First of all, today is my Dad's birthday. Happy Birthday, Dad! We called and sang to his answering machine tonight. He must be out partying it up!
Monday was Martin Luther King Jr. Day (that seems so long ago), and the boys had the day off of school. John had to work, so the boys and I loaded the bikes and scooters into the van and headed for the park. We had a good time. We stayed for about 2 hours. It was nice for the boys to have some paved area to ride on. That is one thing about out here, it's all dirt, rocks, and pot holes which can be fun for boys, but sometimes it's nice to have some even surface to ride on as well. Spencer still struggles with riding a bike, so I wanted to see if the surface made a difference. It did, indeed! He still got tired pretty quickly, but at least he was able to ride some and enjoy it. Annalise enjoyed walking around and helping me push Bryce in his wheelchair. While we were there, Bryce had what appeared to be a small seizure similar to what his bus driver had observed while he was on the bus on Friday. His tests for seizures have all come back negative, but after these two incidences, I figured I should at least let his neurologist know. He had me describe what I saw and said that we should have another EEG done just to check, so that will be coming up in the near future, I'm sure.
After the park, I was going to take the boys to buy new shoes since their toes are showing through their current ones, but Bryce was really cranky by this point and I just couldn't bring myself to take all 5 kids to Walmart. So we headed home for lunch, naps, and speech therapy. I never did get back out to get the boys shoes. Oh well, maybe this week!
Tuesday the boys went back to school. The morning was rough and once I sent them off, I missed them so much. I just hate sending my boys off after such a lousy morning. I couldn't wait until they were home again and I could try again to make our home a happy, safe place for them.
A couple of cool things happened on Tuesday. That morning I got a phone call from a man named Stephen who lives in Melbourne, Australia. He has a two and a half year old son who has been diagnosed with unspecified Leukodystrophy. He had seen a post about Bryce and Annalise and the entire genome sequencing that we are working on having done and wanted to talk with me about it. They had the testing done on their son back in June of 2010 and he was the 40th person in the world to have this, so it really is a new procedure. He said that he would keep in touch and let me know once they find out anything.
Then that evening I got a call from a lady who lives in Gilbert whose 16 month old son, Ryder, was recently diagnosed with Unspecified Leukodystrophy. It was interesting to talk with her about the similarities and differences between our boys conditions. It was also great to compare notes on who we are seeing and realize that we see the same geneticist and GI doctor and that in March when her son sees a neurologist, he will be seeing Dr. Narayanan. He is the best we have found so far, so I think she will like working with him. We hope to get together soon to meet each other in person.
Thursday morning we met Tess, Bryce's new PT for the first time. 10 minutes before she was supposed to get here, I got a call from the school saying that Spencer had an accident and I needed to go get him cleaned up. Luckily my sister was here, I don't know what I would have done if she wasn't, so I left to quickly take care of things at school and Sheri met the new PT until I could get back. Since Spencer had an appointment later that day, I just ended up taking him out of school then for the day. We made it home for about the last 15 minutes of Bryce's therapy. From what I can tell, Tess is going to work out very well! After therapy, Spencer and I headed off to Phoenix for his appointment. We ended up spending most of the afternoon there.
Friday morning I took Annalise with me to go get some lab work done. Everyone thought she was just adorable. It's so fun going places with her, even if it is to have blood taken!
Saturday morning I got an email from Will Perkins telling us that he has found a time and place for the Benefit concert. I don't remember if I have written about this yet on here or not, but basically, Will is a senior in High School. He is in my parents ward in California. As his senior project, he has decided to use his talents of playing Ragtime music on the piano, and put on a benefit concert to raise money for someone in need. He heard about Bryce through a friend of my Mom's in her ward and he has decided to do the concert for Bryce and our family. The money that he raises will go toward the genetic testing that we will be doing. The concert will be on the 25th of February. If anyone who reads this lives anywhere near Modesto, CA. or knows someone who does, let me know and I will give you the details of the concert. Will's talent is amazing and I'm sure the concert will be fantastic. We are planning on driving out so that we can be there that night and meet some of the wonderful people who will be there. It will also be nice to meet Will and thank him personally!
Saturday night we went over to our friends the Rapier's home to play games. The Walkers and the Burks were there as well. We had so much fun. I haven't laughed that hard in a long time. It was great to have a night out without the little ones. Thanks to the Bishop for suggesting it and the Young Women for taking it on, John and I have babysitters for date nights set up for the next two and a half months! That is huge when you consider that we only went out 5 or 6 times total last year! This will be a very welcome change. Now we just have to think of some fun dating things to do!
Here are a few random pictures that I took this week.
Monday afternoon, I was in the middle of something and the older boys were watching something on TV that the little ones were not interested in. That becomes a problem sometimes because we only have 1 television. Luckily Bryce's communication device also works as a computer and we are able to get Netflix on it. Here are Bryce and Annalise enjoying Blue's Clues on Bryce's computer.
The boys have found many uses for Annalise's hairbands. Luckily I bought a bunch of these for $1. They made for some cheap entertainment for the boys!
Annalise wearing her new helmet. Luckily, she doesn't seem to mind it. I feel much better letting her walk around and play outside with it on. She still falls a lot, but at least she is no longer getting big goose eggs on her head multiple times a day.
She is still going strong. A support coordinator and PT will come out this Thursday to set up her IFSP so that we can start Physical therapy. I swear though, she is one determined little girl. It seems like since she has had a harder time with walking, she is more determined than ever to walk and climb any time that she can. Hopefully she will just keep walking for a very long time!
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