Sunday, December 27, 2009

14 months and a wonderful vocabulary!!

You have a wonderful vocabulary for a 14 month old:   Here are some of the words you can say:

Nana (banana)
Boo (blue)     
Pappa (paper)

And here are some of the things you respond to:
"How old are you?"  You point one finger in the air.
"How much does Mommy love you?"  You throw out both arms.
"How much does Daddy love you?"  You throw both arms up in the air.
"Do you want more?"  You touch fingers of both hand (more sign) and say 'more'.
"Do you want to eat?"  You touch your mouth (eat sign).
"Clap hands" You clap your hands.
"Give me a love"  You come closer and hug,
"Where's my kiss?"  You give na open mouth kiss.
"What does the dog say?"  Woof-woof-woof
"What does the cow say?"  Mmmmmoooo
"What does the Hadeda say?"  ""
"Do you want to come up?"  "Up. up' and you raise both arms.

Other Signs you know:
No more

You are such a bright, happy little girl.  You love to learn and you concentrate when I take you around the garden and show you the trees and the flowers.
You also love tobe in the rain and you put your little face up like I do and open yur mouth to catch the raindrops!  You are a precious child Em and I love you very much.

Wednesday, December 23, 2009

Cutie Pie!!


Em - you are such a cutie pie!  You love to play and interact with people.  You shout with glee everytime you see a child; you shout 'hey-yo!' when you see people at the mall or in stores; when a phone rings you shout 'hey-yo", and you are so astute that when someone talking on the phone starts closing off by saying, 'ok then, thank you...' you shout 'bye-bye' even before they say goodbye.
You are a bright, clever, fun-loving cutie! 

Wednesday, December 9, 2009


You love water!  On Sunday at Patty's we sat outside on her lawn and I filled an old cat litter box with water for you to play with. You had such fun with the hosepipe and the water!! 
Love you baby Em!

Tuesday, December 1, 2009

Talking, talking, talking!!

You copy everything we say - even when we try to emphasize a sound,at the beginning of a word you copy that!  I've been teaching you to say 'More' - showing you the sign for more and saying the word.  You started out by doing the sign but now you just say the word, "mmmmmmmmmmm..muh"  It sounds so funny!
We took you to the animal farm at Asagay and you tried to copy the sounds the animals make.  'Gog, gog, gog, gog..." for the ducks  "puh, puh, puh" for the chickens and when you tried to make the pig sounds you just blew a rasberry!!

You are afraid of animals.  I don't know why that is but you blink, pull back and clench your hand, and stick your tongue out when an animal comes near.  Even little dogs get the rasberry treatment although you did touch this little puppy when we held it up to you.  You weren't having anything to do with the pony!

You actually shouted at the little black pigs when they started snuffling around our feet.  And you didn't like the swans - a large black hissing couple that pushed their bills through the fencing looking for food. 
You copy almost everything we say and do. Mom has taught you when she says "how much does Mommy love you?" to throw your arms wide.  "How much does Daddy love you?" you throw your arms up.  I'm trying to teach you to hug yourself when I ask, "how much does granny love you?"
You are a princess! I tied some ivy into a graland and pushed a few flowers into it for your crown. You love walking around the garden and looking at all the flowers. I say the correct words 'bouganvila' 'strelitzia' 'gerannium' brunsfelsia' 'anthirium'. You smile and say 'Ta. ta".

You are curious about everything and sometime the look of amazement and wonder on your face is incredible.  Greg opened an umbrella the other day and the look on your face made us laugh.  You thought he was magic - turning a common old walking stick into a floating canopy!
I wonder what goes through your mind?  How do you process everything you see?  Its as though a cognitive gene has just switched on and you are only now able to examine, absorb and identify things around you.  Your brain is like a little computer that is frantically storing information about the world around you.

Sunday, November 15, 2009

Another treatment

Hello Em,
You came out of hospital today after being in 3 days for your Pamidronate treatment.  Mom and Dad took you in on Friday morning and Dr Roos put the port into a vein in your head straight away this time.
Last time you went in for treatment, they did the infusion for 6 hours every three days.  This was going to be done every three months.  But, your Dad is really on the ball!  He got hold of the Protocol from Shriners Hospital in Montreal where a Dr. Glorieux pioneered the use of bisphosphonates to treat children with biophosphonates.  The protocol is to give small children (like you) smaller doses more frequently so Mark gave this to Dr Roos and now you will go in every two months and have the treatment for three hours not six hours every three days.  You screamed the place down when he put the port in - which is exactly what I would do if someone tried to push a tube into a vein in my head.  But, once the port was safely in you settled down and when we got there to visit you were your happy little self again. 
In the early hours of Saturday morning Tammy found that you'd pulled the canula out and there was blood everywhere so you had to be bathed at 4 in the morning!  And, Dr Roos had to put another port in.   I think Mark and Tam know more about your treatment than any of the doctors or nurses.  The Arieda (Pamidronate) comes in 15ml bottles.  You only have 5ml at a time and Mark heard the sister telling the nurse to throw the left over away.  Mark told her not to as it can be kept in the fridge for 24 hours.  She argued with Markm then phoned Dr Roos who confirmed what Mark said and told her to put it in the fridge.  At over R800 a bottle its sacrilige to chuck out 1/3 of the bottle.
You are such a sweetie Em.  You have started copying everything we do and say.  Tammy asks you, "How much does Mommy love you?" and you throw your arms out wide.  "How much does Daddy love you?" and you throw your arms up above your head.  You can clap hands, point at anything, do the touching fingers sign for 'more', say 'nana' for banana, 'buh' for buttons 'dada' 'mama' 'yum' huyo' for hello and many other sound-words.
You had your last treatment this morning and after having your femur x-rayed (you have an appointment with the orthopeadic specialist this week) you finally got home after lunch.  Finn and I went to visit you and you were happily playing on the crapet with Mark.  You giggled and laughed out loud, and tried to crawl on your knees which freaks us all out!

Saturday, October 31, 2009

The Spica came off early

Wed: 28th October 2009

Hello little Em,
Your Mom and Dad took you to Entabeni Hospital where Dr Stead removed the spica cast this morning.  Tammy said it was done very quickly but you screamed when you felt the saw near you anyway - I don't blame you, I would have screamed too!
Tammy brought you here and it was lovely to hold you close again without the Scotchcast.  I was a bit concerned because twice whilst you were sitting in the pram, you flinched and cried when moving your leg.  Perhaps your joints were stiff and it was sore to move the knee or hip.  I suggested to Tam that she massage your joints with baby oil just to get them pliable again. 
A couple of days ago you started leopard crawling in the cast.  You turned over onto your tummy, pushed down with your elbows and pushed off with your right foot - moving forwards at quite a pace.  Your Mom said that she had even caught you trying to pulll yourself up onto your little armchair in the lounge!  (It looks like this one but is bright orange.  Chris Degenaar - Abby's father - gave it to you.)

It is quite nerve wracking to bring a child home after having the cast removed.  Everyone sighs with relief that it is off but, unlike other children, the chances are that you could fracture more easily because of the three weeks spent immobile in a cast.  I told your Mom about the time we brought your Dad home after having skin traction plasters removed.  I think he was about your age.  He cried on the way home and fell asleep in the car so we put him in the cot as soon as we got home.  Finn and I went to make some tea and suddenly we heard Mark screaming.  He had woken up and tried to sit.  He fell forwards and broke the other femur!  It was unbelievable - really, really unbelievable.  We had to wrap him up and take him straight back to the hospital for x-rays and to be put be back into traction.  We certainly didn't want anything like that to happen to you.
We know that you are going to start getting mobile now and will want to crawl, pull yourself up on things and even try to stand but it would be best to wait until the fracture has completely healed - until the callus has been absorbed as new bone.  Its a bit like a plumber's weld - you need to wait until it is set hard before you start putting any weight onto it.  It looks something like this picture here - with new callus surrounding the fracture site on the shaft of the femur.  Your callus is good, quite exuberant, but it is also osteogenic and can fracture more easily than normal callus.
I'm sure you are going to sleep better now that the cast is off - but I'm not sure that your Mom and Dad will, they'll be listening out for every little peep from you!
Take care my little princess.
I love you.
Granny Silly.

Tuesday, October 20, 2009

First Birthday Party

Happy Birthday Emily,  You had a wonderful party at our house.  Mom bought a Winnie the Pooh table cloth for the diningroom table and made all sorts of snacks - quiche, sandwiches, sausage rolls, cheese rolls, pizza squares: I ordered cup-cakes and cheese cakes and Granny Laura brought a gorgeous No1 birthday cake with Winnie the Pooh characters on it. We had two birthday banners and pink and white balloons.   You gave lots of kisses - got lots of hugs - and enjoyed being the centre of attraction.  About 25 people came and you got quite shy when we sang happy birthday to you.  You got lots of presents and with Mom sitting on the floor in the TV room you had fun ripping off the wrapping paper and opening the boxes and presents.  You didn't let the spica cast bother you and even spent some time rolling on the carpet, playing with some of your presents.  Altogether, it was a wonderful day and you were the perfect little birthday girl! 


16th October 2009

Hello my darling,
It was your birthday on Friday.  Because we were having a party for you here on Sunday we thought we might not even get to see you on your birthday, but Mark and Tammy took pity on us and brought you around for a visit.

At first they weren't sure how they would transport you in the car because you can't sit in the car seat.  I bought you a plastic dog bed!  I found a sheet of foam and covered it with an old duvet cover (made smaller to fit) and Tammy took the harness off your high chair and threaded it through the slits in the bottom of the plastic dog bed.  Voila!  You have a perfect, transportable bed complete with harness that fits on the back seat!

We bought you a baby doll that cries, breathes, laughs and burps after drinking from a bottle.  It really is a bit weird - very life like - and you were quite taken with it.  We also bought you a few books to add to your collection.  I hope that you will love reading like I do.  Your father hardly ever read anything besides computer books!
It was lovely to have you here for a little while and we all sang Happy Birthday to you.  Its just sad that you are in a cast on your first birthday.  Tammy found some lovely brightly coloured crepe bandages and will colour co-ordinate your birthday outifit on Sunday!
I have ordered special cup-cakes and cheese cakes for your birthday and Tammy will be making savoury snacks as well.
Big hug my darling,
Love you,
Granny Sil

Friday, October 9, 2009


Hello my darling,
Yesterday you fractured your left femur.  It was such a shock because you were in the pool with Jackie your swimming teacher when it happened. 
Tammy got you to Dr Bekker's rooms and he suggested she take you straight to Entabeni Hospital for X-rays.  The pictures showed an oblique fracture, starting about mid shaft.
"Oblique fracture implies a fracture line that is oblique to the long axis of the bone. These fractures generally result from bending, with superimposed axial compression. As a result of the obliquity of the fracture line, this fracture tends to override or rotate unless traction is maintained throughout the period of healing."
Mark and Tammy think that the fracture might have started earlier, in the morning at home.  Tam said that you spilled your milk on the tiled floor and when you tried to turn over into a crawling position your hand slipped and you fell forward and banged your head.  This is when you could have put stress on the leg.  But, you didn't cry when she dressed you and took you to swimming although it is possible that there might have been a hairline stress fracture from the fall.  Kicking your legs in the water would have aggravated the fracture and extended it. 
The staff at Entabeni were very kind to you and your Mom.  Tammy carried you into the hospital and held you to her chest the whole time.  Eventually, at mid-day a private ward was made ready and she was able to lie on the bed, still holding you. The theatre nurse didn't wan't to cause you any further pain so we took you and Mom on the bed down to theatre.  Even then, they wheeled the two of you into the operting room and applied the mask whilst you were lying on your Mom.  You didn't even know what was happening.
Instead of traction, Dr Stead applied a spica cast under anaeasthetic. This is a half spica.  There is a band around your waist and a cast on one leg only.  When your Dad had spica casts they always put both legs into plaster and had a broomstick between the legs, usually just above the ankles.  Your cast looks easier to handle but it still means that you can't sit or bend from the waist.
Em, we are all so sad that you have had another break.  Your Mom and Dad especially hoped to be able to protect you and prevent fractures until you were at least 3 years old - just to give you a chance to develop and grow fracture free.  Unfortunately its just not possible to prevent all fractures - they occur with little or no trauma and when you least expect them to happen.
When Mark phoned to tell us that you were at the hospital Finn answered the phone.  Your Gumpy got into such a state I couldn't understand what he was saying.  When he managed to say that you had fractured your femur I just went cold.  It was like a nightmare.
Today Patty and I visited you for a while.  Tammy needed to do some shopping so we baby-sat you for a while.  I put you in your pram and took you for a walk outside.  You like being outdoors and soon you went to sleep in the pram.  Its going to be hard for your Mom to keep you occupied whilst you are in the cast but we will help as much as we can.
I love you little Em.  I wish there was more we could do to help you and your Mom and Dad.
Sleep tight my darling.

Saturday, September 26, 2009

11 Months old!!

Hello little Em
Time is flying by. You are 11 months old now and wiegh about 11kg. You have got 4 teeth - three at the bottom and one at the top - that have come right through - and two more coming through. You are rolling all over the floor and move backwards at a fair pace - but you haven't quite worked out how to move forwards yet! You sit and play but Mom and Dad don't allow you to sit alone in case you decide to fall forward and try to crawl. You are going to an OT (Occupational Therapist) in Pinetown who treats little Abby as well and she is teaching you how to roll over sideways so that you get into a crawling position. At your first session with the OT she let you go sideways with weight on your hand and something clicked. You screamed, Mark, Tammy and the OT thought you'd cracked a bone in your arm. Mark said that he nearly puked, he got such a fright! You didn't break anything though, it was just your lax joints which can click out of place. It happened once before when you were here with your Mom and your foot clicked. Its a loud sound and is quite scary.
You are going to RuthMarie-Smith's school of swimming and Mark takes you in the pool there. Your swimming teacher's name is Jackie and she is teraching you to put your face in the water. Swimming will be really good for your muscle tone and good, strong muscles help to protect bones.
Yesterday you met a very old friend of ours, Prof Bill Winship. He is a geneticist Paediatrician, cardiac surgeon - a brilliant man and a lovely, lovely person. Bill told Mark and Tam that you have Type 1 OI which is the mildest form. I think they were relieved to finally have a diagnosis.
Now everyone has to put on their thinking caps on how to best get you weight bearing, moving about and progressing in the safest possible way. We all want you to learn to walk Em but we can't bear the thought of you have another break. Its like being on a tight-rope.
It is your birthday next month and plans are also being made for your first birthday party.
I love you little girl.
Kiss, kiss,

Saturday, August 29, 2009

First Pamidronate Treatment

Hello little Em,
Last weekend was a milestone for you, and for your family. Your cast came off on Friday and on Saturday you went into Parklands Hospital to start the first of your years of Pamidronate therapy.
What this means is that the doctor inserted a feed line (small plastic tube) into a vein in your foot so that they could put in a drip to administer the Pamidronate over a period of 6 hours. Pamidronate is a biophosphonate - like the one I take for osteoprosis - that should strengthen your bones and help them not to break.
It was quite truamatic because they couldn't find a vein large enough in your right foot so they had to try again in the left foot. Tammy said that Dr Roos was sweating after doing this procedure - especially with the right foot as that is the leg which has just come out of plaster.  Tammy stayed in the hospital with you and we visited you each day. On Monday they had to remove the feed from your foot because they couldn't flush it (they clean it out with salt water - which stings and made you cry) so they put a new feed into your skull. My heart jumped when I saw you with the drip in your head. But, Tammy said it wasn's as painful or traumatic as having it in your foot. So, my darling girl, you have now had your first three days of Pamidronate treatment. You will have this every three months for about 5 or 6 years.
It was a very upsetting and trying time for your Mom and Dad - especially your Dad who says that he almost feels your pain - but in a perverse sense, I wish it had been available when your Dad was little. Had he been put on a treatment like this he might not have had over 120 fractures, deformities, surgeries, shortened growth and everything else that went with his condition.
I babysat you a little while today and we sat on the lawn watching the cars go by on the road. You love being outside and I hope that soon you'll be able to crawl and investigate your world.
Today - Sunday - we had a family dinner at Patty's and after lunch we sat with you on her front lawn. I intoduced you to Pansies and you seemed charmed by these beautiful little flowers - so much so that you tried to eat them all!
I hope this treatment helps prevent fractures Em. I can't bear to think of you having another break and that is why I am so reluctant to put you on the ground and let you try to crawl or move about yet. You are getting frustrated and we are being over careful but its like walking a tightrope - on the one hand you don't want to be over protective but at the same time, you have only been out of a cast for a week and we need to protect your leg until it is quite strong again.
I hope that you will soon be able to crawl about on a lawn, pick flowers and do all the things other babies like to do.
I love you Em