Changing the clocks

I had a bad nights sleep. I awoke about midnight feeling very sick to my stomach. I tossed and turned feeling nauseaus (no, I'm not pregnant) got up and walked around, layed down, got back up again.... Finally, after awhile I fell asleep only to be awakened by Crew at the normal 4 am. He was awake for awhile then I finally went back to sleep for a few more hours.

The family got up and scrambled around to get to church by 9:30. In our church building there is another ward that meets at nine. We arrive 9:15.... very few cars in the parking lot. "This is strange", we said. "Maybe, the powers out!" Our family piles out of the car, files into the church and as we are walking in my DH declares "We forgot to change our clocks!"

Duh! It hadn't even crossed my mind. So back home we went with an hour to kill.

Here is some interesting info about the spelling and grammar associated with "the" time change.

The official spelling is Daylight Saving Time, not Daylight SavingS Time.

Saving is used here as a verbal adjective (a participle). It modifies time and tells us more about its nature; namely, that it is characterized by the activity of saving daylight. It is a saving daylight kind of time. Similar examples would be a mind expanding book or a man eating tiger. Saving is used in the same way as saving a ball game, rather than as a savings account.
Nevertheless, many people feel the word savings (with an 's') flows more mellifluously off the tongue. Daylight Savings Time is also in common usage, and can be found in dictionaries.
Adding to the confusion is that the phrase Daylight Saving Time is inaccurate, since no daylight is actually saved. Daylight Shifting Time would be better, but it is not as politically desirable.

So there you have it! I've been saying it wrong for yonks!

All I can say, is I wish I had remembered that we were to turn back the time an hour... I could've used the sleep!

Transition Preschool

Crew started his first week of transition preschool. This preschool is basically a little class for the kids that are getting ready to transition out of the Early Intervention program into the school district. The purpose is to help the kids get ready for the special ed. preschool... to get use to being away from mommy, and to learn to listen (ha ha), and for structure.

On tuesday we went for the first time. The class is 2 hours long and Crew seemed to do fine. He fussed for about 30 seconds when I walked out the door and then he calmed down. Luckily, there are only two other boys in the class and they are adorable. The small class size is perfect! I love it! Crew came home with an adorable pumpkin craft that he made "all by himself". He painted and sprinkled nutmeg on top. Mmmm. Unfortunately, I don't have my scanner hooked up but you can see what his friend E's looked like here.

Today at school we took his walker. They said he had a good day and he even got to take his walker down a long long hall to the drinking fountain. Yeah Crew! When I picked him up he was "making music" with shakers. Preschool life is good!

2-yr Molars

I think I figured out the reason for Crew's monstorish attitude. He's teething! Duh! I thought it was the medication. Yesterday at gymnastics the teacher was helping Crew swing with the rings and she noticed he was getting a new molar. She pointed it out to me and I was like... Duh! Okay, some moms are slower than others! Crew has always had a really hard time teething. He screams and attacks. I have scratch marks all over my face because he keeps attacking me. It looks like I've been in a fight with a cat. I'm hoping that the teething is the reason for his bad attitude because I've been worried that it was the medication causing such behavior. I guess the only way to know for sure is to wait and see.

A Good Ending to a Hard Hard Day

I can't really go into the details but its been a really hard day. Crew had a PT appointment today with Shaun. When we first got there, I pointed out that Crew is acting different since we started him on the Topamax. He acts sedated! Big surprise. I hate it. It makes me feel bad and worry. Shaun noticed a big difference right away. Last time we went Crew was running around in his walker, chasing a soccer ball, laughing, smiling, squealing. Today, Crew was only with us part of the time. He would chase after the ball, then stop and slump down in his seat and stare off into space. After 10 seconds or so, he would kinda stand up and go after the ball again. Its hard to explain but he is definately showing signs of those horrible no good side effects.

Since Crew was feeling really calm we decided to work on raising up on his knees from a kneeling position. Shaun placed bowling pins up on a bench. Crew was required to push through his glutes and legs to raise himself up high to reach the pins and knock them down. After working on this for a while he was making amazing progress. Shaun feels like Crew could get this down within the next month as long as we work on it daily.

Also, Shaun measured Crews range of motion in his legs and noted that his left leg has more spasticity than his right. That is very puzzling considering that his right arm has more spasticity than his left. One would think that one side of his body or the other would be more involved, but that doesn't seem to be the case. Shaun said he has never seen anything like that before and "it doesn't make sense". Shaun also said that Crew isn't like any other patient he has had before. Trying to explain himself, he said that usually when he gets a new patient he can compare them to someone else he's worked with in the past. But Crew is different. His situation different... in a good way but unusual. Crew can "Cruise" in his walker but still has not learned how to roll over. (just an example). Shaun felt that Crew is a child that will continually make progress over the years of therapy and that often times he works with kids who make very little progress.

Tonight. ... a huge thing happened at our house. Did I mention HUGE!

CREW CRAWLED!

It was amazing! We were all so happy. He actually moved himself.... and with no help from me... ZERO, NATTA, NOTHING. He did it all by himself! Those of you who have a child with special needs can understand this huge accomplishment. And for those of you who don't.... well... Crew is 32 months old! We've been waiting for this for a long long time.

We're proud of you Crew!

Neurology appointment plus some

Monday was a long day. We had to be to the NFC by 9:00 am. I thought we were just going to see the opthalmologist but when we got there I found out they had Crew scheduled to see the Pediatrician, Audiologist, Opthalmologist, Speech, Social Worker, and Psychiatrist (uggh). I wiggled out of seeing the Audiologist (already have one), & Speech. The opthalmologist said his eyes are still perfectly straight. Yeah! That is one less thing to worry about.

We busted out of there about 11:30 and went straight to PCMC which is another hour drive. We got there at 12:30 to see our new Neurologist. Dr. F was great! He spent time going over Crew's medical history, examing Crew, and discussing. Because Crew's last EEG was exactly one year ago, Dr. F decided it wouldn't really help much to get another one. Another MRI really wouldn't tell us anything we don't already know, so basically he prescribed a different seizure med for Crew, Topamax. We are weaning him off of the Dilantin for the next two weeks as we begin the Topamax. I'm concerned about the side effects it could be having on Crew... irritability, loss of appetite, dizziness, etc. Also, it seems that Crew just isn't his normal bubbly self. That makes me really sad. However, I'm feeling a bit under the weather tonight so I am wondering if maybe Crew is getting sick... Oh, I hope it's not the medication!

Works For Me Wednesday- STOP

We live in a very fun cul-de-sac with lots of kids. It isn't unusual to have children ringing the doorbell at all hours of the day saying, "Can you play?". I usually don't mind if the kids want to play but sometimes when Crew is asleep or the kids haven't finished their chores/homework or you simply just want some uninterupted "family" time the knocks at the door can be a little annoying. Also, sometimes my kids ask if they can go play with the neighbor kids and I'm reluctant to say yes because I don't want to "intrude" on their family time either. The moms in our cul-de-sac have used the Stop sign method.

Each family has made their own STOP sign to hang on the front door. Our little red stop sign says, "STOP, I'm sorry we can't play". We hang it on the door during those times when we really need some peace and quiet. It works great! Also, I love it that my boys know when it is not okay to knock at the neighbors. Because we are all using the STOP sign there are no hard feelings amongst friends. It works for me!

PCMC tomorrow

Looking forward to seeing your childs neurologist seems very strange. Consequently, I must be a strange person. It's been 3 weeks since the big seizure. Tomorrow is the big day when we can finally sit down with his neurologist and discuss medications, order tests, etc. Yes, I have seen the pediatrician and we are giving Crew 2 doses of Dilantin daily. He hasn't had anymore grand mal seizures but is still having the smaller, more frequent ones which happen 100's of times a day. It is time to get this figured out. I want Crew seizure free! We are switching neuro's and I am feeling confident that this new one, Dr. F, will be able to help us.

Also, tomorrow we will be seeing Crew's opthalmologist. Hopefully, we will get a good report.

Wish me luck!

Honorary marathon "runner"

I love this story about Sam, a teen with CP who is allowed to participate in the St. George Marathon. Sam Eliason is the marathons first "honorary participant".

FULL STORY: http://deseretnews.com/dn/view/1%2C1249%2C650196505%2C00.html

My slump

Blogging is good for me. It helps me stay positive. It helps me sort through my thoughts. It causes me to reflect....

But journaling just wouldn't be right if it didn't include the bad with the good...

I feel sad.
Tired.
Depressed.
Worn out.

I want to go to bed and dream again. Last nights' dream was good. And then I woke up.
The kids are asleep. It's my turn.
I'm going to crash now.
The End.

Works for Me - Topstick tape

This is my first Works for Me Wednesday attempt. Crew got his hearing aids at 8 months old and one month later the glasses. Okay, have you ever tried to keep a baby or toddler equipped with hearing aids and glasses. I know, I know, you are thinking .... um no! Well, I'll tell ya' , it isn't easy! The audiologist recommended this really cool double sided tape called TOPSTICK.

It is actually made to stick a hairpiece to the scalp. Designed for the balding man. It is skin friendly and works great for sticking the hearing aids to the side of his head. It comes in 1" X 3" strips and then I cut them into smaller pieces to fit on the side of the hearing aid (the part that goes behind his ear) where I stick the aids to his head. This keeps the aids right where I need them so that the glasses will sit on top of the aids. I've found that if I don't do it this way either the aids will fall out or the glasses will slip down to the bottom of his nose because the glasses are sized to sit on top of the aids.

Fortunately, I've found this tape quite handy for multiple projects. Crafts, pictures, etc. At Christmas time I use the tape to attach 3 long pieces of pretty ribbon to the wall in a row, vertically. Does that make sense? Then I stick Christmas cards on top of the ribbon so that the cards are displayed in an organized fashion. I love displaying the cards on the wall and it looks really nice with the ribbon as backdrop. Its hard to explain but I actually got the ribbon/Christmas card display idea off of the Today show a couple of years ago and I have loved it. The TOPSTICK has worked great at keeping the ribbon and the cards up on the wall.

I buy the TOPSTICK at the local beauty supply store.

Thanks to Rocks in my Dryer for hosting "Works for Me Wednesday".

The San Diego Temple

We decided to take some time and find the San Diego temple. I had heard people talk about it... how beautiful it is and how it stands out. It's located right next to the interstate. We were driving around trying to figure out which exit to take when we came around the bend and BAM there it was. It is such a beautiful temple and I'm glad we took the time to go. We just walked around and looked at all the plants and the structure itself. S & H were really excited and were asking when they will be able to go inside.... how old they need to be and all of that. It was a great opportunity to talk about why its important to remember to always choose the right and try to be good.
One of the temple workers came out and talked to us. She had a brochure with pictures of the inside. It was neat! Then she recommended that we go to Old Town San Diego and visit the Mormon Battalian center. We took the boys there and I expected them to grumble and complain but they loved it! We watched a short movie about the Mormon Battalian and then S & H got to dress up in some of the old clothes that the men wore. Crew was not impressed! *sigh* 

Mission Beach, CA

I am so glad that we decided to rent a condo on the beach. It was so nice to be able to walk down there anytime to walk around and enjoy. I hadn't been to the beach in ten years and this was a first for the boys.

On the first night that we got there we took the kids down to the beach. It was almost dark. They were running around jumping the waves and gathering seaweed. They would drag the seaweed over to create a giant pile and then run back and get more. I'm sure we got some strange looks from the "others" at the beach. It didn't take
long until cousin C and G were soaked. Then H got wet too! I took off Crews shoes and let him walk around. He loved getting them wet even though the water was really really cold.

We were quite close to the beach but not close enough to see the water from our condo. However, it surprised me how quickly Crew figured out where we were. He loved it there and it seemed he could feel and smell the ocean. When I stepped outside of the condo onto the patio, Crew would lunge and lean towards the ocean. Body language is pretty clear and he wanted to go to the beach.

As a family, we were able to go for walks along the beach in the morning and also at sunset. It was a lot of fun. I am so thankful for the time that we had together as a family.

H was a lot of fun. He has a fun, carefree personality and it is just what our family needed. While walking along the boardwalk, H would be dancing, skipping, or spinning around in circles. He was a lot of fun.
I really appreciated S on this trip too! He is a great kid and is always trying to help out with Crew. I was talking to my brother Kenny last night and we discussed how S is a great oldest child. He is a great example to all of us and I am proud of him for always trying to do the right thing.

Crew loved taking walks too! He is getting really hard to carry because he leans over which makes it feel like he weighs twice his weight.

On the day we set aside for the beach, Carl took S & H down to the water. They had boogie boards and plenty of supplies necessary for building sandcastles. The spent hours playing in the water and along the beach. I so wanted to go and take pictures. However, I stayed behind with Crew so he could take a much needed nap. Finally, after 3+ hours he woke up. We got ready to go and just as I was walking out the door, Carl and the boys returned. Thus, I have no pictures of wet kids and no pictures of the worlds greatest sandcastle!

All in all, the beach was great! I wish we had one more day to just lounge around and be lazy. 

Sea World: San Diego

Sea World was my favorite! I thought they did a great job of making it fun for kids and entertaining for adults as well! This was a first time for all of us. I've heard about all the fun shows and stuff at Sea World but to experience it was really neat. I didn't realize how emotional it could be. I loved the dolphin show and Shamu of course!

S & H had a great time checking out all the sea creatures and riding the rides. They loved it all! We tried to hit all of the shows and I think we only missed one. They rode all the rides that were open and visited all of the creatures and stuff. We even took a ride over the bay. It was short but really neat to see the view of the bay and the beach. The temps were a little cool but not bad. It was about 70 that day which was great until the boys and I decided to ride the rapids. Somebody had the time of their life soaking the living daylights out of me with the water gun. I came out of there soaked to the core. However, the boys thought it was hilarious and we all laughed and laughed.

The pictures are all really cheesy but at least we took some. This is the first vacation we have really invested a lot of mileage and cash for. I'm glad we did it. S & H are old enough to remember and they learned a lot and we really had a nice time.

Taking Crew with us was quite a challenge and also such a blessing. He is the light of the family and we would have missed him if he was left behind. He loved watching the dolphins, touching the stingrays, and splashing in the starfish pool. Because Crew is two... water was definately a motivator and he spent a lot of time with his hands in it.

DH was great with the boys! He took them on the rides while I tried to get Crew to take a nap. We met later at the 4-D show. Crew wouldn't wear the glasses and wasn't at all interested in watching the show so DH stood at the back of the theater with him while I got to sit and relax. I actually had never seen a 4-D show before and was totally caught off guard when the catfish spit water in my face. LOL. Definately an experience you wouldn't want to miss.

 

It's been too long...

I think it's been two weeks since I've had a chance to sit down at the computer. Last week we took the kids on a long needed vacation. We left on monday for San Diego and arrived home saturday night. The kids did quite well in the car. We had rented a condo on the beach which we shared with my sister, her dh and their 3 kids. It was great because we could walk down to the beach anytime we wanted. The boys loved the sand and experiencing the ocean which was a first for them. We spent one day at Sea World and one day at Legoland. More details to come...

The week before vacation was filled with doctors visits, therapy, a visit from Grandpa and Grandma G for two days, a visit from The girly girls, General Conference, and Pack Meeting. Thus the blog has been on the back burner. The girly girls were as cute as ever and growing up way too fast. Grandparents never change. Conference was neat. I felt that the talks were given with much feeling and again left me with the desire to do better and be a little bit nicer, more compassionate and understanding of others.

I've missed the blogging world and will attempt to post some pictures of our trip here in the near future.