Morgan

Victoria, January 1998

Morgan was born 13th January 1998. He was of low birth weight when he was born – 2485g (5lbs7oz), his length was 46cm and head size was 31cm. After the first day or so the nurses pointed out to the Paediatrician that he was a little bit too floppy and he had an unusual cry. I remember in the hospital when they brought him down to my room, I said “That must be my baby he sounds like a little kitten when he cries.”

He would not breast feed very well and had to be supplemented. I had to stay in for a week. The Paediatrician had me see her a week after I got out of hospital instead of the usual six weeks. When I saw her she looked at Morgan’s palms and said that he only had one distinctive line across and this showed a chromosome problem. I thought he may have been down syndrome but she said no. She said she needed to do a blood test to check for various diseases. When the results came back she said he was a Cri du Chat baby and she didn’t have much info on it, but she explained the best she could. We went onto the internet and printed out tonnes of info on Cri du Chat- most of it was depressing.

Morgan developed quite severe reflux and stopped breast feeding at around 4 months. I had to thicken his bottles and give him reflux medicine half an hour before each feed. He would do the most incredible refluxes that sprayed across the room. He was very unsettled and woke up every two to three hours day and night. Morgan kept on getting ear infections and these transferred to his chest. He was in hospital 3 times on a respirator. Eventually, he was put in hospital and he had grommets put in his ears and I have not had one problem with him since.

Morgan started smiling at funny faces and actions at about 8 weeks. He was a very squirmy baby and would manage to roll over at 8-10 weeks and could not be trusted on beds or couches. He started to recognise me at about 3 months. First Morgie started to lift his head at about 6 months but always held his arms back like he was swimming. Morgan started to crawl at a year and a half on his tummy, army style. He is very determined and hard to persuade away from his goal. He started to sit half way up at about 18 months and then at 2 years was popping up and down all the time. He started to say “bub bub bub” at 18 months and at 2 years “mumma”. In April this year he started to climb up onto the couch and he weight bears if only on his tippee toes. He now realises he will hurt himself if he dives off the couch so he doesn’t do that anymore.

I am hoping he will walk by 4 or 5 years. When he sees me now he says “mumma” so he knows that his word is associated with me. He goes in a standing frame everyday and he has special boots to support him. The Child Development Unit and the Special Needs Children’s Group have always provided me with special equipment such as high chairs, standing frames etc. In Cairns we have Noah’s Ark which caters only for special needs children and is a toy lending library.

Morgan has slowly developed his fine motor skills and can pick up small objects. He has unusually small thumbs and has a bit of trouble using his thumbs to manipulate things. He is a good sleeper and started sleeping through at 10 months old. The reflux went away slowing from 18 months onwards.

I believe Daycare has really helped Morgan in his development as they have always put him in with his age group. Morgan laughs a lot, never complains unless he is tired or hungry. He is the “perfect” child. He sticks to a routine and always settles in bed at night. He loves his cot and when you put him in there (amidst all his stuffed toys) he smiles and snuggles into his lamb skin. He is happy to play on the floor or couch amusing himself and is always investigating around the house. He loves to feel different textures like carpet and he loves to knock on doors and screen doors. He eats what you give him, except he refuses to chew and spits out carrots and pieces of potato. He will eat noodles and soft food. He will hold his bottle for a few minutes but then flings it around. I think he thinks that it is my job to hold the bottle. He will drink out of a cup but won’t hold it and it takes so long there is no point.

He vocalises a lot and loves the sound of his own voice. I am very happy with Morgie’s development especially as the years have gone by (he is only 2 and a half) and I have seen him accomplish different things. He started to sit all the way up and balance really well in January this year (aged 2 years). He also started to say “mumma” and now says it to me when I walk into the room or when I pick him up from somewhere. He is climbing on the couch and doing some weight bearing on his feet. His feet are very weak still and buckle inwards so he manages to stand on tippee toes like a ballet dancer.

He laughs a lot and gives out sloppy kisses to all and sundry. He has a very placid nature and is happy amusing himself and is into everything!! He never stops still until nap time and sometimes falls asleep sitting up or slumped over. He is very routine orientated and goes to bed at 7:30 pm and you can rely on him to sleep all night until 6:30 am.

Morgan started crawling at about one year and a half, but is still doing tummy crawling with one leg bent and one leg straight. He is very fast though. His other words are “bub bub bub” and “dad dad”. He won’t chew yet nor will he hold his bottle.

He loves his brother very much and his face lights up when Eden (4 years old) comes into the room and he giggles a lot at Eden when he jumps on the bed. Eden understands Morgie has “a little bit missing” and can’t join him in the pool or walk yet. Morgan loves to kiss Eden and Eden is pretty tolerant of Morgan rolling on his toys etc.

He goes to daycare four days a week and loves it very much. They are excellent there and have integrated him into the sessions just like all the other kids. The Centre applied for funding and have a Special Needs Worker in his group a few hours a day. This worker helps to have Morgan treated as normally as possible.

All in all, his Paediatrician is very happy with him and his therapist here is surprised at some of the things he has done. Unfortunately, living in Cairns, there are not a lot of services or therapists available for Morgan and he sees a physiotherapist only once a month.
He is a beautiful child and I am so glad he has come into my life. People just are drawn to him and the girls at Daycare even ask to mind him on weekends they love him so much.

Update on Morgan October 2000

Morgan is now pulling himself up to a standing position in his cot, which is really exciting. Not only can he physically do it but something has connected mentally to enable him to do it. He is also communicating a bit more as in when you ask him if he wants a bottle he says the “B” sound for bottle. He now has a special needs walker at home to encourage him to walk and besides, it is a different position for him and he has already worked out that he can travel along in it.

He is going to the Special Education Unit attached to a primary school here next year for two mornings a week and Eden will be next door at the Pre-school. I was unsure about whether it was a good idea to put them at the same school, but they are very attached to each other and Eden adores Morgan. Morgan always looks around for Eden when you ask him where he is and is constantly crawling over to him and pulling his hair/biting or just lobbing himself onto him for attention. He giggles at a lot of things Eden does and pays Eden the most attention out of anything. Eden is very protective of him and his special needs equipment at Daycare and if we go somewhere without Morgan, Eden wants to know where he is. Eden told Morgan he missed him and wanted a big cuddle from him, when Morgan stayed at his Father’s when he had the chicken-pox.

Update on Morgan Oct to Dec 2000

MEAL TIMES
Morgan drinks from a cup now – it has to be held for him, but he does try to help you hold it too. He loves drinking water! He has shown an interest in where his food is coming from and will dip his fingers in it and put his fingers to his mouth. He can also hold a spoon and guide it to his mouth but he will not or cannot feed himself yet. Morgan has finally, at the age of nearly 3 years, hit 10 kgs!!

AT PLAY
I bought Morgan a “twirling whirling garden” and showed him once how to press down on the button to get it going and he did it himself from then on. He seems to understand a lot more than we realize. He understands anticipation so when you do ‘round and round the garden like a teddy bear” with him he giggles just before you tickle him.

DEVELOPMENT
Morgie is now using his foot to bang himself in the head, his head banging has gotten to be a very big problem. He has had a soft helmet made (sort of like coolite) and it looks like a boxer’s head padding. He seems to bang it if he has a need e.g. hungry or if he is tired or sometimes I just cannot guess what it is.

Morgie got a new brother this month and so far he has not shown much interest in him as I am a bit worried he may be very rough with him.

SPECIAL EVENTS
Morgie’s brother Jared John was born on the 19th December 2000 and he weighed 6 pounds 9 ounces. I did not have an amnio as the Geneticist told me that Cri du Chat was not genetic unless you or your partner had part of No. 5 chromosome missing. I was not worried that there would be anything wrong with the new baby, and although not planned, I was looking forward to his birth.

Words cannot express the joy I felt in holding Jared in my arms and knowing he was perfectly normal in every way – it was such a healing process to watch Jared develop so well. This does not, by any means, take away from the fact that Morgan is very loved and very wanted. It’s just that bringing up a special needs child is a hard road to take and certainly a learning curve!!

MORGAN IN 2001

MEAL TIMES
One morning in mid-January, I was giving Morgan his bottle on the couch and I put it down to do something and when I came back he was holding the bottle himself. From then on I made him do it. He still won’t chew and I have to blend all his food, (and his baby brother’s) so my kitchen is like a baby food factory. I saw the Nutritionist the other day and she gave me some really good recipes to try to fatten up Morgan as he is only 11 kgs.

AT PLAY
In February I put Morgan on his little four wheel bike (the push along ones) and Eden was on his old one and Morgie copied Eden and started to propel himself forwards and backwards. He can’t steer but he can have fun on it. He has started to point when I ask him “where’s the bubba?” and he likes you to ask him “give me 5” and he does and then you tickle him.

He loves the swing I had put up out the back and because he is so slight, he can go in his baby brother’s baby jumper – which he twirls around and around in.

DEVELOPMENT
Also in January, he was sitting on the floor and he just started to shuffle along on his backside all over the house. He started at the SEDU in February and whereas he does not join in much he is doing well with the changes.

April – We have now moved to Brisbane as there will be better opportunities for Morgan here. He is going to a SEDU (Special Early Development Unit) and can stay at the Special School until he is 18 years old. He loves his teachers and has settled in really well to all the changes in his life.

July – For the first few months here, Morgan was waking up in his bed at 3:00 am etc and crying and banging his head. The head banging became more frequent due moving etc. but I put Morgan back into his port-a-cot for sleeping and surrounded him with his familiar stuffed toys and he soon settled down. He likes to help me dress and undress him when I say “lets put on your socks” he points his little cold feet up for his socks and shoes. He gets excited when I say it’s bath time and tries to help me get out of his clothes himself.

He is obsessed with the heater in the mornings and stays in front of it the whole time. It is very hard to know whether he is hot or cold and I have to put a suit over his track suit as he kicks his covers and socks off. I have bought some girls stockings and these seem to keep him warm and he can’t get them off.

He will take steps now with you holding his hands and seems very aware of his environment. He will reach for a drink or his food when it is near him and I have been trying to get him to choose between food and drink. I have been using some simple Makaton sign language to help open up the lines of communication with him and to try to eliminate the frustration he feels at not being able to communicate, thus in turn, eliminating the need to head bang.

The Paediatrician down here said that I should try to ignore the head banging and then communicate with him in other ways so that the head banging does not get a reaction and he should eventually give up on it. We are awaiting a special needs walker the same as the one he had in Cairns. It is called a Pony walker and can be adjusted until he gets too big for it (or hopefully walks first). As soon as he is using this again, he will be off the floor a lot and will not have the opportunity to head bang.

Morgan stresses out when he hears the ice-cream van bell and is inconsolable. I have read that Cri du Chat children can be hypersensitive to some sounds. This is just a new thing with him. He is still a very happy and loving child and is very popular wherever we go. Morgan is very good with his baby brother and apart from stealing the dummy out of Jared’s mouth in the car he doesn’t hurt him in any way.

SCHOOLING
Morgan is attending daycare two days per week and he loves it. He has a Special Needs Worker (Kathleen) appointed to him (funded by P.L.A.Y. Care) and she helps to integrate Morgan into the day-to-day activities such as painting, playdough, outside play and mealtimes. Kathleen is rewarded by lots of sloppy kisses (with the tongue!) from Morgan when he is in the “kissing mood.”

On Thursday and Friday he attends the SEDU and sees all of his therapists there e.g. Physio and Speech. Disability Services Queensland are arranging for their therapists to see Morgan at home as well. At the SEDU we have set some small goals for Morgan mainly due to his very limited communication. We know he understands a lot but just cannot communicate from his end. He also loves going to the SEDU and has such fun there as the day is a full day of activities.