Day 9 - no morning dose, but an afternoon low profile PEG!

Here it is!

I read to Evan from the final "little book" at the end of my book, "the continuing education of oversoul seven" and it spoke to him of magic and that each of us is charmed. Beautiful thoughts to lead into surgery theatre.

Evan is especially happy this afternoon.
I'll slow-feed him now after the fasting since 130am, but plan to give afternoon and evening Univera treatments before bed.

It's so nice not to have a tube to tangle with on picking up and cuddling!

Day 8 - more of the same

Really, nothing new to report today.
Same dosages of all 3 products.
BM in morning only - loose, but not too much.
Swallowed Aloe Gold orally again [maybe lost 1-2 mL with spit out / dribble that followed].

Happy chap.

Tomorrow we have to omit the morning regime because Evan must fast: off to hospital for a PEG change from long tube to tummy PEG...to a short and low-profile 'button' PEG. We're looking forward to it so that Evan doesn't have it in his way or 'tug' reach.

where were we - Day 7?

OK - same dose, morning and night Aloe Gold 12mL.
Given in the a.m. with fruit puree. At night Evan took it pure - and orally: great swallowing!

Afternoon saw the introduction of Essentials half bottle/50mL, along with Ageless Xtra 50mL [should we give this at the same time?] - diluted with water +/- 30-40mL

Still only 'tasting' foods, but swallowing with a little more ease.

BMs both morning and afternoon: kinda clay-like now.

Good / normal 730pm to bed time.

Aaahh. Good for me too [kids in bed that is - time for Russ and I and relaxation].

Day 7 - school observations

same dosages.

Morning: Aloe Gold [gel] 12mL - mixed with +/- 3tbsp fruit puree, fed orally.
BM: keeps on moving in the mornings...loose.

Afternoon: Ageless Xtra 50mL diluted with 30mL water - syringed into PEG.

Evening: Aloe Gold [gel] 12mL fed with mashed spud.

Woops - I was supposed to start the Essentials yesterday and didn't. It will have to start tomorrow/Day 8.

Where are my days going to?

Another woops - maybe not a good idea that I combined the Ageless Xtra with last overnight feed...a very small vomit, but a vomit none-the-less, overnight. And as I said before, it's aspiration pneumonia that is the greatest threat for Evan, which could be caused by overnight vomits.

But on a very good note, I had some valuable feedback from Evan's Education Assistant who had not seen him for a week: Evan's known to be a naturally happy and beautifully natured boy, but the EA said that she was surprised how much more happy within himself Evan seemed - and his strength and willingness to hold his head up more often was improved as well as general alertness.

It could be that he just had a good sleep ? - but that can't be the case considering our 2 out of 3 past nights 10pm sleep time for the kids

Of my own observations: when I picked Evan up from school [Conductive Education] he was still in the pool [swims twice weekly - special needs school has hydrotherapy pool on site], and I watched him happily [always happy in the pool] floating and stretching in the waters - but the surprise was in his "kicking". By kicking I mean that he actually moved both legs, one after the other, in a slow one-and-then-the-other-leg kicking fashion; whereas, he usually has difficulty moving legs at all.

Tomorrow is yet another day... to be reported.

Day 6 - an afternoon out, late back...

same dosages.

Morning: Aloe Gold [gel] in fruit puree.
BM: loose, but not as much as before

Eating orally with more enthusiasm - faster and/or with more comfort and ability to swallow [maybe he is tasting more?]

Afternoon/Evening: postponed dosages because we were out late at cousins 4th birthday celebrations. Instead of regular afternoon/evening timing I combined the Ageless Xtra and Aloe Gold [gel] with Evan's overnight feed.

Late to bed again! and on a school night...Monday tomorrow.

Day 5 - and we just go on...

Morning: 12mL Aloe Gold [gel]
BM: even looser
Mood: happy!
Tolerating overnight [and all] feeds: great! so much less laundry this week!

BM: afternoon, again, loose - and >:( smelly

Got advice that Aloe Gold should ideally be given orally if possible so that it can help the esophagus region. Can do - so mixed half of night dose [+/- 6mL] into Evan's mashed, buttery potatoes - he easily downed this portion. The other half +/-6mL I tried to give as liquid [I should know better: Evan doesn't swallow liquids well - must be thickened] and so part of this was spat out/wasted.

Swallowed easily and with enthusiasm. Great work on 4 tbsp 'taste' feed.

Dinner followed with Ageless Xtra dose 50mL diluted with water [+/- 20mL] via PEG feed [syringe].

Early to bed.

Day 4 - just doing our thang

Nothing much to report.

Morning dose of Aloe Gold [gel] 12mL
BM: loose

Afternoon: STARTED/1st dose - Ageless Xtra 1/2 bottle=50mL diluted with water [+/- 20mL]
and
Day 4 afternoon/night Aloe Gold [gel] directly following/with 6pm feed...all at once because we're off to an "Auskick" [junior australian rule football] family film night at the oval [watched 'night at the Museum 2 - too funny...I love a silly laugh].

Evan's very happy and comfortable...but popping off some smelly wind ;(

Off to peaceful sleep 10pm [now we're back from family film]...
sweet dreams to all.

woops - Day 3 ...

OK, it's Day 4, but I'll update for yesterday, quickly:

Morning Day 3: Aloe Gold [gel] 12mL
BM: loose[ugh], but this is cleansing, right?
[night before / Day 2 evening was very loose BM too]

WOOPS!! Day 3 we were supposed to start the Ageless Xtra 1/2 bottle/50mL, but I forgot [where was I?]

Will start with Ageless Xtra, Day 4 afternoon/today.

Night, Day 3: Aloe Gold [gel] 12mL

Very happy and tolerating all feeds [we're still cautious with amount given at overnight PEG feed using Kangaroo pump]. Sleeping well, and waking with joy.

Day 2 - one step into getting started with Univera

OK - Day 2, catching up...
morning dose of Aloe Gold [gel] 12 mL/half a packet, given just at the end of his overnight feed [Evan is fed through his stomach PEG by a slow drip/"kangaroo" pump that delivers formula at a slow pace overnight].

Reactions so far: well, he cleared his bowel alright...but I've been warned that Evan will have some strange movements when he starts to take these products.

During the day, while at school, I'm told that he was a bit unsettled and used his communication book [AAC, PODD book] to say that his stomach hurt/was uncomfortable. Not sure if this is to do with Univera products working, but I'll state it as I know it each day.

Night dose given with evening meal: 12 mL Aloe Gold [gel].

Sleeping well now; he usually does - better than his brother [8 yrs-old] and sister [3], who all sleep in the same room. Evan falls into restful, peaceful sleep even while the other two cause havoc. But for tonight, they are all angels in dreamworld.

Sweet dreams.

Day 1 of giving it a go...

For the first week we're:

Starting with the Aloe Gold [gel] packets - half in the morning [12-15 mL] and half at night [12-15 mL].

** SO...we have started with 12 mL in the afternoon.

In the afternoon of the 3rd day, we'll start with the Ageless Xtra - half a bottle per day [50 mL], diluted with water.

It's suggested that Essentials can be started on the 6th day, at half a bottle per day [50 mL].

We're advised that Evan will most likely have weird bowel movements as these products cleanse his body, and we'll watch how he reacts to everything as each product is introduced.

Most interesting for us will be whether or not the products will help with his reflux. Any associated improvement will be fantastic!

Although the products say that one should not use on persons under 18, I'm told that the only reason for that is that the Company cannot test on people under this age.

However, there are many testimonials of parents of children having huge shifts in their bodies, regarding nutrition, using Univera products.

We will share Evan's Univera experience here.

[These products were shipped from Canada - Univera is coming to Australia some time in 2010].

Day 1 - the Univera package arrives

This is the easiest method I can think of in order to keep track of Evan's progress using Univera products:
- Ageless Xtra
- Essentials, and
- Aloe Gold [gel]
[see planned regime of dosages, bottom]

Evan is severely spastic quadriplegic cerebral palsy, and has epilepsy as well as global development delay. This condition is a result of meningococcal septicemia infection at 7 months old, which triggered cardiac and respiratory arrest causing severe brain damage due to lack of oxygen in his system [to the brain].

He is now 5 years old, wheelchair reliant, and requires assistance for all mobility, hygeine, feeding and leisure activities. But he is a most amazing, beautifully natured, responsive, emotionally aware and loving boy.

He is currently fed via a PEG - a tube direct to his stomach - with a liquid formula that covers his dietary needs, we're told. However, he does enjoy small tastes [2-4 teaspoons] at each mealtime of pureed foods, orally.

Evan has a PEG since September 2009 after assessed by video fluoroscopy as having an 'uncoordinated swallow'; therefore, he is at risk of aspirating fluids and solids, which could cause aspiration pneumonia - possibly death due to an infection of this sort.

Many kids like Evan have reflux and dietary/digestive issues. As parents, we're xhausted by the vomitting and saddened by how it must be for Evan - the discomfort in his throat and stomach must be terrible.

We are open to try new approaches and products, and when Univera came so highly recommended I was happy to give it a go.

This is the daily update on how Evan's body reacts to the dosages of each product over the next few ? weeks? ?months?...we'll see.

Thanks to J for helping us with recommendations.