Yet Another Hospital Visit

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!

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

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...

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

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

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

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!