What a year!

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. 

Don't judge a book by its cover

Some people just absolutely do not get how hard and busy our life is caring for a child with complex needs. I am completely and utterly mentally and physically drained all of the time. Looking after Ethan is a full time job 24/7. 

I do the majority of his care on my own. Ethan goes to his dad's every other weekend. This means I have two full on weeks with Ethan full of sleepless nights, attending countless appointments, lifting in and out of the car, taking apart and putting the chair in the car and full care of a child who is unable to meet any of his care needs himself. 

I order his medicines and nappies to ensure we don't run out. I rearrange and book appointments. I do his physiotherapy and daily stretching of his muscles and massage. I administer life saving medicines daily to keep my son alive. 

By the time these two weeks are up I am exhausted. I am in need of lots of sleep which I cannot catch up on in just two nights. I have to cancel a lot of plans on theses weekends because sometimes my body just shuts down and I become poorly and unable to carry on. These weekends are to relax and gather my thoughts ready for mummy duties on a Sunday night again but I still have a flat to look after and ensure I am back in the game ready for the next two weeks. 

This leaves very little time for me to do anything else at all. I also have all the usual jobs that come with having a family. My flat gets neglected because obviously my sons needs are greater than a clean home or a tidy garden or a clean car. 

I would rather wash feed and encourage my sons development above anything else because he is all that matters. 

I have been working on top of all of this for the last year. My days off in the week are full of appointments seeing lots of health professionals for Ethan's varying conditions and needs. They are also full of tidying, cleaning and washing. All of this is done on very little sleep as Ethan is not a great sleeper!! Then every couple of weeks a seizure is thrown in to keep me on my toes! This throws everything out the window and wipes us both out! Seeing your child go through this traumatic experience is horrific, the thoughts that your child may not come out of it are overwhelming and this emotional strain is what wipes me out after them. 

I am so incredibly thankful that my baby boy is alive and well and that really is all that matters. He is my absolute world and to me he matters more than a clean house, garden or car. So before you judge all the mess that surrounds me why not think about when I am supposed to fit all of this in when my schedule is so tight and full as it is. I don't have a lot of down time but I still have to fit it in otherwise I would not be able to carry on giving the standard of care and love to Ethan that I do. 

Ethan is a loving happy boy and his needs for me come above anything else. 

I am no longer a single parent and this makes me incredibly happy! I have an incredibly supportive and loving partner who supports us in every way. He too is also mentally and physically drained. He works full time all week and then helps with all the care when he is home from work. Yes some of the pressure has been lifted for me but it still doesn't mean there isn't extra time for me. We do everything together as Ethan is getting bigger and his needs are increasing. It's not often a case of one or the other to meet these needs its more a case of needing two people to meet these needs. Steve does a lot of the manual lifting for me which I am unable to do. He has quickly adapted to life with a child with complex needs and helps with the stretching and medicines and water feeds. But above all he provides me with emotional support. He takes a lot from me because I am tired and worn out and constantly on edge as to what's going to happen next. He is an incredible human being who loves me and Ethan no matter what. He supports us in a way no one can imagine. 

Together we can face the world and those that judge. It's hard to deal with this on top of everything else. My emotional limits are exhausted and I would rather not have to deal with the extra stress of people who judge us. So before you judge that my flat, my garden or car are not up to your cleanliness or tidiness standards please look at all the facts and decide what's more important. Because for me having a child who is happy and thriving and has all their needs met far outways anything else! 

August can't come quick enough!

August can't come quick enough, the 11th to be precise. This is the day I've been waiting for, the day my car gets paid off. When Ethan was born I had a Vauxhall Astra sports hatch. It was lovely I loved it but when Ethan needed a specialised wheelchair it wouldn't fit in my boot so I bought a bigger car on finance, a Vauxhall zafira. It's lasted us for the last couple of years and last year we got Ethan a new car seat which turns to help make it easier to get him in and out. This is much easier. The problem is the wheelchair. It is so heavy and has to be taken apart every time it gets put in the boot. This makes going out with Ethan harder and puts a lot of strain on my back. It's easier when Steve is with me because we can take it in turns lowering the pain to both our backs! 

Today Ethan had a dentist appointment. This meant he needed picking up from school, going to the dentist and then back to school. This meant 4 lots of lifting the wheelchair and Ethan into and out of the car. So tonight I was very glad of the hoists to lift Ethan all evening. My backs feeling a bit better this evening after a rest which is good.

By the end of the day most days I ache. Some nights I struggle to sit still or even stay sat on the sofa due to the aching. Our day usually starts early and today was no exception! Ethan was wide awake at 3.30 this morning then was grumpy which meant lots of cuddles until school! 

He came home happier and we managed to have a mini disco in his bedroom while I swung him in his hoist sling! He was laughing away it was lovely! We had a lovely few hours before bed but then I noticed he had a bit of a warm head so checked his temp and it was slightly high. Ethan struggles to control his temperature so we have to keep an eye on him getting hot as it can cause seizures. I put him to bed as as I did he had a small seizure bang on!! He settled and has woken having another few minute one. 

So although I'm tired and achy tonight I will be sleeping very lightly to listen out extra hard for my baby boy. 

So August can't come quick enough so that on tired days like today I won't be quite as achy from lifting the chair in and out the car!!