The Fabulous Life of Derek and Monet

You’ve Got Character

destinyfay — Sun, 14 Mar 2010 15:50:10 +0000

Yeah I knew it, Steve knew it, EVERYONE who really knows Derek knew it: but on Friday Derek’s school recognized him for it…

We still have not gotten the details as to what he has done to receive this award but he is PROUD and so are we!

Congratulations Derek!

While on Spring Break this week I am making a serious effort in getting some newer pics loaded and give you an update on our life….

Just for Kate

destinyfay — Thu, 11 Mar 2010 05:32:38 +0000

Over the last 6+ years I have been fortunate enough to have become acquainted with a wonderful group of women…I have only met one in real life. This small group is close because we share a very intimate and personal likeness. We have been able to celebrate and hurt together even though miles separate us. Tonight one is fighting for her life and I am requesting you drop to your knees and take a few seconds to pray for her…http://katesaid.wordpress.com/

Kate has been my cheerleader during many of Derek’s battles as well as the few Monet has had to take on. She was the one who came up with the chocolate milk & pepperoni pizza party when Derek was finally discharged after his transplant. Please help pray Kate through her own battles tonight as well as her new son Isaac who is in a NICU at another hospital.

Lord Bless this wonderful woman and her beautiful family tonight and always.

Update March 13, 2010: Kate’s been improving over the last 2 days. Little baby Isaac is still in the hospital where he was delivered and we are unsure when he will be coming home as well. They are slowly decreasing the sedation medications Kate is on and watching carefully how she tolerates it. Please continue to lift them in prayer as well as her husband and 2 older children as they cope with all of this turmoil. Let’s give them strength and feel the love and comfort they so need right now. Blessings to all!

Update March 16, 2010: Kate’s husband just sent a text to one of the women in our group that Kate is awake!!!! She still can not speak because of the vent but she is not in any pain. She had a final surgery yesterday afternoon and it looks like everything will heal up. Thank you for your continued prayers and support for this amazing family. Isaac should be coming home by the end of the week. Blessing are falling all around this family.

Given Permission to Be Proud…

destinyfay — Sat, 29 Aug 2009 02:29:39 +0000

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.

Rank and File

destinyfay — Wed, 26 Aug 2009 15:47:23 +0000

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

Are You Craving Chocolate Milk & Pepperoni Pizza?

destinyfay — Sun, 23 Aug 2009 03:56:22 +0000

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

Planning for a Major Family Overhaul

destinyfay — Fri, 21 Aug 2009 04:51:22 +0000

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!

Shifted to All Day Kindergarten

destinyfay — Wed, 12 Aug 2009 18:06:36 +0000

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.

Changes for the Good and Normal

destinyfay — Tue, 04 Aug 2009 18:41:23 +0000

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.)

Back from the “Happiest Place on Earth”

destinyfay — Wed, 22 Jul 2009 04:52:35 +0000

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.

To The Happiest Place on Earth…

destinyfay — Thu, 16 Jul 2009 18:06:39 +0000

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…