Hospital Update

Hi Readers,

We had a lot of hospital visits last week, trying to find out what was troubling Noah. On top of the discomfort of his tummy, Noah has been pretty upset with all of the procedures and blood work that needed to be taken. In turn we've been working hard and we were just so tired, so sorry for the lack of updates. There are no final results but we have an initial diagnosis of a rotated stomach in combination with his colon being very distended.

They suspect a motoric problem more than additional deformity, but they are not yet certain. Normally the intestines contract in a lovely wave movement, pushing the food along rhythmically. Noah may not have this rhythm perfected as yet.
As you know, Noah still takes air in through his mouth and nose. This cannot go to his lungs and so can only go through his digestive system. Because all of his tummy muscles are so distended, it's very difficult for Noah to get rid of gas, and we try to assist him by leaving his feeding tube open, so that the gas can easily escape.

This can be a hit and miss affair, sometimes it works sometimes it doesn't. Sometimes Noah is vomiting with too much wind and other times he's ok. Sometimes his food flows in, other times it can take up to 2 and a half hours for one feed. We thankfully have some understanding of these symptoms when we see his stomach is rotated, you can imagine a twisted hose pipe to visualise what happens when you try to put milk down the pipe.

The open feeding tube only helps with gas that's in his stomach. When it passes further into his system we need to use another method. Anyone who's ever suffered trapped wind will understand how painful it can be. Just like a baby with colic, we give him tummy massages for the cramps and if all else fails we insert a rectum canule to release the trapped wind. What the x-ray photo showed is that Noah's colon is very very distended with air. The least intrusive measure is to regularly insert a rectum canule to relieve the air and see if that helps to bring the colon back down to a normal size. More test need to be done in a few weeks, including a biopsy of the colon before we know more.

We're relieved that the doctors found a reason for all of Noah's problems, and even better if it's treatable. It's just really horrible watching your kid in pain, so we really hope that this will get sorted out sooner rather than later because it's taken so very long to get this far.

Further to this medical investigation into the mechanics of Noah's digestive system, we've also been busy with blood work to see how his system is processing his food. A dietitian is looking see if Noah has any allergies or whether he's deficient of any vitamins. Noah continues to grow in length and weight, so we don't foresee any problems but due to Noah's age he would normally move onto a different formula food. The formula 3 food takes into account that a child of 12 months has regular meals, but of course Noah doesn't yet eat. We are in consultation with the dietitian to see what's the best next step for Noah with regards to which food he should have. It's quite exciting really because this is yet another milestone in Noah's development.

With regards to Noah's development, we have to say - and not just because we're the proud parents!! - but he's doing amazingly well. He sits unassisted with really good balance. He can reach forward and come back again, which shows how well his stomach muscles are improving. We've found him frequently lying on his stomach in the morning, so he's also mastering the turn.
His arms are getting stronger as he's able to lift himself up into a sort of push-up position. Thijs has been doubling as a soft cushion for Noah, working to support him when he's trying to crawl. Noah's tummy is just too sensitive to lie on the floor, both love doing this and there's lot's of smiles all around.
We've been busy building up how long Noah can be free of his corset and this is also going very well. This means that his diaphragm can support his breathing a bit better, and he is using his core muscles a lot more to support him when he's sitting.
Noah's fingers are also getting more dexterous and we're working on his releasing of objects and fine motor control. This will come more into focus when he starts using more sign language gestures. We've also been researching a lot of sign language methods. We're very curious about the Makaton system, which is sign language assisted by symbols. This would mean that not everyone has to learn sign language in order for Noah to be able to communicate with them. A huge plus point!
This takes a lot of energy as you can imagine, from both parents and child! It's great though because Noah gets less frustrated and that can only be a good thing.

We are all ready for our holiday at the GretaBonteKoe - long live summer holidays!

xx Thijs, Louise & Noah.