Today I picked up Derek from school early. I could not wait to be there and luckily they had finished early and were  ready for their parents as well. As I entered the Kindergarten Playground his teacher greeted me at the gate with Derek and told me that he had a great day!! She also told me that he has been her big helper in class with a new student who does not speak any English. She told me that I should very proud of him. I am always proud of Derek but it is great to see others, especially his educators, able to see through his shyness and see what a wonderful little person he truly is. Anyways I walked away with my little boy on ‘Cloud 9′ knowing that he is just as spectacular of a person as I always knew. *SIGH* a little bit of peace in our home.

So I haven’t joined in the Madhouse in a long while…life happens. Today’s topic was on High School Rank’s and such but I figured I am pretty steamed and even disillusioned by the public school system when it comes to Derek and it really did fit.
Derek is smart, there is absolutely no question about it. He could not hear but learned to speak by reading lips and his vocabulary exceeded his age, he just had a lisp. When we found out he needed hearing aids I was devastated for a million reasons but I thought that the school system would see how intelligent he was and work hard to get him up to speed and meet his educational potential…HA! how wrong I was!
Over the weekend I attended an meeting on IEPs (Individual Education Plan.) I brought all of my paperwork with me in hopes that I would be able to pat myself on the back seeing I advocated well. We got about an hour into the seminar and I was in tears and felt like a complete failure to Derrek. His special accommodation “Provide written instruction,” he is in Kindergarten and can’t even read! I asked repeatedly for an FM system and let myself be talked out of it, then I heard what an FM system can do and lost it. Here is a link to show you what it sounds like with hearing aids in a classroom then using old Fm Technology and the new Dynamic technology (which Derek’s school had purchased.) http://www.phonak.com/com_professional_fm_shools_phonak_english.swf
I can see this benefiting Derek in his education even at a Kindergarten Level. I know he could hear his speech pathologist better with this type of technology and yet I have to prove how it will help him!?! How can I prove a darn thing if they won’t let him use it. If I had several thousands of dollars I would buy a system myself to use at home as well.
Had Derek never lost his hearing I am sure that he would be reaching his full potential and reading already. I also learned that children with hearing impairment are typically lower level readers due to their lower vocabulary but their texts in school continue to expand and teach new words and hearing impaired children often get left behind. Once any child reaches an 8th Grade level in reading they are no longer assisted because they can perform “normally” in society with a reading level that low. Arizona already has the lowest testing schools in the country, we have the lowest funded schools in the country as well and then we have the throw the kids under the bus attitude to top it off. No wonder we can’t Rank even in the middle of the road in this country. As the economy continues to decline, sorry economists I will disagree with you on this, education budgets in our state are the first to be sacrificed as well many of the “special programs” for children and the disabled. I am beyond frustrated with all of this and I will have to really dig my heels in and fight for him some more against people and a system that is supposed help him and all children.

Madhouse again, and hopefully some of the other posters have happier, or at least less bitter, high school stories…

* JMLC
* Baino
* Heather
* Be This Way
* Alli
* Aitara
* Fraught
* Heather
* LeeAnne
* Kate
* Patty

Guess what next Sunday, August 30 is Derek’s 2 year Kidney Anniversary! Can you believe it? It seems so unreal that every day prior we were so scared if Derek would wake up the next morning and now we live what we think is a pretty typical life. I remember how nervous I was 2 years ago, wondering if I would still have beautiful little boy in a week and would I end up a widow because my husband was a selfless man. Luckily I never had to realize my worst fears and we are ready for yet another wonderful celebration of life. More to come on this story next week. Remember!! Done Vida – Donate Life

So the last few weeks have EXTREMELY stressful on me so much so that I haven’t slept for more than 3 hours a night and have become borderline addicted to coffee, just to prevent me from falling apart from pure exhaustion. See I interviewed with a local health company for a very special nursing program and was accepted. I am thrilled, I finally I have an opportunity to finish my nursing degree and enter a career where I hope to make an impact on the treatment of patients, their families and care partners. But as excited as I am I feel torn and sad; I will no longer be a Stay-At-Home Mom, watching my children grow and experience the world around them; seeing the things I have taken for granted all of these years through the eyes of a little one. I am mostly sad because I was home with Derek until he started Kindergarten but will be leaving Monet for what seems to be the next 16 months, just in time to send her off to Kindergarten (ok I’ll have 5 months but I’ll be working full time too.) I know that I will be providing my kids with a better life and become financially stable at time when it looks like that may be the opposite for the rest of the country and even the world. Anyways all of us will be adjusting to some major changes here and I am sure it will be with much resistance from all sides. Wish us luck!

Monday was Derek’s first day of all day Kindergarten. Hew did AWESOME! He was happy to spend the day with his classmates. He did start to stress and show tears when he got back to class after lunch not knowing what the routine was but he quickly got into the swing of things and was tear-free on Tuesday. Monet tells me often that she misses him already, even though I have found several activities to pass her time away. So I guess he is no longer my baby and I will have to try to see him through different eyes now.

So I wanted to let you know how Derek’s Annual visit for his Kidney Transplant went…

GOSH DARN PERFECT!!!!

His labs turned out great despite our Disneyland “misadventures” and diversions. WHEW!!! He saw one of his favorite doctors, Dr. J.J., however Dr. Singer was on vacation but we left her a homemade card with LOTS OF PICTURES!! He was removed from another medication. He has been on an antiviral since the transplant and they finally determined that he no longer needed it, as long as he stayed CMV free (we know that he will eventually be on it again once he does contract CMV (shoot 98% of us have had it and carry it in our bodies.) But for now it is one less expense for us and another medication he doesn’t need. Remember August 30 is Pepperoni Pizza and Chocolate Milk if you want to share in the party at your home!!!! Again, Kate thank you so much for doing this in 2007, it will be our family tradition FOREVER!

More News of the Normal

Last week Derek also started Kindergarten…I can’t believe that the last 5 years have gone so quickly and here we are seeing the fruits of our struggles and all of Derek’s strength and courage materialize in him going to school & on time with kids his own age. I have to say I think I couldn’t be more proud as I walked out of his classroom with the warmth of his hugs and kiss lingering. Steve and I did a good job and I felt it then and there, though I fought the tears back as hard as I could as I left. I miss my baby boy but he will be an amazing man one day and I can see it already. His first week was great!! He really likes and trusts his teacher which makes me feel comfortable in leaving him in her care. Right now he is in 1/2 Day Kindergarten but he wantsto spend all day there and have lunch with his friends. We took him to Wal-Mart last week and let him pick out a lunch box, thermos and bowl and have accepted the fact that he will be attending all day classes in a couple of weeks once he has fewer doctor appointments (he has had 3-4 a week the last few weeks.)

So some additional things to remember when going to Disneyland…

1. Great shoes and if you will be there more than 1 day bring at least two pairs. There is a TON OF walking and standing you will be doing and a great pair of shoes is ideal, if you are anything like me as well sweat makes your shoes unwearable the next day so have the option for a dry pair each morning.

2. Extra socks should always be around

3. Comfy slippers or super soft socks at night when you go to bed. After a good rub down with lotion slipping on some good socks will make those toes ready for another day.

4. If your kids are young get a sitter or grandparent who goes to bed early to come with…a little grown up time away from the cranky kids will be needed after a few days of sleep deprivation.

5. Bring a cooler that you can throw in a stroller or carry easily. Food and beverages are pretty pricey-ok ridiculously expensive!!  Also make sure your hotel has a freezer and fill it up with bottled water every night. Pack some meal supplement bars and trailmix along with lots of water…unless you are willing to spend lots of money on food and drink…I’m a cheap-o so I packed.

6. Become familiar with the location of the First-aid Station. It is filled with some really wonderful registered nurses as well sa great place for medical attention or the needed tylenol or advil after lots of fun on crazy rides with screaming people.

7. Positive attitude. Wake-up every morning telling yourselfyou are going to the Happiest Place on Earth and remind yourself often, especially when you are waiting for the fireworks, parades or what-ever-show and a rude woman/man pushes you or your kid out of the way (or as our friends case steps over your kid while carrying a stroller.)

8. Make sure you and your kids always keep your hands to yourself and off of walls bookshelves or whatever…you may get hooked or grabbed. Just ask Derek’s left hand. If it is dark watch even more carefully.

9. Escape and be a kid again. Experience the sites and sounds with your children or grandchildren. Enjoy each attraction and ride and become a part of the fantasy it makes so much more fun. You find being positive easier and you say hello with a smile to nearly every stranger you meet.

I’ll post the annual transplant follow-up appointment outcome soon.

that is where we are headed today!! The kids had swimming lessons & Monet swam by herself 1/2 way across our pool ALL BY HERSELF!! I am leaving in just minutes to take Derek to his KIST Testing, Kindergarten Test to test where the child falls before the year begins. He also gets to sit down and talk with his new teacher for the first time. Then we are on the road! We moved Derek’s annual transplant follow-up to July 20 so he would not miss any school and decided to make it another mini family vacation.
Words to the wise when going to Disneyland…
1. Shop around for tickets or if you know someone in southern California have them purchase them for you, residents get a discount.
2. When getting a hotel we use www.Priceline.com we select the highest star rating and name our own price starting at $30. We are staying at the Crowne Plaza Anaheim for $50/night! We also do the same for car rental too getting a good sized car or SUV for under $20.
3. Always call 1-2 days in advance of your arrival to confirm your reservation at the hotel. Make sure you put in your request for 1-2 beds in a room, etc.
4. Try to go during off peak times. Unfortunately we don’t have much choice because of Derek’s school and doctor’s appointments but we found out that Tuesday, Wednesday and Thursday are the slower days BUT this week EVERY SINGLE HOTEL WAS COMPLETELY BOOKED…wish us luck!!
Let’s see what I come up with in the next 5 days to add to this list…

Madhouse Wednesday again so I’m jumping in hopefully with a bit more of an even flow than last week. This week’s topic is ‘In the Kitchen.’

I am not a fantastic cook, I prefer to grill, if you can throw it over a flame I am all for it and usually it turns out pretty darn good.  The times I cook in the house Derek and Monet love,  I MEAN REALLY LOVE, to help in the kitchen. Steve and I really have issues with safety but lately I have started throwing some caution to the wind and have them enjoy small culinary tasks, I figure they will never be comfortable to try new things and more excited to eat unless they help prepare meals. Luckily both kids have  pretty adult palates so we have been able to spring some pretty awesome food into their diet, mom is more of a finicky eater than they are.

I have the kids help with everything, from collecting the ingredients and tools needed, measuring and mixing and of course clean-up.  I try to monitor the baking and hot stuff but I have on occasion let them stir over a burner (oh don’t tell Steve.) I also REFUSE to let them handle raw meat but I hope to get them to a point to help with that as well ( you know transplants and certain bacteria just don’t mix well at all.) For Monet’s 2nd birthday we bought her a little play kitchen and most days where I am working in our kitchen without her, she comes in to tell me she is cooking in her kitchen. She is usually baking a gum drop cake or something of the alike. I love to see how creative they both can be in our kitchen or with just their imagination in the play kitchen. I believe it has opened their ability to try new foods and avoid many of the “picky-eater syndrome” you here of with kids their age. We have played up pancakes and waffles throwing in fruits and chocolate. We are to top them with a variety of things as well. We stick all kinds of stuff in our grilled cheese sandwiches and also make our own version of “pigs in a blanket.” We play with vegetables and they choose their vegetable for almost every meal. Their favorite is a Normandy Mix with Cauliflower, Carrots and Broccoli. They also LOVE stir fry. They dig through hoping to find water cress and baby corn but they also identify all of the others while they eat them. Another big success and extension to our kitchen is our garden this year. We have shown the kids how to plant a seed care for it and then harvest & enjoy the wonders of fresh produce, though this seems more of a treat for mom. Giving kids a front row seat and even a part in meal preparation in the kitchen can create many life long advantages and wonderful memories. If you have kids I say pull a chair or step stool up to the counter and let them at it…you’ll never forget all of the fun and wonderful discoveries you make together.

So are you going to jump into Madhouse Wednesday??? Let’s see who else does….

• JMLC
• Baino
• Heather
• Be This Way
• Alli
• Aitara
• Fraught
• The Three Bucketeers
• Heather
• LeeAnne
• Kate

So i am quickly throwing this together this morning/afternoon but I decided to join the weekly ‘Madhouse’ of Kate and all of her loyal readers/bloggers…

This Wednesday’s topic is ‘Someday.’

For Monet I expect her to be all the girly girl she is and plant flowers in the world be it literally or figuratively. She has the gift of seeing the beauty in the world and sharing it with others which I hope she holds onto forever. She knows her dreams matter and she has the confidence and strength to take her dreams and make them her reality.  She can take on difficult challenges  and hold her head up high with each choice she makes, regardless of who agrees with her.

I see Derek living a life just as any other person with no medications and a kidney all of his own with no worries of rejection or failure. He is able to hear the world as I do with no hearing aids. He can also excel at anything he puts his beautiful mind to. He can be the deputy, mechanic, doctor, landscaper or traveling guy that he imagines everyday with no restrictions because of medical issues. Finally have the chance to embrace all that life has to offer even maybe a family of his own…SOMEDAY.

Now we have to be patient and wait plus demonstrate all of those qualities at home so they can model them. Geesh who knew a GREAT ‘Someday’ for our children would be so much work for the parents.

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Check-out others participating in Madhouse

• JMLC
• Baino
• Heather
• Be This Way
• Alli
• Aitara
• Fraught
• The Three Bucketeers
• Heather
• LeeAnne