infusion #7/soccer

Sorry this entry has been so long in the making, but I wanted to wait until I had the cognitive results from Eastons end of study testing. I talked with the nurse today and the Dr. still hasn't written up the report. So we are just going to update with what we've seen. from what I have seen, during the testing Easton was more task oriented and stayed on task a lot better than what I had seen before. The Dr. conducting the test also said that she could see a big difference in his attention span and the desire to do the task she asked him to do.

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This summer well fallish we signed Easton up for soccer on our local team this is something I never thought we would do because there was such an age gap between him and the other kids his age. It was just getting to the point were the other kids were starting to notice that Easton was different and that he talked different. But he has recently made such big gains that those aren't so noticeable anymore and so we decided to put him on the team. All of his teammates have been really friendly. He has also learned a lot about taking turns, sharing, and just the overall rules. He is totally on the same wave length as the other 4 year olds on the team. He loves being on the team he kicks the ball well and when I tell him some advice like kick the ball the other direction he listens and is able to turn it around he gets the whole concept of the game he has even made a couple of goals. Which end up with a yeah baby high five and just that total look of accomplishment. Even when the team misses he realizes they missed or went out of bounds and gives the whole ohhhh maybe next time, or if the ball goes out he's right there with the other kids tackling the ball and doggy piling the player on the bottom. To some of you this may seem like a small thing but to me it is wonderful everyday I see him do something new and more age appropriate than the day before and I marvel at how lucky I am to be blessed with the knowledge I have about hunters and the place in the world I live. I know if I were in a different part of the world he wouldn't be doing this well, but I, little ol' me has been blessed to know of Dr.s and specialist that are helping him to have a better life. Now I know that no one knows how well this drug is working yet or how long it will last but I know that it has helped him for now and all I can do is pray that it continues to help him and others in the future. Don't get me wrong going back East for the last year has been a real challenge for me and my family. But we are almost there, pretty soon we'll start receiving infusions at our local site and then continue to go back every 6 months for some testing. So that feels totally doable compared to what we've doing and if you only knew how many times I questioned if I could do this or if my family could handle and to be able to look back and realize that I did this extremely hard thing and it has been worth it is almost overwhelming to me I never thought I would make it or that my other kids would tolerate it as well as they have. My entire family has been wonderful through this whole experience. With any luck we will only need to go back for 2 more infusions I marvel at how fast this year went by.

On another note a funny thing that Easton said the last time we were back East. I had these book of crossword puzzles and he asked if he could read them so I said yes and handed him the pen. When the nurse walked in she asked him if he was reading his crossword puzzles he replies no I'm reading my scriptures it was so funny. The nurses didn't quite get it. But back home we had set a goal to try and read scriptures with the kids everyday through the summer so I guess he thought he needed to be in on it.

Today I have also been missing my Nathan so badly that I almost can't stand it every once and a while it will hit you and you just long to see them and hold them. I often wonder what he is doing and if he is upset that I miss him so bad. I wouldn't ever want him to see me miss him so much so I try to keep going and most days I do fine but days like today when I start thinking of our families upcoming Deer camp excursion which was one of Nathans favorite camping trips it makes you feel really homesick for him.

We also have Weston in soccer he is such a natural at this. The first game I went to he did a backwards kick and saved the team from getting a goal against them. It was awesome, and one of those times that you wished that you had a camera because you know you won't see a move like that again. Weston has a natural knack for any sport he tries. It's because he takes after me hahaha.

Camille is in drivers ed which she called the most boring class on the face of the earth. She also is taking a dance class at school which she loves so much she has often said that she wishes she could take dance for every class. Plus so far she has a 4.0 woo hoo.,

Kaylee has really grown up over the summer she's trying to learn a song from the phantom of the opera to sing for the school talent show. I asked her to sing it in front of me and she told me No she would be to embarrassed so I asked her how did she ever expect to be able to sing in front of the whole school? She told me flat out that they are easier to sing in front of than me. "Whatever" she really has a good voice and with a little confidence she could be really good. Now if we could get her over her shyness. I hope that this blog has helped keep everyone informed with Easton progress if not at least I will be able to look back at it.