NEWS
Each month the News page will be updated so you can follow Connaires progress, if you have something you would like to share just let me know and I'll publish it here!
Mar. 2008: Connaire has had the best month so far since he was born! Even though he has had two chest infections over the past eight weeks we haven't needed antibiotics as of yet, I'm so relieved.
We are yet to receive the exact date as to when we will be visiting Great Ormand Street Hospital again but I have to say, "no news is good news". Connaires skull is quite misshapen but it continues to grow and as long as he is healthy I am happy.
Connaires orthopaedic doctor is more than happy with his progress so his mobility concerns will be monitored without the need for surgery at the moment.
In June Connaire will be going into hospital for a gastrostomy and fundiplication because, unfortunately, his feeding difficulties are long term. It will be very hard work to care for him for at least 2 months post op. but the doctors have reassured us it is the best option for Connaires needs and I have to say, I completely agree. He really doesn't like his NG tube and has to be held firmly when it's placed, this is something no mother should ever have to do, I hate it! Still, it has to be done.
Connaire is continuing to develope normally with regards to his intelligence to the great relief of us all, he is such a funny and intriguing little baby. We've had alot of comments regarding his stature though, you can already tell that he has dwarfism but knowing his personality, even at this stage, I don't think he's going to find it a problem living a normal life as a "little person".
Well folks, I am happy to say (for the first time ever), that's all the news for this month but I look forward to giving you another update on Connaire soon.
To say we are delighted with Connaires progress so far would be an understatement, we're so proud of him! As always we would like to thank all of the Health Professionals involved in Connaires care.
We would also like to thank the visitors of our website, although AMS is one of many rare genetic diseases you are enabling us to succeed in raising awareness of such conditions!
*Would you like to take part in our "MONTHLY MEDICAL UPDATE SCHEME"? Once a month you will be asked to complete a short questionaire and all of the data we have collected will be reviewed annually. At the end of each year I will be asking Geneticists from the UK and Germany ( as these professionals have great interest in AMS), to study our "Observations" and I will publish their findings on our website.
By conducting this research we hope to give a better understanding of what to expect with AMS, how to deal with the symptoms and hopefully one day discover how and why AMS occurs!
I will also be inviting various health professionals to become members in order to discuss surgical options and provide advice on where to go for any medical issues you may have.