[Ameerah]

Aww Affa , you're all in my du'as.

Be strong hun.

[annie_359]

In spite of the bad news being confirmed rmbr to say Alhumdulillah we live in a country where the illness has been identified and diagnosed..

Lots of love and duaa's,
Annie

[Jamroll]

I'm sorry to hear that, Affa. Ameen to all the du'as. May Allah give you and your family strength and sabr.

[YOUSUFofSD]

Ameen to the dua's, may allah protect you, your daugter and your family.

[zzze]

assalamu alaykum Affa

i hope u and your family are bearing up insha Allah. Dua is the believer's weapon, just have trust in Him and turn to Him always, esp in the night when u wake up for your baby. May Allah swt guide, protect and shower your family with His infinite Mercy, ameen

[sally]

dear affa,
my heart goes out to you and your family, especially your daughter. i'll remember you guys in my duas.. much love and let us know if ther's anything we can do for you...

[fatima]

sally took the words out of my mouth....ditto to everything she said.

we are all thinking of you and praying for Aleena and your whole family.

inshallah khair

[Spice]

Originally Posted by Affa

Asalam Alaikum all

Aleena's blood test results have come and she does have costellos syndrome. We are in pieces after hearing this news. Make dua for her pls.

Wsalam

ah, subhanAllah.
Dont know what to say. will continue making dua for her and your family. may Allah grant all of you lots, and lots of sabr and the ability to offer shukr through such a trial. ameen.

We're all thinking of you and your daughter, Affa. Stay strong, and try to be the pillar here, I'm sure your husband must be distraught as well. I cannot even imagine. subhanAllah. Keep in mind there is no one you can depend on but Him, and He changes situations very swiftly when He pleases.

Also, if you ever want to talk privately or need anything else, do not hesitate. I'm here, we're all here, iA.

[jaani]

Originally Posted by Affa

Asalam Alaikum all

Aleena's blood test results have come and she does have costellos syndrome. We are in pieces after hearing this news. Make dua for her pls.

Wsalam

I don't even know what to say......Aleena and your family will be in my prayers, Inshallah

~j

[silvermalaikah]

inshAllah I'll keep Aleena and your family in my du'aas.

[DramaRani]

Ameen to the duaas. InshAllah I will keep Aleena, you, and the rest of your family in my duaas .

[Affa]

Salam

Jazak Allah Khair everyone. You are all very kind

We went to see her consultant today and yet another disappointment we had to face. I always thought Aleena is quite tall mashAllah but she hasn't even managed to reach the lowest centile in the height chart. Costello children are pretty short and the max height they can reach is 4ft i think.

Aleena's weight gain is poor for her age as she is barely putting on a lb a month. Her vomitting is bad. The consultant is going to refer her to an anti reflux operation which may inshAllah stop her vomitting and then they will put in a gastrostomy tube in her stomach for us to feed her through that.

I was thinking and have been thinking recently about when I was single, had so many problems and used to cry over that. But i never ever thought that the future would be even so difficult. I never even thought that there will be a very difficult challenge ahead of me. I dont know, i guess am in shock. You never think when you are pregnant that your baby will have problems etc. Then when they are born and they look normal, you definately dont think anything is wrong. It's hard because we bought her home, everything was normal, we were grieving for my nana. Then all this happened and now I am grieving for my daughter. I can't even explain. I am probably babbling. But this is a very difficult task Allah has set me and I am not sure if I will be strong enough to handle it.

Pls keep making duas and make dua that I dont lose faith in Allah.

Wsalam

[zzze]

assalamu alaykum

aw, Affa. You wouldn't have been given this trial had you not been able to handle it, so you must be a bery strong personh masha Allah. I think you'll realise this in time if you stay patient and have trust in Allh swt. Alhamdulilah you'll still have a beautiful daughter who you and your family love, and she loves you back.

It's still early days, insha Allah things will get better

[Affa]

Asalam Alaikum everyone

Hope you are all well. I am ok, just getting along. Aleena is going to be 5 months on the 17th. I just thought I would give an update about her. Aleena was back in hospital again due to lack of weight and having severe vomitting with reflux....she wasn't keeping anything down at all. She had a video xray done where they put some fluid in her and they wanted to see if it actually goes down properly or gets blocked and then comes back up. Everything was ok, they just found that the little valve above her stomach is too severly weak and basically it just flip flops all throughout and she can't keep much down if she has more than 40mls in one go. So they put her on a pump feed and she is on that 17 hours a day. She doesn't vomit much now but she still has the acid in her stomach which irritates her and stops her from being a happy bunny.

She was born nearly 9lbs and now is just over 12lbs. One week she puts on around 1/2 or 1 oz and another week maybe 4/5 oz so its a very very slow process but Allah knows best.

She wasn't sleeping for a whole 3 weeks and I was getting about 2 hours of sleep a day and herself too. I was a bit scared because Aleena is in 17% risk of having tumours, especially between 0-2 yrs. We are awaiting for cancer screening dates, ECG dates and they are just taking way too. Her consultant is brilliant though mA, gets everything moving asap.

Aleena smiles ALOT mashAllah and babbles now and then. She will need alot of help with walking due to the shape of her ribcage and she may not even speak clearly due to their head co-ordination.

Oh and i forgot to add that Aleena takes a little bit of solid now and then. Not much but it's a start.

Do keep us in your duas please.

Hope you are all well and family is well.

Wsalam

[PhDGirl]

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