Well, the first day of homeschooling went very well. The only problem was that the 4 hours worth of work that we had for Spencer was completed within about 1 and a half hours! He also kept saying, "Easy! Easy Cheesy!" so Mom is out working right now to find something a little more challenging for him. Obviously academics is not the problem! The boy is one smart cookie! The big success of the day...he stayed dry from morning till night. Yippee! It's been a long time since we have seen that happen, so that was nice! It was so great that the couple of times when he said he just wanted to snuggle with me, he was able to do that. He would come over for a quick snuggle and then head right back to his work. It was really great working with him today. I'm sure that things will get a little more challenging when the excitement and newness wears off a little bit, but for now, we are all loving this. It makes me wish it were possible to home school all of my children!
William had a very tough time going back to school today. He just feels so overwhelmed with everything he has going on. Other than Cub Scouts, we aren't even doing any extra activities. It just seems like on school days the time is taken up with school work, homework, and chores. He was in a better mood after school today since his teacher did not give them homework for today. That was nice. William is in some pain after shutting his hand in the van door tonight after Cub Scouts. It doesn't look broken, but it sure is swollen and I'm sure it will be painful for a few days. Poor kid!
Jacob is Jacob! He did just fine going back to school today, loved seeing his friends and complained all the way through his homework. What should have taken him about 2 minutes to complete took about 20, but hey that's just the way he does it. I just love how each child has there own little personality and way of doing things.
As long as Bryce does well through the night tonight, he will be going back to school tomorrow. I'm actually excited for him since he hasn't been in almost a month and a half. I know I will worry about him while he is away, but I think that he will be very excited to get back. Hopefully he will stay well and continue being able to go throughout the rest of the year.
Annalise did a great job with her speech/feeding therapist today. She is still saying quite a few words and continuing to learn new ones which is really good for now. We are also working on teaching her sign language which she is picking up really well. It's a lot of fun to see it begin to click with her. We have found these really great signing videos called Signing time. They are very catchy and I have been able to pick up a lot of signs really quickly which helps in using them with Annalise. The off-the-wall cool thing about them is that they are directed by a girl who served in my mission. Her husband also served with us and their son is in the videos. We weren't close or anything and I haven't talked to them since the mission, but it was kind of fun to see that.
Well, the day has been a good, long one and tomorrow will be another so I am off to bed! Good night!
Tuesday, March 29, 2011
Monday, March 28, 2011
A New Adventure
Spring Break has come to an end and the boys will return to school tomorrow. It always makes me a little sad to see these breaks end, especially ones that have been as great as this one has. I just love having my kids around me.
Tomorrow will also be the start of a new adventure. I have withdrawn Spencer from school and will be homeschooling him for the rest of the year. I had planned to do the online school, Arizona Virtual Academy, but things got messed up a bit and we were too late to start that now. Personally, I think that may be a blessing in disguise. Anyway, so my wonderful mom (who used to teach first grade) has put together some school things for him and we will start tomorrow doing something else that I never thought I would do. Hopefully by doing this, we will be able to address some of the emotional and physical challenges he is having right now and possibly by next year he will be ready to return to school. We'll just see how it goes and cross that bridge when we come to it. I'm actually looking forward to spending some extra time with Spencer. I think it will be good. Wish us luck!
Tomorrow will also be the start of a new adventure. I have withdrawn Spencer from school and will be homeschooling him for the rest of the year. I had planned to do the online school, Arizona Virtual Academy, but things got messed up a bit and we were too late to start that now. Personally, I think that may be a blessing in disguise. Anyway, so my wonderful mom (who used to teach first grade) has put together some school things for him and we will start tomorrow doing something else that I never thought I would do. Hopefully by doing this, we will be able to address some of the emotional and physical challenges he is having right now and possibly by next year he will be ready to return to school. We'll just see how it goes and cross that bridge when we come to it. I'm actually looking forward to spending some extra time with Spencer. I think it will be good. Wish us luck!
Sunday, March 27, 2011
Birthday Party
Last Friday William had his birthday party. We had it a week early because there is just too much going on the weekend of his birthday and the following weeks. He decided that if he was going to get one, that it better be now. This year he decided to only invite friends from church. That worked out really well since we were on Spring break when we decided to have it.
William has really gotten into Legos lately and decided to have a Lego party. We made Lego invitations and looked for a bunch of used legos. The ones I could find were way too expensive. Thankfully my friend Dacia came through for us. Her daughter decided that she would part with her Legos and they gave them to us. The Legos were the hit of the party. Thank you so much Dacia and Daughter!
We started with some free time as the guests arrived. I was glad William invited a few girls, they really helped with Annalise.
Then we played some games. The hit of the party was Lego Pictionary where we split the kids into teams and a player from each team came up, saw a word, and then had to build that with Legos. It was fun to watch the kids create as the others tried to figure out what it was.
Then as we were getting dinner ready the kids spent some time just building with Legos. Again, thank you, thank you, thank you Dacia for the Legos. They were a lifesaver!
Annalise seemed to think that she needed a ride whenever someone else had one. Luckily the kids didn't seem to mind having her along.
Can you tell what the cake is? It is a lego! William does not like frosting, so he did not want frosting on his cake. So, I turned a white cake into a green one and used these in between sized, colored marshmallows that I found at the dollar store to create a lego. Ok, so you have to use your imagination to see what it is, but William liked it and the kids were able to tell what it was, so it's all good!
Since William has decided that he doesn't like pinatas anymore, we did not have one this year and no one seemed to miss it. As William went to bed that night he claimed that this was the best birthday party ever.
Thursday, March 17, 2011
PT and Long Term Care
Today Bryce and Annalise had physical therapy. Tess (their PT) was very surprised at how much Annalise has changed since just last Friday. She has decided to cancel the order for the walker since by the time it gets here, she will not be able to use it. Tess is ordering a gait trainer like Bryce's (only smaller) instead. She also thinks that we should work on getting a wheelchair for her soon since although she is still small now, we know we will need it in the near future and it seems to take so long to get things through the system.
Good news today was that I heard from the long term care people. They are going to be setting up a time for someone to come out and do a medical evaluation on Annalise to see if she qualifies for long term care. It usually takes 2-3 months for this process. I'm hoping that the whole process runs smoother than it did with Bryce and that she qualifies the first time through. I think that she will since Bryce is already in the system and she already has the same diagnosis. This will really help with the costs of her therapies (which can run up to $70 for each hour session) and equipment that she will be needing in the upcoming months.
Thank you all for the prayers. If you can please add our oldest son, William to your prayers as he seems to be really struggling with everything that is going on with his baby sister right now. Thank you!
Good news today was that I heard from the long term care people. They are going to be setting up a time for someone to come out and do a medical evaluation on Annalise to see if she qualifies for long term care. It usually takes 2-3 months for this process. I'm hoping that the whole process runs smoother than it did with Bryce and that she qualifies the first time through. I think that she will since Bryce is already in the system and she already has the same diagnosis. This will really help with the costs of her therapies (which can run up to $70 for each hour session) and equipment that she will be needing in the upcoming months.
Thank you all for the prayers. If you can please add our oldest son, William to your prayers as he seems to be really struggling with everything that is going on with his baby sister right now. Thank you!
Wednesday, March 16, 2011
Regression Continues
I wish this was going to be a better post, but I need to document what is happening at this time not only as part of my journal, but to possibly use in the future as we try to piece together this horrible disease that our children have. As of this week, Annalise is almost completely unable to walk without holding onto someone or something. She crawls most of the time. She has also lost the ability to roll over when lying on her back. Today when she was lying on her back she was unable to move from that position. She tried multiple times, then put her head down and just kept saying, "I stuck, I stuck". Very sad to see. When this all began with her, I predicted (due to Bryce's timeline) that we would have until April or early May until the rapid regression part of this nightmare would begin, but by looking at this week, it appears that it may be sooner than I thought. This week has been harsh!
Wednesday, March 9, 2011
Our Little Model
Today we had a great opportunity with Bryce. It all began a little over a week ago when we got an email from one of our OT friends that we work with, Anthon McLaws. He said that he had an OT friend who was looking for a child wheelchair model for a local company that sells mobility equipment. He asked if we might be interested and if he could send our info on to them and see if they would like to use Bryce. We decided that might be fun to try and told him sure. A couple days later, I got an email from a lady at Vantage Mobility (VMI) asking if I would send a couple of pictures of Bryce. I did and 2 hours later I got an email back asking if we could do a photo shoot this week with him. They offered to pay him $100 for about an hours worth of time. I asked a few more questions about it and agreed to meet them today. I was just keeping my fingers crossed that he would be well and smiling again. Luckily he was and he completed his first job today. It actually took about 2 hours, but 50 bucks an hour isn't bad pay when you're only 4 years old!
When we first arrived, he was a little freaked out by the whole situation. Luckily, they totally worked on his time and let me walk him around the studio a little bit so that he would be comfortable. When he was first on the set and I looked at him and said that they were just going to take a few pictures, this is the response I got!
The boy doesn't talk, but he sure can communicate!
The lights and all the cameras and stuff made him a little nervous,
but before long, we had him giggling and enjoying himself. Then we began the photo shoot.
They had him dressed in a red shirt and jean shorts. They are planning on using some of the photos in a birthday scene so they had a big bunch of balloons that they wanted to use in the photos. They also had lots of "treats" for him as he went through the shoot. Great idea since I'm sure they thought, "what kid doesn't like balloons and goodies?!" Well, unfortunately a boy with major sensory issues around balloons and who is fed completely by a g-tube.
Luckily they were very flexible and they were able to work in the balloons behind him so that they were still in the picture, but Bryce was not aware of them. They would take a few pictures and then give him a break where I would take him out of his chair and walk around with him and talk with him as they set up the next scene. Toward the end, Bryce was wearing down a little bit and the smiles weren't coming quite as easily so the guy taking the pictures resorted to what will always work with a boy...he began making farting noises with his mouth. Bryce instantly perked up and began laughing and smiling every time he did it. He is such a boy!
The lady from VMI said that once they crop the pictures and have them all ready, she will email some to me. I can't wait to see them. It was fun to do something a little different and out of the ordinary with Bryce, and the money he earned will go right into his benefit account.
When we first arrived, he was a little freaked out by the whole situation. Luckily, they totally worked on his time and let me walk him around the studio a little bit so that he would be comfortable. When he was first on the set and I looked at him and said that they were just going to take a few pictures, this is the response I got!
The boy doesn't talk, but he sure can communicate!
The lights and all the cameras and stuff made him a little nervous,
but before long, we had him giggling and enjoying himself. Then we began the photo shoot.
They had him dressed in a red shirt and jean shorts. They are planning on using some of the photos in a birthday scene so they had a big bunch of balloons that they wanted to use in the photos. They also had lots of "treats" for him as he went through the shoot. Great idea since I'm sure they thought, "what kid doesn't like balloons and goodies?!" Well, unfortunately a boy with major sensory issues around balloons and who is fed completely by a g-tube.
Luckily they were very flexible and they were able to work in the balloons behind him so that they were still in the picture, but Bryce was not aware of them. They would take a few pictures and then give him a break where I would take him out of his chair and walk around with him and talk with him as they set up the next scene. Toward the end, Bryce was wearing down a little bit and the smiles weren't coming quite as easily so the guy taking the pictures resorted to what will always work with a boy...he began making farting noises with his mouth. Bryce instantly perked up and began laughing and smiling every time he did it. He is such a boy!
The lady from VMI said that once they crop the pictures and have them all ready, she will email some to me. I can't wait to see them. It was fun to do something a little different and out of the ordinary with Bryce, and the money he earned will go right into his benefit account.
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