Thursday, 27 August 2009

Back to 'Normal'

Lately I've been having a lot of people ask me how Noah's leg is out of the cast and I realised I haven't been keeping up to date on my blog with how Noah's leg has been. I actually find I don't often write a lot about Noah and it's not because I don't want anyone to know what is going on, but it's because I don't want people to feel sorry for him or us, and I also don't want people to think we are looking for sympathy or praise as we aren't. We love Noah, but there are a lot of things that we wish could be different.

I guess no one can really know what it's like to have a child like Noah unless you have one yourself, and although I don't want sympathy I want people to be aware of what it is like as I think it can only do good for people to understand more about Noah and the condition that he has. I guess that means I should post more about him and the things that he and we have to deal with every day of his life - that was the main reason why I started this blog in the first place - so we could record all the daily things that we do - the good and the bad.

Anyway - back to the leg! The first two weeks were not fun at all. Noah was in a lot of pain and having to have morphine regularly to keep him settled. We could hardly move him at all without him crying in pain and the worst thing was not being able to pick him up to comfort him as it was just too painful for him. We had to give him sponge baths for two weeks which was a pain, but we had done before when he had some serial casting done after having botox in his calf muscles.

After having the cast on for two weeks we went to the fracture clinic and I told the Dr about how much pain Noah was still in and how much morphine I was having to give him to keep him comfortable. I really didn't think the bone was healing very well at all. He said he needed to get the cast off to check that it wasn't a pressure sore from the cast so they took it off. In the meantime Noah is in agony as they are moving his leg around - even after I dosed him up with morphine before we went in there.

After the cast was off we saw that he did have a pretty big pressure sore on his heal, so the Dr straight away assumes that is where the pain is coming from. I disagreed with him and said that I understand that would've been causing pain, but I still felt he was getting a lot of pain from his leg and wasn't feeling comfortable about how things were going. The Dr then grabs his leg where the fracture was (!) and starts moving his leg around and says 'it's not moving at all - it's healing really well - if he was getting pain from his leg he would be screaming right now!'. I looked at Noah who was in agony the whole time - pulling faces and drawing his arms up into his chest. I was so upset and told the Dr that I know my son and he isn't a 'normal' child and doesn't show pain like a 'normal' child does and that he was showing me he was in pain. The Dr then disagreed with me again and said ' we'll put a splint on it and then bring him back in two weeks'.

I was really upset and asked him if he could prove to me that it was healing properly by doing an x-ray and his reply was 'no, I can't do that'. I asked him why and he replied 'I work for the government' (meaning that he was trying to save them money). He then left me with the guy to put his splint on. The guy could tell I was obviously upset and said to me that if he were me he would believe the Dr as he was a very good Dr (he is actually the head orthopaedic Dr at the hospital!). I told him he may be a good Dr but he needed to see that Noah was in pain and not treat him like he was a normal child as he isn't and that he surely shouldn't be in so much pain two weeks after it was fractured.

When they took the cast off I could see how swollen and crooked his leg was. I asked them if that was normal and they said it was as the only way it would be straight was if they operated and they didn't want to put Noah through an operation to have his leg straightened if he didn't need to have a straight leg (because he doesn't walk).

We took him home with the splint on and were told we could take it on and off for bathing and to give his leg a break from it now and then. Everytime we would take it off he would be in a lot of pain, so I rang our GP to explain how upset I was with the treatment we had at the hospital. He arranged for Noah to have an x-ray done to confirm that it was healing and thank goodness it was. He said that because of Noah's condition it could be easy to break it again (oh great!) and we just had to be extra careful as it was going to take some time before it was completely healed.

Two weeks after the splint was put on we went back to the fracture clinic. The same Dr saw us and said that Noah's leg was now fine and that he no longer had to wear the splint. I asked him why he was still in pain and he said it was all related to the muscle and we should start 'gentle physio'. Check out Noah's left leg - it is so swollen now and you can even see how crooked it is in this pic.

After having 4 weeks off school, Noah finally went back to school last week. The physio was not happy at all with how the hospital dealt with it and said they should've operated right from the start. She has been fantastic and actually rang the hospital and spoke to the Dr we dealt with and really told him off! She said at first he got his back up and then after a while he was apologetic and said he didn't realise how much it was going to affect Noah to have a crooked bone. She is realy worried about how it's going to affect the muscle around the bone as his muscles are tight already, so we will now have to look at doing a lot more physio to compensate for it.

Last week we had a bone density scan done of Noah's whole body and his paediatrician rang me a couple of days ago to say that the results weren't great, but they also weren't terrible so we now need to decide what we do about it. Noah does have osteoperosis which is common in kids who have Cerebral Palsy and who are also on a lot of medications. Next week we see a specialist who will help us decide whether Noah should have biophosphonate therapy which are infusions of a medication which can help to increase bone density.

On Noah's second day back at school I got a phone call to say that Noah had a really long seizure compared to normal - over a minute and a half. They are usually only about 30-40 seconds long so they were quite worried as he seemed to be taking a long time to recover afterwards. I went up to check on him and he was back to normal, but pretty sleepy.

The worst thing about the broken bone is that Noah's health has taken a step back. He had been doing really well after having a lot of treatments from our friend Marlo who is a bioresinance therapist. His seizures had settled right down and before we had seen her he was neauseous all the time. After a few months of treatments that had all settled down and he even had some days that were seizure free and he no longer wanted to vomit all the time. He is having a lot of seizures every day again and wanting to vomit all the time. I talked about it with our chiropractor and also Marlo and they think it is stress related and it will take a while to get back to where it was.

Despite the seizures and him wanting to vomit a lot again, he actually has had a good winter despite his broken leg with no signs of colds, flu or chest infections. Things are finally getting 'back to normal' with him being back at school full time. Today was his first day back at Punchbowl in over 5 weeks. It was nice seeing the three boys all in their Punchbowl tops this morning.

The kids were so excited to see Noah this morning - all running up to him and yelling 'Noah!'. It was so cute to watch. When I left he had a couple of girls around him rubbing his hands and head. It's nice for him to be back at school with his friends and also nice for me as I'm also feeling 'normal' again.

Being stuck at home for a month was tough. I am the type of person that needs to get out regularly or I start to go crazy. I especially felt yuck as I wasn't exercising like I normally was as I was missing my normal gym classes in the morning. I find just getting to the gym every day helps me to cope with everything that we have to deal with. I did get to go every few days as Mum, Di and also Bonnie would stay with Noah so I could have a break, but it's not the same as being in your normal routine every day. Hopefully now things will stay 'normal' - at least for a little while!


  1. great update on Noah Lisa.... so glad that things are back to "normal" for you... lets keep our fingers crossed they stay that way...and besides that i was missing my Noah lipstick kissing...

  2. phew, what a post! Glad everything is heading in the right direction for you guys. I bet Noah is pleased to be out of the house - and the cast- and back at school.

  3. That was a nice post to read Lisa.

  4. Four weeks house-bound. I'm impressed. Four days and i'm climbing the walls.

  5. I really liked that post Lisa. A glimpse of normal life with Noah helps me understand a little of 'a day' in your shoes, it teaches me in more ways than one and more than anything, inspires me to be a better person and follow your family's example.

  6. Hey, Lisa....
    I told you I was C's nurse for 3 night...C had round the clock nursing ...I'm happy for you to say what's going on and all the happiness and frustration that comes with Noah...Noah is a fantastic boy..His spirit is perfect....He teaches us service and compassion....and yes.. you fight for him...K,my other little boy I worked for, did absolutely nothing the "normal" way...and what is "normal" anyway??lol...
    please inform your DR..that ,tho I respect and honour his knowledge and instinct...when it comes to families such as yourselves.. to TRUST you...and that I, as a nurse will come bop him one for his "I am right" attitude ....and lack of tenderness....and ..I could go on...I'm glad you were given breaks from Bonnie and co.... again.. wish I could be closer to help out aswell... do not hesitate to use your blog as a punch bag!!
    Take care...God is with you...

  7. Wow! I'm constantly amazed by how much you do EVERY day just to get the whole family through the day! I am also amazed by how well the school do - they seem fantastic. We all hope Noah will settle back into his old routine very soon.

    LOVE that last photo!

  8. what a champ!
    glad to hear his leg is healing - even if it is ever so s..l..o..w..l..y

  9. Its mind boggling what some people get done in a normal day. Its nice to hear about Noah and how hes doing your a real inspiration Lisa. Im glad you stood your ground with that Dr too! Some of them just dont understand that even though they are the ones with the degree its the mum who still knows best.

  10. makes me think of the little things i take for granted. you do a marvelous job. so glad noah is back at school and that things are feeling a little more normal again.

  11. It was so nice to read that =) Noah is so great!..
    I don't pity you, i envy you. You have such a beautiful family, and are so blessed to be able to spend so much time with them!
    I hope one day i can be as good of a mother as you, you really inspire me =) xxx

  12. Its really sad & furstrating when DRs who don't live with the children and aren't their Mum behave like that. Shelly & I are always talking about how she gets the same reaction from different specialists. The problem is they only want the problem to be fixed and don't really worry about the well being of the children.

    Im glad Noah has finally got the cast off it must be strange having such a big heavy thing on your leg!


We are so grateful for everyone's love and support, and appreciate your comments xoxo

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