Schedule for the Week

The rest of the week is just plain crazy busy. Since last night, everything that I need to do has been running around in my head and it's driving me nuts. I think that throwing the sleep study into the schedule I already had is really throwing me for a loop. I keep worrying that I am forgetting something or that one of the kids isn't covered or something. So I need to write all the big stuff down so I can see it and stop thinking about it. So here it goes. Hope this helps!

Tuesday
8:00 take older kids to school
8:45 speech therapy--B
10:30 Physical therapy--B
12 lunch, make phone calls and prepare items for sleep study while B and A sleep.
3:10 pick up J and S at bus stop (the school will not allow them to walk home by themselves)
3:30 S to music
help J with piano composition for tomorrow and help W with book report project
4:15 pick S up
4:45 Cubs for W and me (my new calling)
6:00 drop W at home, pick up Bryce and leave for sleep study
6:55 call to remind John to record BL =)

Wednesday
6:30 Sheri here to help get kids ready for school
7:45 take J and S to bus
8:00 W gets picked up for school
8:00 Take B to school (if home from sleep study)
Go with Sheri to see her house and help move some stuff in! =)
11:00 Pick B up from the bus stop
1:30 Occupational therapy--B
2:50 Pick W and N up from school
3:15 Pick J and S up from the bus stop (can't wait until next year when they will all be in the same school)
3:45 J to Music
4:45 home and John, W, and J leave for play rehearsal with dinner in hand (hot pocket?)

Thursday
Happy Birthday William!!!
8 take older kids to school
8:30--Respite with Heather--B
weekly Walmart run and get birthday items
11:30--Sheri here to watch A and boys when they get home from school. Mom and B leave for neuro appointment.
12--William home from school (Valerie)
2ish--Brittney comes/Sheri leaves
3:10--pick up J and S at the bus stop
5:00--family b-day party
7:30--Kids to bed/ prep house for cleaners

Friday
7:20--B to the bus stop
7:45--J and S to the bus stop
W--day off from school
11--pick up B from bus stop
11:30--go to Costco and get 72 hour replacements while cleaners are here!
3:15 pick up J and S from bus stop
Come home to a clean house and be ready to enjoy conference weekend!! =)

Ok, that should help. Now to go get moving again! If you know of anything that I am missing, please let me know!

Edited Monday April 5th--this schedule actually turned out quite differently than planned with Sheri's car breaking down at our house Wed. so an extra trip to her place, wheelchair lift breaking down on Thursday, having to change babysitters last minute Thursday, all kids off on Friday, a trip to the eye doctor for William, and a trip to the park Friday. My sister often asks why I even bother planning, but hey, you have to start somewhere, right?!

Sleep Study

Well, we won't quite make it appointment free until the first. Bryce's sleep study has been moved up from May 6th to tomorrow night. I called to let the pulmonologist know about the incident Bryce had a few nights ago and they decided he needed to have the study done sooner. They called back a few hours later and ask if I could bring him in tomorrow night! So with everything else going on during our two busiest days of the week, we will squeeze in a sleep study through the night. It is weird to hope for Bryce to have another breathing issue, but I am really hopeful that they will get to see what he has been doing. It doesn't happen every night, so I guess we will just wait and see!

Today's Appointments

Bryce and I just got back from this week's trip to Phoenix. For tax purposes, I figured out last night how many miles we drove last year just for medical appointments. John and I were shocked. It was 3742 miles, and I know that there were a few appointments that I didn't have down!!! Amazing!

Anyway, today we first went to PCH for a swallow study and then to the wheelchair clinic to get his chair adjusted. Things went well overall I guess. He still seems to be swallowing fine...aka not aspirating which is wonderful. The therapist did say though that his choking issues are coming from his decreasing oral motor abilities. He is no longer able to suck and is really not able to chew or get the food moved around in his mouth. Most of what goes into his mouth, comes right back out and he is drooling much more then in the past. The gagging is coming from the food beginning to go down his throat and as a natural response his tongue moving up to close his airway. As the consistencies got thicker, he had a much more difficult time. She said that due to his decreasing oral motor abilities, he needs to get all of his nutrition though his G-tube. He can still occasionally eat soft foods that don't really need to be chewed just for the pleasure of eating. Any liquids that I give him by mouth will have to be with a spoon. He will continue to need to be monitored to watch for aspiration. If that does begin to happen he will no longer be able to have anything by mouth. It's just so sad that one more pleasure of this life is being taken from him by this awful disease. It is so hard for me to not get down or even angry as I watch this continue to happen. However, I sure am glad that we live in a day where there is an alternative way of getting life sustaining nutrition into our little boy!

At the wheelchair clinic they added a crotch strap which is really two straps that go over his thighs so that he will no longer slide forward in his chair. With the added support he seems to be able to move around a little bit better while in his chair. He looks much more comfortable as well and it should help to keep his hips and spine in alignment. There are so many pieces to buckle on that chair now, that the therapist actually suggested that we color code them with nail polish to help with the confusion! =) I may just do that!

If all goes as planned, we are now appointment free until April first when we see the neurologist!

Our Bright Red Fire Truck!

As of this morning, we are the proud new owners of a fire engine red, 12 passenger Sprinter! We won't actually have it here with us until the end of the week since we bought it from someone in Idaho Falls and my parents will be bringing it here after stopping shortly in California for a doctor appointment and to pick up a few of my sister's items. While it is in California it will be getting a wheelchair lift put into it so that it will be ready to go when it arrives here Thursday or Friday. We are very excited and hopeful that this is the van that will work for us for many years to come.

Here is the description of it and some pictures that the seller had posted. I'll add some of our own once it arrives!

2008 DODGE Sprinter

This van is in excellent condition - immaculate in and out - and it runs like new and very efficiently (Ive gotten 25-27 mpg on the highway!). It includes $4250 in factory options. Additionally: New Tires (with less than 500 miles on them), Deluxe Floor Mats, and a recent oil change. Optional Flame-Red paint, 12 Passenger seating, Customer Preferred package 22A: Comfort seating group, Light group, Sound group, Rear heater group, Premium instrument cluster, 3 Extra keys, Factory warranty remaining.

Comfort -Tilt and Telescoping Steering Wheel, Electronic Front- and Rear-Climate Control, A/C, Diesel Engine Heater Booster, Auxiliary Rear Heater, Front and Rear Insulation, Power Steering, Power Windows, Keyless Entry, Cruise Control, Power Brakes, Power Locks

Safety -Dual Front Airbags, Tire Pressure Monitoring and Warning System, 4-wheel anti-lock disc brakes (ABS), Emergency exit window, Traction control, Adaptive electronic stability control, Rear Backup Alarm, Rear Defroster and Rear Wiper

Seating -Driver and Passenger Suspension Seats, Driver and Passenger Comfort Headrests, LATCH Child-seat Anchor System, 12 Passenger Seating, Cloth Seats

Audio Visual -AM/FM CD Stereo with Telephone Connection, 6-disk CD Changer, Steering Wheel Audio Controls

Other - Auxiliary Power Outlet, Front Tow Hooks, Power Heated Mirrors, I/P Storage with Hinged Lid, Portable Air Compressor and Puncture Sealant, Factory Tinted Windows, Rear Bumper Step Pad, Factory Warranty Remaining: 3/36 Bumper to Bumper and 5 Year/100,000 Mile Diesel Engine Warranty, Non Smoker

It has tons of storage space. This shows one of the storage areas in the front.

Yes, it looks like a bus, but the kids love that each seat has it's own head rest and cup holder! These are actually bench seats, even though they look like individual seats. We will lose the first row of seats when the van becomes wheelchair accessible.

Newest car I have driven in a while!

Yes, it really is that red...and it beeps when you back up! I'm pretty sure everyone will know when the Claytons are around!

The cool thing about the back doors is that when you open them up, that hinge you see there allows them to go all the way around to the side and they are magnetic, so they stay wide open while you need them to.

Bryce's fire truck!

There seems to be a lot of space in the back as well even on the short version which is what this one is.

These seats should be interesting. I don't know much about suspension seats and the one we test drove did not have them, so that will be new.

It's Finally Through!

Annalise's first tooth that is! Her bottom, left front tooth has finally come through the gums. I noticed it tonight. We have been expecting it to come through for quite some time. Hopefully she will be able to sleep a little better tonight.

Although there is so much to write about, it will have to wait. Since I've not been feeling well all day and my sister took my older boys to her place for the night, the two little ones are asleep (or will be soon), and John is outside working in his shop, I am going to bed. I just had to share Annalise's good news. Good night!

Wizard Of Oz

It's that time of year again. Try-outs for the Queen Creek community theater were last week. John, Jacob, and William all tried out. It looks like all three of them will be performing this year. William and Jacob will be munchkins and John will be the Wizard of Oz. William was really hoping to be a flying monkey, but he was fine with it when he heard the news. Hopefully it will be fun for all of them.

No Tubes Needed!

I took Annalise back to the doctor for a recheck of her ears and they were clear! Hooray!! No tubes for now...and hopefully forever!

We're Going to Disney World!!!

Well, I can't believe how fast we found out about this, but Bryce's wish is being granted!!! We are going to Disney World!!! We are all so excited. Jeff called last night and talked with John, so I just got the details from John, but basically he said that Bryce's wish had been granted and that we were scheduled to go from November 14th to the 20th. When Jeff and Mindy were here, we had to pick three dates that would work. I told them that we would make anytime work, but we picked dates in May, June, and (skipping summer heat and hurricane season) November. Over the weekend, the more I thought about these dates, the worse I felt about the November date. The reason being the nature of Bryce's condition. Although the regression has slowed, it is still happening. November is still 8 months away and I'm not sure where Bryce will be at that point. Looking back 8 months ago, there has been considerable change in Bryce's condition. I really want to go when Bryce is able to enjoy it the most. While he is still able to travel, see, hear, be aware of what is going on, etc. That may all still be fine in November, hopefully it will be, but we just don't know. Anyway, John told Jeff about my concern and he said that they will be talking to Bryce's doctor and if he feels that Bryce shouldn't wait that long then they can put a rush on it and get us out there sooner. I'm not sure which doctor they will be talking to, but I'm guessing it will be his neurologist. Unfortunately he hasn't even seen Bryce in 5 months. So I guess it will just depend on what the doctor has to say and I will just have to hope and pray that whatever is best for Bryce is what will happen. But anyway, happy news...We're going to Disney and Bryce is going to meet Mickey!!! =)

Fun on the Firetruck

Yesterday at the Queen Creek library there was an event going on that Jeff had told us about the night before. Aside from helping people through Make-A-Wish, Jeff also helps people by working as a fireman. There were all types of booths set up and of course Jeff was there with his firetruck and fireman buddies. John, William, and Jacob had try-outs for this years play that morning, so I took Spencer, Bryce, and Annalise over to see the fire truck. As we were getting ready to leave, John called and said that they were done. So they headed over and we walked through the booths, saw the firetruck, got some great bicycle helmets for the boys, did some face painting, and bought some girl scout cookies. Pretty fun morning.



As you can tell, it was pretty sunny out there.


Jeff took Bryce up into the fire truck. First in the back...


and then up to drive. He thought it was great!

Make-A-Wish

Today has been a wonderful day full of lots of fun activities. Among them was a visit from Jeff and Mindy Clark. They are Bryce's Make-A-Wish "fairy God Parents". They were wonderful and made it a great evening for all of us. Unfortunately John was about 45 minutes late getting home, GRRRR, so we had to wait a little bit to get everything started which made for a pretty late evening for the kids, but all in all, everything worked out and everyone seemed to enjoy themselves.

They brought us pizza that had been donated from Barro's pizza for dinner. Bryce was so excited about his very own cheese pizza that he got. I was so excited that he actually ate some of it. It is the first thing in about two weeks that he has been willing to eat by mouth! And no gagging. Whoo hoo!!!


Bryce with Jeff and Mindy. They are a very nice couple and seem to be a lot of fun!


Bryce loved the balloons that they brought. Some star shaped Make-A-Wish balloons and a Mickey Mouse one which we had to move closer to him because he loved it and just wanted to keep looking at it.


Thanks Barro's!

After dinner, Jeff and Mindy gave each of the boys a gift bag. I hadn't told the boys that they would each be getting something and so they thought the gifts were all for Bryce. They were so good about it and all said that they would help Bryce open his gifts.

When they found out that the gift in front of them was actually for them, they were extremely excited!

They each got some very nice gifts that helped to keep them busy while we filled out paperwork. They have had a blast playing with their new things since then also.

Jeff and Mindy were amazing. They had found out prior to this what types of things each child enjoyed and brought special gifts to fit their specific interests.

Bryce was really interested in watching the boys open their gifts. But then it was his turn.

Spencer pulled out his first gift which was a large Mickey Mouse doll and as you can see Bryce loved it! He had the biggest smile on his face and just kept giggling! It was so fun to see!

But the gifts didn't end there! He also received many other gifts including a Disney book with a smaller Mickey doll that now sleeps with him, a really cool train book that lights up which is a very close second favorite of his, a Make-A-Wish match box car, a video, and a Disney memory game.

Bryce found that his new Micky Mouse had perfect ears for chewing on. I don't know why, but he kept putting them into his mouth. It was so funny.

After opening up the gifts, we split up, John and Mindy filled out paperwork, the kids and Grandma played with their new treasures, and Bryce and I got the fun part and went with Jeff to discover what Bryce's wish might be. We had to choose two things. Two of Bryce's main loves right now are Micky Mouse and Trains, so we went with those themes. His first wish is for a trip to Disney world and the Give Kids the World Village (check out the website www.gktw.org to read about this incredible place and the man who started it...but be sure to have some tissues close by, you will need them!). The second was a little harder to come up with, but we went with a train ride and museum that is in Colorado. I'm sure that either would be fantastic, but I think that the first one would be perfect for him at this time in his life. He would love all the sights and sounds...and he could ride the trains there, so we are very hopeful that his first wish will be the one that is granted. I think the village would be great for Bryce as well as the other kids because it would give them a chance to meet other siblings of kids with special needs and realize that they aren't so different, that there are others going through the same things they are going through. Maybe they would even meet some that they could become pen pals with and share some of their feelings. Of course I think it would be a ton of fun for John and I also! =)

After filling out the paperwork and picking the wishes, we all enjoyed ice-cream that had been donated by Cold Stone Creamery here in Queen Creek. They had brought three different kinds and they were all delicious. Bryce thrilled me by joining us in the eating of ice-cream as well!

Make-A-Wish is such an amazing organization. This is only the beginning and already they have made Bryce and the rest of us feel so great. We have already received so much more than we even expected. Jeff and Mindy are also absolutely incredible. I feel like we have joined a whole other family group and that they have joined ours.

Green Eggs and Ham

This morning I got to go to breakfast at school with Spencer and have green eggs and ham! His school, along with many others, have been celebrating read across America week this week. As part of this, they had a breakfast for all of the kindergartners and their parents. They served us green eggs, ham, and chocolate milk or orange juice. It doesn't get much better than that! It was so much fun to spend time with Spencer.

Spencer holding our tickets. I got to stand in line with him as we went through the area where he gets his lunch everyday. He enjoyed telling me all about how they do lunch there and how they have to wait behind the orange cone until there is room to go into the cafeteria to pick up their lunch.

Spencer ate up all of his ham...

green eggs...

and orange juice!

A couple of friends from Spencer's class.

Here is Spencer's class.

Spencer and his teacher Mrs. Sisson. The entire staff was dressed up as Cat in the Hat today! So fun. Spencer's teacher is fantastic!