Asalam Alaikum all
Ramadhan Kareem and may Allah grant everyones fasts that they have kept with such patience and hardship...May Allah swt reward you all a million times and give you and your family and friends, health, happiness and jannah.
I just thought I would give you an update on my little baby. She is now nearly 7 months, she is recieving physio, speech therapy, cancer screenings, echocardiograms etc. We are still waiting for her vision test as with this syndrome they can have many issues with vision and we are not sure if Aleena does.
Her reflux seems to be calming down alhumdulillah, she TRIES to pick her head up but is still very behind. She has now learnt to roll over on her left on her own but not on the right. She does hold things but still hasn't a clue how to hold on long so does let go of it and hasn't yet learnt how to pick things up. But all in all, she smiles ALOT. We were down my parents for awhile and she seemed to be very chatty over there and would loudly babble 'aaahhhhhhhhhhhhhhhhhhhhhhhhhh' all day. However since we got back she has gone a little quiet. She hasn't picked up any other syllables but i practice with her as much as i can. Aleena is on 17 hours of feed, 14hrs at night and 3hrs in the day.
The good news is, she has started swallowing abit better....not as good but i manage to feed her about 10 little spoonfuls a day (which is very less). But she doesn't gag as much and seems to be enjoying it. It's such a bliss to sit with Aleena and feed her orally...it feels natural. Mothers out there....you are lucky to have children that eat orally, when you don't have that you realise how empty it feels without all the natural things in life. Make dua for Aleena. She is off for an operation on the 24th of this month for a gastrostomy...they will give her anasthetic which is a bit worrying as she is very little. She has been through too much. BUt because of everyones duas, alhumdulillah, Aleena seems to have a mild case of the syndrome but of course time will tell whether it will remain that way.
When we went for her echocardiogram 2months ago, she had an abnormal amount of fluid around her heart. On tuesday we are off for another one to see if that is still there.
However, alhumdulillah that we are coping and Allah SWT is great because Aleena is showing so much positivity...well slow progress but it all counts.
WSalam
