Since he features on my blog header, I thought I would kick off with the story of Soxy and his feeding button.

Those of us with special needs kids quickly get used to all sorts of equipment and medical terms we had never heard of before our child entered our worlds. And really, our children are often even more baffled and confused at first. Or if they have always had a button, a trachy, or hearing aids, there comes a time when they notice that none of their toys do. Over the years, I have made several “Like Me” toys, and over time, I would like to share them, and maybe others’ inventions too.

Samara was born at 31 weeks, and came home 11 weeks later with an NG tube. We battled our way through the next 6 months with each feed consisting of an attempt at breastfeeding, followed by thickened EBM in a Habermann bottle, (because it was thickened it was a real guessing game, as we had to discard what she didn’t drink as it wouldn’t fit down the tube), and then she would finish off with the rest of her feed through the tube. Gradually, we got to the point where she was completely oral by 8 months.

Fast forward a few years, and we were running into a repeating problem. Every time she got a cold, Samara would stop eating and drinking. She was on a CPAP at night (and yes, her doll had one too. I will post that on another date), and the hospital had a policy that you had to go to ICU or High Dependency if you were on any sort of ventilation. So every time she got a tiny sniffle, there we were, in ICU so our daughter could get water through a drip! Talk about overkill! Basically, she was trying to protect her airways from aspiration, which led to multiple pneumonias. She was eventually diagnosed with bronchiectasis, which is when scar tissue forms on the lungs from repeated pneumonias. This, in turn, causes further pneumonias. A vicious cycle we needed to break. Between the ages of 4 and 6, her weight yo-yoed between 18 and 20kg. Every time she gained a kilo or two, she would get sick and lose it again. So, it was decided to fit her with a g-tube.

Because Samara likes to keep us on our toes, we had a lot of problems with her button at first. We had opted for a surgically implanted Bard button, because having a PEG, which is usually placed for the first 12 weeks while the Stoma heals, would have been to big a temptation for Samara, as it has a tube that would be so much fun to play with and pull on! But, 2 weeks later, at a school trip to a Koala sanctuary, the whole thing, stitches and all fell out! It was switched for a MicKey, which promptly fell out as well! they filled the balloon to it’s maximum 10ml, and sent us home, praying for the best! I made some tube belts to help keep everything in place (I will add instructions for this in a future post), but two weeks later it dislodged, but did not come completely out. This led to an infection and emergency surgery! The good news is, after about 6 months, things settled down, and it has only come out since when the balloon has died. Like the time it died on our last night in New Zealand at a restaurant! Oh, the joys of living an extra special life!

Anyway, now that the tale is out of the way, onto the part you have been waiting for.

Before her surgery, we were sent this cute teddy bear, Buttons (Hey, I used up all my creative names on the children!) from Tubie Friends. They send these toys, made from Build-A-Bear teddies, out to children around the world, to give them a friend just like them. We practiced feeding him together in the few days before she had her surgery. Then, last week, Soxy arrived in the mail in a parcel from Sara in New Zealand.

It was love at first sight for Samara, and since I had some Sock Monkey fabric, I decided to make her some button pads to match her new friend. But, of course, if she was REALLY going to match him, he would need his own button. We had a couple of unusable ones I had saved for just this purpose, and as soon as she went to bed, I went to work doing my first gastronomy surgery! The next morning when she woke up, she was so excited. Her grin totally made my day! She kept pointing to his button, then pulled up her pyjama top, and showed Soxy her button, and was telling him all about it! She then showed him his portrait on my iPhone! He is set to become an absolute favourite, and even went and had a sleep study with Samara last week. He still has the head gear to prove it!

The good thing about giving a sock monkey a g-tube is that you don’t have to cut into the fabric of his body.  Simply poke a hole with a pencil and wriggle it around until the threads move aside enough to fit the tube through! Sadly, I didn’t think to take step-by-step photos, so, just now, I gave one of her dolls a button, so I could share the steps with you.

STEP BY STEP INSTRUCTIONS

Find the toy you want to operate on. For me, this took longer than the surgery! Samara has a habit of hiding her toys in the strangest places, and I had to check all of them!

Gather your supplies. You will need a thin needle (you will be stitching through the plastic tube, and do not want the resulting holes to be too big), thread in a colour that is not too different to the toy, a pair of scissors, and a g-tube button (you could use an expired one, or even a used one, as you will be cutting off the gross bit). If you have some fray-stop, or clear nail polish, this would also be a good idea. I didn’t have either, but I plan on getting some to be on the safe side.Cut the tube leaving around 5mm at the top. This is what you will stitch through. Discard the balloon end of the tube.Prep the patient for surgery. Normally this would have meant giving her a good wash, but I was too impatient!Make a small an incision as possible to fit the tube through. On Soxy, I just poked a pencil through, and wriggled it around to move the threads aside. But this time, I made a small cut with scissors. this is when you would add some Fray Stop or clear nail polish if you have it to prevent fraying. I briefly considered hot melt glue, but that would leave a granulation ring, and we have enough issues with granulation without inflicting it on the poor doll!Thread the needle, and tie a knot in the end of both threads. You will be stitching with the threads doubled for strength. as you make your first stitch, loop the needle between the threads to stop the knot popping through the loose weave of the fabric.Stitch straight through the tube, catching the fabric on both sides. Work your way around the tube, passing through it around 6-8 times. A thimble comes in handy for getting the needle through, although it isn’t too hard as the plastic is very soft. Don’t do too many stitches, as you don’t want to split the plastic.Once you have stitched all the way around, finish with a triple knot, and thread the loose end of the thread through the body a bit before cutting off, so it doesn’t come undone with rough play.Give the button a couple of gentle tugs to ensure it is well fastened, then make sure any Fray Stop or nail polish is dry before handing the patient back to her owner.Once you have seen how quick and easy it is to do, you may find your collection begins to grow!