Bigger and better adventures

 DEVELOPMENTAL REVIEW OF:
NAME: Talia
DATE OF BIRTH: 20/03/2007 EDC: 20/6/07

SEEN IN.-THE KEMH DEVELOPMENTAL ASSESSMENT CLINIC ON 25/06/2008
Talia was seen for developmental assessment today as part of the neonatal follow up programme. Talia was born at 26 weeks gestation weighing 855gm and is now 15 months of age equivalent to 12 months corrected age. Neonatal details are shown on the discharge summary. Features of note included: Chronic lung disease requiring supplemental oxygen and CPAP for a long time. Normal cranial ultrasounds, no IVH, no retinopathy of prematurity.

RECENT MEDICAL HISTORY
Talia has been healthy with no hospital readmissions since she was initially discharged. She is seen regularly by ophthalmology and they have no concerns. She has also been seen in audiology for hearing testing - there has been some middle ear Eustachian tube dysfunction and she is due to be reviewed again for hearing testing. Immunisations are up to date. Health is otherwise satisfactory.

DEVELOPMENTAL PROGRESS
Talia has demonstrated developmental delay across all skill items at each of her developmental reviews, however she is beginning to make some considerable gains and her parents are pleased with her progress. She has now been crawling on all fours for about a month and did not ever commando crawl. She pulls herself up to standing and is cruising around the furniture and will walk when she is led with fingers. She does not yet walk behind a trolley toy and is very reluctant to climb up any steps or pull herself up over a ledge or onto a sofa. Hand preference is not yet clearly established. She claps hands in imitation but is not yet waving ta ta or pointing at objects of interest with her index finger. She can pick up small objects with a bilateral pincer grip. She does not yet use any words specifically apart from possibly cat and does not say mama or dada. She, however, responds to her own name, enjoys music and singing but does not vocalise to herself with this. She does not consistently shake her head for no. She is normally a very placid and happy little girl. She is not particularly affectionate, however plays interactive games and helps with dressing. She fingerfeeds herself and can drink from her own sipper cup, is not yet using a spoon. She sleeps right through the night and has two short daytime sleeps.

ON EXAMINATION
Talia’s height was 70.1cm (3rd-10th percentile), weight 8.56kg (10th-25th percentile) and head circumference 46cm (50th percentile).Talia is now well established on the percentile chart and tracking along the percentile lines.

A Griffith’s Test (Revised) was carried out, with the following results:
A Locomotor 31 - 10.25 months
B Personal / Social 35 - 11 months
C Hearing / Speech 26 - 9.5 months
D Eye / Hand Coordination 31 - 10.75 months
E Performance 31 - 11.25 months

Age Equivalent 10.5 months

During testing Talia was beginning to demonstrate concept of object permanence and roll a ball in reciprocal play. She currently drops a cube for a third, clicks bricks together and is starting to put blocks in and out of containers in play. She made attempts to play with the formboard puzzles but was not able to complete these. She was trying to replace the bricks back in the box and demonstrated normal fine motor dexterity.
Neurological examination shows no evidence of focal neurological signs or asymmetry. She has normal muscle tone and power but reflexes were difficult to elicit. Parachute response was symmetrical.
General examination of cardiovascular, respiratory and abdominal systems showed no abnormality.
Normal female genitalia. No birthmarks or scars of note.
Vision was assessed using Stycar mounted balls and she followed diameters down to 2mm suggesting normal visual acuity.
Hearing screening was carried out using visual reinforcement audiometry and this produced prompt responses on either side at 25dB level suggesting normal auditory acuity. Tympanic membranes and Tympanography were not done. Dentition was normal.

At just 12 months corrected age, Talia is making satisfactory developmental progress following her extremely preterm birth and low birthweight. I think she would benefit from involvement of Play and Learning and understand that she has also been referred onto CDC Physiotherapy for monitoring of gross motor skills in recent months.
As part of the neonatal follow up programme Talia will be seen on a regular basis until school age and the next anticipated review is at 2 years corrected age at the State Child Development Centre. I would be happy to review Talia again in 6 months to monitor her developmental progress should there be any concerns in the meantime.
DR XXXX Developmental Paediatrician

Happy one year corrected Talia!

The last few weeks have been c.r.a.z.y.

Everything was going along fine, until 2 days before Talia’s 12 month corrected paed check up. We had a phone call to say Talia’s Grandpa (my father-in-law) had suffered a mini-stroke while on holiday in South Africa, and was in hospital. He had severely blocked carotid arteries and would require surgery before he could fly again. It might mean that he wouldn’t be able to make the baby blessing we had organised in Perth for July 5.

Tuesday 24 June. We phoned the in-laws in South Africa and were told Grandpa had just gone into the operating theatre. It’s a routine operation. Grandpa has survived much worse things in his life and we are sure he will be fine.

Wednesday 25 June. Talia’s 12 month check up. When we got home we read the email saying Grandpa had suffered another stroke at the end of the operation. “At the moment he does not have the use of his left side. However this may change and he could recover from the present paralysis. Tomorrow morning he is having a brain scan and from this we will know more about his condition.” Now we were worried, and started planning a trip to South Africa to visit him. Naturally we want to take Talia, the apple of his eye, but she doesn’t have a passport. I spend the evening filling out the passport forms.

Thursday 26 June. Another email in from South Africa - “Unfortunately the scan does show substantial damage to the brain. The extent to which the damage is permanent is unknown as yet, as he may still hopefully recover somewhat. At this stage he is sleeping most of the time and is unable to speak although he does seem to respond to some stimulation, and seems to hear what we are saying to him.” Talia is perfectly behaved for her passport photos. We call the doctor in South Africa in the afternoon and he says that if Grandpa can last until Sunday, then he will probably pull through. We later talk to our in-laws, who say his condition has deteriorated since yesterday. We advise people in Perth that the baby blessing is looking like it might not happen. We wonder if we should fly without Talia, especially if Grandpa is in intensive care.

Friday 27 June. The passport application is lodged in the morning, and I spent the afternoon looking at flights to Johannesburg for my husband departing on Sunday, with me and Talia to join him once the passport arrives. In the late afternoon the phone rings with bad news. The doctors have advised the in-laws that Grandpa is not going to pull through. It’s almost too much to take in. When I say that Daddyfeatures was going to fly out on Sunday, they tell me they are sure it will be too late. We are left in limbo, waiting for the worst to happen, scarcely able to believe we won’t see him again and cannot be there even to hold his hand as he lies in intensive care. Little more than a year after our own experiences with intensive care, the pain is very real. I wonder if Grandpa has the same leads and monitors as Talia did, as I picture him drifting gently away from us. The nightmare we were spared with our daughter has come back to haunt us. I cry a lot.

Saturday 28 June. A week before the baby blessing was due to take place, I dress Talia in her beautiful bright dress and we take her to synagogue. We finish the service with one of my favourite tunes and go home to hope the phone doesn’t ring, that somehow Grandpa might still have a ninth life left and the doctors might be wrong. Unfortunately, later that afternoon, the phone rings to tell us we have lost him. I cry a lot more.

Sunday 29 June - Tuesday 1 July. Uncle Peter arrives from Canberra - he was going to come for the baby blessing and just changed his ticket. It’s good to have all our little family together. Grandpa’s body is being repatriated to Sydney later in the week. We organise flights to Sydney, accomodation for the cat, hire of a cot and high chair and car with a baby seat, notices in the papers.

Wednesday 2 July. We fly together to Sydney. It doesn’t seem real. I thought walking into Grandpa’s flat would be like a slap in the face but even though no-one is there it just feels like normal, as if he will pop out of the study at any moment and say “Wow, look at Talia” with a big beaming smile and a European accent still strong after more than 50 years in Australia.

Thursday 3 July. The sun rises and Sydney shines in the early morning light. From the window of the flat we can see little caterpillar trains scuttling over the harbour bridge, and the ferries criss-crossing the harbour. Grammy and Grandpa are flying back from Johannesburg and the city he has called home for so long revs into life. Four million little parallel universes rush about their daily business. Even when the Rabbi comes to talk to us about the funeral arrangements it doesn’t seem possible that one clock has stopped ticking forever. Grandpa was good friends with the Rabbi, who has a young family and kindly offers to have Talia come to his house and stay with his children during the funeral.

Friday 4 July. The morning we should have collected Grammy and Grandpa from Perth Airport is instead the day we say goodbye. We hug a plethora of people we hardly know, the Rabbi sings a heartfelt lament, then we drive out to Rookwood Cemetery in a black stretch limousine in the pouring rain. The wet clay soil sticks to our shoes and I can hardly tell who is there for the drizzle and the large umbrellas which hide everyones faces. Grandpa’s simple black coffin is lowered into the grave dug deep beside that of his beloved first wife and we shovel the clay over him like a blanket. We collect Talia from the Rabbi’s home, where she has been very happy despite it being the first time she has ever been left with strangers. In the evening, we eat with Grammy, her children and grandchildren who live in Sydney. From Grandpa’s side of the family there is only Uncle Peter, Daddyfeatures, Talia and me. We talk as if he was still with us. He would be marvelling at how much Talia has grown, how she crawls now and pulls herself up to stand. He was longing to see her walk.

Saturday July 5. The day that should have been the baby blessing. We all go to Grandpa’s synagogue. It’s Orthodox, unlike our own progressive community, and the men and women sit separately. It’s the first time I’ve ever been to an orthodox service and it is both familar and strange all at the same time. At the end of the service they sing my same favourite song that our congregation in Perth sang the week earlier. It felt like a bookend, enfolding the week and tying it all together at the same time. I can’t quite explain it but it just felt right. Even though we would be far away, the bonds would still remain.

On my birthday this week I received a beautiful email from my mother, and I suddenly realised that there is so much more to our relationship than I was aware of before I became a mother myself.

“About this time 38 years ago I was trying not to panic and people were saying’you’re doing well’ but I didn’t know whether to believe them or not. Another half an hour and you would be there all bloody and with a slightly squished head but I loved you on sight and have never stopped.”

Needless to say she is a very doting Nana too.