Perspectives

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

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

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

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

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

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

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

Seizures

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

Recent Victories

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

1. Scooting forward to get an object of interest.

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

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

4. More eye contact every day...

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

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

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

Lessons on How To Puree Food

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

A Challenging Day

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

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

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

I just desperately needs some answers.

The Beginning of a Journey

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

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

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