Tuesday, August 25, 2009

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.

Friday, August 14, 2009

News, from lots of different people.

Hi everyone,

Lots has happened in this last week, so we have an exciting installment of this weeks episode of the
Drostens' real life soap series. In this episode, the drama about the funding gets resolved, a special visitor, a series of hospital visits and Noah has moved!

First the funding: We finally got what we need (and are entitled to). Hooray for Christa, our assisted breathing team liaison nurse from the hospital, who finally got through to the right people! We will bake a massive cake for you the next time you visit Christa. :)
No letter from the zorgkantor to say they are sorry, but we did get a letter requesting an in depth audit of how we spent our first 6 months budget! Oh well, I guess you can't expect them to behave in a nice way all of a sudden. So a few more hours of paperwork before we're finished.

We're so lucky that we could rehire most of the nurses we had to cancel. It was just a lot of calling and emailing to fill in all the shifts again, but as you all know, we live for administration! Plus our holiday can also go ahead. GretaBonteKoe here we come! Let's hope the weather comes with us. :)

Over the last few weeks Noah has had even more trouble than usual with his tummy and so after a talk with the Sophia we visited the local hospital, the Juliana. As hospital visits go, this was so much more relaxed. We were able to take a nice walk with Noah in the new pushchair, so he was a lot more relaxed on arrival. After some initial investigation, and conferencing with Sophia, it was decided to take a film of Noah's intestines using barium porridge. Juliana and Sophia work really well together and this helps us enormously.
The Juliana is a lot less busier than the Sophia, which is just as well as we were 20 mins late - we really have to get better at getting out of the house on time! It was also lucky because after we got home, we were immediately called back into the hospital for a second check up, because they wanted to follow the barium deeper into Noah's digestive system.
The initial result we've recieved of this investigation is that Noah's stomach has turned, more or less, upside down. We are not sure what this means, but you can imagine that this makes it very difficult to swallow food, as it has to move upwards into his stomach. Also his stomach does not empty out easily as the exit to the intestines is at the top. So he is never hungry, another point that makes him less interested in eating himself.
All this information has been passed on to the Sophia Hospital in Rotterdam, and they will decide what treatment is needed. Most likely an operation to turn his stomach back and then anchor it somehow. This will be combined with surgery to drop at least one of his testicles. We'll find out more next week when the surgeon at the Sophia has had some time to view the results of the film from the Juliana. To be continued ...

A friend from Turkey joined us last weekend. Ozgur is touring Europe and happily was in the neighbourhood and could drop by for an afternoon. The weather was perfect for a trip to the beach. Lilo was so happy and kept the boys busy throwing the ball.


Frank showed Noah how to eat a cookie with maximum relish and enjoyment.

Noah enjoyed a sit in the sand taking in the view.

All too soon the day was over but we had a great time and were so glad to have the opportunity to meet Ozgur face to face. Enjoy the rest of your trip Ozgur and thanks for the fabulous wine! :)

Oma and Opa also visited this week and enjoyed putting Noah in his bath. However they did need extra protection against the swamp rat!!

Time does not stand still and teeth do not stop growing!! Noah now has 2 more molars at the top. All 4 of his molars are only half way through so still a while to go till it's over. Let's hope Noah gets some rest after this set.

We saved the biggest news for last - Noah has his own room now! Since he is now no longer a baby but a huge 13 month old toddler, we guessed he was ready. Although we weren't to sure if we were!

With all the uncertainty of the budget and therefore lack of nursing, we thought this would allow at least one of us a decent night sleep. Noah needs to be tended to a few times in the night which is pretty noisy plus you need some light. So far it seems to be working very well, all though we haven't arranged all the furniture and sorted out where all his medical supplies need to go yet. We've programmed his alarms with a tighter range so that we can react in good time to any incident. He's got a baby phone in his room so we can hear the alarms more clearly and a camera to visually check on him. Never mind big brother, big mummy is watching you!!
Noah seems to sleep deeper and although it's taken a bit of getting used to, gradually we're learning to sleep a bit more easily.


Enjoy the pictures, and more news soon.



Thijs & Louise




Thursday, August 6, 2009

Swampie the swamp rat or Riverdance?!

Yesterday the bath was delivered. So today we had to try out the bath. Noah was so happy. Since we flooded the downstairs neighbour last week, (don't ask!), I thought that we should just let Noah 'go for it!' as the neighbours get a new ceiling off the insurance anyway, let's make sure it's really wet! :) Here you can see Swampie the swamp rat 'go for it'.



However, there are a few high kicks in here that Michael Flatterly would be proud of. Maybe we have a future river dancer on our hands! I'll let you all decide.




xxx Thijs, Louise & Noah

Tuesday, August 4, 2009

Say a little prayer ...

Not to worry Noah is doing great.
We've enjoyed a really lovely family weekend with him. It's great having our pushchair now as it allows us to be more mobile. On Saturday we took Noah for a walk around the neighbourhood. We visited the post office, the butcher, had a stroll through some shops, everyone admired Noah - of course! :) We even sat and had a coffee and lunch in a cafe while Noah had some milk. It was great sitting outside with him eating lunch, it felt so normal at last.

On Sunday we all went for our first outing with the bakfiets. Noah loved it, he sat like a king on his throne surveying his domain. He was so relaxed, taking all the sights and sounds in. We cycled to Scheiveningen to visit Patricia and Theo. The cycling was great but we weren't so good with the getting organised, so apologies again Patricia and Theo for our late arrival. Again, a lovely afternoon spent relaxing with friends. I like this being a normal family :)



On Monday Lilo went for her walk with Marijke for the first time in a while. As usual she burst through the door with tail wagging. Marijke followed just as enthusiastically but with a little less energy! ;) She hadn't seen Noah for a while so it was great to hear from someone else that they could see how well he was doing.


We were a little disappointed on Monday evening to be called and told that we've been denied an increase in Noah's budget. The Zorgkantoor will not budge. No reason, just no. So we've had to cancel all nursing care from the end of August, which will leave us a deficit at the end of the year but we'll sort that out somehow. The only option open to us at this moment is to put Noah in care while Thijs and I go back to full time work and that we will never do. No one can understand how this can happen, as our case should be clear cut. We have plenty of medical data backing up our claim, but it seems Den Haag is a law unto itself. The sad part is that should we live in another part of the country, we wouldn't have experienced any of this. People are still appealing on our behalf. We're writing letter trying to get someone to take an interest in our case, but for now we are against the wall. So that's why I ask you, please pray for us because this is becoming much too big for us now and we really need all the help we can get.

Thanks all

xx Louise, Thijs & Noah