Finally some answers to my righty foot problems!!

As you can see in the picture, I have been growing like crazy these last couple of months. As far as school goes I continue to progress and learn new things daily. I even tested out of speech language. I only need speech articulation now. Yeah having half a brain doesn't slow me down. I started having problems with my righty leg (this is what I call my weak leg). It started giving me problems at the beginning of March. I went to my brace doctor. He wanted us to see a sports medicine doctor. It was going to take over a month to get in. Well as we waited my foot continued to get worse. It got to the point that I couldn't walk. So off the ER we went. They did x-rays and thought I may have fractured my foot. They sent me home with a splint and told us to follow up with the orthopedic doctor the next week. We went to the ortho and she decided to cast my foot because it was giving me so many problems. The cast was done for 2 reasons. One to stretch my tendon and the other to help my leg rest. I wore the cast for 2 weeks. Once we removed it, I was able to run and jump that very day. I did really well for about a week and a half. It then started giving me problems again. Once again I could barely walk on it. We went back to the ortho. They ran more test and still couldn't find anything wrong. She decided to remove my brace and see if I got better. She thought that I may be overpowering my brace and causing shin bruises. We removed the brace and my foot didn't get much better. I would have days that we thought it was better and then bam I couldn't walk. We finally got some answers today. We went back to my brace doctor. This is the doctor who was able to get me to walk well, then run, and then even jump when others couldn't. We have been seeing him since I was 3 and we really trust him because of the success that we have had with him. He doesn't think I need a different kind of brace. Let me just say if he ordered me a new brace he would make more money. He really wants what is best for his patients. He believes I'm having muscle cramps because I'm growing so fast. The problem is I'm growing rapidly and my muscles aren't able to keep up. The brace is holding my foot up so when I have a cramp I'm unable to get release from the cramp because of the position my brace has my foot in. This then causes lots of soreness to my muscle which is causing me not to be able to walk well. That is why I'm walking on it some and then all of a sudden not able to walk on it. This actually makes the most since to us so far. Is this what is happening? Only time will tell but we believe this is what is happening. So the plan is to go see an orthopedic surgeon in Baton Rouge. That doctor will be able to tell us what to do next. Most probably botox but we will have to wait to see what he says. We are hoping and praying that we found our answer to my leg problems and that I will get some relief soon. If you have ever had a cramp, you know how much that hurts. Oh and to not be able to release it just makes it aweful. My doctors said I'm unbelievable. I have to be in lots of pain and I continue to smile. My family aches for me but we all know this is just part of my healing process. Thank you all for your prayers and I will update again once we see the next doctor.

No news is good news!!

I'm so sorry I haven't updated my blog since August. I have been so busy. You know Kindergarten is hard work. The good news is all I have is progress and great news to share. I will go back to August 2014 when I started Kindergarten. I did very well on my entry test into Kindergarten. I scored in the middle of the Kindergarten students. I was in the lower middle but I was in the middle not the lowest. I walked into my Kindergarten class the first day without any problems. I told my mom bye and went right to my chair. I'm growing up to be very independent. My mom walked me to my class the first two weeks and then I asked to go by myself. Mom said if I could show her how to get there, then I could do it all by myself. Well I have been going to my class all by myself ever since. I tell ya I know my way around that school. September rolled around and I started pedaling my bike by myself. My mom would hold the handle bar for me. Well that only took a few days and then I was off. Steering and pedaling all on my own. This is a difficult skill for a hemi child. You don't realize how much cross over your brain does for your body to function. I do not have that cross over so I have to learn to make my body work without it. Well I'm doing an amazing job. October passed and it was a blast. I got to go see Mickey Mouse in Disney World. My dad worked so hard to bring me there. It was such a fun trip. I just love Mickey Mouse. In November, we visited our neurologist in New Orleans. She said I'm doing fantastic. She made we run down the hall. My mom said she can remember hearing a child run down the hall during one of our first visit with our neuro. She couldn't help but wonder if I would ever get that chance. Well not only did I run for her but I read the word that she wrote down on the examine table paper. She was impressed. We made some changes to my focalin. (The medicine that helps me focus). We have actually been able to decrease the amount of focalin I'm on. We started taking juice plus and we cut back on sugar. This allowed us to decrease my medicine. I was just to medicated. Sometimes I would just sit there and not talk. Since we decreased it, I am participating more in class and I'm doing better academically. In fact I'm doing so well academically. I can now read some sight words, I can sound out words, I can tell you the sounds I hear in a word, I can count to 100, I can add and subtract using manipulatives, and my comprehension is unbelievable. You can read a story to me without pictures and I can tell you all about it. It's just amazing. My Kindergarten teacher is awesome and she is enjoying having me in her room. I just love her. We just had my middle of the year test and I moved up in all of them. In fact I was at benchmark in math and below in ELA but not unsatisfactory. I moved from a score of 17 on one of my test to a 107. I needed a 122 to benchmark so I was close. These are timed test so its hard for me to keep up with the speed but hey I did great. When you think of how delayed I was at one time. Such as not walking until I was almost 3 to where I am now at 5. The reality of the miracle we have been shown is evident. In fact I had my 3 year seizure free birthday on January 10, 2015. It has been 3 years since my last seizure. My mom made a video of my progress this year. I'm posting it below for those who have not seen it. Thanks for all your prayers and support. I was reminded today of just how much you all have helped me. On this day 3 years ago, I was admitted to the hospital for 105 fever. It was a scary day but it was the last time I have been admitted to the hospital for sickness. I was always in and out of the hospital and now it has been 3 years since my last admission. WOW!! Each of you have helped us so much on this journey. You never know what life will bring each day. Love each other daily!! I will try to update sooner next time but know when I don't update its all good :)

Tonsil surgery update.

I had my tonsils removed Friday. I had to have blood work Tuesday and I did great. I didn't even cry which was awesome. We have such bad memories from blood work when I was younger. I'm doing really well post op. I ate some macaroni and cheese Friday night and I'm drinking plenty of liquids. The doctor said my tonsils were so big and infected that they had to be hurting me on a daily basis. Of course I never complained. The worse part for me has been the coughing. When I start to cough is when the tears start. Each day gets better. In fact last night I scared my mommy because I slept so good and quiet. In the past you could always hear me breathing at night. Well last night you couldn't hear me at all and my mom kept waking up to check on me. I woke up this morning and I feel great. I haven't had my pain medicine since yesterday around 7pm. I'm such a tough little guy. Other than that I did complete my 3 weeks of intensive therapy. I had a rough start the first 2 days but I did well the rest of the time. I missed 2 days because I wasn't feeling well but I did well the rest of the time. I'm taking a break for the next 2 weeks from therapy and then I will start going back weekly once school starts. Speaking of school my mom has to go back to work tomorrow and my brother and I go back Thursday. I just go that morning and then I will start the following week after Kindergarten testing is complete. I want to go back to school, but I want to stay in PreK with Ms. Sanders. I'm sure I will like my new teacher once I get started. I'll let you all know how school goes next month. Thanks for always praying for me! I'm leaving you a picture of my brother and I at the pediatricians office the other day. This pic was taken at the beginning, it wasn't long until we took these girl looking gowns off. LOL Anyway we went for our well checks. We have both grown 3 inches since last year. Our pediatrician said we are growing and doing well!! She was so impressed with how well I was speaking. She just couldn't get over how well I'm doing. She said I'm an impressive little boy :) If you look at the picture below, you will notice a cross. Well during the eye exam, the nurse asked me what that was. I said it's on a doctors badge. She just laughed and said well you get extra credit for that one. I've heard it called several things but not that. Lol

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Unexpected but needed update!

I know I said I wasn't going to blog until after my 3 week therapy but I have a few new things and a prayer request. First of all I'm loving every minute of summer. We have been spending a lot of time at the library. We are part of the summer reading program and we have almost met our summer reading goal! I love books and now that my brother can read, he reads them to me every night. We haven't gotten to swim as much as we would like but we are finding time to swim. Swimming is such great therapy for me. Speaking of therapy I have been going every Thursday for my 2 hour therapy. I haven't been doing all that great. I've started to not want to do therapy. So please pray for us. We start my intensive 3 hour a day therapy Monday through Friday for 3 weeks on Monday. This is going to be hard on me but the outcome is going to be worth every minute. I'm still getting stronger everyday. I can now climb the ladder to get into the playhouse. I can climb up on the gate of the fence to see my horse. I can also push a buggy at the grocery store with both of my hands while controlling which direction it goes. I'm very aware that my right hand does not work correctly. I've even cried about it and it just breaks my moms heart. Mom says we are working on making it stronger and that I can find other ways to do anything I want. I try so hard to use my righty. I rarely have to be reminded anymore. You will often see me using it as an assistant hand without being told. I also received some not so great news this week. I have to have my tonsils removed. We are down for surgery on August 1. This will give me just enough time to recover before I start Kindergarten. Yes I know its just a simple surgery, but everything is bigger when it comes to me. I had a hard time when I had my adenoids removed and I was very close to having to stay the night. We are hoping I will do better this time but I hear tonsils are little more involved than adenoids. So your prayers are appreciated. I hope everyone is having a great summer. We are in the process of moving out of our house. We are suppose to close on July 15. As you can see we are staying busy busy this summer!!! Thanks again for the prayers. Love, Jadon

It's Summertime!!

I'm excited summer is finally here. I get to stay home with my mommy and brother all summer :) I had a great PreK year. I had wonderful teachers, therapist, and paras. I made HUGE gains. I surpassed the goals set on my IEP ( individual education plan). The most exciting test was my getting ready to read test. This test was given at the end of the year and I scored a 20 (14-20 is considered average). My math test puts me a little below average but not by much. Here are some things I can do. I can sequence stories. I can name the characters, setting, and events to a story that is read to me. I can identify the beginning sound of a word. I can orally count to 30. I can count objects up to 20. I'm finally able to keep up with my peers while walking in line. So I'm ready for Kindergarten. I don't want to go to Kindergarten but I'm going to have a great teacher next year. I saw my neurologist today at Children's in NOLA. We brought her a copy of all my end of the year test and she was amazed at the progress. I'm a miracle to her as well as everyone else. She loves to hear about my progress and she always has fun toys for me to play with during our visit. We are making a small dosage change to my focalin but that's about it. She did confirm that fine motor is so hard for me because I'm having to teach myself how to write left handed. I'm not a natural lefty. Can you imagine having to learn to do everything with your left hand if you are a natural righty? Well its hard for me at 4 but we know it will get better the older I get. She says I'm doing wonderful and we will see her in another 6 months. Neurologist appointments use to be so stressful for us. They are now enjoyable and full of progress. We are so thankful for that. My mom said she can remember at one of our very first neurology appointments a little boy running up and down the hall as she sat in the chair holding me while I had seizure after seizure. She can remember wondering if I would ever be able to walk or run. Well I did both at the hospital today praise God. It's been a long journey but the journey is far from over. It's actually just beginning. We can't wait to watch me grow, learn, and overcome the impossible!!! Thanks for all your prayers! I hope you all enjoy your summer. I know I will!! I will blog again in July after my 3 week intensive therapy. Please pray we get great results from it.

A much needed update!

Wow! Where does the time go? Anyway my therapy has been going great. You can see me in my suit in the pics below. Pretty cool stuff. I've moved up three times already with my weights. I'm getting so strong. Unfortunately I will have to continue to wear my brace. My tendon has loosened up on my ankle but I still need the brace support. I will probably have to wear it a while but I really don't mind wearing it. I already have my new brace in and my new shoes. I've only had it about a week and we can already see improvements with my balance and gait. We also found out that we did not get into the study in California. They took 7 kids and decided to go with kids who are a little older than me. I'm sure there will be other opportunities that come up in the future. We are having a 5K race May 17, 2014 at North Park. All money raised will go to the hemispherectomy foundation. This money is used for research for kids with hemispherectomies. We will have a donation jar at the park for anyone who did not get a chance to sign up. Just bring a donations and we will see you there. I will be doing the 1 mile fun run so bring your kids and let them walk with me!! We will start the race at 8 so we are asking everyone to be there for 7:45. I'm also playing tee ball. I left you a picture of me running to first base below. It's so amazing to watch me play. I get distracted but overall I'm doing really well. Talking about progress I have been doing excellent in school. I pretty much know all my letters and their sounds. I also know most of my numbers. This past month I brought a book home from school and read it to my mommy. I had memorized the book but its still amazing. I looked at the pictures and knew what the words were on that page. I'm also beginning to write my name. I can write a J. Writing is so hard for me. My mommy thinks it's because I was right handed and now I have to learn to write with my left hand. Plus I already have motor delays. So when I wrote a J my mommy couldn't believe her eyes. As you can see things are going really well for me. I have had a few sinus infections and strep throat but I think we all have been sick this past month. Thank you all for continuing to pray for me. I'm looking forward to summer and getting to stay home with my mommy and brother! Sending lots of love and hugs to you all, Jadon

Oh I almost forgot, I posted a video of the fox 8 interview that we did a while back on my blog. You should watch it. It reallly shows how far I've come!!!

Therapy, Therapy, and Sports!!!

Lots of new things happened this month. First off my mom was able to get me into the constraint therapy in Alabama. They have a long waiting list so we are on the list for the summer of 2015. Our insurance is covering a good portion of the cost but we will still have to pay about $1400 plus travel expenses. We still are not a 100% sure if we are going to do this therapy but we do want to be on the waiting list. I also started private physical therapy again at innovative suit therapy in Mandeville. In my opinion this is the best therapy center in our area. We are going every Thursday for an hour and a half. At the facility they are able to work on my right hand while they do therapy basically on all my weak areas. One of the main reason we have gone back to them is because I am having to wear my brace again. We saw my brace doctor Mr. Mike at orthotics and Prosthetics ( by the way I think they are the best as well in case you are looking for someone in this area). He didn't want to put me back in my brace but the tendon behind my foot is starting to get tight. I have to wear it a month and do physical therapy. We will go back in a month and see what we are going to do from that point. The suit therapy that I go to is doing an intense therapy session for 3 weeks in the summer that we are going to do. It is 3 hours a day for 3 weeks. It will cost us about $400 for this therapy and we believe it will help me tremendously. We are also trying to get into a therapy in California this summer. It is a study that the brain recovery project is doing. They are only taking 10 participates so I don't know if we will get in but we are going to try. The brain recovery project is an organization that does different studies to see what therapies are beneficial to patients after hemispherectomy surgeries. Unfortunately there is not much research for children post hemi surgery. This foundation is doing these studies. We are so thankful for them because they keep us updated on the latest research that is being done. The study we are trying to get into is a robotic therapy. You can click on the youtube link below to see what I would be doing. It is a game that I would have to play using my right hand. It's pretty cool and interesting. If we get into this therapy, it would cost us $500 plus flights and room. The room would only be $10 a night. I will keep you updated and let you know if I get in. We believe that if God wants me into this therapy then I will get in. So lots of therapy things going on with me. It's expensive but we are trying to give me the best quality of life. You don't realize just how much you need two hands to do things until you can't use one. We know I will never have full function of my hand. It's impossible I do not have the motor cortex that controls that hand. We do know that I can get stronger and be able to use my right hand as an assistant hand but its takes lots of therapy and work. So other than therapy I have been playing soccer. Yes isn't that amazing. I'm attaching a few pics for you to see. I love being able to play with my brother. My mom is also signing me up for tball. I'm attaching a video for you to see. I'm pretty sure I will do fine playing. I'm really into playing sports with my brother right now. My mom says if I can find a way to play then she will let me. Its all for fun at this age!!! I also went to a Mardi Gras parade yesterday. I wore my headphones and I was able to enjoy the parade. It's the first time I was able to handle the noise of the bands. I now ask for my headphones. We have to work on getting me a different pair though. The ones I wore yesterday put to much pressure on my head and I nearly passed out. Yeah I scared my mom and dad half to death but as soon as we took them off my color came back and I was fine. I had them on for about 2 hours before this happened. We have to find a better pair for me that aren't so tight. I hope you enjoy the pics and videos. Please pray for me and that God will lead me in the right direction for all these therapies. I started praying for Him to lead us to the right therapies and He has definitely lead us to some amazing therapies. Thanks for all of your prayers!!

Pics of me kicking the ball and throwing the ball!!! My mom never dreamed she would be able to see me play soccer. God is good!!!




Look at that one handed hit for a 4 year old. Yeah mom says I'm amazing, I'm just finding ways to do the things I want to do!!!


< This is the video of the therapy in California that we are trying to get into!!

We love Detroit Children's Hospital!!!

We made it to Detroit and back. I did wonderful during the flights there and back. The flight back was delayed and we had to sit on the plane for over an hour before we departed. I sat down and was a very good boy the entire time. This trip was much more laid back than in the past. It was a very cold trip but I did get to see lots of snow. I loved playing in it and kept asking if Jacob could come play. I do not like being away from my brother. I also kept asking my mom if Santa lived here. I thought that Santa must live there since there was so much snow. LOL The first day we were there we settled in the McDonald house. We were able to bring a King Cake to the ladies at the house. Everyone kept trying to take it from us on the way there. We didn't have any appointments the next day so we spent some time at the Michigan Science Center. We had lots of fun at the center. I even got to hold a snake and a butterfly. Monday was the first day of appointments. We went to see Dr. Sood. He was the neurosurgeon who removed half of my brain. He is such an amazing doctor. He was happy to see how well I was doing. He said that since my language skills are basically caught up then that means my brain in working correctly. He said that he believes I will continue to progress and do well in life. On Tuesday I had a very important test. I had my first EEG done since I've been off medicine. My mommy watched it as I sat there and played and watched tv. She knew it look good but she didn't know how great it was. Dr. Chugani (neurologist) said that my right brain looked perfect and that my left looked like it should for someone who has had a hemispherectomy. That means I can stay off all seizure medication. It also means that my future looks great. He expects me to continue to progress and do well. This is huge for us. At some point we were just trying to stop the seizures so I could live and now they are expecting me to progress and do well. It's definitely a miracle!!! My neurologist did put me on Focalin to help with my attention. So far it has been good. I'm paying attention much better and my coloring is better. I also haven't had any side effects from the medicine. We are hoping it is going to help me. Oh and by the way its a pill that I have to swallow. Well I put it in my mouth and swallow it with my drink. Yes I'm only 4 and can take medicine like an adult. I'm awesome!! Our good news continued on Wednesday. We saw the pediatric hand surgeon. The hand surgeon said that I had more movement in my hand that any hemi kid he has seen. He said that by the time he sees them, their hand is curled down. The reason I have movement is because my hemi was done at such a young age. The best way to explain this is that you have two motor tracks the right controls the left side of the body and the left controls the right side of the body. When you are born the tracks haven't finished developing. In my case my seizures started so early that we believe my track started to transfer to my right side already. When my hemi was done they removed my motor cortex that controls the right side of my body. At that point the right brain had to control the movement on my left as well as my right. The younger this is done the more movement you have. So that's why I have more movement. A lot has to do with the time surgery is done. The main thing the hand surgeon said was that he could do a muscle transfer to give me a stronger grip. We can not do this until I get a little older. The reason is because I have to reteach the muscle to work in a different place. This would require lots of therapy and me understanding exactly what they want me to do and at this point I'm too young. So we will go back to Detroit in 2 years. We will see the hand surgeon again as well as get another EEG. I do not have to have anymore CT or MRIs unless we see a decline in development but that is not expected at all. We were very excited to get the results we got in Detroit. Everything looks very positive for me. They do want me to do constraint therapy in Alabama this summer. It is a 3 week program and it cost $2400. We are not sure if we are going to do this or not. We would hate to do it and it not work. If we knew it would help my right hand we would definitely do it but we just don't know. My mom is already talking to the therapist in Birmingham and we will see. I'll keep you updated. I'm attaching a few pics of our trip. Notice the EEG pic. I smiled the entire time. I never cried. I have such a positive attitude. Yesterday I got to go see my neurologist at Children's New Orleans. She couldn't believe how tall I have gotten. She looked at me and said" Jadon you are just a little miracle aren't you". We definitely believe that statement and coming from a neurologist who sees many neuro things it really meant alot to hear her say this. Thanks for all your prayers!!

Thanks for all your prayers!!

The Scar I Wear

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This picture is the scar that I wear everyday. Luckily I have lots of thick blonde hair to cover it up. It is the scar that saved my life. We were hoping that it would be a little thinner than what it is, but we are actually very thankful for this big ugly scar. It is the reason I am able to talk today. The reason I can walk. The reason I can learn. The reason I can develop. The reason I am alive and healthy. It is the scar that was made to remove half of my brain in order to give me life. Today is my 2 year seizure free birthday!! It has been 2 years since this scar was made. 2 years since my parents brought me to that operating room, turned everything over to the surgeons, and sat and waited with faith that I would never have another seizure. 2 years ago this was a very painful,sad, stressful, but hopeful day. A day that didn't seem real. A day that we wish no one had to go through. Today 2 years later, we celebrate with joy. The last seizure we have seen was on my way to the operating room 2 years ago. I couldn't go more than a few minutes with out any seizures before my hemispherectomy. And now today I am 2 years seizure free. Shout to the Lord for He is good. Thank you all for your continued support and prayers. We love each and every one of you and are so grateful to be able to share my story with you. You have all been apart of my healing process with all of your prayers and support. Here is a video that my mom made of my progress this year. I hope you enjoy it.

December update!!

I continue to do amazingly well. I did have my adenoid surgery and I did great. I had a little bit of trouble holding my oxygen levels in recovery but I finally pulled through and I was back to my normal happy self. I am such a joy to be around. I wish everyone could see in person how well I'm doing. I have such a sweet personality and I say please and thank you without having to be told. I can get complete strangers to talk to me and play with me. Don't worry I know that I can't go with strangers, I'm a mommies boy and make sure she is by me. One of the best things about talking to strangers is they don't realize that anything is wrong. They have no idea of my past. They think I'm a normal 4 year old. And yes in lots of ways I am like a normal 4 year old. In fact my language skills have basically caught up. The main thing others notice is my speech. I'm still working on my articulation skills, yes you can understand me but you have to listen close as I don't say all my sounds correctly yet. They continue to improve but I still have some work to do. Not all but some people will say something about it or say my child is having trouble with articulation as well. My mommy has gotten to where she uses this opportunity to tell my story. Hey you asked so you get the real story. 100% of the reactions so far are I would have never known that if you wouldn't have told me. Look at him, that's amazing!! Speaking of amazing we leave in 2 1/2 weeks to go back to Detroit. God always provides and we are ready for our trip. A wonderful family let us use some of their flight points to schedule our flights. Talk about relieve some stress. I'm so very thankful for this. My Aunt Mendy will be going with us to Detroit now. My dad is going to stay with my brother so that things can stay as normal as possible for him. Our rental car price has gone from $330 to $69 total. Now we wait until the day before to make sure we get into the Ronald McDonald house. I'm not gonna lie. We are nervous about this appointment. The EEG that will be done will give us lots of information as far as my future. We believe its going to be normal but its always a bit nerve racking when you have to have an EEG. By the way this will be my first EEG medicine free. We will also know if I will need surgery on my hand. We hate that I may have to have another surgery but we have to do what is best for me. This surgery will not be nearly as bad as brain surgery. So please begin praying for my trip!! I want to share a video of me using my right hand so you can see how I can use it. I can use it and I try really hard. It makes you sad when I say righty doesn't work right :( The main problem is opening and closing my hand. I have figured out that I can use my left hand to open my right hand and then I can grab things. My hand wants to automatically close so I can grab things. Once I grab it, I have to use my left hand to release it. As far as my left hand, my motor skills are getting much better. I can now draw a circle. I can color, stack blocks, and do much more. I'm leaving a picture of the blocks I stacked at school. I'm so thankful to have therapist at school that send my mom videos and pictures like the ones below. The gingerbread house picture is one of the projects I did with mom since we are off of school. If you look close you can see how well I did. I was able to pick up the little candies to put on the roof. I had a blast decorating it. Other than that we are really enjoying our Christmas break. Christmas was so exciting this year because I got it. I understood every part of it. I knew it was Jesus birthday. I was able to count down the days until Christmas. I sang Christmas songs. I made cookies for Santa. I woke up Christmas morning asking if Santa came last night. It was such a blessing celebrating the birth of our Savior. We are less than 2 weeks away from my 2 year seizure free birthday. Yes you are reading that correctly. 2 whole years since my last seizure. Thank you God!!!

Detroit details/Adenoid surgery/Modern day miracle!!

Wow! It's been awhile since my last update. First of all I'm still doing wonderful in school. I'm making more and more progress everyday. My speech is unbelievable. I sound so grown up now. I say anything I want to say and you can understand me most of the time. I love to perform and make people laugh. In fact, I had about 4 rows of people laughing at the LSU game the other day. I'm such a clown. I am also learning my letters and numbers. I can identify several letters, numbers, and letter sounds. I can also tell you the beginning sound of a word. It's so amazing to listen to me. I have several friends at school. I can tell you their names as well as all my teachers names and therapist. I'm getting so smart. In other news I have been fighting sinus infection after sinus infection since about March. I get better and then have to be put back on antibiotics. I went for my 2 week check on Wednesday and she said its time for my adenoids to come out. I have a constant sinus drip that is always in the back of my throat. This drip is causing the problems. Once we remove my adenoids I should start feeling a lot better. We also got the news that we have to go back to Detroit in January. We were planning on going this summer but Dr. C, my mom, and dad think its best if we go ahead and go back. I will leave January 18. We are leaving a day early because it is saving us $250 on airfare. We will stay at the Ronald McDonald house when there. I will see my neurosurgeon and January 20. I will then have a 3 hour EEG done on January 21st. I will see Dr. C after the EEG is over. I then have an appointment with a pediatric hand surgeon on January 22. This doctor will tell us if I need to have surgery on my right hand. I will then fly home after the appointment. My mom and I will be traveling alone this time. It's too expensive to fly everyone there. Please begin to pray that we will have a safe trip. Also please begin to pray for my test and all my appointments. The reason we are doing an EEG is to check to see how things are now that I have been off my medicine for almost a year. We are excited to see Dr. C and for him to see how well I'm doing, but we are also nervous about the EEG and the possibility of needing surgery on my hand. If I do need surgery that means we will have to go back to Detroit for this surgery. Also keep me in your prayers this Tuesday as I have surgery to remove my adenoids. It's never easy when you have to be put to sleep. You would think that after all we have been through this surgery wouldn't seem like anything but any surgery makes you nervous. Thanks for your prayers and I will keep you update. I'm leaving you my very 1st school picture. You can see how happy I am at school. This picture means so much to my family. When you are unsure of the future and then later get to see this smiling face going to school you are reminded that you have witnessed a modern day miracle :)

Pre K update!!!

Wow!! Its hard to believe that we are almost 6 weeks into the school year. I'm doing really well in school. I stay in the regular prek room for most of the day. I'm pulled for 30 minutes when I first get to school and then 30 minutes before lunch in order to work on my IEP goals. I'm also pulled for OT, speech, PT, and APE. All of my therapist are amazed at how much I progressed over the summer. In fact, my PT asked my mom what kind of therapy we did this summer because I am doing so much better with my motor skills. Mom said we just swam all summer. I can't tell you how much swimming helps with balance and strengthening. It has been one of the best things for me. Other than my therapies and pull out times I do things such as centers, circle time, and nap. During centers my special education teacher actually comes into the regular prek room with me and helps me. When we do centers the 2nd time during the day, a para educator helps me go to each center. Circle time seems to be the biggest challenge for me. Believe it or not me the little boy who has the entire left side of my brain gone which contains the speech center is getting in trouble for talking way to much during circle time. I've actually never been taught that I have to be quiet sometimes. I've always been encouraged to talk since I didn't talk for so long. So now we are working on when it is appropriate to talk and when I have to listen. It may take a while but I'll get it. I'm also eating lunch with my peers and doing pretty well. I have my moments but I usually straighten up once I'm corrected. Mom says I'm doing better than she thought. She put me in the prek room all day to start with to see how I would do and I'm staying in there much longer than she thought I would be able to. I lay on my mat for nap time. I have a para in there that helps me go to sleep but I'm taking naps with all the other kids. I'm also doing well with the potty. So far I haven't had any accidents at school. So yes I do have some things I need to do better with but overall I'm doing GREAT and my family is proud of me. Since I'm doing so well overall my mom and dad have to remind their self just how far I've come in such a short time. I mean I just started fully walking 100% of time this time last year. So when you think about that it is just amazing at what I'm doing. Here is a picture of me and my brother on my first day of school. Oh and I almost forgot. I'm not walking with a brace anymore!!! Thank you God for what you have done and continue to do in my life. Love you all, Jadon

I turned 4 today!!!!

Today I turned 4 years old. I'm sharing a video of me singing happy birthday to myself because I think it shows just how AMAZING I'm doing. I had great day. We had a big waterslide and Mickey and Minnie came to my party. I sure was excited to see them. I had a great day with my family!! I played, smiled, opened my presents, and ate cake. I did pretty much everything a four year old would do on their birthday. We are so blessed and thankful for my progress. Enjoy the video

Through my eyes!!!

Through my eyes the world is a happy place. I smile when I hear the birds and laugh when the wind blows through my hair. Through my eyes I never meet a stranger and I see the best in every person. I see everyone equally no matter what you have or what you don't have. None of this matters through my eyes. Through my eyes I see forgiveness. I've had nurses stick me one minute and then I play and hug them the next. Through my eyes I want to be just like my peers. I will follow and try to do everything you do. So just be patient I'm learning more from you than you know. Through my eyes I have the best brother in the world. I want to be with him and do everything he does. I don't understand when I can't do some things he does but mom says I will when I get his age. Through my eyes I see the importance of smiling and making others smile. I have the best personality and will do anything to get your attention and make you smile. I don't understand why some people choose to ignore me but just maybe I planted a seed in their heart. Through my eyes I love Jesus and I love reading and talking about God before I go to bed. My mom tells me all the time that the world would be a better place if everyone could just see a piece of the world through my eyes. So that is my goal. I hope that everyone can see a piece of this world through my eyes.

Mark 10:15- I tell you truth, anyone who doesn't receive the Kingdom of God like a child will never enter it.

Well check, eye doctor, and 1 1/2 years seizures free!!!

I've been staying busy lately going to lots of Doctors appointments. I went to the allergist last week to get my paper work done to bring my epi pen to school. Well while I was there I had to be put on antibiotic because I had a sinus infection. I have to go back to the allergist this Friday for allergy testing. They are also going to retest to see if I'm still allergic to ants. We are hoping that I'm not and that I will no longer need my epi pen. Once my allergy testing is complete we will go back to my ENT and see if I have to get my adenoids out or not. My brother and I had our well check today. Of course I showed out for the doctor. She was very impressed with my speech. I'm just a chatter box right now. My pediatrician was also impressed at how well and fast I'm developing right now. She checked me out and then let me play with her doctor tools. I told her to open her mouth and I shined her light in her mouth. My pediatrician thought that was funny. I'm such a little ham and am always making people smile. I also saw my eye doctor today. He said my eyes look great. He still doesn't know exactly how much vision loss I have. He said right now it is looking like I'm seeing about half of what I should be. We knew this was a side effect before we did the surgery though. He said as I get older he will be able to tell us more. As of now I do not need glasses or vision therapy. He said we will do vision therapy when I get a little older. He checked to make sure I wasn't color blind and he laughed when he said I'm not because I passed the test with 0 problems. I am able to point to colors when you ask me to point to a particular color but I will not say it when you ask what color something is. I'll get it before long. Mommy said now that she knows I'm not color blind she is going to push me extra hard to learn them. Other than doctors appointments I have just been enjoying my summer. I did get all my school uniforms and supplies. I'm getting excited about school and getting to go with my mommy and Jacob to LES. Thanks for all your prayers. I've made it a year and a half with 0 seizures!!!!!!

Neuro appointment!!

I had an excellent appointment today. My neurologist said I'm doing great. She said I'm progressing along wonderfully. She spent about 30 minutes with us talking, asking me questions, and observing. I talked to her the entire time and she noticed how much my speech has improved. She said that she would see us in December just to monitor my progress. I can't explain to you how much joy it brings to us to go to the neurologist and get nothing but good news. Not to mention we love our neurologist at Children's, she has gone above and beyond for us. After my appointment I got to go spend time with my cousins. My Aunt lives in the New Orleans area and she has a little boy and twin girls. I enjoyed getting to swim and play with them. We also stopped at Pizza Man in Covington on my way home. We love that place. If you've never been you should go. You can watch them cook the pizza through the window. I'm leaving you a few pictures of us today. As always, thank you so much for your prayers. Your prayers have helped my family greatly.

It's tough growing up!!

I'm still enjoying every minute of summer. I've had a couple of appoinments this past week. I went to the brace shop and I no longer have to wear my sure steps. I only have to wear my brace. The sure steps were helping me get my heel down and I'm now able to do it without them. I have to go back in two months to see how I'm doing. I also went to the dentist. He said everything looked great and my brother and I didn't have any cavities. So great news at those appointments. I have gone 4 days and 3 nights without my nunu(pacifier). If you know me, you know that this is a major accomplishment. I was so attached to my nunu. It has been my security through every needle stick, hospital stay, surgery, therapy, doctors visit, etc. It has helped me get through it all so for me to go this long without it is pretty good. I'm not gonna lie its been hard because I have a solution for everything my mom tells me. For example, the dog took my nunu so my mommy told me the dog took it and it was gone. Well I knew I had more than one so I told her I had two of them. She then said she lost the other ones and I said I find one in my playroom. (We always find them there when we lose them.). When we couldn't find one in the playroom, I just told my mom to go buy me a new one at store. All of this while tears are coming from my face. So yes its been hard and mom has cried with me but we are getting there. I'm only asking for it every now and then with no tears. I'm just growing up this summer. I don't have a nunu anymore and I'm potty trained. I'm going to be ready for prek for sure now. Our next thing to work on is finding a way to get me feeling secure on the big potty. My right sided weakness makes it hard for me to use the big potty. We are looking at different seats and stools to use to help with this. We will figure it out. For now we are satisfied with me being able to use my little potty and that I'm telling someone when I need to go. I've also been working on using my right hand. I'm working very hard and I'm able to use it as an assistant hand in order to help me string large beads. I'm also working very hard on naming the letters of the alphabet and their sounds. I can name 8 letters and I know 17 sounds. Oh and I'm able to jump now. I can't jump very high, but I can get off the ground and I love to show people that I can jump. I have a neurologist appointment at Children's Hospital in New Orleans on Tuesday. Please pray that I will have a good appointment. I can't wait to show my neurologist all my new tricks. I'll update you after the appointment. Love you, Jadon

Potty Training 101

My mom has been potty training me for a week now. I am proud to say that in that week I only had 4 accidents. 2 were #1 and 2 were number #2. For the last 3 days I have been going number 1 and number 2 on the potty with 0 accidents. This includes nights as well. I haven't had any accidents at night all week. I even get out of the pool when I have to go. My mom isn't ready to say I'm fully potty trained just yet, but wow I'm pretty close. My family can't believe how well I'm doing with this. It's been much easier than they thought for sure. Me I don't really see the big deal, when I have to go I just tell them. You have to remember this time last year I wasn't walking 100 percent of the time and one year later I'm not only walking and running but now I'm almost potty trained. Wow isn't that unbelievable!!! Thank you God for what you have done and continue to do in my life!!!!

More good news!!!!

It's officially summer and I am loving every minute of it. I get to spend everyday with my mommy and brother Jacob. We go swimming almost everyday. I love it and its great exercise for me. We are really focusing on getting my right hand to work better this summer. I'm trying really hard but its just not cooperating. The good news is I have a great attitude about it and I always try. I will get it eventually. My mom is also working on potty training me this summer. We are on day 3 and I haven't had an accident in two days. I was able to go to wal mart, master chef, and to Jacob's t-ball game in my big boy undies. I'm really excited about being able to wear my undies and my family is very proud of me. We are hoping by the end of the summer I will be able to go to school fully potty trained. Speaking of school we received a letter in the mail today saying that I was selected to participate in the PreK program at Loranger Elementary. We are very excited about this. I will be in a regular education prek class. Right now I'm learning so much from my peers so we know this is going to be a great thing for me. As always thanks for praying for me. I'm doing fantastic!!! Love, Jadon

Great News!!

My mommy talked to my neurologist in Detroit today. They decided that I do not have to go back to Detroit this summer. I'm doing so well that he said we can wait another year before we go back. The main reason we were going back was to let him evaluate my hand. I'm still not using it as much as we would like but I can use it and will use it when I want to. So we will wait another year and see how I'm doing then. We just aren't ready for surgery yet and feel like we should just wait. In the meantime my neurologist said to let him know if we have any problems in the next year. Thank you all for your prayers. We are very excited that I'm doing so well and can skip this trip.