I can't believe my lil plonkey is half a year already! This time 6 months ago, H was in SCBU and I was feeling rather
sore. Right now, we are all packed into our too small Honda civic on our way to Cornwall for a few days.
It's been a roller-coaster! Apart from the dodgy start that landed her in special care, all seemed well for the first probably 10 weeks? Then she kinda spaced out on us and stopped doing things she used to; smiling, looking etc, then came the nasty seizures, the diagnosis of severe epilepsy, the meds that are now as much a part of our routine as nappy changes, the counting of seizures, the return of smiles, the light that is seizure free days (some days). With all this, there have been too many appointments to even have a guess at, tons of reports and opinions and a couple of ambulances.
Today we had a couple more appointments come in the post. These ones i'd been waiting for; physio and koalas. I felt kinda choked this morning when they finally came; sad that I've wanted these appointments. Noone wants their child to have to have physio, nor belong to a special needs playgroup (koalas), but my acceptance of Hope's conditions and needs have led me to persue these options and ask for referrals. I know hope is delayed and is therefore entitled to physio, and I know that koalas will be good for both of us. I'm really looking forward to meeting some other mums with special needs children.
When sammy died, I felt compelled to seek out others who knew my pain, and through SANDS (stillbirth and neonatal death society) I have made some fabulous friends. Those people will remain my friends forever, but now I find myself looking for a new group of people; those who understand what it's like to be raising a child for whom the future is so ....?
So how's Hope doing now? Well, I am so chuft that the seizures are being kept at bay. About every other day is completely seiZure free, and on the other days she tends to have less than ten of which are mainly so mild they are barely noticable.
She finally seems to be sleeping a bit better at night now she's in her big girl cot. She's taken to solids really well, today she had breakfast of yogurt and fruit, then a big serving of sweet potato for dinner.
Developmentally? In the beggining I was obsessed; constantly comparing her
Progress with the 'norm', to start with, she was where she should have been, up till about 8 weeks, then we gradually said goodbye to more and more of the normal milestones. She smiles, she laughs, she looks at things-sometimes. Her head is still a bit wobbly. But her control is improving. She is aware of her hands- I think, though she isn't reaching for things on a regular enough basis to say it's anything more than luck/excitement. She makes so many noises and really shouts sometimes. I do believe she will speak! I swear she says 'mum' a lot when she's having a moan! Even auntie Mary heArd her say it yesterday.
But omg, she's sooooo beautiful, super cute, has a lil personality, makes us all so happy and proud to call her our own. Now that the seizures are better under control, she's definitely coming on more, obviously she's way behind, but hopefully we're back on the road to progress further. Obviously we hope she continues to make progress, But really, so long as she keeps smiling, That's enough for me.
We went tenpin bowling earlier. There's not much more to say really. Chris won, As always. Jordan came 2nd, as she always does, max came third, and I came last- as I always do. My sacrafice as max's mum to let him not be last-lol . But in all honestly, I do find the whole experience boring and pointless (apart from the fact the others enjoy it).
Excuse the messiness of this post, like I said, we r in car. I'm blogging from iPhone, but couldn't not blog on such a day as her half birthday
To those who follow, and who's blogs I follow, I will b following your blogs, but for some reason can't post comments on phone :0$
Wooo hoo, Cornwall here we come. 3 hours down, 1 more to go!
Sammy send us some sunshine :0) mummy's bought a present for your garden already
Ugh. Bad day.
4 days ago