Here's something that I get to see that most of you don't:
When we take Miles places when he's in his wheelchair I get to see people at their best. It's so neat to watch people get out of our way at Wal-Mart. Even during the busy Christmas shopping season people did their best to give us the right of way. They give us plenty of room when they see us coming with Miles. I get to see people's face soften as they look at Miles. They smile at him. Some touch his head and say kind words to him. I hear comments like, "Oh, poor fella" or "How adorable" and things like that. People at church kiss him when they pass. It's all very sweet.
I always enjoy the special attention we get when we take our whole family somewhere with Miles in his wheelchair. Melody who is three is usually the one pushing Miles down the aisle. People get a kick out of that. She looks so sweet pushing her little brother. It's been a treat to me to see so many kind hearted people look at my son in such a tender way.
The other day I had a man come over from the medical supply company that we got the wheelchair from. He had to make some adjustments to the wheelchair for Miles. When it came in Miles was still in his spica cast so we couldn't get it fitted at the time. The man came over and he was working on the wheelchair when he said, "This chair reminds me of the very first wheelchair that I worked on about six years ago. It was tiny like this one, but it was for a girl. She had that thing in gold. They said that she would never walk or talk or sit up or anything, and I thought to myself...give the girl a chance! Well, this week her family brought in that chair to donate it because the girl didn't need it anymore. She was running around everywhere. That made my day!" That man's whole face was so bright as he talked about that little girl. I told him that I look forward to the day when I can bring in Miles' chair to donate because he doesn't need it anymore.
What a glorious day that will be! Until then I will enjoy the gentleness of people as they watch us stroll down the aisles at Wal-Mart.
Jan 1 Jan 2 Jan 3 our church is having a three day fast and around the clock prayer for 5 people in our body that need healing miracles. Miles is one of those people. Hopefully I will get to turn that wheelchair in on Jan. 4.
Saturday, December 30, 2006
Wednesday, December 27, 2006
UPDATE
About a month ago I got an unexpected call from Miles’ pediatrician, Dr. Wiley. He called because he wanted to have a sit down meeting with Randy and I to discuss all the questions that we have about Miles. He told me that he wanted to “hear my heart” about all the things going on with Miles. He said that it would be great for us to have an unlimited time to talk together and make a plan for Miles. I thought that was a great idea. Dr. Wiley is an amazing man. I’m so thankful for how great he has been to our family. He’s been our only pediatrician for all of our children. He is a wise man of God.
Well, today was the big meeting. I had my huge list of things to talk about. I had my “Top 3” written down and a few other concerns so I thought I would share them with you.
Meeting with Dr. Wiley questions and concerns:
My Top 3 Concerns
1. His body tone
*increase medication?
*Is Artane what he would suggest to control Miles’ tone?
*Can we possibly keep his body from being twisted?
*Should we request Botox from Dr. Marks (neurologist) in January?
Answers: I should ask Dr. Marks for the Botox for Miles. Also I should talk to Dr. Marks about increasing medication.
2. Seizures
*Should we even try to stop them?
*He varies from not having any visible seizures to having 15-20 a day.
* Strange things seem to trigger the seizures-change of environment, temperature, too sleepy
Answers:
We need to talk to Dr. Marks on next visit about how many seizures a day or week would be a realistic expectation for Miles to have. Dr. Wiley does not expect that Miles will be able to be seizure free. He thinks that we need to have realistic expectations on what is the norm for Miles to have. For example if Dr. Marks says that for Miles to have 1-3 a day or 1-3 a week then we will know if he has that many everything is still fine. Of course having seizures is not fine, but with the damage to his brain…nothing is fine. He also said that there are so many medications that could control seizures. He said that we would have to decide how deep into medicine changes we would like to go. Miles is taking one medication twice a day right now to control seizures. Dr. Wiley said that he could be taking three medicines a day to try to control them and not have any better luck than we are now. His take was the less the better, but ultimately it was up to us. I agree with him on less is better.
He talked about how change of environment and temperatures were normal for causing seizures. The thing is that we are a very busy family, and trying to avoid going places so he won’t have a seizure is pretty ridiculous. We can’t seem to do anything to prevent the seizures so we’re just going to move on with life and deal with them when they come on. Miles had one in the office today with Dr. Wiley. We paused and then continued with the appointment. I hate them, but right now I don’t see that there is anything we can do.
Randy asked if the seizures are further damaging Miles. Dr. Wiley said that Miles’ brain is damaged. There are parts of his brain that are missing. As far as the injured part of his brain it can’t get more injured. The parts that are left can be taken away by seizures. The seizures could delay what development that could occur if the seizures are as out of control as the 15-20 seizures a day.
Anyway, a lot of that seizure and body tone stuff we will talk to Miles’ neurologist in Ft. Worth next month.
3.Avoiding the Feeding Tube and Nutrition
*Right now the spitting up is little to none. It varies from little to almost all his food.
*He eats fantastic by mouth. He eats solid foods about 4 times a day. It takes him awhile to eat, but he gets it down.
*Fluids is a little tricky, and this is what he seems to have more trouble with. The Thick It is helping.
*Is it possible or probable that he will be able to avoid getting a feeding tube? I guess I need some encouragement that it can be done or I need to be told that it’s the best thing for Miles.
*How long before I can’t give him a bottle for liquids? And then what?
Answers:
He needs more liquid that he’s getting right now. He needs 24-32 ounces a day. (This might be difficult!) Is it possible for Miles to go without a feeding tube? Yes, as long as he continues eating well like he does. Also, as long as he does not start aspirating. If this happens then we will have to do something. Dr. Wiley said that it’s easy to tell that Miles is not malnutritioned. He looks good. He’s small, but that’s normal for the other kids like Miles. Dr. Wiley wants us to see a doctor in Ft. Worth in the next few months…no rush, but he wants us to see a gastro doctor so we can begin to build that relationship in case Miles ever does need to get a feeding tube. He thought it would be a good idea to get all the information that we can so that if that time ever comes that we will be informed and not overwhelmed. I think that this is a good idea.
Dr. Wiley said that he didn’t think Miles needed a feeding tube at this time, and he would tell us if he thought he did. This was encouraging to me! He respects that Randy and I want to do everything we can to avoid this procedure. Dr. Wiley also said that he doesn’t care how long Miles is on the bottle for liquids. He said, “The bottle is better than the G-Button.”
So, those were my 3 main concerns. I had a few minor things to talk about.
He’s been having nose bleeds, but Dr. Wiley said that was normal for this time of year. I got the humidifier/nose drops answer.
Also, he’s been having lots of ear infections, but Dr. Wiley wasn’t too concerned about that.
He did talk to Randy and I about discussing a DNR status for Miles. (How far we want to go in a medical emergency if he’s not breathing on his own.) That’s a rough summary I’m sure.
Then, the thing Randy wanted to talk about was what is Miles’ diagnoses. It’s been two years and we’ve seen a million things on charts describing Miles’ condition. Dr. Wiley said that Miles has Hypoxemic ischemic encephalopathy. Try to say that five times fast! Hey, try to say that one time fast! Well, that’s a mouth full. Randy asked if Miles had cerebral palsy. Dr. Wiley agreed that he did have cerebral palsy, but that diagnoses is a vast range of problems, with Miles’ cast the worse end of that that. Randy said that he didn’t care much for titles, but some people want to have an answer to what is wrong with Miles and he didn’t know what to say. Dr. Wiley told us that for the average person on the streets cerebral palsy would be just fine, and if they asked what else is wrong with him that we could say, “That’s enough.”
Since you’re not the average person I guess I can tell you that Miles is diagnosed as having Hypoxemic ischemic encephalopathy. Whatever.
One other thing we talked about today was the fact that he wanted me, not Christy to call the office when Miles is having new problems, old problems, or just a cold. It has nothing to do with Christy. They have a long relationship. He’s doing this with all his home health patients. He wants to stay close to the parents instead of home health becoming the main ones that he talks to. He thinks it’s important for him and parents to stay on the same page. I agree with this. I talked to Christy about this today and she took it really well.
So, that was the appointment. I left there feeling pretty good about everything. It was nice to get on the same page with Dr. Wiley. I didn’t leave there with any new revelation, but that’s okay. Randy and I were able to express that we are believing the best for Miles. We know that apart from God performing a miracle that things are not going to get better. We told him that we are believing that God is going to heal Miles, and until then we want to take the best care possible of him. Dr. Wiley totally agreed.
Before I go I thought you might get a kick out of a letter that Miles’ physical therapist sent with me to give to Dr. Wiley about her concerns for Miles. JoBeth is an awesome woman. I got a kick out of her medical letter that she hand wrote in my journal today. See if you can follow it all.
Dr. Wiley,
My main concern with Miles is the prevention of deformity. His spine position is worsening, he demonstrates axial rotation to the right, slight curvature, and I am worried about the position of the sacrum, his pelvis is really anteriorly tilted.
He also holds his head to the right a majority of the time when (word I can’t read)! He has calluses at the T-L joint and sacrum. He is being seen by me two per week for 30 minutes, he is tolerating prone positioning on wedge, and he has a Lecky Advance Seat, wheelchair, and standing frame (but is not allowed to use it at this time). He wears braces on his feet the majority of the day and of course his hip abduction brace all day except 6 hours.
Miles loves working on the Swiss ball.
Progress is slow, but he is tolerating everything we do.
Feel free to call me for anything.
Thanks,
JoBeth
Anyway, there is my medical moment for the day. Please don’t forget to encourage me in some way. I was glad about the whole thing, but I came home and crashed on my bed after such a long and serious appointment. Our appointment was at 11:00 and we got home at 2:00. Just say things like…It’s going to be worth it, and this is the reality but it’s not the truth, and I’m a good Mom, and stuff like that. I don’t mind spoon feeding you responses! :)
Well, today was the big meeting. I had my huge list of things to talk about. I had my “Top 3” written down and a few other concerns so I thought I would share them with you.
Meeting with Dr. Wiley questions and concerns:
My Top 3 Concerns
1. His body tone
*increase medication?
*Is Artane what he would suggest to control Miles’ tone?
*Can we possibly keep his body from being twisted?
*Should we request Botox from Dr. Marks (neurologist) in January?
Answers: I should ask Dr. Marks for the Botox for Miles. Also I should talk to Dr. Marks about increasing medication.
2. Seizures
*Should we even try to stop them?
*He varies from not having any visible seizures to having 15-20 a day.
* Strange things seem to trigger the seizures-change of environment, temperature, too sleepy
Answers:
We need to talk to Dr. Marks on next visit about how many seizures a day or week would be a realistic expectation for Miles to have. Dr. Wiley does not expect that Miles will be able to be seizure free. He thinks that we need to have realistic expectations on what is the norm for Miles to have. For example if Dr. Marks says that for Miles to have 1-3 a day or 1-3 a week then we will know if he has that many everything is still fine. Of course having seizures is not fine, but with the damage to his brain…nothing is fine. He also said that there are so many medications that could control seizures. He said that we would have to decide how deep into medicine changes we would like to go. Miles is taking one medication twice a day right now to control seizures. Dr. Wiley said that he could be taking three medicines a day to try to control them and not have any better luck than we are now. His take was the less the better, but ultimately it was up to us. I agree with him on less is better.
He talked about how change of environment and temperatures were normal for causing seizures. The thing is that we are a very busy family, and trying to avoid going places so he won’t have a seizure is pretty ridiculous. We can’t seem to do anything to prevent the seizures so we’re just going to move on with life and deal with them when they come on. Miles had one in the office today with Dr. Wiley. We paused and then continued with the appointment. I hate them, but right now I don’t see that there is anything we can do.
Randy asked if the seizures are further damaging Miles. Dr. Wiley said that Miles’ brain is damaged. There are parts of his brain that are missing. As far as the injured part of his brain it can’t get more injured. The parts that are left can be taken away by seizures. The seizures could delay what development that could occur if the seizures are as out of control as the 15-20 seizures a day.
Anyway, a lot of that seizure and body tone stuff we will talk to Miles’ neurologist in Ft. Worth next month.
3.Avoiding the Feeding Tube and Nutrition
*Right now the spitting up is little to none. It varies from little to almost all his food.
*He eats fantastic by mouth. He eats solid foods about 4 times a day. It takes him awhile to eat, but he gets it down.
*Fluids is a little tricky, and this is what he seems to have more trouble with. The Thick It is helping.
*Is it possible or probable that he will be able to avoid getting a feeding tube? I guess I need some encouragement that it can be done or I need to be told that it’s the best thing for Miles.
*How long before I can’t give him a bottle for liquids? And then what?
Answers:
He needs more liquid that he’s getting right now. He needs 24-32 ounces a day. (This might be difficult!) Is it possible for Miles to go without a feeding tube? Yes, as long as he continues eating well like he does. Also, as long as he does not start aspirating. If this happens then we will have to do something. Dr. Wiley said that it’s easy to tell that Miles is not malnutritioned. He looks good. He’s small, but that’s normal for the other kids like Miles. Dr. Wiley wants us to see a doctor in Ft. Worth in the next few months…no rush, but he wants us to see a gastro doctor so we can begin to build that relationship in case Miles ever does need to get a feeding tube. He thought it would be a good idea to get all the information that we can so that if that time ever comes that we will be informed and not overwhelmed. I think that this is a good idea.
Dr. Wiley said that he didn’t think Miles needed a feeding tube at this time, and he would tell us if he thought he did. This was encouraging to me! He respects that Randy and I want to do everything we can to avoid this procedure. Dr. Wiley also said that he doesn’t care how long Miles is on the bottle for liquids. He said, “The bottle is better than the G-Button.”
So, those were my 3 main concerns. I had a few minor things to talk about.
He’s been having nose bleeds, but Dr. Wiley said that was normal for this time of year. I got the humidifier/nose drops answer.
Also, he’s been having lots of ear infections, but Dr. Wiley wasn’t too concerned about that.
He did talk to Randy and I about discussing a DNR status for Miles. (How far we want to go in a medical emergency if he’s not breathing on his own.) That’s a rough summary I’m sure.
Then, the thing Randy wanted to talk about was what is Miles’ diagnoses. It’s been two years and we’ve seen a million things on charts describing Miles’ condition. Dr. Wiley said that Miles has Hypoxemic ischemic encephalopathy. Try to say that five times fast! Hey, try to say that one time fast! Well, that’s a mouth full. Randy asked if Miles had cerebral palsy. Dr. Wiley agreed that he did have cerebral palsy, but that diagnoses is a vast range of problems, with Miles’ cast the worse end of that that. Randy said that he didn’t care much for titles, but some people want to have an answer to what is wrong with Miles and he didn’t know what to say. Dr. Wiley told us that for the average person on the streets cerebral palsy would be just fine, and if they asked what else is wrong with him that we could say, “That’s enough.”
Since you’re not the average person I guess I can tell you that Miles is diagnosed as having Hypoxemic ischemic encephalopathy. Whatever.
One other thing we talked about today was the fact that he wanted me, not Christy to call the office when Miles is having new problems, old problems, or just a cold. It has nothing to do with Christy. They have a long relationship. He’s doing this with all his home health patients. He wants to stay close to the parents instead of home health becoming the main ones that he talks to. He thinks it’s important for him and parents to stay on the same page. I agree with this. I talked to Christy about this today and she took it really well.
So, that was the appointment. I left there feeling pretty good about everything. It was nice to get on the same page with Dr. Wiley. I didn’t leave there with any new revelation, but that’s okay. Randy and I were able to express that we are believing the best for Miles. We know that apart from God performing a miracle that things are not going to get better. We told him that we are believing that God is going to heal Miles, and until then we want to take the best care possible of him. Dr. Wiley totally agreed.
Before I go I thought you might get a kick out of a letter that Miles’ physical therapist sent with me to give to Dr. Wiley about her concerns for Miles. JoBeth is an awesome woman. I got a kick out of her medical letter that she hand wrote in my journal today. See if you can follow it all.
Dr. Wiley,
My main concern with Miles is the prevention of deformity. His spine position is worsening, he demonstrates axial rotation to the right, slight curvature, and I am worried about the position of the sacrum, his pelvis is really anteriorly tilted.
He also holds his head to the right a majority of the time when (word I can’t read)! He has calluses at the T-L joint and sacrum. He is being seen by me two per week for 30 minutes, he is tolerating prone positioning on wedge, and he has a Lecky Advance Seat, wheelchair, and standing frame (but is not allowed to use it at this time). He wears braces on his feet the majority of the day and of course his hip abduction brace all day except 6 hours.
Miles loves working on the Swiss ball.
Progress is slow, but he is tolerating everything we do.
Feel free to call me for anything.
Thanks,
JoBeth
Anyway, there is my medical moment for the day. Please don’t forget to encourage me in some way. I was glad about the whole thing, but I came home and crashed on my bed after such a long and serious appointment. Our appointment was at 11:00 and we got home at 2:00. Just say things like…It’s going to be worth it, and this is the reality but it’s not the truth, and I’m a good Mom, and stuff like that. I don’t mind spoon feeding you responses! :)
Sunday, December 24, 2006
Merry Christmas Eve!
This morning we stayed in bed a little too long. The blanket was very snuggly. To make it to church on time we had a lot of work ahead of us. Randy said he was thinking about us staying home today. We always go to church! We don't ever think about not going. We go and we love it. I figure he was thinking that we were going to sing Christmas Carols and guard our kids from burning their hair off at the candle light service so why bother going. As I was laying there I started thinking about how Jesus came to earth as a baby and what all that meant. It really is a miracle. A lot people have heard the Christmas story all their lives, but it really is an amazing thing. I started thinking about what a celebration Jesus' birth was. My thought was, "I want to celebrate this wonderful day with my family!" Of course I meant my church family. I pictured a few people from our church and I just wanted to be with them. Christmas is "our" holiday! Jesus' birth, death and resurrection is why we do all the things we do. This is why we love God like we do. With all these things going on in my head I just had to go this morning! When I told Randy that I wanted to be with my "family" this Christmas morning he got out of bed and worked very hard to help us all get to church 3 minutes late.
I loved church today! I don't know if it was because my expectations were so high or if everything was really as beautiful as it was, but I fell in love with our church body once again. Everyone looked so beautiful and full of life. I saw so many people that I have a personal relationship with. So many people there know the real me!
A couple that I hardly know had a wrapped present for Miles. (The couple is Kathy and her husband. She's the one that's a cop.) I told you I don't know them very well. Anyway it's a baseball bat. We didn't open it. They told us. The husband must have felt led to buy it for Miles. He told us that Miles would be swinging it in no time.
Another sweet thing was the candlelight service. When we arrived the Ushers handed out candles to our whole family. (except Miles) I mean they gave my husband and I one, my 8 year old one, my 6 year old one, my 4 year old one and my 3 year old one. Then David smiled and told me to watch out for those candles. During worship Spencer, Jocie and Melody thought the candles were for lip syncing to the Christmas carols. I was cracking up. Spencer and Jocie were being so funny. Randy leaned over and asked me if I thought that was appropriate. I figured that them singing with the candles like a mic was as appropriate as the ushers giving them one in the first place so I just let them sing. It was so cute. When our candles finally were lit I was busy watching the four to make sure they were not going to burn their hair off. The whole thing was so funny. I wish I had taken a video camera of them all sitting there with their candle. As I was watching them I turned to look at Miles and Trish had come over and leaned next to Miles wheelchair. She was loving on him and I think showing him the candle. It melted my heart. There's something so special about seeing other people love on your children.
Speaking of that...let's take a break from the candle light service for a minute. Yesterday Tim and Erica called me yesterday and asked if they could take three of my kids to the movies to see Night at the Museum. That blessed me so much! Tim and Erica picked up the kids and had them for hours. They bought them candy, popcorn, movie tickets and walked around the mall with them. The whole time they were gone I felt so happy. I asked Randy why I felt so good about Tim and Erica taking the kids and I realized it was because they were loving on my children and that makes me feel loved. It's nice when other people appreciate who your children are. Anyway, that was special to me.
Back to candle light service: Trish was being so sweet, and I was watching the kids get a little wild with the candles. Melody who is three was dripping wax on the chair so Randy decided he needed to blow out her candle. I saw him take it, then blow it out, and I was expecting to see her start crying, but when he handed her the blown out candle she thought it was the funniest thing. She kept looking at me with the funniest looks on her face like, "Hey, look at my silly candle." She loved having the blown out candle. The whole thing made me love being with my kids.
We did offering differently today. Instead of the ushers coming by with a bucket we went up to the front to give our offering in a basket. When we were walking up there they had the most beautiful music playing. I loved it. I walked up there with my boys and I was helping another little girl get back to her seat. When I sat back down in my seat and got settled my eyes got a glance of the stage and there were people up there doing the song I was hearing! I THOUGHT IT WAS A CD!!! It was so amazing. Cherith was singing. Tim was playing the sax. It was perfect. I almost couldn't believe my ears! They were flawless. Those two were better than any Christmas song I heard on the radio all season! I would have bought their CD.
There were other things that made this morning special, but I must get ready for our Christmas Eve party. I just had to take a minute to write about how much I love Jesus, our church family, my own family and this wonderful season we call Christmas time. It really is the most wonderful time of the year!
I almost forgot to write about the best part of the service and the reason I began this post!
Before communion our Pastor was talking about how important it is to take communion with a clean heart. Randy and I are very serious about the boys taking communion only if they understand what they are doing. Before we went up to communion I asked the boys if they had asked God to forgive their sins. Spencer said he had not so he was praying. Joey told me that he did during the candle light service. He looked at me very seriously and said that during the candle light service he felt closer to God. What a wonderful day! This is the first time any of the kids have felt the presence of God in the adult service! It made me so happy for Joey and for Jesus!
I loved church today! I don't know if it was because my expectations were so high or if everything was really as beautiful as it was, but I fell in love with our church body once again. Everyone looked so beautiful and full of life. I saw so many people that I have a personal relationship with. So many people there know the real me!
A couple that I hardly know had a wrapped present for Miles. (The couple is Kathy and her husband. She's the one that's a cop.) I told you I don't know them very well. Anyway it's a baseball bat. We didn't open it. They told us. The husband must have felt led to buy it for Miles. He told us that Miles would be swinging it in no time.
Another sweet thing was the candlelight service. When we arrived the Ushers handed out candles to our whole family. (except Miles) I mean they gave my husband and I one, my 8 year old one, my 6 year old one, my 4 year old one and my 3 year old one. Then David smiled and told me to watch out for those candles. During worship Spencer, Jocie and Melody thought the candles were for lip syncing to the Christmas carols. I was cracking up. Spencer and Jocie were being so funny. Randy leaned over and asked me if I thought that was appropriate. I figured that them singing with the candles like a mic was as appropriate as the ushers giving them one in the first place so I just let them sing. It was so cute. When our candles finally were lit I was busy watching the four to make sure they were not going to burn their hair off. The whole thing was so funny. I wish I had taken a video camera of them all sitting there with their candle. As I was watching them I turned to look at Miles and Trish had come over and leaned next to Miles wheelchair. She was loving on him and I think showing him the candle. It melted my heart. There's something so special about seeing other people love on your children.
Speaking of that...let's take a break from the candle light service for a minute. Yesterday Tim and Erica called me yesterday and asked if they could take three of my kids to the movies to see Night at the Museum. That blessed me so much! Tim and Erica picked up the kids and had them for hours. They bought them candy, popcorn, movie tickets and walked around the mall with them. The whole time they were gone I felt so happy. I asked Randy why I felt so good about Tim and Erica taking the kids and I realized it was because they were loving on my children and that makes me feel loved. It's nice when other people appreciate who your children are. Anyway, that was special to me.
Back to candle light service: Trish was being so sweet, and I was watching the kids get a little wild with the candles. Melody who is three was dripping wax on the chair so Randy decided he needed to blow out her candle. I saw him take it, then blow it out, and I was expecting to see her start crying, but when he handed her the blown out candle she thought it was the funniest thing. She kept looking at me with the funniest looks on her face like, "Hey, look at my silly candle." She loved having the blown out candle. The whole thing made me love being with my kids.
We did offering differently today. Instead of the ushers coming by with a bucket we went up to the front to give our offering in a basket. When we were walking up there they had the most beautiful music playing. I loved it. I walked up there with my boys and I was helping another little girl get back to her seat. When I sat back down in my seat and got settled my eyes got a glance of the stage and there were people up there doing the song I was hearing! I THOUGHT IT WAS A CD!!! It was so amazing. Cherith was singing. Tim was playing the sax. It was perfect. I almost couldn't believe my ears! They were flawless. Those two were better than any Christmas song I heard on the radio all season! I would have bought their CD.
There were other things that made this morning special, but I must get ready for our Christmas Eve party. I just had to take a minute to write about how much I love Jesus, our church family, my own family and this wonderful season we call Christmas time. It really is the most wonderful time of the year!
I almost forgot to write about the best part of the service and the reason I began this post!
Before communion our Pastor was talking about how important it is to take communion with a clean heart. Randy and I are very serious about the boys taking communion only if they understand what they are doing. Before we went up to communion I asked the boys if they had asked God to forgive their sins. Spencer said he had not so he was praying. Joey told me that he did during the candle light service. He looked at me very seriously and said that during the candle light service he felt closer to God. What a wonderful day! This is the first time any of the kids have felt the presence of God in the adult service! It made me so happy for Joey and for Jesus!
Thursday, December 21, 2006
Christmas Questions
When will I learn?
Why can't I just buy presents at a store like everyone else does?
Why do I insist on making things when I'm totally busy with regular life stuff?
Why are sewing machines contrary when you need them most?
How many "Last" trips am I going to have to make to Hobby Lobby?
Why can't I just buy presents at a store like everyone else does?
Why do I insist on making things when I'm totally busy with regular life stuff?
Why are sewing machines contrary when you need them most?
How many "Last" trips am I going to have to make to Hobby Lobby?
Friday, December 15, 2006
BLESSED
Yesterday I was mildly emotional about Miles being approved for 40 hours of nurse care a week.
That’s all gone now.
Rachel brought over a book Wednesday morning that she let me borrow. I can’t remember the title now, and I already let my brother in law borrow it from me so I don’t have the title for you, but it was amazing! I read the whole thing on Wednesday and Thursday. It’s about a husband and wife missionary team. They live in Africa and have planted a ton of churches, raised a ton of kids, see a ton of miracles and led a ton of people to the Lord. They are completely sold out to Jesus. This couple has been in Africa since the 70’s and they are still there. They have taken care of a ton of children, seen a ton of people come to the Lord, seen a ton of miracles, and they have spent their lives loving Jesus and His people.
The book is about how desperate the people are that they see every day. Most of them have nothing, but they seek the Lord in a way that I never have. They want all of Him more than anything. Sometimes I complain about having to get five children ready for church, but some of these people have to walk for a couple of days to church. Some leave for their journey without any food at all. Some don’t even know if they will have the strength to make it back home.
Well, yesterday I was feeling a little down about the whole nurse care thing. Then I saw Melody get a blanket and lay it down on the floor. The blanket that she got had a built in pillow. As I watched her make a pallet on the floor of our living room I had a thought. I don’t know if the Lord revealed this to me or if I thought of it on my own, but as I watched her I thought about how millions of people in this world have never laid down on such a luxurious blanket in their whole lives.
I was humbled.
I felt like a pathetic brat for being upset about the nurse care that was provided for me. The woman that wrote the book told about how in one week six babies died in her arms. She was comforted by the fact that they died being loved. These babies died of horrible things like cholera, malaria, AIDS, running sores and worms all because they didn’t have the medical care that they needed.
I have a home that is beautiful, huge and warm. I have some of the best medical care on the planet. I have a bed that is fit for a King! What do I have to complain about?
This morning I woke up in my soft and cozy bed and it felt so great. The first thing I thought about was all the beautiful people I read about yesterday that have never felt such luxury. My heart broke for them again. I thanked the Lord for everything he has ever given me…Especially the nurse care.
That’s all gone now.
Rachel brought over a book Wednesday morning that she let me borrow. I can’t remember the title now, and I already let my brother in law borrow it from me so I don’t have the title for you, but it was amazing! I read the whole thing on Wednesday and Thursday. It’s about a husband and wife missionary team. They live in Africa and have planted a ton of churches, raised a ton of kids, see a ton of miracles and led a ton of people to the Lord. They are completely sold out to Jesus. This couple has been in Africa since the 70’s and they are still there. They have taken care of a ton of children, seen a ton of people come to the Lord, seen a ton of miracles, and they have spent their lives loving Jesus and His people.
The book is about how desperate the people are that they see every day. Most of them have nothing, but they seek the Lord in a way that I never have. They want all of Him more than anything. Sometimes I complain about having to get five children ready for church, but some of these people have to walk for a couple of days to church. Some leave for their journey without any food at all. Some don’t even know if they will have the strength to make it back home.
Well, yesterday I was feeling a little down about the whole nurse care thing. Then I saw Melody get a blanket and lay it down on the floor. The blanket that she got had a built in pillow. As I watched her make a pallet on the floor of our living room I had a thought. I don’t know if the Lord revealed this to me or if I thought of it on my own, but as I watched her I thought about how millions of people in this world have never laid down on such a luxurious blanket in their whole lives.
I was humbled.
I felt like a pathetic brat for being upset about the nurse care that was provided for me. The woman that wrote the book told about how in one week six babies died in her arms. She was comforted by the fact that they died being loved. These babies died of horrible things like cholera, malaria, AIDS, running sores and worms all because they didn’t have the medical care that they needed.
I have a home that is beautiful, huge and warm. I have some of the best medical care on the planet. I have a bed that is fit for a King! What do I have to complain about?
This morning I woke up in my soft and cozy bed and it felt so great. The first thing I thought about was all the beautiful people I read about yesterday that have never felt such luxury. My heart broke for them again. I thanked the Lord for everything he has ever given me…Especially the nurse care.
Thursday, December 14, 2006
40 Hours
Today Miles was approved for 40 hours a week of Home health nurse care.
Starting Tuesday Christy will be here from 7:45 am to 3:45 pm.
I'm trying to control my emotions about this. Of course I'm thankful at the freedom that this will bring. Also, it's really not much more time then she's already here. She usually leaves at 12:45 so it's just a few more hours a day.
I guess the thing is that I will have someone in my home for 40 hours a week. Also, it seems strange that someone else will be taking care of Miles so much. Then there's the whole thing of the thought that my son actually requires nurse care.
I'm pretty tired right now. It's been a very busy day. I think I will write this when my head is more clear.
Starting Tuesday Christy will be here from 7:45 am to 3:45 pm.
I'm trying to control my emotions about this. Of course I'm thankful at the freedom that this will bring. Also, it's really not much more time then she's already here. She usually leaves at 12:45 so it's just a few more hours a day.
I guess the thing is that I will have someone in my home for 40 hours a week. Also, it seems strange that someone else will be taking care of Miles so much. Then there's the whole thing of the thought that my son actually requires nurse care.
I'm pretty tired right now. It's been a very busy day. I think I will write this when my head is more clear.
Tuesday, December 12, 2006
Monday, December 11, 2006
love the book
I'm reading a book called The Supernatural ways of ROYALTY. It's written by Bill Johnson & Kris Vallatton. I got it last night from Bryan & Becky at our church leadership party.
Even the Foreword spoke to me. It said, "Much of what we desire in life is found in the tension of conflicting realities."
I've been saying this same thing over and over (even in my dreams) just not in one powerful sentence.
My desire is for Miles to be fully restored. The tension is that my Bible says that Jesus is a healer, but my conflicting reality is that my son is disabled.
I'm excited to see how the book resolves this conflict.
Here's another thing that I have to share:
Page 55
Forgiveness, in effect, changes the past. God's journal records our life from the perspective of His forgiveness and our faith. His Book of Remembrance doesn't contain our history of sin and stupidity. Consider Sarah, Abraham's wife. In Genesis 18 she, "Laughed within herself saying, "After I have grown old, shall I have pleasure my Lord, being so old also?"
And the Lord said to Abraham, "Why did Sarah laugh? Saying, "Shall I bear a child since I am old?" Is anything too hard for the Lord? At the appointed time, I will return to you, according to the time of life and Sarah will have a son."
But Sarah denied it, saying, "I did not laugh." For she was afraid.
And He said, "No, you did laugh."
The Hebrew word for laughter in this verse tells us that she didn't give a sheepish chuckle. She actually mocked God and what He had said, and then to make matters worse by lying to the Lord about doing so. But Hebrews 11:11 says, "By faith, Sarah herself also received strength to conceive seed and she bore a child when she was past the age because she judged Him faithful who had promised."
This is the same woman! What happened? Apparently she repented, turning her heart to what God had declared to be her destiny. In doing so God rewrote her history, excluding her sin that is recorded in Scripture. What's written in Hebrews 11 shows us how God records our life's events in His Book of Remembrance. God's wrote her story in such a way as to emphasize what pleases Him the most-her faith. It seems as if He is boasting all over Heaven about Sarah, "Did you see that courage and that great faith? Here's a lady-she can't bear a child, but she knows I'm faithful!" You can see Him talking to the Scribe angel, "Make sure you put it like this..."That's my girl! She believed me-others wouldn't have, but she did!"
My response: Lord, I want you to say this about me! Could you do the same for me? Could I change my mind and know that you will heal Miles, and you would rewrite my history? Would you forgive all my previous doubts and even the times I've laughed in unbelief?
This really is my desire! I want to change my mind and never turn back to unbelief. I know that life is found in believing. I know that faith pleases God. I want it so bad that my heart aches for it. I also know that having faith/hope also makes the heart sick. Proverbs 13:12 says, "Hope deferred makes the heart sick, but a longing fulfilled is a tree of life." I have to remember that the longing fulfilled is so worth the heartache in the mean time.
Even the Foreword spoke to me. It said, "Much of what we desire in life is found in the tension of conflicting realities."
I've been saying this same thing over and over (even in my dreams) just not in one powerful sentence.
My desire is for Miles to be fully restored. The tension is that my Bible says that Jesus is a healer, but my conflicting reality is that my son is disabled.
I'm excited to see how the book resolves this conflict.
Here's another thing that I have to share:
Page 55
Forgiveness, in effect, changes the past. God's journal records our life from the perspective of His forgiveness and our faith. His Book of Remembrance doesn't contain our history of sin and stupidity. Consider Sarah, Abraham's wife. In Genesis 18 she, "Laughed within herself saying, "After I have grown old, shall I have pleasure my Lord, being so old also?"
And the Lord said to Abraham, "Why did Sarah laugh? Saying, "Shall I bear a child since I am old?" Is anything too hard for the Lord? At the appointed time, I will return to you, according to the time of life and Sarah will have a son."
But Sarah denied it, saying, "I did not laugh." For she was afraid.
And He said, "No, you did laugh."
The Hebrew word for laughter in this verse tells us that she didn't give a sheepish chuckle. She actually mocked God and what He had said, and then to make matters worse by lying to the Lord about doing so. But Hebrews 11:11 says, "By faith, Sarah herself also received strength to conceive seed and she bore a child when she was past the age because she judged Him faithful who had promised."
This is the same woman! What happened? Apparently she repented, turning her heart to what God had declared to be her destiny. In doing so God rewrote her history, excluding her sin that is recorded in Scripture. What's written in Hebrews 11 shows us how God records our life's events in His Book of Remembrance. God's wrote her story in such a way as to emphasize what pleases Him the most-her faith. It seems as if He is boasting all over Heaven about Sarah, "Did you see that courage and that great faith? Here's a lady-she can't bear a child, but she knows I'm faithful!" You can see Him talking to the Scribe angel, "Make sure you put it like this..."That's my girl! She believed me-others wouldn't have, but she did!"
My response: Lord, I want you to say this about me! Could you do the same for me? Could I change my mind and know that you will heal Miles, and you would rewrite my history? Would you forgive all my previous doubts and even the times I've laughed in unbelief?
This really is my desire! I want to change my mind and never turn back to unbelief. I know that life is found in believing. I know that faith pleases God. I want it so bad that my heart aches for it. I also know that having faith/hope also makes the heart sick. Proverbs 13:12 says, "Hope deferred makes the heart sick, but a longing fulfilled is a tree of life." I have to remember that the longing fulfilled is so worth the heartache in the mean time.
Jan. Newsletter for church (the sneak preview)
Prayer and Childlike faith is an amazing thing. I want to share a couple of stories about my full of faith son named Spencer. You’ve probably seen him around church. He’s the cute kid with the most beautiful red hair you’ve ever seen. His hair is the treasure of our family. Before he came along I never thought much about red hair. When I was pregnant with Spencer I didn’t know if I was having a boy or a girl. I loved having the surprise of Randy telling me that Joey was a boy when he was born so we decided not to find out with our second child either. Well, one day when I was pregnant with him I was leaving Hobby Lobby and a cute, cute, cute little boy passed me with his mother and he had soft red hair that captivated me. I vividly remember rubbing my tummy and telling the Lord that I would like to have a red headed child. Spencer has been redheaded from the minute he was born! Our family fell in love with that hair and that boy from the minute we laid eyes on him!
Just like his red hair is special to our family and original to our family so is Spencer. He’s an all or nothing kid. Revelation 3:16 says, “So, because you are lukewarm-neither hot nor cold-I am about to spit you out of my mouth.” Spencer does not have a problem with being lukewarm. He is either hot or cold. I know this is something that the Lord has put into him for a purpose. I know Spencer is already a great man of faith at 6 years old. I’ll give you a few examples.
Last year sometime on a Sunday our family got up in the morning and went to church as always. It was a normal day. It was really windy but we didn’t think much of it. Nothing too exciting happened before church. We had a great service, and on the way home we stopped to pick up some lunch to take home. When we drove up to our house we couldn’t believe our eyes. In our front yard our tree that had been there for more years than I had lived was blown over and lying down perfectly is our yard. It broke at the ground and spread out all over our yard. It covered corner to corner. We were amazed at how it did not go into our neighbor’s yard and hit their car. It did not block our driveway. It came inches from our house but did not touch it. The tree didn’t touch anything but our yard. I was thinking about how faithful the Lord was to protect our home and our neighbor’s home from the tree that was knocked over by the wind, but Spencer thought a whole different thing. He said, “God did it!!” Spencer ran over to the tree that was laying down in our yard and was climbing all over it. He kept yelling, “God did it! God did it!” We asked him what he meant and he explained the whole thing to us. He said that on the way to church he told God that he wanted Him to knock the tree over so he could climb on it because he was too small to climb the tree when it was standing. Mark 11:23 says, “I tell you the truth, if anyone says to this mountain, “Go, throw yourself into the sea, and does not doubt in his heart, but believes that what he says will happen, it will be done for him.” I guess this scripture could have tree substituted for mountain. God heard a desire of a 5 year old boy and was pleased with his faith and request.
Here’s another thing that happened recently. We go to a ministry in Abilene called King David’s Kids about twice a month. It’s a group where parents get together that have special needs kids. It’s just nice sometimes to talk to people that really understand what you’re going through. This group is great for Randy and I because the other parents in the group love the Lord and we’re just trying to do the best we can to raise our children. Another great thing about going is that once a month we get a “Respite Night.” We get to take all five children to a local gymnastics gym for 3 hours and the kids get to play their heart out! They have a blast! Randy and I get to have dates on those days which we love. Anyway, King David’s Kid’s always provide Mr. Gatti’s pizza for the kids on the meeting nights and the respite nights. This is nice because I don’t have to worry about cooking. Well, remember what I was saying about Spencer not being lukewarm? He is not lukewarm about how he feels about Mr. Gatti’s pizza! He can’t stand it! Before every meeting and after every meeting I would hear about how much he disliked Mr. Gatti’s pizza! Now, he loves going to Mr. Gatti’s. He just doesn’t like the pizza. This was a big issue! I finally got to where I would try to remember to feed him before the meeting. Sometimes I would feed him after. Sometimes I just said, “Eat it. That’s your dinner.” I guess he had enough.
Recently at one of our meetings the director told us he had some good news and some bad news. The good news was that King David’s Kids was growing, growing and growing. The bad news was that pizza was costing them about $100 every meeting so they weren’t going to provide it anymore. They asked that we would bring the kids a sack lunch to eat.
Well, on the next respite night I was making the kids lunches when Spencer came in the kitchen. He saw me making lunches and he said, “You’re making me a lunch because you know I hate Mr. Gatti’s pizza?” He looked very pleased with me, but I had to admit to him that I wasn’t being so sweet. I explained that King David’s Kids were going to stop having pizza. That boy got a grin on his face from ear to ear and said, “You mean God answered my prayer?”
I stopped what I was doing and looked at him. I asked him if he had prayed that they would stop having Mr. Gatti’s pizza at King David’s Kids. His grin fell of his face and he looked at me a little concerned and asked, “Is that wrong?” I said, “Of course that’s not wrong. The Bible says to pray about everything.” He let out a sigh of relief and then admitted that he had prayed that they would stop having Mr. Gatti’s pizza there. Again, the Lord heard the prayer of a 6 year old and was pleased with his faith and request. Philippians 4:6 “Do not be anxious about anything, but in everything, be prayer and petition, with thanksgiving, present your requests to God.”
This little boy Spencer that can ask God to blow down trees and get rid of Mr. Gatti’s pizza is praying daily for his little brother Miles to walk. He just told me days ago that he can’t wait for Miles to walk. He said that he knows that he’s going to. As I was listening to him I wanted to be more like him so I asked him HOW he knows that Miles is going to walk. He said, “I just know.”
Matthew 18:3 says: And he said, “I tell you the truth, unless you change, and become like little children, you will never enter the kingdom of heaven.”
God, I know that faith pleases you! I know your word says that we need to become like little children to enter the kingdom of heaven. Make us more like children God!
Just like his red hair is special to our family and original to our family so is Spencer. He’s an all or nothing kid. Revelation 3:16 says, “So, because you are lukewarm-neither hot nor cold-I am about to spit you out of my mouth.” Spencer does not have a problem with being lukewarm. He is either hot or cold. I know this is something that the Lord has put into him for a purpose. I know Spencer is already a great man of faith at 6 years old. I’ll give you a few examples.
Last year sometime on a Sunday our family got up in the morning and went to church as always. It was a normal day. It was really windy but we didn’t think much of it. Nothing too exciting happened before church. We had a great service, and on the way home we stopped to pick up some lunch to take home. When we drove up to our house we couldn’t believe our eyes. In our front yard our tree that had been there for more years than I had lived was blown over and lying down perfectly is our yard. It broke at the ground and spread out all over our yard. It covered corner to corner. We were amazed at how it did not go into our neighbor’s yard and hit their car. It did not block our driveway. It came inches from our house but did not touch it. The tree didn’t touch anything but our yard. I was thinking about how faithful the Lord was to protect our home and our neighbor’s home from the tree that was knocked over by the wind, but Spencer thought a whole different thing. He said, “God did it!!” Spencer ran over to the tree that was laying down in our yard and was climbing all over it. He kept yelling, “God did it! God did it!” We asked him what he meant and he explained the whole thing to us. He said that on the way to church he told God that he wanted Him to knock the tree over so he could climb on it because he was too small to climb the tree when it was standing. Mark 11:23 says, “I tell you the truth, if anyone says to this mountain, “Go, throw yourself into the sea, and does not doubt in his heart, but believes that what he says will happen, it will be done for him.” I guess this scripture could have tree substituted for mountain. God heard a desire of a 5 year old boy and was pleased with his faith and request.
Here’s another thing that happened recently. We go to a ministry in Abilene called King David’s Kids about twice a month. It’s a group where parents get together that have special needs kids. It’s just nice sometimes to talk to people that really understand what you’re going through. This group is great for Randy and I because the other parents in the group love the Lord and we’re just trying to do the best we can to raise our children. Another great thing about going is that once a month we get a “Respite Night.” We get to take all five children to a local gymnastics gym for 3 hours and the kids get to play their heart out! They have a blast! Randy and I get to have dates on those days which we love. Anyway, King David’s Kid’s always provide Mr. Gatti’s pizza for the kids on the meeting nights and the respite nights. This is nice because I don’t have to worry about cooking. Well, remember what I was saying about Spencer not being lukewarm? He is not lukewarm about how he feels about Mr. Gatti’s pizza! He can’t stand it! Before every meeting and after every meeting I would hear about how much he disliked Mr. Gatti’s pizza! Now, he loves going to Mr. Gatti’s. He just doesn’t like the pizza. This was a big issue! I finally got to where I would try to remember to feed him before the meeting. Sometimes I would feed him after. Sometimes I just said, “Eat it. That’s your dinner.” I guess he had enough.
Recently at one of our meetings the director told us he had some good news and some bad news. The good news was that King David’s Kids was growing, growing and growing. The bad news was that pizza was costing them about $100 every meeting so they weren’t going to provide it anymore. They asked that we would bring the kids a sack lunch to eat.
Well, on the next respite night I was making the kids lunches when Spencer came in the kitchen. He saw me making lunches and he said, “You’re making me a lunch because you know I hate Mr. Gatti’s pizza?” He looked very pleased with me, but I had to admit to him that I wasn’t being so sweet. I explained that King David’s Kids were going to stop having pizza. That boy got a grin on his face from ear to ear and said, “You mean God answered my prayer?”
I stopped what I was doing and looked at him. I asked him if he had prayed that they would stop having Mr. Gatti’s pizza at King David’s Kids. His grin fell of his face and he looked at me a little concerned and asked, “Is that wrong?” I said, “Of course that’s not wrong. The Bible says to pray about everything.” He let out a sigh of relief and then admitted that he had prayed that they would stop having Mr. Gatti’s pizza there. Again, the Lord heard the prayer of a 6 year old and was pleased with his faith and request. Philippians 4:6 “Do not be anxious about anything, but in everything, be prayer and petition, with thanksgiving, present your requests to God.”
This little boy Spencer that can ask God to blow down trees and get rid of Mr. Gatti’s pizza is praying daily for his little brother Miles to walk. He just told me days ago that he can’t wait for Miles to walk. He said that he knows that he’s going to. As I was listening to him I wanted to be more like him so I asked him HOW he knows that Miles is going to walk. He said, “I just know.”
Matthew 18:3 says: And he said, “I tell you the truth, unless you change, and become like little children, you will never enter the kingdom of heaven.”
God, I know that faith pleases you! I know your word says that we need to become like little children to enter the kingdom of heaven. Make us more like children God!
Saturday, December 09, 2006
Let's celebrate Becky being Awesome!
I would like to say that these are the best Christmas photos Ever! Becky is an amazing woman with talent flowing from ever pore! I have no idea how I'm supposed to pick which one to use for our Christmas photos! I believe there are more poses on the way to me. I'll post em' when I get em'. I'm taking votes on the one that I should use.
Becky, THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!
Becky, THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!
Friday, December 08, 2006
I'm so thankful!
All the time I get asked this question, "HOW DO YOU DO IT ALL?"
Of course I love this question because it makes me feel appreciated or admired, but today I have a real answer. I HAVE A LOT OF HELP!
I usually answered with, "God gives me lots of grace." This is true. I also say, "I have no idea." Then there is, "My kids are really good. That helps a lot." That is also true, but from now on the answer will be, "I have a lot of help."
Let me say that I probably have more help from people then huge amounts of people put together. Be prepared to be blown away.
Our church is amazing! About a year and a half ago one of the Elders of our church asked me what she could do to help us out since we were adjusting to all the medical problems with Miles. She knew that he had lots of appointments with doctors and physical therapist and that many appointments were in our home. I told her that it would be so helpful to have someone help clean my floors and baseboards. I didn't have a problem keeping the house straight but all the floors were a big deal to me. Plus at the time our vacuum had broken so that was another problem. We only had 2 rooms with carpet, but still I couldn't vacuum in there. Well, she started coming over to our house personally and cleaning our floors. She also was the youth leader at the time so she took up an offering one night to buy us a vacuum! AWESOME!
Well, after awhile of that the church started paying someone to clean my house twice a week for us! TWICE A WEEK! There are seven people living in this house, five of which do not clean up after themselves and my house is usually always clean. People could stop by almost anytime to a nice clean home. That means more to me than I can explain. Of course I still straighten up the house a million times a day(or delegate it done), but everything looks clean. That is an amazing thing for such a large family!
So, we have that major thing! The next major thing is that a woman from our church, I would kiss her on the mouth if she was here right now...she does all our laundry! ALL OUR LAUNDRY! Her and her husband are amazing servants! They are behind the scene servants! On Friday I separate all of our clothes into baskets and gather hangers. Before bed I put them in our entry way and on Saturday morning her husband comes to pick them up. He has a key to our home so he just unlocks the door, puts all the baskets in his truck, and takes them home without saying a word to us. Most of the time we never see him come or go. We'll just notice the clothes are gone. Sunday evening the clothes are returned to me washed, dried, folded, hung and smelling wonderful. It's one of the most fuzzy feelings I get when I see all our laundry for the week folded in such a way that make my towels look brand new from a store. Clean and folded laundry for seven people is a truly huge task. When I see it all ready to be hung up joy wells up inside of me.
Okay, those are wonderful things. There is no denying that, but let's step away from services and let's talk about our family! We have the best of babysitting of anyone I know. Randy's Mom, Shirley is the schedule Grandma. Her and I work out a schedule and she is faithful to keep the schedule. She makes sure that every week on the same day that I get to go grocery shopping without any children. She picks up the boys from school every day. She keeps the girls and Miles on Tuesday afternoons and Friday mornings. If we have to go to Ft. Worth for Miles she keeps the girls during the day. She washes our dishes when she's at my home. She's amazing and giving. She serves our family all the time. She considers it her calling right now. By the way, Randy's Mom is 72. She makes 72 looks great! Okay, then we have my Mom, Donna. WOW! This woman can outrun me any day! I don't know how she does everything she does! This is the Grandma (Grammy) that will take ALL the kids over night so Randy and I can have a date. We can call her to watch our kids the evening of and she will drive right over. She is never out of energy. She makes the kids amazing birthday cakes. The only limit to the cakes is my own kids a imagination. One year my sweet Spencer wanted a "Mommy Cake". She made a cake that looked just like me. I was pregnant with Miles at the time so the Mommy Cake had a pregnant belly. She's fun and spur of the moment. She will take those kids places that I don't dare to go. So, we have the Grandma that will work a schedule (very valuable), we have the Grammy that will drop whatever she has going on to watch our kids (very valuable)and we also have my Grandma Jody. This is the kids Great Grandma. She started with Joey and now she's all the way to Melody, but every Thursday she comes to the house, picks up Melody, takes her to the story time at the library, checks out movies, and then goes to McDonald's for lunch. They always have a blast. It's such a treat every Thursday. It's just amazing how wonderfully blessed we are to have family that love us so much, and pour themselves out over and over for our family. Each one of them are so valuable and special. My kids have real relationships with their grandparents. I know my children treasure each one of them. I know Randy and I do as well. They make us better parents because we are able to be refreshed so often with their help.
Okay, here's another thing. Miles has such a wonderful nurse! Her name is Christy. She started working in our home in early September. She has no idea, but she has taken this gigantic load off of my shoulders. She works so hard for our family. She works from 7:45 to 12:45 in the afternoon at our house Monday through Friday. What she has done for me is given me back my Mother role for Miles. I was so busy everyday being Miles' nurse that I had no time to just kiss and hold him. There are so many things that he needs everyday that there wasn't much left of me to be his Mom. I have enjoyed him so much in the last few months because I think of him as my little boy instead of my patient. It's beautiful thing. Chirsty isn't just a nurse. She really does love Miles. (Who couldn't?) She genuinely is concerned for him, and treats him so special. She fits in our family so well. It's like having another me in the house. I'm so thankful. I've heard a lot of home health nurse nightmare stories, but mine is sweet! I trust her with my most valued earthly possession, my child.
So, clean house Check.
Awesome church body, Check.
Clean laundry, Check.
Wonderful family, Check.
Help with Miles, Check.
What else...Oh yes, My incredible husband.
I've heard people say they have the best husband in the world. I believe it's possible that they have the best possible husband for them. I know I have the best possible husband for me! Randy is an amazing man! He's the one that I wonder how he does it all! He runs his own business in such an organized way. He is a man of his word. He loves people even more than I do. He really does want to honor God in the way he lives every day life. He loves his children and does whatever it takes at the house to make things go smoothly. He wrestles with the boys, he loves on the girls, and he takes care of Miles in a way that makes me want to cry. He's so full of love and compassion for people. Most of all he loves me in a way that makes me feel confident and satisfied. I trust him and feel secure that he has my best interest at heart. He loves God and honors Him even when no one is looking! He blesses me every day.
Also, I have great girlfriends and one nice friend that is a boy, but not a boyfriend. In this adventure with Miles my girlfriends been the best friends a girl could have. Just like the Grandparents they all have special and valuable needs that they meet. Some buy me gifts when things are cruddy. Some know when I call that they will hear my cry for about a half an hour. Some pray for me all the time. Some pick up my kids from school when we've been on another Ft. Worth trip with Miles. Some send me sweet notes or email to tell me that they love me. Most of them encourage me often. I can only imagine how lonely I would feel if I didn't have them. The Lord has blessed me indeed with friends.
So, this morning is a great example of all the help I have:
I will highlight a name when someone is helping me.
The Laundry Fairy had to take a week off so that left me to do it. This was a disaster! I got so behind. After she did a weeks worth of laundry and it was delivered clean I still had not folded or put away the previous laundry so I was really behind. The laundry was a mess! Last night I came up with a plan. I asked Randy to take the boys to school, and then drop off our girls at their Grandma Shirley's house so I could get the laundry in order. He did that for me and I began to undertake mega laundry drama that had built up in our house. As I started to do that Christy arrived to start taking care of Miles. About the same time that Christy got here so did our house cleaner. All morning long we passed each other as we worked on things. It took me the same amount of time to put away all the laundry as it did for the house cleaner to do my whole house! I'm talking she cleaned everything, but that shows you how much laundry I had. As we were passing each other I kept thinking about how the Lord was taking care of me. He knows how much help I need. He told Randy and I that we were going to have five children. He knows how much work is involved with raising five children. He has been so faithful to provide me with all the help I need. As I was working in my home a wonderful friend of mine called to arrange a time today to come take our family photos for free.
The Lord is so good and faithful to bless me and take care of me. I'm so thankful to him. He amazes me with his goodness. He gives me a lot of help. That brings me back to the beginning of this whole thing.
How do I do it all? I HAVE A LOT OF HELP! I have a lot of help from Jesus Christ and his beloved people!
Of course I love this question because it makes me feel appreciated or admired, but today I have a real answer. I HAVE A LOT OF HELP!
I usually answered with, "God gives me lots of grace." This is true. I also say, "I have no idea." Then there is, "My kids are really good. That helps a lot." That is also true, but from now on the answer will be, "I have a lot of help."
Let me say that I probably have more help from people then huge amounts of people put together. Be prepared to be blown away.
Our church is amazing! About a year and a half ago one of the Elders of our church asked me what she could do to help us out since we were adjusting to all the medical problems with Miles. She knew that he had lots of appointments with doctors and physical therapist and that many appointments were in our home. I told her that it would be so helpful to have someone help clean my floors and baseboards. I didn't have a problem keeping the house straight but all the floors were a big deal to me. Plus at the time our vacuum had broken so that was another problem. We only had 2 rooms with carpet, but still I couldn't vacuum in there. Well, she started coming over to our house personally and cleaning our floors. She also was the youth leader at the time so she took up an offering one night to buy us a vacuum! AWESOME!
Well, after awhile of that the church started paying someone to clean my house twice a week for us! TWICE A WEEK! There are seven people living in this house, five of which do not clean up after themselves and my house is usually always clean. People could stop by almost anytime to a nice clean home. That means more to me than I can explain. Of course I still straighten up the house a million times a day(or delegate it done), but everything looks clean. That is an amazing thing for such a large family!
So, we have that major thing! The next major thing is that a woman from our church, I would kiss her on the mouth if she was here right now...she does all our laundry! ALL OUR LAUNDRY! Her and her husband are amazing servants! They are behind the scene servants! On Friday I separate all of our clothes into baskets and gather hangers. Before bed I put them in our entry way and on Saturday morning her husband comes to pick them up. He has a key to our home so he just unlocks the door, puts all the baskets in his truck, and takes them home without saying a word to us. Most of the time we never see him come or go. We'll just notice the clothes are gone. Sunday evening the clothes are returned to me washed, dried, folded, hung and smelling wonderful. It's one of the most fuzzy feelings I get when I see all our laundry for the week folded in such a way that make my towels look brand new from a store. Clean and folded laundry for seven people is a truly huge task. When I see it all ready to be hung up joy wells up inside of me.
Okay, those are wonderful things. There is no denying that, but let's step away from services and let's talk about our family! We have the best of babysitting of anyone I know. Randy's Mom, Shirley is the schedule Grandma. Her and I work out a schedule and she is faithful to keep the schedule. She makes sure that every week on the same day that I get to go grocery shopping without any children. She picks up the boys from school every day. She keeps the girls and Miles on Tuesday afternoons and Friday mornings. If we have to go to Ft. Worth for Miles she keeps the girls during the day. She washes our dishes when she's at my home. She's amazing and giving. She serves our family all the time. She considers it her calling right now. By the way, Randy's Mom is 72. She makes 72 looks great! Okay, then we have my Mom, Donna. WOW! This woman can outrun me any day! I don't know how she does everything she does! This is the Grandma (Grammy) that will take ALL the kids over night so Randy and I can have a date. We can call her to watch our kids the evening of and she will drive right over. She is never out of energy. She makes the kids amazing birthday cakes. The only limit to the cakes is my own kids a imagination. One year my sweet Spencer wanted a "Mommy Cake". She made a cake that looked just like me. I was pregnant with Miles at the time so the Mommy Cake had a pregnant belly. She's fun and spur of the moment. She will take those kids places that I don't dare to go. So, we have the Grandma that will work a schedule (very valuable), we have the Grammy that will drop whatever she has going on to watch our kids (very valuable)and we also have my Grandma Jody. This is the kids Great Grandma. She started with Joey and now she's all the way to Melody, but every Thursday she comes to the house, picks up Melody, takes her to the story time at the library, checks out movies, and then goes to McDonald's for lunch. They always have a blast. It's such a treat every Thursday. It's just amazing how wonderfully blessed we are to have family that love us so much, and pour themselves out over and over for our family. Each one of them are so valuable and special. My kids have real relationships with their grandparents. I know my children treasure each one of them. I know Randy and I do as well. They make us better parents because we are able to be refreshed so often with their help.
Okay, here's another thing. Miles has such a wonderful nurse! Her name is Christy. She started working in our home in early September. She has no idea, but she has taken this gigantic load off of my shoulders. She works so hard for our family. She works from 7:45 to 12:45 in the afternoon at our house Monday through Friday. What she has done for me is given me back my Mother role for Miles. I was so busy everyday being Miles' nurse that I had no time to just kiss and hold him. There are so many things that he needs everyday that there wasn't much left of me to be his Mom. I have enjoyed him so much in the last few months because I think of him as my little boy instead of my patient. It's beautiful thing. Chirsty isn't just a nurse. She really does love Miles. (Who couldn't?) She genuinely is concerned for him, and treats him so special. She fits in our family so well. It's like having another me in the house. I'm so thankful. I've heard a lot of home health nurse nightmare stories, but mine is sweet! I trust her with my most valued earthly possession, my child.
So, clean house Check.
Awesome church body, Check.
Clean laundry, Check.
Wonderful family, Check.
Help with Miles, Check.
What else...Oh yes, My incredible husband.
I've heard people say they have the best husband in the world. I believe it's possible that they have the best possible husband for them. I know I have the best possible husband for me! Randy is an amazing man! He's the one that I wonder how he does it all! He runs his own business in such an organized way. He is a man of his word. He loves people even more than I do. He really does want to honor God in the way he lives every day life. He loves his children and does whatever it takes at the house to make things go smoothly. He wrestles with the boys, he loves on the girls, and he takes care of Miles in a way that makes me want to cry. He's so full of love and compassion for people. Most of all he loves me in a way that makes me feel confident and satisfied. I trust him and feel secure that he has my best interest at heart. He loves God and honors Him even when no one is looking! He blesses me every day.
Also, I have great girlfriends and one nice friend that is a boy, but not a boyfriend. In this adventure with Miles my girlfriends been the best friends a girl could have. Just like the Grandparents they all have special and valuable needs that they meet. Some buy me gifts when things are cruddy. Some know when I call that they will hear my cry for about a half an hour. Some pray for me all the time. Some pick up my kids from school when we've been on another Ft. Worth trip with Miles. Some send me sweet notes or email to tell me that they love me. Most of them encourage me often. I can only imagine how lonely I would feel if I didn't have them. The Lord has blessed me indeed with friends.
So, this morning is a great example of all the help I have:
I will highlight a name when someone is helping me.
The Laundry Fairy had to take a week off so that left me to do it. This was a disaster! I got so behind. After she did a weeks worth of laundry and it was delivered clean I still had not folded or put away the previous laundry so I was really behind. The laundry was a mess! Last night I came up with a plan. I asked Randy to take the boys to school, and then drop off our girls at their Grandma Shirley's house so I could get the laundry in order. He did that for me and I began to undertake mega laundry drama that had built up in our house. As I started to do that Christy arrived to start taking care of Miles. About the same time that Christy got here so did our house cleaner. All morning long we passed each other as we worked on things. It took me the same amount of time to put away all the laundry as it did for the house cleaner to do my whole house! I'm talking she cleaned everything, but that shows you how much laundry I had. As we were passing each other I kept thinking about how the Lord was taking care of me. He knows how much help I need. He told Randy and I that we were going to have five children. He knows how much work is involved with raising five children. He has been so faithful to provide me with all the help I need. As I was working in my home a wonderful friend of mine called to arrange a time today to come take our family photos for free.
The Lord is so good and faithful to bless me and take care of me. I'm so thankful to him. He amazes me with his goodness. He gives me a lot of help. That brings me back to the beginning of this whole thing.
How do I do it all? I HAVE A LOT OF HELP! I have a lot of help from Jesus Christ and his beloved people!
Wednesday, December 06, 2006
Miles eating issues...
It seems like more than ever, but I need wisdom from the Lord himself about what to do with Miles. He can't seem to keep any liquid down. He's not sick. It's just that his body is rejecting liquids. His food comes back up too, but not as bad unless we give him something to drink with his food. He looks pale. We're watching him for dehydration, but he seems fine for now. I just don't know what to do. We're trying so many things right now to get liquids down him but nothing seems to be working. I think he threw up at least 20 times yesterday. He doesn't really throw up, he doesn't spit up, his body just rejects it. He will be sitting calmly and all his food and drink will flow out of his mouth in huge amounts at a time.
His physical therapist came over today and she has been like me from the very beginning about the G-Button/Feeding Tube. (See yelling and throwing things post if you don't know what I'm talking about.) She didn't want that for Miles at all, but today she told me that she has changed her mind. She now thinks he needs it. She thinks he needs it for growth, strength and for erroding esophagas reasons. She told me that she did not want the Feeding Tube to replace food. She said that we will continue to feed him foods by mouth, but the button would be great for liquids and medicines. The great thing about giving him his medicines through the button is that he will get every drop. He won't spit it out and not get it all. That would help with seizures and surely his body tone. I'm not in any way saying that I'm on board with this decision. I'm just saying that there are benifits to this thing.
My back has been so tense the last week as watch his food come out of him over and over and over. I feel like everyday I'm getting backed up into a corner closer to him getting that Feeding Tube. I'm trying so many things to try to figure out how he will keep food down, but so far I've just spent a lot of money without any good results.
I've determined in my heart that I'm going to hold off talking to the doctor until December 27th. I have an appointment with Miles' pediatrican to discuss all the things that are going on with Miles. Dr. Wiley called me out of the blue about a week ago and said that he wanted to make a time to sit down with me for an unlimited time and hear my heart about what to do with Miles. Can you believe that? Dr. Wiley is so awesome! He wants us to sit down and make a plan for what to do with Miles. With this in mind I want to just do what I can until that appointment to try to fix this rejecting food problem, but if he still is having trouble by the 27th I'm thinking that we will be discussing the Feeding Tube on the 27th.
So as I said at the beginning of this...I need the Lord's wisdom about what to do. He's the only one that I have confidence in.
I will say this though...My lovely friend Rachel sent me flowers today and it made me happy. They weren't roses. They weren't daisies. They were scrapbook flowers! How sweet is that? The Lord gave me great friends!
His physical therapist came over today and she has been like me from the very beginning about the G-Button/Feeding Tube. (See yelling and throwing things post if you don't know what I'm talking about.) She didn't want that for Miles at all, but today she told me that she has changed her mind. She now thinks he needs it. She thinks he needs it for growth, strength and for erroding esophagas reasons. She told me that she did not want the Feeding Tube to replace food. She said that we will continue to feed him foods by mouth, but the button would be great for liquids and medicines. The great thing about giving him his medicines through the button is that he will get every drop. He won't spit it out and not get it all. That would help with seizures and surely his body tone. I'm not in any way saying that I'm on board with this decision. I'm just saying that there are benifits to this thing.
My back has been so tense the last week as watch his food come out of him over and over and over. I feel like everyday I'm getting backed up into a corner closer to him getting that Feeding Tube. I'm trying so many things to try to figure out how he will keep food down, but so far I've just spent a lot of money without any good results.
I've determined in my heart that I'm going to hold off talking to the doctor until December 27th. I have an appointment with Miles' pediatrican to discuss all the things that are going on with Miles. Dr. Wiley called me out of the blue about a week ago and said that he wanted to make a time to sit down with me for an unlimited time and hear my heart about what to do with Miles. Can you believe that? Dr. Wiley is so awesome! He wants us to sit down and make a plan for what to do with Miles. With this in mind I want to just do what I can until that appointment to try to fix this rejecting food problem, but if he still is having trouble by the 27th I'm thinking that we will be discussing the Feeding Tube on the 27th.
So as I said at the beginning of this...I need the Lord's wisdom about what to do. He's the only one that I have confidence in.
I will say this though...My lovely friend Rachel sent me flowers today and it made me happy. They weren't roses. They weren't daisies. They were scrapbook flowers! How sweet is that? The Lord gave me great friends!
Our WOW Christmas Party.
Here are some pictures of our WOW (Women of Worth) party. I was so fun! It was not THE PARTY of the year but it was great. I'm hoping to write about THE PARTY of the year but I wanted to get these great pictures on here right now. Rachel and I decorated this table for the party. Becky, the Women's Pastor asked for teams to get together and decorate the tables for a $50 prize. I think there were about 8 tables and seven teams trying to win the prize.
At first Rachel and I didn't think we had it in us to compete. We would have had to buy a lot of fancy dished that we didn't have so we didn't think we were going to do it. THEN, I had a masterful plan! I was at her house and I said, "Hey Rachel, why don't we do a scrapbook table!" Then our ideas flowed like milk and honey! We decided to make everything out of paper! We had idea after idea on things we could do. It was on after that! The next couple of days was a Whirlwind of Instant Messaging Ideas! We went shopping and spent a whopping $25 or so. We planned to work at my house on Saturday. Before Rachel got to my house at 10:00 I told Randy not to worry because we would be done by Noon. YIKES! I was wrong! We were working at my table until 6:00 in the evening! Then we had to go to Hobby Lobby for one last touch which took us awhile because we were shopping in Our store! We had so much fun! So far that was the funnest thing I've done all season. There was just something about sitting down at my huge table for hours and hours making stuff that just blessed my socks off!
Here's the deal. We made every part of this table. We didn't blow our own glass, but we did everything else! I mean...we made LAMPSHADES for our glasses. What else can I say?
Anyway, while making the stuff we had decided that we would surley win! I mean come on...we were working our scissor cutting hands to the bone! Poor Rachel had Modge Podge seeping into her blood stream by the end of the eighth plate! Well, on the way to the party we had lost a little confidence and thought that our table might end up looking cheesey and too homemade, but we had a little fight in us left. BUT, when we got there and everyone started doing their table our high hopes were shattered. I was amazed at everyone's creativity! I was in awe really! I loved how each table looked just like their personality. I had given up on winning and decided just to enjoy our Brandi and Rachel table. I thought everything looked so cute. The table was us and I loved it. I figured Monica and Francesca were going to win (maybe should have) and I was happy with the whole thing. Well, when the winner was announced, AND IT WAS US it was so exciting! I was actually surprised! It was a good surprise! I felt like our hard work had paid off plus we had so much fun working on it. I decided to keep my small WOW plate in my Christmas decorations to remind me of our sweet victory! The whole time Rachel and I thought that we were going to share the $50 prize. We were happy with that. We didn't know that we were each going to win $50!! That was a really sweet surprise! I still haven't cashed my check. I want to buy something really special with it! Anyway, it was so fun and rewarding to win after all our hard work. I just had to share the pictures.
Our Table
At first Rachel and I didn't think we had it in us to compete. We would have had to buy a lot of fancy dished that we didn't have so we didn't think we were going to do it. THEN, I had a masterful plan! I was at her house and I said, "Hey Rachel, why don't we do a scrapbook table!" Then our ideas flowed like milk and honey! We decided to make everything out of paper! We had idea after idea on things we could do. It was on after that! The next couple of days was a Whirlwind of Instant Messaging Ideas! We went shopping and spent a whopping $25 or so. We planned to work at my house on Saturday. Before Rachel got to my house at 10:00 I told Randy not to worry because we would be done by Noon. YIKES! I was wrong! We were working at my table until 6:00 in the evening! Then we had to go to Hobby Lobby for one last touch which took us awhile because we were shopping in Our store! We had so much fun! So far that was the funnest thing I've done all season. There was just something about sitting down at my huge table for hours and hours making stuff that just blessed my socks off!
Here's the deal. We made every part of this table. We didn't blow our own glass, but we did everything else! I mean...we made LAMPSHADES for our glasses. What else can I say?
Anyway, while making the stuff we had decided that we would surley win! I mean come on...we were working our scissor cutting hands to the bone! Poor Rachel had Modge Podge seeping into her blood stream by the end of the eighth plate! Well, on the way to the party we had lost a little confidence and thought that our table might end up looking cheesey and too homemade, but we had a little fight in us left. BUT, when we got there and everyone started doing their table our high hopes were shattered. I was amazed at everyone's creativity! I was in awe really! I loved how each table looked just like their personality. I had given up on winning and decided just to enjoy our Brandi and Rachel table. I thought everything looked so cute. The table was us and I loved it. I figured Monica and Francesca were going to win (maybe should have) and I was happy with the whole thing. Well, when the winner was announced, AND IT WAS US it was so exciting! I was actually surprised! It was a good surprise! I felt like our hard work had paid off plus we had so much fun working on it. I decided to keep my small WOW plate in my Christmas decorations to remind me of our sweet victory! The whole time Rachel and I thought that we were going to share the $50 prize. We were happy with that. We didn't know that we were each going to win $50!! That was a really sweet surprise! I still haven't cashed my check. I want to buy something really special with it! Anyway, it was so fun and rewarding to win after all our hard work. I just had to share the pictures.
Our Table
Thanks Erica
Doesn't it just make since that I would be Superman? It just makes since besides the whole man thing. I am mild mannered, good, strong, and I love to help people. It said I was 100% Superman. I even like that part! I like being 100% of something even as trivial as this. Good one Erica. That was fun.
Your results:
You are Superman
Click here to take the Superhero Personality Test
Your results:
You are Superman
| You are mild-mannered, good, strong and you love to help others.  |
Click here to take the Superhero Personality Test
Sunday, December 03, 2006
Child like Faith
I was in my room wrapping up Christmas presents when Spencer came in and said, "All I want for Christmas is for Miles to be healed. I can't wait for him to walk. I know he's going to walk someday."
Thursday, November 30, 2006
It's snowing!
I don't care if every one of you post about the weather. I'm going to also. I love love love it! This morning I got to snuggle in the bed with my boys since they didn't have school. I got up and made waffles and hot chocolate. I let them play in the snow. They got on the trampoline and I took pictures of them falling on their bottoms. I snuggled with Miles on the couch and he was so loud with excitement. He loved being under the blanket with me while the kids were running around him. He was as happy as could be. I went to the bathroom for a minute and when I came out my brother Charlie and Randy's other worker was in my house emptying my coffee pot. Randy is working on a house just down the street and his guys were freezing so they came to the house for coffee. That was fun. I made another pot and reheated some waffles for them then they left. Then I made a yummy warm lunch for Randy. After lunch I ran to the movie store while Randy rested on the couch and I rented 3 Christmas movies. When I got home I laid the kids down for a nap, and after they wake up we're going to have a Christmas movie marathon. Fun! I'm glad that Texas shuts down with it snows. It's so rare that it should shut down. Hey, I got a personal call from the boys school telling us that the school was not open today. That was neat. I did ask Spencer's teacher if she was up for babysitting but she said no. I told her she could pick 1 to 5 children. I had plans today to find myself a fancy dress for Elliott's party tomorrow. Hopefully tomorrow will be better and I will be able to find one then. I do know how I'm going to do my hair. I practised yesterday and I like it. Randy thought it was a little out there, but that's okay.
So, today the snow is wonderful. It's great, but please keep in mind Lord that I need some time to look for a fancy dress. I know I could have already looked for one, but that's not how I roll.
So, today the snow is wonderful. It's great, but please keep in mind Lord that I need some time to look for a fancy dress. I know I could have already looked for one, but that's not how I roll.
Tuesday, November 28, 2006
He's So Cute!
Meet Mr. Pumpkin Buns. He's a great friend of ours. He lives on South 11th. Every school morning for the last 2 months we have driven by Mr. Pumpkin Buns house and waved, laughed and clapped about him. The day after we took these pictures we drove by his house and the huge wind storm we had knocked his buns right out of his pants! We laughed so hard! Well, this week his buns were back in and we've been rejoicing! It's good to have him back!
Test Results
The test went great yesterday. You're right Jennifer. I get to do lots of cool things. This was one of the neater ones. I took Miles to the test which was in the Radiology department. They stuffed me into this little space with huge machines on both sides of me. They squished the machines on me so they could get as close to Miles as possible. I had a heavy X-Ray vest on my body, and a X-ray throat choker and I was holding Miles. I could not submit to the claustrophobia that was trying to attack me. I just stayed focus.
There was a man in front of Miles and it was his job to spoon food Miles and to give him a bottle. This man was so kind and gentle. He had a quiet and nice spirit and it put me at ease. They had a tray of food sent from the cafeteria for Miles. It had cottage cheese, pear sauce, chocolate pudding, crumbled hamburger meat, mashed potatoes and a hunk of chicken. I told the guy to stick to the potatoes. He put the Barium in the food and the bottle so the food could be seen on the X-ray video. Quickly the doctor said that his swallow was great and that was the end of the test.
After I got out of the hole they put me in I asked the guy to show me the video. He was so nice. He showed me the video and explained how everything works when you swallow. It was so awesome! I could see Miles whole skeleton from the top of the head to his shoulder in video form. He looked so adorable. I could see his cute little nose and his teeth. It was amazing to see the food work around in his jaw and then move down his throat. It had a cool motion to it. That guy kept rewinding and the playing it again for me. I guess he was amused at my amazement. I was very pleased with his explanations.
I'm so glad the test went well. The only problem is that we still don't know what is causing Miles to reject his food like he does. The technician said the problem is probably lower down in the esophagus or the lower stomach. But, like Randy said, "At least we know there is one thing not wrong with Miles. He can swallow."
It was nice to leave an appointment where everything was normal.
Today a dietitian came over to talk about Miles weight and food with me. He weighs 19 pounds and he is 29 and a half inches long. He's under the 5th percentile for his weight and height. His weight wasn't even on the chart for a 2 year old. He's a small little boy. That shocks me. I thought he was super tall, but I guess because he's so skinny he looks taller than he is. The dietitian said we need to have the goal of him gaining 5 pounds and she didn't give me help on how to get there. I looked back at his baby book and he has been 19 pounds since he was 9 months old. He's just grown taller. So, pray that the Lord will give him a healthy 5 more pounds. I asked Miles if he would take donations, but he didn't answer me.
There was a man in front of Miles and it was his job to spoon food Miles and to give him a bottle. This man was so kind and gentle. He had a quiet and nice spirit and it put me at ease. They had a tray of food sent from the cafeteria for Miles. It had cottage cheese, pear sauce, chocolate pudding, crumbled hamburger meat, mashed potatoes and a hunk of chicken. I told the guy to stick to the potatoes. He put the Barium in the food and the bottle so the food could be seen on the X-ray video. Quickly the doctor said that his swallow was great and that was the end of the test.
After I got out of the hole they put me in I asked the guy to show me the video. He was so nice. He showed me the video and explained how everything works when you swallow. It was so awesome! I could see Miles whole skeleton from the top of the head to his shoulder in video form. He looked so adorable. I could see his cute little nose and his teeth. It was amazing to see the food work around in his jaw and then move down his throat. It had a cool motion to it. That guy kept rewinding and the playing it again for me. I guess he was amused at my amazement. I was very pleased with his explanations.
I'm so glad the test went well. The only problem is that we still don't know what is causing Miles to reject his food like he does. The technician said the problem is probably lower down in the esophagus or the lower stomach. But, like Randy said, "At least we know there is one thing not wrong with Miles. He can swallow."
It was nice to leave an appointment where everything was normal.
Today a dietitian came over to talk about Miles weight and food with me. He weighs 19 pounds and he is 29 and a half inches long. He's under the 5th percentile for his weight and height. His weight wasn't even on the chart for a 2 year old. He's a small little boy. That shocks me. I thought he was super tall, but I guess because he's so skinny he looks taller than he is. The dietitian said we need to have the goal of him gaining 5 pounds and she didn't give me help on how to get there. I looked back at his baby book and he has been 19 pounds since he was 9 months old. He's just grown taller. So, pray that the Lord will give him a healthy 5 more pounds. I asked Miles if he would take donations, but he didn't answer me.
Monday, November 27, 2006
Swallow Test Today.
Okay, I'm about to take Miles to the swallow test that I wrote about 2 weeks ago. I have to take him in his wheelchair. They will give him Barium (sp?) to drink and then feed him a bottle and spoon feed him while watching a computer screen to see where the food goes when he swallows. They will be checking to see if he is aspirating and I think some other stuff. I think I'm going to be able to watch the screen and see the food go down his throat. How wild it that.
Sunday, November 26, 2006
I did it.
Well, I had a good cry, but I'm feeling good.
Knowing that I was going to take Miles into church today in his wheelchair was racing in my mind before bed, while getting my kids ready for church, while doing my makeup, while cleaning out the back of the Suburban to see if the wheelchair fit, and of course on my way to church. On the way there I asked Randy what his thoughts were if any at all about the whole thing. He told me that he hadn't thought about it too much, but when I started to tell him the things that were going on in my head he agreed that he had thought of most of those things.
I think one of the main issues that I was having was that I knew that it might hurt my friends to see Miles in his wheelchair. This really did bother me and bless me. I knew that if the tables were turned and it was a friend of mine that brought their child to church for the first time in a wheelchair that I would be sad for her. My friends have fought, prayed, believed and supported me from day one so I kept thinking about how they would feel today. I know that if I had to watch my dear friend be brave and face the crowd today I would have hurt for her, I wouldn't have known what to say, I would have talked about her when I got in the car with Randy, I would have wanted to give her a hug or wanted to avoid her completely.
Another thing I thought about before I got to church was the reason I was so upset about the whole wheelchair thing. Why was it so upsetting? What does it mean? To me, it felt like I was admitting defeat. Permanent Defeat...No. Just defeat for now. Who likes to admit defeat?
Then of course the "Always a conflict issue." Is this thing that I've sold my life to true? How can it be true if I'm about to take my handicap child into church? In my Bible it says that my God is a healer, but my son cannot do anything on his own. I've now got a wheelchair to prove that he should be able to walk and he can't. Do I look like a contradiction? What in the world is the Lord doing? Can he give me just a taste of the future so I can go into church with my head held high knowing that God is going to rescue me?
On the way there I was doing okay. When we pulled up I couldn't seem to catch my breath. I asked Randy if we could just wait until next week. I didn't want to do it. Diane pulled up beside us and I had no desire to whip out the wheelchair. Randy said we were going to do it. He prayed for me and then went to get it out of the back. As he was getting it out of the back Joey asked me for a piece of gum. (Read Previous Gum Post) I said, "Gum? Yes Gum. I can give you gum. You can have gum. Here help yourself. Have the whole pack. Share with your brother." Joey didn't understand why I was being so generous and he didn't question. He just enjoyed splitting his plunder with Spencer.
I actually felt weak in the knees. I haven't felt that way in...I can't remember. Oh yeah, since my very first BFW. I guess it's that exposed feeling all over again. Well, I made it to the Ushers and got my bulletin. I read it about 17 times before I got to my seat. I can't tell you one thing it said, but I kept looking at it to avoid eye contact.
We got many comments like, "He's so cute." He really is cute in that thing. He was smiling and happy. We got a, "He's mobile now!" I got a couple of hugs and a few, "Cool chair."
We got to our seats with Miles brakes parked and then worship started. The song starts:
Through you the blind will see.
Through you the mute will sing.
Through you the dead will rise.
Through you our hearts will praise.
Through you the darkness flees.
Through you my heart sings I am free.
I am free.
I am free to run.
I am free to dance.
I am free to live for you.
I am free.
I am free.
I said, "Come on Billy you're killing me." Then I cried for the next 45 minutes. All I could do was stand there with perfect posture and weep throughout worship. I silently sang those words to the Lord and told him how broken I felt. One of the songs was I'm coming back to the heart of worship. In the song is says Ill bring you more than a song for a song in itself is not what you have required. You search much deeper within through the way things appear. You're looking into my heart. Today I brought the Lord something more than a song. I was feeling pretty beat up about the way that I was hurting until this song came on. I felt like God was accepting my worship today. It cost me something. It hurt.
So many people came up to me today and just hugged me and encouraged me. It meant a lot. Of course I was over exposed a bit but I didn't care. You know how when you're in the delivery room and at the end of the whole thing you don't care who is in the room? You just are ready to have your baby and your normal modest self just goes out the window? That's how I felt today. I was beyond trying to conceal or act fine. I was hurting and it felt good that I was being loved on. It feels good to not feel invisible. I love that our church body encourages being open. If I had to have it together every Sunday I would not see the point in going. I didn't feel free to dance today but I did feel free to cry. By the way I don't know who brought tissues over to us right away but thanks. I used every square inch of those tissues and they were the good kind that left my face feel oily.
After a couple of songs I thought about leaving. I thought that if I could just get out of there I could try again the next week. I quickly knew this was a bad idea. If I left then next week would be even worse. I can only imagine the torment that I would have during the week. I'm glad I decided to stay.
By the time worship was over I was feeling better. I was ready to listen to the sermon and receive. I did great through the whole thing. Right before communion Kathy came over to Randy and I and said "The Words". These are the words that you should say if people are going through things that are hard. Here they are...I just want you to know that even if you are too tired to pray or to be full of faith that we are still doing it for you. We are so proud of you. We are so proud of you for hanging in there. We are still here for you. But most of all I'm so sorry. I'm so sorry that you're still having to go through this and that it's still hard. We love you. Those are the words that are so comforting. Those are the things that make me feel loved and encouraged. When she was saying these things she had her hands on us and she was looking at us in the eyes. She was serious and compassionate. After she said those wonderful things she kissed our cheeks. If you could bottle that up and sell it there would be no end to your profits. It's love and understanding.
So of course I lost all composer after that. I had to get up and take communion and we had to wheel Miles up there with us. That was hard. My hands were shaking as I was taking the blood and body of Christ. In my mouth it tasted bitter sweet. That's what today was. It was bitter sweet.
After communion I marched behind Randy and Miles with my head held high and wished I was invisible. I wanted to magically appear in my car and be on my way home. That didn't happen. There was still kids to gather and small talk to be had. When I went to pick up Joey from Children's Church I asked Joey if he wanted to push Miles around. We're trying to make it like a treat to get to push Miles in the wheelchair. I told Randy the other day that we have to allow the kids to play with Miles in that chair. My theory is that if we act like the chair is sterile that the kids will act the same way. If we act like it's fun to push Miles in the wheelchair that it will be fun. So far this has been true. You should have seen Joey push Miles across the gym floor. It was a little scary. I told Randy that Miles is two years old, and 2 year olds get hurt all the time. If Miles gets hurt sometimes when the kids are pushing him then it's just normal. Of course I don't want him to get hurt, but I also want his brothers and sisters to be able to play with him and not feel nervous that they will break him.
One person asked me how I was doing today and I told them that it was been a rough day. When I did make it to the car I felt good about how the day had gone. I felt like I made a big step today. Miles loves the chair and it's great for his body. It's really like he's having physical therapy when he's in the chair. It was made just for him. He's so alert and happy in it that I need to get over my issues so he can enjoy himself more. I feel like today was a success.
In the car you would think that I was totally relieved that I had completed my day, but that wasn't true. I had to go from that whole deal to my next deal. My brother and his wife and my nephew Connor was in town and I had to make them lunch right after church. My nephew is actually 2 weeks younger than Miles. I wanted to crawl in a hole and reset, but that wasn't an option. I had to keep going. Before I could cook I had to stop off the HEB for a few items. Randy and the kids stayed in the car while I went inside. When I walked in there it felt so surreal. The tortilla maker lady smiled big at me like there was not a care in the world. People were passing by me with their lists and carts. I just felt like yelling at the top of my lungs, "HOW CAN ALL OF YOUR LIVES BE SO NORMAL? HOW CAN EVERYTHING AROUND ME BE SO CALM WHEN I FEEL SO EMOTIONAL? DON'T ANY OF YOU KNOW THAT I TOOK MY SON TO CHURCH IN A WHEELCHAIR FOR THE FIRST TIME TODAY? WHY HASN'T THE WORLD STOPPED?" Of course I'm glad I didn't didn't do that. I did have an outburst at Thanksgiving dinner that I wish I could take back. (Maybe I will get to that on another post. Remind me if I forget.)
That's how I felt today. My world was upside down and everyone else seemed to be doing normal things. It's a strange feeling. I had to go home to a house of 12 and make homemade tomato soup and 24 grilled cheese sandwiches and be hostess. I had to play games and be charming. I had to suppress all feelings of broken heartedness and just continue. Continue being a Mommy to five children, listening to church stories, cook lunch, display my food pretty for when my Mom came over, prepare for a good time all the while silently mourning a loss I felt today.
But I made it. I did it. Next time will be easier. I can only look forward to the day when I get to see Miles push his wheelchair around like a toy. We went to McDonald's tonight and the lady that handed out our food had a big Tattoo on her neck that said HOPE. Again, hope is restored in the strangest of ways.
Knowing that I was going to take Miles into church today in his wheelchair was racing in my mind before bed, while getting my kids ready for church, while doing my makeup, while cleaning out the back of the Suburban to see if the wheelchair fit, and of course on my way to church. On the way there I asked Randy what his thoughts were if any at all about the whole thing. He told me that he hadn't thought about it too much, but when I started to tell him the things that were going on in my head he agreed that he had thought of most of those things.
I think one of the main issues that I was having was that I knew that it might hurt my friends to see Miles in his wheelchair. This really did bother me and bless me. I knew that if the tables were turned and it was a friend of mine that brought their child to church for the first time in a wheelchair that I would be sad for her. My friends have fought, prayed, believed and supported me from day one so I kept thinking about how they would feel today. I know that if I had to watch my dear friend be brave and face the crowd today I would have hurt for her, I wouldn't have known what to say, I would have talked about her when I got in the car with Randy, I would have wanted to give her a hug or wanted to avoid her completely.
Another thing I thought about before I got to church was the reason I was so upset about the whole wheelchair thing. Why was it so upsetting? What does it mean? To me, it felt like I was admitting defeat. Permanent Defeat...No. Just defeat for now. Who likes to admit defeat?
Then of course the "Always a conflict issue." Is this thing that I've sold my life to true? How can it be true if I'm about to take my handicap child into church? In my Bible it says that my God is a healer, but my son cannot do anything on his own. I've now got a wheelchair to prove that he should be able to walk and he can't. Do I look like a contradiction? What in the world is the Lord doing? Can he give me just a taste of the future so I can go into church with my head held high knowing that God is going to rescue me?
On the way there I was doing okay. When we pulled up I couldn't seem to catch my breath. I asked Randy if we could just wait until next week. I didn't want to do it. Diane pulled up beside us and I had no desire to whip out the wheelchair. Randy said we were going to do it. He prayed for me and then went to get it out of the back. As he was getting it out of the back Joey asked me for a piece of gum. (Read Previous Gum Post) I said, "Gum? Yes Gum. I can give you gum. You can have gum. Here help yourself. Have the whole pack. Share with your brother." Joey didn't understand why I was being so generous and he didn't question. He just enjoyed splitting his plunder with Spencer.
I actually felt weak in the knees. I haven't felt that way in...I can't remember. Oh yeah, since my very first BFW. I guess it's that exposed feeling all over again. Well, I made it to the Ushers and got my bulletin. I read it about 17 times before I got to my seat. I can't tell you one thing it said, but I kept looking at it to avoid eye contact.
We got many comments like, "He's so cute." He really is cute in that thing. He was smiling and happy. We got a, "He's mobile now!" I got a couple of hugs and a few, "Cool chair."
We got to our seats with Miles brakes parked and then worship started. The song starts:
Through you the blind will see.
Through you the mute will sing.
Through you the dead will rise.
Through you our hearts will praise.
Through you the darkness flees.
Through you my heart sings I am free.
I am free.
I am free to run.
I am free to dance.
I am free to live for you.
I am free.
I am free.
I said, "Come on Billy you're killing me." Then I cried for the next 45 minutes. All I could do was stand there with perfect posture and weep throughout worship. I silently sang those words to the Lord and told him how broken I felt. One of the songs was I'm coming back to the heart of worship. In the song is says Ill bring you more than a song for a song in itself is not what you have required. You search much deeper within through the way things appear. You're looking into my heart. Today I brought the Lord something more than a song. I was feeling pretty beat up about the way that I was hurting until this song came on. I felt like God was accepting my worship today. It cost me something. It hurt.
So many people came up to me today and just hugged me and encouraged me. It meant a lot. Of course I was over exposed a bit but I didn't care. You know how when you're in the delivery room and at the end of the whole thing you don't care who is in the room? You just are ready to have your baby and your normal modest self just goes out the window? That's how I felt today. I was beyond trying to conceal or act fine. I was hurting and it felt good that I was being loved on. It feels good to not feel invisible. I love that our church body encourages being open. If I had to have it together every Sunday I would not see the point in going. I didn't feel free to dance today but I did feel free to cry. By the way I don't know who brought tissues over to us right away but thanks. I used every square inch of those tissues and they were the good kind that left my face feel oily.
After a couple of songs I thought about leaving. I thought that if I could just get out of there I could try again the next week. I quickly knew this was a bad idea. If I left then next week would be even worse. I can only imagine the torment that I would have during the week. I'm glad I decided to stay.
By the time worship was over I was feeling better. I was ready to listen to the sermon and receive. I did great through the whole thing. Right before communion Kathy came over to Randy and I and said "The Words". These are the words that you should say if people are going through things that are hard. Here they are...I just want you to know that even if you are too tired to pray or to be full of faith that we are still doing it for you. We are so proud of you. We are so proud of you for hanging in there. We are still here for you. But most of all I'm so sorry. I'm so sorry that you're still having to go through this and that it's still hard. We love you. Those are the words that are so comforting. Those are the things that make me feel loved and encouraged. When she was saying these things she had her hands on us and she was looking at us in the eyes. She was serious and compassionate. After she said those wonderful things she kissed our cheeks. If you could bottle that up and sell it there would be no end to your profits. It's love and understanding.
So of course I lost all composer after that. I had to get up and take communion and we had to wheel Miles up there with us. That was hard. My hands were shaking as I was taking the blood and body of Christ. In my mouth it tasted bitter sweet. That's what today was. It was bitter sweet.
After communion I marched behind Randy and Miles with my head held high and wished I was invisible. I wanted to magically appear in my car and be on my way home. That didn't happen. There was still kids to gather and small talk to be had. When I went to pick up Joey from Children's Church I asked Joey if he wanted to push Miles around. We're trying to make it like a treat to get to push Miles in the wheelchair. I told Randy the other day that we have to allow the kids to play with Miles in that chair. My theory is that if we act like the chair is sterile that the kids will act the same way. If we act like it's fun to push Miles in the wheelchair that it will be fun. So far this has been true. You should have seen Joey push Miles across the gym floor. It was a little scary. I told Randy that Miles is two years old, and 2 year olds get hurt all the time. If Miles gets hurt sometimes when the kids are pushing him then it's just normal. Of course I don't want him to get hurt, but I also want his brothers and sisters to be able to play with him and not feel nervous that they will break him.
One person asked me how I was doing today and I told them that it was been a rough day. When I did make it to the car I felt good about how the day had gone. I felt like I made a big step today. Miles loves the chair and it's great for his body. It's really like he's having physical therapy when he's in the chair. It was made just for him. He's so alert and happy in it that I need to get over my issues so he can enjoy himself more. I feel like today was a success.
In the car you would think that I was totally relieved that I had completed my day, but that wasn't true. I had to go from that whole deal to my next deal. My brother and his wife and my nephew Connor was in town and I had to make them lunch right after church. My nephew is actually 2 weeks younger than Miles. I wanted to crawl in a hole and reset, but that wasn't an option. I had to keep going. Before I could cook I had to stop off the HEB for a few items. Randy and the kids stayed in the car while I went inside. When I walked in there it felt so surreal. The tortilla maker lady smiled big at me like there was not a care in the world. People were passing by me with their lists and carts. I just felt like yelling at the top of my lungs, "HOW CAN ALL OF YOUR LIVES BE SO NORMAL? HOW CAN EVERYTHING AROUND ME BE SO CALM WHEN I FEEL SO EMOTIONAL? DON'T ANY OF YOU KNOW THAT I TOOK MY SON TO CHURCH IN A WHEELCHAIR FOR THE FIRST TIME TODAY? WHY HASN'T THE WORLD STOPPED?" Of course I'm glad I didn't didn't do that. I did have an outburst at Thanksgiving dinner that I wish I could take back. (Maybe I will get to that on another post. Remind me if I forget.)
That's how I felt today. My world was upside down and everyone else seemed to be doing normal things. It's a strange feeling. I had to go home to a house of 12 and make homemade tomato soup and 24 grilled cheese sandwiches and be hostess. I had to play games and be charming. I had to suppress all feelings of broken heartedness and just continue. Continue being a Mommy to five children, listening to church stories, cook lunch, display my food pretty for when my Mom came over, prepare for a good time all the while silently mourning a loss I felt today.
But I made it. I did it. Next time will be easier. I can only look forward to the day when I get to see Miles push his wheelchair around like a toy. We went to McDonald's tonight and the lady that handed out our food had a big Tattoo on her neck that said HOPE. Again, hope is restored in the strangest of ways.
Saturday, November 25, 2006
Breathe in...Exhale
Okay, tomorrow is kind of a big day. We're planning on taking Miles to church in his wheelchair for the first time. I've taken him on a test run around our neighborhood and that went well. We even went shopping at a store by myself. It wasn't too bad at all. He really seems to like the chair which helps a ton. I think I'm ready to start using the chair. I just don't want to have an emotional breakdown about the whole thing. I've been doing pretty well so I don't want to ruin it. Please pray for our family that Miles will be able to have a comfortable place to sit without his family being an emotional wreck about it.
He really is pretty cute in his chair. I will have to get a picture of him in it on here for you to see him.
This is a huge step for us.
He really is pretty cute in his chair. I will have to get a picture of him in it on here for you to see him.
This is a huge step for us.
Monday, November 20, 2006
Where for art thou Repair Man?
Day Four for the Family of Seven to be without a refrigerator! Yikes!
Well, the repair man did not show up again today. When Randy got home I asked him what was up and he went in Warrior mode. He tracked down the said repair man to a nearby alley and he went after the hunt.
He came to tell me that he would be right back. He did not ask if it was okay. He did not consider the plans we have made for dinner. He meant business and I said not a word.
Jocie came in and asked where Poppa went and I told her that her Poppa went to track down the Refrigerator Man in the alley to which she said, "Hally Mat-a-Roll!" I couldn't agree more!
This will be our first time to ever host Thanksgiving dinner in our home. Almost all of Randy's family will be here for Thanksgiving and as of right now we do not have a refrigerator. The compressor on ours went out on Friday. Thanksgiving to Randy's family is Big. The idea of not having a refrigerator merely days before the precious event spins Randy's nerves into knots. I really should be interceding for the Repair Man instead of typing this post.
********************************************************************************
Yikes...the scent of the Repair Man went cold. Randy just returned from the hunt without any meat. He went directly to the bath to clean up his wounds. I guess dinner is still going to have to wait.
Well, the repair man did not show up again today. When Randy got home I asked him what was up and he went in Warrior mode. He tracked down the said repair man to a nearby alley and he went after the hunt.
He came to tell me that he would be right back. He did not ask if it was okay. He did not consider the plans we have made for dinner. He meant business and I said not a word.
Jocie came in and asked where Poppa went and I told her that her Poppa went to track down the Refrigerator Man in the alley to which she said, "Hally Mat-a-Roll!" I couldn't agree more!
This will be our first time to ever host Thanksgiving dinner in our home. Almost all of Randy's family will be here for Thanksgiving and as of right now we do not have a refrigerator. The compressor on ours went out on Friday. Thanksgiving to Randy's family is Big. The idea of not having a refrigerator merely days before the precious event spins Randy's nerves into knots. I really should be interceding for the Repair Man instead of typing this post.
********************************************************************************
Yikes...the scent of the Repair Man went cold. Randy just returned from the hunt without any meat. He went directly to the bath to clean up his wounds. I guess dinner is still going to have to wait.
Ho Hum...
Well, after that last gloomy post I've wanted to write something enlightening, witty, hilarious or controversial, but I got nothin'.
I didn't see Jack Black dressed like a King.
I didn't find a missing letter that somehow made me feel God is in control.
I didn't learn how to play Sudko and become easily obsessed with playing the game.
Nothing. I got nothing.
Oh creative stick come back to me.
I did have a great weekend away with my husband, but I can't write anything about that. That is Top Secret, Private, Report Blog for Questionable Material type stuff.
I didn't see Jack Black dressed like a King.
I didn't find a missing letter that somehow made me feel God is in control.
I didn't learn how to play Sudko and become easily obsessed with playing the game.
Nothing. I got nothing.
Oh creative stick come back to me.
I did have a great weekend away with my husband, but I can't write anything about that. That is Top Secret, Private, Report Blog for Questionable Material type stuff.
Thursday, November 16, 2006
Just picture me screaming and throwing things.
Where do I begin this post with the new information I got today that makes my head swim with scenarios, fears, hopelessness, and frustration?
The nurse Christy took Miles to the doctor today for immunization shots that he was behind on because his legs were casted so long. Plus, we had several different issues that we needed to get information about from the doctor about Miles. Christy had a list of things to discuss.
- The seizure medication has been doubled and Miles is still have seizures.
- He's been spitting up his food again, and throwing up at night.
- The blood circulation to his feet are bad causing them to be purple a lot of times.
- Immunization shots
- His weight.
Well, Dr. Wiley thought the throwing up at night was due to the seizures he's having at night. (we already thought that) so he upped his medication some more.
The blood circulation thing is the same answer as always...There's nothing we can do but rub Miles' feet all the time to keep the blood flowing.
Shots taken care of. He didn't like them.
He only weighs 19 pounds. He's so very long. This is a problem.
We didn't think he was sick at all but he has double ear infections. He has not had one day of fever. He does not have any runny nose or anything. I can't believe he's sick! There were no signs!
The throwing up the food again is why I'm disturbed. Dr. Wiley has ordered a swallow test on Miles to see where his food is going when he swallows. The test is not a big deal. It's an easy thing. It's done in Abilene. The thing that's bothering me is that Christy came home talking about how Dr. Wiley thinks a G-Button would really benefit Miles. If he had a button in his stomach it would help with his reflux, help him to gain weight, help with the throwing up and blah blah blah. You can read more about the button at http://www.pediatricsurgeon.com/care/PDF/RMPS_gbutton.pdf
Here's the deal. One of the only things that Miles does normal is eat food. I love it that I can feed him. He enjoys it. If he gets this tube then he will have his liquid food shot right to his stomach where he won't have to eat. His medications will be given to him through his tube. He will have to be hooked up to tubes to eat. He could be hooked up to a pump at night to eat. It's just so dang medical. It just seems like Life Support to me, but as Randy pointed out when I talked to him..so is feeding him already. He can't feed himself. Hey, have any of you ever realized that Miles has never fed himself one thing? That last sentence by itself takes my breath away and makes me feel trapped.
Honestly, from the beginning there were two things that I put my foot down about. 1. I did not want Miles to have seizures. 2. I did not want Miles to have a G-button. As you know #1 came to pass already a month ago. It was out of my control.
Here's what I'm feeling:
- Part of me wants to be a Warrior Woman about this and with everything in me fight from him getting this procedure done. I want to say if anyone tries to talk to me about Miles getting that button that I will punch them in the face. I want to say that I will stand my ground and demand that the Lord fix his problems. I just want to stand firm.
- Another part of me wants to just say "Whatever" in a weak way and just go with the flow. I can't seem to control anything that happens with Miles anyway. I might as well just give up having anything that I limit with him. It doesn't help anything. I just feel like laying down on the floor and letting the cards fall where they may.
- Then another part of me thinks that I all I can do is love Miles, take care of him in whatever way that means best for him. If it means that I need to allow him to have that button then do it. I can have a cheerful attitude and just continue to hope for the best for him.
All three of those things could be agreed on by other people and all three of those things could be frowned on by other people. There's no winning. All three are wrong because they are so far from Miles being totally restored which is what we all desire. All three are right because they are so far from Miles being totally restored which is what we all desire.
I know this is not a sweet post. Well, it's not all sweet. I can assure you.
Wednesday, November 15, 2006
I want Gum!
Today I was praying for a little boy that I don't know, but I heard he got sent to Cook's Medical Hospital and that he was sick. This of course hits very close to home for me so I've been praying and praying for him.
So, I'm laying down in bed and praying for that little boy, and I'm asking Jesus to go into that hospital to that little boy and heal him immediately. I don't want it to be a healing process. I surely don't want that little boy and his parents to go through any of the devastating things that our family has/is going through. I'm picturing Jesus going into that hospital like a whirlwind, healing that little boy, his parents rejoicing and getting to leave and the doctors sighing with relief and amazement. Then the whole thing is over.
Then I began to wander in my thoughts while I'm praying and ask God how I can pray for this if it didn't happen for me. Jesus didn't come into the hospital, heal Miles and we were out of there rejoicing, yet I have hope that he will do it for that little boy. I know God heals all the time. I've been healed by Jesus. I know several people that have been healed by Jesus. I asked God, "Why do I pray for healings when you are basically going to do whatever it is that you want to do?" It's a funny thing, but after I asked God that I pictured my purse and the secret pocket that I keep my gum in. Every single day, usually several times a day Jocie and Melody ask if they can have a piece of gum. More times than not I say no to them. Sometimes I give them gum, but usually I say no. This does not keep them from asking me because sometimes I do say yes. Now, it's never a matter if I have gum or not. I always have gum. I usually have more than one pack of gum, but I have my reasons for giving or not giving them the gum.
Do I love my kids? Of course I do. Do I want them to be happy? Of course I do. Do I have the power and resource to give them gum any time I want to? Yes I do. Why do I not give them gum any time they ask me? Well, because I'm the Mom and I know that if they go to bed with gum in their mouth that when they wake up it will be a mess in their hair. I know if they have already had gum that day or too much sugar for the day that they just don't need it. I know when they are just bored and they want something to do so they ask me for gum, but it's not really going to meet their need like they think it will. Does that make me a mean Mommy that I won't give them what they want when they want even though I can meet their need? No, it means that I know what's best for them, and when they ask at the right time I will give them gum and they will be able to enjoy it.
Matthew 7:9 Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will you give him a snake? If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those that ask him!
Wow! That was the word of the Lord for me today. He is a good Daddy and he knows what I want more than I think I know what I want.
Does this mean that I should stop asking him to heal my son? Does this mean that I should stop praying for that little boy in the hospital? No. I never mind the girls asking me for gum. The Lord will give me the gum when it's the right timing. I can keep asking if the timing is right. I know because the verse right before the good gift verse is Matthew 7:7 and it says: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks the door will be opened.
Lord, I want you to heal that little boy at Cooks Hospital today. I want you to go in there and heal him instantly. I want the parents to rejoice and take him home. I want the doctors to be able to sigh a breath of relief and be amazed at your healing power.
While you're at it God....heal my son too.
So, I'm laying down in bed and praying for that little boy, and I'm asking Jesus to go into that hospital to that little boy and heal him immediately. I don't want it to be a healing process. I surely don't want that little boy and his parents to go through any of the devastating things that our family has/is going through. I'm picturing Jesus going into that hospital like a whirlwind, healing that little boy, his parents rejoicing and getting to leave and the doctors sighing with relief and amazement. Then the whole thing is over.
Then I began to wander in my thoughts while I'm praying and ask God how I can pray for this if it didn't happen for me. Jesus didn't come into the hospital, heal Miles and we were out of there rejoicing, yet I have hope that he will do it for that little boy. I know God heals all the time. I've been healed by Jesus. I know several people that have been healed by Jesus. I asked God, "Why do I pray for healings when you are basically going to do whatever it is that you want to do?" It's a funny thing, but after I asked God that I pictured my purse and the secret pocket that I keep my gum in. Every single day, usually several times a day Jocie and Melody ask if they can have a piece of gum. More times than not I say no to them. Sometimes I give them gum, but usually I say no. This does not keep them from asking me because sometimes I do say yes. Now, it's never a matter if I have gum or not. I always have gum. I usually have more than one pack of gum, but I have my reasons for giving or not giving them the gum.
Do I love my kids? Of course I do. Do I want them to be happy? Of course I do. Do I have the power and resource to give them gum any time I want to? Yes I do. Why do I not give them gum any time they ask me? Well, because I'm the Mom and I know that if they go to bed with gum in their mouth that when they wake up it will be a mess in their hair. I know if they have already had gum that day or too much sugar for the day that they just don't need it. I know when they are just bored and they want something to do so they ask me for gum, but it's not really going to meet their need like they think it will. Does that make me a mean Mommy that I won't give them what they want when they want even though I can meet their need? No, it means that I know what's best for them, and when they ask at the right time I will give them gum and they will be able to enjoy it.
Matthew 7:9 Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will you give him a snake? If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those that ask him!
Wow! That was the word of the Lord for me today. He is a good Daddy and he knows what I want more than I think I know what I want.
Does this mean that I should stop asking him to heal my son? Does this mean that I should stop praying for that little boy in the hospital? No. I never mind the girls asking me for gum. The Lord will give me the gum when it's the right timing. I can keep asking if the timing is right. I know because the verse right before the good gift verse is Matthew 7:7 and it says: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks the door will be opened.
Lord, I want you to heal that little boy at Cooks Hospital today. I want you to go in there and heal him instantly. I want the parents to rejoice and take him home. I want the doctors to be able to sigh a breath of relief and be amazed at your healing power.
While you're at it God....heal my son too.
Sunday, November 12, 2006
Super Life Group
Today after church we were eating lunch and talking about the upcoming Super Life Group where we will be playing Deal Or No Deal. I told you in a different post that we were fans! We've been so excited about playing it at church because we know it's going to be a blast!
We were talking about who will be Howie. We all agreed that it has to be Billy. No one could be better than Billy. Then we were wondering who would be the Banker, and I thought Brandon Hawk should be in there some where because he's always funny. Then Randy asked if I thought they were going to have "Models" there. I remember hearing Brenda saying that there would not be Models so I said, "No there will not be any Models", and then Jocie said, "SO THAT MEANS I CAN'T GO!" We all laughed so hard. It was so cute!
We were talking about who will be Howie. We all agreed that it has to be Billy. No one could be better than Billy. Then we were wondering who would be the Banker, and I thought Brandon Hawk should be in there some where because he's always funny. Then Randy asked if I thought they were going to have "Models" there. I remember hearing Brenda saying that there would not be Models so I said, "No there will not be any Models", and then Jocie said, "SO THAT MEANS I CAN'T GO!" We all laughed so hard. It was so cute!
Wedding Talk
I was making breakfast this morning when Jocie came up to me and told me that when she wants to get married when she's a Mommy. I explained to her that first she gets married and then she gets to be a Mommy. She said, "Oh, okay. I was dreaming about it, and I know who I'm going to marry." I asked her who it was and she said, "Payton." I smiled at her and told her that she should be praying for her future husband. I told her that she should pray that God would send her the PERFECT husband for her. She said, "Okay then, I will pray for Poppa!"
Thursday, November 09, 2006
AMEN!
Rachel your gonna love this one!!!!!!!!
Tonight at dinner Jocie prayed for our food before we ate. While she was praying she thanked Heaven. Then Melody said, "Yes, Thank EVAN and Payton!"
Tonight at dinner Jocie prayed for our food before we ate. While she was praying she thanked Heaven. Then Melody said, "Yes, Thank EVAN and Payton!"
Theology Moment By Jocie
We were eating dinner when Jocie pointed to the sour cream and said, "I know why it's called Sour Cream. It's because God is in heaven. And he's not the only one that's good. Jesus is good. And, no one can color good like God and Jesus. They color gooder."
Tuesday, November 07, 2006
Just a spoon full of Medicine helps the Medicine go Down.
I had to make a chart today for Miles' medicine. I know it all in my head, but when Randy tries to get the medicine he doesn't have a clue so I always have to rattle off medication names and doses. I printed the list out and taped it on the inside of our kitchen cabinet. I thought you might be interested. This is the stuff he takes Every Day!
Morning:
· Artane 6mL
· Calritin ½ tsp.
· Prevacid 1 tablet (just pop in his mouth whole)
· Topamax 1 capsule (give in solid food only)
· Mannatech AO 1 cap
· Mannatech Sport 1 cap
· Mannatech PhytAloe ¼ tsp.
· Mannatech Ambro 1 tsp.
Noon:
· Artane 6mL
· Mannatech AO 1 cap
· Mannatech Sport 1 cap
· Mannatech PhytAloe ¼ tsp.
· Mannatech Ambro 1 tsp.
Night:
· Artane 6mL
· Topamax 1 capsule (give in solid food only)
· Prevacid 1 tablet (just pop in his mouth whole)
· Mannatech AO 1 cap
· Mannatech Sport 1 cap
· Mannatech PhytAloe ¼ tsp.
· Mannatech Ambro 1 tsp.
· Pulmicort 1 vial
As needed:
Cough/wheezing- Albuterol 1 vial
Cough/congestion- Norel DM 1 tsp.
November Miralax schedule: ¼ Capful
Tuesday 7, Thursday 9, Saturday 11, Monday 13, Wednesday 15, Friday 17, Sunday 19, Tuesday 21, Thursday 23, Saturday 25, Monday 27, Wednesday 29
Morning:
· Artane 6mL
· Calritin ½ tsp.
· Prevacid 1 tablet (just pop in his mouth whole)
· Topamax 1 capsule (give in solid food only)
· Mannatech AO 1 cap
· Mannatech Sport 1 cap
· Mannatech PhytAloe ¼ tsp.
· Mannatech Ambro 1 tsp.
Noon:
· Artane 6mL
· Mannatech AO 1 cap
· Mannatech Sport 1 cap
· Mannatech PhytAloe ¼ tsp.
· Mannatech Ambro 1 tsp.
Night:
· Artane 6mL
· Topamax 1 capsule (give in solid food only)
· Prevacid 1 tablet (just pop in his mouth whole)
· Mannatech AO 1 cap
· Mannatech Sport 1 cap
· Mannatech PhytAloe ¼ tsp.
· Mannatech Ambro 1 tsp.
· Pulmicort 1 vial
As needed:
Cough/wheezing- Albuterol 1 vial
Cough/congestion- Norel DM 1 tsp.
November Miralax schedule: ¼ Capful
Tuesday 7, Thursday 9, Saturday 11, Monday 13, Wednesday 15, Friday 17, Sunday 19, Tuesday 21, Thursday 23, Saturday 25, Monday 27, Wednesday 29
Human Antenna
Our family is a huge Deal or No Deal fan! It's really one of the only shows we watch on TV. We don't have cable so our stations are fuzzy a lot of time. Usually Joey or Randy can mess with the antenna and get it watchable. It doesn't really bother us because like I said, we don't watch a lot of TV. Well, last night I was feeding Miles, Randy was holding Melody and the TV needed to be fixed so we could watch Deal or No Deal. I couldn't get up and Randy didn't want to get up so he told Jocie to go stand by the TV for a second to see if it cleared up. It did, but only for a second so he had Jocie go over by the TV again and it straightened up nicely. Jocie stood there for a minute and then said, "Hey, that's weird. I think I have skills."
Monday, November 06, 2006
Peace to Josh in the Name of Jesus!
This morning when I woke up I asked the Lord to be Master of my day. I haven't thought to ask that in a very long time. Well, after I got up and the events of the day started rolling I thought that God must not have heard me because my day was a tangled mess of double booked appointments for Miles, then cancelled appointments, chasing down insurance cards and somehow grocery shopping in the middle of that.
Since we have moved into our new home I have not received Miles' monthly insurance cards in the mail. This is a big problem! This means that the first time in the month that he has an appointment outside of the home I have to go to the insurance office and have them make me a temporary card. I can only do this on the day of an appointment. This always makes everything a little more tricky. I have filled out a change of address twice and my husband has done it once in the insurance office, but the cards still didn't come to our house. Finally someone from the office told me that I had to go to the Social Security office to change his address because he is disabled. That's why I wasn't getting his cards at my house. Well, the Social Security Office is no place to drop in quickly and get out. I mean, you need to pack a lunch (not that you can eat in there but you get the point.) It takes forever!
So, I decide today is the day I will go there because I had to cancel one of Miles' appointments today because the office would not take a temporary card. I was determined to go and just wait out the crowd. I got a babysitter for the kids, grabbed a card making kit that I got from my Secret Sister yesterday (thank you) and off I went. Before I could go there I had to chase down Randy at his office and get some legitimate mail to prove that I live where I live. Of course that was in total opposite direction of where I needed to be, but I pressed through.
So, I get to the SS office and it was packed! I went to the automated 1st window and had to explain to the touch computer screen what I needed. The computer told me to wait while it printed me a number. He gave me B248. I found a seat and began to pull out my card making stuff. At first I was a little self conscience, but then I thought...Hey, at least I'm not bored. I quickly got into it and I was excited that I was using my waiting time so well.
While I was sitting there I was eaves dropping (one of my favorite past times). I was listening to a grandmother speaking to a nurse that was in front of her. The grandmother was telling her about how her daughter had been very sick. They chatted for awhile before the nurse was called up to the window with a real person in it.
That left the grandmother, her husband and her grandson to talk. I didn't hear anything they were saying but I caught myself praying for the young man. He was about 15. I kept seeing him lay his head on his grandmother's shoulder and she would rub his head kindly. The grandpa had a sweet smile and he kept making the boy laugh. I figured that the grandparents were raising the young man and I began to pray that they would raise him in a way that he would be able to function well as an adult.
Well, I was a busy bee making my cards when the grandparents number was called. B241. "Bingo" the grandma called. I couldn't help but smile at her. As soon as the grandparents got up the young man looked at me and said, "I never thought we were going to be here so long!" I told him that I had a feeling I would be that's why I brought along a project. After I said that he got up out of his seat and came to sit by me. That's when he began to tell me about his Mom. She died just last week of a massive heart attack. She was sick her whole life and she already had 5 heart attacks before the last one. She was in and out of hospitals for so long, and she finally told her husband that she didn't want to go anymore. My heart was broken for him. First of all I was so amazed that he would come over to me and tell me these things. I felt so honored. I sat there and cried while he told me about his Mom and his last week with her. I asked him his name and he said it was Josh. I told Josh that I would be praying for him all day. He had the softest face and thanked me wholeheartedly. He told me that his Mom was full of faith. He also told me that last week he spent most of his time in the chapel. The doctors finally showed his family his Mom's brain scan and her brain was dead. She was on life support and they had to decide to keep her on it or to take her off. He said, "I didn't want to make that decision so I told God that he was going to have to make that call, and He did. Pretty soon after that she died." I just kept saying, "Oh, Sweetheart. I'm so sorry." I never call anyone sweetheart. I even surprised myself by saying it, but I figured it was what the Lord wanted me to say. Then he told me something amazing. He said, "I know people might think I'm crazy but I told the Lord I would like to have one more conversation with my Mom." He knew that her brain was dead but he wanted to talk to her one more time. He said that after he prayed that she was totally alert and looking at him and they were able to have their own conversation together. He said that her face was totally normal and she was talking to him. She didn't look sick at all. Soon after that she died.
Here I am crying for him, having no answers or words of wisdom, but deep compassion for him and his family. His grandparents were done with their business. They had gone up there to terminate the Mom's insurance since she had died. As they were leaving I grabbed his hand and told him again that I would be praying for him. He thanked me so warmly that I can't get his sweet face out of my head.
As soon as his foot hit the door my number was called B248. Bingo! I thought. Not because it was my turn, but because God had been Master of my day.
Since we have moved into our new home I have not received Miles' monthly insurance cards in the mail. This is a big problem! This means that the first time in the month that he has an appointment outside of the home I have to go to the insurance office and have them make me a temporary card. I can only do this on the day of an appointment. This always makes everything a little more tricky. I have filled out a change of address twice and my husband has done it once in the insurance office, but the cards still didn't come to our house. Finally someone from the office told me that I had to go to the Social Security office to change his address because he is disabled. That's why I wasn't getting his cards at my house. Well, the Social Security Office is no place to drop in quickly and get out. I mean, you need to pack a lunch (not that you can eat in there but you get the point.) It takes forever!
So, I decide today is the day I will go there because I had to cancel one of Miles' appointments today because the office would not take a temporary card. I was determined to go and just wait out the crowd. I got a babysitter for the kids, grabbed a card making kit that I got from my Secret Sister yesterday (thank you) and off I went. Before I could go there I had to chase down Randy at his office and get some legitimate mail to prove that I live where I live. Of course that was in total opposite direction of where I needed to be, but I pressed through.
So, I get to the SS office and it was packed! I went to the automated 1st window and had to explain to the touch computer screen what I needed. The computer told me to wait while it printed me a number. He gave me B248. I found a seat and began to pull out my card making stuff. At first I was a little self conscience, but then I thought...Hey, at least I'm not bored. I quickly got into it and I was excited that I was using my waiting time so well.
While I was sitting there I was eaves dropping (one of my favorite past times). I was listening to a grandmother speaking to a nurse that was in front of her. The grandmother was telling her about how her daughter had been very sick. They chatted for awhile before the nurse was called up to the window with a real person in it.
That left the grandmother, her husband and her grandson to talk. I didn't hear anything they were saying but I caught myself praying for the young man. He was about 15. I kept seeing him lay his head on his grandmother's shoulder and she would rub his head kindly. The grandpa had a sweet smile and he kept making the boy laugh. I figured that the grandparents were raising the young man and I began to pray that they would raise him in a way that he would be able to function well as an adult.
Well, I was a busy bee making my cards when the grandparents number was called. B241. "Bingo" the grandma called. I couldn't help but smile at her. As soon as the grandparents got up the young man looked at me and said, "I never thought we were going to be here so long!" I told him that I had a feeling I would be that's why I brought along a project. After I said that he got up out of his seat and came to sit by me. That's when he began to tell me about his Mom. She died just last week of a massive heart attack. She was sick her whole life and she already had 5 heart attacks before the last one. She was in and out of hospitals for so long, and she finally told her husband that she didn't want to go anymore. My heart was broken for him. First of all I was so amazed that he would come over to me and tell me these things. I felt so honored. I sat there and cried while he told me about his Mom and his last week with her. I asked him his name and he said it was Josh. I told Josh that I would be praying for him all day. He had the softest face and thanked me wholeheartedly. He told me that his Mom was full of faith. He also told me that last week he spent most of his time in the chapel. The doctors finally showed his family his Mom's brain scan and her brain was dead. She was on life support and they had to decide to keep her on it or to take her off. He said, "I didn't want to make that decision so I told God that he was going to have to make that call, and He did. Pretty soon after that she died." I just kept saying, "Oh, Sweetheart. I'm so sorry." I never call anyone sweetheart. I even surprised myself by saying it, but I figured it was what the Lord wanted me to say. Then he told me something amazing. He said, "I know people might think I'm crazy but I told the Lord I would like to have one more conversation with my Mom." He knew that her brain was dead but he wanted to talk to her one more time. He said that after he prayed that she was totally alert and looking at him and they were able to have their own conversation together. He said that her face was totally normal and she was talking to him. She didn't look sick at all. Soon after that she died.
Here I am crying for him, having no answers or words of wisdom, but deep compassion for him and his family. His grandparents were done with their business. They had gone up there to terminate the Mom's insurance since she had died. As they were leaving I grabbed his hand and told him again that I would be praying for him. He thanked me so warmly that I can't get his sweet face out of my head.
As soon as his foot hit the door my number was called B248. Bingo! I thought. Not because it was my turn, but because God had been Master of my day.
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