And the beat goes on...

Hello to all. Sorry to have left you all hanging for a couple of days with no word from us. Having Avery at the house has been great but keeping us all busy. She is still quite uncomfortable for big chunks of time...and we share the computer here with a house full of people. That has made it a bit more difficult to get to the computer at a time when I actually have the chance and it is free. Well, as I mentioned, Avery is here at the house and doing OK. She does have a new hairdo thoough! I call her my little Sinead O'Conner now. We found some electric clippers here at the house and shaved the long side down to about 1/2 inch so it is more even with the left side. She is still pretty of course! It actually looks so much better. Who looks good with half a head of hair? Crazy surgeons! I'll post pics as soon as I can. She is still having periods of uncomfortableness throughout the day, and at night sometimes too. Aside from the night before last, she has slept fairly well through most of the nights here. I think she is making some slow improvements each day. So, hopefully we will get back to her "new old self" before too long. We changed her formula to a soy-based type yesterday thinking that it couldn't hurt and that it might help. I'm not sure if it is making things better yet or not...we probably need at least another day to determine that. The diarrhea seems to have slowed down today though...so maybe it has made a difference. I also started giving her Tylenol again yesterday evening because I think she is cutting two back molars, which can be very painful. Actually, I know she is cutting at least 8 teeth right now...but I'm not sure that there are not a couple more starting to make there way in as well. Some are a good ways through, others are just erupting or about to break the surface. Nothing like getting them all at once! She had not a single tooth at 12 months of age. We definitely have to get back to the dentist when we get home. Dr. Farthing will be quite surprised! We all continue to do well. Caiden is enjoying having us all at the house all day. He got to go trick-or-treating on Monday in a little neighborhood here in Baltimore. Jon and I took him to the Canton area based on a house staff person's suggestion. It was really fun and he made a great Harry Potter. Everyone kept commenting on his oufit as he trick or treated and kids would walk by and say, "hey, its Harry Potter". We had several poeple say it was the best costume they had seen all night...that made his night! He had so much fun and so did we. We put Avery in Caiden's lion costume from a couple years ago (the one my Mom had made)and she looked so cute. We couldn't leave her in it long though because it was too hot. It had been 70 degrees that day here. We took lots of pics of course that I will also post as soon as I can. We keep hoping that Avery will improve enough in the next day or two to allow us all to get out of the house and go do something fun. There is certainly plenty to do around here...hopefully that will work out before we have to head home. In any event, it won't be the last time we are here. We have to come back in about 5 weeks to see Dr. Jallo for a follow-up. We will also be back in March or April to see Dr. Kossoff for a follow-up. So, Baltimore will be in our plans for many months, and years to come. I'm not sure if I mentioned before that we had a visit from two pastors last week. One is a pastor in Virginia that used to be the pastor at Mom and Dad Paauwe's church in Florida (Trinity Presbyterian) and the other is a pastor here in Maryland. It was really great to have them stop in and talk to us. The pastor from Maryland is actually the father of a girl who had a hemispherectomy. She had the hemispherectomy here at Hopkins when she was 7 years old. She had had a stroke in utero and had a lot of seizures until the surgery. She is doing really well now. Actually, I'm sure that we met her at the reunion back in July. Anyway, it was so great to have his perspective on things as a parent, a father, and a pastor all tied into one. He offered a lot to us and we hope to get to meet his wife and daughter and son before we leave here. It is so great to have the resource of other parents who have traveled this road before us. We have missed Ms. Jackie, Darby and Finn for a couple weeks, but are hopeful that we will get to meet up with them before we leave. They have not been able to be here on the Wednesday that they normally come to do crafts with the children in the house. They have been so wonderful to us and we want them all to meet Avery. We hear that Darby has a truck load of stuff to give Avery. We can't wait to see it all. Hopefully, as Avery starts to improve, we can finalize our plans to get home. If she does well, the next couple days we may be able to get out of here on Monday morning (if Dr. Kossoff doesn't think he needs to see Avery in person in clinic on Monday). Otherwise, we may stick it out until Tuesday or Wednesday. We are all ready to get home...we are really missing everyone! But, we know that the drive will be very long if Avery is upset the whole time. We pray that she will be better by the time we HAVE to leave, if not earlier. We'll see. In any case, we will have to have an "open house" when we get back so that everyone can stop in and see Avery and Caiden. I know that everyone has been missing them! Well, I think that is about it from here. We keep praying that Avery continues to improve every day and that the you-know-whats stay away. We thank you all so much for being a part of this journey, for supporting us and caring for us. We are so very grateful. We can't say that enough, yet, it seems too little for the mountain of support we have received. Just know that you have touched us deeply and helped us in ways you may not even realize. Love, Holly