Just one of those weeks!

This weeks been hard on both myself and Ethan. With a few new things added into our routine it's been hard to adjust.

Two weeks ago saw the start of myself going back to work 3 mornings a week and Ethan starting a new preschool two days a week. The first week went extremely well. I was in bed by nine having had Ethan settled by half 7 every night. Yes we were still up at 5 but that was ok because I was getting enough sleep. Washing was done, house work was up to date and lunch boxes were ready when they needed to be!! I thought this is going to be fine when I go back to uni! Then this week arrived!!

Monday was good then it started to go downhill Tuesday! I over did it trying to decorate Ethan's bedroom. I needed to get this done before the ceiling tracks come as won't be able to do this as easy when their in. I did two coats on two walls on Tuesday then finished the other two walls on Thursday. Ethan decided this week he didn't really need sleep so didn't settle until late then had disturbed nights and got up some mornings from 3 and 4! Then I woke up Friday with a very painful neck and shoulder unable to move properly followed by Ethan waking with a seizure which proved hard work for me that day. So luckily my knight in shining armour came to help out for a few hours in the afternoon (Steve)! After a hard day I thought a good nights sleep would help but no I woke up feeling worse! Ethan had another seizure then proceeded to be unsettled all day having small seizures. Last night he was sick and had a temperature.

This morning I woke up feeling better but still with a stiff neck and painful shoulder although much better than it has been. I took Ethan to PAU (paediatric assessment unit) at the hospital. I could've taken him to the out of hours doctors but I knew they wouldn't be able to put up his seizure meds up if Eth needed them to be put up. After examining Ethan the doctor said he had a throat virus which would explain the temp and increased seizures. He also put Ethan's seizure meds up slightly as he hadn't had a change in meds for a while. I'm always reluctant to do this so I leave it until it really needs to be done. As Ethan grows rapidly the meds need to be increased but this hasn't been done for quite a while so I decided we could go up a bit. Hopefully with paracetamol, cuddles and an increase in seizure meds we should see an improvement in a few days.

With a hard and tiring week which has seen Ethan poorly, a lack of sleep, complete disorganisation, a phone in sick to work to look after Ethan, Ethan missing his last ever day at the special needs preschool and a cancelled trip to longleat with friends it's left me questioning whether I'm ready to go back to uni and add even more stress into this already complicated routine!! So after a lot of thought I will be talking to the uni tomorrow to see if I can defer my place until next year. This will give us time to adjust to me being back at work part time and Ethan doing more hours at just one preschool now, then when Ethan goes to school full time next year I will hopefully be ready to give my degree the full attention that it will need.

I'm very grateful this week for all those who have helped pick up medicines (Karen), shopping (Gemma) or helped look after us (mum and Steve) and those who have cheered me up (Faye Freya and river!). So here's to what will hopefully be a more settled week which will end on Friday with a relaxing trip to the children's hospice and a much needed break for the weekend!

Making memories

What a wonderful summer we have had making memories. We've had wonderful trips out to various places (well mostly wonderful trips!! One bad experience at the sea life centre!!). We arranged to spend at least one day a week with Ethan's best buddy Samuel. This has worked up until the last week when neither of the boys were up to meeting due to colds. The boys have loved spending time together. We've spent time in Samuel's Nannys hot tub, playing at the park, walk around nine springs,  sealife centre, activity day at fiveways and play days at both of our houses.
We have also enjoyed a trip to longleat with our friends Kate and Jess, a trip to Weymouth to see the carnival and fireworks with our lovely friends and been to visit lots of friends and family.

I have really enjoyed spending time with my special little man. I wanted to make his time off from preschool really special. In amongst days out we've had some lovely days chilling at home and exploring different messy activities. I've loved seeing his face light up when he's enjoying something, which has been a lot.

In amongst these lovely times there have been some hard times too!! Ethan doesn't like the heat so the first few weeks he really struggled to sleep and even with the cooler weather he's still struggled to sleep. He's not been settling down to sleep until gone ten most nights and then still waking up by 5. This has been pretty full on with no sleep but it could be worse!! On a plus he's only had one seizure which has been good and has now done 3 weeks without one so far.

During the week I'm used to having a bit of respite 3 mornings a week while Ethan is at preschool just to get on with jobs or catch up with sleep. Loosing this during the summer has been hard as the one day Ethan's with his dad has been filled with everything I need to get done plus trying to have some time to myself. As much as I've loved spending time with Ethan it's been very full on. I'm looking forward to getting back into a routine in September even though it may get a little crazy soon! I passed my foundation degree In early years a couple of years ago and after a year off and a year trying to get a c in my gcse maths so I could get onto the top up course I've finally done it and am back to uni in September. I'm also starting volunteering for a few mornings a week at the local children's centre. While this is all very exciting I am also very scared as it will be pretty full on for us but its something I need to do to make our future better.

This week Ethan goes back to preschool two mornings a week then the following week he starts his new preschool and will begin another two mornings at a mainstream preschool which will be gradually built up to him doing a full day twice a week. I'm very excited for this new change for Ethan. I wanted to add in extra hours for him so that he gets used to it before he starts school the following year. He will be attending his special preschool for 6 hours a week and the mainstream one for 12 hours. Hopefully this will help his development and will also give me time to study, work and get the housework done!

We are off for one more day trip to longleat tomorrow as our last summer holiday treat and to make the most of our annual passes. Then it's all go from Wednesday. Here's to fun, excitement, scary times and a better future!!

Time really does fly by!

So the last few months have been pretty crazy! I don't feel like we've stopped until this week. We've had a wonderful time visiting friends, celebrating weddings and birthdays and spending time with family. I thought I'd take this opportunity to catch you up to speed with all that's been happening with Ethan over the last month or so.

Ethan's enjoyed spending time with special friends including his best friends Samuel and Freya.

Ethan has a special bond with Samuel. They absolutely love each other and get very excited when they see each other. They know their both special and so this brings them closer together. Ethan and Freya also have a special bond but for a different reason. They are 2 months apart and have grown up together. Ethan adores Freya and she adores him. Freya doesn't see Ethan as any different to her and she loves sharing experiences with him making sure he's involved in everything she does. She also has a special voice for Ethan which is super cute.

We also met another special friend another Samuel. Ethan and Samuel have the same condition so it was lovely to finally meet the gorgeous little man. These two share a unique bond and I hope this will be the start of a wonderful friendship.

So in amongst spending time with Ethan's friends we've had a few changes with equipment. Ethan hasn't had a standing frame for a while at home as the last one wasn't supportive enough. We have now chosen a lecky my go stander which will support Ethan from the back again. He still needs the support behind him so that he can strengthen his muscles. We have been searching for a bath seat for months, trialling different ones and have finally found one which will support Ethan properly and it will be with us soon.

After a lot of deliberating I have had to admit defeat and have accepted a hoist to help with lifting Ethan. We have measured for ceiling tracks in the lounge bedroom and bathroom to help lift Ethan up from the floor, out of bed and from the bath. In the meantime we have had a mobile hoist arrive to trial. It doesn't work in the bathroom so we are in the process of applying for ceiling tracks in the bathroom.

This week we have also had a ramp put in to help us get into the front of our house as we had two steps which were getting harder to push Ethan over. This has made things an awful lot easier and will continue to help support us as Ethan grows bigger.

Accepting all these things has been hard going as they're all permanent and a constant reminder that my baby boy will need help every day. I've come to terms with it all because I know it's what's best for Ethan but that doesn't mean it's any easier to accept.

On a happier note I can now confirm that Ethan is now able to roll from his back onto his front without help. He's been doing it for a couple of weeks and I couldn't be prouder. He's worked so hard to get here. He's slowly working out that if he rolls over he has to be on his tummy and so is starting to enjoy it!

It's been a hectic couple of months with ups and downs as always. But like always my baby bit smiles through it all! He continues to show determination and strength to meet each days new challenges. The next couple of months will see new challenges with the start of a new mainstream preschool but I have no doubt that Ethan will tackle every new day as it comes :).

Special times

This weekend I went away with friends so Ethan had a weekend with his Daddy. Leaving Ethan this weekend was particularly hard because he was poorly. I knew he was in safe hands but all I want to do when he's poorly is hold him in my arms to make him better. On my return today I was greeted with lovely smiles from my little man. As we cuddled throughout the afternoon and played with his toys I began to take in every little bit of what he was doing. I spend all my time with my baby boy and notice different things but this time away made me notice different things. Despite being poorly today my baby felt so strong. He held me tighter, he stood up straighter but more than that he was using his arms more. After lots of cuddles I put Ethan on his tummy on his cushion. Not only did Ethan hold his head up by himself but he was beginning to push up with his left arm. I placed his toy in front of him and he was moving his arms to touch the buttons. I watched with so much more intensity like I hadn't seen him for so long! He watched as he pressed a button, then moved his arm to press the button again.

Spending so much time with someone you take everything for granted. Today I had my eyes opened again to the amazing achievements of my baby boy. He amazes me every day with his strength and determination. He has been poorly this week with a bad throat and chest. We started him on antibiotics but unfortunately it seems he's allergic to penicillin. He's had numerous small seizures this week and spent all of yesterday being sick. Yet today despite having another seizure this morning he was so happy this afternoon. He amazes me with how strong he is. He was quiet and cuddly but so content. Coming home to my special boy today was amazing.

Everyone tells me it's good to have time for myself and relax but this weekend was even harder to relax. You never fully switch off when your a parent. I had an amazing time but Ethan was always on my mind.
I love having time to myself but coming home today made me realise how much I love Ethan and how much my life is so much brighter and better with him in it. Life with a child with a life limiting disorder is hard sometimes but days like today reminded that none of the stress of appointments, the rushing around to fit everything into a day or the sleepless nights matters because our days together are precious and should be treasured in every single way.

It's only the beginning :)

BIBIC

About a year ago I started looking for new ways to help and encourage Ethan's development. As a mum I want the best for my son and want to help him develop in every way I can. Since a young age Ethan has been seeing an NHS physiotherapist and occupational therapist. Ethan absolutely adores them and has been amazingly accepting of the exercises they gave him. As time went on I started to wonder if there was more I could be doing for my baby boy.

Watching other people's children learn to sit, then crawl and then walk has not been easy. For a while I didn't notice it, but then I started to notice it more especially when children much younger than Ethan started doing things he couldn't. There is nothing I want more than for my baby boy to be able to be running around causing havoc! I started to look for more that I could do for Ethan and that's when a friend suggested BIBIC.

I decided to look into it and started by finding their website. On there were testimonials from parents who were told their child would never walk and yet with the help of a BIBIC program their child had learnt the skills they needed and had started walking! I wanted this for Ethan so I started the process! Ethan has an initial assessment which was over the phone. We discussed Ethan and his strengths and what we wanted help with. My main concerns at the time was Ethan's head control and the fact that he didn't open his hands. We booked the first two day assessment for July last year.

We went to the clinic in Bridgwater for the first of our two days their. On the first day the therapists got to know Ethan. They watched him and assessed what skills he had and what skills he lacked. Ethan worked extremely hard that day and was rewarded with a dip in the sensory pool there. Ethan's development was plotted onto a developmental book which we would get to keep. Ethan didn't tick many boxes on this first assessment but he did tick more than I thought he would. On the second day we went back for them to show us Ethan's program.

The program was to be put into place everyday with Ethan at home. The exercises would take half an hour each session and would work alongside the physio he already had in place. We set targets to Improve Ethan's head control, open his hands and to help encourage leg control. I will always remember what the therapist said to me that day.... "We will get his hands open". This filled me with such hope. We went home and put the program into place which included; full body massage with vibrating body massager, head control exercises, massage to the hand, exercises to encourage the hands to be used, activities to encourage eye control, creeping along a mat and exercises to encourage leg control amongst other things.

After four months we returned to BIBIC. I was so excited to show them all little am had learnt. In just four months Ethan's head control had hugely improved and was holding his head up for more than 50% of the time, his eye control had improved slightly, general strength was better, but above all Ethan's hands were opening! Yes he still has them closed a lot but he was opening and closing them all by himself! I was over the moon! With all this improvement Ethan had ticked more boxes and had moved up a bit in his development chart. Ethan's program was tweaked and a coup,e of new exercises were added and another appointment booked for 5 months time.

We returned for the next assessment last week. This was by far a very exciting visit! Ethan's head control had increased again and is now holding his head up for 90% of the time, hands open for around 80% of the time, vision and communication improved and major improvements in arm control and bringing them into the midline (something Ethan wasn't doing at all). They were so impressed as were we. Ethan moved up 20 points on his development chart and moved into another development area.

Ethan has worked incredibly hard. He never complains and always willingly does his exercises. He laughs uncontrollably at the massage and loves the singing in the program. I am so overwhelmed by the progress Ethan is making, I never thought my little man would be able to do all he is doing and every little milestone is massive to us. Without the help of this program and Ethan's hard work he  would not be doing as we'll as he is now. He's made such progress in less than a year and I cannot wait to see what he does next!

BIBIC is a charity and so all their money is fundraised or donated. We pay for the treatment Ethan receives. We however only pay a small percentage of what the treatment actually costs. Without the support of generous people the clinic would not be able to run and help support children just like Ethan. What they do changes lives and so they need your support, please visit their website to learn how you could help them to continue their fantastic work. Www.bibic.org.uk

Faye and Angel

In my last blog you read about special friends. I have the most amazing and supportive friends and family who help us out a lot, but there are two of my best friends who we really couldn't live without, Faye and Angel. They are the most amazing couple and most amazing friends. They are not only my friends but their like family. I've never met anyone as selfless or more willing to do anything they can to help other people. They make me smile every time I see them, laugh when I'm sad, are my shoulder to cry on, hold my hand when I need support, give me advice, tell me when I'm being stupid or when I need to do something for myself. But above all this they have provided the best support network Ethan and I could ever need.

Faye and Angel have been there for both myself and Ethan through everything. This journey has bought highs and kows and Faye and Angel have been there through all of them. Their two of a very small handful of people I can truly count on to be there for me and Ethan. They unconditionally love Ethan and have never treated Ethan any differently. They look after Ethan with such care and ensure he is involved in everything. They are thoughtful and always ensure Ethan's presents are catered for his needs and will truly be able to allow him to use them. They are always up for fundraising and getting involved in whatever crazy idea I have next to raise money! 

Faye and Angel are Ethan's godparents and I truly believe I couldn't have made a better choice. Ethan absolutely adores them both. Ethan responds to the sound of both of their voices and truly knows who they are. He smiles and laughs with them both and is more than content when he is with them. I know that I can fully trust them with my precious baby boy because I know that they want what's best for Ethan and that they would never treat him any differently to their own children. Ethan adores their children because they have been bought up so well and really reflect the amazingness of their parents.

It's very rare in life to find people like this who would do anything for you, who would drop anything to be there to help or to help make our life easier. They truly support us and take an interest in everything we do and have to go through. I know their always at the end of the phone or a short drive away. I feel truly honoured to have them as my friends and honestly love them to pieces. Mine and Ethan's life wouldn't be the same without them and We would both like to say a huge thankyou to you both for all you do for us. We love you both and thankyou for being our amazing friends and for being a huge and special part of our life. People come and go but I know you will be a part of our lives forever.

Special friends

So this special journey were on brings such highs and lows everyday. When I think we've had a rough week with seizures and no sleep I then look around and see we're not suffering as much as others we know. Having a child who has a life limiting condition is hard because along with it we meet other children who are more vulnerable than Ethan, families who are suffering every single day, families whose children don't make it through, children who are put through pain every single day, brave children who still continue to smile even though their suffering but more than that families who unconditionally love their children no matter what.

However hard this special journey is without it we wouldn't have met the amazingly strong families and built such strong new friendships. I have amazing friends and family who accept Ethan for who he is, but no one truly understands our special journey as much as those who are actually on the same special journey. They understand the lack of sleep, the prejudice our children face, the looks of discust because our children are different, the heartache of seeing our children have seizures, the hard reality that our children may never walk or talk or be able to do things for them selves and the fact that our children can't tell us how they feel or how their condition really affects them.

On this journey unfortunately not all of our special children make it through. Whilst we can all feel the pain of the families going through it, you just can't fully feel that pain of loosing a child until you have gone through it yourself. I cannot imagine how hard it must be for these parents. We can do our best to be there and support but for these families the only people who can truly help them is those in the same position. 

Every day I am reminded of the harsh reality of this life. I treasure every moment I have with my special boy and will continue to hold him tight and bring happiness to him every day. Having people on the same journey makes it easier to understand how your feeling. Seeing how strong others going through harder situations is what keeps me strong. I try to not moan about the hard times as I know that just round the corner someone else is going through a harder time than me. I put to you today to live your life without regrets, love those who are close to you and treasure every precious moment you have with your children. Imagine how others are feeling before you complain about your own life or how your child is acting up. I would love more than anything for Ethan to be running around causing havoc and being "normal". The most important thing is to remember someone else is worse off.

My son is special and is loved unconditionally no matter what. He makes me smile every day and amazes me with his strength and determination. He has special friends who are even stronger and it amazes me that no matter what's thrown at them they carry on. Their bodies go through so much and it's so unfair. But their here with us and that's all we need to remember and treasure. They are no different to other children and I thank those of you who see them as no different. My heart goes out to those who have lost their special children on this special journey and pray you will find strength to live on in their memory and make them proud. 

To all my special friends you are amazing  and so are your special children. Thankyou for understanding and helping us through.