FORGIVE ME PLEASE

He looks ticked off in this picture but he is actually in a really good mood... jamming out to the music at his end of school BBQ.  Crew finished 1st grade and while we have been happy with the school for the most part, we are looking forward even more to next year.  I feel a change of teachers will be really good for him as we struggled with the teacher he had this year.  I could go on and on about our communication frustrations with his teacher and her lack of expertise in dealing with Special Ed but enough said already.  His teacher did not qualify him for ESY and she did not recommend that he attend the summer school program even though he did not pass his IEP goals and tested out at the level of a 13 month old.  The director suggested that I make a case about it but quite frankly I do not want to get all worked up over it so we are going to focus our time on therapy and getting stronger.

Crew is the light in my life.  He is a blessing in so many ways and I am grateful to be his mom.  I am grateful for the learning opportunities that come with being his mom and the growth I have experienced with all of it.  With that being said I have to admit this time in my life is very LONELY.  It feels like there is no one who understands it... the emotional, physical, and financial stress involved.  We are constantly stressed to the max in our home.  It takes all four of us to take care of his needs.  The amount of time involved calming, feeding, therapy, toileting, entertaining... it is exhausting.  Crew's doctor at Primary's is just as perplexed as we are.  Currently he is taking medication to help him sleep and yet I am getting up at all hours of the night.  Several times a week he wakes before 2 or 3 AM and is awake for the remainder of the day.

This loneliness or sense of isolation is hard to ignore and it takes everything I have to keep from getting bitter.  Living in an area where people are generally service oriented and watching people dish out service left and right to each other all the while ignoring our existence.  Well... that's how it feels anyways.  I have uttered countless prayers asking for forgiveness for the negative thoughts that I have about it.  I have fasted and I have gone to the temple hoping for some peace which has helped.  I have made more of an effort to serve those around me and within my church.  I'm trying to accept that we will just continue to go through this alone.

Despite my lack of sleep, I have manged to finish the training program for a marathon that I am registered to run on Saturday.  It has been a rough go this time around.  I've been battling several injuries over the past 6 months.  Still... at this point wondering if my body will hold up for another 26.2 miles.  Even considering getting a bone scan on my big toe which has been bothering me.  *sigh*

So many of you are dealing with disabilities or illnesses which are more involved than what we have going on.  To you, please forgive me.  I apologize for being such a whiner.  I have not posted for months due to this.  It just isn't fair for me to complain when so many others are going through such difficulties.  How do you do it?  Do you have any suggestions for me to get over my loneliness?

A couple weeks ago in my church where I co-teach the 16-18 year old young women, it was brought out in a lesson the importance of journaling.  It was suggested that it is good sometimes to write down the frustrations as well as the good things... for posterity sake.  I hope in doing so I haven't just shot myself in the foot.  If so, it will just be another hard lesson learned.  LOL.

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...

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!

Preschool

Crew started another year of preschool yesterday. Even though he is old enough for kindergarten we decided to send him to the deaf preschool again. We are hoping this year will give him a better communication base before he starts kindergarten.

So far, I can already see the situation is so much better this year. Last year we had problems with fatigue. The day was too long. The school reported that studies have shown the preschool kids don't benefit from a full day. Really, I could have told them that! So, they have decreased the preschool day to only 4 hours. This is still longer than the 1/2 day kindergarten students. Another plus is that Crew will be the last one picked up and the first one dropped off so the transportation time has been reduced significantly. Last year he was the first one picked up and last dropped off. This year they are sending a van (instead of the bus) to pick him up. He rides with 3 other deaf children and they are all so sweet and adorable.

The ride home is just Crew and one other deaf preschooler. How nice!

It's been hard seeing the other neighbor kids his age get ready for kindergarten. They are so excited. They know their colors and letters and can write their names. What a huge contrast to just wanting child to be able to make a simple request like, "water please!".

Carl gave Crew a fathers blessing on Sunday night. We try to do that every year before school starts. Crew folded his arms the whole time and was just so happy. Afterwards we all gave him a hug and when it was my turn he squealed with excitement. I love the way the spirit touches him:)

Most of the time I don't quite know what Crew is thinking. We tried to tell him that he would be going off to school but until we walked outside with the backpack and his walker I don't think he had any idea. He was so excited while we were outside waiting so I do think that at least he knew something EXCITING was happening.

The teacher reports he had a good first day! He came home happy... and that is really something:)

Goodbye July

Once again, another one of my favorite summer months has come to an end. My lack of blogging truly is an indication of how busy summers can be. What happened to the carefree days of summer anyway?

The boys and I have enjoyed the pool several times, a Bee's game, 3 baseball games a week, fireworks, a race or two and lots of Popsicles.

We've seen a change in Crew this past month. His moods are all over the place... giggling from deep within one minute and a full blown tantrum the next. That boy is one passionate kid! I see an adorable boy who only wants one thing... to DO and BE what the other boys are. Like I've said before it takes the whole family and then some to be his legs and arms, his voice. We are all exhausted by noon day and then there are still so many hours to go...

The nights are out of control. He is up 4 or 5 times a night now climbing out of his bed and fumbling around in the dark. He screams and cries and then we go through the whole calming routine to get him to sleep again only to have him wake up as I gently "try" to sneak back to my room. I can get by with 6 hours of sleep but 4 or 5 is really pushing it.

With his passion comes a drive that we haven't seen before. Crew is trying to get up (vertical) all the time now. I can proudly say that Crew officially learned to "pull to stand" this month. He has done it multiple times. The first time it happened I was making dinner. He was in one of his bad moods and I was doing my best to ignore him. Finally, I turned around and there he was standing up!!! One hand was gripped tightly to the arm rest, the rest of his body in flex mode and he was screaming! Startled, I said something like, "Oh, Crew look at you standing up, Look how big you are" as I quickly rushed to his aid. Instantly he started to giggle and then he beamed, so proud!

What will August bring?

Seize the Day

The neighbor boy brought over this awesome sprinkler! Come to find out, they are Super hard to find and because of supply and demand they run about $250 on ebay. Go figure!

WORDLESS WEDNESDAY

Just a quick update

First of all, I want to say "thanks" to my readers (all 5 of you) for your concern, thoughts and prayers on behalf of Crew. Who would've known it would be such a rough year yet we are constantly blessed having Crew in our lives.

I'm going to try and address some of the current happenings with Crew.

Powerchair: The powerchair that was donated to us back in December... then totalled by the airline is now being fixed. The airline paid out for damages but we found out our cost to adapt the chair for Crew was going to be $1600.00. This is the cost of a joystick and a seat cushion. The child who had the chair before us didn't use a joystick. He drove it with a headpiece and the seat is too large for Crew. Consequently, we decided it might be in our best interest to purchase the demo chair instead. The demo chair fits Crew perfectly and since that particular chair is being discontinued we could get it for a good price. Now, we are going through the grueling process of getting insurance to purchase the chair.

Preschool: The move to the deaf school has been good for Crew. His sign language has picked up and he is making progress. The hours are long and that has been a legitimate concern. He is gone all day and when he comes home he is exhausted. It's all I can do to keep him happy until bedtime. On the other hand, the school change has been tough because we don't have as much time with him to work on PT.

Mobility: His hamstrings are very very tight and I'm having quite a time finding time to stretch him. We realized the other day that he isn't crawling anymore. He can still do it if you coax him but instead of roaming the house like he use to, he just sits there and cries until you pick him up. I really don't know if his wheelchair injury is keeping him from moving around or if its just the tight hamstrings. At our last botox appt., we had injections in his gastrocs but not his hamstrings. I think that might have been a mistake.

Social: The last few days have been a pick-me-up as I've seen his mood improve immensely. Crew has been so snuggly and showers us with hugs and kisses constantly. I'm so thankful for this! Outside of family, Crew's social life consists of adults... his PT, his teacher, my friends. It pains me knowing the other neighborhood children are participating in playdates and he is obviously excluded. Crew doesn't even respond when they say "hello" so naturally his circle of friends is basically non-existent. The twins (2-years old) are so sweet to him... I just wish we could develop some basic social skills.

Health: We haven't seen any seizures for two weeks now. Crew is rebuilding his strength since his injury and I hope to see more walking in the future. I am diligently trying to get the constipation under control. It's been really bad and we are using Miralax, Ducolax, Senekot, and enema's. I feel so bad. His eating habits are horrible. He lives off of oatmeal, potatoes, yogurt, pancakes, and eggs. He won't drink juice and fruits/veggies are out of the question with the exception of some occasional applesauce. Most of his food aversions have to do with sensory issues. He is so grossed out by the texture of foods. I'm very worried about his eating. It's frustrating and stressful. It takes an enormous amount of time to feed him and cannot be accomplished without games and distractions. Getting his food and meds down him before the bus comes has been quite the task!

Keep us in your prayers. Love you all!

Seizures and an Injury

It's been crazy around here. On Saturday, Crew was playing soccer in his powerchair and somehow his lapbelt came undone. His foot caught on the wheel and as he is falling out of the chair he instinctively holds onto the joystick to keep from falling. So, as you can visualize he basically ran over himself. I worried all weekend that something was broken and he has a very large bruise (about 6 inches long) up his right leg. His foot is swollen. His PT suggested x-rays since he isn't able to verbalize and could have decreased feeling in his feet (due to the CP).

On my way home from therapy he started seizing. It confirmed my suspisions of other seizure activity on the way to therapy. Carl took us to the ER where they gave Crew an IV with valium, checked his blood levels, x-rayed his foot and leg (while sedated on valium) and sent him home. His valproic acid levels are in the upper therapeutic range which indicates something else may be going on. The neuro was contaced and we've increased his dose for now.

Today he was suppose to be at school but I decided to spend the day with him. I can't tell you how thankful I was to be with him when he needed me.

I'm tired.

A Shout Out to the World

We have been busy here partying! Crewzer turned FIVE! I can't believe it! Just moments after I shot this video we unexpectedly lost our balloons but Crew was so busy CREWZIN that he didn't even notice. LOL.

Today we have another party at the bowling alley. More to come...

The Deaf School.. following your GUT

My tour of the deaf school last Wednesday went well. Carl and I actually feel pretty good about it. At this point, we figure we may as well give it a try because if we don't we will never know...

Crew has attended the preschool with our district for two years now. He has made some good strides but nothing significant. We are still struggling to communicate with him. This past Christmas we received the entire "Signing Time" collection and believe it or not his ASL has taken off.

I was able to observe all three deaf preschool classrooms together for "large group" activity. It was fun to watch the kids interact with each other. Most of the kids have hearing aids or cochlear implants. Many of them have glasses and a few were in wheelchairs. It didn't matter. The kids seemed to all be friends. They interacted well. They communicated with each other. I saw happy happy, smiling, giggling children.

Sometimes when I think about the strides we've made in the last 6 weeks I get kind of choked up. It's my greatest desire to see Crew communicate. And while the thoughts of having him away from home for such a long day make my heart sink, I hold out HOPE that this change will be a good one. We only want what is best for Crew. With that in mind, I made the phone call today that will set this transition into motion.

There is that parental instinct when you decide to do something you never thought you would do. I call it parenting through your GUT. Not that I haven't spent a lot of time on my knees though.

Have you ever made a decision "in the best interest of your child" that you never thought you would make? How did it turn out?

The GOOD and then some of the OTHER.

Crew's wheelchair is here all the way from Texas. Our PT flew to Texas and brought it back with her on the plane. I am constantly amazed at how often we are blessed with people in our lives who go out of their way to help us. This PT doesn't even work with Crew anymore since he graduated from the 0 - 3 program. Two years later she is still watching out for him.

Let me just start by saying the chair was in good condition before it was turned over to American Airlines. Several phone calls were made to AA prior to this trip to determine the best way to bring this power wheelchair home via plane.

To make a long story short, the airline busted it up pretty good. The base is cracked and broken. The headrest, footrest, and armrests are all bent. A complaint was filed to American Airlines so hopefully the insurance coverage for 15K will cover the damages. What a mess! She said the chair came out of the baggage shoot. Uh hello, its a 200 pound chair. What a bunch of idiots!

Crew is excited! When he saw the chair sitting in the garage this afternoon he threw a fit because he couldn't drive it. Fortunately we still have the demo chair here and he was able to "Crewz" around in it for awhile.

I have contacted the Permobil rep through email already. Hopefully he will be able to stop by soon and write up a bill to submit to AA.

And since I don't have a current picture of Crew with his therapist, I am posting one from 2006.

In the Blink of an Eye

When did this baby
turn into a little boy???

Reading Between The Lines

A conversation with Crew's preschool teacher:

Miss K: I'm just calling to see how Crew is doing?

Me: Oh, he's good. Why... did he have a bad day at school today?

Miss K: I just wondered if he wasn't feeling well and/or if he was tired?

Me: Well, he did fall asleep on the bus ride home.... maybe he was tired.

Miss K: When he got to the classroom he just layed on the floor for like 10 minutes. When Clark (deaf therapist) came in and started signing to him he livened up a lot and they started signing to each other. Clark asked him if he was "tired" and (blah blah blah blah blah)... rubbed at his ear....(blah blah blah). I'm trying to learn 3 or 4 new signs a week and use them with Crew. (blah blah blah).

Can you imagine functioning in an environment where your teacher only knows a handful of signs and that is your main form of communication? Can you imagine the frustration, the boredom?

After last weeks IEP, Carl and I have decided its time to take a long hard look at enrolling Crew in the Deaf School. We've decided to take a tour of the school and meet the teachers. Tomorrow I will make that call.

Up for a CHALLENGE?

And because spastic quadriplegia isn't enough of a challenge we have to add boots that are 10 sizes too big.

For yonks we've been stuck in the crawl-around-with-oversized-shoes-or-boots-on-your-hands stage. Constantly we are tripping over the aftermath of Tornado Shoe. Just this week I stood him up and slipped his little feet into a large pair of boots, ya know... just so he could get his "feel". Consequently, he likes this new hobby very much but it involves me following him around. What a guy!

WORDLESS WEDNESDAY

Is it OKAY?

I just finished reading Jacolyn's post on "What exactly is your okay?" Jacolyn also has a child with CP and I've enjoyed getting to know her and her triplets via her blog. I haven't had the gumption to write anything regarding the holidays. Truth is, it's been really hard. I am so ready for school to start bright and early tomorrow morning. I try so hard to be positive but I feel like sometimes "its okay" to share the disappointment and frustration because that is what makes this blog real.

*********************

I remember people telling me it would be "okay" after I brought Crew home from the NICU. I knew in the back of my mind that it wouldn't be "okay". Almost 5 years later I realize the outcome is actually quite worse than I ever imagined it would be. I know that sounds horrible. However, it never occurred to me that he wouldn't be able to communicate. I didn't realize how frustrated and unhappy he would be to sit on the sidelines and watch. The days are hard and long.

**********************

It's a good thing that we can't see into the future. This spunky little 4 year old is determined to experience it all. We bought a treadmill the day after Christmas. The roads here are an icy mess and now with 3 of us running we decided it was time to make that investment. What we didn't anticipate was Crew's obsession with the treadmill. In 9 days I've only been able to squeeze in two good runs on the treadmill because Crew insists on joining me in my runs;) I'm tough but not throw 35 pounds on my back and run TOUGH. If he see's anybody go downstairs he screams and cries until he gets his time on the treadmill. This involves me standing on the sides and holding him upright while he walks at .5 mile/hour (grinning) until he is so tired that his legs are literally dragging. This usually takes about 10 - 12 minutes and then he is ready to give it a go again a few minutes later.

*******************

DOING.

We must constantly be doing something. If you've spent much time around me you've heard me brag about how well Crew is doing with his power chair. There was a day when we didn't think he would ever safely navigate the thing. Still, we have our moments but for the most part he is doing great. Unfortunately for me, we do not have an accessible home and so all his "driving" is done outside. As children typically can be, he does not notice the single digits, the frozen toes or the dripping nose. But what he does see are snowdrifts to conquer and ice hills to climb. He is blissfully happy until mom can't take the cold anymore and calls him inside.... and then he is a MONSTER:)

**************************

Tonight, after dealing with two LONG weeks off from school and therapy I experienced one of God's "tender mercies" as he snuggled down with me and fell asleep. I held him and thanked God for allowing me to be his mother, a calling for which I often feel inadequate. I hope I'm doing "okay" with this huge responsibility. I surely do feel blessed to have him in my life. I too have decided after many prayers and tears-- it's going to be OKAY. I don't know how, I just know that it is.

White Christmas

I chipped away at the ice for over an hour today. The best part about it was having my little man keep me company through it all.

Shhhh.... don't tell our sales rep that we dragged his chair through the snow just for kicks. Crew did surprisingly well but it looks like we'll have to adjust the torque if he really wants to climb the snowbanks;

Crew is really enjoying the holiday lights, the cold, and the snow. The other night while driving around we stopped to look at lights and listen to our neighbors synchronized lights/music. I asked Crew if he "liked" the lights and he signed a definite "LIKE" and then clapped his hands. The sign is coming along:)

WISHING YOU A WHITE CHRISTMAS!

A Generous Donation

Our battles to get insurance to pay for a power chair have been significant! Its amazing how the loaner chair has brightened our little Crew. We have both primary and secondary insurance. You would think it wouldn't be so hard... but that is Utah for you!!!

Last week I received an unexpected phone call...

Another little boy, JJ, who also has CP and is older than Crew has graduated from his little Koala chair to a newer one. JJ's mom wants to GIVE us his Koala chair!!! I am so touched, and grateful, happy, relieved!

JJ lives in Texas. We are in Utah!

Now I am on a mission to figure out how to get the chair shipped here in one piece. This will be much easier than dealing with insurance, I hope! We are so blessed!