Thursday, September 25, 2008
The Health Visitor came today to go through Finley's red book and to weigh him. Finley is now a huge 10lb 6oz the little pudding.
I asked whether Noah could be weighed as I had not managed to take him to the clinic for a while and after the last weigh in I was worried that he wasn't putting enough weight on. He has put weight on and is heading towards the 50th centile (of the down syndrome chart) again. Which I am really pleased about. Pre-school tell me today that he has even eaten some pieces of thin apple which I am amazed about as he will never eat fruit for me. I even gave him some this evening and he wouldn't eat it for me, he is obviously watching the other children and is copying them - which is great.
He went out into the garden this afternoon and can now travel forward in his toy car and on his fire engine instead of travelling backwards.
On Tuesday Noah had his appointment at 10.30 at the Children's Hospital for his Hearing Aid, it was a nightmare trip. I managed to park outside the hospital , on the road. I do have a double buggy but there was no way I would have been able to lift that out of the car at the moment as it weighs a ton, so I decided that I would take Finley in the pushchair and put the reigns on Noah. We got into the hospital alright but waited 45 minutes to be seen, trying to keep Noah entertained for that period of time sitting on my lap was extremely challenging. When Noah's name was finally called Finley woke up and started crying as he was hungry and wanted his milk. Finley cried throughout the whole of Noah's hearing aid fitting. At the end of the fitting I asked whether there was a room free to feed Finley, I knew that trying to keep Noah still whilst feeding Finley would prove difficult and in a small room where he could not escape he was much safer. Whilst I was feeding Finley Noah would not stay still and made a be-line for the door, he banged his head on the sink next to the door, so as one child stopped crying the other started. By the time I came out of the hospital I was red faced and very stressedeeekkkk I said I would never take them anywhere again. :-)
However it was all worth it to see Noah's face once I put the hearing aid on him at the dinner table. He could hear the television in the living room and was dancing in his chair. I could tell there was a change straight away, he was unsure of the different noises but he could hear them. I was really shocked as he kept the hearing aid on for over an hour before he started messing with it and taking it off. He had it on when Pete called his name from upstairs and he immediately looked towards the stairs.Im really hoping that now with the help of the Hearing aid it will help his speech develop. (thats if he continues to keep it on) We have a follow-up appointment in about 6 - 8 weeks to see how he is getting on.
We have continued to attempt putting the hearing aid on Noah, some times he doesn't mind having it on and some times he wips it off straight away. Pre-school have also been persevering with it and putting it on him at certain times. On Wednesday they put it on and apparently he decided he didn't need it so did no more than put it in the bin. The little monkey.
Wednesday, September 24, 2008
Monday, September 22, 2008
Last Wednesday we stayed with him at pre-school to see how he settled in, but on Thursday we just left him there, apparently he did really well, he played passing the ball to some other children, he played with the cars and enjoyed listening to the story. He couldn't wait to get out of the door that morning to go to pre-school, he kept on signing school.
We have an appointment for him tomorrow to get his hearing aid fitted which should be interested as Noah hates having anything on his head, I'll let you know how he gets on.
Noah has settled really well with being a big brother, his little eyes light up when he sees Finley and he comes over and gives him a kiss and a hug. When he comes into the room he immediately goes over to his pram to see whether he is there. He looks around if he isn't in the pram until he finds him. If Finley has been in his bouncer and I have taken him out Noah decides its his turn and gets into the bouncer I will have to get a photo of him doing this its really funny but he will probably break it if he keeps doing it so i'm trying not to encourage him.
Just a quick update on Finley he is doing really well and has taken to breast feeding in fact in a week and 1/2 he has gone from 8lbs 11oz when he was born to 10lbs last Friday, he definitely likes his food, he's such a pudding.
Posted by Siobhan Marie Tully at Monday, September 22, 2008
Monday, September 15, 2008
I have recently been nominated as a Local Hero through the Birmingham Mail, sponsored by the Pallisades. Visit the following to see the article. This is due to this blog and the efforts I have made to try and make people see that having children with special needs may not be as bad as they think. Having children is always challenging having children with special needs can be extremely testing but at the same time very rewarding and the rewards most definitely outweigh the challenges. I hope that the blog has been and will continue to be of some help to people. When I get more time I want to start to cover issues that may be helpful to people, things that we have been through with Noah, feeding issues, sleep patterns, behaviour issues, DLA etc. I just want to thank all of you who read this blog.
Thursday, September 11, 2008
Finley Matthew Edwards
Finley Matthew Edwards arrived into the world on 9th September 2008 at 1.49am weighing a healthy weight of 8lb 11oz . We had to stay in hospital overnight but came out yesterday. He is doing well and his big brother Noah loves him to bits. I will update more when I get a chance.
Noah and Finley
Finley Matthew Edwards
Friday, September 5, 2008
I dont think that I have mentioned before that Noah appeared in the Valuing Diversity Booklet for the European Year of Equal Opportunities for All.
The Booklet can be downloaded from the site above if you go down to the UK Closing Event below there is a link to Download the Valuing Diversity Booklet, Noah's picture is on page 42.
Posted by Siobhan Marie Tully at Friday, September 05, 2008
Thursday, September 4, 2008
Well I haven't managed to post anything lately, still no sign of little bee coming along my due date is a week away now but I think this little baby is quite comfortable where he/she is and has other ideas about when they will turn up.
Updates on Noah, we have had a busy summer with Noah, he has had a number of appointments. I have noticed over the summer his features have changed he has become more grown up looking.
Firstly I promised that I would post pictures of the walk for the Solihull Down Syndrome Group. Thank you all for your support in sponsoring us, we are yet to confirm how much the group raised overall but it will most definitely benefit the whole group. THANK YOU.
Noah finished nursery on 15th July and has been at home with me since then, waiting to start his new pre-school on 17th September.
We recently attended a Ear Nose and Throat appointment, where once again Noah failed his hearing test. It has therefore been decided that Noah will be fitted with a Bone-conduction hearing aid this will help him with his hearing. I don't think his hearing is very bad but it will benefit Noah hopefully when I am working with him. Bone-conduction hearing aids use a vibrating pad that allows sound to be conducted through the bone rather than through the middle ear. They are worn on a headband with the vibrator behind the ear, resting on the mastoid bone (part of the skull behind the ear). So basically Noah will get a little head band to wear, obviously it is best for him to have it on all of the time but for anyone who knows Noah this will probably prove difficult as he hates having anything on his head. I think its just a case of perseverance, with getting him to keep it on.
The other option is for Noah to have grommets. This is performed under a general anaesthetic, the eardrum is punctured with a very fine instrument and the fluid sucked out. A grommet (a tiny plastic tube sometimes called a ventilation tube) may be inserted into the hole to keep it open for a while. This will help air to circulate to prevent further fluid from building up. It stays in the eardrum for about six to eight months (on average) and then the eardrum naturally pushes it out and the hole heals by itself. There are problems with this, as the grommets can fall out on its own after a week, a month or so and therefore without having constant ENT checks at the clinic we wouldn't know whether they were still in. Therefore we are reluctant for Noah to have grommets first without going down the hearing aid route. Once he gets his hearing aid I will update with some photos.
I will leave you with some photos of him over the summer.
Noah loves pretend talking on the phone, he babbles away until there is someone on the line and then he is so quiet.
We went to see Mary Poppins which was arranged through the Solihull Down Syndrome Group, this was taken before the show when we were waiting on our food in a Chinese restaurant.
Posted by Siobhan Marie Tully at Thursday, September 04, 2008