Trisomy babies

Hi Shonna

we are ok thanks, just a little on the tired and emotional side.

Yes on Thursday night Lior stopped breathing, but fortunately after what felt like two minutes he came around. We rushed him to the ER and had him put on oxygen and meds to stimulate the breathing and open his airways. We spent 4 days in hospital - otherwise we are all good. How are you guys doing

Butterflies,

How r u doing lady?

I read your blog on Friday and i was in tears!!!!

How r u doing?

How is Lior, ann said he stopped breathing on Friday and was in hospital...

I hope u r well!

Keeping u and Lior and ur family in my thoughts and prayers!!!

Hi there Joybaby - Little Mikayla gave her parents a big scare - at one stage the doctors told them to start saying their goodbyes !!!!!! but I am happy to report she is much better - still a long way to go but recovering nicely.

Lior is doing well, we have our up days and our down days but fortunately more up than down. Since coming home from hospital he has been doing well, except for the odd day but otherwise all good.

Unfoturnately the diagnosis doesnt change with age, it gets a little scarier as he gets older cause that 18 month mark sticks in your mind no matter what - but we have faith and know that our little boy will be with us a lot longer than what the doctors predict.

Still havent heard anything from the other lady. Was hoping that she would get in contact

How is your little girl doing.

Butterflies I am praying for your friend's little girl.
I remember you telling me about her before.
They have been through so much but never forget that God is in control and our prayers are heard even if we cannot control the outcome.

Big hugs.
I really hope she will be okay!

How is Lior doing? Any changes, any progress, any news?
Do things get better with age or is it the same?

Hi Juno - sorry its taken a while to reply. Neither is great, but I would rather go for the constipation at least we can treat that and know he is still getting his nutrients and keeping his feeds in, with the runny tummy you have to worry about dehydration.

But in any event, Lior is doing well, has his moments, I am just worried about a little girl (Mikayla) in Durban who has the same syndrome and has also just turned one. She was admitted to hospital for Bronchial pnuemonia and was really not well. When I sms'd her mom yesterday she said she was doing better, but things took a turn for the worse today, her right lung has collapsed and her little heart is taking major strain. I am just asking everyone to keep her in their prayers, she really is a special little girl and has to come through this !!!!

Sounds like you've been through just about everything out there. Never heard of Perlagen - can't the paed advise? Although you probably know more than him/her by now..so is it easier treating constipation or runny stomach? Looks like that may be what you base yr decision on as to what formula to use. Good luck..

Hi Juno

Since he has been back from hospital on Monday he has been good, sleeping well and very lively. We are just battling with the formula at the moment, the doc changed it to Similac advanced HA but it seems to give him a runny tummy. With at least two or three of the feeds a day, we go through 4 or 5 nappies per feed. We tried the nan LF again from last night and now his stool are pretty close to being solid - which we know in a few days will lead to constipation - it is a no win for us, we just dont know what to do anymore. The nurse from the cleft pallet clinic suggested nan-perlagon but I dont know that formula and am too scared to try cause when I looked it up it says it says it is an acidified formula and not sure what this means. As is Lior tends to have a lot of acid in his body and I dont want to make this worse .....