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Wednesday, December 26, 2007

Why can't anyone tell me what is wrong with her?

This same thing happened last year. Katy is always sick. Last year she was sick from December to April and it looks like she is having a repeat. She has been sick so much and none of her medical staff knows why. She will be fine and then an hour later she is running a 104 degree fever. An hour after that she is fine again. She coughs all the time and sometimes so hard she throws up. She also gets slow gastric emptying, meaning that her stomach slows way down and it takes forever to digest. I change her diet to help and it usually does improve, but then it comes back. I am never going to get her to gain any weight at this rate. She will gain 2 or 3 pounds, then go through one of her spells and lose it all. She just can't break the 25lbs mark. I just want to know why she keeps getting sick. I can't keep dealing with this all the time, I am already the busiest mommy in America, I don't need even more to deal with.

Monday, November 5, 2007

Real Families Real Answers Update

The crew that came to film us for the documentary has updated their blog and we are on there right now. I really cry when I think about what an awesome opportunity this is to tell the world about my blessed Jesus and how he holds us up and is the source of this unstoppable joy that we have as a family. Stay tuned for more updates about the documentary as they come available.

Friday, November 2, 2007

Another parent sounds off

about what autism really is and how it should be "treated".

Sorry it has been so long since I last posted.

It is just the average busy stuff we do all the time getting in my way. Lets see, what has happened lately?

Sean lost his first tooth and got 75 cents from the tooth fairy. He bought a Dr. Pepper out of the soda machine at church with it. And what is hilarious is that he drew a picture of a soda can, taped it to the washing machine, pulls out the detergent dispenser to put money in and pulls out a soda that he put in there. So now I have to watch for money and soda in the washer.

My dishwasher died and I got a new one and it is awesome, no rinsing or rewashing, yippee! But we tore up the flooring in the kitchen removing the old one and putting in the new one. So I guess our next task is to redo the flooring.

We are broke as usual and have no idea what the budget for Christmas is going to look like. I would love to start my shopping and wrapping now, but with no money and no idea how much William's Profit Sharing Payout is going to be, it will have to wait and it is driving me nuts. I made a list with everyone we intend to buy for and some ideas on what to get, that made me feel a little better about it all.

I do have some yummy holiday recipes converted to our dietary needs so we'll just have to see how they turn out. I can't have milk and soy. William can't have sugar and is extremely picky. Sean can't have milk, soy, gluten(wheat, oats, barley, rye and spelt), red food coloring and cured meats. Katy can't have milk, soy, corn, eggs and oranges and only eats purees. J.D. is starting to show some subtle signs of food allergy, but I haven't out what to yet. I will try to eliminate cow milk first since it is the most likely culprit. That won't be hard to do in my house.

Thursday, September 20, 2007

My thoughts on the Jena 6

I was so saddened to hear that such thing could still happen in 2007. Okay the white boy who hung the hang man's noose in the tree was wrong and he should have been punished for such blatant terroristic tactics. He however did NOT deserve to be beaten within an inch of his life. The young men who beat him deserve to be charged as adults and should be sent to prison for their crime.

Now to the "American's" who are supporting these boys....Hello this is the same as Arab Americans supporting the 9-11 bombers. Black people should be putting out statements saying that this is not what they had in mind with the civil rights movement and distancing themselves from these boys. This was a hate crime and and an act of terrorism and saying the boys should be charged as juveniles is just absurd.

Wednesday, September 12, 2007

Another blogger sounds off

about a subject near and dear to my heart here.
Warning contains offensive content.

Tuesday, September 11, 2007

Big step

We moved our church membership to Westwood Baptist in Weaver/Alexandria on Sunday. This is a huge step for us, but we are really excited about it. William started going to Coldwater Baptist when he was a little kid like 25 years ago. I started there in August of 1996. We met and married there. We have a lot of fond memories of our days there and will never forget the wonderful people there. God has been calling us to move for a long time, well over a year. We were just scared to go. We have never visited any other churches except the time William was called as a interim youth pastor. We questioned our motives and searched for God's will for us and this is it. We debated whether we were confusing our own selfish desires for a church closer to home with a calling from God. Some major stuff has been going on at Coldwater and God gave us the violent shove we needed to finally listen to his call for us. When we visited Westwood we knew right away that it was the living breathing body of Christ. God confirmed to us that this was in fact his will through the preaching and warmth of the staff, especially with our children. Several of the people that work with our kids at school go to church there. That is a really big plus for us because some of the issues we had at Coldwater were directly related to our kids. The preaching is wonderful as it was at Coldwater. The music is just awesome. This church fits us and we are so happy to be there. I pray that God's hand will be on Coldwater and they will reach the community for Christ like no other time in history. We just needed a change and God affirmed that for us.

Check out this video.

Jesus can rescue us from ourselves if we just let him.
Everything video.

Friday, August 31, 2007

They came and now they are gone

The four men (Blair, Dave, R.J. and Tyler) who came to film us were wonderful people with a genuine concern and love for the families in the series. They respected us and told us many times how much they were in awe of how strong we are as a family. We had the opportunity to share the good, the bad and the ugly. Special thanks to Susan Goode who came to the house to film a segment on therapy. Katy's therapist was not in the office and we really wanted to show some therapy. Susan stepped up to the plate. Also special thanks to Carpenetti's Italian Pizzeria for opening their doors for us to film a segment. And also Saks Winn-Dixie for stepping in to help capture the grocery shopping experience. The restaurant on Cheaha also welcomed us. The guys took us out to dinner at the Cheaha restaurant and even helped with the groceries. We have really been struggling lately so that was a true blessing. The show will be the 12th in the series and will be on sometime in the spring. We will probably get a copy and if we do I would like to have a public showing at a church so we can share it with our community. It is going to be soooo good! May The Glory of the Lord shine through our story.

Monday, August 27, 2007

Busy week

The TV crew from BYU TV will be here on Wednesday at 9AM so I will be sending the next few days cleaning like a mad woman because your house can never be clean enough for a TV crew. I am so excited that we will have the opportunity to share what a blessing our family is and how our faith in the Lord has strengthened us through this sometimes difficult journey. We really feel like God chose us to be the parents of these wonderful kids because he knew we would turn to Him for strength and He would be glorified through our lives. I pray that my life is a testimony of His power and Love and that others will see that every day in my life. If anyone would like to watch the baby for me so I can focus on house cleaning I would be delighted to give him up for a couple hours.

Tuesday, August 21, 2007

The article that changed everything

The article that I stumbled upon with a possible diagnosis for Katy is located here. Please listen to the interview of the little girl's parents remembering their angel.

Saturday, August 11, 2007

Katy is into everything

She is walking all over the place now and giggling the whole time. She is soooo proud of her accomplishment. She only uses her wheelchair for the bus now and is using her walker less and walking unassisted more and more each day. It is so exciting to see her excel!!

They are both in school all day, WOOHOO!!

They get on the bus at 7:15 am and get off the bus at 3:00pm. It is so nice to get stuff done and spend some time with J.D. every week day. They are both still trying to get adjusted to their new schedule, but are adjusting well. Sean seems a little off and I can't really put my finger on what is different about him. I am not sure that he is in the right placement at school and am giving his current placement a shot before I decide whether or not it is working for him. I sort of feel that the closed autism unit is a bit restrictive for a boy who functions so well in a regular environment, but his teacher has an excellent track record with getting non-verbal kids talking. She understands his current communication method which is sign language and is using some augmentative communication devices in the classroom. She says that many kids who learn to use these begin speaking shortly after using these. He is doing well with them. I really like her and met some of the other moms at the open house and they like her too.

Friday, July 20, 2007

The first time I called 911

We were waiting for the bus that takes Sean to camp this morning on the front porch. J.D and Katy were playing and J.D. fell down so I went to pick him up and Katy spit up just a little bit because she thought it was her fault and was upset. While I was attending to them I looked around and Sean who had been standing right next to the front porch was gone. I took J.D. and Katy inside and began to look for Sean. I looked and looked and screamed and screamed until my throat hurt. The bus came and the bus driver helped me look. After several minutes I told the bus aide to call 911. I was so scared I can't put it into words adequately. The only other time I was more scared in my whole life was when Katy turned blue and went limp. I picked up the phone and dialed William because I know he can calm me like no other and I needed to remain calm. Before he could answer I heard Sean's voice and looked down, he had crawled under the house again! I just dropped the phone and went to tearing the siding off the front of the house to get him out. William will fix it today, no excuses!!! William was still on the line when I finally realized that I had not hung up the phone before I dropped it. He was so scared just trying to figure out what was going on. I told him what happened and of course he was relieved that Sean was fine. The bus driver and I cleaned Sean up and he got on the bus. It has been an hour and a half and I am still shaky.

Katy is also taking steps!

Katy is just blossoming more everyday! Her daddy was holding her and stood her up on the floor facing the coffee table in the living room about 2 steps away. He let her go and she took 2 steps and we cheered her on. She did this several times cause she LOVED the applause we gave her. I guess she is competitive and couldn't let her little brother show her up.

Tuesday, July 17, 2007

J.D. is taking steps

I noticed the other day that J.D. was standing unassisted. I clapped my hands and he was so proud of himself. Katy saw him doing it and how much attention he was getting and tried to do it herself, but she just isn't quite ready yet. They are constantly competing for my attention and have found another way to grab mommy's attention. Right now they are fighting over my keys. Well last night J.D. was standing in the living room and he just lunged forward and took 2 steps to get to me. I almost cried to see him make such a wonderful milestone.

Friday, July 13, 2007

Walgreens Rocks!!!

Please consider supporting Walgreens. They are doing some extraordinary things to help people with special needs be productive members of the community. Let's hope that other businesses will follow their lead.

Thursday, June 21, 2007

Sean really scared me today!

I was putting Katy down for her nap and I heard Sean go out the front door. So I went out to get him. He had somehow crawled under the front of the house through a vent in the foundation. He was stuck and couldn't get back out. I tried to pull him out, but he just couldn't fit through the hole. I have no idea how he managed to get in there. He was scared and signing "help please, help please!" I managed to pull a piece of siding off so I could get him out. He was so filthy I just put him right in the tub. Just another episode of "Adventures in Autism Land". I have read that many autistic kids like crawling into tight spaces, so I guess this is just par for the course.

The best blender in the world

I have wanted a Vitamix blender ever since Katy turned 2 and I decided to feed her real food through her tube. I have been using babyfood because our blender just couldn't get the food smooth enough to prevent clogging. That got really expensive, but the blender that would do what I needed it to do was the vitamix and it was too expensive too. They cost like $480. With a doctors note stating that the child needs it for tube feeding you can get it for $280. That is still too much for us to pay at one time. I started asking my friends how they got their blenders for their kids. Most of them either saved up the money over a long period of time or they got help from their church. I didn't want to ask such a large amount from our church and saving wasn't realistic with spending so much on baby food each week. I contacted the president of vitamix and explained our situation and sent him a note from Katy's doctor and he DONATED a blender to us. We got the blender on Monday and let me tell you it is worth that $480. The first night Katy had spaghetti and meat sauce with a fresh herb salad through her tube. It is so much easier to meet her nutritional needs with real food. Baby food is expensive and rather void of nutritional content especially calories, fat and protein as well as some vitamins and minerals. She is holding her food down well and her energy levels are up and her color looks better than it ever has. I contacted Katy's dietician and she is excited to help me figure out what Katy's needs are so I can give her lovingly prepared meals even if she has trouble with oral eating. It makes me feel so good to cook for Katy too.

Monday, June 11, 2007

Katy is Walking!!!!!

Katy walked all over church yesterday all by herself using her walker! She was grinning ear to ear and soaking up all the attention she was getting. She has learned how to turn the walker and is working on getting herself up on it from the floor. I am so proud of all her hard work. She is one step closer to getting out of the wheelchair for good.

Thursday, June 7, 2007

Well, she changed her mind

We were beginning to worry about her last week shortly after she signed the contract. She kept bringing people over to see the place and asking questions that she should have asked prior to signing a contract. We could force the issue because she is bound by the contract, but we have decided to just forget about her and call back the other people who showed interest in the house. This is such a roller coaster. I am trying to be upbeat and not let this get me down, but it is hard. We cannot make an offer on the new house until we are closing on this one, so it is a waiting game.

Thursday, May 31, 2007

Woohoo, we sold our house!

One of our neighbors I guess saw that someone came to look at our house and told her ex-daughter-in-law that we wanted to sell. She came over and looked before we even put a sign up in the yard. She decided she wanted it and went to her financier and got approved. So, today we are meeting to write up a contract. As soon as we have a contract we can make an offer on the house we want. I never dreamed this all would happen so fast. I do know that if my house wasn't in order from the last 6 months of following flylady, I wouldn't have had the courage to make a leap like this. I have run the numbers and we will be paying out only a few dollars a month more than we are now and get a much larger house in a wonderful neighborhood. The insurance on this house is sky high, so we will save $$ there. We should be able to use the equity from this house to pay off all our debts including the car payment. Paying off the car will allow us to drop to liability insurance, which will save us quite a bit. The house we buy will also build equity much faster than this one because it is a site built home instead of a mobile home. All I can say is Thank You, Lord for blessing our family!

Friday, May 25, 2007

We are selling our house

We have been working like dogs on the house. We have found a house that we want really bad, so we have to sell this one. Hopefully we can sell ours before that one sells, but if not that's okay we'll just find another one. You can view a listing of the house we want here
If you know someone who might be interested in buying our house give them our phone number.

We are going to be on tv!

Our family has been chosen to be featured on a documentary that will air next year on BYU tv. The documentary is called Real Families, Real Answers and is about families and their faith and how faith is so important. You can look at their website here . The production team chose us because of all the adversity we have faced and yet remain committed to our marriage, our family and our faith. When I signed up I never dreamed they would even call us back let known choose us to be featured. We prayed long and hard about this and have decided that this is a good way to let people know the power that Jesus holds in our lives. The director even told me that they will not sensor my religious beliefs in any way and they are specifically looking for how faith affects our family life and how we handle adversity.

Wednesday, May 2, 2007

A diagnosis for Katy?

I think I may have stumbled across a diagnosis for Katy. I was talking to another mom of an autistic child about all of the special, beautiful characteristics of my kids. She said that my words reminded her of an article she had read about a little girl that had a genetic syndrome. Her father said many of the same things about her that I had said about Katy and Sean. They are non-verbal, but the communication is so great, they laugh and play and are just a ray of sunshine. On that page there was a link for more information on this little girl's syndrome. It is Cornelia deLange Syndrome(CdLS). I really feel like this may be our answer we have waited so long for. I contacted my geneticist and she said,"No Katy is too pretty to have that." I almost fell out of my chair I couldn't believe that a professional would say something like that. I mean, does that mean that CdLS kids are ugly? Children are a gift from God no matter what their ability level and they are ALL beautiful. Anyway here is a link to the CdLS Foundation website. http://www.cdlsusa.org/

Tuesday, April 17, 2007

So sad

I was watching the news last night when a story caught my attention and I immediately burst into tears. Apparently a 6 year old boy from Tuscaloosa county who has autism wandered away from his home and drowned in the Black Warrior River. His beautiful face is all I saw as I closed my eyes to go to sleep last night. Sean went through a wandering stage a while back so I completely understand how this can happen.

When he was 2, I awoke one stormy morning to the front screen door slamming open and shut. I at first thought it was the wind blowing the door, then I heard Sean giggle and knew that he was outside in the storm. I jumped out of the bed and threw on my robe and pulled him in the door. I just sat there on the floor holding him and trembling. We installed locks on the top of the doors that day. A few days later he got out again and my neighbor brought him back. He had apparently very quietly stacked storage containers on top of one another and opened the lock at the top of the door. We had to get really creative really fast because we live just off of US highway 431 and it is very busy and the traffic is very fast. We turned his door knob to his room around so we could lock him in his room and installed alarms on the doors. I didn't want to do this but I'd rather have him safe in his room than to get out and get killed on the highway. He is sensitive to high pitched, loud sounds and will avoid them at all costs. It only took him opening the door one time with the alarm activated to realize that he will not be sneaking out anymore. He stood there hysterically crying and slammed the door shut holding his ears and ran to me for help. I explained to him that we had to have the alarms on the doors to keep him inside unless we could go with him to watch him. He seemed to understand and never got out again.

I am praying for this family. I read that they also have an 8 year old son with autism as well and I know that will be doubly hard on them trying to explain to him what happened to his brother. I can't imagine the pain and struggle they are going to face as the whole family progresses through the grieving process. I know they are part of a church family and will be turning to them for support. Please view this story at http://www.nbc13.com/gulfcoastwest/vtm/search.apx.-content-articles-VTM-2007-04-16-0017.html

Monday, April 16, 2007

Katy has been well for 2 weeks!!!

Katy has been so sick since December. She was literally sick or on antibiotics for 3 1/2 months. We went to the dr. last time and he was completely at a loss as to why, but he gave us some samples of Allegra to try. Allegra is an allergy medication that was just recently approved to treat hives and other allergic reactions in addition to nasal allergies. Katy has many, many allergies so we decided to give it a try. I personally feel that Katy's problem is that her sinus cavities are malformed given the cleft palate and all and that along with her allergies is creating a chronic sinus issue. Many kids need to have their tonsils removed to stop chronic sinus infections, but that is not an option with Katy. Katy has so little tissue in that area of her body that removing the tonsils would risk causing an inability to make speech sounds. I really pray that this is all that she needs to remain healthy. She has been through so much already and I hate to see her sick.

Tuesday, April 3, 2007

This blog thing is so cool

I am learning how to do all kinds of cool stuff to my blog. I just wish there was a messenger on it. Oh Well, It's still pretty cool.

Monday, April 2, 2007

Having a bad day

Sean got a new pair of shoes yesterday because his old ones were falling apart. New things are not Sean's idea of fun. His autism creates a very strong need for sameness and any threat to that causes him great trauma. I started trying to get him to put on his shoes at 9:00. The bus comes at 11:00 and we usually play outside after breakfast until it comes. Well that didn't happen this morning. He would NOT put his new shoes on. He just kept crying and signing "shoe". I told him that the old ones were no good and he would have to wear the new ones. We went round and round about it, but no way was he going to put on those shoes. I told him that I was not going to get the old ones and he was going to wear the new ones no matter what he did. He then got very angry with me and began to hit and kick me. He NEVER does this, I was shocked. I eventually had to hold him down and put them on and then keep him from taking them off until the bus got there. I am totally exhausted and at a loss as to what to do about the new shoes issue. The only thing I can do is make him wear them until he gets used to them.

The Easter Drama

Our church(Coldwater Baptist Church) had our Easter drama yesterday. I must say that it was very good. Every person in our family had a part. I sang a solo on the last song, Christ the Lord is Risen Today. William played Jesus for the crucifiction and resurrection. And there was a scene where I sat in a rocking chair reading to all of my kids from the Bible while the choir sang Tell Me the Story of Jesus. I hope that is the story of my life, that it will tell the story of Jesus from every facet.

I was sooooo nervous for my solo because it is rather high and I had just watched the crucifiction scene so I was a little choked up and I just had a hard time in practice with the song. My hands were sweaty and my legs were shaking.

William did an excellent job with the portrayal as well as Willy and Rick Walls who played the Roman soldiers. I could hear everyone in the place gasp as they took him from the cross and he fell to the floor and the sound echoed through the whole place. I hope that next year will be even better and it will touch someone to the heart.

The children had a musical celebration last night and it was really great. Sean took part for the first time and he did very well. I hope to at least teach him to sign while the others sing, but we'll just have to see how that goes.

Saturday, March 31, 2007

Barlowgirl: Never Alone Music Video

This song speaks my heart at the darkest times

Friday, March 30, 2007

Miracles happen almost daily around here

Sunday was a day of miracles for Katy. She was playing in the sanctuary at church while we had choir practice and her Daddy was watching her. He got my attention and told me to look at her and she was on her hands and knees rocking back and forth. I was thrilled and by this time she had everyone's attention, Anita(the choir director) even stopped the music. Well here comes the miracle! She actually crawled on hands and knees about 10 feet with a grin the size of Texas on her little face. The crowd applauded and she beamed with excitement and did it again. Well, that's not all folks. Later that night I was sitting on the couch eating a burrito and she scooted over to me with that same Texas-sized smile and snatched the burrito right out of my hand and took a bite. She quickly dug the tortilla out of her mouth and savored the bean and beef filling. I was completely floored! I thought I was dreaming. I fed her a good bit of that burrito filling and she still seemed a bit hungry so I fixed her some beef baby food and warmed it and spiced it up with some Mrs. Dash seasoning and some salt and she devoured it all. She has been eating decently ever since. Maybe, just maybe we are on our way to a tube-free Katy Bug.

Tuesday, March 27, 2007

Spring break was wonderful

I was NOT looking forward to spring break. I would be stuck with the kids all day all by myself and William was working overtime all week to boot. All that dread was for naught. The weather couldn't have been more wonderful. Sean usually has trouble with schedule changes and this time was no different. He had some issues but we took them with stride. We went to the park 4 of the 5 weekdays and played the afternoon away. We got some fun in the sun and my house was protected from the the 3 little tornadoes.

We will be meeting with the school staff soon to discuss plans for the summer and for placement options for next year. We have some major decisions to make. We can put Sean into the Autism program at Saks Elementary which has only autistic kids in it, no typical peers. Alternatively we can put him into a regular classroom with the extra help he needs. I am not sure if he is ready for this step yet, but he does well at church in a typical classroom setting. I can also decide if some combination of these 2 options should be implemented.

I will also be asking about options should we decide to move in the near future. I think that as long as we are in the Calhoun County school district Sean will be able to attend the autism program(if we choose that option), so that would keep our options open as far as what neighborhoods we could choose. The average person gives little thought to school district when they choose a home, but that is the single most important factor for us. With kids that need extra support in order to receive an appropriate education, a school that can and will provide for those needs is crucial. I pray daily for the children's education staff and hope they will be as active in their care as William and I are.

Wednesday, March 21, 2007

Today is Down Syndrome Awareness Day

Although no one in my family has Down Syndrome, I have a special place in my heart for all special children. Their smiles brighten your day and light your life with undying love. Check out this photo montage. http://www.giftsds.segullah.org/photo_montage.htm

Tuesday, March 6, 2007

I have finally found myself

I have struggled for years with keeping my house clean and my life free of CHAOS(can't have anyone over syndrome). I have tried cleaning marathons only to become exhausted and abandon my duties. I wake up and am so overwhelmed by the mess that I just feel paralyzed. Then I feel guilty and feel like a total failure. I feel like a bad wife and mother. I am not worthy of all the blessings I have in my life.

Then I discovered something truly wonderful. A lady named Marla, who was just like me, but managed to find her way and become the FLY Lady. She offers her help for free and gives me the hope and encouragement I need to keep on FLY(Finally Loving Yourself)ing. This wonderful lady inspires thousands of women to keep their home and love their families by doing babysteps toward that beautiful home we all dream of. We get rid of the clutter that weighs us down, leaving the guilt behind. A baby doesn't feel guilty that he doesn't yet know how to walk, no one has taught him yet. Keeping your home is the same way for you. You just gotta start where you are and listen to someone who has been right where you are. I know there are a lot of e-mails, but if you read them you realize that you need them to change your thinking a little thing Flylady calls "flywashing". If you are like me take a look at her site and learn to love yourself like I have. Her website is linked at the bottom of my page.

Since following Flylady's guidelines for 9 weeks my house is nice and I look and feel great. I am taking care of myself and therefore I have something to give to everything else I have to do.

Tuesday, February 20, 2007

Why I blog

I wanted to blog to share with whoever will read who I am and who my family is and how we view the world. I am quite different from most of the people you'll meet out there. I am a stay at home mom and homemaker by choice and love it most of the time. It has been a long journey for me to be happy in this place in my life. I have struggled with depression, anxiety and low self esteem, but thanks to flylady I am happily babystepping my way to a better life and home. Please check out the link at the bottom of my page. She has literally changed my life in the 6 weeks I have been listening to her. My home is coming together and I am finally loving myself. I don't have to work as hard to keep all the balls in the air because everything is in order. I wake up every morning to my shiny sink and that makes me smile. My shoes are on and I am ready to tackle anything for 15 minutes at a time.

Monday, February 19, 2007

The beginning of my blog

I finally decided to go for it and create a blog. I have been hounded to set up a myspace, but decided against it after hearing about some of the things they have been doing. Everyone who knows me knows I am a lactivist and fight for every baby's right to be breastfed if at all possible. Well Myspace is now deleting pictures of nursing babies claiming they are obscene. I have seen many profile pictures on there that were obscene and a baby doing what comes natural is NOT obscene. There will be pictures of my baby breastfeeding on my site and if you don't like it then don't look. I may be a little behind on posting here, but after all I am the busiest mommy in America.