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

Pics

1st pic is when he 1st pulled himself up to sitting and then standing in the cot, look how chuffed he is lol

2nd is when he 1st pulled himself up on the radiator to look out the window

3rd earlier today, Lewis is definitely trying to crawl :)

4th he pulled himself up on the hall radiator

and the other 2 are just some cute extras :)

Slow Down Lewis :)

i am absolutely AMAZED at the huge difference these boots have made in such a short space of time, in the space of just a week, Lewis has been 'cruising' around the playpen and pulling himself up on it, giving him the confidence to pull himself up on anything and everything, his favourite is to pull himself up on the radiator in the living room and stand looking out the window, watching the kids outside playing, he is itching so bad to get out there with them :)
when he has the boots on they are helping his balance so much, you can see the difference when he has them off and can actually see how weak and soft his feet are, he's practicing at trying to let go of the play pen when he's standing up holding onto it, and i caught him today working out if he should take the 2 steps towards the tv even though he had nothing to hold onto, i knew he'd fall straight into the tv unit so had to discourage him trying that, he's just not quite THAT balanced yet, but 1 thing is for sure, he won't be long till i turn round and he's toddling behind me not holding onto anything.
so yeh what a week, i just get so excited for him, people may think it's mad as like 1 friend pointed out that 'normal' parents would be syaing oh so whats the big deal, my baby could do that at way younger than Lewis, but so what, Lewis is unique, he is STILL kicking CDH butt at 17 months old, such a long everyday battle but 1 he is determined to beat :)
oh the newest thing is now he can sit up from lying down if he has something to pull himself up on, like the cot bars, yay his tummy muscles are getting stronger :) funny when i put him to bed lying down, next thing i peek in he's sitting up, or even standing up! in his cot lol and i THINK he's actually trying to crawl, he's doing what he should have been doing like a year ago, he will now go onto his tummy and push up his hands and he wriggles his legs, which i think is down to his tummy muscles getting stronger and being able to cope with his weight on it a little more, he'll only do this for a couple of minutes but hey he has always absolutely hated being on his tummy, so yet another HUGE thing for him.

As for the eating...he likes to 'feed' me, he was giving me imaginary food the other day lol so when i gave him so real food, yep he was feeding me...and you could see he had his thinking cap on, thinking about every movement he made from pickin off a bit of the cheese to putting it in my mouth, so he deffo knows what to do with it, so we played a game, bit for mummy, bit for Lewis, excpet he NEVER goes past just 'pretending' he's eating it, he'll quickly touch his lips with it, then pulls it away and you can see him 'chewing' but still it's something and it shows he know exactly what to do, we don;t push him to eat anymore, we go with the thinking that maybe once he's a wee bit older and can understand a wee bit about food etc, plus the more you try to push him the more he 'runs' away from it, so i guess it's true what they say, he'll do it when HE wants and learns how to not when we want him to, the main thing is he is happy and loved and doesn't want for anything and that's the main thing for us :)
I will post some pics tomorrow of Lewis being a show off :)

New Boots and a scary announcement

Well we picked up Lewis's special boots from the physio on Wednesday, they are so tiny and cute, also so very stiff, but that's the idea, specially ordered in through physio as they're much stiffer than any you could buy in the shops.

We're still weaning him into them and today was his '3 hours' in them, increasing an hour everyday. He's doing well in them and we can see a difference when he's stood up now his feet are properly supported.

Haven't really mentioned anything about his reflux for a while as we've been trying to figure out what's going on...he had the fundoplication in July 2010, which made a big difference and stopped the reflux completely for 2 months, then he started getting past it every couple of days, then it was couple of times a day and when he had his last consultant appointment in December all his reflux meds were stopped, then it started......he hasn't had a full nights sleep from about a week since the meds were stopped, we put it down to teething and he has had 4 big teeth pop through in the past month, but no sign of anymore for now, but still restless and crying on and off all night, he's still bringing up really really sticky bubble mucous at least 3 times a day, choking on it because it's so sticky and bubbly, then panicking trying to fight it and it ends up going down the wrong way, it's just aawful and can get really scary :(, his nappies are absolutely vile, as is his breath, sometimes he brings up his feed within a minute or 2 of getting it, sometimes he brings up the water we give him through his tube, so we're suspecting reflux again but more of a silent type as opposed to how it was before his fundo when it was milk fountains every single feed, he never seemed in any pain from it then, but now he does and he cries everytime he sees a syringe :( after he's been fed he just lies there like he's so full and looks like he's feeling really sick and uncomfortable but he only gets 30mils at 12pm, 3pm and 6pm as that's all he'll tolerate, he's on the feeding pump from 9pm till 9am, we're at 41 mils an hour as that's his toleration when relaxed and asleep, so he doesn't get very much 30 mils is nothing really and every 3 hours, it's like he's still on newborn feeds.

ok so the announcement......Lewis is going to be a big brother...again but better news so far this time, we're just 13 weeks and will have our anomaly slightly earlier in about 4 weeks time, absolutely terrified for that wondering what the problem will be this time, our 5th pregnancy and so far only have 1 survivor, Lewis xx but trying to just enjoy the next 4 weeks knowing that at this precise moment we don't know if anything's wrong, plus i picked up a beautiful wee heartbeat on the doppler 2 nights ago, so we have bonding on the agenda for the next 4 weeks :) have had a few scans so far and my plan of care is excellent and i'm under the best of doctors who listen to me and do all they can to 'help' xx

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.