Its important to remember not to compare your child against anyone else, even with the same condition, they develop and grow all in their own ways. Even children with extra needs cannot be compared to one another.

All of Serenity’s life we have been told that all of her milestones will be delayed and that she won’t walk till three. I tend to take no notice of this kind of input from consultants because she will do it in her own time, there is no rush.

The first thing is from birth, she has always been measured on the same centile charts as children with no extra needs or conditions, I think this is wrong. There should be a chart for children with PWS so they can see if other children are following the same trends, this will also help in picking up any other growth abnormalities in my opinion. Her growth is always going to be affected so she’s never going to be suited for these charts.

Below is a summary of Serenity’s milestones:

• At Birth: No movement, unable to feed, unable to breath on her own, CPAP Machine for breathing aid, never awake
• 1 month: Came home! On 0.1l of oxygen, NG Tube fed, range of movement very small, asleep all of the time
• 2 months: Range on movement improving, she can move her hands, brings her hands up to face slowly, can move legs, asleep all day
• 3/4 months: A smile!
• 4 months: We had her first laugh! She is now of oxygen and can breath with no aid. Better range of movement, awake for a few hours a day, NG Tube fed
• 6 months: Range of movement is so much better, she can sort of roll to the side but not really stay there
• 7 months: She can hold her head up! Only for a short amount of time and this makes her really tired. She can suck on a bottle but only for a really short amount of time, can probably do 2-3ml. Concentration is good and she is interested in toys now and holding little things. She can sit upright in a Tumble Form (Really supported but can hold her head up in upright position). She started swimming lessons with Water Babies, this was adapted for her as she cant go under the water. Swimming really helped her strength I think.
• 8 months: Started first tastes with single vegetables pureed. Only small amounts about 10 – 20ml. She is awake pretty much all of the day with about 2 long naps. She can make small sounds like the ‘ma’ and ‘ba’ sound.
• 1 year: I make meals for Serenity and she manages about 100ml of each pureed meals if the consistency is right. She still cant manage lumps and is still NG tube fed for her milk. She has a whole Weetabix for breakfast. She has started to teethe, no teeth come through just yet. She can lift her feet in the air and can hold them with her hands. She can roll on to her side and stay there. We have a padded high chair, not a specialist one that she can sit in and hold herself upright with no support. (I am in touch with the OT about getting a special chair to help her in the upright position as she slouches to one side). She can drink squash out of a Sippy cup and can lift and hold it herself. She is still on the NG tube for her milk feeds but I think this is because she doesn’t like the taste of milk, she drinks a lot and can have her cup filled up about 6 times a day.
• 1 year 1 month: She can roll onto her front but she gets her arm stuck underneath her, when she can get her arm out she will be able to hold her head up on her front, and get in and out of that position herself. She doesnt really nap in the day, she will have 1 short nap a day. At swimming she can kick both her arms and legs and she can last a little bit longer without getting tired – half hour – 45 minutes. We have teeth!
• 1 year 3 months: Her control is so much better, she is so close to sitting up, she can sit up with support but she has much better head control and core control. She can copy what we do, like clapping and blowing kisses. Her concentration is amazing and she loves playing. She is such a happy baby and is always laughing. The only time she cries is when she is hot or she has trapped wind. She is much more vocal, she can say ‘momma’ and make a few more sounds. She can fit into 0-3 month shoes! She started nursery this week for 2 days a week, I think her being social will help with her development such as sounds and speech. Rolling and getting on her front is still strong but she is still getting her arm stuck underneath her. Serenity has such good energy levels and her core strength is amazing, she can bring her feet to her mouth. She has 4 teeth coming through. I’ve tried her with bigger lumps of food, she chokes on them, she can swallow them but I think its a real struggle for her – I just give her juice and she will wash it down with that. She started Growth Hormone!

Now she has started Growth Hormone (GH), we have been told her energy levels will increase even more and we will see an improvement with her muscle tone and strength quite quickly. I’m not sure how soon we will see these affects but she’s getting on with it well. The next things I think we will see of Serenity will be: To sit up by herself with no support and to get into the sitting up position herself, to begin to crawl and to get of the NG Tube for her milk. I’ve tried it in the Sippy cup but she just wont drink it. I’m not sure how long these things will take but like I said, she will do these things in her own time and I am happy just to give her the support and help she needs in order to do these things on her own. I am extremely proud of her.