"A Walk to Cure Diabetes" Day!

(K, so I'm having major difficulty getting video up...I'll add them later.)

We had so much fun at the Mall of America today joining 18,000 others in walking for a cure for Diabetes. A big thank you to all who joined our team and walked with us AND a big thank you to all who made a financial contribution. We are so grateful for your support!!! Those who could not join or contribute and wanted to...we love you and are grateful for your prayers. With your help, we raised $630.00. Thank you!


We arrived at the MOA quite early-6:30a.m.-and enjoyed no lines. We picked up New Walker buttons, T-shirts, and breakfast - not necessarily in this order. We found our way to the big shoe to take pictures. And then we sat to test, give insulin and eat. Then we waited...


and waited...


and waited!
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Finally...the GO sound!

We're walking...

and walking/riding...

and SOME were still walking.


We stopped for some BLING BLING from "THE GOLD GUYS" who have a shop in the MOA and donated 20% of their earnings to JDRF today.

We found another Isaac with Diabetes in the same color shirt even.
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Then we gathered around the rotunda for a celebration ceremony.

We grabbed a picture with Sharky on our way out.

Matthew keeps saying "yay, they raised enough money to find the cure!" The goal was 1.9 million and I think they got it!

A GREAT DAY!

Week Full of Fun

Wednesday evening Joshua received his Tenderfoot and another merit badge at the Scout Court of Honor.

He got to go skiing for the first time ever this week with the school and loved it!
He also made Honor Roll for the second quarter in a row!


Matthew has had a busy week as well. He enjoyed very much his Pinewood Derby on Thursday.



Here he is enjoying his day off from school on Friday. This is his favorite place to go. We arrived at 8 am and left at 4 pm. He walks right in...makes himself comfortable and gets busy with crafts and anything else they will fetch for him. He even got to meet this cute little dog and won BINGO! He had the growth hormone test which involved fasting, an IV, a whole lot of blood, and a couple of different drugs that made him really sleepy and weak. He was very excited to be able to eat what little fat free food we could come up with when the test was over. It is common to faint after this test for up to 12 hours so Matthew had to be monitored closely and someone with him at all times. His blood pressure, temperature and heart rate got really low so we had to stay extra to watch and make sure they were coming back up. We won't have results for about 4 weeks.






You can see our very abbreviated story and Thank you to Children's Hospital and surrounding clinics by going to
http://www.childrensmn.org/AboutUs/ChildrensStory/

Noah never gets posted about because he is so great and healthy. He continues to do wonderfully in school and can't wait for HIS pinewood derby which will not be for two more years.

And...here is Isaac...in his new glasses...that of course, he is already looking over the top...or tearing them off his face. This will be fun!

UPDATES

Well, we've survived 10 appointments over the last week. One of which was to put the Holter monitor on Matthew to be worn for 24 hours. We have his Caridology appointment on Monday to find out what that had to say. When we went to the Behavioral Specialist at Childrens just before that, they took a blood pressure which was a little high and his heart rate was reading 48. We're hoping it was just wrong and that pacemaker is not coming sooner than we expected. We also have scheduled an all day test for this Friday that will begin the growth treatment process. If the results are what we think they will be...that he has a true deficiency in that area... then we need to see a Nutritionist and an Orthopedic doctor before we can start the treatment. The Child Behavioral Specialist had a great amount of information for us and will be sending us to various other doctors and therapist to continue our work on issues from the Autism Spectrum Disorder and the ADHD. We are excited to be working with them.

Our greatest news this week is our victory at the school. WE FINALLY GOT QUALIFIED FOR AN IEP! This is SOOO exciting! I think it is finally hitting me what this means for us. I'm crying! I've hated watching Matthew struggle so much at school or because of the stress of school after all he has been through...it's just not right! Even the district nurse shed tears and told us she really wanted this for us. It was very sweet. Matthew's stresses will be eased and I look forward to seeing my happy boy back and able to enjoy the life we've prayed for and worked so hard to give him!!!

We anxiously await the Walk for Diabetes this Saturday at the Mall of America joining 20,000 others who are affected by this disease. I think it will be a memorable experience. We thank all who have been so generous to donate to the cause and support us!!!

A BIG thank you to my Mom and battle partner, who came TWICE, for moral support and spoiled us rotten while she was here. Thank you Mom! It was fun to have you here while no one was in the hospital.

Mom took us to dinner on Saturday and we went to one of the few places that actually has food that Matthew can eat...Denny's. We were minding our own business, getting everyone situated, poking fingers, giving insulin, trying to find fat free food to eat for Matthew and making sure they don't cook it in butter or oil, etc. We finish our meal and the waitress says your bill has been paid. We of course said WHAT? She explained that another customer that had been sitting near us paid our bill...we'll never know who she was but we were very touched!

I'll post Monday after our appointment...praying for good news!

I forgot one other bit of news...one of the appointments was for Isaac with the Opthamologist. I'm sure you can guess what that means!? Glasses for Isaac. His eye has been crossing the last few months, pretty badly. He chose the left eye though as opposed to the other 3 boys who chose the right eye. Funny!

2 more weeks!

The JDRF walk is in 2 weeks! It sounds like they are close to finding a cure for Juvenile Diabetes and we are so excited about that! If you haven't already, please consider helping us reach our goals for the walk. You can click on the link to the right. If you already have been so generous, THANK YOU!!!!! We know times are tough for everyone these days. Isaac continues to be a trooper with his shots and has even started doing almost all of the blood testing himself this week. He just needs help aiming on his finger. His blood sugars have been all out of whack though the last 2 weeks and I can't tell you how frustrating that is. It would be so awesome to have a cure in Isaac's lifetime. We did get good news this week that so far there is no sign of Celiac Disease or Thyroid issues with him.

Monday's Memory 20

I’m afraid I let you astray last week by ending with a cliff hanger statement. I really have nothing left to write. “The battle” that I was referencing is the battle still in progress today. Yes, 3 ½ years later, and I still have not learned how to fight and get my way. It has been causing me MAJOR stress and is taking up almost every moment of my life these days. It is still raw and I’m not sure how to explain to you the battle without hurting Matthew.

We are walking a road that has not been walked at our school. Children like Matthew did not use to survive long enough to go to school. The effects from so many surgeries and medications have caused symptoms similar to Autism and ADHD in Matthew. But, because he doesn’t fit either one exactly, nobody knows what to do with him. He is also SUPER smart and so the law says he must suffer. That is NOT ok with me and so we fight on! This is WAY beyond my levels of comfort but I am doing my best to be a voice for my child who is struggling.

I did ask Matthew to think of a medical story that he would like to share. This is what he came up with. He typed it all by himself.

One afternoon, I was very sick and my dad gave me a priesthood blessing and a second later I was all better.

-------------------------------------------------------------------------------------

In honor of CHD – Congenital Heart Defect - awareness week:
• Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
• 40,000 infants are born with CHD each year in the U.S.
(Still, newborns are not screened for CHD’s.)
• Though research is ongoing, at least 35 defects have now been identified.
• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
• This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation

Odds and Ends

Mike wanted it on record that sometimes I'm crazy enough to leave the children with him and they do in fact live. He does feed them and they even make cool crafts.


When shown this picture, Isaac said "Yeah, I lookin for food again."



Joshua was part of a Colonial Museum at school for a social studies project. They worked for several weeks on their assigned topic, making visual aids and writing 1 minute speeches. Parents were invited to come through the museum. Mike and I were THE ONLY PARENTS that came! That was very sad. All of the kids did a great job!


This is what Matthew does in his free time. Any guesses as to what this might be?

You probably guessed right. The all new...COMPLETELY FAT FREE!!!...McDonald's Happy Meal with chicken nuggets and fries.

This is my favorite! I have this picture hanging up by my computer.

It was taken in 2006 (I think).
The boys wanted a re-do with Isaac in it. Here are my 5 most favorite people in the whole world! Aren't they cute?!

Monday's Memory 19

On the second day post-op, before they extubated him, they performed a Bronchoscopy. They wanted to make sure there were no casts in the airways currently because he would be too weak and in too much pain to be able to cough them out safely. They actually let me stay in the room for this one AND let me look down the scope to see for myself. It was very cool! The airways were clear and we were good to go. They extubated and Matthew was recovering well. He was grumpy though. He had a nurse that even went to the extent of drawing Blue (from Blue’s Clues) on the window of his room with the foamy hand sanitizer to try to get him to smile. It didn’t work. I guess he had every right to be grumpy!


Ready to be extubated!

FREE!

Nurse drawing Blue.

"Blowing" to strengthen and clear lungs.

Brothers come to visit in the ICU.

He was discharged on June 24th, then re-admitted on the 30th. Matthew always says he is fine but he was not. A second Bronchoscopy was performed on July 1st where multiple casts were found in different stages of formation. I have pictures of this as well, but again, I will spare you. They suctioned and vacuumed again and again only to get a couple of them out. This explains why so many die from this. Even the doctors with all of their tools can’t get them to let go. They were sent for testing and came back…chylous origin: FAT. Fat, from food, leaks out into the chest cavity. It forms around the bronchial trees and then at some point they decide to let go and Matthew has to cough them out. Treatment: NO FAT diet! Matthew was not at all happy about giving up sausage for breakfast in the morning. I think that is the thing he misses the most.

Matthew coughed several casts out during our hospital stay. The nurses would parade the casts through the halls and show all of the other nurses because none of them had ever seen them before. They were fascinated. Matthew would draw pictures of a scene outside and sing to the nurses…I think it was “Sunshine, on a cloudy day”…he captured all of their hearts. He kept the child life specialists busy always wanting to paint or create something.


Family visiting Matthew in his private suite.

We got permission from the cardiologist to go down to the sibling play area and get some fresh air. It did Matthew some good to see the sun shining.

Reading...does he look like anyone you know?

Wagon ride.

READY FOR HOME...FINALLY!

We were discharged on July 6th.

We did some fireworks at the house with Sara and her boys that were here to help when Matthew came home on the 6th.

We had been trained to do percussion on Matthew. Basically to beat on his chest and back to help the fluid keep moving so they couldn’t sit and form into dangerous casts and cause infection. We did this four times a day, 20 minutes on each side until he healed well enough from surgery to use a machine – the VEST – a month later. He was actually very excited to get the VEST…it’s a neat little machine that only cost $18,000. Thank goodness for insurance!

Matthew and his VEST.

It was Matthew’s 6th birthday on the 13th of July and we celebrated as best we could. Some very good friends of ours spoiled him rotten with gifts and a wonderful fat free cake that he got to decorate himself with all kinds of candy. He was so happy.

Matthew's awesome FAT FREE birthday cake.

Another summer was gone. The signs of “everything” were beginning to show through now that his life was safe. Our next battle had begun and we didn’t even know it yet.