PH Parents of 2013
Discussion
Obiwonkeyblokey said:
Thanks very much for your kind words and thoughts and I also wish you well with the adoption process.
Thankyou very much! I met the little girl on Monday - it was the most amazing moment and it's now going to be a very very hard 6 weeks wait until she comes home. Felt so wrong leaving without her I almost vomited. How's your little one doing now?BlackVanDyke said:
There's at least 1 PHer whose little boy survived a similarly severe injury and is now I think 4 or 5 and doing very nicely, enjoying school etc.
As you know B that's very much my situation.Obi if you want a chat at all feel free to drop me a line. My first son was the surviving twin and was born with cystic periventricular leucomalacia. He's very severely disabled and we have been through what can feel like hell.
Despite all that he is the most amazingly happy little man and he continues to shine.
Only recently he somehow improved his own hip joint displacement from over 50% to under 30% with no surgery, something his hip consultant simply cannot believe. It may seem all doom and gloom but you learn to see the positives.
I won't kid you, its going to be tough. Most nights I watch him sleep for a bit and just have such mixed emotions. I'm so proud of him and yet so sad for him at the same time.
Oh, and in keeping with the thread my other little man is doing just fine, starting to sleep at night a bit better. In fact he pretty much sleeps through which I'm happy with at 2 months :-)
Weight gain is spot on and hes developing well, its all a new learning curve for me.
A little concerned about his breathing while sleeping so keeping a very close eye there.
Congrats again on the adoption :-)
Weight gain is spot on and hes developing well, its all a new learning curve for me.
A little concerned about his breathing while sleeping so keeping a very close eye there.
Congrats again on the adoption :-)
Thanks SB, very kind.
For the time being we are focusing on feeding and getting him home, then we will take each day as it comes and see how the PVL ( as thats what its been diagnosed as) manifests itself. We've had lots of chats and are taking the approach that as time goes on his condition will materialise to us at a pace that we can adapt to it. the initial shock was terrible, but we now don't want to waste any energy on worrying about how bad his condition "might" be and we just purely focus on the here and now.
For the time being we are focusing on feeding and getting him home, then we will take each day as it comes and see how the PVL ( as thats what its been diagnosed as) manifests itself. We've had lots of chats and are taking the approach that as time goes on his condition will materialise to us at a pace that we can adapt to it. the initial shock was terrible, but we now don't want to waste any energy on worrying about how bad his condition "might" be and we just purely focus on the here and now.
SBDJ said:
BlackVanDyke said:
There's at least 1 PHer whose little boy survived a similarly severe injury and is now I think 4 or 5 and doing very nicely, enjoying school etc.
As you know B that's very much my situation.
Oscar and Senan 9 months old today. Sleep is overrated - but over all going well. We have had them to Ireland 4 times by plane since birth - regular travellers at this stage.
All I need is a bigger house and a drive of the Caterham - only out once since birth - and that was for an MoT.
All I need is a bigger house and a drive of the Caterham - only out once since birth - and that was for an MoT.
Obiwonkeyblokey, how's the tiddler doing?
Sophie has been home for 6 and a half weeks now, she's an absolutely amazing little girl. Her issues are simultaneously much worse and better than I was told - breathing/feeding/swallowing worse, understanding and communicating a LOT better. We've had brilliant support from the community children's nurses, these (mostly) ladies have been an incredible resource, I should think you'll be hooked up with them by now too but if you're not, your GP can sort it, they're worth their weight in gold.
Sophie has been home for 6 and a half weeks now, she's an absolutely amazing little girl. Her issues are simultaneously much worse and better than I was told - breathing/feeding/swallowing worse, understanding and communicating a LOT better. We've had brilliant support from the community children's nurses, these (mostly) ladies have been an incredible resource, I should think you'll be hooked up with them by now too but if you're not, your GP can sort it, they're worth their weight in gold.
Nice reading (and seeing) these updates from the 2013 gang! 
Matilda is now 14 months and a delight to be around, so funny, her personality and humour coming through more and more.
Made her a sandpit at the weekend, been saying "Uh uh, not in your mouth poppet" a lot as you might imagine!
p.s. not wishing to go off topic but is it ok to post up pics of our little 'uns or will we find them being used on a promo poster at Butlins?
Matilda is now 14 months and a delight to be around, so funny, her personality and humour coming through more and more.
Made her a sandpit at the weekend, been saying "Uh uh, not in your mouth poppet" a lot as you might imagine!
p.s. not wishing to go off topic but is it ok to post up pics of our little 'uns or will we find them being used on a promo poster at Butlins?
Pferdestarke said:
Alistair is 18 weeks. He's around 20 pounds
Wow, Emily is a tiddler in comparison at about 13.5 pounds at 20 weeks!Was sleeping well and has even been through the night 2 or 3 times, but has gone backwards a bit in recent weeks. No night is the same. Between 7.30pm and 7am sometimes she wakes up once, sometimes twice, Occasionally three times! Sometimes won't settle and keeps waking at the beginning of the night, or sometimes is fine but wakes up too early! Argh!
She seems to be doing something new every day at the moment - vocal sounds, rolling over, head control on her front, playing with toys - rattling, putting in mouth and exploring new textures.
The main frustration is that she isn't the most easygoing of babies to take out - won't nap for long unless in her own cot and gets easily overtired, and doesn't enjoy being kept in the pram or car seat for too long. You see other babies fast asleep in public places and WW3 wouldn't wake them - that is not our Em! She is getting better though (and reading some of the above posts I missed I don't have much to worry/moan about - I hope others are doing well).
Here's Molly showing off the fact she finally has teeth! Still working on the hair though. She'll be 11 months on Thursday :-)
She's crawling full speed and climbing on everything. Doing really well with her swimming too.
Hub - we are also slaves to her naps. Has to be at home, in the dark and silence. No idea how we'll manage when we go on holiday next month. Hopefully she'll be so knackered she'll zonk in the pushchair.
Finally started sleeping through (most nights) at about 10 months.
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