feelingbitbetter and others with 'singlehanded' babies

[madmouse]

get a size two mini footbal, Nathan has discovered that he needs two hands to get it anywhere near his mouth, result

dh needed it for an assembly and bought it for £3 from Tesco, it is bright red and a bit glittery.

Nathan can also be persuaded to roll after it on the floor with a bit of help

Wonderful news Madmouse! He seems to be doing so very well lately.
Dad Gabe will be having a football very soon, I can assure you. Trouble is, he is still quite happy to look at it, rather than want to touch it (we have to force encourage him to do this)

It is something we've been thinking about for a while now, as he will use his right hand, but only to get something to his left hand or get his left hand closer. His right arm is as strong as his left so we want to encourage it. A £3 ball sounds fine.
Physio is coming again on MOnday, I'll let you know if she comes up with any good ideas

How about 'no-handed' kids? How can one get a child to feel or use their hands?

oh need more coffee if anyone would know the answer to that it would be you, you must have tried everything by now and should be giving lessons.

btw missing the pics of your dcs!

its under the other profiel. I keep hoping there's someone somewhere who knows a method that will help with severe CP.
She uses a headswitch as she has no hand function at all and its the hardest thing.

that is the b*gger thing with brain damage, no hope for a mirace cure...well I keep praying anyway.

you would think they should be able to invent something that creates artificial impulses from brain to hands. they are doing similar thing with eyes and false hands now don't they. I guess the problem is that in your case it is the brain not the hands that is the problem.

must say this, though it sounds trite, you and your dd are an inspiration for me. She has come so far depsite al limitations and you take setback after setback and keep fighting. how is your health atm?

you could also buy a dance baton with glitter inside and preferably shiny tassels or spheres on the end from the pound shop or toys r us. even babies who are 'singlehanded' can be encouraged to hold on (hand over hand if necessary) - brill for kids who have no idea that a midline exists - and sing 'the grand old duke of york) whilst doing up and down with arms etc... can be done lying flat on back if not sitting either... dd2 got the hang of it reasonably quickly - it was one of the only things she did two handed for years!

Just to update, gabe went to his very first birthday party yesterday and in his goody bag (apart from the sweets ) were some balloons.
We have had great success at trying to hold it (takes a while, he likes to have a good think about bringing his hands in) AND its light enough for him to bat away! So, lying on his left side, we have had an impromptu game of fetch as he uses his right arm to wildly bat at it. Yay! (Suspect I'm much more impressed with this new game than he is tho )

madmouse does your DS have a diagnosis of hemiplegia?

My dd2 has hemi, she is 22 months now, I'm always trying to think up two-handed activities for her. Strings of cheap beads worked for a while at around 8 months, 9 months. She was very motivated to explore them, and she had to hold them with her left hand so she could have a good feel with the right.

I've found lightly restraining her 'good' arm (just briefly) encourages her to use her weaker side, though she gets cross now she's older and shouts no no no at me.

Did Nathan have neonatal seizures too, MadMouse? My DD had them, quite badly, but nothing now since 3 days old. I've hardly come across anyone else with the same experience.

fbb - we had exactly the same with nathan, he got excited enough by a balloon to reach out for it with two hands.

I have this new game where I sit him on my lap, put some very enticing things in front of him on the table (feeding spoon, tv remote, drinking cup, pen, pack of wipes - who needs toys? ) and hold his left hand. It does not take him long to start attacking things with right hand, bit crude but it is getting there. Today to my astonishment he picked up his feeding spoon!! He crashlanded his hand on it, closed it and lifted it my boy

cocodrillo hi! Yes he did, they started at about 12 hours old manifesting in him going blue due to apneas and turning his head away. Before we knew it he was in NICU and it took almost 24 hours and 5 drugs to stop the fits. He came home at 3 weeks on a small dose of phenobarbital which they let him grow out of. It was such a scary time . But so far no fits here

we have had no diagnosis for cp yet, but they found out about brain damage on MRI/CT when he was 5 days old and so paed kept an eye out for his muscle tone and he started fisting and tucking away his right arm, so we ahve started physio. Otherwise he seems more or less on track, sitting for short periods, keen to stand but right arm too weak to pull up, so he pushes himself up from his haunches, occasional desperate attempts to crawl but again that right arm.

How was your dd at birth? Nathan was very good despite a horrific 3.5 day labour, induction and forceps (apgars 9, 10, 10) so we spent 12 blissfully unaware hours on the ward still not sure that is a blessing or a curse.

His head is v small but so is mine (wear a kids bike helmet!), he is finally slowly forming a curve to the back of his head (mine is also quite flat though) and my main worry is the risk of developing epilepsy.

he is our little marvel though

sorry for the ramble...

should say paed feels higher tone in all limbs, physio only on the right. seeing that he is rpadly developing fine motor skills on the left I think/hope/pray that physio is right.

Don't apologize for rambling, it's interesting to hear how he's doing and to hear your experience - Nathan sounds like he's doing great.

I worry about epilepsy too.

DD was fine at birth, agpar of 9 I think, but a midwife on the PN ward noticed she was twitching about 8 hrs after birth. Within 16 hrs of birth she was ventilated and full of drugs in NICU. Then SCBU after 10 days. Dishcharged on phenobarb at 3 wks old.

Had an MRI at 9 days old, showed a big bleed on the right. She's fine now.

Well, not fine, but she started walking at 20 months (a bit lurchy, and wears piedros/
a splint sometimes). Her leg's worse than her arm, her arm improved a lot over the past year - she crawled, which helped. She had always had a small head, on the 0.4% centile at one point, but her cognition seems normal, and she's talking.

Sometimes thinking back I can hardly believe what we lived through.

oh ,she came off the pheno at 6 months btw.

Well, physio says its fine to restrain the strong arm, and we are encouraged to lay Gabe on his strong side for short periods, to encourage the use of his strong, but much much less favoured side. It seems to work OK as long as we keep it short - he will wriggle that arm out after about 5 mins. We also Swaddle his left arm, leaving only his right free to hit play with his playgym toys. Again, little houdini will soon escape.
He is particularly interested in noisy/squeaky toys (even tho he can't squeak them himself) so we make sure we squeak them on his right side, but this isn't very successful as he uses his right arm to steady himself as he pulls the left one over, or gives up and laughs. Grrrr!
He managed to pull his sock of with his right hand today during his stretches, so it looks like we are all doing the right things

Interesting madmouse re: difference in opinion in tone. Our physio is much less concerned with his tone than his Doctors, though they all agree that it has massively improved. Arms now the biggest problem.
I put it down to the fact that the physio see's him for an hour in our home, but the Drs only see him in hospital for 20 mins afetr we've been kept waiting in the zoo like waiting room. I'm sure they'd see an increase in my tone too, its so bloody stressful there. I listen to the physio, she knows him best.

fbb same here. when we arrive at hospital he is first undressed, weighed and measured (why? have hv for that!) which he hates, then we have to wait and then there is the consultation which can take forever, but she only has a quick feel.

so excited to hear how Gabe is coming on! Can you put some more recent pics up?

funny how they have to give you a worst case scenario and so often the babies surprise them , they were honest with us and said that only time and Nathan would tell.

I posted on here in a panic and experienced people like NMC and 2shoes posted sayin not to panic it would probably not be as bad. and indeed, Nathan's visual cortex was most badly damaged and they warned us that he would likely be blind - but actually he sees very well, indeed consultant said he was 'unusually visually alert for his age' and said 'don't know how he has fixed it but he has' (visual cortex is hard to fix).

God answers prayers, and there were millions of those.

cocodrillo how lovely to meet someone with such a similar experience. the only thing substantially different is the cause of the brain damage, in Nathan is seem to be blood clots due to an infammatory response in labour.

So annoying! Gabe doesn't mind being dressed, but undressed! And twice usually as th Dr usually does it too. Have learnt a lot since 1st appointment when we went with vest, T-shirt and dungarees Now only a babygrow. i bought some that fasten up the back so they don't look too pyjama-ish.
We've also been told to expect cortical blindness. Test to be done in January . Wish it was this year so we could start new year afresh. I honestly believe that he can see. There is something clearly very wrong, I know, but I am certain he can see me.

Will defo upload some new pics so you can see how fat he's getting!
He's very vocal now and has a full on giggle, it's lovely . Still refusing to turn over tho me and DP caught him turning on to his side about 2 weeks ago so I'm sure he just waits till we are out of the room. The little devil.

he started smiling quite early didn' he? Nathan did at 3.5 weeks and that was an early sign. he also tracked at 6 weeks and made love to his cot mobile, which as a sunflower face looking down, so cute. we believed very early on that he saw and I really hope it is the same for you.

new piccies up!
he seems able to look at the camera, if nothing else!
Gabe doesn't track at all, not even me! . He will look at me, follow me for a bit, then it's like he almost gets bored - like, she was there, now she's gone??? ah, whatever! Same with toys. Can get a good focus on favourites, though it does take a while sometimes - he'll followfor a bit, then think, can't be bothered now and gets a bit vague again. He loves light and even more, the reflection of light. He will look at light shining on glass or silver, rather than at the actual light. He always looked at where the TV cast its light, rather than at the TV BUT he has started to look at the screen now, especially when we put Tigger and friends, or Top Gear on.
Gabe never had a cot mobile, but he has a cot book (I'll upload a pic of that now) and he reaches out to touch it. He must be seeing something, question is, what? The fact that he can see anything has good to be good. Am focussing on that. Give me 2 mins 2 upload the adorable one in his new sleeping bag xx

aaawww what a beauty...

dd2 had neonatal szs too and was loaded with pheno. we've had no szs since (discharged from scbu at 5 weeks) and the neuro says her most recent mri doesn't show damage in the area mostly affected when epilepsy is an ongoing concern, so we might be lucky .
dd2 was dx spastic quad intially and was v tight (boxer pose with hands wedged under chin, thumbs in palm) but is now mostly low tone/ athetoid, so tone can change enormously as they get bigger. she didn't smile for months and months and we thought she wasn't going to...
agree with madnouse - we've been told lots of things, and dd2 has proved them all wrong - you really do just have to wait and see xx