No Words

I really did not know what to title this blog, so I left it as "No Words". My worries and fears about Luke have really gone away. Well, they had gone away. He is not feeling well. He is running a bit of a fever and is extremely congested- again! I get so frustrated about his health. Every other month we are having to deal with medicine, doctor's appointments, and his humidifier. It is so different with him. Sydney and Gracie stay pretty healthy. Even when sick, I have not worried about them. With Luke, I feel this great fear creep into my mind. The "what ifs" tend to just get me all worked up. The Bible says that God has not given us a spirit of fear, but of power, love, and a sound mind. I quote that scripture to myself all the time. It still doesn't change the fact that I would be traumatized if something bad happened to Luke. I guess I just need to get over the fear.

Christmas is 3 days away. I hate that Luke does not interact like other children. He sometimes doesn't even participate in his own life. He is in some other world 75% of the time. So, 5 out of 6 people in my family unit will really experience Christmas. Luke will participate as much as he can. I would so love to see his eyes glow with excitement. I would love to see him walk to the Christmas tree. I would love to hear him say "Mama". For now, an occassional smile will do, but oh how my heart wants more! To know that my little boys knows me and wants me would be the greatest Christmas present I could ever receive.

The Echo

Luke had an Echocardiogram a couple weeks ago. It showed that he has a "tiny" hole in his heart. It is something that corrects itself in the growing process most of the time. So, there is no real worry. They are just going to watch it and make sure that it heals.

Next up- the genetic study at Shands in Gainesville, FL in late March 2009.

A First

During our time in Georgia, Luke really began to reach out to me. He smiled when he heard my voice and even made some brief eye contact. A miracle occurred during this time. Well, it is a miracle in my world. I was laying on the floor in my in-law's living room. Luke was several feet away in his own little world. A couple minutes after I laid down on the floor, Luke began scooting towards me. He was looking straight at me and trying his hardest to get to me. Once he arrived by my side, he grabbed my shirt and pulled his face into my chest. He was laughing and trying to pull up on me. He was actually reaching out to me and wanting only me. It was the best single moment I have experienced since Luke's birth. It was in that moment that I knew that Luke knows me and wants me. I cannot explain how wonderful it made me feel. It was truly a miracle- a much needed miracle.

Progress

We are in Georgia right now. We have been here for 4 days now. I love Georgia! It is peaceful and beautiful. We are staying with Marty's parents. It is truly wonderful to be here.

Luke has been really active over the past couple of days. He has been babbling and moving around like crazy. Last night, he got on his elbows and knees and started almost crawling. It was awesome! I tried to get a picture, but every time I would click the camera, Luke would go flat. I am so thankful that I am seeing progress with Luke. He is such a great little boy! He has been laughing and playing. He has even been interacting with his grandparents. I am proud of my little boy- he is working hard :)

So Thankful

I am so thankful that I have my family and that I have my God! I am not sure how I would get through life's trials without them.

God knew what He was doing when he gave me a mother who is so strong and has faith like no other woman I know. I strive to be like her. If I could have half the faith and half the strength she has, I would be just fine. I don't think my mother truly understands how much I admire her. Every day she does something for me. She emails me and encourages me. She sees something in a store that she thinks I might like and she buys it for me, hoping that it will make my day. The love she has for me is so unconditional. For that, I am eternally grateful.

My step-father is equal in strength. He is such a good man. I am proud to call him dad. He has been patient and kind. He also loves me unconditionally. I don't know if I deserve the love he has given me, but I am so thankful for it! He is wonderful with my children and so very giving. Having him as an example has made me want to be a better person.

I strive to be a parent like my parents are.

I am also so very thankful for my husband. A little over two years ago, he chose to marry me and be a step father to my children. He is a passionate father. He looks out for the best interest of his children. They are blessed to have him. We are still trying to blend our family... we still have a road ahead of us. I pray that God bring us closer together through our diversity and not further apart.

I am so thankful that I have a merciful and forgiving God. He loves me no matter what I have done. I am proud to bring my family to church and I am hopeful that all of my children will know Jesus at the earliest moment. My oldest daughter, Sydney, asked Jesus into her heart on July 16th this year. I was not sure that she truly understands what she did, but I have found that she does know. She prays every day. She writes about God. She tells me that she loves Jesus. I am a proud Momma because I know that she is building a foundation. God will always be by her side.

I have a wonderful family. Each person is so unique and special. I am a very blessed lady!!!

A Day in the Life of Luke

This is Luke's usual schedule during the week...

6:15am- wake up
6:30am- be carried out the door into the cold wind by Mommy.
6:50am- arrive at the daycare provider's house and immediately demand food.
6:55am- a nice warm bottle with Kepra (seizure med) in it.
7:05am- bottle is finish, I am ready to play for a little while.
7:30am- breakfast (usually consists of fruit and cereal)
8:00am- ready to play again... put me on the floor!
11:30am- lunch
12:00pm- play or nap
3:00pm- snack time!
4:00pm- Mommy's here to get me!
4:30pm- We are back at my house. I get on the floor and play with my toys.
4:45pm- My sister Sydney brushes my hair. I act like I hate it, but I secretly love it!
6:00pm- Dinner
7:00pm- bath time... I have made a mess of myself :) Mommy takes a bath with me and teaches me how to play in the water.
7:30- 8:30pm- Play time and family time.
9:00pm- bed time (I sleep all through the night)

He has such a good time during the day. He loves to play with his toys. He also loves to listen to music. If I sing or play a cd for him, he will stop everything he is doing and listen. I truly believe that he is going to have a gift for some sort of music. I have the sweetest little boy in the world :)

Mixed Emotions

I really feel like I am going through some sort of grieving process. I have gone through all of the same emotions. <> I was, at first, in denial. I did not want to believe that something was wrong. I was seeing "red flags", but I was desperately trying to ignore them. Then, I began to let myself admit what I was seeing. I would only admit it to my mother, though. Admitting it to my mother helped me begin to seek help for what I was seeing. So, testing began. I was like a robot. I did not feel anything. I just knew that testing needed to be done. The EEG came back abnormal and I went into denial again. I thought that if I waited a while, Luke would grow and begin acting normal. All the while, I was feeling sad inside. Then, all of a sudden, I became angry about the situation. This is what led to the last doctor's visit. The anger allowed me to have the strength to be up front with his pediatrician. It also allowed me to be able to hear what she had to say to me. Immediately after the doctor's appointment, I became extremely sad again. Now, I am feeling angry again. At some point, I will accept what is going on and move on. Until I get to that point, I will just continue to walk through each day a small step at a time. Accepting Luke for who he is and what God made him will mean that I will have to let go of some things. It will happen. It is just a matter of time.

A Step Closer to Knowing...

I had a meeting with Luke's doctor today. Marty was there and so was Luke. Luke was tired and on his worst behavior. I was actually ok with that because it gave the doctor an opportunity to see the behaviors that worry me. I have a typed document with me to remind me of all the questions I wanted to ask.
Luke is going to have a follow up EEG and is going to have an echocardiogram. This will help us be informed when we go to have the genetic study done at Shands in Gainesville. Luke has had the following tests;
MRI (normal)
Chromosome analysis (normal)
EEG (abnormal)
Vision test (normal)
Hearing test (normal)
Metabolic testing (normal)
Swallow study- showed he needed therapy
Now, he will go through the genetic study at the end of March 2009. I asked what the doctor thinks the genetic test will do. We all know that if he is autistic, the genetic study will be inconclusive. So... here is what the doctor said- She said that, from the documentation I provided and what she has seen in the office, Luke has autistic behaviors. When I asked her what she thought would come back on the genetic study, she said that she thinks he has some sort of syndrome. He has some sort of syndrome with autistic behaviors.
I respect Luke's doctor very much. She has a son, who is now in high school, that is autistic. She has been through the struggles. She told me to not be afraid to allow myself to grieve. She says that she has been there.
When I ask Marty how he feels, he only says that Luke is his son and he is special and loved. He says he is not sad or upset. I feel like a complete idiot for being so torn up inside about this. I want, more than anything in the world, to go through this process with Marty. I just feel like he doesn't want to go through it with me. He gets impatient and snappy when I get emotional. Truthfully, I am hurting. I need something- some support, someone to talk to, someone who will let me cry and let me know that everything is going to be ok. My mother provides that for me... but... I would like it from someone who is not my mother... You know?

Perspectives

*Mommy* is concerned about development. She is concerned about how he is viewed by others. She feels like what is going on with him is her fault. She wants her little boy to live a successful life.

*Daddy* wants his little boy to live a good life. He does not want Luke to live life watching it pass him by. He wants his son to be able to participate in his life. Marty has a hard time dealing with the fact that he can't solve Luke's problems.

*Mimi* is concerned, yet has great faith in God, doctors, and therapy. She makes Luke food for when he stays at her house. She has high expectations.

*PapPaw* is a great support for the whole family. Luke goes to PapPaw's house all the time and he loves it there. PapPaw's heart is hurting because he feels that Luke doesn't notice him like the other kids do.

*Grandma and PaPa* are trying to stay informed in Georgia. They have been a great support and want Luke to have the best life possible.

*Sydney, Gracie, and Logan* all notice that Luke is different. They wish that Luke would respond to them more. They try to play with him and interact with him as much as possible. They are really good to look. They all protect him and watch out for him.

Thank God for family. I realize that everyone is affected by what is going on with Luke. I want everyone to know that I am thankful to have the support network that I have.

Seizures

I have known for several months that there is strong possibility that Luke is having seizures. In either March or May (I can't remember) of this year, Luke was admitted to the hospital because he was having breathing problems. During his hospital stay someone came an did an EEG. An EEG records brain activity. The results were "abnormal". Of course, they could not say that he was having seizure, but they speculated as a result of all provided data. Luke does not have typical seizures. He does not shake. He does have moments where he appears to completely space out. He doesn't breath. He doesn't even move. After several seconds it passes and he goes back to acting normal. He also has times where he "postures". He is in a sitting position. His arms are bent and stiff. His hands are also stiff. His eye are looking up at different points, so it appears that he has a lazy eye. He does not breath. Sometimes he makes strange noises. These moments also pass quickly.
He is taking a small dose of Kepra two times a day to control the seizures. I will admit that when he misses a dose, his strange behavior is even more strange than when he is taking his meds regularly. Sometimes I am not sure if the strange behavior is seizure activity or if it is just strange behavior. It is hard to tell the difference.
The strange behavior usually appears at a consistent time every day. It usually occurs after he has had a busy day. Around the time I pick him up in the afternoon (4:00pm), he begins to act overstimulated. He continues this pattern well into the evening. Sometimes he takes an early evening nap. The behaviors usually improve after that point. Sometimes, they don't improve. I can't wrap my mind around the reason that he acts certains ways. I guess we will just give it time. Answers will come.

Recent Victories

We celebrate every step forward that Luke makes. Here are his most recent victories...

1. Scooting forward to get an object of interest.

2. Drinking out of a bottle with Stage 2 nipples.

3. Eating Stage 3 foods. (Yipee!!!)

4. More eye contact every day...

5. Sitting up by tripoding for 3-5 minutes.

6. Trying to pick up small objects- able to pick up some small objects.

I am thankful that Luke is such a happy child. He smiles and laughs. He brings my heart joy. Congratulations Luke! Keep up the hard work :)

Lessons on How To Puree Food

We took Luke to the Fall Festival at BRE this past weekend. I do not think that my collegues at school realized how significantly delayed Luke is. After meeting him, they realized that he has many obstacles to overcome (and overcome, he shall!). The principal where I work had a chance to meet Luke. I told her about his weight issue and she suggested that I puree his food. I spent the next 24 hours seriously thinking about it. After talking with my husband and my mother, I made plan to go to Publix (the most heavenly place on earth for grocery shopping). My husband and I made the trip with a list in hand. $140 later, we had fresh fruits and veggies, grains, cereal, a hand blender, little bowls to store food in, and plenty of almond milk. We spent 5 hours on Sunday night cooking and blending the food. Luke now has carrots, carrots with beef, eggs yolks with butter and almond milk, peaches, bananas, apple sauce, and apple pear sauce. All can be mixed with oatmeal, rice cereal, probiotics, vitamins, and folic acid. Keep in mind that we bought everything organic and gluten and dairy free. I am hoping that the change in variety of foods will help him gain weight.

A Challenging Day

Today was a challenging day. Before telling about the day, I will begin with Monday. Luke had a fever and a runny nose Monday. By last night, he was fine. His congestion had mostly disappeared. Life was good. This morning, I woke Luke up at the normal time 6:30am. I take him to PapPaw every day. I noticed that he had a "barking" cough. By the time we got to my dad's house, Luke was hardly breathing. He was coughing so much that all he could get in were a couple gasps. So, Mom put him in the shower with her. It didn't help. I decided to take him to the emergency room. I was pretty freaked out.

After a breathing treatment, Luke was doing fine. I think the experience brought some things to a head for me. Luke weighed 17 pounds at his well-baby check up when he turned a year old. Now, he weighs 15 and a half pounds. So, where did the pound and half go? His weight has been an issue for some time now. He is failing to thrive. I just don't understand it. Is he ever going to grow? He seems to be stuck at 6 months old. Every time we see some progress, something happens that causes another step back. It is so frustrating.

I have decided that having a genetic study done at Shands in Gaineville is the next logical step. The study may be inconclusive or it may point to a clear problem. I don't know. I do know that it will at least rule out some things. The problem with the genetic study is that we will have to pay for the entire trip. We will have to pay for meals and stay in a hotel. Where is the money going to come from? Who really knows! I know that God has provided and I know that He will continue to provide. I have no doubt in that.

I just desperately needs some answers.

The Beginning of a Journey

My youngest son, Luke, was born a little over thirteen months ago. He has brought so much joy into my life. He has also brought emotional struggles to our family. He is a different child. He does not crawl or talk. He spends much of his time in his own little world. His brother and sisters love him. They also protect him. He is blessed to have such a wonderful family.

This blog will chronicle the lives of Luke, his brother, his sisters, his mother, and his father.

Victory 1- After three days of OT, PT, and Speech Therapy, Luke is scooting!!! He is now moving forward to get an object. Yea!!!