6th Birthday

Today has been a very very good day. Crew woke up with a smile on his face and it has stayed there all day.

At his school they combined all three preschool classes for a birthday celebration. I sent ice cream. As soon as I opened the door to get him out of the van, his little friend turned to me and signed, "Ice cream at school today". Well, at least thats what I got out of it with my limited ASL knowledge;)

We did the "tie the balloons to powerchair" tradition and let him parade back and forth through the cul-de-sac. Its my way of letting my non-verbal child shout out, "HEY EVERYBODY, LOOK AT ME... IT'S MY BIRTHDAY TODAY" which is what I think he would say.

Today was a beautiful sunny day... dry roads and clear skies. Completely opposite of the day Crew was born SIX years ago. So unlike the blizzard conditions that nearly cost us our lives on February 4, 2004. It's impossible to celebrate a day like today and not think about it. I do get sad when I think about all that we've been through but today hasn't been like that much. I feel so much gratitude for having Crew in our family. Gratitude for the sweet spirit and light he brings into our lives. Gratitude for all that I've learned on this journey. Gratitude for the person this experience has molded me into. It has made me stronger and more sure of myself. I don't take the little things for granted. Every little noise or gesture he makes is noticed. I've learned a language not taught in books or in school, a language that can only be learned by living it. His eyes, facial expressions and body language speak volumes. It isn't a language we learn by choice but necessity. I'm so grateful for his hugs and his kisses.

Crew, it's been a great six years. I can't wait to see what the next six will bring. Oh, but not too fast little buddy...

Snowbasin Dew Tour

A couple weeks ago we went to Snowbasin to watch the Dew Tour. This was my first time visiting Snowbasin other than the night we ran the Wasatch Back. Most of our state has been stuck in an inversion. The ski resort was high enough that we climbed right out of the inversion and into the sun. It was so nice to spend a few hours in the sun. Seriously, I think these long Utah winters can really get to you!

The event was completely free... we even got to ride the high-speed quad up to the half pipe. We climbed up and stood to the side of the half pipe. It was really neat watching the skiers fly up over our heads.

I couldn't believe how many people were totally unprepared for the snow. Probably 90% of women had on Uggs or some knock off or another. Those boots totally suck in the snow and ice. LOL. I really got a kick out of watching these women struggle to climb the hill. Gosh, that really makes me sound cruel doesn't it! Every single time these boots would either cause her to cling to the makeshift fence for dear life or slide down on their backsides.

The boys walked away with lots of free samples... this and that- Beef jerky, Utah Ski stickers, pizza rolls, chapstick.

This guy flew up over our heads and said "hey" when he saw us standing there. Totally cracked us up!

Sheesh, If we had known this giant chipmunk was going to be there we would have totally brought Crewzer along with us. LOL. At least he's warm;)

IEP goals and other random facts

Crew had his annual IEP last Friday! I feel quite good about his IEP team. The PT and OT were there, audiology, speech, special education teacher, and a representative from our home school district. Everyone seems to have Crew's best interest in mind. Creating goals and finding the best fit can be a challenge as each year creates a larger span between him and his peers.

I hate putting it in writing but part of being real is facing the facts... Crew is testing 1 year 9 months in language! This score included sign, verbal, eye gaze, and eyebrow movement as language response.

Crew will be SIX in a few weeks.

*sinking heart*

The school audiologist had another scare for us. At the most recent hearing test, results showed a profound loss in Crew's right ear which means he basically did not respond.

*gulp* and *breathe*

When this was brought to my attention I tried to joke around a bit... "I've been talking in the wrong ear", I said. It wasn't funny.

On a positive note, there is a good chance Crew just wasn't in the mood to be tested. He may have been ignoring the sounds, just because. Sometimes Crew folds in half or shuts down when he isn't happy about something. I'm thinking this is probably what happened but there is always the fear that his hearing loss will continue to progress. More tests will be done again soon.

We elected to keep Crew in the deaf school for another year. I will post his 2010 goals here later this week.

SNOW CONES?

Keeping Crew entertained over the holidays was interesting. I didn't feel well and he didn't either. We've both had this horrible cold for almost 2 weeks.

One morning I went out and scooped up some fresh snow, brought it in the house and we played. At first Crew wouldn't touch the snow. He is very sensitive in the sensory department. By the time we were finished he was chucking handfuls of snow at everybody. Good times!

Extended

The truth of the matter is... I really enjoy spending time with our extended families. Unfortunately for me, it seems we spend less and less time with them as the kids get older. Without getting into the details of "why not", I do want to document the time spent with both Carl's family and mine. The day after Christmas we traveled down south to spend time with Carl's family where we celebrated Christmas and his parents 50th wedding Anniversary. On the 29th, we traveled north to celebrate with my parents, siblings, nieces and nephews. Both parties were a lot of fun and I really enjoyed being together.

Here is a random mixture of family pics from both parties:

Long Time

In 3 1/2 years this is the longest I've gone between blog posts. I really kind of miss the bloggy world. We are doing well....

S is enjoying school this year, just finished the first trimester. Currently he is working on his science project, "How Does Caffeine Affect Blood Pressure?" The results will be interesting. We need to find young boys whose parents are okay with them consuming 24 ounces of Diet Dr. Pepper in an hour.

H has been blessed again this year with a great teacher. He is enjoying cursive writing and outside of school is working on his Arrow of Light award. Arrow of Light is the highest award you can earn in the Cub Scout program. We are well on our way and his birthday isn't until August.

Crew is still attending the deaf school. We are seeing some progress with him not only in sign but also Pre-Speech sounds. Lately, he has taken more of an interest in books... a little less chewing and stacking... Oh, I think he finally realized there are pictures on the page. LOL. We are FRUSTRATED in the sleeping department. Every night I end up with him in his bed which consists of a crappy mattress on the floor. My back hurts so bad in the morning and my hands are usually completely numb. The other alternative is to get up with him 3 or 4 times a night so I finally caved and just started sleeping with him once he wakes the first time. It seems Crew has outgrown his AFO's again. We are going for an overdue visit with the PT on Tuesday. I'm hoping he will be able to adjust the braces somehow.

The Thanksgiving holiday was great. Carl's family came for the day. We had 22 people in my little house. We don't get to spend much time with them so it was well worth the effort.

I'm still running nearly every day. The last few weeks have started getting pretty cold... sub 20's. I realized this year that I've enjoyed November a lot more since I started running. You never know what weather you will get in November and its kind of exciting. One morning I actually came back home and changed into shorts, some mornings are freezing, windy, sometimes ice. It's an adventure that reminds me to get out and live and one of the few things that helps me get through the day.

Crutches

Somebody sure is having fun!

A History of Sorts...

During the first 12 hours of Crew's life the NICU staff noted his first seizure. I was notified the next morning, and to tell you the truth, I really doubted that what they were telling me was true. Carl asked specifically what they witnessed and they said "his eyes flickered". Immediately he was started on an anti-seizure medication. I always questioned whether or not it was necessary.

After a year he was seizure free and we took him off the medication. Things were good for a long while but by the time he turned TWO he was having hundreds of myoclonic seizures each day. The seizures were only 1 - 3 seconds each. The neurologist suggested keeping him off the meds so long as the seizures weren't putting him in danger or slowing his development. I kind of chuckle inside now thinking about that statement. I mean, after all... we are dealing with a child who suffered a hypoxic ischemic injury at birth. Of course there will be delays and I have no way of knowing how much the seizures have contributed to that, if at all.

The avoidance of medication came to an end after he suffered yet another "type" of seizure... his first grand mal in October of 2006. Since then, the seizures have been controlled with some break through seizures every 6 months to a year.

The past two weeks we have seen a change in that pattern. His seizures are becoming much too common around here. A blood draw yesterday... and today I'm waiting for a call from the neurologist. I've discussed the situation with our pediatrician here. So far it looks like we will have to introduce some new medication but I'm waiting to hear what the neurologist has to say.

I'm not quite sure what point I'm trying to get at here. Normally I can go along with this crazy life and be just fine but the last two days have been tough. I can't think about it without getting upset. Yesterday, I cried during my 5:00 am run and it had nothing to do with my knee:)

Labor Day Weekend

It's been two years since we've been to Powell. We've been looking forward to it all summer. I thought it odd that we waited all summer to go and then 3 days after school started I pulled my kids out for a vacation. Well, that is the week we had for our houseboat so there you go!

This year we didn't take a powerboat. Instead we had 3 wave runners. This was great for taking the kids out on short rides. Taking the wave runners out in the main channel during the day was crazy. It was so choppy, therefore a really rough ride. Carl and Crew went out for a long explore and Crew fell asleep. He loved every minute of those rides but it sure did wear him out.

Lake Powell is great for just taking it easy. The weather was perfect... not too hot or cold.

One of our favorite things to do is sleep out under the stars on the top of the houseboat. One night we had a few raindrops but other than that it was perfect.




The boys loved fishing this year. There's nothing like sitting on the back deck hour after hour... at least that's what they say:)

Keeping Crew entertained was quite the physical undertaking. He either wanted to be riding the wave runner, swimming, hiking or eating junk food. By the time we came home I was ready for another chiropractor treatment. This is due partly to the lack of running, packing Crew, and sleeping on a crappy foam mattress. I cringe even typing the word "mattress" because it really doesn't qualify as that. Sheesh, I must really be getting old.

Great water temps. I crammed in my long run (17 miles) the night before we left. I knew I wouldn't have a chance to run there so my jogging belt became my friend once again. I got in the water a couple different times and ran and ran until I was extremely bored. You really don't go very fast or far when deep water running.

Crew seemed to be a little more comfortable in the water with his dad. Daddy's boy!

Hunter knee boarding in the main channel. Crazy kid!

Oops... don't forget to go home with a picture of myself! This is the only one;)

MY THREE

I can't believe here we are starting another school year. Its kind of sad that they are growing up so fast and then again.... I'm just loving this time with them. Stockton is a 7th grader, Hunter in 5th, and Crew, my preschooler. Three boys, three different schools, two different school districts. Crew is bussed to another school district where they can better accommodate his needs. All three are gone by 7:30 in the morning and then I'm off to work my 4 hour shift.

Yesterday I met with Crew's teacher. She is new this year and it is her first year teaching but I'm so excited to have her. Crew has been happy so far. He is imitating many signs during class and at home. The kids in his class are interacting well with him... helping push his walker (not necessarily a good thing though;), bringing him toys, etc. Two years of preschool already but I really feel like this year is OUR YEAR! Please don't quote me on that:)

Stockton seems to be much happier this year at his school. He comes home with a heavy backpack everyday... daily math and science homework but he does the work efficiently and then he is off to play. We are looking for a new piano teacher for him this year.

Hunter and school don't necessarily get along. We are working on getting him on a better schedule. He just wants to sleep in... never did that in the summer though. They've been brushing up on their cursive writing this year and I have to say I'm impressed. His writing looks really nice.

The days are definitely getting shorter which is sad to see... but then again it does help that its dark when bedtime rolls around. I have my scheduled 20 miler for Saturday morning and a RS Lesson to prepare. I should probably get some shut eye.