A whole new world

So this week we have started to properly look into adaptations.

I guess I should have opened my mind up a lot faster to the fact BBG would probably need things adapted for her. The specialists have been telling us for a while, we had a charity assessor come round to discuss a couple of adaptations but this week I have properly been looking into what we can get BBG.

We have asked for funding for a car seat, this is the normal car seat but instead of using the one we had for SB that was in the loft we are getting a 360 car seat (if the funding comes through), it just means on a bad day we can spin the car seat so that it faces the door to easily get her in and out of the car, it also has a lot of padding and can have BBG sitting rearward facing until she is 4ish (which to be honest is the way that is recommended for any child).

We have also asked for funding for a specialist bath seat, at the moment we have to be in the bath with BBG to have her bath safely, or have one of us holding her while the other washes her but with the specialist seat we can strap her securely into place, meaning even on her floppiest of days she will be fully supported in the bath. It will mean she can be in the bath with a little independence.

Then it got me thinking what other things we will need adaptations for. What other every day items do I take for granted. I realised we really need a specialised feeding chair. We have tried numerous high chairs and she won’t eat in any of them. We have to sit her laying down slightly elevated with her head on a cushion and slip the food in to her mouth. Although even then she still only takes a few spoonfuls at a time. I guess my hope is if she had a fully supported seat then she will feel secure enough to eat… I am not sure whether it will work anyway, I know hypotonia children generally find eating difficult. So I just don’t know but I have to find a better way then feeding in between my legs. Especially as she is getting bigger and won’t fit there forever.
I then looked round my house and thought we have a couple of steps up to the front door, if she carries on the way the doctors think then she will need at least handles on the wall if not a full ramp. This includes getting into the garden… will it be a ramp or just decking that will make it easier for her to get down to the grass level. From what I have read most hypotonia do learn to walk even if it is delayed. We have been told due to the different abnormalities that this may not happen… We still hope that isn’t the case but i need to prepare mentally.

I then looked at the fact that BBG still doesn’t push her arms or legs through her clothes. This is one thing she has never progressed in. They think it is where her reflexes are diminished that the part of the body that tells her to push through the sleeve doesn’t work properly. I then looked and saw that we can get changing tables that attach to the wall that fold away, sort of like giant nappy changers you have in toilets… I never even knew these existed. I don’t even know whether this would be suitable for when she is bigger.

Then I saw the different bowls and spoons and cups you can get, ones with suction, ones with high rimmed edges and some that are different shapes to help with holding. I guessed such things existed but to look at the different shapes and varieties blew my mind.

I know this only touches the surface, but I suddenly realised I am going to be plunged into a whole life of equipment I had not even thought of  or knew existed. A world that I have no friends to ask for help. No one that I know that can suggest to get this chair instead of that chair. It is all just a lot of research and a lot of trial and error I guess. It petrifies me.

However, it also gives me hope. There are adaptations for EVERYTHING. It gives me hope that BBG can have a ‘normal’ life, a life where she can have a job, her own house and family. It just will mean she needs adapted items… well if that means she can have an independent life then that is so amazing!

My journey is just at the beginning. My journey is still researching and learning. My journey is still mourning the loss of my perfect girl and realising my girl is still perfect but just needs extra help. My journey is learning to lean on friends and family but also to finding a new circle of friends who understand adaptations and can point me in the right direction.

I am not sure what the future holds but I know this is just the beginning. I have learnt more medical words in this last 10 months then I have done in my whole life. I have learnt of more charities and support groups then I could have known existed. I learnt a new level of tired. I learnt a new love my husband as he is my rock in a situation neither of us knew we would be in💕

Most of all I learnt that BBG is still BBG. She is still the baby I loved in my womb, she is still the baby I brought into the world, she is still the baby who smiles this incredible smile and most of all she is still BBG. If I can last test and test and test and see my baby being prodded and hurt then adaptations and getting my head around them are the least of my worries.

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