IF YOU'RE HAPPY AND YOU KNOW IT

 
 

 
Ever since I watched the fabulous SWAN Video I have had the Happy Song running through my head at various times of the day. I love the concept behind the video. Disability in all of it’s many forms is often portrayed as something sad and yet the thing that often strikes people most upon meeting Jess for the first time is how happy she is. Sometimes people have commented in almost surprise  ‘she seems very happy despite everything’. Of course Jess is happy, well 90% of the time anyway. She is not aware that she is any different.  The same can be said for her other SWAN friends as the video clearly shows (click on the words SWAN Video above if you have not seen this yet and scroll down the page)

So with all of this happiness going on what have we possibly got to complain about?

Happiness also worked against Jess in the early days. We knew that she was not developing as she should. She would not feed and was losing weight rapidly and yet through all of this she remained placid and happy still managing to respond to a friendly voice with a smile. Her parents were at their wits end trying to get the medical profession to take them seriously but it was like banging their heads up against a brick wall. I remember well the day that we sat in the children’s ward of the hospital waiting to see a consultant. Eventually his assistant came to see us and after listening to the various things that were concerning us about Jess she dismissed it all by saying that there couldn’t be much wrong with her as she seemed quite happy! Of course this woman was missing the point completely. The very fact that Jess was happy was a concern. She should have been screaming with hunger for one thing. Due to my Daughter’s calm, but effective insistence, routine tests were done but all came back negative. My Daughter was made to feel like an over anxious Mother.  The MRI scan which they had to pay for privately was to show that Jess was born with an underdeveloped brain, the reason for this is still a mystery.

We are fortunate, insofar as we know Jess does not have any serious medical issues. She has widespread Global Developmental Delay, she is still non verbal and she is fed through a gastrostomy button, but she is not on any medication and she only has to see a consultant a couple of times a year. But, and this is a big BUT, she may be nearly four years old but she is way below that in her mental development. She does not understand danger, if she was to fall off something and hurt herself she would go back to climb on it again later, she has to be watched constantly. She tries to chew everything from skirting boards to radiators (sensory thing) and if left unattended would chew electric cables too. She needs constant supervision and probably will for many years to come. She does not seem to need as much sleep as other children and sometimes wakes up in the night for no apparent reason but is still happy.  Yet, despite these issues, because she does not have a ‘label’ that professionals can recognise, because she is a bit of a mystery, trying to get help or special equipment can be a nightmare. Once again her parents are often made to feel as if they are over reacting, after all ‘she is such a happy little girl there can’t be much wrong’.

Yes it is a mystery as to what caused Jess’s brain to stop developing whilst she was in the womb. Although Jess is currently taking part in a genetic study where samples of her DNA are tested using the latest microarray and sequencing methods she may never get a diagnosis. The reason behind Undiagnosed Children’s Day is to make people aware – PEOPLE IN THE MEDICAL PROFESSION AND SOCIAL SERVICES THIS MEANS YOU TOO– that just because a child is presented as not having a diagnosis this does not mean that they should not be taken seriously. Care & support should not begin with a diagnosis, it should begin when it is needed.

Undiagnosed children still need help, their parents still need support and understanding. Our slogan last year was UNDIAGNOSED BUT NOT INVISIBLE – I think that says it all so it’s a mystery to me why we are still being ignored in certain circles. 

If you, or you know someone who has a child with an undiagnosed condition then help is at hand.  We belong to a fantastic support group called SWAN (Syndrome Without A Name) UK.  If you would like to help keep this support going then donations can also be made through the site.  Thank you.

HAPPY UNDIAGNOSED CHILDRENS DAY EVERYONE!

 

THE SLEEPOVER

 
 

GOOD MORNING NANNY

 
 
At the weekend I had a sleep over at my Daughter’s house to look after my two Granddaughters. It was my Daughter & Son In Law’s Wedding Anniversary and they were having a rare childfree night away together.

Although there are bedrooms to spare at my house because Jess has to sleep in her specially adapted bed I have to go and sleep there. Mr. H. comes with me and we all have tea together, then he leaves later on having helped me get the children bathed and in bed. We have two dogs which we don’t want to leave on their own all night.

The reasons for Jess needing this bed have been written about before but basically it is to keep her safe. Jess will sometimes wake up in the early hours of the morning (for no apparent reason) and will happily play in her bed before eventually falling back to sleep again. If she had an ordinary bed she would just get out of it and try and walk around and as she has absolutely no sense of danger this could be disastrous. Jess is also pump fed throughout the night and therefore needs to be in a secure bed otherwise she would be rolling out pulling over her pump and stand and probably pulling out her gastrostomy Mic-key button. At least if she does wake up, although her feeding tube has to be detached her parents know that they can go back to bed safe in the knowledge that she will not come to any harm and will eventually lie back down and go back to sleep whereupon they can re -attach the feeding tube if necessary.

This is not the first time I have slept over and so far Jess has been good to her Nanny and slept through the night although I must admit to always feeling some apprehension – what if I fall into a deep sleep and don’t hear her if she wakes or the pump alarm goes off?

Mr H. and I pick the girls up from Nanny Joans later that afternoon. Nanny and Granddad had just got back from taking them to a local nature reserve.  Jess looked reasurringly tired. Once we got them back to their house it was time to prepare tea for us and then get Jess on her pump for her 6.00 o’clock feed. Mummy had left instructions that it was bath night too.

Bath night with the girls is messy. Messy and noisy. Jessica loves being in the water be it a bath or a swimming pool, it is all the same to her and means lots of splashing and lots of excited babbling. Natalie also loves bathtime it also means splashing and non-stop talking. I bathed the girls together after listening carefully to Natalie’s instructions about how much water I have to put in. Apparently last time I had not put enough in (Nanny being over cautious again). Finally after lots of splashing (I looked like I was about to enter a wet T-shirt competition) and lots of excited shrieking I declared bath time officially over. I seem to remember bath time with my own girls having a calming affect on them but not my Granddaughters. Whilst trying to stop Jess from crawling off with only half a nappy attached I was also trying to get Natalie to understand that dancing in front of the mirror in her Birthday suit was not behaviour becoming of a young lady! I finally managed to get the nappy on and Granddad got Jess ready for bed whilst I was drying Natalie’s hair. 

“Does she go inside this growbag?” Mr H. shouted across the landing. A baby sleeping bag is not something he is used to.

Finally both children are in bed and whilst Granddad reads Natalie a story I set about sorting out the bathroom etc. After goodnight kisses Natalie settles down and we close her bedroom door. I look in on Jess and she is sound asleep.

After Mr H. has gone home I settle in front of the tv for an hour before preparing Jess’s night feed. I liken this to a three-stage operation.

Stage 1. Set the pump to the correct dosage and rate. Prepare the milk by attaching 'giving set' to the pump. The giving set are the tubes that the milk flows through. A large bottle of high calorie milk feed is hung onto a stand which the pump is then attached to. One end of the giving set is attached to the bottle of milk and then is fed through the pump and then primed so that the milk goes to the end of the tube ready for it to be inserted into Jess’s gastrostomy Mic-key button.

Stage 2. Attached the feeding tube to the Mic-key button making sure it is locked in place.

Stage 3. Turn on the pump, make sure that everything is working correctly.

So at 10.00 p.m. I start to get Jess’s pump set up ready for her to go on her milk at 10.15. I go upstairs. The pump is already attached to the stand now and the milk primed in the feeding tube ready to be attached to Jess’s Mic-key button. Jess is fast asleep curled up in a ball at the bottom of her bed. This seems to be a favourite sleeping position but is no good for feeding. Using the light from the landing to see I carefully lift her back up the bed (which is raised slightly at the top) and put her onto her back so that I can start to attach her feeding tube. Jess stirs slightly but does not wake up. Great – Stage 1 is complete.

I am about to go to Stage 2 and start undoing the zip on her sleeping bag when Jess rolls over onto her side and draws up her knees into a classic foetal position. Now I have to do Stage 1 again! This time Jess protests a little at being disturbed and I honestly think that she is going to wake up. I stand stock still after putting her back up the bed and onto her back, I can feel my heart beating in my chest.
I carefully lift up her pyjama top and pull off the dust cap on the button. Jess stirs again and starts to roll over but I manage to push her gently back mid roll. Again I am standing like a statue poised with feeding tube in one hand and trying not to even breath too loud incase it disturbs her!

Eventually I complete Stage 2 and allow myself a sigh of relief. As I am carefully bringing down the zip on the sleeping bag so as not to trap the feeding tube Jess also lets out a sigh and promptly rolls onto her side again in foetal position. I now come to the conclusion that this is going to have to do, I dare not move her again as I am sure she would wake up next time. Satisfied that her tube is not twisted and there is enough slack from pump to button to allow for movement I go straight for Stage 3 turning on the pump.
I wait in the doorway for a short time just to check that everything is o.k then carefully come back downstairs.

11.45 I am going to bed. So far everything has been quiet. I go upstairs and take a quick peep at the girls. Nat is fast asleep. Jess is fast asleep and the pump is humming rhythmically. I notice that Jess is dreaming as her mouth is twitching slightly, her dummy (which she is only allowed at night) is lying by her cheek. I smile to myself. She looks so serene. I am just about to turn away and get ready for bed when Jess turns over again and presses her cheek straight onto her dummy! 

The mouth stops twitching and the eyes start to flutter open a little. A small groan escapes from her mouth. Every second counts now. Quickly I wrestle with the safety catches on the bed door, the noise bringing Jess ever closer back to reality. There is no time to be lost, I roll her onto her back with one hand and insert the dummy with lightening speed with the other. After a few vigorous sucks all is well again, the eyes are now shut tight and the breathing is once more relaxed. I go quickly to bed feeling like a footballer that has just saved the team from disaster by scoring a last minute goal.

I am happy to report that Jess slept all through the night without incident. I did wake with a start at one point though as I felt something land next to me. Had I made sure that all the doors were locked? - I was relieved to see that it was only Daisy the cat!

The next morning Natalie came into the bedroom at 7.00 o’clock and snuggled up next to me. We talked about all the things that matter to a seven year old, such as the Easter Bunny (Natalie thinks he must live with Santa at the North Pole otherwise the Easter eggs would melt!), we discussed our favourite school dinners, our favourite vegetables and of course the best app you can get on the Ipad which according to Natalie is Secret Diary because you open it with a password and can then write things in it.
Later on she did show me what she had written in her secret diary – the entry for Friday was:-

“Tomorrow I am stopping at Nanny Joans and then Nanny Anne is coming to sleepover. I love them both very much”

I turned away quickly as I felt my eyes sting with tears and I know that Nanny Joan would have been the same too.
I love being a Nan.
 

Secret diary

Something else came to mind that night as I was lying in bed. All was quiet apart from the low hum of the feeding pump coming from Jessica’s room as it switched itself on for a time and then quiet again until the next cycle. It struck me how normal this routine had become. I can remember the first time that I fed Jess whilst on my own using her NG tube before her gastrostomy. In my blog I recall dancing around the room because I had mastered the procedure. Then there was the first time I fed her alone after her gastrostomy. Learning how to set up the pump and the giving set. It all seemed so complicated and I was terrified that I would do something wrong. Now it is all so second nature.

Although without her special milk formula Jess would not be here today I used to see the artificial feeding as a constant reminder that Jess was not able to enjoy solid food like her Sister. Now I have to admit that I do not think about it much at all. Jess does have small amounts of solid food but nowhere near enough as yet to warrant taking her off her milk. Yes, perhaps in the future she will and I would love to see her tuck into a roast dinner (Natalie’s favourite) but for now I know she is getting the nourishment she needs and that is what matters. She is no longer the thin little baby that had dropped off the weight chart. She is a healthy toddler now able to walk and run around and we know that her fortified milk has made these things possible.

Shh don't tell my Sister I have climbed into her bed!

We worry about what a child will become tomorrow, yet we forget that he is someone today. ~Stacia Tauscher