lots of fun running around. I posted a pic so you can see how relaxing it was. You know I will keep you updated so keep checking my page. I love you and thanks for continuing to pray for me!!!!

My new play area!!!

I have had lots of evaluations this week. I had my physical and occupational therapy eval yesterday. I am not as behind as what my mommy and daddy thought. I am currently on a 5 month level. That's only 2 months behind and the last 2 months have been very hard on me. The 1st month I was in and out of the hospital and the 2nd month I was on ACTH injections. So we are very pleased at how well I am doing. The only thing that I am not doing that a 5 month old should be doing is rolling over. Even though I can't fully roll over on my own all I need is a little help. I'm sure I will get it very soon. My mommy has made an area in the house for me to play and build my strength. We no longer have a kitchen table but I do love my new play area. It even has a thick mat so that when I have my spasms it doesn't hurt when I hit my face. My therapist said it is very important for me to play on my tummy. I haven't been able to do that because of these spasms. You see everytime I would have one I would hit my face on the ground. Now that I have my mat it doesn't hurt when I have one and I get to play on my belly. I start private OT and PT next week at North Oaks. I also had a meeting with early steps today. I will start speech therapy and either OT or PT with them in about 2 weeks. Just depends on what they can offer me. My mommy and daddy decided to go ahead and start private therapy so I could start getting help immediately. It is very important that I start early intervention as soon as possible. My neurologist was not happy that I hadn't started yet. Well I get to tell her tomorrow that I'm finally getting some help. My appointment is very early in the morning. We have to be a childrens for 8:30. I well let you know what my doctor says as soon as possible. Please pray that I get a good report from her.

Look at what I can do!!!!

Look at me!!!! I'm able to play in my jumperoo again. I haven't been able to sit in it since I was 3 months old. I am starting to do so many new things. I am putting weight on my feet for several minutes at a time. When I'm in my jump I can turn a complete circle while jumping up and down. I can also ride on my mommies hip for several minutes at a time. My mommy and daddy are so proud of me. I have also found my feet again and boy do I love kicking my legs and watching them. I have updated my slideshow of some pics of things I have been doing. My eyes still look weak because of the amount of clonazepam I am on. My doctor increased it the other day and it has made me drowsy. It has helped with my spasms though. I am only having about 10 a day. Thanks you again for praying for me. When you pray for me today please thank God for what he is doing for me and pray that I will continue to get better. Also say a pray for Brynn's mommy and daddy and everyone else in the family. She went to see Jesus today. Now she is not in pain anymore. We love you Brynn and we know that heaven got a sweet angel today.

We just received some awesome news!!!!!

So the specialist just read my EEG and said the following. My background is normal, my sleep patterns are normal, and there is no sign of hypsarrythmia. The sign of hypsarrythmis is what originally diagnosed me with IS. On a scale of 1-10 I am 1.5 Hooray!!!!I"m so excited. My mommy and daddy are so happy we are witnessing a miracle. The only thing wrong with my EEG is there are still spikes of seizure activity. This means I'm either having other types of seizures, my infantile spasms are slowly coming back, or they are stopping and just haven't completely stopped. Only time will tell. We did get my genetic test back and it was normal. Now all my test are in and all are normal. This is a big sign of relief for my family. Please continue to pray that my seizure activity stops and that I continue to develop.

EEG results

My EEG was actually a little better than my last one. You could see normal sleep patterns which have never been seen before. This is excellent news. My doctor said we are going to wait a week and see how I do. Even though I'm still having spasms they are not as intense so this is good. If they get worse or more intense we may have to do another round of ACTH. My doctor also said I could be developing another type of seizure. If so then we will treat with a seizure medications. We just have to wait and see. So even though I'm still having spasms its ok as long as I start to develop. Its just a wait and see process. I am grabbing toys now and reaching for things. I only hold them for a second but wow isn't that amazing:) I will update you as much as possible this week to let you know how I'm doing. We do go back to the doctor next Wednesday to see what we will do next. My mommy has my prayer cards now, so if you want some to pass out to your friends and family just email her. monica.pailet@gmail.com I love you all and thanks for your prayers just look what they are doing!!!!!

I hope everyone had a good holiday. I sure did. I went to my Paw and Marna's house Saturday and then church with my PaPa and RaRa Sunday. After church we went to my PaPa's house and ate lunch with everyone. I was such a good baby. I laughed and talked to everyone. I am feeling much better now that I am almost done with these steroids. I did go to the pediatricians office today. My blood pressure was great and they did more blood work. When we left the pediatricians my mom took me to her work. We brought everyone out there a thank you note for the gift that they gave us. We also got to see alot of them and thank them. I am so blessed to have so me people that love me and want to help me. Thanks you to all mommies friends for everything you have done for me. Well now we are just waiting for Wednesday. My EEG is at 10:00 so I will let everyone know what my neurologist tells us. We will have a new plan when I leave childrens. Please pray that my EEG is ok. I love you all and will update as soon as I can on Wednesday.

Happy Easter!!!

Sorry its been a few days but I've been a very busy little boy. Wednesday I went to my pediatrician's office and my blood pressure was great. I slept the whole time I was there. You see I'm getting use to all these doctor appointments. They also said that all my blood work came back normal. I had to go back yesterday though because they are closed today. When they checked it yesterday it was a little high but nothing to worry about. I don't have to go back again until Monday. I get to enjoy the Easter holidays. I am feeling much better now that I am almost done with the steroids. I am smiling and laughing and getting my personality back. I am still having those crazy spasms and they are still making me cry:( My mommy and daddy are anxiously waiting for Wednesday when we decide what we are going to do next to try and get these under control. I hope everyone has a great Easter and I will update you on Monday.