Saying Maaaa

Chehel is now using her voice to say Maaaa....it means Mummy in my language. The first time she did it I kept repeating it along with her  almost for 10 minutes...we both played this game.
She does not call me Maaa directly...she uses it to get attention even when with Dad or brother.
Sometimes when I am cooking in kitchen....she will walk in kitchen say maaa and grab my dress and take me to her toys....it feels so satisfying....deeply satisfying.

Using her own voice

Chehel has been using her voice a lot since middle of December...saying 'aaahhh' all day long when she wants to be heard. We went shopping and I and Sachin were separated....and I found Sachin by following Chehel's sound. She wanted to ply in the escalator and we simply could not allow her for safety reasons. She used her voice all the time to direct us that she wanted it. It went so loud people in the shop were staring at us. We were getting happy and people were annoyed. Finally we had to leave the shop.
One more change we noticed is the moment we put on the machine she hummms 'mmmm' as if testing herself if the machine is working.
If she is quiet means something is not working.

Copying sounds

Today we played the game of opening a box and saying a animal sound and then getting the animal with that sound out. Next take the animal close to your mouth and saying 'quack quack' for a duck. Me and Sachin took turns and said it excitedly...raising eyebrows....nodding head while saying it.
Guess what...after doing it 3 to 4 times Chehel said on her turn 'ahhh ahhh'...and then we did it so many times...and she gighled each time she got a turn. So she can hear it that we are making the same sound twice.
I repeated the same exercise evening with my son and Chehel and it worked again....
Also it confirms she can hear the 'aa' in quack.
Thanks again to the almighty for giving her a start. Ganpati Bappa Morya!!

Knock knock who's there?

When I knock any door not visible to her she thinks someone is at the front door of the house...she points me there. Atleast she can hear if not locate the sound. Then I took her to the source of sound and knocked in front of her and said 'I heard that'.


Yesterday 12th Dec..I laughed loudly when I saw both Chehel and Ishaan sitting next to each other watching the telly ...fully immersed in it. Chehel looked at me and she also made action of loud laugh and a 'Ahh' sound. I kept laughing and told Ishaan to take turns and join us....and the laughter continued....

Next we plan to teach music to Chehel...
The plan is to make music and dance and stop when the music stops...
Also discriminating contrasting sounds is on the agenda...

Yes!! It is working!!

Chehel had her third programming appointment(9th Nov) where she cried again when they tried to find her thresholds for bearable sounds. Before we returned back home we were given 3 new program settings to take home and gradually increase them over the week. We went back home again thinking it is just another programming appointment.
  The next morning we went up one level in her device program settings and then when we did our usual therapy we happened to clap and make aaa ooo noises. She blinked on the clap!!!
  Did you see that Sachin? Is she ok with that setting? I hope its not hurting her.
  Then we clapped again and again and again and she consistently blinked and we were happy that she sensed her first sound. Then we went crazy and kept on making different sounds....ling sounds and singing rhymes with us...but this time there was no clear response. Banging toys and doors and tables...this became a common routine in the house...just to keep a tab on her.

The rehabiliationist, AV UK and here teacher of deaf all confirmed that she had access to some sounds..Ganpati Bappa Morya!!

3rd Decemeber - Today before I woke Chehel from her deep long afternoon nap,,,,I put on her ears gently.....and then called her....she instantly raised her brows and looked in anger....I was happy with her anger.
Later in the day I knocked the door and she searched and found the source of sound...JOY JOY.

4th Dec - Today Chehel was dancing the disco in a bday party.....she was watching the other kids and also moving herself...I was happy to see her do this first time...am not sure if the other kids or the music made her move...I pray it be the music.

Surgery day

19th september
Cant type...its tough


Sleepless nights had become a routine. Chehel had got Jlns syndrome and we not get in touch with a family with similar condition.
Had a couple of discussions with a renowed cardiologist in Great Ormond Street hospital that the surgery will not be life threatening for her. A big relief.

The hospital ward promised us worried parents that they will keep her on Icu ward post surgery. A big relief again.

Few nights before surgery were very difficult. I and Sachin both went mute and just hugged each other ...hiding our tears from each other.
I cuddled chehel tight and used to watch her intently when she went to sleep...trying hard to think positive but a worried mother I was...
I had requested all my relatives to not call me before surgery as it would only make me more worried.
The surgery was early at 8 so we checked in the hospital . Chehel was not supposed to have any food so we just gave her milk early morning....oops it was a mistake.
The surgery had to be postponed to afternoon....felt so soorry and angry that the ward nurse did not give clear instructions.

Saw so many other children present there for some surgery...there was a good play room to keep my little one amused.
It was easy until 10 o clock and then she started getting hungry....
We kept distracting her by taking her around the ward...showing and signing different pictures and toys. By 11 o clock she was tired of crying and finally went to sleep. I held her sleeping in my arms for 45 minutes afraid that she would wake up if i put her in her cot but then my hands had gone numb...and she had to go in her cot. Luckily she did not wake up until 12.30. She woke up ...looked at me...and cried real bad. We enquired but the operation theatre wasnt getting free....
I and Sachin kept distracting her again for the next 45 minutes...
Every time a nurse walked into the ward we thought it must Chehel's turn...it was 2 pm.
I was chanting maha mrityunjaya mantra all this time...ganesha was in my mind all this time too.

I was getting impatient now...
Finally at 2.30 a nurse came and asked for Chehel. She was not the same nurse who came in morning...i asked her...cochlear implant surgery right? Sachin gave me a weird look but I wanted to make sure everything is alright.
The nurse started getting Chehel attention with bubbles.
As they were carrying her to the operation theatre....i burst into tears and did not want to let go off Chehel...i cried and cried.
I held her tight...she looked at me and stopped crying...my brave little girl.
I went in the recovery ward and told Sachin i cannot come to see how they give her anaesthesia...it is terrifying to see your little one struggle and then sink....reaching out to you for help.
I kissed her and let her go and once again reminded Sachin to check all surgery and surgeon details are correct in operation theatre.
I started my chanting and my crying stopped...waiting in the recovery room...in tears...another nurse consoled me and explained me the pager system.
I kept thing of ganpati bappa and closed my eyes waiting for sachin to come out. Have to say Sachin stayed strong and  consoled me....
We started walking out to canteen...
I remembered the blog about wat to do when waiting for the surgery....
Keep yourself busy...go for a walk.....ear and keep up your energy.....
I lay my head down on a table in the canteen trying hard not to show my emotions....to strangers..
Sachin got us food and then I broke again....so deep is the pain......i was thinking about Chehel....tears just couldn't stop....
Today even while writing this blog tears are not stopping....such a tiny little baby and such a risky surgery.....god please please make it work and give me strength.

After a few minutes...we took food and tgen again there was silence and a rush of emotions....i went heads down on the table and dunno when i went to sleep....in my chanting.
When i woke up...Sachin was there...he told me lets go for a walk...i thought there was a prayer room in the hodpital but there wasn't...we found a chapel....so i went in there while Sachin went to get calpol from the pharmacy....god in whatever form...please listen to my prayers...it was very quiet....i prayed for some time and then went out looking for Sachin...
We both went back to the ward to get milk for Chehel...she must be really hungry it was 4.30...and after a few minutes the pager beeped....we both stood up....Chehel is out of surgery.....so soon...hope everything is alright.
We ran to the recovery ward...i quickly ran inside to Chehel's crying voice...there is my baby....a big bandage all over her head and her ears...she was hardly dressed in a thin hospital gown....
I instantly covered her in a dress i had....she was all upset...crying....she came in my arms and felt very heavy...dunno if it was the bandage...my arms felt very weak..
She did not stop crying...shrieking....i told Sachin....milk quickly....she was so upset she did not even want milk....
After a lot of cuddles and repeated attempts when i pored a few drops all over her lips...she opened her mouth for milk and calmed down...still crying in between suction....
The surgeon visited us there...i asked instantly...how did everything go
....he said all went good.....ahhh  said a boice inside me.
He said we had no arrhythmia...both sides electrodes went in completely and the nerves are responding...at that moment i felt presence of a super power in front of me....a smile on the face of the surgeon...just like lord shiva....i thanked him with all my heart....when he went....i looked at Sachin and tears of happiness flowing out .....i hugged Chehel tight...thanked my god.

Chehel's heart rate was being monitored as she was still under the influence of anaesthetics...she held me tight too...all of her ecg stcky point were coming off...we were juggling with wires and emotions.
This time i picked her up...rubbed her back...kissed her forehead...made her warm...felt strong....it helped get her heart ratings better.

She was moved to icu from there and then they all lived happily ever after.....


No it was not so easy...now is the main part...the surgeon had done 30 percent of the job.....the therapy is 70 percent...so now the therapy starts.