Monday, 29 June 2015

Finally,an update on my little monkeys! and a couple of new releases...

Warning! 
Potentially LONG post... if you don't have a spare half an hour, I'd come back later....

SO... where to start???
Those that used to be regular readers, will know that Dylan was born in 2012, with a craniofacial condition called hemifacial microsomia, sounds complicated, but really just means half of his face has certain less developed areas, mainly his ear and jaw... as part of the condition he is profoundly deaf in his left ear, and also has some nerve issues around the left side of his face which means he has limited lip movement on that side...
Anyway... I don't need to go into all the in's and outs of it all... you've either read it already in older posts, or you can have a scroll back down if you need filling in... 
I wanted to give you an update on how he's doing now...
So... he had seemed like he was doing amazingly well... hitting milestones ok... some at the later and of the scale, but pretty much on target... until around 18 months where it seemed like he just hit a standstill with speech... no new words, stopping using words he'd previously used etc... wasn't really listening to or understanding much of what we said, and was in his own little world most of the time!

I was finding it almost impossible to get any kind of communication from him, I just felt like I was talking AT him constantly and not getting anything back... 
We'd been seeing various specialists for various things here, there and everywhere... and we eventually got referrals for speech and language therapy... and then the chance to see if he was a candidate for a BAHA hearing aid, which is essentially a device that converts sound to vibrations and sits on the skull behind the ear, and in Dylans case 'sends' the sound to the other (working) side!
 ( its far more technical than that, but I hope that makes sense!)

Speech Therapy started in August, and he got a BAHA on a head band in September (eventually, if we decide to go ahead the device will be fixed to a little pin that will need to be surgically implanted behind his ear...not thinking about that!)

So... we finally got him to keep the band on (NIGHTMARE!!!) and we'd been following advice from the therapist, but Christmas came and went, and nothing much had changed... except for the fact that it was getting a bit easier to get his attention, and he would respond to his name after 2/3 attempts instead of about 50! 

One of the things that had been suggested, was trying some simple signs, which I'd been trying, but had almost given up on, because he wouldn't look at me doing them! so how could he take them in! 

THEN...breakthrough!! mid February he signed 'more' to me!! to ask for more juice!! 
all the time I'd been thinking he wasn't even noticing me do it... but somehow it had gone in!! 
And then he was watching Peppa Pig, and did a made up action/sign for rainbow!! which I had been inadvertently been doing ages before!!! 
Our Teacher of the deaf showed us a few more to try  and he got them quite quickly ( Well...with me drilling them into him at very opportunity...lol)... milk, biscuit, car, orange, same, bath...
He just seemed to picking them up so much easier than speech!! 
But the best thing? pretty soon after, his speech started coming on too!!... 
he started using 'b' sounds for the first time and said ball, and bye bye!!
and he's just been adding more and more since!
in the last week, he's used the 'p' sound for the first time and 'l' and 'ai' and 'ee'

Understanding has improved too... before March he couldn't point to eyes/ears/nose etc when asked... now he knows most body parts!
He couldn't point out objects when asked, and now he can.... when he wants to!
He knows and can say/sign some colours
Knows some letters and identifies them by using an associated word... so if he sees an A he'll say apple. U he says lella (umbrella!) 
Just yesterday he said four and eight!

There's still a long way to go, but it really feels like he's finally making progress now, and its the MOST amazing feeling!!

We are mid way through a basic sign language course too... which we hope will help so much!!

He truly is a little STAR and he's just not the same boy he was a few months ago!
he makes me proud every day!
especially when he calls me mumma!! ( which he also calls everybody else at the mo... but i'll overlook that:))

so... that's the long awaited update I promised ... and I thought you'd like to see a recent piccy...

here he is with our little princess Evie, who you last saw 18 months ago!!!
and who is the focus of the next chapter.....


So.... the reason I disappeared for so long after Evie was born, was because life got pretty tough for a while...
When Evie was 2 days old, she failed her newborn hearing screening... we were told not to worry, but they'd refer her for more tests...

at 4 weeks old we had her audiology appointment, where after LONG tests we were told she had a moderate loss affecting both ears!!!
we had a follow up appointment made to have aids fitted...
seriously...my world STOPPED!! and I just went into auto pilot... I carried on...because I had to... but honestly, I've never been such a mess!

so...we were geared up for going through EVERYTHING again that we'd been through with Dylan...

We went back for the next appointment, and I wasn't good, I was convinced we were going to be told that her hearing was worse than they thought...
they redid some of the original tests, which took forever ( I think that days appointment was 3 hours!)
 and then we were left alone for a while while they looked over the results...

I will NEVER EVER get over what happened next...

The audiologist started by saying that she'd got some different results this time.
(crazy fast heart rate moment)
her hearing wasn't anywhere near as bad as they had previously thought!!!
I won't go into all the technical stuff about sensorineural versus conductive and decibel levels etc...
but we left that day with only ONE hearing aid, and the knowledge that even that one may only be a temporary measure!!
they now believed she had a borderline mild loss (close to normal) and a little bit of congestion making it a bit worse temporarily...

back we went a couple of months later....
they repeated the newborn hearing screening test that they'd done at birth....AND...she passed!!! 
so she no longer had to wear the aid!!
the borderline loss may still be there but all the congestion had cleared

as we stand now...we still have no definite answer, but at her last test they tested her overall hearing, and they got down to minimum levels, so we know at least one ear has normal hearing!!! which is just SO difficult to get your had round after the first appointment!!

They have been trying to get true results for individual ears, but she's a little monkey and won't tolerate the little ear plugs!!

so its just a waiting game... which is difficult, but worse case scenario is a borderline loss in one ear, which really will not affect her at all!! 

she's already speaking well, and can say about 30 words without prompting... (not including a swear word that she might have overheard mummy say.....shhhhhhhh!)
she's a proper girlie girl and loves dancing and shoes...lol!
if only she'd hurry up and grow some hair!!... can't wait to do plaits and pigtails!
On the pic you can't see any... but she does have a little tiny bit on top, and at the back she has a few curls...

so that's the lil tiddlers covered...


Callum is now 16!! can you believe it? he's just finished his GCSE'S, and is going on to do A-levels in September...
The little brainbox, has just received a letter saying he's receiving an Academic Excellence award for the 4th time!! We don't know where he gets it from...

He's also working part time now! he really is all growed up!!
he just needs to lose his teenage stroppyness now

If I added a photo, he'd kill me!

So to sum it all up... I have 3 amazing, beautiful, bright, cheeky, stroppy kids who make me swell with pride, and I wouldn't change my life for the world!
the end...lol!
...............................................................................................
Can you bear any more info?
warned you it would be a long one...

Did you see i'd re-opened the shop...

well, I've decided to stick with the name pollycraft after all...

and I've added a few new things recently....

 gregory

 Evie Twinkles - Happy Rain

 Evie Twinkles - Wish

 Jessie

pop over and have a looksie....

Blimey!! I've just looked at the time!!
I'd better call it a day I think...
I'm sure you've had enough by now anyway...

I'll make the next post shorter I promise!!

thanks so much for stopping by...
Paula
xxxxxxxxxxxxx

10 comments:

Creations by Shirl said...

Wow you sure shared a lot, I'm so happy that everything and the kiddies are doing so well. I hope in time they both recover fully. I could go on and on but I don't want to, I will swing by the shop and check out what you got going. Take care and my prayers are with you all.....

Ali said...

Wow!! no wonder you took a break thats a lot to go through - but you've come through the other side, hugs, and you've found time to produce some new images which are fab - hats off to you!!! xxx

Diane.W. said...

Hi Paula,it's lovely to know you are all ok.life can be tough,think we were put here to be tested sometimes!!! Beautiful children & good luck for the future to you all x

Pop's Cards said...

I really feel for you hun, I went through all of this with Sammie and thought my life and world was over, I never expected it to be the same with Teej but it was even worse with Teej, I got very annoyed and angry, upset I went through stages like grief, what he would never do and what I could try to help him do, we too learn basic sign but he spoke his first word at 5 and has never stopped, I felt all alone, no one I knew had kids like mine, the ones with kids seem to think they could catch what mine had so steeped away from us, I had people saying I must have done something bad in a past life, or they should be in a care home, one person said kids like mine are a drain on the system and should be out to sleep at birth...

I felt alone even with a house full of people I felt alone, I carried them so it must have some how been my fault they are like this so I punished my self...

All I can tell you is it will get better and easier and you will learn to go better, I wont say learn to cope as mums do anyway no matter what...

Teej turns 18 on Halloween and yesterday he buttered his first slice of toast :0) I was so happy its a little bit of independance as I am not always going to be here, he still cannot write his name or wash himself, and he will never get shoe laces but he is happy we make sure of that...

Sammie is 20, I know right scary, she has just had her back done she is still walking proving them wrong that she would have stopped by now, she struggles with shoe laces and getting washed and dressed but again we make sure she is happy and has everything she needs but she can make her won drink and sandwich so I know she will never starve...

If they offer you services please accept them, I went through a I don't need that phase thinking I was some kind of super women, I didn't want people in telling me how to bring up my kids, and really I did once I had been shown tricks to help it went so much easier, Teej had a toy rabbit that he snuggled and he would cry all the time I didn't know the sign for rabbit until she showed me, and he learned that one pretty fast, he couldn't use his hands still cannot but would nod once I signed it and that was the break through for us with him, he cried as he wanted his snuggly rabbit life got better then, but if felt bad as I had tried to do it alone for so long and I could have learned the sign sooner, if that makes sense...

God I waffled there didn't I you know me. anyway you know where I am if you need a chat, but do keep posting updates, your babies are both gorgeous ((((hugs)))) Pops x

Caroline Counsell said...

Lovely to hear from you again. Have missed you xx Caz

MelodyR aka Ry&MysMom said...

Paula I'm a fairly new follower.......as in I only discovered your blog through either a Cricut or a Silhouette message board u belonged to, just before you closed your store. I appreciate you sharing what has been going on with your life. Your kids and family are what matter most. Thank you! I haven't been crafting much these past 2 years or so. I look forward to seeing more of your creations - I just love them! Take care always!

Annie said...

big hugs - oh my you are so brave - love your designs and good to have you back. Annie xxx

cardmaking bird said...

What a wonderful update! He sounds like an amazing little boy and I'm so happy to hear he's coming along so well. They're both absolutely gorgeous too! You sound like a very proud mumma - and rightly so! It's great to have you back. Love and hugs, Marie xx

...just Barbara said...

It was so great to read your update. I could feel your pain, tears and joys! It sounds like things are starting to turn around for the better and I hope it continues that way. Anyway just wanted to say hi and let you know I was thinking of you. Hang in there. {Hugs}

Elaine Hughes said...

Hey Paula! I saw the news that you were back over on Barbara's blog! :) So happy to see you here and catch up with your news. Will be sneaking by for some digis soon!