Still Fighting Strong!

(This was the day Koen moved from the ICU to the Oncology floor. As you can tell everyday he looks better! Notice how skinny his little arms are!)

Koen is out of the ICU. He was moved onto the oncology floor on Wednesday! It is nice to know he's out of the ICU because it means he has to be doing a little better. There is still a lot of worry, pain, and very little sleep. We figured out what was causing all of his gas pain. He was on a milk based formula which he is allergic to. This makes me kind of upset because before they even started him on the feeding tube the nutritionist had spoke to me and asked if Koen was allergic to anything. I let her know that we believed he was allergic to milk but we had not taken him to the doctor for the test. We did perform a muscle test on him that confirmed he was allergic to milk. But the nutritionist didn't think it was an accurate test and decided to put him on the milk based formula anyway. (Without making sure it was okay with us!) When we first realized he was having all the gas/stomach pain we thought it was from Koen not having a bowel movement. He did have a bowel movement and was still in a lot of pain so Mama Bear had to do some fighting to get his formula changed. What's even worse was he had been on the milk based formula for 10 days which caused him to lose more weight then he needed to. Koen has lost so much weight it is scary! Since then he has handled his rice based formula just fine and is up to the amount of feedings the doctors were wanting him to get to. Which means he is getting 1200 calories a day!

(The wagon ride, Kaitin held his hand the whole time!)

The day after Koen was moved to the oncology floor his was able to go on a wagon ride and totally felt up to it. He is so tired of being in a hospital bed!
We also made a stop in the playroom! It was good for him to get out. Going out didn't last long, that very night he started spiking fevers and has been isolated to his room ever since. The doctors believe he's only spiking fevers because of the tumor. But as long as he's having fevers it is to dangerous for him to be out in the hospital because of all the other sick kiddos here. It has been hard for him! With the fevers it has also brought a lot of throwing up and discomfort. Nobody feels good with a fever. Also, he is still experiencing pain form his tumor, chemo pain, and bed pain. This is causing my poor baby to not sleep well, which has caused Grant and I not to get much sleep either. Grant and I were switching off days because Kaitin and Gavin were missing us so much. It now takes both of us to get through the nights. Once again Mama Bear had to have a word with the doctors and nurses. In my opinion Koen sleeping is just as important as his blood pressure. Every time his fever spikes they have to take blood cultures to make sure it doesn't grow bacteria. He has also been having loose stools which baffles the doctors.

(Picture before his haircut, they both weren't thrilled about having to cut his hair off! It is much better short because of having fevers makes him sweat so bad. Also, when he starts to lose his hair it won't be so bad!)

The doctors were thinking Koen could possibly go home as soon as Monday(today) but as long as the fevers and loose stools continue, he won't be able to leave. Also, we have been having trouble finding a pain medicine that works and last longer than an hour and a half. Please pray that all these things will get figured out and that Koen won't be in pain anymore. Also, that he is able to go home. He longs for the day when he can leave this place! Every time Mommy, Daddy, Kaitin, or Gavin leave he just cries and cries. The other day when my Mom was here we went out to lunch so when I told him goodbye he was sad and cried. Not long after we left he said he was hungry. My guess is he was hoping it would mean he could go too.

(It is so cute when Kaitn comes to visit and yet so sad. He misses his brother so much! Kaitin seeing his buddy, best friend, and brother go through this is so hard on him. It thrills Kaitin when he comes and Koen does something new everyday for him from holding his hand, to just saying a few words to him, or smiling. They're so cute together!)

Please keep the prayers coming for:

*Pain Relief

*No Fevers

*No Loose Bowels

*Chemo on Thursday
*Sleep

*Most of all "HEALING"

Thank You to all of you for your prayers and thoughts, it means SO much to us!~Koen's Mommy