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.