Day 67

Well I have had a sick feeling to my stomach all afternoon.  With the weather being quite a bit warmer than the past few days, I took Madison out for a little bit.  Madison only got out at one place.  Shane and I decided to go to Smitty's today for lunch with Madison.  Since we went kind of late in the afternoon they were not very busy.  We sat in the corner and didn't really have people around us.  When I have Madison out with me I hear every cough and sneeze and I just cringe.  Madison is certainly not showing any signs of getting sick and I hope and pray it stays that way. 

This video just goes to show how good she is feeling.  She has been running back and forth in the kitchen most of the night.  I took some video of her and wanted to share it with you all.  I hope you enjoy it.

Day 66

Madison is tuckered out after a wonderful day of playing with Mimi and Papa.  Shane closed the tire store this week and has been hunting most of the week.  I told him I was going to go with him one day during the week and picked today to go.  I didn't want to get up at 3:30 in the morning so I went with him on the afternoon hunt instead.  Mom came over to the house and kept Madison while I was gone, and then dad came over later on this afternoon so they could all eat dinner together.  Madison had blast.  She was needing some time with just her and her Mimi. 

When we got home tonight around 7:30 I could tell she was starting to get tired.  Mom and dad hadn't even been gone a hour and she was out.  I rocked her to sleep in the recliner and was able to give her a breathing treatment.  She didn't even wake up.  I did have to change her diaper before I put her in our bed and that caused her to become wide awake.  I guess she got her little power nap and is ready to go again.  Off I go to try to get her to sleep.  Wish me luck!

Madison not wanting to go to sleep.

Day 65

Madison and I have had so much fun today!  With the week before Christmas and all the chaos, Madison and I haven't had much time together just the two of us.  We have gotten so used to this and have our routine in the morning.  She gets up drinks a bottle, gets a bath, play time, eats lunch, takes a nap, play time again, eats dinner, play time again with daddy, then we go to bed.  The past several days we haven't had our regular play time.  She has had it but it has been with either Amy, Mom, Dad or Shane.  I have missed that time so much.  We made up for it today.  Luckily, she didn't take as long of nap as she normally does so we had a lot of time to play this afternoon. 

Dad came over to the house and had lunch with us.  Some friends of our had gotten him one of those Hallmark books that you can record yourself reading it.  Well dad has been trying to record himself reading it for several days now.  He brought it over with him and I was cracking up listening to him.  First off, he didn't have his glasses which he really needed.  Then he would get so dramatic when he was reading that it would beep before he could finish the page.  He gave up and said he was going to try again another day.  Needless to say, I got a good laugh out of it.  I can always count on dad to make me laugh!

Day 64

We had a wonderful Christmas Eve and Christmas Day.  It just doesn't seem the same without Amy and Paul here.  I missed them terribly.  This holiday season has been pretty rough for me.  I remember before we had Madison, I always looked forward to carrying on our holiday family traditions with her.  We always have so much fun when we get together with our extended family and I wanted my children to grow up with the same joy it brought me.  Some of my fondest memories are with all my cousins on Christmas Day and Christmas night.   

With Madison's disease all of our traditions have changed and we don't get to see everyone like we did around the holidays.  Madison's health is more important but it is still hard.  This is the first Christmas Eve that we did not attend our candle light service at our church.  That was when it really it me that you really realize what we are up against.  I know it is hard on mom and dad as well.  They have changed their traditions so they can be with us during the holidays so they miss out as well.  We do still make the best of the situation and make sure we make wonderful memories with Madison.  That is what is most important to us.  Hopefully, Madison will continue to stay healthy.   

We have been amazed by how active she has gotten in the past months.  Anytime she gets a cold, it sets her back.  I am certain we have made the right choice by keeping her in this winter.  However, summer can not get here fast enough.  I miss taking her to the grocery store, going out to eat, going to church, having play dates, etc., etc., etc. 

Here are some pictures and a video from Christmas Eve and Christmas Day.  I also included some pictures from when Amy and Paul were here. 

Drinking a bottle while Mommy cooks Christmas Eve dinner.

Patiently waiting for MiMi Papa to come over after church. 

They're here!!

MiMi and Papa let Madison open a gift on Christmas Eve.

Christmas Day.  MiMi helping Madison open her present.

 Madison watching Amy and Paul open their presents.

Amy and Paul opening their presents.

Madison being her happy little self.



Amy and Paul helping Madison open her present from Grandma Jackie.

I am sorry this video is so dark.

I took it Christmas Eve after mom and dad

had left.  Shane had fallen asleep on

the couch and I was about to do Madison's

breathing treatment.  She started laughing at a

face I was making for her.  Love that girl!

I hope everyone had a Merry Christmas.  I can not say thank you enough for the prayers that many of you lift up for our family daily.  I am so thankful for the faith I have in knowing that God hears all of our cries but it will be His will that is going to be done.  Love you all!

Day 63

Madison has been the sweetest thing today.  I went to bed last night with a horrible headache.  I didn't take any medicine for it because I kept thinking it was going to go away.  I tossed and turned all night.  Since Madison sleeps between us and literally, right beside me, she tossed and turned all night as well. 

I finally got up at 6:30 this morning and took some medicine.  I went back to bed and Madison and I didn't wake up until 10:45.  I still had my headache so dad came up to the house with lunch for us and watched Madison so I could rest some.  We have been bums all day today.  Thank goodness I finally starting feeling better late this afternoon. 

I wanted to post this video of Madison that I recorded after I gave her a bath tonight.  She is starting to get camera shy and wasn't laughing near as hard as she was when I was singing to her without the camera.  I still managed to get a few good laughs.  I hope you enjoy it.

Day 62

Once again, I am sorry that I haven't posted in a few days.  Amy and Paul both flew in on Thursday.  We have been very busy spending a few days with them.  They were only here for 4 days and we had a bunch of stuff to squeeze in to such a short period of time. 

It was so great to see how much Amy's little baby bump had grown.  She is glowing!  I do believe she is the cutest pregnant women I have ever seen.  Madison and I took her to the airport yesterday and once again it was very hard.  It is getting harder and harder as her pregnancy furthers.  We are looking forward to the beginning of February when Amy comes back and will be here for an entire week.

Madison had such a wonderful time Amy and Paul.  She felt the need to entertain them the entire time.  I have so many pictures I want to upload but our computer has a virus on it and I can't find my camera cord for the laptop.  Once I locate it I will be uploading some pictures and videos. 

Hopefully I am back to my routine of posting everyday.  Madison is doing very well.  We have kept her in so much this winter and I do believe that has made a difference.  I am praying that this will be our first Christmas and New Year's since she was born that she hasn't been in the hospital.  

Dad watched her for me this morning so I could do my Christmas shopping for her.  I went to Toys R Us and had a major melt down in the store!  Madison is 3 and is just starting to get to the point where she is limited to the toys that she can play with.  She is playing with toys that range for 0-24 months.  Above 24 months you start getting a lot more toys that she can't play with because of her limitations.  I feel like she has all the toys that we can get for her that she can actually use.  It was  frustrating because it just made me aware of her disability.  Yes, we are aware of her disability but we overlook it everyday and don't even notice it anymore.  Today, I felt like it was just being rubbed in my face on every aisles I went down.  I got in the car and let it out. Madison isn't aware of her limitations and I don't ever want her to be.  I will do whatever I have to, to make sure that Madison is happy.  Luckily, she doesn't have to have toys for me to accomplish that. 

Day 61

Madison was so excited today that she was able to get out of the house.  Finally, the weather wasn't so cold.  We took complete advantage of it and went to MiMi and PaPa's house.  We stayed over there for about two hours and Madison had a blast!! 

We are all starting to get really excited because Amy and Paul will be here with us tonight.  Madison keeps walking around the house saying "Paul."  Then I will ask her if she can say Amy, which she can by the way, but she still says "Paul."  Too cute.

I didn't get a picture of her today but I did want to post some of my favorite pictures of her and her daddy.  Ignore the dates on the pictures though.  I forget to change it. 

Day 60

Today I was going through some old pictures of Madison and found some from her first Christmas.  It is so hard to believe how little she was.  She was in premie clothing and they were even too big on her. 

Will and Ella Hicks with Madison

Madison in her stocking

Elizabeth Hicks with Madison

Santa Clause a.k.a. Papa

Madison sleeping in her candy cane pjs on Christmas Day

Mommy and Madison on Christmas Eve

Aunt Amy and Uncle Paul with Madison

The Riley family



Day 59

Madison didn't wake up today until 10:30.  Dad came up to the house at 11:30 to watch her for me while I went to a doctor's appointment out of town.  I thought I would have been home by 3:00 but I didn't get home until 5:00.  I know PawPaw didn't mind all the extra time he got to spend with Madison though.  She didn't take a nap for him.  When I got home her eyes were so heavy!  I am sure she will be in bed early tonight.  Dad did tell me that Madison was a big fan of the Beach Boys.  He said that he pulled up some of their songs on the computer and they danced.  I know Madison loved that!! 

Two more days until Amy and Paul come!!

Day 58

Madison finally got to see her MiMi today!  She hasn't seen her since Thanksgiving.  That is the longest they have gone without seeing each other.  It was so cute when she saw her.  Madison took off to her in her walker and had her arms up the entire time.  Mimi couldn't pick her up fast enough. 

Madison had a rough night though.  Normally, I go and lay down with her every night but Shane said he would do it.  They both fell asleep pretty fast.  After I saw that they were both asleep, I stayed up and watched a movie in the den.  At about 11:30, I started going through and turning off all the lights when Shane hollered out for me.  I could hear Madison screaming this horrible cry and I ran in there.  Shane said she woke up and rolled over to look at him and them rolled over and realized I wasn't there.  It broke my heart!! 

Madison wakes up about 3 to 4 times a night.  Usually because she has lost pappy.  Once she gets situated again she grabs my hand and falls back asleep.  She was crying so hard she couldn't hardly catch her breath.  I picked her up and we hooked her up to the pulse ox monitor and her oxygen levels were in the 70s and 80s.  After she got in the high 90s and stayed there for more than 10 minutes we went back to bed.  She clinched on to my arm all night long.  I felt so bad I wasn't there when she woke up.  Hopefully tonight will be a better night.

Day 57

Well, it has been 11 days since Madison has gotten out of the house.  This weather has just been brutal.  Today however, I got her out of the house.  I woke up with a horrible headache and I forgot to get my migraine medicine filled.  I didn't want to take Madison into Publix to pick it up so I called them and they transferred to Walgreens for me so all I had to do was go through the drive through.  Madison saw me loading her car seat into the car and went crazy!  She was so happy.  The whole way there and back she was one happy little girl.  The weather was perfect too!  I was so happy she was able to get out some and I know she was as well.

I had to record Madison this afternoon doing this.  When I finally got the camera she had already been doing this for about 10 minutes.  We are starting to get a lot of Christmas cards in.  We got one in from Matt, Summer and Madeline Simmons.  I opened it up and handed the picture to Madison to look at.  When she saw Madeline she started laughing so hard and kissed and hugged the picture. I wanted to share it with you because it is just too cute not to.

Day 56

I took this picture this morning after I bathed Madison.  With this cold weather we have been having, I always put a towel in the dryer for about 10 minutes prior to bathing her.  This morning after she got wrapped up in the warm towel she would cuddle with it.  I thought at one point she was going to go back to sleep before I could even get her dressed.  So sweet!!

We are excited that one week from today Amy and Paul will be here with us!!  We can't wait to see them!!

Day 55

Madison has had yet another wonderful day!  She is becoming quite the night owl.  Last night she didn't fall asleep until 11:30.  At 10:30, we turned the TV off is our bedroom and she laid there and kicked, laughed, screamed and talked for a hour!  I laid her down at 8:30 and laid down beside her and I thought she was getting sleepy but was quickly proven wrong! 

Everyday Madison takes an afternoon nap.  For two days now after I have put Madison down for her nap, and I put her oxygen on her, she looks up at me with the biggest smile and says, "Thank you." Then she rolls right over and goes to sleep.  It the sweetest thing.  Yesterday it made me cry!  I just love that sweet little angel! 

Day 54

This weather has kept us in the past week.  Madison hasn't left the house since last Tuesday!  She does so well being cooped up in the house for such a long period of time.  I am already for summer to get here!!  I used to enjoy the fall and winter but now I dread it every year.

We didn't have much of an exciting day today.  I cleaned house most of the day and Madison entertained herself.  We did stop and play a lot so that it why it took me all day.  I am starting to get concerned with how fussy Madison has been getting.  She is fine in the mornings but after she wakes up from her afternoon nap she is so grumpy.  It is hard to tell if she is in pain or if it is the frustration of not being to do as she wants.  I am going to call our genetic doctor this week and see what she has to say about it. 

Maybe we will have a more exciting day tomorrow!

Day 53

I wanted to post this story yesterday but time got away from me.  Yesterday afternoon I was in our bathroom getting ready.  As I was walking out of the bathroom, Madison was in front of me in her walker and stopped.  I was in a hurry so I tried to step over the side of her walker.  She started walking as soon as I was stepping over and my foot got caught up in her walker and it caused me to fall on our bedroom floor.  I turned around real fast to make sure Madison was okay and to my surprise she was laughing hysterically.  She looked at me and said, "Again!" "Again!"  It was too cute.  Luckily, we were both okay and we both got a good laugh out of it. 

Day 52

Madison didn't wake up today until 11:45!!  She was late going to bed though.  I have been meaning to record this and finally got around to doing it.  Paul's mom (my brother-in-law) bought Madison a Raggedy Ann doll last year. Madison LOVES this doll.  This is the only doll of hers that she will actually carry around. 

Almost every night for about 30 mintues, sometimes even a hour, Madison carries this doll back and forth to Shane and me.  She wants us to hug it.  After we hug it, she wants it right back.  It is the cutest thing.  I finally recorded it tonight and I wanted to share it with you all.  I hope you enjoy it.

Day 51

Madison didn't go to sleep until around midnight last night.  I put her to bed around 8:30 and had been going in to check on her.  Well at 9:30 when I went to check on her she got so happy.  She was laughing, kicking and talking up a storm.  She was too happy to keep her in the bed.  I took her out of the bed and went into the den with her to play.  We stayed up until 11:00 and then we tried to lay down again.  She still wasn't keen about going to sleep but gave it up shortly after. 

She has also become a very strong willed child.  She won't let me brush her teeth anymore.  She has to do it.  She will let me hold her hand and guide her to where she is still getting a good brush.  She is also determined to feed herself.  She lets me feed her the fruits and vegetables but she has to feed herself the yogurt.  She hands me the spoon to put yogurt on it and then I hand it back to her so she can feed herself.  I am so proud of her with the determination she shows.  Who cares about the big mess we make...it is totally worth it.  It melts my heart when she claps for herself because she knows she has done something she should be proud of.

Day 50

Madison and I have had SO MUCH fun today!  It was one of those days where we stayed in our pajamas and played all day.  I have had a UTI and have not been 100% these past few days.  Madison hasn't had her normal play time that she loves so much.  Luckily, she did get to see PaPa yesterday and he entertained her while I went to the doctor.  We made up for all that lost time today. 

I put her down for her nap after lunch.  I soon as I laid her down I went to clean the kitchen and then I was going to go and lay down with her.  She feel asleep before I finished cleaning the kitchen.  As soon as I got in bed with her she gave me the biggest smile that just melted my heart!  I love the my right hand is like her security blanket.  Most nights she can't go to sleep without holding my hand.  I love that during the night when she lets out a little cry, as soon as she grabs my hand and pulls it close to her, she is happy again and goes right back to sleep.  It's these little precious moments that I will treasure forever.