Some recent pics

Just thought i'd share some recent piccies of Lewis :) the last 1 is of 4 special CDH 'babies' together at a meet i organised in February, it was a great day, so good to see all these amazing warriors together and hear their stories and i found it amazing just how very different each story was, but same amazing ending :)

FINALLY back online with proper net :)

So a month and a half after moving our internet has finally been transferred, Never again will i try and transfer with Sky, it has been a total nightmare!

Lewis is just coming on so much since physio were involved with him, his left side is loosening up nicely, enough for him to finally get onto his own knees, physio said his left side was so tight it was stopping the full range of movement he needed to be able to bring his his legs round to do things like get onto his knees and get onto his feet, so it's nice to start seeing the results of the physio and stretches we've had to do with him at home. He has actually got onto his own feet a couple of days ago, but was a real effort getting his leg round to do so, but he done it once so YAY for physio.

He was fitted for his special boots, and we go pick them up at the end of the month, these will help give his feet the stability they need to be able to walk, will also help keep his feet straight and not turned in.

All i can say is YAY for physio and YAY for Lewis kicking CDH nad CDH related problems butts.

He's such a wee character, he is just so funny and such a good wee boy, we're so lucky, he's deffo been worth our very long wait to have a wee 1 here with us.

we now have a physiotherapist

And about time too! I think it's quite ridiculous that he's been home from NICU for a year now and that's him just been referred to have physio come out! Anyway it went ok, she was really nice and really knew her job, she pointed out what we already knew, he is really weak around the diaphragm and tummy area due to hos surgeries, and also she asked if he had a lot of lines in his feet when in NICU (which he did) she said she could tell that he had as his feet are weak etc cos of how his feet are and the way they sit etc he's going to get fitted for special boots on 1st march n then we should pick them up a couple weeks later.
We've got some exercises to do with him which will help hime stretch his tight left leg and also his hips are a little splayed so the exercises should help bring those in a bit, we've to not encourage him on his feet till he gets his special shoes as we don't want to make his feet worse, good job he's happy shufflin round on his bum and doesn't complain. She's also goin to the get the speech and language (who went awol in october) to come back out.

Published with Blogger-droid v1.6.5

Inspired by my Sunshine Warrior :)

Ok so today i done something TOTALLY out of character.....i registered for the women's 10k in May eeeeeekkkkkkkk what was i thinkin lol, but hey i can do this, i'm raising money in honour of the sunshine in my life, my beautiful brave wee boy, so i'm doing this for him.
Wish me luck :) here's the link http://www.mycharitypage.com/Haylz81/ if any1 wants to donate, all money goes to CHERUBS UK


Lewis is doing FAB, he's almost pulling himself up now, the physiotherapist is FINALLY coming out on monday, just to do with his foot and his hips are slightly splayed, can't believe they've not came out till now, he's 14 months old, should have been seeing these people since he came home from NICU, his weight gain is also still climbing nicely and brave wee soldier has 2 back teeth popped through and has never even so much as grumbled, think he takes after his mummy with his high pain threshold lol.

We're moving house YAY (on friday lol) much nicer house (it's brand spanking new yay) and a much much much nicer street, can't wait :)

New Year, new improved weight gain?

Happy New Year!! i know it's a week in and so i'm a week late but been so busy xx
took Lewis for his 12 and 13 month injections this morning, but turns out he got another 1 too so that's him all jagged till he's 3 and a bit, he handled it like a man, unlike mummy! his daddy normally takes him but because of work i had to take him.
He also got weighed while he was there, since he was discharged from NICU he has followed the exact same line on his chart, that was after dropping low on it because of the feeding problems etc, well the past couple months he's been climbing up slowly, and today he's climbed again, he has gained an enormous (for him) 1lb 1oz in just 2 weeks, with the reflux and everything before he was lucky to gain that in a month! and he is now on the 50th percentile, i haven't seen that percentile since he was born, before it all started going downhill! so proud of him, as any CDH'ers will know this is HUGE for him, he is a little fatty as his height is a bit short (just like mummy and daddy) lol

Nothing much else to update on really, just had to share his brilliant miraculous weight gain lol oh also meant to mention that our chromosome reults came back saying we both have 'normal' chromos *sigh* obviously didn't want it be something, but didn't want it to be nothing either, no reason for having 4 pregnancies in a row ALL with problems, with 3 tiny lives lost and 1 little miracle who made it through his problems but robbed of his health, where's the fairness?

****i'm organising a CDH meet up in scotland (stirling) on the 12th february if any1 can make it, email me ****

Diaphragm Clinic Update

When Lewis was discharged from NICU in January, we were told he'd go to the diaphragm clinic every month to start with, then it would go to 3 monthly, then 6 monthy then hopefully yearly, so he was discharged in January, we went to the diaphragm clinic in February.....and haven't been since....till now, so to say it's long overdue is an understatement, always been worried incase his lungs weren't quite growing as they should etc.......
so Friday he had Diaphragm clinic, got there to be told he didn't have an appointment....OMG yes he does and we're not going till he's had it!!!! we got seen lol, first visit was to the weighing and measuring area, pleased to say that since following the same percentile all year, he has now climbed up to the next one and his height is on par with his weight, so he's perfectly proportioned, he's underweight for his age but at least he's on the charts as a LOT of these babies aren't even on it, plus he's a wee shortarse like his parents :)

Next was Physiotherapist and Speech and Language Therapist (SALT), SALT is very happy with him apart from not eating but that's such a common thing for these babies so it's nothing out the ordinary for a diaphragm baby and they know that, she's going to get in touch with the SALT from where we live, as she seems to have went AWOL on us???
Physio also noticed what we have, he's flat on his right foot which is fine, but his left foot he ALWAYS goes on tiptoes, so she's referred us to physio where we live (which we should have been referred to when he was 1st discharged from NICU cos of the delay in things for him given that he was hooked up to life support so long! also another few wee exercises she gave us to do with him as he won't go on or near his tummy at all we need to learn him how to sit up from lying a different way etc, she's pleased with him every other way though and SALT is happy with his 'speech' and vocal sounds.

Next visit was to Xray, he was sooo good, didn't kick up a fuss when the sand bag was put on his legs to hold them down or when i had to hold his arms and head, he just lay there, it was over in seconds, not once did he complain about being dressed and undressed for every area, such a good wee boy. I will write about the Xray results in a second.

Next was in to see his consultant, he's happy with the shape of his chest and though it's a bit messed up it's only as much as he'd expect, the big dent he has is due to there being muscle missing as that's what they used to repair his diaphragm, we've to stop his final reflux medicine, well to wean it down first lol, i told him about Lewis still refluxing past his fundo 2 months after he had the operation, he says that's fine as it's only very small amounts, he said it's like a safety feature, he has to be able to get past it if he's ill and needing to be sick etc so of course he can still reflux through it but it is only a tiny amount and certainly not on the scale it was, that was BAD, then he brought the xray up on the screen so i went for a peek,

well it looks absolutely fantastic, both his lungs were squashed during the pregnancy and underdeveloped, no1 thought he even had a left lung, until he had his repair when they found the left lung was just a bud, so barely anything of it at all......so in a year, this wee bud has grown sooo much, the right lung is bigger than left still but it's not far off it....they'll continue to grow for another couple of years and if it continues to grow at the rate it has been then it will be close to normal, he said it won't ever be normal but it'll be soo close it won't matter :) the best news ever, they're so pleased with him, he's to go back in 6 months and he'll have his Gtube taking out and replaced with the more discreet Mic-key button (and a friend has found some fab wee covers for these) HERE xx Also he said the diaphragm repair is holding up well so no obvious signs of imminent reherniation, though he says that's not to say it won't happen :s

So that's the update, 1st time we've seen his lungs in sooooo long and they're doing fab, he's doin fab he truly truly truly is our MIRACLE sunshine warrior :)

MERRY XMAS xxxx

December Update

So i'm not getting to update the blog as often as i should, but there's not so much happening in order to update so often, which is a good thing, no news is definitely good news as far as CDH goes.
well Lewis is now finally on the move, he's bum shuffling and can get wherever he wants to go, over to his toys to tip every single 1 out on the floorm, the chaos lol but it's great it's just the best thing ever to see him doing this, so funny seeing him 'bumming' along the floor xx
At least he has found a way of getting around, lack of upper body strength due to the surgeries means he struggles holding his weight on his arms, and also it's uncomfy for him lying on his tummy with a big old feeding tube poking out of it, plus i guess with his tummy being all misshaped can't be too comfy either. round the time he 'should' have been learning to get around he was in having another major operation so that set him back. better late than never though.

Finally the runs have stopped, like the day before we got his feed changed to try and stop it lol, he is now on Frebini which has a higher calorie content than the infatrini, so it means the volume has been cut a lot, which is great just what i wanted since he started throwing up past his nissen fundo, so back to the cycle of being fed, gagging, choking, bringing up feed, aspirating into his lungs, so coughing mucous up from his lungs trying to clear them ugh, hope so much he will be able to cope with the lesser volume of the new feed, therefore no throwing up past the nissen fundo, therefore no aspiration, wouldn't be called a rollercoaster if things ran smoothly though.
Talking of the new feed we had our 1st delivery of it this morning, not 1 spare bottle, they clearly don't take into account for spills etc or the fact that these bottle never have exactly 200 mils in them, so means what we end up short with come the end of the month i'll have to make up with his old feed which luckily i have some left, but that won't last forever either, we had this discussion when we 1st started getting his old feed delivered and after getting onto the dietician about it changed it so we'd have some spare, so here we go again!! stupid extra stresses we don't need and shouldn't have to worry about.

He has an appointment at Yorkhill on the 17th, for....wait for it..... the CDH clinic woohoo effin finally, the aftercare is bad, he hasn't been to the CDH clinic since february, 1 month after getting home from NICU, terrible. We're fortunate he keeps good general health though, he definitely has my immune system, both Ben and Ricky have been sick in the last couple months and neither me or Lewis has had anything lol, Lewis has had his Flu jabs this year but isn't to get the RSV 1 which i'm gutted about as we all know what RSV can do to these babies with delicate lungs, hell i know what it can do to a healthy baby after meeting a mum when we Lewis was in.
So as he's not getting the RSV then i'm not taking him anywhere we don't HAVE to go, missed the health visitor clinic this week, just not risking it, i should really invest in a set of home baby scales so we can keep an eye on his weight for the dietician.

So that's about it for now, we're making this xmas like Lewis's 1st xmas seeing as he was in NICU last xmas, so it'll be Lewis's 2nd 1st xmas this year lol and he's going to be very very spoiled :)

FEW BIRTHDAY PICS :)

Happy 1st Birthday Sunshine....Dear Lewis

we celebrated Lewis's 1st birthday, it was emotional and stressful lol just can't believe our baby is 1, well i say baby he's not so much that anymore either, Mr Independent is our Lewis xx

To my beautiful, amazing Sunshine Warrior, Lewis
my gawd i just love you so so so so much, i look back on everything you've been through this past year and my heart just bursts with pride everytime i look at you, you are my reason for getting up in the morning, your constant beautiful big smiles just make my life worthwhile. You are our massive ray of sunshine, shining through our darkest days, our little miracle. I believe with everything that's happened to us, you weren't supposed to make it either, but despite ALL your odds YOU DID, YOU KICKED CDH BUTT. that in itself is truly amazing.
Watching you this morning sitting playing with your new toys chattering away as if you're having a full blown conversation with them, dancing and singing to the musical ones, you ARE here and you ARE OURS and you ARE HERE TO STAY, i don't think i've ever believed that you've been here to stay, no1 knows what the future holds we know the risks of everything, that's what makes you special, and everything you've been through is what makes you who you are. you're such a stickler for your routine, the routine you've been in since NICU still stands today, through your own choice, you just won't have it any other way.
You won't be held and comforted when you get upset, because you got used to dealing with it by yourself because we couldn't lift you and hold you. You like and need your own space and bed when you're tired, because you got used to putting yourself off to sleep because again we couldn't lift you and rock you. You're so independent i don't feel like i do anything for you, it breaks my heart, But you're very happy, always have been, always smiling through everything.
I have no idea how we got through our pregnancy with you knowing how very poorly you were and knowing the battle that lay ahead for know, nothing could predict your survival, no1 knew how you would do till each day came, we didn't think you'd see your 1st xmas last year never mind your very 1st birthday this year. BUT YOU DID IT, you fought the battle and won :)
mummy and daddy love you soooooooooooooooooooooooooooooooooo much wee man

This was our song through the time i carried you

I can almost see it
That dream I am dreaming
But there's a voice inside my head saying
"You'll never reach it"

Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking

But I gotta keep trying
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking

I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going

And I, I got to be strong
Just keep pushing on

'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Somebody's gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith


And this was your song when you were born

You got wires, going in
You got wires, coming out of your skin
You got tears, making tracks
I got tears, that are scared of the facts

Running, down corridors through, automatic doors
Got to get to you, got to see this through
I see hope is here, in a plastic box
I've seen christmas lights, reflect in your eyes

You got wires, going in
You got wires, coming out of your skin
There's dry blood, on your wrist
Your dry blood on my fingertip

Running, down corridoors through, automatic doors
Got to get to you, got to see this through
First night of your life, curled up on your own
Looking at you now, you would never know

I see it in your eyes, I see it in your eyes
You'll be alright
I see it in your eyes, I see it in your eyes
You'll be alright

Alright

Running, down corridors through, automatic doors
Got to get to you, got to see this through
I see hope is here, in a plastic box
I've seen christmas lights, reflect in your eyes
down corridors, through automatic doors
Got to get to you, got to see this through
First night of your life, curled up on your own
Looking at you now, you would never know. ((((((so true))))))

he's EATING (well of a sort but still)

we're going through another 'eating' phase, it started with choclate buttons, he was taking little bites of them and actually chewing and swallowing, NO gagging or choking on it in his mouth, he won't be fed and he's not putting everything into his mouth just select things, gave him a chocolate digestive the other day (just 1 of many things we just give him to 'play' with) but he decided he was going to bite pieces of it then spit them out, so even though technically he wasn't eating it we just say he was 'eating' it, this is huge.
still not eating likes of dinner when it's put to him, i usually just give him some of what we have to sit with but he NEVER puts it near his mouth and still isn't, but again today i gave him a plain biscuit and yep again he was biting pieces off it and then spitting them out, it's a start. let's just hope he keeps it up this time and nothing sets him back :)

It's his 1st birthday a week tomorrow OMG i can't believe it, our little sunshine will be a whole year old, this time last year i was sitting counting down the days to going in for induction, dreading it with every bone in my body, wishing i could just keep him safe inside me forever, terrified of losing him, not knowing what each day would bring and even knowing that he could be doing well 1 minute but doing really bad the next, terrified to start the rollercoaster ride, but look at him now, he's a wee superhero, an amazing fighter :) we couldn't be any more proud if we tried, yes he's behind with weight due to him having severe reflux for 8 months, behind with some other wee things but he's soooo bright and clever, he's defo been here before, he now has 6 teeth with i'd say another 4 on the way but he just takes it all in his stride, after everything he's been through a wee thing like teething isn't bothering him.

His vocabulary is amazing too he has soooo many words and can put a few together, just love him so much.

a wee update on the last post where i mentioned about the ectopic thing, well in the end it turned into a full blown rupture at home, i recognised the signs n got Ricky to ring in and tell them i was coming in, they said if i was still in pain in half an hour to go in, but i knew the score, told Ricky no tell them i'm coming NOW, so off we went, this is pain like no other, i'd go childbirth/c-sections any day to this. rushed to theatre where i'd lost a litre of blood into my abdomen and another litre during the operation, also sad to say i lost my left tube. then was told afterwards i would have been dead within half an hour if i hadn't gone in, so am very lucky to have recognised the signs and not listened to them saying come in half an hour.
we have an appointment with our consultant on the 11th so i'm hoping once i present him with ALL the facts he'll agree to push for genetic testing, not just cos of the ectopic, but because we've had 4 pregnancies in a row all have something wrong, 3 losses out of this. Also other reasons like family history with the heart problems, not my place to say too much but i've had 2 nieces born into heaven this year, both with severe problems, so there's a link, we just need answers.

Spongebob's Biggest Fan

Lewis LOVE LOVE LOVE LOVES spongebob squarepants :)

pics to go with below post

Here's the update, good and bad

so a lot has happened in the last month, mainly for me but about that later....
well on the last update i mentioned the mucousy choking and said no reflux with it so not too concerned, well i should have known the mucousy stuff was to do with his reflux, cos yup he's been refluxing, not after every feed but at 1 sometimes 2 out of his 3 daily boluses, we thought it was to do with that he was getting too much milk at his feeds, so i had to consult with the dietician about changing his feeding regime, not much we can do with it because there's a certain amount of calories we HAVE to give him and he's not good at all with large volumes, so he's now on the pump for 10 hours at night, subject to change as he's still having refluxes, guess it's the wrap coming a bit loose who knows, only a month to wait for his checkups at hospital, but will be mentioning it to his doctor when we take him in, he's got what we think is a touch of eczema and still has the runs, now tho they're back to how the were just after his fundo and smell so vile.

He's also teething like mad at the minute but so far only 1 more tooth has popped the surface so that's him now got 5 teeth, 1 of his top teeth is looking like it's gettin ground down the corner with him grinding his teeth but i have no idea how to stop that.

He's still not eating a thing either, i came across a forum for tube fed babies and they all seem to swear by this 'Graz method' it's a feeding clinic in Austria, but VERY expensive :( but with a high success of weaning these tube fed babies off their tubes in a few weeks, i am liking the sound of it but will have to do my research 1st, the cheapest option is to do the method via email, apparently it's just as successful, so if any this will be the option we choose, but will have to see about raising the funds, but obviously i will research it A LOT 1st.

So that's about it to be honest nothing much has been happening with Lewis, he's coming on so much and doing everything he should be except eating lol and growing a LOT, it's now 1 month till his birthday, i just can't believe it at all, this time last year sitting absolutely terrified that time was getting closer and not knowing what lay ahead and no just look at him, he's amazing he really really is, my wee rock this past couple weeks, which leads me to the bad news,

i'm not going into too much detail as it's Lewis's blog etc but it's what they call 'pregnancy of unknown location' static bloods say it's there but it's not surviving and it's not letting go either, and they can't locate it on scans, it's not been causing problems but needs to be removed :( had an injection of methextrate on monday which breaks down cells, so just waiting on things to happen now and hopefully it'll all be over soon and i won't need a 2nd injection, so i had been told last week baby would already have passed, but then told on monday that as the bloods are static it's still there, so i guess when the levels start falling we'll know it's really gone, so that's 3 wee angels for us now :(

Will Update Later

Have decided to reopen the blog to the public, i was looking through the feed thing and discovered people used to come across my blog by googling for various CDH things and google would direct them to certain posts of mine relating to what they were looking for, so i'm glad my blog 'helps' people.

i know we're well overdue an update but lots of things been going on here lately so i promise i'll update later today and add some recent pics of our gorgeous Sunshine Warrior.

Hayley xx

highs and lows

well last wednesday (1st) Lewis was back at yorkhill for his post op check supposedly with his consultant, who we seen for like 2 minutes!!! no1 is concerned that Lewis STILL has the runs, which he's had since his operation, his consultant took 1 look at him said oh he looks great, we'll schedule him to come back to the diaphragm clinic in November!!!
So i'm not happy but what can i do, he's been the diaphragm clininc only once already which was in february, the month after he was discharged from NICU and we haven't seen his lungs or had his chest listened to or his diaphragm checked out since, not impressed.
Oh and he passed his hearing screening today, i knew he would though :)

He's still not eating either, in fact i think the situation is getting worse, he only has to touch some foods and he's gagging and retching at them nevermind if it actually touches his lips, this is so frustrating, he's just not interested in food, he WILL put anything in his mouth as long as it's not food. I'm just at a loss with this now, i have no idea what to do or try next and SALT is no use either, so what now?

Lewis has been gaining weight recently, yesterday was the latest weigh in, he has put on 5oz in one week, how fab, that's the most weight he's ever gained in a week, sometimes didn't even gain that in a month, but can feel the difference in him now he feels so heavy and solid, though he still isn't on par with his height and age but he's doing fab, apart from the past week or so his mucousy choking episodes are back though he's not refluxing so we're not concerned about the nissen, but again no1 seems concerned sooooo........

Can't believe Lewis will be 1 in two months time, that's so scary, where has the past year gone and look how far he's came :)

2 top teeth :)

just a quick update
well the other top tooth made an appearance the day after the 1st one and he has now discovered how to grind his teeth eeewwwww i hate it it's horrible and i have no idea how to make him stop it :s
he's still not eating either, can't believe he was doing so well just after he got out of hospital as well then went right back to not wanting anything near him, SALT women said on thursday that she doesn't have anymore suggestions, can these people really be sooo rubbish? i mean they've only ever gave us 1 suggestion, and just repeated it every month when they've came out and now say they don't have anymore suggestions, wtf? there HAS to be more? ah well back to google for me :s she doesn't agree with giving him lots of different flavours, but health visitor seems to be in a bit of a disagreemenbt with her, SALT wants us to only give lewis baby rice and porridge, he doesn't like either has never shown an interest in it, my opinion is he needs to experience lots of different flavours (and hope he discovers somethin he likes) and also lots of different textures, who knows, she did say we could be looking at him going to school and seeing other kids eat before he does, yeh she's very optimistic...NOT, so looks like i'm on my own again with this.

well the feeding pump is going great, what a difference, he's only tolerating 65 mils an hour over 8 hours and has breakfast, lunch and dinner times (to play with food seeing as he won't eat it) at the same times as us then we do his bolus feeds, we would like him to be on more throught the night so we can reduce the amounts he gets at his bolus feeds during the day and hopefully he can get hungry and experience that and learn that food stops the hunger, well we live in hope something will work and i figured the best place to start would be to have him getting hungry.

so that's about it for now, he has his post op checkup on wednesday and hoping we can persuade them to do his CDH checks while we're there as they haven't been done since february!!! just be nice to see how his lungs are doing.

Feeding Pump Bliss

well on Friday morning i took delivery of a nice shiny feeding pump and a box of giving sets :) then in the afternoon i had a visit from a man who trained me on using it, i will just say WHAT A HUGE DIFFERENCE this is making, had my 1st whole night sleep in forever and it's better for Lewis as well as before, with his tummy still tender he was waking up during the night as we fed him and he was crying etc but now as it goes in slowly over 8 hours he barely knows and so he's back to the way he was before his fundo, sleeping right through, we started off on friday night with 30 mils an hour then night night up to 40 then next 50 etc, last night he was on 60 mils an hour, therefore reducing the amount he needs through the day, so now he'd down to just 3 milk feeds through the day at proper meal times, breakfast, lunch and dinner, introducing him to the world of 'normal' feeding times, we'll slowly get up to so much through the night i'm not sure what the target is, so that he'll actually feel hungry through the day, which we hope may help in the learning to eat process, so he will eventually learn eating satisfies hunger, i'm so glad i pushed for this, it was all my idea just has taking some time to actually get it to happen and glad every1 is on side and agrees with my plan, let's just hope it works :)

Yesterday Lewis's top left tooth made a little appearance through the gum and i think in the next couple of days the 1 beside it will be through as well, if it isn't already this morning, i'll have a look when he gets up, i'm sure he has a couple coming on the bottom beside his front ones as well, but to be fair he's taking it all in his stride, it's not bothering him at all, a friend said this is because in comparison to everything he's been through already this is nothing, so true.

He wanted his bed earlier last night so bathed him a bit earlier and put him to bed and he's still sleeping now at 8.30am so had 13 hours so far, lazy bones :)

We were away meeting some fab SANDS ladies on saturday and the above picture is Lewis table licking lol so funny, weird how he'll lick and chew on everything except food!!

Back to Not Eating

so before Lewis was born i heard the phrase 'CDH is a rollercoaster' a lot, well isn't that just a huge understatement, just wish things could be easy for once, afer his wee spell of eating everything, we thought that would be it, surely now he knows he can enjoy it he won't look back, WRONG!! he got my cold, he only got it mild but it was enough to put him off his food....he stopped eating and hasn't eaten since, he's not interested whatseover, back to going mad everytime you dare put somethin near him.
He's a bit more back to his old self now, so he's getting there slowly but surely
before we left the hospital we were told the community nurses would be out 2 days later, but nope they never came and that was nearly 3 weeks ago now, he also never gained any weight in a month, but we put that down to he was still being sick then he was in for his operation and he probably had put on weight but with all that he'd lost it again,
at the minute he's still quite uncomfy when he gets a lot of milk put down his tube, so we're sort of been bordering going back on 3 hourly feeds, but managing to JUST get by without doing that for now.

we're off on saturday morning to go meet some lovely ladies i met through SANDS just after losing Nathan, and we pick our new shiny car up on thursday can't wait :)

good stuff and bad stuff

well the good news is Lewis got home on the 28th July the bad is he's still been showing discomfort etc, he's miserable all the time and still has the runs poor wee thing, so he's being bothered by the top (teeth) middle (tummy) and bottom, he just moans all the time and randomly screams here and there, all through the night as well, just want to take him back and tell them to undo everything they done so i can have my happy smiley little boy back, hate seeing him upset and miserable all the time xx
we also have other good news on the Lewis front, since a week ago today he has been eating, and seems he just wants everything in sight, even though he's not eating very much he really goes for it when he does, and he's now decided he does like the little yoghurts after all and can devour half of 1 of the little pots, all this off a spoon as well, so suddenly and out the blue, he used to just go nuts whenever a spoon went near him or whenever food went near him, so thinking it was just a 1 off all week but he's eaten somethin everyday for a week, he's only taking like a teaspoon all in then he's knackered but it is hard work for him having to use muscles he's never really used before, so hopefully with some more practice every day he'll get better and start eating more.

Even more proud of him he's been through so much, he's just my little hero :0)

Feelin better today

lewis is much better today compared to yesterday, he's had the continuous morphine stopped but is still connected to it incase he needs a wee boost, they're stoppin his epidural tomoro as well, and today they've started givin him stuff through his new tube into his tummy just startin off with dioralite and i think tomoro they're startin to give him milk then we'll try and get his feeds built back up to what they were, got a wee smile off him last night which is the 1st since before his op and daddy got him a spongebob balloon from the wee shop seein as he's spongebobs biggest fan i don't know how he's managin without his daily fix lol xx slightly more smiles off him today which is great to see, he's still in some pain and specially when he tries to cough etc, can't wait for him to be over this and back home such a brave wee man xx