The early says of living with a very special baby

12 Nov 2009

Today I went to the hospital to see my baby nephew "Kareem" who was born the day before while I was travelling. The doctor was examining him and I heard his mum crying: he is Down’ isn’t he? Her voice was full of mixture of knowledge (she is a paediatrician) and false hope. The kind doctor said yes but we will do further tests. He left and I held the baby while mum was on the telephone to give the "sad" news to the baby’s dad who is working in another country.

Holding the babe was an amazing moment for me. I could feel floods of love pouring from every cell in me towards the baby. I nicknamed him Boos (kisses) feeling that I want to cover him with kisses except that he was too pure to kiss more than his tiny feet.

Since that moment I am still struggling to believe that there is possibly more love (at least his parents) that exceeds the feeling I have for him.

Dec 2009

Bebs (I keep inventing more derivatives from the original nick name I gave him!) is home but he is not growing very well and we are worried. His mum spends 2 hours a day pumping breast milk in bottles to save him the trouble of breast feeding as he is finding it difficult and we are worried that he would be advised to go for bottle feeding.

Dec 2009

Bebs had a heart echo. His 4 heart chambers are almost one -basically they are not separated as in normal heart and he is lacking one valve. Therefore his body and brain are not getting enough oxygenated blood and that is part of his lack of growth. We start the saga of fixing a date for his heart surgery. Every time the hospital gives us a date, mum and baby go to stay a day or two to prepare for op. Then Bebs gets a fever and op date gets cancelled.

May 2010

Now we are in May 2010 when another saga started. Our local hospital stopped performing open heart surgery for babies and we were referred to Southampton hospital (two hours away from us).  So we had to have a more complicated arrangements: I took time off work in order to accompany mum and baby to the Southampton hospital while his brother Shadi stayed with our other sister. 

At Southampton, Bebs got a date for the operation but in that morning he developed a fever. More blood tests from his tiny veins revealed no infection. Then they decided to test his urine by taking a sample through inserting a needle in his tummy to go straight to his bladder. That was really a horrible procedure which resulted in nothing- no urine came out to be tested. 

His mum tried hard to convince the surgeons that Bebs had no infection but his slightly high temperature was due to dehydration that needed fluids and that the baby was ready for the operation but none would listen. She cried her heart out as she became really worried about his health with his heart condition stopping him growing. 

On top of all that he had some sensitivity to formula milk which was not detected early despite mum's concerns. He was fed through a nasal tube even when he was home. but that is another story! 

Finally the day came and he had his operation. His dad flew to England and he was with his baby immediately after the operation. 

At last he came out of the operating theatre and we were told that he was fine!

OMG at last his hear started to pump enough blood with oxygen to his body and to his brain so we could hope that he starts to catch up on mental and physical development. 

After the hear operation in his car seat ready to go home-at last! 

Learning maths

30 October 2016 (Kareem is almost 7 years old)

I forgot how Kareem learnt to count!. We used books where he traced figures using filter pens which he wiped away afterwards. He really liked to do that and we did it regularly for days and days.  The school played an important role in teaching him the numbers and he liked repeating them. We started counting things.  He loved counting his fingers but for long time I am not sure that he knows by heart that he has 5 fingers in each hand and total of 10. 

Now he can count up to 20 and he loves counting. He also learnt to write the numbers up to ten. His writing which has been all over the place is becoming a bit clearer. It is difficult for him to hold the pencil with a good grip. His mum got him special elastic bands that hold the pencil and 2 fingers but he did not like them. He still holds the pencil in its middle which makes the grip difficult and the writing not focused. However, often he tries to change the grip and holds the pencil near its tip and writes better. Other times he refuses my help to get his fingers nearer the tip of the pencil. If I insist then he would throw the pencil, paper and his glasses away.

This summer (2016) we travelled and I almost stopped doing maths with him. So it has taken some time to get him to remember how to write the numbers. After about a month of daily work, he occasionally forget how to write 3, 5.

Additions:

I have been trying to get him to learn the concept of adding.  I thought that beads would do the trick, but he uses them (and other objects) as toys for playing not counting!. So we use the old method of :

3+2= Leave the 3 here and put the 2 on my fingers. Then I ask what is after 3 and he counts on my fingers. I tried to have 3 fingers on one hand and 2 on the other but he gets confused.

By using this method, he can add up to 9+1. We also use a game of puzzles that has one side the equation with pictures e.g 3 ducks + 4 ducks. The other bit of the puzzle is numbers from 1 to 10. He counts all the ducks regardless of the plus sign and then chooses the correct puzzle number and fit it.

However, I am not sure that he actually gets the concept of addition in his head. His mum and dad use small white boards with him where he chooses the equation numbers and they help him counting on his fingers then write the number. It becomes a bit difficult when he wants to tens and hundreds together and accept he does not have enough fingers to count!

Yesterday he wanted to do 400+20. Today he was doing 200+2 !

I will go back to count oranges and apples and see if it works better.

Here is Kareem learning about volumes: more and less (March 2016)