Tooth number 4 arrives.

Finally! At last the 4th tooth has made an appearance. It's been another long week of interrupted nights, unending poo pampers and suctioning until we ran out of suction tubes; Thank you Emnamet for making an emergency delivery! On Saturday evening we finally had our first normal (as in non-diarrhea poo) pamper. So of course we need to make a blog entry to note this special occasion. :) It was a short reprieve though, we're back to sticky poo pampers today. Ah well, it was good while it lasted! Noah is looking like a baby crocodile now, it's so cute!

Yes, my life is reduced to the quality of Noah's pampers. I am going stir crazy. I have only managed to get out of the house about 5 times since Noah has been home, and most of those were for medical appointments. The main reason is that Noah is not used to outside yet, and we had one incident where Noah went 'absent' and several near misses when we've taken him out together, because the sun and the wind on his face frighten him so much. So I don't feel comfortable being the only 'trained' person taking him out. Because of Noah teething, it's difficult to get him out of the house on the weekends because sometimes he's just not happy, plus the fact that the weekend is the only time we have to do all the jobs that require the two of us present.

I don't really want to complain, I hate being negative but I also want to be honest on the blog otherwise what's the point?! Friday was the straw that broke this donkey's back. As I mentioned in previous entries, Thijs has been busy trying to sort out our CIZ / PGB administration. It's been a complete nightmare and it is so frustrating that this was only started 3 weeks before Noah was released from the hospital, instead of in enough time so that we could come home with the adequate amount of support in place to help us. We also feel that as Noah's indication report was compiled without our involvement, it's been a lot harder to try and add information. In conclusion a decision of a lower level of support was issued by the CIZ than was indicated as required by the doctors.
We have been trying to appeal against this decision and to get it adjusted. Thijs has been sent back and forth like a tennis ball between departments and finally was told by the CIZ to write a letter of appeal, including a letter from a doctor and a copy of his medical file. So far this has all taken 8 weeks to get to this point.
On Friday we received the reply to our appeal from the CIZ stating that their decision issued to us on the 11th of March was only an 'advice' and therefore we cannot appeal against it. I tried to handle this letter in place of Thijs, as it's a critical and busy time for him at work and so he's been doing overtime.
The result of the phone call was the following:
The fact that their 'advice' is used by another department as the basis to calculate the money we receive is nothing to do with them and we have to take it up with the other department. (We were previously told by the other department that they cannot help us because they only calculate the amount and do not issue the decision and so we have to take it up with the CIZ). I was so upset that something so crucial to us is being treated in such a stupid and beurocratic, unhelpful way that my spoken Dutch was not very good, I was advised to discuss the letter with my husband as he could explain it to me, as I obviously didn't understand. I thanked her for her time and said that I understood perfectly, I just do not agree with their findings.
I feel like throwing up because my insides are so knotted up with frustration. In order to hire help we will have to use our savings until this catch 22 situation is resolved and I'm not that hopefull that it will be resolved anytime soon. We are both so tired, this took the wind out of our sails and we feel close to giving up. We of course can't give up, because that means putting Noah back in hospital and we won't do that until we have absolutly no recourse. This is where the CIZ wins - and we feel like crying.
Well now that I've shared that moment of self pity - we have come up with a stratergy of fighting this. We're not sure if it will work but we can only try. I've asked for some legal advise to see if conducting business this way is lawful. Thijs will contact the CIZ again on Monday to seek someone with an ounce of knowledge and see why this ruling has been given. If this comes to no good, we will contact an Ombudsman to see if we can get some assistance and also the health insurance to see if they can have any influence. After all, they will have to foot the bill if Noah is returned to hospital. So for this brief moment, we are down but not out.

Luckily, in amongs all these "going on's" there is Noah. He is such a little ray of sunshine, you cannot believe how much he can melt your heart with one of his smiles. I love watching him explore his world. Inge suggested introducing a box filled with beans or macaroni, this helps Noah because he doesn't have the frustration of trying to pick up something or hold on to anything, he can enjoy running his hands and feeling the different sensations. It works a treat! He loves swooshing his hands through the beans and of course flicking them on the floor. His face is pure joy and he laughs when the beans fly out of the box, the little rascal! We're seeing that Noah is a lot more aware of his surroundings and enjoys making noise with his toys and picking up things that are close by. He had me laughing this morning because he was pulling on his feeding tube like it was a bell rope, almost as if he were demanding his breakfast!

So not to worry, it's not all doom and gloom at the Drosten household, it's just a little hiccup. As usual, the photo's will be posted a bit later.