Schnepf farms

Last Saturday we went with our good friends, the Patton family, to Schnepf farms. I thought I better blog about it this morning before we go to the boy's fall carnival and have another big post to make! Although the high last week was 100 degrees (yes, ridiculous I know!) we had a wonderful time. It is always fun to see Mark, Shellie, and their boys.

This was Spencer's first trip on the roller coaster.
He was very excited at the beginning, but quickly
decided he did not want to ride again!


John waving. Jacob was sitting next to him and
William and Spencer are in the seat behind them.

Jacob on the plane ride

Spencer and William. They all loved this ride.

Kyle and Braydon

Spencer and William

It's hard to see in this picture, but this is John and

Bryce on the bumblebee ride.

William and Spencer

The huge slide

One of John's old buddies from Motorola was there

playing in the band.

roasting marshmallows

Jacob hanging out with the band.

Bryce and Annalise thoroughly enjoying life!

William, Ryan, and Kyle playing in the dirt while

we waited for the train. It was a long wait!

Finally, it's our turn on the train

Photo op!

Look at that one little princess surrounded by all

those boys!

Bryce loved the carousel. He went on it multiple times.

Playing on the hay bales

Sliding down the hay bales. Bryce watched the boys

doing this and just laughed and laughed.

Jacob's pumpkin pick

Spencer's pick

We actually didn't buy any pumpkins that night.

We decided to wait and buy some a little cheaper

at the store.

We were there way past bedtime. William was the

only one who seemed to notice. Here he is sleeping

on the tunnel in the play area while the other kids

played.

Sleeping on the hay

Nice pillow!


And of course the night had to end with fireworks.

Everyone except Bryce enjoyed these. The poor

boy jumped and clung to me every time one went

off. Overall, we all had a very good time.

Food Storage

Sometimes you wonder if your children are really understanding the lessons you are trying to teach them. Well tonight during FHE our boys showed us something that they seem to have learned quite well. Each week during Family Home Evening the boys get their allowance that they have earned for the week. Tonight Jacob brought his bank over and began to pull out...not money, but a bunch of granola bars and other snacks from inside of it. Many of these snacks looked an awful lot like the ones that I had recently filled our snack bucket with. John and I started questioning him about it and William piped up and informed us that he too had a stash of food in a bucket that he keeps hidden in the kitchen. He brought his over to show us. Sure enough, he also had a bunch of snacks tucked away. He said, "yeah Mom, you know how you have food storage. Well, this is like OUR food storage." So, I guess they have decided to have their own little containers of food storage items...just in case the snack bucket in the pantry ever runs dry!

New Bike

This week is fall break and the weather has been beautiful. The boys have spent a lot of time outside...which I love. At the beginning of the week, I realized that Spencer does not have a bike...he never has! I said something to him about it and he said, "Well, I don't have a bike, because I don't know how to ride one." Poor kid. I explained that we would get him one with training wheels and we could teach him how to ride it. He got so excited! But things happen and I didn't get out to get him one Monday, and then on Tuesday the three boys went down to get the mail. I saw them as they were coming back, William and Jacob on their bikes and Spencer running with all his might and totally out of breath trying to keep up with them. He never complained about it, but it did remind me that he needed a bike. Then Wednesday they had been outside playing when Spencer came in with his brothers right behind him saying, "it was an accident, it was an accident." He was crying. I looked and Spencer had some skinned knees and a bleeding elbow. I guess they had been riding bikes and poor Spencer was running with them, only this time he was running in front of them. I guess he didn't run quite fast enough and had a run in with on of the bikes. So...I decided it was really time for him to have a bike. As soon as John came home from work I left and stopped at Walmart to get him a bike before heading over to Bunco. They didn't have the bike in stock that I had seen and was planning on getting, but I didn't want him to have to wait any longer and so I spent an extra $10 and got him this one. I was so excited as I walked through the store with the bike, you would have thought it was for me. As soon as he woke up this morning I had him close his eyes and walk outside with me. He was so excited when he saw it and the boys have been riding bikes pretty much ever since then!



Yes, it was still dark when they began riding this
morning.








I like this picture even though it is a little blurry
because you can see in his face how hard he is working.


Sometimes you just need a little push from your
big brother! William and Jacob were both great
at helping Spencer this morning.


Spencer has become quite a great
bike rider today!


There is just nothing better than boys, bikes,
and fall break!!!

Two Exciting Things from Today

First of all, Bryce ate an entire half of a grilled cheese sandwich for dinner tonight! That is more than he has eaten at one sitting in months...maybe all year! Typically if he eats anything, it is no more than a bite or two. He was able to sit in his chair the entire time and eat it without any gagging or choking. I know it sounds funny for me to be so excited about all these seemingly little things, but this really is huge progress for him. He really seems to be having some up days. I hope they continue this time.

The other good news is that our new renters moved in today. It is a couple from our ward who, like many others, have come into some rough times lately and are needing to rent for a while. It's always a little nerve racking to rent to people you know...especially ones from your ward, but we have all talked about that and said that we will keep the friendship on one side of it and the renting as business. We're excited about it and we're hoping it will all work out.

Actually, I just thought of one more good thing from today. Spencer went all day with dry pants! As some of you know he has had some set backs in that area over the past year. He was fully potty trained and then when all of this stuff started with Bryce, he began to have accidents. He was doing better for a while and then began having trouble again when we had our first mother's helper and Annalise was born. Again he began to do a little better and then he began kindergarten and has been having multiple accidents everyday. Until today! He was so happy with himself tonight and I am thrilled that he made it through the day. We have fall break next week, so hopefully we can really work on it all week and retrain his body one more time! Here's hoping for more dry days!

Up 2 Ounces!

It may not sound like a lot, but when the scale showed that Bryce was up 2 ounces from his weigh in 2 weeks ago, I was jumping for joy! We haven't seen the scale move in that direction for a long time. He has slowly been losing weight for almost 10 months now. I hope that he can continue to gain and get stronger and stronger.

This is also the first 24 hours that he has not needed medicine for pain. He is sleeping so much better through the night and even has a greater desire to eat by mouth now. All good things!

The follow-up visit with Dr. Notrica went well today. He said that everything looks good and that Bryce can bathe and swim again as normal! The nurses also showed me today how to check the fluid in the balloon that is holding the button into Bryce. I have to check that once a week to make sure there are no leaks. They also showed me how to change the button. I shouldn't have to do that more than every couple of months unless by accident his button gets pulled out. This can be especially bad because the hole will begin to close up within an hour. So, if it does come out, I have to get it back in right away or take him to the ER and have them fix it. I'm just hoping it stays where it is suppose to be!

Things We've Missed

Ok, we haven't really missed these things, it's just that they have come and gone during the past two weeks so quickly that I haven't been able to write about them at all. Since I am up this morning, I figure I will try and catch us up a little bit. First of all, I am glad that September is gone and hope that October will see less hospital visits for everyone. Aside from Bryce, my brother-in-law Tim had back surgery and my uncle Jed was in for Gall stones, all within the last two weeks of September. On labor day, we also lost my Uncle Dale. I haven't ever been really close to him, but I do feel for his kids and it is scary to see my Dad's youngest brother pass away from a heart attack.

In happier September news:

On Sept. 20th Jacob decided that he wanted to make some money by having his dad pull out his 4 loose teeth. We only managed to get 2 out at the time, but after 2 days of the tooth fairy being lame and forgetting to come by our house, Jacob was happy to find a bag with money in it where his teeth used to be.


The string is on and ready to go. We found this tooth in the shower once it came out.


What a mouth!


On the 22nd Bryce and I went to the wheelchair clinic to have him fitted for a new wheelchair that will be able to support his Tobii communication device. We tried a power chair but although he thought it was great fun, we decided that a manual one would be better at this time. He couldn't quite get the chair to move forward or backward. He mastered going in circles though which he seemed to enjoy. I wish I had my video camera there. It was really funny to watch him thoroughly enjoying himself as he made himself go around and around.

On the 23rd John turned 40 years old. He had been saying he didn't want a party and then the day before said that maybe a surprise party would be fun. Well...it was a little too late at that point. But, I now know that this is the route I will have to take in the future. I'd still like to do something with some of his friends if I can get it put together before he turns 41! That evening we did have a little family party for him which was a lot of fun.

The boys wanted to get their dad some gifts so Wed. after school I took everyone to the $1 store (crazy) and let them pick out some gifts for him. They were so excited as they watched him opening them.


A good friend ordered pizza for us and had it delivered to our home for dinner.


The kids picked out a cake for their dad and then watched him blow out the candles. We didn't have 40, so we had to settle for 4 on one side and 0 on the other!


The 24th and 25th were spent in the hospital. I was so glad that we were able to be home by Sunday which was the day of the primary program at church. John teaches primary so he and the three older boys were up on the stand throughout the meeting. My mom was here so she helped take care of Annalise while I had Bryce. The program was wonderful! The boys all said their parts without trouble and it was fun to hear and watch all the kids as they sang some wonderful songs. It is always my favorite Sunday of the year! I took Bryce home right after sacrament meeting since he had just had surgery.

Mom decided to stay one extra day to help me on Monday before she had to head home to help with Kim's kids while Tim had surgery. That morning we had Bryce's annual review where we go over his goals and plans for the next few months with his case manager. Not much has changed with him in the last few months so there wasn't a whole lot of change, but the meeting still took 2 hours.Ridiculous! His case manager really likes to talk!

Then I took Annalise in for her 4 month checkup. I can't believe she is 4 months old all ready! She is growing just great and is now 13 pounds and has chubby little thighs despite her reflux issues. Her doctor suggested we try her on soy formula since we have basically tried everything else other than medication and nothing seems to make much difference. So far she seems to be doing well with soy. I would add some pictures of her, but unfortunately I don't have any new ones right now. I really need to take more pictures of this cute little girl. Poor fifth child!

Thursday, October 1st, Bryce had two appointments scheduled. The first was one to adjust his SWASH so that it will fit with his Mic-Key and the other was with his neurologist. I actually called and changed his first one because he was still having quite a bit of pain and I figured it wouldn't matter if we waited a few more days and let him heal a little bit before messing with him again. We did go up to see Dr. Narayanan though. I had a few things to talk to him about now that I have researched and learned a little more about Leukodystrophy. Unfortunately he is still stumped as to what to do for our boy. He still is leaning toward one particular disorder that can be determined by a Ct Scan, which Bryce has already been tested for, but he wants to check it again. He said that Bryce's last MRI which showed no change from the previous one is what is throwing him from the leukodystrophy diagnosis because with all leukodystrophies that are know so far, the MRI continues to show more and more white matter depletion as time goes on. Their MRI's don't just stabilize or get better. Bryce's seems to have plateaued. John and I have decided that our next step is to send Bryce's record to the ULF and see what those doctors have to say about it.

And that brings us to this weekend. We have all been enjoying conference while munching on the food from our 72 hour kits. It's so great to see the boys so excited for conference even if it is just because they get to eat treats in front of the television. Last night while John was at the priesthood session, the boys and I had a pizza party while watching Kit Kittredge. They thought I was sooo cool!

Well, it is now almost 11 hours after I started this post. I guess I better hurry and publish it to our blog before I get interrupted again.

Short Lived

Well, the sleeping through the night seems to have been just a one night wonderful blessing for now. I still have hopes that it will happen again, but...time will tell. Tuesday night Bryce woke up with terrible leg cramping pains and then this morning he woke up at about 3 am and seemed to be in a lot of pain, although I couldn't tell what was causing it. I hate that he is not able to tell me what is bothering him! Poor baby! I got up with him and as I walked and patted his back, he let out a big burp and then spit up all over me. He had some trouble during the day with this yesterday also. It seems like maybe we will need to decrease the amount of food he is getting for a little while. He had been handling 35 ML/hour just fine and so I upped it last night to 40. Considering 30 ML is only an ounce, it's not much more, but it must have just put his little tummy over the edge. The goal that the nutritionist set for him is to get 50ML/hour for 10 hours at night. And then 3 feedings of 90ML during the day. We have to work up to that slowly though! There is no point in rushing it.

So Bryce was up at 3, Annalise (who is usually my really great sleeper) was up at 3:30, and just as I was getting Bryce back to sleep at 5, in comes Spencer! So, my day began very early and unfortunately we have a very busy one ahead of us. Oh give me strength!!!