Monday, 4 July 2011

Hope- a snapshot

There's lots I could and should update about the last couple of weeks, but just thinking about it makes me tired. In short, Hope has had a skin and muscle biopsy in the hope we get get some answers (or not) about her condition. Shortly after this Hope was very poorly and was admitted to hospital with very high lactate (5.8 :""(  ) it seems she's been aspirating and aquired a chest infection, though at one point suspected pnuemonia! She needed IV fluids, antibiotics and even oxygen (she's never needed that before). She's home now, but not her usual happy self and I'm sad and worried about her.

Anyway, unbelievibly (to me lol) she's due to start nursery in September. So I've been finishing off my parental contribution to her statement this evening, and I thought it provided a nice snapshot of where Hope is upto these days. It also perhaps shows me as a neurotic, fussy, overprotective, over anxious parent. Oh well :O)

My Child's early years

We were aware that Hope may have some kind of disability, before she was born, based on brain abnormalities picked up on scans. She spent a short time in special care due to her low birth weight and for observations to be made.

Hope left hospital at one week old, and seemed to be developing 'normally' until she began having fits. This was initially misunderstood by her consultant, and by the time epilepsy was diagnosed, Hope was in a constant state of epileptic activity. She'd lost all previously gained motor skills, all of her little personality and even her sight.

Hope began epilepsy medication, and though this gained some control over the fits, the medication left Hope very drowsy for a long time. Hope is much more accustomed to the medication now, and gradually overtime her personality came back. She still has seizures most days, but they are much better controlled. A lumbar puncture carried out at 6 months of age, suggested that Hope may have a mitochondrial disorder. Hope is now being seen at the John Radcliffe and we are awaiting results from a skin and muscle biopsy.

Though I'm aware that Hope is extremely behind in her development, she never ceases to amaze me. She works very hard to gain new skills, and each little new thing she learns is a huge triumph for us both.

Hope is seen and supported by many. These include her consultant, Dr Chinthapalli, her epilepsy nurse, her physiotherapist, occupational therapists, her portage teacher and koala’s key worker.
Hope has been attending koalas since she was less than one year old (I am sorry I can’t recall), and having portage at home since March 2010.

What is your child like now?

General health

Hope has epilepsy that is kept quite well controlled by vigabatrin. She's currently on 900mg twice daily (given in yogurt) but this dosage is based on her weight and seizure activity, so changes regularly. Hope also has a rescue remedy of rectal diazepam.

She's generally quite well, though recently she's had a succession of chest/throat infections. Hope can become dehydrated (she's not a big fan of drinking, and even less so if she's poorly) and due to the nature of her possible mitochondrial disorder (high lactate) it's important for her to be well hydrated. Therefore it’s important to observe her fluid intake, plus watch out for signs of dehydration. And if it's suspected she needs to be admitted to hospital for IV fluids.

Hope does suffer with constipation. She is currently having half a sachet of movicol in the morning. But we also use a pessary if necessary.

Most recently, Hope has undergone a general anaesthetic for a skin and muscle biopsy (on her leg) at the John Radcliffe. We hope that the results from this may shed a little more light on Hope's condition.
Following this surgery, Hope was admitted to the GWH. She'd remained very sleepy and had been aspirating and her lactate levels had become very high.  She needed Oxygen, IV fluids and antibiotics.

Physical skills
Hope can roll, though sometimes gets an arm stuck. She can lie on her tummy and raise her head for a few minutes at a time (if she’s in a good mood and has something she likes to distract her). She has good head control. She is now able to sit by putting weight through her arms, though she's still quite wobbly. She can on a good day sit for a couple of minutes, though lacks the skills to save herself when falling. However, recently I've witnessed that she's making an attempt to.
With the support of a person, and/or a therapy ball, plus her splints Hope can stand.

Hope can grasp objects of interest to her, and will pass from her left hand to her right.
She uses both hands to operate switch adapted toys/ communication devices.

Self help
Hope needs to be dressed and undressed. She will attempt to help by pulling or pushing her arms through sleeves.

Hope needs to be fed. She manages a mashed consistency of food, and can also eat certain whole foods eg. sandwiches, soft fruits etc

Hope wears Nappies.

Hope doesn't mind her teeth being brushed. I count very slowly from 1-10 for the bottom teeth, then repeat on the top teeth.

Hope has very curly, difficult to brush hair. It's best to tease knots out which she's in the bath and has conditioner on.

Hope needs to have her face and body washed, and also her nose to be wiped. Counting slowly to ten will reduce her stress.

Hope has a repertoire of 5-6 words. Sometimes she uses them appropriately and consistently, but not always.
Hope is a very sociable person, and is attentive when being spoken to. She will turn take and make vocalisations, and very occasionally imitate. Now that Hope's vision is improving, she will sometimes make eye contact, though often this is brief.
I believe Hope understands a few words. She's able to make choices of people, favourite toys and favourite books. Given choices, hope will give a clear response, either by a vocalisation, or a very big clear smile
Hope is able to express her desire to have a change of position/scenery/activity by saying 'OU..' (out). This is made clearer by her use of body language, whereby she will kind of arch her back ready to be lifted.

Playing and learning
Hope's favourite toys are: story time bear, Elmo, pom poms, crinkly foil and fluffies (soft material). She also enjoys playing with her switch activated toys.
She doesn't really play with other children, but loves being played with by her siblings. She enjoys being tickled and also enjoys wrestling with her brother.

Hope has a few stories that she really enjoys. These tend to be books that have noisy buttons, or are feely books.

Hope enjoys going in swings and on bouncy castles.

Hope isn't occupied by television, but she does really enjoy listening to music, especially children’s songs and nursery rhymes. She loves being sung to. Especially rhymes that have actions e.g. ‘Tommy thumb’, or ‘round and round the garden.’  ‘Twinkle twinkle little star’ will calm her if she's upset.

Hopes all time favourite Activity is doing 'row row the boat'. She likes to sit on a lap and hold hands and rock forwards and backwards. Sometimes she will initiate this by rocking when on a lap, or by saying (what we think is) 'row'. Hope knows 7 verses to this song though, and will become frustrated if the person singing it doesn't do her full version.


Hope is very much a mummy's girl, as we are very rarely separated. If she's unhappy or poorly she needs a cuddle from mummy. She has a lovely relationship with her Daddy and enjoys playing, talking and relaxing together in the evenings.
Hope has a wonderful relationship with her siblings. She gets excited when they interact with her, and has a very special and unique relationship with each of them, each of them bringing out different aspects of her personality and different behaviours. Hope also has good relationships with her portage teacher, koala’s teacher and her rainbow trust support worker. She doesn't seem to be wary of strangers, but isn't as sociable with people she doesn't know. She tends to have a sense for therapists and doctors, of whom she's least happy with.

Behaviour at home

Hope is quite demanding in attention. She's not able to really entertain herself, so requires attention. She's used to having attention all the time, and becomes upset if she's left unattended. Hope has quite a short attention span (even with her favourite toys ten minutes maximum) and will show that she's bored by whinging. She doesn't like to stay in one place for long either, so moves between various chairs, laps, floor, standing frame etc.
Hope is very affectionate, and loves to be kissed and cuddled. She will really snuggle in for a cuddle if that's what she wants. If she's tired, she will become grumpy and need a cuddle and her dummy.

 At preschool/ nursery
Hope enjoys the time she spends at koalas. She has a lovely relationship
with her key worker, and isn't upset if I'm out of the room. Hope enjoys many activities here, including messy/sensory play, water play, and painting (with her hands and full adult support). She enjoys playing in the garden on the swings and trampoline. She really enjoys going into the sensory room and using the switch activated lights/sounds. Hope does interact with some of the children- usually when they are in a very close proximity.

My general views
How do you compare your child with others of the same age?

I am aware that Hope is very delayed, and much more like a young baby- though in different areas of development this varies as to how far off she actually is of her chronological age.

What is your child good at or what does she enjoy doing?

Hope is having lots of success with switch activated toys and communication devices, and I see this as a strength and something that I want to continue with, as she's enjoying the control, and I see that it has a massive potential for the future of her learning and communication.
Hope enjoys playing with these.

She enjoys stories, music and nursery rhymes. Hope also enjoys rolling around on the floor, and playing with crinkly foil, pom poms and fluffies.
Hope loves water! She loves having a bath or shower, and loves swimming. She becomes very happy and active in the water, and is now able to stay afloat and kick her legs when she has armbands on. She has achieved ducklings’ stage one in her hydrotherapy class.
What does your child worry about?

Hope's only worries as far as I'm aware, are being left on her own.

My worries

Hope being left unattended- even sleeping I don't leave her as she's most likely to have seizures upon waking.

I'm worried about Hope's epilepsy care plan, which I think needs reviewing, but my main concern is that maternal instinct tells me when rectal diazepam needs to be given or an ambulance called.

My biggest concern is Hope's seizures (which can be very subtle) going unnoticed. I need to know the length and regularity and strength of them, so I know if it needs treating, or her meds need increasing,

I'm worried about Hope sleeping too much at school- this can be a sign of high lactate

I'm worried about her aspirating, which is something she's only recently began doing

I'm worried about her feeding. I'm the only person that ever feeds Hope. I know how to feed her, how to place the food in her mouth, when it's getting stuck on her high palate and when it needs fishing out.

I'm worried that Hope will be unhappy in her school seating. She's been very fussy with postural seating, and she's going to have a new unfamiliar chair (still undecided). Also she doesn't like to spend much time in any position.

I'm sad that Hope will be unable to tell me what's happened at school each day.

I'm worried that all of the ways in which Hope communicates can't actually be translated onto paper, but can only be learnt by spending time with her and myself so that I can translate her needs.

I'm concerned about Hope's splints (orthotics), which she'd ideally be wearing to nursery. But we have ongoing issues with them, and she regularly manages to slip her heel out of position and this rubs and causes her discomfort. They need to be checked and put back on several times a day. Putting them on is a tricky procedure in itself!

I'm very concerned about leaving Hope. I didn't let her out of my sight until she was 18 months old. I've only ever left her with her Daddy, and her rainbow trust support worker, and yet it seems I'm expected in September to leave her with virtual strangers after just a couple of half hour visits. Which I won't be! I think going to nursery would benefit both Hope and myself, but this will happen, only if I feel comfortable with leaving her, knowing that the teacher and staff know her well enough.

My child’s special educational needs
I believe that Hope will need one to one support with someone who knows her well. She will need to have a structured individualised plan to take into account all of her needs; socially, emotionally, along with physiotherapy and developing fine motor skills, which will take into account her disabilities and her visual impairment. A clear epilepsy plan will need to be in place. Hope will also need appropriate seating that she is happy with.

I believe these needs can be best met by Brimble Hill School. I believe a slow phased transfer of knowledge about Hope (from me to the staff at the school) will allow for a smooth transition.
Therefore I’d like to have much more contact with the school and the staff before I feel ready to leave her there without me. I am pleased the school have agreed for her siblings to have a visit, so they can see why I have chosen this school over their school. However, I feel that the school are reluctant for me to spend much time there other than a couple of half hour sessions. As I have said previously, I will not be leaving Hope there until I feel   they know and understand her well enough. I am aware that Hope is not required to start her formal education for quite some years, and I am prepared to postpone this if necessary.