Wednesday, 28 May 2014

Reuben’s Tummy: An Update

Last time I blogged about this, Reuben had just had his second gastroenterologist appointment and were waiting for an endoscopy. If you read that post I just linked, you’ll get a great big overview of what’s going on… in case you’ve missed it!

So, in December, we had the endoscopy. It was weird, scary-ish. He was meant to be second in line for the procedure that day, but because the little girl who was scheduled before him had drunk too much juice (they had to drink 50ml of apple juice before the procedure) he got swapped and was lucky enough to be first on the table for the day. I got to go into the theatre with him until he was put under. I was a bundle of nerves… I’ve never been under a general anaesthetic, and the idea of it scares me… and here was my little baby about to have one! I kissed him goodbye once the ‘knock-out gas’ had done its thing. The procedure is relatively quick, and then it was just a matter of waiting for him to wake up. Post-anaesthetic Reuben was very grumpy, but also a little funny. Reuben’s Gastro was pretty happy with how things went, the good news was that there was no visible scarring on his oesophagus, which had been one of our concerns. As for the rest of it, we would have to wait for the biopsy results…

Fast forward to a few weeks ago, when we finally had our follow up appointment. Things move slowly in gastroenterology. There is such a small number of Gastro specialists in our state, they definitely get busy!

Long story short, it’s looking like Reuben has an Eosinophilic Gastrointestinal Disease (EGID), most likely Eosinophilic Oesophagitis (EoE). Crazy big words huh? So basically, it boils down to being an allergy disease.. much like eczema, only on the inside. An allergy occurs when the body mistakes a non-threatening food (the allergen) as something bad, and attacks it. For Reuben, this happens when the allergen passes through his oesophagus, and causes a build up of eosinophils (white blood cells). So his biopsy showed a reasonably high count of inflammatory cells in his oesophagus and duodenum (small bowel). Back when he was a lot smaller, his oesophagus was really tiny, and the inflammation would have been so bad that it would have essentially blocked the oesophagus (hence the weird barium study results), and caused copious amounts of vomiting. As he’s gotten older, and bigger, the oesophagus doesn’t necessarily get entirely blocked, and the vomiting decreases (in the second barium study, when he was over one, they saw that it was slowed, but not blocked… he was a lot bigger then than he was in his first one).

This is a really great little video that simply explains the condition.

So what now? First thing we have to do is find out what Reuben is allergic to. Reuben’s inflammatory cell count was not quite high enough to make a confirmed diagnosis of EoE, but his Gastro called him a ‘borderline case’ and said that it is bad enough that if we don’t work on fixing it, it will get worse. Inflammation of the oesophagus has pretty yucky long-term risks, so we really need to find out what is causing it.

Unfortunately for an allergy like this, a skin prick test or allergy blood test is not going to be accurate. Reuben’s Gastro in fact said that it would be a waste of time, because his reaction is delayed and compounding, and those tests really only show results for immediate reactions. So now the fun begins.

For six weeks, we have to eliminate the following foods from Reuben’s diet: dairy, soy, wheat, fish, eggs, corn and nuts. Phew! As you can imagine that really doesn’t leave a whole lot. And can I just say, soy and corn are in EVERYTHING. I thought those two would be the easiest for us to avoid, because at face-value I didn’t think we ate a whole lot of them.. but yeah, we do.. and you probably do too. Also, pretty much any gluten/wheat-free product is guaranteed to contain either corn, soy, or both, so that’s fun. Anyway, we go allergen-free for six weeks, and then we reintroduce the allergens one at a time, each one taking 1-2 weeks, and observe. We look at Reuben’s symptoms.. the vomiting (which has really slowed down in the last few months, thank goodness!), bowel movements (which were MANY and gross and all kinds of unpleasant), nappy rash (the condition can cause very acidic faeces) etc. He will also have another blood test to check how his iron levels are going (he is still on is iron supplement as he was still quite anaemic), and he is still on his acid suppressant medication. It hasn’t been mentioned yet, but from the reading I have been doing online and in a Facebook support group for parents of children with EGIDs/EoE, it is possible that he will have a follow-up endoscopy to make sure those inflammatory cells are leaving his system.

Can you believe it! I can’t. It is certainly overwhelming, but I am so grateful that I listened to my Mama-instinct and pushed to get this thing followed up. I praise God for out amazing health-care system that has allowed us the opportunity to access highly skilled specialists who could give us some answers. Mind you, joining the facebook support group I mentioned before has shown me how blessed we are that Reuben has such a comparatively mild case of this condition.

This diet is pretty full on. I have to make most things from scratch, and he is missing a lot of his favourite foods – particularly dairy. He as to drink this disgusting elemental formula called Neocate. It’s got pretty much everything he needs to survive in it, and will help him to stay healthy and gaining weight while he is off so many essential fats and proteins. He’s doing so well with drinking it (I dress it up with honey, chocolate or in a banana or berry smoothie). I’m so grateful that we still have access to the thermomix, and it is definitely making things easier. I have used it to make my own everything-free flours (commercial gluten-free flours are made with corn), milks (coconut, rice, oat), breads, and lots of other yummy treats. Without having had the thermomix all these months, I never would have had a lot of these ideas for alternative foods on my radar, and it’s made a huge difference. I’m being as creative as I can to find ways to give him alternatives to his favourite foods, and most days we are doing ok. Sometimes I just feel really sad for him though, when he knows that the ‘milk’ I’m giving him is not milk at all, or when he sits next to someone at Mainly Music who is eating a piece of his beloved cheese. I think the fact that he’s old enough to know what he wants and likes, but still too young to really understand why Mama is suddenly not feeding him those things!

But. We are getting there, and doing this diet and finding his allergen is going to be the beginning of the end of this long journey, and I can’t complain about that! If you are interested, you can follow the hashtag #reubenseliminationdiet on instagram to check out some of the allergen-free foods I’ve been making for Reuben, and I will update here as we go. Thanks to everyone who has followed along on this journey so far, I’ve had lots of support and it is so appreciated!

Tuesday, 27 May 2014

Quinten 365 {9/52}


57/365 | Our very own Meme Baby. Seriously. That face!


58/365 | Snugglepot


59/365 | Bros. Besties.


60/365 | That smile!


61/365 | Morning tea with my boys.


62/365 | Quin’s first visit to The Block. And snuggles with Grandma Suki.


63/365 | Eyebrows. Yeah we did.

Monday, 26 May 2014

Quinten 365 {8/52}


50/365 | Those eyes.

51/365 | We didn’t take a photo :(


52/365 | Tummy time chats.


53/365 | snoozy


54/365 | Meeting Poppy Goose. Pop said he looks like a gecko.


55/365 | Chats with Nanna Joy


56/365 | Ready for church.

Quinten 365 {7/52}


43/365 | First time in a shopping trolley. So nice to have all three children contained while out and about.


44/365 | The shirt. Says it all.


45/365 | pensive


46/365 | Quinten is back there somewhere. Roadtrip day… we were off to Esterfest!


47/365 | Quinten’s first Easterfest. First of many.


48/365 | Probably the cutest baby at the festival. Definitely.


49 /365 | Definitely the best behaved baby at the festival.

Quinten 365 {6/52}


36/365 | morning cuddles. Quinten loves to look out of the window.


37/365 | went to the movies where Quin tried out his ear muffs!


38/365 | Captured the smile!


39/365 | Always enough room for everyone for Mama snuggles!


40/356 | A pirate family!


41/354 | Mama and her boy


42/365 | Super baby!

Quinten 365 {5/52}


29/365 | snuggle-bun


30/365 | Time to introduce the dummy. Note the self-inflicted hickey on Quinten’s arm!


31/365 | So snoozy


32/365 | ONE MONTH OLD!




34/365 | more sleepies


35/365 | Quin’s first family holiday

Quinten 365 {4/52}


22/365 | Brothers. 


23/365 | I’m watching you Mama!


24/365 | he has special looks reserved especially for his sister.


25/365 | That yawn! It doesn’t look comfortable.


26/365 | Meeting his Great Nana Joy for the first time.


27/365 | Quinten’s first wedding.. snuggles with the gorgeous bride, Rhaman.


28/365 | I have the prettiest baby…

Thursday, 8 May 2014

When my computer won't talk to the Internet...

Something in my computer is broken, and now it isn't talking to the Internet anymore. At first we thought it just had issues with the wifi, but then Peter tried to connect it with a network cable and it still wouldn't work, so apparently we need to take it to someone who knows more about these things than we do. In the meantime we can at least still access things on our phones or iPad or Pete's slightly dodgy and very frustrating little netbook. Blogging, however, is a pain in the neck without the Internet on a computer. I have been taking all my photo a day photos of Quinten to share here, but I've put it in the too-hard basket until the computer is working again because formatting things on the Blogger app is difficult. But I thought I could manage a quick catch up :)

Yep we are those weird parents who draw eyebrows on their baby and then die laughing while taking photos of the result. 

Quinten was two months old on Saturday which is just ridiculous. He is already wearing 000 clothes and is the same weight that Mayana was at 5 months. He can roll over from his tummy to his back, and you should see how far he pushes himself up in tummy time! He has smiling down-pat, and even produces the odd chuckle. He does lots of cooing and chattering. He is still feeding beautifully - it looks like third time's the charm for me and breastfeeding. He wakes once or twice a night to feed and mostly goes straight back to sleep once his tummy is satisfied so I can't complain! He is so relaxed, but I think we are super relaxed this time too, so maybe we are rubbing off on each other. 

Reuben was two on Easter Saturday, which is also ridiculous. He is a bundle of fun, and I am loving our days together. His vocabulary is exploding at the moment, and it's really nice to be able to communicate with him conversationally. He's super cheeky, and absolutely adores his baby brother, whom he calls "Tintin". We are easing into toilet training (mainly because having two in nappies is not my idea of a fun time) and he does a lot of wees in the potty in exchange for a smartie, but so far no number twos. This morning he sat on the potty while eating morning tea and watching his Fireman Sam DVD for half an hour, then pooped within five minutes of having his nappy back on. Gah. We'll get there. He also has his post endoscopy follow up with his gastroenterologist next Monday, finally!  Reuben is still addicted to any kind of vehicle, but with a soft spot for emergency services vehicles. Fireman Sam is is favourite show ever, and he took it as a personal afront when ABC4kids removed it from their morning programming earlier this week. Hence the aforementioned DVD. His godfather is a bonafide fireman, and has arranged for Reubs to visit him at work and sit in the fire truck next weekend.. I can't wait to see his face! 

Mayana is settling into school beautifully and absolutely loving it, like we knew she would. We had out first ever parent-teacher interview last week (which made me feel like an actual grown-up) and her teacher is "absolutely thrilled" with Mayana's progress. As are we. She's kicking it with literacy, and knows almost 30 sight words already (the goal by the end of prep is 60, so she's pretty amazing), and is on level 2 readers. She completely blows me away, and having her sit next to me and literally read me a story almost makes me cry. She is also just an all-round precious girl and a joy to be around. I have lots of fun with her, and she's an amazingly helpful and loving and patient big sister. At the moment she's addicted to "Frozen" (along with every other girl between at least the ages of three and eight I'm sure). She knows all the words to pretty much all the songs and we have had the sound track on repeat in the car since we bought it. Actually I'm pretty sure I know all the words too. And Reuben does a pretty fabulous rendition of "Let it Go"... Seriously. 

Peter's latest accomplishments include growing a beard (which took all of two days) and completing his Certificate III and Diploma in Children's Services. He is still really enjoying his work, which is a very good thing! Oh his other recent great accomplishment is that he pulled off a fantastic birthday present for me last month, where he had booked a night away for the five of us at a completely divine country getaway with a view to die for. It deserves a post all of it's own.. When my computer is talking to the Internet again. 

 (Photo by Mayana. I haven't actually grown 5 inches since you last saw me)

And me? I'm doing great. I've settled into a pretty good routine with school and a new baby and all. I've discovered that routine and organisation are the key to keeping on top of this gig. Little things like instead of an overflowing dirty clothes basket, the entire family puts all their dirty clothes into the washing machine when they come off at night, I put the machine on before bed and hang it all out first thing in the morning. I bring it in and fold it when the boys go down for their afternoon naps (OMG "the boys"! Can you believe I've got boys- plural!!? Sheesh). Anyway, I haven't made acquaintance with Mt Washmore or Mt Foldmore since putting that nifty trick in place. Yeah sure I wash the darks with the lights but.. Separating washing?? Ain't nobody got time fo' that. Clean clothes are where it's at. 

Breastfeeding this time is far less stressful, and I actually relish the 6-8 forced opportunities I have each day to sit with my feet up guilt-free. Plus I don't know if it's the breastfeeding or the getting back into the swing of sugar-free life, but I've dropped all of my baby weight plus an extra three or so kilos.. So I'm pretty happy about that! That brings it to nearly 15kg since quitting sugar 15 months ago- which isn't too shabby given that I haven't done anything else (like an exercise regime or anything) and I've had a baby in that timeframe too. I'm about 4kg away from my goal weight and I'm pretty stoked!

So there you go-- you're all caught up on the five of us! Now I just need to get my computer to the shop so that I can get all caught up on my blogging!

Later gaze!!

Blog Template by