Blog 50 - Preparations for Nick's Next Op

This coming Tuesday, the 9th of October, Nick is going into hospital to have his Lefort III Mid-face Advancement using the RED (halo) operation. Melissa had this done two years ago.

The same procedure will be used for both children but for different reasons. Melissa's was primarily done for her severe sleep apnoea, Nick's will be done because of his severe proptosis (bulgy eyes). (His eyes could pop out at any time, and they are red all the time which could be causing damage).

Earlier in the year Nick had a CT scan on his skull and we heard nothing from the hospital until July. We received an appointment to see the plastic surgeon on the 10th of August. We were expecting him to say that he'll do the op next year in 2013 when Nick is 9 years old, as that was the age Melissa was...but he said he wanted to do it straight away and he pulled out his booking book. He even re-arranged some bookings to fit Nick in! This news sent Nick into a panic attack and we had to calm him down. We also were quietly shocked but staying strong for Nick. The op had arrived!

It took a little while to come to terms with the news. Then we had to think about what we did to prepare for Melissa's. We went shopping for front-opening shirts and bought Nick some toys to take with him to hospital.

I had to apply for 4 weeks leave from school which was dependent on the hospital booking letter. So we waited impatiently for that to arrive. It did arrive. There was the physical evidence in writing...a few butterflies in the stomach. Then the hospital rang to confirm...a few more butterflies in the stomach! After which Nick had 2 pre-op dental appointments - one to take x-rays and to put in spacers between his top teeth, and the second to take a mould of his top teeth to make  the plate that will be used as part of the RED. Earlier in the year he had moulds taken of his top and bottom teeth to see how much recession was happening with his jaws. When he had them done the first time, Nick had a panic attack and had to be held down. This last time he was much calmer.

This weekend we are encouraging Nick to eat as much as he can too as he will lose a lot of weight over the course of the procedure and he is already very skinny due to his Coeliac Disease.

We have been talking to Nick about the operation to prepare him, but not freak him out. I don't know how he is going to cope.

It is interesting that Melissa does not remember very much about her halo at all. She has blanked most of it out of her memory.

Since Thursday we have kept Nick at home away from people. We don't want him getting sick or the operation will be cancelled. One of Nick's earlier ops was cancelled due to sickness so we are not taking any chances. He has had some hay fever so he has been using an antihistamine nasal spray. It's hard not to feel paranoid. Nick seems pretty calm but has been exhibiting some extroverted behaviour - being our family clown.

Friends have started to pray for Nick and our church family will be praying for him tomorrow collectively in church. God is watching over Nick and is in control of the situation. I am feeling calm and at peace.

Monday we will pack our bags.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission

Blog 49 - I'm Now Up-to-date

Well I started this blog in July with the intention of telling my story, to help people, maybe even inspire people. To tell you that no matter the hardships in your life you need to keep going. Have faith in God and never give up. Take one day at a time, even one hour at a time when life is at its toughest.

I have given brief recounts of the major events that have happened to me and my family up to today - the 6th of October, 2012. From now on I will talk about ancedotes from the past, and things that are happening currently.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission

Blog 48 - Jess's School Accident

Two children were having a play fight with their lunch boxes outside the Prep room. Jess unwittingly stepped in between them and was hit on the face with one of the lunch boxes, leaving a red mark. She received first aid.

For the next month she didn't want to go to school, she was being naughty at school and at home, and she kept saying at school and at home that the child had hit her on her face. Also, at her speech therapy she was showing aggressive behaviour with the toys (she made them fight). At home she no longer cuddled and kissed her favourite toys.

We tried to talk to her about what had happened and tell her that she was safe at school but again with her intellectual impairment we could not reason with her.

In desperation we rang DSAQ for advice which they gave. They were wonderful.

DSAQ sent us some visual stories to use with her. The child who hit her gave her a hug and drew her a picture. Of course that child had long ago forgotten about the incident. Also we were able to break the cycle by going to the beach for holidays, getting her away from the situation. We noticed at the beach that she started cuddling and kissing her toys again.

She hasn't been back to school yet since the incident so I am praying that she will be fine. Nick and I will be in hospital when she goes back to school so we will most likely have other issues to deal with. Hopefully the hit on the face will be forgotten.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission

Blog 47 - Jess at Mainstream Prep

Jess has been mainstream Prep now for 3 terms (8 months).

She has been verified as having an intellectual impairment. Her IQ test came out as between 56-67. Intellectual Impairment is 70. Jess has poor fine motor skills so it was hard for her to do the activities that involved drawing (she is having OT fortnightly to help her with her fine motor skills). Jess's IQ will again be tested in Year 3. This labelling means she is under the care of the Special Education Unit at the school and will receive extra support.

Our personal educational goals for Jessica are that she is:
a) achieving her intellectual potential.
b) enjoying school.
c) accepted and has friends.

So far these goals are being attained.

Jess had an IEP which came up from Pre-Prep at the ECDU and she is starting on an EAP now she has been verified.

Jess is happy to go to school most of the time. She understands 'school life' and follows the expected routines and she sits on the floor and listens etc. She joins in most activities and loves movement, dance and singing activities. Jess has learnt her ABCs, numbers, months of the years, days of the weeks, shapes and phonics from songs. Jess's talking has improved amazingly - she speaks in sentences and is well understood. The children in her class adore her and 'baby' her - the teacher has to tell them to stop doing things for her. They even argue over her. Schoolwork is modified for Jess if she is not able to do what the others are doing. For example she can tell a story but does not have the hand control or spelling ability to be able to write a story, so it is dictated. The teacher has an Ipad which has activities on it just for Jess. Visuals have been put up in the room to help her behaviour. A behaviour plan has been implemented at school and is backed up at home. Jess does do 'runners' so the classroom is locked and visual strategies are being put into place to help stop her from taking off.

We were having trouble with Jess before school going to the out-of-bounds playground and sandpit (her two favourite things), and then we were having to physically remove her from them as she didn't want to leave.... so she now goes to her classroom and plays games as soon as she gets to school. Problem solved.

We cannot reason with Jess....so we have to put in strategies that she will understand. She is a visual learner (the Guidance Officer confirmed this with the IQ test).

So though there have been some challenges this year, we are learning how Jess works and finding solutions to these challenges.

The GO told me that Jess is in the right place for her to be...and as long as she is coping that is where she will stay.

Go Jess! We are so proud of her :)

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission

Blog 46 - Op #2 for Jess - 5 years - Tonsils and Adenoids

Jess had a sleep study which showed slight sleep apnoea. It also showed that Jess was a very restless sleeper - which we already knew! She had been a restless sleeper from early on in her life. Jess would often move up and down her cot, then up and down her bed. When we first put her in her bed we found that she would fall out of it so we needed to put up a bed rail....and she would often leave her bed and be found on the floor or in Melissa's bed.

In the morning she would wake up very tired with tousled hair.

The Respiratory doctors suggested that she have her large tonsils and adenoids removed. It was hoped that this would help her to get more oxygen into her lungs, and help her to sleep better.....but as she would not be rated as a Category 1 it would be best for us to go privately, as the public waiting list was very long.

We took Jess to see the private ENT doctor. He agreed with Respiratory that she needed her tonsils and adenoids out - they were taking up half of her throat - so we made the operation appointment for the following Easter break holidays.

The time soon came and Jess went into hospital for her op.

Jess had to fast which I was really concerned about because Jess does not cope with change in routine. We didn't know how we would get her to understand that she could not eat.

But God came through and answered our prayer. We were rung by the anaesthetist who told us that she could have breakfast as it would be an afternoon operation. This solved the problem we had foreseen.

We went to the day waiting area and she sat in her bed for a while and played. We had brought her some comfort toys. She soon was bored and we went to the playroom which keep her entertained.

Back in the room we were still waiting. The other children in the room had been on IV infusions and were eating....so of course Jess wanted to eat! We had to physically remove her again from the day area so she could not see the food - I was not happy about the fact that they put her with children who were eating - how unfair on any child!

It came time for Jess to go in for her surgery and she went to sleep very quickly and calmly. We waited and it was only about half an hour or so before the doctor came out to tell us that everything had gone well. The tonsils and adenoids were bigger than what he had thought and were taking up about three-quarters of her throat. She could go home the next day. Too easy!

Jess woke up and took her pain medicine and antibiotics well.

She soon started doing her repetitive comfort behaviour - putting pegs in and out of a bucket over and over again. Then taking pen lids off and putting them on again over and over again.

The next morning Jess continued these comfort activities. She ate quite happily - Jess doesn't seem to feel pain at the same level that my other children do. And we went home.

Once we got home Jess continued to eat quite happily for a couple of days and then she decided that she did not want to eat - we think the pain finally sunk in. We tried to coax her with all her favourite foods but she refused. We kept the pain medicine up and forced her to drink water.... She would not drink anything else. Jess also decided that she would only listen to me and not Joe my husband....which meant that after I went back to school I had to ring home nad tell her over the phone to drink.... She was being very stubborn.

This week was a scary time as we didn't want her ending back up in hospital. And though well-meaning friends gave us lots of suggestions they had no idea what we were dealing with - we had a stubborn child with DS/intellectual impairment, who only eats a small range of foods and who will not eat anything else no matter what is offered....  This situation provides more challenges then for the regular child who will happily eat anything soft, cold and sweet. Not our Jess...

Again with her intellectual impairment we could not reason with her.

We had a paediatrician appointment and the doctor noticed that she did have an infection in the back of her throat which is probably the reason why she didn't want to eat....so Jess was put on more antibiotics. Soon after she went back to eating.

The operation was successful as she is a better sleeper and even though she still wakes up with tousled hair, she is not tired.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission

Blog 45 - Jess starts Kindy and then School

In 2011 it was time for Jess to start Kindy (also called Pre-Prep). She was with the same teacher that Melissa and Nick had and the teacher was enthusiastic about having her. With Federal funding Jess was able to have an aid to help her.

Jess enjoyed going to Kindy and being with the other children. At times she would show defiant behaviour and she would wander off. But she was able to follow the classroom routines and she was getting used to 'school' life.

Jess went to Kindy for a 5 day fortnight. She also went for two half days to the ECDU at the Special School. Jess enjoyed having the two teachers at the ECDU at her beck and call and had them wrapped around her little finger. There were things that we knew she could do that she wouldn't do at the ECDU unless she had help.

We began to notice one main difference between the two settings. When Jess came home from Kindy she was communicating verbally with us....when she came home from the ECDU she wasn't - she would use her Makaton sign language. Upon querying the ECDU we found out that the other children were non-verbal...so that's what she was. Another behaviour she picked up from the ECDU was hitting as one of the other children was a hitter. We weren't happy about that.

Jess needed to be around verbal children and appropriate behaviour. She modelled her behaviour on what the other children were doing.

Towards the end of 2011 we had to decide what to do for Prep in 2012. This was a huge dilemma. Where was the best place or her? Should she go mainstream, should she go to the ECDU, should she do part-time in each, or should she repeat Kindy????

We deliberated for a long time. I spent a lot of time praying for wisdom. I even made a pro/con checklist for both settings. We wanted to make the right decision. This was really foreign for us because with Melissa and Nick there was no decision to be made - they were both intelligent so they were going mainstream. Our concern with them was 'Would they be teased and would they fit in because of how they looked?'

Jess on the other hand had suspected intellectual impairment so could go to either settings. It was up to us.

After consultation with the Kindy, the Guidance Officer at the SEDU, having a tour of the Prep rooms at the Special School, and then talking to the Special Education teachers and the Principal at my school where she would be going mainstream, we made our decision.

Our main concern was based on the Kindy's comment, that they didn't think she would cope in mainstream because of her defiant behaviour at transition time and her running off. They thought she should repeat Kindy. The Special School GO disagreed with this. The GO thought that it would be better to have a repeat year of Year 12 if necessary so she could have more job training. The GO believed that another year of Kindy would not achieve a lot.

Our decision was...that we would sit on the fence and put her part-time in mainsream Prep (3 days a week) and part-time in the ECDU at the Special School (2 days a week) and we would basically see what she told us by her behaviour where she would like to be. We didn't want to unenrol from the Special School in case Jess didn't cope in mainstream.

Well it didn't take long for Jess to tell us where she wanted to be!

In the first week of school she went to Prep for 3 days at my school, and then she went for one day at the ECDU, due to a holiday. The next week she happily went to Prep and then on the Thursday when it was time to go to the ECDU she didn't want to go! So we didn't make her - we enrolled her full-time in mainstream. She had told us where she wanted to be!

And I must say she looked very cute in her school uniform. My baby was growing up and in school. I had to teach on the first day of school, so I didn't get to take her to her room but I checked on her later on in the day and she was doing well.

Mainstream is the best place for Jess to be.

Here she is after receiving a Superstar Award on Assembly.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission