Sunday, March 29, 2009

Is it realy slip N slide time already????

I just thought I would share some pictures from yesterday for all of my family in the Cold rain and snow in Texas and Oklahoma. You are more than welcome to come and play with us any time!!!!!
We went to the store and walked away with a new slip N slide and swim suite. I can't believe that before long this will be our EVERY day activity. Regan was so excited to get one with a board.

Regan played in the front yard because it had some shade. So, Bubba was able to sit in his wagon and watch his Big/ little sister go!

Friday, March 27, 2009

Happy Birthday to me!

I had such a fun Birthday this year! What can I say getting a little older does have some perks. Regan kept telling me that I was the Queen and I felt spoiled all day long. The only thing that I asked for and didn't get was a good nights sleep. Maybe Collin will realize one day what a valuable gift that would be to give to me. wink! I was woken up by my three favorite people with hugs, kisses, and gifts.... can't beat that!!!! Regan always finds the best you remember the pink plunger she got her PaPa for Christmas???? Well, she was very excited when she found the perfect rainbow duster for my B-day!!!! (She is just so darn cute!!!!) Jason spoiled me with the mp3 that I have been wanting. My broke a while ago. I have been stealing his when I work out... yes, I have been driving him crazy. I was a little picky...... I want one with a radio... one that plays videos and pictures for Collin... ect.... He found one with it all and it was RED!!!!

Thank you to everyone that called, sent cards, brought by yummy baked goods, watched my kids so that I could spend the day with my hubby, and for all of the fun gifts!!!!!!

Oh, how I love my Target!!!!! (I got lots of these!!!! Oh, Thank you!!!!)

My magical under eye cream!!!! I swear by this stuff!!! I don't ever get sleep and have constant dark circles and puffy eyes. This is the only thing I have found that works! Thank you!!!!

Yummy candles!!!! Oh, how I love a good candle!!!!!
After we dropped the kids off at school Jason and I headed off to Disney Land to get my gift card and celebrate on some big kid rides.....

OK.... so they weren't all big kid rides! wink!

No such thing as calories on your birthday right???????????????

I ended my day with a wonderful dinner with my favorite people that started my day off right!

Wednesday, March 25, 2009

Let's Celebrate!

Collin is on a role! He has been feeling good and we have been loving it! So, Monday we decided that Bubba could come with us on our Mommy Monday at Disney Land. It was even more fun because we had these fun cousins meet up with us there!!!

When we got to Disney Land I took Collin into City Hall to get a new assistance pass. The woman was VERY sweet to us. When she saw the type of pass Collin had her entire attitude changed. It went from a tired Disney employee to a sweet heart. Collin's assistance pass is for Make A Wish kids and those fighting life threatening or terminal illnesses. Yes, in other words he has a "golden ticket" as they refer to it. Anyways, this sweet Disney employee asked if we were celebrating anything special today. I looked at Collin with his huge smile and replied "we are celebrating a good day!" The woman went on to ask some questions about Collin's illness and the rough time he has been having. When I told her that Disney was the best medicine we had been able to find she got teary eyed. It was a wonderful day! I guess at the end of the day it is true... all you really need is faith, trust, and a little pixies dust!


Sunday, March 22, 2009

I LOVE good days!!!!

I love, LOVE, love good days!!!!! When Collin woke up with a HUGE smile on his face I had a feeling that it would be a good day. We didn't do anything big or extra special it was just a good day. Why you ask? Well, Collin had a smile all day. We didn't have to give him pain meds once. I didn't have to clean up vomit or worry about seizures. Collin couldn't stop "talking" in church today and enjoyed being there. (I am was able to stay the entire time at church!) When we got home we didn't go any where. We just stayed at home and played together. We laughed a ton and everyone seemed to have endless smiles today! Collin's smile seems to make us all smile!!!! We had Nana and PaPa over for dinner and the kids both loved every second of their hugs and loves. At bath time Collin didn't want to get out. He was loving it and drenching me with all of his huge splashes. When it came time to settle down, after medications were given, he still had a huge smile on his face. He gave loves to Daddy and insisted on coming over to Regan and I when I was reading her bed time story. He had good night loves for both of us! Tonight Collin fell asleep with out any tears. TODAY WAS A GOOD DAY!

Friday, March 20, 2009

Lets fly a kite!

Regan has been so excited all week long because it was kite day at school on Thursday. Daddy took her to the store and they picked out the perfect Barbie kite. Regan begged and begged to put it together the second that they got home. We told her that she had to wait until the night before kite day so that it would not get ruined. Wednesday night came and she was SOOO excited! I feel bad that all they had to do was attach one little part to make the kite whole. It seems like with all of that build up there should have been more fun to be had. Collin and I watched from the side and cheered them on. When Collin came home from school it was obvious that he was not feeling well. So, he did a lot of cuddling with Mommy.

Later Collin started having seizures and they continued for some time. I had to give him Valium to help stop them. Even though it is the same dose, measured out by the pharmacists, in the injection every time some times his reactions to the meds vary. Most times Collin will just relax enough and fall asleep. That is the point of the medication. With some form of seizures they put you on medication to wake you up so that you can control it or "snap" out of it. In other cases it is better that the body just relaxes. Well, this night Collin did not fall asleep .... he became very "happy"! He was on a little high from the medication and was loving it. Regan found it hilarious that Collin was acting so silly.... watching his hands as he moved them, kissing the chair, yelling out. I have to admit it was pretty funny. This is not the first time that Collin has reacted this way BUT this time it was fun to see Regan's reaction. The next day she even wrote a little book about her funny Bubba. It was a LONG hard night but Collin woke up the next day doing much better.

Thursday came and the much anticipated Kite Day was here! It is all that Regan could talk about from the moment that she woke up. She even invited Great Grandma Jo to come with us to this wonderful event. She was too cute!!! We were one of the first families to get there and Regan loved having most of the playground to herself. She did have to share with the special classes. Regan loved running around and trying to get it up. When Jason would get it high she would say how boring it was and she just needed to run. The down side to running however is the all to common falling. Yes, at the very end Regan fell hard. She was very embarrassed and our kite day was short lived. It ended up being a good thing that it was short because Bubba was not doing well and we needed to get him home.

After kissing her scrapes and wiping away her tears I asked Regan what would make her feel better. Her response was "making cupcakes". So, that is just what we did. We made LOTS of cupcakes that Regan proudly named the Ooh La La cupcakes! We have tons left over.... please come and get some!

Sweet little boy + Life threatening Illness + specialist doctor = common since ...... right???

Oh, Mr. President maybe, just maybe if you spent less time making off handed comments about the special Olympics and more time working on a VERY flawed health care system I would not have these problems!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Yes, I have been passed off to eight different people just trying to get him into see a specialist that is supposed to be approved!!!!!!!! All I have to say is FLAWED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sunday, March 15, 2009

Dear God, please give me the strength to endure my blessings.

Do you ever have those moments when you say "Oh, I shouldn't have said that out loud!" On Friday we were happy because Collin was doing really good! So, I made the mistake... I said it out loud. We decided to pick Bubba up from school and head right to Disney Land to have some fun and celebrate! It was so sweet the second we headed down the exit to enter into the Disney entrance Collin threw his hands up in the air and started just yelling with the biggest smile on his face. We got on the tram, still big smile. Then we went on the Buzz ride, still big smile. We got off and started walking to our next fav. Then it happened... a woman walked by and she just looked at Collin with this face... I am used to pity, sadness, even a rare disgust BUT this look was very different. So, I quickly looked at Collin and saw vomit in his lap. Yes... I said vomit. Collin had started having seizures. As soon as Regan saw what was happening she started crying. "Mommy I don't want to leave! Mommy I don't want Bubba to be sick again!" I took him to the bathroom, cleaned him up, and his Daddy carried him all the way to the car. Then we got to the car and Regan starts crying yet again because I want her to sit in the back so that I can have her seat to sit in with Collin. We found a Lolly pop and put her in Collin's car seat.... that seemed to work. Collin passed out in my arms and I had to make sure that he continued to breath... ect. So, if you are thinking I was a bad mom by holding him and not putting him in his car seat .. well, I AM NOT!! wink! Regan made a couple of sweet and funny comments.
"Mommy if the Police see you they will take you and Bubba and put you in Jail! Mommy they don't have baby jar food in Jail!!!!"
"Daddy Keep your eyes out for those stinkin' cops we can't let them catch us!"
"Daddy drive safe Bubba doesn't have a car seat!!!!!!!!"
"Mommy did you say a prayer?"
Daddy did manage to save the day for Regan. After they dropped Collin and I off at home and made sure we were OK they headed out. He took her to go and get the new Pinocchio movie that she has been begging us for. He also took her to get dinner just the two of them. She is such an amazing sister. I can't imagine how hard this must be for her at times..... Just another day.
At the end of the day all I could think was.....
Dear God, please give me the strength to endure my blessings.
Some time I have to remind myslef that despite how hard days like these are.... they are a blessing. We have lost many TTD kids. Each and every single day is a blessing.

Saturday, March 14, 2009

Our weekend with Paw....

I keep meaning to update but things have still been a bit crazy around here and my Internet went down...grrrrr. So, I am back and want to share some of the fun things that we did with Paw last weekend. Collin had been stuck inside for almost two weeks by this point and was ready to get out. We found some fun things to do with Paw.

First we started by having a hula hoop contest in the backyard. HMMMM... I am not sure what has happened but I just can't do it like I used to! Collin and Paw found the only shady spot in the backyard.

Then we worked on walking. Collin has never been able to walk on his own. At his very best he could take around 20-25 steps between two people. Now we are lucky if we can get around 5. Collin was not back up to full strength at this point. So, he did not walk to well BUT he loves trying and showing off. He was having a blast showing off for Paw!!!

Then it was off to the duck park to feed the ducks.

Thank you for coming to play with us Paw! You sure helped make Collin feel better! We are so lucky to have you in our lives!!!!