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!

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!

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.

Once again, thank you to everyone for making sure Madison gets the care she needs. We are truly blessed to have such a great team. We love you all!

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.

She is so happy after a full belly and a good burp.

After she got tired of laying on the bed, I took her feet out of her outfit (the child loves to be naked) and let her do her favorite thing, SWING. Thanks to my cousin Angie, Madison can now swing in the hotel room.

We would like to thank everyone for all the calls, emails, and prayers concerning Madison. Monty and I could not have made it this far without all the support. We love you all.

The beginning of the CF journey.

On Sept 20, 2010 Monty and I loaded up Madison for her first long car ride. Dressed in one of her "Uncle Shawn" outfits we headed up 81 towards Charlottesville and UVA. (Madison was to have her sweat test the following day) She did excellent on her first ride and only woke up once to eat.
However, when we got there she was absolutely wore out. She stretched and stretched before getting her pappy and going to sleep.

After a sleepless night, we got her dressed (in another Uncle Shawn outfit) and us ready for what was going to be a long day. As we waited on Uncle Shawn, I sat and watched this beautiful little girl and wondered how anything this precious could be sick.

After what seemed like hours after the test was done, they informed us that we needed to go to Kluge Children's Rehabilitation Center for further information. It felt like the world had come to a stand still and the only thing I kept thinking was "why". After a few moments, we headed off to meet what is going to become a second family, her CF care team at Kluge. They started her on her medication, gave us a ton of information, and 4 hours later we were headed back home to start this journey.

(Madison before her second appointment at Kluge)

At her second appointment they put Madison on a breathing treatment. She does great with them too. A big thanks to Uncle Shawn and Tyler for getting the equipment to her so quickly.

Madison changed our lives the day she came into this world, and is still continuing to change it everyday. We have learned so much from this little girl already. We may not know why she was born with this, but one thing is for sure, she is a gift from God. He has wonderful things in store for this little angel, and I can't wait to see what it is.

Welcome to the world Madison Mackenna Rhea

On September 3, 2010 at 4:35 pm, our beautiful 6lb 13.2 ounce, 19 1/4 inch long daughter, Madison Mackenna Rhea, came into the world.

This beautiful angel has changed our lives so much, and we couldn't imagine life without her. She lights up our world and has melted our hearts, but how could a face like this not.

The day we brought her home she wore the outfit that my grandparents and aunt bought for me when I was born. She looked so adorable in that little outfit, and it brought tears to my eyes. I was so glad to be taking my daughter home and start my journey as a new mom. We love you Madison, so very much.

Ultrasound

Today was what should be our final ultrasound before Madison gets here. Everything seemed to be okay. We will find out more at my checkup next week. We got some good pictures of her though. We verified she is a girl! We also discovered she has hair and what seems to be a lot of it! She has already discovered her toes. She was playing with them a lot today and it was so cute to watch. I'm glad they got a picture of that as well. They estimated her to weigh about 4 lbs 2 ounces rights now. It is just so hard to believe that in about 9 short weeks I'll be able to hold her instead of watching her on a screen.

Packing for camp

Well, Kylie is going to camp for the first time tomorrow. Even though she isn't going far it's still very exciting for her. She is going to a church camp about 15 miles from the house. She is going to have so much fun playing, meeting new friends, and learning about the Lord. Monty and I are so glad she is excited. This will be an experience she will never forget, and hopefully lessons will be learned she won't forget either.
She has been asking all kinds of questions this morning about it. There was one that made me laugh. She asked that if something happened and I had the baby if she had to come home. I asked her is she wanted to and her response was "Well, I don't think I do." When I asked why she said " Madison will be here when I get home, and church camp only happens once a year." I can see her point. If I was that age again I would probably want to stay at camp to. I don't think we will have to worry about that just yet though. We still have some time.

Countdown has begun!

Well, at 29.5 weeks pregnant we have started the countdown. Somewhere around 10.5 weeks we will welcome our daughter, Madison Mackenna, into the world. It is so hard to believe, still, that I'm pregnant.

My pregnancy has been such a mix of emotions. We have had plenty to laugh and cry about throughout the last 29 weeks. I have never experienced such an array of situations in my life. If it hadn't been for our wonderful family and friends, Monty and I would have gone crazy, well maybe not so much Monty. He has stayed so calm through everything and I could not ask for a better husband.

We have so much to do in the next 10 weeks to prepare for Madison. We have a nursery to fix, furniture to rearrange, tons of doctor's appointments, and, most importantly, a very nervous mother-to-be to calm down. Please pray for us as we prepare to welcome the newest member of the Rhea family into the world. Madison, Daddy and I can't wait to meet you!