This blog is about our precious little girl, Madison, and her journey with Cystic Fibrosis. We want to share her ups and downs with everyone, and hopefully educate people about CF.
Friday, November 19, 2010
Quick Update
Just wanted to update everyone on Madison's latest checkup. She did great today. Dr. Gaston was very impressed about how well she is doing. She is up to 10lbs 6 ounces now. She even managed to give us a laugh today for the first time. I would have given anything to have caught that on camera, but of course, I didn't have it with me. Thank you all for the prayers and well wishes. Madison has a great support system!
Saturday, November 13, 2010
The CF Care Team
We are very fortunate to have the team that we do taking care of Madison. I don't have pictures of all of them (and can't remember all the names) but as soon as I do I will post them too.
Dr. Gaston has been such a wonderful doctor. He takes the time to explain things and doesn't make you feel like an idiot, like some doctors do. You can tell that he is passionate about what he does and cares for his patients. We are very blessed to have Dr. Gaston as her CF doctor. The other doctor is Dr. Froh. We haven't met with her very much, but what we have has been good. She is so extremely nice and seems to really care as well. Thank you so much Dr. Gaston and Dr. Froh for everything you both have done. Madison is blessed to have you both on her team.
Then we have her respiratory therapist and I feel really badly for forgetting her name. We haven't met with her much either. She has taught us how to give Madison her percussions and keep her lungs clear. As important as she is, I shouldn't have forgotten her name, but my mind isn't what it use to be.
Barb, the nutritionist, keeps Madison on the right track and gaining weight like crazy. Thank you Barb for all the advice and help. Madison wouldn't be to 10lbs now if it wasn't for your help.
Her social worker has been a huge help as well. If it wasn't for Bridgette, we would have never known about Madison being able to get Medicaid and many other things.
Last, but not least, the two ladies that have become my lifeline, Lauren Ahrens and Kristi Gott. I have called numerous times and sent countless emails and have always gotten a response. These two ladies have done anything and everything to help my family out. Words can not express how thankful I am for these two. God sent me two wonderful angels and I thank Him for that.
Here is Madison and Lauren. Lauren is an RN at Kluge and treats Madison wonderfully (and Monty and I). I will never forget the first day we met her. Instead of our name being called out in a waiting room, she walked out and got us. She had this calming smile on her face as if to say "It's okay, she is in good hands." Thank you so much Lauren for all you have done for us.
This is Kristi and Madison. Kristi is Madison's Nurse Practitioner at Kluge. She has been there for us during Madison's good times and bad. I'll never forget the first day I met her. She sat for hours with Monty, Shawn, and myself answering questions, giving us information, and even sharing a few tears. Thank you, Kristi, for all you do for Madison and my family.
The people at Kluge have been so wonderful through everything. I have only known them for a short time but can tell they are all wonderful people. They care about Madison and her health. This isn't just a paycheck for these people, this is a calling. I will never be able to thank them enough for what they have done.
On to the rest of her team. First of all, my mother. She has been at my house every day, for as long as she can. She is the biggest help I have. She will do breathing treatments, feedings, etc. Whatever I need, she does. Thank you Mom for your love and support. You are my rock! We love you!
Dr. Gaston has been such a wonderful doctor. He takes the time to explain things and doesn't make you feel like an idiot, like some doctors do. You can tell that he is passionate about what he does and cares for his patients. We are very blessed to have Dr. Gaston as her CF doctor. The other doctor is Dr. Froh. We haven't met with her very much, but what we have has been good. She is so extremely nice and seems to really care as well. Thank you so much Dr. Gaston and Dr. Froh for everything you both have done. Madison is blessed to have you both on her team.
Then we have her respiratory therapist and I feel really badly for forgetting her name. We haven't met with her much either. She has taught us how to give Madison her percussions and keep her lungs clear. As important as she is, I shouldn't have forgotten her name, but my mind isn't what it use to be.
Barb, the nutritionist, keeps Madison on the right track and gaining weight like crazy. Thank you Barb for all the advice and help. Madison wouldn't be to 10lbs now if it wasn't for your help.
Her social worker has been a huge help as well. If it wasn't for Bridgette, we would have never known about Madison being able to get Medicaid and many other things.
Last, but not least, the two ladies that have become my lifeline, Lauren Ahrens and Kristi Gott. I have called numerous times and sent countless emails and have always gotten a response. These two ladies have done anything and everything to help my family out. Words can not express how thankful I am for these two. God sent me two wonderful angels and I thank Him for that.
Here is Madison and Lauren. Lauren is an RN at Kluge and treats Madison wonderfully (and Monty and I). I will never forget the first day we met her. Instead of our name being called out in a waiting room, she walked out and got us. She had this calming smile on her face as if to say "It's okay, she is in good hands." Thank you so much Lauren for all you have done for us.
On to the rest of her team. First of all, my mother. She has been at my house every day, for as long as she can. She is the biggest help I have. She will do breathing treatments, feedings, etc. Whatever I need, she does. Thank you Mom for your love and support. You are my rock! We love you!
Next, my brother Shawn. Even though I don't have a good picture of him and Madison I will get one up here soon. Shawn has met us at UVA twice and been a huge support. He has helped us with anything and everything we need. Thank you Shawn, we love you!
Now the two most important people on Madison's team, Monty and myself. Monty and I were faced with a challenge that we met head on. Madison is such a joy for us. We love her more than life itself and will do anything to keep her happy and healthy.
Long overdue update
I hate it has taken me this long to post an update on Madison. Things have been very busy around the Rhea household. Not only am I dealing with the everyday task of raising a baby, I also have the little extras to keep her healthy. I also have been dealing with Social Services, my insurance company, and many other people. It is all worth it though, and I wouldn't have it any other way.
Madison has had a couple of doctor's appointments since my last blog. She has had two with Dr. Gaston and the CF Care team. She has also had two with her pediatrician. She has had all her shots (except the RSV Synagis) and is now up to 10lbs. She is growing so much, thank God. We have gotten a lot of good news at all her checkups, and pray it continues.
I would like to share some pictures of Madison on her last trip to UVA. She does so great on the ride up and back.
This was the face she flashed at me when I got her out of the carseat and layed her on the bed in the hotel. I think she was happy to be out of the car.
Even though she was grumpy she still managed to give me a smile. This little girl is very strong already (and with a strong personality).

Sorry it's sideways, but I had to show how she layed for about 30 minutes before she decided enough of this, I want to eat.

Love her heart, she was so hungry she wouldn't let me take the bottle out of her mouth so I could burp her.
Madison has had a couple of doctor's appointments since my last blog. She has had two with Dr. Gaston and the CF Care team. She has also had two with her pediatrician. She has had all her shots (except the RSV Synagis) and is now up to 10lbs. She is growing so much, thank God. We have gotten a lot of good news at all her checkups, and pray it continues.
I would like to share some pictures of Madison on her last trip to UVA. She does so great on the ride up and back.
This was the face she flashed at me when I got her out of the carseat and layed her on the bed in the hotel. I think she was happy to be out of the car.
Sorry it's sideways, but I had to show how she layed for about 30 minutes before she decided enough of this, I want to eat.
Love her heart, she was so hungry she wouldn't let me take the bottle out of her mouth so I could burp her.
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