Faith Without Sight: Our Journey

Becoming...

2012-02-03T19:08:00.000-08:00

The Daniel Family Christmas 2011

Marty, Jaime, Logan, Sydney, Gracie, and Luke
Taken at PapPaw and Mimi's House (The Rogers' Christmas Celebration)

The Rogers and their lovely grandchildren - Christmas 2011
PapPaw, Mimi, Logan, Gracie, Luke, and Sydney

Luke's Christmas Experiences

Daddy and Luke bonding time with presents. Pure joy!

My BIG Tampa Family

We took the kids (Logan, Gracie, Sydney, and Luke) to see Grandma A. They all adore her. Luke had a chance to meet some extended family that Mommy hadn't seen in years. It a blessed trip to Tampa

To Grandma and PawPaw's We Go- finally!

Luke truly enjoyed rolling his bus up and down the hardwood floors in their home. He feels perfectly comfortable there :)

Becoming...

We are all truly unique, yet we are becoming a beautiful blended family.

The Untitled Holiday One

2011-12-17T18:15:00.000-08:00

This would be my facial expression after being told that there are only 7 days until Christmas! Ahhh! I have so much left to do! So, today was my day to accomplish I few things. My Christmas shopping is completely done. The decorations are all up and the presents are wrapped under our beautifully decorated Christmas tree. I got my first spray tan done last night. I went from pale to waz-am in 20 minutes. I like it and I believe I might do it again. It's helping me out of this "I have four children, a second full time job teaching kids, and no energy" attitude.

So, I am taking a new approach. Everything is great and I will choose to see the humor in the things that aren't so great. So, I am going through another Christmas with children who may or may not be completely happy with what they have been given. One of my four children will find more joy from banging the Christmas toy against the tile than actually playing with the toy. It's all good. We are all so wonderfully unique. God bless Logan for having to go through two separate Christmases and feeling uncomfortable living a split life. God bless Sydney and Gracie for having a father who is choosing not to be involved in their lives. God bless Luke for being disabled. Honestly, God blessed my children through their circumstances. God gave Logan a step-mom who loves him and provides for him. God gave Sydney and Gracie a step-father to help them grow spiritually. God blessed Luke by giving him an entire family who prays for him every day.

So, for all that could frustrate us, we choose to view the blessings. What an awesome life we live and what an awesome God we serve! Merry Christmas all~

It's Christmas Time Again- Updates

2011-12-11T18:28:00.000-08:00

Wow! I just realized how quickly this past year has flown. It seems like yesterday that we had bought our new house and were putting up new Christmas decorations.

So here's for our updates:

Luke's Broken Clavicle

Last Saturday, Luke fell out of our tall chair on to the tile floor. He immediately started fussing and continued fussing for the next couple of hours. So, I took him to Santa Rosa Medical Center. After 3 hours and a CT scan, we were discharged. They said he would be sore for a while. I took that at face value. So the next day, I was getting ready to give Luke a shower and I noticed that his right shoulder was really swollen. Marty and I made the decision to take him to "Dr. Happy" that next day. Long story short, his right clavicle is broken. He is a brave little boy and is now doing great. He is healing quickly.

Christmas Shopping With Luke

Marty and I discovered the greatness of taking your child with autism Christmas shopping for himself. We were able to go through the store and let him try different toys. We found three that he really liked and bought them. We got home and he still wanted to play with the toys, so while I was wrapping other gifts, he kept playing. When he moved away from the toys, I took each one and wrapped them and placed them under the tree. He didn't even realize what had happened. I bet that he will be surprised on Christmas morning!

The Decorating of the Christmas Tree 2011

We take pictures and videos every year of the children decorating our Christmas tree. We listen to Christmas music and drink hot chocolate. This is the picture of our four darling children. It will not be long and we will be looking at teens in this picture! Oh how I want to treasure these memories. They are so precious to me!

The Love Between a Father and His Son

Luke loves his daddy. This picture was taken as Marty and Luke were watching Logan's basketball team, The Hurricanes, play a game. Luke desires closeness with his father.

Faith: The Replacement Behavior for Fear

2011-11-04T15:46:00.000-07:00

Halloween 2011!

I love these pictures!!!

I have been reading a daily devotional written by a lovely woman who has a son with autism. In the devotional, she is very truthful about the joy and pain of raising a child with a disability. Their is a short story, verses from the Bible, and a short prayer for each day. What a blessing this devotional has been! It is amazing to find out that other ladies have gone through what I am going through. I truly believe that God has called parents of children with disabilities to bless each other.

Our Testimony:

I put a picture on Facebook that had the four kids with a grocery cart. I was thinking that Marty and I were kind of brave that day. We took all four kids to Winn-Dixie to get groceries for the next two weeks. There were two comments that changed my perception of our situation;

"Saw you and the girls holding Luke's hands and walking down the sidewalk after church this morning...thanked God for all He is doing in the lives of your family. It was so precious watching Luke walk. Just wanted you to know that God is using you and this journey with Luke as a testimony of God's faithfulness!"

" I was there walking with Amy, it was definitely a God moment. Luke is a walking testimony and so are you and Marty."

Our family has a testimony. Each one of us has a story. God has been with us and has had His hand on all of our lives. Luke has a testimony. He was born to bring Glory to God.

My Ministry:

"Chasing Away"- I was called to bless the lives of other parents who have children with disabilities. The following comment was left on Facebook;

" I'm so happy to see you've made a group for other moms in the area to get together and support each other! That's a ministry need that's so often overlooked. : )"

The person who left this comment helped me realize that what I am already doing is a ministry. It needs to be thought of as a ministry.

An Update:

Luke is now attending a new school. He is doing so well where he is! His teacher is an amazing lady. There is not a day that goes by that I don't thank God for leading us to this class. Luke is walking more and more. we have found a gate trainer that Luke likes. Hopefully we will have one for him soon. He is also finger walking. He will hold on to one person's finger and walk. I am so proud of him. He is making such great gains. I have to give glory to God for Luke. He continues to do better than anyone could have expected!

Beauty

2011-09-12T13:52:00.000-07:00

This is Luke at Splash in Panama City, Florida. Splash is a resort with condos. The bottom floor has pools, a lazy river, and something called "The Bucket". Logan, Sydney, and Gracie LOVE this place. It is perfect for them. They don't stop moving until around 9:00pm. My parents take us every year. It is a huge blessing! We arrived on a Friday evening with Luke. He swam with Marty and the older kids at the lazy river. After 45 minutes he was purple because he was cold. Here is a picture of him when he was cold-

He enjoyed himself, though. So, he did not go in the water for the remainder of the trip.

I am truly amazed by Luke. I just love watching him. He is beautiful. I wish I had the words to describe my love for him. My love for him is truly unique. It is different than my love for my husband or my girls. My girls give love back. I say. "I love you" and they say "I love you" back. Luke has his ways of giving love back to me also. I pick him up and he puts his head on my shoulder and touches my back. He presses into me.

Luke is a beautiful child inside and out. He is the glory of God revealed in a human being. He is not God, but he proves that God exists. God's hand is on this child. He brings so much blessing into the lives of the people he is around. His teacher says that he is unique. He is unique indeed.

Thank you God for giving me this beautiful little boy to love and care for. God has changed my life through knowing and loving Luke!

Time to Update

2011-08-28T16:45:00.000-07:00

So much has happened this summer. I have decided that it is time to update. I have avoided it because I really didn't feel like I had the energy to write about it. Now, I am feeling motivated.

The "A" Word

During the summer I became motivated again to push for a diagnosis for Luke. I knew that one diagnosis would not be the end of our story, but we had gotten to the point that we needed some financial help with testing (medical) bills. I had talked to Luke's doctor about the autism diagnosis, but she was not comfortable with giving that diagnosis. At the beginning of the summer, we got the diagnosis of "an unknown syndrome with autistic features". It turns out that our insurance company would not take that as a diagnosis. So, at the end of the summer we went to the neurologist. I was shocked when we didn't see the doctor. We ended up seeing the nurse practitioner. I was upset at first, but it ended up being a God thing! At the end of the appointment we scheduled another EEG. We also were told that we needed to have a sleep study performed for possible blockage apnea. We were told that no one would take our insurance, so we would need to pay $650 for the study. I am still looking for a place that will cover this. The last thing we were given was a diagnosis! We finally received the autism diagnosis! I was so relieved. Now, we can try to get ABA services covered. That's a whole other issue! Autism is definitely not the end of Luke's story, but I was relieved to have something so I could move forward with pursuing social security disability and get Luke on the Medwaiver waiting list. I am still working on that at this time.

The First Day of School

As you can see from this picture, Luke was quite annoyed that he had to wake up so early. He went on to have a great day at Benny Russell Elementary. This year is going to be an awesome year for him!

EEG's and Doctor Appointments

Luke was scheduled for an EEG this past week. He screamed from the moment he arrived until his Mimi had had enough. She has rescheduled his EEG for a later date when he can be sedated.

He had his well-child check-up and we found out that he had gained a pound and a half since May. Go Luke!!!

So many reasons to celebrate and so much work ahead!

GI Clinic and Children's Hospital in Birmingham, Al (Trip #1)

2011-08-02T19:02:00.000-07:00

We saw a doctor at a GI clinic on Thursday July 14th. Marty, Luke, and I traveled up to Birmingham that

day. It was a really peaceful trip. We went to see this specific doctor because we had concerns about Luke's digestion or lack-thereof. His stomach just gets so big and hard as a rock. He also passes some pretty obnoxious gas.

The GI doc suggested that we have a "breath hydrogen test" to test for intolerance of fructose. Long story short, we ended up staying the night in Birmingham and the test was performed the next morning at 8:30. Luke had to fast overnight. Once we arrived, a nurse (really sweet lady) put a mask on Luke's face to collect his breath. She did this twice. Then, she gave Luke a really concentrated amount of fructose in his sippy cup. Every 30 minutes after, she would do the mask thing twice.

Several days later we found out that he is, indeed, fructose intolerant. He can no longer have corn, foods with fructose (or high fructose corn syrup), corn syrup, tomatoes, peaches, cherries, and a few other fruits that I cannot recall. The number one thing he can't have is sweet potatoes and carrots. These two veggies have been a staple in his diet since he was an infant.

Over the past two weeks we have adjusted his diet. He is also taking Flagyl (a medicine to rid his intestines of bacteria). The medicine has really helped and I have found out that Luke's body does not tolerate peas well at all. We are still working on the diet. I think we will continue to see improvements.

Thank God that the doctor was knowledgeable enough to suggest the fructose intolerance test. Now Luke is enjoying gluten and dairy! He loves whole milk :)

The Beautiful Storm

2011-07-03T19:08:00.000-07:00

The pastor of my church preached on life's storms today. During the sermon I thought about many of the storms I have gone through in my 30 years of life (thus far). Many of them were caused by other people in my life. Most of them were caused by my own actions. Few were caused by reasons unknown. I would consider what I have gone through (and what I continue to go through) with Luke one of the greatest storms. I would also consider what I have gone through with Luke one of my life's greatest victories.

My heart and mind are constantly on the other parents who are going through what I am going through. No one truly understands us, except those who are going through it. The pain and the beauty of our situations make us unique. There is a lot of hype concerning autism, yet there are many who have children with different diagnosis. Where are the support groups for those with no diagnosis?

Oh Lord, if I could only be given the opportunity... I want to be what no other organization or person has been to these parents.

A Simple Sign of Trust

2011-06-22T17:24:00.000-07:00

His Hand in Mine...

Luke shows me everyday that he completely trusts me. He will grab my hand so sweetly. He will look at me and smile. It is these small signs that keep hope alive in me. Lord help me never to take these little signs for granted....

Our Movie Experience

2011-05-29T17:57:00.000-07:00

So, we took all the kids to see a movie today- Kung Fu Panda 2. I just so badly wanted to do something fun. I wanted to see a movie. I guess I was feeling selfish. There are so many things I can't do with Luke. He is sensitive to extreme heat and sunlight and cold. He is light sensitive and sound sensitive as I found out during the 15 minutes I was able to stay in the movie.

Luke became extremely overstimulated. He started stiffening and flapping his hands. Then, the high pitched sounds started. The sounds turned into screams, so I just took him out of the theater and walked him up and down the hall. He continued to flap and scream. It wasn't that he was upset. He was excited. After 30 minutes of walking, he had calmed enough for me to carry him to the bathroom. Then, I found a table in the lobby and we sat for 45 minutes.

So, what have a I learned? Luke does not do well at the movies. So, I should not be so selfish to take him into a place that causes him such sensory overload. I will stay just stay home with Luke and let Marty and the older kids enjoy themselves.

I hate the fact that Luke can't enjoy the things that his neurotypical sibling do. I guess, I am upset. I so wanted it to work. It just doesn't.

I will praise You in this storm...

2011-05-11T17:06:00.000-07:00

I look at my son and all I can see if perfection. I know, in reality, he has autism and cerebral palsy and cognitive delays, and he is non-ambulatory, and he has gastrointestinal issues, and... the list goes on an on, but to me he is Luke, the 3 year old little boy that I am so in love with and would give my own life for. So, I am caught in this in-between world. My heart and spirit know that my son is something more than others give him credit for. My mind and this world tell me that he is "low functioning". I can be reality based, but I long to dream for my son.

I look at my family and I see beauty made from ashes. Marty was a broken man. I was a heart-broken, hopeless woman. We came together and made something so wonderful. God created a family from broken pieces. We are so blessed.

Our family is currently on stormy seas, but we have hope. Jesus was on a boat, a storm was fast approaching, the waves were building, yet he was asleep. The disciples were flipping out, yet Jesus was asleep. Once he awoke, he went to the waves and said "Peace. Be still." and the waves were still and the wind died down. There is a mountain in front of us, but our faith is strong and we are telling that mountain to move in the name of Jesus!

So, while I am dealing with sadness, grief, and anger, I know that He that is in me is stronger than this world!

Praising God, But Still Needing To Vent

2011-04-27T08:04:00.000-07:00

This is the most recent picture of Luke that I have on my computer. He's such a sweet spirited child. He smiles and laughs and is generally low maintenance. How blessed I am to have a child like him! I pick him up and he puts his little head on my shoulder and touches my arms with him hands. He hugs me back sometimes and I drink in the moment. Having a child like him has made me really appreciate the small things. When my daughters tell me that they love me, I treasure the fact that my daughters and I have a great bond. When I sit with my step-son and he tells me all that he knows, I thank God that my step-son talks to me. I am a truly blessed woman for I have been given the opportunity to love selflessly. Being blessed does not dismiss me from going through trials, though.

The primary question that continues to run through my head is; "Why does everything (i.e., services, education, diagnosis, health issues, etc.) require a fight?" In other words, why in the world does caring for Luke require such a fight and so much energy? He has no diagnosis, so I am having to fight for him to receive one. Why does he need one? Well, with a diagnosis comes the privelege of receiving services and therapies that he is in great need of. Why does he need services and therapies? School is not enough.

I wrote the first two paragraphs of this blog over a month ago. I wish I had more time to write. I would love to be able to have the time to reflect on all that is happening. There are so many great lessons I am learning right now. I would like to list some of them so that I may come back and thoroughly cover the subjects one by one;

1. Never speak out an opinion of another person's parenting skills unless you know, without a doubt, there is some sort of abuse or neglect occurring. You are not in their home, therefor, you have NO IDEA about what is really going on.

2. No child is BAD. Every behavior has a function. There are adult who are bad, but there are no children who are bad.

3. I am not alone in my frustration.

4. Men do not understand the emotions of a woman.

5. You cannot expect those who do not have children with disabilities to really understand what you are going through.

6. Always have a pre-IEP meeting with your child's teacher before the IEP. You all want to be on the same page so the IEP meeting flows nicely and you are not totally blindsided by recommendations.

So, I have plenty to write about. I wonder how many months it will take me :)

Blah.

2011-03-06T16:57:00.000-08:00

Today was the first day that Luke attended his "Special Friends" class at church. This was, of course, at my insistance. He had been with the 18 month olds since he was 2 years old. Luke will be four later this year and I felt that it was time for him to move. His Special Friends teacher was great with him and he seemed to really like it in there.

So, why would I be feeling sad? It's just another moment of emotional upheaval. I feel guilty for feeling sad. I guess I go through times when reality really hits me.

I am just tired.

This is us... take us or leave us but we rock!

2011-02-23T17:49:00.000-08:00

This is all of us. We are goofy and we love each other deeply. Luke has an amazing support system.

I think about all I know and all that I am continuing to learn. Each family has a choice to make when it comes to their child with a disability- either the disability with rule them or they will rule the disability. It is wrong to allow a persons disability to become the main focus of a family. The disability is definitely part of the equation, but so are the goals you have as a family. Don't let yourself become so obsessed with your child's disability that you can't look beyond it. These kiddos are amazing and they have such huge potentials. Dare them to reach their potential and provide support for them to get there. There may a few fits and they will make you think that they can't do what you are asking of them, but believe me, they will thank you in the end.

PICA

2011-02-03T14:53:00.000-08:00

This is a picture of Luke "stemming" on the wall at his doctor's office. We have a name for the eating behaviors Luke has been engaging in for the past several months- PICA. His obsession with walls and eating paint has become overwhelming. We also found out that he has lost 2.5 pounds. It is really hard to deal with because I don't know what is causing it.

I try and try to provide all the nutrition he needs. He gets his meals, snacks, and extra stuff in each sippy cup, yet he is losing weight. I guess it is easy to feel hopeless about Luke. Everything with him is a struggle. I am so thankful for my mother. She is such a great support. Other than her, I feel like I am going through this alone. I worry and dream and have panic attacks.

It feels like my heart is breaking over and over.

New concerns- Dr. Happy, here we come!

2011-01-30T14:52:00.000-08:00

So, the wall licking and paint eating is getting worse. Instead of one wall, there are 6! I have documented this and taken pictures. He is also chewing pennies. He will pick a penny out of a mess of silver. There must be something in it that he likes. He also ate handfuls of sand from our backyard play area today. I didn't realize what he was doing until he had eaten a bunch. I spent all day yesterday worrying that he was going to harm himself with all that he ate. He is also eating mulch. We took him to a local park that has mulch on the ground. We put him down and he tried to eat the mulch.

This is all so concerning. I know that he is like a 1 year old mentally and 1 year olds eat sand and stuff, but they don't eat wood and paint. I have a student that has PICA. PICA is a disorder in which the person craves and eats stuff like dirt, clay, sand, etc. I am just concerned that Luke is struggling with the same thing.

On the positive side, Luke's personality is definitely getting brighter and happier. He smiles and laughs and just has so much fun with himself. He reaches for me and Marty. He actually is showing a preference for Daddy. In normal circumstances I would be jealous. In this circumstance, I am so happy! Marty and Luke have such a good time together.

I love my son, but sometimes my concerns completely block my view of the good things. God help me...

The Weekly Visits to the Doctor, Digestion, and The Object of His Affection

2010-12-05T17:31:00.000-08:00

The Weekly Visits to See "Dr. Happy"-
Lately we have been spending a lot of time at the doctor's office. Luke has been sent home from school almost once a week since school began in late August this year. There are a couple things he has chronic issues with;
1. congestion, 2. ear infections (just starting recently), and 3. running pooh pooh. Luke has dealt with congestion since birth. Since having his adenoids taken out, he has had congestion less often and it has not affected his breathing as much. This, of course, is a big relief . He has just started getting ear infections. He has had two double ear infections in two months. This means that he has had two big doses of antibiotics.
Luke eats pureed food, so he has runny pooh pooh. This leads me to my next subject- digestion.

Digestion-
During Luke's last visit to the doctor (Friday), the doctor looked at how many times Luke has been sent home from school as a result of his pooh pooh issues. She noticed a pattern and said that we, of course, know that he has an "unknown syndrome" and does not surprise her that new health related and behavior related issues have begun to show up. These new health related issues are probably a part of the syndrome that has not been identified. The doc hypothesizes that Luke's body is not digesting foods that contain carbohydrates. This is something we agree about. I have also hypothesized that he is not digesting properly. So, now, his last poopy diaper is wrapped up tight and is in a ziploc bag in the refrigerator. It will be delivered to the doc tomorrow. I am actually hoping that it will give us some answers. Hopefully, all we will have to do is make some dietary adjustments. At least it gets us moving in some sort of direction. This now brings me to my last subject- The Object of Luke's Affection.

The Object(s) of His Affection- Our Walls.

Not only is Luke scratching our walls with his little fingernails, he is now licking the walls and using his teeth to scrape the walls and eat the paint. I, of course, stopped him, but he keeps going back. If it's not the wall in the picture, it's the corner of the wall across from him or in the dining room or in the bathroom or in his room or it's the wall in his sisters' room where a basket sits with books in it. He loves baskets also, but they pose less of health threat to him.

I am upset. Two new things have come up. We first think about having to change his diet so he can digest his food. We now have to think about completing a Functional Behavior Assessment (FBA) on my son for this wall licking, biting, and paint eating behavior to keep him from doing this brand new behavior. It's one thing if he uses his nails. It is completely different now that I am seeing him eat the paint he licks or scratches off.

What's next, I wonder.

I am thinking that I need a break. I don't think I can handle worrying anymore. He was making so much growth. Now, we seem to be regressing. I don't know. I am just upset.

Blah

2010-11-15T15:41:00.000-08:00

My anger has gotten the best of me lately. I have tried to talk myself out of it or think myself out of it, I guess. I am worn out. Being a teacher of children with autism has given me a huge shot of reality when it comes to Luke. I focus on the positive or I try to, for the most part. I accept that he is different, yet I find myself feeling sad. What a mixture of emotions. Thank you, Lord, for making me a woman.

My older three are having problems of their own. Behavior and academics are challenging. I often overreact because I do not want anything bad to happen to them. Any problems that are occurring, I want fixed- immediately.

I am blessed with my job. I am successful. I have worked hard. Family life is challenging. Really, the challenge is the turmoil that is going on within each of us. We have a blended family and each of us have our own unique personality and inner challenges.

So, why write all this junk? I want to remember the challenges. I do not want to dwell on them, but I do want to remember where I have been so that I can remember who has brought me from that place. Growth cannot occur without questions and emotions. How can you discover who you are and what you believe in without questioning? We teachers have learned, through much education and training, that it takes questions to learn. You must ask higher order thinking questions in order to help others find the answers in themselves. So, this blog is an answer to the question, describe how having a child with disabilities has changed your life for the better and what challenges it has presented. Describing my emotions- the good, the bad, and the ugly- has allowed me to understand what God has really done in my life.

He has given me the direction that I have prayed for. He has provided the drive I have needed to succeed. He has also provided the grace and mercy to cover the many mistakes I have made a long the way. Logan, Sydney, Gracie, and Luke have shown me what true love really is. God gave me my children to help me discover how He loves me.

My Buddy Who Has My Heart :)

2010-11-14T14:44:00.000-08:00

Luke and I have so much fun together. He's been my little "water buddy" for a while. When he was a newborn, he expressed that he hated water. I just thought it was a newborn thing, but several months later, he was still freaking out during bath time. I was realizing that it was not just a boy thing or a newborn thing, it was a sensory thing for Luke.
Kids with disabilities have sensory issues. Some are extremely sensitive to noise. They cannot endure loud noises. Something inside their brain goes into overload when they in a loud environment. Other children with disabilities have sensitivities to bright light. The bright light overstimulates them and they become scared. Luke has touch sensitivities. He is especially sensitive with his feet. The first time he stood on grass with his feet, he flipped out. His therapists would try to rub his feet with beans and rice. It was torture for him.
Bath time was torture for the longest time. Even if his water was luke warm, his skin would turn bright red. His hands and feet would look like they had been dipped in boiling water. Since I new it was sensory problem, I decided to try a little therapy of my own. I started taking baths with him. He would lay on my chest and I would gently wash his body. Once he grew comfortable with this, I would physically take his hand and teach him how to splash. He soon was laying on my chest and splashing at the water. So, I moved him so that he was sitting in the water. We continued the splashing. It took a year, but we finally reached the point that he would sit in the water without me being in the tub with him. Now, there is no fear or discomfort. Only when I spray his face (by accident) with the shower head does he fuss. I am so proud of him.

This experience with Luke taught me so much. I now teach pre-k aged kiddos with autism. Each of them have their own specific and unique sensory needs. I know, from experience, that all I have to do is provide repeated exposure to situations that are uncomfortable for them in order for them to change and grow.

Having Luke has also taught me how to treat the parents of my students. I think back to how much heart-break I went through. I have felt pain and fear. I can see this is the eyes of my students' parents. So, I am planning a "Fall Celebration" for my students, teacher assistants, parents, grandparents, and front office staff. We will have turkey and dressing and mash potatoes and mac and cheese... and of course, we will have McDonald's McNuggets :) We all deserve a little celebration!

Another huge step in the right direction

2010-09-20T18:33:00.000-07:00

Luke's teacher sent me a video text today. The video was of Luke eating snack. He was feeding himself, out of a bowl, with a spoon. It brought tears to my eyes. He has started walking with assistance and is feeding himself. Just a little over a year ago, he wasn't even sitting up without support, yet he has grown so much in the past six months.
God has done a great work in my life. He has done a great work in Luke's life. He has been there, holding us. The past couple of years has been full of ups and downs, and we have become stronger because of them. I guess that is part of being a Christian. We all know we will have trials. The difference is that we have true hope. We know we may be riding the waves of life, but we also know that we will stay safe because it is Jesus who will calm the waves.
It is so hard to not know what is really going on with Luke. In some ways I would like to have a group to belong to. A group to advocate for. Amazingly enough, God has given me that through my profession. He has given me hope through seeing Luke grow. He works it out. He knows what we need and what to do for our individual situations.
It is amazing what one small miracle can do for a family. Thank you Lord for giving us hope!

Our Answer to 18 months of prayers

2010-09-06T20:31:00.000-07:00

My prayers were answered yesterday. My mom has told me how the teacher assistants in Luke's classroom have Luke walking up and down the long halls in his elementary school building. I got the brilliant idea to test it. We pulled into a parking spot that was a short distance from the sidewalk leading to the preschool building. We got him out of the car and into his gait trainer. With only a little belt to provide physical prompting, when needed, I started walking with Luke as he gingerly stepped onto the concrete parking lot.
Each foot of travel seemed to energize Luke. He was smiling and laughing and high stepping. He was really happy for himself. He made it all the way to the preschool building and wanted to walk more. So, he walked to the door of his room. I was so happy to say that he had walked into church this morning. It was truly a tear-worthy moment.
I had planned on venting my emotions, but praising God is such a better option! God gives me hope that this won't be the last miracle and it definitely won't be the last answer to prayer.

The Broken Record That Plays

2010-08-06T13:27:00.000-07:00

Every doctors visit is the same. "He obviously has a syndrome.", they say. We might not ever find out what it is because all tests have come back normal. I no longer make appointments that are not really needed. We no longer have testing done unless there is a true medical reason. Many other parents would be happy with the fact that their child does not have a diagnosis. A diagnosis doesn't change a thing. It just gives a name to what is going on with your child. For me, hearing the broken record play over and over again makes me feel a bit hopeless. Saying something like "He has autism." or "He has _____." would give me a way to explain why my child acts the way he does. It shouldn't bother me when people look at my child with questions in their eyes, yet it does.

I can't explain why I feel the way I do. I feel hopeless in my situation with Luke, yet I have so much hope because of my God. How is it that I can feel two separate ways? Am I not a true Christian because I feel pain and I grieve over my son? Questions that will no longer matter once I reach heaven's gates flood my mind constantly. Ah, this human nature- it is joyful and painful.

Luke enters Pre-K in two weeks. I am anxious. He is my baby. He is my last born. I want to shelter him. I know, in reality, that I cannot shelter him forever. God bless parents of children with illness and/or disabilities. God bless the mothers who long for answers. I am thankful for the hope of heaven. My sons and daughters will be made whole in God's presence. I will be dancing and singing in the Hallelujah Choir.

Being a Parent

2010-07-23T08:48:00.000-07:00

Luke will be 3 on August 21st this year. Two days later, he will enter the ESE pre-k class where his brother and sisters go to school. How is it that the first three years of his life have passed so quickly? I think back to all the challenging times and all the times that God showed us who He really is. The first year of Luke's life was consumed with the realization that something was not quite right. My mother and I agreed that he was "neurologically young". Honestly, it felt like a nightmare that I couldn't wake up from. From a relatively young age, I always felt in my spirit that I would one day have a child like Luke. I began writing this blog because I desperately needed a way to work through my feelings. I needed a place to put my feelings down and walk away. This blog provided that for me.
During Luke's second year of life, I felt the need to know what was going on. We went from doctor to doctor, place to place, trying to find an answer. Many tests were done. The only conclusion was that you had an abnormal EEG. As a result, Luke was put on strong seizure medications. These medications made Luke seem like a zombie. His eyes were open. He moved a bit. He had no personality, though. It made it impossible for us to bond with him. Honestly, I went through deep depression. I was grieving for my child.
Shortly after Luke turned 2, we found out that he had not been having seizures. He spent a year of his life on medications that he didn't need. He was taken off of the medications and his life changed. He changed. He began sitting up and smiling and laughing. His personality began to develop. He began crawling and standing. He pulled up and reached for things he wanted. He began to explore his environment and play with different toys. He has come so far and his personality is so bright! So, I openly share what God has done is our lives. I do not think anything is a coincidence. Every good thing happens because of my God.
So as we are approaching his third birthday, I am still wanting answers. While Luke has come so far, it is still extremely evident that an autism diagnosis would be appropriate. The two doctors that Luke sees consistently have spent three year avoiding me- avoiding the questions. I do not think that a diagnosis of autism would be the end all, but I do think it is appropriate.
I have found many ways to work out my frustration, anger, guilt, and grief. I write. I have taken 4 classes towards my Master's Degree. I have had to take a break, for now. I have obtained a job working with pre-k kiddos with autism. I have reached out to other parents. I have volunteered at Kids for Camp in order to create a book to be used in classrooms. I have networked. So, I have some hard feelings to deal with, but I have chosen to do anything in my power to help others who are going through this.

Wow- I Don't Update Enough!

2010-06-29T19:52:00.000-07:00

Luke is enjoying his summer. He has started sleeping in the toddler setting of his bed. He is enjoying being outdoors and watching the trees. He also love to swim. What a change! He used to loath water, now he has to always touch it and play. I am so thankful for the growth. He is also eating a wider variety of foods. He ate his first peanut butter and jelly sandwich this past week while on the way to Waynesboro. He is chewing better and moving his food around his mouth with his tongue. His oral motor skills are improving. I give glory to God for all the strides Luke is making this summer. When I think about all of the positives that are occurring, I just can't help but totally know that God is in control. He should be glorified!

Luke received his new gait trainer a little over a month ago. He is not responding very well to it. He is in denial of the fact that his old gait trainer is gone and he has to deal with the change of a new one.

We will get him walking, though. It will just happen. Just as everything has been- we pray, we wait, we praise.

There are a few new challenges. I have spent quite a bit of time quietly observing my little guy. I watch his face, his head, his hands, his arms and legs, and his feet. I quietly listen to his little voice as he yells, says "Dadada!" or "Bababa!". I watch him as he turns his eyes to the ceiling and shakes his head side to side quickly and laughs. I watch as he flaps and waves his little hands when he gets excited. I watch his sweet little facial expressions that are uniquely Luke. He cuts his eyes over as he looks a suspicious person or item up and down. He fakes a smile when he is considering his options. He laughs out loud as he hears a loud sound. He panics when he falls and it hurts. I watch him as he falls asleep. Only in those moments he looks at me as if I am the only person in his world that matters. My heart melts.

I watch him become frustrated with his feet. I watch as his facial expression changes and he bites his hands because he is feeling stress. I experience the new biting behavior and realize that he is only expressing himself and he will need to be taught a replacement behavior. Most of the time, I watch my little one from a far and notice how much time he spends engaging in self-stimulatory behavior. My head tells me why you do this. You find pleasure in scratching walls and baskets. You like the way it feels when you move your head back and forth vigorously. My heart continues to wonder- What do you see? What do you hear? What do you feel when you reach your little hand out?

So, emotions just seem to take over. I am hopeful, yet I hold back. I don't want to be the one putting limits on you. In my eyes, you have caught the moon and brought it down for me to explore.

Emotions

2010-05-24T08:29:00.000-07:00

My emotions are kind of up and down right now. On one hand, Luke is making great progress. He is taking steps, becoming stronger, exploring his environment, and becoming more vocal. On the other hand, I am becoming worn out and frustrated with the lack of progress in other areas. His eating and meal time behaviors can get old really fast. He spits and chokes and coughs. By the time I am done feeding him, I have food all over me. Also, I know that he knows how to drink appropriately from a sippy cup, yet he always gets his almond milk all over himself. So, this blog is meant to give me an outlet for my frustrations, while helping other people understand how frustrating it can be for a mother with a child with disabilities.

I spend most of my time focusing on the miracles that occur with Luke- his walking, vocalizing, etc. There are times, though, when I must allow myself to write through my negative emotions in order to get over them and continue focusing on the positive. I find myself feeling anxious right now. We have started the process of enrolling Luke into a ESE Pre-K class at Berryhill Elementary. I have had a transition (meaning going from Early Steps into the Santa Rosa County Schools) meeting with Luke's Early Steps team. Luke was successful while being served in Early Steps. They helped him get into occupational therapy, speech therapy, and physical therapy while providing in-home services once a week. We talked about what my goals for Luke are now that he will be entering Pre-K. Some of the things I want him to learn are; (continuing) walking with a gait trainer, feeding himself with a spoon, attending to an adult in order to receive instruction, attending to pictures, books, and toys, manding (asking for items using sign language or a vocal), imitation skills (clap hands when adult claps hands), using pincher grasp to obtain small items (cheerios or other finger foods), and sitting at a table during meal time with appropriate sippy cup behavior.

All of things are going to take consistent work and follow through. He has learned to throw little temper tantrums in order to escape from what is being asked of him. His teacher will just have to push through it. I am so thankful that his teacher has agreed to work with him. I just know that we are going to see a lot of growth this coming school year (2010-2011)! We have an IEP (Individual Education Plan) meeting coming up on Friday. This is where I feel a bit of anxiety. I have sheltered Luke for almost three years now. It is almost like I was ready to tell the world that I have a son with a disability. I have accepted it, yet I just haven't been ready to share with people in education. Educators tend to look at everything with a critical eye. We pride ourselves in being able to point at a kids and say, "He has this..." or "He must be that...". Now, I am sitting on the other side of the table. Now, I see how destructive those behavior are. My child is going to be the one pointed at and discussed in the teacher's lounge. By the end of the school year, he may have a laundry list of disabilities (labels) tacked to him that will travel with him during his career as a student.

What an awful feeling this is. I have asked God to forgive me for any times I might have acted like that. Now, I look at things so differently. My heart is burdened for parents with children with disabilities. Their lives are a constant battle, yet they can see where God has moved. They have to constantly battle feelings of inadequacy, disappointment, and guilt. I am so thankful for my walk with the Lord. It is through Him that I find my strength to work through negative emotions and find the miracles in our everyday lives.

Luke Walking

2010-05-24T08:21:00.000-07:00

This is a picture of Luke while he is physical therapy. He is walking! He uses a gait trainer and his legs are getting stronger every day! He fusses a bit during PT, but he has come so far in the past year. A year ago, he wasn't even crawling! We were still working on sitting without assistance. Now, he is taking steps. The new goal is to strengthen his legs and work on stamina. He has taken 18 steps at a time and has walked down the hall in the therapy center. I am truly looking forward to the day when we receive our gait trainer and he can walk into church by himself. I give God the glory for how far Luke has come and I know that Luke will go even further than we can imagine!

A Hilarious Moment!!!

2010-04-23T08:35:00.000-07:00

This morning, Luke was complaining rather loudly about the fact that it was taking so long for his oatmeal to cool off. After several minutes of this, I told him to "Put a sock in it!". A couple of minutes later, he crawled up to me with a pair of socks in his mouth! I couldn't help but laugh at him!!! It was so funny. He even posed for me with the socks in his mouth while I took a couple pictures! He definitely has a great personality!! :)

Good News!

2010-04-15T16:31:00.000-07:00

It looks like Luke is going to be able to be a Berryhill Bear next year! God is giving us favor!!!!!!

Adenoidectomy

2010-04-05T07:33:00.000-07:00

Luke had his adenoidectomy last Thursday. It was scary for me, I must admit. I just hate it when I know my kids are in pain. He did so well, though. In this picture, Luke had just been put into the recovery room.

After a couple hours in the recovery room, we were able to take Luke home. He wanted to be held for almost two days straight. I was finally able to put him down in the recliner for 20 minutes at a time on day two.

Since then, he has been running about a 101 fever and has been a bit grumpy, but he is already responding differently. When I call his name, he looks at me. Yesterday in Sunday School, I was holding Luke and he actually reached out with arms and body to his daddy. He wanted Marty! This is huge for Luke... He hardly every does this!

So, I am really happy with how things are going for Luke. We also found out that insurance will cover his gate trainer (walker for children with disabilities)! I am looking forward to the day when Luke can walk into the doors of the church and move into a room with kids closer to his own age in nursery. God is good!

Discovering What Love Truly Is and An Update

2010-03-11T14:38:00.001-08:00

WHAT LOVE IS: My love for Luke gets stronger every day. Bonding with Luke has been a different experience. The moment my girls were born, I felt a strong bond with them. Luke's birth was more traumatic. I think I even went through some sort of depression after his birth. So, I did not automatically bond. I knew that I loved him and I was committed to being the best mother I could be to him. I just didn't have that strong connection with him like I had with Sydney and Gracie.

Now that he is almost 31 months old, I feel a closeness with him that is unlike anything I have ever experienced. He will cuddle with me now and he will even reach up for me to pick him up. Those moments are the best! So, this journey with Luke has taught me so much about life. I am so grateful for the experience :)

UPDATE: Luke has really grown lately. He is now almost 26lbs and he will stand in a gait trainer for 15 minutes without help. He is learning to request items and actions also. This requesting is called "manding". When he mands, he signs for what he wants. He now mands for "up". We are working on "eat" and "drink" also. He also tacts "Baby". Tacting is just another word for labeling. I have a book with a baby on the front cover. I will say to him, "Luke, touch the baby". He will look at the baby and put his hand on it. This summer we are going to work on teaching Luke to use a spoon to feed himself. I am so happy for him. He is making good decisions that are leading to growth.

He is also doing something else that is new and can be viewed as good and bad- He is throwing fits! He is learning to assert himself. He will sit and rock back and forth and throw his head back and yell when he doesn't get what he wants. He also throws fits when we push him to do something that he doesn't want to do at that moment. So, it is good that he is asserting himself. Now, we just have to treat him like the rest of our kids and not let him get away with this behavior :)

I no longer say that I am proud of my kids. I now say that I am happy for them. If I say that I am proud, they may think that when I have to discipline them, I am no longer proud. When I say I am happy for them, it puts the ball of responsibility in their court. When they make good decisions, I am happy :)

Getting the Ball Rolling

2010-02-19T08:39:00.000-08:00

This picture was taken by Mimi yesterday during Luke's therapy. Look how well he is doing! I am so happy for him! He fussed the entire time, but he is strengthening his lower body.

So, my mother, Marty, and I are getting the ball rolling for Luke to be enrolled in school next year. We are going to observe in some local classrooms and set up meeting, so we can be as informed as possible when making choices.

It is really interesting. Enrolling a child with special needs in a school is a totally different beast than enrolling a typical child in school. We are already starting the process now, in February, so we can set up IEP (individual education plan) meetings in May, so he can attend school on the first day of school in the fall this year. This process is taking a lot of mental energy as well as taking a good amount of physical energy between emails, phone calls, observations, etc.

I have been on the other side before. I have attended IEP meetings as a teacher. Now, I am having to go through this process as a parent. I must admit that it is difficult. My child, whom I have protected for the past three years, is now going to be exposed to life outside of my protective shadow. It is scary for me. I know it is not scary for him, but I just don't want anything negative to happen to him. Many people have opinions of Luke that are totally wrong. They look at him and think that he has no cognition (thought, ability to think and reason). They don't see what I see. They also don't expect of him what I expect of him. So, it scares me.

Going through this process also forces me to forgive some people who have hurt me deeply in my professional experience. Will they treat Luke as they had treated me? I pray not, but I am unsure. My plan is to advocate for Luke, while also keeping in mind what the school system is capable of. I will not be the type of parent that every teacher dreads, but I will be the kind of parent that keeps people accountable for their actions.

This is just kind of difficult... and the difficulties are starting to effect me in weird ways.

Yet Another Hospital Visit

2010-02-02T16:05:00.000-08:00

We had the opportunity to visit the hospital with Luke for three days again this year. Every year, since his birth, we have made a trip to the hospital. Once for apnea issues, once for testing, and the third time for lethargy (not at all normal for Luke).

On Saturday January 23rd, we went to the local ER. He was really lethargic, he wasn't eating.... he was just acting like a blob. The docs had no idea, so some testing was done. First, blood work (for RSV), a urine sample, and starting fluids. Next a chest x-ray. Then, a cat-scan. Last, and biggest of all, a spinal tap (checking for meningitis). I freaked out at this point. All tests were negative, so we were sent to Sacred Heart so Luke could be "observed". We stayed for three days and were sent home with only one answer. His adnoids are too large so they will be referring him to an ENT. We actually have more questions now than we did before going to the hospital. It was so emotionally draining.

Yay Luke! You're Standing!

2010-01-20T13:49:00.000-08:00

On Monday, January 18th, 2009 Luke decided to pull up on the couch and stand up all by himself. His sippy cup was on the couch and he couldn't reach it when he got on his knees, so he used his upper body and got to his feet to get it.

I walked into the room and there he was, on his feet! I cried and shouted for joy and praised God. This one thing, this miracle, gave me hope. It brought me so much joy!

Thank you Lord for my unexpected day-off miracle!!!!!

New Blogs

2010-01-16T11:52:00.000-08:00

I have two new blogs. Please go visit. The first one is our family stories blog at http://eagleeyedaniel6.blogspot.com. The second is a blog I started to post information I research- http://informationcrusade.blogspot.com. I am currently researching diet related issues. Enjoy!

Ponderings...

2010-01-05T18:23:00.001-08:00

Yes, I know, weird title... but it fit :)

Pondering #1: I wonder if my husband is angry with me for having a baby with a disability. Does he blame me? Is he angry with me? Is that why he seems to not like me most of the time? I feel like what happened to Luke was my fault. Were the showers I took when I was pregnant too hot? Did it cause him to have seizures in womb? Is that why they say he has a brain injury? Did I not eat enough? Did the virus I had when pregnant with him cause his disability? I know, worrying about this stuff is stupid, but It is what I think about.

Pondering #2: Luke is God's gift to me. All of my children are the most special kind of gift I could ever receive.

Pondering #3: I wonder if my dog is ok out in the yard, by herself, when it is 20 degrees outside... we left the dog during our North Carolina/Georgia trip.

Pondering #4: What goes through Luke's head? What is his level of intelligence? What does he feel? Does he have hidden health issues? What if they are serious? Who do I need to call? Who does his pediatrician need to refer Luke to?

Pondering #5: He has a stomach virus and refuses to eat. Will he lose weight? I can't bring him back to the doctor if he has lost weight. What can I give him to gain the weight back?

Pondering #6: How awesome is my God!!! I just want to worship Him!!! Heaven is going to be awesome! Luke will walk and talk and praise God right beside me, my father, my brother, and my two grandfathers.

Pondering #7: Will Marty and I be together in heaven? How does he really feel about me? 7 years seems like a long time to blend a family!

Pondering #8: Am I a good mother? Do my children love me? Does my husband? Am I a good wife?

Pondering #9: What can I do for God today? What can I do in my church? What can I do to bless others? God answered all of these questions today :)

I would be nothing without God. He is my all in all!!!!

The Crusade for Calories

2010-01-01T17:35:00.000-08:00

So, the newest struggle we have had to deal with lately is that Luke is not gaining weight and is really not growing like he should. He has been 22 pounds for the past 6 months. His 1 year old cousin weighs about that much. So, we have been trying to figure out how to add more calories to his diet. He is still on the gluten free/dairy free diet. Adding those two food groups would definitely add calories, but at what cost? Would he then be sick all the time? Would being snotty and yuck all the time cause him to stop making progress? So, for now, I am making every meal count- packing as many calories as possible in one bowl.

We still puree. He eats better when we do that. He doesn't choke and get frustrated. It is really hard to vary foods when you have to puree everything. I am concerned that his doctor is going to think we are starving him. So many of these little issues that come with having a child with a disability almost look like parenting problems instead of what they really are. It is trying to meet needs that are completely different than that of a typically developing toddler.

I guess I am realizing that my life with my child with a disability is totally different. It will always be completely different. We will see more doctors and therapists than other people will see in their lifetimes. We will have to go through therapies and Individual Education Plans (IEP's) and BIP's (Behavior Intervention Plans). We will have to constantly try to solve the mysteries that lie within our son.

I would not trade it for the world!!!!

The Untitled One

2009-12-18T08:59:00.000-08:00

I love this picture of my little ones. They are so precious. I have really gotten in touch with how much I adore my children and how I am so thankful to have them in my life. Each one has brought so many blessings into my life. I am really emotional this Christmas. I am really trying to treasure every sweet moment. I am missing my father. I am missing old friends. I wish that I could share some of these moments with my father or my grandmother who lives in Tampa.
I am thankful to have my mother, second father, and grandmother (among others) here in Milton with me. It would be so hard if they were not here. I do miss my friends and family in Tampa and in Texas, though.
I wish I had someone I could really talk to. Someone who would listen to my fears and frustrations and who would still love me and support me. I have been put into some situations lately where another mother is going through some tough things with her child. I am glad to be friends with this mother. I want to provide some comfort and encouragement. The frustration I have is that she is getting so much support from others. I really have not had much friend support with Luke. My mother is there for me, but the support is different. I am so thankful for Mom, but I wish that some of the people who call themselves friends of mine would provide some prayer and support.
I took Luke to the doctor two days ago and found out that he has not gained any weight for over 6 months and has not grown like he should be growing. I asked this doctor if I should be worried about this and she said I should definitely be worried. So, we get to go see another doctor to figure out why he isn't growing. I feel like it is all my fault. I get so frustrated! He can't eat table foods. He even gets choked up on soft chunks, so I have to puree everything. His body doesn't react correctly to dairy or wheat products, so his diet is really restrictive. Of course, he is not getting the calories he needs. He can't eat the foods with the bulk of the calories. Is my son ever going to show growth in this area?
I had a dream a week ago. It was terrifying. I need to open up. I feel as if I am trapped in a box.

Memories

2009-12-04T05:09:00.000-08:00

This picture was from almost 2 years ago. I have spent some time looking at pictures from the past 4 years (pictures taken after meeting Marty). Luke was a beautiful baby- he still is. His skin is so pretty and his hair is so thick and curly. I strain to remember when the girls were babies. I enjoyed them so much. I loved watching them learn how to crawl, play with their toys, learn how to pull up and walk. I expected those things to happen with the girls and so, when they did happen, I wasn't surprised. I was happy, but I didn't really celebrate the milestones.

With Luke it is different. When he rolled over, I celebrated. When he started army crawling, I counted it as a victory. When he began crawling, I took videos and pictures. My heart longs for him to hit other milestones. I so badly want to hear him talk. My heart longs to hear him say, "Mommy". I look forward to the day when he will walk.

Sometimes, it is easy to become discouraged. The days when I don't see growth make me question. Lately, I haven't seen growth. I have actually seen some regression. He is beginning to choke on his food more. He is constantly congested. He seems disconnected lately. I hate it. I feel like he has to fight to grow. I feel like I have to fight to see him grow. We cannot afford lost time. He needs certain therapies. I am having to fight to get him into them.

The more I am finding out and learning about the world of disabilities, I am becoming more resolved to make a difference. Parents and their children with disabilities need many people to advocate for them. I am pushing through hurt and worry and choosing to position myself where I can make a difference. Oh, that God would open doors for me to help others!

Research and Luke's Little Personality

2009-11-16T09:44:00.000-08:00

I have recently obtained a graduate research assistant position at the Autism Center at Sacred Heart Hospital. I am really enjoying the job. I assist a lady who is so bright and so experienced. I just love being around her and talking with her about the research that has recently come out about autism.

Did you know that there are over 6,000 syndromes? Yep, there are! Finding a syndrome that matches what Luke has going on is like finding a needle in a haystack. It's insane. Researching syndromes has really make me think about all the challenges that people are going through on a daily basis. Some of these syndromes are fatal, some syndromes cause major life-altering physical and mental problems, and others can just cause minor issues that doesn't effect the person's way of life. Dealing with a "not-yet-identified" syndrome is like a great mystery that may take years to solve. There is part of me that wants to know. Then, there is another part that just wants to let it go.

So, totally off subject- Luke's little personality is beginning to shine! He laughs and smiles. He is actually beginning to accert himself. He is beginning to attention seek and he is beginning to express himself when he is not happy. He is making awesome progress. We have been working on potty training a bit. The picture above is Luke telling me off about being on the potty :) He is starting to eat some cut up table foods like hot dogs, cooked carrots and peas, cooked apple chunks, and pancakes (yes, I know pancakes have gluten). I have began to introduce some gluten into his diet. I allow him to eat it one meal a week. It is an experiment. Research has shown that a gluten-free diet does not positively effect a child with autism. I actually think that the research I have read is correct, in a way. The researched was aimed at disproving the theory that a certain diet can effect children with autism. The research, indeed, proved that it does not directly effect the behavior. I have a different theory, though. I believe that certain people do not react well to certain foods. This pertains to any individual, not just an individual with a disability. In normal circumstances, the body takes each ingredient in the food we eat and processes it to give us energy among other things. The body uses the starches, sugars, proteins, etc to run itself. The people whose bodies do not process nutrients correctly, begin feeling the side effects of their body rejecting the ingredients. These side effects can trigger problem behaviors as well as many other health related issues. For instance, I notice that when Luke eats foods containing gluten he seems a bit more disconnected, grumpy, and he begins to produce mucus. The mucus causes congestion. The congestion may be the cause of the grumpies. Every system is connected. Even if you have been tested for allergies and the tests came back negative, your body may still be "sensitive" to certain foods. So, if you're feeling fatiqued, moody, sick all the time... begin looking at the foods you are eating.

The research I have been reading has really opened my eyes. It has also made me start thinking about what I want to do my Master's research on. Life is good :)

A Sign Whose Presence Ticked Me Off

2009-10-30T15:49:00.000-07:00

So, as I was traveling across the Florida Panhandle with my husband and Luke when I came across this sign. It really rubbed me the wrong way. Two questions; 1. Why in the heck are they announcing this to the world?, 2. Do the parents of this child think that it is MY responsibility to watch out for THEIR child? I have children and it is MY responsibility to ensure their safety. I do not try to make other people responsible for MY responsibilities.

Another thing... the sign should read "Caution Child With Autism", not "Caution Autistic Child". The child is a person first. The disability comes second. Not autistic child, but child with autism. Ugh!

Thought Provoking

2009-10-28T08:13:00.000-07:00

I saw an old friend the other day at my grandmother's place. My old friend looked good. She has two children. One is 4 and is autistic. The other is around 3, I think. She had a chance to meet Luke. She knelt down by his stroller and talked to him like he was a normal two year old. Most people do this, but I always feel awkward. With her, I didn't. I knew that she has been through the same thing. She asked if Luke was ok with being touched. Her son was comfortable with touch. I told her that he is comfortable with touch. She was good with Luke. It was neat to see.

My son is extraordinary. He smiles and likes to be touched. He will cuddle with me or Marty. Last night, I was holding him while I was sitting on the couch. Luke pulled up on my shoulders and pressed his face against mine. He was smiling and laughing and babbling. Times like those are "Jaime Therapy". Something my heart and soul needs.

I cannot imagine how mothers feel when they give birth to a child who does not like their touch. It is innate for a mother to touch her child and for the child to find comfort and healing in this. I have heard many stories where a child has been deathly ill and the mother has held the child, bare skin to bare skin and this provided healing for the child. I guess I have never really given Luke the chance to reject my touch. I do not push him beyond his boundaries, yet I always take advantage of his good moods. He hated showers, yet I always took time to bath with him. I held him, bare skin to bare skin. He would fuss for a while, but find comfort in my arms. He hated the water, but my presence helped him push himself beyond his sensory issues.

I will admit that Luke spends a lot of time playing, by himself, on the floor. A typical child would demand attention and therefor receive attention. Luke does not demand it, and does not get as much attention as the other children in our family. Sometimes guilt creeps in, but I do what I can to not allow it to stay. It doesn't change anything. Luke is different. I make sure his basic needs are met, but I have to get things done in my house. None of my kids get an extreme amount of attention. I, more or less, expect them to entertain themselves. Right or wrong, it's what has to be done in a family of 6. It's amazing how we all fit into our place and space in our family. Even Luke fits. Our family has a lot of work to do, but we are blessed to have each other. Every child and each adult is worth the work.

An Overwhelming Need

2009-10-08T16:55:00.000-07:00

I am noticing something about myself- I have an overwhelming need to share my story about Luke with other people. I need to share with other parents of children with disabilities. I keep finding ways to do this. Today, at work, I spoke with a lady around my age who is volunteering at my school. Every day I find a way to talk about it. I have been through so much in the past couple of years. It has been a mix of sweet and sour experiences.

What I am about to share is very personal, but it is part of my journey. I married my husband on September 30, 2006. I had two little girls from my previous marriage. My husband had a boy from his previous marriage. We were happy with the three we had. We did not want any more children. I was on birth control and my husband planned to have a vasectomy in late December. As fate would have it, or as part of God's plan, I conceived Luke a couple weeks before Marty had his vasectomy. In late December, I knew I was pregnant. I had all day sickness and many other pregnancy related symptoms. I went to the doctor when I was a week late. They did a blood test and told me that it was negative. A week later, I had a period. So, I accepted the fact that I wasn't pregnant with joy. 4 weeks later, I was still feeling sick along with the other things, so I went back to the doctor thinking I was going crazy. They did a urine test and told me that I was pregnant. I broke down into tears. This was not part of the plan.

I continued having periods for 3 months. Then, during month 3 I woke up in a puddle of blood. I was in pain, so we went to the emergency room. I was never seen. The next morning I had an ultrasound and all was well with Luke. No one knows why bled. In the 8th month of pregnancy I began running out of amniotic fluid. The ultrasound I had on the afternoon of the 21st of August 2007 proved that I needed to go right to the hospital to have a c-section. Luke was breech. He was feet first and his umbilical cord was right underneath his little toes. He had to be delivered by c-section.

The pregnancy and the delivery was traumatic for me. There was so much stress. So, Luke was delivered. He was so cute. He looked like a little alien. Just like his mommy :) The first week after his birth was hard. There were three other kids in the house. My in-laws were in town. No one seemed to really be paying attention to my needs. I came home from the hospital running a 104 degree fever and in severe pain. I was left alone in the house with Luke and the two girls. I finally called my mother to come get the girls. I couldn't handle it. I was tired and in pain and feeling quite stressed because people were more concerned about a certain two people in my house than about me or Baby Luke. My mom picked up the girls. I was so thankful. I couldn't take care of them at the moment. Even with all that I was going through, I ended up being told off because I sent the girls away. It was weird and traumatic. It has been two years and yet I still hurt over the situation. I felt so small and meaningless.

A couple months later, I began realizing that Luke was "neurologically young". I felt, in the pit of my stomach, that something wasn't right. At the age of 5 months, Luke began the journey of testing, doctor's appointments, more testing, and more doctor's appointments.

I love my son. I am passionate about my son. We, as a family, are finally getting to point of understanding, compassion, and kindness that we should have been when I had Luke. In writing about this, I am trying to forgive. I am trying to move past two years of trauma. I love my family- my husband, kids, parents, in-laws, etc. But I can acknowledge that I have been hurt.

A Rare Moment of Open Honesty

2009-09-29T03:54:00.001-07:00

I have been following a blog of a woman whose baby has been diagnosed with Trisomy 13 prenatally. This is a fatal condition where "conditions are not favorable for life" outside the womb. She is having to face the fact that her baby will most likely die after she gives birth to him. She, and her husband, are facing this with grace and faith. It is so amazing to see people going through these situations. They have so much faith. I am absolutely in awe of these how they are dealing with everything.

She has a video on her blog that shows a husband and wife going through the same thing. In the video, the baby is born and five days later the baby dies. It is a very real, very personal video. I feel priveledged in being able to view it. After the kids went to bed last night I asked Marty to watch it with me. Marty was a little hesitant, at first, but the vidoe ended up really bringing out some emotion in him. I told Marty that viewing the video really allowed me to put some things in my life in perspective. He, then, looked at me with tears in his eyes and told me how he feels so blessed to have Luke in his life. He said that he knows that God made Luke and Luke is perfect. He admitted that he lives a blessed life and he is so thankful for it.

It is so wonderful to have a moment like that with my husband. It does not happen often. I am just so thankful for the moment because it helped me see what is really going on inside my husband.

Smiles and Acknowledgments

2009-09-27T18:50:00.000-07:00

Luke is crawling now!!! He is actually getting on hands and knees and crawling. It is such a huge victory! I want Luke to take his development steps in order, even if he is late in taking them. I want him to crawl before someone tries to get him to walk. I just think that it is important for a baby to go through the steps God intended in development. Crawling helps the baby's brain develop.

I am just so proud of Luke. A lady at my church came up to me and said that the nursery workers at church are just so amazed with the progress he has made since being off the seizure meds. He has actually been making some social progress at the church. Today, he crawled up to a couple of the kids in his class and tried to play with them.

To me, knowing that Luke is moving forward is so comforting. So many of the worries and fears I had seem so petty now. I have started reading some other blogs of people who are going through so much more than I. Reading the blogs has given me a different perspective. I am so grateful for Luke. He is such an amazing little boy and there is no doubt in my mind that there is a reason he was born. I totally understand that life with a child with Cerebral Palsy and a "unknown" syndrome with autistic features is not always going to be easy, but I am just so thankful to have him.

A Different Perspective

2009-09-07T17:59:00.000-07:00

I wrote this last year when I was teaching first grade at Bennett Russell Elementary School...

Having a son like Luke has caused me to think about so many things. How will he be perceived? What will his experience in school be like? What will be his diagnosis? What will my future be like with a son with disabilitiies?In thinking about my own experience, I begin to think about other children who struggle in school, whether they have a disability or not. There are a couple students in my class who struggle. I find myself wondering how that must be for them. They are so sweet and so young to already have struggled so much academically. Sometimes, teachers can view these kind of students as almost a heavy weight of sorts. These students tend to be a bit more high maintenance. On the surface, they seem to have no motivation for learning, and because of this they can have behavior issues. Sometimes these students are viewed as lazy and as goof-offs. I have begun to look deeper than the surface with these students.
Imagine for a moment that your husband or wife took you to a place where you were made to play an instrument like the violin or piano. You have no idea how to play, and you are being told that you HAVE to play. When you ask why, The people just tell you "because I said so". They put a piece of music in front of you, give you the instrument, and expect you to play right then and there. You've never really wanted to play the instrument and have trouble finding a reason to play. So, you struggle because you can't read music, the instrument is just plain confusing, and you really don't have a good reason to try. You are frustrated and the people are frustrated with you. How aweful that would feel! Then, you begin to feel bad about yourself, and to make matters worse, you are put with the group just like you who have no real motivation and are struggling and frustrated. You are made to play that instrument during your 90 minute instrument block. You have an instrumental intervention specialist, and you go to a 20 minute instrument intervention group every day. All the while, no one has helped you understand the reasoning for learning to play in the first place.
You see, all of the best instrumentalists and musicians could teach you, but until you begin to motivate yourself, you will never truly learn how to play.It is the same with these students. Until you prove to them that it is worth it TO THEM to learn, they will never reach their full potential. Oh, they may learn, but may only be learning to get by. Instead, let's show them that they can learn and that the only limits on them is the limits they put on themselves.

The First Diagnosis

2009-09-02T14:29:00.000-07:00

Today's doctor appointment went well. We finally have a diagnosis-

"A not-yet-identified syndrome with autistic features & Cerebral Palsy"

The diagnosis is pretty vague, but it will give up the ability to sign up for the Med Waiver Program when he turns 3 and we will be able to try to get SSI. That's all I wanted. I want Luke to be able to receive a few specific therapies when he gets a bit older. This diagnosis will help him get these services.

I honestly feel exhausted. I have much more to write, but really little energy to write it with. So, I will save it for another time. Finally- a peace of sorts.

Immunizations and Today's Doctors Appointment

2009-09-02T07:11:00.001-07:00

Prior to last week, Luke has not had any immunizations. I have done some research supporting immunizations as well as some research not supporting giving immunizations to children. When Luke was born, I decided that I did not want to take chances with immunizations.

He turned two a couple weeks ago. I know that he will be going to a pre-k program in two years, so (with much reservation) I took him to get his first immunization. During the appointment I expressed that I was worried about it because I didn't want to ruin the good thing we had going. Luke spent the first 15 months or so of his life chronically sick. He seemed to always be congested and always seemed to have problems breathing. After beginning the gluten free and dairy free diet and giving him supplements, Luke's health drastically improved. He has not been sick since early spring this year (2009). I was worried that giving an immunization would cause his health to regress. Even with my reservations, I chose to allow him to receive the first Hep B shot.

It has been less than a week and he is sick. He is congested and has been running a fever for two days. So, is this just a coincidence? Would he have gotten sick anyway? or... was the immunization the cause of the sickness? I don't believe that the immunization caused the specific illness, but I do believe that it caused Luke's immune system to struggle, therefor, his body could not fight the germ that was introduced this past week. So, now, Luke is feeling yuck, I am feeling yuck, and so is Sydney.

I don't think I have posted my full explanation of beliefs about immunizations. I may have to do that soon.

I have an appointment with Luke's doctor today to talk about diagnosis. I am feeling a bit stressed about. It's a long story as to why I am stressed. I do not wish to share the story. I hope it goes well... I really wish my husband were going with me.

The Answer That Leads To So Many More Questions

2009-08-19T09:53:00.000-07:00

Luke scored high on the ESAC. This means that he definitely qualifies for the autism diagnosis. There are two reasons why he scored high on the ESAC; 1. The test is for children who are at the chronological age of 12-36 months and Luke is that age, but he is significantly delayed and acts more like a 6-9 month old baby, 2. He has definite sensory issues as well as many autistic like behaviors.

The autism society's theme, which is puzzle pieces, truly fits what is going on with Luke. Think of it this way- The answer to what is going on with Luke is the big picture, a fully put together puzzle, if you will. We only have a couple pieces of the puzzle put in place and it is a puzzle with, at least, 500 pieces (if not more). We know what it isn't- He is not deaf, blind, or mute. He does not have a life-threatening condition, as far as we know. We speculate over a couple different diagnosis'- autism and cerebral palsy. Autism is more of the academic diagnosis for Luke, while Cerebral Palsy is more a medical diagnosis. So, we know that Luke fits these two diagnosis', yet autism and cerebral palsy leave many huge questions-

-What caused these issues? Immunization maybe given at birth? Medical malpractice? A virus?
-What causes his yellow skin?
-What about the small hole in his heart? Will that heal itself?
-What is his true cognitive ability?
-What is he seeing? How is he prossessing visual information? How is he processing auditory information?
-What medical issues does he have that we just haven't discovered?

It is going to take many years to gather the right puzzle pieces in order to see the full picture more clearly. For now, I will just have to go to each doctor appointment with ammunition ready.

CARD and the ESAC

2009-08-18T10:03:00.000-07:00

Last week on Tuesday, a lady with CARD came to observe and evaluate Luke. She said that Luke should definitely qualify for the diagnosis of ASD (autism spectrum disorder). Of course, she does not have the authority to give a diagnosis, so she will write a report and send it to Luke's doctors. She spent two hours with us last Tuesday and plans to spend about 3 hours with us today. She wants to make sure that she is thorough and can make good recommendations based on 5 hours of observation and completing the ESAC. I really appreciate the fact that she is moving slowly and methodically. She seems like a really good lady. She has a daughter who has been diagnosed with autism, but also has other things going on. She knows how we feel.

We all know that autism is only part of what Luke has going on. It's only part of the picture. We know that there may be a Cerebral Palsy diagnosis.There is also something genetic going on. It may takes years to find out the specific information about it. We also know that there could be some other health issues. Carol is going to give us a list of suggestions to talk to Luke's pediatrician during his well-child visit. I will update the blog again after our visit with Carol today.

Baby Showers

2009-08-09T18:45:00.000-07:00

I have been to at least 10 baby showers this year. Everyone is having babies. I have now realized that baby showers bother me a bit emotionally. Don't get me wrong, I am so happy for the ladies who have had or are having babies this year. I know they are feeling great joy. I remember what it was like. I just find myself getting upset after these events. I told my mom this today. She seemed shocked. It's ok. Luke is a great joy in my life, but he also a traumatic event in my life. This is going to sound really bad to people who do not have a child or children with disabilities. It is how I feel, though. It is traumatic to me to know that I will never have the same kind of relationship with him that other mothers have with their sons. It is truly sad to me. I have an interesting relationship with Luke. Sometimes, I know that he knows me. Other times, he barely seems to care about my existance. I feel powerless. I feel not needed, yet I know that I am needed.
It is a constant fight between my optimism and my fears and pain. It is something I go through in my head daily. Then, I feel guilty for even going through it. There is no talking myself out of these feelings, though. I have tried it. So, if you are one of the ladies whose baby shower I have attended this year, please do not feel sorry for me. Please do not feel awkward around me. I may have some pain in my life, but I do count it all joy. This is something I was meant to do. I was meant to be Luke's mom. I was meant to go through this so I might understand what other mothers of children with disabilities have gone through and are going through. Yes, I do acknowledge my pain. I do acknowledge my fear, but neither my pain or fears are running my life. I have faith... even without sight.

Updates and Cool Stuff

2009-08-06T09:01:00.000-07:00

Luke is doing really well! He has started crawling on elbows and knees. He's pulling up on his knees. I am so glad that he doesn't take the seizure medicine anymore.

Logan is going into 2nd Grade. Sydney's going into 1st grade and Gracie's going into Kindergarten. I can't believe how fast all four of my children are growing. School starts in a couple weeks and it has gotten me thinking about what I want for Luke this next school year. I want him to receive therapies that are more tailored to his communication delays. He gets PT, OT, and Speech, but the speech therapies do not provide him with a way to communicate his needs. I want him to learn some signs. So, he could tell me if he wants milk or water, or if he wants food or if he wants a specific toy.

This is where the diagnosis comes in. He cannot receive those tailorized services without an autism related diagnosis. So, I met with his neurologist who says that all of his genetic tests have come back normal and it may takes years (and a lot of money and traveling) to figure out what syndrome Luke has. We don't have the money to travel the world trying to figure it out. He told us that it isn't life threatening, so we could wait. I then asked him why no one has talked to me about autism. He acted shocked. I read him my list of reasons I believe Luke has autism and he finally agreed. He would not diagnose, though.

This month he will have his well-child check-up and I am going to bring my list to his pediatrician. We are having to take baby steps, but at least we are moving forward!

Other exciting family news-
Sydney learned how to ride her bike without training wheels this past weekend. She also learned how to tie her shoes. I got a part time ESOL position in Escambia county and will be going back to school this fall. I will be pursuing my Master's Degree.

Missing Luke

2009-07-27T13:36:00.000-07:00

After work Thursday, I left with my two girls and my mom and dad to go Tampa. The reason for the trip was to visit with family and go to my cousin's wedding. My husband, Luke, and Logan went to Georgia to visit his family. I enjoyed my trip to Tampa. I needed that time with my family. Marty enjoyed his trip because he needed time with his family. It has now been 5 days since I last saw Luke, and I am missing him terribly. The girls and I are back home and the boys should be coming in during the next few hours.

This is the longest time I have ever been away from Luke. I miss him. It has given me the opportunity to look at a lot of things by taking a step back. It has helped me gain strength.

The ESAC

2009-07-11T17:01:00.000-07:00

I received a call from a lady with CARD (the Center for Autism and Related Disabilities) the other day. Luke's Early Steps (a local early intervention program) teacher had refered him to be evaluated by the lady. She is going to do the ESAC (the Early Screening for Autism and Communication Disorders) with him. She will come a couple of afternoons for a couple of hours. She will ask questions and go through the screening. I am really excited about this. I feel like we are moving in the right direction.

While Cerebral Palsy is a fitting diagnosis, I believe that Autism is what Luke really has. I have gotten so frustrated with his doctors. His pediatrician and his neurologist have children with autism, but they refuse to even talk with me about autism. His pediatrician had a hard time dealing with her son's autism diagnosis. To this day, she still thinks he has a syndrome, but really disagrees with the autism label. When I take Luke to see her, she dances around the autism subject. She will admit that he has "autistic behaviors", but will not diagnose him with autism. His neurologist will not even talk to me about it. So, if he has "autistic behaviors", wouldn't that be good enough for an autism diagnosis? Then, he would be able to received specialized services for the disability.

So, he turns two on August 21st this year. He has an appointment with his pediatrician and his neurologist. I am going to those appointments with guns blazing. We'll have the ESAC evaluation paperwork. I am also going to be sending in a video of Luke to both doctors. I am done dancing.

The following are the reasons I believe autism is the correct diagnosis-
1. He makes little to no eye contact.
2. He flaps
3. He self stems (ie; tapping toys against his teeth, tapping his teeth against hard surfaces)
4. He is developmentally delayed (which could mean other disabilities also)
5. He does not talk, yet he screams
6. He stems vocally (mmmm sounds)
7. He usually wants to be left alone (he does not seek out social interaction)
8. He likes fans and lights (really all things that are bright and spin)
9. He engages in repetitive play (pushes the same button hundreds of times, does the same thing over and over again, etc.)
10. He is hypotonic (low muscle tone)- This could be genetic. I am not Ms. Toned Muscle myself.

There are probably some other things, but come on! I mean, really! Autism should at least be on the table as a diagnosis.

Pure Happiness

2009-07-08T16:24:00.000-07:00

I have gotten to spend most of the evening alone with Luke. It has been refreshing. Our afternoon together started off with a surprise-

I picked up Luke from Mimi and PapPaw. When I walked in the door, Luke was playing in his "gym". His "gym" is his room at Mimi and PapPaw's house. They have all his toys on the floor so he can play with them. I went into the livingroom, which is down the hall and across the kitchen from his gym. I talked to Mom and Dad for a while and then I thought I heard Luke's little voice in the hall. I got up to look... He was crawling towards me! He heard my voice and wanted me. When I picked him up he screamed and smiled. He got so excited.

So, I drove him home and fed him dinner. I have been on the floor with him for a while. I know not to force it with him. He doesn't like to be crowded. I just let him be, and he crawled up to me and snuggled my leg.

I celebrate every little victory. The little things are HUGE to me! Yeah Luke!!!!

The Little Boy Who is Teaching Me About My Son

2009-06-29T18:36:00.000-07:00

I have been working closely with a little 3 year old boy who is autistic for the past week or so. Knowing him has changed my life. He is a tiny, brown hair little boy with pale skin. He talks a little bit. He can name some animals and he can say "No!". He came to me not knowing how to request something that he wants. He would take my hand and lead me to the object of his desire, but he could not request it verbally or with signs. I learned quite quickly that he liked to squeeze things, especially when he was frustrated. For example, if someone wouldn't give him what he wanted, he would pinch. If he was feeling frustrated with me, he would find the nearest piece of my skin and squeeze. I quickly found a squishy ball to replace my skin :)

This little boy loves pressure. He loves to press his face against me. He loves hugs. He loves to be squeezed when he hugs. I have noticed that Luke likes the same things. So, I went home and hugged Luke. I squeezed him tight and said, "Mommy loves Luke". His reaction was priceless. He smiled and laughed and squeezed me back. The little boy I am working with has taught me how to bond with my son.

I love each of the four boys that I am working with. They have such a hard road ahead of them, but the right teachers can make all the difference. I am hoping that I will have as big of an impact on them as they have had (and will continue to have) on me. They are helping me face the reality of having a son with a disability.

Sippy Cup Victory!

2009-06-27T19:02:00.000-07:00

I have finally found a sippy cup that Luke will drink from!!!!! So, no more bottles! I was bound and determined to get him to the place that he would drink from a sippy cup by his 2nd birthday. Luke beat my deadline. I want people to view him as a two year old and not a baby baby. Marty says I shouldn't worry about what others think, but you know what, I do! I am sorry, but I do care what others think. I do not want to be viewed in the wrong light. I do not want my children to be viewed in the wrong light either. IT MATTERS!

Refreshed

2009-06-26T19:42:00.001-07:00

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. :)

Not Forgotten

2009-06-25T19:05:00.000-07:00

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.

Total Awesomeness!

2009-06-22T18:25:00.000-07:00

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.

Tests that Led to More Questions

2009-06-15T18:01:00.000-07:00

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~

We're Beginning to Talk About a Diagnosis

2009-06-10T06:21:00.000-07:00

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

2009-05-30T09:11:00.000-07:00

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

2009-05-19T15:02:00.000-07:00

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

2009-04-07T17:49:00.000-07:00

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

2009-03-27T18:46:00.000-07:00

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

2009-03-09T19:51:00.000-07:00

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

2009-02-18T16:25:00.000-08:00

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!

2009-01-29T18:29:00.000-08:00

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

2009-01-19T18:11:00.000-08:00

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

2009-01-08T10:38:00.000-08:00

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

2009-01-01T16:40:00.000-08:00

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.

No Words

2008-12-21T14:33:00.000-08:00

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

2008-12-12T15:32:00.000-08:00

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

2008-12-02T15:12:00.000-08:00

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

2008-11-26T10:19:00.000-08:00

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

2008-11-19T18:49:00.000-08:00

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

2008-11-15T13:04:00.000-08:00

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

2008-11-09T07:47:00.001-08:00

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...

2008-11-04T13:22:00.000-08:00

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

2008-10-28T15:09:00.000-07:00

*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

2008-10-24T18:41:00.001-07:00

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

2008-10-23T14:58:00.000-07:00

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

2008-10-14T16:31:00.000-07:00

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

2008-10-09T17:46:00.000-07:00

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

2008-10-02T19:08:00.000-07:00

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!!!