Friday, June 26, 2009

Refreshed

I spent the day with my two girls today. We took our puppy to the vet and went to Target to spend tooth fairy money. I am finding that shopping is theraputic. The girls bought some items from the dollar section and I bought them summer camp appropriate shorts and shirts. They are going to Santa Rosa Christian this summer. They have strict dress code rules, so I had to buy the girls shorts from the boy section. I hope they'll forgive me :)

Gracie and Sydney love to brush my hair, "play lotion", and put make up on me. They are so cute. They will fight over which side of my head belongs to them. I really needed this time with them. Now I feel refreshed and ready to face any challenges that may come my way...

Here is what Sydney wrote to Jesus today- "I love Lord. He has blessed me. When I call Him he comes to me". She accepted Christ on July 16th, 2008. She knows her Lord. Gracie is getting there too. She is beginning to understand Christ's love for us. :)

Thursday, June 25, 2009

Not Forgotten

It is so easy to become consumed with all that is going on with Luke. There are just so many questions in my mind. I spend so much time thinking about everything. I have noticed that my other three children are engaging in some quite dramatic attention seeking behavior. It has kind of shook me back into reality. All of my children are equally important. They have all changed my life. They all deserve so much. I guess we are all learning how to act in a large family. I was an only child. My husband was one of two children. Our children are getting used to it also.

I am sure my children have noticed that I am really distracted. They are also hating the fact that I am working this summer. I guess I feel a bit guilty. I hope that all of my children know that I truly love them. I need to learn how to meet the needs of my children. Now, I realize that I am not capable of meeting all needs. I do need to clear my head and allow myself to truly enjoy what God has given me without worrying about the cares of my life.

Monday, June 22, 2009

Total Awesomeness!


Just a few minutes ago Luke did this! He pulled up to the table in order to get his bottle (major reinforcer!). He tried for about 5 minutes, then became frustrated and fell back on his bottom. He then did something great- he tried again. He actually walked on his knees to get back to the table to try again. This time Marty moved his bottle closer so he could get it.
He is a totally different child since being off his seizure meds. He interacts more and cuddles more and makes more noise. It is truly fantastic! To see my son act more like the boy I know him to be has brought me so much joy! Yes, he still has strange behaviors and he still does not communicate with words... but... he is communicating with actions now. He is looking at what he wants and moving towards it. He is noticing the world around him. He now notices the leaves in the trees and his siblings. He is truly an awesome little boy and I look forward to seeing him grow... Then, we will give God the glory! God has been good to us. God has been good to Luke. I guess I am just realizing that now. I have been so confused as to why Luke had to go through this. Now, I truly believe there is a higher purpose. There is a plan. There is NO coincidence.

Monday, June 15, 2009

Tests that Led to More Questions

So, One great thing came out of the three day testing that took place. We found out that Luke is not having seizures! How awesome is that?! It is a total answer to prayer. He no longer has to take meds. I noticed a couple things while he was not on meds during the testing- he smiles, laughs, makes some eye contact, and tries to communicate a bit. It is awesome! So, thank you Lord for an answer to prayer~

The one frustrating thing is that the testing really didn't provide any answers. We know what is not wrong... we just do not know what is wrong. It is frustrating. I really want answers~

Wednesday, June 10, 2009

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.

Saturday, May 30, 2009

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!

Tuesday, May 19, 2009

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.