Hi

[shelley22]

I'm not really sure why I am posting, I think I'm after some support and see if anyone is in or has been in the same position.

My son is 14 weeks, he didnt have a great start to life with an infection plus lots and lots of testing. He is behind in his development, he has a weak sucking reflex so has an NG tube and he has weak muscle tone and he also has little tremors. He has been to Birmingham Childrens Hospital, he is under various teams: speech and language, physio, neuro, community nurses but they cant give us any idea of what they are actually looking for and what is wrong or really give us any answer as to why he is like he is.

I know in theory there are many people who are worse off than us and have children who have lots of special needs which I feel awful about moaning about the few little things Oliver has but Im finding it really difficult that all anyone can say is basically wait and see.

Sorry for the moan I suppose I just want some advice

 

[RebeccaG]

What is horrible is the 'not knowing'. My son started having seizures at 8 weeks and it has been just like an awful nightmare. I also think that I shouldn't moan as he is such a gorgeous happy boy and there are babies that are really ill. We are currently waiting for MRI results after the EEG detected focal seizures. I have gone through a whole range of emotions of 'why me' etc. I think it is normal to feel like this and I'm sorry I can't offer more advice. But I have found just taking one day at a time and enjoying your gorgeous boy as much as you can.

 

[shelley22]

Thanks I am finding it slightly easier day by day. Oliver had an MRi at 3 weeks old but they have told us that any brain injury he may have can be covered up so they have to keep an on his development and review whether he will need another MRi in April. His tremors where worse but they have lessened, most of his tests came back OK but weren't completely normal :S what does that even mean? lol. Sometimes I wish you could just shake the doctors and say give me a clue!!

 

[Midnight_Fairy]

Hi Shelly xxx please dont be so hard on yourself x

 

[Marleysgirl]

I know what it's like to have so many professionals involved in your son's life, during A's first two years I had to keep lists of who did what & when

One recommendation I would make is that you try to ascertain just WHO is going to act as a co-ordinator for his various care needs, perhaps have a word with HV and ask their opinion. Someone needs to take an overview of the situation and ensure the various specialist teams are remembering to work together and inform each other of developments. (Otherwise you will get hoarse from repeating the same things to each individual specialist at each appointment!)

 

[Torsornin]

 

[RebeccaG]

Oh Shelley I know! We had an appointment the other day with the consultant and I thought we were going to get results and it was just a check on how things are going - I actually came away feeling worse as I was asking lots of questions and he just sort of said well every baby is different etc and it's not possible to tell without the MRI results, he also spoke really quickly and clearly thought we were more clever than we are as came away totally confused! He has however referred us to Addenbrooks which are meant to be really good so that is a positive. I feel like I can never relax and worry about the normal baby stuff which is also I imagine how you feel? xxxx

 

[shelley22]

Thanks everyone
its difficult to not be hard on yourself when people are worse off than you are, thats what makes me feel so bad, I just cant get out of that cycle!

I have now been referred to a child development centre where a community paediatrician will work with the various community development teams and make sure they all know what is going on, I asked my health visitor what exactly happens and she told me that and also that I will receive a blue file with all of Olivers history and notes in to hand to people when I go for appointments etc as like you say you just get hoarse from repeating yourself and i must admit i get sick of saying it and having to tell them that we dont actually know whats wrong. Sometimes I want to hit them over the head with his file and say why dont you just read his notes so I dont have to relive what we've already had to go through again and again! Hopefully the blue file will help stop that and if not it will make a great weapon for knocking sense into them so that they actually read up before they see us.

That is definitely how I feel Rebecca, it feels like they just talk a load of jumbled up words! I wonder if they dont actually realise how they make parents feel although that is their job you'd think they would have learnt. When we were in hospital for the first few weeks with Oliver it got to a point were we had to get angry with them for them to sit and actually tell us everything in a way we understood.

 

[shelley22]

Oh and Yes I also have to write lists of what Im doing and when, I have to work going to groups and seeing friends and family around his various appointments. Im actually going away in a couple of weeks and I have a whole week without an appointment, thats exciting for me lol!

 

[Midnight_Fairy]

I know the feeling about appointments lol I hope you have a lovely time xx

 

[JASMAK]

He's so cute!!! Sorry to hear of the rough times you have had with your LO. Sure, there is people 'worse off', but it doesn't mean you don't have the right to seek support, grieve, and share your feelings. I know that my daughter's autism is 'not as bad' as others, but this is the worst thing we have gone through together, honestly. And, it doesn't go away. So, welcome.

 

[Marleysgirl]

You mention a "blue file", and Andrew's audiology appointment letter told us to bring his blue file ... We don't have a blue file? We don't have anything that contains a summary of his care needs. I'm going to have to ask his pre-schools advisor about that, I think.

 

[shelley22]

I havent actually got a blue file yet either, im actually looking forward to getting it and being able to read his notes.

Thanks JASMAK he is indeed cute but then again im bias! And thanks midnight fairy, im definitely going to try! x

 

[BabyBoo36]

It's good you've been referred to the child development centre, as they will keep a close eye on him.

The "wait and see" is the hardest part, I think. We were told at our 20 week scan that Freya has spina bifida. Although our 2 consultants were fantastic (fetal med specialist and her neurosurgeon) we frequently heard "We think this is how she'll be affected, but wait and see..... It's really hard. Now she's here, she's exceeded most expectations (apart from her fantastic neurosurgeon's who was always positive she'd be OK), we're again on the "wait and see" merry go round for whether her bowels/bladder will be affected, and in all likelihood, we could be on that ride until we start trying to potty train......

It's hard, but he's beautiful! xx

 

[Novabomb]

Hi Shelly22 don't be hard on your self as mothers we never want to see our lo going through a hard times as mothers its our job to kiss the ouchies and make it all better. So when our lo are sick and we are not able to just make it better it breaks our heart... My first lo when she was born she had a infection and had to spend 7 days in the ICU I had to go home with out her. My 2nd lo he was born healthy but when he was about 6 moths we noticed he was not meeting his milestones so he had to start physical therapy and speech he sat up for the first time at 13 months and took his first steps at 18 months he is now 8 and still in speech and is about a 18 month delay. I just had my 3rd baby and I find my self just sitting and looking and watching his every move to make sure he is hitting his milestones. I will keep you and your lo in my prays and I hope that everything starts to go up hill for you soon

 

[shelley22]

Thank you for all your kind words, it means a lot to know that other people feel the same way and also offer their words of advice

 

[lisa35]