SDR. Again.

I have previously blogged about the possibility of Will having the SDR operation. I am finding the whole thing very emotional, this probably sounds really strange, but  I feel as though we've grieved for the fact that Will would never walk, and that was fine. But now there is a tiny glimmer of hope, and I am trying so so hard not to get too hung up on it, in case we're disappointed!

I don't want to promise will that he will walk one day, and it not happen. For him to be disappointed, or feel like he has let us down!

I'm struggling with it, just like when we got that 1st diagnosis. Its very nearly 3 years ago (1st October), and I can still remember every second of it. But at the same time, it blurs into insignificance. Will has achieved so much more than we ever thought possible.

He has proven them all wrong with so many things, and I am so proud of him. It just sort of feels like he hit a brick wall and hasn't done 'anything new' for a while. and its VERY unlikely that he will walk without an aid, if he doesn't have the operation.

I am pretty sure that we're going to go ahead with the procedure. If nothing else but to keep a hold of the mobility he has. Cerebral Palsy causes deformity. This means that any mobility he has now, as a child, will be ruined as an adult, especially with the growth spurts that come with puberty!

We have recorded the video application we need and his Physio said something yesterday when she was doing it. She told Will's dad and I that she sees will once a week at the moment as she feels his CP is responsive, and she feels like she is making a difference, where as in a year or two, it wont be like that, it wont respond so well, so she will only see him every 3 weeks instead.

This struck a cord with me. Surely if its responsive at the moment, then NOW is the time to have the operation?! Right?

I have been speaking to a lovely lady called Debbie. Her grandson Leo has had the SDR. I think its fair to say he hasn't had the easiest time, but my god has he come on! The progress he has made is amazing! I have seen the video application the made for the SDR and also videos of him walking UNAIDED afterwards and the difference is immense!

I cant express how nice it is, to finally speak to someone who has felt all the things I am feeling right now, to know that its normal and to have a rant to!

"I have sat where you are wondering if its possible to raise the money, If the operation will cause more issues than it will solve, that all the English medics cant be wrong, If you can deal with the stress of raising money or the guilt if you don't"

This puts all my rambling and muttering into one eloquent sentence. I do feel like that. But I also feel like it is worth it all.
 
Huge thanks to Debbie for answering some of my 93,889,638,989,347,189,303 questions, and just for making feel better!

Read more about Leo here. :) he is very cute!

Welcome to Holland..Life with a child like Will

I have read this poem so many times, and still it has the same effect. A soggy keyboard.

I wouldn't swap Will for the world. Sometimes though, its so very hard not to feel cheated, for him to not be able to do all the things he should be able to do!

I am so, so proud of everything he has achieved, and know he will grow up into a delightful man. But this is a bit of an explanation of how it feels, when your special little person has Cerebral Palsy.

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. 

by Emily Perl Kingsley. All rights reserved

How do you make a decision like this?

As I have mentioned millions of times, William has Cerebral Palsy. If you are reading this and don't know much about it, there is a tab ^^^ up there :)

Currently his treatment is basic, well for us anyways! He wears these splints he has a walking frame. Walking far isn't really an option, so he also has a chair which he push for him. He has been referred for an Active User chair, this is one where basically the wheels are further forward on the frame, and its easier for him to push himself independently. He gets tired quickly, tho I find its quicker if hes bored ;)

Alongside the splints and frame, Will also has a standing frame, which basically supports his legs and holds him in a standing position whilst his hands are free to play or do whatever. He uses this daily at school, but since its the holidays, we have it at home now.

Everyday we have to carryout 3 lots of stretching exercises, it takes about 20mins. Now that he is at school part-time, we find that we only get to do them twice a day. Hes not a great fan of doing them, but needs must! We find the more he does, the stiffer his legs get,and the stretches are meant to undo the stiffness.

Ages and ages ago, we found out about an operation called Selective Dorsal Rhizotomy (SDR). We mentioned it to Wills then Orthopaedic Consultant Mr Bass, he works out of Alder Hey, but he said it wasn't an option. Fast forward a few months and Will's Orthopaedic Consultant changed over to Dr Kiely, based at Gobowen, this was because he goes to a Welsh school, has a Welsh NHS physio etc, and it meant everyone was singing off the same page.

The last appointment we had was with a registrar in place of Dr Kiely and he mentioned something about the SDR, and Will being a suitable candidate, but the chances of getting it on the NHS are slim to none in the current economic situation.

Will's dad and I have been looking into self-funding it. It is done in the states, in St. Louis Children's Hospital.

I have borrowed the below from the Scope website:

What does the surgery involve?

Selective Dorsal Rhizotomy describes a surgical procedure carried out to the lower vertebrae usually between L2 – S2 (lumbar and sacral area). The vertebrae are opened to reveal the spinal cord which contain the neurones of the central nervous system. These neurones (bundles of nerve fibres) channel messages between the brain and different areas of the body.
Electrical stimulation is used to identify and sub-divide sensory and motor nerves. This process continues until the specific nerves and nerve roots affecting the spastic muscles and which may not be “transmitting” properly are identified and cut. Due to the size of the nerves and rootlets, this is a very precise procedure and therefore the surgery can last several hours and requires a general anaesthetic.

and more importantly the risks, according to British sites are as followed, again from Scope.

Risks and possible problems

It is important to remember that this procedure is irreversible and involves major surgery so we would strongly advise parents to consider very carefully whether or not this is suitable for their child and talk to the medical professionals involved in your child’s care. Not all patients with spastic cerebral palsy will benefit from SDR and some patients will see no benefit or even deterioration in their condition following surgery.
Side-effects can include:

• severe pain after surgery (58%)
• unpleasant feelings in the skin (40%)
• constipation (20%) and urine retention
• experiencing increased spasticity during times of stress months or years after surgery (40%)
• weakness in legs
• dislocation of joints.

% figures based on study of 250 children who underwent SDR (2)
Discouragement in the patient, due to the long follow-on process, has also been reported.
SDR can highlight weaknesses elsewhere, for example, where muscles working alongside the spastic muscles have adapted to compensate for the increase in muscle tone.

However, St. Louis Hospital basically says it is a 100% success rate with no complications.

Now, as a mummy, how do I make that choice? I cant help but be cynical and think that the American site (st. Louis) ultimately out to make money, so are going to play the positive card. We (Will's dad and I) have both joined a Facebook group where people who have either had the procedure, or had children have the procedure post. They are all singing the praises, one woman even said she didn't look at the risks!

It is so so hard to know what to do. As it stands Will is a happy, chatty little boy who is, albeit unconventionally, mobile. If things were to go well, it could improve his life, no end! If it were to go wrong, it could substantially decrease his quality of life!

I would appreciate comments on this, positive or negative. Just to get an other peoples views please :)

Bittersweet Cerebral Palsy

Amber can now sit up unaided. She is 6.5 months and has well and truly mastered it. She has now decided that she doesn't want to lie down to play!

This is a whole new experience for me. Will was almost 2 before he could sit unaided, and even then he was extremely wobbly. Amber rolls over, and has been doing since about 12weeks. Will was 13months the 1st time he did it!

Now I know you *SHOULDN'T* compare, but its so hard not to. Its natural to do it.

The past few days have been an emotional roller coaster for me, whilst I am so proud of Amber, and how shes coming on, its a bitter sweet celebration, and highlights the things Will struggled so hard to achieve!

When Will was a baby, before we knew about his CP, we used to say things like "ooh, I cant wait until he's running round." etc. But it never happened. With Amber, I want to say those things, but I daren't. I feel like a just cant jinx us. This even sounds silly to me, so I bet it sounds ridiculous to 'outsiders' but I just cant take any chances.

Part of me grieves for the milestones I didn't get to with Will, or rather, the fact that by the time he finally started to talk, it was met with relief rather than excitement.

I have thought about all of this a lot recently, and ever the optimist, tried to see the plus sides of it all. During my pregnancies, I suffered terribly with SPD,(Symphasis Pubis Dysfuntion) particularly when I was having Amber, and I couldnt carry Will, or lift him up and down the stairs. SO he had to do it himself! By the time Amber was born, he had mastered it completely! :)

I am hoping that having Amber will continue to bring Will on. and that Amber's development woon't be over-shadowed by these feelings!

1 in a wheelchair, 1 in a buggy.

Last night I wrote my 'what I did today' blog. I felt mean moaning about my day. After all, the kids all enjoyed it. The girls in the other pictures are my nieces BTW.

The trip to Chirk Castle highlighted all negative feelings I have about Will's CP. and all the reasons I avoid places like that. More activities that aren't viable for Will than are. Too many hills. Too many steps. Too many RUDE PEOPLE WHO APPARENTLY CANT SEE MY CHILD WALKING IN A BRIGHT RED FRAME! Ooohh, can you tell that makes me mad?

I love being a mummy of two. My kids are my world. I wouldn't swap them for anything. Even for a William without CP. But its hard. Harder than i thought it would be. Essentially I am a single parent. Dave works 7 days a week, he's self-employed, his own business, his baby. No-one looks after it the way you do. So he doesn't let anyone. Thus leaving me alone with 2 kids. 1 in a wheelchair, 1 in a buggy.

If I stay at home, everything is fine. The problems begin when I try to leave the house. The dynamics of this are incomprehensible. One of two things has to happen, Will in his frame, and Amber in the buggy. OR Will in the wheelchair and Amber in the sling. Both of these bring their own set of problems.

Accessibility is grim in most places. I'd much rather stay at home in my lovely little house, than brave the rude, ignorant people that step over Will, or shove past him.

Then, even if we do find somewhere that's easy to get round, the activities aren't always 'William-Friendly'. I cant decided which makes me feels worse tho- It breaks my heart when Will gets upset that he cant join in with something. But oddly, its just as bad, when he just accepts it. Like he thinks it is ok. It's NOT ok.

I am frustrated, for him. Sad, that he cant do everything he wants to do, join in with all his friends. and i am easily wound up when I think he's missing out on something due to someone elses ignorance. But I know its not normally out of malice, just the fact that people are never sure how to act around him.

I feel cheated and cross, its not fair! Why us? :'(

But when the day is done and I look back, the most prominent feeling (after exhaustion) is pride. Proud of Will, and proud of myself. Will is the most delightful little boy. He is polite and well-mannered, even when people are rude to him.

Sometimes I have to reign in my frustration, and take pointers from Will. After all, he handles it much better than I do! :)  If I had a penny for every time people asked me how I managed, I'd be rich enough to afford a nanny to help out!

Quite honestly, i'm not sure how we do get by. But we do. Just...

An introduction to my little people...William

I was only 17 when I fell pregnant with William. Needless to say, he was a total surprise! The pregnancy was hideous. At around 8weeks, I started complaining of a sore hip. Within a few days, I was limping. and by 23 weeks had been diagnosed with Symphysis Pubis Dysfunction (SPD) and was given crutches and a lorry load of pain-killers to help me carry on with normal activities. The pain was excruciating, and I was taking regular Co-Codamol.

Around 25/26weeks, I started having very strong Braxton Hicks. At 28+6, halfway to Aberystwyth (to take my sister in law back to university) I started having what I thought we're BHs. In actual fact they were real contractions and so off we went to Aber. Hospital. What a nightmare that was, it's a horrible hospital, built on a hill, so lots of lifts and ramps!

They gave me lots of drugs to stop the contractions, and the 1st shot of Steroids, and 12 hours later the 2nd shot. As Aber. doesn't have a SCBU, they had to transfer me out to another hospital. The one I was booked into, the Countess of Chester Hospital, was full. So Arrowe Park Hospital it was. It apparently took about 3.5 hours to get from Aber to APH. I remember nothing off this, I was high as a kite on God knows what drugs!

The contractions petered out and eventually I was sent home. But that wasnt the end. To cut a long story short, I was in and out of hospital until 32 weeks when my waters started leaking. Baby was head down and I was told 'no swimming, no sex, and rest rest rest' . So I did, and the amniotic sac sealed itself up again. This is where the major issues began!

As the amniotic fluid had stopped leaking, COCH were happy to let me continue with the pregnancy, against my wishes, I wanted my baby out! During all this time, I was suffering terribly with SPD, and at 36 weeks, i fell down the stairs. Cue yet ANOTHER hospital trip. This triggered some concerns, and the following week, at my 37week ante-natal appointment, they decided to keep me in on bed-rest, to monitor my SPD and to give me some different pain relief.

The pain-relief team came round to see me on the ante-natal ward, and the decision was made to give me tramadol. I was reassured that baby wouldnt be dependant. How wrong was that!

At 38+3, I was taken down to be induced. 2 pessaries later...Nothing. The following day I was put on the pitocin drip. After 5hours, and a ceasearean. William Edward was born at 16.33pm, weighing in at 6lb.

Will and I both went up to the ward together. He slept most of the night, although the midwives did keep trying to wake us both so I could feed him. The breastfeeding was going ok. But I was not prepared for how painful it was going to be! :(

Originally, we were kept in to establish breastfeeding, but on the second night, Will started to cry this awful cry, he wouldnt settle, his blood sugars were all over the place. At 4am, the decision was made for him to be taken down to the NNU. I was informed that he was withdrawing from the Tramadol, and he was being put on Morphine Replacement Therapy. I was heartbroken. How could this have happened to my poor baby? Guilt is a terrible thing! I paced the floor for hours and hours, and desperately pumped to get my milk supply in. During which time, Will was given donor milk through a Nasal Gastric tube. the MRT knocked him out, he wouldnt feed and slept constantly. The paeds and OB/GYN consultant talked and decided to give me morphine and it would filter through into my breastmilk and Will would be weaned off like that. It was gonna be hard, but worth it to get him feeding properly!

Evetually, on day 4, we were allowed home. He was a very unsettled baby. He had colic, and cryied constantly for about 12 weeks. We rode it out until 16weeks and then started to wean, thinking my breastmilk wasnt filling him up. It made no difference. Neither did formula. One day, though, he just stopped crying so much.

Fast-forward to his 8month check-up with the Health visitor. He wasnt sitting up by this point. But the HV never followed it up. By 12months, he was rolling round, but still no closer to sitting independantly. I also noticed his feet looked different to my friends children's feet. Sort of twisted in. :/ I took him to the GP, she referred us to a Paeds consultant. I thought nothing of it really, in my mind, worst case scenario was gonna be an operation to correct the positioning of his feet.

But no. The day came round for the consultant appointment. I took Will by myself. Dr Murphy took one look at him and said the words that shattered my world. "I think he has Cerebral Palsy"

There are no words to explain the shock. I didnt even know what Cerebral Palsy was! But I knew it wasnt good. We we're referred to Wrexham Maelor Hospital to see a physiotherapist. She turned out to be an amazing source of support for me, and the only person with any faith in what Will could achieve.

Many tests later, MRI scans, Neurological reports, and assessments later, on the 1st October 2008 William was diagnosed with Cerebral Palsy. Aged 17months and 4 days. The prognosis was grim. How wrong could they be...?

Age 2

 

Age 3

Christmas 2011 in his new wheelchair

Going to Nursery School in his frame

Age 4...my big grown up boy!

Helping with his new baby sister!

Me and my babies, July 2011