Breasts, work and play

JAMBO!!!


Hope this update finds everyone just fine and dandy... As with previous update I’ve been doing a half decent job of occupying my free time with non internet/computer related activities and also just think highlights/lowlights is the way forward rather than boring the life out of you guys with day-by-day plays especially when I’ve gotten into a routine of seeing some clients on a regular basis.

Funny/interesting stuff from today (there was so much today I thought it would suffice!)
Soooo to start off with today, Monday, I managed to get myself onto a 3-day early childhood feeding course at the hospital and along with an entire day of learning about the world of breast-feeding were some absolute crackers harked out by the presenters/staff present:

Presenter: If there is only one small bed in the house not big enough to accommodate all 3 child, mother and father who should sleep in it?
Staff member: The child and mother should sleep together, for bonding and breast-feeding. On the floor.

Presenter (about 30 times in the space of 2 hours): If Obama can do it, why can’t you? Say yes we can. (I’m not quite up to date on my politics but I don’t think Barack has been trained/giving out breast-feeding advice)

Presenter: (every time when giving an example difficulty with breast feeding): So will you help this woman? (probably the most ridiculous question I have ever heard considering the staff present (Mostly paeds, midwives, obs/gyn) and it is never rhetorical.

Presenter: What colour should baby poo be? Yes, yellow. Like scrambled eggs. (there goes my appetite for one of my staple meals here)

Some fairly interesting facts that no doubt you will never need to know but are pretty interesting regardless:
0 out of 16 public hospital facilities in Nyanza province (where I live and work) are considered “baby-friendly” according to UNICEF / WHO guidelines

A common belief here is that witches at marketplaces (yes, it’s oddly that specific) bewitch new mother’s breasts which causes the clearer, more watery milk (“foremilk”) that is at the beginning of every feed. Due to this many mothers get rid of it even though it is nutritionally great for a kid just not as good as the dense white, nutritionally higher milk that follows (“hind milk”)

In some tribes/cultures the baby cannot be breast-fed until the baby has been named. This priviledge falls to the father and sometimes does not take place for days or weeks after birth. In these cases the child is fed salty and sugary water instead.

In some tribes/cultures once a Kenyan becomes a mother and produces milk, one breast’s produce is strictly for the father and one breast for the child.

60% of all Kenyan mothers are anaemic

Calcium and Iron are not pals. In the presence of calcium, Iron’s nutrients cannot efficiently absorb into the bloodstream and body. The presenter stated if you drank a glass of milk with dinner every night for 6 months your Iron content would reduce by around 25% (not sure how accurate this statement is mind!)

Highlights:
The child who I took to the epilepsy clinic as she was being dosed up to the eyeballs with drugs has been changing her intake and after never seeing her awake (even when O.T’s are going to school on her), she has been eyes open the last 3 times I’ve seen her!! :)  The dosages are still being altered but I hope to start to observe and give advice to mum in the next few weeks.

Training has continued to go great, especially at the two schools I previously mentioned where I delivered an Autism specific workshop. Disciples of Mercy have been great and responded to my request to have as many of the parents and relevant staff be there one morning so that I could not only give a brief hour long information session on Autism but also introduce some strategies that I could show to both parents and staff and they could then practice whilst I was there :) It was kinda a bit hectic but at least it’s a start and the most functional, easy way I could give information to a number of people whilst getting parents introduced to each other for some good old fashioned support. The tentative plan (though I’m not sure if time’s gonna make it possible!) is to home visit all 8 kids in the autism unit before I dissapear for Christmas to follow-up the session and take photos of things around the home to use in communication books and visual timetables.

I delivered pretty much the same workshop at Lutheran which could only happen on a day kids weren’t in (so teachers were free) but therefore couldn’t get parents along. However, the lovely headmistress was trying to organise a load of parents to come in tomorrow for me to mention the importance of attending the epileptic clinic  and give an autism workshop to relevant parents! Why can’t all heads be like this! Unfortunately this had to be nixed as I managed to get onto this early childhood feeding course which was an opportunity to good to miss really.

As I’ve mentioned previously a very high percentage of children I see at the hospital have swallowing difficulties, and along with this (for nearly all of them) one of the factors, if not the main factor, is oro-motor difficulties - difficulties with movement and or co-ordination of head/neck/jaw/lips/tongue. These difficulties also account for a number of non-verbal children I see within the O.T department. Therefore I was very thankful to have arranged for my supervisor to come down to attend to some of my clients, whilst I got a chance to learn a load about oro-motor activites and exercises that can begin to support children with the aforementioned difficulties. One of the most difficult things out here is probably the amount of children I see with sensory issues or oro-motor difficulties, neither of which I’m specifically trained for (being newly qualified) and it can be a bit intimidating/difficult when I don’t have much information or activites to do with these clients especially when it is their main difficulty/priority.

Over the past week I’ve had a number of clients referred to me from all areas of the hospital which is simply brilliant. It makes me think that at least some people have knowledge not only that I am here, but more importantly what I do and the types of clients I work with. An O.T who only works out in the field brought a non-verbal 7 year old to see me from their home a few hours away and from various other personnel I had 2 very different adult stroke referrals this past week with one being a lovely young man (32) who is exhibiting global aphasia (difficulties with both receptive and productive language) with very common characteristics such as word-finding difficulties (causing non-fluent speech) and some fluent unintelligible jargon-like speech. He has an unbelievable brother who is looking after him and takes notes at all meetings and is using all the word-finding strategies I introduced them to on my first meeting (examples such as talking around the word e.g: what category is it in? What size is it? What colour? What is it’s function? And giving a phonemic prompt - the first sound of the word). The client is great because even though he is obviously struggling with the impact of the stroke, he has a really good sense of humour and realises (at times) when he has made a mistake/when sounds don’t come out right and can laugh at himself. Something which I think is incredibly important when something as life-changing as a stroke happens. As a side note it’s also great to work with adults too as this is an area which I always thought I would go into and although I love working with kids, in my heart of hearts I still think adults is where I want to be.

Playtime :)
A couple of weeks back I bustled off to a place called lake baringo for the weekend with a motley crue of americans and brits (some of which are in a pic below). Although we only stayed for a single night, the 7 hour journey there and back was an absolute joy made awesome by getting to know each other (a number of people I’d never met before), drinking beer (don’t worry, the rental van came equipped with driver!) and playing games such as Kenyan road bingo (e.g: spot 4 people on a motorbike, an entire living room of furniture on a tuk-tuk etc.), The place we stayed was absolute heaven, the communal food was mind-blowing and drinking into the night on our pier overlooking the lake was beautiful. Even gotta see a hippo about 15 ft from our pier munching away for a good few hours :) The day we left we went on a little hike taking in some breathtaking landscapes and a couple of scorpions, rock hyrax and a snake. Good times.

Continuing weekend fun, this past one, on the Friday went out for some live traditional music and even got a little dance on (yes, I did have a number of tuskers) before Saturday was a day of afternoon drinks and games. About 15 people joined in am afternoon of corn hole (thank you America for introducing me - look it up before you assume it’s something rude), Stickcup (thank you Canada for introducing me) and a quiz hosted by yours truly (Thank you England for being the country I grew up in). Absolutely lovely stuff.


Lowlights

The only real lowlight was me being a bit on the ill side for the good part of a week which meant having to cancel on clients, appointments and rearrange my already frantic schedule! Oh and I’ve been writing this in the dark cos there’s something really weird going on with the power and the lights have been on then dimming then switching off every 45 seconds or so constantly for the past 3 hours. It’s even more annoying then having no power. And it’s taking me about 3 times as long going back over all the spelling errors. Effort!


Plan for the week is looking pretty eventful as am on this childhood feeding course until Wednesday, doing 2 or 3 school visits on Thursday if possible as nearly all the schools close up this week until January followed by a thanksgiving dinner (!) before Friday to Sunday going to a national park called hells gate for a bit of camping and wildlife. Woooooooooooooooooooo.

PS: Reached 1000 views!! Thank you all for continuing to be interested in my word vomit and work!

Huge hugs to all,

Jon x


Top 3 songs on Itunes shuffle whilst writing:

1. American Slang - The Gaslight Anthem
2. Love Is Rare - Morcheeba
3. Here I Dreamt I Was An Architect - The Decemberists

Life and Death

Firstly please check my last post again if you fancy it as I've added some pictures :) !


As I’ve been enjoying a little bit of time away from the soul-sucking, time consuming world of the wide web it’s been 2 weeks since my last update so to make things a little more palatable and less boring I’ve just gone for some highlights and lowlights of weeks past.


Highlights:
After seeing a plethora of clients with epilepsy/seizures/convulsions that I was particularly worried about I arranged to support two of my clients at a monthly Saturday epilepsy clinic (situated in a barn! See below). I was specifically worried about these clients as they were still having anything up to 5 seizures a day even thought they were on a cocktail of drugs that were meant to be treating the condition. Additionally, the child I was most concerned about was sleeping almost every hour of the day only to wake up for feeding and was on far too many drugs for her age, causing this constant state of sleep. When enquiring about it, the dose had just been put up again the week gone by, nothing has changed regarding the convulsions and the doctor told the mum “it’s better she is asleep than awake and having convulsions”. Absolutely ridiculous considering she has not/cannot learn anything when not awake.
The Doctor was amazing. He explained to me how he treats clients he sees - using mono-medication therapy as drugs tend to interact with each other, stepping the dosage up every month if the parent’s diary shows no improvement in severity/amount of seizures. If the dosage limit is reached for the person’s age/weight and no large positive effect has taken place the dosage is stepped down to nil and an alternative medication is trialled.
I was pretty shocked that EVERY single new client we saw were taking a lesser suitable medication than than the doc would recommend, a mix of medications (a no-no), the wrong dosage or taking the tablets are the wrong time of day (many take half a day to kick in). The reason for this was likely to be due to negligence or people wanting to make as much money as possible. Incredibly wrong on all counts.
Both my clients turned up which was great as well as 2 other kids I had previously seen in clinic or hospital and then during the session I recommended 3 parents to bring their children to see me for speech/language/feeding difficulties, all of which came to see me on the following Wednesday. Crackin’ stuff.

After being a bit here there and everywhere for the first few months work has settled down a little into a semi-routine! By settled down I don’t meant the amount of work but after seeing a number of different schools I have decided upon a few schools to roll out extensive training to and hope to dedicate at least half a day to on a weekly basis. These were decided by type and need of clients and motivation of staff/teachers. For example, Joel Omino School where I have been a good number of times over the last month is a mainstream school with a large amount of stammerers, so after arranging a number of meetings with the students, teachers and parents I shall now predominantly be going on a monthly basis for the stammering group.
So, over the past 2 weeks I have observed meal-times and in-classroom teaching within a special unit of 70 children at a private school (Disciples of Mercy) and a school for the “mentally handicapped” (Lutheran). I then carried out eating and drinking difficulties training for 17 and 31 staff members respectively (pictures of the Disciples training and a weird thing in the lab it was held below). The training went really well and not only was the feedback kind but all staff and principals want me to continue coming back for training on a weekly basis, which although something I intended/hoped to do is great to have that motivation/interest/encouragement from staff.
This coming week I am doing general SLT stuff/in-class room strategies for Lutheran, Dysphagia training (swallowing difficulties) for 25 staff from across the whole of the hospital I work in and then following-up next week with Autism training for staff and parents (who I’m getting the principals to drag in!) in both Disciples and Lutheran where I hope to give information and advice before introducing some of these strategies (Such as visual timetables or the start of training towards a picture exchange communication system - PECS) in the classroom with teachers and parents on hand to watch and take part :)

Speaking of Joel Omino, not sure if a low-light or a highlight but held the monthly stammering meeting and was a bit gutted to see only 2 pairs of parents turn-up however did manage to round up all the children who stammer in the school to watch a brief English documentary on stammering which I think was really good for them to see that people from all over the world, both young and old stammer, stammer in all sorts of ways and don’t let it stop them from carrying on their lives. The highlight here really are one of my client’s parents who have both come to everything I have arranged and are so brilliant in not only wanting the best for their son but also for all the children at the school who stammer and are very outspoken against how terrible it is the teachers are not getting involved (this occasion for example I went to the staff room 5 minutes before starting and at least 5 said they would come, none did) and said that they are really thankful of everything I am doing and to “not give up” which really is the type of thing I’m meant to be saying to the parents, not the other way round!


Towards the back end of last week I had 3 home visits I decided were important enough to travel/fund. Two of the referrals were from staff at Disciples immediately following my training which once again is just mind-blowingly great. They were for eating and drinking difficulties - one child, Jack, who has been off since July was immediately flagged when I mentioned some symptoms, they pointed out he has had recurrent chest infections, and the other a child called Victorine who I noticed was not being fed at break-time even though she was in the group that needed feeding assistance. I was told anything that they try to feed her she vomits. The other child has been diagnosed with autism (I query this as she possesses some social skills such as eye contact, reaching to hold hands etc.. though does have a load of other characteristics common with autism which is why I’m sure she has been diagnosed this way!) and is approaching 7 years of age, is non-verbal and although has sensory issues has some great strengths with taking/receiving items and can sit and concentrate for a few minutes at a times which makes her a great candidate for starting PECS.


Lowlight
Jack.
As I had not been given his record/case history the only thing I knew was that he had been ill since July, had a diagnosis of Cerebral Palsy Quadriplegia and was having chest infections. On arrival to Jack’s house the first thing I noticed was how painfully thin he was and that he seemed to be having non-stop small convulsions every few seconds (these started a week ago and had not stopped, even with medical intervention). Jack’s legs were as thin as my wrists and I could put my thumb and forefinger around them even though I have pretty small hands. I would’ve estimated he was around 7 or 8 years of age but when I asked Mama Jack she informed me he was 16 (I later found out his weight over the last month ranged around the 20kg mark). Mama Jack was prepared for my visit and so we began the feeding assessment. Without going into too much detail, Jack was aspirating on both liquid and mashed consistency (normally the safest for people with eating and drinking difficulties) and could not chew so solids were not a safe trial. He had no swallow whatsoever on mashed food and only had a very delayed, weak swallow on liquid and with every mouthful of anything he took, in part some was going into his lungs. In addition, he vomited up (seemingly) anything that was going into his stomach, with not only the food coming up but also a lot of mucous.
In as gentle a way as possible I informed mum of what exactly was happening, why I was so worried about Jack - he was seriously malnourished and as things stand anything he takes down is making his condition worse by going into the lungs or he is vomiting it up so he essentially is getting zero nutrition. Mum was very receptive, understood my explanations and concerns and it was arranged that the very next morning I would meet them at the hospital to see what we can do. This is the first client I have had where I did not know/could not do anything to help. Unlike others where maybe I’m not quite sure what to advise or do, with Jack there was literally nothing I could do and also I was not even sure what could be done at the hospital because in the western world Jack would likely be put on a PEG (a tube feeding directly into his stomach) but here this doesn’t exist as far as I know and the alternative - a NasoGastric Tube - is only recommended for short periods of time.


The next morning I got the call from Mama Jack and spent the day from 9am til 2pm with them (until I had to leave to do my stammering group). The reason I wanted to be with them was to explain to the doctors what I have seen and what I’m concerned about as it seems that for Jack at least people were only treating him with whatever ailment he came to them with. He had been in the hospital 5 times in the last 2 months with Malaria, Cerebral TB, high fever, convulsions and yet he was treated for that particular ailment via drugs and sent away. It seemed like no-one had questioned the fact this 16 year old was incredibly malnourished or that his breathing was constantly gurgly let alone not found out any of these problems from mum. I can only assume this otherwise he would’ve been in hospital care.
So I explained everything to the first Doctor who kind of ignored me a bit and said the convulsions are what’s needed to be sorted first (in line with my thoughts above), whereas when I repeated this to another Doc who came over he immediately recommending getting him on an NG tube and in-patient care. I further explained everything to the 7 trainees and other doctors that came to surround Jack’s bed as he was having blood samples taken (which was excruciatingly painful to watch as they found it incredibly hard due to his condition) and sugar syrup pumped into him. At one point when I pointed out how malnourished he was for his age mum was asked his age. When she replied 16 there was a look of disbelief/disgust by all surrounding the treatment table and mum was asked a further two times to clarify his age. That’s how shocking his weight was, even to those who work day in day out in these facilities.  A chest x-ray was also taken after which they were waiting to be taking to in-patient care when I had to leave. At 2pm I wrote a note for the mum to show to all that work on/with Jack and informed her I would phone tomorrow to see how things were going. 


At 6pm the mum phoned me in tears and merely said “the boy is dead” before hanging up.


Considering all the difficulties Jack had and his condition it was not unexpected however after getting him to the hospital and being transferred into in-patient care I was really hopeful this was be the start of something rather than the end.


I received a message today from the social worker who I worked alongside for Jack’s visit passing on a message from Mama Jack that she was really appreciative of everything I tried to do for Jack and would like me to be at the funeral.


Rest in Peace Jack.