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. 

Just another day in the office!

So this morning started with Ethan having a seizure. When Ethan has a seizure after 5 minutes he can have a shot of midazolam. After a further 5 minutes if the seizure hasn't stopped he can have another shot. After a second shot an ambulance has to be called. Today's seizure stopped on the tenth minute narrowingly missing needing a second shot. Whilst midazolam is a very effective drug and stops the seizures it comes with its down falls. It makes Ethan very sleepy to start with knocking him out for a few hours. But once it starts to wear off it makes him very sick. Today he was sick twice in an hour both times needing bath. The midazolam then makes Ethan very grumpy. 

Ethan's seizure are becoming more predictable now coming every 3 weeks and most weeks 3 weeks to the day. I should be getting more prepared for them but I'm not! We've had a lovely busy week seeing friends with a lot of travel and so my housework and chores have taken a battering. I've also been extremely tired what with doing fun things and Ethan getting up at 3 and 4 in the morning. But today it's made me realise that doing nice things means I'm catching up for weeks! I've sat cuddling ethan this afternoon and wanting to tidy and clean. I need to get more organised so that when this happens next week I'm prepared.

I've spent most of the afternoon crying today. You'd have thought I'd be used to Ethan having seizures by now, and generally I am, but today I kept watching him and I just kept feeling sad and helpless. I couldn't do anything to help him or take the pain away. I'm having a day where I hate the genetic disorder, i hate epilepsy and I hate midazolam, but most of all I hate the effect it all has on my baby boy. No child should ever have to go through this and no parent should ever have to go through the pain of seeing their child go through this. 

Everything's becoming increasingly harder as Ethan gets older. Just a simple trip out is hard. I constantly worry about Ethan how he will cope with new situations. He has a strict routine and gets very upset if we can't stick to it. This makes going out hard as no matter where we are I have to stick to the routine. As Ethan gets bigger its harder to move him and lift him. Yesterday was interesting having to change his nappy in the back of the car on the freezing motorway! Everyday brings a new challenge, normal things are just as hard as when he's having a bad day.  I love my baby boy and will do anything for him. Making his life easier and helping him to be happy and feel safe is the one way I feel I can help him.  All I can do to help is make Ethan as comfortable as I can. I've had my weak moment today and let it get to me but now i must put my strong exterior on and carry on for Ethan. 

Sweet dreams

Ethan has scoliosis. This means his spine is slightly curved. It's not something you immediately notice as Ethan doesn't sit or stand unaided, but when he is being held in a sitting position you really can notice it as his back curves out to the right. Ethan also has "frogged" legs! This means that when lying or sitting Ethan's legs flop down to the side in the same shape as frogs legs! Hard to describe. Ethan has had some scans done on his hips to check the joints as he doesn't weight bare all the time. We are still waiting for the results but were hoping all is well and that he just has naughty legs! 

Ethan's physio suggested a sleep system to help with his posture and improve his legs. At first I imagined this big contraption which would strap Ethan into place and I wasn't to sure at all! I obviously agreed to have it as whatever will help my little man I will at least try! When they bought the sleep system round and got it out the box I felt so relieved! It's such a simple design and I knew Ethan wouldn't be bothered by it. 

Here is the first layer which fits to the cot mattress:

This shows where Ethan needs to lie in order to be straight. On top of this sits what I describe as plastic book ends! These are what will keep Ethan straight and aim to straighten his back and keep his hips inline bringing his legs together. As part of Ethan's condition he has what's called dystonia. Which means his muscles go between being stiff and relaxed. Some days Ethan is easily able to straighten his legs and the next he could find it hard to straighten his legs because his muscles are so tight. This sleep system will hopefully help to relax his muscles and train them to be in a better position. 

Over the top of the bookends goes a new mattress which moulds the sleep system.

Ethan then lies in the sleep system. It's so simple and there's no need for him be strapped in or restricted at all.

As you can see Ethan is straight in the system and his legs are pretty straight. Ethan sleeps well in it and we're hoping to see an improvement in his posture :)