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!

Awesomeness!

The neurologist increased Luke's seizure medication. This has been such a great move! Luke has started really working on crawling. He is doing the "army" crawl now. He has also started eating table food. He has eaten grits, potatoes, cole slaw, green beans, and banana bits. I am so proud of my little boy. He is sitting up, and trying to stand up. He has grown so much in just a week! He went from having full blown seizures to growing by months developmentally. I am so thankful to God!

Behaviors

I took Luke to the mall today. He was in his own little world the entire time. About an hour into our adventure, Luke started showing signs that he was completely overstimulated. He was making weird noises and weird facial expressions. It is normal for him to act this way when he is overstimulated. What was different this time was that people were staring. I was so very uncomfortable. So, I covered his stroller with a blanket. He calmed down a bit, but continued to act strange for the remainder of the day. Mom says that she is at a place that she doesn't care about other people. I am not there. I do not care what other people think. I care about how people stare. I don't like it.

I dropped Luke off with Marty this afternoon so I could go to the dentist. When I came back home Marty told me that Luke had been having some major seizure activity. As I was making dinner, I noticed this major seizure activity. He was actually frothing at the mouth. I really do not know whether to worry or to just think that it is just something that Luke does. The doctor said to call the neurologist. I put a call into the neurologist, but no one has called back. Sometimes I feel like I am going crazy.

Constant Congestion

Luke has been congested since birth, it seems. Every month, we have to go see the doctor because he is running a fever and has green snot flowing from his nose. I want this to be clear- I HATE SNOT! So, I asked the doctor what could be done. She wants us to take him to an Ear, Nose, and Throat specialist. She also wants a catscan of his sinuses. Now, Luke had an MRI of his brain and sinuses at 3 months. It was completely normal. I wonder what could have changed in 1 year. He was congested back then. Who knows?

So, I guess we'll be able to add a catscan to the long list of tests Luke has endured. He is such a little trooper. He has been poked and prodded and looked at and discussed for a year now. He is still as patient with us as ever. God bless him.

To The Point of OK

I believe that I have reached the point of "OK"... for now. I have spent a week in Georgia getting to know my sister-in-law's 2 month old little girl. I thought that it would be a bit more tough to be with a little one who is "normal". It really wasn't. I enjoyed the fact that I could interact with Kherington and still feel happy. Babies, no matter if they have health problems or not, are true blessings.