We went to the neurologist today. She spent a good 45 minutes in the room with us. It took everything in me not to burst into tears when I asked her what I already know. I asked her after she finished Jacob's exam, "When do you officially diagnoses him with cerebral palsy." She told me that she could now because she had all his test results in. She babbled off this long diagnoses in her accent. After 3 times asking her, I asked her to just write it done. So this is it: Spastic quadriplegic cerebral palsy with superimposed right hemiplegia. So to put this in non-medical terms here goes: Spastic mean he has decreased motor control (he can not control what he is doing) quadriplegic meaning it affects both legs and arms. cerebral palsy meaning his brain damage contributing to his disability and his stiff muscles right hemiplegia means he has weakness on his right side. I used to think his left side was the more affected side he seemed so much tighter on that side, but now it makes sense. that why he has to have his head to the left when he eats because his muscles are weaker on the right which was causing his aspiration. She stayed optimistic about his outcome. I got the answer I keep getting. We won't really know until he is "school age" regarding his intellect, IQ, etc. She told me I am doing the right thing with his muscles. She said usually babies with quadriplegic CP usually have less movement than he does and already have contractures. Jacob does NOT have contractures and he moves his arms and legs with a pretty good range of motion. He is horribly tight esp on his left leg. I am concerned he is getting the beginning of a contracture but I constantly stretch him. This is the information I pulled of the internet about quad CP:
Spastic quadriplegia (all four limbs affected equally). People with spastic quadriplegia are the least likely to be able to walk, or if they can, to want to walk, because their muscles are too tight and it is too much effort to do so. Some children with quadriplegia also have hemiparetic tremors, an uncontrollable shaking that affects the limbs on one side of the body and impairs normal movement.
Jacob has the tremors in his left leg, it does not happen often and only lasts a few seconds. I will not give up on Jacob being able to walk, sit, etc. I worry about his physical development, but I worry most about his ability to communicate and see. As I wrote in my last post the eye doctor does not think he can see well. I can handle him being in a wheelchair if this God's will for him, I do hurt thinking about him not seeing and not being able to communicate as well. I do know he is happy and I do everything I can to make his life the best it can be for him. It is just really hard for someone to actually tell you what you already know.
I do know that God does have a plan and I am slowly understanding parts of his plan. For example I do believe Logan's life was meaningful and I know God knew I would not be able to give Jacob all the attention he needs and still be able to take care of Ava and Andrew if I was having to worry about Logan's sick lungs and his development as well. Not to mention all the extra doctor appointments, hospitalizations, and special equipment he would have needed. Why God chose to take Logan with a normal brain and give me Jacob to care for I do not know. I do not wish it was different. I wish I had 4 healthy children, but I continue to follow God and believe his plan is perfect even though I sit her and think why is this happening to my family? Why does Jacob have to live his life this way? Why did Logan have to have chronic lungs while his brothers did not? Keeping the faith. Trying no to question God and go with the flow even though I have had a really hard time with this in the last few months. God works miracles everyday. All 3 boys are my miracles. All I want is for Jacob to be able to tell his and his brother's story himself one day walking or not.
Andrew also seen the neurologist today. We went over his MRI results. She said all his brain matter is normal and the only things that continues to show is that he has enlarge ventricle. She said this could have been caused from a tiny brain bleed from his prematurity, but since it did not affect his brain tissue there is nothing to worry about. He was happy with his developement and told me she did not need to see him for a year. Jacob goes back in 5 months. Only change for him is an increase in his phenobarb for his weight. We will continue to put one foot in front of the other. We will continue therapy and start new therapy for his eyes soon.
My mind is exausted. Going to to feed and bath babies and go to bed before 1am hopefully.