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What a Year!

31 Dec 2016

As this year draws to a close I write my last blog of the year. I haven't managed to fill you all in as much as I've wanted to this year so thought this was a good chance to catch up on not only Ethan's year but us as a family too. 

 

2016 has bought us many challenges but as I begin to write this those seem to be out weighed by the good times.

The new year started a bit rough for me when I had a bit of a break down. Everything got on top of me as 2015 had bought us many challenges as a family and a lot of times where we had to pull together for various things. After I had sorted myself out I decided that I needed some time off work to make myself better. I then made the decision not to go back to work and left to be a full time mum. 

 

January then started properly with my gorgeous man proposing to me. I really truly have found someone who loves me no matter what. He supports me through everything, he tells and shows me every day how much he loves me. He is such a great daddy to our children and I couldn't have found anyone better to support us through our crazy life! We set a date as we didn't want to wait around so 2017 will bring us together as a proper family. 

 

Ethan has had such a mixed year. He has learnt so much and his awareness has increased so much. He is stronger and understanding more every day. I have lost count of how many times this year he has had work of the week and this just reflects his determination and hard work. He has jumped into school life learning how to use his eyes more to communicate. He has worked hard on his standing and can now stay in his stander for up to an hour. He has started to take reciprocal steps when in lift pants or in his walking frame. His understanding of symbols and pictures has increased and he is able to understand his routine. 

 

2016 has seen us spend a lot of time up in Bristol for appointments and stays. Ethan went in to stay in February for a week to have his gastrostomy PEG fitted and to have Botox in his calves and hamstrings. The PEG had worked so well and has allowed Ethan to sleep so much better. He appears more alert and definitely happier. He was having one cup of water a day (200ml), if that, and now we can get at least 1000ml into him a day. 

The Botox worked so well and allowed Ethan to complete physio easier every day. However this has run out and we are still awaiting a date for more Botox. Ethan has daily massages on his legs to help stretch them and we find he often needs more than one a day particularly during the night. His legs get so tight and sore so this needs a lot of stretching throughout the day a and at night.

 

Ethan at the end of 2015 and into 2016 started to have increased seizures again. He was having large ones every couple of weeks which then increased to small ones every day sometimes a couple a day. His big seizures increased so when we saw the neurologist he decided to put Ethan on a drug that he ha been on as a baby which worked well but he had side effects with it. We decided that it was a good time to try it again and it certainly has been a good drug for a few months. The neurologist also decided that it was time to see the epilepsy team in Bristol to see if we could proceed with the vns for epilepsy treatment as we just can't get the seizures controlled. 

So we went for some appointments to see the epilepsy team in Bristol and it was decided that Ethan would be a good candidate for The VNS so we were referred for tests. 

After a gruelling and horrendous week for Ethan in Bristol where he was taken off his meds it was decided that the VNS was and is the best option for Ethan. So 2017 will see another trip to Bristol for this to be inserted. After seeing Ethan off his meds and how many seizures he would be having I am very great full for the medicine that has stopped so much of the seizure activity. We hope that the VNS will help to eliminate Ethan's daily seizures which seem to be more frequent again at the moment and to hopefully limit the amount of midazolam that we need to give to him. 

 

The doctors are referring Ethan to a heart specialist to check that his heart changes are seizure related rather than another underlying problem. So this will be another trip to hospital next year as will the investigation into what's going on with his genitals as the first tests didn't show anything positive so they need to look deeper. 

 

In the summer Ethan's stars was proudly supported by the Wessex truck show who raised money to enable us to buy a heart rate monitor for Ethan. We thank all those that were involved in helping to get this life saving equipment for Ethan. 

 

Ethan has showed us that again no matter what he goes through he goes through it with a smile on his face. We are incredibly proud of all he has achieved this year. By his side he has had his little sister who has been an absolute blessing and reminds us every day how fortunate we are to have such a loving and funny little girl to get us through all the tough times. I could not be prouder of my little girl for always helping with Ethan's care and for helping to make him smile when he's sad. Dakota has changed a lot in a year and we can't wait to see 2017 when she will start school.

 

All in all 2016 treated us well but 2017 really will be our year, house move, wedding and lots of fun in between. Ethan's appointments will fill in the gaps but we continue to be proud of all he achieves.

 

Happy new year from all of us and thank you for your continued support. 

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