When Freddie was born in June 2010 even though we were told he had a syndrome we always thought he would be ok. Even when he started being tube fed i always assumed he would work out how to feed in a few weeks & everything would be normal. Even when he was slow at meeting milestones i assumed once he got there he would be a ‘normal boy’ I think for the 1st 6 months i always thought eventually he would be ok…despite the fact he wasn’t laughing, or playing or feeding and had an endless list of issues he was still ok to me. He would catch up…he would be ok….my son wasn’t disabled…
2011 opened our eyes. We had 2/3 appointments a week and Freddie began to take over our lifes. We were constantly fighting doctors for information on Freddie but they had just had no answers.
In January Freddie went into hospital to have a gastrostomy tube fitted. I was unsure whether i was doing the right thing. His feeding was still bad but did i really want him to have an operation when he was still so small & fragile. But he was constantly pulling out his nasogastric tube & his nasal passages were so small that repassing it was so traumatic for him and he would get awful rashes on his face from all the tape. So the op was done & life was made a lot easier! We went on to have another op 6 months later to change the peg to a mickey button.
In October after a big fight with a very annoying doctor Freddie got diagnosed with Epilepsy. The doctor who had never met Freddie before tried to put the odd movements down to Freddies normal behaviour but after a big argument we finally got it sorted. We were sent for an eeg scan & although he didn’t seizure while he was hooked up the waves on the scan seemed to be consistent with an epileptic child. Funnily the diagnosis never really affected me. I think alot of people being told their child had epilepsy would be mortified but i think Freddie had so many issues that we just took it in our stride & carried on. Not sure what the future holds with the epilepsy but for now it’s sort of controlled by medicine.
Freddie had an MRI scan that came back inconclusive, Craniofacial team couldn’t decide whether to do major skull surgery on Freddie & hand doctor wanted us to wait another year before looking at doing surgery on his thumb. We saw Heart scan gave us good news as the hole seemed to be closing & we were given glasses for Freddie to help prevent an inturning eye.
Developmentally Freddie was slow. I always used to torture myself by looking at the developmental milestones to see what Freddie should be doing but i’m trying to focus on the good things Freddie can do rather than focus on what he can’t do. By the end of 2011 at 19 months Freddie had managed to wiggle around the floor on his back and is sitting up for about 10 minutes. He is beginning to communicate with shouty noises and is beginning to show a bit more interest in toys…as long as there is a part he can spin on them.
When i look at Freddie now i can see that he won’t just catch up. His behaviour is very different from what you would expect from a ‘normal child’ As much as it breaks my heart to see my baby boy not doing what he should be doing & what i want him to do i know that if i’m ever going to get on with life i have to except Freddie for who he is. I need to stop dwelling & getting down over the things he can’t do. Stop comparing him to other children & try to just enjoy him & his little ways. Possibly easier said than done.
In 2012 we should be getting help from social services with Freddie and hopefully begin looking around some special needs schools. And with the amount of hospital appointments already building up we may even get some answers to whats going on with him.
2011 for us has been a very strange year. We have gone from being a typical family to suddenly being thrown into what feels like a whole new world. A place were you feel like an alien and like you can no longer relate to people or people can no longer relate to you. Until you have a disabled child or spent alot of time with one you can never understand how hard & challenging it can be. Having children is hard enough but having a child like Freddie is beyond hard. It pushes you to breaking point, on one hand you want and need help but on the other you don’t want to leave your baby with anyone else. In 2012 alot of decisions will need to be made surrounding Freddie. I just hope whatever we decide to do works out for the best and that 2012 is a good year for us.
Also thank you to all the people who have supported us through 2011. Some amazing people xx
As Freddies to young for christmas to affect him i’m going to change it a bit to how am i going to cope!
I’ve always loved Christmas and since having my 2 babies it’s made it so much more exciting. I love buying all the presents and the wrapping and being all happy and jolly. But it is hard to enjoy it quite as much as i’d like.
Me and Evie like to snuggle up on the sofa with our hot chocs and watch a christmassy film . We do lots of christmas arts and crafts and we open our advent calenders and read Christmas stories but trying to include Freddie in this is so hard.
Thanks to someones fab idea on swan i made him a sensory advent calender. It was nice to have an alternative to a chocolate advent calender and to help him to get some sort of understand of what was going on around him. That was about as involved in the Christmas build up as Freddie has been. We did go to see Santa but he had no clue as to what was going on & i even forgot to take his picture with Santa as i was so busy trying to get one of my daughter with him 😦 Big example of how much i feel i sometimes i overlook Freddie. In situation like that where Evie understands it more she gets all the attention.
Christmas is being spent in my parents this year with all the family 🙂 Not going to be able to take all of Freddie’s equipment with me so i won’t be able to bath him properly so it will be flannel washes all week and not sure how i’m going to cope with out his little chair! His sitting has gone really bad again. Today he managed 5/10 seconds but then just let himself fall (My back is aching from constantly sitting him back up) My partner is leaving me at my parents for a week over Christmas as he has to go back home to work – just hoping i will manage having Freddie in a different environment on my own. It’s hard enough to cope at home.
I think the main think i know i’m going to struggle with is the whole present situation. When he was born i always wanted him to be a proper little boy. He was going to have the best toy garage! I was going to buy him it for his 1st birthday but he wasn’t even picking up toys let alone able to play with a garage. So his birthday past & i thought never mind it will go on the Christmas list…but it’s still WAY out of his development range. He still really struggles with holding things in his hands but he tries very hard bless him.
I’m going to enjoy Christmas as much as i can but watching my boy not tucking into a big Christmas dinner or opening presents or running around all excited will be hard but i will enjoy it as best i can and try and make both my babies days extra special.
Merry Christmas all xx
So on friday we recieved a letter from our community Paediatrican. It was a write up from an appointment we had with him a few weeks ago. But this letter contained information that was never discussed with us. Seemingly from an eeg scan Freddie had a few months ago seems to suggest he either had a very rare brain disorder or was starved of oxygen at birth. I was horrified that we would recieve news like this through the post! Luckily we had an appointment with our Paediatrican on the Tuesday so we were going to have the chance to ask question and see what this meant….
So Tuesday arrives and i feel anxious all day waiting for this appointment. I was so worried about what they were going to say about his eeg scan and if it’s going to be awful news. Hospital appointments have taken over our lives lately. It seems we are constantly there and it takes so much out of you to make sure you are all ready on time and have got all your equipment with you.
When we went into our appointment our normal Paediatrician wasn’t there. Instead we had a doctor whom i had never seen before. The appointment was so pointless and a total waste of my time. The doctor had no idea about Freddie and it was so awkward talking to her. I asked about his eeg and seemingly he doesn’t have a brain disorder or was starved at oxygen at birth and if our comm paed had just checked his mri scan he would have realised that because the mri was clear he couldn’t have either of these but instead we were left to spend 4 days scared to death of what new illness our son had.
I am now at the stage where i don’t know where to turn. I feel so incredibly let down by all the doctors and am sick of the NHS. I understand we may never get a diagnosis but why put me and my family through unnecessary heart ache. He is my son and i’m sick of them treating him like just another patient. I’m at the stage where i want to tell them all where to go .
I’m fed up of constantly feeling like i’m banging my head against a brick wall. I can’t help but feel that if they don’t know whats wrong with Freddie then surely hes ok and it’s just my fault hes behind and i hate feeling like that. I’m sick of crying over a situation i feel i have no control over. All i want is whats best for Freddie and i don’t feel like the nhs are offering me anywhere near the quality of help and care he deserves.
The last 2 days we have been on our first trip to Brainwave.
When I originally rang up to enquire about it me & my partner were fairly skeptical…What could they do that our regular physio couldn’t? But I must say I have come away from their and i’m so pleased with what they have done for us!
We arrived on the Wednesday morning at 9.30am and when we entered the building I could instantly tell it was going to be good. On the board infront of us was Freddies name up in big silver letters. It may only have been a small touch but it’s things like that which make you feel welcome and I knew that the whole day would be about Freddie. They had great facilities, everything you could need to help you feel relaxed.
They started the day with going over the past 18 months of Freddies life…Not something I like to talk about much as it’s times like that when it hits you how hard its been but I knew that by telling them this they could help us. They then looked at what he could and couldn’t do and took the time to discuss why he wasn’t doing what he should be. They then went off and made a plan based around Freddie for us to do at home everyday with him. They also plotted where he was developmentally up to on a graph. It was only 3-6 months. I felt a bit sick to think he was so behind but from looking at this plan I could see how much it would help him. We spent the afternoon trying out the exercise plan with Freddie. The exercises were going to take around 20-30 minutes and they all seemed great and I could see how much potential it had in helping Freddie. Most of the exercises were to try and get him to use the trunk of his body and use his back muscles. They were also keen for him to go onto his tummy…something Freddie has never liked. He screamed and cried through alot of the plan and it seemed to stress him out and trigger off his epilepsy. To try and make it easier for him they split the plan up into 3 x 10 minute exercises and found different ways to distract him…letting him pat a balloon seem to calm him down a bit. To end the day on a high we spent some time in their fab sensory room. Freddie loved their mirrors and bubble lamp!
After such an amazing day I went home and all them highs and positive feelings stopped. I had so much running through my head….Was it my fault Freddie was like this?….Was I letting him down?… Why didn’t I think to do exercises like this with him before? Probably quite a normal feeling for any parent with a disabled child.
We went back the following day and they camcorded all the plan and put in onto a dvd and I had a go at doing all the exercises with Freddie. It was HARD work. He is so strong and put up such a fight and it was so hard to hear him crying and screaming and getting so worked up over a simple exercise. But I know that in order to help Freddie to walk I need to put him through this. To end the day we went back in the sensory room for some fun!
Going to Brainwave was an amazing experience. It is hard to watch your child not be able to do something that would come naturally to a ‘normal’ child. With my daughter she sat up unaided after a few weeks of support, she stood independently with ease, she played with toys and laughed naturally whereas with Freddie simple things like twisting his hips, touching toys across his midline, laying on his tummy and sitting properly using his back muscles are all so hard for Freddie to do and understand. But the help and support they offer you is great. Something you would never get from the NHS. 2 days of 1:1 intensive therapy was definatly worth the money they charge. And I can now see that no it’s not my fault Freddie so far behind, no i’m not letting him down and the reason I never did these exercise before is because they are not natural things to do with a child and without guidance and support i would never know what to do.