Day 30

Madison had a good Halloween.  We didn't take her out trick or treating.  We just stayed at home.  I dressed her in her pumpkin outfit Saturday morning.  Mom, Dad, Madison and I went and had lunch and then ran some errands together.  They came over to the house Saturday night and we grilled steaks and watched the game. 

I recorded this video of Madison last night.  She was dancing a lot more before I pulled the camera out.  She got a little shy.  She was having a blast!

We did have a first today though.  I had to call Poison Control!  They were so nice.  Madison got a hold of some of my hair product and twisted the top off and licked some.  Luckily, she didn't get enough to harm her.  Thank goodness!  I got must of it off of her tongue. 

Only two more days until Amy gets here!!  WooHoo! 

Day 29

Madison has been so much fun today and has literally worn me out!  She is just getting into everything.  I am so thankful!  Nothing is holding her back.  She is one determined little girl and amazes me every day. 

We are still trying to decide if we are going to take her out tomorrow for Halloween.  We normally just take her to a few close friend's houses and then go get a bite to eat.  I will post pictures of her in her pumpkin outfit either way! 

Day 28

I didn't get a picture of Madison today. :(  I had the camera with me ALL DAY and didn't snap one picture.  I am so mad at myself!

Madison had a great time this morning at a play date at Madeline Simmons' house with several other kids.  It was a new environment for her to cruise around in.  I am pretty sure Madeline and Madison are going to be very good friends.  Madeline couldn't keep her eyes off of Madison's walker!  As I was getting ready to load up the car, Madison was playing with one of Madeline's toys.  Summer, being the sweet Mama she is, let Madison bring the toy home with her since she didn't want to give it up.  Needless to say, Madison fell asleep with that toy for her nap and her bedtime!  I keep trying to pull it away from her but she wakes up.  Once I get it I need to hide it so we can give it back it Madeline.   

Today was Madison's last day of therapy for the winter months.  Shane and I have made the decision to take a leave of absence and keep her inside this winter.  We are going to miss our Peds Plus family so much! 

This will also be the first year that we stay home for Thanksgiving and Christmas.  We normally go to Dothan every year but keeping Madison healthy is more important. 

Madison and I have quite a bit of errands we have to run tomorrow.  Why?  Amy is flying in on Tuesday and we can not wait!!!!!!!!!  She was just here two and half weeks ago but I miss her terribly.  I hate not being able to see the cute baby bump everyday.  I can't even think about how hard this going to be when the baby gets here. 

Day 27

Madison's new favorite thing to do is to get on the floor and pull out ALL of her books.  I had to get a picture of her doing it tonight.  She was having so much fun!

This morning when Madison woke up I noticed a lot of drainage coming from her left ear.  I knew this meant something was going on  because her ear was bright red also.  I called the pediatrician's office and took her in this afternoon. 

Our pediatrician looked at Madison's ear and sure enough she has an ear infection.  She believes her ear drum ruptured which is why the drainage looked a little bloody.  We were so surprised she hasn't acted like she is in any pain.  She is still a very happy little girl.  Hopefully, the ear drops will kick in before it gets worse. 

We are looking forward to a play date in the morning.  Should be lots of fun!!

Day 26

I took this picture of Madison last night right after her bath.  She was one happy little girl. 

She started getting fussy shortly after the bath though.  Which is why I couldn't post yesterday.  She had been whiny pretty much all day.  I just couldn't make her happy.  Well, at 7:45 we laid her in our bed and turned on cartoons and she got relaxed.  I kept going in to check on her and she still wasn't asleep.  I went in again at 8:45 to check on her and as I started walking out of the bedroom she started crying.  I went back and laid down with her and she was fine.  She was talking, laughing, kicking and had no intentions of going to bed.

Finally, around 10:15 I got up with her and gave her a bottle.  She has been sleeping in our bed now for about 4 months.  We got back in the bed and tried to get her settled down.  She talked up until around 1:45!  Poor Shane was so tired this morning.  Madison woke up at 8:00 ready to play. 

Hopefully tonight will be better!  Wish us luck!

Day 25

I wasn't able to get a good picture of Madison tonight.  Yesterday, before we left mom and dad's, we went out on their dock and watched dad throw his cast net to catch some mullet.  Poor Madison got bitten by mosquitoes.  She has been so fussy this afternoon with them. 

Other than the bug bites, Madison had a good day.  Dad watched her for me this morning while I went to the doctor.  When I got to their house to pick her up he had moved their kitchen table so Madison had plenty of room to roam around in with her walker.  She has really gotten in to kicking soccer balls while in her walker.  Dad had taken two cans of vegetables and put them on the kitchen floor to make a goal and Madison would kick the ball in between the cans.  She can always count on having a great time when she is at MiMi and PawPaw's house.  After all, that is what grandparents do.

Now, Shane and Madison are in our bed and he is trying to get her to sleep.  I think it might be awhile though because I hear a lot of giggles coming from both of them.  Music to my hears!!

Day 24

I had to post this picture of Madison I took tonight as I was getting ready to put her Pjs on.  She was smiling so big I couldn't resist snapping pictures.

Madison had a fun afternoon at her grandparents house.  We had to take Shane's mom to the hospital this afternoon because of stomach pains so mom and dad kept Madison for us.  Luckily, Shane's mom is okay and Madison had a blast at MiMi and PawPaw's house.  Shane was even able to go hunting this afternoon!

When Shane got home, he was showing me some pictures of some deer that he saw today.  We were trying to figure something out with his phone and I got my phone and tried to figure it out too.  Before we knew it, Madison had gone to her toy chest and picked up her play cell phone and acted like she was doing the same thing.  We got a good laugh out of it. 

Thank you Lord for blessing us with another day to enjoy our precious daughter!!

Day 23

Well, I am still having problems uploading the video of Madison.  I was able to post it on Face Book.

I wanted to post this picture yesterday but didn't get a chance.  I took this picture Thursday night when we stopped in Dothan and had dinner with Big Mama and Aunt Sarah.  Big Mama enjoys seeing her great grand-child every chance she gets. 

Madison has had so much fun today.  She has been cracking me up all day!  She says "please" for everything whether she can play with it or not.  We were watching football tonight and after Alabama scored a touch down, Madison heard the announcer say "touch down" and she threw her little arms up in the air and said "touch down!" 

One more story...this afternoon I had to run to Walmart and Publix.  Mom and dad went with us to run errands and we went out for lunch.  After I dropped mom and dad off at the house I called Amy and was talking to her.  Well, as I was driving down the road I dropped my cell phone and it went under the seat.  I was hollering to Amy what happened and that I would call her back hoping she could her me.  I turned around and looked at Madison and she was cracking up!!  I pulled over on to a side street and recovered the cell phone and all was good again.  I am sure Madison thought I was crazy hollering the way I was. 

All in all...it was a wonderful day!

Day 22

We got home from Birmingham last night about 8:00. We were so glad to be home, especially Madison. She slept 13 hours last night! We were very pleased with all the check ups we had this week. We will be going back the first week in April and do it all again.

I made a video tonight that I have been trying to post. It isn't allowing me to upload the video. I will have to try again tomorrow.

Thank you for all the prayers for our family this week.

Day 21

What a busy few days we have had! Yesterday was CRAZY seeing three doctors in one day. This is just too much for Madison, and I try to avoid it but we had to do it because of some of the doctor's schedules.

We started out seeing ENT at 9:00 yesterday morning. The tube in Madison's left ear is completely out. The tube in the right ear was completely blocked. The doctor drained her ear and now the tube is working properly again. Shane and I have decided that when the right tube falls out we will not redo them. The risk of anesthesia is just too high. We would only be looking at a 10% hearing loss if we don't redo them. The doctor told us that he would only be concerned about the 10% if Madison is in a classroom setting.

At 1:00 we met with our pulmonary doctor. He was, overall, very pleased with how well Madison is progressing. We had tried to do a sleep study in June and the readings were not very accurate because of how little Madison slept. We have noticed that Madison has started snoring and is breathing louder while asleep. In the past few months, Madison has woken up in the middle of night screaming and having a hard time catching her breath. This has only happened about 3 times and her stats are still good when this does happen. The doctor is concerned about obstruction in her airways that could be causing this. The sleep study would show this. We were scheduled to do the sleep study last night. I didn't really have a good feeling about this because of how bad it was last time. Madison sleeps with Shane and I every night and is used to me being right there beside her. During the sleep study, this would not be possible and I would not be able to cuddle with her. After hearing what all I couldn't do with her, Shane and I talked and decided that we would not put her through this. We are going to have to talk to the doctor and come to some sort of compromise to meet their requirements and to meet ours.

After the pulmonary doctor we had to meet with the opthamologist. He had to dilate her eyes which was just torture on her. They had to put four different eyes drops in her eyes. He did notice some cloudiness on the cornea which we had been told before but it still isn't bad and is not affecting her vision yet. Overall, three good appointments yesterday.

Today was the day I have been so worried about. We first met with our genetic doctor at 9:00 and again, she was very pleased with how well Madison is progressing.

At 10:15 we had the cardiology appointment. Her blood pressure was really good, 114/67 and the EKG looked good as well. Madison did so good during the echo-cardiogram. The doctor did tell us that Madison now has two leaks in her heart. One is in the aortic valve and the other one is in the mitral valve. However, these two leaks are very minor. He said because they are so minor he didn't feel the need to put her on any blood pressure medicine. This will have to be monitored. As hard as it was to hear this I had prepared myself for the worse. I had a feeling this was the news we were going to hear. I think this is why I have not been sleeping the past few weeks leading up to these appointments. This is all part of the disease and is common in all the I-Cell children.

Tomorrow we see two more doctors and then we are Panama City bound. WOOHOO!! I probably won't be able to post an update on here tomorrow due to the fact that her last appointment is at 1:30. We probably won't leave Birmingham until 3:00. I cannot say thank you enough for all the prayers that are constantly lifted up for our family and especially for our precious Madison. She truly is our gift from God and has brought so much happiness to our lives and the lives of many others. We love you all!

April Riley

Day 20

Well, we made it to Birmingham! We left the house at 10:45 and pulled in to the hotel at 5:15. We stopped in Dothan and had lunch with Big Mama. She cooked us a great meal. After we left Big Mama's house Madison feel asleep and slept until we were about 30 minutes out from Birmingham. We had dinner at the hotel and came back up to the room so we could watch Dancing With the Stars!!

We are getting up early in the morning. We will see three doctors tomorrow. I will post all the updates from those appointments tomorrow tonight.

The picture is taken in the hotel lobby. We were eating dinner and Madison was playing with the paper plates. She had just finished eating.

Day 19

We are heading out in the morning going to Birmingham. Still busy trying to pack everything for the trip. I will post updates of all the doctors appointments each day. Sorry so short tonight.

Day 18

Miss Madison has had a very busy day. We got up this morning and headed out to Pier Park with mom and dad. We had lunch at Five Guys. Madison loved this because she is such a people watcher like me. She was really enjoying watching the madness of that restaurant.

I needed to get her some fall clothes, especially for the Birmingham trip. We are going on the first year of Madison not changing sizes in clothes. She has been in 18 months for a full year now. This is pretty normal though with her disease. She has pretty much stopped growing.

After all that shopping she got a good nap and slept until 6:00! Once I woke her up she had the giggles until I put her back down for bed. She has such a happy soul. Madison does miss her Aunt Amy though. She has been walking around the house calling and looking for her. Lucky for us she will be back in 3 weeks!! We can't wait!!

Day 16 and 17 - Madison's BIG News

I was in on a little secret that Paul and Amy were coming in to town on Tuesday afternoon. The story I was told was that Paul had to do some work in Destin and Amy and Scout were coming along for the ride. The plan was for them to show up at our house for dinner on Tuesday to surprise Mom and Dad. However, we were all in for a huge surprise when I opened the door to Amy holding a bouquet of pink and blue balloons. It didn't occur to me what was going on until Amy asked Madison if she wanted to be a big cousin!! Baby Cristina will be making his or her arrival around April 17. We could not be happier about the newest addition to the family. We all know Madison is going to be a great big cousin.

Day 15

I had to post this picture of Madison and Madeline Simmons playing today. I was so glad we were able to stop by and visit with them, even it was for just a little bit. These two were so cute together! I hope we can get them together again soon!

Sorry my posts are a little shorter than normal.

Day 14

Madison has had such a great day. We have been cleaning house most of the day. She is so funny because as I am dusting the house, she has to have a rag just like mine and she will walk behind me and act like she is dusting too. I should have gotten a picture of that today but it complete slipped my mind.

Thank you Lord for blessing us with yet another day to make precious memories with Madison.

Day 13

Today has been a great day. I have had so much nervous energy and anxiety. I know it is all related to all the appointments next week in Birmingham.

Madison has been the sweetest thing, which she is everyday! I had mentioned in a previous post about us working on her manners. Well, today she was playing with a toy and dropped it. This was while I was preparing our lunch. She is always right there in the kitchen with me. As soon as she dropped it she started pointing at it and was saying "please" "please" "please." I picked it up and handed it to her. I didn't have to ask her to say thank you like we normally do. She looked up at me and said, "Thank you Mama." Oh, it just melted my heart!!! I just love her so so much!!

Day 11 and 12

Well, I was so upset that I missed blogging yesterday. I had to go to Dothan to attend a bridal shower. I didn't take Madison because we are trying to keep her healthy, especially before our big trip to Birmingham next week. Shane and I decided that he would stay home with her while I went to shower.

I never leave Madison for more than two hours or so. Yesterday, I left at 11:30 and didn't get home until 6:30. What was bas about it though was that Madison didn't wake up until 10:30 so I only had one hour to spend with her.

Since, she slept in so late she didn't get an afternoon nap. When I got home she was so sleepy but still happy to see me. She became so clingy to me and didn't want me to leave her side. I put her in bed at 7:00 and by 7:15 she was asleep. It only lasted about a hour and she started screaming. I went in and laid down with her and I couldn't leave her side. Every time I would try she would start that horrible scream and then her breathing would get real heavy. Finally, I just put on my pj's and got in bed for the night with her. Madison needed some major cuddle time with her mommy. We cuddled all night long. She sleeps with us every night and Shane said this morning when he checked on her she was right up beside me. She did that ALL NIGHT long.

This morning it was the same thing. She didn't want me to put her down. I think she thought I was going to leave her again. It broke my heart. I told my mom and dad this morning I didn't think I could leave her again for that long of a time. She is finally starting to see that I am not leaving and got in her walker and played. So, that's the reason why there was no blog post for yesterday. Hopefully, that will be that last time I missed blogging.

Day 10

We have really been working on Madison with her manners. Before, anytime she wanted something, she would do this loud grunt and point to what she wanted. It was after a lot of consistency, but we finally having her saying "please" when she wants something and "thank you" after she receives it. The dilemma is, she thinks that because she says "please" she should be able to get what ever it is she may want.

It is so hard to resist that sweet little voice when she is asking so politely. I think she knows I am a sucker for it too!

We are trying to get her to understand that she can't play with everything mommy and daddy have. For example, tonight, as I was cooking dinner, I had a onion I needed to chop up. I pulled my red cutting knife out of the drawer. The red knife caught Madison's eyes and she came running with her hands out saying, "please," "please," "please." After telling her no repeatedly, and explaining to her why she couldn't play with it, she came and grabbed my leg and kept asking nicely. I knelt down and said, "You can't play with the knife, but you can play with this red dixie up." Oh the joy on her face when I handed her the cup. Then she looked up at me and said, "Thank you!"

To make it even better, I poured my water bottle into a red cup so she could have something like mommy. She played with the cup the entire time I cooked dinner. Every time I would take a sip of my drink she would pretend to take a sip out of hers. SO SWEET!!

Day 9

The picture is from today but the story is from yesterday. I wanted to post this story yesterday but didn't have time.

Every Wednesday, Madison has Early Intervention therapy, and her therapist comes up to the house and works with her for about a hour. Yesterday, she was showing Madison an alphabet book. Each page had a picture of the something beginning with that letter in the alphabet. When they got to "D", there was a picture of a dog. The therapist asked Madison what it was and Madison looked at the picture and said "Scout!" Amy and Paul have a dog named Scout and that is the only dog she has really ever been around. I thought it was too cute not to share.

Day 8

Tonight, as I was cooking dinner, Madison was playing with our bread bag. It was our bread from last week so there was only a few pieces left in it. She LOVES to carry the bag around and toss it back and forth. She did this the entire time I cooked dinner. As we were getting ready to sit at the table to eat, I told Madison it was time to put the bag down. Now begins the break down. She started crying and screaming as I was putting her in her highchair. She finally settled down but wouldn't eat. She kept turning her head when I would try to feed her and would point to the bag. I told her she couldn't have the bread bag back until she ate all of her dinner. Well, the whining continued and after about 10 minutes, I got up and grabbed the bag and put it in the garbage can. She just looked at me with these big tears in her eyes and I explained to her why she lost the bag. After pouting for a little bit, Madison finished her dinner.

After we finished eating, I went to change her diaper and put her back in her walker as I cleaned the kitchen. Well, I didn't shut the pantry door all the way and as I am doing the dishes I turned around to check on her and found her leaning over the garbage can trying so hard to get the bag out of the trash. The pictures were just too cute not to post. She still didn't get the bag back but was still a happy girl!

Day 7

I took this picture this afternoon as the sun was starting to go down. It was so funny to watch Madison's face as she watched her shadow on the wall move. She didn't know weather she should laugh or cry!

I used to love this time of year as the weather turned cool. Now, I find myself sinking into this depression as fall is here and winter is quickly approaching. Winters are so brutal on I-Cell children. Last year was the first fall we went through with the knowledge of what Madison had. I had just joined the support group on facebook. I was not emotionally prepared for what all happened last year. In the small I-cell community we lost, I believe, 6 children, in a 4 month time frame. Three of those children I hadn't gotten to be pretty close to. The reality of what we are up against really hit home.

Today, I had myself a pity party. I was asking God why we had to go through this? Why did he have to choose my daughter to have this disease. I hate that Madison isn't able to go and do like healthy children can. It breaks my heart for her. After voicing my anger to God, I finished praying. Shortly after that, I had such a peace in my heart. Why not us? As hard as this journey is, I thank the Lord that Madison was born into our family. It breaks my heart even more to know that she could have been born into a family who would not have cared for or loved her the way we do.

I am constantly reminded of this when I go out and see parents who talk horribly to their children and just don't care for them AT ALL. That is why Madison was born into our family. I would not trade anything for the joy and happiness she has brought to us. Not only us, as our family, but friends and people whom we have never met. As a Christian, I just wish I could touch as many people as our precious Madison has.

I know I will have these pity parties every now and then, and that's okay. I know that the Lord hears my cries. I know that Madison will one day be healed of this disease, whether it be on earth or heaven, and I will always praise his name because I know His will was done.

Day 6

Apparetly, Madison thinks she has had a rough day! I think she is getting tired of my snapping so many pictures of her. This was the last picture I took of her today. After taking about 15 pictures, she looked at Shane and did this pose. So glad I got a picture of it. She cracks us up!

Today, my dad came up to the house to watch Madison for me while I went to Marianna for a doctors appointment. I was gone for about 3 hours. Those two have so much fun together. I love it when I come home and see the joy on my dad's face and listening to it in his voice as he is telling me about what all they did. I am so blessed to have such a great family.

When I came back from my doctor's appointment, I had a horrible headache. After dad left, I put Madison in the bed with me and laid down. I truly believe Madison can sense when I am sick. She just laid there holding my hand and never gave me in trouble. She did keep trying to give me her pappy (pacifier). After a few times of me not taking it, she reached over and stuffed in my face. I finally took it and held it like it was in my mouth and we both drifted off to sleep. Another wonderful day we have been blessed with!

Day 5

I wanted to post this picture of Madison and mom that I took today at church. Mom was honored this morning with the Presbyterian Woman of the Year award. I am so proud of her and so blessed to have her as mom.

Mom does do much for us and I know we do not thank her enough. I know that this journey we are going down would be so much harder if we didn't have mom and dad to help us. I am truly grateful for all that they do for us.

Madison has had a great day. We all went to church this morning and then went out to lunch with mom and dad. We got our Sunday afternoon nap in. After that, it was time to tackle Madison's closet and dresser drawer. I hate doing this! I did shed a some tears when I opened a box of old clothes and it contained her preemie and newborn clothes. It was so hard to remember how small Madison was. Where did the past 3 years ago? I can't believe how fast time is flying by. I am so not ready for this.

I was cleaning out one of Madison's drawer that had just blankets in it. She came up behind me in her walker and pointed to the blanket, looked at me, and said "blanket." I am so happy to hear her talking so much. She is saying about 2-3 new words a day right now.

One last story....tonight for dinner I cooked pig-in-the-blankets and I had the hot dogs boiling on the stove. Madison was in the kitchen with me. The water started boiling over the pan and started smoking and Madison pointed up to the stove and said "uh oh." Shane and I both started laughing. I love making precious memories with my precious family!

Day 4

We haven't had a very exciting day today. Shane had to go up to his Mama's house and mow her yard. Madison and I stayed home and cleaned the house.

At about 3:00, Madison started getting sleepy but she wanted me to lay down with her. This is one of my favorite things to do. See, when Amy and I were little, my Granny Holley would keep us everyday. When we would go to take a nap we would all three pile in her bed and tell stories. If one of us got the giggles we would all get them and Granny would be laughing harder than any of us. Madison reminds me so much of her. When Madison and I lay down, she gets the giggles and can't stop laughing. This goes on for about 30 minutes and then she is out. Everyday I am always reminded of my sweet, precious Granny when Madison does this. It warms my heart when I am reminded of all the great memories we made. I miss her so much and wish she could be here with us. I know for a fact that her and Madison would have a ball together because they are like two peas in pod.

Day 3

I had to post this picture of Madison giving her "serious look" to me tonight when I asked her if she was ready to go to bed. We can't help but laugh every time she does this.

This has been such a busy day for us. Madison woke up before 11:00 this morning. YAY!! We had some errands we needed to run. I needed to go to the tire store, the bank, Walmart, the grocery store and have lunch with dad. We had lunch with dad after Walmart and before the grocery store. We picked him up and he rode with us.

At lunch, dad decided that he would go with me and push Madison in the grocery cart for me....BIG MISTAKE!! When I go to the grocery store I am on a mission to get in and get out as quickly as possible. Dad, however, takes his sweet time...getting a cup of coffee, stopping at the pharmacy to say hello, etc, etc. I am walking way ahead of him getting stuff to put in the cart telling him to stay behind me. He has to show Madison everything in the grocery store!! It was cute but it wasn't.

After we dropped dad off Madison feel asleep in the car and got a good nap in before daddy got home. The biggest news is that Madison as started talking up a storm this week! With her disease the children have a very limited vocabulary but each child is different so it is hard to tell how many words they will say. Right now, she can say about 15-20 words. Today, she added more to that number and said "boat," "pool," "thank you," "aww man" and "yuck." She dropped a toy tonight and since she can't bend down to pick it up, she points to it and says "please." After Shane handed her the toy, she looked up at him and said "thank you" and smiled so big. Shane and I both started praising her. Then she went on and on saying it.

The moment I am most proud of though is this. Right now, Madison can't say hardly any sentences. The only sentence she says is "I did it". Tonight I took her outside because she loves to walk around the pool at night. I had the pool light on for her and took her out and she pointed to the pool and looked at me and said "pool." I said "Yes baby. That's the pool." Then she looked back at me and said "I wanna du in du pool." I just stared at her in complete shock and then ran inside with her to tell Shane. Of course she wouldn't say it again. All she would say is "da pool." It's moments like that I wish I had the video camera handy.

Once again Lord, I thank you for giving me another day to enjoy our precious daughter and pray that I have many, many more of them.