Bryce's First Day of School

Bryce started preschool today. It is through the chandler school district here. I think it is going to be a great thing for him. There are about 8 children in his class. All but one of which are boys He should feel right at home! There is one teacher and 3 aids for the class. The little girl is also in a wheelchair, but the others just have hearing, speech, those types of issues so Bryce gets a lot of the physical help that he needs in order to be involved with the class. This morning when I dropped him off, I told them that he has a tray that goes on his wheelchair, but that I had forgotten it and would bring it on Friday. They told me not to even worry about it because he would only be in his chair for a total of about 15 minutes a day! Other than that, they have him out and right down there with the other children, either in someone's lap or in special chairs that are made so that he can be on the floor for circle time, or at the table for crafts, etc. It seems so great. I was very relieved when I left today. He seemed so happy and the whole feel of the place was wonderful! He will be getting PT, ST, and OT while he is there as well. He was pretty tired when I went to pick him up. However, when I started to put him in the van to go home, he started throwing a fit and looking toward the school. I promised him that I would bring him back on Friday!

I was trying to get a picture of Bryce before school and he kept looking away and giggling. He knew exactly what he was doing...the little stinker!


My handsome, big boy!

I took these pictures while we were in the PT's office. I'll have to get some others inside his classroom sometime.

He's a little charmer. Everyone there seems to have fallen in love with him already!

Pinewood Derby

Last night was William's first Pinewood Derby. The night started out a little rough for him as he lost his first few races. Luckily though, he ended up winning a few also, so it was all good in the end. There were 3 top winners who won prizes and all of the other boys got a ribbon, which I thought was a great touch. In the end, there were a few sad boys, but overall, I think everyone had a really good time. William and Jacob can't stop talking about how they are going to make their cars for next year. They are both very excited!

The evening was wonderful, but unfortunately my camera wasn't. I took so many pictures with both my regular camera and my iPhone and most turned out either blurry or orange. I'm posting the only ones that were even worth having. Hopefully I will have a new camera by next year's Pinewood Derby!

William waiting patiently for his first race.


It was fun to see all the siblings watching the races. I think the caution tape was a great idea.

We were sitting at the end of the track which was a great place to see the action. Bryce's eyes were glued to the track most of the night. He loved watching the cars...and the boys!

I was proud of William. Even after a couple of losses, he was still able to give me the thumbs up! Way to go William!

Getting ready for another race.

Yes! Finally a win!


Way to go William!

They Made It!!!

Bryce's records have arrived in the Netherlands! I just got the confirmation of the delivery. Knowing that brings on a strange mixture of emotion. It makes me both nervous and excited. I'm so thankful for my parents who helped to make this happen so quickly! Hopefully we will hear from Dr. van der Knaap soon. Not sure what news we will get, but we are hoping and praying that it will be helpful (and good)!

Happy Birthday Bryce!

Happy 3rd Birthday Bryce! I can't believe it was 3 years ago today that this little boy rushed into this world at 11:20pm.



Although today started out a little differently then planned, it has been a wonderful day! Bryce was suppose to start preschool this morning, but during the night I realized that the balloon that holds his Mic-Key button in was no longer holding water. Since I did not have a spare button, we taped it down so that it would not come out during the night. We then drove to PCH first thing in the morning where he had a new one put in. It ends up that he has grown some and so he actually needed the next biggest button, so it was good that we went in after all.

My parent were able to spend the day with us. They were on their way to Texas and made it possible to stop here to spend the day on the way over. Bryce, as well as the other kids, loved hanging out with them. Also while they were here, they took Bryce's records that I had collected and made copies of them and sent the package off to the Netherlands. They also picked up the pizza and cake for Bryce's party.

Bryce loves Curious George, so that was the theme of his party. Pizza is one of the few things that he will still eat, so we had that for dinner. Bryce actually ate about a 1/4 of a slice. He loved it!









Everyone loved helping Bryce open his presents.

He would get so excited each time he would see the toy inside the wrapping.

Bryce loves his Tickle Me Elmo that he got from Grandma and Grandpa Stephens.

Aunt Sheri, the flight attendant, got Bryce this great airplane and pilot's hat.

After opening presents, we sang Happy Birthday and lit the three candles on the cake. He loved looking at the candles and playing with the cake, but wasn't interested in eating any. I guess he was too full from his pizza!

Bigger and Better Things

OK, now that I have gotten all of that out of my system, I am moving on to bigger and better things. Today was a great Sunday. The best part about it was that everyone was well and we were all able to go to church today! It's been three weeks since I had been. It sure felt good to be back! It was funny how many people actually thought I was holding someone else's baby until they got a good look at Annalise and realized that it was her. I guess she has changed a lot in the last few weeks. She sure has been learning lots of new things. She now crawls, pulls herself to a stand, claps, waves bye-bye, and plays peek-a-boo. She is still working on her first teeth and her sleeping habits have become very less than desirable, but she is still absolutely adorable and very smiley.

Relief society was very good. It was taught by Sister Jenson and was on a talk given by President Monson on Anger. I was asked to read this quote, "To be angry is to yield to the influence of Satan. No one can make us angry. It is our choice. If we desire to have a proper spirit with us at all times, we must choose to refrain from becoming angry. I testify that such is possible." Hand picked for me today? hmmm...maybe!

Tomorrow will be a big day for Bryce. He turns 3! It's hard to believe. He will also be starting preschool at Riggs elementary school. I really can't believe he is old enough to go to school! Eventually he will take the bus, but at least for this week, I will be taking him. He will be getting physical, speech, and occupational therapy while he is there. The teachers seem really great. I know he will love it!

An Explanation

OK, so I guess my previous post needs a little bit of explanation. It was really the reaction to a lot of little things that have happened in the last couple of days that all came to a head this morning when I read an email that was sent to me. It was just the last straw that pushed me over the edge...so to speak.

I spent a good part of the day yesterday in Phoenix working on getting all of Bryce's medical records. These are records that I requested over a month ago and still did not have. So I had John re fax the requests to both PCH and CRS last Tuesday and on them I wrote that I would be in on Friday morning to pick them up. On Thursday I received a call from PCH telling me that Bryce's file was 297 pages long and that it would be $209 to get them! Seriously?!! I have gotten records there before for other doctors and I haven't had to pay a cent. So I asked about that and he said that it is a new policy they have, that they are charging for the copies and the labor to make them. He actually asked me if I really needed all of them and what I needed them for. Well, yes I need all of them so that I can send them to doctor's who hopefully will know more about Bryce's condition then the doctors here do! However, paying $209 for my son's records is ridiculous! He told me he would see what he could do and call me back. Well, I never heard back from him, so after Bryce's appointment with Dr. Notrica, I headed over to the hospital to see what I could do. I had the two little ones with me and since it is still flu season, I was not allowed to go into the hospital. I told them that I needed the records today and I would wait while someone brought them up to me. Luckily the gentleman that I spoke to on the phone brought them right up. He handed me a large envelope full of records and said that he had told "them" (I guess the people who are doing the charging) that I really needed the records and was not able to pay. OK, that works for me. He said that they had made an exception for this one time for me and that they would just charge me for the time it took to make the copies, which was about 2 hours. They charged $40. OK, that I can deal with. So I took the records and now have a full copy and hopefully will not have to deal with that hospital for a long time! I'm good with that!

So then we headed over to CRS to get his records from there. I went in and explained who I was and why I was there and the lady said, "oh, that would be good if I could give them to you, but that isn't how it works here." She then explained that it takes about 3-4 weeks from the time they get the request until the time they can get them to us. She explained a whole process that they go through and how the records have to be copied at the main hospital and all that crap. Anyway, by then I was like, whatever, I have most of them already so I will just wait for the rest. I did have her check to make sure the fax had come through and I explained why it was so urgent that I get his records ASAP. She was very nice and said that she would see what she could do to speed up the process. We'll see!

I am also frustrated with the run-around we are getting from the neurology department at CRS. Bryce has been having more "non-breathing" episodes and as of this week, he has become unable to suck so he cannot drink out of a sippy cup any longer. He is also having a terrible time with choking when he does eat something, which is also very bothersome. There are also some questions that I have regarding the medication he is currently taking for his stiff muscle tone. These are all related to his disorder and since we haven't seen the neurologist since October, I thought I should call and talk to his doctor about it. I also want to ask him about some other possible reasons for what is happening to Bryce that others have told me about (thanks Becca!) Well, I only got to the nurse and after explaining the different reasons why I would like to talk with the doctor she made this comment, "well, if he stops breathing, you need to take him to the hospital." No? Really? Is that what I should do?!! Seriously, I'm not stupid. I know that. These episodes are only seconds long and all I have to do is remind him to breathe and his body kicks in, it is part of the leukodystrophy that he has. What I would like to get is some type of monitor so that when it happens and I am not right there with him or during sleep, I will know and be able to make sure he is OK, in case the time comes that his body doesn't kick in and start breathing. She then told me that my next appointment with Dr. Narayanan is in April!

So, now on to the Aug comm device. This story actually began back in August when he was evaluated for the device and the process of getting it began. We were told that since it was a new product, it may take a few extra weeks to get it. Fine. It actually arrived just two weeks ago . John made a special trip into Phoenix during his lunch break one day to pick it up since we didn't want to wait until Bryce's support coordinator was able to get it to us. We were so excited to have it. That night after the kids went to bed, John and I opened the packages and began to check it out. We quickly found that we would not get too far without some instruction on how to use it. There was a note with a name and email address of the lady from the company who would be doing the training for us. So I emailed her right away. Tuesday morning I got an email stating that normally she would be over within the week, but that her grandmother had passed away and she would be going to Kentucky for the funeral. She gave us a website that would give us a little bit of direction for us to look at until she was able to come out. We looked it over, but still couldn't get it to work right. So that brings us to this past Thursday, almost 2 weeks after picking up the device. Amanda, the lady from the Tobii company came, looked at the machine and asked if that was all we had received. It ends up that for the eye tracker part of it to work, you need a mount...either one for the table or wheelchair so that it stands up right and can track his eye movements. We were suppose to get one for his wheelchair, but it hadn't come. We went over this with the person doing the ordering back in Aug. and that is why we switched the type of wheelchair we got for him. She said she was sure the DDD-aug comm person wouldn't have ordered the device without a mount, so she would check on it for us. The email that set me off this morning was the one that said that unfortunately they had done just that!!! Here is a piece of the email stating what we need to do now in order to get a mount so that the device will actually work:

What needs to be done is the family needs to contact their support coordinator and request a mount evaluation. Then the mount would be decided upon and the report sent to DDD-aug. comm. They order the mount and it is delivered to the support coordinator who contacts the family to pick it up. Then, the support coordinator authorizes a mount installation and someone goes out to install it. I would not want the desk mount ordered for him unless his family has really looked at all their options. Ideally, the mount would be mounted to his wheelchair that is why they got the wheelchair instead of the KidKart. Then he is able to use his device in more situations and locations.

Grrr! Duh! We had already decided on which mount. Why would we need a mount evaluation?! We already know that we want the mount for the wheelchair. That is what they had told me they had ordered clear back in September! Amanda actually suggested that we request the table mount as well as the wheelchair mount so that he can use it both in and out of his wheelchair which I personally think is a good idea, so that is what I am going to do. Also, I have decided to do this because I think the table one will come much faster than the wheelchair one...I think. I know the state is not going to think he needs both, and thus not want to pay for both, but at this point I really think that is what would be best for Bryce, so that is what I am going to try for. When he no longer needs it or is able to use it, I will be returning it and they can give it to someone else, so I don't see what the big deal is. We'll see what happens when I call on Monday.

So basically it was all of this stuff put together, along with the fact that I had been up multiple times throughout the night with various children and then up for good at 3 am with Annalise, along with all the other family things you deal with on a daily basis. I had just hit my limit.

Frustration!!!

I am so frustrated right now I just want to scream! I understand that to everyone else, Bryce is just another kid in the system and they couldn't care less about him, but I am so sick of having people tell me one thing and then doing another or just not doing anything! They don't get that when it takes them 6 months to get what he needs "now", he most likely will have regressed far enough that the device that could have helped him then is no longer going to work for him! That is how leukodystrophy works! Every day he is slowly regressing. He is not getting better...or even staying the same! Every day they wait is important time wasted, every minute! Why can't they get this!!! I want so much to be able to communicate with my child. I want to see him enjoy what life he has here. He is being robbed of so much, why can't these people work with me and help him get the most out of it while he is here!!! It just makes me so mad and so sad!!!! I hate knowing that there are things out there that can help him to a certain extent and realizing there is only so much I can do to get those things done because of all the red tape and lines of people we have to go through to get it done. It's ridiculous! It hurts so much to see my almost 3 year old knowing what he wants, trying to let me know, and then getting frustrated when I just don't guess it right. He is such a good kid and so patient and yet, he is mentally a 3 year old. Think of the 2 and a half and 3 year olds that you know. How many of them are OK to just lie there and not talk, not be able to get their wants known, not be able to move on their own more than a newborn can?! Not to be able to do anything by themselves when that is exactly what they want the most...to do it by themselves! I can't think of any and in this way, Bryce is the same as any other child his age. I am sorry, but I am so frustrated right now. I wish some of these idiots I'm trying to work with would come live with this incredible boy for a day, just one day and maybe, just maybe they would see what I am talking about! Not that they would care, I know that is too much to ask, but at least maybe they would see!

Dr. van der Knaap

I am so far behind in my blogging, but I have to get today's good news down in the next few minutes I have before going to pick up kids from school. Then hopefully I will go back and fill in the info on everything else that has been going on later. I've been working on getting all of Bryce's medical records together so that I can send them to the ULF for their 2nd opinion program. It is taking so long to get the information that I need which is really frustrating. But, lately on the leukodystrophy message boards where I talk with others who have children going through the same type of stuff Bryce is, people have been taking about a certain Dr. Marjo van der Knaap from the Netherlands. She has worked with a lot of people and has helped many of them to know which type of LD they have...or if it is not a LD at all. She has also discovered which gene is affecting certain children, which has led to names of some of the newer/rarer leukodystrophies. Since she is one of the Doctors on the ULF team, I have felt kind of funny about getting in touch with her directly...until yesterday. I finally have had enough waiting and getting answers that just aren't OK with me. So yesterday I typed up an email and sent it off to her. I briefly explained Bryce's situation and asked her if she would take a look at Bryce's MRI's. She emailed me back this morning asking me to send them right away and she said she would be happy to take a look at them. I don't know if it will get us anywhere, but I sure hope so!

Weird Day and Chick-fil-A

This morning we had a new experience. When Bryce woke up and I went to get him, I noticed that his clothes were wet. I figured that his feeding tube had come unattached from the unit like it has a time or two before. It's a mess and a pain, but no big deal. Well, I checked, and it was still attached. As I looked closer, I noticed that his button had come completely out of his stomach. Ugh!!! I hit panic mode momentarily, but then remembered what I needed to do. Ends up that the balloon that typically holds it in had gotten a hole in it and deflated, making it able to slip out of the hole. Luckily I had a spare one and the surgeon had shown me how to put it in at our last appointment. It was actually very easy and now I know I don't have to be so scared about it happening, but it sure made me nervous this morning!

Then this afternoon the cleaning ladies came at 11, so after picking the kindergartners up, we went to Chick-fil-A for lunch. We had Trevor with us also. The kids had a great time but the place was pretty full. It was kind of tough trying to keep Bryce and Annalise entertained while we were there. Luckily Annalise fell asleep and slept for a while. Even though Bryce doesn't do well inside the play area, he loves watching the other kids while they play. The problem was that all of the places near the play area where he would have been able to see in, were taken. We sat as close as we could, but he still couldn't see. Once one of the tables became available we switched and he was much happier being able to enjoy the kids.

As we were leaving, a police car pulled up right in front of the entrance. The police officer got out, went in one door and came out the other. He then got back into his car and drove off. I thought that was a little strange, but didn't think too much of it. We just went on over to our van and started getting in. Pretty soon the same police man came back, and stopped in the same place. As he got out another police car pulled up just a little further back and both police men went into Chick-fil-A. Shortly after they came out escorting a teenage looking boy and helped him into the back of the second police car. As they were driving off, I saw a third police car that had parked a little further back and still had the officer in it. I'm not sure what was going on, but luckily it all stayed calm and Chick-fil-A is still a safe and happy place to go!

Happy New Year!

Well, the new year seems to be off to a good start. John spent some time today at the Smith's house. He, Glade Smith, and Jake Johnson worked together to kill and clean 7 chickens. Two of those were our roosters that have been driving us crazy with their constant crowing for some time now. We are looking forward to a peaceful night sleep tonight!!! Also, we think that the roosters have been eating all the food and the hens have not been eating enough to lay eggs like they should, so hopefully we will begin to get eggs again soon!

While he was there, the boys and I worked on taking Christmas decorations down. We still have some more to go that we will have to finish tomorrow. It's always tough to say good-bye to the Christmas season, but it is also nice to look ahead into a new year.

Then tonight we had our little New Year's Day party. We had planned on doing this last night, but the kids were so tired after being up late the previous two nights. So New Year's eve Spencer was asleep before 7, William, Jacob, and Bryce made it to about 8, and John, Annalise, and I made it to about 11, when we decided to just ring in the new year sleeping. I'm glad we did. It came just fine without us and our little party today was nicer since everyone was not so grumpy.

As we move into the new year, we are looking forward to the many things that are already planned and hope that this year will bring many wonderful surprises as well.