I know I know. It has been a few days since we have been back from our trip to Halifax and it is taking me a while to update Katlyn's blog. Well, I'm happy to announce the reason for my tardiness is because Katlyn and I having been spending most of our time outside. The weather has been just absolutely beautiful and so we have been taking full advantage of it. Katlyn has been flying her kite as well as playing with her chalk and on her bicycle. She enjoys walking with her father to work and stopping to take in just about everything along the way. I know that most two-year-old children are very curious anyway, but with Katlyn's isolation I think she is even more curious of the world around her. She literally asks about everything at least 12 times. I love it. I have longed for the day when my little girl would be able to walk along and ask me what things are and be able to pick up sticks and rocks. It does sadden me that Katlyn is still not able to play with children and we can't go to the park and stuff like that, but I try my best not to focus on that stuff. Instead, I try to focus on what we are able to do now compared to last year. Last year, she was not even allowed outside and now we are spending most of our time out there.
So about the trip. This time Johnathan had to work so I took Katlyn on the long trip alone. We thought it would be a good idea to break up the trip by stopping Moncton before landing in Halifax. I don't really care for driving at night, especially with all the animals. So I set off on Tuesday to Moncton, stayed the night at the Colonial Inn and set off early Wednesday morning for Katlyn's IVIG in Halifax. It was about 3 hours away and we made it on time for her appointment. Mind you, I have never driven to Halifax before in my life. I did very good though. I actually feel quite a bit more confident about it now and I think I will take up driving the trip more often now. My mother works at the Colonial Inn and we are forever grateful to my mother who spent all the time she did getting Katlyn's room ready. The room was in tip top shape by the time we got there and we brought one of Katlyn's HEPA machines for safety. The manager of the Colonial is an angel. Anita, I cannot thank you enough. You are a great person and you helped us so much. Thank you!!!!!!! As well I would like to thank the rest of the staff at the Colonial for making our stay so great. You guys really make a person feel welcome!
So on Wednesday my mother came with Katlyn and I to Halifax. It went very smoothly. While we were there Katlyn got her routine blood work done, neautrophils 1100 and lymphocytes 100. She then got her IVIG infusion most of the day with no complications. During that time we met with a dermatologist who let us know that the tumor board at NIH did meet and they came to the decision that more information was need about these tumors. So anyway, there is talk about getting another biopsy. The dermatologist made a great point. She thinks that instead of just getting a sample biopsy, we should just take one. That way we will not have to worry about such tumor anymore. I like this idea because the tumors are not that big anyway, and I think it would be less of a hassel to just remove the whole thing. The type of surgery that may be used to remove a tumor is called Mohs surgery which decreases the chance of recurrence with these tumors. The lucky thing is we have a Mohs surgen in Saint John, which is only a couple of hours drive away. YAY!!!!!!!!! So we'll have to wait and see overall what they all decide.
Besides that, we had kind of been forced to wait five weeks for Katlyn to get her IVIG this time. All her levels came back fine, and if they did I knew this meant we could probably wait 5 weeks and instead of four before giving it to her again. I had been talking with Katlyn docotr this morning and he mentioned we may even wait six weeks. This is great news and I am very excited. So anyway I better go because Katlyn is having her lunch and then we are once again heading for the great outdoors.
Thanks a lot again to the Colonial Inn. I just love it there.
