Good news and Other Stuff

I just found out some fantastic news...my sister in law is expecting baby number 2! Congratulations Ben and Shalyse. We may just have to make a trip back to North Carolina this summer to meet all the new babies!

Last Tuesday was the science fair at the boy's school. William had an experiment that he and some of the other kids in his class had done and Spencer had one that his class had done together. William was supposed to be by his experiment from 5 to 5:30. This was the same day as Bryce's birthday which made the evening a little crazy. Science fairs really aren't my thing, but my kids are, so we went to see their experiments. Luckily my Mom was in town so we left Bryce and Jacob (who had stayed home from school) with her while we went.

Spencer showing off his part of the experiment.


William explaining his experiment. It was the frozen seed experiment where they froze different types of seeds and then watched to see which ones would sprout.




Jacob had stayed home from school because he woke up with a very goopy, pinkish eye. Pink eye is going around the school, so I was guessing that was what he had. However, by mid morning his eye looked a little pink, and was itchy, but otherwise it looked fine so I didn't take him into the doctor. But by Wed. morning it was bad again and Annalise woke up with the same nasty looking eye. His went away again, but hers didn't so I called the doctor's office to see what they thought. They said it sounded like pink eye and I should bring them in. Well, since the appointment was right about the time that Bryce had therapy, my Mom took them into the doctor. It was weird because this was the first time ever that I have not taken my own kids into the doctor. It was nice that she was there to help. They did have pink eye...Jacob's was just a milder case so we got drops and began immediately putting them in their eyes. William and Spencer both ended up needing them as well. Pink eye is nasty stuff, but at least I would rather have that than lice...which is also going around the school! Yuck!

Wednesday night the Bishop came over to see us. I forgot that it was ward conference this weekend so I about freaked out when the Stake president walked through the door with the Bishop. My first thought was, "don't you dare give my husband a stake calling!" That's terrible I know, but hey, at least I'm honest! My next thought was, "man, I wish I had cleaned my house better today!" However, our wonderful Stake President made me feel much better when he reminded me that between he and the bishop, they have 17 kids and they have seen messier houses! It was actually very nice to talk with them and feel their spirit. It was good to have them in our home.

Friday we had Annalise's IFSP meeting to set some goals and plan for her therapy. These meetings are some of the worst! It is especially hard to make goals when you know she will most likely loose more skills as time goes on instead of the other way around. How do you make a goal around that? Anyway, the PT that had done Anna's evaluation was there and she did a good job of helping us to come up with some useful goals. Also, due to budget cuts, the therapy is now only partially paid for by the state. It looks like we will be covering about 25% of it. Hopefully our insurance will help with at least some of that. I have to look into all of that this week. Once I can get her into long term care, her therapies will be covered just like Bryce's are. Hopefully that will be a little easier this time around. We shall see.

Annalise will start PT within a week or so. Bryce's PT will be able to work with her as well which will be good for all of us. So, Thursday mornings will now be our Physical Therapy mornings.

She also has an appointment on Tuesday to be fitted for some supports for her ankles that will hopefully help her with her walk. It varies from day to day, but she has been having some tough walking days lately. Here is a picture of her latest bruise. She fell this time and hit the top of her eye on the treadmill a few days ago. It is looking better, but I had a lot of questions about it at church today, so I guess it is still pretty noticeable.


Here she is just being cute. Her hair is so thin. When it is wet like this, it doesn't look like she has much there, but she is getting a pretty good head full of hair.


This week has also been one filled with more blessings. Our mornings were made a little easier thanks to some frozen breakfast burritos that my friend Laurie supplied us with. They are delicious and provide a quick, yummy breakfast on those crazy mornings.

Also, John and I were able to go out on our date Friday night and we had Bryce's respite worker and two young women here to watch our kids. It was great to spend some quiet time together.

Then on Saturday was the Elder's quorum service project. Although it is a little hard on the pride to know that you have become the ward service project, it was amazing and very humbling to see so many ward members/friends come over to help us with yard work. They trimmed trees, picked fruit, dug up all the overgrown grass in the garden, moved things around, and burned what needed to be burned. The bishop's wife also brought us a huge casserole that will provide us with at least a couple of meals this week. I have a few pictures of all the work, but forgot to put them on here. I'll add them tomorrow. It was so kind of everybody to help out. I just wish I had gotten some hot dogs or something that everyone could have roasted over the fire. I need to think of these things before our yard is full of people next time! I'm not very good at this kind of thing.

Bryce's Birthday Party

Tuesday evening we had a little family party for Bryce. We had a science fair at the boys school that evening, so we started Bryce's party a little later than we would have liked. Also, Basha's pizza kitchen was down, so we had to go with plan B...buy a take and bake pizza and cook it ourselves! So while the pizza was cooking, we feed Bryce his dinner and let him open his presents.

First present...a Toy Story 3 book from Grandma. Toy Story and books are two of Bryce's favorite things.


The older boys enjoyed helping Bryce open his presents.












After presents, we had pizza for dinner. Pizza was Bryce's choice. It is one thing that Bryce will still occasionally try to eat. I offered him some on his birthday and he took two small bites and seemed to really enjoy them.




Everyone else of course enjoyed the pizza as well!




While everyone finished up their dinner, the kids took turns playing with Bryce.




Then came the cake. There was a Buzz Lightyear on the cake and he was very excited when he saw that.




Bryce loved having the candles lit. His favorite part of the whole night seemed to be when we would sing Happy Birthday to him. We ended up singing it 5 or 6 times before the night was over. Each time, he would get so excited! It is great to see him so happy.








Annalise kept trying to touch the lit candles and was very upset when we finally took her away from the cake.


So, like I said, Bryce loved it when his candles were glowing...


however, when we blew them out after singing to him, he was not happy at all. Take a look at that face. He totally looked ticked about us blowing out the candles and kept looking at the cake and then up at me as if to say, "what did you do that for?"


He just looked so sad about the candles going out,


that we decided to light them again and sing one more time! There's our happy birthday boy!


We did finally blow the candles out for good and everyone had some cake and ice-cream. Well, everyone but Bryce. I offered him some of the cake, and he started to gag before it even got to his mouth. I guess cake was just not worth the effort like the pizza was. Bryce seemed to have a great time at his party. I sure hope he did. The rest of us did and we look forward to celebrating birthday number 5 next year!

He is 4!

Our Big boy Bryce has made it to 4 years old. That is a great accomplishment considering a little over 2 years ago, many doctors and therapists did not know if he would make it to his second birthday. We are so glad he did and that he continues to be with us here today. It is truly a day to celebrate!

Jan 26, 2007


A peak through his first year.












Jan 25, 2008 Age 1






Jan 25, 2009 Age 2




Jan. 25, 2010 Age 3




Jan. 25, 2011 Age 4 Happy birthday Bryce!

Sunday Again, Already?!

I can't believe it is Sunday again. The days are flying by! This week was a little less crazy then last week, but we still seemed to keep busy all week. I'm really tired tonight, so I'll just hit the highlights.

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!