Thursday, April 9, 2015

Day +219

Day +219 know it's been awhile since I've updated but that is because Katlyn has been feeling a little better each day. With each days come a little more energy to do things and keep us busy. I have also been doing some fundraising to raise money for an important medication for Katlyn. Katlyn's doctor has approval from health Canada to try a drug not commercially available in Canada, but has worked to fight norovirus. Because Katlyn has not tcells to fight norovirus on her own, this is what is causing her so many problems. We did have a check up this week at the IWK. They were very happy with Katlyn's progression. We have been given the green light to try so ng feeds for two weeks, and if all goes well, we will be taking her tube out. She is so excited about this, as the ng tube causes so much fear and anxiety for Katlyn. She does so well tolerating so many invasive procedures, but the ng tube has to be inserted through her nose into her stomach, and she hates it. I cannot say I blame her. Our girl has been put through so much, and everyone has a breaking point. Hopefully good news soon. Also, Katlyn has been receiving sub q injection twice a day and next week we are going to try and take one of the injections away. Since there is no food pumping through her stomach through the night, and her gut gets to actually rest, its possible she might tolerate it. I pray she does. Her poor little arms are so sore, tender and all bruised from the injections. It looks like we will be starting the medication to hopefully fight the norovirus in a couple of weeks. I have told the pharmacy to go ahead and order the first month. The province or insurance are not covering the cost of this medication, but thankfully our great friends and family have pulled through and so far we have almost raised enough for 2 months of medication. Thanks so much for all your support. It is so heartwarming and overwhelming. When Katlyn starts this medication, she will need to be hospitalized at the IWK for some close observation for a few days. Since this is not a drug approved for use in Canada, except for in our special case, they want to document the safety and hopefully the proof it clears the virus. Katlyn's newest chimerism test is still 100%, which is amazing. All of her cells are all donor and keep showing us the same results over and over again. We are still waiting on her slowpoke tcells. These tcells are so important. They will allow Katlyn to live a normal healthy life. Also Katlyn's hemoglobin has been low. Her blood work also shows that her iron is low as well. So she has been put on a high dose of iron supplement to treat her anemia. She has tons of energy even though she probably is quite tired. I think its because in comparison to how she felt before, she is feeling great. I cannot only imagine how amazing she will feel when we get the anemia under control. Please continue to pray for our little girl. She is going to get through all this and be strong and healthy. We need all the support we can get right now. Anyone wanting to donate to Katlyn's medical fund: