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.  

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.  

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. 

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!!

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. 

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! 

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!

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.