Oh my has it really been so long??

Wow I can't believe I haven't been on here in so long!!
Well our sunshine warrior will be a whole 3 years old in 2 weeks! What's journey it's been too! I was looking back at some baby photos the other night from when he was born and his time in NICU, I haven't looked through them in so long, I cried, I can't believe that was our little boy so very poorly, fighting so hard for his life, to look at him now it's just unbelievable! It feels like it was all a million years ago!
He keeps in fairly good health considering, though has been plagues with a few chest infections this year, 1 particularly bad 1 where he ended up in hospital and had abnormal breathing because of it, but they refused to X-ray! I'm just so glad we don't end up in hospital very often!
He's a proper little boy, running round just like any normal 2 year old even though they said he wouldn't, he does tire a little quicker than normal though, but at least the whole thing doesn't stop him!
He is still fed through his gtube, but he will try almost anything food wise now, not enough to count as intake still but his interest is just so great!
He's still enjoying nursery, going 3 sessions a week but due to start 5 sessions in December, he also attends an outdoor nursery 1 session a week and he absolutely loves that, just running around outdoors getting dirty, just like kids used to when I was little as you don't really see much of that nowadays!
I have also just recently discovered the 'blended diet' which interests me very much and is something we would love for Lewis to experience, normal food in his tummy, there is no medical reason he can't eat and swallow food safely and we are hoping 1 day he'll get over the aversions etc and eat just like us, so why not start him on proper normal food sooner, he'll just be getting it through his gtube instead of his mouth! I did buy and have read The complete tube feeding book by Eric aadhaar, what a great book and a great starting point, I have learnt so much by reading this, can't really say anymore on it just now as technically we haven't been giving the ok to start the blended food, but I do reckon we'll have to push as hard as we can to get all round agreement, beats me why though, I mean it is  just food after all :)
Oh and Lewis (and his little sister Kaylah) will have a new little brother joining us in February, a big surprise but a very welcome 1 :)

New Year, not so new Lewis :s

I wanted to try and update the blogs at the beginning of each month at least, but i have been so busy and just don't seem to get the time! so anyway it's after midnight and here i am doing a quick update before bed!

Lewis has gone back to being Lewis, not much of an interest in food again at the moment, so yeh the CDH rollercoaster is still going on here, 10 steps forward, 50 back, but we just have to keep on working at it and hopeing next time he goes through his interest phase, it'll stick!
Lewis had a great xmas, spoilt rotten as usual, didn't even bother when he was told to say goodbye to the xmas tree a few days later as santa was coming for it while he slept cos he needed it back.
His speech is even more amazing now, i can understand most of what hes saying and he's onto stringing some 3 words together!
We took delivery of a backpack today for his feeds, so he can now be pumpfed at his 3 feeds through the day, we're working at finding a rate he'll tolerate though as he's only tolerating 43 mils per hour through the night at that's when he's sleeping and relaxed, started him a bit higher today but nope didn't like it so had to turn it down, hopefully an increase of 1 or 2 mils at a time will work, fingers crossed! he was good at keeping the backpack on although a few times kept coming to me and saying 'pump off' like he does when he wakes in the mornings, but some quick distractions soon fixed that :)
I sort of felt that going to pump feeds through the day was something we always tried to avoid as that way seemed like he would be on continuos feeds due to his lack of toleration of amounts so feels like we've gone backwards a few steps too but a the same time i was rather excited about it but only because he always protests getting his feeds throuhg the day, we have to practically hold him down on the sofa while he screams and kicks, and then feed goes everywhere and it's really just not a nice experience for him to associate with feeding, perhaps giving him more fear about anything that fills his belly up!
He is also getting a little more 'clingy' to me, like he won't let daddy put him to bed etc and if he's taking him downstairs he looks at me with sad eyes crying saying mummy lol so cute and maybe like once a day he'll give me a cuddle when i ask for 1 and a kiss and says love you, and maybe couple times a day he'll sit beside me and lay his head on me or put his arms wound me without being asked, waited over 2 years for any kind of affection willingly without prompting from him and it was really worth the wait :)
Just realised it's now 12th January, 2 years ago today we brought our beautiful sunshine warrior home after only being told the day before, 'how about home tomorrow' omg really :) and here he is, still faced with many CDH related challenges, but still battling on like the warrior he is :)

Updates

Having always thought i would give the blog until Lewis turned 2 and then turn it private, i have decided just to leave it open, no idea if any1 still reads it or not, but i do know from the visitor thing that people are coming across it by googling CDH related things which are obvious to the fact they are pregnant with a CDH baby and the thing is showing they're reading posts i've written regarding the things they're googling, so i 'hope' that the blog is helping some people out there and i'd to shut off 1 of just a few places people can get get what they are looking for, i only wish there were more answers to questions i was looking forward to while pregnant with Lewis.  However i am yet to decide whether to just leave this 1 as it is and not write in it again, perhaps starting a new private 1, like i have for Kaylah, or just keep writing in here to keep his life journey in 1 place, but at the same time trying to decide if he will actually appreciate his journey 'out there' i'm sure when he knows it's helped people he won't mind, but still, it's his life, not mine! decisions, maybe just for now i'll leave it, i know either way i need something for me and i've had this blog for so long now, started writing it when we got his diagnosis at 17+ weeks pregnant!
I think for now i'll leave it and have a good think and decide after christmas :) that wasn't entirely my plan to write about that in this update, i was going to just say about how busy life is now with a toddler and a new baby, just barely get the time to update these, so was planning to update both Lewis's and Kaylah's blogs once a month, even if it's just some pics!

Anyway enough waffling, none of that probably doesn't make any sense lol
Lewis had his 2year check with the health visitor today, absolutely no concerns with him, so much for being told he'd always be a bit behind developmentally, well he's not, he's brighter :), so much for not being able to run around with the other kids, he can :) and i bet he'll say so much for not playing for scotland too :) Health visitor said he passed with flying colours and she also said she's never had 1 do everything she asked so quickly :) he makes me 1 heck of a proud mummy every single day, he's also had a HUGE growth spurt in the past 2 months, he's so tall now and can reach our door handles n open the doors eek, he counts very well, mostly coming downstairs lol, he's also now walking up the stairs instead of crawling up them, another eeek lol, his eating? omg he is doing just fab, he joins in our meal time every time now, he'll ask for food now, he'll ask for juice as well, though we struggle with knowing what to give him because he doesnt get the chew thing and so he chokes on things as he tries to swallow! we have a wee net feeder thing and he quite likes that for now, so it's a bit safer for him to eat from!
we have our christmas tree up now and he just loves the trees, so much so we had to put a wee 1 in his room! he stole away with a wee light up 1 we got for his brothers grave but had to pinch that back to take to Nathan today and we can't find another 1 so he's just got a plain tree till we got some wee lights for him, he lay in his bed for over 2 hours the other night just saying oooohhhh tree lol, so cute.

Fundo Loosening Op = Fail

So we had a call from the hospital, again short notice to take Lewis in for his op to loosen his fundo! apparently the delay was because they were trying to get hold of a special pair of scissors they needed for the op, at the cost of £550 a pair which are single use, oops.
So we took him in for 2pm on sunday just past (20th November) booked him in and that was that, no idea why we had to go in then as he wasn't booked into theatre till 12.38pm the next day! so lots of hanging around, and poor Rucky was working the saturday night and he was staying in with Lewis so was knackered, Lewis wasn't for settling at night, but Ricky managed to get him to sleep about half 8, only for a nurse to come clattering around at his cot an hour later and wake him up! and that was him up till 3.30am!
He was to fast from 6am but Ricky said nurse came in and despite him telling her he was on his pump feed till 6am she took the pump away at 3am! so next morning, cue a very tired very hungry Lewis, i sent Ricky homw with Kaylah so he could get some sleep as he was staying in with him that night too, no need to say 12.38pm came and went without a peep, then at half 2 some1 came and told me was a delay in theatre....yeh i'd already figured that out! anyway they finally came for him at 3.30pm and i took him in and held him till he fell asleep with the gas, i hate doing that it's awful, so full of life kicking and screaming 1 minute and the next...nothing :(
He came back a couple hours later, Consultant came in for a chat.....the op failed, he couldn't remove the stitch! apparently it was just too close into a fold in his oesophagus and would have been unsafe to try and remove incase the oesophagus got damaged! to top it off, he changed Lewis's mini button while he was in as it was due changing (even though i was supposed to get to do it) and obviously cos he'd been fasting for so long, his stomach was empty and so they couldn't aspirate anything to be sure the button was placed correctly, so back to the ward Lewis came with the note, not to use his feeding tube!! great so how the hell do we feed him!! we don't, they put him on a fluids drip, i wasn't happy!! consultant had said we'll bring him back in january and try again for the stitch removal, this time though instead of going in the same way as this time, down his throat to get it from above, go in through his gastrostomy and try and get it from the bottom, if that failed then would have to open him up again, which he was really trying to avoid, having been opened in the same place twice already, last time for the fundo and actually extending his repair scar and nicking his spleen during the fundo due to everything being so stuck together etc was just a risk he didnt want to take if not absolutely necessary, which i totally agree with! off to xray the next morning for contrast study and to check tube placement etc

They used a syringe to put the contrast liquid into his mouth, forcing him into swallowing it, consultant was very pleased and surprised by the results, it showed the liquid went striaght through to his stomach very very quickly, not what we were expecting with a tight fundo, not what he was expecting either and it was him who done the endoscopy in august and discovered it to be too tight! soooo this means it's loosened itself off! wish we'd done the contrast before he went to theatre!! and thinking back to the few days before went into hospital, he has had a reduction of the coughing/choking/gagging and bringing up a LOT of sticky horrible mucous! meaning it's obviously been able to run right through into his stomach with the loosening! just before that reduction though he went through a week or so of being really bad when we were doing his feeds, screaming the place down and writhing around in pain! that has stopped as well and he's actually tolerating his feeds better than ever!! soooo i do think it was the too tight fundo causing the problems all along, we'll see how it goes though.
Got home on tuesday, and tuesday night in his own bed he must have been sooo knackered, he slept right through without even moving and till about 10.30 next morning!

He's doing just great, i just felt awful that he'd gone throught the whole fasting thing and then the theatre stuff, getting put to sleep etc for nothing, just wish we could have done the contrast study first but then i guess consultant hadn't expected it to change! none of us did, but oh well it's done now i guess and he's forgot all about it!
He's doing amazing the past couple weeks, he wants everything to try and eat, he's also taking a bottle with some juice in it, running round with it for couple hours and lucky if there's a mil or 2 out of it, till today, a whole 3oz of juice!! he's biting into things and taking the bites into his mouth, if they're too large for him (like bigger than a rice crispie) he spits it out, if it's the same size or smaller, he's SWALLOWING yay, he ate some rice crispies off Ricky the other day, started off just putting 1 in his mouth and he swallowed it, so then moved onto 2, then 3 etc, but got to about 5 and he started choking on them, cue a whack on the back poor wee thing but out flying came a few rice crispies! he does the same with crisps, gets a bowl and asks for crisps in it, hula hoops arehis favourite, he'll stick it on his finger and lick away at it for the next hour or so until it's quite soft and then he's taking a bit in his mouth, bigger than he can handle and chokes on it! i hate all this choking, i really just wish that now he has this fabulous massive interest in food he would let us start at the bottom with baby foods and 'wean' him and then give him solids, just like you do when learning a baby, cos basically as far as eating goes he is just at that stage! but nope he won't have that, will only take finger foods, continues to bite off more than he can chew and then chokes on it in the panic trying to eject it from his mouth, all well and good thinking just give him smaller pieces, oh no he won't have that, he'll have the things as they come out the packets else he'll throw a wobbler and not have them at all, so just have to supervise closely! he is doing sooo amazingly well though we're absolutely delighted with his progress :) and now he can ask for what he wants i think maybe makes it easier for him, he can say he wants crisps in his bowl, or some juice! he's just great, talking in short sentences too and coming out with new words all the time! he is a stubborn wee man who definitely knows his own mind :)

2 years :)

This time 2 years ago i was spending the last night at home with our baby safely tucked up in my belly, for we didn't know which path our journey would take us, 2 years ago tomorrow we checked into hospital ready to begin induction, 2 days later  after showing no signs of wanting to come out of there i had my waters broken and hooked up to the drip to bring on contractions, 2 hours after that begin and after him getting into distress and his heartrate dropping i was rushed to theatre for an emergency section, then they whisked him away, 5 and a half hours passed before they would let us into the adjoining sick kids to see him, while they hooked him up to his life support. convinced he wouldnt make it past xmas, xmas came and went and he fought on and after the longest 2 months ever we brought home our wee miracle ray of sunshine Lewis. The past 2 years has gone so fast but i am so lucky to have him, he is just the best wee boy ever, nothing gets in his way, he's a typical proper wee boy, into cars and trucks and all things boyish, loves a bit of rough and tumble, much to my horror, he's into toy story at the moment and anything to do with cars and animals especially cats and puppies! he has self taught some makaton signing and coming on a treat with his speech. Still 100% tube fed and loving nursery, he has made big improvements since starting nursery with the sensory issues he has with food, not gagging and retracting so quickly from it, but willing to touch and lick most things now.
We had his nursery review on monday and they are so pleased with his progress, said he's such a lovely wee boy, and couldnt believe just how clever he is, not sure where he gets his brains from but he seems to have a real lot of them :)
Finally got his appointment for hospital too, he was supposed to go in and get a wee op to loosen his fundo off as its too tight, consultant wanted him in within 6 weeks, but that 6 weeks ran out 6 weeks ago!! the appointment is just because his consultant wants to see him at the clinic and discuss the wee op etc just want to get it over for him now and we just worry that then it'll end up too loose and the reflux will start again :(
He's still not much fussed for Kaylah but we know he loves her really :)
We're taking him to the sealife centre for his birthday on saturday as he also likes fish and things, we have our own in a big tank at home and he loves them.
so proud of the toddler he has become, even if his terrible two's are quite terrible at times but i wouldn't have him any other way, he's here and he's happy and if he's happy then i'm happy :)

Wee update

Just wanted to announce the birth of our beautiful baby, Lewis is the proud big brother to Kaylah Ashleigh Rose, born on 29th September, she's 3 weeks old now (that has gone soooo quick) and is absolutely beautiful n so happy and content, Lewis is much fussed for her but she gets cuddles and kisses :)

As for Lewis, well he's doing good, terrible two's have hit :s he is such a rough, boisterous child lol, he loves cars in any shape or form and has quite the collection going on :) I can't believe he'll be TWO years old in just 3 weeks time, that has gone sooooo fast as well and like last year the approach to his birthday brings a whole range of emotions and thoughts, such as 'what if' and it's just soooo not worth even thinking about that but still it's there! But he is here and larger than life and doing fab :) and he's as stubborn and defiant now as he was then, but I love his stubborn, defiant streak as I believe that's partly the reason he made it :) our sunshine warrior :)

His speech is coming on a fair bit lately, he is a tad behind but they say it's because he doesn't eat and hasn't all this time so he hasn't been using the facial muscles while eating that babies later need for their speech, but he's getting there, still loving nursery :) and has a wee 'thing' about his wellies lol I guess it's an unwritten law when it comes to wellies, kids just HAVE to wear them all the time and they become the favourite choice of footwear lol
Speaking of eating, Lewis is going great in that department, still not taking anything enough to count as calories but he will taste moste things and is getting a bit brave and letting solid things such as a wee bit of crisp go right in his mouth without him holding it, though it does come straight back out!, his dietician wants us to introduce a '3 mealtimes a day' but we've tried that before, he gets his food 'playtimes' bug if we want him to actually taste things we find he does great if we don't give him a plate of his own (he won't touch that) but we let him come freely to our plates and we'll feed him teeny bits, he comes back and forth regularly until its finished, just have to give him teeny bits else his tongue will automatically eject whatever is in there lol xx so proud of him :)
Sent from my iPhone

Still tasting, advancing with lumps?

Just been sat for the last half an hour with Lewis and a packet of haribo Jelly sweets, I've been holding a sweet to him and he's stood there biting On it, he's never 'bitten' into anything food wise so this is fab n he's kept doing it cos they're just jelly n bits aren't breaking off into his mouth, so I thought I'd step it up a little n held a Kelly baby for him to bite into, bits break off these easier n he was fine with biting a bit off n then spitting it out so we kept practicing the biting a bit off into his mouth then him spitting it out straight away, at least there was a wee bit going loose in his mouth for a second....after a while he didn't spit the bit out straight away, he kept it at the front of his mouth and kept the control of it for a couple of seconds before spitting it, but then he kept picking it back up and putting it back in, keeping it at the front and keeping in control, no gagging or anything.....what a huge step, learning control :) so proud of him xx he's still interested in food n willing to lick and have a teeny weeny taste of mOst things, but the amounts he'll take are soooooo small there's barely anything there, that's why thd jelly baby head thing is such a big deal, it's the biggest bit of something he's ever had in his mouth and HE kept control :) keep it up my beautiful boy, mummy loves you soooo much xx

Lumps :)

Is proud and very happy to say that at 21 and a half months old, Lewis has had his very 1st lumpy food!! He was helping me eat a muller rice! I just stuck to giving him bits with no rice in and he kept coming back for more, just opening enough to get teeny weeny wee bits, then I gave him about half a grain of rice n he ate it :) so then I gave him a bigger bit of rice n he ate that fine too, so then gave him a grain with teeny bit of the 'saucy' stuff but I kind of shoved a teeny bit more in and he started gagging and choking :( but after he recovered he came back for more but refused to open wide enough to let more than a teeny weeny wee bit in again :s but still he had a couple grains of rice = lumps woohoo :)

Sent from my iPhone

He ASKED for food :)

So today while I was in the kitchen making dinner, Lewis came in, went to his highchair n pushed it to the middle of the floor, then he goes to the fridge and points at it, so I opened it and he points to the little yoghurts, so I took 1 out and sat it on the worktop, then he points to the cutlery, so I sat a spoon next to the yoghurt so then he goes over to his highchair and stands beside it with his arms up for me to lift him! I put him in the chair, gave him the yoghurt and he started eating it!! With the spoon, but then discovered he could get more by using his fingers! He ate about quarter of the little pot then got bored and started making a mess with it, he managed to rub it in his hair too lol, Ricky was in the bath so inhad to just go plonk him in there with him lol so proud of Lewis, ok I know I said he 'asked' for food when he never used his voice but he asked in his own way, 1st time ever and he actually asked for food and he actually wanted it to eat and not play with or anything :)

Hospital visit 16th August

Lewis had his endoscopy and tube change yesterday, results of the endoscopy are that yes his fundo is too tight!! At last, a year since he had the fundo done and we thought something wasn't right not long after, finally have an answer!! Only thing is now his consultant wants him back in within 6 weeks to have a little operation so he can loosen it off a little, Only thing there is my section date for bumpyroo is 6 weeks tomorrow and this operation requires a couple nights stay! So not ideal being so heavy pregnant but we'll work something out! Ricky had to take him up for 7.30 yesterday morning as he was 1st on the list for the theatre, he went down just after 9am He started realising something was going on an was clinging to daddy :( daddy held him while he was put to sleep, I done it last time and never again, it's not nice x I had to stay home for lewis's new supplies coming cos of the hospital switching pump and feed suppliers, and for training on the new pump! His new tube is the 'mini button' much more discreet than the peg and means no more popper vests to keep it from dangling loose and getting caught on everything, just trying to get used to having to attach the feeding set on and off whenever we need to feed him and he's not keen on me fiddling round with it but hopefully he'll get used to it cos it's hard to attach the set when he's wriggling away and trying to kick or push me off! Quite paranoid of the button coming out as I've not had training to put it back in yet! Oh and the new feeding pump is fab, a little more modern and a little less 'manual' consultant wanted Lewis to stay in last night, but after a little bit of treated like we were stupid n being patronised I was determined he'd be coming home, he didn't have any surgery, was just 2 little procedures n we were told we couldn't take him out the ward, yeh you try containing a hyper 21 month old to a tiny room and cot, while I massively pregnant try n sleep in a tiny camp bed when it was totally unnecessary for him to stay! Consultant said it was cos he wanted a night feed on the pump observed as there had been some problems with the buttons, but told him I was willing to have him on the pump for just a few hours n then get up n down the rest of the night to bolus feed, he was happy with that n so that's what I did, still got more sleep than I would have in hospital and had my own bed!

Hospital tomorrow

Not long after I wrote that post this morning I got a call from the hospital saying there had been a theatre cancellation in the morning and we can have it for Lewis! So he's to be at hospital for 7.30 in the morning and is in for a morning slot, he'll have a camera down his throat to look at everything on the way down and to check if his fundoplication is a bit tight, if it is they'll loosen it a little. Lewis will also be saying bye bye to the Peg Gtube while he's in theatre and saying hello to the more discreet mic-key button it he may get the mini button but I've told Ricky to ask if he can have the mini button as people keep saying it's a bit better, Ricky has to take him in the morning as I gave to wait home to take delivery of lewis's new feeding pump and new feeds (our dieticians has changed suppliers, so we need to get whole new kit of new suppliers things, pump, giving sets, feeds etc) not only do I have to wait for that but also some1 from the new suppliers coming to do the pump training with me, even though the dietician showed me the new pump we'd be getting and how to work it and it's pretty much the same way it works to the 1 we're used to, but nevermind, n we can't reschedule as it was a nightmare arranging the both as it was, in-between my hospital appointments, lewis's and nursery, so decided it better for Ricky to go with Lewis and that way u don't have to take Lewis into theatre and hold him while he goes under, I did it the last time and it was just horrible and so upsetting, reminding me so much of the last baby I held that was so still, our wee Nathan :( so then as soon as I've done all that I'll have to get Ricky to leave Lewis to come and get me, he's staying in for the night so hopefully I'll be allowed to stay with him.

Sent from my iPhone

Day to remember :) 11th August 2011 he swallows :)

Lewis is getting on great at the nursery, he loves it, and most of the time when i pick him up they say 'he tasted something today' or last week he was helping make angel delight and she said he had his paws in it before they could it to the fridge lol that's my boy, anyway, it never goes beyond tasting. BUT on the 11th at home, he ATE half a wee yoghurt, he actually really ate it, swallowed it and everything, the pot was empty, he squeezed every last drop, so he ate and swallowed half of it and the other half was all over his face, his highchair and his hair lol, i have a video i'll have to put it on somewhere so i can put it on here but haven't time just now as need to go get ready to pick Lewis up from nursery. i was soooooo proud of him, we were really hoping this was him turning a corner but sad to say he hasn't done it again, just makes a mess with everything but not actually eating, still though we KNOW he can :)

He's such a proper little boy and his speech is just great, he's running around like mad and he's just nuts, to think we were told he'd never play football or run around with the other kids, pfffft try telling Lewis that :) hopefully once his wee sister is here he may pick up a thing or 2 about eating from her, talking of which i have my section date :) princess bumpyroo will be here on the 29th September, the day after my birthday, best birthday present ever, the gift of our 2nd sunshine miracle baby :) have to run now will update with that video and some pics soon.

Swallow and empty study

Lewis had both these done on the 11th, was a quick visit to xray for them and as he was so well behaved they didn't take long at all. Ricky had to take him into thd xray room while u sat in the waiting room (couldn't go in cos of bumpyroo)I sent him in with questions to ask about etc and to watch the screen and see what was happening to the barium, bug typical man, came out and didn't have a clue, didn't ask anything either SJ we have not a tiny clue how it went and will have to wait till we get an appointment through to go and chat about it, who knows when that will be. We're also still waiting for the appointment through for Lewis to go get the camera down his throat and to have his Gtube changed!

Now he's so great on his feet he has started concentrating more on his speech and has a massive range of proper words now, so all round hex catching up in everything brilliantly :) he's such a character and I know I keep saying that but he is, he's just a lovely, lively, smiley, giggly wee boy.

Not sure if I mentioned before about his getting a referral to nursery from speech and language? She told us it was like 6 month waiting list and this particular nursery was so hard to get Into, hence needing referrals to get unto. Well I think they must have jumped the queue for Lewis cos after about 2 weeks from the referral going in we had a letter offering him 3 sessions a week, I don't think I'm ready to let him go yet but I know he'll love it and the main hopes with him going are that he may be more encouraged to eat when he sees other kids doing it regular. He has his induction On the 26thAnd he'll go Monday's, Tuesday's and Thursday's, 9am till 11.30am, it means we have a massive hassle of changing his whole feeding schEdule as I feed him at 11am and 4pm cos he sleeps after his feeds if we feed him after 4 he's late to his bed at night which means the pump is late going on and with him needing to get earlier starts for nursery he would end up falling short on his feed/calories, maybe nursery could be a bit flexible on his session times, I'll ask when we're in for induction.

Positive Hospital Visit

So Lewis had the clinic today, we seen a different consultant, he was FAB, gave us a decent answer to the question we've been asking for nearly a year regarding the mucous Lewis keeps bringing up, didn't fob us off like they always do and after a chat about that and various other issues he has booked Lewis in for 4 small procedures, 1st will be a contrast/swallow study to see how big his stomach is and how much he can handle in it, 2nd will be an 'empty' study to see how quickly his stomach is emptying it as he suffers constipation a LOT and so they have concerns there may be a blockage, 3rd he is having a camera put down into his throat to have a look at his airways and throat and to have a look at that side of the fundoplication as they think it may be a little on the tight side and if it is then they'll have a little wiggle at it to try and loosen it slightly, 4th while he is asleep having the camera procedure they are going to remove his Gtube and replace it with either the mic-key button or the new mini button which they are using more and more, we were hoping he'd have his tube changed today but agreed it best for Lewis to have it done while they have him asleep anyway, so hopefully this will all be in about 3 or 4 weeks time and he should only be in for the day, think i may see how we go about having this man be Lewis's new consultant lol i am so pleased that at last someone has finally listened to our concerns and seemed concerned over it himself and took it upon himself to do what needs to be done for Lewis.
They also seemed a bit concerned about the 'dent' on Lewis's side, where they removed muscle for his repair operation as it seems to be quite deep now so off we went to medical illustration to have photographs of it taking so they can keep an eye on it.
They are pleased with how he's growing and with his weight gain, according to their scales he is now 1 stone 12, but not sure how accurate they are as we always go by the scales at the health visitors and he gets weighed naked there and today he had nappy, jeans and tshirt on but am sure he's not far off it anyway. Oh and as for the feeding we are now at 60 mils twice a day :)
He is not just walking around now, he's running, and also walking outside with his reins on cos am scared of him falling lol, he likes to just walk everywhere it's so good to see, oh and to my absolute horror he can get ALL the way up our stairs, silly daddy left the stair gate open earlier and he was gone just 2 seconds and i found him half way up the stairs, i was horrified BUT on the plus side i don;t have to struggle carrying him and a big bump up the stairs now, so at bedtime when i said time for bed he took himself to the stairs, with me right behind him obviously he got all the way up without any help, he is a little monkey.
I've been really struggling for various reasons lately but Lewis sure was sent to keep me going my little sunshine warrior hero <3

Update

Lewis is doing great, he has become an expert at walking very quickly due to all his practice, all he done was walk up and down and round and round the living room all day long for a few days, he is great on his feet now and wants to be on them all the time, so we bought him a wee harness so we can keep a hold of him and prevent any bad falls or anything, he doesn't mind being on them, for now lol he does hate being held onto though or holding his hand. So now he's mastered walking he's moved onto his speech which is coming on loads so we're hoping by the time the makaton board eventually comes he won't really need it he does have quite a lot of words but as he was concentrating on the walking he wasn't really using them very often, but now is. He really is our ray of sunshine, he was certainly sent to make us smile, he's just such a good wee boy very sociable and happy. Few things this week about SALT really peed me off but i won't go into that for now as really don't want to rant on here, all i'll say is he's my son and i know what's best for him and i do everything i can for him and no1 will make me feel otherwise and when it comes to decisions about him, then i'll be the 1 making them thanks very much. Just wishing at the moment they would all just go away and leave us be, SALT isn't (in my opinion) doing what she was sent to us to do, but instead poking into other areas that aren't hers to poke into, so wish people would either do their own job or bugger off and leave us be!!
We've been stuck on the feeding at the moment well till now i'm just about to push the last of his bolus witha n extra 5 mils in this 1 taking him to 55mil boluses, he's doing so fab with this, a huge improvement from taking only 30 mils, we've tried this so many times but failed but this time seems to be his time and he's readt this time, so here's hoping we reach our 100 mils goal in a couple months :) and also he is now putting a dummy all the way into his mouth but still not sucking it, just keeps it between his teeth, he gags on it eventually but still it's something. So proud of him for all he has come through and all he has achieved in his 19 months.

HE WALKS!!!!!!! :)

yesterday at 18 months and 2 weeks and 1 day old Lewis walked, proper walked across the kitchen, then we had him walking up and down the hall, which is fairly long for a small person walking, he wouldn't walk off just by himself unless we encouraged him or set him off, till last night he was sat on his little toy rocking chair and just stood up and walked off lol, i was soooooo excited for him his wee face he was sooo pleased with himself and it's sooo weird having this tiny wee boy walking round....yes i said boy and not baby :( my baby is no longer a baby, he is officially a TODDLER :) (still not eating though)

But on the feeding front, i have started trying again to up his bolus amount in order to reduce his night pump amount, it will be a very long process, when we started he was on 30 mils 3 times a day, he wouldn't tolerate anymore, always made him sick and made him cry cos it was so uncomfortable, so to cut the long story short i cut out 1 of his boluses during the day so he now only gets 2 feeds a day at 12pm and 5pm, with the larger gap inbetween he seems to tolerate more, we started off small just a couple mils at a time increase, anyway in the space of a couple of weeks he is now up to 50mils at both his boluses, haven't been able to reduce the night pump as yet as his increases aren't big enough as he was suppose to get 100 mils through the day before but would only take the 30 mils at a time so was just 90, but now he's on the 100 a day, so are where we're supposed to be at, but taking 50 mils at a time is huge for him, but we are having to feed him very slowly till he gets used to it, once we're able to speed it up a little to a normal pace then we can think about upping it a couple of mils again and then can obviously reduce the pump at night accordingly :) small steps and all that, he's doing great :) still has the mucous problem though, was going to bring it back up again at his next appointment, whenever that is, he's due back next month but as yet no letter so think i'll have to get chasing it up.

Oh and speaking of Night pump.....for the 1st time, Lewis managed to disconnect his pump from his Gtube last night, and wasn't till 5am when he woke up crying and i went through.....OMG the cot was covered in his feed, Lewis was covered in his feed, it was ALL i could smell and it's horrible, so had to get him up, strip him clean him down and pop him in our bed, luckily Ricky was working last night or don't know where i'd have put him lol, then i had to strip the cot, clean the cot and then the mattress, it was soaked through 1 big patch, so had to get a towel and put it on it then lean on it so i could soak up as much as it would, then scrub it, it's drying out now so just hope it doesn't smell else we'll have to buy a new 1 so will see how it goes. Anyway, Lewis hates not being in his own bed, he slept till 5.30am so he had about 15 minutes in our bed, then he just kept moaning A LOT but i couldn't give him what he wanted cos was no mattress or anything in his cot lol, so listened to him moaning and crying from half 5 till Ricky got in at 9, even the cartoon channel didn't distract him, all he wanted was his own bed...grateful for that i suppose, i guess a lot of kids cry to get OUT of their cot not to get IN it lol.


We also have some other good news from yesterday i'd just like to share, we had our big anomaly scan (we had a pre anomaly 3 weeks ago) and we are having a perfect, HEALTHY little girl we are just over the moon at the fact bumpyroo is healthy, this is our 5th pregnancy and no healthy babies and only have our CDH'er Lewis with us, we were told all looked well 3 weeks ago but i didn't believe it as it was with a new consultant i didn't know, but this time i was switched to another new consultant, she is THE best there as she trained with the fetal medicine unit at the other hospital, we spent sooo much time in that unit both when pregnant with Nathan and having his HLHS confirmed etc and all through our pregnancy with Lewis so there was no doubt in my mind when she said bumpyroo was healthy, so glad we seen her now as i think if it had been the other new 1 i had last time i still wouldn't have believed it :) so there Nathan and Lewis will be the proud big brothers to a beautiful little sister :)

STEPS!!!

He did it he took 2 steps the other day! He was soooo chuffed with himself, maybe my over excited reaction egged him on because he did it again, and yesterday he walked the length of our sofa over to the chair which is next to it, walking alongside so he grab on if he needed to but he didn't :) so proud of him, he just doesn't quite get the fact he could walk across the living room if he wanted to, he still lacks enough confidence to go completely solo but he won't be long now :) his speech is also coming on and he can say certain things in the right context, we're still going with the mackaton signing with him and are now recording every episode of 'something special' he loves it and there's lots of signing on it too :)

He CRAWLS :)

Yes he did, he really crawled :) yesterday when his daddy nipped out, he was just sitting on the floor then leaned forward onto his hands which he's done loads, but went over onto his hands and knees, which he's also done as that's the position he gets into to sit up from lying down, i seen him out the corner of my eye, i seen his knees moving so i turned to watch and he crawled about a foot then turned and sat on his bum :) needless to say i was VERY excited and he loved my excitement so proceeded to do it again while laughing, and then i was doing it with him to encourage him to move a bit further and he did, he crawled the length of our living room :)

Funny thing is the physio lady was out in the morning and she said he probably wouldn't crawl now as he's found his bum shuffling to get him around and will be walking very soon so would probably never crawl as wouldn't need to, well i bet he heard her and just had to be his little defiant self :) at 18 months old our warrior crawled, we're just so proud of him and he couldn't wait to show daddy when he got back in :)

we had the SALT back out also yesterday, after being AWOL since october, never really touched upon his 'non eating' just asked what he will eat etc which is nothing, told her about his frustration at not being able to communicate as he has a very lot to say but can't and so gets frustrated easy, she's going to draw him up his very own personalised Makaton board so we can learn to sign with him, he knows a few already but she's going to draw us up words that are personal for him, she said normally it would be food words but as that doesn't apply to Lewis it won't be any good, so i'm looking forward to being able to communicate more clearly with Lewis and hopefully ease his frustrations, well some of them anyway.

He is showing much more interst in food, still won't touch or eat anything but is straight to us if we have something, trying to put his face in it to smell it and want's to just poke at it, but not hold it or touch it properly and won't taste it, just shouts NOOO and shakes his head if you ask him if he wants a bit.

Still in amazement at the difference his physio boots have made and the Physio women was really impressed with his progress, she says he probably won't need a 2nd pair of special boots but rather just some special insoles for normal shoes. He keeps giving me heart failures with his shenanigans though, he can climb up onto his little rocking chair thing and onto the top of his toybox at the windowsill AND get himself back down, which is his new trick lately and i keep thinking he's going to fall. He can climb onto his little ride on car by himself, found that out when he appeared from the side of the sofa sitting on it and then scooted across the floor on it with a big cheesy grin and we're like how the heck did he get on that lol, and now pulls himself up on his walker and walks along with it, he came all the way to the kitchen from the living room all by himself today and he is cruising like a trooper around EVERYTHING :) he still lacks some confidence but won't be long till he's walking around being me all by himself :)

Sitting from Lying (17.04.2011)

his trick of today (seem to have new tricks everyday lately) :)

Make an on-line slideshow at www.OneTrueMedia.com