Its cold today

Its cold today and of course Mammy wants to go outside. It won't be too bad as we have the van back maybe she will take us for a spin to some of the shops. I know she wants to go to the gardens but I think its a bit too chilly for that. Let you know later what we did today

Santa came , Santa came

Santa came and I got an Uggly doll well its like a teddy bear and a Sock Monkey I really like him he is green and stripy. I also got a nice puppy blanket its just like my sheep blanket its nice and soft and fluffy.
Santa came to Eoghan and Maurs too. E got some kind of games for his box in the living room. You know he talks to his friends and they play the game together. Maurs got a basketball she better not bounce it in the house or Mammy will go ape. She also got a fake puppy. We all got clothes too.
Dinner was over in Nanny's house we always have Christmas dinner there.
Mammy's van is in the shop and it should be fixed later today. If its not raining we might go to the beach. There are nice basketball courts there and also a swing I can use. Of course Mammy will have to have a walk on the beach so I guess we will take the jogging buggy. I am getting too big for it now. Once I get my new wheelchair we will be using the buggy I have now for trips like that.
We are supposed to be going to the Botanical Gardens to see the Train Show this week too. E and Maurs are off from school so its a bit noisy in the house during the day time but we are having fun.
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Some early Christmas pics

Putting the decorations on the tree

Santa hat on

Miss Maurs

Maurs again

Finny

Cheeky boy

Trying to get a good shot of all 3

Its the one I like the best














Hang on a minute I want to get comfy

Now I am nice and relaxed

Finally an update

Well Mammy has been back in business with the computer for nearly 3 weeks and its only now she is updating the blogs. I don't know but I might have to get Nanny on board to help post my updates in a more timely fashion.

THe latest is my seizures have been a bit on the funny side up having some that I haven't had in a while and the ones that have been the norm for me are still there but not as bad. Had some seizures last Saturday morning and in the afternoon I spiked a high temperature. Mammy gave me some panadol and it took my temperature down. You know I was feeling great and Mammy was muttering ---------- autonomic dysfunction.

Other news I went to the wheelchair clinic and got to try out a really cool gait trainer ( fancy walker) so now Mammy is hoping that I will get one. As she says I can kick really good so there is no reason I cannot move around if I have the right equipment. We also are checking in to getting me some big boy wheels. Yup my first real wheelchair and then may be we can ditch the buggy wheelchair. Well after all I will be 7 soon and I do have an image to up hold. Well I cannot be dressing really cool and not have the right wheels to show off in now can I?

Santy Clause will be coming soon and Mammy was taking pictures of us the other night for the Christmas cards so she picked them up today and is supposed to be getting them out in the mail tomorrow. Must get her to post some new pictures on here

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Today is not an easy day for my buddy Ryan Holman's Mammy and Daddy. One year ago today God called Ryan home. Hugs to Mammy and Daddy Holman today

Mammys computer is nearly all fixed. Dee and Rick are putting it back together so she will be updating here soon.

My Pumpkin Story

Getting ready to carve the pumpkin
Not too sure about this thing
It feels a bit weird
Hand going in to the pumpkin
Hey this isn't too bad
This is fun
Got to take all the guts out
Squishy fun
Got a hand full
Have to have a little taste
I'm not sure about this
Lets try again
Daddy to the rescue to get it out of my mouth
Don't like it so I spit the seeds out
Going back to get more guts
digging , digging
just another little taste
great juice to keep my face soft
going back for more
another little taste its getting better
Maura helping me
This is fun and it tastes good

Infantile Spasms Awareness week

Here are the faces of Infantile Spasms

Make a video - it's fun, easy and free!
www.onetruemedia.com

pop down to the bottom of my page and turn down the volume on my playlist

1 fell out and they cannot find it hahahahahha

Remember the other day I told you about my wobbly teeth? Well 1 fell out and not the one they were watching. Yup the one on the bottom fell out or in or somewhere but they cannot find it.
I was such a little devil on Sunday, I managed to get my feeding tube off my button and fed the bed instead of myself and then the tooth disappeared. I just had blood all over my face and Daddy nearly had a heart attack at first as he didn't know where the blood was coming from. Ta da my bottom tooth is missing.

Now Mammy is talking about checking my nappy to see if she can find my tooth. All I can say " Good luck Mammy in finding my tooth ".

The 2 on the top are really wobbly watch I will probably swallow them too and Mammy will be on a search and rescue mission again hahahahhah.

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Wibbley wobbley teeth

I have 3 lose teeth. 2 on the top and one on the bottom. I guess the tooth fairy will be coming to visit me soon.

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Noah got his wings

My Buddy from down under Noah King got his Angle wings on Saturday October 8th. He was 10 years old.

RIP Noah.

Prayers for my friends

Some of my Warrior Friends aren't doing too good right now and are in hospital so could you all say a small prayer for them.

Heather in North Carolina, USA

Liam in Georgia, USA

and Noah in Tasmania, Australia

Celtic Thunder

Well I went to my first concert in the Beacon Theater. WOW is all I can say. I felt like a bit of a celebrity a lot of ladies came over to talk to me and Mammy. They all thought I looked cute as I was dressed like the lads from Celtic Thunder. What can I say I do have good taste.

When they all started clapping you know the scared the puttins out of me. So for the first few songs Mammy would let me know before they would start clapping so they wouldn't scare me. That was going great until Ryan Kelly came out singing all the ladies went mad screaming. I'll tell you they put the heart cross ways in me. But I didn't cry.

At the break Mammy took me out of my wheels and let me snuggle with her and she let me sit on her lap for the rest of the show. It was going great I was handling listening to the clapping and then the last song is Irelands Call. Well it sounded like a herd of elephants all the ladies ran up to the stage. You want to know why? The lads wear Kilts and in part of the song they spin around and you get to see more than their knees if you know what I mean.

The staff at the Beacon were brilliant and I felt like a VIP. They gave me an escort in and out of the building and got people to move out of my way. On the way in they showed us where the bathroom was but that didn't matter as I had my nappy on. They wanted to know if I wanted to get anything at the gift shop as they would make it possible for me to get there. We didn't have to make that pit stop as Nanny had already picked up the book and a teddy for me.

I had a great day out with Nanny and Mammy and I got to hear a great show with brilliant music. Hopefully they will be back next year and I will get to go and hear them again.

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Well the latest

Well ortho appointment went good don't have to go back for 6 mths. I go back on Tuesday to see Walter to make my new long legs so I can stand with the right support.

Neuro appointment was ok we got to see Karen and she upped my VNS and we go back in 2 weeks and she will up it again. They want to get my VNS up to a better zap before they start messing with my meds.

My seizures have calmed down a bit again but then again the weather isn't as crazy as it was and the temperature's have kinda stopped going up and down like a yo-yo.

Can you believe Mammy has gotten another appointment for me next week? She is bringing me to get my flu shot. So i think we have had a record this month with doctor's appointments I will have visited 9 doctors this month and next month I already have 3 scheduled. So my Mammy is very busy between my doctor's appointments, my therapies, getting my school set up, making sure I have all my medications, touching base with the insurance company so everthing gets covered and now she is working on get me a walker so I can get mobile.

Hopefully the tooth fairy will be visiting me soon, yup I have 3 loose teeth. The top 2 are very wiggly and one on the bottom has just started to wiggle. She hopes I don't swallow them when they fall out other wise she will have to do a search and rescue for them in my nappy hehehehe

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Old man

Mammy said I am like an old man as they have put me on Flomax for my peeing issues. Yup because of my peeing issues they have decided that I could use a bit of help with some meds to help me pee. I go every year to get the water works department checked out and its something that they said I would probably need if the peeing problem continued. Well I would prefer to get some meds pumped in to me over Mammy or Bonnie shoving a tube in my you know what to make the pee come out. What choice would you make? Meds right?

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I have been having a lot of seizures lately so does this mean that my VNS is working and now my meds need to be reduced well we will see what the doc has to say later today. I scared Mammy and Bonnie the other day I had a big seizure in the van and they had to pull over on the highway and swipe my VNS and give me oxygen. Every year September, October and November are not great months for me and my seizures. Well since I have been born I have always been in the hospital in October and I might be in again getting my brain waves checked out. Well at least the doc said the last day I saw her that she would like to bring me in after my VNS was on to see what it was doing so I will find out today when I am going on my holidays again.

I also have an ortho check up on my hips and spine. We are also getting pictures of my hand done as I cannot straighten out my thumb on my left hand anymore. So we will just have to wait and see what they see.

I will probably see John or Walter as I need to get new long legs made and Mammy has to get an appointment for Eoghan to get his lifts for his shoes checked out. Will let you know what happens later today.

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Pictures from Irene

Empty streets at noon in the Bronx

Subway closed