We had our next lot of app. on Monday and what a big day. First was the neurophcologist she is lovely. Denver had to do an IQ test and some other tests to see where he is at at the moment so we can keep track of his progress over time. It is so hard to sit there and watch you kid do all these tests and answer all these questions and I had to be perfectly still, it is so hard as a parent not to help. The test was really hard work for Deni and we had breaks every 20-30 minutes where we could go for a walk have a drink unwind before the next session. Deni got tired so it was hard to keep him going but he did it. The best thing was we got the results nearlly straight away which is so much better than having to wait for them. Deni has above average IQ for his age and his speech is better than normal for his age. So that was a relief and lovely to hear. Denver is displaying signs of brain pressure with the way he acts, gets restless, has trouble finding the information in his brain, trouble finding the right word, not being able to scan pictures and not being able to concentrate. There was a long list but thats enough. So her findings match the other dr's findings that there is pressure on the brain affecting his every day life. She also spoke about how most children do get better after the surgery once there is no more pressure on their brain with the problems that she found in Deni. So that was very reassuring to hear.
Next was the eye test. Deni did very well on his test for vision he has perfect sight. Yeh!!!!!!
They then put drops in his eyes which after about ten minutes allow them to see the nerves at the back of the eye. They were bloody alwful. They stung deni's eyes and then they make your vision go all blurry so you can't see any thing and cause deni was so tired it was hard to take. She took a long time looking in his eyes and I just thought it was because deni started to fall asleep. But no. She could see that the nerves were elevated which means there is pressure on the brain so she said that was fine and what they were expecting and matches what all the other dr's thought, but the thing that was worring her was that on one eye Denver had some lumps/bumps/growths on one of his nerves which shouldn't be there. She was worried and couldn't figure out what they were. She then gave us a referal to get an eye ultrasound as soon as possible today if we could and then go back to see her. So matt and I walk out going what just happened? What??? We started double checking with each other to make sure we had heard the right thing. Yep we had. Ultrasound could not fit us in till the following monday so we have to wait a week, while talking to the receptionst it dawns on me how do they do an eye ultrasound? So I am told they simply put gel on the eye ball and then the ultrasound probe just like any other ultrasound. I am floored, he will be awake for this. I hate eye drops let alone gel and then a probe. How the hell are we going to get him to do that? I don't know if I could do it let alone a 4yr old. The thought just freaks me out. How do I even begin to explain that to Denver? What???
Matt and I are quiet on the way back to the holiday house where we are staying with my family. I don't think we can believe that we have to do more tests and they have now found some thing else to worry about. Why can't we just got to our app. and be told yep thats fine or thats excatly what we expected, why are there more things to be worried about?
We don't talk to any one about it till the next day and I find myself being as I was before strangly sterile, unattached, cool, calm and collected. It's such an opposite to what I feel on the inside. It is a curse and a blessing to be surronded by people some times you long for company but most of the time I want to be alone and thats pretty hard when you are living with 12 other people. I go about telling people that need to know. I am so calm. I hold it together. I find myself so weird at times like this.
I am yet to find my safe person who I can tell my thoughts to about this and be completly honest. I haven't found that person I can fully relax with yet. I feel very alone in the way I feel at times. I often feel like we have been given a ticking bomb. I need to cry about this but I can't. I don't know why I can't. I feel like people expext me to just tell them the latest news/tests and then keep going like nothing as happened. I do that on the outside but on the inside it gets dark and I don't know what to do. Where do I go to fall apart? Where do I go where it will be ok to fall apart and no one will expect me to hold it together? Am i alone in this???????????
Next week is going to be another big week with the eye ultrasound, the results on Monday and then the neuro surgen on Thursday. I am praying and hoping for no more suprises and to find my person.
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