A mother's instinct

It makes me so sad when my baby girl is afraid of noises but I can't comfort her with a cuddle because she doesn't want to be touched :(

On the right path

It's been a while! We've been busy with life - lots of hospital appointments for L, sorting things, making plans and the most important stuff like playing :)

There's good news and not so good news.

I'll start with the latter - unfortunately L lost weight at her last weigh-in. Not a lot, thank goodness, but it still wasn't what we were hoping for. At just over 3 1/2 years old she weighs less than the average 22 month old.

But the good news is that we now have an AMAZING new Health Visitor who is being so supportive and proactive - I can't tell you how refreshing it is to see someone who actually gets on and does things! We now have referrals in to the Community Paediatrician and the Educational Psychologist for her CAMHS/SCAT assessments.

L also had her first play therapy session with the Speech and Language Therapist on Friday. It went well and I really hope it'll help her with her tactile and oral sensitivities. The S&L Therapist has also done a referral to an OT to work with all her other sensory issues.

I know we still have a long way to go but right now I'm feeling more positive that we're, at least, on the right path.

What's in a name?

So does it really matter exactly what is wrong with our daughter? To have a name for what is going on? To have a diagnosis?

I've been thinking a lot about this lately as the health professionals have thrown around several different suggestions ranging from bowel problems to reflux to Autism to Sensory Prosessing Disorder.

And whilst no parent wants there to be anything at all wrong with their child when there is something obviously wrong it somehow becomes important to know exactly what, for many different reasons.

Firstly, it stops the worry of could it be this, could it be that? Finally you know. You know what you're facing and what you're dealing with. There's no more endless nights lying awake wondering what on earth is happening or why exactly your child won't eat or why they're so afraid of so many things. Of course, once you have a diagnosis you are bombarded with a whole host of new thoughts and questions but at least they're focused and you no longer feel like you're wondering aimlessly.

Secondly, you now know where to turn for information and support. You're not trailing the Internet and several different organisations who support all those 'possibilities' - you can focus on what you know is happening and concentrate on learning relevant stuff that is going to be useful on your journey.

It stops all the endless discussions with others asking what is wrong and offering their ideas and suggestions. Most of the time people mean well but sometimes it can become tiring people offering their opinion - yes, I've thought of that, yes, we've tried that, no, that's not going to help...but most of the time I just smile sweetly and say 'that's a good ideas, thanks'. It's just easier that way. Once you know what's happening you can share that with people you choose to. No more 'do they know what's wrong yet?'.

And most importantly it means you can get the right help. The treatment and support that is going to make the biggest difference and help the most. For it doesn't matter what the name of what is wrong is, but it does matter that the name is the right one. Without a correct diagnosis how can you access the right treatment? How do you know how to fix something if you don't know what you're trying to fix?

And all I want, desperately, is to fix things - to make L better and help her to enjoy life and get the most out of it that she can.

So yes, to me it does matter exactly what is wrong with our daughter.

Progress!

After a difficult few days (think meltdowns over the noise of planes and helicopters, music being to loud and meltdown after meltdown when having a friend over, not to mention two tumbles down the stairs) and feeling like we'll never have a positive appointment with a health professional I'm actually feeling pretty good after L's first appointment with the speech and language therapist (not strictly her first - she saw her at 18 months old due to serious and repeated choking episodes).

It looks like we might be getting closer to figuring things out and hopefully then we'll know what to do and how to help L. We're going back next week to start some 'play therapy' to try and desensitise her to textures of food and the extreme response she has to touch /things on her skin. They'll start off slowly with things on her hands (I think she'll be fine with this as we do a LOT of messy play at home, which she enjoys) and then gradually move up her arms, to her shoulders, up her neck and onto her cheeks. Then hopefully we'll be able to get her to accept new textures inside her mouth and then hopefully new foods.

Of course at this stage we're still not entirely sure exactly why she doesn't like eating - it could be the texture of food, the taste or even temperature. Or it may be painful for L or not a pleasant experience to eat.

We don't have all the answers yet but as the S & L therapist said today, it's obvious that she has sensory issues from head to toe. We just need to figure out if there's another reason for this (this is where the CAMHS assessment will come in) or whether it's a standalone sensory disorder.

Either way I feel like, at last, we're moving forward - someone is DOING SOMETHING and not just waiting for someone else to make a decision.

One of those days

I'm finding it hard to stay positive today. Not just about L's problems but about everything that's happening in our lives right now.

Normally I'm pretty good in keeping faith and believing that everything happens for a reason but some days it feels like everything is too much.

Today is one of those days.

Needing to escape

I promised myself I wouldn't feel like this but today I can't seem to help it. I want to scream at people for moaning on about the smallest of things or for creating issues about things that really don't matter, that I really don't care about in the grand scheme of things.

There, I said it. It's selfish, it's horrible, but it's how I feel at this very moment in time.

What I wouldn't give to swap our problems right now for some of those things. And I'm not saying that our problems are the worst in the world, I know they're not and believe me I'm very thankful for everything that we do have right now.

Maybe I'm tired, maybe I won't feel so frustrated after a sleep.

But sometimes you just need to escape and stop listening to other people. Not for a long time, but for a little while.

A difficult weekend

It's been quite a tough weekend for L. Her symptoms have been heightened, she's been exhausted and found it really hard to cope with everything.

Everything hurt her - the slightest touch, putting her clothes on - noises irritated or worried her - what's that noise? is her most frequent question, which we hear repeatedly every day - she couldn't bear people looking at her, she couldn't cope with changes or unexpected events, she couldn't bear to take her clothes off once I managed to actually get them on her - despite it being very hot she refused to let me roll her leggings up - Saturday she barely ate, though fortunately today has been slightly better on that front, she didn't manage to walk very far on our trip to the 'princess castle' because she was too tired - fortunately we took our carrier with us so she could ride on my back but getting her into it can be a challenge in itself at times despite her not wanting to walk, she's been wobbly and weak.

And to top it off she fell down the stairs yesterday. Fortunately it wasn't too far and she is fine - a few bumps, but more shock than anything I think (for both of us!). She's a little scared (understandably) of the stairs now and keeps telling me where she got hurt.

So I think a quiet week is in order this week...some quiet play at home with just the family. She saw 2  friends last week and it really took it out of her.

Then back to see the Paediatrician on Friday to see where we go from here.