[Affa]

Originally Posted by PhDGirl

Thanks for updating us. I will keep your family in my duas iA. Try to stay strong

Thank you so much.

I was going out about 2 weeks ago in a cab and this driver asked me about Aleena. He told me that he has a neice who is 3.5 yrs old who looks like a 3 month old, she has a gastrostomy (a tube going through her stomach...which aleena is due to have in summer with an operation). They can't find what is wrong with her...how sad? The other sad part is, her mother passed away when she was about 2 yrs old in a fire.

May Allah protect every child, mother, father...ameen

[Salika]

Thanks for the update. Glad to hear she is smiling!

[fatima]

you, aleena, and the rest of your family are still in my duaas

[LEGALEAGLE]

She is in my dua's

[Spice]

Ah, subhanAllah. May Allah grant her shifa and make the entire process easier for her and all of you. ameen.

[iTz_NoT_Me_iTzZu]

You and your family are in my duas

[Whatyosayin]

Asalaamwalaikum

I was deeply saddened to hear about your daughter Aleena. Both of you are in my duas, and I pray that Allah swt makes your struggles easier for you and Aleena to handle. Your daughter is beautiful, masha'Allah! I can tell already she has a very sweet heart.

[socceroni67]

inna lillahi wa inna illahi raj'oon
may allah may cure her in no time
and my he let her have a good a healthy life

[khadeeja29]

affa, keeping you and your daughter in my duas reading all this just breaks my heart. i can relate to you in some ways. i also had a normal pregnancy, followed all the dos and don'ts of pregnancy, all looked well during routine testing.. so I also thought I would give birth to a healthy child. Everything was fine with the birth, took him home 2 days after the birth, he seemed well, etc. I get a call when he's two weeks old that he had an abnormal result on his newborn screening test. followup testing confirmed he had some thyroid abnormality (we're not sure what kind exactly, because he had a low T4 count and normal TSH count - TSH is supposed to be high in true hypothyroidism). so he's been on a daily med since that time, since thyroxine is critical for proper brain development in the first two years of life. he might have to be on this medication for life, but we're going to try and wean him off at 2 to see if it was just a transient condition. i hope he will be able to wean off the medication at 2, inshaAllah. I can't even imagine what you are going through. is Aleena receiving any early intervention services, like speech, physical, or occupational therapy? if you ever need to talk, you can PM me.

[Caramel_Candy]

iA khair will continue to make dua for you and your family

[jaani]

Alhamdullilah!

~j

[wheelworks]

Originally Posted by jaani

Alhamdullilah!

~j

Donchaknow

[dreamdeferred]

I will make dua for your daughter insha'Allah.............May God grant your daughter good health and make your trial easier.

[Affa]

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

[fatima]

alhamdulillah, thank you for the update!

youre all still in my duaas