Sally's World

Deion has to go into hospital tomorrow for some tests on his central nervous system. The doctors are still trying to find out why Deion is losing muscle strength, so we are off for another set of tests, maybe we’ll get some answers this time. He should only be in for a day or so.

I’m packing his bag as we speak, which seems to include rather a lot of video games and a whole rotisserie chicken for him to scoff as soon as he can eat again...he isn’t bothered about anything else!!!

So if I’m not blogging for a couple of days, it’s because I am at the hospital with Deion, or if he’s home, catering to his every need!

Back soon

Sally and Deion xxx

Thank you everyone for your e-mails and messages of support for Deion and what’s been going on. A few people are asking me what is wrong with Deion with regards to the new tests.

The simple answer is, “we don’t know.”

Deion’s elder brother passed away from a muscle wasting condition three years ago. At that time Deion was tested for similar conditions as he was also a wheelchair user and ‘vulnerable’, but nothing was picked up.

Deion’s condition was always separate from Aaron’s because Deion was a preemie and had a brain haemorrhage resulting in cerebral palsy. Yes, there were physical disabilities, but we were not expecting anything new to show up…

Well, life just isn’t that simple is it?

About 18 months ago Deion developed a squint right out of the blue. At first the doctors thought he was having small absences, so ordered tests for epilepsy…all negative. The squint got worse, and then was in both eyes, so they had to correct it.

Then he started getting headaches, so the tested for brain swelling or tumours…still negative thank goodness.

Next Deion began to have trouble chewing and swallowing. Normally Deion could reduce a man size meal to a mere smudge on a dinner plate in seconds, but he was taking half an hour or more to eat small portions, and was having to swallow six or seven times for each mouthful to get the food down. More tests, which showed the doctors that chewing was becoming unsafe, then he had some weight loss, so food supplements were prescribed and now we have to closely monitor all his food and textures.

And now Deion seems to be losing some of the use of his trunk muscles. His head is a little floppier, his legs are weaker when doing his exercises, and sitting straight is harder. So his wheelchair has lots of added support and a head rest for him.

Deion has always been incontinent, but he used to have some sensations in his lower abdomen, now he doesn’t seem to have any.

But we still don’t know why.

The doctors are testing for ‘myasthenia gravis’ (literally meaning grave muscle weakness) ‘muscular dystrophy’ and ‘mitochondrial myopathy’ (which Aaron had).

Now, we don’t particularly want any of these illnesses, but if we had a choice (I know, I know, we don’t…) but we will take the myasthenia, as it can at least be controlled and isn’t necessarily life shortening.

Now it will seem outrageous to many of you to hope for an illness, but any parent in our position will understand. There has to be a reason for the change in Deion and his abilities, so we want the reason to be as non-life threatening as possible…simple…if only.

So Deion is still undergoing tests, he is due to go back into hospital on the 17th Feb for tests on his central nervous system, and we will see what they tell us.

One thing is for sure, Deion is Deion, he’s strong and determined and whatever we have to deal with, we will…because lets face it, we have no choice. And although it feels a little de-ja-vu, we are staying positive that we are not going down the same road we did with Aaron. We have to believe Deion is here to stay, no matter what any test or doctor tells us, because to live any other way is not living, it’s waiting for something to happen…and that’s not what we do!

So thank you for your support, I know there are many, many families in our position, so I am wishing everyone of them well. I know how hard it is to stay strong, but look in your child’s eyes, see the love in them and tell me that is something that you will ever stop feeling!

Fight, fight, fight!!!

Take care

Sal xxxxx

I am just writing this blog, because I was touched today by someone’s simple act of kindness.

The day didn’t start off great; Deion had a couple of hospital appointments; we had our usual two hour wait for the first and our usual tussle over results at the second, I left knowing nothing more than I did before we went.

Then as we had an hour to spare between the hospital appointments and Deion’s Physio therapist appointment, I took Deion shopping so he could spend his birthday money.

We inevitably ended up in the game shop, because somehow he ended up with about seventy thousand pounds worth of game card vouchers (slight exaggeration!) for his birthday.

I then got his feet measured and had to hand over roughly the equivalent of our monthly shopping budget for a pair of trainers just because they were a particular brand and colour…great.

We then gave up in pound land, as the isles are too small for his wheelchair to get around, of course we had the requisite number of doors slammed in our face, the usual amount of people moaning about Deion getting in the way and of course I had expended an extraordinary amount of energy in NOT thumping at least twenty people for being so bloody rude!

So I just didn’t have the energy to argue when he asked for a MacDonald’s for lunch. He couldn’t believe his luck when I didn’t lecture him about trans fats and nitrates (yep, I’m that sad), but instead just held the door open for him to go on in.

While we were trying to fight our way through the crowds of schoolchildren (that surely should have been in school anyway) Deion got walked into, banged and scowled at about ten times. The usual really… people just don’t see him, they are only looking at eye level I guess!

Then a lady who worked there told us to go and sit down and she would get our food for us to save us queuing. This was new to me, and not something that is normal practice in MacDonald’s I believe. But we followed her to a table, she wiped it down, asked Deion what he wanted, and then went off to get his happy meal. She came back literally a few moments later, gave us the food and handed me my change.

Deion and I, dumb struck, thanked her profusely.

She told us it was her pleasure, she has a daughter in a wheelchair and knows how hard it is, but it was so refreshing, because she actually spoke to Deion instead of over him, instantly knowing the wheelchair didn’t make him stupid. She was lovely and it made a huge difference to what is normally a nightmare of pushing and shoving and ‘excuse mes’ into something quite relaxing.

I’m sure to her it was nothing more than a small act of kindness, but to us it was beyond nice, and she made Deion feel really special.

“Wasn’t she a lovely lady mum,” Deion said as we left.
“Yes she was,” I said.
“I wish more people were like her don’t you mum?”

Yes I do!

Take care

Sal & Deion xxxx

Up until I was pregnant with Aaron, I used to go kick boxing; I really enjoyed it as a way to keep fit. And it was great for relieving stress…or what I thought was stress! When I look back now at the things that stressed me out when I was 15/16/17, I realise I may have been a tad dramatic about things.

Mostly, I do stick to Yoga, but I’ve gone back to kick boxing several times over the years, and seeing as life is a little stressful at the moment, especially what with the test results e.t.c. I thought I’d give it another go. I joined a gym quite a while ago, and am sorry to say, I do not take full advantage of that membership. I don’t get there every day, even every week; there are days when the only exercise I get is from going back and forth from the fridge, or from lifting large bars of chocolate to my mouth. But hey, its all exercise right!!!

The gym has a punch bag, so I dug out a track suit and gloves from the back of my closet and headed out. I bypassed the running machines (I’m too clumsy, I fall off them), bypassed the gym balls (I’m too clumsy, I fall off them), ignored the rowing machine (I’m too clumsy, hit myself in the jaw with the handle) and went over to the punch bag like a woman on a mission.

One thing I realised is, that the same way we are advised not to go to do the grocery shopping while we are really hungry to avoid buying your body weight in chocolate; you shouldn’t go to the gym while you’re angry. I got a tad carried away and literally beat the crap out of the punch bag. I think a few people were concerned. Maybe because I was muttering and swearing under my breath… And I think I heard a couple of people deciding whether or not to call a psychiatrist, failing that an exorcist!

The good news is, I got rid of a lot of pent up anger and frustration…the bad news is, I can barely move. Like I say, I overdid it just a smidge, my arms are killing me, they shake should I so much as try to lift a cup of tea to my lips. And climbing the stairs, forget it; I had to go up on all fours.

But I’m ready to fight another day…bring it on…okay, so I may still be getting a little carried away!

Take care

Sal xxx

Well, I have still had no news of the results. I phoned the hospital every day last week, and also this morning, but they could still tell me nothing.

The interesting thing is, the neurologists told us that until they had the results from these tests, they could not determine the next step, they couldn’t decide on the what follow up tests were needed and so on.

So I was more than a little surprised when I got a letter in the post this afternoon from the clinical neurophysiology department at Guys hospital, asking me to take Deion for muscle and nerve tests in a couple of weeks time.

I rang the department to find out more, they were very helpful with regards to telling me what the tests entailed/sedation/consent forms e.t.c. But all they could tell me about the reason for said tests, is that they were ordered by our own neurologist based on results from Deion’s previous tests.

Wouldn’t it be wonderful if someone could phone me, or alternatively phone Deion’s GP or Community Paediatrician, so they can tell us those results? As usual, as parents, we are the last ones to find out.

I guess we are a little confused, the doctors said the tests were necessary, they said we shouldn’t wait, that he may have a treatable condition….this is why we went ahead, and this is why it feels like it matters so much to get the results and move forward.

So I guess its good news that we have our next step, I just feel as though I have no clue what is going on, and he’s my baby (although he’d kill me for saying that). Maybe I’m wrong to feel as though I have more right than anyone else on the entire planet to know what they ‘think/suspect/know’ is going on inside his body!

Its not easy for us parents to place our trust in doctors, are we expected to do this without question? Are we supposed to feel guilty for questioning their methods?…perhaps if someone could re-send a copy of the rule book with regards to what we can and can’t ask these doctors about our own children, that would be great!!! I seem to have misplaced mine.

I seem to continually annoy doctors’ by asking questions about my own children...if I ask a question about the next step…or god forbid, time scales, I get looked at as if I’ve just suggested ritual animal slaughter or told them I listen to Barry Manilow records, either way, they look at me like I’m quite mad for questioning them.

I doubt it will put me off though, unluckily for them!

Take care

Sal xxx

I really thought we had it sorted. I thought that today, the results would be in my hand and we would be planning the next step…But once again, I was wrong.

Deion had several appointments yesterday, it was an afternoon of it, we went down to the chid development centre with an extra large picnic hamper and some books and a pack of cards, and just camped out.

First he had his multi disciplinary with his paediatrician. This is an hour long appointment where we talk about all aspects of Deion’s care, weight, height, discus any changes and so on. Obviously the lack of results after Deion’s tests came up and the doctor made a phone call then and there (excellent) he was told he’d get a ring back.

The doctor knew we would be in the building for a couple of hours, so he was going to come and find us when he knew more.

Then we saw the community nursing team, discussed Deion’s pads e.t.c

Then we saw the speech and language therapist…not that Deion has problems with his speech…far from it, but she is also the person that deals with the problems Deion has with chewing and swallowing his food and drink.

Then we saw the dietician where we have to go through Deion’s food and drink and make sure he’s getting a balance as there are many things he struggles to eat now.

And after all that, we still didn’t get a call back. I heard our doctor leave all my numbers, and his own mobile with the relevant person; I heard them promise to call him back. And I really thought that because it was another professional, and not merely a neurotic mum (yep! that would be me!) that they would have called him back.

I guess we’re back to the kneecapping option then!!!!

I got a couple of e-mails yesterday after I posted the blog about Deion’s test results. Thank you for those. I am both grateful to you for the support, and sorry that you are in a similar position.

At least I know it’s not just me I guess, I was started to get paranoid there!

It seems that keeping parents in the dark is the standard procedure. After all, we are merely the people who have to love and care for our children, we are merely the people who have to plan every aspect of their lives, their care, their schooling, their future basically.

So I guess it is understandable that we are considered the last people that need to know what, if anything is wrong with our children....

I hope you hear soon too, I’m getting to the point where I’m going to take a flask of coffee and a sleeping bag and move into the doctor’s office to get noticed!

Maybe I’ll see you there...bring cake!

Sal xxx