Changes

We moved Crew back to the Deaf School today! The past two months have been a roller coaster. We pulled Crew from his class after hearing reports of neglect. We've complained to the principal and also the director of Special Education and the sad thing is I doubt any changes will be made. It is so unfortunate that this teacher feels she is cut out for Special Education because she really should have nothing to do with children.

So Monday we had his IEP and decided to place him at USD again this year. I met the teacher and aide today and felt so grateful for the happy atmosphere there. It was short day today. I will drive him again tomorrow while they finalize transportation plans then he will be bussed.

Halloween is upon us! The pirate costume wasn't the plan for Crew but I accidentally grabbed the wrong size while shopping for H. Now that we have it I am pleased! Doesn't he make a cute pirate? Ahoy, there matey!

Sucky sucky SUCK

My child is severely delayed. SUCKS!

My child isn't making progress. SUCKS!

I just moved my child school districts in hopes of helping him progress. New teacher SUCKS!

I don't think I can trust my instincts. I SUCK!

Crew has not brought home one thing from his class this year. Besides Resource, I haven't seen one stinkin' paper. No art project, no crafts, no coloring cutting or pasting. Crew has not played on the playground equipment at school even ONCE! The teacher has actually parked him in the hall for screaming (which he does when he needs attention or when he is excited).

Not only is he non-verbal but I get rewarded with a handful of hair, a slap in the face, teeth in my flesh....

Oh yeah, and a million kisses when the day is done and again at the start:) I don't know who is more confused... MOM or CHILD.

Summer

It's seriously been so long since I've posted that even I was wondering if I was done! This is the first summer that I've worked during the same hours as Carl. It's been an adjustment leaving the kids home alone. Well.... Crew has respite care about 50% of the time but the older boys are doing their own thing when they aren't taking care of brother.

The boys have been really good. I leave them with their job lists and they always get it done before I get home. We've really taken it easy this summer.. no sports. Just scouting and piano for S and therapy for Crew. H has literally taken a huge step back from playing sports. He graduated from the Cub Scout program early so at this point we are just waiting for him to turn eleven so he can start up with scouting again.

Struggling.... yes, we've really been struggling with Crew-- literally! When he is happy he is absolutely delightful but then we have this other little boy who comes out frequently. This other boy is a fighter, a screamer and he is frustrated. So frustrated in fact that I have the bruises to prove it and hair loss too! It really is becoming a huge problem. We dread taking him out in public so much that we avoid it at all costs. If I have to go somewhere, I usually take S to sit with him in the car while I run in to do my errands. We can't make it through church, the movies, or an outing for icecream. It really is interesting. I keep reminding myself that this is the same little fighter that survived a birth without oxygen, 7 days on a respirator, and six-years of rehabilitation. We have many more to go.... I keep hoping to stretch those happy moments out a bit. (Picture taken on the 4th of July while driving through smoke bombs)

Awwww....

Love these moments... S sharing his brand new ipod with little bro!

California Trip 2010

I think this is the first year that we actually left Utah for spring break. Disneyland and the beach is something I've been wanting to do for a few years now. Disneyland was a first for my kids and neither Carl or I had been in over 20 years.

We got the 3-day park hopper pass for Disneyland and California Adventure, spent one day at the beach and surprised the boys with Angels tickets on the last day.

While planning this trip we went back and forth many times trying to decide... do we take Crew with us or leave him with family. We weighed all the pro's and con's and really tried to think what Crew would want. Leaving him behind is tough because the family isn't complete and we miss him terribly but the truth is that he wouldn't have enjoyed the majority of this trip.

Our respite plan is set up so we can get just that, "respite". We decided that not only did we need the little vacation but the older boys could really use some one-on-one with us.

Our day at Huntington beach was beautiful! It was warm with kind of a crazy breeze. We walked out on the pier, collected seashells, went swimming and simply just laid around.

I don't know what it would be like to take really little children to Disneyland but I was appreciating the fact that my kids were bigger. They really had a good time. Our feet got so tired walking around all day, I can't imagine dragging a young one along.

Now that we have been and know what to expect we are planning how to take Crew along and have it be a good experience for him. I think we will wait a couple more years. It sure would be nice to fly next time and stay in one of the hotels right next to the park.

Can't wait to do it again!

My Birthday

The kids actually spent my birthday at Grandma's. This picture was taken a day early. I worked the morning of my birthday and then Grandma came and picked up H and Crew. Stockton headed off with his scout group for an overnight camp out.

Carl took me to the city where we met up with friends for my first ever Korean BBQ. It's been a long time since we've gone out with the friends and we really had a great time. The company was awesome and the food pretty good too;)Afterwards, we stayed the night at the Hilton. The next morning was the most memorable part of the weekend. Carl and I got up and drove to Memory Grove Park where we headed up City Creek Canyon for a run. The temps were low enough that we had to bundle up but were warm enough once we got moving. We ran a total of 10 miles. As you can see from this chart, the first 5 miles were uphill. Good times!

Phenol Injections

The past month has been crazy around here. The day after Crew's birthday we headed down to Primary's for phenol injections. We've done the botox several times but it just hasn't been making a huge difference so we decided to try phenol. With the phenol you have to be sedated. It was a very minor procedure. They checked us in and we waited in this boring room for about an hour... no magazines, no windows, no toys. I was really feeling sorry for those who have to spend very much time in the hospital.

Once they took Crew back we waited about 15 minutes before we got to see him. He did really well recovering from the sedation. Once he was eating and drinking they sent us home. The nurse got a kick out of Crew's passion for cheetos. He wouldn't take his eyes off the cheetos and the bag was gone within a few minutes. This was great for us because we were discharged quickly.

Phenol was injected into his hamstrings and adductors. Botox was injected into his hamstrings and gastrocs. I had no idea how much the spasticity in his adductors was limiting him until it was reduced. We are seeing a huge improvement in Crew's mobility. Not sure how long it will last so we've been doing lots of walking and physical therapy since.


Little man likes to dress himself;) His shoe fettish usually involves dress shoes and quite often chooses non matching shoes. I got a kick out of the "two left feet" on this particular day. What I will do to keep him happy! *sigh*

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: