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Lots to Take on Board

The last few weeks have been very full on and tiring. This has led to me having exhaustion this week which meant I had to spend most of my birthday in bed. Life as a special needs mum is hard work and tiring at the best of times and I know I've spoken about Ethan and his lack of sleep before but this has been one of the main contributing factors of my exhaustion. Over the last couple of weeks Ethan has not been sleeping well. Most nights he settles late and the can be up and awake ready for the day anywhere from 2am. He is often happy and able to chat to himself but he can't do anything for himself so gets easily bored. I can't switch off when hes chatting away as I have to have the monitors on to hear in case he has a seizure. If he's not happy then i have to see to him and that usually means I'm completely awake from this time which happens most of the time. So this means neither of us get a lot of sleep! Ethan normally goes to his Dads but we needed to swap a weekend as I had a wedding to attend and didn't have anyone to have Ethan so we swapped it which meant I had Ethan two weekends in a row. Then as the final straw we also had a weeks half term in amongst all of this. I love time off with Ethan but when I'm on my own with him having to lift and carry him in and out of the car, his pushchair in and out of the car and generally full care whilst he's with me it is extra tiring. We've also had a lot of appointments recently which has meant I've had to swap a lot of my working hours to compensate this leaving me not a lot of time to catch up with all the household jobs I have to do.

I know everyone has jobs to do and i understand that but when your completely exhausted its very hard to find the time and motivation to fit them all around such small time frames and leaving yourself enough time to rest and recuperate. Ethan needs a lot of attention and care when he is home as he can't do anything for himself it's like having a newborn baby around all the time except he doesn't catch up on any sleep at all! this makes getting tasks and jobs done when Ethan is around virtually impossible. Ethan has incredibly sensitive hearing which also doesn't allow for me to catch up on those jobs once he's in bed as you can't make a lot of noise while he goes off to sleep. This is not something I've encouraged as when he was a baby i used to try to do and make noise around him but as he's got older his hearing has got more sensitive and so to avoid upset and meltdowns its easier to be quiet. I went back to work in January and I've loved the time to be myself and interact with Adults and children but it also takes up a lot of my spare time. I constantly feel like I'm running around trying to finish everything in the little time I have. Being a single mum also means if I don't get things done then it doesn't get done!!

A lot of people tell me to slow down and take it easy. Believe me if I could i would. I do a lot of charity work and fundraising for Ethan but without this he wouldn't be able to have half the equipment or therapy that he needs. I don't do a lot for myself really. I don't have hobbies anymore due to time so it is important for me to see my friends and family when I can so that I can have some me time too. Having a weekend without Ethan gives me the time to do that. This weekend allowed myself and Steve to have a child free weekend to relax and catch up on much needed sleep.

About a year ago we discovered my partner had a daughter. It's not been an easy ride for any of us over the last year but finally things are looking up and we can finally begin to be a proper family the four of us. Our weekends are starting to work out together now so we can have a proper family weekend all together every other weekend. I have loved getting to know our newest member of our family and so has Ethan. a little sister for him to protect. Our first proper full weekend the four of us was last weekend and it was very full on, but we had the best time together and I love how easy it is for us all to get on together as a little family unit. It will take us all time to adjust to this new situation and for myself and Steve it will take adjusting to giving time to each of our children at the same time. This is something I'm looking forward to doing and to be able to have some fun experiences all together.

Ethan has had some big appointments over the last year or so. Ethan has been seeing an orthopaedic surgeon for a few years who has been keeping an eye on his legs. Ethan has been struggling to stretch his leg muscles for a while. They became tighter and tighter so when we saw the surgeon in November they decided it was time to give Ethan some Botox injections to help loosen the muscles in his thighs and calves. After a long wait Ethan had the Botox this year. A trip to Bristol children's hospital for a general anaesthetic and injections in both legs, a few in each thigh and a couple in each calves. Ethan coped well with the procedure and the injections were a real success. Ethan has been able to pretty much fully straighten each leg. His right leg is still tighter but he's doing well. This has meant that physio has been a lot easier for him and means we can work harder on his legs to able to keep them straight and strengthen the muscles. He is able to stand in his standing frame for over half an hour now which before was around just ten minutes. He has extra physio sessions at school with his physios and extra sessions with us at home. Hopefully we can keep his strength up in his legs to avoid further Botox but he may need extra when this wears off.

Ethan has had his standing frame at home and school "grown" due to him growing so quickly so these are all now up to his latest measurements. Ethan's outside wheelchair has also had recent adjustments too. Ethan is growing very tall and quickly so he's now gone into age 7-8 clothes!! Ethan's feet took a while to grow but seem to be growing nicely and he's just had a new pair of size 10 school shoes which flash!

Ethan had a rough few weeks with increased seizures. Ethan had some big seizures which last around 13 minutes and lots of crying seizures around a few minutes. He had a lot in a few weeks which was more than usual so after a couple of hospital visits, tonsillitis, antibiotics and change in seizure meds we seem to be back to the normal just everyday absent seizures and gelastic seizures and are still awaiting another big seizure after all these changes.

We have been struggling to get Ethan to drink water for a few years now. We got by on the fact that he drank a couple of bottles of soya milk a day but recently he has dropped one of those and only most days drinks a few ounces in the morning. The hospice suggested talking to our paediatrician about the possibility of a gastrostomy tube for getting extra fluid in. Something I had to do a lot of thinking about but agreed it was best for getting fluids in especially when Ethan is poorly or has had a seizure. Our paediatrician agreed so after an assessment with the speech and language therapist and trying some thickener again for fluids with not a lot of extra fluid intake we have been referred to a consultant and are awaiting an appointment with them.

We have been waiting over a year for Ethan to see his opthamologist for his eyes. When we saw them some time ago they said Ethan has astigmatism in both eyes and will need glasses to help. Since then we have had about four appointments cancelled or moved so we were very happy to finally see them this month. Ethan now has a prescription for glasses so he will be getting those soon. There is no change to the backs of Ethan's eyes which is great news. His sight has improved slightly but the astigmatism has got slightly worse. The glasses may or may not help with Ethan as usually they help with reading which Ethan isn't able to do so we are going to see how he gets on with them.

Ethan has been getting on well at school and has almost completed his first year at school. Ethan has been enjoying swimming in the hydro pool, horse riding on the mechanical horse, sensory activities, music sessions, trampolining, Tacpac and starting to use the eye gaze equipment. Ethan's communication has improved lots and he is aware of the Pecs symbols they use at school and is able to concentrate and listen when shown them. He can eye point to the one he needs. The eye gaze equipment is able to track Ethan's eye movements and allows Ethan to operate simple games with his eyes. An exciting time for Ethan and his learning and i will update more at the end of term.

It has been a busy time for us both but we continue with hope and strength. Ethan has worked very hard and continues to show us his determination to succeed. I continue to be one very proud mummy.


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