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.