Playing catch up

1. First off I need to introduce you all to my new little neice. Sweet little Kylee was born on March 2nd. Her mommy did such a good job and I am so proud of her. This is my sister, Nancy, that just adopted their little boy from China over Thanksgiving. Their sweet little family is growing so fast. I can not wait to get my hands on both of them when I fly out there next month. :) Yes, her Aunt JuJu made her that big old bow!! Do you think I would ever let a little girl in our family not have a little Diva style! wink!

2.I am so excited that the Target around the corner opened up ther "mini" grocery store this week!!! This is going to make my life so much easier!!! They have produce, meat, and so much more. Now when I say "Oh, no I forget (fill in the blank) for dinner!" I can just put Collin in the stroller and go for a walk with the kids!

3.We spent Thursday with some good friends to celebrate this little guy's birthday.

Thanks for letting us join in on the fun!!!! It was hard to tell who was having more fun.... the Dads or the kids!

3. The new JoAnnes store opened and I was very excited!!! I went twice in one day loaded with TONS of coupons!!

4. The president of Miraflex saw my post about Collin's new glasses and called me all the way from South Africa to tell me how touched he is by Bubba and his story. (He also like the pictures!)

5. I have been making LOTS of new hairbows! I have been making a new style just to keep it original I have been seeing a lot of the styles that I have been making and feel the need for change! wink!

6.I have been taking LOTS of pictures! (and more to come)

I am behind....

I have so much to write about but I think I should spend my time tonight working on my RS lesson. So, I thought that I would just post a little sneak peek of some fun pictures. I have the most beautiful friends and I LOVE it when I get invited into their home for fun times like this.

Just when I thought he couldn't get any more handsome...

Yesterday we got Collin's new glasses. They are Mira Flex and are supposed to be unbreakable. Well, Collin will test that out for them. They are made out of one solid piece of plastic... this means no screws or hinges. I am excited and hoping that this will be the pair that will last for a while. The frames weren't even that expensive either. It is always the lenses that cost the most. So, after insurance paid their portion we only had to pay (insert sarcastic tone) $260. I will happily pay what ever we have to for this little man. Jason and I joke that he is the most expensive thing we “own”. It seems like every other day we are getting a new medical bill for something. We will happily live with out so that we can pay his bills if it means we get to live with him. To top it off… just when I thought he couldn’t get any more handsome. He is one good looking little man!

Mental health day

Yesterday I pulled the kids out a little early from school so we could play. Jason's family was in town visiting and we wanted to spend some time with his Aunt, cousins, and their families before they left. Nana went with me and we had fun playing just the four of us before we met up with everyone. The plan was to meet for dinner. Collin started acting tired and out of it as soon as we got there. :( This means that I had to leave before dinner even started so I didn't get any good pictures of everyone. Oh, our sweet Bubba.... you just can't change his routine one bit. It is so hard on him. It was fun playing with the kids and Nana... we needed a mental health day.

Make over Monday

Guess who got a much needed hair cut.... my sweet little girl. So, she will be my make over Monday. I did work on something fun with my mother-in-law but I will show you tomorrow! Good night!

{Special}

I had the pleasure to go and take pictures for a wonderful friend family member on Saturday.Grandma Pat is the one that told me that Collin was disabled when he was a baby. How would she know you ask.... Well, she has three amazing children, two of them are disabled. She took me under her wing when Collin was just a baby and has always been such a huge support to me. So, when I was invited to come and take pictures of Jimmy doing one of his favorite things,bowling, I jumped at the chance. He is on the Special Olympics bowling team and is very talented. I didn't get the pictures I wanted.... I needed an external flash BUT was afraid of having to much flash becuase of seizures. (Jim's seizures are triggered so easy.) At the end of the day I captured some fun ones BUT will have to go back with a flash.

We could not leave with out letting the kids bowl a little. They had a blast! It was a GOOD day!!

"Mommy, I need you"

What is it about motherhood that make’s you feel so wonderful one second and like a complete failure the next?

I wish I new the answer to that. At the end of the day all we can do is our best, right?

Lately, I have been doing my very best just to keep my head above water.

Collin was very sick for pretty much the entire month of February and then some. With this he needed so much if not all of my attention. There were seizures and vomiting….. and a little girl that needed to be fed. If I put him down then he could choke… what to do? Luckily I have an amazing mother-in-law that lives with in minutes and came to my rescue often. More often than not I felt torn. It breaks my heart to think that I might be a complete rock star with one child while I am keeping him breathing and giving him one medication after the next …BUT ….then did I fail with my daughter that only wanted Mac and cheese for dinner and I had to call for help?

I was starting to finally feel like I was treading water well and then I heard these words from a sweet little voice…

“Mommy I need you… I need some time with you.”

You know what…. I needed some time with her too.

So, with my first chance {Jason’s first day off in seven days} I pulled her out of school a little early and it was just Mommy/ Regan time. Her teacher asked what we were going to do and I explained to him that we needed time together. He looked at me and smiled and said “I agree….since Tuesday {the day of Collin’s test} the sparkle in her eye has been gone.“ I don’t ever want her sparkle to disappear…EVER.

We started our day together by going to the Aquarium to watch a Barbie movie that she wanted to go to this weekend but was not able to because of Bubba. Guess what … It wasn’t showing any more. That ended up being a VERY good thing I think. Instead of watching a movie we went exploring.

First we started with the wonderful fish and things at the Aquarium. We were able to take our time and didn’t have to rush because someone was getting fussy.

Then we continued our exploring by walking to some bridges not to far  away. We ran up and down them. We looked at the algie in the water and watched men praticing throwing balls for the Dog dock jumping competion this weekend.We laughed...a lot!

Then we walked over to shoreline village where explored by trying funnel cake for the first time.

We met new friends. :)

We played games.

We hugged.... and held hands

And best of all we found that Sparkle!!!!

Motherhood brings out the very best in me. I LOVE being a Mommy to two amazing children. When all is said and done I hope it is the days like this that Regan remembers not the hard ones. Here's to more wonderful sparkle filled, happy, and memorable days like this!

There is beauty all around.....

When there's love at home.

Today I was nervous.

Today I was tired.

Bubba was VERY tired {hard night last night} and he was in pain.

Regan was acting out a little.

This has been hard on her.

When we were all about to melt down I decided it was time for a nature walk.

"Let's look for signs of Spring." I told Regan.

She was so excited with each new beautiful find.

Things that I would over look all of a sudden were amazing.

There was beauty all around.

We were happy.

The end.

breath... just breath

Several times today I had to remind myself…. Just breath.

This morning we woke up early. I wish it were for something fun like Disneyland but it wasn’t. It was for another trip to the hospital. I woke Regan up and laid in her bed with her for a bit. She asked me some questions about the day and then we hugged. After I had gotten her all dressed and ready we all piled in Mommy and Daddy’s bed where Bubba was just waking up. Regan insisted on saying our family prayer. Her prayer was for her Bubba. It was sweet and mature. I couldn’t have said it better myself. Nana came and got Regan and took her to breakfast since it was so early and she still had a good hour before school started. Then Jason and I loaded up our hungry and tired little boy into our van and headed to the hospital.

After nine and a half years of so many surgeries, tests, and procedures you would think that maybe, just maybe a person might get used to their baby going limp in their arms and then handing them off to an anesthesiologist that they just met minutes before. No, it doesn’t get easier… to be honest it has gotten harder. As Collin has gotten bigger so have the risks each time he is put to sleep.

This morning the hospital was busy. While waiting I talked to the aunt of a little boy, 11 years old, fighting brain cancer who was having tests done in the room next to Collin. In the small waiting room was a boy, 8 years old, with autism getting ready for his tests. He didn’t want to go in. It became a fight. So, I excused my self and went into the big waiting room with Jason. There I was next to a little guy, 2 years old, who was fighting his own battle with cancer.

It breaks my heart.

I tried so hard not to cry and was doing so good but then the nurse came out and I thought it was for me. No, she was coming to get that little guy and start prepping him. When she saw me stand she came over and told me that they had some trouble getting his breathing tube down his throat and that it would take longer. I sat back down , pretended to be looking at my phone with my head in my hand, and cried. It seemed like forever waiting for them. Then a tech came out and told us that we could go back now.

Well, the tech didn’t realize that they were not ready for Mom and Dad yet. We walked back to find them trying to extabate my little man. I saw tubes, blood, my tiny baby on a huge gurney, and heard lots of choking. When the doctor saw us he quickly started saying…. “Not yet, not yet … take them back.” We walked around the corner so that we couldn’t see what was going on. I could still hear him choking and Jason kept trying to drag me away so that I wouldn’t listen but I wanted to be right there when they started to wheel him out.

He was wheeled out and we went with him to recovery. With in no time this sad, sleepy, little boy was gone and my Little man was back. We were able to go home and he spent the most of the afternoon just cuddling Mommy.

Now that all that this is said and done and that hard part is over we have yet another hard thing to do….. wait. We have to wait for the results. There is either one of two things going on, neither are good but one is better than the other. Collin was what is knows as demyelination of the brain.

A demyelinating disease is any disease of the nervous system in which the myelin sheath of neurons is damaged. This impairs the conduction of signals in the affected nerves, causing impairment in sensation, movement, cognition, or other functions depending on which nerves are involved.

So, either the demyelination has progressed and has taken over the optic nerves of Collin’s left eye or it is a tumor. Either way he will eventually loose that eye….. Either way this stinks….. Either way I am terrified as to what is next.

I have faith that what ever is around the corner for our little man he will continue to amaze us with his strength . I know that no matter what I am not alone. I have a loving Heavenly Father who is always there to comfort me and give me the strength to endure. I have a wonderful best friend who loves me, supports , and helps me. I have a sweet little girl that is her Bubba’s biggest cheerleader. I have wonderful family and friends that join us in prayer for Collin. Thank you all so much for you prayers today.

Bubba is doing good!
He is my Hero!

Make over Monday {and prayers needed}

Regan has this yellow dress from last season. It is cute but to be honest I was getting a bit tired of it. She is my dress girl and wants to wear a dress EVERY day. So, rather than go and buy her a new dress I decided to give this one a little make over, a second life if you will.

I started by taking the sad little bows off of the shoulders. Then I decided to add some Yo Yo's to it. It seems like they are on EVERthing for kids this season. They are SOOO easy to make. I didn't want to make a Yo Yo head band {I thought that would be an over kill} So, I made a basic pink bow. I decided that it needed something else so I made her a button braclet with a matching Yo Yo in the center. It took me no time at all and I think it gave this sad little yellow dress just what it needed.

Yes, I am asking for prayers again. My sweet little boy will be sedated tomorrow morning for his MRI. I am nervous, for the sedation... for the results. Please pray that my baby comes out just fine.
The power of prayer is amazing!!!
THANK YOU!!