I'm Back

Hey everyone. I don't know what happened but I kinda lost focus with this. A lot has been happening since I last posted so I will just give a quick update. Jaylee's hair is coming back thick and DARK and I think a little curly too. We were able to go home a couple of times but have had to come back for some issues. The first time we spent 2 1/2 weeks in the PICU and Jaylee had to have a CPAP on to help her breath. It was pretty scary. Then we went home for 2 weeks and are now back in for her belly and the Adenovirus that she has had since the beginning. We are still doing great and are grateful for all the prayers you are sending our way!

New Post

Hey there everyone! So there are a few new updates since last post. First off Jaylee is doing much better. We are still trying to figure out a couple of things such as getting her to eat her food without throwing up and also still trying to figure out why her platelets are not staying up. They have done a couple of Biopsies to look at her stomach and intestines to see what is going on. As far as they can tell she has a little bit of Graft Vs Host disease on her lower intestines and that is causing her stomach to get red and inflamed therefore making her throw up her food. They started her on a steroid to help with the GVH and they are hoping it will also help with her platelets which they are still trying to figure out why it is taking so long to get better. We also were moved to a bigger room and it has been really nice! The bathroom is 2 times bigger than the last room and it has a much better view. The doctors are also saying that we MIGHT be getting out this week, but we are to the point were we will believe it when we see it. Anyway please keep us in your prayers. They help us so much!! Love you all!!

Jaylee's Birthday!

So we had Jaylee's First birthday last week!! Considering where we had to spend it, we still had alot of fun! Grandma and Grandpa Stauffer were able to come up and celebrate with us too. One of the best things about the day, was Jaylee's doctors let us take her outside!! She had not been outside in almost two months! The day was a little overcast, but it was nice because then it didn't hurt her eyes. She loved it!! I think it was good for all of us to get out for a little bit.

So now we try to take a walk outside, or in the halls even, everyday. It makes a world of difference for Jaylee! She gets so bored in her room day after day. So this is a good change for her!





As far as going home, we are still waiting for her platelets to stay high enough for her to get them every other day. So we are trying to be patient with this waiting game. We have gotten to the point where we don't even want to tell us if they THINK we might be going home later in the week, we are just going to wait until they come in in the morning and tell us we are going home that day. We are tired of getting our hopes up and then it not happening.

Sorry...

I know, I know! I am a slacker! I apologize for it taking so long to give an update, and believe me there are quite a few. First off, Jaylee is doing SOOO much better! All of her mouth sores are gone and there is no longer any bleeding. Yeah!! It is so good to finally see her happy again. And she IS happy! smiling and laughing all the time. She is still bald as ever, but now has a bald companion in her dad! About a week after we shaved Jaylee's head, we also shaved Jeff's. I don't know if he totally digs it but I LOVE it! I think he looks so good. Just this last week was my first mothers day and even though we were still in the hospital it was still a very pleasant day. As far as when we are supposed to go home, we are still waiting for her platelet's to stay high enough. She is getting platelet's transfusions about every other day if not everyday. They want her to be able to keep them high enough for her to just get them three times a week before they feel ready to let us go. They also discovered a bacteria in her central line and are still waiting for the cultures to come back before they will know if they have to replace her line or not. This week seems to have been a really hard week for me. I guess I had really gotten my hopes up that we could be home for mothers day and when I found out that is was still going to be another week or so, it really got me down. I just hope and pray that we could at LEAST be home for her first birthday! It would really suck not being able to celebrate at home. We again thank you all for your prayers and support! They help us so much! Love you all!

Update

So today is day +13. It will be two weeks tomorrow that Jaylee had her transplant. So far It has been okay. Not great, just okay. After having to shave her head things were looking up. She was happy and seemingly doing well. About three days after that we noticed she started drooling alot and she wouldn't close her mouth. The next morning after telling the doctors about the drooling they took a look in her mouth and discovered she had mouth sores under her tongue and in the back of her throat. From then on she started REALLY drooling and not only was it thick and sticky but it was bloody too. I am not going to lie... it was sad. She constantly had blood running down her chin and all we could do was try keeping it wiped up. At night was the worst. It would run down her cheeks and onto her pillow case and then get all over her face. It probably took me fifteen minutes each morning trying to get all the blood off. It was really hard to see. Luckily for Jaylee, the doctors had her pretty medicated. At first I was really worried to give her so many drugs but after seeing the actual sores in her mouth, they couldn't give them to her fast enough! They looked like blisters on the bottom of her tongue and it just broke my heart! As of now, she is doing a little better. She does not bleed as much and the sores are not as noticeable. I am just amazed at how strong Jaylee is! She is such a trooper. I cant even imagine having to go thru all this and not understand why you hurt so bad or feel this sick! Everyday I am amazed at how well she copes with everything! I am also AMAZED and GRATEFUL for Jeff. He has been my rock! Solid and true! I sometimes forget that it's not just me that gets affected by Jaylee hurting. He has been an amazing support for not only me but for Jaylee as well. I want to thank him for all he does for us and tell him how much I love him! I want to say thank you to everyone and their prayers for us. They help keep us going! Love you all!

This is Jaylee before and after we shaved her head. I think she looks like a completely different baby! My aunt Kathy gave her the doll and she LOVES it!!

A Hard Day

Well today is Day +6 and after a morning of constant hair clumps, we decided to shave Jaylee's head. We first noticed it this morning when we saw how much hair was on her pillow case. Then because Jaylee likes to play with her hair we saw that she was pulling clumps of it out and then itching her eyes with it, which then led to more itching. After the decision was made, I had a bit of a break down. It seemed like it was all crashing home to us just how sick she really is. Jeff took the initiative and started to shave her head first. About halfway thru, it really got to him and he started crying, which in turn made me cry even harder! Once I calmed down a bit, I took the opportunity to finish the job. It only took about ten minutes to get it all done and she did really good. She looks a little bit like a boy but is still the most BEAUTIFUL girl ever! Unfortunately for some reason the video camera did not record the process and so we don't have any video to keep! I am totally bummed about it too!! We DID keep all of her hair though! Anyway It was definitely a traumatic morning for us all! Love you all!

Here are a couple more from the transplant day!