Saturday, 28 May 2011

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 :)

Wednesday, 25 May 2011


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 :)

Tuesday, 17 May 2011


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 :)

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