March 2011

Well summer is over and it's been a good few weeks since Noah started back at daycare and physio. Things are going very well and Noah is doing just great. He is loving daycare even more this year and even sleeps on the mats like the other kids. He appears to sleep a little longer each time at daycare, Wednesday he slept for 1 1/2 hours.

Physio is going extremely well too, his therapist has some great ideas. Noah's sessions usually begin with a deep pressure massage from his occupational therapist and then time in the ball pit. Being surrounded by the balls makes him more aware of his body, this calms him and prepares him for the rest of the session. Noah loves the swinging motion so his session consist of a platform swing which he is positioned on his front, a hammock swing which gives him a nice tight hug whilst swinging, and a bolster swing which he straddles and can put his feet on the floor.

We are also concentrating on desensitizing his feet, his right more so than the left. Noah is bearing weight on his left leg more, which we think is because his left foot is used to feeling different surfaces. Each day I rub different textures on his feet, items such as, hairbrush, roll different textured balls, make-up brush, anything that will give him that awareness of his feet.

Noah is still enjoying to stand up in the pool, we have some good ideas to help with the standing in water from a few friends which we will be trying soon. The pictures above are Noah and his therapist on the bolster swing and Noah in his bounce bounce baby with bubble wrap underneath, this encourages him to put his feet down.

Bathtime Laughter

The last week in the world of Noah has been really good. Our little man went back to daycare last week, which was good for him and for us. It's been hard trying to keep a little angel occupied especially when you see how much energy he has and how he wants to get around but can't.

So Noah is in an older room this year, 2-3 year old. The kids in this room don't sleep in cots, they use little mattresses. I just thought that's not gonna happen, he'll be all over whoever is near him and try and lick them, and those legs are dangerous when he's laying down, I got kicked in the stomach this morning trying to get his shorts on. Anyway he slept on the mattress for half an hour, he settled eventually stroking the back daycare workers hand. He also drank out of a sippy cup, something I've not braved too much, I think he got completely soaked but he got to try. It's great that he gets the chance to try everything all the other kids try. My little boy is growing up.

Friday was Neurology day. It's been 6 months since the last visit,and all is good. I don't like tempting fate, but Noah has been seizure free for 6 months. As Noah hasn't shown any signs of seizures we are not having an EEG or increasing his anti-epileptic drugs. He is on the maximum for his age, weight, etc so if he does have seizures again we will have to introduce another drug.

Thank goodness for water and paddling pools. The last couple of days have been hot! Noah has enjoyed lots of splashing in his pool, he just loves it he can't get enough of that water. Last week we took Noah to the hydro pool at the local aquatics centre, and big things happened, exciting things. I think I mentioned in my last post about getting Noah to stand in the pool. Well we did it, he did it! Not for long but with the help of me, dad and nan, Noah stood up leaning on the side of the pool. The night before we took Noah to the pool I wrote a poem about Noah, here goes.

I can't wait till Noah can walk.

It will be a great day when he can stand up.

We will have a party.

I will cry, he will laugh.

Then we'll run towards one another and have a big hug!

New Year New Goals

Well after a fantastic Christmas and new year, we are looking forward to seeing what new things Noah will learn this year. Noah really enjoyed his Christmas, he was so much more aware of all the fuss, gifts, people and food. I was really excited to see how interested he was in all that was going on around him. As to Noah's health, we did find out just before Christmas that he has Asthma. We started out using an inhaler with mask and spacer, that was fun for a while until the novelty wore off, so now we are trying him on Singulair tablets, so far so good. Noah can also tell us when he doesn't want a certain food, he will take it from you and drop it on the floor. He will also cover his eyes with his arm or rub his eyes when he doesn't want to do something. We are looking forward to Physio starting back up in a few weeks,as we need some new ideas on getting Noah to stand. He still loves the standing frame, but he hasn't really shown any signs of clear weight bearing without the frame. As with most Angels he loves water, so maybe standing in a shallow pool would encourage him more. I was hoping he would've been standing by the end of last year, but that wasn't to be so now we'll just focus on maybe his first birthday. We are off to the Europe in July and it would be fabulous if he could stand for our family in Europe.

Life with an Angel brings along periods of excessive appointments, the past 2 weeks has been one of those times. One of our appointments was to the ophthalmologist, who we see once a year, luckily for us the Dr we see has other Angel patients so he knows how things will go with Noah. After a major struggle to keep Noah still his eyes are all good. The other big appointment we had was with the paediatrician, we haven't seen her for about 3 months so I was pretty excited for her to see how good Noah was going on his anti-epileptic drugs and how great his sitting is. Noah was ready to impress sitting up all by himself in the waiting room and drinking without lying down, she was really surprised when she turned the corner and saw him. Noah's stats at the moment are all good, 13.6kg, 95cm long and 46cm head! So now that the year is coming to an end all the appointments are nearly finished, just a physio and speech session until after Christmas. Recently we fixed a seat on the back of Damien's bike for Noah so we can go for rides together and also so Noah can see the world from another angle besides the pram. We've had 2 bike rides and he loves the seat, he just looks so chilled out checking everything out that we pass. This is one of the ways that we thought we could best adapt something that we thought we wouldn't be able to do with Noah, so he never gets left out. I always want to include Noah in everything do no matter what it is, we will find a way so he can enjoy every aspect of whats on offer in life. Noah's daycare are great at include Noah, this week they sent him home with some art that him and his little friends had been doing that day, I cried when I saw them.

A year gone by

It's been 13 months since we got the diagnosis of Angelman Syndrome in black and white. What a year it's been, it still seems like just yesterday the doctor called and asked us to come see her. It takes a while but the roller coaster of emotions we went through did pass and we were able to concentrate on the here and now rather than worry about what if or what happens when. My world is completely different to how I had planned it before the diagnosis, but I have adapted and continue to adapt things everyday. The past year has been filled with many hospital appointments, hospital stays, seizures and therapy but this is life for us now and it's feeling OK. Noah is growing into a great little boy and his personality is shining through more each day. We treat Noah like an individual not as a diagnosis. He does have some of the typical Angelman characteristics but not all. The fascination with water seems to be more apparent just lately, hydro therapy is a hard one because he's not interested in doing what the physio wants he wants to splash and kick the water as much as possible. He has his own little way of soothing himself and that is wheels, he likes to go to sleep with a toy car and rolls the wheels back and forth till he's asleep, he looks so cute when I go check him and he's fast asleep cuddling his little car. Eye rubbing is a new thing too, we thought the was always sleepy but this therapist says it's way of organising his thoughts and getting ready for the task we want him to do or when he's eating he might want a break or a drink before continuing on with his food. I recently did a Keyword signing workshop and I am using a few basic signs with Noah such as food, drink, more, finish, wash, car. I also show objects, such as bottle, spoon, towel (for bath time) to get Noah to better understand what is going to happen next. So the past year has been a big learning curve for the whole family, but it's going pretty good. We've all learnt so much in the past year from Noah, imagine what we will learn in the next year.

My Angelman Noah: Super Noah

My Angelman Noah: Super Noah: "It's been a while since I've updated the old blog, but a lot has happened in the past month. Noah's med's seem to be working wonders he is ..."