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Friday, October 31, 2008

Scars of Life

Some years ago, on a hot summer day in south Florida , a little boy decided to go for a swim in the old swimming hole behind his house. In a hurry to dive into the cool water, he ran out the back door, leaving behind shoes, socks, and shirt as he went. He flew into the water, not realizing that as he swam toward the middle of the lake, an alligator was swimming toward the shore.

His father, working in the yard, saw the two as they got closer and closer together. In utter fear, he ran toward the water, yelling to his son as loudly as he could. Hearing his voice, the little boy became alarmed and made a U-turn to swim to his father. It was too late. Just as he reached his father, the alligator reached him.

From the dock, the father grabbed his little boy by the arms just as the alligator snatched his legs. That began an incredible tug-of-war between the two. The alligator was much stronger than the father, but the father was much too passionate to let go. A farmer happened to drive by, heard his screams, raced from his truck, took aim and shot the alligator.

Remarkably, after weeks and weeks in the hospital, the little boy survived. His legs were extremely scarred by the vicious attack of the animal and, on his arms, were deep scratches where his father's fingernails dug into his flesh in an effort to hang onto the son he loved.

The newspaper reporter, who interviewed the boy after the trauma, asked if he would show him his scars. The boy lifted his pant legs, and with obvious pride, he said to the reporter, "But look at my arms. I have great scars on my arms, too. I have them because my Dad wouldn't let go."

You and I can identify with that little boy. We have scars, too, not from an alligator but of a painful past. Some of those scars are unsightly and have caused us deep regret. But some wounds, my friend, are because God has refused to let you go. In the midst of your struggle, He's been there holding on to you.

The Scripture teaches that God loves you. You are a child of God. He wants to protect you and provide for you in every way. But sometimes we foolishly wade into dangerous situations, not knowing what lies ahead. The swimming hole of life is filled with peril - and we forget that the enemy is waiting to attack. That's when the tug-of-war begins - and if you have the scars of His love on your arms, be very, very grateful. He did not and will not ever let you go.

Wednesday, October 29, 2008

Updates on Not Me! Monday

Just so you'll know, I started my Not Me! Monday post on Monday but didn't finish it until Tuesday evening.

Tuesday evening Kelvin did take Carleigh to the Texas Children's ER after she and Luke were running through the den. Apparently (I say apparently because I was in the kitchen making grilled cheese sandwiches talking to Kelvin who just entered the door from work and school) she was holding on to the back of Luke's shirt while chasing him. He tripped and fell (I'm not sure on what, because in my house everything is always in the right place, and I never have toys or junk scattered on the floor), and Carleigh kept holding onto the shirt and did a flying leap over Luke directly into the wooden strip at the bottom of our sofa. She immediately began screaming and crying uncontrollably. After we figured out what area of her body was hurt, and after consulting with our sweet nurse friend Mona, Kelvin loaded her in the car and took her to the ER. They were there the entire night, arriving home this morning around 7 a.m. The doctor took x-rays and said she did indeed break her collar bone! Of course they can't cast a collar bone, so she has a sling to keep it still, and Tylenol with codine for the pain. The bad thing is she broke her right side! She won't be able to write for a while, which could pose a problem for school work. I'm sure we'll figure something out.

As for Luke, he recovered quickly from his melt down and was giving her get well kisses to help her feel better before she left. He slept as hard as a rock which is more than I can say for Emma!

Emma, on the other hand, was probably fussy and didn't want to go to sleep last night because her tummy hurt. She threw up twice and had a poopy diaper during the night. I'm hoping it was just that the tomato basil soup and grilled cheese sandwich was too strong for her and we're not facing a stomach virus.

Monday, October 27, 2008

Not Me! Monday

I read a very funny lady's blog every day. She is inspiring and hilarious all at the same time. Her faith is very large, and God has a special place in Heaven for her...she is the mother to almost 4 children 3, 2, 1 and a newborn in a couple of days!! Anyway, this is a little thing she has created for her and her blog readers to have a little bit of fun "being brutally honest and living to tell about it."
So here goes my very first "Not Me Monday" post...

This past week, I most certainly did not unknowingly wear my cute little (relatively speaking of course) maternity cargo pants backward and not realize it until I tried to put something in my pocket. Nope, not me.

It was not me who ate all those missing Twix miniature candy bars! I don't know what happened to those!

I did not laugh almost hysterically with tears streaming down my face when Luke snuck away from our bedtime prayers to grab a cookie from the kitchen or when Kelvin was trying to punish him for something else...nope, not me!

The other day when my girlfriend and I went to lunch, I did not eat all of my California rolls, a couple of hers, my salad, and soup, and then order a plate full of veggie fried rice! That was not me!

You did not see me go through the Burger King drive through because I couldn't resist the smell. I don't eat fast food, so it could not have been me!

When a friend of mine was telling me about her friend who told her he and his wife were pregnant with their 4th child and were just now telling people because the "shock and horror" had finally worn off, I did not totally relate and and know exactly how he felt, because it would be crazy to think I was pregnant with our 4th child! Nope, not me.

I did not just kiss my husband and oldest daughter bye as he left to take her to the ER because she did not do a flying leap over Luke into the bottom of the couch and probably breaking or dislocating her collar bone or shoulder! Things like that don't happen at my house!

I did not give my permission to Carleigh to take Luke's x-rays from his finger to show and tell today, because (for crying-out-loud) my kids are not accident prone, especially Luke, and would never fall on a rock at the deer lease and almost break his pinky finger and have to go to the doctor for x-rays!

My son Luke, surely did not have at complete melt down when He realized Carleigh took his x-rays to school for show and tell, and he couldn't have yelled and screamed at her with tears rolling down his face that he would never let her play in his room again; and he most certainly did not tell her he hates her, because he loves her dearly (truly) and knows we don't use that word in our house! So, that could not have been my son!

And it's not almost 10 p.m. and my precious Emma is certainly not awake. Not her, because she's my sweet child and would never keep her pregnant mommy up this late.
Well, I'm sure there is much more I could tell you, but I don't have the brain cells left to remember everything. I'll try to do better with my next Not Me! Monday post. I hope you'll join in the fun. Follow the link for instructions, and if you don't have a blog or don't want to play along, at least comment so we can see what you didn't do! Have fun! Click on the original Not Me! Monday post. (Click on the highlighted words.)

Sunday, October 26, 2008

Did you see the Disney pics? Cheeeese!

I forgot I had been working on a post on Oct. 13. I got side tracked (oh, don't be so surprised) and just saw it again the other day. Anyway, I finally got the slide show together with some of our August Disney World pictures on it and posted it. Scroll down to take a look if you haven't already. The trip was such a blessing. Thank you again to the ones who poured out your love to us with such a beautiful gift. The memories are forever etched in our memories...

Saturday, October 25, 2008

Good news and more news

Emma had a really good evening and is having a good morning too. She is walking more than she has in a loooong time! We are thrilled! She's not quite as coordinated as she once was but is walking around the den and kitchen nonetheless! Prayer is powerful! Even if God is giving this to her for a short time, it's good no matter what.

And for those of you who don't know the news that shocked even us...we are expecting our 4th child! (Scream!) OK, I've picked myself up off the floor. We're actually not grimacing every time we say this now. ;) I'm about 17 weeks along, and the baby is due April 5. A couple of answers for inquiring we weren't trying. Yes, we were preventing. Anymore questions?

Now, we need you to pray for something else. This baby has a 25% chance of having the disease that Emma has. We are praying for the other 75%! We went to the doctor yesterday and had an amniocentesis. We will know the results from that in about 3 weeks or so. Pray for our peace and patience while we wait. And please pray in agreement with us that this baby will be healthy. I know God provides everything we need. I'm just hoping He realizes I'm about at my limit for what I can handle. ;)

Here is a picture from the ultrasound yesterday. Luke was praying for a brother, and was severely disappointed when we told them we're having another girl! Talk about rip out your heart. Kelvin said we'd be having another girl, and Luke said, "another girl?" Then Kelvin says, "that means you're special. You'll be the only boy!" Luke replied, "I didn't want to be the only boy. I wanted a brother," at which point he hung his head and went to his room. At least he has a few months to get used to the idea, right?

Thank you for praying. Have a great weekend!

Wednesday, October 22, 2008

Pumpkin Patch

I can't believe how big my kiddos have gotten. I've been taking Carleigh to the pumpkin patch since she was a baby, and now she's six! Emma wasn't all too keen on the idea of smiling for the camera or even looking in the general direction. She was giving more of a "this is torture" cry. Check out our pictures from our annual trek to the pumpkin patch...

A yummy soup recipe to go along with the fall pictures...

Tomato Basil Soup
2 large cans diced tomatoes with juice
1 14 1/2 ounce can chicken broth or stock
15 (give or take) fresh basil leaves removed from the stem and roughly chopped
1 stick unsalted butter (not margarine) (You can get by with reducing the amount of butter by about half.)
1 cup heavy cream (I used about 1/2 to 3/4 cup, and it was still good.)
pepper to taste

Cook tomatoes with juice in chicken broth for 45 min. Blend the tomato and broth mixture with the basil leaves with a hand blender you can immerse in the pot, or in batches in a blender/food processor. Stir in the butter and cream and pepper to taste. YUM-O!!

Tuesday, October 21, 2008

Speech Therapy and other stuff

Today Emma went to speech therapy. She hasn't been in a couple of weeks for one reason or another, but I think she knew right away where she was. She loves Michelle and the fun things they do. We have a copy of some of the music they use here at home, and any time we play it, she sits very still and listens. It's so fascinating. Here is a picture of Emma and Michelle working on vowels with movement. I think they're doing the "I" sound...

They also blew bubbles, and even though I don't think Emma can see them, she still seemed interested...

She really likes her new toy. It plays music and has lots of fun things to play with. The chair goes all the way around!

Here's a picture of "my two monkeys"...

And my sweet Carleigh thrilled to be at Priscilla's (our niece) homecoming football game...

Saturday, October 18, 2008

Meet Luke

So, we're getting the older two ready for bed tonight and are giving hugs and kisses. Then we settle down and begin our prayers. Luke wants to go first. (I think he has an ulterior motive.) Carleigh follows, and Kelvin closes. Right when the last "Amen" is spoken, I hear a funny clinking sound coming from the kitchen. Seems like our little darling Luke (spiritual giant that he is) steals away during Kelvin's prayer, while all of our eyes are closed and sneaks himself a cookie from the kitchen! I ask what the noise was, and then Kelvin calls for Luke. He finally comes back into the den where we are and obviously has something in his mouth. Kelvin makes him open his mouth and discovers there is a cookie in it! He scolds him while tears of laughter are running down my face. Kelvin tells him to never leave again while our family is praying and Luke bobs his head full of blonde curls yes, and says, "Yes, sir" with his mouth full of cookie! And that's how the cookie crumbled!

Have a great weekend!

Thursday, October 16, 2008

Too cute!

Emma's had a pretty good day today. She got up a little earlier than normal, so after breakfast, she was ready for a nap (thank you very much!) After a little beauty sleep it was time for a little work with Ashley...

After Ashley left, we played a little more...

And then it was time to work some more with Dee Dee, her vision teacher...

I couldn't resist taking all these pictures in that outfit! Isn't it too cute?! We're lovin' the cool front that blew through this morning. Makes me want to light up the fire pit and roast some marshmallows...YUM-O!

Tuesday, October 14, 2008

I'm learning

I'm learning all sorts of things since Emma has been sick. Are you like me and like to help out when someone is struggling or going through a trial? It's hard to be on the other end of the help. God is teaching me to let go of my pride and receive the blessings so many of our friends and family are pouring on us during this season. Pretty humbling. I think I'm slowly getting the jest of it though.

I'm also learning there is a lot to do for Emma. There is paperwork out the hoo-ha, and things to think about that I didn't even know I needed to think about!

I'm learning that God is using our struggle with Emma's disease to touch more lives than we will ever know, and that He has a plan so much better than ours (thank you, Jason.) I only wish I could understand His plan now so I didn't struggle so much. I guess that means I'm learning to have more patience too!

I'm learning there are so many people in this world doing the best they can for their children who have many different disabilities...we are not alone in this struggle. I can't wait for the day when there is no more pain, no more tears and no more suffering for the sweet children of this world.

I will close with a quote from a very special lady of a very special child who is in the arms of Jesus now. Angie said,
Many of you have asked how I am so strong. The answer is that I am not strong, but my God is, and He is in battle for me. My end of the deal is held up by praising the One who has chosen me to walk this. And I do.

Thank you Jesus! I do too!
Below you can see Emma at physical therapy today. She liked rolling down the mat, and she especially liked snoozing in the big-o bean bag.

Saturday, October 11, 2008

Back log

While I was waiting for our blog to get up and running, I wrote down some things. Sorry this is a bit out of order...

Sept. 24--There is no fear in love; but perfect love casts out fear I John 4
Today was an ok day for Emma. I did notice yesterday and today that she is not chewing her food well. This concerns me greatly. She loves to eat so much, I hate to think she might not be able to for much longer. I pureed her dinner last night and added some protein to it. I spoke with Dr. Zeller, her neurologist today and he increased her medication again. I hope this helps her seizures which have increased in intensity. It’s scary and worrisome to see her progression. I continue to ask God to take my worry and fear. It’s just so hard to let go of it when you’re talking about your child. She’s so sweet. We can still make her laugh which totally brightens my day.

Sept. 25--3:30 is not my favorite time of dayThis morning Emma was a fuss bucket. She was madder than an old wet hen that I didn’t have her breakfast ready to go immediately! She has since taken a nap and seems to be in a much better mood. I’m sure it didn’t help her demeanor any that she woke up this morning at 3:30 (yes, there are two of those in a day), didn’t go back to sleep until 5:00 and woke up for the day at 7:15. It amazes me how much she can eat. Connie, my mother-in-law, swears she has gained 5 pounds while we have been here. I've been impressed with her ability to understand my navigational directions for her. As she doesn't see so well, it's very common for her to walk square into a table, door, chair, or whatever is in her path. I've been telling her what is in front of her, and she has been stopping. Sweet little baby has been saving herself some yucky bumps! I'm not saying she hasn't gotten any though. Seems like she always has a bump or bruise or two. :(

Did I forget to mention we have been evacuated for Hurricane Ike for nearly two whole weeks now? AWRG! While Connie is a dream to have around for helping with the kids, I’m ready to be at my own house and sleep in my own bed with my own husband! (No offense, Lukester.) I’m hoping we get to home this evening. Everyone in the neighborhood with the exception of our street had power last night.

Sept. 26--There's no place like home, There's no place like home
Whoo Hoo! WE HAVE POWER!!! Yippee! We're home. Emma was so happy to be home. You could tell she new exactly where we were. She started her usual trek around the house...the circle from the den to the kitchen, to the formal, back to the den. She was so glad to know where she was.

Sept. 29--Whoa sister, look at that shiner!
Today everyone went back to school for the second time this year. The kids were so excited to be back in their routine. When I went to Wee School to pick up Luke and Emma, I had to sign a paper for Emma's injury. (Last year it seemed I signed those at least once a week.) Poor little thing is not the most graceful thing. She fell and bopped her eye on a chair. She had a shiner any school aged boy would be proud of! She looked like she was wearing blue eye shadow for several days, then it turned to yellow, purple, pink and green! A couple of days later, she fell at home and knocked her head on the rocking chair while we were hugging the others good night. A knot the size of a walnut popped up on her little sweet head! Ouch! Of course, school pictures were only a few days later. So I'll be sure and post a picture so you can see the damage when I get the pics back.

A little wobbly

Emma has been having a rough time walking the past week. She is struggling to stay up once she gets there. She may take one step before she falls, if she gets that far. Our friends at physical therapy the other day provided a walker for her. I think she gets kind of frustrated with it. It does, after all, hinder her independence somewhat! She stayed pretty tired yesterday. I think most things are just kind of wearing her out.

The good news is the doctor prescribed her a new medication. Since she's been on it, she's been sleeping better through the night (whoo hoo) and hasn't had any seizures!! What a blessing!

There's a video below of Emma trying to walk this morning. Pray for her. I'm sure she's frustrated.

Thursday, October 9, 2008

Let's start from the very beginning

March 1, 2006, our third child, Emma Elizabeth was born. She was born on her due date, a normal baby girl, and our biggest at 8.3 pounds! She grew and developed normally and had the cutest personality. Emma loved chasing her brother and sister and would stand at the bottom of the stairs on the “safe” side of the baby gate and holler for them if they weren’t downstairs playing with her. She climbed like a mountain climber, feared little of nothing and ran around the house all day opening cabinets and getting into everything. She wore me smooth out most days. She loved to clap, sing the “Itsy, Bitsy Spider” and “Twinkle, Little Star,” and loved to run up to her daddy at the end of the day when he returned home from work. Emma gave great hugs. Around the end of 2007 though, we began realizing she wasn’t responding to us when we called her. She was also beginning to fall a lot and was clumsier than normal. She had an independent and spunky personality, so part of us thought the lack of response was due to that. However, she literally only had a couple of words and was not communicating as a normal two year old should. After calling the pediatrician and discussing these things, we were sent for a hearing test.
I would like to add as a side note that it is important to be an advocate for your child. You, not the doctors, are the one who is with your child all of the time, and you are the one who knows when something isn’t quite right. Follow your God-given instincts, and follow through, even if you’re told there’s nothing wrong. Keep insisting on tests, or whatever it may be, to help figure out what the problem is with your child.
So, we were sent for the hearing test, and Emma responded as a 4 month old! We were told she had fluid on her middle ear and needed tubes. The ear doctor felt certain Emma would begin speaking soon after having the ear tube surgery, but also suggested she may have other developmental delays and recommended an evaluation with Early Childhood Intervention.
Early Childhood Intervention (ECI) is a program provided by the State of Texas. It’s called different things in different states, but from what I understand, just about every state has a program similar to ECI. They will come to your home and evaluate your child’s developmental milestones. This evaluation service is provided free of charge, regardless of income. After the evaluation, if the therapists determine your child is eligible for their services, there is a charge on a sliding scale based upon your income. The things we learn! So, ECI came to the house and evaluated her. We were mainly interested in speech therapy, of course. After their evaluation of Emma, they informed us she was developmentally about a year behind but encouraged us that she would receive the therapy she needed to catch up. There was a lot of praying and searching for a speech therapist at that point, because ECI had a waiting list for speech services. There are so many needy children out there! (If you’re looking for a career or career change, speech therapy, physical therapy, or occupational therapy are great fields and in very high demand.) God finally provided the perfect fit for our little one through Michelle, her speech therapist. Emma also later qualified for developmental services, physical therapy, occupational therapy and vision services. Emma loved her therapists even when they made her work harder than she wanted. We were so blessed to have had so many therapists who loved Emma and provided the best care possible for our little angel. Unfortunately, the temporary hearing loss was not related to Emma's eventual diagnosis. How I wish the tubes and speech therapy would have been what Emma needed to get her on the right track.

A couple of months later, we noticed Emma was having what seemed like seizures. In April 2008, we took her to Texas Children’s Hospital, where we met with the neurology team. After their evaluation and hearing Emma’s history, they informed us they thought she probably had some form of Autism or Rett Syndrome. We would do an MRI and chromosome testing to confirm. Of course we were devastated by this news, and cried out to God along with several friends and family for her healing. God met us where we were and provided what we needed, mainly calm and sanity, as we waited for the results. The neurologist called at the end of May and informed us all the chromosome tests came back negative! We praised God, but still had questions and were confused as to why she was not progressing, but rather continuing to regress. At this point she was having in excess of 50 seizures a day and losing more developmental milestones.

In June, we saw the neurologist again. He noted her decline since he had seen her in April, and referred Emma to a pediatric ophthalmologist. He was concerned about her vision. The ophthalmologist looked at Emma’s eyes and determined there was some sort of irregularity with her retina with some retinal dystrophy and referred us to a retinal and ocular genetics specialist. Later that same day the neurologist called to inform us he had seen the ophthalmologist’s notes and wanted us to know of a diagnosis he thought we were probably facing but needed genetic testing to confirm. He said it seemed Emma had a rare degenerative genetic disease known as Neuronal Ceroid Lipofuscinoses (NCL), also known as Batten Disease. We asked for a recommendation for a reliable website to research what in the world NCL was. We found that this disease is characterized by progressive mental and motor deterioration, seizures, blindness by age 4, and early death usually around 5-8 years of age or younger for the type the doctor was concerned about. There is no cure. Usually the child is completely normal from birth to about 6-18 months, when literally, out of the blue, the disease becomes active and takes over. What?! Both parents have to have the defective gene in order for the child to be affected. Wow, what are the odds? Something like 1 in 800,000 actually. Why? I don’t understand. This is unbelievable. How does someone wrap his mind around such a terrible thing? Only the grace of God kept us from falling to pieces. Of course we prayed and begged God to spare Emma from such a terrifying disease. At the same time we understood her symptoms matched exactly with the descriptions we read.

The neurologist called in July to let us know the genetic testing was complete and confirmed that Emma had Infantile NCL, the most aggressive form of the disease. I thought I would die that day. All I could do was bury my head in my hands and cry. Even though I knew prior to his call what the doctor had just relayed to us was a very good possibility, I hoped and prayed he would call and say the tests were negative and Emma had something we could fix. But God is so much bigger than we can even imagine, and he had the power to heal Emma. We prayed that our faith was big enough to believe He could. We also knew a different path may await our precious baby girl and prayed God would give us the strength to glorify and praise Him no matter the circumstance. Emma fought a valiant fight. She ran an excellent race. Her short little life impacted the lives of many. We are forever changed because of knowing and loving her. She crossed over to new life receiving a disease free and perfect body on February 1, 2010, one month shy of her 4th birthday.

We can’t imagine going through a storm such as this without the grace of God. Knowing that He loves us and cares about what hurts us makes such a difference. God does not wish for bad things to happen to us. Kelvin and I understand that when sin entered the world it became broken, and many bad things came with it. God is gracious enough to weave these things back into His perfect plan in the best possible way. Our complete trust is in God.

God doesn’t say we have to praise Him for the storms; He just says to praise Him in the storms. Just as the Casting Crowns song states,

I'll praise you in this storm and I will lift my hands for You are who You are no matter where I am and every tear I've cried You hold in your hand You never left my side and though my heart is torn I will praise You in this storm.

Through every step of this journey we had the strength and support of our friends, family and our extended church family. They prayed when we didn’t have the words. They loved us deeper than we could have ever imagined. They fed us dinner, cleaned our home, and mowed our yard. Anonymous friends allowed Emma to meet Cinderella at her castle. We have seen the hands and feet of God. Please continue to lift us up to the throne of grace as we struggle in this life without Emma, finding our new normal.

You can read more about Emma here.

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