Monday, 29 June 2009

Wagging School

Every now and then something will happen that will remind you that life with a child like Noah isn't exactly normal. After 8 years, things like making up numerous medications every day, going to appointments, feeding with a tube and suctioning is the norm. Sometimes when I am out with Noah I forget that he is 'different' and wonder why everyone is looking at us as we are walking around the supermarket, and it hits me that they are looking at Noah.

Noah has been pretty sleepy the past few days (a little more than normal) and yesterday afternoon when he finally woke up he screamed for hours on end. Being unsettled is also quite normal for Noah but he just didn't seem right, so I pulled out the urine analysis sticks to see if I could find anything going on. A few years back I got sick of running to the Dr every time we thought he may have a urinary tract infection, so the Dr agreed it would be good to have some urine analysis sticks at home. That way I could confirm whether or not he had an infection before we sent off his urine to pathology, which saves everyone time and money.

Straight away the stick showed up that he had glucose in his urine - very strongly. Luckily nothing else was showing up so I didn't stress. If I find glucose and ketones at the same time the Drs want us to go straight up to hospital to get a blood sugar level done, just to see what is going on. As the night when on I kept checking and it was still up, and I was sure it would've been back to normal this morning and it would be a normal day - Noah would go to school, I would go to the gym with Harri and Kobe and we would get our usual Monday housework done.

Instead Noah had other plans - his urine still had glucose in it this morning, which I knew meant we either had to get him to the GP or up to hospital to get checked out. This is about the 5th time it has happened and every time they aren't really sure why it's happening. Instead they have put it down to a 'Noah thing' and that he probably isn't metabolising his meds at the time very well, rather than being diabetes.

Jalen and Aaron went off to school and I decided to hang out till 9am when the GP opened to talk to him about what to do, as I really didn't feel like heading up to hospital unless we really needed to. In the meantime I packed the nappy bag for a day in hospital just in case - snacks and toys for the boys, feeds and meds for Noah and colouring in pictures for Harri.

Our GP is lovely and a great Dr. He was with us the day that Noah was diagnosed with hydranencephaly, so we have a history with him and was so happy when we found out he was now a GP and switched over to him as soon as we found out. He spoke to me on the phone and said to come down and he would get his nurse to check Noah's blood sugar levels. Luckily they were fine and we avoided a trip to hospital, which I knew would end up being at least 3 days if not more. He said that it looked like he was having the same thing happen again, and to just monitor his urine over the next few days.

So instead of being at school - Noah is wagging and having a lovely time lying in the sun. Notice Kobe has also flaked it in the sun as well! It's so nice to see the sun out again today and whenever the sun is out we try to get Noah into it for at least 20 mins to get his dose of Vitamin D for the day.

It's nice to have a lazy day at home every now and then.

I'm just glad that it's a lazy day at home, and not in the hospital.

I told Noah he couldn't laze around all day, and put him into his 'little room' for a while. Hopefully tomorrow everything will be back to 'normal' - as normal as it can be with a child like Noah.


  1. Come on mum he just wanted a day off school!! wouldn't you!! glad it cleared up!

  2. Happy to hear you didn't end up in the hospital. Noah you have the coolest little room.

  3. So what is the reason for the elevated blood sugars?
    He has been very tired lately, and doesn't seem to be his usual self, you know what I mean.
    May be he just wants to be home with you and Kobe.
    Love Mum.

  4. They aren't really sure - this is the 5th time its happened - they are putting it down to his metabolism and all the meds.

  5. Lazy Noah!

    Glad you're not in the hospital.

    If he's home through the week and you want to switch hours around to be earlier, just call or text me. I'm free all day, all week.


  6. Yes my kids asked all sorts of questions about Noah on sunday. Azhie is convinced he was just sick and needed to "chuck" and he'd be fine! So cute. I love watching Noah, he is so special and i can feel that when i am around him.

  7. Oh and i'll never complain about loading all my lot in the car after watching you guys on sunday! You both deserve a medal!

  8. lol - thanks Elissa. Funny as that's just another thing that is now 'normal' to us. I feel lucky we have the ramps - before that we had to lift Noah out of his wheelchair and into a car seat every time.
    One day I'm hoping some lonely millionaire will leave us a heap of money when they die and we will have a lovely brand new van with a lift so I don't have to push him up the ramps anymore :D I will keep dreaming!

  9. its all that race car cake you fed him!!!!! Hope he is back to normal soon. I need a nap in the sun!

  10. It's nice to wag every one in a while. Cathy worked us hard today. Ask Sarah what got a workout the most....!!!


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