It has been 17 weeks since we first walked the hospital corridor to life in spica. On Monday at 7.30 we will be on the ward again but this time have the damned thing removed. The contraption that has taken away Erin’s independence, mobility and freedom since October will be be sawn off and those (now skinny) little legs will be free once more.
Its a new stage for us, I have been reading lots on how Erin is expected to react to this new milestone. It seems to vary from immediately throwing up due to the shock to wanting it put back on or trying to stand up straight away. I am unsure as to whether she will be put into a brace or not but either way I know that it will probably take weeks before she can walk again. And it is here that my major gah comes in. Erin is being seen 8 weeks after the cast removal and it will then be decided when to book her in for the next operation which is expected to be in May sometime. However I am frantic with worry that this op will be pushed back and before we know it September and the classroom bell will be ringing for me and yet the treatment will not have finished.
Erin is my priority but I have a job and bills and I just don’t think we can afford for me to be off any longer than September. It has left me very stressed this week and in a strop with everyone. Hence I have rung the health visitors asking when they are planning to do Erin’s two year check, yes Erin was two back in November. These are the same health visitors who haven’t been in contact with us atall over the past 24 weeks since diagnosis. Which I think is a disgrace. Health visitors should be there to support young families, where has Erin and my support been then?
I am already planning what we can do with our new found freedom. I have already arranged a swimming lesson and hope that Erin remembers how she swam and also how much pleasure it brought her. I may be foolish or optimistic I don’t know yet but I do plan to make the most of this respite even though I am a quivering wreck on the inside about what is still to come.
Erin will have more treatment that is inevitable due to the late diagnosis I just hope that the next stage starts soon and then Erin can get on with being an average toddler as so far we have been anything but average.
8 Responses
Hope it all works out for you honey! It will be wonderful for Erin to have her cast off! Health visitors are useless! Maxwell hasn’t had his 1 yr check yet and he’s now over 18 months! No contact since he was 4 weeks old! Totally disgraceful that you haven’t had any support from them!
Hugs xxx
It makes me mad, what is their job now? they dont visit!
I think swimming will be a great way to help her build up the muscles in her legs again. I would be writing to those heath visitors
Oh they have already had one letter, another on the way!! I can’t wait to get in the pool with her. x
Hope it all goes ok Em. On the subject of 2 year checks I had a letter when Maddy turned 2 to inform me that these checks were no longer done routinely (another govt. cut I suppose??) and to ‘talk to a Health Visitor if I had any concerns’. As a result neither of mine had a 2 year check but other people I speak to seem to have had them done with their little ones recently. I don’t think a HV saw Maddy past the age of 12 months and Sophie at about 6 months when I gave up dragging her to the Community Centre to be weighed and ignored by all the people working there. In general I feel the whole input I had from Health Visitors was pretty non-existent – clearly highlighted in your case by no-one picking up poor Erin’s hip problem. Sending huge love your way – really must try and meet up when it fits in with you. xxx
Its so awful, no wonder children get missed.
The only time I normally see my health visitor is when she bowls up in our office, usually to talk about one of my clients. She actually did do a 2yr check on Squeaky, but I suspect that’s only because she hasn’t seen her since the 12mth jabs. I work with some great HV’s, but there’s a lot of poor ones out there too.
I do truely actually blame a system of cuts and cutbacks rather than indiiduals, bloody coalitian government!