Serenity is my first child so for me this is the norm, if you have another child with Prader-Willi Syndrome this post may help you in learning what is different for us.

Firstly the pregnancy and birth was a lot different for us compared to anyone I’ve ever know. All of our journeys are different and they always will be but after our diagnosis and doing my own research I found my journey was similar to other PWS moms, I’ve written about this in one of my earlier Blogs.

After that it was the tubes. Serenity was on oxygen when she was discharged from Neonatal for about 3 months. In addition to this she was feed via NG Tube for about a year. This was very different as I had to learn to keep track of her oxygen cylinders, change the catheters, learn how to pass an NG tube, how to aspirate it to know it was in the right place, and to feed correctly. In addition there was stock taking of all of her NG Tube feeding equipment. There was a lot of things to be weary of, such as the placement of the tube and passing any air. Serenity did move on to a pump which tube fed her after she exceeded the amount of milk of a gravity feed (60ml). This alarmed if there was a build up of air in the tube. This sounds daunting, but like driving after a few weeks its second nature. Serenity never woke up for her feeds so I never had to deal with a crying baby throughout the night, I had to set alarms every 3 hours to tube feed her.

I started back into full time working from home 4 months after having Serenity. Most people are shocked when I tell them this. ‘How do you manage full time work, motherhood and caring?’ Really the answer to this is because Serenity used to stay asleep for pretty much 24 hours a day. I had to feed every 3 hours and through the night but that was only for a few months and I never had interrupted sleep because she had such little energy she wouldn’t be awake for much time. When she was awake she wouldn’t be interested in playing or she wouldn’t make much noise, she also didn’t like being held as she would get too warm, she just used to like the company!

Another thing that’s been different for us is Serenity’s strength. We have always been told from Doctors she is ‘ developmentally delayed.’ Writing this, she is a year and a half, she can roll all over the floor, stay sitting up (but not get in the position herself) and her strength generally has improved enormously. She has just also moved up into 6-9 month clothes! As part of this she will need aids to help her milestones. She has a supportive chair to aid in the stomach muscles and posture while eating and she has a corner seat at nursery to help sitting up right for play. Her Physio has also spoken about some things to help her feet in readiness for walking, but this needs to be explored further.

Serenity’s growth hormone is a lot different. I have learned how to administer this, set the dose (as instructed by the hospital) and change the cartridge. I find you have to do a lot of chasing with this, you have to be really on it to make sure prescriptions are done and the hormone can be sent out in time before your other cartridges expire. This hasn’t been easy and other moms I’ve spoke to have had the same issues. Just set calendar reminders well in advance of your last cartridges going out of date. They last for 28 days, I’d recommend sorting the next lot of GH when you start your last one so a month in advance. I sometimes get sent two (2 months worth) or 4 (4 months worth). I will sort Serenity’s prescription out when I have just discarded number 3 out of 4 and have just started the final one. There is plenty of time then to sort out mistakes. Again, administering the hormone just becomes part of routine like brushing your teeth before bed.

The biggest thing I think is the sleep studies and the amount of consultants and appointments. The sleep studies have slowed down now but she will need them for the next few years to asses her breathing whilst she is on Growth Hormone. I think apnoea is quite common so they have to keep an eye on this. Listed in one of my other posts, the amount of consultants is quite daunting, but it is manageable. Most of them do home visits and I think if you struggle, just always ask for home visits – I always say I don’t mind so I get a mix – It gets me out of the house. I think it’s also important to do your own research. I have disagreed with some of my consultants advice and told them what I prefer to do myself, and it has worked and paid of, its best to work together. They are also discussing a sort of shared care system where some of my appointments can be blended into one. I hope this happens as it would take the load of massively.

Lastly its the characteristic things. As PWS makes the body temperature run lower, Serenity is so sensitive to the heat. If any time she is crying in the night or uncomfortable during the day its most likely she is too hot. We take her out without a coat on most times as she gets too hot and pestered when its on.

I worry about the future a lot less, its taken a lot of work but I’m happy with Serenity in the present moment.

There is a lot of things that make Serenity and he condition different but she is amazing and she gets on with all these things fine. The injections don’t bother her and she loves seeing all these different consultants. This list may seem daunting but living through it, like everything else it can get overwhelming at times but its manageable and is all so worth it for her. You got this!