As this year comes to a close its always nice to look back on the year you've had. As always one of highs and lows, excitement and sadness.
I went back to work in January so have been back for a year now. I have really enjoyed being back. I think I've finally got the right balance between working and resting. Ethan has a lot of appointments so I can still only work part time so I can go to all of these. The start of the year went well and the first few terms were good but since September I feel like I've just not stopped!! Ethan had lots of appointments which took up a lot of my days off leaving not a lot of time to get housework done or catch up on much needed sleep. I have made it through and have had a much needed rest over this holiday.
Ethan's health has been pretty good this year. Hardly any infections or need for antibiotics which is good. He did have chickenpox which as his immune system is fragile he took a real battering with it. It knocked him for six and he was completely covered taking 3 weeks to heal.
Think we were both bored by the end of it and I was ready to go back to work on the third week!!
Appointment wise things have been mostly positive. Ethan's legs continue to be tight so lots of massage and because his Botox was a success they have agreed to keep this rolling so every 6 months he will have Botox to relax his muscles making it easier to stretch his legs and help make them stronger.
Ethan has been struggling with drinking fluids for a while now and after being referred to speech and language for assessments and then to see a gastric specialist it has been decided that the best option for Ethan is to have a gastrostomy tube into his stomach to help get fluids into Ethan. This can also be used for meds when needed. When Ethan has a seizure it's extra hard to get anything into him as he is so out of it that this will greatly help. We are hoping this operation will be in the new year sometime and that we aren't waiting too long!
Eating wise Ethan is continuing to develop and is beginning to accept more lumps in his food and tolerating them without choking which is great.
Ethan's seizures have been increased this year. He has been having a lot more small seizures almost daily sometimes. He has had a couple of medication changes this year to help with this and now he has reached the top of his allowances. This means we will be looking at either a change in meds or looking at a new device called a VNS to help deal with Ethan's seizures more effectively. This will be something we will be working on after Christmas.
Ethan's eyes have become stronger and more focused and it was decided that he needed glasses to help with astigmatism in both eyes. The glasses have helped loads! Ethan focuses better on people and especially the television. He is doing well with his eye gaze which is really positive. He is also using PEC symbols at school which helps him know what's coming next and he is now able to choose the right symbol when asked to find it. This is very exciting for us and we hope this will continue to develop.
Physio wise Ethan is doing really well and working very hard at all his programmes. He shows great strength and determination everyday it amazes us all. His back has become so much stronger and he even managed to sit unaided on Christmas Day! This is a massive achievement and will help open up so much for Ethan! His arms are become stronger and he is beginning to move them more. Especially grabbing things like my hair which he finds hilarious! We will continue to do all we can to encourage this next year.
Ethan continues to be enjoying school and getting the most out of it! He loves swimming and riding on thunder the mechanical horse. He enjoys his ride on the school bus and is always laughing and "singing"!
Ethan's sleep has not been great and this becomes increasingly harder for me to cope with everyday life when I am so tired! Ethan just carries on with no sleep not sure how he does it! This has meant missing a few days here and there as I've been so tired. I also got very poorly in the summer and after lots of tests it has been put down to exhaustion. I am beginning to listen to my body and having to slow down when needed and try to catch up on sleep when I can in between everything else. We applied for an overnight carer for once a week and this has been accepted so we look forward to someone joining us in the new year so I can get one full nights sleep in once a week! This will increase to two nights in the holiday. We lost our carer in October and we haven't had a replacement so this has been hard on me. Having relied on a few hours extra a week to catch up on things then going to nothing was quite hard. Hoping that having some sleep will help next year!
The biggest change for us all is getting used to having another little person around! Becoming a step mother has been challenging but fun! I have loved getting to know Dakota and we have a strong bond which is like no other. Ethan has gained a little sister who he loves. Our little family has been completed (for now anyway!). It's been a tough year for us all but we have come out of it stronger together and happier than ever. We are excited for next year to continue our journey together as a family.
So as another year passes we look forward to the next. We again remember those who we have lost on our way and those who are in worse situations than us. Please never take anything for granted and love those who are near to you and spend time letting them know how special they are to you.