Our first real scare

Last night was the scariest night we've had since coming to the hospital. At about 3:00pm yesterday Katelyn spiked a fever, it wasn't incredibly high, but it rapidly approached 102.6 degrees. We drew blood to culture it and check for a bacterial infection. We immediately started her on broad spectrum antibiotics, as well as some tylenol to help break the fever. Katelyn felt great a few hours later, she ate popcorn, played with Mommy & Daddy and was a happy baby. I left her room at about 11:00pm to go get some sleep in our room at the Ronald McDonald House. Todd called me at 12:15am and said I needed to get up to her room. Katelyn's fever had dropped so drastically that her body went into shock. Her body stared flexing and tensing up so much that she was completely cramped into the fetal position. She stopped breathing for a bit (not sure how long), and then started shaking, convulsing is the term that was used. After awhile the shaking slowed down and by the time I got up to her room she was shivering uncontrollably. I laid with her and kept her warm. The doctors ran tests and kept a close eye on her. It was untimately decided that she should spend the night in the Pediatric ICU. We went there at about 3:00am. Her fever broke and she was happy and awake. She slept a few hours and woke with another fever, and wouldn't stop crying for Mommy. I came to her at 8:00am. The doctors had her on an NPO (nothing by mouth) until about 12:30pm. It was horrible for Katelyn, she was begging for food. Finally they approved clear liquids, and a few hours later she could have a shake. Her first meal was when we were finally sent back to our room on the HemOnc floor. She ate hot dog, pb&j, and a few french fries. She had tylenol at 7:20am and hasn't had any since then. She hasn't had a fever since this morning. We had a relatively good day. She was very happy, once she got to put something in her stomach. We played, walked, and read a lot of books. Some of the stool samples are coming back negative for bacterial infections, and her blood culture is negative so far. Blood cultures can take 3-5 days before anything shows up. Sometimes it will show up immediately, but until we are sure that she doesn't have a bacterial infection, she will stay on the antibiotics. During her sponge bath tonight I noticed a light rash, it covered her torso and shoulders. The resident that was here this afternoon came in and said it could be the aftermath of a viral infection. He said that often times when the body, or the antibiotics, fight off a viral infection the child will get a rash. It might get prominent and darker, but it should be relieved within 24 hours. She doesn't seem to be bothered by it, and she isn't itching, so we aren't giving her benadryl. She went to bed at 8:00pm and is out like a light. She slept through labs and vitals and all the other things poeple have come into our room for. I think she'll get a good nights sleep tonight. I figure I'll try to get one as well.

I'd like to write about a cute thing that Kate did today. During her sponge bath I gave her a washcloth to wash her baby while I washed her. She was wiping the baby with the washcloth and kept telling me that the baby was "dirty". She looked up at me and took the washcloth to my face. She started wiping my face saying "dirty". I was cracking up, it was adorable. Then she puts the washcloth down and says "clean!" and kisses my nose! It was incredibly precious!

Good night, thank you for keeping us in your thoughts and prayers! Kate's website has been updated! I wrote a little something for the "About Kate" section, and the Events section has also been updated. Enjoy!

Tuesday, November 11th

What a day! Kate is feeling better. We added some more anti-nausea medicine into her daily routine and it seems to be helping a little. Yesterday she actually ate! She ate a good amount too, we were really happy about it. Today was a whole different story though, she hardly ate a thing. She's hooked up to IV fluids, so she is staying hydrated, and the scale says she hasn't lost weight, so, that is good. We've spent the last 3 or 4 days in our room as her immune system is so weak that she needs to wear a mask to leave the room. She always wants to "walk!", but would never put a mask on. This afternoon I finally convinced her to put a mask on, and once she did and we were able to walk around, she was great with it! Since then we've went on a few walks and she always asks for her mask first. She even whines for it, "mask, mask, mask", and she is absolutely adorable with a mask on! Todd and I are so proud of her! She is such an incredible little girl.

The Ronald McDonald house asked Todd and I to go speak at their First Annual Event. They are holding a Thank You event at a mansion in La Jolla. Everyone who has donated $1000 or more is invited, and we are the only family that they asked to come speak on behalf of them. We have 3-4 minutes to tell our story and explain how helpful the Ronald McDonald house has been for us. Todd was so cute tonight, we were talking about what we would say and he was nervous! Can you believe Todd is nervous about speaking in front of a crowd? He is so outgoing and personable and wonderful with groups and one on one. I am sure he will be wonderful. I'm not nervous now, but I probably will be when we are there tomorrow.

I have been feeling really good during this pregnancy. Even hanging at the hospital is tolerable. My belly has really popped in the last few weeks. People are all of the sudden noticing I am pregnant, and I really feel like I'm getting big already! I feel the baby move a lot, I think I have a happy little peanut growing inside me. Katelyn absolutely loves my belly. She always has. As soon as she could crawl and get around she would always lift my shirt so she could lay with her face on my belly. She still does it and it is one of my favorite things in the whole world. She finds my belly comforting, she goes there when she's tired or upset. It is amazing, she is amazing, and I am truly grateful that I am a mother.

http://www.welovekate.com/ is up and running! There are a few things that aren't quite up and running, but it is incredible. Look in the photo section. Fairy Tale Creations Photography (ftcphotography.com) posted some recent pictures of Katelyn and our little family and they are incredible. Go check them out!

We have so many wonderful friends and family members that are working on different benefits to ensure that Katelyn gets the treatments she needs and that Todd and I are able to focus our time and energy on our daughter. We are truly grateful, Thank you to everyone.

I know there is a breakfast in Julian on Sunday (Nov 16th), as well as a dinner on December 12th. Also there will be a Golf Tournament held at San Vicente on December 13th. There will be more information on Kate's website, and if you have any questions you can email me and I'll do my best to point you in the right direction.

tandkdevermann@yahoo.com

Thanks to everyone! We love you guys!

The nausea sets in

She's beautiful in her robe from AunTie NuTTers & UnCle Jayd!

SHe Can be so silly!


KaTelyn loVes Her Cousin Tayden!

Smile BeauTiful!

The last couple days have been tough. Katelyn is hardly eating anything. She's nauseous all the time & won't eat or drink very much. She may take a bite here and there, but not nearly enough. Last night was rough. She slept most the night but when the nurses came in to hook up her 3rd set of chemo (Ara-C), she woke up incredibly upset. The nurses already had a sterile field with sterile gloves and everything so I had to hold her hands so she would stay still. Poor girl was sick, as soon as I sat her up she started vomiting. It just broke my heart. I got her to take a sip of water and back to sleep she went. I just layed next to her for close to two hours watching her to make sure she didn't get sick again. She slept like an angel after that. It is sad to see her feel ill. She is also feeling weak. She gets little spurts of energy here and there but for the most part she wants to lounge on either Todd or I, and wants us to carry her on walks. Usually she will push her baby around in her stroller, or ride on the IV tower, or just drag us wherever she wants to go. She and Todd just got back from a walk where she towed around a little barking dog behind her. She had a burst of energy, but wanted to be held half way down the hall. As most of you know, she is as energetic as they come. She is definitely Todd's little girl, always going going going.

I made a point to sneak away today. It was my little sisters baby shower. Jeanette is 36 weeks pregnant and has the most adorable little basketball belly I've ever seen! She had a lot of wonderful friends & family there to support her and help provide for her little bundle of joy. It was great to see all of our family and was a nice distraction from the hospital.

For some reason I can't get Kate's Halloween pictures to upload. I'll try again later.

Chemo & Thanks

Katelyn is doing exceptionally well with the chemo so far. The most difficult part is being hooked up to the IV tower all the time. During the day she can go to the play room and we can go on a lot of walks. Her blood counts should start to significantly decrease in the next few days. Once they get low we will schedule private play time in the play room and she'll have to wear a mask when we leave the room. That will be interesting, she won't let us put a mask on her at all. We start chemo every day at 4pm. She gets an IV push that only takes a few minutes, then they hook up another chemo drug that runs over a 4 hour period, this drug is given every 12 hours, so she gets it at 4am as well. Every other night she is hooked up to another chemo drug after that one, the second one runs during a 6 hour period. So far we haven't had any side effects and she still has a ton of energy and is very happy. She's eating well, staying hydrated, and is just an amazing child.

Todd is incredible. There's not a single drug they give her that he doesn't look up and learn about. He knows everything she is getting, the possible side effects, and has even corrected the nurses on dosages. Kate's doctor says it's impressive, but I'm guessing they find it a bit annoying. I am very thankful for his diligence and education. He teaches me a lot and is able to make sure Kate is being taken care of to the best of their ability. He questions a lot of things, and is incredibly anal about her care (which I am as well). He want's to do all her dressing changes on her Hickman (central cathetor), because he is unhappy with the way the nurses have cared for it. I am so thankful to have him here to help look after Kate and be sure that she is being taken care of adequately. It would be difficult without him. I am anal as well, and I want the best care for Katelyn, I just don't look as deeply as he does. I need to though.

Thank you to those of you who are working on different Katelyn Projects! Everyone's efforts are incredibly appreciated and I truly don't know how to thank you. We're thankful for many reasons, mostly because your help and ambitions will help to make it possible that Katelyn gets all the treatment she needs, and the best that we can find. It may aso allow the three of us to be together and deal with this as a family. Although it is tough with Todd not working, I am incredibly grateful to be able to have him by my side during this. I don't think I could be at the hospital all the time without his support. It is great being able to care for her together and take turns resting. It would also be difficult because of this pregnancy. I need to take care of both of my children, the health of both of our children is our primary concern, so it is important to us for me to be able to rest and take care of myself. The next few months will be very trialsome and stressful, having Todd here to help care for Katelyn, and pick up some of my slack so I can focus on my health as well, is a blessing.

Again, thank you to everyone for everything. It is all incredibly appreciated!

Love,
Krystal

Here is a sneak peek at our beautiful Katelyn. Courtney's website is www.ftcphotography.com. If you click on her blog you'll see some info on Kate. She is also starting a website for us, www.welovekate.com. We hope to share some more photos with you. Thanks for checking on little Miss Kate.

Starting November

Since we've come to the hospital we have been blessed and showered with visitors. It's wonderful having people come and see our Angel and just show their support. Thank you all for coming and visiting. It's a wonderful change of atmosphere and makes the days not seem so long. This weekend we've had an abundance of family that have been here to show their love and support, and to get some time with our pride and joy. Katelyn is truly a joy and is an amazing child. A wonderful friend of ours, Courtney, came to photograph Katelyn today. A lot of you have seen her work as she did pictures of Katelyn and our family earlier this year. She captured so many wonderful pictures of Katelyn, and I cannot wait to share them with all of you. Again, thank you all for your prayers and support.

AMKL is more common in down syndrome children. There are only 40 cases of typical children who have had Kate's form of AMKL. She has a 1;22 translocation. I still have a lot of learning to do, but from what I understand it means her chromasomes have split at 1 & 22, and have re-attached to eachother. In the bone marrow sample that we got this last time they saw that 16/20 of her cells had mutated, and believe that is becasue this translocation. Hopefully we'll gain access to some of the hospitals medical websites as the information on the internet is mostly geared toward children with down syndrome and AMKL (DS-AMKL). We start chemotherapy on Monday and we don't really know what to expect. Tomorrow Courtney is coming to take some pictures of Katelyn. We want some before she's sick and losing her hair. Just keep praying for her. I believe in miracles & pray that Kate will be okay. Thank you to everyone for your love & support.