A little update

It's been A while since I've been able to get on my blog, mommy wouldn't share the computer and I'm just getting used to my iPad. I've been doing really well and making a lot of progress. I am sitting unassisted, I can pull to stand and am cruising next to furniture. I got a gait trainer and I'm learning how to walk in it and am working on sitting to stand. I am still going to Children's Hospital for speech, physical and occupational therapy, I have the same therapies at home plus vision therapy, and also doing therapeutic horse riding and private gymnastics. I am very busy but really love swimming so I'm hoping mommy can find time to get me some swimming lessons. I will try to keep in touch sooner but I am going to get ready for bed. I will try to get someone to upload new pictures and some videos. Peace


I have a Facebook page that is easier to follow me on www.facebook.com/HopeforJayden

Update on my progress

Hey everyone! It's been a while since I've updated my blog. I've been a very busy little boy. I have been doing great in therapy and I started commando crawling a couple of months ago. I am still trying to figure out getting on all fours but I know I will. I am working on pulling myself up to stand and I am a pro at standing next to my table. I have so much fun standing and playing with my toys. I have been taking a lot of steps if you support my waist and I will soon be all over the place when my gait trainer comes in.

I have had several doctor appointments in the last few months and I have gotten some great news. I had tubes put in my ears, adenoids removed and an ABR hearing test. I passed my hearing test. I also saw the cardiologist and the hole in my heart is closed!! We have been blessed with some great news and I know mommy and daddy are so relieved and happy! I have not been having a lot of big seizures but enough smaller ones that I will be going to the neurologist soon. I will let you know how that goes.

I will be going to UNC at Chapel Hill October 5 to see doctors at the Angelman Clinic. I am excited to go to North Carolina, maybe mommy will take me somewhere fun while we are there. I hope she isn't boring and makes the trip all about doctor appointments.

Thanks for keeping up with my progress and I will update a lot sooner next time. It's hard being 20 months old and keeping up with such a busy life :)

 Hey guys! I know it's been a while since I've posted but I have been very busy with therapy. I am making a lot of progress thanks to my amazing group of therapist. I have 6 therapist and they all push me every session to reach my full potential. My favorite is when I get to paint or play with the bubbles. I LOVE bubbles and water. I found my toes and they are pretty awesome, until I bite them. I started biting and mommy and daddy don't think it's funny, I do... when it's someone else being bit lol.

 Yesterday I was on the news. Mommy and daddy brought me to talk about Early Steps and how the state wants to cut the program. That would mean I would lose 3 of my therapist and 3 hours of therapy a week. I cannot afford to lose my therapy. I am already so far behind and need all the help I can to meet all of my developmental milestones. I have made so much progress just in the 6 short months I have received therapy. I am pretty much sitting on my own and I am learning how to commando crawl. I am able to stand next to furniture and will take a few steps if you hold me up. I have made all this progress and overcome a lot due to my extensive therapy. My mommy wants me to get as much help as I can to reach my full potential. She is pretty much a drill sergeant. I know it is because she loves me and she has so much faith in me.

 The National Angelman Walk is this Saturday in Breaux Bridge, LA. I am so excited to be going and meeting all of my angel friends. I have met 2 angel friends and they were so cool so I am sure the rest of them will be cool too. I will post after the walk and let you know how it went. Thanks!

I have been staying pretty busy with all of my therapy but I wanted to catch everyone up. I am still in therapy every day during the week and I started therapeutic horseback riding a few times a month. I am enjoying it. All the ladies are very nice and the horses are very cool. I am so high off the ground when I'm riding. The horses are so big! The ladies  were so impressed with how I sit up when on a horse. What can I say, I'm a natural. There isn't much you show me how to do that I don't catch on to. I would do things a lot faster if I didn't have AS but that doesn't really matter. I have accepted the fact I am not like other children my age. I work harder and longer to do things and I think that makes me better. I know the ladies like watching me work out in therapy and I am able to get other women to do things for me besides mommy. My life is pretty cool for being 15 months old. I don't know anyone else my age that has 7 ladies helping them weekly in therapy. I also don't know anyone my age who can ride a horse. I really have come to enjoy my therapy. Some days I have an off day but most of the time I enjoy working hard. I know in the long run it will pay off.

Mommy got me an appointment with the neurologist, finally. He prescribed me seizure medicine and it has been helping. I still have some very small seizures but not as many as I was before the medicine.

I said dada for the first time a couple of weeks ago and then I said mama. I am not sure what the big deal was but Daddy was so excited I got a s'mores cupcake. It was so good!

On a different note, my nanny got engaged and I am going the be the ring bearer! I am not sure when the wedding is but I will be wearing a tux. How cool?? I am taking applications for dates. I am not very picky but I do have standards and I prefer brunettes. Also, I am in to the older girls. The girls my age are whiny and clingy and I don't have patience for that. Nanny hasn't said if I can bring a date or not but since it's pretty much my show and no one ever tells me no I'm sure it will be okay. Remember, it's easier to ask forgiveness than permission.

Thanks for reading my post and I will try not to wait so long next time!

Hey, sorry I haven't posted lately but mom has been using the puter to do whatever it is that mom's do. Anyways I wanted to share my week. I had an eventful weekend and the rents brought me to Children's Hospital Sunday night. I was shaking my head and my eyes  rolled in the back of my head several times throughout the weekend. Mom thought I was having seizures but the doctors say they weren't long enough to be considered seizures. I knew mom and dad weren't going to settle for that so I am waiting for mom to hear back from the neurologist to have an EEG done. I will keep you posted and let you know what they find. I know my rents just worry because they love me so much. Mom probably wishes I would come with instructions but where would the fun be? Angelman Syndrome sucks because most people have never even heard of it. I don't even think any of my doctors have patients with AS. It doesn't matter to me though because I know my rents are doing all they can to raise awareness and educate everyone.
Monday (OT & PT @ Children's) - I was running late for therapy since we didn't get home until midnight from the hospital. Mrs. Sarah could only see me for 20 minutes but she told mommy I did really good and she loves working with me. It's only my 2nd time in OT with Mrs. Sarah. I had a 30 minute break and went straight to PT. I did okay but was pretty tired from the long night and having OT right before
Tuesday (Speech @ Home)- Mrs. Jess showed mom new ways to work  my muscles around my mouth, we worked on sounds and signing "more".
Wednesday (PT @ Children's)- MY BEST DAY OF THE WEEK! I sat for Mrs. Laura for 1 minute and 5 seconds! Mom was SO happy she stopped and bought me my 1st pair of shoes! Most people will think this isn't a big deal but it is HUGE for me.
Thursday (PT @ Home)- Mrs. Lauren said I am doing really good at correcting myself when I am sitting and about to fall. I use to just thrust back and fall but now I am getting the hang of pulling myself back up. I didn't sit for long periods of time but I wasn't feeling well. I have 3 teeth coming out and it hurts so bad. I slept for a long time after therapy and am feeling much better today.

Today is Friday and I have OT @ home with Mrs. Lauren. I am so glad it is my last day of therapy and I get a 2 day break.

Thanks for reading and I will be posting some more of my progress soon. I will see if mom will video me sitting so I can post it on here for you to check out.

Rare Disease Day

Hi, this is Amanda. Today is Rare Disease Day and I would like to share how it personally affects our lives. Jayden was diagnosed 2 weeks after his 1st birthday. We were told he either had Angelman Syndrome or Prader-Willi the day before his 1st birthday. He was hospitalized at a month old for failure to thrive, he didn't get back up to his birth weight. He had difficulties latching on to nurse and we had to hold his chin up when he was drinking a bottle to help him drink. We noticed around 6 months he was a little behind but I thought it was due to prolapsed cord at birth, failure to thrive and he also had a hole in his heart. By 9 months he wasn't sitting so our pediatrician set up therapy. They didn't start therapy until 11 months because the paperwork and evaluations were a long process. I finally said something needed to be done so she sent us to a neurologist and an opthamologist. The opthamologist said he couldn't see at all. He was so farsighted he was also nearsighted. I spoke with his therapist and decided to switch pediatricians. At our first appointment he said Jayden had a genetic syndrome. This is the first time I was told something was actually wrong and he wasn't just behind. We met with the geneticist and he ran test. Our new pediatrician is amazing and if we wouldn't have switched Jayden probably still wouldn't be diagnosed. Sorry this was so long but this past year has been very long! Now Jayden is in PT 3x a week, OT 2x a week, and speech 1x a week. He wasn't doing anything at 11 months old and now he is rolling all over the place, reaching and playing with toys, very close to sitting and he can stand next to furniture when you stand him there. He has come a long way but still has so much to catch up on and work to do. Please check out other blogs about rare diseases today.

Thanks so much to everyone who went to Chili's and supported me and my family. I had a great night meeting new friends and it was awesome mommy and daddy let me stay out late. I had a good time in therapy this week. I started OT Monday at Children's. My new therapist seems nice. I am a very lucky boy to have the nicest and prettiest therapist. I have 6 therapist and they are all happy with my progress. I have very strong legs but I need to work hard on my upper body. As soon as I get stronger I will be able to crawl and get into everything. Mommy's friend gave me an ipad! I am so thankful and truly blessed to have so many amazing people supporting me. I am so excited to start playing on it. I have so many cool new apps to explore. I am going to bed now so I can rest for play tomorrow but will post again soon. Peace.