ok so we just started this thing have no idea what im doing lol though so far im doing ok lol
james doing well tummy heeling nicely and he doesnt seem to be in any sort of pain which is great
xxx
Sunday, 26 April 2009
god it never rains but it pours huh
isnt it so annoying when you resist and resist and then when you need it u get a big up yours and you have to fight like admitting you need help in the first place isnt hard enough you then have to beg!!!!!!
it really makes me mad
so tomorrow james is going into hospital to get his peg tube changed to a button am a bit nervous not as nervous as when he first got it done but still a little nervous
i hope everyones kiddies are doing well and all the angels are behaving themselves and not causing too much havoc
love to u all xxx
isnt it so annoying when you resist and resist and then when you need it u get a big up yours and you have to fight like admitting you need help in the first place isnt hard enough you then have to beg!!!!!!
it
so tomorrow james is going into hospital to get his peg tube changed to a button am a bit nervous not as nervous as when he first got it done but still a little nervous
i hope everyones kiddies are doing well and all the angels are behaving themselves and not causing too much havoc
love to u all xxx
story so far
hi everyone, i am james's mum (the little boy in the pics) james is 3 years old and has a condition called lissencephaly, which means his brain hasnt developed properly and he also has epilepsy xxxxx
James Stephen Wilson was born on 16th may 2005 (4 weeks premature) weighing 4lb10oz and only 30 cm. James was born 4 weeks early due to a placental abruption and spent his first week in neonatal care due to his blood sugar levels and the fact he was deprived of oxygen at birth.
Due to the deprivation of oxygen at birth James had a routine ultrasound brain scan which revealed small white patches at the sides of his brain and so was sent for a follow up mri scan at 6 weeks.
At 8 weeks old we received the results of his mri which showed the white patches had gone but he had a smooth brain, Lissencephaly, at the time we were told that they didn't know what this meant.
At 5 months old James began to have Infintile spasms (which is the infant form of epilepsy) our gp referred us to the sick kids a&e and they sent us for an eeg, which revealed his electrical brain activity, and we then spoke to a consultant to whom i explained everything that had happened since James was born and she explained the details of James's condition to us properly.
Lissencephaly basically means that the brain is smooth not completely but quite, the long term of this condition varies from person to person, James is on the severe end of the scale but not the worst, he is 3 next month and is still unable to sit, crawl, walk, grasp with hands and talk and so far especially with sitting, walking and talking shows little sign of doing so. Thats not too say that he wont but at the moment it seems unlikely.
So he also has epilepsy which for me is the hardest part of his whole situation watching my baby have a fit is the most devastating thing i have ever seen.
Recently (1.04.08) we found out that james is in non-convulsive status, which basically means he is having continual fits in his brain and we cant see them so we are due back to the hospital to have another eeg to see if the recent increase in his medicine has controlled things or if we need to change tactics and try steroids so i will update this site after then and let u know what is happening next
http://www.caringbridge.org/visit/jameswilson05
feel free to share ur own stories or comments xx
4/2/08 - james changed on to his new epilepsy medicine on friday and so far its not bad his sleep is all over the place (nothing new there) hes quiet and kranky but hopefully in 8 weeks when hes settled on the full dose things will get better (not the first time ive said this about medicine ) but we will see xxxxx
15/2/08 - well what a nightmare we had james got up and two am and bawled the house down for 3 hours solid ended up phoning nhs 24 and then going to the sick kids to get him checked over, as usual nothing wrong so prob just his medication so then had to wait hours for someone from the hosp to phone then got told its prob just side effects that they were expecting but no-one bothered to tell me or dad and now we have to just wait and see what happens over the next few weeks and thats it !!!!!!!!!!
24.2.08 - well james seems to be settling on the meds not as grumpy but still clingy and has spent most nights in bed with us which isnt so good for ma back lol sardine in a can springs to mind xxxx
5.3.08 - well i crossed ma fingers and got a big dose of shoulda kept ma mouth shut in return !!!!! James been up and down like a yoyo and now we have the small concern of his development seems to be sliding backwards, his vocalisation is very poor and he doesnt want contact just wants to be left on his own and then crys when u leave the room and im finding it all so ..... i dont know distressing i suppose i just wish i could do more for him and i cant
29/3/08 - well there has been some improvement with james he is much more vocal but is still very tired a lot then doesnt sleep at night and has his moments where he just wants to be left alone but we got hosp on tuesday so well see what happens then, his fits are still all over the place so not sure what we'll do next but we shall see
24/3/08 - had our fundraising race night last night and we raised a whopping £1239.10 which was fab have about £500 of sponsors for the skydive in june but am gonna get more more more lol anyone wants to sponsor just drop me a line xxxxxxxxxxxxxxxxx
1.4.08 - well my poor wee baby boy, went to hosp today and ended up getting an eeg and it turns out all the changes are not the medication it is due to the fact that james is having continuous seizures in his brain that we cannot see so we have to go back to the hosp in the morning and see the consultant to see what we gonna do next x
7.4.08 - well james seems to have improved seems happier anyway still gotta go back and get another eeg as the proof is in the pudding lol, wanted to ask u all also to send loads of love to baby karl who is having a really hard time just now, big kisses to u wee man thinking of u and hope u feel better soon loads of love to you and all ur family xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
10.04.08 - have just started the caringbridge page for james so bear with me till i get all his story in xxxxx
12.4.08 - well only four days till we back at hosp and i wish it would hurry up neither steve or i are sleeping properly and james isnt much better hes up and down like a yoyo, but i dont think his eeg will be much different from the last one although i hope im wrong cause the last thing i want is for him to have to get steroids unless it absolutely necessary, but hes tired all the time and really sobbing at the least wee thing and it breaks ma heart to see him so miserable xxxx just want to thank u all for all the support and friendship u have given it means so much to us all xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
12.4.08 - caringbridge site ready just gonna do the journal day by day or near it maybe week to week please go on and sign the guestbook many thanks xxxxxxxxxxxxxxx
16.4.08 - well we were back at hosp today for eeg and he still in non convulsive status so they took blood and swabs and we need to get a urine sample and then he'll go in on monday and get started on steroids !!!!!!
21.4.08 - well thats the first jag over and done with thickish needle big jab in the thigh loads of screaming but not for long and hes fast asleep now so hopefully if his jag tomorrow goes well and he stays perky we will hopefully get him home yippee xxxxxxxxxxxxxxxxxxxxxxxx
24.4.08 - well day five tomorrow and well its no great lol he screams the place down with every jag and hes tired grumpy clingy his feet and hands are very hot. we back at the hosp tomorrow so ill speak to the doc and see what she thinks but its all prob just side affects so just have to stick with it and take each day as it comes and see where it takes us xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
30.4.08 - well today is day 10 on the steroids so he had an eeg to see how things are coming along and his electrical brain activity is heaps better, still not completely back to normal but way better than it was a couple of weeks ago so i feel a lot better about all the stress he going through with the injections if they are actually working so fingers crossed we are on the up xxxxxxxxxxxxxxxxxxxxx
8.5.08 - nothing much changed at the moment waiting on hosp arranging another eeg but day by day there are tiny little hints of ma boy coming back through although he still very crabbit but he being weaned off the steroids so after tomorrow hell get them every second day till friday the 16th and thats his last one yippee however its on his birthday which is a bloody shame but still last one so will let u know what happening when he has another eeg and we speak to doc about what happens next xxxxxxxxxxxxxxx
14.5.08 - well james is 3 on friday and he also gets his last injection on friday too thank god!!!!!!!!! so far all is ok he hasnt had a fit for 2 weeks which is fab he is still a bit cranky but getting better a few smiles and giggles which is lovely back to see the doc on tuesday and another eeg at end of the month so fingers crossed all stays well once he is off the steroids x ps have started a group on bebo so if ur on bebo join xxxxx http://www.bebo.com/Profile.jsp?MemberId=6681721329
18.5.08 - well things have been better he is smiling a lot more and screaming at his cartoons again which he hasnt done since christmas so it has been lovely to hear hes not completely recovered yet still crabbit a lot but its improving and hes still eating like a horse honestly i have never seen anyone so small eat so much food its frightening hes eating 2 weetabix for breakfast followed by two yoghurts and he has a tin of pasta for lunch and two puddings a snack in the afternoon and then a ready meal and a pudding for tea hes a wee gannit lol but i like him having an appetite
24.5.08 - Such a feelin's coming over me
There is wonder in most every thing I see
Not a cloud in the sky, got the sun in my eyes
And I won't be surprised if it's a dream
Everything I want the world to be
Is now coming true especially for me
And the reason is clear, it's because you are here
You're the nearest thing to heaven that I've seen
I'm on the top of the world looking down on creation
And the only explanation I can find
Is the love that I've found ever since you've been around
Your love's put me at the top of the world
Something in the wind has learned my name
And it's telling me that things are not the same
In the leaves on the trees and the touch of the breeze
There's a pleasin' sense of happiness for me
There is only one wish on my mind
When this day is through I hope that I will find
That tomorrow will be just the same for you and me
All I need will be mine if you are here
lol i am a happy bunny just now hence the song lol, james has been on extreme makeover personality edition lol the steroids have finished and i have my boy back the one that lit up when he seen me and smiled and giggled all day long and its fab fab fab although i best not get too carried away cause as i now well know it can go in a heartbeat but its great went to the park today and had him on the swing and he was loving it if i can ill put the video i took on here xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
29.5.08 - all is thankfully still pretty well so just the day to day stuff to deal with xxxxxxxxxxxxxxxxx
8.6.08 - well things have been no bad he's still a happy bunny which is the main thing lol his eating and sleeping leave a lot to be desired but i guess u cant have it all ways can u, but we'll muddle through and ge there in the end, hes lost all his steroid weight so he back to being a skinny wee rat lol he all bones again although he was hard carrying around i kinda liked him having the extra weight about him he really suited it lol
15.6.08 - well poor james has spent the weekend in hospital but he got home today thankfully, all was well till friday night when he started having big bad fits followed by wee bad fits, they think its just been a viral infection and he hasnt had any more fits since 6am saturday morning thankfully xxxxx
also ive got 4 weeks till my skydive on 12 july and id really appreciate sponsors so if u can i have a paypal badge on my profile but if u dont use paypal and would like to sponsor me then let me know and ill pm u my address xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
20.6.08 - had james day out today with the nursery but there wasnt much to do for james, but we had fun anyway he had a little fit today and he hasnt been eating had 2 spoons of weetabix this morning but he has drank 2 cups of juice so i guess i can cope with that x
1.7.08 - And the merry go round begins once again lol although its not too merry fits been back every fortnight and james getting quieter again so got an eeg on thursday although it may be nothing after the last time better to be safe than sorry am not taking any chances this time, also getting referred to a dietician to get some help with his eating and possibly a swallow xray (cannae mind the name of it lol) to check for reflux so its all go the now xxx
7.7.08 - still waiting for results of eeg but hoping that no news is good news xx nothing else can really happen till we know what the crack is with that but all is well at home so thats always a bonus xxxxxxxxxxxxxxxxxxxxxxxxxx
12.7.08 - well am gutted our skydive has been postponed till the 17th august because the weather has been so bad today but we will get it done eventually lol, james is ok just now also xxx
16.7.08 - finally got the results of his eeg and hes not in status again so thats fab so just waiting on his new med plan coming and its another change of med but its back to liquid and off the bloody tablets so thats all good and he seems to be ok just now which is good too x
25.7.08 - well what a week we have had, monday james had loads of seizures and spent the night in hosp, yesturday he was really unwell so took him to the docs and we believe he has been possibly exposed to chicken pox which could be why he is not well so he had to have an injection because he was recently on steroids and his immune system isnt totally back yet and if he gets spots he may have to go into hosp (depending on how his symptoms are) and get more meds to help him fight them so fun and games lol so all we have to do now is wait for spots xxx
13.8.08 - well no spots so i reckon thats it nae chicken pox lol am so glad, so nothing much new to report still having seizures but still in middles of changing meds so will just have to grin and bear till the transition is complete and see what happens then, and 1 week today james starts pre-school at oaklands which is our local special school, i cant believe time has gone by so quickly and my beautiful wee 4lb baby is now nearly 3 and a half and off to big boy nursery it makes me sad and happy at the same time its wierd, but its a great wee place and hes been going to the playgroup on a friday for a while now so he knows all the staff so am sure he'll settle in well xxxx
20.8.08 - hi everyone not much to say the now cause not much happening, fits been not too bad lately a few wee ones and one medium so thats not bad, starting pre-school at oaklands tomorrow, mummy is very nervous lol.
also she did her skydive on sunday past and we all went to watch it was fab and i am so proud of her so we just need to collect all the money in and then we can start looking through the catalogues to see what they gonna get me xxxx
1.9.08 - well second week of nursery is upon us and he still seems eager (up at 6 am lol) he also seems to have perked up a bit which is fab although he did have a feww fits yesturday morning and had a wee nap then was right as reign
got seizure clinic on tuesday so will see what that brings and finally an appointment at the eye pavillion seems for some reason we were missed as we should be going every 3 months but we now have an appointment xxxx
7.9.08 - well my little bubba has the cold or some sort of illness, slept loads since yesturday and is very tetchy so we are lying in mummy's bed cuddled up wee lamb, am just keeping an eye cause he seems floppy compared to normal hopefully just becasue he is unwell but well see what the week holds xxxx
nothing much new happening just the same old lol but we are finally picking up his new wheelchair pram on tueday and finally getting rid of that piece of nonsence he has just now so thats always music to my ears lol xxx
8.9.08 - well he is all better today ???? very strange, bloody seizures are creeping back in though we are back to everyday which we havent had since may when he went on steroids so am not happy to say the least
getting his new wheelchair pram tomorrow which i am looking forward to
i never really said much about our last seizure clinic appointment so it went well we are weaning him off topiramate which is good cause i really dont like it, still waiting on our results for lis1 gene (have been for nearly a year) possibly gonna try the ketogenic diet once he off the topiramate and see if that makes a difference with the seizures also looking into the vagal nerve stimulator which i am not keen on as it involves an operation and i feel he is too young for an operation so we shall save that as a last resort i think..
i think that was really it for now xxxx
12.9.08 - I HATE BLOODY SEIZURES
12.9.08 - sorry just had to get that out my system, everyday again and he woke through the night and when i went to lie with him to get him back to sleep he had 2, its a nightmare they not massive ones but they look so intense and he is wrecked after them
not much else happening the now waiting to hear about getting sent for tests for reflux hopefully not to long xxxx
14.9.08 - well i have to say we have had a lovely weekend still having seizures but in between times he is happy and smiley and its so nice to see i wonder if the reduction in topiramate is letting my lovely baby shine through again (fingers crossed) but whatever it is i am happy xxxxxxxx
16.9.08 - why does everything have to be so difficult, i feel like i banging my head against a brick wall some days i really do, wee man appears to have what we believe is reflux could explain so much right enough so have to start harassing people for appointments to get to the bottom of it all.
social work are a joke have taken them 3 weeks to get back to me and after all that surprise surprise there is nothing they cando to help with housing so tuff basically, so am gonna phone a couple of carers organisations tomorrow to see what they have to say cause i fed up and the stairs are becoming a challenge and lifting and laying in the house isnt easy either so ill get there i really will just gonna have to do some serious fighting ill keep u posted on my crusade lol xxxxx
18.9.08 - well phoned some orgasnisations and still nae joy xx so i have no idea what to do now but cry xxx
wee man still troubled and is a very sad clingy wee boy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
22.9.08 - well weekend was ok a bit perkier which is always good lol sunday night a disaster lol was awake on and off and screaming the place down
but hey ho
still loving nursery which is fabby
still waiting to hear from hospital about reflux so ill call tomorrow and see whats happening
hope your all well xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
28.9.08 - well things been not to bad gaviscon seems to be working along with the omeprazole maybe to soon to really tell but he seems calmer so fingers crossed
still having daily seizures but hey ho
eating been a bit off the last couple of days again so not great but plodding along as always xxxxxxxxxxxxxxxxx
hope everyone all well xxxxxxxxxxxxxxxxx
11.10.08 - been a while since i updated so here goes, have stopped gaviscon and replaced with domperidone, waiting on appointment with gi team and dietician for a chat about whats happening and an endoscopy, feel he needs more fluids and easier med times so looking at ng tube to start hopefully followed quickly by tummy tube, seizures a nightmare once again still daily and loads yesturday had to give new rescue med paraldehyde after 16 one after the other so most of day was spent sleeping it off poor lamb, other than that he is well getting the flu jab next week as am i lol so thats us for now xxx
17.10.08 seizures seem a bit more settled of late still daily but only 3/4 a day and no paraldehyde since the first time, still waiting to hear about appointments
in general james is very stressed just now crying a lot and i think its the meds med times are a major struggle just now and i mean major it is heart wrenching having him screaming so much each time he has to get them and the poor mite sees it coming and cries before u even start its a shame
eating and drinking still a bit ok a lot of a nightmare especially drinking mega fighting there to and we used to use a syringe as back up when he wont use cup but as u can imagine thats a no go due to all the syringe medicines so another major fight there too
hope everyone else well xxxxx
25.10.08 - ok so a wee update, gi team been on the phone going in on monday at 1030 for a birium then to the ward for being observed and then we shall see what happens next, speech therapist and nurse from school wrote a fabby letter supporting us and our wish to not get an ng tube for james and move straight to gastrostomy, so fingers crossed they listen to me and see where i am coming from!!!!!!!
maybe a lot to ask for but we shall see james is very tactile defensive in his hands face mouth and orally so i feel an ng will cause him more distress than he currently experiencing which is sometimes hard to believe he could be any more stressed but that will tip him and us over the edge i believe, but ill keep you posted xxx
otherwise he is doing ok, seizures been increased the last couple of days but he has been happy enough inbetween times so i guess you cant have everything can you, but we have been helping his nana move house this week so i guess he may have been feeling some of the stress from that the day we actually moved he was very distressed for an hour or so, and he has had many late nights this week so i think the tiredness isnt helping but hopefully things will settle this week now that they are in the new house (fingers crossed lol)
nothing much else to report im afraid, not that all of the above isnt enough to be getting on with lol hope everyone else is doing well xxxxxxxxxxxxxxxxxxx
31.10.08 - ok so a lot to update this time lol
sunday seen us in a and e following a series of tc seizures but we got home once he was ok which was great
monday morning we started with a barium and along to the ward where we staying in for observations of his eating and drinking which as u can imagine he was on top form eating brilliantly taking meds no problem but fluid was very poor, had a lot of small seizures over the days we were in and on wednesday teatime he had another baddy and ended up getting paraldehyde which knocked him out for 16 and a half hours straight which as u can imagine worried me a lot especially as he was 21 hours without eating or drinking, so i was worried sick as u can imagine, so we got epilepsy nurse to come see him also and they have now started him on phenytoin which he seems to be tolerating well and the gi team have decided to go ahead with gastrostomy which they will be doing on thursday 6th november which is bloody quick and i am now full of nerves about it but for ma wee darling james it is by far the best decision so its a good thing really will post after op at some point to let you know he is well xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
hope everyone else is well
love marisa stephen and james x
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
9.11.08 - hello everyone, so thursday 6th james went into hosp to have his tummy tube operation and all went well, mummy was very upset when he got the anasthetic but who wouldnt be, but an hour later we got the call to go back up and get him and the wee soul was so upset bless him, he cried for a good couple of hours and lay in ma arms till he fell asleep, but he slept plenty which was a good thing, friday he was better but u could see he was still in a lot of pain, but he did really well and was so brave even managed smiling which was lovely to see, saturday he was so much brighter ate all his breakfast and was tolerating the extra feeds in the tube and the meds which was bliss, however, he had a lot of seizures about 40 over the day had to have his paraldehyde and slept for a good five hours which isnt as bad as the last time he had it and woke up at tea-time and ate his tea really well but had another cluster of seizures shortly after but we didnt give him his paraldehyde as i didnt want him zonked again but he stopped and had a good nights sleep which he so badly needed and today he came home yippee xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
xxxxxxx
11.11.08 - now on myspace http://www.myspace.com/lissencephalyawareness08
26.11.08 - Sorry i havent updated for a while but been busy and nothing out of the ordinary to report really, james tummy is healing very nicely and the feeds are going well, meds are a dream its actually scary how much simpler the tube has made things, i no longer panic when he wont eat or drink as i know i can still get him sorted without stressing him out.
he has had a cold and an ear infection but after antibiotics is well on the mend so thats always a bonus xxxxx
seizure wise nothing much has changed after starting phenytoin i was very hopeful and despite some really rough days resulting in paraldehyde they seemed to slow down and only saw a couple a day but out of nowhere they are back with some major attitude i am hoping its just the levels have dropped due to him being unwell but deep down i know its just another medicine that aint gonna work, i hate feeling so negative about things but sometimes i cant help myself when it comes to the seizures i feel so helpless and i just wanna make them stop and its devastating to think that may never happen and everytime we try a new medicine i am filled with hope and then like a pin in a balloon it pops and reality kicks back in xxxxx
3.12.08 - ok so tomorrow james going into hosp to get yet another loading dose of phenytoin levels are still too low and he had double figure seizures for the last 3 days xx
so this was decided yesturday at the seizure clinic as he kicked off big style then they took blood and we got results this morning so not sure how long he gonna be in hopefully not long but they really wanna get the levels theraputic so im assuming hell be in till thats achieved so fun and games as usual xxx
all this and im still not done xmas shopping lol not even close what a nightmare xxxx
wanna send big hugs and kisses to declan, zane, aiden, gabriel, melaina and little adelaine i know some of u are poorly so am hoping u all start feeling better soon especially gorgeous dec who is really getting it rough just now xxx love u little man sooo much xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
10.12.08 - still in hosp levels up a bit but still not enough had an eeg yesturday so waiting to see what thats saying otherwise he ok still fitting same as always but he been a bit chirpier so thats always a bonus, talking seriously about doing keto diet as meds just arent doing it at all, started reducing his keppra as its doing nothing same as all the others xxxxxxx
hope everyone else is well xxxxxxxxxxxx
15.12.08 - ok so levels today are up to 13 woohoo finally theraputic now all we have to do is keep them there for the next 2 weeks to see if its gonna work, so seeing consultant tomorrow and see if we go home or what xxxxxx thank u all for ur lovely messages so much appreciated xxxxxx
19.12.08 -
I AM HOME LOL xxxxx gotta go back on monday to get blood tests done to check levels are still up then ward review beginning of january and usual seizure clinic but am home for santa coming yippee xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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24.12.08 - ok blood tests up a bit again but increased normal dose and gave another loading dose back on monday for more bloods xxx hope u all have a very merry xmas xxxxxxxx
29.12.08 - and the levels are back down AGAIN so ANOTHER loading dose and back monday for more bloods xxx hope u all have a lovely new year xx and we'll see u in 2009 xx stay safe xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
7.1.09 - got bloods done on monday and levels back up to 9 still under where they need to be so back on friday for more bloods to see if the loading dose helped xx was back to school on monday and tuesday and now off again as i am not well think its just viral but high temp and bad cough xx apparently there are chicken pocks going round school so lets hope thats not whats wrong with me xxxxxx
9.1.09 - james had a very bad day today had a lie in and was very sick after breakfast and his meds so had to do meds again xx then had 4 jerky fits and had to give him his rescue med so i think he was awake for about an hour then asleep till 7 pm this evening poor bubby xxx sending lots of love to his pals zane gabriel and aiden who are all poorly just now too lots of love boys and i hope u all get well soon xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
14.1.09 - hi all james levels were thersaputic monday but going for blood tests again on friday to see if they still are
saying that he is having a very rough time just now has had his rescue med twice since 10 oclock last night and we are waiting on one more to make it 3 hoping it doesnt happen xxxx
please keep james little friend melaina in ur thoughts she is in hospital and is critical at the moment some much needed prayers for this beautiful little girl
http://www.caringbridge.org/visit/melainacunningham
16.1.09 - got blood tests done this morning so just waiting to see what the results are xx
not much else happening seizures have settled from the other day thankfully just hoping that doesnt happen again as i really didnt like having to watch him constantly fit like that it was very upsetting xxxx
please remember to say a prayer for melaina who is more stable but still not out of the woods yet xx love ya wee girl xxx
http://www.caringbridge.org/visit/melainacunningham
19.1.09 - finally got results back on saturday night i am starting to get so cross with them i really am i try my best to stay calm but i will end up losing the plot with them lol
so levels are down to 8, not that they are doing anything about it mind waiting on epilepsy nurse calling hahahahahahahahahahahahahahahahahaha sorry just had to laugh xx otherwise he is ok still fitting every day not had any jerky ones since last week tho thank goodness xxx
want to say a very special shout to our beautiful girl melaina xxx get well soon sweetie sending you loves and kisses www.caringbridge.org/visitmelainacunningham
Also want to send love to deccy doos mummy caroline for being such a fabby friend and helping us get through all the stress we appreciate u so much especially when u going through such a hard time urself please just know we love you and think of u and angel dec every single day xxxxxxxxxxxxxxxxxxxxx
23.1.09 - things ok here at the moment still fitting daily lol some things never change xx been up a lot through the night crying and whimpering which hasnt been nice and means he has ended up in our bed which definitely isnt nice lol having someones knees embedded in ur back for several isnt great lol
but on a brighter note we are waiting final confirmation to say we have a council house which is fab its on the ground floor and means i can continue to go to the same gp which is the best part xx
want u all to continue praying for our little friend melaina who is up and down but thankfully stable having a picc line put in today xxxxx
www.caringbridge.org/visitmelainacunningham
1.2.09 - ok fun and games this end james fits have been through the roof all week especially thursday and friday when the jerky ones creeped in xx
i think he now has an ear infection as yesturday and today he has been pulling at his ear a lot xx
on a very good note we are officially getting our council house yippee not sure how long work is gonna take but we picking up the keys on wednesday oh and caz we are buying a beautiful new sofa with built in bed just for u xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
12.2.09 - ok so so far so good on the moving front but james has been at school all week so the big test is getting things done next week when he on his hols hehehehehehehehe
otherwise james remains the same fits up and down mainly up i have to say he has also been very quiet recently but perhaps all the commotion of moving is whats making him quiet
had a meeting with his consultant yesturday to discuss meds and the keto diet, meds arent working so we are going to try the keto diet having a few probs with that just now may have to go to glasgow instead which is ludicrous but we shall see xxx
26.2.09 - hello sorry we havent updated for a while been so busy moving lol but we in now still sooooooo much to do but we will get there eventually lol
james been up and down and was back in hosp for a couple of days again just got out today just these damn fits and his stupid rescue med not doing its job but par for the course i guess xxx
hope everyone else keeping well xxx
sending special big hugs to melaina who has been taking backward steps poor soul xxxxxxxxxxxxxxxxxx
27.2.09 - spent 3 hours today sitting at the eye pavillion how naffed off am i xxxxxx
and then they tell us they want jimmy jams to wear glasses HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA for 6 months HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA
sorry i think that is funny and i have no idea how we gonna get jimmy jams to wear the things but hey ho xxxxxxxxx
1.3.09 - james got his glasses today have posted a pic so u can see xxx apart from still bein g quiet he is doing ok xxxxxx
16.3.09 - havent updated for a while again lol not sure where to start, move went well still loads to do but its looking much better and james room is all done so thats the most important room taken care of xxxxx
jame son the other hand is having a crappy time, been really quiet since his last stay in hosp and been up and down with temps and fits and been having really bad dioreah since last thursday doesnt seem to want to stop went back to docs today and took a sample so we'll see what it brings xx
hope everyone doing well xxxx i know we dont write in ur guestbooks much but we do read all ur updates xxx and think of u all often xxxxxxxxxxxxxx
19.3.09 - well the runs have returned ??? i dont get it i really dont should hopefully get test results tomorrow and see where we go from there xx
also want u all to pray for our little friend melainas parents our beautiful melaina passed away today xx
i have to say i am really struggling just now all these beautiful precious little kids are too young to leave and yet they still go and i get so scared when i look at my beautiful little boy cause u just dont know whats round the corner and it terrifies the life out of me it really does x i have shed so many tears for these little kids i just dont know if i have the strength anymore i really dont i cant bare it i really cant xxxxxxxxxxxxxxxxxxxxxxxx
13.4.09 - been a while since i updated again which i apologise for but i guess in a lot of ways there isnt much to say, still fitting every day, still a grumpy wee so and so lol
he is doing well though sitting is doing great has his bad wobbly days and falls over a lot but getting his helmet soon thankfully,
night time isnt great again i reckon he has been in ma bed every night either before he falls asleep or later on for the last week maybe 2 which isnt great for ma poor wee back but what do you do
James Stephen Wilson was born on 16th may 2005 (4 weeks premature) weighing 4lb10oz and only 30 cm. James was born 4 weeks early due to a placental abruption and spent his first week in neonatal care due to his blood sugar levels and the fact he was deprived of oxygen at birth.
Due to the deprivation of oxygen at birth James had a routine ultrasound brain scan which revealed small white patches at the sides of his brain and so was sent for a follow up mri scan at 6 weeks.
At 8 weeks old we received the results of his mri which showed the white patches had gone but he had a smooth brain, Lissencephaly, at the time we were told that they didn't know what this meant.
At 5 months old James began to have Infintile spasms (which is the infant form of epilepsy) our gp referred us to the sick kids a&e and they sent us for an eeg, which revealed his electrical brain activity, and we then spoke to a consultant to whom i explained everything that had happened since James was born and she explained the details of James's condition to us properly.
Lissencephaly basically means that the brain is smooth not completely but quite, the long term of this condition varies from person to person, James is on the severe end of the scale but not the worst, he is 3 next month and is still unable to sit, crawl, walk, grasp with hands and talk and so far especially with sitting, walking and talking shows little sign of doing so. Thats not too say that he wont but at the moment it seems unlikely.
So he also has epilepsy which for me is the hardest part of his whole situation watching my baby have a fit is the most devastating thing i have ever seen.
Recently (1.04.08) we found out that james is in non-convulsive status, which basically means he is having continual fits in his brain and we cant see them so we are due back to the hospital to have another eeg to see if the recent increase in his medicine has controlled things or if we need to change tactics and try steroids so i will update this site after then and let u know what is happening next
http://www.caringbridge.org/visit/j
feel free to share ur own stories or comments xx
4/2/08 - james changed on to his new epilepsy medicine on friday and so far its not bad his sleep is all over the place (nothing new there) hes quiet and kranky but hopefully in 8 weeks when hes settled on the full dose things will get better (not the first time ive said this about medicine ) but we will see xxxxx
15/2/08 - well what a nightmare we had james got up and two am and bawled the house down for 3 hours solid ended up phoning nhs 24 and then going to the sick kids to get him checked over, as usual nothing wrong so prob just his medication so then had to wait hours for someone from the hosp to phone then got told its prob just side effects that they were expecting but no-one bothered to tell me or dad and now we have to just wait and see what happens over the next few weeks and thats it !!!!!!!!!!
24.2.08 - well james seems to be settling on the meds not as grumpy but still clingy and has spent most nights in bed with us which isnt so good for ma back lol sardine in a can springs to mind xxxx
5.3.08 - well i crossed ma fingers and got a big dose of shoulda kept ma mouth shut in return !!!!! James been up and down like a yoyo and now we have the small concern of his development seems to be sliding backwards, his vocalisation is very poor and he doesnt want contact just wants to be left on his own and then crys when u leave the room and im finding it all so ..... i dont know distressing i suppose i just wish i could do more for him and i cant
29/3/08 - well there has been some improvement with james he is much more vocal but is still very tired a lot then doesnt sleep at night and has his moments where he just wants to be left alone but we got hosp on tuesday so well see what happens then, his fits are still all over the place so not sure what we'll do next but we shall see
24/3/08 - had our fundraising race night last night and we raised a whopping £1239.10 which was fab have about £500 of sponsors for the skydive in june but am gonna get more more more lol anyone wants to sponsor just drop me a line xxxxxxxxxxxxxxxxx
1.4.08 - well my poor wee baby boy, went to hosp today and ended up getting an eeg and it turns out all the changes are not the medication it is due to the fact that james is having continuous seizures in his brain that we cannot see so we have to go back to the hosp in the morning and see the consultant to see what we gonna do next x
7.4.08 - well james seems to have improved seems happier anyway still gotta go back and get another eeg as the proof is in the pudding lol, wanted to ask u all also to send loads of love to baby karl who is having a really hard time just now, big kisses to u wee man thinking of u and hope u feel better soon loads of love to you and all ur family xxxxxxxxxxxxxxxxxxxxxxxxxx
10.04.08 - have just started the caringbridge page for james so bear with me till i get all his story in xxxxx
12.4.08 - well only four days till we back at hosp and i wish it would hurry up neither steve or i are sleeping properly and james isnt much better hes up and down like a yoyo, but i dont think his eeg will be much different from the last one although i hope im wrong cause the last thing i want is for him to have to get steroids unless it absolutely necessary, but hes tired all the time and really sobbing at the least wee thing and it breaks ma heart to see him so miserable xxxx just want to thank u all for all the support and friendship u have given it means so much to us all xxxxxxxxxxxxxxxxxxxxxxxxxx
12.4.08 - caringbridge site ready just gonna do the journal day by day or near it maybe week to week please go on and sign the guestbook many thanks xxxxxxxxxxxxxxx
16.4.08 - well we were back at hosp today for eeg and he still in non convulsive status so they took blood and swabs and we need to get a urine sample and then he'll go in on monday and get started on steroids !!!!!!
21.4.08 - well thats the first jag over and done with thickish needle big jab in the thigh loads of screaming but not for long and hes fast asleep now so hopefully if his jag tomorrow goes well and he stays perky we will hopefully get him home yippee xxxxxxxxxxxxxxxxxxxxxxxx
24.4.08 - well day five tomorrow and well its no great lol he screams the place down with every jag and hes tired grumpy clingy his feet and hands are very hot. we back at the hosp tomorrow so ill speak to the doc and see what she thinks but its all prob just side affects so just have to stick with it and take each day as it comes and see where it takes us xxxxxxxxxxxxxxxxxxxxxxxxxx
30.4.08 - well today is day 10 on the steroids so he had an eeg to see how things are coming along and his electrical brain activity is heaps better, still not completely back to normal but way better than it was a couple of weeks ago so i feel a lot better about all the stress he going through with the injections if they are actually working so fingers crossed we are on the up xxxxxxxxxxxxxxxxxxxxx
8.5.08 - nothing much changed at the moment waiting on hosp arranging another eeg but day by day there are tiny little hints of ma boy coming back through although he still very crabbit but he being weaned off the steroids so after tomorrow hell get them every second day till friday the 16th and thats his last one yippee however its on his birthday which is a bloody shame but still last one so will let u know what happening when he has another eeg and we speak to doc about what happens next xxxxxxxxxxxxxxx
14.5.08 - well james is 3 on friday and he also gets his last injection on friday too thank god!!!!!!!!! so far all is ok he hasnt had a fit for 2 weeks which is fab he is still a bit cranky but getting better a few smiles and giggles which is lovely back to see the doc on tuesday and another eeg at end of the month so fingers crossed all stays well once he is off the steroids x ps have started a group on bebo so if ur on bebo join xxxxx http://www.bebo.com/Profil
18.5.08 - well things have been better he is smiling a lot more and screaming at his cartoons again which he hasnt done since christmas so it has been lovely to hear hes not completely recovered yet still crabbit a lot but its improving and hes still eating like a horse honestly i have never seen anyone so small eat so much food its frightening hes eating 2 weetabix for breakfast followed by two yoghurts and he has a tin of pasta for lunch and two puddings a snack in the afternoon and then a ready meal and a pudding for tea hes a wee gannit lol but i like him having an appetite
24.5.08 - Such a feelin's coming over me
There is wonder in most every thing I see
Not a cloud in the sky, got the sun in my eyes
And I won't be surprised if it's a dream
Everything I want the world to be
Is now coming true especially for me
And the reason is clear, it's because you are here
You're the nearest thing to heaven that I've seen
I'm on the top of the world looking down on creation
And the only explanation I can find
Is the love that I've found ever since you've been around
Your love's put me at the top of the world
Something in the wind has learned my name
And it's telling me that things are not the same
In the leaves on the trees and the touch of the breeze
There's a pleasin' sense of happiness for me
There is only one wish on my mind
When this day is through I hope that I will find
That tomorrow will be just the same for you and me
All I need will be mine if you are here
lol i am a happy bunny just now hence the song lol, james has been on extreme makeover personality edition lol the steroids have finished and i have my boy back the one that lit up when he seen me and smiled and giggled all day long and its fab fab fab although i best not get too carried away cause as i now well know it can go in a heartbeat but its great went to the park today and had him on the swing and he was loving it if i can ill put the video i took on here xxxxxxxxxxxxxxxxxxxxxxxxxx
29.5.08 - all is thankfully still pretty well so just the day to day stuff to deal with xxxxxxxxxxxxxxxxx
8.6.08 - well things have been no bad he's still a happy bunny which is the main thing lol his eating and sleeping leave a lot to be desired but i guess u cant have it all ways can u, but we'll muddle through and ge there in the end, hes lost all his steroid weight so he back to being a skinny wee rat lol he all bones again although he was hard carrying around i kinda liked him having the extra weight about him he really suited it lol
15.6.08 - well poor james has spent the weekend in hospital but he got home today thankfully, all was well till friday night when he started having big bad fits followed by wee bad fits, they think its just been a viral infection and he hasnt had any more fits since 6am saturday morning thankfully xxxxx
also ive got 4 weeks till my skydive on 12 july and id really appreciate sponsors so if u can i have a paypal badge on my profile but if u dont use paypal and would like to sponsor me then let me know and ill pm u my address xxxxxxxxxxxxxxxxxxxxxxxxxx
20.6.08 - had james day out today with the nursery but there wasnt much to do for james, but we had fun anyway he had a little fit today and he hasnt been eating had 2 spoons of weetabix this morning but he has drank 2 cups of juice so i guess i can cope with that x
1.7.08 - And the merry go round begins once again lol although its not too merry fits been back every fortnight and james getting quieter again so got an eeg on thursday although it may be nothing after the last time better to be safe than sorry am not taking any chances this time, also getting referred to a dietician to get some help with his eating and possibly a swallow xray (cannae mind the name of it lol) to check for reflux so its all go the now xxx
7.7.08 - still waiting for results of eeg but hoping that no news is good news xx nothing else can really happen till we know what the crack is with that but all is well at home so thats always a bonus xxxxxxxxxxxxxxxxxxxxxxxxxx
12.7.08 - well am gutted our skydive has been postponed till the 17th august because the weather has been so bad today but we will get it done eventually lol, james is ok just now also xxx
16.7.08 - finally got the results of his eeg and hes not in status again so thats fab so just waiting on his new med plan coming and its another change of med but its back to liquid and off the bloody tablets so thats all good and he seems to be ok just now which is good too x
25.7.08 - well what a week we have had, monday james had loads of seizures and spent the night in hosp, yesturday he was really unwell so took him to the docs and we believe he has been possibly exposed to chicken pox which could be why he is not well so he had to have an injection because he was recently on steroids and his immune system isnt totally back yet and if he gets spots he may have to go into hosp (depending on how his symptoms are) and get more meds to help him fight them so fun and games lol so all we have to do now is wait for spots xxx
13.8.08 - well no spots so i reckon thats it nae chicken pox lol am so glad, so nothing much new to report still having seizures but still in middles of changing meds so will just have to grin and bear till the transition is complete and see what happens then, and 1 week today james starts pre-school at oaklands which is our local special school, i cant believe time has gone by so quickly and my beautiful wee 4lb baby is now nearly 3 and a half and off to big boy nursery it makes me sad and happy at the same time its wierd, but its a great wee place and hes been going to the playgroup on a friday for a while now so he knows all the staff so am sure he'll settle in well xxxx
20.8.08 - hi everyone not much to say the now cause not much happening, fits been not too bad lately a few wee ones and one medium so thats not bad, starting pre-school at oaklands tomorrow, mummy is very nervous lol.
also she did her skydive on sunday past and we all went to watch it was fab and i am so proud of her so we just need to collect all the money in and then we can start looking through the catalogues to see what they gonna get me xxxx
1.9.08 - well second week of nursery is upon us and he still seems eager (up at 6 am lol) he also seems to have perked up a bit which is fab although he did have a feww fits yesturday morning and had a wee nap then was right as reign
got seizure clinic on tuesday so will see what that brings and finally an appointment at the eye pavillion seems for some reason we were missed as we should be going every 3 months but we now have an appointment xxxx
7.9.08 - well my little bubba has the cold or some sort of illness, slept loads since yesturday and is very tetchy so we are lying in mummy's bed cuddled up wee lamb, am just keeping an eye cause he seems floppy compared to normal hopefully just becasue he is unwell but well see what the week holds xxxx
nothing much new happening just the same old lol but we are finally picking up his new wheelchair pram on tueday and finally getting rid of that piece of nonsence he has just now so thats always music to my ears lol xxx
8.9.08 - well he is all better today ???? very strange, bloody seizures are creeping back in though we are back to everyday which we havent had since may when he went on steroids so am not happy to say the least
getting his new wheelchair pram tomorrow which i am looking forward to
i never really said much about our last seizure clinic appointment so it went well we are weaning him off topiramate which is good cause i really dont like it, still waiting on our results for lis1 gene (have been for nearly a year) possibly gonna try the ketogenic diet once he off the topiramate and see if that makes a difference with the seizures also looking into the vagal nerve stimulator which i am not keen on as it involves an operation and i feel he is too young for an operation so we shall save that as a last resort i think..
i think that was really it for now xxxx
12.9.08 - I HATE BLOODY SEIZURES
12.9.08 - sorry just had to get that out my system, everyday again and he woke through the night and when i went to lie with him to get him back to sleep he had 2, its a nightmare they not massive ones but they look so intense and he is wrecked after them
not much else happening the now waiting to hear about getting sent for tests for reflux hopefully not to long xxxx
14.9.08 - well i have to say we have had a lovely weekend still having seizures but in between times he is happy and smiley and its so nice to see i wonder if the reduction in topiramate is letting my lovely baby shine through again (fingers crossed) but whatever it is i am happy xxxxxxxx
16.9.08 - why does everything have to be so difficult, i feel like i banging my head against a brick wall some days i really do, wee man appears to have what we believe is reflux could explain so much right enough so have to start harassing people for appointments to get to the bottom of it all.
social work are a joke have taken them 3 weeks to get back to me and after all that surprise surprise there is nothing they cando to help with housing so tuff basically, so am gonna phone a couple of carers organisations tomorrow to see what they have to say cause i fed up and the stairs are becoming a challenge and lifting and laying in the house isnt easy either so ill get there i really will just gonna have to do some serious fighting ill keep u posted on my crusade lol xxxxx
18.9.08 - well phoned some orgasnisations and still nae joy xx so i have no idea what to do now but cry xxx
wee man still troubled and is a very sad clingy wee boy xxxxxxxxxxxxxxxxxxxxxxxxxx
22.9.08 - well weekend was ok a bit perkier which is always good lol sunday night a disaster lol was awake on and off and screaming the place down
but hey ho
still loving nursery which is fabby
still waiting to hear from hospital about reflux so ill call tomorrow and see whats happening
hope your all well xxxxxxxxxxxxxxxxxxxxxxxxxx
28.9.08 - well things been not to bad gaviscon seems to be working along with the omeprazole maybe to soon to really tell but he seems calmer so fingers crossed
still having daily seizures but hey ho
eating been a bit off the last couple of days again so not great but plodding along as always xxxxxxxxxxxxxxxxx
hope everyone all well xxxxxxxxxxxxxxxxx
11.10.08 - been a while since i updated so here goes, have stopped gaviscon and replaced with domperidone, waiting on appointment with gi team and dietician for a chat about whats happening and an endoscopy, feel he needs more fluids and easier med times so looking at ng tube to start hopefully followed quickly by tummy tube, seizures a nightmare once again still daily and loads yesturday had to give new rescue med paraldehyde after 16 one after the other so most of day was spent sleeping it off poor lamb, other than that he is well getting the flu jab next week as am i lol so thats us for now xxx
17.10.08 seizures seem a bit more settled of late still daily but only 3/4 a day and no paraldehyde since the first time, still waiting to hear about appointments
in general james is very stressed just now crying a lot and i think its the meds med times are a major struggle just now and i mean major it is heart wrenching having him screaming so much each time he has to get them and the poor mite sees it coming and cries before u even start its a shame
eating and drinking still a bit ok a lot of a nightmare especially drinking mega fighting there to and we used to use a syringe as back up when he wont use cup but as u can imagine thats a no go due to all the syringe medicines so another major fight there too
hope everyone else well xxxxx
25.10.08 - ok so a wee update, gi team been on the phone going in on monday at 1030 for a birium then to the ward for being observed and then we shall see what happens next, speech therapist and nurse from school wrote a fabby letter supporting us and our wish to not get an ng tube for james and move straight to gastrostomy, so fingers crossed they listen to me and see where i am coming from!!!!!!!
maybe a lot to ask for but we shall see james is very tactile defensive in his hands face mouth and orally so i feel an ng will cause him more distress than he currently experiencing which is sometimes hard to believe he could be any more stressed but that will tip him and us over the edge i believe, but ill keep you posted xxx
otherwise he is doing ok, seizures been increased the last couple of days but he has been happy enough inbetween times so i guess you cant have everything can you, but we have been helping his nana move house this week so i guess he may have been feeling some of the stress from that the day we actually moved he was very distressed for an hour or so, and he has had many late nights this week so i think the tiredness isnt helping but hopefully things will settle this week now that they are in the new house (fingers crossed lol)
nothing much else to report im afraid, not that all of the above isnt enough to be getting on with lol hope everyone else is doing well xxxxxxxxxxxxxxxxxxx
31.10.08 - ok so a lot to update this time lol
sunday seen us in a and e following a series of tc seizures but we got home once he was ok which was great
monday morning we started with a barium and along to the ward where we staying in for observations of his eating and drinking which as u can imagine he was on top form eating brilliantly taking meds no problem but fluid was very poor, had a lot of small seizures over the days we were in and on wednesday teatime he had another baddy and ended up getting paraldehyde which knocked him out for 16 and a half hours straight which as u can imagine worried me a lot especially as he was 21 hours without eating or drinking, so i was worried sick as u can imagine, so we got epilepsy nurse to come see him also and they have now started him on phenytoin which he seems to be tolerating well and the gi team have decided to go ahead with gastrostomy which they will be doing on thursday 6th november which is bloody quick and i am now full of nerves about it but for ma wee darling james it is by far the best decision so its a good thing really will post after op at some point to let you know he is well xxxxxxxxxxxxxxxxxxxxxxxxxx
hope everyone else is well
love marisa stephen and james x
xxxxxxxxxxxxxxxxxxxxxxxxxx
9.11.08 - hello everyone, so thursday 6th james went into hosp to have his tummy tube operation and all went well, mummy was very upset when he got the anasthetic but who wouldnt be, but an hour later we got the call to go back up and get him and the wee soul was so upset bless him, he cried for a good couple of hours and lay in ma arms till he fell asleep, but he slept plenty which was a good thing, friday he was better but u could see he was still in a lot of pain, but he did really well and was so brave even managed smiling which was lovely to see, saturday he was so much brighter ate all his breakfast and was tolerating the extra feeds in the tube and the meds which was bliss, however, he had a lot of seizures about 40 over the day had to have his paraldehyde and slept for a good five hours which isnt as bad as the last time he had it and woke up at tea-time and ate his tea really well but had another cluster of seizures shortly after but we didnt give him his paraldehyde as i didnt want him zonked again but he stopped and had a good nights sleep which he so badly needed and today he came home yippee xxxxxxxxxxxxxxxxxxxxxxxxxx
xxxxxxx
11.11.08 - now on myspace http://www.myspace.com/lis
26.11.08 - Sorry i havent updated for a while but been busy and nothing out of the ordinary to report really, james tummy is healing very nicely and the feeds are going well, meds are a dream its actually scary how much simpler the tube has made things, i no longer panic when he wont eat or drink as i know i can still get him sorted without stressing him out.
he has had a cold and an ear infection but after antibiotics is well on the mend so thats always a bonus xxxxx
seizure wise nothing much has changed after starting phenytoin i was very hopeful and despite some really rough days resulting in paraldehyde they seemed to slow down and only saw a couple a day but out of nowhere they are back with some major attitude i am hoping its just the levels have dropped due to him being unwell but deep down i know its just another medicine that aint gonna work, i hate feeling so negative about things but sometimes i cant help myself when it comes to the seizures i feel so helpless and i just wanna make them stop and its devastating to think that may never happen and everytime we try a new medicine i am filled with hope and then like a pin in a balloon it pops and reality kicks back in xxxxx
3.12.08 - ok so tomorrow james going into hosp to get yet another loading dose of phenytoin levels are still too low and he had double figure seizures for the last 3 days xx
so this was decided yesturday at the seizure clinic as he kicked off big style then they took blood and we got results this morning so not sure how long he gonna be in hopefully not long but they really wanna get the levels theraputic so im assuming hell be in till thats achieved so fun and games as usual xxx
all this and im still not done xmas shopping lol not even close what a nightmare xxxx
wanna send big hugs and kisses to declan, zane, aiden, gabriel, melaina and little adelaine i know some of u are poorly so am hoping u all start feeling better soon especially gorgeous dec who is really getting it rough just now xxx love u little man sooo much xxxxxxxxxxxxxxxxxxxxxxxxxx
10.12.08 - still in hosp levels up a bit but still not enough had an eeg yesturday so waiting to see what thats saying otherwise he ok still fitting same as always but he been a bit chirpier so thats always a bonus, talking seriously about doing keto diet as meds just arent doing it at all, started reducing his keppra as its doing nothing same as all the others xxxxxxx
hope everyone else is well xxxxxxxxxxxx
15.12.08 - ok so levels today are up to 13 woohoo finally theraputic now all we have to do is keep them there for the next 2 weeks to see if its gonna work, so seeing consultant tomorrow and see if we go home or what xxxxxx thank u all for ur lovely messages so much appreciated xxxxxx
19.12.08 -
I AM HOME LOL xxxxx gotta go back on monday to get blood tests done to check levels are still up then ward review beginning of january and usual seizure clinic but am home for santa coming yippee xxxxxxxxxxxxxxxxxxxxxxxxxx
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24.12.08 - ok blood tests up a bit again but increased normal dose and gave another loading dose back on monday for more bloods xxx hope u all have a very merry xmas xxxxxxxx
29.12.08 - and the levels are back down AGAIN so ANOTHER loading dose and back monday for more bloods xxx hope u all have a lovely new year xx and we'll see u in 2009 xx stay safe xxxxxxxxxxxxxxxxxxxxxxxxxx
7.1.09 - got bloods done on monday and levels back up to 9 still under where they need to be so back on friday for more bloods to see if the loading dose helped xx was back to school on monday and tuesday and now off again as i am not well think its just viral but high temp and bad cough xx apparently there are chicken pocks going round school so lets hope thats not whats wrong with me xxxxxx
9.1.09 - james had a very bad day today had a lie in and was very sick after breakfast and his meds so had to do meds again xx then had 4 jerky fits and had to give him his rescue med so i think he was awake for about an hour then asleep till 7 pm this evening poor bubby xxx sending lots of love to his pals zane gabriel and aiden who are all poorly just now too lots of love boys and i hope u all get well soon xxxxxxxxxxxxxxxxxxxxxxxxxx
14.1.09 - hi all james levels were thersaputic monday but going for blood tests again on friday to see if they still are
saying that he is having a very rough time just now has had his rescue med twice since 10 oclock last night and we are waiting on one more to make it 3 hoping it doesnt happen xxxx
please keep james little friend melaina in ur thoughts she is in hospital and is critical at the moment some much needed prayers for this beautiful little girl
http://www.caringbridge.or
16.1.09 - got blood tests done this morning so just waiting to see what the results are xx
not much else happening seizures have settled from the other day thankfully just hoping that doesnt happen again as i really didnt like having to watch him constantly fit like that it was very upsetting xxxx
please remember to say a prayer for melaina who is more stable but still not out of the woods yet xx love ya wee girl xxx
http://www.caringbridge.or
19.1.09 - finally got results back on saturday night i am starting to get so cross with them i really am i try my best to stay calm but i will end up losing the plot with them lol
so levels are down to 8, not that they are doing anything about it mind waiting on epilepsy nurse calling hahahahahahahahahahahahaha
want to say a very special shout to our beautiful girl melaina xxx get well soon sweetie sending you loves and kisses www.caringbridge.org/visit
Also want to send love to deccy doos mummy caroline for being such a fabby friend and helping us get through all the stress we appreciate u so much especially when u going through such a hard time urself please just know we love you and think of u and angel dec every single day xxxxxxxxxxxxxxxxxxxxx
23.1.09 - things ok here at the moment still fitting daily lol some things never change xx been up a lot through the night crying and whimpering which hasnt been nice and means he has ended up in our bed which definitely isnt nice lol having someones knees embedded in ur back for several isnt great lol
but on a brighter note we are waiting final confirmation to say we have a council house which is fab its on the ground floor and means i can continue to go to the same gp which is the best part xx
want u all to continue praying for our little friend melaina who is up and down but thankfully stable having a picc line put in today xxxxx
www.caringbridge.org/visit
1.2.09 - ok fun and games this end james fits have been through the roof all week especially thursday and friday when the jerky ones creeped in xx
i think he now has an ear infection as yesturday and today he has been pulling at his ear a lot xx
on a very good note we are officially getting our council house yippee not sure how long work is gonna take but we picking up the keys on wednesday oh and caz we are buying a beautiful new sofa with built in bed just for u xxxxxxxxxxxxxxxxxxxxxxxxxx
12.2.09 - ok so so far so good on the moving front but james has been at school all week so the big test is getting things done next week when he on his hols hehehehehehehehe
otherwise james remains the same fits up and down mainly up i have to say he has also been very quiet recently but perhaps all the commotion of moving is whats making him quiet
had a meeting with his consultant yesturday to discuss meds and the keto diet, meds arent working so we are going to try the keto diet having a few probs with that just now may have to go to glasgow instead which is ludicrous but we shall see xxx
26.2.09 - hello sorry we havent updated for a while been so busy moving lol but we in now still sooooooo much to do but we will get there eventually lol
james been up and down and was back in hosp for a couple of days again just got out today just these damn fits and his stupid rescue med not doing its job but par for the course i guess xxx
hope everyone else keeping well xxx
sending special big hugs to melaina who has been taking backward steps poor soul xxxxxxxxxxxxxxxxxx
27.2.09 - spent 3 hours today sitting at the eye pavillion how naffed off am i xxxxxx
and then they tell us they want jimmy jams to wear glasses HAHAHAHAHAHAHAHAHAHAHAHAHA
sorry i think that is funny and i have no idea how we gonna get jimmy jams to wear the things but hey ho xxxxxxxxx
1.3.09 - james got his glasses today have posted a pic so u can see xxx apart from still bein g quiet he is doing ok xxxxxx
16.3.09 - havent updated for a while again lol not sure where to start, move went well still loads to do but its looking much better and james room is all done so thats the most important room taken care of xxxxx
jame son the other hand is having a crappy time, been really quiet since his last stay in hosp and been up and down with temps and fits and been having really bad dioreah since last thursday doesnt seem to want to stop went back to docs today and took a sample so we'll see what it brings xx
hope everyone doing well xxxx i know we dont write in ur guestbooks much but we do read all ur updates xxx and think of u all often xxxxxxxxxxxxxx
19.3.09 - well the runs have returned ??? i dont get it i really dont should hopefully get test results tomorrow and see where we go from there xx
also want u all to pray for our little friend melainas parents our beautiful melaina passed away today xx
i have to say i am really struggling just now all these beautiful precious little kids are too young to leave and yet they still go and i get so scared when i look at my beautiful little boy cause u just dont know whats round the corner and it terrifies the life out of me it really does x i have shed so many tears for these little kids i just dont know if i have the strength anymore i really dont i cant bare it i really cant xxxxxxxxxxxxxxxxxxxxxxxx
13.4.09 - been a while since i updated again which i apologise for but i guess in a lot of ways there isnt much to say, still fitting every day, still a grumpy wee so and so lol
he is doing well though sitting is doing great has his bad wobbly days and falls over a lot but getting his helmet soon thankfully,
night time isnt great again i reckon he has been in ma bed every night either before he falls asleep or later on for the last week maybe 2 which isnt great for ma poor wee back but what do you do
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