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A very proud mummy today :)

(17 Posts)
shaz298 Thu 13-Oct-11 22:20:29

DS drank at least 100ml of water in the space of 10 minutes today using his honeybear bottle I am so proud of him. Not bad for a little man who took NOTHING orally until about 7 weeks ago!

We were talking about him trying to drink some more and trying to have bigger mouthfuls(he's been averaging 20mls per day @ 1ml per drink, which is not a lot but more than he ever managed before). In the car on way back from hospital appointment I could hear lots of slurping/burping. Told him he didn't need to do it all at once but he replied,' but I wanted to do a surprise for you Mummy. Finished!' Of course we went straight out and bought a new toy which of course he has no need!!

I am not entirely sure what is going on with my little man but I'm completely convinced that BD has had a big impact. All of his SPD issues seem to be less heightened now

On a little sad note. The appt at RHSC was with the cleft team, post op review. All is well and he's doing great and they are happy with surgery but he will most likely need to have more. The sad bit is that it seems that a fair bit of his speech difficulty is A-typical (not unusual for Luuk to be A-typical) for kids with clefts and they now think he has a developmental speech delay . Seeing SALTS next week so will find out a bit more. This is the first time there has been a medical indication of a congnitive delay. I know it's not a disaster and doesn't change him in any way, just worried that my biggy fears will start to take form. I have always said that his early experience and very low O2 levels for 4 weeks had to have impacted somewhere and until now it hasn't really been apparent. I suppose I'm a bit aprehensive as we were told that due to all of his other abnormalities, his brain should actually be, and I quote the geneticist here, 'mush'. Have always been aware that he may develop slowly ( hasn't yetH, or that he may develop until a certain age and then slow down, or may even regress, but although I have been aware, not sure how prepared I actually am. He does have lots of quirks and I love him more than life itself. We will continue to nurture and cherish him to be the best he can be. Just a shame that this may be rearing it's head, just when his physical health is on the up and up.........

coff33pot Thu 13-Oct-11 22:34:12

I dont know about or have had experience with a cleft palate but sorry you are having such a aprehensive time of it. But look on the good side his brain obviously isnt mush and salt will step in to help with the speech delay which is great. If his SPD issues are milder that will help him concentrate on learning other things too.

And a big WHEY HEY! for the 100ml drink! Well done little man grin

shaz298 Thu 13-Oct-11 22:51:18

Thank you. Bit of background. DS is one very unique little man, undiagnosed, organs all over the place ( not reversed), extra bits, bits missing and until recently spent most of his time in hospital, lots of little quirks and think he probably has Aspergers or ADHD ( only just starting to have his behaviours checked out). I probably just haven't had much time before now to actually worry about his congitive development..........we were too busy keeping him alive. Now that he is really very well in himself ( inspite of feeding/mobility issues/quirky behaviours) I suppose his health just feels a bit vulnerable....... xx

PipinJo Thu 13-Oct-11 22:59:12

Message withdrawn at poster's request.

coff33pot Thu 13-Oct-11 23:00:32

Well he sounds to me not only a unique little man but a determined little fighter smile With a very caring mum too x

2011RWC Thu 13-Oct-11 23:05:53

Brilliant news about the drinking Shaz, I'm sure you're delighted'

And also sorry to hear that it's such an uncertain time for you all, the not knowing is hateful and makes it so difficult to prepare yourself. As you try to focus on the positive the worst case scenarios always manage to rear their ugly heads!

Have you heard anything from DDD yet?

shaz298 Thu 13-Oct-11 23:28:03

2011RWC: Nope nothing from DDD yet. You? With Luuk it always seems to be the case of .......we've fixed this but but now this bit's not working as it should!!

Pippinjo: No idea what the problem is but didn't know anything about oxygen therapy. Can that help 6 years later?? Will go and google smile

PipinJo Thu 13-Oct-11 23:34:39

Message withdrawn at poster's request.

shaz298 Thu 13-Oct-11 23:42:53

Pipinjo ( sorry for spelling you name wrong last time). Have just done a quick google and HBOT looks very interesting. Not sure DS would be willing to stay in a chamber, but if we found someone who was used to working with kids i'm sure it would help.

DO you do it privately or NHS?

Am seriously going to check out what's around. Must be worth a go. Will of course check with the docs 1st as he does have heart issues. xx

shaz298 Thu 13-Oct-11 23:55:45

Have ust sent a message to 'abreathforlife'. Thanks for this. xx

2011RWC Fri 14-Oct-11 07:25:08

I work with a girl who has oxygen therapy through the NHS, she has MS - she says it of very beneficial for her.

We're not even signed up to DDD yet - the consent forms were put in the post yesterday (apparently).

It sounds like an uphill battle for Luuk but despite everything it also sounds like he's beating the odds and doing amazingly well.

TheNinjaGooseIsOnAMission Fri 14-Oct-11 08:17:39

fab news on the drinking shaz smile Oxygen therapy sounds interesting, don't you just love mn!

shaz298 Fri 14-Oct-11 08:25:24

Sure do!!

purplemurple Fri 14-Oct-11 09:33:36

Great news, bless him ' but I wanted to do a surprise for you Mummy. Finished!' thats lovely smile

Dawndonna Fri 14-Oct-11 10:34:12

He sounds fabulous, I'm pleased he managed his surprise for mum and I hope his toy was a really good one!

starfishmummy Fri 14-Oct-11 11:17:04

Brilliant news on the drinking. grin

StarlightMcKenzie Fri 14-Oct-11 12:17:54

Brilliant grin

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