How to play?

Play has become our main focus now that we have conquered eating. I think that Tobes is definitely getting frustrated and bored and we are trying everything we can think of to find things that will grab his attention but we are struggling. One of the things we have discovered is that Toby enjoys the rough play that might be typical of a normal toddler - his face lights up when I hold his hands to bash his blow-up ball or when I shake his legs really quickly so that he shakes all over - its even better when he's lying on the bed after his bath. He's quite good at hitting his hanging toys but his enjoyment of these only lasts a short time before he's shouting and showing he's unhappy. We have tried to photograph the look that comes over his face when he's enjoying the shaking game but the camera doesn't quite capture the way his eyes light up and we can almost see the old Toby in his face. The picture shows him on the bed after his bath when I am shaking his legs - he is almost smiling - this is the closest we have seen to a smile since Easter Sunday when we enjoyed lunch and the afternoon with Grandma and Grandpa.

Recently we have noticed Toby is having more sudden jerking movements - he will suddenly turn his head very quickly to the right and hold it there for a few seconds before coming back and carrying on with whatever he was doing. This was a bit tricky to manage in the bath as he ends up putting his face under the water but we are a bit more prepared for it these days. A new jerking movement has started this week in which Toby looks as if he has had a sudden electric shock - his whole body moves and his eyes take on a rather surprised look. We are not sure what these jerks are - there is no sign of altered consciousness and he carries on with his activity. We have an appointment with the Community Paediatrician this week so maybe she can shed some light on the movements.

Toby asleep on the floor in the afternoon. Sometimes he just drops off wherever he happens to be.

Night time sleep is still a problem. Toby is now waking around 3.30am every night (well morning really) and generally doesn't go back to sleep until about 9am, having had his porridge or weetabix at 7am. I don't think its hunger waking him - I tried putting his last liquid feed on at midnight rather than 11 but he still woke early - this time at 2.30am and he can't have been hungry. He could be uncomfortable but changing his position doesn't result in him returning to sleep. He does seem to need more sleep than he gets when he wakes at 3am but he just isn't able to sustain sleep throughout the night - this morning Tobes woke at 3.30am, went back to sleep at 9.30am and woke up at 12.15pm for lunch. I am sure he would feel much better if he could get this sleep all in one chunk. It would be so much better for everyone really if we could find a way to help him sleep until at least 6am - Martin and I are rather tired and even Mat is being disturbed at times. I am really not keen on trying sedation - he's on enough drugs as it is so we need to find ways that he can use up more energy during the day.

Toby fell asleep in the standing frame during physio last week! He still doesn't like the standing frame but will tolerate it for about 15 minutes at present.

Toby and Daddy in the morning!

Toby finally had the MRI and CT scan on Friday. He was really good and coped well with being starved (he had to have a general anaesthetic for the scans) but it was fortunate that he ended up being first on the list in the morning so he only had to go without food for a couple of hours. After being brought round from the anaesthetic Toby slept for another 1.5 hours - we sat next to him and read the newspaper for the first time in months whilst waiting for him to wake up. On the way out of the hospital we stopped by the ward where Toby spent 16.5 weeks between leaving PICU in April and finally being discharged home on 1st August. It was lovely to see some of the nurses we had spent so much time with and they were pleased to see Toby was looking so well. We will wait for the results of the scans to find out whether Toby can be put forward as a candidate for cochlea implants.

We have a new routine of getting washed and cleaning teeth each morning. Toby seems to quite like dipping his hands in the water but he isn't so keen on cleaning his teeth.

It seems that we will be going to the Rehab Centre from the week of 20th Oct. I am waiting to find out what we need to take with us and what will be provided - they have said they will provide Toby's food but I might take his meals with us each week - I spend so much time cooking different casseroles and other dishes for him and I am quite keen that he continues to get the variety of fresh food that he has been having. I am sure their chefs are competent but I'm not sure if they are familiar with Annabel Karmel's recipe books?!! I also need to control the amount of fattening foods he has as he is so very big for his age - when I cook I know exactly what is in each meal. He does still have some treats though - this week we introduced Toby to Syrup Sponge Pudding and Custard and he ate this pudding with great enthusiasm!

Lisa xx

Poorly Tobes!

Poor Toby has had a terrible cold for 10 days now. I went down with it two weeks ago and inevitably I guess Toby developed it about 4 days later. Unfortunately it has gone straight to his chest and he is on his second lot of anti-biotics and steroids to strengthen his breathing and stop the wheeziness. He is still determined to eat though and we have only had one day of resorting to the liquid feed when Toby was coughing and sneezing so much that he couldn't swallow quickly enough before the next sneeze or cough would come and much of the food ended up all over me! He is doing well with eating despite the cold and the Speech and Language Therapists who came to assess his swallow this week (!) were happy that he could continue! Toby did fall asleep half way through his lunch whilst the SLTs were trying to assess him unfortunately and so they are coming back next week to continue and to look at how he might work towards taking liquids orally. We are going to start trying yoghurt and thickened liquids off a spoon and playing with a cup to see how he copes.

Toby's sleep pattern has been even more disturbed than normal and I have had some very early mornings - 1.45am has been the earliest so far. Lucky Tobes can catch up on a bit of sleep during the day but when he's asleep its my chance to catch up on things.

I think that Toby is getting bored. Although he has been unwell this week and may be a little tired and grumpy because of this, Toby has also been shouting and seems quite unsettled in the afternoons, generally when we have run out of things to do. It is really hard to find ways of engaging his attention - he's not really willing to touch items although we do try offering him different textured toys and objects and we hold them against his legs and arms as well as his hands. He still seems to enjoy going out for walks - I think the different sensations of the air and the movements of the buggy give him some stimulation. So we tend to go out twice a day if we can - I'm getting to know the local streets quite well! I guess being bored is quite a good sign for his cognitive functioning and we should see it as improvement but we need to find ways of responding whilst he's wanting stimulation.

The physiotherapist brought Toby a standing frame this week - now we have a monkey and a bee. We need to try and build up to an hour a day. Toby is not overly impressed with this new piece of equipment and shouts and cries loudly as we put him into the frame. He did calm down after about 5 minutes today and we managed 15 minutes in total so not too bad.

A bit red faced and not very happy whilst he's in the frame and rather relieved to be out of it and back on Dad's lap afterwards!

After talking with the mum of a young boy who spent 9 months in the rehab centre we have decided to try it out as this seems the only way to work out if its going to be helpful. The centre have told us that the bed will be available mid October so it looks like we will be off again soon. Martin and I will probably split the week between us and we will bring Toby home each Friday and return to the centre on Sunday evening. I'm hoping that the centre's therapists will be able to help us find ways to reach Toby and to build some kind of communication with him. It would be really good to be able to find a way of playing together again.

The MRI scan was cancelled by the hospital the day before we were due to go - this was fortunate really as they would not have given Toby a general anaesthetic with his wheezy and bubbley chest. We are waiting for a new date to come through - hopefully before we leave for the rehab centre.

The last two weeks have been rather tiring with so many disturbed nights and Toby being a bit more demanding that in previous weeks. Martin managed to find an activity gym on Ebay that didn't depend on lights and music as all the new ones seem to do and Toby does seem to like hitting out at the toys hanging down and the sliding pieces on the bar at the side. It always looks as if he is looking at things but we haven't had any sign that he can actually see anything so far.

Lisa xx

1 month since discharge

His new haircut - such a grown up Toby!

Food again!...

After changing to the baby formula milk Toby started waking up earlier than usual so after two nights of getting up at 2.30am we decided to try replacing his 10.30pm baby formula feed with the complete liquid feed to see if it was hunger that was disturbing him. He has slept a little later (waking now between 4 and 5am) since making this change so we will stick with it as long as he doesn't put on too much weight - the complete feed is higher in calories than the formula milk. This week Toby has also increased the amount of solid food he is eating at each meal so I think stopping the complete feed during the day was the right thing to do as he is hungrier and consequently eating more but maybe not quite enough to get him through the night.

This is Toby in the Bee Chair - we only use this for meals at the moment so he knows what to expect whenever we put him in the chair. It holds him in a good position to eat although its not the easiest thing to get him in and out of as it has many straps and adjustable parts that have to be done up and undone each time. The chair height is adjustable so it can be lowered to the floor or raised up to the height of the breakfast bar.

Toby is having weekly physio sessions with the physiotherapist from the Child Development Centre and we have lots of exercises to try and do with him between sessions. Toby shouts alot during physio but he will generally tolerate the positions for a while. Mat has been helping out - here Mat is encouraging Toby to stay in side lying and to let his head drop down to the mat.

Mat finally had his hair cut today (I think!) - just in time for school tomorrow!

I am not really doing an official physio exercise here but just playing with Toby in the morning.

Toby still enjoys his baths although he doesn't close his eyes and lie back in the same way as he did whilst he was in hospital - I think that then the bath was helpful in reducing the pain from the increased pressure in his head - our GP wondered if the drop in blood pressure that happens in a warm bath led to a similar reduction in the level of pressure in Toby's head and thus gave him a little relief from the pain. Its very hard to remember the pain that Toby seemed to be in for so long when he was in hospital - Martin and I tried constantly to work out what was causing the pain and to make Toby more comfortable but we didn't know that hydrocephalus was a potential consequence of meningitis until it was finally identified through a CT scan. Hopefully the shunt will continue to work effectively as Toby is so much more settled and hopefully more ready and able to engage in the tasks necessary to acquire new skills.

We visited the Rehab Centre yesterday. Despite this visit, it is still quite difficult to decide whether and when Toby will benefit from going as we really only saw buildings and empty rooms. We didn't have the opportunity to speak to any therapists but I think that even if we had, it would have been difficult for them to discuss how they might work with Tobes without having met and assessed him. We did speak with a doctor who immediately said that Martin or I would be able to stay in the same room as Toby if he does go to the centre. The admin officer showing us around was less sure about this but the doctor was quite firm in her belief that this is completely appropriate for parents to do when little ones are admitted. This was a big concern of mine as they had originally said we couldn't stay in the same building as Toby and we weren't prepared for him to stay without one of us so at least this problem has been resolved. I think we may only be able to find out if its the right thing for Toby by trying it out. We would stay at the centre from Sunday to Friday and return home each weekend. The doctor we spoke to suggested we have 3 months at home to recover from hospital and then go to the centre around Christmas. We are hoping to talk to a family whose son has undertaken a programme at the same centre to find out what their experiences were like and hopefully this will help us make a decision.

Play?

Toby has been hitting out at the toys that I have hung from a string above him and also hits and knocks over a blow up toy - we are not sure if this action is deliberate and he will hit out when the toy is not in place but watching him it seems that he hits out less often when the toy is not there so maybe he is trying to knock it down.

So after our first month at home we are managing and Toby seems to be settling and making some progress. We are so pleased that he is eating solid food - the next step will be to start tackling liquids but we will wait for advice from the SLT around this as I think we will need to start with thickened liquids and I am not sure how best to offer these to Toby. Sleep is ok although I am up and down quite a lot to reposition him and check on him when he wakes early in the morning. Tobes is also showing some signs that he might be able to start playing which is good. We are beginning to reduce some of the medication that he has been on - much of it was increased in the attempt to overcome the problems that were actually being caused by the hydrocephalus so hopefully some of this can be significantly reduced. When we were in hospital we were always shocked by the amount of waste incurred by the disposal of so many syringes and other bits of equipment. After a month at home my hands are falling apart from all the washing up and I am tired of standing at the sink numerous times each day - oh for disposable syringes!!

Two-way communication is the thing we are really hoping for and it just seems so hard to find a way to start without vision or hearing. Toby is going to be assessed for cochlea implants so this may be one way of communicating if he is suitable - he is having the MRI scan next week as part of the suitability assessment so we will wait and see if he passes this first hurdle.

Lisa

Hair cut, food and sleep

Toby had his hair cut today! With short hair his cheeks look really chubby but he looks so grown up - not my little baby anymore. A hairdresser friend of my sister Jess, offered to come round and cut Toby's hair after seeing the pictures of my two long haired lads on the blog last week. Toby shouted a bit through the experience but we got there in the end. Mat has refused to have his hair cut yet - there is still a week to go before school starts and he's holding out as long as possible.

Toby's eating is continuing to improve. We shocked the team at the Child Development Centre last week when we told them that he was eating 3 meals a day. The Speech and Language Therapist had not been able to make a time to assess Toby's swallow until September. They had not expected us to move beyond swiping small amounts of pureed food on Toby's lips until this assessment. We explained that Toby was setting the pace and that when he began to communicate his desire for more food we could not ignore this first piece of communication. I had spent time with the S&LT in Hospital and felt relatively confident in moving forward so we have progressed and Toby is doing very well. His gag reflex is active and he coughs and clears any little bits of food that catch him out but this doesn't happen very often. He is eating so well that we have, today, stopped the special liquid feed that he has been on for the past couple of months and replaced it with a smaller amount of ordinary baby formula milk - formula rather than cow's milk to make sure he gets all the vitamins and minerals he needs. I did speak with the dietitian before making this change and we have reduced the amount to that which he would normally have needed as an 18 month old toddler. Toby managed to put on over 0.5 kilo (about 1 lb) in the last week so we need to slow down his weight gain and the baby formula has a less calories than the complete enteral feed. So now Tobes is eating porridge or weetabix with fruit for breakfast and I am making little meals for his lunch and tea - he is managing quite lumpy textures now as long as they are fairly soft.

It has been really good to be able to feed Toby real food again and he is beginning to tell us that he is hungry - he starts shouting about half-an-hour before meal times and then goes very quiet and starts opening his mouth as we put him in his chair. He is definitely learning this routine! We are quite restricted by his mealtimes now though and have only a couple of hours when we can go out as we need to be able to put him in his special chair for each meal. For the moment we can manage this routine as the furthest we go is a walk round the park or to a friend's house only 5 minutes away.

Sleep is still variable but still much better that it was in hospital. Toby is still waking around 4am each morning but he is fairly content to lie in his bed until 6 and I pop in and out to reposition him and check he's ok. We have put this black and white mobile above Toby's bed as one of the neurologists said that we should continue to stimulate his eye sight as it is possible that his brain may be able to make new connections and, in her experience, some children with similar brain injuries as Toby have regained some sight in the 12 months after the illness. She said she cannot predict whether this will happen for Toby but it is a small possibility. So we will wait and see.

15 second video of Toby in bed - he's not asleep!

We still can't tell whether Toby recognises us at all. He will calm if we cuddle him if he's a bit distressed but we haven't been able to establish any kind of two way communication yet. We are beginning to recognise Toby's different shouts but whether he is able to take in anything about his home or us is difficult to tell. He has done really well since he was discharged only 3.5 weeks ago but it is still upsetting that he hasn't shown any sign of knowing us since the night before he fitted 22 weeks ago. We keep on hoping that he has some sense that we are with him.

Lisa

Toby and Mat

Couldn't resist putting on these photos of the two boys - both in need of hair cuts!

Thank you to everyone who has left a comment - its really nice to find that people are reading our blog and I really value everyone's support. I get quite excited when I see someone has left a comment - much to Martin's amusement!

Lisa xx

More food!

The photo above where Toby is lying on Martin is actually part of Toby's physio exercises - he's working on his neck and head control as well as stretching out some other muscles.

Here's a photo of Toby asleep in the garden - the weather hasn't been great this week so we have taken advantage of every bit of sun. We really do need to get Toby's hair cut - its rather wild at the moment and the two shaved patches don't help. Maybe we will take Toby and Mat to the hairdressers next week - Mat's hair is far too long for school in two weeks time.


This week has really been focused upon food! Toby has been really enjoying the meals we have given him and will just keep on opening his mouth for more. This makes it quite tricky to decide when to stop - I don't want to leave him hungry but equally I don't want to make him feel bloated and uncomfortable. Trying to judge how much he can or should eat is tricky as we have missed 5 months of development - Toby has grown quite alot over the past 5 months despite the infections he developed whilst in hospital but it feels like we have jumped from having a 12 month old baby to a toddler of 17 months - in terms of his size anyway. I still think of Tobes as my baby - in many ways he has gone back to early baby days but he is more of a toddler in size. A similar thing has happened a bit with Mat - I still see Mat as a young boy in my mind but between March and August Mat has become a relatively independent adolescent but I missed out on the process of this development and frequently get caught out as I have to readjust to this new, grown up Mat.



Toby's sleep pattern is rather variable still - on some nights he will wake in the early hours of the morning and lay in bed talking to himself and sucking his fingers, other nights he will sleep through until about 5am. We are trying to limit his daytime sleep to short naps but it always feels wrong to wake him when he sleeps so soundly during the day.

We are struggling to find activities for Toby - he enjoys being outside and seems to like going for walks - I guess the wind and the feeling of movement in the pushchair is quite stimulating for him. We have gathered together his more tactile toys that might be interesting for him to feel and added these to the sensory bag that one of my team members, Caroline, put together for him whilst we were in hospital. He doesn't show obvious signs of enjoyment but does go still at times, suggesting that he is taking in this new information. We need to buy or build an arch that we can hang toys from - we have used a piece of string tied between chairs at the moment and he does seem to be hitting out at the toys hanging down. We have had visits from members of the sensory impairment team and Portage Service who have said they can lend us some toys that will hopefully be more suitable. Martin is planning to build a resonance board - I think this is a piece of wood suspended on legs that Toby can lie on and feel vibrations of sound. It will be interesting to see whether Toby responds to music in this way as he always used to enjoy music and we used to sing all the time - well I sang and he clapped. We also need to get Mat playing his electric guitar with the amp on the resonance board to see whether Tobes enjoys heavy rock rather than nursery rhymes!

This short video clip shows Toby eating dinner - a bit messy but he's doing really well considering we only began giving him food again 2 weeks ago.




We are off to the Child Development Centre today to receive their report and discuss goals and the support they can give in terms of physio, OT and SLT sessions.



Lisa

20 Aug

Our first two weeks at home

It is such a relief to be home. It is hard to bring Toby home to his bedroom and to his toys and to all the things that remind us of his first year before the meningitis but to be together again as a family under one roof and to be able to do very ordinary things like cleaning and using our own bathroom is wonderful. We're unpacked and beginning to find places for the extra equipment and supplies that we now need to support Toby at home. We had already faced the trauma of removing his cot from his bedroom some weeks ago when we made the decision to have an electric bed installed, similar to the one he used in hospital, as this made it possible for me to lie next to him on the bed and for the bed to be tilted when he was asleep during a feed time.


Toby has slept fairly well since we arrived home, generally falling asleep around 7.30pm and sleeping through until around 2-3am. Not sure why he's waking regularly so early each morning - wondering if he's had enough sleep at that point given that he's not physically active during the day. He also has no time cues as he can't see or hear. Over the last few nights Toby has been fairly content to stay in bed awake at this time - he shouts a bit and sucks his fingers but is not distressed so after initially checking that he's ok and repositioning him, I go back to bed and pop back and forth if his shouting gets a bit loud and more demanding. I do wonder if he's hungry but he does have a feed at 10pm so he should be ok. He goes back off to sleep again around 7.30am after his morning feed and stays asleep for a couple of hours before getting up for the day. Unfortunately we don't go back to sleep along with him so our day is rather long at the moment.

This photo shows how much more flexible Toby is since the shunt was inserted on 22nd July. Toby is so much calmer and able to move his arms, legs and head so much more since this surgery, we just hope that he will not suffer the complications that can accompany shunts such as infections and blockages - he has got to have some good luck at some point because nothing else has gone his way yet.

The biggest achievement since we came home is Toby's eating!!! He's doing really well taking solid food orally again. We had periodically tried him with very small amounts of pureed fruit or savoury food just swiped across his lips - his success was variable and we had had some scarey moments when he had choked and then vomited everywhere on a few occasions. Toby becomes very distressed when he vomits as he seems to find it very difficult to clear the fluid from his throat and so we have been given a portable suction machine to keep at home just in case we have a problem. Over the last week however, Toby has gone from strength to strength with his swallow and eating. We started with applying strongly flavoured lip balm numerous times each day - he began sucking his bottom lip and opening his mouth like a baby bird when he smelt the fruity flavour.



Since then we have progressed to porridge in the morning and then some dinner in the afternoon - only half a small jar of baby puree and some fruit puree at this point but this is so encouraging I am reading Annabel Karmel again to start getting ready to make him some good home cooked meals.

He must wonder what has happened to his food and milk over the last 5 months - it must be strange to be fed directly into your stomach.



We have had numerous appointments this week and last with nurses, health visitors, physio, occupational and speech and lang therapist, sensory impairment team members, dietitian and portage. Also waiting to receive report from the residential rehab centre who assessed Tobes on 31st July and were very positive in their belief that they had much to offer him. We plan to visit the centre on 2nd Sept to try to decide whether splitting the family up again and moving Toby to another unfamiliar environment will be beneficial at this stage - it may be more useful at a later date when the progress we are making at home has reached a plateau.



Lisa
13 Aug 08