Tuesday, April 27, 2010

Regan's birthday fun! {Take 1}

We love to celebrate over here!!!!! It is always more than one day. Regan's birthday fun started on Sunday with the family. She has always shared her special day with her PaPa at the family birthday party. These two are buddies and there birthdays are just days apart.

Then it was time for presents.... hey that's mine... no mine.... no mine!!!!
 Nana made Regan this special dress for her. Can you tell what her birthday party theme is going to be???
Then on Monday {her birthday} we had cupcakes with her school friends at the park. Her teacher doesn't allow cupcakes to be brought in. So, we decided to celebrate with her friends that she goes to the park with every day.

Then Regan came home to find that the "birthday fairy" had made a quick stop to drop off something for her!
Regan picked where we went for dinner. She wanted to go "some where were they will sing to me!!!!" She ended up deciding on Red Robin. Collin was so good the entire time and we all had so much fun!

Once we were done with dinner Daddy dropped Bubba and I off to start with his nightly meds and they headed out on an important birthday mission. She had one wish... a BIG one. It took LOTS of sweet talking from Daddy and Regan to talk me into it. Regan got her hamster. She was beyond excited!!!! She named him Elvis. :)

Today while putting together her gift from Nana and Papa I couldn't help but think that they must not like me much... wink! Boy, have you tried to put the mouse trap game together... it is a pain!!!!

Sunday, April 25, 2010

Happy Birthday to my baby girl!!

I can't even believe that my sweet little girl is six years old!!! Where did the time go???? She is one AMAZING little girl and I am so greatful to be her mommy!!!!! Happy Birthday sweet girl!! I love you to the moon and back... and small world and back... and China and back {if you can't tell this is a frequent game}.
It is hard to believe that this little girl is now six!!!!
She has always had awesome fashion.

She has always been able to make the best out of a hard situation.

She knows how to make you laugh.
She is such a lady even when she sleeps.

She has super powers!

She is a great big sister.

She always dances in the rain.
She is one special Six year old girl!!

Thursday, April 22, 2010


When you have brought up kids, there are memories you store directly in your tear ducts. ~Robert Brault

Today I had one of those moments with Collin. We woke up, took Regan to school, and then headed to the hospital for Collin's CT scan.  After checking Collin in we headed up to the second floor for his scan. The tech called us back and started talking to us about what would happen. She informed us that Bubba would have to stay still for a minute and a half. WHAT!?!?! When I made the appointment the girl said that they could strap him down on a board and that it would be OK if he cried or even moved a little bit. Well, I guess that is only true with CT scans of the brain not of the sinus. She then told me that he can not move or cry at all or else we will have to reschedule to do it with sedation. I started to panic... then I looked over at Jason and his was not happy. He told me that he just wanted to leave and not even try it. He was afraid that it would be a waste of time and money. I asked him to please trust me and let me give it a try. I picked Collin up and played a game with him and the machine. Then it came time to strap him down, remove his glasses, tape his sweet little head down, and start the scan. Jason had to leave the room because they would only allow one parent in the room. I prayed... oh, did I pray over and over. I kissed his sweet little head and told him that he could do it!!! I was right there with him talking to him {ok, yelling at him remember he is profoundly deaf and he had towels wrapped around his head. wink!} I also had his "friend" his DVD player right there. I am not sure if he could see it but... it was there. I had to hold his chin up to try to keep him still.

I stood there watching my little man and he was so brave. He had no way of understanding what was going on but he didn't cry. He stayed still the entire minute and a half. I think he had some of his angle friends comforting him. When the tech came in to tell me that we were done she saw the tears coming down my face and came to comfort me. I was not sad... I was PROUD. This was HUGE for him. After we got him off the table I kissed his sweet head over and over. I was so happy!!! When we walked out and saw Jason sitting there waiting I started doing my happy dance and jumping up and down. Jason could not believe it. It was a wonderful morning. What a blessing this simple little minute and half was in our lives. :)

There was nothing left to do but go and celebrate with a good dose of his favorite pain medication.... Disneyland.

We started off at build a bear so that Regan could get her free birthday friend!
She named her "Hoppy"

Collin was so excited to go on the "real" train for the first time.
I know... crazy a ride at Disney that he hasn't been on!

Thank you all for your sweet words but most of all for your prayers. The power of prayer is amazing!!!

Wednesday, April 21, 2010


I want you all to know that I never tell you about what is going on in our family and with Bubba because I want you to feel sorry for me. I received an e-mail from someone that feels that those are my intentions with my posts. It is just the opposite. It is hard for me to be as honest as I am sometimes BUT there is a reason that I am. I have received several very sweet e-mails from mothers who felt alone in their feelings and situations with their disabled or sick child. It brought them comfort to know that they were not alone. It brought me comfort to know that my words were of some value to someone. That my situation is relatable. That Bubba is not only my Hero but an inspiration to many.

With that said….

I am feeling a bit overwhelmed. Maybe it is all the catching up that I am having to do after our trip. Maybe it is because when I think of how crazy and hard this year is going to be I just get scared. Maybe it is because I never truly now how strong I am until I am tested…. and I am feeling weak.

Yesterday my wonderful mother-in-law, Bubba, and I drove in the rain to an appointment with a new surgeon. Luckily she drove, I was tired, and nervous. Our appointment was not the with doctor that had been recommended to me, it was another doctor in the same practice. I was worried I wouldn’t like him and it would just prolong this entire process.

He came into the room, sat down, and then asked “So, what do you want?” Oh, NO!! I thought… I don’t like this guy…. What does he mean what do I want… didn’t he read his chart. Then I started talking to him and realized that his office had not explained our reason for the visit. He asked me to explain Trichothiodystrphy and tell him about our sweet Bubba. He told me that just by looking at Collin he could tell that he was malnourished. He didn’t even need to see that my almost ten year old boy weighed only 31.6 pounds and was 43 inches long. It hit to my heart….”I can tell that he is malnourished from here..” It made me feel like a bad mom….I know I am not a bad mom BUT I couldn’t help but feel as I had done something wrong or let my little boy down in some way. But it was for this reason that we came to him, the expert, for help. He agreed that Collin needed a feeding tube and then began explaining in great detail what would happen, what the risks were, and what the recovery would be like.

Wow, I am scared…. Not about the surgery… I will be scared on the day of… the night before… Ok, the week before. No, right now I am worried about how in the world I am going to be able to take care of him. Let me explain what I mean. After the first surgery Collin will have a long tube sticking out of his stomach for three months. He can not pull on it or rip it out. If he manages to pull it out, which I wouldn’t put past him, he will need emergency surgery. After three months then he will go back in for his second surgery where they will place his “button” in. Think of it like a plug in a water bed or air mattress. Once this one is in and healed he can pull it out and it will not be a problem.

Collin will be in the hospital for a bit after the surgery. He has additional risks because of his skin. When I showed the doctor a picture of Collin at birth he responded “ WOW, I have only seen kids like this when I have gone to help in third world countries and they died.” That is just another testament to Collin’s strength!!! He is a fighter!!!!

By the end of the visit the doctor had completely won my mother-in-law and I over. He was very sweet and VERY detailed in his explanation. When we were leaving he looked at me with a big smile, put his hand on my shoulder, and said “it will be ok Mama.” I needed to hear that.

On the drive home we talked about all of the different clothing that we will have to alter and sew to keep Collin away from the tube. We will also have to wrap it up with an ace bandage. We talked about how hard it is going to be. I will most likely have to go with Collin to school every day to keep an eye on him. He will most likely not be able to go to summer camp this year. I will have to find a private nurse that will come into our home to relieve me every once and a while.

It is scary, new, and overwhelming.

Tomorrow I will be taking Bubba in for a CT scan to get the doctors ready for the other surgery that he needs. He will also have an upper GI done and then the two teams of surgeons will set a date. It will be a long day most likely 3-5 hours between the two.

I am scared.

I am not alone.

I am thankful for these wonderful surgeons.

I am grateful for family support.

I am once again in awe of my Little Man and his strength despite constant pain and trails.

I am lucky to have a little girl that gives her Bubba kisses as I explain what is about to happen.

I know that I have a loving Heavenly Father.

I am grateful for the gospel in my life…. It is beautiful and easy…. Life is hard, not the gospel.

I am grateful to be married to my best friend. :)

I need your prayers for Bubba.

I will keep you updated.

I will end this tonight with a picture of Bubba, so that you can see how far he has come!

Monday, April 19, 2010

Oklahoma.... OK

I had so much fun over the weekend!!!!! The best part was being able to spend time with family and to meet these two little angles!!! Oh, I just fell in love at first sight.

It was so wonderful to watch my sister with her children. She is an AMAZING Mommy, she is a natural. I can't imagine having two children with in a six month period. They both LOVE their mommy so much!!! {so do I}

Kai and Regan hit it off right away. He would just follow her around and they become best buddies. He was in LOVE with his Regie. :)

Regan was also VERY excited about baby Kylee. It was so sweet to see her with the baby.

Kai got sick while we were there :( So, between him not feeling well and the rain we spent all weekend inside.

Aunt Ju Ju let Kai finger paint for the first time..... He LOVED it!!!

His painting style reminds me of another little boy I know BUT don't worry..
I cleaned him up!

We played....
We read......

We rocked....
We cuddled.....
We spent time with old friends....
and time with family.
My sister Nancy
My Mom
My sister Michelle
and my Dad.