Starbaby's op has been rescheduled for 6th January - so that means a cast-less Christmas! It also means he won't be into BnBs until he's around 11 months at the earliest, but hey ho, I've accepted that.
He'll be 9.5 months when he has his op and goes back into casts... he's getting more and more mobile, so I wonder how having one leg held rigid will affect him. He's taken most things in his stride so far, so hopefully it won't affect him too much. I guess I'm most worried about going into BnBs... I was fine with it when we thought it was imminent at 5 months old... but it's a different kettle of fish when your child is nearing their 1st birthday and having them for the very first time. I desperately hope he doesn't struggle too much having his legs restricted. However, I can't help feeling sad about it... he has so many things to overcome physically as it is, due to his muscle condition, so adding BnBs into the mix is rather different than for most babies with talipes. All we can do it wait and see.
Starbaby is doing really well, overall. He's responding brilliantly to our physio exercises and if I put him into an almost-crawling position (kneeling down, leaning forward onto his hands) he can actually support himself with his hands for a brief time! This is <i>amazing</i>, as his hands and arms, particularly on his left side, are so much weaker than your average child. I am SO proud of him.
Thursday, 28 November 2013
Thursday, 21 November 2013
Another Delay
I guess I shouldn't be surprised, really... Starbaby's talipes journey has been far from smooth!
He's been a very healthy little guy since getting home from NICU at a week old... a very brief tummy bug (which everyone in the family shared) and a cold a month or two ago. But this week he's gone down with a stonker of a viral infecion, with an awful cough and difficulties breathing. So the hospital have had to postpone his op, which was due to be on Monday 25th. It's frustrating that he's got poorly just at this point, but postponing the op is totally the right thing to do - I don't want any risks taken with my precious boy.
He has been cast free for 8 weeks now, and the earliest his op will be rescheduled is 3 weeks from now, when he'll be nearly 9 months old. After it will follow several weeks of casts, then he'll go into BnBs (finally), probably at around 11 months old. It's so, so frustrating to have had so many issues... most babies do the '3 months full time' period between the ages of about 2/3 and 5/6 months, so that once they're starting to get mobile, they are only wearing them at night. Starbaby will be close to 1 before he even gets into BnBs at all! He obviously has other issues which impact on his mobility (mainly his weak arm/hand muscles) but even so, he is rolling around the room like a pro and getting closer to a sort of of wonky commando crawling. I do worry about how he'll cope, going into BnBs at such a late age... but at the same time, I feel pretty sure he'll amaze me with how he takes it in his stride, as he generally seems to.
He's really quite poorly at the moment... struggling a fair bit with breathing, although he's OK if he's calm. Thank goodness for breastfeeding... last night he was getting upset and that was making him cough then he was really struggling to breathe... I managed to get him to feed and that calmed him instantly.
He's been very floppy since getting poorly on Sunday night... it's a little scary to see such regression in his muscle ability, but I am 99% sure it is related to being under the weather, so should only be temporary. It's not much fun, though... some muscular conditions are progressive so at some point there is a regression in the muscles' abilities... I hope that never happens for my Starbaby but I know it's a possibility. He's been struggling to sit upright (even with support), despite having been sitting for nearly 2 months now, and he's not been able to hold onto things properly, even with his 'good' hand.
Hopefully he'll be better soon. For now, it's lots of feeding, mummy snuggles and distraction.
He's been a very healthy little guy since getting home from NICU at a week old... a very brief tummy bug (which everyone in the family shared) and a cold a month or two ago. But this week he's gone down with a stonker of a viral infecion, with an awful cough and difficulties breathing. So the hospital have had to postpone his op, which was due to be on Monday 25th. It's frustrating that he's got poorly just at this point, but postponing the op is totally the right thing to do - I don't want any risks taken with my precious boy.
He has been cast free for 8 weeks now, and the earliest his op will be rescheduled is 3 weeks from now, when he'll be nearly 9 months old. After it will follow several weeks of casts, then he'll go into BnBs (finally), probably at around 11 months old. It's so, so frustrating to have had so many issues... most babies do the '3 months full time' period between the ages of about 2/3 and 5/6 months, so that once they're starting to get mobile, they are only wearing them at night. Starbaby will be close to 1 before he even gets into BnBs at all! He obviously has other issues which impact on his mobility (mainly his weak arm/hand muscles) but even so, he is rolling around the room like a pro and getting closer to a sort of of wonky commando crawling. I do worry about how he'll cope, going into BnBs at such a late age... but at the same time, I feel pretty sure he'll amaze me with how he takes it in his stride, as he generally seems to.
He's really quite poorly at the moment... struggling a fair bit with breathing, although he's OK if he's calm. Thank goodness for breastfeeding... last night he was getting upset and that was making him cough then he was really struggling to breathe... I managed to get him to feed and that calmed him instantly.
He's been very floppy since getting poorly on Sunday night... it's a little scary to see such regression in his muscle ability, but I am 99% sure it is related to being under the weather, so should only be temporary. It's not much fun, though... some muscular conditions are progressive so at some point there is a regression in the muscles' abilities... I hope that never happens for my Starbaby but I know it's a possibility. He's been struggling to sit upright (even with support), despite having been sitting for nearly 2 months now, and he's not been able to hold onto things properly, even with his 'good' hand.
Hopefully he'll be better soon. For now, it's lots of feeding, mummy snuggles and distraction.
Wednesday, 6 November 2013
19 days...
... left until Starbaby has his second tendon op (along with a bit of 'tweaking' inside, apparently). We are absolutely loving having him cast-free, and I'm glad to say that even though when we were in the middle of his 16 weeks of casts it didn't feel much fun, the memory is very quickly fading into the past and it definitely hasn't affected Starbaby long-term - that's the main thing.
He's doing really, really well. His hands and arms are continuing to gradually improve, and I'd estimate that he currently has about 50-60% use of his right hand and 10% on his left - it may not sound much, but it's a lot more than he did a few months ago. He is getting better at picking up some food with his right hand, and uses his left hand a lot to 'brace' things against and support the work of his right hand. His arms are still generally quite weak but it isn't affecting him too much. We have some physio exercises to work on arm strength so that crawling is a possibility in the future, although I think that is still a while off. He rolls both ways like a pro, though.
Today Starbaby had his first proper blood test - he had 40-50, maybe more, heel prick blood tests when he was in NICU, but he'd never had a 'needle' one until this morning. I requested some numbing cream last time we were at the hospital, which although he had a bit of a reaction to it, meant he felt no pain and that made it a much better experience for both of us. He wasn't too impressed at having his arm held still, but I breastfeed him throughout (well, he popped on and off to see what was going on!) so that was a good distraction. It was testing his level of creatine kinase - if the result is high then it means it's likely he does have a muscular condition like muscular dystrophy. I'm expecting it to be high as he does clearly have something going on with his muscles, and if it is it'll mean we're one step closer to a diagnosis and the future seeming a little clearer.
He's doing really, really well. His hands and arms are continuing to gradually improve, and I'd estimate that he currently has about 50-60% use of his right hand and 10% on his left - it may not sound much, but it's a lot more than he did a few months ago. He is getting better at picking up some food with his right hand, and uses his left hand a lot to 'brace' things against and support the work of his right hand. His arms are still generally quite weak but it isn't affecting him too much. We have some physio exercises to work on arm strength so that crawling is a possibility in the future, although I think that is still a while off. He rolls both ways like a pro, though.
Today Starbaby had his first proper blood test - he had 40-50, maybe more, heel prick blood tests when he was in NICU, but he'd never had a 'needle' one until this morning. I requested some numbing cream last time we were at the hospital, which although he had a bit of a reaction to it, meant he felt no pain and that made it a much better experience for both of us. He wasn't too impressed at having his arm held still, but I breastfeed him throughout (well, he popped on and off to see what was going on!) so that was a good distraction. It was testing his level of creatine kinase - if the result is high then it means it's likely he does have a muscular condition like muscular dystrophy. I'm expecting it to be high as he does clearly have something going on with his muscles, and if it is it'll mean we're one step closer to a diagnosis and the future seeming a little clearer.
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