Phoenix has cerebral palsy. Not really a big shock, but now that its official it still kinda breaks my heart. He will forever has this, there is no getting better or getting worse. Therapy will help him but to what extent is up to him, his body and myself helping him. But he will forever be labeled a boy with cp. Its so hard to witness your children with a condition, how hard it is for him to do just the simplest things. I love him with all my heart and this doesn't change a thing. Where do we go from here? His neurologist was very happy with the progress in the last 5 months so much so that we only have to see her now on a once a year basis. There is nothing more that she can do and now its up to the physistrist and therapy. So in a little over two weeks Phoenix will be put out again to get his first round of Botox (cross your fingers that we all stay healthy until then) and will more then likely be casted right after that. We will be adding in a new specialist an orthopedic surgeon (for the casting and later leg surgeries). And now that we have the dx new and more options will open up for us to help him. Now is our time to really be pro-active and get all the help we can.
On another depressing note...My brother has been diagnosed with cancer. He went in for surgery yesterday to remove a growth on his neck, and the doctors found it to be a very progressive tumor. They sent it to get checked out and we will know more in two weeks. But the doctor told my mom and brother that it is very fast spreading and if he opts for chemo or radiation that its going to be intense and may only lengthen his life for a short time. They told my mom maybe a year, which just makes my heart stop. He has always been there for me, and helped us out without a question. My mom said he is taking it ok, he will be released from the hospital today and will go back in when they have the results from the growth. So if you could just keep him in your thoughts. I'm so hoping for the best, or at least more time.
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So many prayers to you and your family. I am so sorry hun!!
ReplyDeleteOh my dear God Jo Lynn! So, sorry and I can honestly say I know what you are going thru. It's as if our lives mirror eachothers. JD's Neurologist yesterday finally gave him the diagnosis of CP as well. It was no surprise as well, as a previous neuro had already told me and when he was born there was severe brain hemorrage and hydrocephilis. His new neuro did not want to give him that diagnosis as she wasn't convinced that he had it. All I can say is that no matter what label they give our lil men they are trully amazing and inspireing. There is no greater hero in my eyes and he is perfect and I'm more than honored to be his mother. In my eyes there is nothing he can not do and he is no different than any other. So, what if it takes him a bit longer to acheive something. His milestones are a calebration and that much sweeter. Our lil men have CP, but CP will never have them!! I'm terribly sorry about your brother, but please, please don't let him just have one opinion. My husband was diagnosed with Stage 4 Lung Cancer a year ago on Dec. 2nd 2010. We went to the Cleaveland clinic saw Dr. Bastos and were told with therapy 1yr to prolong live and 6 months without the therapy. We were beyond desperate and almost hopeless. He did a clinical trial which was the worst decision he could have made. He was beyond miserable and you could see the desperation in his face. Can't tell you how much it broke our hearts. We went for a second decision to Dr. Armando Armas only to discover that the therapy that was being given to him was a shot in the dark as certain tests that needed to be performed to determine which therapy would fight his cancer was never done. Today he is taking a daily medication which, in essence is chemo therepy. This medication has destroyed his tumors and he is tumor free. He leads a normal life, there are really no debilitating side effects. He goes every 3 months for CT scans and brain MRI's to make sure that all is well. Tell your brother that I'm sorry about his diagnosis and I wish himonly the best, but to please get 2 or 3 opinions before starting a therapy. There are options and there is hope. His attitude towards this diagnosis is so important as well as having the support of the family and friends. God Bless.
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