All Night Long!

Bryce slept through the night last night! This is so amazing because in his 2 and a half years, he has only done this twice before. We've been thinking that part of the reason might be that he is not getting enough food during the day and so he is hungry at night. Thanks to that tube, he now eats all night long...and gets more during the day so I am hopeful that his sleeping continues to get better. I know this was just one night, but I hope it is just the beginning. I'm just so excited that he (and I) slept so well last night! Maybe I will be able to function a little better today!

He Has A Mic-Key!

There is so much to write about, but since I know that my time without everyone awake is short, I will just give you a quick update on Bryce and then fill you in on the rest when I get a chance. Bryce is home and is doing well. He had his surgery on Thursday the 24th at 10:30 AM. Dr. Notrica came out about 11:15 and said that everything had gone well and that his Mic-Key had been placed. A few minutes later I was taken back to recovery where Bryce was still sleeping it off. He began to wake not long after that so I held him in my arms. His wake up was much easier on him this time and that was nice. He continued to doze in and out throughout the day. About 12:30 I had them bring my mom back since I could tell we would be there for a while. A room was finally available for him about 5:30 that evening so we moved up there and he continued to sleep except for when the nurses would come in to take his blood pressure and everything.

He did well through the night although he did wake in pain and was given Morphine to help him get through it. Friday morning they began his feeding at 6 AM and he received food until about 2 PM at a rate of 30 ML (or one ounce)/hour. He was on pain meds and slept a good part of the day. The nutritionist and home health care nurse came in and taught me how to use the pump to do continuous feeds and how to do bolus feeds. We will be doing the continuous feeds through the night and hopefully soon we will be doing a couple of bolus feeds during the day. He seems to be handling the feedings really well. By Sunday morning he seemed to be back to his smiley self and only needed regular Tylenol for the pain. Hopefully he will continue to heal and begin to gain weight!

Here he is all hooked up to his IV and feeding

tube. You can see his feeding pump hanging

there on the pole.

Here is a picture of his tube hooked up to his button. He only has his tube connected while he is being fed. Otherwise it is just the small Mic-Key that can be covered with his clothes.

Good Things All Around

Today is a half day at school, so I have to go get the kids very soon, but I want to try and do a little catch up here first. It seems so hard to keep this up to date! First of all, I have to say that I am so thankful for good friends/ward members who always seem so willing to help me out. As you know, Monday did not go quite as planned, and instead of being in the hospital on Tuesday we were home. So I made some phone calls and told people not to worry about picking up my kids, bringing dinner, taking my kids to music, cub scouts, etc. Well, everyone said they were all ready planning on it, so they would just do it as planned. So nice! And since I had cleared out all appointments for the day, except Bryce's Speech therapy, I decided that I would try and tackle the house cleaning that needed so much attention. Well, little did I know there were plans in the making for that as well. My friend Shelli from the ward called and asked if she could come over about 9. I told her that Bryce had his therapy at 9 and she said OK, I'll just see what I can do. So about 8:45, there was a knock on my door. I opened it and there stood Shelli with an arm full of cleaning supplies. She said that she and a few others were planning on coming in while I was in the hospital and cleaning for us as a surprise. (That would have been so awesome to come home to.) But, since I was home, I would just need to point her in the right direction and go on with what I needed to do and they would take care of it from there. I cried! Literally I began to cry...typically I don't cry when others are around...but this made me cry. I had been feeling so overwhelmed and not sure how or if I would get everything done. Once I got over the embarrassment of having people cleaning my nasty house, I was so full of thankfulness and excitement that I might have a clean house that day after all! So Bryce and I went on in and did therapy while Shelli, Laurie, and Julia cleaned bathrooms, bedrooms, floors, and everything in between. They worked until they had to leave to pick up their own children and then apologized for not getting everything done. They did an amazing job and left me very little to finish up. It was so wonderful! I quickly finished the vacuuming and had time to shampoo the carpets in the front room and boys room which I have been wanting to do since Christmas time last year! Thanks so much girls for finally making that possible. We are still enjoying the clean house! Thank you, Thank you, Thank you!

Tuesday evening I began a program called Thin Within. It's a weight loss program that a lady in our stake is doing. She is not charging for it and her focus is really on finding the inner person. I told John after Thursday's meeting that it felt like a weight loss class and a good relief society lesson on rolled up in one! And since I could use some of each of those, it might just work out fine! We'll see how it goes. With life the way it is right now, I realize that my weight loss may be slower than normal, but I'm OK with that as long as it does not continue to go up. I need more energy and by eating well and losing a little weight I know it will help a lot. The one hour of social each week won't do me any harm either I am sure!

Tonight the boys have a birthday party to go to and we have also been invited to a potluck, so we will have to see how that all fits together. Next week should be a busy one. We will be spending a good part of Tuesday at the wheelchair clinic trying to get a new chair picked out for Bryce. We are even going to be looking into power chairs. Should be really interesting. Then Wednesday is John's birthday, and Thursday is the new date scheduled for Bryce's surgery. I also have parent/teacher conferences that day. They are scheduled for 7:15, 7:30, and 7:45 AM. We will then have to leave right away for the hospital since we are supposed to be there by 9AM for check in. Whew, it makes me tired just thinking about it! If all goes well, my Mom is going to be able to come out to help out while we are at the hospital this time. I am so glad!

Another Delay

Well, things at the hospital didn't go quite as we had hopped. We got there just fine and checked in at 8:30. About 10:30 I took Bryce into the procedure room and left him in the hands of the doctors there. They let me stay in the room with them and talk to him and rub his legs until he was asleep. I like when they let me do that. It's amazing how fast he falls asleep with that stuff. I always think how nice it would be to have a little bit of that sleepy gas at home! It might come in quite handy at bed time. =) Just kidding! It is so hard to see my baby on the bed there though and walk out the door. You would think I would be getting used to it after the number of times I have done it in this past year, but it doesn't seem to ever get easier! Before they take us to the procedure room, everyone who will be working on him comes and talks with us and explains what will be happening, lets us know about all of the risks and ask us all kinds of questions. Well, today when Dr. McOmber came in he explained that occasionally some part of the body will be in the way of where the tube is supposed to be inserted and so they have to stop the procedure and go in another way. He said that this is very rare, but he had to make sure I was aware of all of the possibilities. So I left Bryce in their care and went out to the waiting room. About 15 minutes later, Dr. Notrica, the surgeon who was working with Dr. McOmber, came into the waiting room and told me that they would not be able to place the tube today. He explained that when they got in there, they noticed that the colon was in the way and it was too risky to place the tube the normal way. He said that we would have to reschedule and come back another day and have it done in the O.R. I guess at that time he will open Bryce through his side, move his colon, and then place the tube. So sad! A few minutes later Dr. McOmber came out and talked with me a little bit longer and explained everything again. He said that his colon has probably moved because his stomach has gotten so small and there is room for things to move around more than they should. My poor baby. This is just killing me!

Anyway, so they came out and got me a few minutes later and said that Bryce was waking up and wanting Mom. So I went into the recovery room and sat and rocked him for about an hour until he was awake enough to drink a little bit and go home. When I got home, I called Dr. Notrica's office to reschedule, but just got the answering machine and of course did not get a call back this evening, so, I guess I will try again tomorrow. And hopefully soon we will be going through the emotional roller coaster of preparing for surgery again!

Surgery tomorrow

Bryce will be going in tomorrow morning for his feeding tube insertion. I have really been full of a lot of different emotions today. I am really dreading it. Although a part of me knows that this is the best thing for him right now and we have tried everything else that we can think of to help him, it is still hard to accept what he will be going through. I'm scared to death. I mean I've had it all explained to me and I know that I will be getting a lot of training in the next couple of days, but it is still so scary to me. I just hope everything goes well and that his little body handles everything like it should. The other kids will all be in different places tomorrow also, which always makes me a little nervous. It's times like this that make me really miss having family close by. Thank goodness for good friends who are caring for our children during the day and getting them to where they need to be. We are trying hard to keep life as normal as possible for the older boys. Hopefully everything will run smoothly. John will be home with the kids in the evening and through the night so that will be good. It will be the first time I leave Annalise overnight. I hope she does well. I'm sure she will. She is such a great night sleeper...a wonderful blessing! Well, I guess I better see if I can get some sleep. I have a feeling I am going to need a good working mind tomorrow! I'll try to update once he comes out of surgery if possible.

Labor Day Weekend

Long weekends are great. Let's see, what did we do over the weekend? Well, I guess the highlights of Saturday were irrigation, the cool thunderstorms, and haircuts for all the boys. The funny thing is that we enjoyed all of these things all at the same time. Our time for irrigation was at 9:30 Saturday morning. When we woke up, it was raining. Funny how that works. You know, it's kind of like all you have to do is wash your car and it rains. Well lately it seems to be the same way with irrigation, if you want it to rain, all you have to do is sign up for irrigation...and you get both at the same time. =) Anyway, the boys all needed haircuts so before irrigation began we took all the boys outside and John buzzed them as we listened to the thunder and watched the lightning. Bryce was scared by the thunder at first, but soon grew to love it. I believe it was because each time we would see lightning, John would count until the thunder came and then Bryce would laugh and laugh. He thought that was great. After haircuts were through, I took Bryce in for his bath while John got irrigation started and he and the three older boys played and floated boats in the irrigation water. Unfortunately I didn't get any pictures of the fun.

Then on Sunday we went to church and I spent Sunday School hour in the nursery with Bryce and most of the Relief Society hour in the mother's lounge or hall with Annalise. Didn't get a whole lot out of the meetings that day, although Sacrament meeting was really great. I always love testimony meetings. I forgot to blog about this last week, but John and 3 other guys sang in Sacrament Meeting last Sunday. They did a fantastic job. They sang "If You Could Hie to Kolob" and it sounded really good. I love this song, but the funny part was this. While they were singing, of course I had all of the kids with me. At one point during the song, William and Jacob were talking a bit too much while drawing, Spencer was throwing a fit and crying to me about something, and I had both Bryce and Annalise on my lap trying to keep them quiet. I then realized that I wasn't listening to the song, so I started paying more attention and what I heard over and over was "there is no end, there is no end, there is no end." I know they were singing other beautiful words along with those, but somehow that is what I heard over and over. I just kept thinking sing something else! There must be an end to some of this! I actually found that quite humorous somehow at the time.

Then that evening we were invited over for games and treats at the Arriaga's house. Since leaving all 5 kids is just too much for one young babysitter, I got the two little ones down to bed and then left them all with a sitter. We had so much fun! Just talking, playing games and laughing. I haven't laughed that hard in a long time. It was us, the Arriagas, the Joneses, and the Petersons. We were up way too late, and ate way too much junk, but it sure was fun!

We didn't do anything too exciting Monday morning, but that afternoon we spent at the Crandall's home. We took some of our beef from the cow we just had processed and enjoyed a good bar-b-que and some great company!

At the end of the evening. Tired boy...and Dad!


Also, we got word Monday morning that my Uncle Dale passed away. He has been very sick for a long time, so it is nice to know that he is feeling better now.

Another Type of Green!

So on labor day, the boys were playing in their room while John and I were in the kitchen. Pretty soon we see them run through the kitchen and out the back door. Then minutes later, they all run back in the house and back to their bedroom without saying a word to us. We thought it was a little strange, but kept on doing what we were doing. Pretty soon, Jacob comes out and tells me that he has bought me the biggest jewel in the world and gives me a pretend jewel. I played along and thanked him for it and asked him where he got the money for such a great jewel. He started laughing and told me that they had gotten some leaves from outside and were pretending that it was money. When I went into their room, this is what I saw.






They had given each leaf a $ value depending on it's size. I think that in this picture William is holding the $1000 leaves, Jacob has one worth $100, and Spencer has the $1 leaves.

Pretty clever kids if you ask me. I guess for these boys, money really does grow on trees!

First Day in the Van...

and it breaks down! Doh! No, I am not kidding! We just put insurance on this one and took it off of the minivan yesterday so I got to drive it to pick up kids from school today. I was so excited and enjoyed driving it. Well, it was working fine until I began the trip home. I was just driving along and it stopped running. Okay... so I rolled to the side of the road, tried to restart it a few times and called John. I was not happy! He had a few ideas and I tried those, but unfortunately it didn't help a bit. Luckily my friend, Angela, drove by and offered to give us all a ride home. I left the keys in the van and John stopped by on his way home to check it out. It started right up for him so he drove it home. He's working on it now. I seriously don't believe it. Maybe we are finding out why it was such a great deal!

Leukodystrophy Websites

I have recently found a couple of really great sites dealing with Leukodystrophy. A couple of days ago I was looking online at wheelchair options for Bryce and stumbled onto this one...http://themorganproject.org/index.html The other one http://www.ulf.org/ was found by one of Bryce's therapists and she brought me some information from it. They are both really great and full of information. The thing that I have found so wonderful about the ULF website is that they have a support community where we are able to talk with other parents who have children that have been diagnosed with the same thing Bryce has been. Although it is terribly sad to read about other children and parents who are suffering, it has been kind of a relief, or maybe burden lifter (I guess that is what it is I feel...it is hard to explain) to see that others are going through this same thing and that there are people out there who are trying to find some answers and hopefully a cure. It's nice to be able to talk with people who know exactly what we are feeling. It's so strange to be going through this. It's like a whole different world which feels very lonely at times. Up until now, we have not known anyone, other than his doctor who has seen it a little bit,who has worked directly with children who have leukodystrophy. Even Bryce's therapists...not one out of all 6 have ever worked with a child with leukodystrophy before and some of them have been working in the field for over 20 years! It is so encouraging to see that people really are working on finding answers for this terrible type of disorder. It gives us new hope that maybe someday, someone with actually find a cure for the leukodystrophies! I really hope it is soon! Also, we found out that there is a conference held each year for families that have been diagnosed with undiagnosed leukodystrophy. It is held in DeKalb, Illinois each year and has doctors from all over the world who specialize in the leukodystrophies who come and see children like Bryce and help in any way that they can. Unfortunately, the conference is held in July so we have missed it for this year, but you better believe that we are starting to save money and make plans for next year! I so wish that I would have found out about it sooner! It would have been so great to attend! Oh well, next year! I also intend on doing a lot more reading and finding out all I can about this. One thing I am so thankful for is that we have the understanding of the gospel. It is evident through so many of these parent's writings that they do not understand the whole picture. Although I don't totally understand it either, I know that there is a plan and that the Lord is fully aware of what is going on, even when we are not.

Shandoh--Our New Van

Last Saturday we found a new van! We were able to bring it home on Wednesday. It is a 15 passenger van. We were planning on getting a 12 passenger van or a suburban, but decided on this one for a couple of different reasons. First it was a great deal which made it hard to pass up and second, because we realized that the extra space will come in handy when the time comes that we need to install a wheelchair lift in our van. Being realistic, that time is probably not too far off, so we decided to go ahead with this one now. We bought this van from a great grandmother named Peggy who is raising 5 of her grandchildren. She is a spunky woman who seemed to be full of life. Before she owned it, it was a government vehicle and it appears to have been very well cared for by both.



It is SO long! And those step things were added by Peggy. She decided that the step that was there before was too dangerous and so she took it off and added these. I think they look kind of goofy, but hey whatever works I guess!




John's family always names their cars, so this one had to get a name as well. At first we considered the name Bully since it says that right here on these steps...

but we then decided to go with Shandoh due to the kabump that appears to have been earned and placed on the van's backside. Ok this probably doesn't make sense to many people, only to those who have seen the movie Gallivants. Gallivants is a movie from Feature Films for Families that our boys have watched many times. If you want to know the story of the kabump, just let me know and you can borrow the video. Anyway, this little "extra" piece at the end reminds me of a kabump...so there you have it!

It comes with a DVD player, which was the selling point for the boys.

Plenty of cup holders up front for my drinks that I seem to always have with me.

The seat are in great condition.

The boys love that they can each have their own bench!

Peggy had also just had brand new tires and alloy rims mounted. We thought that was a great bonus!

I think that I will really love this van once I get used to driving something so huge!

A Trip to the Temple

Thanks to a friend of ours from the ward who offered to watch our kids while hers were in school, John and I were able to attend the temple together this morning. It's been quite a while since we have gone together and we had a great time. After the session we stopped at a Thai food restaurant called The Pink Pepper for lunch. Yummy, it was so good! I love thai food and haven't had it for a while. It was so nice to be able to spend some time alone with John and since it was a daytime date, I didn't even fall asleep on the way home! Thanks again Heather!

Brief Weekly Update

Ok, it's been over a week since I have gotten back here and a few noteworthy things have happened mixed in with all the everyday stuff, so I thought I would write a quick update of our past week...since we are already half way through this one! Well, as I said, on Wed. Bryce was evaluated for an aug com device. They have to test the child with 4 different versions to see which one would work the best for him (to prove to the insurance companies that he actually does need what we are asking for and to show that he is able to use the one we choose). The most common ones use buttons or switches that the child presses when he sees what it is he wants to say. Well, they tried these with Bryce and they didn't work too well because of his limited physical ability. Then they tried the Tobii C12. OH MY GOSH! IT WAS AMAZING! Ok, I'll stop yelling, but this thing was so perfect for Bryce. It is controlled by eye gaze. Seriously incredible! Too much detail to go into all of it now, but let's just say it opened a whole new world for Bryce. His regular therapist was there as well as the three others that were administering the tests and she was about in tears. I was at moments. Let me tell you, that boy may not have the physical abilities that the rest of us do, but he is one smart cookie! Not only was he able to maneuver his way through the different sections, but he was playing around with us and it as well. He would find things he liked and stick with that instead of going where he was "suppose" to go, although we knew that he knew what he was suppose to be doing, because he would briefly hit the right section with his eyes and then move on to what he wanted to do or hear, grinning the entire time! Just one quick example was a time when he was suppose to find pictures of Winnie the Pooh. He found him right away multiple times and then saw Miss Piggy. Well, he discovered that when he looked at Miss Piggy, the device would say, "Do I look like Pooh?", which I of course thought was hilarious for other reasons, but Bryce seemed to like that one because he would briefly look at Pooh and then back to Miss Piggy until it said that again. He also played a matching game and was able to find the matches very easily when all he had to do was "turn the cards over" with his eyes. Anyway, I'm finding it really hard to describe what the device was like exactly, but once he gets his...major finger crossing going on here...I will definitely be getting some video and showing everyone what it is like. Bryce became so physically fatigued while doing the evaluation and yet he still did not want to stop. He just keep pointing to the thing as the therapists were packing everything up. Once they were gone though, he was in the best mood the rest of the day. I truly believe it was because of that short time of freedom and expression that he had. We now have to wait to see if insurance will approve it and they say that could take up to 2-3 months! Oh the waiting kills me, but hopefully the device will get approved for Bryce and be here before Thanksgiving!

Also, I can't remember when we talked to Bryce's neurologist, but he called and said that the last MRI that Bryce had done, did not show any new loss of white matter. So that was great news!

Thursday night we had curriculum night at the boy's school. They seem to have pretty good teachers this year although they all seem to like using the "no recess if you misbehave" incentive/punishment. Personally, I think that is lame. I mean really, if a kid is having a hard time sitting still and listening, in my opinion what they need is a good run. Make them move. Let out some steam and then come back and refocus. They already have so much sitting time, it just seems like there are so many other ways of handling that which would be better. Actually that night there were a few things that rubbed me the wrong way. I'm not sure if it was just my attitude about it or what, but we'll just see how things go. Overall, I really like the school where the boys go. Not ready to pull them out quite yet I guess.

Friday was early release day so the kids were all home by noon. It was nice to have a little extra time with them that day. Then Saturday we went van shopping. We drove a few and decided on one that we think will work for us. John really does not like dealing with dealerships, so we didn't go that route for long. This van that we got (it actually came home with us today) was a good deal. It seems like it will meet our needs and it won't totally break the bank. It's very nice inside and has a DVD player which was the selling point for the boys. It is really long and has some lame looking footsteps on it, but hopefully I will get used to that! Or we may just get rid of the foot step thingies eventually and put a real step on it. It was actually really easy to drive and turn around and everything when I drove it, but I think it is just going to take some getting used to. It's so huge! Tomorrow I will take pictures and tell you all about it.

Well, I think that about sums up our week. John and I are looking forward to a trip to the temple tomorrow morning. It seems like it has been forever since we have been able to attend together. A friend of mine from the ward asked if she could watch our little ones for us so that we could go sometime and we decided to jump at the chance! We're really looking forward to it. We have such great people in our ward. Then we go back up to CRS on Friday, a reception that night and then another weekend will be here. The days and weeks are flying by so fast right now. I wonder what we we think of these times when we are looking back on them in a few years...

Ok sorry, not so brief. ;)