BIG NEWS!!!

FYI: It is just after 12:00am. So in this post when I refer to today, I am talking about Thursday.


My post for the day was just going to about Nathan getting his braces for his feet. But Nathan gave me something much much greater to post about.


NATHAN STOOD BY HIS SELF TODAY!!!

Not just once, not twice, but several times. And not only did he stand but he also took steps better than he ever has. After one day of him wearing the braces off and on, I see a difference.

You know, I spent Tuesday night and most of the day Wednesday crying, because of the things I read about the contractures, scoliosis and the spastic paraplegia. And today my little boy is standing and stepping! Am I the only one that thinks that God is telling me something?

Tonight I'm crying again, but tonight it is all Happy Tears.

Today in therapy Nathan added some words to his vocabulary. He said "Stacey" and "Shoe". He has been very active and talkative today. When we were leaving for the day. He told Miss Laura "Bye Bye" then he decided he wanted to tell everyone bye bye. So he told everyone in the waiting area Bye and then at the desk he told Miss Dana Bye. He has been saying that for a while now, but this is the first time he has wanted to tell everybody.

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The man at Shriners that made Nathan's braces, also gave him a pair of shoes. I have never seen shoes like them. They are both made for both feet. You can't put them on the wrong foot. They look like they are on wrong, but that's the way they are made. He is wearing the shoes in the pictures above.


Thank You all so much for your Prayers.

What is inv dup 8p with deletion?

The title of the last post probably threw you. You were probably asking yourself what is she talking about!? At first I didn't understand it either. But now that I have some understanding of it. I will try to help you all understand it.

It all started with my egg. An abnormal egg, I guess you could say.

There are 2 of each number of chromosomes. We get one from our Mom and one from our Dad. There are 22 pairs and 2 sex chromosomes. XY for males and XX for females.



Each chromosome is made up of two parts. The short arm or P and the long arm or Q.

When I got pregnant with Nathan, the egg had a duplicate piece of P of chromosome 8. It inverted and stuck on top of the original chromosome.

At some point, a piece of chromosome 8 was deleted. Which is common in people with the inverted duplication.

Dray and I had to get some testing done earlier this year to find out if either one of us were carriers. Which we weren't. So when the doctor said that it was my egg that had the duplicate piece, I got weak in the knees. I have some what blamed myself for Nathan's chromosome problem because after we lost Katelyn to Turner Syndrome Genetics told me to take Folic Acid, and I had read the artilces about it but I still didn't take it like I should have. So I asked Dr. Rogers if this happened because I didn't take my folic acid. He assured me that it was nothing that I did or didn't do.



I look at the pictures of Nathan's chromosomes, and it is amazing to me that something like this can happen. I do know that Nathan is the way God intended him to be.

Please keep Nathan in your Prayers. Also, please Pray for me. I know that it is in Gods hands and I do have Faith. But I catch myself looking at Nathan and feeling broken hearted because I don't want him to be in any pain(see below). I know it is bothering Dray also. He just doesn't show it like I do. So, please keep our family in your Prayers.

I will try to post the pictures of Nathan's chromosomes later to give you all a better idea of what happened.

Inverted Duplication of 8p with Deletion

Okay, I could not get the documents up so I'm going to explain this the best I can.

First of all I can say by the things I have read that Nathan's case seems to be less severe than most of the cases they've studied. There are a few things that concern me (#3).

1. In most cases, the children walked between the ages of 7 & 9.

2. The mental handicap is life long.

3. In the older patients, Scoliosis*, Contractures* of the large joints and Spastic Paraplegia* occur. These are the things that concern me because it does say that they all had Hypotonia* (Nathan has) in younger childhood. A lot of the older children in the study had already started to develop some of these problems.

4. Agenisis of the Corpus Callosum is due to the chromosome abnormality.

5. Speech in most cases were little to none, even in adulthood.

6. Heart defects are a common problem, but the doctor said that he doesn't consider Nathan to have a heart defect. His heart is shifted and rotated, with no signs of a problem.

7. Dental problems did occur in some patients. Which explains Nathan's brittle teeth.

That I believe sums it up for the most part, other than facial abnormalities which isn't a concern of mine.

I hope this answered some questions that you all have. I know it answered mine.

*Definitions-

Hypotonia- Low muscle tone.

Scoliosis- Curvature of the Spine.

Contractures- A contracture is a fixed tightening of muscle, tendons, ligaments, or skin. It prevents normal movement of the associated body part and can cause permanent deformity.

Spastic Paraplegia- Slight paralysis of the lower extremities with increased muscle tone and spasmodic contraction of the muscles.

*Note: The definition of the word spasmodic is "The nature of a spasm."

Greenwood Genetics

We went to our appointment with Dr. Rogers at GGC today. After canceling yesterday because of a bad feeling that Momma and I both had. This appointment was for the doctor to talk with Dray and I to let us know a little more about Nathan's chromosome abnormality. What I was expecting to be a little information turned into a plate full of information. Dr. Rogers did find some studies on people with the same condition, 26 that have been documented. He did say that Nathan is in the 10th percentile weight and height. His head size is in the 25th percentile. He said that no one could say how Nathan will develop. (Of course we knew that, only God knows what the future holds, for any of us.) He gave me some articles to read. Which I have started to read but I haven't got very far. I have read though, that without any problems with the organs (which we have not seen with Nathan) People with this condition do have normal to near normal life expectancy. That was a big load off of my chest because up until today we had no clue what to expect. There is so much information to share. I am going to try to get the articles up where you all can read over them if you would like. I'm not sure if I will be able to but I am going to try tomorrow. Dr. Rogers did call a doctor friend of his in Chicago which is one of the best doctors that deals with the Corpus Callosum. He called to ask a question and found out that he and a doctor in California are about to start a study of Agenisis of the Corpus Callosum and the Gene that it comes from. Dr. Rogers had already asked us about following Nathan so that if there is anyone else out there with the same condition, they can find answers to their questions. We gladly agreed. So when Dr. Rogers talked to the doctor in Chicago, he let him know that we were willing to help with the study. It's not a for sure thing yet, we would have to sign some papers first. But it is possible. I will try to get those articles up for you all.

I know I didn't give a lot of information on the doctor visit today. But there's just so much, that I have no clue really where to start. So if you have any questions please leave them in the comments or email me. And I will be more than happy to answer them if I can.

Oh Yeah, one more thing. They have blood left from the samples they have got from the three of us and I can't remember exactly what they're going to test for but they are going to be doing some further testing with our DNA.

God's Beautiful Creations

Dray, Dylan and I were on the porch after the rain this evening, I was reading over some papers from Greenwood Genetics, when I happened to look up and see a beautiful rainbow. I had to take some pictures to share with you all. One of the many beautiful creations God made for us to enjoy.

Jordan for Lt. Governor!

If you're like me you probably never heard of this man. But Momma brought it to my attention that there were signs up along 221 around Woodruff that said Jordan. She said after the primary's the other week she would like to get a sign if she could find one. Well she did and now it is hanging on Jordan's wall. We're going to hang it from the ceiling when I get some string. He loves looking at the colors.

Dylan's New "House"

Dray worked with Dylan in his room Sunday afternoon after they went to the driving range. When they were done Dylan came in the living room and told me to come look at his new "house." When I got in there, Dray had put Dylan's sleeping bags up around the bed and slid his TV stand up to the foot of the bed. It was a creative idea and Dylan loves it. We've all had to go watch TV with him today. But before you can get in, You have to knock, then say the password, then you have to use two keys to get the door open. (By the way, the password is "Corday".) One of those Dylan made words.


It gets pretty warm in there. So Dray made a hole between the covers and put the floor fan up so he has a "Window Unit."


I took some pictures. One of the outside, one of the bottom where the TV is and one at the head of the bed. Dray even put his gaming chair on the bed.

Families In Need Of Prayer

Yesterday I got a call from Momma saying that my nephews Matthew & Joseph, lost their Grandmother to Cancer on Wednesday. Please keep them and the rest of the family in your prayers.

This morning I got a call from my friend Amanda, telling me that her Aunt and Uncles house caught fire in the middle of the night. Everyone is ok. They all made it out and they got their animals out. But the house is a complete loss. Please keep them in your prayers.

New Vocabulary

Nathan has been talking and interacting a lot more lately. I posted last week about him saying baby and car at the eye doctor. Well a couple of days after that, he said "Dylan". Then, last night, I was holding him while I was cooking and I was telling him what was in every pot. When I got to the green beans I said it a couple of times and the next thing I knew he was saying "green beans." Lastly, today while we were waiting on the doctor to come in the room, I was saying different words trying to get him to talk. When I said Nathan he shook his head yes, smiled and said "Nathan." He is really coming along. Thank You all for keeping him in your prayers.

Feeding Doctor

Nathan went to the feeding doctor today. By their scales he weighs 22lbs 11oz. He always weighs less there. So, going by that weight he has dropped under the chart again. He has grown taller by an inch. He is still behind on the height but he is making progress. She is pleased with the progress that he is making as far as sitting, standing and eating. She wants me to add more protein to his diet (to help him with weigh gain and muscle growth) and I have to start adding Olive Oil to any baby food he eats to add calories. (FYI: I can't completely get him off of the baby food.) He likes "Big Boy" food but he still likes having that one meal of baby food a day. Anyway, the visit went well and he doesn't have to go back until August.

Mini Golf

We took Dylan to play putt-putt last night. We went out to the old Putt-Putt place on Reidville Rd that is now called Impact Mini Golf. Dylan scored a 61, I came in 2nd with a score of 54 and of course Dray won with a score of 49. He got 3 Holes-In-One. I only got 1 but that is better than I normally do. Dylan got a lot of holes in two. The babies went in their stroller. They enjoyed themselves. They only whimpered once and that was while Dray and Dylan were playing arcade games. I started pushing them around and they were fine after that. On course 3 they have put up black lights and decorated the green on every hole so that they will reflect in the black lights at night. I told Dylan that we would bring him back when we had someone to watch the babies since it gets dark so late. It interferes with their bed time. I forgot to take my camera so I don't have any pictures to share this time. I did want to share the story though. I will be sure to get pictures the next time we go.

Some pictures

Dylan decided he wanted to hold Nathan Saturday afternoon. He's such a good big brother.



Daddy with the kids on Father's Day.



Judy with the kids on Father's Day.

Father's Day 2006

Well we hope that everyone had a great Father's Day 2006. We weren't able to do half of the things we wanted to do today. There just never seems to be enough time in a day. We are still going to see Wayne and Papa which we are hoping to be able to do by this week-end. I'm so thankful that we all felt better than we did on Mother's Day. We went to eat dinner with Daddy and Judy at Fire Mountain. That place was packed. Dad's every where. When we passed by Applebees and Ruby Tuesday's the parking lots were empty. That just goes to show, that when Dad's choose, they would rather have the good ol' home cookin'.


Oh yeah, Dray and Daddy both loved their shirts! If you have little ones, these shirts are the best gift. They're personalized and affordable. You can check them out here.

HAPPY FATHERS DAY!

Happy Father's Day to all of you G-R-E-A-T Daddies out there!! Have a wonderful day!

Happy Birthday

Happy Birthday Haley! Hope you have a great day. We Love You!

Messy, Messy, Messy

(Dylan purposely put blue paint on his nose and cheeks so he could look messy like Nathan.)


(I had already picked up some of the mess before I took this.)


Can you guess what this post is about? A mess...Maybe? A couple of weeks ago, Dylan and I were in Wal*Mart and found these cool shirts for Daddy & Dray for Father's Day. (SHHHH... They don't know yet.) Anyway they say "Best Dad/Grandpa Hands Down." They came with red, blue, and yellow paint for the kids hand prints. Well with Dylan being at Daddy's most of last week, we haven't had a chance to work on them. So this morning, after breakfast we started working on them. And boy did we have fun. For some reason I didn't think of doing both of the shirts at the same time, so every kid went through the painting and washing routine twice. I made it hard for myself and I will definitely think before I start next time. Dylan wanted one of his hands green on Papa's shirt and one purple on his Daddy's shirt. So we had to mix some colors. We didn't have a mess until Nathan got into the paint. He had one hand blue and one yellow. We did the yellow first, then we did the blue. Before I could make it to the bathroom with him, he had rubbed my arm from my elbow down to my hand with the blue paint. Then he decided to touch his leg. Anyway we had blue paint every where. We did Jordan's feet since he stays fisted most of the time. The first go around he did great, but the second time he decided to get the yellow paint all over me and him. We did have a lot of fun though. It probably took around an hour to an hour and a half from start to finish. I'm sure they'll both love them. I'll post pictures of the shirts tomorrow.

They're Finally Here!

Yesterday was therapy day, as it was Thursday again. To my surprise Nathan's wheelchair and gait trainer had finally came in. Cindy put Nathan in his wheelchair first thing so the guy from Carolina Homecare could make any adjustments nessesary. He LOVED it! He had a big smile on his face most of the time. Then she put him over into his gait trainer. I managed to snap a few pictures of him in it. While they were working with him I happened to think "How in the world was I going to get everything to the van?" I took Jordan so I had the double stroller too. The guy was still working on the wheelchair when it was time to go to speech therapy so we went over to Miss Laura's room. Stacey came in about 15 minutes later and said that she had a man to help us, while his daughter was having her therapy session. She said she would wait until closer to the end of speech therapy to come get me. Well I got thirsty so I took Jordan and went to the cafe while Nathan was working. As I was leaving the cafe Stacey met me at the door with the stroller, wheelchair and gait trainer. Luckily that man was with Stacey because I don't know if I could have made everything fit in the van. Stacey went in to get Nathan and I pulled up front to pick him up. He couldn't understand why Miss Stacey was carrying him outside. I will have more pictures of Nathan in his new "toys" soon.

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I have posted some pictures from Waffle House last night. We went there for dinner and one of the waitresses gave Dylan & Nathan a hat. Nathan sat in his wheelchair at the table. He liked it but I think he still favors the high chair. Which I don't blame him. The high chair looks more comfortable.

Happy Birthday & Merry Christmas to Me!

I got my birthday and Christmas present from Momma Tuesday. My new Dell Laptop. When I got to her house to pick it up she had wrapped it in a flower paper for my birthday and Christmas wrap under that. I was sooo happy to get it! It has more memory than my Gateway desktop. She also got me a wireless router. Which hasn't been too easy for me to get up and going. For some reason I have to have a USB cable connected to be able to get on the internet. And with wireless routers you can't have a USB cable. Only a Ethernet cable. If anyone knows how I can fix my problem please let me know. I have spent the whole day trying to get the problem fixed. I just don't know what else I can do. Here are some pictures of my new laptop. I'm so happy I had to share it with everyone. THANK YOU MOMMA!!!

Vaccinations

Jordan did very well yesterday with his shots. She stuck his right leg first and he didn't cry at all. She stuck the left leg twice. He did cry that time. She said that those did burn. His face and head turned bright red. But he only cried for a minute. I gave him Tylenol twice yesterday. He slept well last night, and woke up in a good mood this morning.

Beautiful Works of Art

I've been meaning to share this with you all for a little over a month now. Dylan made this beautiful clay bowl in art this past school year. I love when he brings his work home from school. He is very creative.









This is Dylan's festively colored tiger mask. Before school ended, they sent home an order form for an activity kit to keep kids working through the summer while making it fun for them. I sat with him Sunday while he worked on most of it. He wanted me to help some so I did a little coloring and glitter work. We had a lot of fun. He said he isn't finished with it yet. He wants to do some touch up work. I will post a picture when he completes it.


(His name is Lightening McQueen from the movie Cars.)

Happy Birthday

Happy Birthday Hope! We love ya! Have a Great day!

We Have Air...and Cookies!

Maintenance came out and got our air back on this afternoon. They had to adjust the coolant. It feels so much better in here tonight. The coolest it got in here over night was 74 degrees. By 9:00am it was 77 again. The boys and I went to Daddy & Judy's and spent the day with them. Then Dylan and I went to the mall, while we were there we went to The Cookie Company. Dylan got a chocolate chip cookie with frosting on top, and he ate the whole thing. When he was done he said he didn't want anymore cookies. Dylan and Nathan are staying with Daddy and Judy tonight because Jordan has his 4 month shots tomorrow at 3:00. I'll let you know how it goes.