Thank you

I want you all to know how grateful I am for you and your sweet notes!!! I am so blessed to have such amazing people around me!!!! I was told this morning from my very sweet sister in
law how pathetic my last entry sounded. wink! Yes, it was pretty bad I will admit BUT it was fun to see all of your kind responses to a hard night and a discouraging morning. Collin tends to have waves with his illness. Summer is always BAD!!!! Due to the high UV and the heat he has a very hard time with seizures, hair loss, behavior, and regression. So, when Collin has consistent BAD days at unexpected times/ seasons we tend to worry that it means that there has been progression of the illness. Collin has LOTS of "issues" but the biggest are seizures, pain, and the scariest is what is going on in his sweet little brain.

Collin has demyelination in his brain. This has happened over time and with each new MRI we have noticed it's growth "taking over" a new area in his brain. Demyelination is the the loss of the myelin sheath insulating the nerves, and is the hallmark of some diseases. Sufferers of this can also suffer nerve damage if the condition is not diagnosed quickly. Sub-acute combined degeneration of the spinal cord secondary to pernicious anaemia can lead to anything from slight peripheral nerve damage to severe damage to the central nervous system affecting speech, balance and cognitive awareness. When myelin degrades, conduction of signals along the nerve can be impaired or lost and the nerve eventually withers. So, what does that mean you are asking? Well it's not good. At one point in time my sweet little boy had a vocabulary of about six words as well as some signs. All of sudden those words were taken.... it didn't make since. He seemed to making such wonderful progress. Then at the same time we noticed Collin having hearing problems. He had many hearing tests and he always passed with flying colors. So, what was happening with Collin? The lack of myelin was taking of the T2 area of his brain. The communication area. This is what caused Collin to loose his hearing and communication skills. In our last visit to the NIH they noticed that the optic nerves of his left eye were "being taken over" (for lack of a better description) and will most likely cause him to loose all vision in this eye. Then we just wait to see if it will happen in the right. Yes, in other words this part sucks!!!!! There is nothing that can be done to stop it or re-grow the myelin. Research is being done BUT it will be a long time before anything hopeful is found. As I am sure you are all well aware of, the nervous system controls everything. So, as the demyelination progresses and rages war on his sweet little brain it terrifies Jason and I. Any new change in his behavior, seizures, or health make us wonder. Oh, what is going on now? The fear is that some day it could/will effect the nerves that control his organs, effecting the function. I think you all know what I mean and don't choose to say anything else. I just hate to think about it!!!

Now that you have all had a lesson of the day on TTD and understand it a tiny bit more. I hope it explains in some way why I get so worried, nervous, or stressed out when Collin's seizures and pain filled nights become more frequent with out any logical explanation as to why it is happening. Collin has an MRI every 2-3 years. You can not do MRIs to frequent just for the simple fact that it will be hard to notice the difference in images. Well, it is time for an MRI and I am paranoid.... scared.

So, I will conclude this bio-chem lesson with a huge THANK YOU. Thank you for being so concerned about my little man. Thank you for loving me and worrying about my sanity on hard nights. Thank you for your prayers and love. Thank you for listening and just letting me know that you are there during my tired sleep deprived rants. Simply put ... thank you!

Last night was hard. Collin was in so much pain. There was nothing we could do. Our day started at 4 am. I am not saying these things for your pity. Heaven knows this is not the first BAD night we have had and unfortunately it will not be the last. So, to all of you that happen upon my little corner of the blogging world.... "stalkers", first time visitors, family, friends, or who ever you are let me know you are there. I just need a pick me up of sorts. So at the beep leave a note....
BEEP!!!!..........

It truly is the little things

This morning was so amazing. My two sweet children played together all morning. Regan was being VERY sweet to Collin and he was loving every second of it! They played kitchen and made gumballs in her room. Yes, I said gumballs???? Who knows. Then they played Mommy and Daddy. Her version of Mommy and Daddy was Mommy pushing the shopping cart around the house "shopping" and Daddy following her around. Too cute!!! Jason and I both kept calling each other into see what they were doing now. Like when I walked in the living room and Regan had her crayons and coloring book out and was hand over hand helping Collin color. It was such a heart warming feeling to see Collin "playing" with another child. More importantly playing with his sister. I don't think Collin had a clue what they were playing BUT he loved the attention that Regan was giving him. They both had the biggest smiles on their faces. It really is the little things that just make my heart smile!!!!

Now, I want to share with you what happened this evening. In no way do I want to take away from the sweet moments that they shared in the morning but Regan again touched our hearts tonight in a different way. Collin started having seizures and was in a lot of pain. It was so frustrating for us all after we had such a beautiful day. Regan said our family prayer tonight as she sat in my lap and Daddy was taking care of our sweet boy. In her precious prayer she said "Please help Bubba that he feels better tonight. Please help Bubba that he wont throw up or be sick so he can come to my birthday party." Jason and I both opened our eyes with tears. Regan's birthday is in 11 days away and she is already worrying about whether or not Collin will be sick that day. Last year on Regan's B-day it was VERY hot and we had it in our backyard. Collin had to stay inside with the AC the entire time and ending up having seizures. So, here is my sweet little baby girl already thinking about whether Collin can participate. She has such a HUGE heart. She makes me so proud in so many ways! She gives me strength to endure my blessings. I feel pretty darn blessed and am so grateful for the little things in my life!

Easter fun day 6

Saturday Regan's advent egg had a clue. Yes, a clue not a note. wink! The first clue took her to the next clue in the house. After she found five clues that took her all over it finally lead her to the laundry room where her and Collin's Easter Baskets had been left by the Easter bunny. Then we had a fun little Easter egg hunt in the back yard. It was LOTS of fun!!!!

Easter Fun day five......

Friday morning Regan woke up and found her advent egg right away. Inside the egg was a note that read.... go on a camp out with mommy in a "real" tent in the living room and have a funky junky night!!!! Funky junky night is when we get to eat a bunch of junk food that we don't normally eat... pizza... popcorn... candy!! Daddy set up the tent for us and set it up so that we could see the tv from our door. Once we settled in with our popcorn we watched Easter beagle charlie Brown. It was such a fun night. We were up way to late and Regan woke up much to early BUT I would do it over again in a heart beat. When Collin woke up in the morning he joined us in the tent. The kids had a very fun way to enjoy their Saturday morning cartoons. Here are some of our high lights from the night......

Easter Egg Hunt part II

I was able to go and be part of Collin's egg hunt at his school. Instead of packing his plastic eggs with jelly beans and chocolates. I filled them with sensory items. I made Sensory eggs!! What are sensory eggs you ask. Most of the kids in Collin's class are tube fed or have to have their food pureed. So, giving them a bunch of candy just doesn't make sense now does it. I made these fun eggs. In each egg there is something to do with one of their senses. A pretty flower to smell, feathers to touch, shiny diamonds to look at, play dough to squish in their fingers and more. You get the idea. Collin's teacher also had these wonderful eggs that beeped... I mean the BEEPED! We had people come out and wonder if an alarm was going off! wink! These eggs are for Children that are visually impaired. So, even if they can not see the eggs they can still find them.

I love any time that I get to spend with Collin's class. It puts things into perspective. All of the aids, teacher , and of course mommy took a child and raced out onto the playground. Most of these sweet kids are just happy that they can pick it up. It was so sweet to see them smile and react to the different things that they found.

Now, you might be wondering what was better. The Easter Egg hunt with friends at the park or with classmates on the playground. To that I respond.... you can't compare. How in the world could you compare!!! They are both so beautiful in such different ways. A child racing across the beautiful green grass and finding their first Easter egg and rushing to put it in their basket. A sweet little guy with drool coming down his face as he finally manages to get his hand around the egg to grasp it. A child's huge smile as they rip open their egg to find jelly beans and then hurry and shove them all in their mouth before their mommy sees them. A special little guy that finds so much joy in just being able to hear a sound like a LOUD beeping egg. Children sitting down together to count out their eggs and compare their victories! A class that gathers together at circle time after the hunt is done to take turns touching, smelling, listening, and looking at all of the fun treasures they found.

There is no comparison. They are both heart warming, breath taking, and treasured moments. I LOVE that I have two wonderful ways to look at the world! I LOVE how different and how very similar these two worlds are!!!

Easter Advent day 4!

Yesterday Regan woke up and found her Advent Egg. The note read go on a picnic with Mommy and go on an Easter egg hunt with friends at the park. Regan and I showed up thirty minutes early to the park. Regan scouted out the entire park to find the "perfect" picnic spot. Once she located this ideal spot we laid out our blanket and ate our yummy subway. It is always lovely to have Regan all to myself. She always has such cute and witty things to say. We talked about Jesus as we sat there and gobbled up our sandwiches. I want her to remember that Easter is truly about Jesus. Even if I can only catch her attention for a minute I just want to remind her. When her friends started to show up at the park she could hardly contain her excitement! When it came time for the hunt a couple of us moms went and hid the eggs. Ok, we threw them on the grass... does that count as hiding? wink. It was a very fun time! For those of you that are wondering why Collin didn't participate. Well, he was at school. Don't feel sorry for him though. I went and did an egg hunt with him and his classmates today and will post about that soon.

Easter Fun!

This year for Easter I decided to do something different. At Christmas time there are advent calenders. Well, for Easter we had advent Easter eggs. I started on Monday night for FHE. I made it easy to begin. Regan had to find the egg with the number one in the basket of eggs. She opened the egg with a couple sweets and a note that read tonight you are going to read a book about Jesus and Easter.

The second day Regan had to search for her egg. When she found it it read... yesterday in the Easter book we learned that Jesus went and visited and healed the sick. Today we are going to visit someone who is sick, make her cards, and bring her flowers. We went and saw a sweet sister in our ward. She has been sick and in a nursing home for a very long time. She has absolutely no family at all. She has a very tragic history with her children and husbands. Great Grandma Jo is very good friends with her so we asked her to come with us. Regan, Great Grandma Jo, and I went and surprised her and it was so sweet! (Collin could not go on this outing... to many germs.) It was a very special afternoon.

On day three Regan needed a little help finding her egg. Maybe I got a little carried away with my hiding skills. wink! In the egg the note read ... Color Easter Eggs!!!!! Regan was very excited about this one. She has been asking all week to color eggs. After we finished coloring eggs we were not done with eggs. We needed some sweet treats to end our fun night. This has been a fun way to celebrate Easter all week long. Stay tuned to see what we do next!!!!

Mommy Monday

For Mommy Monday today we went to the Aquarium of the Pacific. We have passes and love going there. Regan got a post card in the mail the other day to receive a birthday surprise from them in her birthday month. We were even more excited because we had special guests go with us to the aquarium.... Nana and Andrea!!!! Andrea's sweet and wonderful Mommy had to go back to work due to family circumstances. She has a wonderful new job and we are all so excited and proud of her. Andrea is home with her Daddy during the day while Mommy is at work. Nana "stole" Andrea from her Daddy and we had a blast!!!! I am just trying to figure out a way that I can get my hands on her more often!!!! It was a VERY fun morning! I LOVE Mommy Mondays!

By doing small acts of kindness we can do great things!

Yesterday we had our Derby Days 5K run/walk to raise money for Ability First. This is our fifth year raising money for a worthy cause. The first three we did the LA Marathon for the Jr. Blind of America. Last year we did the LA Marathon for Ability First. We LOVE Ability First!!!!!!! This is an amazing place for special adults and kids like my sweet little Collin. Their motto is ....

Looking beyond disabilities

Focusing on capabilities

Expanding possibilities

We started our day off by meeting up with

friends and sharing some love!!!!

Regan did some jumping to get ready!


Then she did a little stretch/ posing! wink!

Then it was time to GOOOO!!!!!!

Collin was having a hard time from the start. So, he ended up on Daddy's shoulders. We took it nice and slow at his sweet little pace. Daddy carried Collin on his shoulders the entire 5K. What a wonderful Daddy!!!!!!!!!!!!!!!!!!!!!! Regan took it easy and climbed into Collin's wheel chair and had PaPa push her most of the way. It is always wonderful to see all of the other Ability First families, friends, and employees working together for a common cause. It is inspiring to see a Down Syndrome man comfort his sweet girl friend with Down Syndrome as well telling her " You can do it sweetie!" To see Collin's buddies ,the employees of Ability First, come on their day off to raise funds and awareness for such an amazing facility!!!! It is heart warming as you watch a sweet little boy with obvious physical disabilities chasing after his Mommy and trying his hardest. Every year I walk away inspired, grateful, and so proud! I might not have riches to give but I know that By doing small acts of kindess we can do great things!!!!! Thank you all for your love and support! Until Next year!!!!