Friday, December 23, 2011
Monday, December 5, 2011
A lot has happened since my last post. We had one trip to the Emergency Room, Madison turned four and we celebrated Thanksgiving!
Yes, that is correct. We did have to make a trip to the Emergency Room. About a week after we got home from Birmingham, Madison took an afternoon nap as usual. Shortly after she woke up I noticed dried blood in her left ear. I cleaned it up and couldn't figure out why she was having this. She was showing no signs of having an ear infection. No fever, not pulling at her ears. We decided to keep an eye on it and if it got worse, we would go to the doctor. My only issue was that it was the weekend.
The next morning when she woke up, it was a lot worse. I called the on-call nurse and she advised us that we should go to the ER. I cringed when I heard this. We try so hard to keep Madison healthy and now we were having to take her to the ER! We called quite a few people on the way there to let them know what was going on and to have them start praying for Madison and our ER visit. Our prayers were answered because that was the fastest ER trip we have ever had. We were only there for 30 minutes-- from the time I signed in to the time we walked out!! We couldn't believe it.
Madison had an ear infection that caused her ear drum to rupture, causing all the bleeding. They said that once the ear drum ruptures it relieves the pain. We are still shocked at how high her pain tolerance is. It is scary and amazing all at the same time.
This is a picture of her ear on Saturday. It was taken from my cell phone so that is why it is blurry.
I just took her back to the pediatrician this week for her four year well check. Madison weighed 20 lbs 12 oz! Her ear drum still has a hole in it but is looking better.
Madison celebrated her 4th birthday on November 16. It is still hard to believe that she is 4 years old. Mom and Dad had planned on coming up to the house to celebrate with her that night but because Dad didn't feel well, we loaded up and went to their house. Madison loved all of her presents. This video is the sweetest video of Dad telling Madison a story. Since Madison was a baby, Dad always tells Madison these kind of stories and she absolutely loves them. The video is kind of long. Mom was unloading the dishwasher. It didn't seem loud at the time but once I watched it back it was. Sorry about that.
The next video is of Madison doing one of her favorite things. She loves to play soccer and we try to play at least once a day. She has gotten pretty good at kicking the ball in her walker. I laugh at this video every time I watch it. She had just started asking for a bottle which she calls a "baba". When she drinks her "baba" she has to have her pappy (pacifier) and her poons (spoons) right there beside. If you forget any of the above you can forget about her drinking a baba!
Yes, that is correct. We did have to make a trip to the Emergency Room. About a week after we got home from Birmingham, Madison took an afternoon nap as usual. Shortly after she woke up I noticed dried blood in her left ear. I cleaned it up and couldn't figure out why she was having this. She was showing no signs of having an ear infection. No fever, not pulling at her ears. We decided to keep an eye on it and if it got worse, we would go to the doctor. My only issue was that it was the weekend.
The next morning when she woke up, it was a lot worse. I called the on-call nurse and she advised us that we should go to the ER. I cringed when I heard this. We try so hard to keep Madison healthy and now we were having to take her to the ER! We called quite a few people on the way there to let them know what was going on and to have them start praying for Madison and our ER visit. Our prayers were answered because that was the fastest ER trip we have ever had. We were only there for 30 minutes-- from the time I signed in to the time we walked out!! We couldn't believe it.
Madison had an ear infection that caused her ear drum to rupture, causing all the bleeding. They said that once the ear drum ruptures it relieves the pain. We are still shocked at how high her pain tolerance is. It is scary and amazing all at the same time.
This is a picture of her ear on Saturday. It was taken from my cell phone so that is why it is blurry.
This is her ear on Sunday.
I just took her back to the pediatrician this week for her four year well check. Madison weighed 20 lbs 12 oz! Her ear drum still has a hole in it but is looking better.
Madison celebrated her 4th birthday on November 16. It is still hard to believe that she is 4 years old. Mom and Dad had planned on coming up to the house to celebrate with her that night but because Dad didn't feel well, we loaded up and went to their house. Madison loved all of her presents. This video is the sweetest video of Dad telling Madison a story. Since Madison was a baby, Dad always tells Madison these kind of stories and she absolutely loves them. The video is kind of long. Mom was unloading the dishwasher. It didn't seem loud at the time but once I watched it back it was. Sorry about that.
The next video is of Madison doing one of her favorite things. She loves to play soccer and we try to play at least once a day. She has gotten pretty good at kicking the ball in her walker. I laugh at this video every time I watch it. She had just started asking for a bottle which she calls a "baba". When she drinks her "baba" she has to have her pappy (pacifier) and her poons (spoons) right there beside. If you forget any of the above you can forget about her drinking a baba!
I'll close with this last picture of Madison. She just got a haircut on Saturday but her hair was out of control! Literally!! We could not keep it out of her eyes. I was cooking dinner one night and she was in her chair in the kitchen playing. She was getting mad because her hair was in her face but I couldn't leave what I was cooking to go get a bow. I took my ponytail holder out of my hair and pulled Madison's back. Madison got very mad with how I styled her hair and didn't mind showing me! I got this look until I took it down!
Friday, November 11, 2011
Things have been really busy since my last post. We got to spend 10 days with Amy and Aubrey and had such a great time. We have also made two trips to Birmingham. One was for Dad and the second one was for Madison and Dad.
I will post pictures from Amy and Aubrey's visit very soon. Since I haven't updated in SO LONG, I wanted to give a quick update on Madison and post a few videos.
Madison had her six month check up last week in Birmingham. She saw her genetic, cardiologist, and pulmonary doctors. I am very happy to report that all three of these appointments went great.
Her cardiologist has been monitoring some thickness in the aortic valve for two years now and has seen no changes. He was confident enough to say that he felt comfortable moving Madison to 12 month check ups instead of 6 month. I however, was not that confident. My reasoning behind it was because all the other I-Cell children see their cardiologist every 6 months and there is a reason for that. Even though Madison's heart is looking great, if something does get worse I want to catch it early. Luckily, the doctor said he would do whatever makes us happy so we are staying with every 6 months.
Madison's pulmonary appointment went well also. Our pulmonary doctor has been wanting to do a sleep study on Madison for about a year now and Shane and I haven't agreed to it. She has already had 3 of them. With the first one, to our surprise, Madison did great. The second one, not so much. At the third one, as we arrived at the hospital and got checked in, I decided not to put her through it, so really she has only had 2.
At the first sleep study it was determined that Madison needed oxygen at night. She initially started out at half a liter of oxygen but she is now at one liter. We have the pulse ox machine that alerts us if Madison's oxygen levels or her heart rate drop at all. She doesn't sleep with the pulse ox every night unless she is sick. The pulmonary doctor is concerned about Madison having high CO2 levels. She isn't showing any symptoms of having them but he does want to monitor her levels every year which can only be done by a sleep study. We have agreed to do a sleep study in the spring but it is still early. I am going to do a lot of research and ask the other parents of I-Cell children and then decide if we need to put Madison through it.
All of Madison's appointments were on last Wednesday. Dad had his appointments on Tuesday. He had a CT scan and blood work done that morning and then we met with the oncologist that afternoon. We learned that the tumor that extends from his liver into the lungs and heart has shrunk a little. The bad news is that there are new lesions on the liver. He was able to get another chemo treatment and will go back in 3 weeks for another treatment and then another CT scan 3 weeks after that. We are hoping and praying that we receive good news at that appointment.
I'm sorry that the blog has been put on the back burner here lately. Our plate has been full. With Madison and me being in for the winter now, I should be able to post more regularly. Thank you for checking in on Madison and keeping her and our entire family in your thoughts and prayers.
I have taken several videos but wanted to get these two on the blog. Since we aren't able to get Madison out, we have been watching our church services online. To say that Madison LOVES the music is an understatement. She dances like crazy when we are watching the music portion of the service. This video was just too cute not to share.
I will post pictures from Amy and Aubrey's visit very soon. Since I haven't updated in SO LONG, I wanted to give a quick update on Madison and post a few videos.
Madison had her six month check up last week in Birmingham. She saw her genetic, cardiologist, and pulmonary doctors. I am very happy to report that all three of these appointments went great.
Her cardiologist has been monitoring some thickness in the aortic valve for two years now and has seen no changes. He was confident enough to say that he felt comfortable moving Madison to 12 month check ups instead of 6 month. I however, was not that confident. My reasoning behind it was because all the other I-Cell children see their cardiologist every 6 months and there is a reason for that. Even though Madison's heart is looking great, if something does get worse I want to catch it early. Luckily, the doctor said he would do whatever makes us happy so we are staying with every 6 months.
Madison's pulmonary appointment went well also. Our pulmonary doctor has been wanting to do a sleep study on Madison for about a year now and Shane and I haven't agreed to it. She has already had 3 of them. With the first one, to our surprise, Madison did great. The second one, not so much. At the third one, as we arrived at the hospital and got checked in, I decided not to put her through it, so really she has only had 2.
At the first sleep study it was determined that Madison needed oxygen at night. She initially started out at half a liter of oxygen but she is now at one liter. We have the pulse ox machine that alerts us if Madison's oxygen levels or her heart rate drop at all. She doesn't sleep with the pulse ox every night unless she is sick. The pulmonary doctor is concerned about Madison having high CO2 levels. She isn't showing any symptoms of having them but he does want to monitor her levels every year which can only be done by a sleep study. We have agreed to do a sleep study in the spring but it is still early. I am going to do a lot of research and ask the other parents of I-Cell children and then decide if we need to put Madison through it.
All of Madison's appointments were on last Wednesday. Dad had his appointments on Tuesday. He had a CT scan and blood work done that morning and then we met with the oncologist that afternoon. We learned that the tumor that extends from his liver into the lungs and heart has shrunk a little. The bad news is that there are new lesions on the liver. He was able to get another chemo treatment and will go back in 3 weeks for another treatment and then another CT scan 3 weeks after that. We are hoping and praying that we receive good news at that appointment.
I'm sorry that the blog has been put on the back burner here lately. Our plate has been full. With Madison and me being in for the winter now, I should be able to post more regularly. Thank you for checking in on Madison and keeping her and our entire family in your thoughts and prayers.
I have taken several videos but wanted to get these two on the blog. Since we aren't able to get Madison out, we have been watching our church services online. To say that Madison LOVES the music is an understatement. She dances like crazy when we are watching the music portion of the service. This video was just too cute not to share.
The next one is of Madison watching her friends, Reed and Mason, say the Pledge of Allegiance and sing a song at church. She likes to watch this video ALL THE TIME! She was so proud of them for the great job that they did.
Tuesday, September 27, 2011
Life is going by way too fast. I can't believe it is almost October! Madison and I only have a few more weeks until we are in for the winter. I am finding it so hard to believe that Madison is going to be 4 on November 16! Four!!! When did this happen?
There is a lot of mixed emotions every time her birthday comes around. A parent should never have to think about how many more birthdays they are going to get to share with their child but that is a thought that crosses mine every year. I just put my faith in the Lord and pray that we have many to share together.
There are a lot of reasons why I haven't posted lately. The main reason is time. Madison loves to snuggle. She sleeps so much better when you are right there beside her holding her hand. With Madison sleeping with us every night she will not go to sleep until we go to sleep and when we wake up, she is up. Don't even think about laying her down in the bed and not staying there with her! She isn't going to have it.
For the past few months, I normally wake up when Shane leaves to go to work and just stay in the bed with Madison because she will cry if I leave her and she needs the sleep. It is the same thing when she goes down for her nap. I will lay down with her and sometimes I will nap with her but a lot of times I spend that time in prayer over Madison. There are things that need to be done around the house but those "things" with always be there. I am not going to have this time with Madison forever and I want to cherish every second of it.
Last Monday, Madison woke up with a high fever and I wasn't feeling great either. I took her to the doctor and she had an inner ear infection and is cutting her canine teeth. With Madison's gums being so thick, it is hard and painful for her teeth to come through. She is doing better with them now since they have broken through the gums.
I went to the doctor on Tuesday because my throat was getting worse. I had tonsillitis! I had forgotten how painful that is. Madison and I were both on antibiotics and spent most of the week laid up in the bed watching episodes of Good Luck Charlie back to back to back!
I have a lot to post since I haven't posted in awhile but I didn't want to make the blog too long today. A lot has been going on in the last six weeks since I posted. We are excited that Amy and Aubrey have a trip planned and are coming down for 10 days! I can't tell you how excited we are. October 11 can't get here fast enough. I will try to post some more tomorrow but I couldn't not blog without including some videos of Madison. I will add some pictures as well this week. Love to you all!
Madison has a new magic trick she would like to show everyone. She does this trick at every meal. My favorite part is the "Ta Da!"
The next two are of Madison doing one of her favorite things. Running up and down the drive way. I posted two because one of them was too funny not to. I feel like we live in the country but we really don't. However, we do hear a lot of gun shots. Not because it is a dangerous neighborhood but there are people that shoot skeet near us and ducks or something. Who knows! This time a year, hearing a gun shot is not out of the ordinary. Every time Madison hears one she goes, "Boom Boom!" I just happened to be video taping her when one went off.
There is a lot of mixed emotions every time her birthday comes around. A parent should never have to think about how many more birthdays they are going to get to share with their child but that is a thought that crosses mine every year. I just put my faith in the Lord and pray that we have many to share together.
There are a lot of reasons why I haven't posted lately. The main reason is time. Madison loves to snuggle. She sleeps so much better when you are right there beside her holding her hand. With Madison sleeping with us every night she will not go to sleep until we go to sleep and when we wake up, she is up. Don't even think about laying her down in the bed and not staying there with her! She isn't going to have it.
For the past few months, I normally wake up when Shane leaves to go to work and just stay in the bed with Madison because she will cry if I leave her and she needs the sleep. It is the same thing when she goes down for her nap. I will lay down with her and sometimes I will nap with her but a lot of times I spend that time in prayer over Madison. There are things that need to be done around the house but those "things" with always be there. I am not going to have this time with Madison forever and I want to cherish every second of it.
Last Monday, Madison woke up with a high fever and I wasn't feeling great either. I took her to the doctor and she had an inner ear infection and is cutting her canine teeth. With Madison's gums being so thick, it is hard and painful for her teeth to come through. She is doing better with them now since they have broken through the gums.
I went to the doctor on Tuesday because my throat was getting worse. I had tonsillitis! I had forgotten how painful that is. Madison and I were both on antibiotics and spent most of the week laid up in the bed watching episodes of Good Luck Charlie back to back to back!
I have a lot to post since I haven't posted in awhile but I didn't want to make the blog too long today. A lot has been going on in the last six weeks since I posted. We are excited that Amy and Aubrey have a trip planned and are coming down for 10 days! I can't tell you how excited we are. October 11 can't get here fast enough. I will try to post some more tomorrow but I couldn't not blog without including some videos of Madison. I will add some pictures as well this week. Love to you all!
Madison has a new magic trick she would like to show everyone. She does this trick at every meal. My favorite part is the "Ta Da!"
The next two are of Madison doing one of her favorite things. Running up and down the drive way. I posted two because one of them was too funny not to. I feel like we live in the country but we really don't. However, we do hear a lot of gun shots. Not because it is a dangerous neighborhood but there are people that shoot skeet near us and ducks or something. Who knows! This time a year, hearing a gun shot is not out of the ordinary. Every time Madison hears one she goes, "Boom Boom!" I just happened to be video taping her when one went off.
Thursday, August 18, 2011
I am a part of a Bunko group and every third Thursday of the month we get together and play. I am looking forward to the great fellowship and lots of laughter tonight. With that being said I hope Shane has just as much fun tonight with just him and Madison. Normally, Madison will take a two hour nap each day but she did not get one in today. She didn't wake up until 10:30 but I felt like she would at least take a 30 minute nap. I recorded Madison talking away as she was laying down. Not only did she talk like this the entire hour I made her rest. She has talked like this all day!! I don't know where she gets it from! (sarcasm) =) I just wish I knew what all she was saying because she has got a lot to say these days! 7
Sorry the post is short tonight but I am running behind as usual!!
Sorry the post is short tonight but I am running behind as usual!!
Wednesday, August 17, 2011
Well I guess it's true that there is a first time for every thing. Madison is such a good child and very rarely do I have to get on to her but there are times where she does get in trouble. I know...hard to believe. She is still continuing to feed herself and is doing really good with it.
However, today at lunch was not so good. She had fed herself some of the fruits and vegetables but was playing with the spoon more than eating. I took the spoon away and started feeding her myself. When it got time for her to eat her yogurt she was already mad because I wouldn't let her feed herself because she was playing with the spoon. I had corrected her several time but she kept doing it so I wasn't going to let her try again.
I had a spoonful of yogurt getting ready to go into her mouth and Madison got really mad and swatted my hand away causing the yogurt to go every where and I dropped the spoon. Of course she got in trouble for this and I was telling her that we don't do that and that she wasn't getting any more yogurt. As I am cleaning up the table I am telling her why we don't do that and I look over at Madison and my heart just broke! She was sitting in her high chair with her head bowed down and her bottom lip poking out. She knew she was in trouble. I kept thinking she was going to cry but she never did. I had to stay focused on the issue and over look it but I came close to giving in.
When you all see the video that I am going to post tonight you are going to be mad that I got on to her for that at lunch. I did not teach Madison good tonight at dinner but her laugh was just to hilarious. We were eating dinner and as I am putting a piece of food in my mouth and I completely missed my mouth. Madison was watching me and broke out laughing. I did it again on purpose just to get another laugh out of her and it was such a hardy laugh that I ran and got the video camera. Well of course she wouldn't do it with the video camera rolling. So this is where I am teaching her bad. I started throwing little pieces of bread up and catching them in my mouth. Well the video alone will show you how funny Madison thought this was.
Needless to say Madison got over the incident at lunch pretty fast and did great at dinner. She didn't play with her spoon at least! Progress!!! I can not begin to tell you the fun that she and I have everyday. Our days are filled with fun and laughter but when Madison laughs like this, it just makes all of our troubles and worries go away.
However, today at lunch was not so good. She had fed herself some of the fruits and vegetables but was playing with the spoon more than eating. I took the spoon away and started feeding her myself. When it got time for her to eat her yogurt she was already mad because I wouldn't let her feed herself because she was playing with the spoon. I had corrected her several time but she kept doing it so I wasn't going to let her try again.
I had a spoonful of yogurt getting ready to go into her mouth and Madison got really mad and swatted my hand away causing the yogurt to go every where and I dropped the spoon. Of course she got in trouble for this and I was telling her that we don't do that and that she wasn't getting any more yogurt. As I am cleaning up the table I am telling her why we don't do that and I look over at Madison and my heart just broke! She was sitting in her high chair with her head bowed down and her bottom lip poking out. She knew she was in trouble. I kept thinking she was going to cry but she never did. I had to stay focused on the issue and over look it but I came close to giving in.
When you all see the video that I am going to post tonight you are going to be mad that I got on to her for that at lunch. I did not teach Madison good tonight at dinner but her laugh was just to hilarious. We were eating dinner and as I am putting a piece of food in my mouth and I completely missed my mouth. Madison was watching me and broke out laughing. I did it again on purpose just to get another laugh out of her and it was such a hardy laugh that I ran and got the video camera. Well of course she wouldn't do it with the video camera rolling. So this is where I am teaching her bad. I started throwing little pieces of bread up and catching them in my mouth. Well the video alone will show you how funny Madison thought this was.
Needless to say Madison got over the incident at lunch pretty fast and did great at dinner. She didn't play with her spoon at least! Progress!!! I can not begin to tell you the fun that she and I have everyday. Our days are filled with fun and laughter but when Madison laughs like this, it just makes all of our troubles and worries go away.
Tuesday, August 16, 2011
I realized yesterday after posting the video how much people have missed me not posting on a regular basis. All the sweet comments and texts letting me know made me feel very humbled to know that so many people are going down this journey with us. After seeing the response of people that love to follow what's going on with Madison I am going to make it a priority to get back to blogging regularly.
I took some videos tonight of Madison that were too cute not to share. Madison LOVES this show that comes on Disney called Good Luck Charlie. When this show comes on Madison goes crazy!!! She can't get enough of it. Not going to lie...Shane and I like it too! I took a video of Madison dancing when she hears the theme song. She would literally watch this show all day if we let her.
Many of you know how much Madison likes to dance. The girl has got some rhythm!...she gets that from her Aunt Amy! Well...another Disney story. When we are watching Disney through out the day they will play music videos of some of the Disney stars. Madison dances to all of them. I just happened to have the video camera handy when one of them was coming on and happened to get Madison breaking it down!
I took some videos tonight of Madison that were too cute not to share. Madison LOVES this show that comes on Disney called Good Luck Charlie. When this show comes on Madison goes crazy!!! She can't get enough of it. Not going to lie...Shane and I like it too! I took a video of Madison dancing when she hears the theme song. She would literally watch this show all day if we let her.
Many of you know how much Madison likes to dance. The girl has got some rhythm!...she gets that from her Aunt Amy! Well...another Disney story. When we are watching Disney through out the day they will play music videos of some of the Disney stars. Madison dances to all of them. I just happened to have the video camera handy when one of them was coming on and happened to get Madison breaking it down!
Monday, August 15, 2011
Well things haven't been too crazy for us. I haven't updated the blog in awhile because I just haven't had too much to post. We had something exciting happen at the Riley house tonight and I couldn't wait to get the videos uploaded to post to the blog. Madison will be 4 on November 16. That is so hard to believe. Tonight at dinner, Madison fed herself all BY HERSELF!!! I am still shocked. She has tried to do this in the past but gives up quickly because she can never keep the food on the spoon. Tonight was a totally different story. She was able to keep the food on the spoon and able to dip the spoon in to the food without much help. Shane and I are some very proud parents tonight. Madison looked at me like I was crazy when I started crying but they were tears of joy! The videos are posted below.
Thanks for being patient with me while I haven't updated like I used to. Madison and I only have about 8 more weeks until we are in for the winter. I know then I will probably post daily again because we will have a lot of time on our hands.
Madison has been talking up a storm! I wish I could understand what all she is trying to tell me but I haven't been able to figure it out yet. Whatever she is saying is pretty funny to her because she can't stop laughing after she says it.
I guess you could say we have had a pretty big week around here. Madison also has started hugging your neck. I have waited so long to have her wrap her arms around my neck. She can't go completely around your neck but if you hold her up high, enough she will come pretty close. We are so proud of her. She is doing more every day. My heart it very swelling tonight with pride! Love to you all!
Thanks for being patient with me while I haven't updated like I used to. Madison and I only have about 8 more weeks until we are in for the winter. I know then I will probably post daily again because we will have a lot of time on our hands.
Madison has been talking up a storm! I wish I could understand what all she is trying to tell me but I haven't been able to figure it out yet. Whatever she is saying is pretty funny to her because she can't stop laughing after she says it.
I guess you could say we have had a pretty big week around here. Madison also has started hugging your neck. I have waited so long to have her wrap her arms around my neck. She can't go completely around your neck but if you hold her up high, enough she will come pretty close. We are so proud of her. She is doing more every day. My heart it very swelling tonight with pride! Love to you all!
Wednesday, July 13, 2011
Once again, things are CRAZY in the Riley house! Madison is battling yet another cold/ear infection/possible allergies. We were at the doctor on Thursday, Friday, and Monday.
Wednesday night Madison started getting congested and first thing Thursday morning I called the pediatrician. After she examined her, she said that Madison had an ear infection that we are treating with oral antibiotics and ear drops. The ear is looking much better but Madison still has a lot of congestion and a horrible cough.
Friday we started doing breathing treatments every 4 hours and Madison started a nose spray to help with the congestion. Friday and all weekend she was running a fever. I called our Pulmonary doctor on Saturday and talked with him about what all we needed to do. We just stuck with the initial plan and tried to give it time to work. Monday she was getting worse so back to the doctor we go. We called Birmingham on Monday while at the pediatrician's office. Our pulmonary doctor didn't get the message until after 5:00.
Madison took a long nap on Monday afternoon and didn't wake up until 6:15. Once she was up she was coughing NON STOP. Finally, the pulmonary doctor called and he was able to hear Madison have one of her coughing spells. Since Madison had coughed so much she threw up. This is the second time she has ever done this and it scares us to death! We could tell though that once she got all the mucus out of her she was feeling a little bit better. The pulmonary doctor wanted us to start her on a high dose of steroids last night and another this morning. Then the dosage will slowly start going down over the next five days. Luckily, we always have extra for times like this. She is already starting to feel some what better.
It is very unusual for Madison to have a relapse this close together. If she has another one, we are going to go meet with an allergy doctor to see if that is what we are dealing with.
Other than that, things have been going good. We are taking full advantage of this warmer weather and having lots of play dates and getting out as much as possible. I can't believe we only have 3 months until Madison is in all winter!
Since we have kept Madison is all winter I have gotten spoiled by her staying so healthy. Before these past two colds, she hasn't been sick since last September. I had forgotten how bad they really are on her.
Dad started his chemo tablet two weeks ago. He has already lost close to 15 pounds in fluids. From what the doctors have told us that is a good sign that the chemo is working. Mom and Dad just went up to Birmingham today and he got a good report. They will go back in four weeks to have another PET scan and we just pray that the tumor has shrunk.
I couldn't end the blog without a few videos of Madison. I have taken so many that I want to post so I will HAVE to start updating more regularly. I hope you enjoy them.
Okay...so most of you that know me real well, know that I am borderline OCD when it comes to our house. I HAVE to clean the house at least once a week from top to bottom. It also has to be clean before we go to bed each night. I think I have gotten a little bit better since Madison was born but I am sure Shane would disagree with that. I do believe that some of my OCD has been passed on to Madison. She can't stand for drawers, cabinets, or doors to be open. She feels that it is her duty to close them. When I am cooking I always leave them open for her. I think she feels like she is helping me out. After I cleaned the kitchen the other day I opened up several things in the kitchen and grabbed the video camera. It is just too cute watching her close them. She was sick when I recorded this so that is why you can hear her breathing.
This one is of Madison dancing in the car. She was starting to get fancy with the notepad! We have about 5 notepads around the house and one is with us at ALL times. For those of you wondering, I was not driving when I recorded this. We were stopped at a stop sign.
This is what Madison does ALL day long. I just wish I could understand what all she is saying. Sometime I can make it out but most of the time I just have no clue.
Wednesday night Madison started getting congested and first thing Thursday morning I called the pediatrician. After she examined her, she said that Madison had an ear infection that we are treating with oral antibiotics and ear drops. The ear is looking much better but Madison still has a lot of congestion and a horrible cough.
Friday we started doing breathing treatments every 4 hours and Madison started a nose spray to help with the congestion. Friday and all weekend she was running a fever. I called our Pulmonary doctor on Saturday and talked with him about what all we needed to do. We just stuck with the initial plan and tried to give it time to work. Monday she was getting worse so back to the doctor we go. We called Birmingham on Monday while at the pediatrician's office. Our pulmonary doctor didn't get the message until after 5:00.
Madison took a long nap on Monday afternoon and didn't wake up until 6:15. Once she was up she was coughing NON STOP. Finally, the pulmonary doctor called and he was able to hear Madison have one of her coughing spells. Since Madison had coughed so much she threw up. This is the second time she has ever done this and it scares us to death! We could tell though that once she got all the mucus out of her she was feeling a little bit better. The pulmonary doctor wanted us to start her on a high dose of steroids last night and another this morning. Then the dosage will slowly start going down over the next five days. Luckily, we always have extra for times like this. She is already starting to feel some what better.
It is very unusual for Madison to have a relapse this close together. If she has another one, we are going to go meet with an allergy doctor to see if that is what we are dealing with.
Other than that, things have been going good. We are taking full advantage of this warmer weather and having lots of play dates and getting out as much as possible. I can't believe we only have 3 months until Madison is in all winter!
Since we have kept Madison is all winter I have gotten spoiled by her staying so healthy. Before these past two colds, she hasn't been sick since last September. I had forgotten how bad they really are on her.
Dad started his chemo tablet two weeks ago. He has already lost close to 15 pounds in fluids. From what the doctors have told us that is a good sign that the chemo is working. Mom and Dad just went up to Birmingham today and he got a good report. They will go back in four weeks to have another PET scan and we just pray that the tumor has shrunk.
I couldn't end the blog without a few videos of Madison. I have taken so many that I want to post so I will HAVE to start updating more regularly. I hope you enjoy them.
Okay...so most of you that know me real well, know that I am borderline OCD when it comes to our house. I HAVE to clean the house at least once a week from top to bottom. It also has to be clean before we go to bed each night. I think I have gotten a little bit better since Madison was born but I am sure Shane would disagree with that. I do believe that some of my OCD has been passed on to Madison. She can't stand for drawers, cabinets, or doors to be open. She feels that it is her duty to close them. When I am cooking I always leave them open for her. I think she feels like she is helping me out. After I cleaned the kitchen the other day I opened up several things in the kitchen and grabbed the video camera. It is just too cute watching her close them. She was sick when I recorded this so that is why you can hear her breathing.
This one is of Madison dancing in the car. She was starting to get fancy with the notepad! We have about 5 notepads around the house and one is with us at ALL times. For those of you wondering, I was not driving when I recorded this. We were stopped at a stop sign.
This is what Madison does ALL day long. I just wish I could understand what all she is saying. Sometime I can make it out but most of the time I just have no clue.
Wednesday, June 22, 2011
These past few weeks have been CRAZY for us!! Amy, Paul, and Aubrey flew in on Tuesday, May 31. Paul had to fly back to Texas the very next day but came back on Monday, June 13. They all left Monday morning to fly back home. We are so happy that they came and that they were able to spend a lot of time with Mom and Dad.
The visit itself was pretty stressful. My days are so messed up so I will try to get this all straight. When Mom and Dad came home from the hospital stay in Birmingham we had to wait almost two weeks before we were able to get him in with an oncologist. The appointment was made for Tuesday, June 14. We didn't really get any answers after that visit but we knew dad would need to have a needle biopsy done on the spot on the liver as well as a PET scan to check for "hot spots" of cancer.
The PET scan was done on Friday at UAB and Mom and Dad came home on Friday night and then drove back on Sunday afternoon. Dad had to be admitted to the hospital and had the needle biopsy on Monday. They were able to get three samples off the mass to have tested. Since the results are going to take a few days, they came home yesterday afternoon and will go back next Tuesday to meet with the oncologist to get the results and discuss options.
Just a few days of Amy and Aubrey coming, Aubrey developed a horrible cough. We took her to Madison's pediatrician and she ended up having the croup. Since they were staying with us, we are all very nervous. As soon as Aubrey started to get better, Madison started showing similar signs. I took her to the pediatrician on Monday. Just a little cold for Madison ends up turning in to something horrible. Madison was at the pediatrician's office every day last week except for Tuesday.
The poor child could not stop coughing and had a ton of mucus. Her breathing was getting labored. She was having to get three xophenex treatments through the nebulizer 20 minutes apart to even make a difference with her cough. She received a rocephin shot on Thursday and had a chest x-ray done as well. The chest x-ray showed negative for pneumonia. We called B'ham and talked to her pulmonary doctor to see what he thought. We increased her steroids and extended them for another 5 days and put her on an antibiotics. She also got 2 more rocephin shots. One on Friday and on Saturday. She is finally starting to feel better. Yesterday was the first day she let out the laugh that I had come to miss so much. I knew then we were on the road to recovery.
It has been a rough few weeks for us but I am so thankful for all the prayers that have been lifted up for our family during this time. We have surely felt the presence of the Lord. This was the first time when Madison was sick that I was not a nervous wreck and sick to my stomach. I know that the good Lord is watching over us and he has everything in control.
I am sorry that I have not updated the blog in several weeks. I will try to get more regular now that we are able to get back in a routine. As soon as we know something on dad I will post that as well.
While Amy was visiting she was doing her quiet time and came across this verse that was very fitting to our situation with dad.
~Psalm 112:7
"He will have no fear of bad news; his heart is steadfast, trusting in the Lord."
For those of you who personally know my dad, you know how much of a Godly man he is. His faith has been so strong during this time. You also know how emotional our family is and what weepers we are! As Mom and Dad were getting ready to leave on Sunday we were all crying. (surprising I know) Dad immediately told us that we are not putting all our trust in to the Lord and we are letting fear overcome us. He is right. We as a family have laid all our fears at the Lord's feet and take such peace in knowing that.
I couldn't end this blog without a video of Madison. Amy taught her to do this and we got it on video. It is really short but oh so sweet!!
The visit itself was pretty stressful. My days are so messed up so I will try to get this all straight. When Mom and Dad came home from the hospital stay in Birmingham we had to wait almost two weeks before we were able to get him in with an oncologist. The appointment was made for Tuesday, June 14. We didn't really get any answers after that visit but we knew dad would need to have a needle biopsy done on the spot on the liver as well as a PET scan to check for "hot spots" of cancer.
The PET scan was done on Friday at UAB and Mom and Dad came home on Friday night and then drove back on Sunday afternoon. Dad had to be admitted to the hospital and had the needle biopsy on Monday. They were able to get three samples off the mass to have tested. Since the results are going to take a few days, they came home yesterday afternoon and will go back next Tuesday to meet with the oncologist to get the results and discuss options.
Just a few days of Amy and Aubrey coming, Aubrey developed a horrible cough. We took her to Madison's pediatrician and she ended up having the croup. Since they were staying with us, we are all very nervous. As soon as Aubrey started to get better, Madison started showing similar signs. I took her to the pediatrician on Monday. Just a little cold for Madison ends up turning in to something horrible. Madison was at the pediatrician's office every day last week except for Tuesday.
The poor child could not stop coughing and had a ton of mucus. Her breathing was getting labored. She was having to get three xophenex treatments through the nebulizer 20 minutes apart to even make a difference with her cough. She received a rocephin shot on Thursday and had a chest x-ray done as well. The chest x-ray showed negative for pneumonia. We called B'ham and talked to her pulmonary doctor to see what he thought. We increased her steroids and extended them for another 5 days and put her on an antibiotics. She also got 2 more rocephin shots. One on Friday and on Saturday. She is finally starting to feel better. Yesterday was the first day she let out the laugh that I had come to miss so much. I knew then we were on the road to recovery.
It has been a rough few weeks for us but I am so thankful for all the prayers that have been lifted up for our family during this time. We have surely felt the presence of the Lord. This was the first time when Madison was sick that I was not a nervous wreck and sick to my stomach. I know that the good Lord is watching over us and he has everything in control.
I am sorry that I have not updated the blog in several weeks. I will try to get more regular now that we are able to get back in a routine. As soon as we know something on dad I will post that as well.
While Amy was visiting she was doing her quiet time and came across this verse that was very fitting to our situation with dad.
~Psalm 112:7
"He will have no fear of bad news; his heart is steadfast, trusting in the Lord."
For those of you who personally know my dad, you know how much of a Godly man he is. His faith has been so strong during this time. You also know how emotional our family is and what weepers we are! As Mom and Dad were getting ready to leave on Sunday we were all crying. (surprising I know) Dad immediately told us that we are not putting all our trust in to the Lord and we are letting fear overcome us. He is right. We as a family have laid all our fears at the Lord's feet and take such peace in knowing that.
I couldn't end this blog without a video of Madison. Amy taught her to do this and we got it on video. It is really short but oh so sweet!!
Thursday, May 26, 2011
We have had a busy past few days. My dad was admitted to the hospital on Monday and was put in to ICU on Tuesday. Mom and Dad were in Dallas last week and came home on Tuesday. On Monday, he started feeling bad and by Tuesday, he was worse. First thing Wednesday morning he went to the doctor as he was retaining fluids and we didn't know why. By Wednesday, he had retained 21 pounds in fluid since the end of March.
They put dad on a diuretic to help him lose some of the fluid but it didn't help. By Sunday, he had only lost 3 pounds. He went to his doctor on Monday and they told him they needed to run some test but because they would need preauthorization from the insurance company, it would be faster for him to go through the emergency room.
The emergency room did a CT scan to see if dad had an intestinal blockage which came back negative, but did show a spot on his liver. The spot is about two and half inches long which they say is pretty big. They need to do a needle biopsy on it but because dad is on plavix for his heart, they have to take dad off of it for five days before they can do it.
Dad just had an echocardiogram done while we were in Birmingham. That test didn't show anything abnormal. Dr. Evans, dad's GI doctor, ordered another one to be done on Tuesday. That echocardiogram showed a blood clot in the right side of dad's heart, which is the reason he is in ICU. They now have him hooked up to a heparin drip to try to help dissolve the clot. At first we were told that the clot could be a tumor but now they are leaning back towards a clot. We just won't know for sure until the heparin has time to work and they are able to do another echocardiogram.
The plan is for dad to stay in ICU over the weekend. The are going to do the needle biopsy on Friday and because of the long weekend, we will more than likely not get the results until Tuesday. Depending on what the biopsy shows will depend on what is next.
We appreciate all your phone calls, emails and texts to check on dad, but most of all we appreciate all your prayers. We as a family have laid all of our worries at the feet of God for we know that it is in his control. Dad is being showered in prayers and we have definitely felt them. We are so thankful for Dr. Evans and how he felt the need to order another echocardiogram because there was really no need for him to do so since he had just had one 3 weeks ago. If he had not done that, the blood clot would not have been detected.
Mom is doing good. She is tired from being up at the hospital all day. We are sending all the results as we get them to UAB to see if that is where we need to transfer to if surgery needs to be done. It has been hard on Amy to be in Dallas and away from home. Amy might come if dad has to have surgery. As badly as I want to see the three of them I hope that is not the circumstance for the trip home.
Madison has been a trooper these past few days. I have had to leave her with friends which I think has been harder on me than it has on her. She and I have stayed up until about 11:00 these past few nights getting caught up on our snuggles. Last night she said "I love you" for the very first time to me. She has repeated it when I asked her to but she did it without me even telling her to. Talk about tears of joy!!!! I have waited three and half years to hear her say that and it just melted my heart.
~ 1 Peter 5:6-7
"Humble yourselves therefore under the mighty hand of God, that he may exalt you in due time. Casting all your care upon him for he careth for you."
I recorded this video last night as I was getting Madison ready for bed and putting her PJs on. It was 10:15 at this point and Madison still had the giggles. For some reason, she thinks it is HILARIOUS when you bump into something and say "ouch." I hope this video puts a smile on your face!
They put dad on a diuretic to help him lose some of the fluid but it didn't help. By Sunday, he had only lost 3 pounds. He went to his doctor on Monday and they told him they needed to run some test but because they would need preauthorization from the insurance company, it would be faster for him to go through the emergency room.
The emergency room did a CT scan to see if dad had an intestinal blockage which came back negative, but did show a spot on his liver. The spot is about two and half inches long which they say is pretty big. They need to do a needle biopsy on it but because dad is on plavix for his heart, they have to take dad off of it for five days before they can do it.
Dad just had an echocardiogram done while we were in Birmingham. That test didn't show anything abnormal. Dr. Evans, dad's GI doctor, ordered another one to be done on Tuesday. That echocardiogram showed a blood clot in the right side of dad's heart, which is the reason he is in ICU. They now have him hooked up to a heparin drip to try to help dissolve the clot. At first we were told that the clot could be a tumor but now they are leaning back towards a clot. We just won't know for sure until the heparin has time to work and they are able to do another echocardiogram.
The plan is for dad to stay in ICU over the weekend. The are going to do the needle biopsy on Friday and because of the long weekend, we will more than likely not get the results until Tuesday. Depending on what the biopsy shows will depend on what is next.
We appreciate all your phone calls, emails and texts to check on dad, but most of all we appreciate all your prayers. We as a family have laid all of our worries at the feet of God for we know that it is in his control. Dad is being showered in prayers and we have definitely felt them. We are so thankful for Dr. Evans and how he felt the need to order another echocardiogram because there was really no need for him to do so since he had just had one 3 weeks ago. If he had not done that, the blood clot would not have been detected.
Mom is doing good. She is tired from being up at the hospital all day. We are sending all the results as we get them to UAB to see if that is where we need to transfer to if surgery needs to be done. It has been hard on Amy to be in Dallas and away from home. Amy might come if dad has to have surgery. As badly as I want to see the three of them I hope that is not the circumstance for the trip home.
Madison has been a trooper these past few days. I have had to leave her with friends which I think has been harder on me than it has on her. She and I have stayed up until about 11:00 these past few nights getting caught up on our snuggles. Last night she said "I love you" for the very first time to me. She has repeated it when I asked her to but she did it without me even telling her to. Talk about tears of joy!!!! I have waited three and half years to hear her say that and it just melted my heart.
~ 1 Peter 5:6-7
"Humble yourselves therefore under the mighty hand of God, that he may exalt you in due time. Casting all your care upon him for he careth for you."
I recorded this video last night as I was getting Madison ready for bed and putting her PJs on. It was 10:15 at this point and Madison still had the giggles. For some reason, she thinks it is HILARIOUS when you bump into something and say "ouch." I hope this video puts a smile on your face!
Tuesday, May 17, 2011
Yes I know, it has been a long time since I posted, again! I can't get over how long it has taken us to recover from this trip. Madison slept longer for a good week. Almost 15 hours each night and about a four and half hour night each day. This week she is sleeping about 12 hours each night and about a two hour nap in the afternoons. That is her normal routine. I feel bad for my mom and dad. Mom was in Dallas for Aubrey's birth and flew in the day before we left. We got home on Thursday and mom and dad both flew back on Tuesday to help out with the new baby and they are flying back home tonight. I know that they are drained but also know that they are enjoying every minute that they get to spend with their grandchildren.
We haven't had much exciting going on around the Riley house. We had a wonderful Mother's day. We got up and went to church that morning. We have been visiting Hiland Park Baptist church for a few months now but we have been listening to the sermons at home most of the winter. Shane and I both felt in our hearts that this was the place we needed to be. We had been talking about joining but we just hadn't done it yet. After the sermon on Mother's Day we both knew it was time and went up during the invitation and joined the church. It couldn't have been a better Mother's Day. Of course, I didn't have my camera on me for Mother's Day so I called the church and asked them if they could send me the picture that was taken after the service for new members. This is the only picture I have from Mother's day but one that I will cherish. Of course, Shane isn't smiling. We all know how much he LOVES to have his picture taken!! Notice the sarcasmm.
Madison is going through this stage right now where she loves to wear sunglasses. I try to always put them on her when we go outside because her little eyes are so sensitive. She will NOT wear her sunglasses. She has to wear one of mine. I am surprised but she will keep them on. Well since I don't buy expensive sunglasses and just get mine at Target, her and I share sunglasses. She cracks me up because when we are in the car, I will give her a pair of mine and put another one of my own and we are constantly trading. I took these pictures of Madison just being silly putting two pair of sunglasses on at a time. She was really cracking herself up. I will try to get some new video of her this week and post on the blog as well.
We haven't had much exciting going on around the Riley house. We had a wonderful Mother's day. We got up and went to church that morning. We have been visiting Hiland Park Baptist church for a few months now but we have been listening to the sermons at home most of the winter. Shane and I both felt in our hearts that this was the place we needed to be. We had been talking about joining but we just hadn't done it yet. After the sermon on Mother's Day we both knew it was time and went up during the invitation and joined the church. It couldn't have been a better Mother's Day. Of course, I didn't have my camera on me for Mother's Day so I called the church and asked them if they could send me the picture that was taken after the service for new members. This is the only picture I have from Mother's day but one that I will cherish. Of course, Shane isn't smiling. We all know how much he LOVES to have his picture taken!! Notice the sarcasmm.
Madison is going through this stage right now where she loves to wear sunglasses. I try to always put them on her when we go outside because her little eyes are so sensitive. She will NOT wear her sunglasses. She has to wear one of mine. I am surprised but she will keep them on. Well since I don't buy expensive sunglasses and just get mine at Target, her and I share sunglasses. She cracks me up because when we are in the car, I will give her a pair of mine and put another one of my own and we are constantly trading. I took these pictures of Madison just being silly putting two pair of sunglasses on at a time. She was really cracking herself up. I will try to get some new video of her this week and post on the blog as well.
Wednesday, May 4, 2011
I am still smiling so big and praising the Lord for all of the good reports we have received this week. All of Madison's big appointments just happened to be today and all of them were great!
Genetics were the first this morning and they were so pleased with how well Madison was doing. I do believe they were in shock at how much she was talking and of course, Madison had to put on a show.
Our second appointment was with cardiology and nothing has changed from the last visit. He as well was please with Madison's overall health.
Our last appointment for the day was with pulmonary. They were so happy that Madison didn't have any colds this winter. We are still trying to decide if we should do another sleep study on Madison. The doctors want to make sure that Madison's Co2 are not elevated and to check that, we still have to do another sleep study. Of course, these are torture in my eyes for any child who has to go through one. Shane and I just have decide if we want to put Madison through it. Right now, she doesn't show any signs of those numbers being elevated but he wants to double check. Please pray that we make the right decision for Madison. If we do decide to do one, it will take place on her next six month check up.
Dad had his check up today with cardiology as well and he also got a good report.
We met another family tonight at the hotel who were victims of the tornado in Tuscaloosa. The lived in Pleasant Ridge, which was one of the hardest hit areas. She was home with all of her kids and two of their friends kids and they ALL survived. Her husband called her 2 minutes before it hit and told them to look out the window because he had heard that it was heading their way. As soon as they looked out the window they saw all kinds of debris flying in the air. They went down to the lower level of their house and put a mattress on top of them. They are still amazed that they made it through alive. The mother was telling us that they live in a pretty popular neighbor in a culdesac. Their house, along with one more in the culdesac where the only houses that were not leveled but they were the only ones on their street who made in through the storm.
I sat their in shock with tears in my eyes listening to their stories. This mom had 4 kids. One is a senior, one is in 9th grade, 6th grade, and 3rd grade. We listened to the 3 younger ones tell their story about the tornado. These kids still have such a look of shock and disbelief all over their face. As soon as they got through telling their story, I went and gave all the kids and their mom a hug. I can't even imagine going through what they have gone through.
We are actually leaving to come home first thing in the morning. Shane's grandmother's funeral is at 2:00 tomorrow afternoon in Geneva, AL. All we have is a dentist appointment so I am going to cancel that one and just take Madison to see our regular dentist on home. We aren't going to make it back in time for the funeral but mom and I are going to go down to the tire store and help them out.
Thank you for all the prayers that you lifted up this week for Madison for I know that is the real reason why we have gotten all the good reports. I love and appreciate you all more than you will ever know.
Note- please excuse on the grammer mistakes and misspelled words. Spell check isn't working for some reason and I don't have time to go back and reread what I wrote. I just hope it all makes sense! =)
Genetics were the first this morning and they were so pleased with how well Madison was doing. I do believe they were in shock at how much she was talking and of course, Madison had to put on a show.
Our second appointment was with cardiology and nothing has changed from the last visit. He as well was please with Madison's overall health.
Our last appointment for the day was with pulmonary. They were so happy that Madison didn't have any colds this winter. We are still trying to decide if we should do another sleep study on Madison. The doctors want to make sure that Madison's Co2 are not elevated and to check that, we still have to do another sleep study. Of course, these are torture in my eyes for any child who has to go through one. Shane and I just have decide if we want to put Madison through it. Right now, she doesn't show any signs of those numbers being elevated but he wants to double check. Please pray that we make the right decision for Madison. If we do decide to do one, it will take place on her next six month check up.
Dad had his check up today with cardiology as well and he also got a good report.
We met another family tonight at the hotel who were victims of the tornado in Tuscaloosa. The lived in Pleasant Ridge, which was one of the hardest hit areas. She was home with all of her kids and two of their friends kids and they ALL survived. Her husband called her 2 minutes before it hit and told them to look out the window because he had heard that it was heading their way. As soon as they looked out the window they saw all kinds of debris flying in the air. They went down to the lower level of their house and put a mattress on top of them. They are still amazed that they made it through alive. The mother was telling us that they live in a pretty popular neighbor in a culdesac. Their house, along with one more in the culdesac where the only houses that were not leveled but they were the only ones on their street who made in through the storm.
I sat their in shock with tears in my eyes listening to their stories. This mom had 4 kids. One is a senior, one is in 9th grade, 6th grade, and 3rd grade. We listened to the 3 younger ones tell their story about the tornado. These kids still have such a look of shock and disbelief all over their face. As soon as they got through telling their story, I went and gave all the kids and their mom a hug. I can't even imagine going through what they have gone through.
We are actually leaving to come home first thing in the morning. Shane's grandmother's funeral is at 2:00 tomorrow afternoon in Geneva, AL. All we have is a dentist appointment so I am going to cancel that one and just take Madison to see our regular dentist on home. We aren't going to make it back in time for the funeral but mom and I are going to go down to the tire store and help them out.
Thank you for all the prayers that you lifted up this week for Madison for I know that is the real reason why we have gotten all the good reports. I love and appreciate you all more than you will ever know.
Note- please excuse on the grammer mistakes and misspelled words. Spell check isn't working for some reason and I don't have time to go back and reread what I wrote. I just hope it all makes sense! =)
Tuesday, May 3, 2011
Well today we saw the nutritionist and the orthopedic doctor. We were pleased with both appointments. The nutritionist wants Madison to get more fluids down during the day. Right now we are averaging about 12 ounces a day and she wants us to work up to 20 ounces slowly. Madison weighs 20 pounds and she made 24 her target weight to where she thinks she needs to be. Of course, this isn't going to happen overnight and probably won't happen within the next year. However, that is a long term goal that we are going to work towards.
The orthopedic appointment went well also. Right away they wanted to do xrays and I asked if we could see the doctor first and then decide if we need to do xrays. When they xray Madison, it is so painful for her because of how they have to stretch her out and position her to get them done properly. The doctor waited on them and then after examining Madison he decided not to put her through it. Thank goodness!! His resoning for that was if they did find something, would we really do surgery to fix it? The answer is no. Shane and I have been pretty adament that we will only put Madison under anesthesia if it is absolutely necessary. He also said that he would recommend that we stop physical and occupational therapies. These therapies have gotten painful for Madison and I have been working with Madison this winter while she stayed inside. He said that we could just continue with that.
Overall another good day. Tomorrow is our busy day with genetic, cardiology and pulmonary. Normally I am a nervous wreck before our cardiology appointment but I have such a peace about all these appointments. On Thursday all we have is a dentist appointment.
Shane called me this afternoon and told me that his grandmother passed away this afternoon. She was admitted to the hospital yesterday and they were told she probably would only live just a few days. She had been in a nursing home in Bonifay for several years battling Alzheimer's disease and had stopped eating 3 days ago. I am going to talk to our genetic doctor tomorrow and we might end up canceling the dentist appointment and head on home. Just depends. I personally think the dentisit appointment is a joke because Madison does not cooperate AT ALL! All they do is a fluoride treatment.
I am ready to be back in sunny and hot Panama City. It has rained here all day and it is freezing!!! Okay, I am exaggerating a little bit but it is in the low 50s and in the morning it is going to be in the low 40s! I did not pack for cold weather. I did pack Madison some long shirts and sweat pants but I didn't bring any jackets. We had to make a run to Old Navy this afternoon to get Madison some warm clothes. We will find any reason to go shopping!!
The orthopedic appointment went well also. Right away they wanted to do xrays and I asked if we could see the doctor first and then decide if we need to do xrays. When they xray Madison, it is so painful for her because of how they have to stretch her out and position her to get them done properly. The doctor waited on them and then after examining Madison he decided not to put her through it. Thank goodness!! His resoning for that was if they did find something, would we really do surgery to fix it? The answer is no. Shane and I have been pretty adament that we will only put Madison under anesthesia if it is absolutely necessary. He also said that he would recommend that we stop physical and occupational therapies. These therapies have gotten painful for Madison and I have been working with Madison this winter while she stayed inside. He said that we could just continue with that.
Overall another good day. Tomorrow is our busy day with genetic, cardiology and pulmonary. Normally I am a nervous wreck before our cardiology appointment but I have such a peace about all these appointments. On Thursday all we have is a dentist appointment.
Shane called me this afternoon and told me that his grandmother passed away this afternoon. She was admitted to the hospital yesterday and they were told she probably would only live just a few days. She had been in a nursing home in Bonifay for several years battling Alzheimer's disease and had stopped eating 3 days ago. I am going to talk to our genetic doctor tomorrow and we might end up canceling the dentist appointment and head on home. Just depends. I personally think the dentisit appointment is a joke because Madison does not cooperate AT ALL! All they do is a fluoride treatment.
I am ready to be back in sunny and hot Panama City. It has rained here all day and it is freezing!!! Okay, I am exaggerating a little bit but it is in the low 50s and in the morning it is going to be in the low 40s! I did not pack for cold weather. I did pack Madison some long shirts and sweat pants but I didn't bring any jackets. We had to make a run to Old Navy this afternoon to get Madison some warm clothes. We will find any reason to go shopping!!
Monday, May 2, 2011
We made it to Birmingham last night around 5:00. I was very worried about whether or not we were going to have a room due to the tornadoes in Tuscaloosa on Wednesday. We were guaranteed a room because I had made reservations six months ago but because the hotel has a smoking floor and they were at capacity, they couldn't promise us that we wouldn't be on the smoking floor. Since Madison is on oxygen that wouldn't work. To make a long story short, we did get a room and we are NOT on the smoking floor!
We always get to know people at the hotel while we are here since we stay for several days at a time. We have gotten to know several families who have made this hotel their home for the next 30 days. We have also gotten to know a lot of volunteers who are here to help. It is so heart warming to see how everyone has come together to help others out, strangers at that.
After Madison's appointment this morning (which I will get to soon) we decided to take a ride to Tuscaloosa and see some of the damage. We really didn't think we would get to see a lot since the police have closed off a lot of the area that was hit hard. As we started approaching where the tornado hit we some a lot of trees and signs down. When we got the area where the tornado hit we couldn't believe it. We all got silent and just stared in shock. I can't even put in to words how bad that damage is. That tornado was so wide we couldn't even see where the end of it was. We turned down a road and started taking the path of the tornado and I still just can't even explain it. I did take some pictures but the pictures don't even do it justice. I can't even imagine what these people went through on Wednesday night and what they are going through now.
I took some of them with my cell phone so they are a little blurry.
Now back to Madison's appointment. We saw a neurosurgeon today. I knew when this appointment was scheduled by our genetic doctor that I should question why we were seeing a neurosurgeon and not a neurologist. I knew today that I should have gone with my gut because today was pretty much a wasted appointment. He didn't tell us anything that we didn't already know and he questioned as well why we were referred to him and not a neurologist. I know now that I should always go with my gut and not second guess myself. The good news is that he did go over discs from previous MRIs and examined her and didn't see any need for us to continue to see him. We will see our genetic doctor on Wednesday and talk to her about it and see if there was a mistake made when they scheduled the appointment.
Tomorrow we will be seeing the nutritionist and the orthopedic doctors. Wednesday is our busy day with genetic, cardiology and pulmonary.
Thank you for keeping Madison and our family in your prayers. We appreciate you all more than you know. Please keep all the people that were hit by the tornado in your prayers as well. After hearing the news that Osama Bin Laden was killed last night and seeing so many people helping one another up here, it sure makes my proud to be an American!!
We always get to know people at the hotel while we are here since we stay for several days at a time. We have gotten to know several families who have made this hotel their home for the next 30 days. We have also gotten to know a lot of volunteers who are here to help. It is so heart warming to see how everyone has come together to help others out, strangers at that.
After Madison's appointment this morning (which I will get to soon) we decided to take a ride to Tuscaloosa and see some of the damage. We really didn't think we would get to see a lot since the police have closed off a lot of the area that was hit hard. As we started approaching where the tornado hit we some a lot of trees and signs down. When we got the area where the tornado hit we couldn't believe it. We all got silent and just stared in shock. I can't even put in to words how bad that damage is. That tornado was so wide we couldn't even see where the end of it was. We turned down a road and started taking the path of the tornado and I still just can't even explain it. I did take some pictures but the pictures don't even do it justice. I can't even imagine what these people went through on Wednesday night and what they are going through now.
I took some of them with my cell phone so they are a little blurry.
Now back to Madison's appointment. We saw a neurosurgeon today. I knew when this appointment was scheduled by our genetic doctor that I should question why we were seeing a neurosurgeon and not a neurologist. I knew today that I should have gone with my gut because today was pretty much a wasted appointment. He didn't tell us anything that we didn't already know and he questioned as well why we were referred to him and not a neurologist. I know now that I should always go with my gut and not second guess myself. The good news is that he did go over discs from previous MRIs and examined her and didn't see any need for us to continue to see him. We will see our genetic doctor on Wednesday and talk to her about it and see if there was a mistake made when they scheduled the appointment.
Tomorrow we will be seeing the nutritionist and the orthopedic doctors. Wednesday is our busy day with genetic, cardiology and pulmonary.
Thank you for keeping Madison and our family in your prayers. We appreciate you all more than you know. Please keep all the people that were hit by the tornado in your prayers as well. After hearing the news that Osama Bin Laden was killed last night and seeing so many people helping one another up here, it sure makes my proud to be an American!!
Hobby Lobby hit by tornado
The Tide truck helping people was their clothes.
Saturday, April 30, 2011
We are so proud to annouce that Amy and Paul welcomed their sweet baby in to the world on Wednesday night. As some of you may or may not know, they were not finding out what they were having. I was so happy to hear that it was a beautiful baby girl, who they named Aubrey Renee. I would have been happy with either one, but I am partial with little girls. =)
Since Amy had to have a c-section, and Aubrey wasn't born until after 7:00 on Saturday night, we only got to get a few pictures of her. Thursday afternoon we were able to Skype with them at the hospital in Dallas and Madison got to meet her new little cousin. I recorded the meeting and it is PRECIOUS!!!! It will be posted below.
We are leaving in the morning at 10:00 to go to Birmingham for Madison's 6 month check up. I can honestly say that this is the first time that I have not been anxious and sick over these appointments. I was earlier in the week but I knew I could not keep stressing about this. I have laid all my worries and anxieties at the Lord's feet. This situation is out of my control and in his. Please keep our sweet Madison in your prayers this week. I do promise that I will update every night and give the updates of that day's appointments. Our last appointment is Thursday morning at 10:00 and we will be coming home after that.
Thank you for caring for Madison and wanting to share this journey with us.
Love to you all!
Since Amy had to have a c-section, and Aubrey wasn't born until after 7:00 on Saturday night, we only got to get a few pictures of her. Thursday afternoon we were able to Skype with them at the hospital in Dallas and Madison got to meet her new little cousin. I recorded the meeting and it is PRECIOUS!!!! It will be posted below.
We are leaving in the morning at 10:00 to go to Birmingham for Madison's 6 month check up. I can honestly say that this is the first time that I have not been anxious and sick over these appointments. I was earlier in the week but I knew I could not keep stressing about this. I have laid all my worries and anxieties at the Lord's feet. This situation is out of my control and in his. Please keep our sweet Madison in your prayers this week. I do promise that I will update every night and give the updates of that day's appointments. Our last appointment is Thursday morning at 10:00 and we will be coming home after that.
Thank you for caring for Madison and wanting to share this journey with us.
Love to you all!
Monday, April 25, 2011
Yes, I know. It has been a long time since I last posted. We have been pretty busy and not much exciting things going on so I felt like I haven't had too much to say. We are leaving next Sunday to go to Birmingham for Madison's 6 month check ups. The plan is to come home on Thursday after her last appointment that morning. However, if any of the doctors want to run any type of tests on her we will have Thursday afternoon and Friday to do that. I really don't think they will though but I have left that open just in case. I will post every day next week so everyone can get the updates from the appointments.
We had a busy but wonderful Easter weekend. We went to Dothan for the annual Ethridge reunion. We left at 8:30 Saturday morning and got home around 5:00 that afternoon. Madison was worn out to say the least. Sunday we got up early to go to the 8:00 service at church which meant we were running around like crazy trying to get there on time. We did get there on time but I didn't get a single picture of Madison in her Easter dress. I was so bummed out. Madison was so sleepy when we got home I didn't want to make her take any pictures. I am going to recreate it today and take pictures.
I have several pictures and a video that I am going to post. The video is of my grandmother (Madison's great-grandmother) rocking her Saturday after the reunion and singing Jesus Loves Me to her. You will probably have to turn your volume up because when I recorded it, I was in the kitchen and it didn't pick up the sound that good.
I will try to post more this week. My list of things to get done this week is growing every day. We have to take so much stuff when we go and I am already starting to pack. We are anxiously awaiting the arrival of my little niece or nephew. Amy's due date was last Sunday and she is going to the doctor this morning. Please keep Amy and Paul and baby Cristina in your prayers.
I hope you enjoy the pictures and the video. Love to you all! =)
We had a busy but wonderful Easter weekend. We went to Dothan for the annual Ethridge reunion. We left at 8:30 Saturday morning and got home around 5:00 that afternoon. Madison was worn out to say the least. Sunday we got up early to go to the 8:00 service at church which meant we were running around like crazy trying to get there on time. We did get there on time but I didn't get a single picture of Madison in her Easter dress. I was so bummed out. Madison was so sleepy when we got home I didn't want to make her take any pictures. I am going to recreate it today and take pictures.
I have several pictures and a video that I am going to post. The video is of my grandmother (Madison's great-grandmother) rocking her Saturday after the reunion and singing Jesus Loves Me to her. You will probably have to turn your volume up because when I recorded it, I was in the kitchen and it didn't pick up the sound that good.
I will try to post more this week. My list of things to get done this week is growing every day. We have to take so much stuff when we go and I am already starting to pack. We are anxiously awaiting the arrival of my little niece or nephew. Amy's due date was last Sunday and she is going to the doctor this morning. Please keep Amy and Paul and baby Cristina in your prayers.
I hope you enjoy the pictures and the video. Love to you all! =)
Madison shopping in style!
Madison patiently waiting for Daddy to get home.
Cousins Scarlett and her daughter Brooklyn and Madison and I.
4 generations
Cousin Ronald showing Madison an Easter egg.
Madison sleeping good after a long day fellowship.
Big Mama rocking and singing to Madison.
Thursday, April 7, 2011
I have been wanting to post this video since Tuesday but I am just now getting around to it. Madison has been going full throttle and I am so thankful for it. She has been sleeping in until about 10:30 every morning. When she is up, she does not slow down. I get the biggest laugh because we have the same conversation about 300 times a day! Maybe a little exaggerated but it is a lot. She will tell me hey and then go down the list of all the names she knows and I have to tell her where every one is at and then we repeat it.
We call my grandmother Big Mama. We have been working with Madison to say it for awhile now and she has finally got it. She says, "Me Mama." When she says it, it sounds like she is saying "mean mama." We will just stick to what we hope it is and that is her way of saying Big Mama. =)
Now to the video. A few years ago, Paul's mom Jackie gave Madison this leap frog dog named Scout. She played with this dog for about a month straight and then moved on. She has days where she still plays with it non stop. Well, Scout has been the top pick for her toy this week. Monday, Madison would be playing with Scout and then Scout would disappear. Madison can say Scout (that's the name of Amy and Paul's dog too) so she would tell me that is what she wanted. Madison will always show me where she dropped a toy at for me to pick up. Well this time Madison went into the bathroom which isn't unusual but she stopped at the bath tub and I realized Scout was in there. I asked her why Scout was in the tub and she would say, "Bubbles?" Apparently, Madison thought Scout needed a bubble bath.
I couldn't catch her on video putting Scout in the tub. I did video tape her putting Scout in the tub after I asked if he needed a bath. Still a cute video. I hope you enjoy! =)
We call my grandmother Big Mama. We have been working with Madison to say it for awhile now and she has finally got it. She says, "Me Mama." When she says it, it sounds like she is saying "mean mama." We will just stick to what we hope it is and that is her way of saying Big Mama. =)
Now to the video. A few years ago, Paul's mom Jackie gave Madison this leap frog dog named Scout. She played with this dog for about a month straight and then moved on. She has days where she still plays with it non stop. Well, Scout has been the top pick for her toy this week. Monday, Madison would be playing with Scout and then Scout would disappear. Madison can say Scout (that's the name of Amy and Paul's dog too) so she would tell me that is what she wanted. Madison will always show me where she dropped a toy at for me to pick up. Well this time Madison went into the bathroom which isn't unusual but she stopped at the bath tub and I realized Scout was in there. I asked her why Scout was in the tub and she would say, "Bubbles?" Apparently, Madison thought Scout needed a bubble bath.
I couldn't catch her on video putting Scout in the tub. I did video tape her putting Scout in the tub after I asked if he needed a bath. Still a cute video. I hope you enjoy! =)
Monday, April 4, 2011
I can't believe it has been almost a week since I last posted. I got a phone call Saturday morning from my friend Kellie Moore. Kellie and her husband, Brad, live in Nashville and they had a daughter named Rylee, who was also born with the same disease as Madison. Rylee passed away in 2009 at the age of 8. Kellie and I have become such a great friends and talk on a weekly basis. She called to tell me that a little boy with I-Cell Disease, Ethan from Minnesota, passed away that morning. He was only 3 months younger than Madison.
My heart was breaking. Shane had gone into work on Saturday and Madison was still asleep. To say I cried my eyes out is an understatement. After sobbing for a good 20 to 30 minutes, and Madison still being asleep, I knew the only way I was going to get peace out of this situation was to go to God in prayer. It is amazing was a great quiet time can do for you.
If I did not have my faith, I would live every day that we have with Madison in complete fear. Don't get me wrong, there are days where I let that fear slip in. I have to remind myself that this is the Lord's will for Madison and he would not want me to have fear but rather complete faith. We have to live each day we have with Madison to the fullest and give her the best life possible. That would not be able to happen if I let fear run my life.
We sang a song Sunday night at church that really moved me. It has always been one of favorites. The words just spoke so loudly to me.
I need Thee every hour, most gracious Lord;
No tender voice like Thine can peace afford.
I need Thee every hour, stay Thou nearby;
Temptations lose their pow’r when Thou art nigh.
I need Thee every hour, in joy or pain;
Come quickly and abide, or life is vain.
I need Thee every hour; teach me Thy will;
And Thy rich promises in me fulfill.
I need Thee every hour, most Holy One;
Oh, make me Thine indeed, Thou blessed Son.
My heart was breaking. Shane had gone into work on Saturday and Madison was still asleep. To say I cried my eyes out is an understatement. After sobbing for a good 20 to 30 minutes, and Madison still being asleep, I knew the only way I was going to get peace out of this situation was to go to God in prayer. It is amazing was a great quiet time can do for you.
If I did not have my faith, I would live every day that we have with Madison in complete fear. Don't get me wrong, there are days where I let that fear slip in. I have to remind myself that this is the Lord's will for Madison and he would not want me to have fear but rather complete faith. We have to live each day we have with Madison to the fullest and give her the best life possible. That would not be able to happen if I let fear run my life.
We sang a song Sunday night at church that really moved me. It has always been one of favorites. The words just spoke so loudly to me.
I need Thee every hour, most gracious Lord;
No tender voice like Thine can peace afford.
I need Thee every hour, stay Thou nearby;
Temptations lose their pow’r when Thou art nigh.
I need Thee every hour, in joy or pain;
Come quickly and abide, or life is vain.
I need Thee every hour; teach me Thy will;
And Thy rich promises in me fulfill.
I need Thee every hour, most Holy One;
Oh, make me Thine indeed, Thou blessed Son.
Refrain:
I need Thee, oh, I need Thee;
Every hour I need Thee;
Oh, bless me now, my Savior,
I come to Thee.
I need Thee, oh, I need Thee;
Every hour I need Thee;
Oh, bless me now, my Savior,
I come to Thee.
I lean on God every day to help me be the best mom that I can be to Madison, both physically and spiritually. I am fully aware of the outcome of the disease that Madison has. When you really think about it, we are all "terminal." We might not pass away from a disease that is terminal but we will all pass away some day. God knows the begining and the end for each and every one us. I am so glad that Jesus lives in my heart and that he is there for me every hour that I call on him.
I don't want people to feel sorry for us when they hear about Madison. I know who holds tomorrow and for that I put all my faith in the Lord.
Thank you for keeping up with our precious Madison. Please continue to pray not only for Madison but all the other children who are battling this disease. Also, please keep Ethan's family in your prayers, Scott and Tara Finne, and his little sister Emma.
Hug your loved ones a little tighter today and tell them you love them a little more often.
~Romans 8: 38-39
"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."
"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."
Tuesday, March 29, 2011
Madison has been the quite the comedian these past few days. That is really nothing new. Her personality just seems to come out more and more each day. Yesterday she didn't stop talking from the time she woke up until the time she took a nap and went to bed! It seems to be a lot of the same conversation, but I just can't seem to get enough of it. She is always saying, "Hey Mama!" Then she will ask about Dada, Mimi, Baba, and Paul. Still not much on Amy but it is a work in progress.
Last night at dinner she had us laughing so hard I was crying. We sat down to eat and Shane and I were carrying on a conversation as I was feeding Madison and not really paying her much attention. Wrong and sad...I know. I looked over at Madison and she is pretending that she is eating her yogurt and as soon as she would pretend to put it in her mouth she would go "hhhmmmm!" When she realized we were watching her and laughing she knew then it was time to put on a show! When I got the video camera out she didn't get AS dramatic but still very cute.
Also last night at dinner, we prayed right before we ate like we always do. Well, Madison was almost finished eating and she stops and says "Amen!" and bows her head. We told her that we had already prayed and she continued to do this several times. Well at least until the video recorder came out!
Madison was wide awake this morning at 6:00. She was asking for a bottle so I went ahead and prepared one and gave it to her. I put her back in our bed at about 6:45 and she fell right back to sleep and slept until 9:00. She was not 100% when she got up. I could tell that getting up early like she did really threw her for a loop. After getting a very good nap I could tell she was back to her normal self.
The reason I could tell this was because she was laughing and talking nonstop again. I put her in her crib and she drank her bottle while I folded clothes. She finished her bottle and I was almost done folding clothes. When I finished putting the clothes up I went and picked her up to go and change her diaper. As I picked her up 3 pappies (pacifiers) fell out of her shorts onto the floor! I heard them fall and hit the carpet and Madison looked at me and just busted out laughing.
Okay...last story and then I am done. Yesterday I bumped into a drawer in the kitchen and Madison thought that was the funniest thing. Well today I hit my knee on the cabinet and Madison started laughing again. I pulled the video camera out to see if Madison would do it again and she did. I would act like I hit my elbow on the cabinet and Madison would laugh SO HARD. I hope you enjoy the video as much as we do!
Last night at dinner she had us laughing so hard I was crying. We sat down to eat and Shane and I were carrying on a conversation as I was feeding Madison and not really paying her much attention. Wrong and sad...I know. I looked over at Madison and she is pretending that she is eating her yogurt and as soon as she would pretend to put it in her mouth she would go "hhhmmmm!" When she realized we were watching her and laughing she knew then it was time to put on a show! When I got the video camera out she didn't get AS dramatic but still very cute.
Also last night at dinner, we prayed right before we ate like we always do. Well, Madison was almost finished eating and she stops and says "Amen!" and bows her head. We told her that we had already prayed and she continued to do this several times. Well at least until the video recorder came out!
Madison was wide awake this morning at 6:00. She was asking for a bottle so I went ahead and prepared one and gave it to her. I put her back in our bed at about 6:45 and she fell right back to sleep and slept until 9:00. She was not 100% when she got up. I could tell that getting up early like she did really threw her for a loop. After getting a very good nap I could tell she was back to her normal self.
The reason I could tell this was because she was laughing and talking nonstop again. I put her in her crib and she drank her bottle while I folded clothes. She finished her bottle and I was almost done folding clothes. When I finished putting the clothes up I went and picked her up to go and change her diaper. As I picked her up 3 pappies (pacifiers) fell out of her shorts onto the floor! I heard them fall and hit the carpet and Madison looked at me and just busted out laughing.
Okay...last story and then I am done. Yesterday I bumped into a drawer in the kitchen and Madison thought that was the funniest thing. Well today I hit my knee on the cabinet and Madison started laughing again. I pulled the video camera out to see if Madison would do it again and she did. I would act like I hit my elbow on the cabinet and Madison would laugh SO HARD. I hope you enjoy the video as much as we do!
This video isn't as funny as the first but still pretty cute. This is the one I took at dinner last night.
Monday, March 28, 2011
Another weekend has come and gone. We are sad to see it go. This is the first weekend Shane hasn't had to go in for most of the day on Saturday in a really long time. We took full advantage of it and spent the weekend together making wonderful memories with Madison. We took her outside Saturday while Shane did some yard work and saying she had a blast is an understatement. She cried when we had to come in but the mosquitoes we starting to get really bad.
Madison got to spend some time with mom and dad this weekend as well. They went to dinner with us Saturday night and church with us on Sunday night. When I have a chance, I am going to get on video what Madison does when we are all in the car together. That being Shane and I along with Mom and Dad. It is nonstop "Hey Mama!", "Hey Dada!", "Hey Mimi!", "Hey Baba!"
I took this video Saturday night after I got Madison out of the tub and dressed before we went out to dinner. I was telling her that we were going to eat with Mimi and Baba and this is the conversation that followed. Just to let you know, when Madison is ready to eat she let's us know by saying "Amen." Same goes for when we tell her we are going to out to eat.
Madison got to spend some time with mom and dad this weekend as well. They went to dinner with us Saturday night and church with us on Sunday night. When I have a chance, I am going to get on video what Madison does when we are all in the car together. That being Shane and I along with Mom and Dad. It is nonstop "Hey Mama!", "Hey Dada!", "Hey Mimi!", "Hey Baba!"
I took this video Saturday night after I got Madison out of the tub and dressed before we went out to dinner. I was telling her that we were going to eat with Mimi and Baba and this is the conversation that followed. Just to let you know, when Madison is ready to eat she let's us know by saying "Amen." Same goes for when we tell her we are going to out to eat.
Thursday, March 24, 2011
Today was one of those days where I wish I had the video camera rolling nonstop. Madison has talked literally ALL day! Thursday means cleaning day at the Riley house. Every Thursday I do my weekly clean and normally Madison is right behind me with an old dish rag doing whatever I do. Today I cleaned most of the house before she woke up so she didn't get to help like she normally does but I did finish faster than usual.
I have to tell you about the CUTEST thing Madison did today. I have called everyone to tell them. Every time we eat we always bless the food before. I say this generic children's prayer and Madison knows right when it is over because she always says "Amen." Well yesterday I quit saying the same old prayer and actually said a grown-up prayer. I blessed the food and then I asked for God's protection over Shane at work. Well instead of saying Shane I said daddy. Madison was sitting in her high chair with her head bowed and before I get another word out Madison says, "And Mimi." So we prayed for Mimi. Then Madison say, "And Papa." So of course we prayed for Papa. Then she says, "And Paul." Right after she said that I said, "And who else?" She immediately replied, "Amy!" She didn't mention the baby, but I did, so we prayed for the baby too. It was absolutely the sweetest thing!
Well, tonight at dinner, as I said our prayer, Madison didn't say anything when I mentioned Daddy, Mimi, Papa, Paul or Amy. As I was finishing up the prayer, I asked for Jesus to place his healing hands over Madison and to heal her of this disease. I wasn't quite finished but before I could go on, Madison says, "Amen!" It wasn't her normal 'Amen.' It was like she was shouting it. I couldn't help but laugh and cry all at the same time!
I hate I didn't get these two precious moments on video, but they are memories I will carry for the rest of my life.
I have to tell you about the CUTEST thing Madison did today. I have called everyone to tell them. Every time we eat we always bless the food before. I say this generic children's prayer and Madison knows right when it is over because she always says "Amen." Well yesterday I quit saying the same old prayer and actually said a grown-up prayer. I blessed the food and then I asked for God's protection over Shane at work. Well instead of saying Shane I said daddy. Madison was sitting in her high chair with her head bowed and before I get another word out Madison says, "And Mimi." So we prayed for Mimi. Then Madison say, "And Papa." So of course we prayed for Papa. Then she says, "And Paul." Right after she said that I said, "And who else?" She immediately replied, "Amy!" She didn't mention the baby, but I did, so we prayed for the baby too. It was absolutely the sweetest thing!
Well, tonight at dinner, as I said our prayer, Madison didn't say anything when I mentioned Daddy, Mimi, Papa, Paul or Amy. As I was finishing up the prayer, I asked for Jesus to place his healing hands over Madison and to heal her of this disease. I wasn't quite finished but before I could go on, Madison says, "Amen!" It wasn't her normal 'Amen.' It was like she was shouting it. I couldn't help but laugh and cry all at the same time!
I hate I didn't get these two precious moments on video, but they are memories I will carry for the rest of my life.
Wednesday, March 23, 2011
We have been crazy busy since last Friday! Madison ran errands with me on Friday. Saturday we went to Dothan to see my grandmother and spent the day there. I had to wake Madison up at 6:30 and she didn't take a nap the entire time we were at my grandmother's house. We left around 4:30 that afternoon and we weren't even out of her driveway and Madison was out! She got some much needed sleep the entire way home. Sunday she had to get up early again so we could go to church. This was the first time Madison has gone to church since October. She had a really good time and so did we. That afternoon we all took a nap and Madison slept 4 hours. I can tell that this weekend has taken a toll on her because she is sleeping a lot since we have been back.
This week I wanted her to take it easy so we have stayed in for the most part and she has caught up on her rest. She did get to have a play date with her good friend Madeline, which she enjoyed. Madison is still going through this clingy stage. I wouldn't say she is as clingy where I have to be holding her all the time but, she does always have to have my undivided attention or she gets a little mad! We are enjoying this warmer weather and I want to go and do so much with her but it is something that we can not rush. I have to remind myself of that. My parents told me today that strep throat is going around real bad and that makes me nervous. We are going to take baby steps getting her out more. Summer will be here before we know it and we can enjoy it then.
Here is picture of Madison in Dothan with my mom, our Cousin Jan, and Jan's little granddaughter, Brooklyn. We were so happy that we got to see our cousin Scarlett (who I haven't seen since our wedding) and meet her daughter Brooklyn. A good time was had by all!
This week I wanted her to take it easy so we have stayed in for the most part and she has caught up on her rest. She did get to have a play date with her good friend Madeline, which she enjoyed. Madison is still going through this clingy stage. I wouldn't say she is as clingy where I have to be holding her all the time but, she does always have to have my undivided attention or she gets a little mad! We are enjoying this warmer weather and I want to go and do so much with her but it is something that we can not rush. I have to remind myself of that. My parents told me today that strep throat is going around real bad and that makes me nervous. We are going to take baby steps getting her out more. Summer will be here before we know it and we can enjoy it then.
Here is picture of Madison in Dothan with my mom, our Cousin Jan, and Jan's little granddaughter, Brooklyn. We were so happy that we got to see our cousin Scarlett (who I haven't seen since our wedding) and meet her daughter Brooklyn. A good time was had by all!
Thursday, March 17, 2011
While Madison is down for her afternoon nap I have a few minutes to update the blog. I noticed on Monday that Madison wasn't really herself. She didn't want to be in her walker very much, which is VERY unusual. She either wanted to be in the chair on the counter or wanted me to hold her. I didn't think too much about it until Tuesday when she was doing the same thing. By that afternoon I called our pediatrician and set up an appointment for her to examine her on Wednesday morning.
I was hoping and praying that I was overreacting and that it was all due to the time change. Since her cardiologists told us that fatigue is a sign that the leak in her heart might have worsened, I didn't want to assume anything and wanted to be 100 percent sure it wasn't her heart. I hooked her up to the pulseox monitor to check her oxygen levels Tuesday night. Shane and I sat there and stared at that thing for two hours. It was all over the place. No consistency what so ever. Below 89 is bad. She mainly stayed in the low 90s and then would drop to the high 70s, back to the 80s and 90s, and so forth.
Long story short, we took her to our friends Matt and Summer's house Tuesday night at 8:30 so he could listen to her heart with his stethoscope and he didn't hear anything. We felt good about that. We still took her to the pediatrician on Wednesday and she also didn't hear anything either. After all that stress and worry, we are going to get us a stethoscope and I am going to have our cardiologist show me what I need to do so I can listen at home. We believe her oxygen levels were all over the place because the pulseox wasn't able to get an accurate reading.
Needless to say, it sounds like it is the time change that made her so fatigued. After catching up on her sleep she is getting back to her happy self!
I was hoping and praying that I was overreacting and that it was all due to the time change. Since her cardiologists told us that fatigue is a sign that the leak in her heart might have worsened, I didn't want to assume anything and wanted to be 100 percent sure it wasn't her heart. I hooked her up to the pulseox monitor to check her oxygen levels Tuesday night. Shane and I sat there and stared at that thing for two hours. It was all over the place. No consistency what so ever. Below 89 is bad. She mainly stayed in the low 90s and then would drop to the high 70s, back to the 80s and 90s, and so forth.
Long story short, we took her to our friends Matt and Summer's house Tuesday night at 8:30 so he could listen to her heart with his stethoscope and he didn't hear anything. We felt good about that. We still took her to the pediatrician on Wednesday and she also didn't hear anything either. After all that stress and worry, we are going to get us a stethoscope and I am going to have our cardiologist show me what I need to do so I can listen at home. We believe her oxygen levels were all over the place because the pulseox wasn't able to get an accurate reading.
Needless to say, it sounds like it is the time change that made her so fatigued. After catching up on her sleep she is getting back to her happy self!
Monday, March 14, 2011
The video I am going to post I thought was just too cute not to share. Every time I am on the phone, Madison will ALWAYS ask if it is Paul. Every time! Randomly, through out the day she will just say, "Paul." Followed by us saying, "No, Paul is in Texas." I can't tell you how many times in a day we have this conversation. We are trying to work with Madison on saying Paul, Amy and baby. The video shows the progress we are making. Obviously, we still have a lot of work to do!! =)
Sunday, March 13, 2011
Since Shane is playing with Madison I have a little bit of time to update the blog. I haven't had much of that lately, but I am not complaining at all. Madison has been going full blast from the moment she is up to the time she goes down for a nap or to bed. She is talking nonstop and I just can't seem to get enough of it.
We have had a pretty busy weekend. As the weather is starting to get warmer we are slowly starting to get Madison out some. I took her Friday to get her haircut and she looks oh so cute! The hair was literally getting out of control. I cut it about 2 weeks ago and it looked horrible. Her bangs were getting in her eyes and since she can't lift her arms up, she couldn't move them herself. I just cut the bangs and apparently added layers. Now the hair is back to looking good again, thanks to Kim Guynn!
Mom had outpatient surgery on Friday and we didn't know how invasive it was going to be. Madison and I had planned on staying at their house most of the day helping them out. Dad brought mom home around 11:00 and I picked up some lunch and we ate together. Luckily, it wasn't as invasive as we had initially thought. Mom is still really sore but is able to get around pretty good. After seeing how well she was doing, Madison and I left to go do our grocery shopping so they could rest.
This was the first time I had taken Madison to Walmart and Publix since November. Saying she thoroughly enjoyed it is an understatement. She had so much fun!! I am looking forward to being able to take her with me more often now and I know she is as well.
We have had yet another wonderful weekend. Even though I am not working anymore ,the weekends seem to still fly by so quickly. I wish Shane had the luxury of taking off whenever he wanted but unfortunately he doesn't. We enjoy the time we are able to spend together on the weekends and make great memories.
Pictures and videos to come tomorrow.
We have had a pretty busy weekend. As the weather is starting to get warmer we are slowly starting to get Madison out some. I took her Friday to get her haircut and she looks oh so cute! The hair was literally getting out of control. I cut it about 2 weeks ago and it looked horrible. Her bangs were getting in her eyes and since she can't lift her arms up, she couldn't move them herself. I just cut the bangs and apparently added layers. Now the hair is back to looking good again, thanks to Kim Guynn!
Mom had outpatient surgery on Friday and we didn't know how invasive it was going to be. Madison and I had planned on staying at their house most of the day helping them out. Dad brought mom home around 11:00 and I picked up some lunch and we ate together. Luckily, it wasn't as invasive as we had initially thought. Mom is still really sore but is able to get around pretty good. After seeing how well she was doing, Madison and I left to go do our grocery shopping so they could rest.
This was the first time I had taken Madison to Walmart and Publix since November. Saying she thoroughly enjoyed it is an understatement. She had so much fun!! I am looking forward to being able to take her with me more often now and I know she is as well.
We have had yet another wonderful weekend. Even though I am not working anymore ,the weekends seem to still fly by so quickly. I wish Shane had the luxury of taking off whenever he wanted but unfortunately he doesn't. We enjoy the time we are able to spend together on the weekends and make great memories.
Pictures and videos to come tomorrow.
Tuesday, March 8, 2011
I was so excited yesterday that we received Madison's new high chair. Amy had told me about this one and after doing a ton of research on it, we decided to order it. Not only was I excited but Madison too was thrilled when she saw it. She spent most of the afternoon in it and just watched everything I was doing in the kitchen. I was able to attach it to the counter so she can sit right there as I am cooking dinner. Here is a picture of it.
When Shane came home and saw Madison sitting it, I could tell he looked worried and didn't think it was safe. I took Madison out so he could inspect and then he believed me that she was okay in it. I promise! I thought the same thing when I saw them the first time.
Shane didn't sleep good Sunday night so when he came home last night he was very tired. We ate dinner and Shane was in bed by 6:45. Madison and I watched the Bachelor and played with bubbles! The video I am going to post is of her laughing at the bubbles. She has this little bubble maker that generates the bubbles and she loves it! The sound was pretty bad on my computer so hopefully you will be able to hear her laugh. The sound you will hear is the bubble maker. Sorry that I didn't realize how loud it sounded on camera.
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