tube weaning

Tubie, or not Tubie: that is the question!

When I left you last I was about to run a half marathon.  Well that was six weeks ago.  Doesn’t time fly when you are running around like a blue arsed fly all the time?  I was chuffed to bits with my time.  I was hoping to complete it in less than 1 hour 55 minutes and I managed it in 1 hour 47 minutes.  I have no idea how I pulled that out of the bag.  I think most of the credit has to go to Pat’s Circuit class as thats the one thing I’ve been doing religiously when it comes to exercise.  So now I need to start training for the Great North Run on 9th September.  I had big plans to go for a great time.  And then we got a wedding invite for 7th September.  When I was pregnant, I went to a few weddings and obviously couldn’t drink.  I have to say weddings have to be one of the worst things to attend sober.  So now I’m torn between wanting to get a good time in the Great North Run and not wanting to stay sober at a wedding.  Oh the trials and tribulations.  I will definitely be running it; I am raising money for The Childhood Eye Cancer Trust.  They were absolute legends when Daisy was going through treatment for retinoblastoma.  If you’d like to sponsor me then I would be hugely grateful.  If you can’t put out a shameless request for sponsorship on a blog, where can you do it?

Click here to sponsor me in The Great North Run

Lots of big things have been happening since my last blog post.  We had the lovely chaps from Forth Paving with us for about 4 weeks revamping the garden and paving the driveway.  We live quite near a river and when it rained the garden was like a bog for weeks.  It rendered it pretty much useless.  So we bit the bullet and have had it dug out, drainage put in and astroturf put down.  We wanted the bambinos to be able to use it all year round and for it to be maintenance free.  I certainly don’t have green fingers!  The guys did an amazing job.  Couldn’t recommend them highly enough.  We’ve been out in the garden pretty much every day since it was finished.  Daisy can get about it on her Scooot and they have even built a ramp from the doors out to the garden for her.  Here are some before and after pics for you.

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The Tidy Tyrant’s Mini Me (Poppy), has been very busy reaching developmental milestones.  I’m finding it hard to keep up with her.  I’m not used to these typically developing babies.  She seems to have managed to start eating, sit up, get from lying to sitting, standing up in her cot and start crawling with hardly any time between them all.  I’m blown away with the speed at which she learns things.  Yesterday she took about two wee shuffles to crawl forward and today she’s crawling.  It took Huxley months to perfect it.  He commando crawled for about three months before he crawled properly.  It’s bonkers.  She’s got some way to go before she reaches the speed at which Huxley crawls right enough!  Then I’ll really be in trouble.

Huxley has come on leaps and bounds with his walking.  He still chooses crawling over walking most of the time, but then why would you bother walking when you can crawl like a little hurricane?  I thought I’d get their little red books out and have a look at the milestones in there.  I was chuffed to bits with Huxley.  He has just turned two and has met all of the developmental milestones for an average 18 month old and I was able to tick off a significant number of the age 2 milestones.  Thats pretty awesome considering he’s got Down’s Syndrome.  He’s such a little legend.  I’d say the thing he is most delayed with is his speech.  The last few times we have been to audiology they have struggled to get a solid result for his hearing as he is constantly congested.  They said if he is like that again then we may need to make a plan.  I have been in touch with them and he’s going for another hearing test in July.  I definitely want them to make a plan (grommets maybe?) if he is still congested.  I know his speech is likely to be delayed due to the Down’s Syndrome, but I feel he is doing so well another areas that he should be making more sounds than he is.  I don’t want his hearing to hold him back even further.

We are making good progress all round with eating.  Feeding the three of them is very time consuming and I need them to be more independent for me going back to work in August.  Well, Poppy and Huxley anyway.  Huxley can now use a spoon relatively well so I can now leave him to his own devices with weetabix.  It has expanded the range of breakfast foods available to him.  Poppy is coming on with finger foods and I can leave some foods in front of her and she is getting more successful at getting them to her mouth.  I’ve also discovered the wonder of a breakfast smoothie.  I’ve been throwing in some fruit, cereal and milk into the nutribullet and serving it to them in a straw cup.  Tis marvellous.  They can both manage this themselves.

Daisy has been to two friend’s birthday parties recently.  In the past she has really only been able to sit back and watch rather than join in.  I can’t tell you how chuffed I was when I could sit her on the bouncy castles at these parties to join in with the others.  She absolutely LOVED it.  It’s down to rebound therapy that she’s been able to keep herself balanced on them.  I would have uploaded a video for you to see but there were other kids in it and it wouldn’t be right to share a video of them.  I think one of the biggest fears for parent’s of children with disabilities is that they won’t be included.  I love that all my friends invite Daisy along to everything even if they aren’t sure how much she’ll be able to do.  It really  means a lot to me.  She’s going to an ice skating party in a few weeks!!!!

I got myself some Cheeky Wipes last week.  I was sick of buying over 5 packs of wipes a week.  They never come out one at a time, it takes millions of them to clean a stinky bum and well they are bad for the environment.  So despite being somewhat concerned about clogging up my washing machine with poo, I went for it.  And I have to say they are blooming marvellous.  They are like little face flannels that you soak in water and essential oil.  They smell lovely.  You get a ‘mucky box’ which has water and another essential oil, and thats where you soak the dirty wipes before washing.  Even that box smells good!  They do a much better job of cleaning up too.  Even Huxley’s cement like number twos can be cleaned up in two or three cheeky wipes instead of a bajillion regular wipes.  So here I am spreading the word.  Get yourself some cheeky wipes.  I even have a discount code for you all (ok so I get a discount too if people buy them, but everyone is a winner!).

Click here to get yourself some discounted Cheeky Wipes

I am always on the look out for a ready meal for the bambinos for when we are having a take away or I just can’t be arsed cooking.  It is complicated by Huxley’s dairy allergy.  Loads of kids meals seem to have cheese stuck in them.  I also get peeved by the range of meals on offer for kids.  It’s invariably chicken nuggets, fish fingers, pizza and sausages.  I’ve made a big effort to keep Huxley away from beige foods as I don’t want him to become the fussy little b*gger I was as a child.  I was in Marks and Spencer at the weekend and came across their Mini Meal range.  I don’t think it’s designed especially for kids, more for people with small appetites, but the meals are ideal.  I picked up chicken casserole with dumplings, beef casserole with dumplings and a beef hot pot.  There were some other great options too, but they had milk in them.  And they can be cooked from frozen.  Marvellous.  So far we’ve only tried the chicken casserole but it went down a storm.

While perusing Facebook recently (something I do far too often to be fair), I stumbled upon a group called Growing Independent Eaters.  It is a company based in the US who have a home based tube weaning program and they have a 95% success rate.  It got me intrigued, inspired and motivated to do something about Daisy’s tube feeding.  There is no medical reason that Daisy needs to be fed through a tube.  It was put in place when she was a tiny baby when she she had a weak swallow, and got her through chemotherapy.  But these reasons no longer exist and yet she is still 100% tube fed.  She has become dependant on it.  Essentially she is always full and has never been hungry enough to drive an appetite.  The premise of the tube wean is that you slowly reduce the amount of food you are giving through the tube to drive hunger and initiate appetite and eating.  Now that makes it sound very simple.  It’s far from it.  She would take a while for her appetite to come back online.  In those days/weeks she would most likely eat very little/nothing.  She doesn’t know how!  She would lose weight.  The weight loss has always been my reason for not doing a tube wean.  I’ve worked so so hard to get her to gain weight and the thought of her losing weight is terrifying.  But I have realised that as long as she is tube fed, she is never going to gain much weight.  I have also realised that she’s probably not just going to start eating one day.   The older she gets it will become more engrained in her that she is not an eater.  Something would have to change for her to become an eater.  So I am seriously considering a tube wean.  I know it would likely be the hardest thing I ever do in my life.  But it could also be the very best thing I do in my life.  I think its success really depends on us as a family.  Are we strong enough to get through the bad days of Daisy not eating?  Can we cope with her losing weight?  We are meeting with her Dietician and Speech and Language Therapist on Monday to discuss all the ins and outs, ups and downs.  If any of you have experience of a tube wean, I’d love to hear from you.  It’s such a huge, life changing decision.

It seems to be very common that tube fed children vomit regularly and struggle to gain weight.  While reading all about tube weaning I have discovered that there is a general consensus that tube fed babies vomit regularly due to overfeeding.  Basically we feed them the same amount every time at regular intervals.  We’ve medicalised their feeding.  Like us, their appetite varies but we keep on feeding them the same amounts.  We end up feeding them too much, and instead of just bringing up the excess that they have eaten, they generally bring back everything they have just eaten.  Thus the struggle to gain weight.  Hopefully by tube weaning Daisy and trusting her appetite to ensure she eats the right number of calories we would see a reduction in her vomiting and eventually see her start to gain weight.  I can’t tell you how much I want that for my little Daisy Doodles.  Imagine if we took her to her favourite restaurant and she actually ate the food!  Although maybe we’d discover that we’ve got her favourite restaurant all wrong!

On lighter note, I think I’ll go and celebrate Daisy’s bum shuffling and Poppy’s crawling with a twix before The Tidy Tyrant gets home and discovers my stash.  Normally I would celebrate with a prosecco but I’ll leave that until tomorrow night.  It’s our third wedding anniversary tomorrow and will be the first anniversary that we haven’t spent in different countries from one another!


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