Day by Day

Since my last post a lot has happened. We have had several doctor's appointments, new bacteria to beat, the CF walk and many new accomplishments to rejoice over. Madison is doing well for the most part. She does have bronchitis and is on 2 new antibiotics for that, one inhaled (which means another breathing treatment) and one oral.

Lets start on a happy note. The Great Strides Walk in Winchester was a big success. Thanks to everyone who donated! I know times are hard for everyone right now and all donations were greatly appreciated. Team Madison raised $3322.67 and the walk raised over $36,000.00. The state of Virginia alone raised over $700,000.00 to help find a cure for this disease. A big thanks to my sister-in-law, Kelly, for starting the team, my brother Shawn and his family for letting us invade their house for a few days, and all who walked for Team Madison. My Mom, Aunt Sherry, and Kylie (who I let miss an SOL) joined me in the 6 hour drive up 81 to be a part of this. The weather was nice, Madison did great, and we had a BLAST!!

Madison has 4 teeth now with 2 more coming in. For some reason, she likes to cut two at a time. She is also jabbering up a storm. She says ma ma more than anything, but of course you know that makes me so proud. She isn't crawling yet but rolls everywhere, or scoots backward. She is also sleeping better (most nights). She is growing up so fast and I am one proud Momma!!

A month ago we were told Madison had a bacteria called stenotrophomonas maltophilia. They put her on an antibiotic that really messed with her system. We went through her refusing to eat which caused her not to gain weight for a while. She also had horrible digestive problems which made her so uncomfortable. We were hoping that the antibiotics took care of everything but it didn't.

At the last UVA appointment, Madison had grown another bacteria and still had the steno. We ended up taking her to Wytheville and Dr. Gaston had a chest x-ray done. This is when we found out she has bronchitis. He is very puzzled by everything though. The bacteria she has should not have caused bronchitis which makes him think there is more going on. We will find out more next month after she completes all the meds.

I never thought I would look up to and admire a 10 month old but I do. She shows me everyday how strong she is and what a fighter she is.

God gave us this little girl to make us stronger, not only in life but in faith. We may have road blocks to attack every now and then, but He has always helped us through the hard times and always will. I praise His name through the good and the bad because I know HE will see us through anything!

On Friday March 18, Madison had a checkup in Wytheville. Everything went great and there really isn't a lot to update. She is 17lbs 8 ounces and 25" long. They increased her enzymes because she had outgrown the other dosage. They also changed the time of one of her breathing treatments. We can also introduce a veggie. That should be interesting. I can't even get her to eat cereal, veggies may be difficult. Everyone was very pleased with how my chubby girl is doing.



Mommy getting love from her patient girl. We had to wait a little while because one of the patients had a problem. She was such a good girl the entire day.

Dr. Gaston checking Madison (notice the chubby belly). He calls her "Queen Madison." He was very impressed Friday at her weight gain and how well she eating.

Lauren and Madison after her checkup. She was telling her how proud she was of her and what a good job she is doing. She is right, Madison is doing great.




Madison has also started cutting teeth. Two teeth popped through her gum yesterday. Yes two in one day (exciting for mommy and daddy, painful for her). She is growing up so fast and doing wonderfully. Monty and I are so blessed to have her!

Long overdue update

Things have been pretty busy around here lately and I have not had time to update on Madison's health. She is doing GREAT! She is gaining weight well, eating very well, and most nights, sleeping all night long. She still has her days where things don't seem quit right, but the majority of the time she is a happy baby. Praise God!

Madison just turned 5 months old which is hard to believe. She is growing to fast and learning a lot of new things. She rolled over for the first time Monday. Of course, I didn't have the video camera nor my camera around when she did, and she hasn't done it since. She is sitting up on her own fairly well and grabbing for anything and everything she can get her hands on. Including my earrings, glasses, and and any jewelry I have on.

Last month we went to UVA and she had a great checkup. They changed slot of her meds but it has helped so much. She is now doing breathing treatments 3 times a day instead of one, but she isn't throwing up mucus like she was. That means it is thinning the mucus out which is what we want. They also started her on a new enzyme which has made a huge difference. She wasn't eating as often, until recently. She is outgrowing her dosage so when we go back, Dr. Gaston will probably increase that. They also believe that her acid reflux is not as severe now. However, CF patients usually are kept on something for acid reflux because it helps their digestion.

We go to Wytheville next week and I hope she gets a good checkup like she did last month. They may start her on rice cereal, fruits, and veggies. I just hope she does well with that, because when I give her meds to her now she spits out the apples.

I am sorry I didn't get to post any pictures but I will soon. Thank you all so much for your love, support, and prayers. I honestly believe Madison is doing as well as she is because so many people are praying for my precious little girl. Madison will continue to grow and get stronger and stronger. She is a fighter already and will continue to be.

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.