We're Beginning to Talk About a Diagnosis

Luke had an appointment with his nuerologist yesterday. We still do not have results from the blood work, urine work, EEG, and MRI. It is frustrating. I so badly want answers now. I need to wrap my head around something, deal with it emotionally, and move on. I am almost feeling angry. One thing was said during the appointment that totally shocked me. The doctor said she would feel comfortable giving him a diagnosis of cerebral palsy. When I thought about someone with CP, my mind automatically took me to experiences with people in wheelchairs who do not use their arms, hands, legs, and feet. These same people also cannot communicate. Luke just doens't fit into that group of people. He uses his arms and hands and he at least moves his legs and feet. I really didn't respond to what the doctor said. I really didn't know a whole bunch about CP.

I called Marty after the appointment. He didn't want to talk about it. I then talked to my mother who told me that she had been thinking this all along, but also knows that doctors give the CP diagnosis when they don't know what is really going on. Mom is always so good at helping me find peace.

So, I went online and looked it up... and actually, I was quite surprised to find the diagnosis is pretty right on. I am looking forward to see if the MRI and EEG support the theory that Luke is CP. Here is some CP information I have found...

What is Cerebral Palsy?
The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches 3 years of age. The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy. A small number of children have cerebral palsy as the result of brain damage in the first few months or years of life, brain infections such as bacterial meningitis or viral encephalitis, or head injury from a motor vehicle accident, a fall, or child abuse.

Is there any treatment?
Cerebral palsy can’t be cured, but treatment will often improve a child's capabilities. Many children go on to enjoy near-normal adult lives if their disabilities are properly managed. In general, the earlier treatment begins the better chance children have of overcoming developmental disabilities or learning new ways to accomplish the tasks that challenge them. Treatment may include physical and occupational therapy, speech therapy, drugs to control seizures, relax muscle spasms, and alleviate pain; surgery to correct anatomical abnormalities or release tight muscles; braces and other orthotic devices; wheelchairs and rolling walkers; and communication aids such as computers with attached voice synthesizers.

What is the prognosis?
Cerebral palsy doesn’t always cause profound disabilities. While one child with severe cerebral palsy might be unable to walk and need extensive, lifelong care, another with mild cerebral palsy might be only slightly awkward and require no special assistance. Supportive treatments, medications, and surgery can help many individuals improve their motor skills and ability to communicate with the world.

What research is being done?
Researchers are investigating the roles of mishaps early in brain development, including genetic defects, which are sometimes responsible for the brain malformations and abnormalities that result in cerebral palsy. Scientists are also looking at traumatic events in newborn babies’ brains, such as bleeding, epileptic seizures, and breathing and circulation problems, which can cause the abnormal release of chemicals that trigger the kind of damage that causes cerebral palsy. To make sure children are getting the right kinds of therapies, studies are also being done that evaluate both experimental treatments and treatments already in use so that physicians and parents have valid information to help them choose the best therapy.

3 day trip to Sacred Heart Hospital

It has been a long three days. Luke's EEG has turned out to be a 48 hour test. He has wires hanging from his head from a modified ponytail. He has been such a little trouper. He has been poked and prodded and still manages to enjoy himself. Luke has had a couple "staring" seizures, but has not had a major episode. The whole purpose of the EEG is to identify what Luke's seizures look like. I am frustrated. It's as if I am praying that Luke will have a seizure so that we will know what it looks like. The EEG will also help us see if he is epileptic. The doc came in this morning and asked us if we would want to stay for another 24 hours to increase the chances of seeing one of his major episodes. See, not only is Luke hooked up to a computer, he is also being recorded on a web cam. So, Luke has to stay in his little hospital crib.

I really want to go home. I am tired. Marty is tired. Luke has actually acquired a snotty nose and a barking cough since being here. I hate hospitals, but I want answers. What is the right thing to do? Should we go home and let Luke rest before having to come back Monday for an MRI? or should we stay to try to catch a seizure? I really don't know! I wish I could just take a walk with God and get an answer. If only it was that easy!

Frustration and an Update

We have not received any information about the genetic tests at Shands. It is frustrating. No one knows what is wrong, yet we all know something isn't right. He had blood taken at Nemours in Pensacola to test for allergies. The results have all come back negative. He is not allergic to several things- pet dander, pollen, etc.

So, Luke has a new neurologist now. I like him much better than the man he went to for the past year. The new doctor is thorough and kind. That is always appreciated. The doctor wants us to voluntarily admit Luke to Sacred Heart Hospital in Pensacola for three days of testing. He will have an MRI of his brain, blood work, urine work, and an over-24 hour EEG (brain wave observation). We plan to take Luke in on May 28th and stay until May 30th. While I am choosing not to worry, it is quite nerve racking. I am in prayer... constantly.

We have moved to a new rental. Luke loves to get on the floor and explore. He "army crawls" all over the house now. He is also putting small things into his mouth. We are finally having to baby proof the house. It's a good feeling :) I am proud of Luke. He is strong willed. That will prove to be a good thing in years to come.

People Who are Truly Strong

So many people see disabilities as a sign of weakness, but it is not. These people have gone through numerous tests and have been poked and prodded their entire life. They stand up in the face of doubt and discrimination. They are truly strong.

Luke has been through so much in 19 months. He has so much more to go through. Even though he has had some issues, he continues to be bright and sweet. I am the one who is weak.

There are people in this world who need to change their way of looking at people with disabilities. We have so much we could learn from all of them. They are, first and foremost, PEOPLE. Their disability is only a small part of who they are.

Update

Luke had his appointment at Shands in Gainesville, Florida this week. We met with the doctor and a genetic counselor. I had a notebook with me complete with all needed information and family health histories as well as pictures. The doctor did not tell us anything we didn't already know. Luke has obvious neurological issues, but looks completely normal otherwise. They took blood while we were there. They are going to do a more in-depth look at chromosomes. It will take two weeks to get results. (Another week and a half to wait). The trip was quite emotionally draining for me. I wanted answers. I am just going to have to be patient and wait.

Luke also had an appointment with a Rhumatologist today. They took blood also. The doctor wants to see if there are any allergies present. They are also testing for immune system difficiencies. We have a week to two weeks to wait for that.

The next step is an appointment with his new neurologist on April 7th. The Genetics doctor wants an MRI of Luke's brain. This will show if there is any atrophy. It will also show the effects of the seizures on Luke's brain.

So, more testing for Luke. I hate that he has to go through so much, but I do feel that we need answers as soon as possible. I want to make sure we can do all we can to help him.

Anxiety

Luke's genetic study is coming up in a few weeks. I can't say that I am feeling peaceful about it- I wish I could. I just so badly want some answers. This study could give answers, but the again, it may lead to more questions.

It is so hard to relate to Luke. Sometimes he is right there with us and other times he is in his own world. Tonight, for the most part, he was in his own world. I wanted and needed to hold him but the only time he would give me was when he was drinking his bottle.

I am so torn. Some people tell me that, because I am a woman of faith, I shouldn't worry, fear, grieve, or feel sad over the situation with my son. Others tell me it is ok to let myself feel the pain of this. Who is right? Who is wrong? I am conflicted. I worry. I fear. I definitely feel the pain of this situation... even though I try to keep a positive attitude about this.

Truth be told, I have never felt so much pain. This is my son... my flesh and blood. There is something wrong and I can't fix it. There is a high probability that, by the time it is all said and done, he will have a list of diagnosis' and disabilities. I so much want to have a real relationship with him. I want him to call my name. I want him to crawl... and walk!

I just want to feel ok with all this...

It's been a while

It has been a while since I last posted. My boss, the principal at my school, asked me about Luke today. I had to say that he is doing so well. He has got the love of Jesus all over him. He smiles and laughs and is a mommy and daddy's boy! He loves Marty. The moment he hears Marty's voice, he does all that he can to grab daddy's attention. I know he loves me also. He has begun to cuddle. He will lay his little head on my shoulder and I know that life is good at that moment. I know my son needs me.

The neurologist upped Luke's seizures meds. That is the best thing that could have happened at this point. Since the med change, Luke has been making more eye contact, army crawling with real purpose, babbling more, and becoming interested in his surroundings. I really believe that God is working in Luke's life. I see the grace of God in our situation.

I am still so proud of my little boy. He is amazing!