I'm 2, I'm walking with my walker, and the plan for Detroit :)

I'm 2!!! My 2nd birthday was August 25. My family came over and we had cake and ice cream. It was alot of fun. My Aunt Mendy made me a Mickey Mouse cake and I loved it. My favorite part of the party was playing in my playroom with my cousins. Thanks to everyone who came to celebrate with us.

I've been doing really well lately. My seizures are still the same but I continue to do new things. Just this week I began to walk some using my walker. My mommy has to stand there but hey I'm doing it. It's AMAZING. I attached the video for you to see. I don't like it but I'll get use to it.



Ok so we have our dates for Detroit. They originally told us that it would be November before we could get an appointment. Well they called and my appointment is at the end of September. We are so excited that we do not have to wait until November. We will leave September 20. I will have a PET scan on the 21st, a AMT PET on the 22nd, and then an appointment with the neurologist on the 23rd. I will not have to have another 48 hour VEEG since I just had one in Boston...Yay!!!!! My mommy and daddy will be going with me this time. My brother is going to stay home with my MiMi. We were able to find a nonstop flight from New Orleans to Detroit for a reasonable price. I am 2 now so my mommy and daddy had to pay for my flight for the first time. Not fun but we will have more room on the flight..LOL We were able to put in a request for the family housing in Detroit, so hopefully they will have availabilty. We should know sometime next week. Please begin to pray for my trip. We feel like this is our last chance at finding someone that can help get my seizures under control. We believe this is the next step we should take and we are trusting that God will continue to guide us on this journey.

A few pics and new therapy tools.

Well my mommy went back to work last week so we have been very busy. I'm doing great. I haven't cried for her once. Right now I'm staying with my mimi and I just love her. My seizures have been about the same. We did increase my lamictal again but haven't noticed any change. I'm on 20mg twice a day and we were hoping to see some improvement by now but we will see. My mommy did get me a new therapy toy. I'm trying to push behind things which is great but I'm too tall for the push toys. Well my Granny B bought a grocery cart. Mommy tried it out with me and then she went and bought me one. It is the perfect height for me. We put my mickey mouse in the seat and a bag of rice in the basket. The rice helps weight it down for me. I don't like it that much but I can walk behind it. If you notice in the picture I'm taking a step with my right foot :) So even though I don't like it, it is great therapy for me. I haven't heard from Detroit yet but as soon as I know something I will let you all know. I hope you enjoy the pictures of me playing in the mud. Can you tell how much I loved it :) Mommy said its great sensory therapy too.

Finally some results for you!!

Sorry it took so long but my trip to Boston was not a fun one at all. I did great on the plane ride and slept great in the hotel room. The next day is when it started. I arrived at the hospital at 12:00 for a 1:00 admission. Since we were early mommy took me to the cafe to eat. We went back to the admissions office at 12:45. They didn't take me to my hospital room until 3:00. When I got to the floor they said my room wasn't ready. They put us in a holding room until about 4:30. While I was in the holding room they came and got me to put my leads on. I always hate it but I gave them a hard time. I screamed the entire 30 minutes. It was awful. I kept looking at mommy to help but all she could do is lay next to me and hold my hands. As soon as I was done I started pulling at my head. They said that most kids forget about it after a while. Well I didn't forget. I kept pulling at it the entire time I was there. I did get the hat off at one point but they came and put it right back on. This made me really mad. Once we got settled in the room, I fell asleep. I was worn out from all the fighting and crying I did. Things were finally a little better and then they came in for my IV. It was 11:15 at night and I was extremely tired. I don't know why they waited so late but they did. So I started kicking and screaming again. They had to get a blanket and wrap me up so I couldn't fight them. By this point mommy and I were both crying. We tried to sleep that night but we didn't sleep much. The next day was suppose to be my PET scan at 8:00 am. Well I was having so many seizures that they decided at 11:30 that they couldn't do the scan. Did I mention I couldn't eat during this time and it was all for nothing. They let me eat and they said we would try the test the following day but not until 1. So the plan was to wake me up early, keep me awake, give me ativan, and let me sleep for two hours then do the PET. Well they woke me up way to early that morning, and I gave my mommy fits all day. I was tired and hungry and couldn't do either so I was just mad. They finally let me go to sleep. I slept about 30 minutes and they gave me the ativan. And would you know 30 minutes later I was wide awake having seizure after seizure after seizure. They decided to go ahead and do the PET. They would just have to read the results differently. Now the results part. The on call doctor told us some horrible things that I'm not even going to share because they were untrue. All it did was make my mommy cry. When my neurologist came in and explained things mommy felt much better. He said that my EEG didn't look much different than October. It actually looked a little better because in October I was having over 200 a day. This time I was having about 100 a day. He said the seizures are coming from the left side. They still can not identify a focal spot but they are left sided. I did have 3 from the right side in a 48 hour time. Not the news we wanted but that's very few considering the time frame. They are not sure exactly what type of seizure I'm having. According to the EEG it looks like tonic but tonic seizures usually last longer than my 1 second seizures. They are saying its probably more like myoclonic jerks because they are so short. Either way it doesn't matter. I'm having way to many seizure a day. The PET scan did not show anything abnormal. We pretty much expected this because we couldn't get the test run like we wanted. So what now. We are going to repeat the MRI and 48 hour EEG again next summer. In the meantime we are being referred to a neurologist in Detroit. The neurologist in Boston said that this doctor is the best for children like Jadon. He said that he can do a different kind of PET scan on Jadon that Boston can not do. He said that if anybody can help him it would be this doctor. My mommy already knew about this doctor when he said his name so we knew right away we wanted to go. So we will be traveling to Detroit sometime soon. Everything about me is so rare and different. We are praying that this doctor will be able to help me. Overall the doctors in Boston were impressed with how well I had developed since they saw me last. According to my EEG and the frequency of my seizures I really should not be doing as well as I am. So God is definitely answering our prayers.

Poem

My mommy is part of an online support group of families that have IS like me. Someone posted this today and she wanted me to share it. She said I'm such a blessing to my family. She just wishes she could get some relief for me from these seizures so I don't have to suffer. I promise I will update my page with the information from Boston. My neurologist is going to call us tomorrow with the final results and plan. Thanks for praying for me and enjoy the poem.

A Special Child

You weren’t like other children,
And God was well aware,
You’d need a caring family,
With love enough to share.

And so He sent you to us,
And much to our surprise,
You haven’t been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We’re proud that we’ve been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who’s taught us many things,
But most of all- “Real Love”

Sorry I haven't been able to update. I'm not happy and we are not getting any good news. All bad. I had to fast yesterday for my PET which didn't get done bc of frequency of my seizures. So now I can't eat again today and my PET isn't until 1. I'll update as soon as I get definite results. Please pray for us. My mommy is exhausted and I'm just mad and ready to get out of here.

Sent from my iPhoner