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Thursday, August 16, 2007 11:35 AM CDT

Just a quick update to let everyone know that all is well. I am sorry that I have not updated in so long. I have tried but have had problems down loading my pictures to the account that I post them to his website. (and everyone knows that I can not do an update with out LOTS of pictures! wink) So, I promise a long and very fun filled picture update is coming. I just wanted to let you know though that Collin is doing good!!! Thank you for your love and prayers!
BIG HUGS,
Julie
(mommy)

Monday, July 2, 2007 0:00 AM CDT

First off let me start off by saying HAPPY BIRTHDAY COLLIN!!!!!! (I know his B-day isn’t until Wednesday but I know I won’t have a chance to write.) I can not believe that you are SEVEN years old!!! It seems like you were just born!! You are an amazing and strong little boy!! I look forward to the Fourth of July every year not only for the fire works but most of all it is another year to prove the doctors wrong!!! We weren’t even supposed to get one year with you and look at you now!!! We love you so much!!!! HAPPY BIRTHDAY BUBBA!!! WE LOVE YOU SO MUCH!!!!


Collin has been doing pretty good. The summer is always hard on him but we are just trying to keep him happy, safe, in doors, and cool! J We have been VERY busy!! We HATE summer because of what it does to Collin but we LOVE all of the family that comes to see us in the summer!! Here are some of the fun things that we have been doing to stay busy….. Enjoy….

A HUGE Thank you to Eli’s Angels for Collin’s B-day Package and the Beautiful quilt!! THAN YOU Firehouse Quilts!! Collin’s Quilt is wonderful!!!


We went to my mom’s and stayed the night. We have not stayed the night any where… well… since we went back east the NIH. Collin got sick. Regan and Collin did enjoy their time with their Poppie.





Collin and some of his buddies when to the aquarium one day to see the fish!!


My sister and her husband came from Texas to visit!! We had LOTS Of fun with them!!





It was my sister’s B-day so we were able to go out and have some adult time!! A dinner with no children I almost didn’t know what to do with myself! Happy Birthday Aunt Nancy!



Friday after Jason got off work we went back to Disney Land at Night (of course) to have a little more fun with Aunt Nancy and Uncle Ray before they went Home!! We were able to watch the Light Parade! One of Collin’s favorite things!!! It was a fun night! He even had a man come over to him and give him and light up toy because he was so touched by him. (He was a Chaplin that works with Make a Wish)





Thank you all for your prayers, notes, thoughts, and all that you do to lift our little family up. Thank you all for your prayers for me. The doctors put me on some seizure medication that is working wonders!! (yeah! To answered prayers!) We love you all!! Have a wonderful and Safe 4th!

BIG HUGS,
Julie
(mommy)

Saturday, June 16, 2007 11:48 PM CDT

I have to let you that summer time is always a hard time for me to update because Collin is home. Thursday was Collin’s last day of school. Collin has grown so much this past year. I think the biggest area that he has grown is in his friendships. He made many genuine friendships with his “regular” class mate friends. When I went to pick Collin up his teacher told me that one little boy put his phone number in Collin’s back pack because he knows how much Collin’s loves Disney Land and he has a pass as well. So, He was hoping that the two of them could go to Disney Land together over the summer! Agghhh!! (How sweet is that!!) This is something that I never thought would ever happen and I just brings me to tears to think about!!! (BIG SMILE)

As some of you know I have been having some medical problems. The doctors had me go in for an MRI of my brain and some other tests. Luckily most of them are coming back pretty normal. The only bad thing is that it puts us back to square one. They have put me on a new seizure medication and we will see if it helps with the symptoms. (I am only telling you all about this because I got a phone call today from someone who was upset because I hadn’t had a chance to call.) Things have been very crazy around here. The state is also trying to cut off all of Collin’s services and respite. These are things that we depend on. So, I have been doing a TON of fighting and camping out in offices. (Prayers would be GREAT!!)

Anyways, on to better news… hmmm… Collin is doing pretty good. The heat and sun is getting to him. I am having to be careful but for the most part he is doing good. He has been throwing up a good bit but it has not been full blown seizures. Yesterday we had a fun first! In the past Collin has been scared to get in the kiddy pool. Well, that was not the case yesterday. He was very excited just watching the pool get filled up!! So, we will have fun in the shade (with his UV wet suite of course) this summer!! Here are some pictures to enjoy!!!





Oh yes, Collin and Jason went on their first father son camp out together the other weekend!!! It was at the beach so Jason was not sure about it. He went late and Collin had a blast. All he wanted to do was go and play in the sand. When Collin went to sleep Jason stayed up and played cards with the other dads and was able to have fun with other guys!! Then when Collin woke up he was out of sorts and up set so they left by 8:00am to beat the sun anyways. It was so wonderful for the two of them to have a “normal” father son outing!!!



Today we walked down to the park to a carnival. It was to much for Collin so Jason brought him back him right away but Regan and her best friend had lots of fun with the little activities that they had set up to do!




I just wanted to end with this video of Collin. I think it is just to cute! You can see how VERY big he is getting and how VERY independent he is!!



To Collin and Regan’s AMAZING daddy I just wanted to say how very much we love you! Jason you are an amazing father!!! People are always amazed at the love and patience you have for Collin! I don’t know what I would do with out my best friend by my side through all of this!! HAPPY FATHERS DAY!

To my own BIG BAD DAD I just want to let you know how much I love you and how grateful I am to have in my life!! You are a wonderful father!!


We love you all very much and are so grateful for you love, support, and prayers!!!
BIG HUGS,
Julie
(mommy)

Monday, June 4, 2007 2:25 PM CDT

I am so sorry for lack of updates. I needed a break for a little bit. Sometimes life is just a little overwhelming and I needed to take a little break from anything that reminded me of how hard things can be. I have missed all of our little friends and I am excited to go and check on all of you very soon!!!
Collin had a very hard month. He was having bad seizures and other problems. We had some family come into town last month and I often found myself having to go home with Collin because it was all to much for him. Jason would stay with Regan and let her enjoy her cousins. It is always hard when we have to split up. Collin is doing better now with the change of some meds. Collin has some tests scheduled for next month. We will see how all of them turn out. I am nervous!!!
I am also having some health problems and we are trying to get them figured out. So, hopefully the doctors will have it pin pointed soon.
Collin’s last day of 1st grade is next week!! I can not believe how quickly the school year flew by this year! I am going to have a 2nd grader soon!!!! It is just amazing to see him grow and change!! Even better it is amazing to see him prove all of the doctors wrong!!! Collin will be seven next month and they said that he wouldn’t make it to 1!!!! He is my hero!! Regan is doing great as well!! She is really becoming a wonderful big sister. I often find her saying the sweetest things to him. She of course also likes to act like she is mommy and threaten Collin with time outs. She is growing up way to fast!!!

I will end with some pictures of the kids from the past month… I hope that you enjoy them!! I am back and will do better at keeping up! Thank you for your love and support!
BIG HUGS,
Julie
(mommy)

Collin and Regan having fun together!

They sure love each other!




Collin even likes seeing the princesses just to make lil’ big sister Regan happy!

Regan has been wanting to see Ariel and we Finally got our chance she was very excited!!

Saturday, April 28, 2007 5:34 PM CDT

Ok, sorry for the lack of updates. We have been very busy! Good Busy!!

First off HAPPY BIRTHDAY REGAN!!! You are such an amazing BIG little sister. You are such a good sister and friend to your big Bubba !! Mommy and daddy are so lucky to have you also!! You are such a ray of sunshine in our family!!! We love you!!

Regan had a princess party at our home on her birthday!!



Then we all got a great Birthday treat!! Paw came all the way from Texas to wish Regan a happy birthday!!


The kids were very happy!!!
Paw and I took Regan to Goofy’s Kitchen for breakfast. (Collin went to school because it was over an hour wait) Regan LOVED it!!




MMM… Yummy breakfast!!

Then today we went to the Santa Ana Zoo with Paw!! Lots more fun!!

Best buddies!








WE LOVE GOOD DAYS!!!! Collin had a hard spat on Easter but he is doing much better!!!! Thank you all for your love and prayers! Keep them coming!! They are working!!!!
BIG HUGS,
Julie
(mommy)

Friday April 6, 2007

Thursday April 20, 2007
Collin is doing much better. I am sorry I haven't updated any sooner. We have all been sick. Collin got a bad fever which of course looked like an infection some where. The doctor looked at him and didn't believe me but I talked him into giving him antibiotics for it. Only 3 doses latter the fever was gone and the seizures and everything was under control. The fever was a trigger for his seizures. Anyways he is doing much better!! tonight was open house at his school. All four of us went and the was so excited to have daddy there. The was pulling him around his class room to show him things. Then he pulled him down to the classroom that he goes into the with the "regular" 1st grade class. He was very PROUD to show his daddy his school. He drug him all around. He had the biggest smile on his face and just kept yelling the entire time!!! It was so much fun to see!!! Jason was suprised at how many kids kept coming up to Collin and saying hi! They are truly his friends and love him!!! It was a good night after a very VERY bad dr.'s apt today. I will get into that latter. I hope you all have a great weekend!! We love you tons!!! Thank you for your prayers!!!
BIG HUGS,
Julie
(mommy)



PRAYER REQUEST: Collin is having a hard time right now. Yesterday we went to church for Easter and it did not go how I had pictured it. Collin started having seizures and we had to take him out. It scared a lot of people including me. It was pretty bad. We couldn't get them under control. I had to end up giving him valume to relax him. He is doing a little better today but still is in need of prayers. All of this was triggered by a simple cold. Please pray for this Cold to pass and for my baby to get better. We are trying everything we can to keep him out of the hospital. Thank you for your prayers.
Julie
(mommy)


First off, I need to ask you all for prayers. We lost a sweet little friend of ours on Sunday who also was fighting TTD. Megan was a very sweet and very strong little girl. Please keep her family in your prayers. This illness is so awful and hopefully some day they will find something to help these amazing children like Collin who are living with and fighting Trichothiodystrophy.

Secondly, we have some BIG Thank yous to say!!!

Thank you Mrs. Carol from prayer bears!!! You are such a sweet heart!!! We love you!!!

Thank you to Mrs. Pam and all of our Pre-school pals!!!

We love you so much!!!
I also want to thank Eli’s Angels!!!! You are all so amazing. We are so grateful for each amazing book, card and prayer that say for our sweet little boy!!!! We love you!!!

Thank you to my mom and her husband. They got Jason a very cool kite when they were down here. We had a chance to take it out last weekend at Collin’s school!! It was a very fun day!!! Thank you for giving us something to share together as a family!!! We love you!!


Regan loves her daddy!!

Collin watching from the shade with his Nana!! He loved it!

Regan and Nana walking home!

Oh, but that is not all of the fun we had with our gift. The kids thought that the tube that the kite came in was just as fun as the kite!!



Thank you Pa Pa for Regan’s hula outfit from Hawaii!!


Collin had his Easter egg hunt at school today with his friends from another “regular” 1st grade class.
They love Collin SOOO much!! I am so grateful for all of them!!!


Regan checking out all of her eggs!!!
After the egg hunt Regan and I brought all of the kids some cookies to enjoy. Regan just made herself right at home!!



Thank you all for coming to check on Collin. We have been having good and bad days. We have had a lot of clouds out here lately which is GREAT!!! There are supposed to be clouds all weekend!! This will make our Easter weekend GREAT!!!! I took Collin to his Neurologist last weekend. We are having to take Collin in for an MRI soon to see how the white matter has progressed. I hate this time. I know it doesn’t change Collin but last time it was pretty bad. It just makes it real how fast this illness is progressing. I talked to her about some of the issues that we are having with Regan. She recommended that we get hooked up with a local Epilepsy support group. I am hoping that I will meet some wonderful people that can help me not only with Collin but with some of the issues we are having with Regan. For the most part Regan is a very understand and sweet little girl. Every once and a while she will act out and get frustrated with everything. She even pretends to have seizures to get attention. So, I am hoping that I will meet another parent that has gone through this.
I hope that you all have a wonderful Easter. I am so grateful for my Savior Jesus Christ and for his ultimate sacrifice and for his resurrection. We love you all!!!

BIG HUGS,
Julie
(mommy)




Thursday March, 29 2007
I am so sorry for the lack of updates. Life has been crazy!! My dad called me and reminded me that he and my brother got me a new computer so that they could keep up with Collin!! So, needless to say I am not doing a good job with my journal entries. So, much to write about and so little time! Wink! Collin is doing good. Better than he has done in the past winters!! Monday Jason and the kids helped me celebrate my Birthday!! We had a blast just the four of us! I had to take my car back in for the fourth time and then we ended up getting a new van on Wednesday!! Yeah! It is nice to have a car I don’t have to worry about breaking down on the side of the road. My mom came this week to see us. We went and had lunch with her at Disney Land. Collin was having a hard time so we had to cut it short. Today we went to Disney Land with Regan’s Best Friend and her mommy. Uncle Bryan now works at Disney Land and got them in so that we could play with them before her baby sister is born! Here are some pictures to enjoy!


Fun with Poppie!!!




Fun at Disney Land!!! (It was Abbie’s first time!!)



What can I say…. He is a little prince!!!



Collin’s face says it all!!!

We love you all and hope that you are doing good!!! Please keep the prayers coming! They are working and we are enjoying life and the good days right now!!!!
BIG HUGS,
Julie
(mommy)

Wednesday, March 7, 2007 10:46 PM CST

First off.... HAPPY BIRTHDDAY SAMMY-JOE!!! WE LOVE YOU SO MUCH!!! YOU ARE AN AMAZING BOY! YOU ARE A MIRCALE!!



Yeah!!! I have my computer back. Well, actually my computer crashed and my wonderful brother and dad got me a new computer tower as an early b-day present!!! So, I am back on-line!!!! A HUGE THANK YOU to my big BUBBA and my big bad dad!! I have so much to update about but I don’t even know where to begin. Things are always crazy around here!! Not only was I having computer problems but car and TV problems as well. All I have to say is that I have an AMAZING family that is always there to help even when we don’t ask for it. You all know who you are THANK YOU!! Collin got a pretty nasty cold and had to stay home for a while BUT he is doing GREAT now!! I guess that the biggest thing to update about is the Marathon. We did the L.A. Marathon this past Sunday to raise money for the Junior Blind of America. It was a blast!! My brother came from Texas to be part of it. Jason’s parents also walked with us!! It was a great day!!! Here are the pictures to prove it!!………..




Collin caught a ride on Daddy’s shoulders!


We finished the race as a family!! Hand in hand!!!


Bubba and Uncle Bubba with their medals after the race!!


Family shot after the race!!


More family shots!


By this point the sun was starting to bother Collin and he was done!!!


Thank you again Uncle Bubba for coming out to be with us!! We love you!!!

I will catch up on all of our friends soon. We love you all and you are all in our hearts and prayers always!!!!
BIG HUGS,
Julie
(mommy)

Sunday, February 4, 2007 10:44 PM CST

Update Feb 23, 2007
OUr computer is down. I am using Jason's parents computer right now to update. I just wanted to let you know that there will not be updates for a while since it is down. Collin is sick right now and we have been keeping him home. He is in my lap and not wanting me to update. So, I will leave you all with our love and thanks for your prayers and messages!!
BIG HUGS,
Julie
(mommy)




I am sooo sorry for the lack of updates. Things have been busy around here. The kids are doing great. Collin is doing so well that it is almost scary. (knock on wood) What I mean is that in the past we would have already made one or two trips to the hosptial and we have not done that yet!!!!! Other than little problems here and there he is doing good. When I took him to the doctor he weighed in at 26 pounds!!! My 6 1/2 year old boy weighs 26 pounds!! Yeah!!! This is a big gain for Collin. I also took him to the dentist and things look good!! Yeah!! They will have to put him under to do some cleaning and seal his teeth but other than that he is doing great!! We are looking into soccer league for the spring. I am also busy with getting everything ready for the Marathon.I am late getting things in the mail seeing as how the Marathon is March 4th. Don't worry most of you will be getting donation letters!wink! I am also getting Regan into gymnastics and trying to keep her busy. I have been having to go to doctors for myself for some health problems that they are trying to figure out. Lots of tests! Oh, fun!! I have also stared selling jewelry and tryng to bring in a little extra for medical bills. So, needless to say things are crazy around here!!! Oh, goodness I know that I have forgotten so much BUT for now that is it. I will leave you all with this scripture tonight..
John 9:1-3 As he went along, he saw a man blind from birth. He asked, "Rabi, who sinned, this man or his parents that he was born blind?" "neither this man nor his parents sinned, said Jesus, "but this happened so that the work of God might be displayed in his life."
It is my prayer that we all take the time to see the work of God in our own lives and be grateful for our trails that strengthen us.
We love you all so much and are so grateful for you support and love!!!
BIG HUGS,
Julie
(mommy)

Sunday, January 7, 2007 11:55 PM CST

I am Sorry that I have not update in long time. Things have been very busy around here with the holidays and Collin being out of school. Collin has been very frustrated to be home. So, I have had to try to keep him busy and happy. We have had lots of fun with doctor appointments (ok so that wasn’t the fun part) lots of thing together. As usual the best way to describe our Christmas break is with pictures! So, enjoy!!!


Christmas Eve we got a visit from a very special person!!


We enjoyed going to church and celebrating the birth of Christ! Both the kids looked great in their Christmas outfits!



mommy and Regan in our matching P.Js Christmas morning!


One of Collin’s favorites! BUBBLES!!!


Regan outside with several of her new Christmas presents! (back pack, rains boats, and new pj’s!)


Collin has his picture taken and it was one of the best ones that we have ever gotten of him!!!


New Years Day we celebrated by going to Chuck E Cheese!!!


No she isn’t cheating at all!!


Collin loves all of the lights!



We also took Great Grandma to Downtown Disney and to the Aquarium!






We have had a great couple of weeks and everyone here is doing well! We love you all and are so grateful for your support!!

BIG HUGS,
Julie
(mommy)

Friday, December 29, 2006 11:10 AM CST

It is with a broken heart and lots of tears that I ask you to please pray for our little buddy Lance's family. Lance died peaceful in his mommy's arms yesterday. He faught a very hard fight and is such an amazing angel. Please pray for their family. Tina has been such a friend and a strength to me in my hard times. www.caringbridge.org/md/lance
Thank you

BIG HUGS,
Julie
(mommy)

Tuesday, December 19, 2006 3:45 PM CST

First off I have to say a HUGE thank you to ELI’S ANGELS. You are amazing!!! We feel so blessed to have you in our lives. The kids opened everything so quickly that I didn’t get pictures but all of the gifts that you sent were perfect. I was so grateful also for the hat. It has a big nice brim and will protect Collin from the sun!! We love you and THANK YOU again!!!! I will get a picture of Collin in the hat and post it for you!!



MERRY CHRISTMAS FROM THE PRESLEY FAMILY!!!!
At this time of year I am so grateful for all of the many blessings that are in my life. I am especially grateful for my family and the strength that they give. I am so thankful for my Savior Jesus Christ, which is the reason for this Holiday Season. I am also grateful for friends like you that come to check in on Collin and give us support and lift us up in prayer!! Thank you!!! We pray that you all have a very Merry and Blessed Holiday season this year!! We love you!

Sorry I didn’t update the Christmas pictures yet BUT here they are…



Junior Blind Christmas Party…

Stevie Singing to all of us!!!

Regan ridding a horse!

Collin having fun with the touch and feel wall in the park.

Collin at the petting zoo at the party!

The kids with Santa at the church party!






Collin had his 1st grade Holiday concert today!! He did such a great job!!








BIG HUGS,
Julie
(Mommy)

Wednesday, December 13, 2006 6:58 PM CST

Oh goodness, I don’t even know where to begin. I know that some of you have been worried and waiting for an update. I am sorry that I am just now getting to it. Collin crashed our computer and it was in the shop for two weeks!! This and a ton of other crazy stuff made it hard to update or even check in on our little buddies!! BUT we are back online and doing GREAT!!! I guess like always one of the best ways to update is with pictures so enjoy….

Collin has lost a total of four teeth now!!! What a big boy!!!


Collin held that flag at school in the flag ceremony one day!!!


Collin Can even get down the slide on his own now!!


Collin’s soccer season has come to an end and we had a blast at the party!! Collin even got a trophy!! GO BUMBLE BEEZ!!!


We had a great thanksgiving and Collin enjoyed share the day at school with his fellow 1st grade buddies!!!


At this time of year we always have lots to do. Last weekend was not exception. Sat. we woke up to meet my mom not to far away from here to give her Christmas gifts. She was at a wrestling tournament with the husband she we were excited to get to see her! Then we went to the Junior Blind of America for their Annual Christmas party. Most of you know that we do the L.A. Marathon every year to raise money for them. We love them and they are a huge part of our lives!! They had ponies, a blind Santa, games, petting zoo, and Stevie Wonder came and sang Christmas songs for us all. He also donated $50,000.00 to the Junior Blind. It was lots of fun! So, from there we left and went to our church’s Christmas part. We were all very tired by this point so we didn’t stay to long. We had to go since we knew Santa. Collin’s Pa Pa is a personal friend of his. (wink) But for some reason Pa Pa disappeared when it was time for Santa… hmmm… I wonder where he could have gone! The kids loved seeing Santa. Regan kept telling him that she wanted Cinderella. Collin just kept smiling at him with that… I know who you are smile!! Wink!

I am having a hard time with the slide show of Christmas pics. I will post it latter!




Thank you all so much for your prayers, thoughts, cards, messages, and support!! We love you all so much!!! I feel so lucky to have all of you in my life and to have caringbridge!!! It is such an amazing thing!! Please keep my in-laws in your prayers.
We love you all!!!
BIG HUGS,
Julie
(Mommy)

Saturday, December 9, 2006 0:50 AM CST

I got my computer back today!! yeah!!! It was in the shop for two weeks!!! I will update tomorrow! I have so much to fill you in on BUT it is late. All is well and we love you all!!
BIG HUGS,
Julie
(mommy)

Tuesday, November 21, 2006 11:03 PM CST

I am so sorry that I have not updated in a while. Collin has done something to our computer and we are having a hard time with it. It won't let me download pictures or pull some things up. Despite all of our computer troubles things here are GREAT!!! Collin has been feeling pretty good and going to school!! He had his soccer award ceremony the other day and we had a blast with his team and their parents!! GO BUMBLE BEEZ!! I have also been busy with yet another thing I have decided to take on. I am now selling jewelery out of my home. (Anything to pay some of these medical bills! wink) I have SOOO many pictures to share and so much to tell you about but for now I am just going to end with all is good in the Presley house!! Thank you all for your prayers, love, and support!!! This Thanksgiving I am so thankful for my beautiful family. My husband that is my rock and my best friend, my little boy that inspires me EVERY single day to be better, my sweet daughter that has a way of making me laugh and smile no matter what is going on, my family that is ALWAYS there for me, my Saviour Jesus Christ that lifts me up when I am weak, and my friends that leave the sweetest notes and messages of encouragment for us!! Thank you!!! We love you tons!!
Happy Thanksgiving!!
BIG HUGS,
Julie
(mommy)

Sunday, October 29, 2006 5:14 PM CST

Tuesday quick update!!!*****
REGAN IS A BIG GIRL!!
I know that this page is set up for Collin but I just had to brag about Regan for a minute. Regan has had a very hard time giving up the Binky (pacifier). So, yesterday I took Regan to Build A Bear and she said good by to her Binkies and gave them to her new kitty. She was so excited and did a great job. Last night she was sad for a little bit and wanted her binky BUT she went to bed with out it and slept all night!! Today she hasn’t asked for it once!! What a big girl!!!


Regan got her kitty and started to stuff it!!

Then it was time to say good bye and up the Binkies in the Kitty and sew her up!

WOW what a big girl!!

All ready to take home her new kitty!!

BIG HUGS,
Julie
(mommy)





Ok, things are going much better. Collin had a little bit of a hard time today BUT he is doing much better than he was!! Thank you again to all of you that had Collin in your prayers. I thought I would just give a picture update today. So, here it goes…..

Collin had a field trip with his class last week. The rest of the class walked over from the school because it is only about a mile away. I picked Collin up and drove him over since he couldn’t be in the sun. Regan and I of course stuck around to help and then take him back to school!!


Collin and his buddy Will… they are both chick magnets!!


Collin and his adaptive P.E. teacher Mr. Bill!


Of course Regan had to play as well!!!


Collin and his teacher Ms. Woods!! He loves her so much!


What a good sister helping out!!!

Then we took Collin for his soccer pictures of Saturday. It was sunny and we were not going to take him BUT it was picture day. Then he ended up playing for a little bit. He slept the rest of the afternoon because being out in the sun wore him out so bad!

Team picture!!


Collin and Coach George!! Go bumble beez!!!

Saturday night we went to a Halloween party at church. The kids were both excited to go!

Collin was a hot air balloon!!! He loved looking up and seeing all of the balloons above him!!
(if any of you want to know how we did it for next year just let me know!)




Regan wanted to be a pirate princess. So, I had fun making her costume!!


Fun at the party!!

Thank you for stopping by to check on my little man!!! We love you all so much!!
BIG HUGS,
Julie
(mommy)

Saturday, October 28, 2006 11:17 PM CDT

Thank you all for your prayers. Collin is doing better. We even made it out this morning to take soccer pictures!! It was very sunny and I think we pushed him to much. He slept the rest of the afternoon. Then when he woke up and was feeling better we went out at night to a church trunk of treat party... any ways thank you for all of your prayers... They were heard!!! I will post pictures soon!!!
BIG HUGS<
Julie
(mommy)

Thursday, October 26, 2006 11:11 PM CDT

~~~PRAYER REQUEST~~~~

Collin is sick. Please pray that this virus moves through his little body quickly and that we do not end up in the hospital. He does not have much to loose. Thank you for your prayers!
BIG HUGS,
Julie
(mommy)

Thursday Oct. 19th Update!!

October 18, 2006


“Hear, O Lord, and be merciful to me;
O Lord, be my help.

You turned my wailing into dancing;
You removed my sackcloth and clothed me with joy,
That my heart may sing to you and not
Be silent.
O Lord my God, I will give you
Thanks forever.

Psalm 30:10-12

I guess it is time for an actual update. I have not written a good journal in a while for several different reasons. Collin was having a very hard time for a while and one of his medications was pulled from the shelves. This made things VERY hard on Jason and I. It also got me down. I know we all have our moments as we watch our children suffer. So, I was having a hard time watching Collin in pain at night and not being able to sleep. I have to admit this time it got to Jason and I both. I just felt like screaming!! I felt like I kept praying and praying and my prayers were not being heard BUT then I realized that I needed to change my heart and the way that I was looking at it all. Instead of asking to take it all away from Collin I had to change my prayers for strength for myself to be able to stay up with him all night. It seemed like as soon as I changed my attitude Collin started to feel better. It was hard but a sweet reminder that as we go through our trails and daily challenges we are not alone!! My dad brought rain and clouds with him from Texas. It was wonderful!! It was cloudy for 4 days!!! OH, it was great we went outside and Collin didn’t even want to have his hat on!!! Collin was VERY sad when Maw and Paw left. He has not been himself since they left on Tuesday. I think he truly understood it this time. They went with me to take him to school and then say their good-byes there. I could hear him balling even when we were outside!!

I have been busy with things for PTA. I am not on the board this year (tired of drama) BUT I am still very much involved. It is an entirely new board and when I went to the meeting this month I challenged them to get the Special Education classes the things that they need in their rooms. They were actually on board with my ideas and now I head a committee to asses the needs of the Special Day classes. Then I will hold a fundraiser solely for the purpose of the Special Ed. Classes!!! YEAH!!!!! I am not sure what the target goal will be but any of you that know how much equipment is knows that it will not be small. I am also in charge of the reflections program that supports and encourages art… photography, paintings, drawings, music, dance… ect.

On top of all of this and EVERYTHING else I am trying to get things together for Team Collin for the 2007 L.A. Marathon!! I am hoping to get some corporate sponsors this years. OH, how great would it be if we could crush our numbers from the past two years and have TEAM COLLIN show up in big numbers!!!

Oh, yes one more thing. Last month we had a blood drive in honor of Collin’s little friend Katelyn. When she was alive she received many blood transfusions. Our goal was 40 pints and we came up short BUT it was a nice turn out at our church!! Thank you all that came!!! We love you Puffy Cheeks!!

Thank you for stopping by to check on our little man. He is doing pretty good and still loving every second of every day that he is not in pain!! He is doing well in school and making lots of girlfriends!! wink! Please keep Collin and all of his little friends in you prayers!!

BIG HUGS,
Julie
(mommy)
Adversity does not build character, it reveals it.” — anonymous










I am sorry that I have not updated in a while. I feel like a broken record when I say that I am so sorry that I have been so busy with everything that I have not updated. Collin has had several good days in a row!!! It has been nice and cloudy here!!! We have all been very sick but we are doing much better now!!! My dad and step mom came from Texas to spend time with us!! It was a nice surprise and the kids were very excited to see their Maw and Paw!! Here are some pictures to enjoy!!!




We went to the Pumpkin Patch!!










Jason and I also celebrated our seven year anniversary!!! I love you so much!!!



I hope that all of friends are doing well!! You are all in our hearts and prayers daily!!!
BIG HUGS,
Julie
(mommy)

Sunday, October 8, 2006 10:16 PM CDT

I am sorry for the lack of updates. Things have been very hard around here lately. I could go into all of the bad but tonight I would rather reflect on the positive....

I am so grateful for answered prayers....
for my children's laughter,
for good days and nights of sleep,
good friends and lots of support,
family that lifts us up when we are weak,
my children's smiles and love for life,
blessings that I see daily in my life,
the angles that bring a smile to Collin's face when he is in pain,
for amazing doctors that listen to me and believe me when something is wrong,
I am grateful for my Saviour and for the strength that he gives to me,
for a husband that has been beside me for seven years,
for the sparkle in Collin's eyes when he feels good,
for the caringbridge and the notes of support that get me through hard days,
for Mrs. Pam and all of those who teach of compassion and love to children,
for Regan's love for her brother and friendship that can not be described in words,
for the beauty in the world around me,

BUT most of all I am grateful to know that my family is forever!!! God loves me and helps me so much!

BIG HUGS,
JUlie
(mommy)

Sunday, September 24, 2006 5:14 PM CDT

Hi! I am sorry for the lack of updates this week…yup you guessed it.. It’s crazy around here. Lots of running around and then Collin got very sick on Thursday. In the middle of the night we were worried that we were going to have to take him in BUT he responded to some meds. And did ok. He is SOOO strong!!

I have to tell you a sweet story. They were having book fair at Collin’s school this past week. Regan found two books that she wanted BAD!! Wink So, I brought her home and had her get 5$ out of her piggy bank to pay for one book. She was VERY excited about this!! The next morning after we took Collin to class we went down to the book fair. Regan had both of the books that she was wanting in her hands. I told her that I wasn’t sure if she get both of the books. Before I knew it Regan had put back her princess book and was dragging me to the other side of the room. There she pointed to a baby Einstein board book that she saw. She asked me to get it down for her. She didn’t even look inside of it. She told me “Bubba, Bubba’s book!!!”. I told her that I wasn’t sure about it. She was brought to tears at the thought of not getting Collin this book. It was so sweet!! How could I not get the book!! She never looked at it and it was truly a thoughtful act on her part. She gave up her princess book to make sure that her Bubba got a book as well. When she gave to the book to him he was soooo excited!!! She could not have picked out a better book for him!! This touched me so much!!!

Collin has another soccer game on Saturday. He had a hard time. I am not sure if we are going to keep doing this. I am not sure if it is the sun or if he just doesn’t care for it. Jason and I don’t want to push him. I am going to call and talk to his coach this week.

Collin ready to go!


Go Bubba Go!!!


Collin’s very own cheering section!!


Collin making a goal with the help of daddy and steven!


This is Collin and his helper Steven. Steven has a mito illness. He has had seven surgeries and is a freshman. He volunteers his time to come and help with Collin and his team mates!! What a kid!!


What better to do than celebrate a good win by going to mall and riding the quarter machines!!






Someone asked me the other day how I could be so happy with all that we have to go through my response to this woman was “ Because I choose to be.” So many of us go through hard times but the amazing thing about it is that we are not alone. We can turn to God in prayer and ask him to help us through it and ask us to be happy in our lives. “ If you change the way you look at things , the things you look at change!!!!”



We love you all so much!! Thank you for stopping by to check on Collin!!!
BIG HUGS,
Julie
(mommy)

Friday, September 15, 2006 7:37 PM CDT

Sunday night update:

It is late and I am tired but I did want to make a quick update to let you know how Collin’s first soccer game went yesterday!! None of us were sure what to expect when we got there. Collin was unsure at the beginning but once daddy went out to help him he enjoyed it. Collin’s team won of course wink!! Collin even made a goal!!! I hope that he will enjoy it even more next week!!! Anyways, I just want to share some pictures and a video of my little champion!!!!



Collin and his coach!! GO BUMBLE BEES!!!







BIG HUGS,
Julie
(mommy)




Friday
I am so sorry that I have not updated in a while. Things like always have been crazy in the Presley house!! Collin has had dr. apts. , Regan has been sick, and I woke up very sick. All I have to say is that I am lucky to have such a good husband and friend. I called him when he was getting to work at 6:45 am (after an hour commute.) He turned right around and came back home to get the kids dressed and take Collin to school and Regan to Nana and Pa Pa's house. Of course he checked on me and then he went right back to work!! What a guy!! Collin has not caught what ever this is.... so please keep him in your prayers that he stays healthy.

Collin is still loving school. His teacher is back and wow she is great!!! Collin truly loves her and all of the aids. I am VERY impressed with a 2nd grade teacher that has music with her class and Collin's class every day. Every time she talks about Collin's class she refers to them as their friends. This is making such a great impact on these kids and teaching them to love and be friends with special kids like Collin. Collin also has a 5th grade friend that comes in to read to him! Other children will come in on their recess to play with him and the other children!! He is doing good with the long days!! Regan and I miss him tons but he is loving it!!!

Tomorrow Collin has his first soccer game!! Yes, you read it right. Collin is on a soccer team. It will be our first time there so we will see how it goes. It is a special handicap team in a "regular leage" They play against "normal" teams and always win!! LOL So, this should be pretty exciting. It is at 9:00am so the sun wont hurt him!!! Yeah!! I will let you know how it goes!!

Thanks for stopping by! We love you all so much!!
BIG HUGS,
Julie
(mommy)

Wednesday, September 6, 2006 4:14 PM CDT

Today was Collin’s 1st day back to school!! He is now a BIG 1st grader!! He moved up in classes and is now with Ms. Woods. He will be in her class for the next two or three years. Ms. Woods was not at school today….L She had to have work done and will hopefully be back soon. Collin was VERY excited to be back at school!! He was all smiles when we got there! He didn’t seem to mind the change much at all. He was happy to see his “girlfriend” Emily. He also hit it off with the aids right away. They walked him down to his old classroom so that he could say hi! It was very hot so I went and got their classroom some fans. I don’t want Collin to have a stroke or seizures because of it. He did well today!!!!

Regan had a hard time with it. She kept saying No, Bubba stay home!! She was very quite and clingy at the school. She wasn’t very excited about loosing her big Bubba to school again. After we dropped off Collin at school Regan and I met up with some friends to play at a local restaurant. Regan’s sadness quickly disappeared as she stared playing.

All in all today was a great day for both of the kids. Collin did great!! Regan had her moments when I could tell that she was sad but she didn’t act out! Yeah for good days!!!

Mrs. Pam we hope that your first day went just as good as Collin’s day did!! Thank you for stopping by to check on Collin. Please continue to keep him and all of his friends in your prayers!! We love you all and are so grateful for your support. I am hoping that I will get better about signing GB and journaling now that Collin is back in school!

BIG HUGS,
Julie
(mommy)

You know I wouldn’t end with out some pictures from the big day!!!…. Enjoy………

BIG 1st grader!! (No, Collin can not stand yet. He is propped up against the door.)


Regan of course had to get in on the action.


Collin and his girlfriend!


Regan saying good bye!! What a good BIG little sister!!


Fun playing!!!


Gotta love boys!!!

Wend. Update

Wend. UPDATE

Thank you all for your prayers!!! Collin did wonderful!! I could not have asked for it to have gone better. We got there nice and early at 6:30am and were on our way by 9:00am!!! Yep, nice and quick. The eye doctor and the ear doctor were both pleasantly surprised when they got in there!!! A reports all around!!! We also found out that Collin has another loose tooth. The anastiea doctor came out to tell us that when he was pulling the tube out it hit his tooth and noticed that it was very loose. So, he should be loosing tooth number two any day now!!!! All of the nurses were happy to see Collin. They all know him by name now!! He was happy to see them too. He was actually upset to leave. He wanted to go upstairs and do some more visiting!!

Collin waiting to go back…

The day went so well that we decided to take our little hero to do what he loves most!!! Yep, we went to Disney Land. It was sunny and hot so we had to be very careful!! We all had a blast and it was just what we needed to end our day with!!!





Thank you all for your prayers, your notes in the GB, and your letters it truly means so much to us!!!

This morning we woke up to a beautiful cloudy cool morning!! So, the kids and I walked down to the park!! It was wonderful to be out and both of the kids were having a blast!!! I love good days!!!



Thanks for stopping by. Be sure to sign the guest book!!

BIG HUGS,
Julie
(mommy)




Monday August 28th
Oh goodness what a weekend. Sometimes it seems as though things always come at once. I truly believe that we are here to be tried and tested in our faith as we go though life. Some people are broken and others come out triumphant and amaze all of those around them. I have seen both in my life and my heart breaks for those who’s faith has broken under trails.

Friday I went to meet with a woman that just moved into our area and goes to our church. It was my first time going to her home and Regan was very excited because she has a daughter her age. After I picked up Collin from day camp we went over to their home. Shortly after we got there Collin started acting fussy and very tired. Before I new it Collin was having a seizure right there. It took everything in me to not cry right then and there. Our visit was cut short and I had to hurry up and get home. On the way home I just cried thinking that this is why I can’t have friends. A lot of times it is just to much for people to handle. They can’t stand to see Collin hurting or they feel guilt because their child is healthy and they have to see Collin going through so much. I know that it is hard to be my friend and that it is unpredictable and scary at times to see Collin go through so much. That is why I am so grateful for the good friends that I have that stick with me no matter what.

Collin continued to be sick and could not hold down meds and just got worse. Jason finally got home and gave me a break. My arms were cramping from holding him and trying so hard to comfort him. My back was aching and I felt as if I didn’t have much left. So, it was wonderful to have Jason there to take him and carry and love on him for a while. Neither of us got much of any sleep. I think maybe….. Two or three hours. The good thing is that we were able to keep him out of the hospital and he is doing much better now. Things are still on for tomorrow. We have to be at the hospital at 6:30am.

I have to tell you though despite how hard it is to go through all of this there are some positives that do find a way to come out. Regan was so sweet when Collin was sick. She gave him her beloved blankie and then at one point she wanted him to have her very special care bear named baby. It was very sweet. She kept asking what’s wrong bubba?? She was VERY concerned and wanted to make him feel better. Also, I am grateful to have a husband that is there to help and that is my best friend through these difficult times. I feel very lucky to have him by my side. The one other person that truly with out question understands what I am going through. I am grateful that these hard times bring us closer.

This morning when I was saying my prayers I couldn’t help but break down because I feel so very blessed. I am so blessed that Collin is feeling better today and that I have him with me here. I am feel blessed to have a daughter that is growing up to be very compassionate and loving. I also feel blessed to have a husband and best friend that is there right beside me. My heart breaks for parents that have to go through this alone. I don’t know how you do it. I am grateful for my sleepless nights because it means that Collin is here with us.

I love the saying… If you change the way you look at things, the things you look at change. I think it would be so easy to feel sorry for yourself but I am grateful to take comfort in knowing that I am not alone in all of this. I have my savior here with me to help me any time I need him. All I need to do is go to him for strength.

Please continue to keep my little man in your prayers. Please pray that all goes well tomorrow and that he pulls through like a champ!! I love you all!!
BIG HUGS,
Julie
(mommy)

Wednesday, August 23, 2006 10:48 PM CDT

I am sorry for the lack of updates. Things have been crazy around here. Oh goodness where do I begin. Well, Collin is doing pretty good. On Monday we had to have a nurse come out for an evaluation. That went pretty well. He has been going to summer day camp every day and enjoying ever second of it. He has an amazing aid with him at camp and I am trying to make it so that I can have her help me out at home. Today Collin went to the science museum with camp and loved it!! He just loves to be out and going and doing things. Regan and I have been staying busy while Collin is at camp. I watched a friends little girl the other day while she set up her classroom. Regan loved having her with us all day. It was kind of crazy because it was the day that the nurse came so all three of the kids were pretty wound up. She has been helping me do back to school shopping for Collin and try to get those things done this week that Collin won’t let me do. Friday is Collin’s last day at camp and then he will be home for a week and a half before school starts back up. He will be a BIG first grader!! Oh, I can’t believe it!!! He will have a new teacher but he will be at the same school. I took Collin to see two doctors today. It looks like… yep.. Collin has to go under on Tuesday. Please keep him in your prayers. His ENT has to go in and clean up his ears and possible repair. His eye doctor is going to just check his vision while he is under so that it is easier for her. I hate it every time that Collin is put under sedation. PLEASE keep him in your prayers. Also, please keep our little friend Megan in your prayers. She also has TTD and the doctors gave her mom some very devastating news. She is now in the hospital fighting. This illness is so awful!!

I am so sorry that I have not been good about signing guest books or updating. Summer has been very crazy. We are so grateful to all of you for your prayers, support, and love!!!!
I am closing tonight with some pictures of my cowboy and cowgirl!!








BIG HUGS,
Julie
(mommy)

Tuesday August 15th

Tuesday UPDATE:
I am sorry for the lack of updates. I am feeling much better thank you for you prayers and well wishes!! Oh, it is hard when mommy doesn't feel well. I am grateful for the help that I get from Jason's mom when that does happen. Jason's other sister came in on Sunday from Reno. So, we spent the day with them at Nana and Pa Pa's house. The kids had fun. When Collin was able to go outside with them he was very excited and had a blast being out their with everyone. Today Collin went to the bowling Alley on a feild trip with his day camp. Of course he LOVED it!! I was unable to go. They really encourage the parents to not come unless they need the help. Most of the kids/adults like and are excited about the doing things on their own. While Collin was gone I took Regan and her little cousin Shane to the beach. She had a blast chasing the waves!! She is going to be a surfer!! After I picked Collin up we went to the mall to ride the pony!! We met up with Nana and Shane. It was fun!!! Collin loves to stay busy when he feels well. Today was a good day!!! I love good days, I love it when he just smiles all of the time, I love it when he isn't crying from pain, and I love it when we can play and have fun!!!

Thank you for stopping into check on my little man!! We love you all!!
BIG HUGS,
Julie
(mommy)
I will post picks when I get them down loaded!! :)



I am so sorry that I have not update in a long time. We have had good days and bad ones. I will start off with the good. Jason’s sister and her family came down from Utah. The kids were excited to see their cousins and had lots of opportunities to play and have fun. While they were here we went to Disney Land one day. We had to be very crateful with him. He did pretty well.

Regan loving on new baby Sydney.

The kids waiting to go on Dumbo.

Regan and Gavin having fun together!!
Last week we also got Collin’s B-day present from my little sister. It was very thoughtful and perfect for him. … a new uv hat!!

One day it was nice and very cloudy.. Perfect for Collin so we took all of the kids in the spa.

If you can’t tell… they had a blast!
Then one day when it was early and the uv wasn’t to bad we went to the zoo….

Everyone with Pa Pa

Going on the choo-choo train!!

After all of this fun Collin had a hard time and we just kept him home for most of the rest of the visit.
It was very nice seeing all of them. Collin started his special day camp summer camp on Monday. He seems to really like it. They are being very careful with the sun. Today they are taking him to a movie… I am not sure how that is going to go???????? Yesterday I had a meeting with Collin’s IHSS case worker to try to get Collin more care hours. While the guy was there Collin was biting me, head butting, and being very difficult. Of course I hate it when Collin does this but this time it was good timing. I needed the guy to see how hard Collin can be and straining it can be to care for him especially when isn’t feeling well. The man said that we would be getting more hours… how many hours???… well that I do not know yet. I should find out in a couple of weeks.

I am very sick. I have been sick for the past two days and today it the hardest of them all. I had to have Jason’s mom come and take Collin to camp because I just could not stray far from my bathroom. Luckily Regan is good about entertaining herself. I just have to keep telling her that mommy has an owie in her tummy. I hate feeling nauseous.

Thank you for stopping into check on Collin. I am sorry that I have not update in so long. It is almost impossible to do while Collin is home and as soon as he went to camp I got sick!LOL Isn’t that the way it always works out!! LOL Hey, I am just happy that it is me and not Collin. Please pray that he does not catch this buy because his little body could not handle it. We love you all!!

BIG HUGS,
Julie
(mommy)

Sunday, July 30, 2006 11:02 PM CDT

I am sorry that I have not update in a while. Collin has been having a hard time with the heat and I have just been trying to keep him happy, safe, and well. The other morning he woke up with a temp. and I was able to bring it down quickly. With the heat has also come his frustration and anger. This is hard to handle at times because he is getting very strong and often lashes out at Regan or myself.

This week we went to the aquarium, the mall, I even took the kids to Disney Land one morning. (by myself!!) We just went for a couple of hours when it was still very early. It was just something to do to get them out of the house. Next week Collin will start his summer day camp. I know that he will be happy to have something to do every day. He has to be on the run all of the time. He is like his daddy that way. J This week will also be a busy one. Jason’s sister and her family are coming down from Utah. I am so excited to see the new baby!!! We plan on going to Disney Land if the weather will let us. Jason’s parents have also rented a party boat one day that we will take out… it has a cover for Collin. So, hopefully Collin will feel up to all of these fun things with his cousins.

Tomorrow we are going to take Great Grandma Jo to the aquarium. She is needing to get out and spend some time with the kids. Of course the kids will be very happy about that!!!

Thank you all for stopping by to check on Collin. I am sorry that I have not signed guest books or updated in a while. Collin is very demanding and does not allow much time for me to be on the computer… he even turns it off sometimes I if I try! LOL You all mean so much to us. Thank you!!! Please keep Collin in your prayers so that he can enjoy this week and be well. Thank you!!

BIG HUGS,
Julie
(mommy)

Fun at the aquarium.


Come on bubba I want to show you something!!!


Collin’s new hairdo!!! ( It got so hot that I had to buy shorts to put on him. Don’t worry I covered him when we went outside)


Guess who got a BIG girl bed!!! She picked it out herself and is doing great with it!


Daddy had lots of helpers!!LOL

Tuesday, July 25, 2006 0:00 AM CDT

I am sorry that it has been so long between updates. It has been VERY hot around here. This is never a good thing for Collin. It has been over the 100’s which is very unlike the “normal” weather for this area. Like most beach area houses around here we do not have central ac. We have a window AC in our living room. It works great for the living room but the rest of the house is VERY hot. Collin has had the onset of heat strokes several times. I have had to hurry and put him in a cold bath to try to bring down his body temp. I am doing everything I can to make sure that he stays out of the hospital. He has had bad days and really bad nights. He just can not sleep in the heat… so Jason and I have to take turns brining him into the living room rocking him in front of the air to try to get him to relax enough to go to sleep. The heat also affects his behavior. He doesn’t understand why he feels the way that he does and he often take it out on me because I am here and I know he gets frustrated because he just wants me to take I away.

Today I took the kids to the Mall to walk around and get them out of the house. We also ran to the store in the afternoon to get school supplies. We went in to get and new back pack ect. And we walked out with a new guitar for Collin!LOL He has been wanting this guitar and it was on sale. We have all week to look for a back pack but who could pass up that big old smile on Collin’s face when he had that guitar. What can I say I am a sucker!

PLEASE keep Collin in your prayers. It is going to be very hot all week. I will try to keep him busy and do fun things. Oh, yeah…. Summer school is out and even if it were still going there isn’t any way that he could attend with the weather like this. Oh, guess who got Mohawk…… Yep…. Collin. I will post a picture soon.

Thank you for checking on my little man. You all mean so much!!!!

BIG HUGS,
Julie
(Mommy)

Sunday, July 16, 2006 5:18 PM CDT

Hi all, Thing yes… are crazy and busy!! Collin has had good days and bad days this week. It has been VERY hot here. This weather is crazy. Typically it is only hot here for 2-3 weeks out of the summer but it has been hot for over a month!! It is awful!!! We choose to live in the expensive area just for the weather but not it has got us all going crazy!!!! While Collin is able to go to school I have continued to take advantage of the time with Regan to do fun summer things. I have to admit it was a big adjustment. I am so used to hiding from the sun, looking for a shaded area , or just staying inside all together. So, going non stop to the beach and the swimming pool was so different and almost awkward at first. Even though Collin is not with us I kept looking for the shade or trying to get Regan out of the sun…. it is such a HUGE part of my life that it is hard to change my thinking sometimes.

Collin has been doing pretty well. I was worried that he was going to have a heat stroke the other day but I was able to bring down his body temp and keep him some what happy so that helped. He was been watching home movies ALL of the time. When we have gone to Disney Land we have made videos of his favorite rides so that when we are stuck inside we can watch them. He has also been watching a lot of Christmas videos. Regan keeps going around to everyone saying “Santa, HO, HO, HO!!!” Yes, she totally confuses them. They don’t understand that it is Christmas here all year round! Wink!

Collin has been tiring me out very easily lately. He is getting to be very strong and when he doesn’t feel he is very hard to take care. I have noticed that people would much rather be around Regan and it is very hard for me. Collin and I will be stuck inside and everyone else is outside playing with Regan in the play pool. When people do spend time with Collin they get very tired of him quickly if he isn’t feeling well. Oh, it is so hard as a mom!!! I don’t really say anything because I know how difficult Collin can be but in the same breath it is for that reason that I need the support and help with him. This is a very hard and sensitive subject. I don’t know… have any of you dealt with this??

On Friday Jason got off work early and was home by 5:30 which was very nice because Collin had been having a very hard day of pain and itching. It was very hot all day!!! So, we decided to wait until night time and go to Disney Land.. Well, actually California Adventure. During the summer they have a light parade that Collin just LOVES!!!! Regan insisted on wearing her Snow white dress and Mickey ears!! I brought extra clothing because I thought she would get tired of it… oh no!!! LoL We had a blast and it was just what we had wanted for his B-day… it was an escape from the pain. As soon as we got there he forgot all about the pain!!! Oh, when Collin doesn’t hurt the world is right!!!

Saturday was a very hard day for him…. Well, for everyone. When Collin does not feel well it effects everyone!! BUT today has been much better.. He does not seem to be in pain at all today!!! Yeah!!!

Thank you all for stopping into check on my little man. Please continue to keep my little man in your prayers during these hot days. We love you all and are so grateful for you love and support!! PLEASE BE SURE TO SIGN COLLIN’S GUESTBOOK!! THANKS!!

BIG HUGS,
Julie
(mommy)


Daddy and Regan over in bugs land!

All of us on the Ferris Wheel!!


Daddy and Collin went on the rockets… can you find them!


Then we walked down to the pier and the kids went fishing. (I think Collin liked touching it more than fishing!! LOL)

Both of the kids caught fish and won big!! They loved it!!

Then it was time for the light parade!!! Oh boy…

Tuesday, July 11, 2006 5:28 PM CDT

I am sorry that I have not updated in a bit. I feel like I am always saying that LoL! Boy, I don’t even know were I left off. Lets see…. The rest of the week went pretty well. It was very hot and so of course that is hard on Collin. Saturday morning Collin was having a very hard time. He wasn’t being the sweetest little boy to his mommy to say that least. When Jason got home from work he perked right up. Jason’s dad came over and helped Jason hang the UV roller shades. I am so glad that we have them up now!!! Even though it was hot we decided to go to Disney Land Saturday night. It was still a little sunny when we got there but we had Collin’s sun screen on, uv hat , uv long sleeved shirt, and pants on. So, he was covered. He was so excited to get on the tram and new right away that he was going into the park!!

Collin’s face on the way in!!! Can you tell he was excited!!
While we were there we rode all of the kids favorites… Dumbo, Small world, ponies, buzz, and we had to go on pirates since they changed it. We all had a blast!! It was so much fun spending time together!!!

Collin on Small world!! Yes, another big smile!

Regan and mommy on small world… can you tell that Regan was to busy looking around to stop and say cheese!! LOL

Sunday was a whole different story. Collin had a very bad day. He did not feel well and slept off and on all afternoon. He kept waking up angry and when we tried to comfort him he would lash out at us. OH… I hate days like that!!!! It is so hard on EVERYONE!!

Yesterday he was doing better. He went to school and did pretty well. I took Regan to her first swim class yesterday and she is fearless!!! She just wanted to jump in with out me!! Oh, she is something.

We are trying to ignore the bad days and have as many good ones as we can this summer. Here are some of our fun summer pics to enjoy!!

Collin and Regan made a HUGE mess in their room with the books and then climbed on the computer desk!


Collin and Regan at the Aqurium last week!


Enjoy a Popsicle!!


Regan having fun at the beach!!!

Thank you all for stopping into check in on my little man!! It means so much and I am so sorry that I have not been around to sign in all of our friends pages lately…. I promise I will be around soon!!! Also, thank you Maria (Sammy-Joe’s mom) for listening to me last night!! I love you!
BIG HUGS,
Julie
(mommy)

Thursday, July 6, 2006 11:25 PM CDT

Hi!! Collin had a GREAT birthday!!! The best part of the day was that Collin was feeling good!!!! Oh, when Collin feels good the world is right! We had a busy and fun day. We started off by going to a pancake breakfast that the boy scouts put on at our church to raise money. They had a bounce house in the Gym. So, Collin was able to get in it since it was inside!! Of course Collin could not do it alone so I had to crawl in and have some fun with him!!


Collin had fun running around in his walker and we had fun with our friends and family that also went to support the boy scouts.

After that we went home to let Collin rest and then it was off to Chuck E Cheese!! Nana, Pa Pa, Grandma Jo, Uncle Bryan, and Aunt C-C all met us there and we had a blast!! We had pizza, played games, and lots of smiles!!!


Then we went home again and rested yet again. After resting we were off again. We went to Nana and Pa Pa’s house for a BBQ. Collin and I had to hang out inside while everyone else enjoying the BBQ outside. (That was hard… but unfortunately that is our life) Collin had help from his BIG little sister opening his B-day presents.

When the sun started to go down we were able to go out back. We had a cupcake cake for Collin. He can not eat cake but we wanted to get one anyways. Regan came to the rescue again to help her big Bubba blow out his candles. Then he reached over and put his hand in the icing. I helped him get his hand to his mouth so that he could lick it. He like what he tasted and went back for more!!!! It was so much fun to see!!!

After all of this we of course had fireworks. Both of the kids had a blast watching all of the fireworks. It was sooooo fun to see how excited Collin was about the fireworks. We put off giving him his night meds so that he could stay awake and watch them!!!



It was truly a great day!!! The weather was way to hot to go to DisneyLand. We are hoping that we can go Saturday night…. Keep your fingers crossed. I know that Collin will be soooo excited. All he has wanted to watch is home movies of DisneyLand. Don’t worry I will take LOTS of pictures when we do end up getting to go!!!

I want to say a huge thank you to all of you that e-mailed, left messages, called, sent cards, sent packages, and gave Collin gifts!! A BIG thank you to Carol and to Mrs. Pam for your gifts to Collin. A super BIG thank you to Eli’s Angels for your b-day gift to Collin. Thank you for thinking of my baby. Thank you to all of you that helped with our DisneyLand passes!! I also want to thank our family members that helped us get UV shades for our home. We get direct sun exposure on the back of our house and it has been very hard on Collin. Of course these shades are expensive… I am so grateful for a family that is always wanting to help and supportive of our life, our little boy, and all that we go through every day!!!

I hope that you enjoy all of the pictures. I am behind on summer pictures…. I couldn’t get my usb port to work for a little bit… don’t worry I have it fixed!! Thank you again for checking in on my little man and for keeping him in your prayers. Thank you we love you all!!!

BIG HUGS,
Julie
(mommy)

Tuesday, July 4, 2006 0:10 AM CDT

Look how far you have come!!!

My sweet little man, I want you to know how very much I love you!!! I was told they didn’t think you would make it to one… well, look at you now. You amaze me EVERY day. You teach me something new EVERY day. You help me to cherish EVERY second. You love EVERY person that you meet. I love EVERY single hug and kiss that you have given me over the past six years. I love and admire EVERYthing about you!!! You are my hero!!!!!!! I know that you have had a lot of hard days lately and for that I am sorry. I wish that I could take the pain away but since I can’t I will hug and cuddle you as much as I can. You mean the world to me and I am so grateful to have you in my life. Happy 6th Birthday Little man!!!

All my love for all eternity,
Mommy


YOU AMAZE ME!!!

Thursday, June 29, 2006 2:39 PM CDT

I am sorry for the lack of updates. OH, summer is here. That is good and very bad all in in the same breath. For Collin it means hard, sunny, and hot days. For Regan it means trips to the beach and the park. I have to admit that I am struggling a little bit with this. Last year it was not an issue because Regan was not old enough to understand or want to go places. Now that Regan is old enough to understand and ask to go to the ocean or go to the park it is hard. I am just trying to balance my time.

Collin has been doing well with summer school. I really like his summer school teacher and the aids in there with him. He seems to like it a lot. On Tuesday Collin went to an after school program for the first time. It is at the place were he will be going for summer camp. They recommended that he go after school for a little bit just to get to know the place before summer camp since he will be there all morning. Boy, I had such a hard time with this. I wasn’t sure about it to begin with because Collin is often very tired when I go and get him from school. So, I wasn’t sure about two more hours of therapy and fun. I was nauseous!!! This is silly because I have been doing programs with Collin since he was 18 months. I took him and they kicked me out. LOL They knew that I was nervous and they wanted me to get out of there so that Collin could get to know his new aid as well as the children ect. I can’t even begin to describe how I felt but the biggest thing I think was guilt. I felt so guilty that I was taking him to another program and that I would not see him until 4:00. So, I pretty much would not see him much at all!!!! When I picked Collin up at 4:00. They said that he did great. He kept trying to get out and explore. He was all smiles and so excited!!! I know that he loved it and that it was another good escape for him. For now I am just taking him on Tues. and Thurs. I just don’t want to over do it. If he is having a bad day then he just wont go to school or camp.

I am not taking Collin outside at all. I feel bad for him but I just don’t want to take a chance. It has been very hot and very bright lately and that is not a good combination for him. While Collin is in school I have been taking advantage of the time with Regan. Yesterday we went to the beach and today we went to the park. She has been having a very hard time with Collin lately. I don’t know if it is because she is getting older and understands more but she has been getting frustrated with him a lot. If I am cuddling him or taking care of him when he doesn’t feel well she will try to push herself in between Collin and I. I hope that this is just a phase because it is hard!!! The other day Collin was crying and Regan ran into the kitchen got a medicine dropper and came running in saying “ bubba medicine…. Bubba medicine!!!” I hate that all of this is such a “normal” thing….. Medicine doctors and hospitals.

Ok, enough complaining….. We are getting very excited about Collin’s b-day. A HUGE thank you to Poppie for your very generous contribution to Collin’s Disney Land B-day. (Also, thank you for Regan’s dresses) I have such a wonderful family and support system!!! Thank you Mrs. Pam for the books the kids loved them. A huge thank you to Carol for all of the kids goodies. They were both excited!! Today I let Regan take $20 out of her piggy bank to buy Collin a gift just from her. She had a blast doing that. At first she pointed out things that she liked but then after I told her that no this is for Bubba she picked something wonderful for him….. A baby Einstein toy. She also picked out the wrapping paper and paid herself. The entire time she was singing Happy Birthday Bubba.

I can not believe that he will be SIX years old!!! Oh, it is just crazy!!!! I will update more after we have had our b-day fun!!! Thank you for checking in on him!!! We love you all!!

BIG HUGS,
Julie
(mommy)

Friday June 23rd

Ok, So I have to update again because Chelle called me today and told me that our Gallery was done with all of our pictures!!! When I got home I called her up talked to her while I was watching it and yes... I needed some tissues. They are all amazing. I don't know how many times I have watched it today. Each time I watch it I find something new I love about each picture. It is just amazing. I feel truly blessed to have been able to have to amazing experience. I have to tell you that Collin climbed up into my lap while I was watching it and he kept touching the computer and loving on the pictures..... it is touching EVERYONE who sees them.Chelle captured everything that I love about Collin. Every single way I want to remember this day, our little boy, and our time as a family. A picture truly does say a thousand words...... so enjoy this novel.....

You can veiw them at.....
http://www.chelsphotography.com/darkroom/view/index.php?darkroom/client/WILcollin

Note: Music is for listening purposes only and not sold with any product or services.

Collin had a good day today. I took him into the doctor this morning for his six year check up. I still can't believe that he will be six soon. Like always they are VERY worried about his weight. He has grown to 30 inches but is still only 24 pounds. If we are not able to get him to gain weight then we will have to put a feeding tube in. I truly do not want to do this unless we have to. Please pray that Collin will be able to gain weight. The doctors do not expect him to be a big child but they just want his height and weight to grow together and his weight is leveling off. He is up to a size 3T WOW!!! I know it sounds funny... my six year old and my two year old are wearing the same size clothing but I am excited because he doesn't look like a baby any more. He truly looks like a little boy.

Thank you for checking in on my little man!! Have fun with the picture show!!!

BIG HUGS,
Julie
(mommy)




Thursday June 22nd
I got some more wonderful “present’s” tonight. I opened my e-mail and there were more pictures!!! Yes, I will be doing this for a while!! LOL I can not even begin to tell you how much these two beautiful women mean to us!! They will forever be in our hearts!! So, I am excited to show you this picture of two of our new angels and life long friends.

After we were done with our shoot I made Chelle give me her camera so that we could get a picture of them with our baby!!! Don’t you think it turned out wonderful!! They are so beautiful inside and out!! I am so excited to have come in contact with Wrapped in Love and look forward to do what ever we can to help raise funds and awarness about what an amazing non-profit organization this is!!!




Collin had his first day of summer school today and it went so much better than I thought it would. Last year is was CRAZY!! So, I got someone to watch Regan so that I could go and stay all morning to make sure that my little man would be taken care of like he should be. Well, the teacher is amazing, he is getting to stay in his class with some of his friends, and Grandpa Al (the senior volunteer ) is in there as well. Needless to say it went very well. I didn’t even have to stick around. Nana had taken Regan to run around with her. I came home to an empty house! Wow, what to do with a free hour… I sewed on some things for Regan that have been sitting there!

Some of you have asked what we are doing for Collin’s B-day this year. Well, it is going to small this year because we are spending a lot of money on his present. SHHH… don’t tell him but we are getting Disney Land passes again. Collin has all of the toddler toys ever made and well he is so hard to by clothing for that I just prefer to do it myself. So we decided to tell all of our family to pitch in on getting Collin (and the mommy and daddy) Disney Land passes again. When we go with him to Disney Land he is so happy and just looks like “a normal” little boy. It is an escape for him and to be honest he really needs a good escape lately. Yes, it is to hot and sunny to go right now so we will not be buying them right away. Jason’s sister is coming down from Utah in Aug. and we are all going to go together and have some fun. We found out that we can put our passes on hold so that when we are unable to go because Collin is sick, it is to sunny, or what ever the reason we do not loose the time on our passes. We are VERY excited about this because in the past we would “loose” about five months a year due to the weather. I am so excited!!! Collin is going to be so excited!!!

We will still go to Chuck E Cheese in the morning with family to celebrate his big day but we just wont have a huge party because we can not afford to do both. To honest Collin could care less about presents, cake or any of that. All he wants is to spend time with the people that he loves so that is what we are going to do!!!

I will go for now. Thank you for checking in on my little man. We have had a couple of So/So days but nothing bad. His skin is just hurting him. I wish I could just take it away. Please keep Collin and all of his little friends in your prayers.

BIG HUGS,
Julie
(mommy)

Sunday, June 18, 2006 10:32 AM CDT

Chelle sent me these this morning… I just had to share!!!!










Evening Update:
Chelle just e-mailed me this amazing picture. Then she called to check on Collin... how great is that. When I talked to her she said that I could share this beautiful picture with all of you!!


Don't you just love it!!! It is amazing!! I can not waite to see all of the others!!!

Please visit Chelle at http://www.wrappedinlove.org





Oh wow wear do I begin?? Well, let me start off by saying

HAPPY FATHER’S DAY!!!

Jason, you are an amazing father. Collin and Regan are so lucky to have such a wonderful Daddy. I have always said that you are the best medicine that Collin could ever get!! He truly lights up as soon as you walk through the door. It is amazing to watch the relationship between the two of you!! Regan loves her daddy time with you and doesn’t stop talking about it for days! It is so sweet when she wants you to sing her a good night song. Whether is be a good night song or jumping on top of you she loves everything you to do together.

To My BIG BAD DAD I just want to say I love you very much and am so grateful to have such a supporting and caring father. I know that I can call and cry to you any time and am grateful for love and friendship that we have. Even over the miles you have a way of checking in on us all of the time! I love you!

Ok, now I want to say a HUGE thank you to all of you that have been praying for Collin. We still don’t really know what was going on with Collin. (He has a way of doing that . LOL) He had a very hard day on Friday and yes.. Lots more tears. Jason got home safe from work! I know that lots of prayers were said for my little man. He is feeling much better though and I know it is because of the love and support from all of our friends and family. THANK YOU ALL SO MUCH!

Ok, so onto our amazing day yesterday! I know I mentioned it in a journal a bit ago but yesterday we had an AMAZING experience!! We were so afraid that we were going to have to cancel but like always our little man had a way of amazing us all and we decided to go ahead and have our day with Wrapped in love. For those of you that didn’t read about it Wrapped in love is a non-profit foundation that takes pictures of children with life threatening illnesses and their families. As well as getting pictures taken they bring you a blanket for you sweet little one.

Well, that little blurb up there doesn’t even begin to describe what Chelle and Kristin did for our little family!!! They came in the evening since it would be the best time of day for Collin. Kristin made Collin a gorgeous blanket with a beachie pattern. It was a very perfect “theme” for our day. We will forever treasure it as it hugs our little boy ever night. Then Chelle showed us a beautiful book of another family that she photographed. WOW! Collin was starting to get a little frustrated so we packed up and went over to Jason’s parents house so that Collin would be happier and there was better lighting. (Our house is VERY dark all of the time. LOL) Chelle and Kristin were more than happy to go to Jason’s parents home.

I can’t even explain how comfortable they made everyone feel. They were both so smiley and genially happy to be there. Chelle wanted to get natural pictures of Collin with everyone just interacting with them. “Relationship shots” The best part of it was that Chelle knew all of Collin’s issues with light and she didn’t even use a flash. So, he didn’t even realize it was happening. She also got pictures of Jason’s parents singing and playing the guitar with him. So perfect!

Ok, so this is where the “beachie” theme comes in. I had told Chelle that I had always wanted to get family pictures taken at the beach but we have always been to afraid to take Collin to the beach. Well, this was just he push that we needed. We went at dusk so that the sun was going down and was pretty much gone. I put tons of sunscreen on him and we didn’t even put a hat on him. I can not even explain in words what is what like to see my little man see the ocean for the first time. He was so excited and just kept going towards it. He just wanted to touch it! Oh, it was amazing!! There were a couple of times that I couldn’t help but get teary eyed. At one point they wrapped the beautiful blanket that Kristin made for him around Collin and Chelle was taking pictures and I could think was “Wrapped in Love” Boy did they live up to their name. Our entire family felt wrapped in love!! THANK YOU THANK YOU THANK YOU!!! It was a PERFECT day!!! It was so wonderful how this perfect day just made those bad ones disappear. I can not wait to see the pictures. I will share them with all of you when we get them!!!
BIG HUGS,
Julie
(mommy)

Friday, June 16, 2006 9:00 AM CDT

Prayer Request~~ Collin is having a very hard time. He woke up yesterday with a little temp and kind of grumpy. I went ahead and went with him to school since it was his last day. I wanted to give his teacher and aids their gifts for taking care of Collin for the past three years. (He will be moving on next year) At first he was fine and then is just kept getting worse. By 4:00pm Collin was asleep in my arms and not doing well. He woke up for a bit which was nice I was able to give him all of his night time meds and a bath. Then he was back to sleep before daddy even got home :( They were both very sad about that seeing as how bed time cuddles is really the only time they get to spend together during the week. By 11:00pm Collin was up and screaming in pain. This continued ALL night!!! Jason and I would take turn but Jason has to go to work so I made him lay down. This made Collin even more mad that he could not have his daddy. He was very frustrated, angry, in pain, and even a little mean (for lack of a better word) It was so hard!! He go so mad at me becuase I was not daddy and he just wanted him to cuddle him. He is getting so hard and it is taking a toll on me. By the morning my arms were burning and weak from walking around with him. He is just getting so strong and fights it so bad. He just wants to hurt himself and if you will not let him do it he will hurt you. I am running on about an hours sleep. I am hoping that Collin crashes at some point in the day so that we both can get much needed sleep. PLEASE PRAY FOR MY BABY. I don't know what is going on with him. I am trying to get him into his Dr. today.... I feel like I need to even though they usually say "Uh,, I am not sure what is goin on" and send me home.

Also, Please pray for Jason. He also got little sleep and I insisted that he did not go to work today but he said that he had to. He has an hour comute and I am so worried about him driving to and from work with so little sleep.

Thank you for listening.. LOL I am tired and I am sure a good bit of this doesn't even make since but I needed to ask for prayers for all of our friends that contiue to hold Collin up in prayer. Thank YOU~~
BIG HUGS,
Julie
(mommy)
OH, by the way.. the interveiw went well and Collin got into the summer program and is getting funded for a one on one aid!!! I also called and spoke with Maria yesterday and the surgery went well. Sammy-Joe had a hard time witht he IV's and kept trying to pull them out so that pain doctors were coming to keep him sedated to keep them in. Please continue to keep him and Jacob's family in your prayers.

Saturday, June 10, 2006 11:50 PM CDT

TUESDAY UPDATE:
I just wanted to update quickly to let you all know that I am doing ok. I know that some of you have been worried. Last night I went to bed crying but it was not becuase of my babby but because of the loss that another mother was feeling. Our sweet little buddy Jacob died Sunday night. You will forever be loved and missed!! I have also been very worried about my dear friend Maria (Sammy-Joe's mom). I have tried calling her several times but something has happened to the phone in their room since we last talked. Sammy-Joe goes in for surgery on Friday so PLEASE keep him in your prayers. WE LOVE YOU!!!!

I am very nervous becuase Collin has an interview tomorrow.... please pray that all goes well. It is for a summer program. I will let you know. Thursday is Collin's last day in his class. He has been there since he was three!!! I can not believe that he will be in 1st grade next year. OH, wow has he proved all of those doctors wrong!!!! I am nervouse becuase he will be going all day!! OH my goodness!! I also can't believe that he will be 6 YEARS old in just a matter of weeks!!!! I am SOOO excited!! Each year we celebrate is a year that the doctors in the begining told us we would never have!!

I am exciteda becuase on Saturday we have a VERY wonderful thing happening for our little family. We have come in contact with some amazing people that have a charity called wrapped in love. They take beautiful pictures of children with life threatining conditions and their families so that they have these amazing memories to hold on to. I feel very blessed. I will tell you more about them and our day latter. I am so excited to meet them!!

Please pray for our friends. Please keep Collin in your prayers. He has had a couple of good days and we LOVE good days!! We love you all so much and are so grateful for your love and support!!!! I LOVE YOU ALL!

BIG HUGS,
Julie
(mommy)

I am sorry that I have not updated in a while. It has been a very hard and trying past couple of weeks. Collin has been having a very hard time. I don’t even know where to begin. I guess I didn’t update just because well… I was very down. It was very hard for me because I have my down days here and there but I hadn’t ever had a week where I felt like that. I just kept breaking down to anyone that would listen and was so worried about my baby. Collin also has two friends that are not doing well and I am worried about them as well. (Please keep Jacob and his family in your prayers as well as Sammy-Joe.) Of course I am still worried about my little man but luckily we had a great day the other day and Collin reminded me why all of the hard days are worth it… it just takes one good day to make us forget all of the bad ones. I can’t even explain it but I couldn’t stop crying Thursday afternoon… happy tears. Collin felt well and was happy. He played with Regan and she was so excited to have him playing with her. I didn’t clean… I didn’t make dinner… I didn’t do much of anything but PLAY with my children. It was amazing and we all needed it. The world is right when Collin feels well. When I get a chance I will get into more details with Collin.

We did have some fun with my little sister that was visiting from Texas. She came and went wedding dress shopping with my mom and then they came down to spend time with the kids. Collin was doing pretty well but we had to get him out to distract him from hurting himself. I asked Karen when she was here if she thought Collin looked worse.. The same…. Better. She told me that he looked worse than we she lost saw him. I know it is true. I know he is having a harder time and has a lot of set back lately but sometimes its hard to hear. I will update soon and come to see all of our friends. Please know that you are all in our hearts and prayers.

BIG HUGS,
Julie
(mommy)

Pictures from our visit with Aunt Karen….

Karen and I having fun with the camera!


I love this picture!!


SAY CHEESE!!!

Tuesday May 30th

The tooth Fairy came to visit Collin!! Collin could care less about cash and luckily the tooth Fairy knew it and made a huge hit with him! I love that toothless smile!!

(Yes, I know I went a little over board BUT how many first do you really get to enjoy???)

Collin woke up feeling good yesterday so we were able to go bowling. We asked some friends of ours .. Grama Pat, Jeri, and Jim. We were excited that Pa Pa and Great Grandma Jo met us there as well. Jason had to work so he missed out on all of the fun. Collin lasted about an hour and it was lots of fun while it lasted!

Collin and Jeri

Collin got a strike on his very first time!! He did better than most of us!

Pa Pa was a great helper!!

Grama Pat and Jeri!! Thanks for coming and having fun with us!

When Collin got home he was pretty wiped out and had a hard time the rest of the day. When I picked him up from school today they said that he had been itching all day. He had a hard afternoon and then tonight he threw up with blood in it. I have to keep and eye on it. If it isn’t one thing it’s always another!!

I also had a chance to talk to Maria (Sammy-Joe’s mom) today. She had e-mailed me and asked me to call the wonderful doctors that we saw the other week. They have also seen Sammy-Joe and they know the most about TTD. PLEASE continue to keep Sammy-Joe in your prayers he is not doing well. He will go in for surgery tomorrow. They are so important to us and we love all of them so much. I am so worried for Sammy-Joe and for Maria. I am very sad that they are not going to be able to come out this summer. We love you guys and are storming Heaven with prayers for you!!!

We love you all so much! Thank you for checking in on Collin!! Please make sure to sign Collin’s Guest book!

BIG HUGS,
Julie
(mommy)




Sunday May 28th
Let me start off by asking for LOTS of prayers for our VERY special friend Sammy-Joe. Sammy-Joe also has TTD and is in the hospital right now. They found out that he had a stroke and he is having a hard time. Please pray that the new meds. Work and that he will be better soon! WE LOVE YOU SAMMY-JOE!!!

Now, on to fun news! We want to say a HUGE Happy Birthday to Sydney Corin born today!!!! Collin and Regan have a new cousin!! We can’t wait to get up to Utah to meet her. She came three weeks early but she is doing great! We love you!!!

I’ve got BIG news!!! COLLIN LOST HIS FIRST TOOTH TONIGHT!!!

His tooth has been loose for the past couple of weeks. We are so excited that it was his black bruised tooth to come out!! We were so tired of that ugly black tooth!! LOL Wow, he is getting so old!! I can not believe that he will be six in a little over a month!!!

This week has been a hard week. I finally broke down on Monday from the hard week we had at the hospital. It was good to finally break down and let it out! Collin hasn’t been doing so great. He has been getting sick a lot lately and has been vomiting all of the time. I am not sure what is going on with him but I hate it when he gets sick like this.


Yesterday we went up and saw my mom and spent some time with her. It was very nice. The kids were both happy to see her. If Collin is feeling up to it tomorrow I am going to take the kids bowling with a friend of ours who also has two handicap children. It should be lots of fun! We need some fun.

I will update more when I have a chance. Things have been crazy with trying to play catch up this week!! We love you all tons!!! You are all in our hearts and prayers.

BIG HUGS,
Julie
(mommy)
Here are some fun pictures from the week

I love this picture because it looks like Collin is telling Regan a secret.

Sitting on the front porch waiting for daddy is one of the kids favorite things to do!

Having some fun with great grandma jo!

Sunday, May 21, 2006 11:18 PM CDT

Let me first start off by saying a HUGE thank you to My beautiful Mother-n-law for going with me and helping me out this past week. There isn’t any way that I could have got through the week with out you!! I love you tons!

We are home! We got home Friday evening. Boy what can I say…. I am tired!! It was a very long and hard week. It was physically and emotionally draining. Like I mentioned in the entry before. We had problems on Mother’s Day and didn’t get into the Children’s Inn until around 12:00-1:00am. All four of us were VERY tired!!!! The kids crashed pretty quickly. My stomach was upset so I didn’t fall asleep … oh goodness I really don’t know if I got buy maybe two hours of sleep the first night because we got there so late and had to wake up so early.

The first day we met up with Debbie (the research nurse in charge of TTD), Dr. Kraemer, and Dr. D”. It was very nice to see all of them again. They are an amazing team that truly love what they do and are amazing!!! Thank you for all that you do for Collin and all children with TTD!!!!

While we were there Collin saw a number of doctors… ophthalmologist, dermatologist, hematologist, immunologist, Sych. Testing, nerve conduction, ENT, photography, pediatrician, and lots of lab work.
It was hard on his little body but he did amazing considering. I was VERY proud of him. On Wend. Regan got very sick. She woke up vomiting, had a fever, and just wanted to sleep. It was so hard on Wend. Because Regan was so sick and didn’t want me to leave her and Collin had to have his nerve conduction test done. I had to choose. It broke my heart!!! On the bus ride over the hospital I was in tears. I hated to leave Regan behind but I had to take Collin to his test. They got her into the pediatrician right away. She had an ear infection and little bug. So, they put her on antibiotics right away. She started to perk up right away. So, we were able to fly out on Friday.

So, as for the results.. We are still waiting on a lot of them but this is what we know at this time. Collin’s iron is very low and his red blood cells are very small but he is not anemic. They have put him on several small doses of iron a day. I will take him to get retested in 3 months to find out if it is something more serious. They did a liver panel and one are was elevated but nothing to worry about at this time… watch and see. They think that Collin’s yellowish skin color is from his diet. They were able to locate Collin’s gene which is XP-D. The radiologist there looked at Collin’s MRI and feels that it is worse than the radiologist here reported. Collin will have to get another MRI done in about six months. Oh, goodness.. I am sure I am leaving tons out. Collin came back with three new meds. We are still waiting to here back on a lot of the blood work. I will let you know when it comes in.

Thank you all for keep us in your prayers as we traveled and as Collin went through all of this. He is my HERO!!! I hope that some day I can be half the person that he is today! I am grateful to my savior Jesus Christ and for the strength and comfort I received from him each time I prayed for help last week. We love you all!
BIG HUGS,
Julie
(mommy)

Tuesday, May 16, 2006 8:43 PM CDT

Wend. update.....
Please keep both of the kids in your prayers. We are going to have to stay longer than we had planned. collin is having a hard time and regan has gotten sick. Thank you all for your love and prayers.
BIG HUGS,
Julie
(mommy)
I'll updat more latter... don't have time.




I only have a minute but I wanted to say that we here at the NIH. It has been a VERY long several days. Luckily collin starting feeling well enough to travel. THANK YOU all for you prayers. Sunday we left to come to Maryland. Well, lets just say I wont forget this mothers day ever. We didn't end up getting in until 1 am because of problems. The kids did amazing it was the air lines and airports that were the problem. First thing monday morning collin went into start seeing doctors. It was a very hard day. Today was filled with doctors as well and he ended up vomiting.... just a lot for him to deal with. He is doing pretty good considering. I am very proud of him. We were able to get out for a little bit tonight and see some sights. I will post pictures when I get home. Regan is doing pretty well.... she is having a hard time with not spending time with me and having to stay with Nana. all in all both of the kids are doing wonderful! thank you all for your love and support! I Have to get back to the room and get some sleep before all of his appts. tommorrow. thank you again and please keep him in your prayers.
BIG HUGS,
Julie
(mommy)

Tuesday, May 9, 2006 11:26 AM CDT

Friday update:
I want to start off tonight back asking you all to say prayers for my little Man. He has a very hard three days. He has not slept in two nights and has been miserable in the day. He is in pain and itching. It breaks my heart because there isn’t anything that I can do. His meds are not helping one bit and he just wants to hurt himself. So, needless to say I am very tired and broken hearted. I am also worried since we are due to be leaving for the NIH on Sunday. He needs to get in a good day tomorrow or I am not sure if he will be able to travel. PLEASE say lots of prayers for my baby to start feeling better.

So, if Collin feeling bad wasn’t enough it has been a crazy week. Trying to get things together for Mothers Day, Collin’s teacher appreciation stuff, and getting everything packed and ready for our trip and get all of his medical stuff together!!! Man when it rains it pours. BUT as they say you need rain and sunshine to make rainbows….. I hope that we get a rainbow soon.

I will try to update when we get to the NIH. We will be VERY busy but if I get a chance I will try to get to a computer. Also, I will take LOTS of pictures.

I just had to share this picture…..

This is Collin holding Grandpa Al’s finger. Grandpa Al is a senior volunteer in Collin’s class and he just adores him! If you can’t tell by the picture!! Tomorrow is Grandpa Al’s birthday… we are not sure his real age… he won’t tell us!LOL We are pretty sure he is in his 80’s. He is an amazing man and I feel lucky to have him looking after my little man during the mornings.

Thank you all for stopping into check in on Collin. Please keep him in your prayers this next week. Also, a huge thank you to Eli’s Angels for Collin’s Book. I also want to say a HUGE thank you to Kyleen for all of the amazing books that you sent the kids. They were both very excited!!! We love you all!

BIG HUGS,
Julie
(mommy)






Tuesday May 9
First off I need to ask all of our teacher friends a question. This week is teacher appreciation week here. I always do something for Collin’s teacher and aids. I can not think of anything and I am running out of time. So, what have you done for a teacher or has a student done for you that has really touched your heart???


Ok, now on to the important stuff… Collin! Collin is doing much better. We have been blessed with lots of cloudy days lately which has helped a ton!! Collin is still having mood swings but that is to be expected. His eye is doing much better as well. It did not end up looking as bad as I thought it would. What happened anyway you ask… Well, Collin was hopping (crawling) on our hard wood floors and either his hands gave out of he missed his knees and he fell right on his face. His glasses cut the bridge of his nose and then he got a nasty bump on his eye lid and it started to bruise. He does have a black eye but it isn’t as big as I thought it would be… his glasses hide it well. LOL My poor little man. He had such a hard week last week. He is such a trooper though. I could not ask for a stronger little boy. Jason and I always ask ourselves how in the world we got so lucky with our two amazing children.

THANK YOU all so much for all of your prayers for Collin. They were heard and answered.!!! Celeste, your entry in Collin’s GB about praying and then it starting to rain and the song coming on just touched me so much. It is amazing how big this world is but how small it seems when we reach out to help one another. Prayer is a powerful and amazing thing that has blessed our lives so many times. Thank you all for believing and having faith in prayer to help Collin.

Well, as for this week I am trying to get ready for our trip. I am getting MRI’s Doctor reports and all of those kind of things. As well as typing up family medical history, medicine list, doctor information. You know all of that good stuff to save time while we are there. As for Mother’s Day we will be traveling ALL day. I know that we will all be very tired when we finally get to the Children’s Inn. I am so worried about not having Jason there with me. He is my strength and he is the best medicine for Collin. All Collin has to do is see Jason walk through the door and he cheers up and feels better right away. I don’t know how he does it but I am grateful that they have that bond.

Please keep our sweet little friend Lily in your prayers. She is in the hospital right now. I know that their family would appreciate it tons.

Thank you all for checking in on my little man. Thank you for the love and support that you give our family. Thank you, Thank you , Thank you, Thank you, Thank you, for just being my friends! Please be sure to sign Collin’s Guest book.

BIG HUGS,
Julie
(mommy)

I thought that I would leave you all with some fun pictures from the past week. There isn’t any better way to cheer Collin up than some good ol’ finger painting. He really gets into his work! LOL



Don’t worry he only gets to paint with face paint. LOL




Regan got into Collin’s school bag and found his sunscreen….. New conditioner?????


Nope guess it won’t work as a conditioner! LOL

Sunday, April 30, 2006 11:36 PM CDT

Thursday evening update....
Please pray for my baby. Collin has just been having a hard time. Today he had a hard day at school and then he came home and had a hard time. He fell and well.... now he has a big black eye. I will update latter but please pray that we can figure out what is going on with him. Thank you!


Thursday update:

Sorry for the lack of updates but it has been hard around here this week. Like I mentioned in the last journal (below) Collin had a hard day on Sunday well it continued to Monday and got so much worse. We had to start him on a round of steriods. I HATE STEROIDS!!! Anyways, he was itching in pain and having a very hard time. I was hoping for a better day on Tuesday but no luck! He didn't want to eat at school and he continued to itch and feel bad. Plus throw "roid rage" into the mix it isn't ever fun!!! Collin was determined to hurt himself one way or another... scratching himself, hitting his head on the wall, or rubbing his face in the carpet. When I would pick him up and hold him so that he would not hurt himself than he took it out on me. Stratching my face, hitting, and pulling on my ears and nose. This isn't typical Collin... he is normally so pateint! I HATE STERIODS!!! Regan started to act out because she was getting frustrated with how much attention Collin was getting. It has been hard on her this week. She is so patient with him when he is sich but this time she just needed some mommy cuddles and Collin wasn't going to let that happen. What is a mom to do???????? By Tuesday night I was a mess crying my eyes out. I was physicaly and mentaly worn out. It takes so much out of me when he is like this... not to mention no sleep doesn't help much. Thank You Nancy for letting me cry "on your shoulder" over the phone.

I realy needed a good day on Wednesday... so did the kids. Well, Collin was so tired from vomiting and everything else on Tuesday night that he slept all night tuesday night!!!! Then we woke up to a cloudy day on Wed.!! Collin was feeling better and it was showing. The meds. were kicking in and taking care of things!!! YEAH!!! We had such a good day together. Nothing special... just a good day at home. OH I LOVE GOOD DAYS!!! Regan went potty 3 times all by herself yesterday!!! Collin played nice and followed Regan around all day because he just wanted to play with her and watch what she was doing. He adores her!!

I got our schedule for our trip back to the NIH in a couple of weeks. Wow, we are going to be busy. While we are there Collin will see.... dermatology, neurology, audiology, immunology, ophthamology, Neuro-phsychology, nerve conduction, lab work up, and he was also have a photography session. Ok, so it is going to be a hard and quick four days. We will leave on Sunday (mothers day) and return on Thursday. (Lisa, I think Monday eveing would be good to meet up with you but I don't know if we will be able to go anywhere since we won't have a car.) I am excited to see the doctors there.. they are wonderful. I am hoping that they can give us some answers.

Thank you Deb for your donation!!! Thank you also for your gifts for the kids!! You are such a good friend. I hope that we can meet some day!!

Thank you all so much for checking in on my little man. I was trying to figure out how we could get up to Utah to see our friends that are coming into town and of course Devin and Kara but I just couldn't make it happen... bummer!!! Please keep Collin and all of his friends in your prayers. (Ben, Jacob, Taryn, Kari, Devin, Kayla, Caden, Kirk, Lance, and the rest of our friends!) We love you all so much!!!

BIG HUGS,
Julie
(mommy)




Sunday
We had a GREAT weekend!! My dad and Step-mom flew in from Texas on Friday morning and left this morning. We were very sad to see them go but were so happy to spend time with them. We had lots of fun. Collin felt pretty good while they were here. Luckily it was cloudy both days so we were able to get out. On Friday we went to the carnival at Collin’s school for about 15 minutes. The kids loved the petting zoo. On Saturday Jason and my dad put in an air conditioner. VERY much needed with Collin having heat/sun strokes. They also put up a swing in the backyard for Collin. Collin was SOOO excited to see it!! We went to the shoreline for a little bit since it was cloudy and then had dinner down there. The kids had so much fun with Paw and Maw. It was nice to see them having fun! We don’t get to see them enough. We are going to plan a trip out to Texas before long to see all of my family while Collin can still travel. Paw and Maw left this morning. Collin has had a hard day today. I am not sure if he got to much sun yesterday or what but it has been a battle all day. He just wants to hurt himself and scratch until he bleeds. It breaks Jason and mines hearts to see him like this. He is asleep now so we are praying for a good nights sleep tonight.




Thank you for stopping into check in our little man! We are so grateful for all of your support! Please be sure to sign the guest book!!

BIG HUGS,
Julie
(mommy)

Monday, April 24, 2006 11:28 PM CDT

HAPPY BIRTHDAY BABY GIRL!!!!

Dear Regan~
I Can not believe that you are already two years old! You are an amazing little girl that brings so much to our little family. Your daddy and I have loved you from the second we knew you were on your way to us. Your brother is so lucky to have a sister that loves him so much and would do anything for him. I know that it is not easy to be Collin’s sister but you do an amazing job. Yesterday when Collin was coughing and you reached over for his hand and said “OK, Bubba..OK?” It brought tears to my eyes. I know that you love him dearly and are already looking out for him. I am so grateful to have a little girl that shows me the little things that I sometimes miss with Collin because I am so worried. I love your spirit, your enthusiam for life, your love for others, and your gift to bring a smile to anyone’s face. You mean the world to me and I feel so lucky to have you as my daughter. Thank you for each and every memory that we have made over these last two years. I treasure each one and hold them dear to my heart! I can’t wait to make many more memories with you as the years pass by. (Just don’t grow up to fast, you hear!!) I will love you forever and a day!
BIG HUGS,
Mommy

Collin and Regan the day she came home from the hospital





EXTRA EXTRA READ ALL ABOUT IT….. THE PRESLEY FAMILY DUO COMING TO A TOWN NEAR YOU!!!





The kids with a new gift they got to try to keep them entertained inside last week!

Sorry it has been a while… wow almost a whole week. Well, I will start with last week. Collin was out of school with Spring Break. It was a sunny and hot week… so, that means that we spent the week inside for the most part. This had to be the hardest week when it came to the whole Sun factor. Regan was very upset that she could not go outside or go to the park like we normally do. She started to get frustrated with Collin and get angry. One time when I was putting Collin’s UV hat and shirt on before we were going to the car the looked at me and said…. “Sun bad mommy” I feel awful for both of them. Collin did not want to be stuck inside and he got bored VERY easy. Poor Regan is having to live as if she had TTD and be stuck inside even though she is the healthy one. Ok, so enough complaining. I did managed to take the kids to the mall a couple of times and just kept Collin covered. I took Regan to get her pictures done the week before last and than last week I took Collin to get his done as well as a picture of them together. If you remember my last experience with getting his picture done than you will know how awful it was. This time it was much better!!! Here’s the proof….

Friday was a cloudy day. It was much needed for all three of us. Aunt Leslie met up with us and we went to the Santa Ana Zoo. It is perfect because it is small and shaded. I forgot my camera so no pictures!! It was nice spending time with Aunt Leslie since she will be moving to Utah soon. We will miss her tons!

Sunday we had one…. Yes one… of Regan’s B-day parties. Her b-day is on Wednesday but we had our family birthday party -BBQ for her and Pa Pa. It was cloudy outside so we were able to be outside with Collin under the shades and covered from head to toe. It was LOTS of fun! It was so fun to see her get excited about everything that she got!


Today Regan and I went over to Great Grandma Jo’s house and cleaned it for her. Then we went shopping for more b-day party bags treats. WOW, I still have lots to do for her party on Wednesday. It is going to be a play date with her friends and Nana is keeping Collin so that we can go outside and play. We are also getting ready for our trip back east to see the doctors at the NIH. We will be leaving on May 14th Yes, mother's day. How perfect is that.... there isn't anything better to do on Mother's day than be a MOM. Jason's mother will be going with me to help take care of Regan. Jason could not get time off. We are excited to see our friends there but nervous of some of the things that have been said lately. They will do lots of tests on Collin While we are there. We should only be there until Thursday. I just hope that Collin holds up well. Thank you all for stopping in to check on my little man.
BIG HUGS,
Julie
(mommy)

Monday, April 17, 2006 4:28 PM CDT

Tuesday special message!!!



HAPPY BIRTHDAY MRS. PAM!! WE LOVE YOU SO MUCH AND ARE SO GRATEFUL THAT WE HAVE “MET” YOU THROUGH CB. YOU ARE SUCH A CARING GIVING AND THOUGHTFUL PERSON!! WE LOVE YOU SO MUCH! HAPPY BIRTHDAY!!!!
(The kids made you something but I haven’t gotten it in the mail yet… soon I promise!!)








"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life."
John 3:16


HI!!! We had a great Easter weekend! Friday I went and worked at Collin’s school for a little bit and then he had his annual Easter Egg hunt. One of the regular Ed. Classes hosts an Easter egg hunt and the children all get to be paired up with a “special friend” that helps them find Easter eggs and puts them in the basket for them. It was raining so it was done in the adaptive P.E. room. They all seemed to have a blast. I am so grateful to the teacher that puts this all together every year and for including our children.


Collin and his friends at school.

Regan did not go to the Easter Egg hunt because she was on a very important date. Her Nana and Grandpa bought her an Easter dress and hat. Well, they wanted to take her shopping to find some matching shoes. So, while we were having fun with Easter Eggs they were shoe shopping and having McDonalds.

Saturday is rained in the morning and was cloudy all day!! YEAH!!! So, because of this Collin was able to get out of the house and run some errands with me. When Regan woke up from her nap we colored Easter eggs and latter in the evening we had Nana , Grandpa, and Great Grandma Jo come over for an Easter egg hunt. Regan was so excited!!! Should could not wait! Collin was actually picking up the eggs and putting them in his basket. (With daddy’s help of course.) He was very excited to be out of the house and having fun!


On Sunday we went to Church and celebrated Easter. It is amazing and overwhelming to think of the love that our Savior Jesus Christ has for us. I can not even begin to imagine what God must have been going through as he watched his son suffer. He knew that it must be and he loved us so much that he sent his only begotten son to earth to walk with men, teach men, die for men, and rise again so that we might be able to return to him some day.

This is Collin’s Spring Break from School so he does not have school at all this weekend. So, I am going to have to be creative and pray for lots of clouds! LOL Today Great Grandma Jo and I took the kids to the aquarium to see the fish. They both had fun!

Collin holding Great Grandma Jo’s hand!

Regan looking at all the fish…. Yes with her Mickey Ears on!LOL

I hope that pray that you all had a wonderful weekend. Thank you for stopping into check in our little man!!
We love you all!
BIG HUGS,
Julie
(mommy)

Tuesday April 11th

Today has been a great day!!! Yeah for good days! After Regan and I took Collin to school we went to the store where Regan picked out a BIG girl potty and treats for when she goes potty. I know this will be a long process but she was so excited!!! When we got home she wanted to watch Cinderella while she sat on her potty trying to go pee-pee. It was to cute. She hasn’t actually gone in the potty yet but she sure has tried. After watching Cinderella we went to the park where Regan had a play date with some of her friends. One of which is moving to Utah this weekend. We will miss them lots!!


Then we went and picked up Big Bubba from school and came back home. Our sweet little friend Taryn and her little big sister Payton came over to play for a bit!!! We were so excited to see Taryn, Payton, Debbie (her mom), and Vicky (her nurse.) Regan and Payton had a blast playing in Regan’s room!! Collin had fun spending time with his girlfriend! LOL It was so wonderful to see Taryn’s big beautiful smile in person again!! She is such a sweetie!! Thank you for coming to see us while you were down here!!!! We love you!! I will be making our sweet little Taryn Lots of hair bows soon!!! Please stop by to say hi to Taryn. Taryn's Page

Taryn and Collin

Collin and Debbie

My little sweetie Taryn!!

Collin, Regan, Payton, and Taryn

We want to ask you all again to keep our little buddy Ben and his family in your prayers. They are going through a lot right now and he will be having surgery soon. Thank you for always stopping into check on our little man and for keep him in your prayers and hearts!!! We love you all!!
BIG HUGS,
Julie
(mommy)



Monday April 10th
I am sorry that I have not updated in a while or been around much to sign guest books. I have been a little down lately. A very close family friend died two weeks ago. It was a very big surprise. He was only in his 50’s and was in good health other than diabetes. He was working out, collapsed, and died at the gym. This came as a shock to everyone that knew and loved him. Jason’s parents are best friends with them. His dad spoke at his funeral and his mother has been there for his wife and their kids. With Dave’s sudden passing it has brought up a lot of talk about death and funerals. This was especially hard for me because of a conversation I had with Debbie at the NIH (two conversations ago). She made a comment to me that she was amazed that Collin has been with us as long as he has seeing as how many health problems he has had and that he owed it all to Jason and I. This was meant as a compliment but it was hard to hear someone who probably knows more about it than anyone else say that they were amazed that he was still with us …. It was hard to hear. Then latter in the conversation the topic of autopsy came up and she was VERY nice about it don’t get me wrong she could not have been any sweeter about it but anyways she asked me to speak to Jason and see how we feel about letting Collin have an autopsy upon his death. This would help them better understand TTD because they haven’t ever been able to look at a child before. After I got off the phone I broke down. Then with all that has been going on around us the last two weeks it has been impossible for me not to think about it. Jason and don’t even wan to talk about the subject and to be honest this is the one area that I want to live in denial about. I can’t imagine my life with out my little man. That is why I stay so busy with so many projects. If I start to get sad or think about it then I just start working on something. I have been told by more than one person that Jason and I should talk about and figure all of these things out now because it would be impossible to make decisions while we are in the moment. So, anyways I don’t want this to turn really sad but that is why I haven’t been writing as much this past couple weeks. I have just been down.

My kids sure do know how to cheer me up though! I needed a good day on Friday and we had a blast at home just playing the three of us. Then we painted and wow Collin did a great job!! Regan did a wonderful job as well. Regan would not finger paint.. She didn’t want to get her hands dirty! LOL Here is some video so you can see them hard at work!

(Just click on the picture to see the video)




Collin decided to taste it! LOL



They did a wonderful job didn’t they!!!

I am also trying to get things ready for Regan's 2nd Birthday!! I can not believe that my baby will be two on the 26th. So, I only have a couple of weeks to figure out what I am going to do. Of course it is going to be a Mickey Mouse party!! LOL

Saturday we took it pretty easy. We didn’t wan to push it since Collin was doing well. We ran to the store for a minute but other than that we were indoors pretty much all day. Then on Sunday we went to church. Collin starting hurting really bad and could not be comforted so Jason brought him home. I stayed to teach my class but I was such a mess (crying,…. Worried about Collin) That I couldn’t even teach. Someone else took my kids in with their class. Collin was pretty out of it for the rest of the day.

Today Collin had a good day at school and we had a good afternoon. We even made it out to the store with Grandma Jo. Collin did throw up once but I don’t think it was because of the sun. Anyways, we are doing good at the Presley house hold and are grateful for all of your love and support!!

OHHH before I forget I have some HUGE thank yours to say. A BIG thank you to Mrs. Pam and all of the Pre-school pen pals that donated to the Junior Blind of America on Collins behalf!!
A huge Thank you to Eli’s Angels for this custom pillow case with Collin’s name on it!!!

A huge thank you to Rosi for the kids egg cup and spoons and chocolates!



We love you all tons!
BIG HUGS,
Julie
(mommy)
We can’t wait to see you tomorrow Taryn!!!! J

Monday April 4th

PLEASE PRAY FOR OUR LITTLE BUDDY BEN. HIS CANCER HAS RETURNED. THANK YOU! Ben



I am sorry that I have not updated in a bit. After talking to the doctors at the NIH we decided to limit his recess time to 15 minutes and then he comes inside. Then he stays in for the rest of the day unless we are going to and from the car. His teacher said that he didn’t seem to mind to much to have to come in early from recess. Grandpa Al (a senior volunteer) just takes Collin for a walk up and down the hallways while the other kids are still outside. This seems to be working because this weekend was our first weekend in six weeks that Collin didn’t throw up and get sick!!! YEAH!!! I hate it that Collin can not go out much at all but I am happy that we finally had a good weekend. He sure deserved one!

I will update more latter but for now I will leave you with a GREAT video of what a sisters love can do to cheer him up!!!

BIG HUGS,
Julie
(mommy)





Tueday March 28th
I had a pretty good weekend.. I guess considering how most days go in our house. Saturday we woke up and Collin was feeling good and it had been raining and it was cloudy so we decided to take the kids to the Santa Ana Zoo. It is a very small zoo and has a little petting zoo. We called up Nana and Grandpa and they came too. Both of the kids were happy to be out and it was nice to be doing something together as a family.

Mommy and Regan ridding on an Elephant named Rosi!


Collin petting a goat!


Regan and Grandpa playing chase around the tree!


Daddy and Collin getting ready to go on a train ride around the zoo!!


Hugs for Big bubba at the end of the day!

When we got home Collin started to start getting sluggish. By the evening he was vomiting and not doing good. Jason and I were supposed to go out to dinner for my B-day. Jason’s parents showed up and I told them not to worry about it because Collin wasn’t in good shape. Nana took Collin and told us to go and east some where close and to be quick. Jason and I both got in the truck and just started to cry. I hate it that we can’t one good weekend!!!

My B-day was actually on Sunday. So, when we woke up I told Collin that all I want for my B-day was for him to feel good and have a good day. Daddy and Regan made pancakes and bacon for me for breakfast and then we ALL went to church together!!!! Collin has not been to church in over a month!!! They were all excited to see him! He was very happy to be there. After we were at church for a while guess who got sick…. Nope not Collin daddy! Jason got food poising or something and very sick very quick. We came home and Jason went straight to bed and I had a blast playing with Collin while Regan was napping. He was in such a GREAT mood.



Collin made a BIG mess with all of his books!!


Regan had to join in!


They both LOVE books!!!

In the evening we went to Nana and Grandpa’s house for my b-day dinner. Jason did come but he was upstairs laying down the entire time. Regan helped me blow out my candles and it was a nice night.

Today Collin was in the newspaper!! There was a picture of Collin walking across the finish line and the title of the article was…. 5-year-old displays heart in Marathon. I will try to copy and paste it soon. Anyways, I am writing a book here so I better go. I am sorry that I have not been around to sign GB this week. I will be around soon… I promise!!!
BIG HUGS,
Julie
(mommy)

Saturday March 25th

Hi!! I am so sorry for the lack of updates this week. It has been very busy as always. There have been problems at Collin’s school, I had to go in on Tuesday to have work done, Regan and I were able to go to a play date at the park this week!, I have had a baby shower for three weekends now and have to make stuff for them, and everything else.

I am sure you have all noticed that for the past month Collin has been getting very sick on Thursday or Friday. Then he will be better by the beginning of the week. This has really had us all scared especially since every time we take him in they have no idea what is going on with him!!! I was talking to Maria (Sammy-Joe’s mom) on the phone the other day and Sammy-Joe has the same problems. It was described to her that it is like the symptoms of a sun stroke. Sammy-Joe also has TTD and Maria has become an amazing friend!! I love you Maria!! So, I took what Maria told me and then called the National Institute of Health
( In Maryland). They are doing research on TTD and have been following Collin. So I asked them if they have any idea what is going on and if they think that it could be symptoms of sun stroke. I spoke with Dr. Kramer one of the doctors there and he was also very worried about Collin. He told me that he thinks Collin most likely is getting to much sun exposure. The only time Collin is really out in the sun is at recess (which he LOVES) at 9:00am. I thought that since it was in the morning it wouldn’t hurt him since the UV is low. Well, I was wrong. Collin is also getting progressively worse so what he might have been able tolerate a year ago he can not tolerate now. OH IT BREAKS MY HEART!!!!!!!! Now I am going to have to call for a new IEP to get him a one on one aid so that he can stay inside at recess time. L They were concerned at the NIH and have moved our fall trip back east up to May 15th. They wan to see Collin soon. (So, Lisa we will be out your way in May!)

I hate it that no one can help him … or make this go away!!!! Oh, goodness I broke down on Wednesday. Things are fine now. I am going to try to plan a trip to Texas soon. I am afraid with as sick as he has been getting we are not going to be able to fly to much longer. Airplanes are just one big ol’ germ carrying mess. It isn’t even fresh air. It is just the same old air going through out the plane again and again. I don’t know how much longer his little immune system will be able to handle that. So, we are going to try to go out some time this year. I hate the thought that it might be our last trip out there. My entire family is there!!! (except for my mother)

Anyways, things are going good now and COLLIN IS NOT SICK THIS WEEKEND!!!! We plan on taking full advantage of that and doing something fun (indoors) as a family! It is my B-day this weekend and that is all I want… Some good quality, HAPPY, and fun family time! We all need it!! Thank you for stopping in to check on my little man! I means so much. I will be coming to make the rounds soon!

BIG HUGS,
Julie
(mommy)





Sunday March 19th

Wow, what a day. If you read the last journal we were not even sure if Collin would feel up to coming to the marathon today or anything. Well, he started doing better yesterday and by today he was much better than he was on Thursday. We were able to go and participate in the L.A. Marathon 5K as a family after all!! We took it very slow this year with Collin not 100nd Regan wanted to get out every once and a while to stretch her legs. Here are some pictures from our morning…





















Like last year I was very touched watching some of the other people around us as we walked. Let me
Share…. There were many blind people who were holding on to others, holding onto guide dogs, or using their guide sticks! There was a man in a wheel chair that could move his legs some and he pushed himself the entire way. Towards the end we were by a Downs Syndrome couple. The man was encouraging his girlfriend and telling her that she could do it. It was truly amazing. What touched me the most was at the end. We got Collin’s walker for him and he was having a hard time but you could tell that he wanted to do it. EVERYONE around started cheering for him and clapping. It brought Jason and I both to tears. Collin is truly an inspiration to everyone he meets!

Thank you to all of you that have supported us and have donated to the Junior Blind of America on Collin’s behalf. It truly means so much. If you have not made a donation and would still like to don’t worry you have plenty of time! We will not present them with the money until the end of April. Once again thank you all so much for your love and support!!!

BIG HUGS,
Julie, Jason, Collin, and Regan

Saturday Update!

Oh wow, it has been a hard week. Collin got very sick again on Thursday. He was not feeling good at school. He even fell asleep on the floor at school. Then latter in the evening he just kept getting worse. He started vomitting and started running a fever. Nana and Aunt Shawna came over to feed Regan dinner. (Aunt Shawna came down from Utah for a couple of days.) When Collin gets like that I can't even put him down to feed Regan so luckily they came to help until Jason got home. Then he was up most of the night in pain and just not feeling well. I ended up having to take him in on Friday because I couldn't break his fever. Nana went back up to Utah with Shawna in the morning. So there went my babysitter right there. Then I called grandma Jo, Jason's Aunt sue, and some people from our church. No one could watch Regan for me. So,I had to take Regan with me when I took collin in and of course it was raining. So there I am pushing Collin's wheel chair and fighting with a 2 year old trying to get her to mind in the rain. Then when we got there they did every test that they could think of .. They cathed him 3 times trying to get urine. They swabbed him, looked at his throat, ears, .. you name it. Of course they came back and said we don't know what is going on with him and sent us home. We spent over two hours there. Pour Collin was so upset when they had to cath him. It was even worse because Regan was right there watching it and she got so upset by it. I was so tired and upset by the time we got home. I was spent!!!

Then I woke up this morning and had to go to the dentist to start getting some work done on my teeth... no fun!!! There are few things that I am afraid of and that is one of them!!!! I was in tears!

Then we had to pick up our numbers for the marathon tomorrow. I told Jason that I would do it alone if I had to. Jason said " No way I don't care if I have to carry him the entire way .. we are doing this as a family." Luckily Collin's fever has broke and he is starting to do better. I don't know that he will feel up to walking over the finish line but we will see tomorrow. (He always has suprises up his sleeves!)

Thank you all for your love and support. THank you to all of you that have donated and all of you that have e-mailed me about donating. Collin (and the rest of us) were in the paper on Thurs. to talk about Collin, our family, and the marathon. It was a very nice article. I am hoping that this will help us meet our goal.

BIG HUGS,
Julie
(mommy)



Monday March 13

It is that time again!! We will be in the L.A. Marathon this Sunday to raise money for the Junior Blind of America. We are very excited about this and if you would like to support our little man by making a donation to the Junior Blind of America please e-mail me at Collin Presley@aol.com. Thank you so much!



This weekend was VERY hard. Collin got a cold and it took a major blow to his little body! He had a lot of mucus and ended up throwing up for almost 24 hours because of it. It was so scary his little body would tighten up and would shake. It wasn’t a seizure… it was different than anything I had ever seen before. I stayed up with him all night. Jason came and relived me every once and a while but it was a long hard night. When I talked to them the next day and told them what was going on they said that we will most likely start seeing things that we have not ever seen before. That is scary to think. Jason and I thought for sure we were going to end up in the hospital with him BUT he fought that awful cold away and showed us again how strong he is. He is doing much better now and we are all amazed at his strength! He is my Hero!! I am excited about he marathon. We are going to have Collin’s walker waiting by the finish line so that we can take him out and let him walk across the finish line all by himself like the champion he is!! Don’t worry we will take LOTS Of pictures!! Thank you all for your love and support!
BIG HUGS,
Julie
(mommy)

Friday, March 10, 2006 0:29 AM CST

Let me start off by saying that this journal is dedicated in loving memory of my sweet Granny that died early Sunday morning. Mildred Lance was an amazing woman, mother, wife, and Granny. I was not able to be at her funeral yesterday in Arkansas but all of my family was there…. My brother, sisters, cousins, mom, aunt, uncles. It was hard not being there with all of them but there wasn’t anyway that I could go. Please keep my mother, aunt, and uncles in your prayers.

Things have been so busy. Sometimes I just feel as if I don’t have time to keep up with all that is going on but some how it just works out. I have been busy with lots. Monday the kids, Grandma Jo, and I went to the Junior Blind of America where I spoke to a large group of people about why we are doing the marathon in a couple of weeks on behalf of the Junior Blind of America. Collin threw up right after we got in the car and it was a little drive to L.A. so he was not his happy self. Regan decided that she needed to steel the show. She went on stage sang, danced, and made sure everyone was looking at her! LOL Later in the day they called me to ask if I would go on television to talk about our story and about the Junior Blind of America. I will let you know what happens with that.

Tuesday was house work. Wednesday I took Regan to the park for a play date. She was so excited to be out with her friends and just be playing. Things have been so crazy with Collin and moving that she has not had a chance to just do those little things. Collin has been having a hard time. When I pick him up from school he is doing ok but then he just starts having a hard time. I hate it when he gets like this.

Tonight I had a PTA meeting for Collin’s school. Now I am here writing this at 10:00pm while everyone is sleeping. Collin has several appointments next week so it will be busy as well. When is life not busy???

I promise that I will be around to sign guest books soon. I am so sorry that I have not had a chance. I love all of you and think of you often.

BIG HUGS,
Julie
(mommy)

Regan’s Room

Yes, I made her outfit.;)

I just love that smile!!!

Saturday, March 4, 2006 4:58 PM CST

Ok, we have our internet up and running now! Yeah!! Before I say anything else I want to say a HUGE (late) HAPPY BIRTHDAY to our buddy Sammy-Joe!!!! It was his Birthday on Thursday. Sammy-Joe also has TTD and we love him SOOOOO much. We are getting to meet Sammy-Joe and his entire family this July!!! How great is that!!! WE LOVE YOU!!!!

Now on to us... things are going good. Collin had a hard go of it witht he flu BUT he is doing good now. He gave us all a scare but like always he showed us what a champ he truly is!! He is my Hero!! Our little house is coming along. All of the boxes are unpacked, pictures hung, and it feels like home. The kids had a hard time the first couple of days but now they love having so much more space to explore and play in. (Mommy loves it also) I guess the hardest part is how very much the kids miss their Nana and Grandpa and not seeing them every day. We do got to see them often but it is an adjustment for everyone. (especially grandpa LOL!!) I have lots of pictures to share when I have time. We are on our way out to the zoo. We are going to enjoy this Saturday of good health!! Thank you all for your love and support .. even when our computer was down.. wow you are all great!!!
BIG HUGS,
Julie
(mommy)

Tuesday, February 28, 2006 1:24 PM CST

Just a quick update to let everyone know that our internet is down. So, there will not be any updates for a bit. I had to come over to Nana and grandpas to check my e-mail for the marathon... I promise letters will be coming soon!!! Ok, well as far as the move. It went pretty well. Collin ended up getting the flu on moving day which made it hard for me to do a lot. In the morning Nana, Grandma Jo, and Aunt Leslie had both of the kids. Than they brought them over to the new house and Collin started throwing up. YIKES what a way to welcome in the new house. So, Collin is sick, I am unpacking, and things are CRAZY. Not to mention all of the other things that I have on my plate!! We are supposed to go to the pain doctor on Thurs. but that will have to be rescheduled. Please keep my little man in your prayers so that we don't end up in the hospital. THANK YOU TONS!!!
BIG HUGS,
Julie
(mommy)

Friday, February 24, 2006 9:11 AM CST

Just a quick update to say a HUGE HAPPY BIRTHDAY to my little nephew Mitchell he turned 12 on the 22nd!!! I love you sooooo much you big fat hairy skunk!!! I also want to say a HUGE HAPPY BIRTHDAY to our very special CB friend Kari!! She is turing 3 today!!!

Well, this week has been VERY hard to put it lightly. Regan had the flu BAD... then I caught the it. Boy, I haven't been sick like that in a long time. I lost 4 pounds in one day. I know I want to loose weight but trust me this is not the way to do it! LOL Jason ended up getting it as well. Collin spent pretty much most of the week with Nana. We just wanted to keep him away from us so that he hopefully wouldn't catch it. THANK YOU NANA!! She even slept with him at night when he woke up in pain. WOW, what a lucky boy to habe such a good Nana.

Oh, yeah we are moving tomorrow!! YIKES! The bathroom is done and we can move in. So, yes I am crazy. Last night I was over there finishing painting and today I will start moving over small stuff. Then tomorrow is the big day. Oh, yeah nope I don't even have everything packed yet. Oh, it is going to be a VERY long weekend!!

Thanks for stopping by to check on my little man. He is doing great ... shoot better than some of us!LOL Then pain meds. still really are not doing much. We go back next week to see what to do next.

BIG HUGS,
Julie
(mommy)

Tuesday, February 21, 2006 0:22 AM CST

Sorry for the lack of updates. This has been a very hard weekend. Regan has the flu AGAIN... I am trying to keep Regan and Collin apart. Thank you Nana and Grandpa for your help with Collin.Collin has been off and on with the pain. We got his new medication today!! So, tonight was his first round of this medication. We will see if it helps or not. I am also trying to pack and get things ready for the move. Needless to say this has been a very hard and stressful weekend. I will update more when I have a chance. Thank you for stopping in to check on my little man.

BIG HUGS,
Julie
(mommy)

Thurs. Feb. 16th

Ok, let me start off by saying some HUGE thank yous... this is going to be long but I have not had a chance to do this yet. We want to thank all of our sweet friends for thinking of Collin and Regan and sending them Valentines... thank you Maw and Paw, Uncle Bubba, Mrs. Pam and all of the Pre school pals!, Alex, Kirkland, Kari, Kyleen, Devin, Kari, and Alisa!!! Thank you all for your love and support! The kids love all of the happy mail that they get!! One more big thank you to my sweet husband for my V-day gift. Yes, he got me flowers but he got me a statue that I wanted. I collect these staues and found an older one were a sister had her arms around her brother. It was just to perfect!! Thank you Jason!! I love you!

Ok, so everyone is wanting to know how the appointment went today... well it went great. We took the train to LA Childrens hospital. It was about an hour ride. Our appointment was at 9:00am and if any of you know what LA traffic is like... yikes.. So, we took the train. (Collin, Regan, Nana and Me.) After we got there I wasn't sure if it was even going to happen becuase there were some insurance issues... I was almost in tears and the woman and I figured something out. She was wonderful. My Mother in Law said her heart broke for me just watching me talk to her because she could tell what was going on BUT after that was all figured out everything went well!!! Shoot I told her "I will pay for it out of my pocket if I have to... this little boy just needs to be seen."

After all of that was sorted out we met with the doctors. Oh wow they were wonderful!! Neither of them had any idea what TTD is but they are willing to research it and work with us to help our little boy be comfortable. They agree that our little man should not EVER be in pain. Yes it is a hard fact to think quality rather than quantity but wow how wonderful will what ever time be with him if he is pain free and happy!!! They believe that the pain is not only from all of the many things that he has working against him but also the nervous system. So, they are starting him on Oxykodon (spelling??) He will take this one all of the time to try to keep the pain away. Why should he ever hurt??? They also agree that he should not be put on any meds that will make him sleepy, out of it, or just not our Collin. I understand this will most likely take time to figure out wich medication is best. After Collin has been on this meication for a while then they will most likely introduce another one for night time. We go back in two weeks to check in.

OH, it was wonderful to have doctors willing to "take a chance" and agree with me on everything that I was saying about his needs. These were wonderful men that truly understand what they are doing and I am so grateful that they were brought into our lives to help our little man!!! It was truly an answer to our prayers!!!

It has been a long day and I am tire. We did not get home until around 2:30 but it was well worth it!!!

hhhhhhhhhhhhhhhhhhhhhhggggggggggggggggggiiihhhgggggghhhhhhhhhhhhhhhhhhhhhhlslhjgd;hhhhhhhhhhhhh
(Collin wanted to say hi!!!LOL)

Thanks for stopping in!! Be sure to sign in on the Map as well as the guest book! Please pray for our buddy Joseph who is going in for surgery. Thank you!
BIG HUGS,
Julie
(mommy)




Tuesday Feb. 14th
Happy Valentines Day! Today has been pretty good. Collin slept well again last night!!! WOW I know I can’t believe it myself!! He cries out in pain and his teacher told me today that he did it twice in class. Then when he got home he did it several more times. I am so glad that we are going to the pain specialist on Thursday!! Yeah!! Here are some fun Valentine pictures for you all to enjoy!!!

Valentine that Collin made!!

Regan got a Mickey Mouse Balloon from her daddy for Valentines Day!! (She is obsessed with Mickey right now!)

Collin got a new stacker toy from mommy. He has had this exact one so many times but he looses the rings. Look how hard he is working!!!

I just had to put this picture up!! Don’t they just look to cute!!! They look so much alike in this picture!

Thanks for stopping by PLEASE sign Collin’s map and the guest book!
BIG HUGS,
Julie
(mommy)




Saturday Feb. 11th
There is only one word to describe this weekend… awesome! We had a wonderful weekend. On Thursday night Jason and I picked up my brother and his two children. Oh wow my niece and nephew have gotten SOOO big!!! The kids were sleeping so they didn’t get to see them until Friday. On Friday Collin, Regan and I met up with Uncle Bubba, Hunter, McKenzie, and Poppie. We had a GREAT day at Disney Land. It was very sunny and it worried me but we just had Collin covered from head to toe and made sure to stay in the shade as much as possible. It was a blast!!! Then on Saturday the kids got two packages in the morning. One was from Devin and Kara (Thank you Alisa!) They got a great book and stuffed animals. The other package was from Kyleen… a friend that we have made on CB. Not only did she send the kids stuffed animals and valentines but she also sent us two amazing scrap books that she made for us!!!! I could not stop crying when I was looking at them. You can look at them at http://home.comcast.net/~mrsz/collinpresley.htm. Thank you Kyleen so much!!! Latter in the day we met back up with Uncle Bubba and the kids. We ate at the Rain Forest Café and spent some more time with them before they have to go tomorrow. I can’t even begin to tell you how much my brothers trip out here has meant to me. Just the fact that he knows what a hard year Collin has had and how important making good memories with him is. We defiantly made some wonderful memories this weekend!!!!!! I am also grateful for our happy mail. This entire weekend has just been GREAT!!!! We all needed it!! I can’t think of a better way to describe our weekend than with… yep, you guessed it PICUTRES!!! So, here they come … enjoy!

BIG HUGS,
Julie
(mommy)

Regan and McKenzie… CHEESE!!

Collin and Hunter! Cuddles on Small World.

Uncle Bubba and Collin!





Fun and Rain Forest Café!

Collin LOVED it!!!

CHEESE!!!

Saying Good Bye is hard!!!

Tuesday, February 7, 2006 9:20 AM CST

I am sorry that I am just now updating. Collin ended up pulling out of it last night after another dose of meds. He slept well and woke up with a smile on his face. I can't believe it... after a night like that and then wake up with a smile on your face! ONLY COLLIN. He has had a hard day off and on. He had a good morning but then he was very tired from everything last night and crashed on me. Tonight he also had a hard time. Thank you for all of your prayers. He is doing much better!! Thank you!!!
Julie
(mommy)





IMPORTANT: PLEASE PLEASE PRAY FOR MY BABY. COLLIN IS NOT DOING WELL. HE STARTED HAVING SEIZURES AT 5:00 AND IT WOULD NOT STOP. THEN I GAVE HIM VALUME TO HELP BUT IT IS STILL GOING ON. WE WILL BE HEADED TO THE HOSPITAL IF THINGS DONT CHANGE PLEASE PRAY FOR HIM PLEASE!



Sorry for the lack of updates. I can’t believe that it has been an entire week since my last update. Yikes! Needless to say I am very busy. … with the move, getting flyers ready to send out for the marathon, organizing donations, COLLIN, and every other every day life stuff. I am excited about the move and am having a blast with Regan’s room. I am going to paint a mural on two walls. I hope that it turns out good. I will start with that next week. When the bathroom is finished we can move in! We have decided to keep Collin in our room and let Regan have her own room. Collin just wakes up so much and it makes it easier on us to have him right there and it is easier when only one kid is up to deal with.

We had a pretty good weekend. Saturday was a GREAT family day. We went to Ikea to pick up some stuff for the house and Jason got a little taste of some of the mess that I have to deal with all of the time. We parked in one of that handicap spots and were getting the kids out of the car. A woman walked by and was staring at us. Then as we were getting ready to go into the store this woman comes and parks her car behind ours and proceeds to tell us that we are taking advantage of handicap parking and that we should not have parked there. Jason had Collin in his arms so I am guessing the woman just thought that he was a toddler. (I don’t know what the lady was thinking.) Anyways, Jason was livid! He starting getting angry with the woman and I had to go over and tell him to calm down. I told the lady that if she spent a day in our shoes with our little boy than she would understand. Then she proceeded to tell me that she understood and I said “um, no you don’t there is no way you can understand unless you have a child like mine.” Jason was so angry as she was pulling away he opened the trunk of our van and said “see here’s his wheel chair does that make you feel good?” This was the first time that Jason has ever had this happen to him. Unfortunately this was not the first time for me. A lot of times if it is just Collin and I, I will carry him to make it easier depending on what we are doing. I have learned to just shrug it off but sometimes you wonder what people think give them the right to judge whether or not you are worthy of a coveted handicap parking spot!

Collin had a hard day on Sunday and Sunday night was even worse. Oh goodness, it was a bad one. Jason and I took turns for a while just trying to calm him down and not let him hurt himself. Finally I made Jason go to be so that at least he could get some sleep since he has such a long commute. By about 4:00am I just turned on his movies and let him wake up. Boy I was so tired yesterday. I think anyone who only gets two or three hours of sleep would be tires! LOL By the evening I was in tears. Just tired, worn out, Collin was extra hard because he was very tired and didn’t feel well, Regan feel off the bed an hurt herself and the place is a mess because they are remolding their kitchen down stairs. I am not complain I am actually laughing as I write this just because now (this morning) it is funny to think of what a crazy day it was. We all have those days.

On a very good night though Collin slept through the night last night!!! He slept until 5:00am in his own bed!!!! I fell asleep on the sofa by 8:30 last night just because I was so tired. Jason woke me up and had me go to bed then before I knew it, it was morning and I GOT SLEEP!! Wow, it feels good! LOL Collin ended up in bed with me and is still sleeping in my bed!

We are getting ready for the Marathon in March don’t worry you will be receiving donation letters in the mail soon. If you would like to make a donation on Collin’s behalf to the Junior Blind of America please e-mail me Collin Presley@aol.com and I will give you the information you need. Also, I am very excited about he Donate Life Marathon in April. I didn’t want to say anything in the last entry until I talked to her mom but I am going to run it with an angel on my back to carry me through. Our dear sweet little Angel Katelyn received LOTS and LOTS of blood while she was here on this earth with her mommy and daddy and although she still did earn her angel wings it made it possible for her to stay here with her family to make lots more memories and pages to add to their “book of happiness”. I know that sweet Katelyn looks out after my little man. On the VERY hard days and night when he still manages to smile I know it is because one of his angels is helping him through it. So, I am honored to have little Miss Puffy cheeks’ picture on my back while I run to promote Donate Life!! Thank you guys for letting me do this! (I will post her link if her mommy says its ok)
Yesterday Collin got another package from Eli’s angels with a wonderful movie in it!! Oh wow you have no idea how badly he needed something to cheer him up! I don’t know how you do it but it always comes at the right times. Also, the kids got a special coloring book from Miss Pam last week! Thank You!!!

We are VERY excited to see my brother and his two kids on Thursday!!! We are planning on going to Disney Land on Friday assuming Collin feels ok. We can’t wait to see them and get some good ol’ Texas hugs! I am sure that I will update with LOT of pictures soon!

Thank you for stopping by to check in on my little man!! Please be sure to sign the guest book!
BIG HUGS,
Julie
(mommy)

Tuesday, January 31, 2006 11:14 PM CST

I am sorry that I have not updated in a bit but we got a virus on our computer!!! YIKES!!! So, because of the virus I was unable to open my e-mail and everything else. Well, because of this I was unable to get Taryn’s phone number and we were unable to meet up with them this weekend! L We were all very bummed about that. We are going to have to drive up there to see them SOON!

So, other than our computer drama what has been going on with our life….. Collin has been doing pretty good. He has had good days and bad ones. We had a nice day on Saturday!! Collin has been able to go to school and he has loved every second. He even took 11 steps today. Yes, It is not any where near his 28-30 steps but at least he is doing something. It is better than he has been doing.

I have been swamped with projects that I haven’t had a chance to get done this past month…. Curtains, painting, decorations, sewing, ect. Yes, it is a good amount but I just did a little here and a little there on things that I had already started. I will take pictures and post them. I am doing the curtains and things because YES we go the house!!! We will be moving at the first of March!! I am SOOOO excited. I am so
Grateful for everything that Jason’s parents have done for us but we are ready to be on our own and make some wonderful memories together in our new little place!!

I have also been busy trying to find a home for the ball pit, vestibular swing, and mats. I found a GREAT home for them. Millers Children’s Hospital where Collin has had all of his surgeries!! They said that they would love it. So, I have a feeling that it will not be the last time that Collin uses it.

Not only am I jogging and trying to get in shape for the L.A. Marathon 5K but now my sister in law talked me into doing a 5K in April as well to benefit Donate Life. This is a wonderful organization that does wonderful things. Leslie’s father donated his kidney to his brother and now every year he does an ATV ride across America to bring awareness to Donate Life. It will be LOTS of fun! I was supposed to help with the Donate Life float for the Rose parade but Collin did not feel well and I was unable to. So, this will be something nice to do to honor many of our friends that have received transplants or transfusions to save or prolong their lives.

~Count your many blessings name them one by one… Count your many blessing see what God has done~

I feel VERY blessed to have had a good week. Collin has had a very hard month and was not doing so well. I am so grateful for loving family and friends that support us endlessly. I am grateful to Jason’s Parents. I am grateful to both of my children that teach me SOOO much about myself. I am sure that I am leaving tons out but that is it for now. Things for the most part have been going well. Thank you for stopping by to check in our little man! Please be sure to sign his map up above and also sign the guest book. Thank you!
BIG HUGS,
Julie
(mommy)

Thurs. Jan 26th

YEAH for good days!! Collin couldn’t go to school yesterday but he was so ready to get out and do something … anything .. Just get out of the house. I had been promising Regan all morning that we would go and make her a bear at Build A Bear. (Aunt Nancy sent her a gift certificate for Christmas.) So, Collin, Regan, Great Grandma Jo, and I all went to down town Disney and went and made Regan’s new Minnie Monkey!! She picked out a Monkey and when she saw Mickey ears to put on it she was so excited!! Collin doesn’t much care for stuffed animals sine they don’t interact with him. He had fun just being in the store since it was so bright and colorful! It was so much fun.. See…



(Yes, I did make her outfit and bows!! It was nice to work on something when Collin started feeling better!)

My sweet little man…. I don’t know if you noticed but a good amount of his hair is gone. When he has fevers it falls out and we end up having to shave it off. L

After making Regan’s monkey we all went to lunch at the Rain Forest Café. Wow, this is a very neat restaurant. We NEVER eat out because Collin is just to hard to take any where…. Shoot both of the kids are to hard to take any where. LOL Collin did great at this place because it was so interactive. It had huge fish tanks every where, paintings, vines, animals moving, waterfall, and lots more! It was lots of fun!

Now for those of you that think I left Collin out of don’t you worry. Our next stop was… where else but the book store. Yes, Collin LOVES books. He especially loves touch and feel board books. Sine his vision is limited and he can not turn paper back books with his sweet little hands.. Touch and Feel board books are his favorite. Yes, he got yet another book BUT we were able to find one that he does not already have this time! LOL The last several trips to books stores we have just bought replacement books for the ones that he just loved a little to much and were falling apart. My two little angels crashed the second that we got in the car…

Oh, it was a nice day overall. All of us needed to get out of the house (including me!) Collin wasn’t feel so good latter in the evening but he did good for the most part of the day.

Today has been a good day as well. After taking Collin to get another pair of frames… Yes, he broke his glasses AGAIN last night! LOL He went to school for a couple of hours!! They said that he was so excited to be back!! After missing school for a week I am sure that he needed a break from mommy! LOL This weekend we will be going to the aquarium. Every year they have a special weekend for handicap people and their families. They have wheel chair dancers, vendors, and so much more. We have been for the last 3 years and loved it. Little Miss Taryn and her family are going to come and meet up with us for it this year! We are so excited!!

Thank you all for checking in on Collin and for all of the many prayers that are said for him. We are truly grateful for all of you and the love and support that you show us!!! BE SURE TO SIGN HIS GUEST BOOK TO LET US KNOW YOU WERE HERE!!
BIG HUGS,
Julie
(mommy)




Wednesday, Jan 25
Well, things are starting to look a little up. Thank you Uncle Bubba for wish on a star last night!! Collin slept last night and woke up with a smile! Need I say more… he had a hard time off and on all day but he is doing much better! Yeah!! He kept dragging his shoe over to me begging me to take him some where. When he started doing this I knew that he was starting to feel better!!! Yesterday we got a VERY special package in the mail for Eli’s Angels. Thank you so much for Collin book, book marks, and card!! This is an amazing group and family!!! www.elisangels.org

Regan reading Collin his new book!! LOL It had dinosaurs so she kept saying roarrr… roarr…

I thought I would put in some pictures of our night at Disney Land before it all went bad!

Regan and Miney Mouse



Collin and daddy just before Collin started hurting and had to be carried out.

Thank you all for you love, support, and prayers. I will hopefully be signing guest books soon.


BIG HUGS,
Julie
(mommy)

Monday, January 23, 2006 9:16 AM CST

Well, I wish that I could update that things are better around here but that is just not the case. Collin is not doing well at all. My poor baby. It is amazing what a simple cold can do to him. We ended up having to go in over the weekend. I feel like every time we go in I am on my knees beging them to help my baby. They sent us home with meds for him. The dr. has been calling and checking in. We all want to keep him from being admitted seeing as how he would end up sick with something else. So, I miss my little man so much.... I miss his smiles, his playing and being honory with Regan, and just his laughter. He is so out of it and weak. I am so worried about him. Please pray for my baby. Regan is doing much better. She was over it in a day or two. To her it was just a simple cold anoying but nothing serious. I am glad that she is well seeing as how all of time is going to Collin. Thank you for stopping in to check on Collin. (He is still sleeping and I need to get some things done before he wakes up.) Please be sure to sign the Guestbook. Thank you!!
BIG HUGS,
Julie
(mommy)
BE SURE TO SIGN COLLIN"S MAP THE LINK IS ABOVE THE JOURNAL ENTRY

Sunday, January 15, 2006 10:23 PM CST

Friday night update:
This will be quick seeing how Jason is cuddling Collin since he has already woken up several times and it is only 9:20pm here. Collin has not been doing well. He has a cold, fever, ect. This on top of all of the pain he is in has not been easy on him, Regan, Jason, or I. It has been a sleepless, tear filled, stressful, and hard week. We took the kids to Disney Land on Thurs. hoping that it would help Collin get his mind off of things... Well he ended up crying tears even through one of his favorite rides. Daddy had to carry him out of the park. He wouldn't even sit in his wheel chair. Regan is not feeling very well either. Please pray for both of my babies to get over this cold. Please pray for my little man that this pain will give him a break. Please pray that we stay out of the hospital this weekend. Thank you all for your love and support. I need to go and lay down since Jason is going to take the first shift. A HUGE thank you to Nana for watching Collin so that I could get a nap today.
BIG HUGS,
Julie
(mommy)


Well, this week turned out to be a hard one. Collin has not had a good nights sleep since the last one I wrote about. He is in a TON of pain. He can not sleep. He hits his head on the head board so then we pick him up to protect him from himself. Well, then he takes it out on Jason and I. Last night was pretty hard. Jason is such an amazing dad. He stayed up with him ALL night. I had to tend to Regan and dozed off ever once and a while.

We have had our good moments and our not so good moments this week…. Let me explain. Collin’s teacher and I have both been VERY worried about Collin not walking. He went from his amazing 26 steps to maybe taking 5 if he is forced. When I went to pick him up from school Regan and I started down the hallway and we could hear him crying. We hurried up to the office where Collin and his teacher were. She had taken him in the office to work on walking with him. He tends to walk better if there is something that he wants to go to. He loves the counter in the office so in the past she would have him walk to it and he would do great. Well, I am sure you can tell where this story is headed. He started to walk and she could not catch him in time and he hit his head hard on the counter. So now he has a bruise and knot on the other side of his head. POOR BABY!!!

I have been worried but this whole thing has had me even more worried about my little man. It looks like one of two things are happening. One- it could be his bones. They have said that his osteoporosis is bad and that if they don’t start this treatment he could start fracturing his bones. So, he could be doing it or it is starting to really hurt. 2nd- the one that I don’t want it to be. We know that white matter has taken over his T2 area of the brain (communication) at one point in time Collin’s vocabulary was up to around five or six words. He could say Momma! Since the white matter took over that area he can not say anything. He babbles and tries to say “out”. Anyways, if the white matter is now taking over another area of his brain (mobility/ balance) than this is not a good thing. It will continue to take over each area of Collin’s brain until our worst night mare comes true. Those of you who have children with MITO can probably relate to the white matter. So, I have been sad at the possibility that this beast could be taking one more area of his life away from him. I guess the hardest part for me as a mother is that there is not a thing that I can do. There is no treatment, no cure, NOTHING! We have been told several times “It is quality of life not quantity of life” Ok, well considering he is in pain ALL of the time and we are on a silly waiting list to get him seen by a pain specialist … I just doesn’t seem fair.

So, where do we go from here. Collin is having his DEXA scan done. I had to reschedule it because of the surgery. If that is not as bad as they think and the treatment does not help then I will ask his Neuro. To do another MRI to see if the white matter has progressed. I know that there isn’t anything that I can do… I just want to know. His doctor is also wanting a liver panel done on him. He is getting very orange/ yellowish and they are worried about his kidney function. (Yes, one more thing!)

Ok, enough of my complaining…. I just had to get it off my chest. I know that many of you truly understand and can relate to every emotion that I am feeling right now. … sadness, fear, desperation, and of course gratitude for the good moments.

So, onto our good moments. Yesterday we had a fun day. Jason had to work in the morning. When he got home he planned a daddy daughter date with Regan. He took her to get an ice cream cone and then go to the toy store. So, while they were having fun Collin and I walked around the mall, rode quarter rides, rode the ponies, and did our own thing. Then we met up and had some fun family time. It was a very nice afternoon for everyone.

Thank you for checking in on my little man!!

BIG HUGS,
Julie
(mommy)



Thursday, January 12, 2006
This past week has been a roller coaster. Collin was doing well on Monday then Monday night was a TOTAL different story. He was up ALL night in pain. I think he slept maybe 1 ½ hours. He kept head butting me because he was hurting so bad. At one point he head butted me so hard that his nose started bleeding. Of course that means that Jason and I didn’t sleep at all. We were all a very big mess. Jason and I broke down crying because we were so worried about him. Then Tuesday night he had yet another hard night. Wednesday was a hard day and I didn’t know what to do. Since he can’t tell me what is hurting him it makes is hard to know were to start. After LOTS and LOTS of prayers Collin had a good nights sleep last night and woke up a very happy little boy. He went to school and had a GREAT day. So, I decided to take him to get his pictures taken since he was having such a good day. He didn’t want much of anything to do with it. Then I tried to get pictures of the two of them made…. Yes, an even bigger fight. So, we left with out any pictures. I was so frustrated. When I went back to look at the pictures I was so sad because Collin looked so “handicap” in all of the pictures. I know some of you are thinking what is she talking about he is handicap. Yes, I know but when he smiles I don’t see his handicaps at all!!! In all of the pictures they took he had a blank stare that just didn’t do him justice. (So, like I said I didn’t buy a single one.)

When I got home I was so sad but then decided that I would just have to do it myself!! LOL (I will take him back another day.) I did get some cute pictures of the kids tonight. So, please enjoy…….


Ok, minus the drool and dirty glasses it looks pretty good. LOL


Regan has sucker all over her face!! LOL

THE TRUE MEANING OF FRIENDSHP……..

A good friend will always share their sucker!!


A good friend will always give you hugs when you don’t feel good…..


And a good friend will let you know how much you are loved!!!

Yes, I know they are not as good a professional….. But I love the sucker face, drool, and everything else that went with it!! “If you change the way you look at things, the things around you will change”

BIG HUGS,
Julie
(mommy)

Monday, January 9, 2006 3:44 PM CST

Hi to all of our beautiful friends and family!

Collin was well enough to go to school today!! He was so happy to be back!! (So was Regan!! LOL) I also brought over a tumble form swing for the school. It is an old one that goes with Collin vistibulator swing that we no longer have space for. L We are also having to try to find a new home for Collin and Regan’s beloved 6 foot by 6 foot amazing ball pit. It will all be missed BUT (fingers crossed) We will hopefully be moving out of Jason’s parents home and into our own little place soon. Assuming all goes well we will be moving out next month. Please say a little prayer that all goes well!!

Regan is on the mend. She still has a touch of diarrhea but it getting back to her silly self. We all missed her smile, dancing, and silly behavior over the past week while she was sick. After we took Collin to school I made a deal with her. If she ate her breakfast than I would take her to gymnastics. She was so excited and ate all of it!! So, yes after taking a walk we went to gymnastics. She was so excited to be out and playing again. It was so wonderful to see both of the kids so happy this morning!!!

Ok, so what is my New Years resolutions? Well, I have a list a mile long and I am sure I will not accomplish half of them but the most important one right now is to get my big bootie in shape!! LOL The L.A. Marathon is coming up and I need to get back in shape. Yes, all of our friends and family will be receiving donation letters soon to ask for your support in our efforts to raise money for the Junior Blind of America (Formerly foundation for the Jr. Blind). This is an amazing organization that has helped our family in so many ways. So, we are trying to pay it forward. This will be our second year and we are hoping to get LOTS of people to participate with us!!! GO TEAM COLLIN!!!!!

I was talking to a friend the other day and we were saying how amazing it is that families with handicaps/illnesses do so much for others. I have seen so many other families send care packages, bring meals regardless of the time strain, help finically when they don’t have much themselves due to medical bills, participate in charity events and raise funds and awareness, and most importantly they PASS IT ON. I am amazed at times how hard some people lives can seem yet they still find the time to leave kind words for another hurting family. I see families that from outward appearances seem to have it all money, health, children, religion, home, ect. BUT I have noticed one big thing. It seems as though the ones that have children with illness, little money due to medical bills, a small home or not even a home of there own, faith in God, BUT they also have such a HUGE understanding of compassion and gratitude. They have come so close to loosing someone, or maybe even lost someone, lost their home, money, and maybe even friendships BUT they did not give up or get angry. They are grateful for the time that they did have. They try to help others who are in the same situation that they were once in before they beat the beast. To all of you that live your life to pass it on to others I say Thank you! Thank you , forgiving of yourselves despite your situation.

I was once asked “Why?” Why do you try to do so much??? Well, this is my reply to that question. I am lucky enough to have a son who is perfect in every way. He will not sir come to satin or sin. He only sees the good in people and forgives as Christ did. He is grateful for each day regardless of the pain and frustrations that come with it. I have a feeling he came to earth knowing that he was going to be in a “special body” but wanted to come any way to be with our family. So, how could I not want to do so much. I must strive EVERY day to be better for him. I must do my best to be positive and help others because I have the best example. I don’t know if I will ever be as good as my 5 ½ year old son but I will live the rest of my life trying!!!

I hope that you all have a wonderful week!! We love you all tons!
BIG HUGS,
Julie

Thursday, January 5, 2006 9:58 PM CST

Friday update~
Ok, so my little hero acts as if nothing at all happened yesterday!! If only I can be half as good as him when
I grow up!!LOL He truly is amazing!!! This was his 9th surgery... pretty soon he will be in the double digits!!LOL I tell you he was an ol' pro. I was talking to a lot of the other parents and "older" pateints. They all thought that he was just GREAT!! He touches everyone!!

I spoke to soon about Regan. She is still throwing up. We are going on the 4th day now. The dr.'s office said it could last up to 6 days!!!! I am just trying to keep the two of them apart so that Collin does not get it from her becuase he would not be able to handle it and he has NO weight to loose at this point. (he did gain a pound when we went to the doctor last week!! He is up to 23 pounds!!) Collin got the flu shot and Regan did not so I am hoping that becuase of that Collin will stay healthy. Poor little Regan though... oh she is so sad and frustrated with all of this. I think if I offer her eggs and water one more time she will hit me!!LOL

Yesterday Collin and Regan got into like any "normal" brother and sister. I was holding Regan when we got home from the hospital and Collin was having fun playing. Then he saw me holding her and got jealous!! (Yes, he is used to getting all of the attention!!) Even though he felt fine he had to come over and beg to be picked up. When I did not do it right away he went to bite Regan. When Regan saw this she started kicking and hitting him. Oh, the joys of motherhood. I alway joke and say that I ordered a third arm but it just has not come it yet... a third arm would have been nice yesterday!!LOL This week was VERY hard to put it best but I am so grateful for it. I am grateful for the hard weeks and days because it makes me grateful for the good ones even more when we get them!!! Boy, I truly love my life!!! Yes, some good days would be nice right about now but I am just glad that I have both of my children here with me to drive me crazy!!LOL

PLEASE PLEASE keep our sweet little friend Devin in your prayers. They got some very hard news and could really use some support and love right now!! BIG THANKS!!! We love you so much!!!

So, no trips to Disney Land, the zoo, or to see the fish this vacation from school BUT we survived!! I am amazed with each new set of crazy trials how strong I end up at the end. While I am in the middle I feel so weak and incapable of the task but then at the end I can look and say YES I made it through the week, night, surgery, bad news, or what ever it might have been that time!! Thank you all for your love and support!! A HUGE thank you to my big brother who is going to come out and bring his kids to see Collin and Regan next month!!! YEAHHH!!! We need a good old Texas family fix!! We will do lots of fun stuff while you are here!!
BIG HUGS<
Julie
(mommy)




Sorry I am just now updating. I know that some of you have checked in to see how Collin is doing. Well, like always he was amazing!! He is such a trooper. He had a harder time with the waitting than he did with the procedure. They changed the sugery time wih out telling us so instead of it being at 7:30 like we thougt it was at 8:30.... yes a lot of waitting!! Collin came out of the sedation great!! He was be cranky at first (of course) and as soon as daddy said do you want to go out he perked right up.

Regan is feeling bette today. It is a much needed blessing that she is feeling good. Yesterday I was broken down from the past week. Regan being sick and not being able to take care of her, having to take Collin the doctor, pre-register at the hospital, and all of the sleepless nights did not help. So, I am so grateful that I made it through this week with my head still attached! LOL I can't wait for the weekend and hopefully a nap!!LOL

Thank you all for your prayers. They were heard and answered!!!! We are all very grateful for the love and support that you give our family!!
BIG HUGS,
Julie

Tuesday, January 3, 2006 10:59 AM CST

UPDATE~
Collin will go in for surgery on Thursday. It is out patient so we should be home the same day. Please keep him in your prayers.
Thank you,
Julie


I don't want to seem like all I do is complain lately but man.... wow things have been hard. Collin is still having a very hard time with not being in school. He is still in a lot of pain and yes, I am taking him to the doctor today. Last night Regan started crying I went in to check on her and she was laying in her vomit. So, yes another sleepless, vomit filled, hard night. Poor thing.... I just turned on baby einstein and got a blanket and pillow and the two of us camped out on the sofa. After she got all of her food out she would dry heve (sp??). She would sit there and say "all done, all done, all done" and then continue to dry heve. So I think I got maybe two hours of sleep. Then Jason came out and told us to go to be at around 5:00am. She let me lay her in her bed whitch was wonderful. Then I climbed in bed with Collin (who had alredy made his way in there with daddy last night.) Then Collin starting crying in pain. So much for sleep!!! LOL Nana took Collin with her to the store this morning so that Regan and I could get some sleep BUT Regan does not want to lay down. Thank you for your help Nana!! Please keep both of my babies in your prayers please. They are both having such a hard time. Thank you so much!!
BIG HUGS,
Julie
Please forgive any spelling errors. I am typing on no sleep!! LOL

Monday, December 26, 2005 10:10 PM CST

Saturday Dec. 31st~~
Happy New Year!!
Oh goodness this has been a tough week. Collin has been having a hard time since he is out of school and his schedule has changed. Regan has had a hard time because Collin is taking up a lot of her mommy time. They have been picking on each other like a "normal" brother and sister would do. Collin turns off the T.V. when Regan is watching something he doesn't want to watch. Regan is pulling him around like a little mommy and telling him what to do. They are driving each other CRAZY!!!

Collin has been in A LOT of pain lately. Poor thing has not slept in days!!! Yesterday was the breaking point for both of us. He was at a point where none of the meds were working and I could not comfort him. He was crying and hurting himself and me. After fighting with him for a long time I broke down in tears. It is so hard to watch him like that. It is so hard on me and my body as well. I hate days like that becasue I feel like such a bad mom (I know that I am not but that is just how I feel.) Since I can't make him feel better or do anything and when I loose it I just feel like a bad mom. I wish that we could meet with the surgeon earlier about the surgery but they are moving offices and will not be in their new one until Tuesday and we will be one of the first appt.

I am sorry that I have not signed as many of the GB as I would have liked but life like always is crazy. So, I ask you to all PLEASE pray for my little man... pray that he can get the sleep that he needs and that he will be comfortable until his surgery.

We wish all of our friends and family a beatiful New Year. We hope and pray that this new year brings each of you..love, good health, peace, comfort, strength, blessings, and lots and lots of HUGS!!!

BIG HUGS,
Julie
(mommy)
To realize
The value of a sister
Ask someone
Who doesn't have one

To realize
The value of ten years:
Ask a newly
Divorced couple.

To realize
The value of four years:
Ask a graduate.

To realize
The value of one year:
Ask a student who
Has failed a final exam.

To realize
The value of nine months:
Ask a mother who gave birth to a stillborn.

To realize
The value of one month:
Ask a mother
who has given birth to
A premature baby.

To realize
The value of one week:
Ask an editor of a weekly newspaper.

To realize
The value of one minute:
Ask a person
Who has missed the train, bus or plane.

To realize
The value of one-second:
Ask a person
Who has survived an accident.

Time waits for no one.
Treasure every moment you have.
You will treasure it even more when
you can share it with someone special.

To realize the value of a friend or family member:
LOSE ONE.


Happy New Year!


Peace, love and prosperity to all!

Remember...
hold on tight to the ones you love!

Love,Jason, Julie, Collin and Regan





Wend. Update:
I ended up having to take Collin into the doctor yesterday. They gave him an injection and he didn't even flintch. He is so used to getting poked that he just looked at her and then gave me a high five when it was done. It looks like Collin is going to have to go in for another surgery.(This will be number 9!) I meet with the surgeon on Tuesday. I will let you know how that goes. Collin also has his dexa scan next week so this should be another crazy week!! Regan is a little under the weather. The wonderful thing about family is that they share everything including germs. LOL I think Regan caught a little bug from her cousin over Christmas. The wonderful thing is that Collin does not seem to have it (yet). So, I am just trying to keep them from kissing or loving each other for now. Thank you all for your love and support.
BIG HUGS,
Julie
(mommy)

I can’t think of a better way to describe our holiday than with pictures. So, prepare to be initiated with LOTS of pictures!! Enjoy!!


Our fun Girls day of baking cookies!!

Regan did LOTS of tasting!

Playing with pots and pans was the closest Collin got to baking!!LOL

Christmas Eve day we went to Uncle Bryan’s work party. He works at a bowling alley and they got out a special ramp so that Collin could bowl and enjoy the fun!! Thank you Uncle Bryan!!




Later in the day we had Christmas Eve dinner with everyone and then the kids had a very special visitor!!

The kids singing and getting ready for Santa!!


WOW it’s Santa!!!




The kids all dressed up in their new clothes for church Christmas morning!!

After we got home and changed our clothes it was time to have fun opening presents!!



Collin was VERY excited to get his new wagon from Maw and Paw!! It has seat belts so he won’t fall out!!!! Collin and his little cousin Shane had a blast breaking it in!!

Regan got a play kitchen and had no trouble making breakfast for everyone while talking on the phone!! LOL

We had a pretty good Christmas both of the kids got LOTS of toys and things. A BIG thank you to all of our friends and family that sent them things. They LOVED it all!! Collin was off and on all day Sunday with not feeling well. He threw up several times… just very over whelmed by everything and everyone.

Today he had a hard day. It is so hard to watch him in so much pain. I was feeding him dinner tonight and he was not doing anything and two little tears were coming down his sweet little face. He is such a trooper though and amazes me!!! He always seems to smile through the tears!!! He is my Hero!! Thank you for stopping in to check on him!! Thank you for all of your on going love and support through this journey in our lives!!

"Don't ask for a light load, but rather ask for a strong back." ~ unknown
BIG HUGS,
Julie
(mommy)

Friday, December 23, 2005 12:43 AM CST

Merry Christmas to all of our friends and family!!
We are so grateful for all of the love and
Support that each one of you have given to our
Family this year. It has been a hard one but
With the love and support from those important to
us the hard days just don’t seem as hard. Thank you
For picking me up many times when I was down,
Listening when I needed to cry, helping out with my kids,
Stopping by to let me know you cared, helping get a wagon,
Cards, e-mails, and all of the happy mail that you have sent
To cheer up my little man!!! I am so thankful to all of you
And truly wish you all a VERY MERRY CHRISTmas!!!

I am so thankful to have a day to celebrate our dear
Savior’s birth. To reflect on all that he has done
For all of us. With all of the presents and gifts it
Is easy to forget the true reason for CHRISTmas and
That is to celebrate our Lord and Savior Jesus Christ!!
MERYY CHRISTmas!!!
BIG HUGS,
The Presley Family

Wend. Dec. 21st

UPDATE~~ Ok, so I have to tell you the wonderful news I got when I picked Collin up from school today. HE AT AN ENTIRE REAL BANANA!!!!! Of course they had to mash it but this is a first and I am SOOO PROUD of him!! I have already called all of the family to let them know!! LOL I know that you must be laughing and thinking oh your so silly BUT this is a HUGE thing in "Collin's world". Oh, I am just so excited and proud of him!!!!! I am very busy getting things together for CHRISTmas. I will update with LOTS of pictures after CHRISTmas. Today us girl are baking!!!! Yesterday I was able to go out with two of my sister-in-laws and get our toes painted!!!!! WOW, how exciting is that!!! I don't know how long it has been since I have done that!! Thank you Nana for watching the kids so that I could get out for a bit!!!!
Well, that is all for now I have to run!! I miss signing GB but I check on all of our friends daily!! I will be back to signing soon!!!
BIG HUGS,
Julie
(mommy)

I hope that this update finds all of our friends doing well. Collin has been up and down as far as how he is feeling. So, we are trying to make the most of the up times. He has not slept good in over a week. So, needless to say it is hard enough for me to put one foot in front of another let alone update. LOL Friday Collin went to school and had a pretty good day. Then latter in the evening we went to a Church Christmas party. Both of the kids had lots of fun. Collin got tired very quickly and we had to make an early exit. Collin was very excited to see Santa He LOVES Santa’s beard. I have a good feeling it is because his Paw has a beard. Regan has not as keen on seeing Santa.


Collin and Santa

Regan and her buddy in their matching pants that mommy made them!!


Then on Saturday we woke up to a very nice cloudy day. There was LOTS of house work to be done but rather than do house work we decided to go to the L.A. Zoo. Collin was not doing so well after we got there so he wanted to be carried by daddy most of the time. It was a short trip but a fun one. Both of the kids enjoyed being out of the house.


Can you see the Monkeys???

Mommy and Regan with the elephants!!

Daddy and Bubba with the giraffes.

Regan crashed on the way home!!!

All of our family and friends are in our hearts and prayers. I am sorry that I have not been by to sign guest books but life has not let me do it lately. Hopefully things will settle down soon so that I can come by.
Oh, by the way this morning I took Collin to see his Endocrinologist we both decided to put off his dexa scan. He was supposed to have it done tomorrow. BUT because lf everything that happened to him last week and the new reaction to the sedation we both feel that it would be wise to wait a bit before doing the testing. I told him that I know that Collin is still very weak from last week and if something happens to him tomorrow then we will most likely be in the hospital for Christmas and that is no fun!! So, he agreed that no pushing it and having a good holiday was the most important thing.

Thank you all for your love and prayers.
BIG HUGS,
Julie
(mommy)

Tuesday Dec. 13th

Ok, so I know that some of you are waiting for an update. Collin is doing well and like always a complete insperation to me!!! Even after all that he went through he had a smile on his little face. He went to school today and is getting back to himself. The dr. gave me valume to give him if he has another episode this bad again. She also upped his seizure meds. So, hopefully this will not happen again!!! I want to say a HUGE thank you to all of our family that has been calling to check on our little man. I think EVERYONE has called. Jason has five brothers and sisters and I have four so we have a big family and they have been checking in. Thankyou!! Thank you to all of you that has sent happy mail!! We love all of it!!

PLEASE keep Collin's little cousin in your prayers. He is still needing them. Canden

Also, PLEASE keep our little friend Devin and his family in your prayers. They got some scary news and could use your prayers. Devin

Thank you all for your prayers, sweet notes, phone calls, love, and support. I am amazed at the strength that Collin has. He truly is my HERO!!!!
BIG HUGS,
Julie
(mommy)



2ND UPDATE FOR COLLIN WEND.
I spoke to soon. We thought Collin was doing good and then he took a bad turn. He started having seizures and foaming at the mouth. He went limp and passed out. This went on for an hour. IT WAS SO SCARY. This was unlike any that he has ever had. I was walking the kids down to the park to get them out of the house and the sun was going down. Luckily I grabbed my phone on the way out. It breaks my heart that we can't even just go to the park!!!! Anyways I called up Nana and she met me there. We loaded up the kids and the stroller. We called 911 and waited. His doctor called and was also very worried. We ended up taking Collin ourselves becuase something happened with dispatch. The dr. had alread called and go us right in. After a little bit it started to calm down and he was getting his strength back. It took SO MUCH out of him. It was so scary to see him so limp, white, and passed out. We are monitoring him now. PLEASE PRAY FOR MY BABY. THANK YOU!! I have to run.
Julie
(mommy)

COLLIN UPDATE~~~~~~~
Collin did good this morning. He was s total trooper like always!!! He had a hard time coming out of it but he did good. When we got home he ate a little and then crashed for about three hours. That is a very good thing. When he is up after this then he will try to crawl and just take a face plant right into the ground. After he nap and some good cuddle time with mommy he woke up in a very silly mood. He kept looking at his hand and laughing????? Who knows what was so funny. I want to say a BIG thank you to Nana who watched Regan all morning. It is always wonderful to know that I have such a wonderful family around that I can call on at any time!! Thank you!!!
Here are some pics from today. Most of them are with my phone so they are not to good. Thank you for you love and support like always!!
BIG HUGS,
Julie
(mommy)

Waiting to get started.



My poor little guy!!!


This afternoon peeking out of the tent and getting to be back to himself!!




I need you all to please pray for my little man. I found out today that Collin will be going in for tests tomorrow. He has to be sedated for the testing. I am always a nervous wreck when Collin has to go under. This makes me even more nervous because Collin has to have other testing done next week (20th) and has to be sedated for that as well. This is going to be a lot for him. Please pray for him!! He is in good spirits and is a constant inspiration to me. Also, please pray that these results come back ok and that Collin is going good. Thank you all so much!!!
BIG HUGS,
Julie
(mommy)
PLEASE remember Collin's little cousin in your prayers as well. Caden had to be air lifted to Dallas last night. PLEASE pray for him!! Thank you!!!



Saturday Dec.10th
I just wanted to write to let everyone know that we are doing ok. It has been a long emotional week but I am going to focus on the positive. Today was a good day. Collin felt well for pretty much most of the day. My mom met up with us down here and we went to the mall. When we were there we adopted four children from the angel tree. So, instead of getting things for my kids we had fun picking out things for other kids. We were excited to find kids on the tree that had asked for things off of Christopher’s Christmas list. We had fun. Then my mom and I met up with some friends at a special discount Disney Store that only Disney Land employees can go to. We got lots of things. Things were cheep there and I found some great things for some of our CB friends.

Latter in the evening we decorated the Christmas tree that we got this morning. It was fun. Regan had a hard time though. She ran into daddy and dropped her new ornament. It fell and tinker bell’s wings feel off. She was VERY upset about that. Collin LOVES the bright lights on the tree. I am grateful for good days and wonderful memories. I am thankful for all of my family and friends that support us. I am thankful for this holiday season. I am thankful for my Savior Jesus Christ. With out him there would not be a reason to celebrate. Thank you for stopping by. Please keep our friends in your prayers… Hannah, Maria, Sammy-Joe, Jacob, Caden (he is in the hospital), and all of the rest of our sweet CB friends!! We love you all!!
Oh, Thank you to Kari, Devin, and Kara. We got both of your packages today. I didn’t let the kids see it. I put the presents right under the tree until Christmas day!! Thank you for thinking of them!!!

BIG HUGS,
Julie
(mommy)


The kids get a new ornament each year. This is Collin’s new one!! It is from Disney Land of course!!


Regan with her new tinker bell ornament!!






It was a nice evening. Just wanted to share!!!

Wend. December 7th

I am sorry that I have not updated since Regan got sick. She is on the mend and doing well. Things have been very hard for me the past couple of days. When I took Collin to school yesterday I found out that one of his classmates died. It broke my heart. Ryan was my “boyfriend” . He was always a flirts and smiling at me. I didn’t cry when I was in his class but then when I was talking to the nurse in the hall way and she started to cry it just set me off. I was hoping to make it home before I broke down. When I got home I couldn’t do any of the things I had planned on. I was very sad for him, for his family, and it makes me terrified of Collin’s future. We have been to more funerals than I would like for Collin’s friends that we have met over the years. It is heart breaking.

Ryan is the beautiful doggy on the end. Please say a special pray for his family tonight.

Today I helped get together a collection from the school to give to his family since the funeral is such a hard ship. The principal is going to watch Collin’s class so that his teacher can go to the service. Nana is going to watch the kids for me so that I can go tomorrow. For my own selfish reasons I don’t want to go but I need to be there for his mother. Since I am on the PTA board I talked to them about all of it and we as a organization can not give the family but feel as if there is something that we should do. So, we are going to plant a tree in the yard by their class in his honor. So, when ever his family, classmates, teachers, or other parents see it they think of him.

I have faith in God and in his will and in his time but I would be lieing if I said that I wasn’t scared out of mind of loosing my little boy. The thought just breaks me heart. I know that I should focus on the positive and that is what I am doing now. Yesterday after I broke down my mother-in-law saw me and said “ok, you have had your cry and let it out. Now pull yourself together and live your life.” That is all that I can do …. Live my life. Luckily I have to wonderful children to share it with this holiday season.

I have a special favor to ask. Our sweet friend Christopher that passed away last month started making a Christmas list before he died and his mother is asking all friends and family to buy one thing off of the list and give it to a little boy that is sick, in need, or even a charity. I think that this is a WONDERFUL way to honor him to holiday season. Please stop by and see if there is anything that you can give to someone in his honor. Thank you!!!

We love you all and are so grateful for your support!!!
BIG HUGS,
Julie
(mommy)



Monday Dec. 5th
I wish that I could say that today was as good as yesterday but not so much. At about 1:00am Regan woke up vomiting. So, yes another night again with now sleep. I am SOOOO tired. It has been a VERY long and hard day. Collin had a hard time because Nana had to take him to school. They said that it took him about an hour to cheer up because I didn’t take him. I had a hard time with Regan being sick today. This is the first time that she has been really sick. She is nothing like Collin. He will not let me out of his sight and wants to be held the entire time. Well, Regan wanted her space. This is how she spent a good part of the day…..


She did want lots of cuddles also especially after she threw up. Poor thing. She did get something in the mail today that cheered her up. I don’t know how you do it Mrs. Pam but you always seem to cheer my kids up when they need it….



Later in the day I looked over and this is how I saw Collin….


Yep he climbed up there all by himself so that he could kiss his pictures. I kept watching and before long he was standing!!! What a stinker!!

Please keep both of my kidos in your prayers. Thank you so much!
BIG HUGS,
Julie
(mommy)
HAPPY BIRTHDAY TO OUR SWEET FRIEND TARYN!! WE LOVE YOU!!!


Sunday Dec. 4th
Hi to all of our friends and family. Agghhh, I can finally sit down and write a real update. I am asking for forgiveness ahead of time for typos or miss spelling. I have not had sleep in three days and there is a good chance that what I write might not even make since.

Collin had a VERY hard day on Friday. It was very scary for everyone. He continued to vomit through out the day. I don’t know if he had seizures all day or if the morning ones just upset his tummy. (I think it just upset his tummy) Latter in the day when he was vomiting I just cuddled him and held him so that he would vomit on the kitchen floor. I was hugging him and wiping off his sweet little face when he looked up at me and blew me a kiss. It was the sweetest thing. I know that he was telling me in his own special way… thank you mommy I love you. When Collin gets like this he gets very weak and he doesn’t understand it. So, he will try to pull up on things and fall over. Luckily it was supposed to rain on Friday so there were LOTS of beautiful rain clouds all round blocking the mean ol’ Mr. Sun. I put the kids in the stroller and we walked. Boy did we walk I took them to the store, to get lunch, and to his school to swing by and say. We were gone for over two hours. LOL I got my exercise. Hey what ever it took to make Collin happy and keep him off of his feet. I just kept praying that it would not start to rain until we were home and luckily it didn’t rain until latter in the day. Thank you Rosi and Kayla for sending all of those rain clouds our way!!!

Later in the evening I had to do things to get ready for the big party. Of course Collin still wasn’t feeling well and Regan was starting to melt down because she did not get much attention. Daddy stepped up and helped out big time. When I came back upstairs this is what I found…….

How sweet is that!!!! I feel very blessed that we did not end up in the hospital with Collin. This is the worst time of the year for him to be in. He will end up with so many other things and we will be there for a LONG time.

Saturday morning I had my Little Diva Hair bow party. I had a good turn out. I didn’t invite a ton of people it was more good friends and family that I felt close with. I was nervous and wanted to do it with them first. I guess just because I feel “safe” with them. So, about 12 people came and I made a good little bit of money. YEAHHH!!! I am taking a break for the rest of the year but I have a feeling that this will not be the last one!!! I do have to make bows now for the hospital!! I am very excited about that!!!!

When our mail came Collin and I both had packages in the mail!!! Mrs. Pam you are an incredible person!! You are one of the most caring and kind hearted people that I have “met”. I have seen you do so much for so many people!!! You are defiantly a blessing in our lives. Collin got a Christmas pillow case !! So, we took of his pumpkin pillow case which he was not happy about but then he saw his Santa pillow case and he was happy. If that were not enough Mrs. Pam also sent a package for me with LOTS of different beautiful ribbons in it!!! I am so excited. Most of the ribbons that you sent will go to the hair bows for the hospital!!! ( I do have to admit that I will probably make a couple for Regan out of them because they are just to cute!!!)

Collin on his new pillow watching our home movies from Disney Land.

Latter in the day we went and got our family pictures taken. This always turns out very good or very bad. Because of the lights that they use we have to be in and out. Well, Collin did a great job but Regan on the other hand decided that she wanted to be a Diva!! She would sit down and smile if she was by herself but when we were all together she through a fit!! So, the picture didn’t turn out as great as I would have like but we don’t have time to go and re-take them before Christmas. Just another story to tell Regan about some day right????


Jason and I went on our date after we got Collin to sleep. We went to the mall to get our pictures and grab a bite to eat. It was nice to spend time with him just the two of us. Today we went to church and it was so cute. My lesson was about the “Golden Rule” and doing unto others as you would have them do. Seeing as how I am teaching five year olds I never know if they are getting what I am teaching. Well, the kids were getting lined up to leave and I was handing out candy canes and when I got to the last child I noticed that the candy cane was broken. I went into my bag to get him another one and one of the other boys said “its ok he can have my candy cane and I will take the broken one. I don’t want him to be sad.” It was such a simple act but for a child to give up something to make someone else happy just touched my heart!!!
I hope that as we are all rushing and shopping and getting gifts finished we do not loose touch with the true meaning of Christmas. I am so excited that it is on a Sunday this year. We will go to church nice and early at 8:00am and then come home to do presents. I think that this is perfect because our hearts will be in the right place for opening gifts. We love you all so much and hope that you have a wonderful week!!!
BIG HUGS,
Julie
(mommy)
The day after Thanksgiving we were able to see my mom and my sister. Aunt Nancy was visiting from Texas. It was great to spend time with them!!

Collin and Aunt Nancy

It was sunny so we could only be out for a minute but we were able to ride to train!!!
We love you two and are so happy that we got to see you even if we were stuck in traffic it was worth it!!!

Sorry it is so long. I guess I was a little excited to get some time to sit down at the computer!! LOL

Friday, December 2, 2005 11:06 AM CST

Today started off very scary. Collin was in bed with me cuddling then all of a sudden he couldn’t breath and he started chocking and gagging. I picked him up in my arms and then shortly after he started vomiting. VERY scary to see him blue and not doing well. I am just VERY thankful that he was in bed with me and that I was right there. He has continued to vomit all morning. The last time his eyes rolled up in the back of his head. So, yes it all leads me to believe that he was having seizures. He is sleeping now, recovering from this hard morning. Please keep my little man in your prayers today. Thank you!!

Mrs. Pam will you please e-mail me your address so that I can put the pennies and postcards in the mail. I could not find it yesterday.

We hope that all of our friends have a wonderful weekend. Thank you for your on going love and support. It means so much to us. This morning has been hard on everyone especially since Collin has had so many good days this past week. I guess it was just time for a reality check. PLEASE pray for him that he will feel better when he wakes up. Thank you!!
BIG HUGS,
Julie
(mommy)

Tuesday, November 29, 2005 1:34 PM CST

Seasons Greeting from the Presley Family!!!

Things have been going pretty good around here. Sometimes it is hard to know how to answer with Collin because it really does depend on that minute or second and how he is feeling. It can change so quickly. We have had our ups and downs this weekend. For the most part though Collin is doing good. We have not ended up in the hospital yet this flu season and I am praying that it stays that way.

Yesterday was so much fun. Collin was in a great mood and so was Regan. I was playing how much does mommy love you with the kids and we had a blast!! I will ask them how much does mommy love you? Then when they raise their arms to say so much I will tickle them and we will end up rolling around and tickling!! I was so much fun with Collin because he kept wanting me to do it. Then at one point he grabbed my glasses off of my face and just started laughing. He though that he was so funny!! It was great!! Regan hasn’t been feeling very well. Both of the kids have a little something but Collin tolerates it much better than Regan since he doesn’t feel well a majority of the time. If things don’t change by tomorrow I will have to take them both into the dr. (no fun!!)

Jason’s new job is going great. He is really liking it. I am trying to get all of my Christmas shopping done. I was hoping to be done by Thanksgiving… Ha ha ha!!

I want to say a HUGE thank you to our Scottish friend Ms. Rosi!!! The kids loved their package full of goodies. I don’t know if they were supposed to wait until Christmas but they had no part of that!! LOL Thank you for thinking of them and putting a smile on their faces!!

We hope that all of our friends are doing well. After the party this weekend I will get better at signing guest books. I have just had a million things on my plate!! We love you all! Thank you for your love and support!!
BIG HUGS,
Julie
(mommy)
Please keep our friend Maria ( Sammy-Joes mom)in your prayers. She went into surgery on Monday. I called and spoke with her mother and she said that she is doing well.
Also, please pray for our little friend Jacob. He is not doing well. Thank you!

Thursday, November 24, 2005 11:10 AM CST

Today was not a good day for Collin. He was in a lot of pain and just wanted to go. (he wants to be distracted when he doesn't feel well.) Well, since it is a holiday we couldn't go to the mall, wal-mart, or any of the other usual spots he likes to go in doors. To make matters worse they decided to have dinner outside. It was not sunny but Collin just did not want anything to do with being out there. So, I ended up inside with him watching blue's clues while everyone at dinner and visited. :o( I have to admit it was bummer. We took the kids in the car on a ride around the neighborhood. Then we stopped by Collin's school to take some family photos for our christmas card. They weren't great but at this point I will take what I can get. We came back home and Collin was so upset. So, Jason put him in his car and drove around with him for a while. Collin was out by 6:30 tonight and did not enjoy his day today. I hate it when he is in so much pain. He gets so angry so easily and he wants his way or he will hurt himself. It is so hard on everyone. I don't know what I am going to do with him tomorrow to make him happy seeing as how all of the stores will be packed all day????? I am praying for some clouds so we can go on a walk in the morning at least. I hope that all of our friends had a wonderful day. Oh, before I forget.... I got Collin into see the pain specialist. Guess when they could get him in.... Feb. 2006!!!!!!!! No joke!! I took what I could get but this is just to long to make him wait in pain. She said that she would put him on the cancelation list. So, maybe we will be able to get in sooner. I sure hope so.
BIG HUGS,
Julie
(mommy)



HAPPY THANKSGIVING!!!!!!!!!!!! We have so much to be thankful for. I have to amazing children who constantly amaze me. They make my heart smile all of the time!!! I am thankful that I have had many more years with my sweet little boy than the doctors said I would have with him!! I am thankful for my husband and the friend and support that he is. I am thankful for my family that gives constant support and love to us, for our friends that have gone out of the their way to cheer us up or do things for Collin, and for Collin’s teacher and aids at his school they take such good care of him!!! I am so thankful for my savior Jesus Christ and for my faith in God. I know that prayers have gotten Collin through so many things. It is amazing what faith can do for you life, your heart, and your child. I am thankful for all of the sweet children and adults that we have met through CB. I feel SOOOO lucky to have met so many wonderful people that have taught me so many things about life and courage. You are all my heroes!!!

So, today we will spend time together as a family, hug, smile, laugh, and enjoy the day together. To all of you that are spending this holiday season with out your child my heart breaks for you. We love you all so much and pray for you all of the time. We love you all!!

This week has been a pretty good week for Collin. We have been able to do lots of things. Here are some pictures to enjoy!! I am thankful for all of these wonderful memories!!!

BIG HUGS,
Julie
(mommy)


Fun at the aquarium!!


Collin and Aunt Crystal going on Dumbo!!! Regan and Nana getting ready to go on Dumbo!!


Collin and Uncle Bryan and Collin with Aunt Leslie!!


Almost everyone! Leslie, Regan, Julie, Crystal, Nana, Collin, and Grandpa!!!
Collin did ok at first but then he stated having a hard time. I has Jason meet us after work. So, he came to Disney Land in his suite to help with Collin. Collin was VERY happy to see his Daddy!! (Don’t worry we got pennies and postcard!!)

Sunday Nov. 20th 2006

Monday morning update: Ok, I know I sounded very upset in the last entry.. and well I was. BUT I wanted to let you all know that I am doing better today. Rainbows are made from rain and sunshine. You just have to take the good with the bad. This week looks like it will be a good one as long as Collin is feeling well. Aunt crystal is coming home tommorow from College for the week. So, we are going to do LOTS of fun things. Today we are going to the Aquarium with grandpa (he took the week off to spend time with the kids and Aunt Crystal) Then on Wend. we are going to Disney Land with everyone!! (Don't worry Mrs. Pam we will get the pennies when we go!! LOL) Then we are going to go and see Santa at the Mall one of these days also. So, if Collin is feeling well then it should be a GREAT week!! I just hope he is up to it all. It is supposed to cool off and be in the low 70's this week so that will be nice... pray for clouds!!!! We love you all!!
BIG HUGS,
Julie
(mommy)



I have to say that this has been a roller coaster of emotions this weekend. Friday Regan and I went over to Collin’s school to help with the assembly. It was an assembly for the FIT a THON that Collin was in. (Remember the obstacle course.) Well, today they put all of the children’s name that participated in a barrel and pulled them out for gifts. YEP, you guessed it. Collin’s name was drawn and he won a boom box. No he doesn’t need a boom box but it was so neat to see him win something especially knowing how hard he worked. Latter in the evening one of the other PTA moms called to ask me if Collin could use the boom box. I was trying to be nice and said oh it’s great thank you. Then she offered to go with us to the store to exchange it for something that he could use because she still had the receipt. Of course I took her up on her offer and we will go this week. It meant so much that she called and went out of her way to try to make sure that Collin could enjoy what ever he got!!

Things were not so great this weekend. I will not get into all of it. I found out that we will not be able to go to Texas for Christmas. We were trying to go out there to see my family. I wanted to go out there and spend time with my family while Collin is doing well and can travel. I also wanted him to spend some quality time with his cousins. I want them to have happy memories of Collin. I don’t want them to come out here when he is not doing well and remember him that way. I also wanted to get a family photo of all of us together. To be honest I just needed some good ol’ family lovin’. It has been hard around here the past couple months and a family fix would be just want the dr. ordered. Anyways, Jason can not take the time off with his new job and there isn’t anyway that the I could travel with the kids by myself. I would also be afraid to be away form home with out Jason there to help me with Collin. So, that was hard to hear BUT what can you do right.

There were other things that I will not get into but it has just been a hard weekend. Collin has not been feeling well at all. I HATE to see him when he is in so much. It just breaks my heart. I have been VERY busy with bow stuff, Christmas presents. (some of our CB friend will be very excited), and I am also working on bows to take up to the hospital to give out on the oncology ward around Christmas time. Who doesn’t want to do something good around the holidays…. I am hoping that I will be able to continue to do it all year round!!

Thank you all for your love and support. You are all so wonderful I feel very lucky to have such wonderful supportive people in my life. Please continue to pray for all of our caring bridge friends.

BIG HUGS,
Julie
(mommy)












Things here are going so/so. Collin has been having pretty good days during the day but then in the evening and night time he has been in a lot of pain. I know most of you would kick me for saying this but I wish it would get a little cooler here. It is still 88 degrees and warm. This weather and the sun is hard on him. It is November and 88 degrees something is not right!!! LOL

In the evenings Collin has not been wanting to walk with his walker or gait trainer. :o( I can tell that his body is just in pain. Everyone agrees that the pain specialist is the best route. The doctor that Collin’s MAW granter told us about retired so his pediatrician wants him to go to Los Angeles Children’s hospital for his pain management. Yes, it is a good drive but the doctors here are not so sure about what to do with him and they all feel that LACH would be the best because they see so many different things. Also, we are trying to find someone to oversee Collin’s IVIG infusions that the doctors at the NIH back east feel like he should have. Everyone is just so nervous to treat Collin because TTD is so rare. So, while all of these doctors are more worried about “the uncertainties” or what they look like to not have a clue Collin is in pain and suffering!! Sometimes I just want to scream at them. I have even told them that I would sign a waiver because we know that it is about quality not quantity. WHAT DO YOU DO?????????????

Ok, sorry just had to vent a little!! Other than the typical Collin not feeling well everything else is going well. Jason is liking his new job. Regan finished her first session of gymnastics the other day!! YEAHHH for Regan. She was the star!! Great Grandma Jo came with us so that she could see our little Diva in action.

I am still trying to keep busy with getting ready for this party. I know that I am crazy but we could really use the extra money for medical bills when you think of it over the years it has really added up and we ended up putting a good bit on credit card because we just could not afford it. ( I know… not smart but what do you do??) Now we are not only paying for the medical bills but the interest!!! I mean he has had eight surgeries, prescriptions from day one, contacts, glasses, wheel chair, bath chair, walker, hearing aids, co-pays for dr. visits, baby jar food for 5 ½ years, diapers, and that is not the end of it. Yes, we have received help with some of it through insurance but we have had a PPO for the majority of Collin’s life so we are responsible for a good part of the expenses. Anyways, I got side tracked (look at me go) the party will hopefully be good thing to help bring in money just for those things. I have always been the type of person that must do something pro-active rather that sit around and feel sorry for ourselves. So, I have come up with “little Diva” Hair bows. So, not only will little girls look fabulous but I will be doing something from home to help out and so that not all of the pressure will be solely on Jason. Who knows if is will work but it is worth a try right!!!

Collin was not feeling well last night and was having a hard time. He kept wanting me to put him in Regan’s play shopping cart. Mind you this thing is plastic and not very strong. He was SOOO happy when I finally did!! ALL SMILES!! Regan was so excited when she saw him because she wanted to push him. It was nice to seem them playing. I had to keep a hand on it at all times so it didn’t dump over. It was nice to see smiles on everyone’s face!!! These are the kind of moments that I treasure and add to my little bank of happiness. No matter what happened five minutes earlier or how bad he was feeling… that moment made it all better.

The picture isn’t real great because I took it with my phone. I didn’t want to leave them to get my camera!! Don’t you just love that smile!!


I hope that all of our friends are doing well. We love you all so much!! I am sorry that I have not signed in a bit. I have been up to my neck in ribbon!! LOL You are all always in our hearts and prayers. Please continue to pray for our sweet Christopher’s family. Thank you
BIG HUGS,
Julie
(mommy)
V

Monday Nov. 15th

Ok, so you are all going to think that I am crazy. I have had lots of people ask me if I have a catalog with the hair bows in it sine the boutiques that sell them are not real close. The other day I was talking to a mom and decided that I should have my first “Little Diva Hair Bow” Party. (Kind of like a Mary Kay or Cookie Lee party) I don’t know if it is because Collin was feeling so well last week or what but now it has hit me. I have to make a lot of hair bows, belts, and outfits before Dec. 3rd. I AM CRAZY!!! I am excited and scared at the same time. All of the money will go to Collin’s medical bills (well, maybe a little to Christmas as well.) Here are some of the things that are going to be show cased in the first party.

Christmas outfit and hair bow!!

Birthday fun!!




Things are going well. Collin has been feeling very good these past couple of days. Sunday was so much fun because he was ALL SMILES ALL day. He did not seem to have much pain!!! I am amazed at how well he is getting at telling me what he wants. Let me share of couple or example… The other day Collin was hungry and a jar of food was on the ground were he could reach it. He got it and brought it to me to let me know that he was hungry. On another occasion Collin wanted to go outside. He got one of my sandals and worked so hard to drag it as he bunny hoped. Once he got the one sandal to me he went across the room and worked VERY hard (even grunting) to bring me my other sandal. He made it VERY clear what he wanted. Ok, last one. The other night at dinner Collin wanted to go outside because it was dark. We were all still eating and he was very frustrated. He got a hold of my arm and actually drug me and my chair a couple of inches. Let me explain how he did this. First of all I had my feet off the ground of course. Collin was standing and holding on to the door way (since he can not stand on his own.) While holding onto the door way he my arm and pulled with all of his might trying to get me to take him out. Well, my chair and I really did move!!! Not to bad for a little boy that they said would never sit up, crawl, or do much of anything!! I am amazed at his strength. Not only physical strength but his strength in persisting and not giving up!!

Regan is doing good. She is still in her “Sweet” phase of “ MY WAY NOW!!” Yes, I think the terrible twos start long before two. LOL It really isn’t that bad. I am actually enjoying having a child that tests them limits as much as she can.

Thank you for checking in on us! We love you all tons!! I will try to make the rounds soon!!
BIG HUGS,
Julie
(mommy)







It is with a broken heart that I let you know that our very special buddy Christopher became an angel on Saturday morning. Please keep his family in your prayers. We know that you are pain free, running, playing football, and looking over all of your family and special CB friends!!! We love you!!!

I am afraid to say it for chance of it kicking me in the rear but we had a good week!!!! We also had a nice weekend!!! Wow, it was so nice and Collin did pretty well. He was in pain but it was manageable. He is so strong!! Friday Collin had the day off of school for Veterans Day so we decided to go to the Aquarium with Great Grandma Jo. We woke up to a beautiful cloudy day!! YEAHHH!!! We even got to go and feed the birds. Even though it is shaded it was to sunny the last time that we went. We got there at 9:00am to make sure that it was still nice and cloudy out. I think that Grandma Jo likes the birds more than the kids do!! LOL It was nice to see them both having fun. Latter in the day Collin was in a good amount of pain so Disney Land was out of the picture.

Grandma Jo, Collin, and a feathery friend!! Collin was clapping!!

Regan looking at the sharks.

All of us with the whale mascot. (Regan was scared. Collin was laughing.)

Saturday we went to my mother’s house. It is about an hour and a half drive. Both of the kids were great on the way there. When we got there the Poppie, the kids, and I all went shopping. (we found some good deals!!) Jason and my mom’s husband stayed home to watch football. We had fun at the mall. The kids road on the train and loved it. The woman forgot about it and let it go for a while and Collin started to get upset because it went for a LONG time. I had to ask the lady to stop it. Collin was happy to get off. Regan got off grabbed her blanket and wanted to got back on. I think it would have put her to sleep. LOL I am so glad that we got to spend time with Poppie!!!

Can you see Collin’s little head popping up????

Today we went to church this morning. Collin is feeling well and happy!!!! Oh, how I love his smile. It just makes my day!!!! Both of my kids are just amazing!!! I feel so lucky to be a mommy!!!! I am so grateful for the good days that we have been blessed with this week. Sometimes things seem a little over whelming but when you have a couple good days it just puts everything into perspective!! If Collin doesn’t complain than why should I???? He is my hero!!!!

The kids this morning in their new church clothes that Poppie go them!!

BIG HUGS,
Julie
(mommy)

Wend. Nov. 9,2005

JUST A QUICK THANK YOU....
I want to say a HUGE thank you to Liz for sending Collin Nate's old UV protective clothing!! YEAhhhh!! I am so excited. We are also excited about the cute cloths for Regan!! Thank you!!! Also, a HUGE thank you to Mrs. Pam for Collin's beautiful fish book. I am hoping that we will be able to go the the aquarium tomorrow if Collin is feeling up to it.

I just had to brag. I finished this outfit and bow for Regan and it turned out so cute!! I am really getting into this whole "custom clothing" thing.


I hope that all of our friends are doing well. We love you!!
BIG HUGS,
Julie
(mommy)




Hi to all of our beautiful friends~
This week has been going good for us. Collin's pain has been managable and he has been in good spirits. He has been going to school and loving every second of it!! I feel so lucky that he has such an amazing teacher that believes in him. I can't stress enough how very much he LOVES school!!! It is a break and an escape. I love all of the wonderful people at his school that love him and take care of him.

Regan has been a handful these past couple of weeks. I don't know if it is just that she is getting closer to the terrible two's. I think it is becuase Collin has been so unwell and needed so much attention. We were able to spend the morning together on Monday just the two of us doing fun things. She is a sweet heart and for the most part is VERY patient with all that is going on.

Jason started his new job today!! YEAHH!! Even when it seems as if we are constantly faced with challenges it is wonderful to know that we are still blessed just as much. I am grateful to have a such love from Jesus to know that he truly knows my needs and blesses us.

I ask you all to please pray for our sweet little friend Jacob He is not doing well and can use all of your prayers PLEASE.

Thank you all for your love and support!! We love you all very much!
BIG HUGS,
Julie
(mommy)


Monday Nov. 7, 2005
I am so sorry that I have not updated in a while. It has been a hard week. Collin has not been feeling well. He had one good day all week long. His pediatrician put in a call to the pain specialist so now we just have to wait for them to call us. We need to get his pain under control. Collin, Regan, and I all have head colds!! No fun!!!! It is one big snotty mess over here!! LOL Thursday we were able to go to Disney Land which was a wonderful thing for all of us. In the morning Jason and I took Regan to Disney Land just the three of us since Collin felt up to going to school. Regan has been making it clear that she needed some attention from us. Collin hasn’t been feeling well and gets so much attention and she is so patient. Latter in the day when the sun went down we went back all four of us to ride some of the kids favorite rides!! It was fun to spend time together as a family before Jason starts his new job next week.

I have to share a sweet story. The other night Jason and I were helping a wonderful family member with something very hard. Nana was watching the kids for us. She took Collin’s glasses of when she put him in the bath. Regan heard him crying and went into check on him. She went out got his glasses and brought them to Nana letting her know that he needed them. When she put them on him he calmed down. I am constantly amazed by the love that the two of them have for each other!!!!!

I have been thinking a lot about the things that I am thankful for. Of course, the first thing on my list is my sweet family. My husband and best friend, my hero and little man, and last but not least my princess and diva!! I am so grateful for the chance to be a mommy to two amazing children. I am thankful for my faith in God and for the blessings that it brings into my life. I was talking to someone about Collin today and they asked if I was terrified of him dying. My response was of course the human nature in me wants to have him here with me forever and wants him to hang on regardless of what is thrown his way. The mother side of me is grateful that death does not have to be a bad thing. Because of my faith I know that it is not the end and that we can be together as a family again. Collin will not be in pain, he can play in the sun all day, see, hear, sing, play the piano and do all of the things that he can not do here on earth. Yes, I would miss him terribly but how could I not be grateful that he is out of pain. I am thankful for my extended family and for all of the support that they give me. I feel so lucky to have so many people constantly calling to check on Collin and the rest of us. Lastly I am so grateful for all of my wonderful friends. I have made so many wonderful friends that have supported me and my family through so much. Friends that regardless of their situation do what ever they can to help. Friends that send e-mails and care packages. You all mean so much to me. It is on my weakest and hardest days that I draw strength from each one of you and your encouraging words. I could go on forever about all of the things that I am thankful for so I will start here and continue as the month goes on.

I know that God does not give us anything that we can not handle. I am grateful that he has so much trust in me to bear so much. I am grateful for the strength and blessings that I get from each new challenge that we are faced with. Thank you all so much for your love and support through this hard journey. I will try to get around to guest books soon.
BIG HUGS,
Julie
(mommy)
Here are some pictures from our good day!! The first ones are from when we went with Regan in the morning and the other ones are from when we all went latter in the day!! Enjoy…


Regan and Pluto!!! She ran up to him and gave him BIG HUGS!!!




Regan had a blast at the play house Disney show!! She danced and put on a show!! She loved seeing Bear!!




Collin loved going on one of his favorite rides… the tram to the park!! LOL Regan loved eating a lolipop.




Collin with his Dumbo feather!!! Collin did not feel up to ridding on the ponies so daddy shoulder was a very nice fit!!!

Monday, October 31, 2005 10:49 PM CST

HAPPY HALLOWEEN!! Collin had a good day at school. It was hot and sunny. :o( Las week it was so cloudy and then today it was SOOOO sunny. We went back to Collin’s school at 1:30 for the costume parade but it was just to much even with the UV clothing on. (I made Collin’s costume out of his UV jump suite. Just in case) So, we hung out in the shade and watched all of the other kids participate. Sometimes it is so hard on him.


Hanging out in the shade!! Regan and her cousin Caleb!!

Latter in the day I had to go and buy Collin yet another pair of frames. Yes, you guessed it. He broke his glasses AGAIN!!!!! Oh, I think I need stock in this place. It was a huge head ache they didn’t have it in one city so we had to go to another . Come to find out they had been over charging me and owed me money. Then the guy was rude. He had me in tears. All I was doing was trying to get my little boy some glasses. Shoot I even got him pink ones just so that he could see!!! (Don’t worry I will exchange them when they get a boy color in LOL) Then I brought Collin home and went back to our local store to tell them what happened to me. Oh, it was a mess.

Then tonight we all went trick-or-treating!! This is the first year that we took either of the kids to homes other than family. They both had a blast. Collin loved being out and with it getting dark so fast now it was PERFECT for him. We were able to go to some homes and be back by bed time. Regan really got into it. She was running and saying More more more!!! It was funny. Everyone loved Collin’s costume. I even had one lady ask if she could take his picture.


Collin and Regan trick or treating!!!! Collin VERY excited in the car!!!!

Last night Regan had fun painting her pumpkin. Collin did not feel up to it. So, his is still waiting for him. We will have to make it a special Thanksgiving one!!


Regan and her work of art!!!! I think she got more paint on her!!! LOL


I need to ask you all to please pray for two of our VERY special friends. Sammy-Joe is still in the hospital and is not doing well. PLEASE pray for him. Also, our little buddy Christopher is not doing well. The angels have been visiting him lots. Please pray for him and his family at this very hard time.

Thank you all for your love and support!! Thank you Kyleen for the cards, stickers, and scrap booking stuff!!! The kids were excited!! We are looking forward to making something with it and hopefully making a picture for you to hang on your fridge!! We are so grateful for all of the many prayers that are said for our little man!! We love you all!!
BIG HUGS,
Julie
(mommy)

Friday Oct. 28th 2005

Friday Evening Update~~
When you get to the end of your rope, tie a knot in it and hang on. ~unknown
That is what we have done and I am so grateful to all of you that have prayed for Collin. Our prayers are being answered!!!

YEAHHHH for good days!!!!!!!! Wow, today has been a good day and I am so grateful and feel so blessed!!! Ok, our day started off with Collin waking up and feeling good. This was a good thing because today at his school they were having a fit-a-thon to raise money for the school and to end Red Ribbon week. Collin raised $105.00 from family members!! Thank you!!! Of course I insisted that the Special day classes were included so they had a very special obstacle course set up for Collin and his class mates.

Collin walked down three hall ways to get to the P.E. room….then to the obstacle course!

Down the wedge… through the tunnel…..

Over the bolsters….. Up and down over the swing…..

Up and down the stairs…. Across the room and wow he finished!!!

It was so great seeing him strong enough to do all of this fun stuff. He grunted and worked so hard to get through it!!! HE IS MY HERO!!!!!!!!!!! Daddy, Nana, Regan and I went to cheer him and his classmates on!! We are so proud of all of them!!!!

Latter in the afternoon I took Collin to his neurologist. When I told her what happened with the nurse she was LIVID!!!! She made it very clear that, that is not how she ran her office and that it would NEVER happen again. She also gave me her direct e-mail so that if I ever had a hard time getting a hold of her I could e-mail her. She is wonderful!!!! We have been with her for over four years and she is great!!! She agreed that what was going on with Collin was very serious. She wanted to start Collin on Trileptal before even getting the EEG. I have to wait until Monday to get the EEG scheduled since that part of the hospital had already closed for the weekend. I am so grateful to have such wonderful people in our lives to help us with our sweet little man. My prayers were answered and I can breath a little easier tonight. Of course I will still be worried until the results come back.

In the evening after we go the kids ready for bed there was a knock at the door. It was our UPS man. Not only did he have Collin’s shipment of diapers but he had a VERY nice surprise from our very special Wisconsin Warrior friend Ben. His beautiful mother Michelle told Ben’s 1st grade class all about Collin and showed them pictures. Then the class drew him pictures with special messages, a VERY cool pumpkin that they all signed, and some bubbles!!!! THANK YOU so much! We are excited to make some fun things to send back to the class from California!! Thank you Michelle for thinking of Collin and making other children aware of how special children like Collin are and how they want friends just like everyone else. If we do not start while they are young then they will never know.

What a cool pumpkin!!!! SOOOO many pictures to look at!!!


Collin and daddy looking at pictures. Regan found one she really liked!!

I am sorry that we have not signed guest books in a bit. Things have been so crazy. I am hoping that it will settle down. I want you to know that we go and check on all of you EVERY day though and we pray for you EVERY night!!!! We love you so much!!! Let me end tonight by saying that I see many more trials ahead but I also see many more good days!!!
It takes both rain and sunshine to make a rainbow~ Unknown

BIG HUGS,
Julie
(mommy)

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UPDATE~ I was able to get Collin into the dr. today at 2:00pm. I will let you know what happens. That ol' mommy is pretty stuborn!!! Also, PLEASE pray for our friends. Sammy-Joe is in the hospital. I called last night and spoke with Thomas. They don't know what is going on. He will most likely be in there all weekend. Please keep him in your prayers. Sammy-Joe also has TTD and is our very special friend!! Our other friend that is in need of prayers is our very special friend Christopher he has been sent home where he has been with his mommy and sister for a while. He is not doing good. Christopher and all of his family need your prayers at this time. Thank you!
BIG HUGS,
Julie
(mommy)




I am happy to update that we had a good day yesterday!! We were in need of a good day. Collin got a good nights sleep Tuesday night. He cuddled up with mommy and daddy in bed and stayed with us all night. We were both more than happy to share our bed if it meant Collin got a good nights sleep. Collin woke up in a good mood and he went to school. It has been beautiful and cloudy all week long!!! Thank you Kayla for sending the clouds from Scotland!! After I took Collin to school I went to Great Grandma Jo’s house to clean. You see, grandma Jo can not bend over to vacuum or mop any longer. So, I go over once a month.. or so to help her out. Regan stayed with Nana and had fun playing with her. When I got back I had a wonderful surprise. My sister (Nancy) and my mom had sent me a candy boutique. The not attached simply said…. SMILE and that is just what it made me do.. Smile!! Thank you so much! I needed some cheering up after such a hard week… month.

It was as big as Regan!!!!

Collin had a good day at school. He was very low key. When we got home he rested most of the afternoon. That is a good thing because last night our Church was having a Trunk or Treat Halloween party. They had chili cook off, deserts, fun things for the kids to do, and then trunk or treat. What is trunk or treat you ask. Well everyone decorates the trunks of their cars and then all of the children go around the parking lot of the church “ trunk or treating” This is a safe way trick or treat if parents do not feel comfortable with their children going door to door. Both of the kids had a blast!! We all needed to have a good time!!! Regan was a princess (of course!!) Collin was a scuba diver. His costume was a HUGE hit!!! I have to say it turned out pretty good if I do say so myself.




I have to say that the high light of my night was having a fellow young mom, who does not know all that we have been through this past month, stop me and say “ You have to be the best mom I have ever seen.” Of course I was grateful but embarrassed. I said “oh, so you liked Collin’s costume” Her response was “Yes, I loved his costume but that is not what I meant. You always go above and beyond.” You have no idea how much it meant to hear that. This past month I have felt like I have just been walking in mud… not getting much done and so worried about things.

I wish that I could say that I was lucky enough to have two good days in a row but for some reason they are seldom at our house. Collin slept ok. He kept waking up in pain from his legs. I think he might have walked to much at the party last night in his gate trainer. He had a good day at school though…. Another low key not quit himself kind of day.

Ok, so here is were it starts to get bad. I get a message from a nurse at Collin’s Neurologist’s office. I called back and she annoyed me from the beginning. You could tell that she hadn’t even listened to my messages well. She was trying to call our old phone number (I left our new one on the message) she said oh yes Collin has been throwing up how is. NO NO that is not all I said. … I said that Collin had vomited then passed out and the dr.’s think he is having seizures. So, I finally said will you please just have the dr. call me. She told me no the dr. doesn’t make phone calls. WHAT???? I know his dr. and she would call me back… so she obviously did not pass on my message. Then she said well if you have a question then you can ask me or I will give it to the dr. and then I will call you back. GRRRRR….. Ok, fine so I told her AGAIN what was going on and asked her if she thought the dr. would just want to do tests of would she wan to see him. I also explained that we were just in there 2 ½ weeks ago. She told me that yes, the dr. would want to see him. Ok, then can you make an appointment .. No I will transfer you. Now I am on the phone with the front desk they said that they would get him in as soon as possible. Nov. 21st!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Yes, I couldn’t believe it myself. Then I said that I really would like to leave a message for the dr. because that just seemed to far away. She transferred me back to the nurse who continued to be rude. So, I finally said I am getting frustrated so I am going to hang up now. I called Collin’s pediatrician that we saw on Tuesday and left him a message telling him of the problems that I was having and if he could help. I am praying that he will be able to. I will not wait an entire month to have him seen. I will just show up and camp out in the office if I have to but I do not want my son to continue to have this happen to him!!!!!!!!!!!!!

That on top of every day life stresses, money, house work, ect. Has had me in tears a good part of the day. I also had something else happen .. I will share it at another time. Collin is pulling me away from the computer. He is needing some hugs. Thank you to everyone that has been praying for my little man. Thank you for all of the sweet e-mails, and for the happy mail!!
BIG HUGS,
Julie
(mommy)
Please pray for our dear friend Maria (Sammy-Joe’s mom) she is in need of your love and support. Please also pray for our sweet little friend Kari. She is having surgery tomorrow.

Sunday Oct. 23rd, 2005

UPDATE:Things have been so scary around here. So, let me explain what is going on with Collin. He has been having these episodes where he vomits and then falls asleep or passes out. Yesterday he had a great day at school and was a little whiny when he got home so we tried to stay busy doing things… buying him new glasses (YES, more glasses this is his third pair since July) because of his fall on Friday. Then when we got home and all of a sudden he just started vomiting. I took him in the bathroom to give him a bath. As I was taking his clothes off , I was literally pulling his shirt over his head, and his eyes rolled in the back of his head and he was out. He slept for about thirty minutes in my arms and then he woke up in SOOO much pain. He continued to vomit all night and cried tears from the pain.

This is the worst that it has ever been and Jason and I both were in tears just scared for out little man. We knew that the results from the MRI were not good but wow this just seemed very quick for other things to be showing up. I had always just thought that it was from to much sun but we knew that something was not right. It has been happening to frequently and to constantly to not be something serious.

After a very long night I took him into the doctor today. Of course the doctor was stumped. Collin looks perfect today. Ears.. Good… throat… good… no fever…. No more vomiting. So the concern now is that Collin is having serious seizures. Yes, very scary. I talked to the NIH back east and I was told that yes TTD patient do tend to have seizures. They do not know of any having this kind of seizures before. When I told them what was going on they agreed that they think that it is seizures and that he needs an EEG ASAP to get it under control. I have put in a call to his neurologist and am waiting for a call back. Also, we are getting hooked up with a pain specialist. At this point in time keeping him comfortable is the most important thing.

Thank you all so much for your love and prayers it means so much to me. I am grateful to have such a wonderful support system that I can reach out to in times of worry and fear. Please continue to pray for my little man and that the doctors can figure out what is going on. It is taking a lot out of him and it is so hard to watch.
BIG HUGS,
Julie
(mommy)




PLEASE pray for my baby. Tonight has been very hard and he is not doing well. We don't know what to do... the doctors don't know what to do. I wan't go into all of the details but it has been a very hard night. Jason and I have been in tears all evening. PLEASE pray fro my little man to be comfortable tonight. Thank you
Julie






Thank you all for your love and support. It has been a hard week/weekend. I am grateful for all of your prayers and kind words. It truly means so much. My weekends are usually the time that I rest and recover from my physically demanding week. Well, since Jason was down all weekend I did not get that and wow am I feeling it. Collin has not slept in days. So, of course I have been up with him and I have not had my side kick to give me breaks. Last night I just ended up sleeping in Collin’s bed because I was up with him so much and then of course Regan woke up at 5:30 am.

We did have some fun yesterday. We woke up to a beautiful cloudy and cool day!! YEAHHH for cloudy days. In the morning Grandpa, Nana, and I took the kids to the pumpkin patch. We had lots of fun. The best part was seeing Collin strong enough to go on rides by himself. In the past he has not been strong enough to sit up with out Jason or I on a ride with him. It was so fun to see Collin and Regan sitting side by side enjoying the rides together!!! Here are some pictures from the pumpkin patch.

They both LOVED ridding the rides. I think that the cars were both of their favorites!!

Regan rode the pony all by herself!! Collin did not feel up to it.

Collin and Regan in the petting Zoo. Collin loved touching the animals. Regan was a little scared about it.

I think I’ll take this one!

Latter Collin and I went to the store while Regan was sleeping to get some things for his Halloween costume. It is going to be great!! I am so excited!! I found a cute idea in a magazine so I am going to make Collin a scuba diver and wrap his walker in blue fabric and put fish on it!! Regan is going to be a princess!! On Wednesday our church is having a trunk or treat so I have to hurry up and get it done!!

Latter in the day we went for a walk since it was still very cloudy and Collin was going crazy not being able to play with his daddy. The weekends are their buddy time and Collin hated not being able to spend time with his very best buddy in the world!!

By the evening the effects from being out started to set in. He just started getting crabby and itchy. Even though there wasn’t any sun out I think we might have done to much. It is so hard to know…do we go and play and make him happy and then pay for it latter … or keep him trapped inside and make him miserable all of the time.

Jason is feeling better today and Collin is getting some much needed cuddle time with is daddy!! I am exhausted and I am going to TRY to get a nap. LOL Collin’s head is looking better but I guess this will just put off his pictures for a couple of weeks!! LOL Thank you all of your love and support!! I want to end today with a great quote that Michelle sent me.
"Don't ask for a light load, but rather ask for a strong back." ~ unknown



BIG HUGS,
Julie
(mommy)




My update today will be short. Today has been a very long and hard day. Well, it all started this morning. I was taking Collin into school in his wagon. I had to stop and give something to another parent in front of his school. He was not happy about it. I turned and he was leaning out of the side and then he just flipped over and fell out on to the side walk. Oh, it was so awful. Another parent saw and ran over. I scooped up Collin and the parent pulled Regan in the wagon. I took Collin into the nurses office and we iced him down and made sure that he was ok. Boy does it look bad and he was in so much pain. So, then I took him home, gave him pain meds, and cuddled him. He fell asleep shortly after which scared me. I just held him in my arms for an hour and watched him carefully.

Then I had to go to the doctor for myself. I did not want to leave Collin but Jason came home and had things under control. I know that I needed to go but have been putting it off. Not bad news not good news. I just need more tests.

After getting home from the doctor I took Jason to the doctor for him to have his procedure to make our decision about no more children permanent. (I am trying not to get to descriptive but you know what I am talking about.) He is doing well. It was just hard knowing that we are officially done have our “own” children. Some day though we might find a beautiful child that needs us badly. We both feel very good about our decision it is just the letting go part.

So, needless to say the wagon is being thrown out. I will get the kids a new one with seat belts for Christmas. I have to schedule myself another appt. and I have to take care of all three of my babies this weekend! LOL I feel like I can not even think straight

I do want to say a HUGE thank you to Mary Beth for Collin’s belt. We got it yesterday and it fits him perfect!! I will send you pictures. Also, thank you to all of my wonderful friends that have been sending such sweet e-mail to me. Thank you to all of you that send Collin happy mail. It brightens all of our days!! Thank you for your love and support and most of all for your prayers.

BIG HUGS,
Julie







HAPPY BIRTHDAY PAW!!!!





Do you ever wonder why some thing happen to certain people and not to others? I think that it is only natural to ask yourself that question especially when you are in situations like ours. I know that I don’t completely understand it but I do know that God does not give you anything that you can not handle. I see Collin and all that he is faced with on a daily basis and I think that he must have been an amazing person before he came down here to earth. To look down and see our family and know that he would be faced with all of the challenges that he has but still choose to come down here and be part of our family. I thank God every day for giving me two perfect children. Yes, Collin might not be the “normal” perfect but he is my perfect. They both have so many wonderful qualities and constantly amaze me.

The other day at school a parent made a comment that upset me so much. She is starting a new program and decided to leave the special ed. out. I asked her why she choose to do that. Her response was because she just didn’t think that they could do it. The program is about character building… go figure. I went on to explain to her that many of these children are faced with these character building decisions on a daily basis. This month happens to be courage. Most of these children (including Collin) are in and out of the hospital all of the time, getting poked and prodded all of the time. When they fall while they are trying to walk, they get up and do it again. If they can not walk and they try to hold their head up, or even smile when it hurts so bad. This is all courage. It might not be what you typically think of as courage but they are some of the most courageous people that I know!! Shoot… Collin is my hero. Then the mother said oh ok well it will work for this month but others just wont work. I asked her why not. She replied that one month there is citizenship and well…. I quickly replied don’t they participate in the flag ceremony. Can’t they hold a flag. Why can’t they be good examples of citizenship. By this point I was so frustrated that I just wanted to leave before I blew up!! I have learned to walk away in certain situations rather than yell. LOL Anyways, the woman said other things which were even worse and I was so mad at her but this is why I am writing this. I am not mad at her an longer. I truly feel sorry for her for not seeing what I can see. I feel very blessed to be able to see such wonderful things in such special packaging.

I guess that this is one of my most important jobs here… to help people understand. To try and open their eyes to what beauty and endless possibilities lie in such amazing children. No one should feel burdened by them but lucky to have met them and experienced the love and beauty that they bring into every aspect of life. I feel lucky to be Collin’s mother and for the daily life lessons that he teaches me. I know that I am a better mother, Jason is a better father, and Regan is a better sister because we see all that Collin has to go through just to do “normal” things. The even more amazing thing is that he does it with a smile.

Ok, so enough of that. Collin is doing ok. Not good not to bad. He actually slept through the night the other night. I was so worried that got up to make sure that he was breathing. Of course, the night that I could have slept all night I was up worrying. It has been wonderful and cloudy. With those beautiful clouds came rain. So, Collin skin has been fine but his arthritis has been bothering him and he has been in a lot of pain. They want Collin to go in for a dexa scan. Has anyone had their child have one? This is something new. Other than that I am trying to keep this week as low key as possible. I have not been feeling so well and the doc. Wants me to go in on Friday. (Maria it is scary how much our lives are alike.) Also, Jason has an appointment on Friday. As much as we would love a huge family we feel very good with the two beautiful children that we have. So, after much prayer and talking we are making it permanent with surgery so that we do not have any more children. We have a feeling that we might adopt some day. I just don’t know if I could watch another child go through what Collin is going through. (There is a 25 percent chance that any of our children would have TTD.) Anyways, I have a feeling that it is going to be a hard day.

Thank you so much for stopping in to check on our little man. I am going to end today with some pictures of Regan. I took her to get her pictures done yesterday. I decided that I would take the kids one at a time this time to hopefully get better pictures. I will take Collin next week. (His school pictures were awful!) Regan was a ham like always and they turned out great!

BIG HUGS,
Julie
(mommy)
Yes, I did make this outfit and I have to say that I think it is one of my favorites!!

Friday, October 14, 2005 10:45 PM CDT

This will be a quick update about the kids. Yesterday I wanted to do something fun with the kids. This past couple of weeks have been filled with the hospital, stress, and doctors offices. So, we all needed some fun time together. I called up Great Grandma Jo and we went to the Aquarium. It was fun to see the kids so excited and having fun. We could not go outside and see the birds because it was WAY to sunny. I think that Great Grandma Jo was more bummed than the kids. LOL

I had to show this picture because this is SOOO Regan!! My little Diva!!

This was very cute. Regan was sitting in Collin’s lap with her feet up on the fish tank and Collin was just holding on to her!!!
Latter in the evening when it got dark we went out to play. Collin was in his gait trainer and Regan found a great way to give Collin a good work out. Both of the kids were having fun!

If you look at Collin’s face in the first one you can tell that he is starting to get tired!! I had to pull Regan off and she was soo mad. I have a feeling that this will be a new fun game for the two of them.

Today Jason and I went to Universal Studios in Hollywood. Tomorrow is our six year anniversary. So, Nana and Grandpa watched the kids all day so that we could get away and do something fun. I haven’t ever been and it is close by. With Collin not feeling well we can not go to far and Nana will not ever watch Collin over night again. She did that once and broke down in tears. (It is hard!!) So, we went to Universal and had a GREAT time. We can not take the kids there (yet) so it was a perfect fun thing for Jason and I to do just the two of us!! I didn’t take my camera believe it or not!! I drive Jason crazy with it at times so I promised to leave it at home. LOL


Dear Jason~
I just want you to know how very much I love you! You are my best friend and have been by my side every step of the way with every challenge that has been thrown at us in our short six years of marriage. I know that it seems like we are handed so many trials, challenges, and hardships… Well, yes I guess we are but it is only because God knows that we make such a wonderful team together and that we can get through anything. I love you dearly and am so grateful that you swept me off my feet and danced your way into my heart that first night!! You are an amazing man and although we have our hard times there is not anyone in the world that I would rather be with! You are such a great dad. Hearing you introduce yourself at the PTA meeting by saying my name is Jason and I have the two best kids in the world says it all! Collin and Regan adore you and cherish each second that they get with you.
Thank you for making my dream of being a mother come true. Thank you for wiping away my tears, and holding me when it gets so hard. Thank you for forgiving me on my sleep deprived days when I am not so nice. Thank you most of all for loving me and our family!! You mean the world to me!! I love you! Here’s to many more years to come!!
Love for all eternity,
Julie

Wenesday, October 12

Thank you all for your love, prayers, and sweet words. It truly picks me up on our hard days. Collin is feeling a little better. Yesterday his smile started to return!! Oh, how I love that smile and long for it when he is not well. I can not even describe in words how much it means to me to see my little man smile that big toothy smile. To see him happy and not in (to much) pain. Poor little Regan is doing well also. I know that this will not be the last of her falls. She is her mother’s daughter and I know that she will try to do anything that she can.

So, I got Collin’s bone scan results back… not so good. His bone age is 2 ½ years behind. They wan to start him on treatment right away so that he does not get an fractures. The doctor wants to run one more test before starting treatment. He also mentioned getting him on two different meds. Because it is so severe. Bummer! Not what I wanted to hear after this past week!!!

I need to thank my sweet mother-in -law for all of the love, support, and help she gives me. This weekend was so hard on all of us but she stepped right in and took care of Regan so that we could focus on Collin. She always does this with out being asked. I can’t even begin to explain how grateful I am for her and my father -in-law for all that they have done for our little family. They have opened their home to us and help us in the hardest times. THANK YOU just doesn’t seem to even begin to describe how I feel.

Anyways, yesterday my mother-in-law watched Collin for me and forced me to go with Regan to her teeny tumbler class. In the morning. Collin was still not well and I did not want to take him to school. I asked her to take Regan so that she could have some fun. Well, she knew that I needed some fun also. She knew that I needed some time with Regan since I had been focusing so much on Collin. It was truly nice to get to do that and it means so much!!!! She loves it and I have a feeling that I have a future gymnast on my hands!


In the afternoon Collin was feeling much better and was playing with his new computer so much!! YEAH!! I knew that he would love it when he was feeling better!!

Today Collin woke up in a great mood and we all got some sleep last night. I took him to school for an hour before I took him to the urologist. Nana watched Regan for me. Ok, where do I begin with this appointment. Collin has nine doctors and I have been doing this for over five years and I have NEVER been treated the way that I was today! I was so furious!! I made his appointment yesterday for today. Well, we got there signed in and then sat and waited. After 30 minutes went by I went up and asked if they wanted my co-pay. She didn’t even look at the list. They did not have Collin on the appointments, they did not have his file at this office and the girl was VERY rude!!! After waiting for an Hour I sat up there asking if I needed to reschedule because I could not sit around all day because their office made a mistake. She told me oh no he will be next. Then the nurse took some one else in front of him!!! By this time it had been an hour and a half!!! I saw the nurse and asked her when she was going to get Collin back. She then in a loud voice told me that all of the rooms were filled and she couldn’t just kick someone out for my kid!!! I then told her that my appt. was at 10:00 and it was now11:30. She was so rude!! I just wanted to yell at her! By this time Collin is crying because he is hungry. We finally get into a room and the doctor came in. (This is what really gets me!) He looked at Collins chart and said I don’t know why they sent you here everything looks fine. He did not even look at Collin. Check his testes, genitalia, or anything!!!!! He hasn’t seen Collin since his last surgery two years ago and he didn’t even look at him!!!!!!!!!!!!!!!! He spent two minutes with us and then walked out!! I was in tears I was so mad!!! I called the insurance and told them not to pay them because they did not provide a service at all. I am also going to write a letter to the doctor and NEVER go back there again!!

After I finally calmed down the kids and I had a good afternoon. Collin was feeling well and Regan was being her sweet self to him. She has been so loving!
Regan taking care of Collin!!

We got Collin’s loner gait trainer today! It’s a long story but they haven’t even ordered his gait trainer. Someone made a mistake so they gave us a loner. He was so happy to have it!! I love that smile!

I love that smile!!

Great Grandma Jo made Regan this poncho!! It turned out so cute! Thank you!

Thank you again for all of your love and support!

To my sweet husband… Happy 31st Birthday!! I love you so much and am so grateful to have you in my life!!

BIG HUGS,
Julie
(mommy)




~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Do you ever have those days when it feels like when it rains it pours. Well, today was that day for us. Let me back track to yesterday. Collin had a very hard night Friday night. He did not much sleep at all but it was different than the usual sleepless night. He was screaming so bad…. Not just crying but screaming. Saturday we woke up and he was still not feeling great. It was his Make A Wish day. They came over and set up the computer for Collin. THANK YOU SO MUCH!!! He was blessed with three beautiful angels that came and brought him his computer. They also brought him a gift card so that when he was feeling well he could go shopping and buy anything that he wanted. Let me say it again… thank you Make A Wish (Kristen and Kathie) Lately we have had so many bad days it is nice to know that someone truly cares about your child and wants to make them happy. You will forever be in our hearts!!!

Grandpa, Regan and one of Collin’s Angels put his computer together.

Collin felt so bad that he slept through a good bit of it!!

I am sure that both of them will have lots of fun!!

A HUGE thank you to Collin’s Angels!!

Collin crashed by 6:00pm. I am sure that he will be so happy to have his computer when he feels well.

Ok, so to today. Collin had another awful night and continued to run a fever with no other symptoms. So, I ended up taking Collin to the hospital this morning. They were completely stumped. His urine, blood, and body looked Ok. So, what was going on with him???? They think that it might be his kidneys. Jason showed up after about four hours of being their by myself to give me a break. He had to wait for Nana to get there to watch Regan. They said that their wasn’t anything that they could do so they sent us home. I will be taking him to his doctors tomorrow. Please pray that what ever is going on with my baby is not to serious. I am so worried. He has such a high tolerance for pain and he is just in tears all of the time.

I took these with my phone… so they are not very good.

So, yes our wonderful day continued. I was outside with the kids trying to cheer Collin up because it got dark early tonight. I turned my back and Regan tried to climb up on the picnic bench by herself and fell off. She hit her head VERY hard on the cement. I had Collin in one hand and trying to get Regan in the other hand. Grandpa came over and got Collin and as soon as I turned Regan around I saw this HUGE goose egg on her head with blood. It looked awful. We thought that we were going to have to take her to the hospital. Poor little thing was just miserable. There was no comforting her.

Collin got this doggie at the hospital today from the star light people. He gave it to Regan when we got home!! She will not let go of it!!

It is now 7:30pm and both of the kids are in bed and I am tired. I am going to try to rest before my long night starts. PLEASE PLEASE pray for my little family. I have to admit that it is getting to be discouraging. We have had a very hard week with the MRI, Collin not feeling well, and now all of this.

I don’t want to end on a negative so I will just say this. I am VERY grateful for my sleepless nights. A sweet friend of mine (thank you Deb) sweetly reminded me how lucky I am to have sleepless nights. You see her beautiful little girl was in the hospital a long time before she went to Heaven. She spent lots of sleepless nights with her daughter. She told me that she would give anything to have a sleepless night again. So, I will hug tight to both of them tonight and most likely shed a few more tears but I will be grateful for every single second that I am awake tonight!! (I love you Deb!!)

BIG HUGS,
Julie
(mommy)

Wednesday, October 5, 2005 11:31 PM CDT

Today has been a day of highs and lows. My mom came to visit us from Apple Valley today (about an hour and a half away.) It was so nice to see her and spend time with her. Regan and I took Collin to school before my mom got here. He needed to go for his therapies. So, my mom, Regan and I did what any girls would do… we went shopping at the mall. It was fun. Regan was a hoot. She kept holding up cloths to herself and showing us. Then we grabbed some lunch and then it was time to get Collin.

LOTS OF KISSES FOR POPPY!!


LOTS OF HUGS TO!!!

I put Regan down for a nap and Nana kept an eye on her and my mom (Poppy) took Collin to his neurology appointment. I know what fun.. Regan got to go to the mall and a dr. apt. for Collin. Collin was in a great mood. Poppy cuddled and played with Collin most of the time which was a good thing. The dr. had mentioned Collin’s MRI from April. I told her that I had phoned for the results and her nurse had told me that if something was wrong the dr. would have called me so no news was good news. Well, she was fuming when she got Collin’s chart with out the results in it. Then she looked over the MRI results and no… it was not good news.

In the MRI results under the dr. impression it reads: Diffuse nonspecific white matter T@ hyper intensities, with involvement of the sub cortical U fivers. The finding is more apparent compare to prior study. Differential diagnosis includes dysmyelinating process, congenital metabolic and mitochondria disorders such as met achromatic leukodystrophy. Clinical correlation is suggested.

Ok, so here are my frustrations and thoughts about this. First off of course I am upset that I am just now seeing this but that is the staff’s fault not the Doctors. Collin’s doctor is very sweet and wonderful. My second frustration is with the hospital that did the MRI. In the impressions the doctor says “Clinical correlation is suggested” this never happened. Collin’s neurologist wasn’t ever contacted. Thirdly I was upset because this is not what I wanted to hear. Rather than making progress it has gotten worse. Obviously the “damage” is not affecting his mobility because he is making strides. How ever I do feel that it is effecting his communication skills. He once had a vocabulary of about five to six words. It is now maybe one on a good day. This could also be what is causing the hearing loss. (so, of course affection communication) I pray that this does not continue to affect any more areas of his life. There isn’t anything that can be done. It is just the Beast known as TTD affecting one more area of my beautiful son’s life. I have not given up on a miracle. I still pray that some day my son will talk to me.

After the doctor’s appointment we went home and got Regan than Poppy, Collin, Regan and I went to the store. Poppy wanted to pick up some of the items for Collin’s classroom off of his school list. It started out ok but then it just got scary. Collin was excited to be at the Mall. He did not like being “stuck” in Target but he was happy to be out. When we were shopping he was acting irritable but I though that it was just because he wanted to go out into the mall. Well, after a bit of shopping my mom grabbed me and pulled me over to Collin (she was pushing him and I was pushing Regan.) He was heaving. I quickly put my hands in front of his mouth and caught …yes vomit. It was not much and seemed to just be reflux. So, we continued. About five minutes latter he began again and it was more that my two little hands could handle. It went on him and me. Poor thing…. I stripped him down in the store to get the puke clothing off of him. We grabbed a pair of pants off of the wrack and put them on him so that he would have coverage when we went outside. We took the tag off so that we could pay for them. Well, at this point I have Collin on my shoulder while pushing Regan and my mom is pushing her cart. Then before we could get to elevator to go down …. Yep… he started vomiting again. At this point I have fun out of baby wipes and anything else to help me so I just leaned him over and let him throw up on the store floor. My mom was running around trying to find something or someone to help. BIG MESS….. And then we left. We made it out the door and home with out any other messes. When we got home I took Collin out of the van and he was just crying so hard in pain. He ended up just falling asleep on my shoulder. Oh, I hate it when he gets like this. I am not sure what it was today. It could have been one of several things… the sun… the heat… or just exestuation. What makes it so bad was that he was having such a good day… such a good week!!! I am grateful that my mom was with me today at the dr.s apt. and at the store. I don’t know what I would have done with out her.

Collin and Regan are now sleeping, my mom is home and I need to get some things done around the house. Thank you so much for checking on my little man!
BIG HUGS,
Julie
(mommy)

Monday Oct. 3rd

I want to start off today by telling my niece and nephew how proud of them I am!!! Hunter entered into the calf showing contest at their local fair for the very first time and he took home first place!!! Way to go Hunter!! He borrowed someone else’s cow and he did a great job!!! Ok, so I have to tell a cute Hunter story. Collin can not talk and he mostly babbles. One day when we were visiting with them Hunter looked at me as sweet as can be as asked “ Does Collin speak Spanish?” It was so cute!! I said no he speaks collinese! LOL

Hunter my little cowboy!!!!!!

Now, on to McKenzie… she has only been playing the violin for a month. She entered the fiddle contest and won 6th place and got five dollars!! I am to proud of you sweetie!!!

Speaking of McKenzie… I have a favorite story that I will share. Three years ago Mark, Rachelle, and the kids came out to visit and go to Disney Land. We were going to the front of the line and someone was giving us a hard time and saying the line is the other way. My sweet little niece looked at the person and said.. “EXCUSE ME BUT WE ARE HANDICAP!!!!!!!!!!!!!!” It was heart warming to see her sticking up for her little cousin. Although she didn’t completely understand everything about Collin she did understand that he was handicap and that meant that he was “special”!!!!

We had fun Saturday morning but in the evening Collin began to hurt. It carried over into Sunday. We went to our friends house for dinner. Collin cried the entire time. We had to cut it short because he was in so much pain.

Last night Collin had another hard night. I was not sure if I was going to take him to school today but then he woke up in a great mood and wanted so badly to go. I took Collin to school and then Regan and I went for our first teeny tumblers class. It was so much fun!!! Regan was the oldest child in the class. So, she ran the place! LOL She was helping the teacher and dancing around and just having a blast!! It was so great to see her having fun and getting to enjoy some kid stuff. I forgot my camera. I will bring it next week. She was a hoot!

Collin had an appointment with the doctor at 4:00 today. It went pretty well. Collin was in a very silly mood this afternoon. I love it when he is like that. He just wanted to play tickle monster and be silly!! We were able to get outside for a little bit tonight. YEAHHH!!!! I got a phone call today from Collin’s MAW granter she said that the computer was in and that they wanted to bring it on Saturday!! That will be lots of fun!!

I love that smile!!!

Regan in her Halloween outfit mommy made!


Mommy’s little helper!
Thank you all so much for your love and support. I have meet so many wonderful people through this caring bridge family!!! I feel very lucky to know that so many of you are praying for my little man, sending him happy mail, and supporting me through the hard days!! THANK YOU!! I am sorry that I have not been able to sign guest books or send happy mail as often as I would like!! Things have been crazy but they will settle down… even if only for a minute! LOL

I feel blessed for every day that I have with my little man! For every second that he fights the odds and proves the doctors wrong!! For every kiss, every cuddle and every high five!! I am even thankful for his temper tantrums. Yes, you read that right. I never thought that I would see the day that he would be throwing a fit to get his way!! I am grateful for sleepless nights. I have learned not to complain.. Because there are mothers that do not have their little ones here with them to fight with and cuddle at night. I feel blessed to have such a special angel on earth to teach me and make me a better person. In our dark little world he is our ray of sunshine!

I feel so blessed to have an amazing little girl that is always challenging me!! For every kiss that she gives to me or to her hurting brother. I feel so grateful for the overwhelming peace that was sent to me when we were struggling with the decision of having another child. That could truly have only come from one person… My savior Jesus Christ. I can not imagine my life with out her. I am grateful for every cheesy finger print, every smile, every dance that she puts on, and for all of the cuddles. Her love for her brother is endless. She is an amazing little girl that makes our family feel complete!! I feel blessed for every day that I get with her as well!!

BIG HUGS,
Julie
(mommy)



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Saturday Oct. 1st
THANK YOU ALL FOR YOUR SUPPORT AND PRAYERS!! We had a much needed good day yesterday. After a very long and hard week Collin finally had a good day!!!! He went to school and was a good boy. Latter in the afternoon Nana and Grandpa wanted to take the kids over to get their pictures taken on the pony!! Regan was first and wow was she a ham! She was posing for the camera and was saying Yee Haw Yee haw! It was very cute



Then it was Collin’s turn. Well, it did not goes as well as it did with Regan. It was outside and even though we were under a tent it was to much for him. So, we only got a couple of pictures taken. I didn’t even try to put the fun cowboy clothing on him. I knew that he would just not have it.


We came home from that and I let Collin rest. Then we went to…. Yes you guessed it… Disney Land!!! Yeah!!!! It got cloudy and just beautiful for us to be out!!! We haven’t been in a couple of weeks and both of the kids were so happy to be there!!

Regan got a Disney sucker. She has been wanting one for so long and mommy finally gave in! YUMMM!


Daddy and Collin on Dumbo!!


Mommy and Regan in front of small world!! One of the kids favorite rides!!


Collin likes this kind of pony so much more!! LOL

Today we woke up a beautiful cloudy day!! It was a perfect morning for a walk!! I loaded the kids up and we went on a walk down to the park! They were both very happy to be out. They needed it!








When we got home from the park Collin has some happy mail waiting for him!! WOW Mrs. Pam you are the best!!!! Collin loves his pumpkin pillow case!! It is so cute and it came with a note telling him to have boo tiful dreams!! How cute is that!

Collin got his radio and cuddled up with his new pillow!
Thank you Mrs. Pam!!!!

We hope and pray that all of our friends are doing well! If you have a chance please stop by our very good friend Lily’s Page. It was her birthday yesterday and she wasn’t even able to be at home to celebrate because of the hurricane! We love you Lily!!!! Happy 3rd Birthday!!

BIG HUGS,
Julie
(mommy)

Wednesday, September 28, 2005 10:08 PM CDT

I have not written in a while because thing have been very hard around here this week. Collin has been miserable. I don’t know what is going on but I am getting worried. Sunday Collin got lots of cuddles from daddy while he was home. Also, daddy had to take him to get his glasses fixed because he broke them AGAIN. While the boys were cuddling Regan and I got to do a very fun for the first time! We made chocolate chip cookies together. It was so fun to watch her. She loved cracking the eggs into the bowl. When we cracked them she kept saying more.. More.. More. Then when it was time to put the chocolate chips in she did it one at a time. After she tasted one she started taking them out one at a time! LOL



Monday I took Collin to the hospital for his x-rays and lab work. Let me tell you, Collin is the most amazing person that I know!!! I am constantly amazed at what he teaches me by example. When we were there he was being poked, held, down, and hurt. He did not understand why they were hurting him all he knew was that he didn’t like it. When it was time to leave he gave them all high fives and kisses. I wish that I was as quick to forgive as he is. It is amazing to watch. When someone hurts us do we quickly forgive them and “give them high fives and kisses?” Collin is the most Christ like person that I know. I know that he is truly an angel here on earth. I have not gotten the results back yet. I will post them when I get them.

Tuesday I had a Cookie Lee party in the morning with some other moms. If you don’t know what cookie Lee is it is jewelry. It was lots of fun. Then I had to get Collin and he was just not feeling well. The rest of the day he stayed that way. Last night was sooo hard. I can’t even begin to describe how many emotions I went through last night. Collin went to bed at 7:00pm like usual. He woke up at 3:00am screaming in pain. He woke up Regan when he did this. So, Jason took Collin out into the living room to cuddle and I cuddled Regan trying to get her back to sleep. It is was so heart breaking. Regan would here Collin crying and would reach for the door and just call out BUBBA!! Oh, it just broke my heart. She was so worried about him. By 5:00am neither of them were asleep and Jason was getting worn out fighting with Collin. So, I laid Regan back in her crib and let her fuss for a bit. I went out and got Collin and just cuddled him. I could tell that he hurt so bad. I gave him more meds. Then I just sang to him and talked to him. I just started telling him how much his Heavenly Father loves him and that some day he will not be in pain. Some day in Heaven he wont have to hurt or feel bad. I told him that he will be able to run and dance. (He loves to have me pick him up and dance with him.) That he can play in the sunshine, play that piano, and sing mommy songs. Of course by this time I had tears just streaming down my face. It worked though. By walking around with him and telling him sweet things about Heaven and a pain free life he fell asleep.

At about 5:45 he was crying again. I crawled in bed with him and we just cuddled. At 6:45 he was ready to get up. I have noticed that a lot of the time he would just rather get up and play and stay busy so that he doesn’t have to think about it. So, needless to say I was VERY tired. I had been up since 3:00am. Luckily my wonderful mother-in-law watched the kids for a bit this afternoon so that I could take a nap. I thought that I was just going to fall over. THANK YOU MOM!!!!

I took him to the doctor this afternoon for treatment. He was not happy one bit. That was the last place that he wanted to be. He is normally very happy to say hi and make the rounds but not today. When Collin and I got home we picked up Jason and Regan and went over to our very good friends house “Grandma Pat”. Pat adopted me when she noticed that Collin had handicaps. Two of her three children are handicapped. She has been an amazing friend and a HUGE help to me over these past five years. Anyways, it was Jeri (her daughter’s b-day) She turned 35 today. She is still very much a child and loves child like things. We bought her a very special bracelet. She loved it. I think that she loved seeing the kids more!! LOL

Please keep my little boy in your prayers. Please pray for him to get some sleep and that he can be comfortable. I am so worried about him.

Thank you all so much for your love and support. A HUGE Thank you to Ben’s mom for your sweet letter. You have no idea how much I needed that!!

BIG HUGS,
Julie
(mommy)
P.S. I do have one good thing to report. Collin’s MAW granter e-mailed me to say that his computer is in. So, maybe with in the next couple of weeks we will be able to get it. I hope that it will cheer him up!!


This is Collin on his trampoline today. I know that he doesn’t look like he is having a blast but I was happy to see this!!


This is a picture of Regan from today. I just had to brag… I made these jeans and matching hair bow. I think they turned out cute!!

Saturday, September 24, 2005 11:07 PM CDT

I am sorry that I have not updated in a bit. Things have so crazy and hard around here this week. Having my dad here was wonderful but he was worried the entire time about what he was going home to. Of course, all of us were worried about that. Collin did not sleep well that first night when he was here (Monday). So, then the next day we went to Chuck E Cheeses and had a blast but Collin was just not feeling well the entire time. It has been a very hard week for him. When he is like this I don’t know what to do and to be honest my spirits have been low.

Wednesday my dad left and I was very sad to see him leave. Luckily he could not go back into Houston so I didn’t have to worry about him but I did have to worry about my two sisters that live in Houston. Both of them got out of there. One is staying with my dad and the other is staying with her in-laws. I have been a huge mess worrying about all of them all week. I was also worried about our dear friends Lily and here family. They live near Houston. When I talked to Amy on Wednesday she was not sure if they were going to leave. Then I didn’t hear from her for a bit. Thank goodness her Aunt Kim called me to let me know that they were also out the area and out of harms way.

Most of the day Wednesday I was busying trying to do “normal” stuff. You see some times I feel like I have a “TTD” life and a “normal” life. My “normal” life is much harder. Let me explain…. Wednesday was back to school night for Collin’s school. So, I had a lot to do to get ready for it. During the day Nana watched Regan so that I could go over to the school and work on some things that I needed to do with the school uniforms. (I am in charge of ordering and sailing the uniforms) Then when Collin was done with school I went over to his class room got him and went home. Latter that night it was Collin’s back to school night. It is so hard to find someone to watch Collin at times. I don’t want to ask to much of our family because at times I feel like they might get burnt out because Collin is so much work. So, Jason watched the kids and I went to the school and did what I needed to do. Jason walked over with the kids when it was dark so that they could say good night to me. I wish so badly that Jason, Collin and Regan could have stayed and enjoyed the night and been there with me but it was just impossible. This is where “TTD” life and “normal” life but heads. GRRRRR……

Then on Thursday morning. Regan and I took Collin to school. Then the two of us went down to the Library at his school and worked at the book fair. Regan is such a trooper. She loves to be a “Big” girl and help mommy. When she sees Collin out and about the school she gets so excited to see him. She will just start yelling bubba bubba!!! It is so cute!

Yesterday I took Collin to see his Endocrinologist. They are very concerned about his Osteopenia and delayed bone age. So, they want me to take him in for more x-rays and see what, if anything has changed. The doctor wants to put Collin on pamidionate infusions once a month. This on top of his IVIG infusions every three weeks is going to be a lot for him. It breaks my heart that he has to go through so much. I am also concerned about what we should do…. Should we have them put in a port or have them poke him twice a month. He is so tiny and his little veins are so tiny. I am afraid that if they are poking him all of the time for his infusions than he was just get torn up. What am I to do???????????? I like this new doctor. He did not get over excited about Collin weight being so low like most of them do. He actually said that it is probably a good thing that Collin is so small now that he is weight bearing. If he were bigger than he would be fracturing his bones frequently. So, he does not want to growth hormones. I am personally not for them and a lot of people that I have talked to did not see a difference. So why do that to him.

Anyways, I am trying to pick myself up from a very long, tiring , sleep deprived, and emotionally draining week and put a smile on my face and get ready for next week!!!! God does not do anything by accident. I know that there is a reason that our sweet little family is going through what we are going through. I Know that with God anything is possible. Please pray for my little boy to have relief from his pain. Thank you!!

“Shoot for the moon. Even if you miss, you’ll land among the stars”. Les Brown

BIG HUGS,
Julie
(mommy)

Wednesday, September 21, 2005 2:41 PM CDT

We have had a wonderful past couple of days with my dad!! Both of the kids were VERY happy to see their BIG BAD PAW!!!


We went to pick up Collin from school and he was soooo happy to see his Paw and love on his beard.


Regan had lots of loves for her Paw!!

We wanted to have lots of fun while Paw was here. He flew in Monday morning. That night we went to the Aquarium to see the fish!! Everyone had fun. The birds really loved Paw and daddy!!


Collin and Paw touching the sting Rays.


So sweet!!!


Fun with the birds!!


Collin had a special friend land right on the stroller. He just talked away to him!!LOL

We had planned on going to Disney Land on Tuesday but the weather did not allow it!! Paw brought some rain with him from down south. We had rain, thunder, and lighting. So, we ended up going to Chuck E. Cheese’s. We had a blast!!









While my dad was here he bought me a new camera!!! YEAH for good ol’ dad!! Now I will be able to post lots of pictures again!! The only down side to our visit with Paw was that Collin had a VERY hard night on Monday. I don’t know how much sleep we got but it was not much at all. So, on Tuesday he was not feeling well at all. He was hurting and tired. He made the best out of it though!! He did not want to let Paw out of his sight!! Anywhere Paw was Collin was right there behind him. He gave him a TON of hugs!! Hopefully they will last until we get to go to Texas in December. My dad left this morning. We were all very sad to see him go. It was a very quick visit.

PLEASE PLEASE PLEASE keep my family in your prayers. Two of my sisters are in Houston. One of them is having to leave on a mandatory evacuation. My other sister is having to leave on a voluntary evacuation. My dad has his trailer that he stays in for a about three days during the week when he is working in Houston. When he was here he was thinking about driving form Dallas to Houston when he gets home today to pick it up and bring it back to Dallas. I am not sure if that is smart since the traffic is already so bad and also the weather of course. I have a feeling that he will most likely not go… I sure hope!!!

We love all of our friends and will come by and say him soon. I am sorry that I have not been by in a bit. Things have just been crazy around here!!

BIG HUGS,
Julie
(mommy)

Sunday, September 18, 2005 8:20 PM CDT

He everyone!!!
I hope that each and everyone of our friends and family are all doing well. It has been a so/so weekend. On Friday Collin had a good day at school. He is working so hard on his walking. I am so proud of him!!! I watched a friend of mines child. Her mother was having surgery so I watched her four year old little girl Emily. Regan loved having Emily there to play with. Collin does not play with her like she would like so it was nice for her to have a play mate to make a mess with. I really need to start getting her more play dates. Since Collin had a good day at school we toke the kids to Disney Land. We met up with Collin’s Buddy Paul and his family. (Paul is the one that made his b-day party in the evening so that Collin could come.) We had lots of fun with them. I think Paul really like the fact that since he was with Collin he got to go right to the front of all of the rides and didn’t have to stand in any lines.

Saturday Collin had a hard time. It seems to be that way lately. I am not sure if it is because he works so hard during the week or what but he was unwell. So, I had to keep him happy by playing his Disney land home video over and over. Of course I had to give him meds. As well. Jason went to a football game with friends. (UCLA vs. OU) So, I am sure that Collin was also a bit sad because that is usually his daddy time.
Jason and I were able to go out and get dinner last night while Nana and Grandpa watched the kids. THANK YOU SO MUCH!!! We needed it badly!!

Collin has not been sleeping well at all at night. It has been so hard on all of us!! Of course it takes a lot out of Collin because his body needs that time to rest and heal. Jason and I are walking zombies. We have been playing tag team at night. So we each get a little bit of sleep. It is not much but I will take what eve I can get at this point. I am worried that school is taking a lot out of him and then he is hurting much more at night. HMMM.. I am not sure if I will ever truly know what keeps Collin up in pain but wow what I would give to truly understand Collin and TTD.

Today we went to church this morning. They are so understanding of Collin and our situation there. I am so grateful to have an opportunity to go and learn, worship, and praise God for all of my blessings. I truly know that with God anything is possible. I have not given up hope that someday some beautiful person will come up with something to help children with TTD. Help make their quality of life better and their lives pain free. At this point I just want to spread the word. People don’t hear TTD and go Oh I know what that is ....like they would with something more known like cancer. I pray that someday doctors, patients, parents and people in the community truly understand TTD.

I hope that all of our sweet friends are doing well. I will most likely be out of touch for a bit since my dad comes tomorrow. I am trying to figure out what we should do while he is here. We only have him for two days but I want to make sure that the kids have lots of fun with their BIG BAD PAW!!!!!

BIG HUGS,
Julie
(mommy)

I have been talking about how well Collin is walking… Well, here are some videos of him walking to enjoy!!! (Thank you Mary Beth!!)
Just click on the pictures.





This one is not as clear but look at how he stops and steadies himself!!!!

Wednesday, September 14, 2005 11:05 AM CDT

Friday~~~~~~~~~
I just wanted to wish everyone a wonderful weekend!!


Believe in Miracles!

Love your life.
Believe in your own power,
Your own potential,
And your own innate goodness.
Every morning, wake with the awe
Of just being alive.
Each day, discover the magnificent,
Awesome beauty in the world.
Explore and embrace life in yourself
And in everyone you see each day.
Reach within to find your own specialness.
Amaze yourself,
And rouse those around you
To the potential of each new day.
Don’t be afraid to admit
That you are not perfect;
This is the essence of your humanity.
Let those who love you help you.
Trust enough to be able to take.
Look with hope to the horizon of today,
For today is all we truly have.
Live this day well.
Let a little sunshine out as well as in.
Create your own rainbows.
Be open to all our possibilities;
Possibilities can be miracles;
Always believe in miracles!

Vickie m. Worshman




Thursday update~

Yesterday was hard to say the least! When I picked Collin up from school. They told me that he had been itching his face a lot. Then she said that he had been rubbing his eyes the most. I just went oh no! I knew what was coming next. I looked in Collin’s eyes and sure enough there were blisters on his eye balls. His teacher said that she watched him carefully and that he did not have food on his hands when he rubbed his eyes. I don’t know it doesn’t take much. It was one of two things. It could have been the sun… but it was a beautiful cloudy morning yesterday or it would be from his jar food. So, needless to say it was a very hard and pain filled afternoon. As soon as we got home I put in his eye drops and started giving him meds before the swelling started to kick in. I was just praying that we could keep him out of the hospital. Poor thing was so miserable. When this happens he gets blisters on his eye balls, his eyes swell up, and some times if he rubs his eyes a lot he gets bumps around his eyes. Around 3:00pm I noticed that Collin and Regan were being VERY quite. So, when I peeked in on them I notice that Collin was actually watching the wiggles with Regan which he normally will not do. I sat and watched him for a minute and notice that his head was bobing a little. When I went around the front I saw that he was fast asleep sitting straight up. Poor thing!!!! I scooped him up and put him in bed and he stayed asleep the entire time I was messing with him. He slept for an hour and then woke up cranky from just not feeling well. If it is not one thing it is another. Sometimes I feel like I have to keep him in a bubble just to keep him safe. He would be miserable if I did that to him. We are meeting with a new doctor next week. I am excited because they are talking about putting Collin on immunogloblins infusions every three weeks. Yes, this will be hard in the aspect that it will take a lot of time going to the hospital and doing this so often BUT if it helps Collin’s immune system it will be VERY worth it!! Hopefully this will keep Collin out of the hospital this next flu season. Simple things like the flu and other things like that are so dangerous to Collin because he is so weak and can not fight it.

On a good note….. I got a phone call yesterday from my wonderful father. We talk just about every day. We are very close!! Anyways, he called to tell me that he was going on vacation next week. I said “must be nice to bad you can’t come out here.” His response was “How does Monday sound?” He was looking on-line at airline tickets and wanted to come out for a couple of days to get a “Collin and Regan fix”!!!! We were planning on going out to Texas to see them but it just didn’t happen because of Jason’s work. So, it was such a wonderful surprise!!! I have a wonderful dad and we are all happy to see Paw next week!!!

Today is Great Grandma Jo’s Birthday!!! HAPPY 75th BIRTHDAY!! WE LOVE YOU TONS!! Regan and I took her to breakfast this morning while Collin was at school. It was fun just us girls!! We gave her a gift which is always a crowd pleaser with her… a picture of Collin and Regan framed. (who wouldn’t love that LOL)

TODAY COLLIN WALKED 27 STEPS BY HIMSELF!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! WAY TO GO LITTLE MAN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I hope that all of our friends are doing well!!! We love you!!
Julie
(mommy)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hi~
Things here are going pretty good. Collin is still having a hard time with his body and knowing its limits. Luckily we have had a couple of cloudy days so that has been nice for him. Collin is having a hard time with temper tantrums. It is hard because you can not reason with him. So, at home and at school we are using time outs when he acts up like that. Regan gets the same punishment when she acts up but she understands it a little more than Collin does.

I have been crazy busy with bow orders, PTA stuff, and all of the daily little things that I have to do.. You know all of that fun stuff that comes along with being a mom! I would not have it any other way ! I love being a mom and being able to stay home with my kids. We have made a lot of sacrifices so that I can stay home but they are well worth it! This is such a fun stage that both of the kids are in and I don’t want to miss a moment. It also nice to be able to take care of Collin myself. I understand that some people don’t have a choice and have to work (I admire you) but I know that I would have a hard time leaving my child with someone else to take care of his medical needs. It is wonderful when I get a break from respite or family but I truly would not have it any other way. I feel so blessed to be able to be with both of my wonderful children!! I guess it is easy to feel that way when you have to perfect angels HaHaHa!!

I have a question for all of you fellow moms. I was approached by a dance studio yesterday asking me to make bow and head pieces for their recitals. Does anyone have children in dance. I would love to see a picture of them in their dance clothing to get an idea.

Yesterday even though Collin was not feeling 100 percent the kids found a fun way to pass the time. Grandpa bought a new printer and the kids loved the box!! They had lots of fun playing with it. It just goes to prove once again that it doesn’t matter what you get them they always love boxes the most!!LOL enjoy…



FUN FUN FUN!!!


Regan stuck in the packing material!


What a smile!!!

I hope that all of our friends are doing well!! We love you all so much and thank you for stopping into check on my little man!

BIG HUGS,
Julie
(mommy)

Wednesday, September 7, 2005 1:00 PM CDT

UPDATE: Monday Sept. 12,2004

I am so sorry that it has been so long since I last updated. I got caught up with all that has been going on. Collin did pretty well the rest of the week at school. He was so happy to be back. Friday evening we took the kids to a B-day party for Collin’s very special friend Paul. They made his party at 5:30 pm so that Collin could attend since it was at the park. HOW SWEET IS THAT!!! Both of the kids had lots of fun playing at the park and Regan even took a coupe good hit’s at the piñata. After the park we drove over the Disney Land so that we could take Collin and Regan to the light parade. We wanted to video tape the entire thing. Lately all Collin wants to watch are our home videos from when we have gone to Disney Land. So, we get there and guess what.. No more light parade!! We were all bummed but what can you do. So, we went on Dumbo and small world and then went home. (Of course we got it all on tape!)

Saturday and Sunday Collin was not feeling well at all. He was miserable to describe it best. We didn’t do much of anything all weekend because he felt so poor. We just stayed inside and gave him lots of meds. Jason and I had to take turns at night because he was up so much. Sunday we tried to go to church because Collin was wanting to go out. I went to class with him to see how he acted. He was crying and very clingy so I took him out and let his daddy cuddle him. I am so afraid that he did to much at school last week. Collin just does not know his body well yet. He does not understand that the sun hurts him and he does not know that he needs rest. So, then we end up with weekends like this. :*( I am not sure what to do. He loves school and loves to go go go but he just does not understand. I sure hope and pray that he will get to that point.

Last night Collin was standing by daddy with his back against the bed. Well, he ended up falling and hitting his face on our dresser. Poor this has a huge bruise on his cheek. I was so worried that he might have broken his cheek bone the way he was crying but it was ok!! Collin can not stand on his own. If he leans on something or holds onto something than he is ok but if he looses his balance or lets go this is what happens. He has had so many stitches, bruises, and trips to the urgent care. They even interviewed us one time as if they thought we beat him. NO WAY!!! They just don’t understand. He wants so badly to be independent but just isn’t there yet.
Thank you for stopping by to check on my little man!!

BIG HUGS,
Julie
(mommy)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
update: I picked up Collin from school this afternoon and they said that he did wonderfuly all day!!! He even cried the entire way walking home becuase he did not want to leave!!LOL It was very sweet when Regan woke up from her nap and saw that Collin was home she kept going over to him and giving him kisses. It was so sweet!! YEAHHH for good days!


This morning was a good morning!! Today was Collin’s first day of school. He was so excited when he realized that he was getting to go to school. I borrowed Nana’s camera. I think that these pictures some up our morning very well…. Enjoy.


Regan had to get in the picture with Collin. I could not get one of him by himself. It was funny.



Regan decided that she would carry bubba’s back pack for him!!



Collin was sooooo happy to see Ms. Shirley!! He had LOTS of hugs for his very special teacher!!



Collin was also very happy to see Grandpa Al. He volunteers in Collin’s class. He was in a car wreck at the end of last school year and Collin has not seen him in a long time!! He was so happy!!


Of course Collin had to go and say hi to all of his favorite toys!


Regan was happy that her friend Annie was there to play with while Mommy had to do some PTA stuff.



Cutie!!


This is a picture of Collin out on the play ground. I think it is so funny. I am not sure if you can see it in this picture but his face is already so dirty!!

Thank you for stopping in to check on my little man!!
BIG HUGS,
Julie
(mommy)

Monday, September 5, 2005 11:06 PM CDT

Thank you so much for checking in on my little man. Oh, lets see. …. Sunday Collin woke up in a so/so mode but he wanted to go to church. He is so funny. He knows right what to do to let us know what he wants. He will pull at the bag with his books in it because he knows that we take it with us to church. So, we all went. I took Regan into the nursery class with Collin and stayed while someone taught my Sunday school class. I am going to stay with her for a bit until she gets used to it so that she doesn’t give them a hard time. I left the room for just a minute to throw away Collin’s dirty diaper and she broke down in tears and freaked out because she thought that I had left her. I could not calm her down and she didn’t even want to play with Collin or the other children after that. So, we will try again next week. Latter in the day I made dinner and Nana came back home from taking aunt crystal up to school!!! The kids were VERY happy to see Nana!! They had lots of hugs and kisses for her.

Today has been a VERY crazy day!!!! I thought that it was going to be a relaxing Labor day!! HAHAHA.. Like that would ever happen!! Collin had different ideas that little stinker!! He woke up in an awful mode and just was not feeling well. This was hard since I did not sleep well last night because Regan woke up twice with her I teeth coming in. Nothing that Jason or did could make Collin happy. Jason was watching the kids while I was getting ready and then I hear “OH NO!!” So, of course a million things run through your mind right!! Well, neither of the kids were crying. Collin had ripped his glasses of (like he always does when he is mad or wants to get attention) and something happened to them!! The BRAND NEW pair of glasses that I just got him were broken in two!!! YIKES!!! Jason says that he has no idea how it happened. I did hear him telling Regan to pick them up and bring them to him…. You don’t tell a one year old to bring you glasses.. … what where you thinking…LOL. It took everything I had to not get mad about it. So, I finished getting ready and gathered the kids up and put them in the car and off we where to Lens Crafters where we got his frames. So there I am fighting with both of the kids.. Collin’s mad because he can not see and Regan was tired because it was her nap time!! Then the man told me that no they did not have that frame there and it would take any where from 10 days to 3 weeks to get them in!!!! WHAT!! Collin starts school on Wednesday he has to have glasses. Then I pleaded with the man to call any of the other Lens Crafters any where around here and ask them if the had the same frames so that I could go and buy them. He called the first place and of course no… second place no…. buy this time I was almost in tears. When the man called the third place they said yes we have that frame!! Good news right… well it wasn’t very close.

So, I took the kids home fed them lunch. Jason was home so I was able to put Regan down for a nap and he stayed with her. Then I called Grandma Jo to see if she wanted to go with me to the Mall where the glasses were. She knows that area much better than me. Luckily she was close by and was more than happy to!! Yeah for good grandmas!!! We drove all the way over to the mall and Collin poor thing was in the back of the van holding onto one side of his glasses trying to keep them up so that he could watch his blues clues. By that point I just had to laugh! We got there and yes they did indeed had the right frame and it fit perfect! I wasn’t happy about having to buy new ones since we just bought the last pair only a month and a half ago but what can you do!! I am just happy that we were able to get some before school starts!

My dad called me yesterday to let me know that my Aunt received her power back and that is so wonderful. All of the poor people are suffering so bad. I was so worried about her because of her health and the medical equipment that she needs. Please continue to join me in prayer for these people.

Thank you so much for stopping in to check in on my little trouble maker!! Thank you for your love and support! I have to say a HUGE thank you to Mrs. Pam for Collin's card and picture. Your costume was VERY cute. Collin would not let go of the picture. He kept kissing it. What is funny though is that he kept holding it up to his ear.. as if you were saying something to him. It was so funny. I have not ever seen him do that before. Thank you!!

BIG HUGS,
Julie
(mommy)

Oh, I did contact CB and they are going to do something to help make Collin's Guest book load faster. They said that it should happen with in the next couple of days. Thanks for the advice Brenda!!

Saturday, September 3, 2005 9:46 AM CDT

Happy Saturday!!!! I am so happy to report that things have been much better lately. I am sorry that the last entry sounded so down but it was just a hard day. Luckily Collin was not with me so I was able to get all of those emotions out. Sometimes it is hard because I have to hold in my emotions because Collin and Regan are around and I do not want to seem down. So, it was actually a good thing believe it or not. There will always be hard days in our lives and it is impossible not to be sad… it is just important that we don’t stay sad to long and we move on. If we don’t ever experience sorrow how will we ever know joy??? I am happy that I got it out of my system so that we can enjoy Collin’s first day of school next week!!!

Collin has been having a VERY hard time these past couple of days. He has been in pain and itching and he just going crazy being stuck inside. Thursday I took the kids shopping so that we could get the last of Collin’s school clothes! When we were walking around we saw crayons for only 9 cents. So, we got a ton for Collin’s classroom. We also go finger paints!!! It was nice to get Collin some “real” school supplies even if it is not required I know that his teacher will be grateful. They do a lot of art projects so this will come in handy. Regan is such a little diva already. I don’t know what I am going to do as she gets older. I have told Jason that he need s to get another job to support her shopping! LOL When we are at the store she didn’t like that bubba was getting all of the attention. So, I let her pick out a shirt as well. I held up two for her to pick…well, she picked both. She would not let go and made a huge seen because she wanted both of the shirts!! She is only a year and a half. I am in trouble!!!!!!

Yesterday Jason and I decided to make it a very fun day for the kids since this was Collin’s last fun day before starting school next week. In the morning we went to the mall. Jason took the kids around the mall and let them ride the quarter rides while I got my hair cut and then we went home. I made the kids rest so that we could have a very funny evening. Collin was not feeling well so I was afraid that our plans were not going to happen. We decided to go ahead and try. WE WENT TO DISNEY LAND!!! YEAH!!!! We all needed it!! We went at 6:30 pm so the sun was pretty much going down over there by the time we go there. Collin was soooo excited!!!! As soon as he saw the tram to go into the park he started yelling because he knew where we were! It was so much fun to see him so excited and not hurting. Well, if was hurting he didn’t complain once because he was having to much fun!!! We did all of the kids favorite rides but we decided to stay much latter than we usually do so that we could take the kids to the light parade. Collin was so happy! He LOVED the lights. He kept smiling, yelling, dancing, and having a blast!! Oh, it was so wonderful to see. Regan had more fun with the pre-parade music. She was dancing all over the place. She wasn’t so sure when the parade started since it got so dark and so loud. We left after the parade with two VERY tired little kids. I am so happy that we were able to do that!!!!

I think that I might make Collin and Regan Peter Pan and Tinker Bell for Halloween… or maybe a dragon and princess. I am still not sure. Do any of you have any ideas??

Please continue to join me in prayer for all of the people in the south that have lost their loved ones, homes, and all hope. My heart breaks for them. I am worried about my aunt. She is at home with hospice and they are unable to move her. The temp. is reaching over 100 and the air conditioning is not working. It is not very comfortable living situation. I feel blessed to know that all of my family is safe. I feel so grateful that we have a home and all that we need.

I hope that you all have a wonderful weekend and enjoy your holiday weekend. Thank you for your love and support!!
BIG HUGS,
Julie
(mommy)
Sorry no fun pictures from last night… my camera is still

Wednesday, August 31, 2005 11:02 PM CDT

Let me start off today by saying how truly blessed I feel. I have been watching all of the devastation in Louisiana on television and feel so lucky to have a home and my family safe. I can’t imagine how hard it would be with Collin and all of his medical needs and equipment to just pack up and leave town never to see our home again. My heart goes out to all of those people who have been affected by this horrible hurricane. I will continue to pray for them. I am so grateful that my family in Louisiana is safe. They are with out electricity, can not use their bathrooms, and having a hard time but they are alive and out of harms way. My dad spoke with some of them and they are going to other places for the time being. My dad lives in the Houston area and might end up having them come his way. I will say it again … I am so thankful to have a home to live in and my family with me safe. Tonight after Jason got home we took the kids and went over to our local red cross to make a donation to the hurricane relief fund. I wish that we could have done more. My heart truly breaks for the families that lost everything.

Today was a hard day for me. It was kindergarten registration at Collin’s school. Collin should be going to kindergarten this year. He will not be running in with all of the other children for the first time but I will be wheeling him in for the third year. I had to go and sale uniforms since I am in charge of that with PTA. I have to admit that I did cry. It was hard to see the children so excited and pulling their parents this way and that way. Telling me who their teachers were and talking about all of their fun supplies. Collin’s supply list is a little different than theirs… instead of bringing pencils I will be bringing him diapers. Instead of bringing glue I will be bringing a change of clothes incase he vomits all over himself at school. Instead of having him run in with a new pair of tennis shoes I will be wheeling him in with tall boots on that give him support. Instead of carrying his back pack on his back it will be hung on the back of his wheel chair. I don’t mean to sound so down but this year is so hard for me. Collin’s past two years were not this hard I guess just because he was only 3 and 4 years old and it just felt like a pre-school setting. Well, this year he is five and a “kindergartener”. I did not go to the orientation just because Collin does not have a kindergarten teacher. I just sat out front and sold clothing to all of the happy families that were so excited about the first day of school coming up. Please don’t get me wrong. I am VERY grateful that Collin has the teacher that he has. I feel truly blessed to have them working with him. They are amazing women and he truly loves each one of them so much. I know that they love him as well. It was just a hard moment today.

On a happy note.. I got everything figured out with our insurance company about getting Collin’s gait trainer. He is going to get a brand new pacer gait trainer covered 100 percent by the insurance company!!!!!!!!!!!!! YEAHHHH!!!! This is wonderful news. They also assured me that there would not be any problems when it came time to get a new seat for Collin’s wheel chair!!!

Collin has not been feeling 100 percent. It has been very hot and bright which is not good for Collin. He has been getting little boils on his face. They look almost like pimples. I have learned how to take care of them so that we do not have to take him in every time he gets them because it is so frequent. This morning he woke up with a boil right on the bridge of his nose were his glasses sit on his nose. I felt so bad for him. He doesn’t ever seem to get a break.

We also made another special donation tonight. It was not near as much as we had planned on since we donated the majority of it to the Red Cross but we wanted to support our good friend Devin. He is going to be doing something VERY special coming up soon. He is going to be in Light the Night . Where he is walking to raise money and awareness about childhood cancer. Please stop by and support our dear friend Devin.Devin's Page ! We love you Devin and are so proud of you!!!!

Thank you all for stopping by to check on my little man!!! I am so grateful for all of your support. I can’t tell you how much it means to know that I have so many dear friends out there that love and pray for my baby.
BIG HUGS,
Julie
(mommy)

Monday, August 29, 2005 11:13 PM CDT

Today went ok. Collin was in a good amount of pain. He was asking for medicine this morning. Ok, so you might be asking how can he be asking for medicine if he can not talk. Well, he goes pulls up on the cabinet that I keep it in, opens it, pulls the medicine out, and pushes it over to me. Poor thing. Today was a VERY bright day. We tried to go outside and it did not work. I feel so bad for Collin because he does not mentally understand that the sun hurts him so bad. He is like any other five year old and he just wants to go outside and play. Then after we get outside he wants to go back in because he is hurting. We went out early this morning. The kids were up by 6:30 and we were outside by 7:00 but it was already to sunny!!!! Oh, I wish that ol’ sun would just give us a break for a bit. I did take the kids to the mall for a bit. They of course rode on the quarter machines and we walked around. They were both very happy to get out of the house. Collin is getting so bored so much faster now that he is getting older. It used to be so easy to keep him busy when he was smaller but not I am always running out of ideas. Collin starts back to school next week!!!! YEAH!!! I just hope that he feels up to it. He LOVES school. It is a wonderful distraction for him from all of his pain. They are all wonderful there and love him so much! He truly adores all of them. He has them wrapped around his little finger. Shoot, he has the entire school wrapped around his little finger LOL. Tonight we were able to go out for a little bit. We just let the kids stay up latter than usual. Collin is normally in bed by 7:00 after we give him his meds. That make him sleepy. Tonight we held off give them to him until latter so that he could get outside for a bit. It has been so hot and so sunny!!! I should not be complaining though. We are lucky that we are not in Louisiana and going through all that the people there are going through. We have family there and have been worried about them. We are going to enjoy our last week with Collin home before he starts school. Tomorrow we are going to spend time with Great Grandma Jo and hopefully if the weather allows we will go to Disney Land late Friday night and just let the kids stay up as late as they can. LOL We hope that all of our wonderful friends are doing well. You all mean so much to us!!! Thank you for your love, support, and prayers. Ok, so for today’s blast from the past I am going to put up some more Halloween pictures since it is getting closer. I am not sure what I am going to do with the kids this year. If any of you have any good ideas let me know.


This is Collin’s first Halloween. He was only four months old. My cute little frog!!!


This is Collin’s 2nd Halloween. He was almost a year and a half. What a good looking’ Monkey!!!


Collin’s Third Halloween. He was an Indian and his buddy was a cowboy. Collin is lucky to have two wonderful grandmas that make him such wonderful costumes.


Some of you asked what a gait trainer is…. Well, this is a gate trainer.. A VERY old gait trainer.( It is over 25 years old.) It belongs to Collin’s school and they let us borrow it. So, we need to get him his own. We turned it into a horse when Collin was a cowboy!!

I pray that all of our little friends are doing well. I am sorry that I have not signed guest books in a bit but it has been very difficult to get on the computer with Collin not feeling well. Please know that we love you all and think of you often!!!
BIG HUGS,
Julie
(mommy)

Friday, August 26, 2005 10:27 PM CDT

SUNDAY UPDATE:
Thank you all for your kind words you are all so sweet. Yesterday was a VERY hard day for Collin. He was not feeling well at all. He did not sleep at all on Friday night and was just up in pain. Yesterday was hard becuase he is so upset and moody. (I am not sure how much of that is from the steroids) I have to either be holding him or doing what ever it is that he wants at the moment. I won't lie it is very difficult. Jason told me several times yesterday "I don't know how you do it all of the time."Last night Collin did a little better. I ended up in bed with him around 3:00am. We did go to chruch today becuase he was beging. He just sat at the front door letting us know how badly he wanted to go out.

Thank you for your prayers. Don't worry about me I am sure that all will be ok. I have some health problems that the doctors have known about for awhile and are watching. I have been putting off going to the doctor becuase I know that the tumor is getting larger and to be frank I just don't want surgery. The past week it has been causing alot of back pain and cramping. I am going to go into the doctor soon don't worry. Jason is making me!!!! Thank you again for your concern but truly I am sure that there is no reason to worry at all.

I am still hoping for clouds this week so that we can take Collin to Disney Land before he goes back to school next week.

I will leave you all with a quote that I have been thinking of a lot lately.
"God gave us memories, that we might have June roses in the December of our lives."
Jasmes Barrie
I love this becuase it is so true. It is so wonderful to have to good memories when we are going through trying times. We love you all tons!!
BIG HUGS,
Julie
(mommy)


Friday:
I just wanted to say a HUGE thank you to everyone that has left sweet messages, sent happy mail, or that prayer for our family. This week has been a very trying week for many reasons. I will not go into it but thank you so much for keeping our family in your thoughts. It means the world to me.

Today we were unable to do much because Collin was not feeling well. We went outside this morning before the sun came up but he was wanting to come in just thirty minutes latter. In the afternoon I took Collin to get his wheel chair adjusted. His wheel chair has been a HUGE mess. We got Collin wheel chair through a vendor that went out of business. To make matters worse when we went back east Collin’s head rest was broken off of the wheel chair. The airline was more than happy to pay for the repairs. Well, this guy took Collin’s head rest and the information from the airline never to be heard from again!!!! Anyways, I have been fighting with our insurance to get Collin’s chair adjusted because he was out growing the seating that it was at and his brakes were not working very well. When Collin’s case worker from Regional center came I told her about the problems that we were having and she got me into a wheel chair clinic that they were have there for free!!!!! YEAH!!! We did have to fight Friday L.A. traffic which was no fun but Collin’s chair fits him so much better now!! I am so glad that it is fixed before he starts back to school. Another positive thing about today is that when I was talking to man that was working on Collin’s chair I told him about the problems I was having getting Collin a gate trainer through our insurance. He told me that they had a four year old brand new gate trainer in their ware house that he though he could get me very cheap… like only a couple hundred bucks!!! They have come out with a newer model and it is a very small gate trainer and it is just sitting there!! I sure hope that things work out with that. It would be an answer to my prayers!!!!!

So, continuing with my blast from the past with pictures I was trying to figure out what I would put up today. These pictures are VERY dear to me. When Collin was born he had cataracts on both of his eyes. So, he could not see me. At five months of age Collin had three eye surgeries. They would only do one eye at a time due to possibility of infection. After the second eye surgery Collin had glaucoma as a result from the surgery. When Collin’s first eye had healed I had to learn how to put contacts in Collin’s tiny little eyes. I was so terrified that I would hurt him. When we were in the office Collin fought it and would not open his eye. Later when we got home I tried so hard to put the contact in Collin’s eye. I was in tears, just worried that I would hurt him or that I wouldn’t be able to do it. Finally I was able to do it and wow I can’t even begin to explain in words what an amazing moment that was to have. My son look at me for the very first time!! I was crying and smiling and luckily my mother in law grabbed the camera and made it so that I can enjoy that memory forever. Now I would love to share this very special moment with you.



See how he is looking at me!!! Oh I love this picture!!!!!!


Poor thing!!


My # 1 little man!!!

I hope that you all have a wonderful weekend!!
BIG HUGS,
Julie
(mommy)

Thursday, August 25, 2005 3:56 PM CDT

Wow, where did the time go… I am sorry that I have not updated in a bit. Things have been very stressful and crazy around here. Tuesday Aunt Crystal left for College and we were all very sad. I could not stop crying all afternoon. Every time that I thought about her being gone I just couldn’t help but get teary eyed. Don’t get me wrong I am VERY proud of her and am so glad that she is going off to school. WE LOVE YOU AND ARE SO PROUD OF YOU AUNT CRYSTAL!! We did not do much of anything on Tuesday. Collin was very tired. I did have to go to a PTA meeting for Collin’s school. School has not even started and I am already doing stuff…. I don’t know why I do it to myself sometimes. Well…. Yes I do. I didn’t like the way that the special ed was being over looked so rather than just complain about it I ended up getting on the PTA Board.

Wednesday we went with Great Grandma Jo the Aquarium. We like to go as soon as the open so that there are not many people with. We have got it timed to a science. If we get there at around 9:00am and stay for an hour or an hour and a half then we are doing good and can get out before it gets crowded. On our way back we stopped at the pier and let the kids ride some quarter machines. The sun was to much for Collin and we had to leave just minutes after getting there. Today I took the kids to Chuck E Cheese’s this morning for a little while so that the kids could get out. The sun is to harsh to take them outside today. I am praying for some cloudy days. I would really like to take Collin to Disney Land before he has to start back to school in a couple of weeks. I know that he misses it. In the fall we will be able to go all of the time again but for now the sun is just to harsh.

I received the wrong information about the party at Collin’s hospital. It was last Friday not tomorrow. So, I don’t get to hand out bows. I will just have to bring them on another day. I am bummed about that but what can you do. I have not heard anything about Collin’s wish so I am not sure what is going on with that at this point. Hopefully we will hear something with in the next couple of weeks. For now I am just trying to keep both of the kids happy and entertained. Collin has had a lot of low key not feeling good days lately which is hard on everyone. Regan gets so frustrated because we can’t do anything. I feel so bad for both of them.

Thank you all for your love and support!! It means the world to us. BE SURE TO SING THE GUEST BOOK SO WE KNOW THAT YOU WERE HERE!!

BIG HUGS,
Julie
(mommy)

Here are some pictures of Collin from April 2004. Collin was being honored as the most inspirational student for the Long Beach School district along with several other students at a $100.00 a plate dinner. I was so proud of him!!!!


My little man!!!!


Collin got a standing ovation when he got his award!!!!!


Collin and his teacher. Collin loves Ms. Shirley VERY much.


One happy family. I was so huge in this picture. This was only four days before I had Regan. I wasn’t even sure if I was going to be able to make it.

Monday, August 22, 2005 10:25 PM CDT

Well, this weekend went pretty well. Saturday Jason had to work in the morning and then when he got home we went to the Mall for a bit and let the kids ride the quarter rides. When we got home Collin was tired and even went over and got his medicines and brought them to me. He knows that it helps. Latter that night after we had the kids ready for bed Jason and I went out on a date. We got dinner at California pizza kitchen then we walked around the pier by the ocean. We also went on a Ferris wheel that was down at the beach. It was a very nice evening. It is nice to get away but I will not leave Collin with just anyone.

Sunday we went to church and Collin was able to come. He LOVES church and has several friends there. They all love him so much and are so kind to him there. Regan is going to start going with him to class soon. That should be fun for both of them.

Today Collin did not have a bad day but he did not have a good day. He was not feeling well and just wanted to take it easy and lie around. He loves to watch home movies. So we did that most of the day. He went to bed very early this evening.

Tomorrow is going to be hard for all of us. Aunt Crystal is going away to college. We are going to miss her VERY much. They are few people that I trust with my babies and she is one of them. She is a wonderful Aunt to both of my children. She has a special way with Collin seeing as how he can be very difficult at times. I am so proud of her for going off to school but we will miss her terribly. L WE LOVE YOU SO MUCH CRYSTAL!!

This next couple of weeks are going to be hard since all of my help is going to be out of town. Nana and Grandpa are taking Aunt crystal to school in Idaho so I will not have a ton of help. I might actually have to use some of my respite care for Collin.

We hope all of our friends are doing well. We love you all so much and are so grateful for you support. Thank you to Lily’s Aunt Kim for the kids cards. They loved them. Regan hid them in the ball pit!! LOL
BIG HUGS,
Julie
(mommy)
Here are some old pictures of a wonderful BIG brother!!

This was the day that Regan came home from the hospital.


Collin playing with Regan!! How cute!!



My two little cuties!!!


Collin giving Regan kisses.

Friday, August 19, 2005 7:33 PM CDT

Thank you all so much for your kind words of support. It has meant so much with this crazy hard week. Well, lets see. Collin had a very hard day yesterday. Aunt Crystal and I even took them to the mall in hopes of making him feel a little better but that did not happen. Collin received the sweetest post card that he will not let go of. He has been pushing it all around the house. Mrs. Pam sent us a picture a her Prayer rocks in her garden and yes one of them said Collin. It was so sweet and thoughtful. You have no idea how much that made my day!! Also, thank you Aunt Lisa for the kids cards. They LOVED them!

Last night and today I have been up to my neck in ribbon…LOL. When ever I can find a free moment… when the kids are sleeping I have been making bows. I have a large order from the little boutique in Sunset beach. So, I have been working like crazy to get it done by this weekend because she is having a big sale this weekend and I wanted to get them to her before the sale. Oh, I hope that they sale well. This will be fun money and any of you that have tons of medical bills knows how needed fun money is from time to time. Don’t worry I have not forgotten about our CB friends. Taryn I have made your bows and Kari you will be next!! After I get done with this I will start on the bows for the sweet little bald girls out Collin’s hospital for the party.

Today Collin is doing pretty well. We went and got him some new school shoes and had lunch with Great Grandma Jo. We went to her house and the kids played for a little bit. She LOVES it when they come over to her place and make a mess. LOL Well, since my camera is broken I though that I would get into some fun old pictures. These are from Halloween. …. Have fun. Thank you all again for your love and support!! It means so much!!!

BIG HUGS,
Julie
(mommy)


This is Collin Oct. 2003. He was a cowboy and I turned his walker into a horse. His buddy Nolen was a cowboy also.


This is Collin Oct. 2004. He was a Race car driver in his little speed racer!!


This is Regan Oct. 2004. Her very first Halloween. She was a cute little ladybug.

Wednesday, August 17, 2005 11:36 PM CDT

Sorry it has been a few days since the last update. This has been a very trying week so far. Things have been crazy. Monday Collin had a very high pain day. So, this meant a lot of pain meds., lots of cuddles, and not going outside at all… even at night. Tuesday Collin woke up and was feeling better so we were able to go the Aquarium for a bit with Great Grandma Jo. The kids love going there and it is nice and indoors for Collin. We got a notice in the mail saying that our accountant had made an error on our taxes from 2003. So, we are being audited. (like we don’t have enough to deal with!!!) We have to go to storage and get out all of Collin’s medical bills from that year and a good bit more of information. They say that we owe them quit a bit of money!!! ONE MORE THING!!!! I tell you some times it just seems like we have trial after trial. If it is not one thing it is another. I am trying to keep positive and pray that everything gets worked out. Today Collin spent some time with Nana and I took Regan with me to do some running around. I went to a little boutique in Sunset Beach that is very high end. They are going to carry my hair bows!! (on a trial basis of course) YEAHHH!!! So, that is a positive with all the crummy stuff. I do not have any new pictures to post because well… more bad news.. My camera broke!!! If you know me you know how much I love my camera and I am ALWAYS taking pictures of the kids. So, yes I am very bummed about this. I am not sure if Collin is going to get everything that I had talked about in my last entry for his wish….. I will explain latter. …Because of his age he might now qualify for some of the things we had talked about.

I am sorry that I have not been able to sign a lot of guest books. I check on our friends often but just don’t always sign. I love you all so much and am grateful for your love and support.
BIG HUGS,
Julie
(mommy)

Sunday, August 14, 2005 9:52 PM CDT

Hi.. It has been a wonderful weekend!!! We needed a weekend like this so badly!!!! Saturday Jason, Collin, Regan and I all went to the Aquarium together. It was very crowded so we didn’t stay to long but we still had lots of fun!!!

Today we woke up nice and early to a beautiful cloudy day. We were able to go to church. Collin was so happy since he has not been able to go in a bit. When we got home Collin’s wish granter from Make A Wish came shortly after. WOW, let me tell you these two women are very sweet and made us all feel so good about what they were doing for Collin. They volunteer their time making wishes come true. Not only do they work jobs all week but then they go and bring smile to the faces of sick children… wow!! They brought the children gifts. A blue’s clues doll and an Elmo toy. Both of the kids loved them. We talked to them and think we know what we are going to do for Collin. There is a special computer that would be perfect for him on days when he is “stuck” inside. Collin LOVES the computer and even Kristen and Kathy saw how much he loves it while they were there. We had to pull him away to say hi. They said that the computer was not enough. They want to take Collin in a limo to a local mall and take him on a shopping spree while his computer is being set up at home. They are truly going to treat Collin like a Rock Star. I am so excited!!! It is so nice to have positive things happening rather than the normal… fighting medical bills, cleaning vomit, doctors appointments, etc. It was just a nice little break today. So, we will most likely do his wish around the first of October. THANK YOU Kristen and Kathy!!!!!!


Kristen, Collin, and Kathy





I am excited. Kristen works in the oncology ward at Collin’s hospital I was talking to her about something I would like to do for some of the kids in her ward. I don’t know if you have ever noticed that in almost every picture Regan is wearing a hair bow… Well, I make and sell these bows. I told Kristen that I would LOVE to make some for some of the sweet little girls who have lost their hair. I think what I am going to do is bring them to a party that the hospital is having for kids that are or have been patients… So, we will be there anyways. We will see how it goes over and if they like them then I will make more and bring them back at a different time. (If any of our CB friends would like one just let me know)

Also, I want to tell you about a friend of ours Ezra. We met him two years ago when we were staying at the Children’s Inn at the NIH in Maryland. He has been fighting cancer since he was sixteen years old. To raise money for several charities that have helped him out (including the children’s Inn where we met) he is selling some special rubber band bracelets. They say pray for Ezra. He has already been able to raise $4,000.00 for three different charities. Please stop by his web page and show him your support.http://prayforezra.blogspot.com

We are so grateful to everyone for your support!!! I feel so lucky to have met so many wonderful friends!!!! Please pray for our sweet Sammy-Joe he is not feeling well. Also, please continue to pray for Angel Chris’ family.

DON’T FORGET TO SIGN THE GUEST BOOK!! THANKS!!
BIG HUGS,
Julie
(Mommy)




Uncle Bryan playing Collin the guitar.


Regan eating her very first push pop tonight!!

Friday, August 12, 2005 4:18 PM CDT

Hi!! Happy Friday!! Things are looking up. Collin is getting his appetite back and is doing better!! Yeah!! Yesterday I had an appointment with one of Collin’s case workers it went ok. It is just a pain sometimes having to jump through so many hoops to get Collin what he needs. I am glad that she is finally understanding Collin’s problems more. I also had to get on the phone with another case worker because they had cut off his diapers?? What??? So, it should all be worked out. (Hopefully)

Since Collin was doing so well I took him and Regan to Toys R us and let them pick something out. Collin got yes.. Of course a book… this one was a talking blues clues book. Regan choose a Dorothy the Dinosaur Doll. She will not put it down!! When we got home there was some happy mail waiting for us. It was from our special friends in Texas!! Thank you so much!! Collin LOVED the ball and Regan LOVED the play-Doh. I especially liked the beautiful card that Natalie drew for them. Latter in the evening when the sun was going down Collin felt good enough to go out and play!! YEAHHHH!!! Things are definitely getting better!! He is such a warrior!!!





Today when we got back from Newport and the kids had more happy mail!! Thank you Sammy-Joe and family for always thinking of my kids!! It is so wonderful to have such overwhelming support all over the world… from Texas to Australia. THANK YOU!! Thank you to everyone that has sent happy mail, that leaves sweet messages and that prays for my sweet little boy.

Collins MAW granter is coming on Sunday now. I have to admit I am having mixed emotions. Ok, let me explain I don’t want any of you to miss understand me. It is just that well.. When you get a wish granted from MAW it is for one reason and we all know what that is. Well, to be completely honest with you .. I like to live in denial when it comes to loosing my little boy. I mean I know that there is a good chance that I will not have him as long as I would like but I don’t like to think about that. So, this whole thing has had me thinking a lot about it. At first I was wondering if Collin should get a wish…. Did he truly qualify…. Well, of course his doctors think so and that is why they want o grant a wish. It is just hard to think of a life with out him. I am sorry if this sounds sad but it is just some of the emotions that are flying around in me right now. Anyways, Jason and I have been talking a lot about what we should ask for. I think we will end up asking for something for the house for Collin to enjoy while he is “trapped” inside. A trip would be lovely or many other things BUT Collin would not ever enjoy it. He could not be out in the sun and to be honest I would worry if he would be well enough to travel and then be up to doing stuff.

I hope that all of you have a wonderful weekend!! We sure plan on it!! Thank you so much for all of your prayers!! They mean so much!!!
BIG HUGS,
Julie
(mommy)

Here are some fun pictures from our dark night last night!!…..


There is that smile that I missed!!!!


Regan playing ball with bubba!!


Collin being silly!!


Regan being silly!!

Wednesday, August 10, 2005 0:44 AM CDT

Wednesday August 10, 2005

I don’t have much to report. Collin has not made really much progress. He is not doing bad but he is just not doing good. He really needs to start eating more. I spoke with Kristen , Collin’s MAW wish granter, on the phone today. She sounds so lovely. She asked so many questions about Collin. We are going to meet her on Monday night. She was asking what the kids liked so that she could bring something for them on Monday. This is going to be lots of fun!! I don’t have any new pictures of Collin so I though I would dig into some of my old ones just so you can see how far Collin has come.


Collin at birth.


Collin in his stander. He could not even sit up at this point. WOW does anyone need a stander LOL


Collin at his graduation from his pre-school before starting elementary school two years ago.

These are just some cute ones of Regan from this past week!!




We love you all tons and are so grateful for all of the support that we have received. We are hoping to go the aquarium soon. I hope that Collin gets back to 100 percent soon. (Well, what ever 100 percent is for him)
BIG HUGS,
Julie
(mommy)


Early morning update:
THANK YOU all for your love and support!!! It has been such a HUGE help over this past four days. Collin is continuing to make progress. Today he ate five jars of food. Still not as good as I would like but he is getting better. On an average day he eats 10-12 jars of food. He is very frustrated with me since I will not let him out of the house!! Mean mommy!!!!! I just do not want to take any chances since he is so weak. I have to admit that Regan is pretty frustrated about that also. (well, so am I!!!)LOL

I did not take any pictures when we were in the hospital because … well, to be honest I think it might have bothered people to see Collin like that. He is tiny to begin with but when he is sick and does not have any clothing on his ribs stick out as if he had been starved for months. It is hard to see. I just pray that he puts back on some weight soon!!! Just to give you an idea of how small Collin is (let me remind you that he is five years old.) On the boys birth to 36 months scale Collin is in the 50 percent of a 12 month old for his weight and the 50 percent of a 25 month old for his height. (Collin is no where near the chart for his own age. ) So, he obviously does not have anything to loose.

Things are looking up. I am looking forward to what the Endocrinologist can tell me. Collin’s smile is back on his face and I have missed it so much!!! Today we got contacted from Make a Wish. They recieved the paper work from one of his doctors and want to meet with us!! How cool is that. So, I have to start thinking of what would be just for Collin.... HMMM... Maybe a computer like Alex. I will let you know how that goes. Thank you again for your love and support. Be sure to sign the guest book!!

BIG HUGS,
Julie

Monday, August 8, 2005 9:56 PM CDT

I am sorry that I was not able to give longer updates but it was just to hard. Things are getting better. Ok, lets see I will start from the beginning. On Friday Collin started vomiting. He continued through out the night and the next day. Then latter on in the day he started having diarrhea. It was to the point that NOTHING was staying in him. So Saturday morning I took him to his Pediatrician to see if we could keep him out of the hospital. So, we started giving him one tsp. of Gatorade every five minutes. This did not do it and we ended up in the hospital. Collin’s dr. called to let them know that we were coming. They had to hook him up to IV’s. The doctor confirmed what I was thinking. Collin had roto virus. Yes, very odd since it is August. With Collin’s immune system there could be one tiny germ and it would not do anything to anyone else but to him it does all of this. Regan and I were with Collin all week and we did not get it.

Anyways, we ended up leaving the hospital at around 1:00am. Collin was in so much pain and was so tired. On the way home though he just started smiling and talking to what seemed to be thin air. BUT I have a feeling that one of his special angels were sitting with him back there and trying to cheer him up. (Maybe it was angel Chris.)

Sunday Collin woke up and started vomiting again even with the suppositories that we had been giving him. I was so worried that we were going to go right back to the hospital. Collin’s dr. called to see how he was doing. I told her that he had been throwing up and that he just feel asleep. She was very worried also and said that if he continued when he woke up that he would have to go back. We were both hoping that after some sleep and letting his tummy rest he would wake a little better. Well, our prayers were answered Collin woke up and did not vomit any more. He did continue to have diarrhea but that was better than the vomiting. We started giving him one tsp. of Gatorade every five minutes. By mid afternoon we were all in tears just worried sick about Collin. Praying that he could fight it off. He is a very strong little boy!!! He is my hero. I don’t know anyone that could be in so much pain but still manage to smile and blow kisses to the nurse when we were leaving.

Collin is doing better. Today he has had about 2 1/2 jars of baby food which is not much but it is HUGE progress. Collin has lost about 1 ½ pounds. He does not have that to loose. He only weighs 23 pounds to start off with. Collin is not any where near where he needs to be but he is getting there slowly. He even let me put him down today. He got some sleep last night as well. That was well needed for all of us. Now they are wanting me to take Collin to an Endocrinologist doctor. I will let you know what happens with that.

Regan was as sweet as can to be to Collin all weekend. She kept touching his face and loving on him. Then she would come over and kiss him. It is amazing the unspoken understanding that they have. The past week they had been getting on each others nerves all of the time and pushing each other around. This weekend though it was amazing to see the love and concern that Regan had for her big brother. Today they watched blue’s clues together and sat on the ground next to each other. It was so sweet to see Collin touching Regan and Regan kissing Collin on the back. They had both missed each other very much.

I want to say a HUGE thank you to Nana, Grandpa, and Aunt Crystal. They looked after Regan all weekend and it was so nice to not have to worry about her. I knew that she was in good hands. She loved being spoiled by them!! Thank you Maria for letting me “cry on your shoulder”. Also, a huge thank you to all of you that have been praying for Collin. I know that all of our prayers were heard and answered. Please continue to pray for Collin. I would also like you to please pray for Sammy-Joe who is also sick. Please don’t forget Chris’ family in your prayers.

BIG HUGS,
Julie
(mommy)

Sunday, August 7, 2005 12:47 AM CDT

Well, we ended up in the hospital yesterday. Collin had to be hooked up to IV’s. After a while it perked him up. So, we left at about 1:00am. Needless to say we are all VERY tired. Things looked like they were under control with the suppository but Collin has been vomiting this morning. I hate this!!! He has already lost so much weight. I have a feeling that we will be back today. Jason is doing ok. He is having LOTS of back pain. It is hard because Collin is wanting to be held so much. I will update latter.

It is with a broken heart and lots of tears that I let you know that our very special warrior friend Chris earned her angel wings late last night. She is an inspiration to everyone. WE LOVE YOU!!! Please stop by and let her family know that you are thinking of them and praying for them. Thank you. Chris's Page

BIG HUGS,
Julie
(mommy)

Friday, August 5, 2005 7:15 PM CDT

UPDATE: Ok, so here is the latest update. Collin had a HORRIBLE night. We were up all night. Jason and I got maybe two hours of sleep. We just kept tag teaming and then when he would vomit (which was all of the time) We would both need to be there. One to comfort Collin and one to clean up the mess. He also started have diarrhea this morning as well. NOT GOOD. Basically anything that Collin tried to eat or drink came right back up or out. He could not even keep down his meds. I have him a suppository to try to help with the vomiting. Nope no luck. This morning first thing we took him into his doctor office to find out if we should take him to the hospital. They know how dangerous it can be to take Collin in. You see if Collin goes in with one thing he ALWAYS catches one or two other thing while we are there. His immune system is very weak as it is so when he is this sick he can not fight off anything.

The doctor looked at Collin and was concerned. Collin has lost almost a pound since we were there ten days ago. Considering that Collin only weighs 22 pounds that is a huge loss. He does not have anything to loose. They tried to cath him and get some urine but he was dry as a bone. Then we went to the lab to have his blood drawn. We went back to the doctor office and we could either wait there for several hours or go home and wait for a call to see if he needed to be admitted right away. We decided to take Collin back home.

The doctor called and said that his labs were ok. She said that if we could keep anything down him than we can stay out of the hospital. So, we have been taking droppers and forcing Collin to drink Gatorade. He is not happy about it but he needs to get something in him and milk is just making it worse. The doctor said that she would call back latter this evening to see how he is doing. Please pray that we can keep him out of the hospital. He always ends up very sick when we have to go in.


Hi.. this will most likely be a short one. I will update more latter. Things have been VERY hard around here today. I took Regan to the beach this morning while Nana watched Collin. When we got back Collin was not doing good at all. I could tell as soon as I saw him that he was having a VERY hard day. I held him in my lap and ate my lunch with in a minute he was asleep. I had to carry him upstairs and put him down. While I was laying down with him he kept crying out and tears came down his face. It breaks my heart that he is even in pain in his sleep.

After laying Collin down. I shortly after found out that Jason had been in a car wreck and was going to urgent care. Some guy swerved into Jason's lane in down town LA. Jason hit him becuase he had no where to go and then after hitting him his car pushed Jason into the curb. Needless to say Jason's car is not able to be driven. It had to be towed away. The cops showed up and took a report. They said that the other guy was at fault (of course!!) So, I was finally able to talk to Jason as he was coming back from LA. He was driving a rental and in LOTS of pain. He wanted me to go with him to the urgent care but since Collin was doing so bad I couldn't leave him.

Collin woke up shortly after and fought me like crazy. He head butted me three times and wanted me to walke around with him while he had a fit. It was just to much for my back. He has finally calmed down. His body temp. is up and he is pail. I just hope that we don't end up in the hospital. Collin just got donw vomiting all over the place. Please pray for him.

BIG HUGS,
Julie

(mommy)

Wednesday, August 3, 2005 3:54 PM CDT

Wow, where do I begin. Last night I was able to talk to Maria, Sammy-Joe’s mom on the phone. They live in Australia so of course we are unable to talk on the phone because it is to expensive. I “met” Maria through our TTD support group online. She has been such an amazing friend from day one. I feel so lucky to have her in my life. Anyways, I called her up last night and it was so fun to hear her sweet accent and finally be able to put a voice to her face. We talked for about an hour and a half about so many things. It was if we had been friends forever and we talked on the phone all of the time. It was so fun!! Sammy-Joe and Collin both have the photosensitive TTD. So, Maria and I have so many things in common. We both have to live our lives in the dark with our boys. It was great to talk to someone who knows exactly how I feel and goes through it on a daily basis with her sweet little boy. Sammy-Joe is sixteen and because he is so much older than Collin Maria is able to tell me where he was a certain stages and how to help him. It is a HUGE help. At times I get discouraged because Collin’s progress has been so slow but then I hear from Maria how Sammy-Joe didn’t talk until he was eight. It gives me hope for Collin. One of the high lights of our phone call was being able to hear Sammy-Joe. Oh, it was so amazing to hear his sweet voice and listen to him as he talked to his mom. It brings me so much hope for the future. Jason was jealous when I told him that he told me hi and I heard him talking. He made me promise to let him talk to him next time. LOL They are a WONDERFUL family. I feel so lucky to have them in my life. I just wish that we were not so far apart!! We love you all tons!!!!

I had a hard time falling asleep last night because I was so excited from our phone call. I had a dream about Sammy-Joe. We were meeting him over here in the US. Hopefully that will happen in a couple of years seeing as how they are going to try to come back. Please stop by Sammy-Joe’s Page and say hi!!! Sammy-Joe's Page
Last night both of the kids slept through the night!!! YEAHHH!! I kept waking up because I was afraid that something was wrong with Collin since he was not waking up. Isn’t it funny how that works. LOL

Yesterday was an OK day. I think that we might have done to much the day before so we spent most of the day resting. Collin got a very special book from Mrs. Pam in the mail. He LOVES it. THANK YOU so much. You are such a sweetheart. Last night we did have some fun outside. After the sun starts to go down and it is past our backyard I will let the kids go out back and play. Collin didn’t want to go in his walker he just wanted to be pulled in the wagon. I had turned the sprinkler on the water the grass. So, I pulled Collin and Regan through the water in the wagon. They both thought that it was so much fun. So, for the rest of the night Regan ran through the water and I pulled Collin through. We all had our cloths on and ended up getting soaked. It was so much fun.

Today we went to Aquarium of the Pacific with Great Grandma Jo and some of our friends. Merrily and her two boys met us at the aquarium. We had a lot of fun. I am grateful that Merrily has been so understanding of Collin and his illness. It is always wonderful when you have someone who has researched TTD or has really truly tried to understand what TTD is. It makes going places and doing things with them much easier. Thank you so much!! We had a blast today!!


Paul, Collin and Regan looking at all of the fish!!


Regan and Great Grandma Jo


Paul touching some of the fun stuff in the water!



All three of the kids saw something that they liked.


They have a part where you can go in and feed the birds. The birds came right up and landed on my hand
Then we fed them some food. Collin loved it!



Regan was not as sure as Collin at first.

Thank you as always for your love and support. Please keep our friend Chris in your prayers.
BIG HUGS,
Julie
(mommy)

Monday, August 1, 2005 8:47 PM CDT

Hi today has been a fun busy day. The kids are starting to get back their strength and want to go, go , go!!! This morning was a beautiful cloudy day. It was perfect for our little man. So, I put the kids in the wagon and we headed down to the park at about 7:00 am. They both were very happy to be there. We have not been able to go in a while because it has been to sunny.

Today is Angel Katelyn’s B-day. The kids and I had LOTS of fun doing stuff for her. The kids made her beautiful pictures and we went and got pink and purple balloons since that is her favorite color. We let go of the balloons and sent them to heaven so that Katelyn and all of her friends had them to play with. Please keep her mommy and daddy in your prayers. I am sure that today is a very emotional day for them. Please stop by and wish her a happy birthday Katelyn's Page


Collin and some of the balloons

Regan with some of the balloons.

This is a butterfly that Collin made for Katelyn.

This is a butterfly that Regan made for Katelyn. We attached the pictures to the balloons and sent them up
To our VERY special friend!!


After all of that fun and the kids had rested we went to the library. We got LOTS of books and even a wiggles DVD. Today has been a good day! YEAHHHH for good days.
BIG HUGS,
Julie
(mommy)

Sunday, July 31, 2005 9:28 PM CDT

This weekend went pretty well. The kids are still sick but are slowly getting better. We didn’t do much. We took it pretty easy so that they could get back to 100 percent. Neither of them have been sleeping very well. We did get a chance to go outside and play this evening when the sun was going down. I will attach some pictures of all of our fun. Tomorrow we are going to do something fun for our very special angel friend Katelyn. It is her birthday!! WE LOVE YOU GUYS!!! Visit Katelyn’s page. Katelyn's Page

Things are going pretty well just a lot of snot, tears, and sore throats and ears.Yesterday the kids got a package from our very special Hippie friends!! THANK YOU so much!!! Devin's Page We hope that all of our friends are doing well. We love you all so much!!!
BIG HUGS,
Julie
(mommy)
SINCE YOU ARE ALREADY HERE BE SURE TO SIGN THE GUEST BOOK PLEASE!~!

Please Keep Chris in your prayers she still needs them!!


Collin and Regan having fun in their wagon.


Collin LOVES the wagon!!!


Regan decided to sit in the moving dolly that we have. It was so funny!!


Regan giving herself a bath in the dog’s water! If you can’t tell she LOVES to be naked!


Collin and Daddy having fun in the ball pit!!

Friday, July 29, 2005 12:53 AM CDT

We are almost at 10,000 visitors!! If you are number 10,00 let us know so that we can send you a suprise!!

Hi, Not much has changed here. Just trying to keep two sick kids happy!!! Collin is such a trooper that he doesn’t complain to much during the day. I think he is just to used to not feeling well. Regan on the other hand is having a VERY hard time.

Yesterday was a CRAZY day. In the morning Collin was crawling (bunny hoping) and he feel. When he feel the nose piece on his glasses broke and scratched up his nose. I looked at him and there was just blood running down his face. He was not to upset. He has a VERY high pain tolerance. It is almost scary at times.


Collin’s Poor nose.

Anyways, back to the glasses. This pair was his back up pair that he wore before he got his last pair of glasses. Since his last pair broke we had to go with the back ups. I had been fighting with the insurance about his glasses. Finally I just decided to pay out of pocket and pray that they reimbursed me. Well, I am so glad that I did that. I had no idea what I was going to do with his spare being broken as well. Jason took some old nose pieces and put them on. It was not a great fit but it did ok. Thank goodness the dr.’s office called in the afternoon and said that Collin’s new glasses were ready!! YEAH!!! My prayers were answered. His poor little nose hurt and I know that it did not feel good to wear the old ones. Now I just have to pray that our insurance reimburses us the $300.00. Yeah, can you believe that. Because of Collin’s cataracts and severe blindness his lenses are $200.00!!! Crazy!!!


Collin’s Cool new glasses!!

Last night Collin and Regan were both up ALL night. Neither of them felt well at all. Regan is sleeping now and Collin is trying to pull me off of the computer. So, I will go for now. Please keep Collin and all his little friends in your prayers.


Here is a picture of Regan from last Friday when we went to the beach.

PLEASE SIGN THE GUESTBOOK. WE LOVE TO HEAR FROM YOU!!

BIG HUGS,
Julie
(mommy)


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Collin wanted to say hi!!!!

Please keep some of our friends in your prayers.

Like always Please, please pray for Chris. Chris's Page

Taryn had surgery yesterday. Taryn's Page

Sammy-Joe is still sick. Sammy-Joe's Page

Wednesday, July 27, 2005 9:49 PM CDT

Well, the past several days have been very busy. Lets see…. Monday I took the kids to the library in the morning. I thought that it was time for Collin to get his very own library card since he is a big five year old now. When I went to get his card the woman asked me if he could sign his name. I told her that he could not. Mind you Collin was in his wheel chair and it was pretty obvious that he could not sign his name. She told me that she wasn’t sure if she could give him a library card. So, then I asked her if they didn’t ever give library card to the disabled. She went and talked to the manager and then we were able to get Collin his very first library card!! How fun. We went home with lots of books.

Tuesday the kids woke up nice and early. I think that they know that if they don’t wake up early they don’t get to play outside. I will let them play out back if it is before 8:00am. Latter we went to the mall and went on the quarter machines. Both of the kids were having a hard time. I ended up taking Regan to the doctor at 4:30pm. She has a double ear infection and a bad cough. So, then we had to go and get her medicine. Last night Collin had a very hard time. He was up all night.

Today I took Collin to the doctor and he has an ear infection and fluid in his chest. The doctor was not as worried about the ear infection as he was the fluid. Since they can put him on antibiotics for his ear they are not concerned about that He is just concerned about his chest since there isn’t anything that they can do for it. So, we are going to have just keep a close eye on him.

As you can imagine it has been crazy around here. If it isn’t hard enough keeping two very active kids inside all day …. Try keeping to sick kids in all day!! NO FUN!!!

Please keep our friend Chris in your prayers. She needs LOTS of them right now. Chris's Page

Also, please keep our friend Kirk in your prayers. Kirk's Page


One more.. Please keep our dear sweet friends Sammy-Joe in your prayers. He has TTD just like Collin and is sick.
Sammy-Joe's Page
BIG HUGS,
Julie

Monday, July 25, 2005 3:10 PM CDT

Hi Everyone~
It has been a while sine my last update. Collin tends to be a computer hog. So, I often have a hard time getting on it. Friday was Collin’s last day at summer school. So, I decided to take Regan to the beach just us girls to enjoy our last sun day before bubba was home with us every day. Regan had a blast she is a VERY brave little girl! She just ran right into the water. Our fun was cut short though. I had to pick Collin up early from school. He was having hard day and in pain. I hated that he had to leave early on his last day. I know that he would have wanted to stay all day but he just didn’t feel up to it.

Saturday we went up to my mom’s house in Apple Valley and spent time with her. We went shopping and had lots of fun getting back to school cloths for the kids. The kids love going to see their Poppie!!

Yesterday we went to church and had a good day. When it was time to put Collin down he was not feeling well. He kept yelling in his sleep. It was obvious that something was hurting him. After we got both of the kids to sleep Jason and I watched a movie. In the movie that we were watching the boy had a very rare illness. At the end of the movie the boy could not fight any longer and went to Heaven. I looked over and Jason was crying. (Of course I was as well.) Then one of those moments came for Jason. I am sure you know what I am talking about. The moments when you watch a movie, go by a t-ball field, see a child running, or what ever it might be that day. Well, last night it was the movie for Jason. He kept telling me that he was not strong enough to loose Collin. He kept saying how he hopes that Collin can continue to fight for a long time. All I could do was hold him and cry with him. It breaks both of our hearts because we know that he is in so much pain every day but we don’t want to ever loose him. I started cleaning and was looking for Jason. Then I found him laying in Collin’s bed cuddling him with tears streaming down his face.

TTD is hard on all of us but most of all on Collin. It is a battle EVERY day to do every little thing. The simplest things drain all of his energy. He is also in pain all of the time. He is trapped inside and can not go out and play like he would like to. He is trapped in a body that will not let him communicate with us like he would like to. BUT Collin always has a smile on his face that would make anyone’s heart smile. He has a love for life that I can’t even describe in words. He takes in every moment as if it were the first time that he saw, touched, or experienced something.

TTD has taken so much from our entire family. I am tired from five years of sleepless nights, picking up, carrying, and bathing Collin all of the time. I can not go and do things as I please because often times it is to hot or to sunny to take Collin out. We don’t even have our own home. Because of all of the many medical experiences that Collin has had over the past five years.. Surgeries, wheel chair, hearing aids, diapers, dr. apts., prescriptions, glasses, contacts, and so much more. We have moved in with Jason’ parents this past year to pay off medical bills.

Now, any sane person might think wow they have it bad BUT I sure don’t think that. I think that we are the luckiest family in the world. We are blessed with two amazing children ! I am lucky that I can stay home and take care of Collin and lift, carry, and bath him even if it wears on me. We are blessed to have such wonderful family that would be willing to open their doors to us so that we can pay medical bills. WOW, if you ask me we sure are lucky!! All thought we might not have a big house or tons of money I feel like I am the richest person in the world. Why you ask… Well, I am able to stay home with Collin and make memories that will last a life time. I know that his time with me is limited and I would much rather give up worldly things to be able to add more wonderful family memories in my bank of happiness.

Thank you all of your love and support. We have made so many wonderful friends through CB. You have no idea how much each of you mean to me!!
BIG HUGS,
Julie
(mommy)

Thursday, July 21, 2005 10:53 PM CDT

Today was a good day!!!! This morning was Collin’s field trip. It was so much fun!!!! Collin loved being on the ice and having the cool air hitting him in the face. Spike, the mascot for the Long Beach Ice Dogs came to play with Collin and his friends. Collin LOVED Spike. Regan was afraid of him and kept telling him “no doggie…. No no” It was funny. Regan wanted to go out on the ice. So, bubba let her borrow his wheel chair and she went out on the ice too. We had so much fun!! It is nice to find things that Collin can do! It seems that so often we are surrounded by things that Collin can not do. So, it was nice to have all of the kids having a blast. A HUGE THANK YOU TO UNCLE BRYAN!! Uncle Bryan came to help this morning!! You were a BIG help!! We love you tons!!

















I want you all to please keep our cousin’s family in your prayers. Jason’s cousin took her husband in for surgery on Monday. They were planning on removing his testicle and after doing so they found out that it indeed has testicular cancer. So, he will be starting treatment soon. They have two small children around Collin and Regan’s age. I know that it will be hard on all of them! We love you all so much!! We look forward to taking the kids for LOTS of play dates!!

Please also keep Chris in your prayers.

Thank you all for your love and support!! We love you all VERY much!! Hey, since your already here be sure to sign the guest book!!!

BIG HUGS,
Julie
(mommy)

Wednesday, July 20, 2005 4:51 PM CDT

Hi Everyone~
Sorry it has been a bit since my last update. Collin is doing much better!! YEAHHH!!! For good days!! Thank you all so much for your support and sweet messages that you all left. It means so much to our little family. I haven’t written just because it has been crazy like always. Trying to get Collin’s new glasses taken care of, catching up on shopping, cleaning, you know the usual. Collin’s toe is doing much better!!! He walking and you would not even know that anything happened to it. Collin’s teacher is very sweet and felt VERY bad about it. He is such a little champ!!!

We have been keeping Collin inside all of the time. It is driving him nuts!! Yesterday I let him go out after five at night. The sun was not on our back yard any longer. He was soooo happy to be outside. Today I let him wear shorts to school because it was so hot. So, I drove him to school and drove to pick him up. I know this sounds silly since we only live a street away from the school but I didn’t want to take any chances! His teacher has been good about keeping him inside.

Today Collin got a VERY special package in the mail from Miss Kari and her sweet family. THANK YOU so much!!! That was so sweet of you! Collin loved the crab the most. I think it is one of his baby Einstein movies. LOL Regan loves her cup. She would not let me take it away from her. Thank you bunches!!

Thank you for all of the cool stuff!!!

We are just trying to stay cool and trying to keep Collin healthy and out of the sun. It is not easy to make a five year old little boy happy when he has his heart set on going “out”. It is so fun when we do go out though. He does not take one thing for granted. He wants to touch everything that he sees. He loves to look at everything. It is as if he were seeing it all for the very fist time. It is so fun to see things through his eyes sometimes. It teaches me to appreciate EVERYTHING!!!

Thank you again to all of you that have been such a HUGE support. You have no idea how much we love you!!!!

Please keep our friend Chris in your prayers.

**BIG HUGS**
Julie
(one happy mommy)


Collin playing at school today!



Collin and his buddy at school. How sweet is that !!!


Regan trying to get all of the balls in Collin’s classroom.



Regan enjoying her time in the sun!


Collin and Regan enjoying their new balls from Kari and her family. They made a fun game. GET THE TV!!

Sunday, July 17, 2005 10:31 PM CDT

WOW, talk about a hard weekend. Friday went ok. Collin was still in pain. More than anything he was just frustrated that he was stuck inside and I wouldn’t let him do much on his foot. His teacher called to check on him and she felt VERY bad. I am not mad at her I understand that things happen sometimes. I just wishe the school districts were not forcing the teachers and aids to work in such hard settings. It is not fair to the children. This next week is Collin’s last week of summer school and I am going to let him go if he feels well. Then he will have six weeks off.

Collin did not sleep well at all any night this weekend!! Yesterday I took pity on him and took him “out”. I took him on a Mommy and Collin date. We went to one of his favorite stores. … Barnes and Noble. Yes, a five year old who would much rather go to Barnes and Noble than toys R us. Collin LOVES books. He has so many books that he has had forever. He kisses them and loves on them. He pushes them around the house to show them things. He loves to be read to. His books are his friends. When we were there we found a touch and feel book just like one of his at home that was falling apart. He got so happy to see it! He kissed it and would not let go of it. He didn’t not even want to hand it over to pay. He is such a sweet heart. Then Regan and Collin spent the afternoon with Nana and Aunt Crystal so that Jason and I could go out on a date. They had LOTS of fun with them.

Well, today was so hard!!! The day started out great. We went to church and had a wonderful morning. Collin even walked on his foot with his walker. Than we came home and Regan wanted to go outside and play in her little swimming pool. I got her all ready and she had a blast. I brought Collin over and let him watch Regan from his wheel chair in the shade. He seemed to be having fun. It was a very hot day. Well, I made a HUGE mistake!!! Boy, I feel like just beating myself up!! Latter in the afternoon. Collin started to wine and complain. I looked over and he was lying on his back vomiting. I ran over and hurried up and turned him over so that he would not choke. After that it just went down hill. I put him in the bath to clean him up and tried to calm him down. It didn’t work. So, then I cuddled Collin wrapped in a towel and he fell asleep in my arms with in seconds. His eyes just rolled up in the back of his head and he fell asleep. He would wake up every once and a while and cry. I would have to walk around or rock him back to sleep. It just broke my heart. I was so afraid that we were going to end up in the hospital AGAIN. After Collin woke up the last time we were able to get a little food in him but he still was not feeling well. He went to bed early tonight. I am hoping that he will be able to get a good nights sleep and let his body heal. The sun is so mean to him. Mr. Sun bullies Collin and picks on him all of the time. Collin is just a little boy that wants to be “out” and play like the other kids but if he does this happens to him!!!!

Please pray for my little man that he feels better tomorrow. Thank you all for your love and support.
BIG HUGS,
Julie
(a heart broken mommy)

Here are some pictures from our good part of the day….

Thursday, July 14, 2005 10:34 PM CDT

Well, lets see.. How do I describe today? Hectic, crazy, and very scary! Collin had a hard night last night but woke up in a pretty good mood. Regan and I took him to school and then we were on the run. We had LOTS of errands to run today. We were out until it was time to pick up bubba from school. Regan and I always show up about 20 minutes early or so to make it easier on them. They have to take a lot of the kids out to the bus. So, I go and get Collin to help them out. Today Collin was at adaptive PE when Regan and I got there. Regan took off and starting playing. Mr. Bill was trying to get Collin to walk along the parallel bars and he would not walk on one of his feet. I thought that it was very odd. He didn’t act like he was in to much pain but he would not walk on it. Soon after it was time to go home. Collin cried tears the entire way home. This was so unlike him and it made me nervous. So, as soon as got in the house I was pulling up his pant leg to see if there was something wrong with his leg. His leg looked fine. Then I took off his shoe and his big toe looked awful. I was so scared when I saw it. It looked like it was broken. I called my mother-in-law into the kitchen and she agreed that something was VERY wrong. So, I took him right away to the urgent care. While I was driving over there I called the school to find out what happened at school today!!!!!! His teacher told me that nothing happened. TRUST ME THAT WAS NOT NOTHING!!!!! We had problems at urgent care. They told me that we had an outstanding bill from the last time. WHAT!!! We have insurance that covers it 100percent and all we have to do is pay a $15.00 co-pay. I waited for 30mins to see if they could figure it out. Well then they came back to me and told me that Collin could not be seen until it was resolved. I could either pay the 200 , that I didn’t owe, or could call my insurance and their billing office on their phone. I WAS TICKED!!! I didn’t want to sit there forever doing their job!!! So, I turned around and walked out. I called Jason’s foot doctor and asked if he could see Collin. He said yes bring him in right away. He looked at Collin’s foot. Luckily it was not broken but it had a contusion and a possible fracture. Ok, so someone had to drop something on his foot or run over it with something like a wheel chair. I am not sure what I am going to do about this. I have been upset with the district from day one but now because of there over crowding something could have happened to Collin that could have been prevented.

He can not wear his shoes because it hurts to bad. When his shoe is not on he does much better. He is having a hard time walking on that foot. He is such a trooper though! I took him to the mall this evening to get him “out” and to buy him a pair of opened toe sandals to wear this weekend. He will definitely not being going to school tomorrow.

Well, I guess that is it for now. I am so tired. It has been such a long day!!! Please pray for my sweet little boy. Also, please pray for Chris. I am sorry that I have not been able to sign guest books in a bit but it has been VERY hard around here lately.

Thank you tons!!!
BIG HUGS,
Julie
(mommy)

Wednesday, July 13, 2005 2:54 PM CDT

Hi Everyone~
Collin had a pretty good day yesterday. This summer we have not let him outside much at all. It is driving him crazy but health wise he is doing better than he has ever done in summer. Yesterday he was not 100 percent but some help from a little bit of meds. Got him feeling better right away. Oh, I love his smile. It could light up a city!!! When he is in a good mood it just makes my world. He had a good day at school and then when he got home him and Regan had LOTS of fun playing. I love that he is starting to get social with her and other children.

So, the summer program that I was hoping that I could Collin into didn’t happen. I think that I know what I am going to have to do. I am most likely going to have to pay to bring him to gymboree and stay with him and find someone to watch Regan. It is going to be crazy but he will need something and with him not being able to go “out” our options are limited.

Today has been yet another crazy day. I took Collin to school and Regan got to play with Nana again this morning. I went over and cleaned Great Grandma Jo’s house for her. She is getting to old to push the vacuum or do things like that. So, I go over once a month and help her out. Latter today I have to take a dinner to a woman in my PTA. She moved here shortly before the school year ended. She went in for surgery on her neck on Monday and I offered to bring her and her family dinner tonight. So, one more thing to do!!! I hope that all of our friends are doing good. We love you all so much!!!

Please keep our warrior friend Chris in your prayers.

Also, YEAHHHH Amy on the good news!!!!!
BIG HUGS,
Julie
(mommy)



Collin in his tent and playing one of his favorite b-day gifts… his guitar.



Collin and Regan playing our ball pit in the living Room.




My little dare devil!!


Ok, so I thought that the day was going good. I got a call from Collin’s school telling me that he had a good morning but that he was not doing good. He was itching and in pain. So, I went and picked him up from school. He was so miserable!! When we got home I gave him some of his meds. His body temp was high so I turned the AC on and put cold wet cloths on him. His nose began to bleed but I was able to keep that under control. The summer is so hard on his little body. It takes everything out of him and he doesn’t have much to start with. He is such a trooper though. Boy, I sure do love him. Regan is being very sweet to him. It is funny how she always knows when bubba doesn’t feel good. I have the best kids!!

Monday, July 11, 2005 10:40 PM CDT

Hi Everyone~
The past two days have been much better!! YEAH!!! Yesterday we woke up and went to church. As usual Collin LOVED being at church. He loves to run around in his walker. All of the children are so sweet to him there. Regan got to spend some special time with her daddy and I taught my Sunday school class. It is so fun to see five year olds respond to certain things. They are so inicent and cute. Our lesson was about teaching others about Jesus and how we can be a good examples by living like Jesus. It is amazing the love and understanding that such young children have for Jesus.

When we got home Regan crashed and Collin was in a good mood. Shortly after he started to hurt so I had to give him some meds but for the most part he had a pretty good day. Regan and I had fun latter in the day. (Collin wasn’t 100o he stayed home with daddy) We took one of our good friends and the children’s adopted grandma some Birthday cookies and beautiful pictures that the kids made for her. We also brought her a crown that I insisted she put on. Regan snatched it away and proved yet again that she is a DIVA!!! We love you Pat!!! Happy Birthday!!!

Sunday night Jason, Collin, Regan and I all got in our ball pit and had a blast!!! Both of the kids were so happy to have mommy and daddy both in there playing with them!!! I love those special moments!

Today has been a pretty good day. Collin and Regan woke up in pretty good moods. I got them both ready and Regan got to spend the morning with Nana and Collin went to school. I had to go to the Social Security Office to try to get some of Collin’s services reinstated. It is so nerve racking sometimes. All of these systems have been set up to help us but they can be so difficult to receive. I was there for over two hours. Luckily this trip was successful. I had a great book to read and the time went by pretty fast. (well as fast as two hours at the social security office can go)

When I picked Collin up from school they said that he had been itchy and a little uncomfortable but like usual he was a big trooper. I don’t know what I am going to do this week. I always send Collin to school in pants because of the sun. Well, this week it is supposed to be up in the 90’s and his class room does not have AC or even a fan. So, I might have to put him in shorts but I am afraid of what might happen. I can’t win for loosen!!

This evening was good. Aunt Crystal and I took Collin and Regan to look at eye glasses and then over to the mall to ride on the quarter rides. The glasses that we were planning on getting for Collin only come in pink or purple in his size!!! YIKES!! No thank you. So, we are going to have to figure something else out. I am still fighting with the insurance. I am also trying to get Collin into a summer work shop for the six weeks that he will be out of school. He will go crazy if he does not have something to do every day. So, please pray that it works out.

Thank you Mrs. Pam for Collin’s card today! You are such a sweet heart! We sure hope that you are having fun with our Utah friends!

Like always please keep our dear friend Chris in your prayers.

Also, please keep our good friend Caden in your prayers. He is a very sweet little boy and we love him lots!
Caden's Page

I will leave you with a quote that I love from batman (yes I said batman) “ Why do we fall…. So we can pick ourselves up”

BIG HUGS,
Julie
(mommy)

Saturday, July 9, 2005 9:26 PM CDT

Hi everyone~
I wish that I could say that our weekend has been as good as the week but that is not the case. Yesterday Collin was not feeling well at all! He was crying and clingy all day. He was in so much pain. To make matters worse Regan has been very moody (to put it nice) with her teething. She is in a lot of pain also. I don’t know if Collin just did to much over the week or what but he just doesn’t feel well. It was very sweet last night Collin was crying and Regan got Collin’s new book and brought it over to him. She was trying to comfort him and cheer him up. It worked …well for a minute anyways.

All afternoon I was fighting with the insurance company. Collin needs to have his chair adjusted but of course there isn't anyone in network that will work on Ped. wheel chairs. Also we need to get him new glasses and the doctor's office is giving us a hard time because the insurance still has not paid them out for the last pair. So they want us to pay out of pocket. Then we just have to hope and pray that the insurance company will pay us back. So, I was trying to get them to send me something saying that they would pay us back in full if we paid for them out of pocket. Why is it always so hard to try to get things done for our children???

Last night was awful!!! Regan was up with her teeth hurting her. I cuddled her and got her back to sleep. Collin was up in pain so Jason took the first shift. Around 3:30am it was my turn and I laid with him until time to wake up. I have bruises all on the inside of the thighs from him. I have to hold him and try to comfort him and keep him from hurting himself. Often times he will rub his feet on me or kick. I bruise very easy because of my anemia. So, if you saw my legs you would think someone beat me. I guess it is just part of the job.

This morning we woke up to a nice cloudy day. I took the kids out to play in the backyard. Then we went for a walk down to the park so that they could go on the swings. Mr. Sun started to peek through the clouds so we had to head back home. Regan was not happy about that one bit. Collin was fine just sitting in the stroller. Ok, so I don’t have these moments often but from time to time something will happen that makes me a little sad. Today when we were at the park there were a lot of little kids playing t-ball. I watched all of them having lots of fun. I couldn’t help but wonder if Collin were healthy would he be out there with them. As a mother of course you want the best for you child. Well, Collin is living the very best life that he can live. At times it might seem unfair or even heart breaking to watch him go through so much BUT he is an amazing child. I know that he might not play t-ball like all of the other children on the teams but every day he strives to be the best that he can be! He truly is my hero.

Jason and I got away for a while this afternoon. Nana watched the kids and even took them to the mall to ride the ponies. WOW what a good Nana!! Jason and I needed to get away and get some alone time for a bit. When we got home I could tell that Collin was still not feeling well. He fell asleep tonight at 6:45pm. That should tell you right there how awful he felt. I always worry when we have a lot of good days. I just know that the bad ones are coming and when they do they hit hard.

Thank you all for your love and support! We are so grateful for all of you. Please be sure to sign the guest book. Collin likes to look at them and I will read them to him.

OH!!! A HUGE thank you to Valerie for the sweet DVD that you sent to Collin. We got it today! I can tell that you put a lot of thought into picking it out. We love for the kids to watch movies about Jesus. Thank you!!!!

Please continue to keep our very special friend Chris in your prayers. We love her lots!!! Please stop by and sign her guest book. Chris's Page

BIG HUGS,
Julie
(mommy)

Friday, July 8, 2005 11:44 AM CDT

HAPPY FRIDAY!!!!!!
Hi Everyone~

I want to start today with a quote that is on one of our friend’s pages. “If you change the way you look at things…….. The things you look at change.” This has really meant a lot to me lately.

Things here have been going really good!!! I can’t even believe it myself. Collin is doing very well for it being summer time. He is in pain from time to time but for the most part he is doing GREAT!! His last change in medicines really helped!! Ok, lets see what can I update you on. Summer school is going well for Collin. He is doing much better with his new teacher and friends. He is still having LOTS of fun with all of his Birthday stuff. Yesterday we went to the store and he picked out two things. A book that he used to have a long time ago. It was so funny when he saw the book he got so excited and kept kissing it and loving it. It was as if he were saying hi to an old friend. It was sweet He also got a Power Ranger play tent. When we got home and put it up Regan and Collin played in it until it was time to go to bed. It was nice to see them playing to well together.

Yesterday I took Regan to the park for a play date. We stayed there for about an hour and a half and then it was time to pick up Collin from school. Regan did not want to leave. She had LOTS of fun!!! When we picked Collin up from school his adaptive PE teacher told me that he is going to take some of the students on a field trip next week and wondered if Collin and I would come. They are going to the ice skating rink. They will let the kids on the ice in their wheel chairs!! How fun is that!! I don’t ice skate but Jason does so we are going to go as a family and have fun with bubba!!!

Yesterday I spoke with Amy, Lily’s mom, on the phone. She was given some no so great results from one of Lily’s tests. Please keep their sweet little family in your prayers. Lily's Page

Also, our friend Chris is still having a hard time PLEASE, PLEASE, PLEASE stop by and leave some encouraging words for her. Please pray for her and her family. Chris's Page

Thank you all so much for all of your birthday wishes for Collin. We are so grateful for all of the wonderful friends that we have made through caring bridge. If it were not for Caring Bridge I would not know many of you and have so much overwhelming support. We love you all very much!!! We hope that you have a GREAT weekend!!!

BIG HUGS,
Julie
(mommy)

Here are some pictures from last week to enjoy!


Collin and Daddy on Dumbo!!!



Collin with his presents from our Utah CB friends!!



Collin would not wear his Birthday crown BUT Regan had no problem wearing it all day!!LOL

Tuesday, July 5, 2005 9:59 PM CDT

Hi Everyone!
Collin’s B-day was WONDERFUL!!!! YEAHHH!!!! Every Birthday I can’t help but think how wonderful it is to have another year with him. Each year that passes is truly a blessing from God. This is the first year that he didn’t start crying or have a hard time. He had a GREAT day!!! We woke up and went to church where the boy scouts were having a pancake breakfast to raise money. It was fun and Collin just loved being “out” he was all over the place in his walker!! Then we went home and rested for a bit. After that we were off the Chuck E Chesses for Collin’s B-day party. It was sooooo much fun! Collin had a blast and so did all of the other kids. I think that the adults had just as much fun! One of the high lights of the day was meeting our CB friend Taryn . She looks cute in her pictures but let me tell you she is so adorable. She smiles all of the time and her little smile could light up a room!!! Collin got LOTS of cool stuff and was just happy to be “out” with all of his friends!! We did fireworks latter in the day but Collin did not last that long. He fell asleep before we started. He had a long fun day so I don’t blame him for crashing at 7:30.

Ok, so I have a TON of thank yous. A HUGE thank you to Nana and Grandpa and Maw and Paw who helped pay for Collin’s very fun party at Chuck E Cheese’s. A HUGE thank you to our new friends E.J., Debbie, Jayde, Austyn, Taryn, and Payton for coming all the way to Collin’s B-day party and for the sweet gift! It was so wonderful meeting all of you and we can’t wait to see you all again. A BIG thank you to all of our friends that came to Collin’s B-day party Caleb, Cody, Riley, Jeri, Jim, Kian, Paris, Paul, Lauria Rose, Aunt Sue and Uncle Gordon, Great Grandma Jo, Aunt Leslie, and Uncle Jared, and Aunt Crystal. We are so grateful to all of you for coming and having LOTS of fun with us. Collin loves all of the wonderful gifts!
I also want to thank Devin , Kara, Alisa, and Randy for Collin’s present. You are so sweet to our family! A BIG thank you to all of you that sent cards… The M’ family, Mrs. Pam, Tina and Lance,Alex, Gramma Giraffe, Dr. Dunn, and Kim!!!

WOW that was a lot of thank yous! You all mean so much to us and we are so grateful to have each and everyone of you in our lives!!!

BIG HUGS,
Julie
(mommy)
Here are some pictures from the party to enjoy!!!



Collin and Chuck E. Cheese!!



Look at that birthday cake!!!


WOW what a cool present!!


Collin taking Regan for a ride in a BIG truck!


Collin and Taryn!!!

Sunday, July 3, 2005 2:53 PM CDT

Happy Birthday Little Man!!!!
Dear Collin~
Wow, you are already going to be five years old!!! I remember the day when I didn’t think that you would make it this far. When I was able to hold you for the first time I did not want to put you down. I still fill that way sometimes now. I want to protect you and make everything better BUT you are getting to be a big boy and want to do things on your own. We were told that you would not be able to do much but you had different plans. Your determination inspires everyone that you meet. You are such an inspiration to me. You have taught me so much in your little life. You have taught me how to love purely, how to forgive others, and how to endure. You are the strongest little boy that I know. I know that you are in in pain all of the time but you still put a smile on your face and love life! I am such a lucky mommy!!!! Daddy, Regan, and I all love you so much and are so grateful for the sunshine that you bring into our lives. You are my HERO!!! I love you so much!!!!
Failure is not an option! On a mission to find a cure for TTD!!!!
Love for all eternity,
Mommy

Thursday, June 30, 2005 7:45 PM CDT

Hi Everyone~
I am so happy to say that today was another good day!!!! Collin woke up in a good mood and has been that way ever since. The pain level has not been that high today!!! YEAHHHHHH!!! More good news… we found out that our CB friend Taryn and her family are going to come to Collin’s B-Day party on Monday!!! We are so excited to meet them. Taryn is a cutie!!! Please stop by and say hi to her and her family!!
Taryn's Page

This afternoon it was so sweet. I was working with Collin on his walking and every time he would take steps Regan would clap and say yeah!! They are so sweet together. I know that this is short and sweet but here are some pictures that I took today enjoy…..







Collin and Regan looking at books together!


Collin was holding Regan’s hand!!! How sweet is that!!!

BIG HUGS,
Julie
(mommy)

Wednesday, June 29, 2005 11:20 PM CDT

Dear Lily~
I just wanted to tell you thank you for my B-day present. You are such a good friend. I am so happy that I met you. Well, kinda…….. Some day!!! I want you to know that even though you don’t have hair I think that you are beautiful!!!! You are perfect in every way to me!!!! I know that I might not be able to sing you a song because I can’t say many words, or write you a poem because my hands don’t work to well, or buy you some fancy present well because I’m just a kid BUT one thing I can do really well is LOVE. I love you so much! My mommy says that I can’t have a girlfriend so we just wont tell her ok.
Love for all eternity,
Collin

Me with all of my cool stuff from Lily and her family!!


Ok, so today has bee a GREAT day!!! I am so excited to say that because they seem to be few and far between lately. Collin didn’t sleep to well and he woke up in an awful mood this morning. So, of course I thought that it was going to be a bad day. Well, he proved me VERY wrong. I got the two of them ready and Regan and I took Collin to school. As soon as we dropped Collin off I took Regan to the doctor for her one year well check. I know we are two months late BUT I didn’t want to take her to get her vaccines until she was 100%. When she turned one she was a little under the weather. Anyways, Regan looks great. The doctor kept saying how smart she is. She was saying that she is truly advanced for her age. This was something different for me to hear. Regan weighed in at 22 pounds (the same as her BIG brother) LOL When it came time for shots of course she was not happy. I tried to get her to say bye to the nurse and should would not say bye. The nurse made a comment about her being mad at her and I said oh no she wouldn’t be mad at you. When we were in the hall she saw the nurse and looked at her and said “no no” she even shook her finger at her.

I picked Collin up from school and to my surprise they told me that Collin had a wonderful day at school today. The teacher kept telling me how bright Collin is. It is so fun when people get to know Collin. I think at first glance they think oh this boy is very severe but then when they get to know him they realize that he is very smart but he is trapped in a body that will not let him do what he wants to do or say what he wants to say.

When we got home Regan went down for a nap and Collin and I had some one on one time which is always nice. I LOVE it when I get to spend time with Regan or Collin just one on one. We got to cuddle and play. When Regan woke up we were off to the Doctor to take Collin in for his treatment. He is such a trooper and LOVES Dr. Dunn!!! I am so glad that we found her…. Well, I guess she found us. (It’s a long story) After we went to the dr. we went to grandma Pat’s house. Pat is a good friend of the family. She has three children and two of them are handicap. They are both older and she has taken me under her wing and given me so much support. We are all grateful to have her, Jeri, and Jim in our lives. They are a very special family.

I guess that is it for now. Thank you all for your love and support!!! A HUGE thank you to Lily and her sweet family for Collin’s b-day present also to Kari for Collin’s postcard he loved it!!!

BIG HUGS,
Julie
(mommy)

Wednesday, June 29, 2005 0:05 AM CDT

Well, today has been a hard one! Where do I begin???? Collin did not sleep well last night. He was in a lot of pain. He woke up this morning and was in a pretty good mood. Regan woke up ready for the day as well. I got them both up fed and dressed. Then it came time to take Collin to school. Regan did not want to walk Collin over so I had to hold her and push Collin. He seemed pretty happy to be there. I talked the teacher for a bit and went over more stuff that I had forgotten to tell yesterday. When Regan and I got home I put her in her little car and we went for about a mile walk. We got home and Regan was a bear!!! Her teeth are driving her and me CRAZY!!!! Shortly after I got a call from Collin’s school telling me that he is itching and they were not sure what to do. So, I took some meds over there and gave them to him. When I left he seemed to be in good spirits. It is so hard because the new staff does not know Collin yet and do not understand TTD or what Collin goes through on a daily basis. I got home and hopped in the shower and tried to get things done. Not long after I got another call from Collin’s school. His teacher was asking me how bad the itching had to be before I would pick him up. I tried to explain to her that if she distracted him with something else he will typically stop. I didn’t feel well after getting off the phone with her. So, I pulled my hair back, got Regan, and headed out the door AGAIN. Regan and I stuck around for a while to watch and try to help them out. I know it is VERY hard for Collin because he is in a new environment and that fact the his was itching didn’t help. It is moments like this that his autism really shines through. Collin’s OT showed up to work with him. She took him out of the class to give him a break. I took Regan and went home. I was able to feed her lunch and then it was time to go and pick him up from school. I got Regan and we showed up a little early. They were having their adaptive PE. Collin knows Mr. Bill (his P.E. teacher) and was having fun!! It was nice to see that. It is so hard for me because I keep worrying whether or not I have made the right decision with his school. I know that this will work but it will just take time for everyone.

The rest of the day went pretty well. Regan was VERY clingy and well to be honest down right nasty. She would pull my hair and just get mad at me if I didn’t hold her or do what she wanted. GRRRR…. I know that she does not feel well but boy I hope those teeth come in soon. Collin was very happy to be home and around familiar things. He is such a sweet heart! Please pray that he will do well in this new class. I know that it is only for four weeks but he needs to stay in school so badly.

Thank you all for your support. PLEASE PLEASE pray for our friend Chris. She needs us all to storm heaven with prayers for her.

BIG HUGS,
Julie
(mommy)

Monday, June 27, 2005 10:14 PM CDT

First off let me start by saying a HUGE thank you to Rose for making these beautiful caps for Collin and Regan. I know that it must have taken you a lot of time! You are a very sweet girl!! The kids LOVE them. THANK YOU!!!




Well, today has gone pretty good. I took Collin to school this morning and prayed for the best. As soon as I got there they told me that Collin had been transferred to a different room. I was shocked! What do you mean a different room? This has been Collin’s room for two years. The class next door has smaller children that are not as mobile and rough. So, instead of solving the problem with Collin’s class they shipped him to a different one. I went and stayed in the class with him for a bit. I was SOOOO nervous leaving him in a different room, with different people, and different kids. I finally left and worried all day. When I went to pick Collin up from school he seemed pretty out of sorts. I think that it is going to take him some time to get used to new people. They also told me that Collin went pee pee on the potty. WHAT?????? They put Collin on a supportive potty and he went pee. Now that I am home I am just wondering how long he was left on the potty. I will have to ask tomorrow. I think that this new class is going to work. Jason made fun of me because I was worried about EVERYTHING!!! Well, I’m the mom and that’s my job!!!!!

Later in the day we met up with great grandma Jo and we went and picked out new shoes for Collin. Great Grandma Jo got them for Collin for his B-Day! After shoe shopping we went over to Chuck-E-Cheeses to check on some things and ask a couple of questions. Grandma and I let the kids play a bit. It was so much fun to see the kids so excited, especially Collin. He has not had fun at ANY of his B-day parties. I know that this one will be different. When we went to leave he got so mad!! He cried and when we were in the car he just kept reaching for the building.

Here are some pictures from last week… enjoy….

This is a picture of Collin and his buddy Nolen. Collin is 4 month OLDER than Nolen!!!! WOW Collin is tiny!!!!


This was a picture from the zoo. Collin was not feeling well. We left shortly after this picture.


DIVA!!!!

We hope that all of our friends are having a good week! Thank you for your love and support. Be sure to sign Collin’s guest book!!!! Thanks!!
BIG HUGS,
Julie
(mommy)

Sunday, June 26, 2005 10:17 PM CDT

“Feed your faith and your doubt will starve to death” author unknown

I thought that I would start with that quote today. It has been a VERY trying week this past week. It seemed as if there was something that could have gone wrong it did. Collin was not feeling well, we were having problems with his school, money is low, problems with SSI and IHSS. Oh goodness I felt as if one more thing happened I was going to break. The thing is that I was going about it all the wrong way. Although all of our problems have not been solved I have faith that it will all work out. I have to put my faith in God and trust in his will.

“ God promises a safe landing, not a calm passage. If God brings you to it, he will bring you through it” author unknown.

Well, this weekend has been very uneventful. Collin has not been feeling very well lately so we stayed home all weekend. I even stayed home with Collin and Regan today and we were unable to go to church. Collin did seem to be very happy today. Collin and Regan have been so sweet to each other all weekend. Yesterday I looked over and they were holding hands. It was very sweet!

Things are pretty calm right now. I am starting to get ready for Collin’s B-day!! I can’t believe that he is going to be five years old!! WOW!!! Tomorrow I am going to take Collin back to school and see if anything has changed. I pray that they have. Collin needs to be at school and he needs his therapy.

Thank you all for your love and support!!!!! Please keep our friend Chris in your prayers.

BIG HUGS,
Julie
(mommy)

Friday, June 24, 2005 8:49 PM CDT

THANK YOU ALL FOR YOUR PRAYERS!!!!! The new meds and upping the dose on his sedatives is working. Collin was able to get some sleep YEAHHHHHH!!!! It was so needed! It had been over a week that Collin had an ok nights sleep.

As far as the school situation I wish that I could say that it was just as good. I took Collin back to school yesterday to see if anything had changed and it had not. So, I took him home. Then I started calling people from the district. I also decided that I would just have to keep Collin home this summer. I Called several different therapy centers to see if I could get Collin in for his PT, OT, and speech over the summer. Well, of course all of them have a VERY long waiting list!!!! Ok, so what do I do? I can't have Collin home all summer. He needs to be getting therapy and get "out".I kept him home today and didn't even bother taking him and making him mad when we would have to leave. So, I called up different district people and left messages letting them know that I was contacting our local paper to inform them of what was going on at Collin's school. Believe it or not they called me back this time. They were even nice. It was one of the women that I talked to the other day. She was willing to try to work things out wether that ment taking kids out or putting more aids in. YEAHHHHHH!!!!!! I won or at least I think I won. We will just have to see what happens on Monday.

Collin had a very hard day today. He just was not feeling 100%. I am hoping that we can do something this weekend. He needs something to lift his spirits. He has been traped at home with Regan and I all week. Maybe we will go to the Mall and ride the quarter machines who knows.

Thank you all again for your love and support. It means so much to me and our family.
BIG HUGS,
Julie
(mommy)

Wednesday, June 22, 2005 10:22 PM CDT

I wish that I could report that things are better but they are not. I was woken by a restless little boy this morning. After a VERY long and hard night I woke up to Collin tossing and turning. When I looked at him he had his eyes closed and tears were coming down his face. It broke my heart. It still breaks my hear to think about him being in so much pain.

Today was Collin's first day of summer school. Like I mentioned before I found out that they planned on putting 18 kids on Collin's class with only one teacher and three aids!!! CRAZY!!!! So, I got a sitter for Regan and took Collin to school planning on staying with him all day to see what it was like. Well, the other kids from the other school started to show up and boy let me tell you. I have no idea what they were thinking when they put these two classes together!!!!!!! The other class were big kids 5,6, and older. They were very high functioning and could walk and do most things on their own. They were stepping on the "babies" (that is what Collin's class is called because they are all so small). That is not even the worst part two of the children were pushing and hitting these little kids that could not defend themselves and then one of them was picking up everything and throwing it at the kids. After Collin was hit with a toy I had enough!!!! I took Collin down to the office and told them that I was taking him home and that classe was VERY unsafe!!!!!! There were two district women there and they had an oh well attitude about it. They did say that they would look into it. What ever that means!!! I will go back tomorrow to see if they changed anything. If not Collin will not be going to summer school!!!!!!!

I took Collin to the doctor this afternoon. The doctor gave me a new rx for a steroid for Collin. Also his neurologist said that we could up his sedatives. Hopefully this will help him sleep.

A HUGE thank you to all of you that are praying for my little boy!!!!!
BIG HUGS,
Julie
(mommy)

Tuesday, June 21, 2005 11:01 PM CDT

This is going to be a quick update. Collin is not doing well. It has been a VERY VERY hard past couple of days. Collin has not been able to sleep much at all. He is in so much pain. His body is hurting and his heart is breaking becuase he is stuck inside. We tried to go to the zoo with some of our friends today but it was to much. So, we were there for only an hour and then we were on our way home. my heart is breaking for him. I can't do anything to make him feel better. PLEASE pray for my little boy.
BIG HUGS,
Julie
(mommy)
Ok, so it is only 9:30pm and Collin has already woken up in pain. Jason and I heard a noise and went into check on him and he was banging his head against the head board in his sleep. He is in so much pain!!! I can't stand it!!!!!!!!!!!!!!!!! Jason is trying to comfort him right now. Please pray for him.

Sunday, June 19, 2005 10:18 PM CDT

HAPPY FATHERS DAY!!!

Let me start off by telling you about three special fathers that I have in my life!! Well, I will start with my own BIG BAD DAD!!!! My dad is a wonderful man that has been there for me so much through all of our hard times with Collin. My dad lives in Texas. When Collin was only a couple of days old and we were not sure what the future held for him my dad hopped on a plane right away!!! He flew out for Collin’s first four surgeries. Not so much for Collin but for me. When he could not come out one time when Collin was in the hospital because he had just had surgery himself he sent my sister out from Texas to check on us. My dad calls me daily to make sure that everything is going well out here. I can not tell you how much I love my dad. He is truly my BIG …my BAD…..MY BIG BAD DAD!!!! I love you!!!!!


Next, I would like to tell you about another wonderful father that I have in my life… my father-in-law. He is a very caring and loving man. He has been there for us through so much. I will never forget the day when I was pregnant with Collin and I got a call from the doctor saying that there was something wrong with my baby. Jason was at work and could not get off right away. My sweet father and mother -in -law cam over. I will never forget the love and support that I felt from him that night. He has also opened his home to us because of all of Collin’s medial bills we have moved in with them to try to pay them off. I love him so much and am so grateful to have him in my life!!!



Now, finally I will talk to you about Jason the father of my two sweet children. I could not have asked for a better man to be beside me in raising our children. He is so wonderful to them and they love him so much. When Collin was born we were both terrified of what the future held. I will never forget when he came back into my room after going to the nursery to be with him. I had not really had the opportunity to see Collin yet. Jason brought me a picture of this tiny little red baby. He told me that our little boy was going to be ok… he just knew it he said. Collin has loved his daddy from day one. They are so sweet together. Collin loves to cuddle his daddy and play with him when he gets home from work. When Regan was born Jason just started crying and saying she is perfect she is perfect!! There is something very special about the bond between a father and a daughter. Regan loves her daddy very much. When he gets home from work her face lights up and she just starts screaming daddy daddy. Then she tackles him with a BIG hug. It is very sweet. When he is at work she will pick up the phone and say “ Hi daddy, Hi!” I am so grateful to Jason for the love and time that he gives to our children. He is an amazing daddy!!!!! I love you so much!!!!!








Ok, as far as update for the weekend…… Yesterday was Ok, Collin had a hard time and we had to stay in all day. The sun was to strong to take him out. He did not like that. He did not sleep well. Today we had a wonderful Fathers Day. The kids woke daddy up with his gifts then we went to church. They were both very happy to be there. When we got home Regan crashed and Collin shortly after fell asleep. When everyone was awake we went out and got in the spa. We tried out Collin’s new UV suite in the spa. There was not any sun on that part of the house at that time. Collin was not able to stay in it long but Regan and daddy stayed in it for a while. At dinner time we ate outside. The sun was not around and it was PERFECT!!!! Regan ran around chasing the dog and Collin wanted to sit in his wheel chair and watch. They were both in such a good mood. Collin kept laughing at grandpa when they were playing. It was a wonderful day. If Collin was in pain he sure hid it well. When we were getting the kids ready for bed Collin started vomiting. I am not sure if he just did to much to day or if he got to much sun. He is sleeping now. I sure hope that he gets a good nights sleep.

BIG HUGS,
Julie
(mommy)

Friday, June 17, 2005 4:09 PM CDT

First off let me start by saying CONGRATULATIONS AUNT CRYSTAL!!!! Aunt Crystal graduated from High School yesterday. The kids and I stayed home since it was outside but we were there in spirit! Jason went and watched his little sister get her diploma! WAY TO GO!! Crystal will be leaving to go to BYU Idaho soon. We will miss you so much!!!



This will be a short one. I only have a little bit since Regan is napping. Collin has not been feeling well. The sun has been taking A LOT out of him!!!! The tops of his arms are covered in blisters/boils. It breaks my heart. Regan has been very cranky also. She is getting her I teeth as well as her one year molars. YIKES!!!!



This is a picture of the two of them outside early this morning before the sun came up. They are both still in their PJ’s.

In the afternoon we went with Great Grandma Jo to the mall. The kids needed to get out of the house but playing outside right now is not an option. Here are some pictures pleas enjoy…..







We hope that all of our friends are doing well. We will try to make the rounds soon! A BIG thank you to
Sammy-Joe and his family for the special package, Kathy for the wonderful goodies… the kids LOVED the stickers!, and Kim for Collin’s B-Day card! We are so grateful to all of you and your support!!
BIG HUGS,
Julie
(mommy)

Wednesday, June 15, 2005 11:36 AM CDT

Hi Everyone~
Yesterday was a pretty good day. Collin was not in to much pain. When he did start to hurt we were able to control it with meds. He is such a sweet heart! When he came home from school I kept working on his walking with him. He is doing so good!!! I can’t even tell you how proud of him I am.




Look at that HUGE smile on his face. I am so proud of him BUT more importantly he is proud of himself. He walked the entire length of the family room!!!! All he needs is a little more confidence and he will be off!

Regan got to have Watermelon the other day. She LOVES watermelon. I just had to share these pictures of her.





So, I have GREAT news. I wrote to several different companies that make UV protective clothing asking if they could donate any clothing to Collin. We heard back from NoZone right away. This is a wonderful company that was more than happy to make a difference in our little boy’s life. I can’t tell you how much it means to me to know that he has a little more protection from the sun. I have a feeling that this summer will be so much better!!!!!!!!!!! THANK YOU SO MUCH NoZone!!!!!!!


This is a picture of Collin is his NoZone jump suite! Isn’t he cute!


This is a picture of Collin with his NoZone hat on. Now Collin has a hat like his buddy Sammy-Joe!!!!

Collin had a hard night last night. This morning we woke up to a beautiful cloudy day! YEAH!!!!! Regan and I are going to work on Father’s Day candy lays for my Sunday school class. Please keep our friend Chris in your prayers. We love you all!
BIG HUGS,
Julie
(mommy)

Tuesday, June 14, 2005 12:31 AM CDT

Hi Everyone~
Thank you all for coming by to check in on Collin. Sunday was a good day. Sunday night was a different story. We went into the Spa for a bit Sunday evening and I am afraid that it got to his skin. Sunday night he was up itching and in pain most of the night.

Monday he woke up in a so/so mood. Regan and I took him to school and he was very happy to be there!! He LOVES school!!! When I went to pick him up they told me that he took 21 steps!!!!!! YEAH!!!!!! I am so proud of him!! I wish that the doctor that said he would never crawl or walk could see him now!!!

Regan was so sweet to Collin in the afternoon. Collin was itching and Regan knew that he was not supposed to be doing that. So, she came up behind him and rubbed him on the back and said “ no, no, bubba” She is so sweet and loving to him. He was in such a sweet and loving mood yesterday. When Regan was sleeping he just kept hugging and loving on me. I love it when he wraps his arms around me and say hug.. Well his word for hug.

Collin has yet another hard night last night. I don’t even remember falling asleep. Who knows how much sleep we got. He was banging his head against the head board pretty hard last night and he was itching a TON!!!

This morning he woke up at 6:30am and I woke up with him and we started our day. He just wanted to cuddle and play. Regan and daddy slept in. We took Collin to school and he was off and ready to go with in no time at all!

Here is an article that was printed about our family yesterday … enjoy….
BIG HUGS,
Julie
(mommy)

Sunday, June 12, 2005 5:20 PM CDT

Hi Everyone~
First off let me start by saying a HUGE THANK YOU to all of you that have been storming Heaven with prayers for my little boy! This weekend has been GREAT!!!! If you can not tell Collin has been feeling well. We stayed home all Friday and just let him rest. Friday night Collin slept until 5:00am with out waking up!!!!!!! When he woke up Jason cuddled him and went right back to sleep until about 7:30am.
YEAH!!!!!!!!!!!!!!!!!!!! Collin and Regan both got a good nights sleep which means that mommy and daddy both got a good nights sleep!! Collin and Regan woke up in a good mood and were ready for the day.

So, we decided to go ahead and go to the Special Olympics. We had LOTS of fun. It was a beautiful cloudy day. We went and walked around and saw all of the fun booths, played games, and got to do so much fun stuff. If you have not ever been to the Special Olympics be sure to find out where your local Special Olympics location is and go and support all of the wonderful athletes. We watched some of the people run. That is my favorite part. I can see Collin in so many of the children. I have a feeling that some day he will be running in the races. I could not help but cry as I watched these special people reach deep inside as they raced to the very end. I was most impressed by the ones that were far behind. They did not give up. You could tell that it meant so much to them to finish the race. It was very special to watch as parents cheered with pride. For once all of our “special” children were the “normal” ones and fit in perfectly. A day just for them, to celebrate them and all that they can do. So often the world focuses on what they can not do and do not see what we see in them. Yesterday thousands of people were able to see how wonderful our children are!!!!!

We were not able to stay to long. Since it was outside it took a lot out of Collin. After we were at the races for a bit it started to overwhelm him. Between the noise and the crowd it was just a little to much stimulation for him.


Collin and Regan with Stuart Little!


Collin and Regan in the airplane!!!


Collin and Mommy in the UPS truck. Collin is going to work at UPS so that he can deliver all of his own Happy Mail to all of his friends!!

We came home and put Regan down for a nap. Collin ended up falling asleep while he was looking at his photo album. Even though we were only there for just a little over an hour it took a lot out of him. After Regan woke up I took her to a birthday party at the park. Collin stayed home to rest. He had been outside for long enough already. Regan and her cousin Caleb did not want much to do with the party. They just wanted to run around the park. So, I spent most of the afternoon chasing her. It was fun!!!



When Regan and I got home we met up with the boys and went to dinner with Grandpa, Aunt Crystal, Uncle Jared, and Aunt Leslie. After dinner we went over to the store. We had fun playing in the toy section to try to figure out what to get Collin for his birthday. Regan just wanted to push Collin’s wheel chair around. Everyone thought that it was so sweet to see this tiny little girl pushing this big wheel chair around. She is so sweet to him! I think we got some good ideas about what we should get him.

Before I forget….. All of our CB friends that live or will be around here on the 4th of July and would like to com to Collin’s B-day party please do!!! Please e-mail me and I will get you the information. Thanks!!

Ok, so Collin had another wonderful night last night!!!! Double YEAH!!!!!!! He slept until 5:30 with out waking up. When he woke up all he needed was just a little cuddle and he was back to sleep! WOW two nights in a row!!!! I know that through the power of prayer anything is possible. I also know that God does not give us any challenge that we can not handle. I am so grateful for a loving Heavenly Father that understand our needs and is there to support us through our trails. We all needed a good nights sleep after such a hard week . (Especially Collin!)

This morning we went to church and Collin and Regan were in GREAT moods!!! Collin was so happy to be there. He just kept laughing and talking to everyone around us. Who knows what he was trying to say but it was sure nice to see such a HUGE smile on his face. Regan kept drawing pictures and giving them to everyone.

Thank you all for your love and support. Thank you for your prayers for Collin and our family. We are so grateful to each and everyone of you. Now I am going to ask that you do the same for a very sweet friend of ours. Chris has not been feeling well and she needs LOTS of prayers. Please help me storm Heaven with prayers for her. http://www3.caringbridge.org/wi/clownfish79/
THANK YOU SO MUCH!!!
BIG HUGS,
Julie
(mommy)

Friday, June 10, 2005 4:17 PM CDT

Hi Everyone~
It has been a VERY hard past couple of days. Collin has not been feeling well at all! Wednesday night Collin had a very rough night. Like I had said in my last entry it wasn’t even 9:30pm and Collin had already woken up once in pain. It continued through out the night. At around oh I think it was 1:00am we were giving him more meds. Then we put him in different PJ’s. We have to put him in PJ’s that are footed and have long sleeves. This way he can not itch himself at night. That tends to be when he inflicts the most pain to himself by scratching or banging his head against the head board. It is so hard because Jason and I are both so sleep deprived and we try to take turns and just comfort him. After a while it is hard though when he is hitting us or trying to itch himself on us while we are holding him. All I can do is pray to have the strength to get through yet another night. Often times I am in tears wishing that I could just take the pain on myself and take it away from him.

I ended up in Collin’s bed with him. Jason let Collin and I sleep in because he knew that we both needed it. Collin woke up at about 7:45am. So, he was late for school AGAIN. Luckily they are very understanding about it. Collin just needs as much sleep as he can get on the bad nights.

Regan and I walked over to the school at recess time to see how the umbrella was doing on Collin’s gate trainer. It worked GREAT!!! I was so happy to see him zipping around with it on with out any problems at all. There is a lot of open space so it did not really get caught on things. The Kindergartners loved it!! They kept getting underneath it with him. They all love him there and love to play with him. They call him baby Collin.

When I went to pick Collin up from school his teacher informed me that for the summer session the district intends to put 18 children in Collin’s class with only 1 teacher and 3 aids!!!!!! That is just CRAZY and very unsafe!!!!! So, I have been on the phone with the district people ever since trying to get an appointment to meet with someone about this. I am livid! It is so unsafe for these children to be piled into one classroom with out enough help. They are putting unrealistic expectations on the Teacher and aids.

Collin and Regan received a package in the mail from Lily and Natalie in Texas!!!! They loved their Shamu Dolls! Thank you so much!!!!!


Collin was not feeling wellL BUT he loves his Shamu!


Regan is giving her doll kisses! THANK YOU!!!


Latter in the afternoon we went to the Mall to walk around. I did not feel comfortable taking them for a walk outside. The UV just wasn’t how I like it. We walked around the ENTIRE mall, rode the quarter rides, and went up stares for some ice cream that the three of us shared.

I got both of the kids bathed and ready for bed. Then out of no where Collin just started projectile vomiting. He got it all over the floor, himself and me. I cleaned him up and he just was not feeling well. It is so hard when he does that because I don’t know how much medication stayed down. I never know if I should give him more or just leave it alone. Jason got home shortly after and helped me put the kids to sleep.

Collin had another hard night. (I feel like a broken record) I am sure it is because his meds did not stay down but it was a bad one. To be honest with you I don’t remember much about last night. All I know is that I came out to the living room with him and feel asleep with him on my chest on the sofa. We both ended up back in our own beds at what time I don’t know. Then at 6:30am my sweet little princess was up and ready for the day. So, my day began.

Regan through a fit when she thought that I was going to take Collin to school with out her. So, of course she had to come too. She LOVES to push bubba’s wheel chair from the car into his classroom. She smiles the entire time! She just hates the leaving part. Regan and I had a pretty mellow morning. We worked on some Project Princess stuff and went to see Great Grandma Jo but she was not home. When we went to pick up Collin from school they told me that he threw up his lunch today. So, no Disney Land for us. He is not feeling well and needs to rest. His body is telling me that he just needs some down time to recover.

I am hoping that Collin feels ok tomorrow. Tomorrow at Cal State Long Beach the Special Olympics will be going on. We love to go and watch and cheer for all of the people. Collin is not old enough to enter but one day he will and we will be cheering for him. Our family usually goes early Sunday morning and serves breakfast to all of the Olympians and their families. It is A LOT of fun!!!!

We REALLY need a good day!!! It is so hard on all of us when Collin does not feel well, especially Collin. Please keep our little man in your prayers. I am sorry that I have not been making the rounds these past couple of days but it has just been to hard. Thank you for your love and support!
BIG HUGS,
Julie
(mommy)

Wednesday, June 8, 2005 11:44 PM CDT

Hi~
Well, Monday night was yet another hard night. Collin was in a lot of pain and Jason and I took shifts. The night time is so much harder on him. He can not run from the pain. He can’t find something else to distract him. We have had almost five years of sleepless nights. Please don’t get me wrong I am not complaining for my sake but for Collins. My poor sweet little boy needs some good sleep. He needs sleep so that his body can heal and recover. He needs more than just one good night here and there.

Yesterday Collin woke up in a pretty good mood. Regan and I took him to school and he was happy to be there. When Collin was at school I had the wonderful opportunity to talk to Amy, Lily’s mom, on the phone. It was wonderful to be able to talk to Amy about Lily and Collin and every day stuff. It is so nice to know that there is someone out there that understands how you feel. Sweet little Lily has so many of the same characteristics that Collin has. She has not been DX with TTD yet but it looks like she has the non photosensitive type of TTD. Please go and stop by and say hi to Lily and her family http://www.caringbridge.org/tx/lily/ I feel very lucky to have such wonderful friends like Amy and Maria that understand how I feel and give so much love and support.

Ok, so back to Collin. When I picked him up from school they said that he had an ok day… not really good but not really bad. He did take 15 steps all by himself for them!!! When we got home he was itching and uncomfortable. He wanted everything his way because he was not feeling well.

Last night he had yes another HARD night. Boy I am tired! Collin woke up in a good mood and was ready for the day this morning!!! I took Collin to school and he was very happy. Regan was a big help to me today when we went shopping. She is so funny. She will point to everything that she sees and say “this” “that” It is so cute. She also waves to EVERYONE that she sees. We usually have to stop and talk to several people because they are so taken with how sweet she is. Regan and I picked Collin up from school and they said that he had a GREAT day!!!! YEAH!!!!!!! He was very good at table time and was patient and sweet. It was so good to hear that.

When we got home Collin was happy as can be!!!! Ok, so don’t laugh at me but I am always trying to find something to help Collin with the sun. When Regan and I were at the store we found umbrellas that were made to go on chairs. I saw them and thought how perfect they would be to put on Collin’s walker so that he can have more protection from the sun.


Collin with the umbrella.



Caught! Regan playing in the dog’s water!

It worked pretty good. The umbrella is a little big. It got caught on something a couple of times and got pulled down to the ground but for the most part it was ok. I think that as Collin gets used to it over time he will be able to move with it and hopefully we will be able to keep it on. I also got an umbrella for his gate trainer at school. Maybe this will work. Keep your fingers crossed. I just want Collin to have a good summer.

I am so glad that Collin had a good day today. He was just happy and playful all day. I am afraid that it is going to be another hard night though. It is only 9:30pm and Collin has already woken up once in pain. Please pray for him. Pray that he can get the sleep that he needs.

BIG HUGS,
Julie

Monday, June 6, 2005 4:23 PM CDT

Hi~
Well, I wish that I could write that Collin was feeling better but that is not the case. We have not seen the worst yet but I can truly tell that summer is here. We are going to be limited on everything that we can do now. Since Collin spends time outside in the morning at school that takes up a lot of “allotted summer time.” I am just going to have to get creative. In the beginning I didn’t realize that it was the sun that was doing the damage to Collin. I just thought that it was part of his skin problems. Now, the more that I talk to Maria and the doctors the more I realize that he is in deed allergic to the sun. Why couldn’t it have been cats or some kind of food. Why did it have to be the sun? Oh well, I am sure that we will have fun making up things to do in the house. My in-laws are getting a spa that does not use chemicals so Collin will be able to go in it. They are putting it in a shaded area so that Collin can spend time in it. Collin can not go in pools because the chemicals hurt his skin to much. So, this will be one thing that we can do this summer.


Oh! I forgot to thank Alisa, Devin, and Kara for the package that Collin and Regan got on Saturday. THANK YOU SO MUCH GUYS! I could not have come at a better time. Devin’s page

Ok, so as far as our weekend. Yesterday we went to Apple Valley. That is were my mother lives. My little sister and her boyfriend came in from Texas. So, we of course wanted to see all of them. It is about a two hour drive. Regan slept the whole way there. Collin did good. He just watched his baby Einstein movies the entire time. After we got up there Collin started to show signs of not feeling well. Before long he was itching and fussing. Of course being in the desert does not help one bit but he did pretty good for the most part. He was just VERY clingy. He loved it that Poppie and Aunt Karen would hold him when he went up to them. Regan just loved making a mess and chasing the dog around. By about 3:00 Collin was feeling awful!! He was crying and I just could not comfort him. We ended up having to leave. On the way home he just itched and felt bad. Jason stopped half way home to run in the store and get some motrin to give him in hopes that it would take away some of the pain. This should tell you how bad he felt. He fell asleep in the car. He never takes naps anymore BUT lately he has taken several. When we got home he was just happy to be home and with his toys.

Last night we shaved Collin’s hair off because it was starting to fall out. So, instead of having patches we just buzzed it! WOW what a good looking boy!!!


(C-Woman~ BALD IS BEAUTIFUL!!!) Chris’s page

He had a BAD night. Jason and I took turns with him. It was just to much for either of us to handle. He woke up in a rotten mood. I could not decide if I should take him to school. Well, he decided for me. He grabbed his book bag and kept saying “out, out” I went ahead and took him to school. I asked them to call me if he showed signs of feeling bad. School is good because it gets his mind off of not feeling well.

When Collin was at school Regan and I ran around and tried to get some things done. We went and got a father’s day gift and we went to get put a deposit down for Collin’s B-day party. I can’t believe that Collin is going to be five in less than a month!! Since his birthday is on the 4th of July it limits us as to what we can do. I always said that I would not have a party for everyone else’s kids. I want to have a party for Collin. Well, this is the first year that I know that Collin will enjoy his party. We are going to have it at Chuck E Cheese. It is the next best thing to Disney Land and it is inside. Collin LOVES the quarter machines. I am so excited. Every other year we have done BBQ because it is the 4th and that it just what you do. Well, Collin does not have fun. So this year I said forget tradition we are going to do something just for Collin.

I hope that everyone is doing well.
BIG HUGS,
(mommy)

Saturday, June 4, 2005 10:29 PM CDT

Hi Everyone~
Sorry that I have not written in a bit but things have been very hard. I can tell that summer is coming. Summer is the hardest time for Collin. I don’t know how to explain it in words but when summer comes he is a different boy. Hi is in so much pain all of the time. He tends to get more clingy and wants to be held more. He gets more frustrated when he does not get his way. He is still a very sweet and loving little boy don’t get me wrong but the sun and all of the other elements start to take a toll on him.

Thursday we found a sore on Collin’s arm that had become infected. It was basically like a boil. We had to pop it and get the core out. Then put antibiotics on it and give him steroids to prevent the infection from spreading. I HATE having to do that!!!!!!!!!!!!

Friday I picked Collin up from school and they told me that he had a hard day. It was very much a “me” day. Everything had to go his way or he was mad. He was itching and feeling awful. They informed me that his white jacket was in his back pack covered in blood. He was itching so much that he gave himself a nose bleed. When we got home I gave him all of his meds in hopes that he would feel better. He started to act a little better but still was not 100%. We went ahead and went to Disney Land. We figured if anything would cheer him up it would be Disney Land. Well, he did ok. On the ponies he didn’t even want to ride he just wanted daddy to hold him. We didn’t stay long. He was such a trooper. I know that he felt so bad but he did not complain once. He just didn’t smile as much or get excited about things like he usually does. That will most like be our last trip to Disney Land for a while. L It just gets to hot in the summer to have him out for to long.

Saturday we woke up to a beautiful cloudy day. Collin and Regan were both up nice and early. Jason had to work so Collin, Regan and I took a nice long walk to the park at 8:00 am. It was perfect! It was still pretty dark out. We played for a while and then came home. As soon as we got home I could tell that Collin was still not feeling well. Regan got a VERY bad diaper rash and wanted to be cuddled and had a hard time. Collin got a little jealous which seldom happens. When I got her to fall asleep for her nap. He just complained. So, when Regan woke up Aunt Crystal and I took the kids to the Mall. I hoped that the ponies would make them both feel better. Collin just loved being “out”. He would be happy if we walked around the mall all day. When we went on the ponies Regan just wanted me to hold her. It is so hard when they are both not feeling well at the same time.

Jason and I were able to go out for a date tonight. Boy, did I need it!! It is always nice to get away for a bit. Just to recoup and get ready for the next day.

I am posting some pictures of Collin.These pictures have been taken at different times. I want people to know how serious and painful this illness is. I know that not many people know what Trichothiodystrophy is but I am hoping that as more people find out and show interest in Collin and all of his friends with TTD than maybe someone will do something to help them.

BIG HUGS,
(mommy)




This is Collin’s face.



This is Collin’s arm.



This is the back of Collin’s head. His hair falls out and he gets sores on it.

Thursday, June 2, 2005 11:20 PM CDT

I often sit and wonder


I often sit and wonder what you would say.
I have a feeling that you would talk for days.
Would you tell me that it hurts so bad,
Or would you say I love you mom and dad?

Don’t worry my son I know what you want to say
You tell me in your own special way.
The way you wrap your arms around me tight.
The way you smile as we cuddle every night.

I often sit and wonder what you would want to be.
I have a feeling you would say I just want you to be proud of me.
A teacher, a great leader, a sales man or a fireman?
But there was someone who had a much bigger plan.

Don’t worry my son I know what you were sent here to be.
A special gift to love and cherish just for me….
No, you had a special mission from the day of your birth.
A special angel sent to teach of peace and love to all of us on earth.

I often sit and wonder how I can be so blessed
And If I am passing this very important test.
To love and protect someone so special and dear
To trust in God’s will and trust that he is near.

Don’t worry my son I will walk beside you every step
And when you are weak in my arms you will be kept.
You are my special angel and were sent to me on loan
But for all eternity a family we will be known.

To: Collin
From: Mommy


Collin I love you so much!!!!!
You are my Hero!!!

Tuesday, May 31, 2005 3:03 PM CDT

Hi Everyone~
This weekend was a pretty good one. You obliviously know how Friday went by the pictures. Saturday was a pretty good day. We stayed in with the kids for the most part. Jason and I went and played Softball with people from church and then latter went to see star wars. Collin was feeling pretty good.

Sunday on the other hand was not near as good. We woke up and went to church then when we came home Collin was all out of sorts. He did not feel good at all. He was in A LOT of pain. Jason sat with him in his lap and watched a movie with Collin. Collin felt so bad that he fell asleep… no bottle.. No cuddles… nothing… he just fell asleep. That does not happen often. So, when it does we know that he is not feeling well. When he woke up he was very angry and hurting. He itched so bad that he caused his lips to split open and bleed. I hate it when he is in so much pain that he would hurt himself to relive some of the other pain. His poor little face looks bad :*(

Yesterday was MUCH better. Collin and Regan both woke up in good moods. We had a wonderful Memorial Day together. It was a Fun Family Day. We went to the Mall and road the ponies and walked around. Then latter in the day after the sun went down a bit we went for a walk and went to the park. Both of the kids had LOTS of fun on the swings. It was nice to have Jason home with us and spend time together as a family!!!!!

Collin had a pretty good day today at school. When I went to pick him up from school his teacher said that he was a good boy and that he kept his hearing aids in most of the day! YEAH!!!!! Now, Collin and Regan are playing together. Regan misses Collin so much when he is at school. She was kissing him when we went to pick him up. They are so sweet to each other! Boy I am lucky!!!!

BIG HUGS,
Julie
(mommy)

Saturday, May 28, 2005 0:32 AM CDT

We just want to wish everyone a Happy Memorial Day! THANK YOU to all of you that have served or are serving to protect my freedom! Thank you to all of the mothers that watch their children leave to protect my freedom.
THANK YOU!!!!!!!!!! YOU WILL NEVER BE FORGOTEN!




HAPPY FRIDAY EVERYONE!!!!!!!!!!!!!!!!!

Today was a WONDERFUL day!!!! I am so happy to say that today was a very good day. Collin slept the whole night through last night. He did not wake up once in pain!!! YEAHHH!!!!!!!!!!!!! Both of the kids slept in. Collin was late for school ….woops. It was a beautiful cloudy day. Collin was very good at school again today. So, we were able to go to Disney Land! Double YEAHHHHH!!!! We had lots and lots of fun! We had a very hard week and we all needed to have some fun. It has been a couple weeks since we have been to Disney Land. Both of the kids were very happy to be there. We all had fun spending time together as a family. I just hope that this weekend goes just as well. It has been such a good day and it has been a while since we have had such a positive day. Ever once and while I could tell that Collin was not feeling well BUT he did not let that get him down. He kept a smile on his face and was very excited to be “out” at Disney Land.

Here are some pictures of our afternoon at Disney Land………..



Collin and Daddy on the ponies.


Mommy and Regan on the ponies.



Collin dancing on Small world!



Collin with his feather to go on Dumbo.




Thanks for stopping by to check in on Collin. Please sign his guest book.
Happy Memorial day weekend!!!!
BIG HUGS,
Julie
(mommy)

Thursday, May 26, 2005 10:41 PM CDT

Tuesday night was VERY hard. Regan woke up at 3:30am with her teeth hurting her. Finally at 5:00am I asked Jason to take her and give me a break. So, just as I laid my head on my pillow Collin woke up. Then I had to crawl in bed with him and comfort him since he was hurting and about that time all of his meds are wearing off. Collin woke up at 6:30 for the day. Boy was I tired Wednesday. I felt like I was just walking around in a haze all day. You would think that I would be used to it by now but I am not. I know I will get sleep some day but it is just hard to imagine since I have not had a good nights sleep in I don’t know how long.

Wednesday morning I took Collin to school and we went to an assembly right off the bat. Collin received a Hall of Scholars award for Taking Independent steps. I am so proud of him. If you would have told me last year that he would be taking on average 6 independent steps I would not have believed you. He is an amazing little boy. When I think that there isn’t anything else that could do to amaze me more he goes off and works hard and makes me proud yet again. Since, I was half asleep I forgot my camera. Luckily one of my friends had her camera and took some pictures of Collin for me. When she e-mails them to me I will post them.

This is a picture of Collin at home with his award!!! YEAH Collin!!



Ok, so that is the happy news. Here comes to frustrating news. I dropped Collin off in his class room and another little boy was playing with one of “his” toys. Collin got mad at him and bit him!!! I could not believe my eyes. I hadn’t ever seen him like this with another child before. I know that he was in pain and not feeling well but I have not ever seen him that aggressive and upset. I was so upset. I just started to cry. It is so hard because I don’t know how to make him understand certain things. When it comes down to it to be honest there are things that he probably wont ever understand. The nurse saw me upset and talked to me for a bit. She explained that these children are very self centered because that is the only way they know how to survive. They are always in self preservation mood and often don’t even take others into consideration. After talking with her I felt much better. She reassured me that it was most likely his phase of the terrible twos. We will just have to be patient with him and be sure to let him know that biting is not acceptable.

I picked Collin up from school latter in the day. He was still not feeling well. He got mad at me because I would not take him “out”. So, he tried to bite me. I put him in time out and got on to him. Then latter in the evening Regan had a book of Collin’s and he got mad and tried to bite Regan. I put him in time out and got onto him again. I can’t even imagine how frustrating it is for him not being able to communicate what he wants or how he feels. So, he tries to convay his frustrations in one of the only ways he knows how. I hope that this was just a bad day.

Today was MUCH better. Collin did not bite anyone at school or at home. He seemed to be feeling better today and maybe that had something to do with it as well. I am going to start working with him at home with the PEKS system. We are going to start very simple. I am hoping that if he can give me the card to let me know what he wants and develop a form of communication it will make him feel more comfortable displaying his frustrations in a different way.

Collin is a very loving and happy little boy. I know that it must be hard for him to be “trapped” in his little body. I am sure that some times it gets a little overwhelming. All I can do is pray for the strength and knowledge to get through this phase in his life. I know that God does not give us anything that we can not handle. I put my faith and trust in his hands that all will be fine.

Jason told Collin this morning that if he got through today and tomorrow with out biting than we would go to Disney Land tomorrow. I am not sure if he understood or not but what ever it takes. He is half way there. We all need a fun day tomorrow. It has been a hard week.

Thank you all for stopping by to check on my little man. Be sure to sign the guest book.
BIG HUGS,
Julie
(mommy)

Tuesday, May 24, 2005 11:00 PM CDT

Hi everyone~
Today has been a VERY hard day. I don't like days like this!!!!!!!! Collin slept ok.. he only woke up 2 times last night. He woke up in a pretty good mode and then it went down hill from there.

We went outside to get the double stroller to take Collin to school. Well, Collin wanted to go in his wheel chair and got very mad when I did not put him in it. I could not take him in his wheel chair becuase I had Regan as well. They do not need his wheel chair every day at school. For the most part they have him walk with his walker. The only time they use his walker is when he goes to P.E.

When I went to pick Collin up from school his teacher informed me that he had an "all about me day" That is what his teacher and I call it when he gets very angry when he does not get his way. This is so unlike him but so frustrating when he acts like this.

We got home and he was just mad! Nothing that I did would make him happy. He wanted to go oustide so badly and I would not take him out becuase the sun was to harsh at the time. I knew that something was just not right with him.

Then at 2:00pm I had to leave to go to Collin's IEP for the next school year. It went pretty well. They are going to start trying to use PEKS cards with him because his speech is not improving. His speech therapist has been working with him for two years and has not seen any improvment. Also, his vision specialist is not going to work with him any longer becuase he is doing so well with his glasses and limited vision.

When I got home Collin was still having a hard time. It was after 4:00pm by the time I got home. So, I took Collin and Regan outside to play for a bit. Collin did not even want to walk with his walker or go on his little bike. All he wanted to do was sit in his wheel chair outside. He is so funny. Regan would come behind him and push him all around until they ran into a wall. They both thought that it was funny.

Latter when we came in I noticed that he was getting blisters on his eye. I had to start giving him meds to keep it under control. He was miserable. He did not want to eat dinner, play, or do much of anything but itch and complain.

I feel so bad for him when it gets like this. I just want to make it all go away. We give him TONS of meds and he is still so miserable! All I can do is love on him and cuddle him. Some times that is so hard to do because he is fighting it so much.

I love him so much and am so grateful that my Heavenly Father trusted me enough to take care of him. He is a very specail little boy that has been through so much! Regan is a special little angel as well. It takes a special person to be a brother or sister of someone like Collin.

Thank you all for checking in on my little man. Please pray for him.
BIG HUGS,
Julie
(mommy)

Monday, May 23, 2005 5:59 PM CDT

Hi Everyone~
Well, things went well this morning. It went as good as I could have hoped for it to go. We went in at 6:45 am and filled out the paper work and went right back. Collin had a WONDERFUL nurse that took her time and was very sweet with him. I gave Collin his sleepy medicane and he was out with in thirty minutes. The nurse waited for him to get sleepy before she put his line in. She was GREAT! Collin didn't even realy fight it. At first he was fighting going to sleep so I layed down and had Jason give him to me and we just cuddled on the bed. Shortly after he was OUT. It took about an hour to do all of the testing and Collin slept through all of it. YEAHHHHH!!!! When it was time to wake up he did not want to. Every time Jason or I would mess with him he would just hit at us like he was saying five more minutes just give me five more minutes. After Collin was good and up and had eaten some food we were able to go home.

This is always to funny/hard part. You see Collin is still so out of it from the medicane that he does not realize that he can not stand or crawl with out falling over. After falling several times I made him just sit in my lap. He has been VERY clingy. I am not sure if it is because of the medicane or if it is because he still is hurting so much. He is such a trooper though. I am so grateful to have him in my life.

I have to tell you a sweet story. When we were home this morning collin was having a very hard time. So, I layed with him on my chest to try to get him to fall asleep. Regan came over and took my hand off of Collin's back and started to pat him herself. It was so sweet. Then she kept giving him kisses on the head! I don't know how she knows it but she always seems to be there for her bubba when he is not feeling well.

We will not get the results for several days. I am just praying that all comes out well.

Thank you all so much for you support and kind words. It means so much to all of us.
BIG HUGS,
Julie
(one proud mommy!)

Sunday, May 22, 2005 3:53 PM CDT

Hi Everyone~
This will be a short one. Collin is having a very hard time. Yesterday we went to a little friends birthday party. It was at the park @ 1:00 YIKES. We kept Collin covered and under the shade but we were only able to stay for about 30 mins. It was just to much for him. I feel so bad for him and I also feel bad for Regan becuase she did not want to leave yet. She was having fun with her little friends. This is going to take some time to get used to. I think that we might have to start taking two cars and one of us wil leave early with Collin and the other stay with Regan. We came home and Collin was a bit clingy and out of sorts.

He slept ok last night. Jason and I went out on a date last night so we didn't even have to put them to bed. THANK YOU Nana!

This morning Collin woke up in a good mood. So, we all went to church. Collin loves to Church! He loves going in the gym with his walker. It is such a big space for him to just run like crazy. He was RUNNING all over the place!!! Regan was just running behind him laughing and saying bubba! She loves to see him walking.

We got home from church and latter in the day Collin just started crying from pain. I have a feeling that he got to much sun yesterday. (Even though it was just a matter of minutes I think it was to much) Collin also had VERY runny BMs today. He even got his BM all over his clothes. It has been along time since he has done that.

Right now he is asleep. He NEVER takes naps. So, that should tell you how bad he feels. I worry so much about him all of the time. We will go in for his MRI in the morning. Please pray that all goes well and that it will go much better this time.

Thank you for stopping by to check on my little man! Be sure to sign his guestbook.
BIG HUGS,
Julie
(mommy)

Friday, May 20, 2005 11:03 PM CDT

Hi Everyone~
FIRT OFF A HUGE THANK YOU TO TUESDAYS CHILD THAT MADE THIS BEAUTIFUL PAGE JUST FOR COLLIN!!! THANK YOU CHRIS!!!!!

I am sorry that I have not written in a while. I know I say it all of the time but life has been CRAZY. I had to take Collin into the doctor on Monday and on Wednesday. Collin is doing pretty well. He has actually been getting some sleep. Daddy has been VERY happy about that! Mommy on the other hand has been up with a little girl that is teething and not feeling wellL. I hope that those teeth come through soon. I am trying to find out if the blister that Collin has been getting on his eye balls are from the sun. Our friend Maria told us that our friend Sammy-Joe gets blisters on his eyes when he has had to much sun. If this is the case and it is not due to an allergy but due to the sun than we will have to look into getting him prescription sun glasses. I HATE that the sun is so mean to my little boy!!! GRRRRRR

I have been at Collin’s school all week long getting ready for Collin’s schools carnival. It was a big success. We had our special Ed. Booth where we did face painting. All the money that we raised is going right back to the special Ed. Classes. YEAH!!! Thank you al l for your help. A HUGE Thank you to Auntie Jen! She watched Regan all morning for me so that I could get things ready. I was at the school from
8:00-8:00. I was able to come home and get an hour break here and there for a bit but for the most part I was at the school either setting up or helping at the booths. We did have a chance to take the kids over. Collin LOVED being out and going over to his school. He liked the DJ and the music. Regan like all of the animals in the petting zoo.

So, I just wanted to tell you about a special friend that we met today. A little bald headed girl came in with a cap on and wanted to have her face painted. When she took off her cap I saw that beautiful peach fuss that we have all grown to love. She looked so familiar. I asked her if she went to Millers Children’s. She said yes and we started to talk. She knew who Collin was and I was surprised that I did not know that she was in our school. She had the most beautiful little face. When she spoke she sounded so grown up. It just reminded me of how fast these sweet little children have to grow up. Kara has cancer and has been fighting an amazing fight. She was even on the Oprah show. Anyways, her blood counts are high and they are unable to give her any treatment right now. So, please keep our new special friend in your prayers. I feel so lucky to have had her sit in my chair to paint her face. I know that God has brought us together for a reason. I am already trying to think of something fun to do for her!!!!!

Thank you all for your entries in the guest book. We are so grateful for all of the support that we get from each on of you. We are truly lucky to have so many wonderful friends!
Big HUGS,
Julie
(mommy)

Here is a picture of Collin in the shade enjoying the music!


Here is a picture of Regan and mommy with the animals!

Tuesday, May 17, 2005 4:11 PM CDT

Hi~
I am sorry that I have not been able to update in a while. Things have been CRAZY as usual. I am warning you now this will probably be a long entry. Ok, here it goes…..

Saturday was a VERY hard day for Collin. In the morning he had an allergic reaction to something. (He must have rubbed food in his eyes when I was not looking.) So, he got blisters on his eye balls and his eyes started to swell shut. He was so miserable. I had to load him up with lots of meds. Nothing that Jason or I could do would comfort him. In the afternoon we went to the mall with grandpa, nana, aunt Dawn Marie, and baby Shane. Jason and Regan stayed home because Regan was sleeping. I was hoping that the Mall would cheer him up. It did a little bit but he was still pretty out of it. At least he was not crying .Collin and Shane road on the ponies and had fun doing that. Then it was time to leave and Collin was not happy about that one bit! When we got home he was back to complaining and having a hard time.


This is a picture of Collin and Nana on the pony.


This is a picture of baby Shane on the pony.

We had to watch baby Shane Saturday night. Dawn Marie and Shane came all the way from Reno to see Bryan in his musical. So, we got to play with Shane and watch him. I am so glad that we had the chance to spend time with him and give him LOTS of loves. I hate that they live so far away!!!!!!

Back to Collin….. Saturday night was AWFUL!!!! He was up all night in pain. Jason and I took turns all night trying to relieve each other. I think we got about three or four hours of sleep max. It was so hard to watch him in so much pain. I wish that I could just make it go away!

Sunday Jason stayed home with Collin in hopes that Collin would recover from the night before. Regan and I went to church. I teach Sunday school and needed to be there. My mother-in -law watched Regan for me. THANK YOU!!! After church we had a BBQ before Dawn Marie and Shane had to go home. It was a beautiful day. We lathered the kids up with LOTS of sunscreen and covered Collin from head to toe. They went out back and played for a little bit. After a while I had to bring Collin in since there really isn’t much shade back there. He was so sad. When we were in the Kitchen he just sat at the back door looking outside and just kept saying “out” “out”. I know that it hurts to watch everyone else outside and he was stuck inside. He LOVES to be outside and it breaks my heart to see him sad.

Sunday night he slept pretty well. Ok, so here comes every mothers worst night mare. I was working at Collin’s school on Monday with Regan. (getting stuff ready for the carnival on Friday.) I saw Collin’s teacher and my Aunt go by the room. I popped my head out and I heard “no I don’t know but there is his mother” . I went out there and asked what was going on. His teach replied “We lost Collin.” I quickly asked “what do you mean you lost Collin” They were not watching him and he went out of the classroom and they were running around looking for him. I grabbed Regan and started running around like crazy. My heart just sunk. We found him shortly after outside and luckily the nurse saw him out her window and went outside with him. She stayed with him out there to see how long it would take for them to find him. I was so livid!!!!!!! Collin made it all the way down the hall , through the nurses office, and outside!!!!!!! If he had made a right turn instead of a left he would have been in the street!!!!!! Collin does not walk with out a walker. So, he was out side crawling (bunny hopping) on the cement. If he would have lost his balance and fell he could have busted his head open. I can’t even explain how mad and scared I was. I guess the OT was supposed to have been working with him. Well, she finished and just put him on the ground with out putting the gate up or telling the teacher. When I told Jason what happened he was so pissed!!!! He wants a meeting with the principal.

This morning I went in and met with the teacher and told her that this better not EVER happen again. We talked about what happened and what could have been done differently . We also talked about what needs to be done to make sure that the gate stays up all of the time in the door way. Collin is not the only mobile child in his class and I would hate to see happen again to any of the children.

Today is going much better. Collin and Regan like always have me on my toes. It was so cute. This afternoon I put Regan in her crib for her nap and she did not want to go to sleep. She was crying and mad. Collin went to the outside of the door and was trying to push one of his books under the door. She heard him our there and just started crying bubba, bubba, bubba. It was so sweet. It was like she was saying bubba come and rescue me! Oh, I love them so much! Well, I am sorry that this has been so long but a lot has been going on. I hope all is well with all of our friends. I am going to try to make the rounds this evening!
BIG HUGS,
Julie
(mommy)

Friday, May 13, 2005 10:27 PM CDT

Things are going good right now. Collin is feeling better and is doing great! He is such a little champ! We were unable to go to Disney Land this week (it was to bright!) We did get to go for a walk today and play at the park for a bit. Collin is so happy when we are able to go outside. He LOVES to be “out”.

Last night I got a night out by myself. No kids can you believe it….. I know me either. I first went to a PTA Board meeting then I went to my little brother-in-laws high school musical. They are doing Guys and Dolls and he has one of the leads. He is Sky. He did a great job. I am VERY proud of you Bryan!!!!! My mother-in-law did all of the costumes and she did an amazing job as well!

Collin has hit a new milestone. He has learned to climb!!! Oh No we are in trouble!!!!! He is so proud of himself. Anything that he can climb up he will. I am going to attach some pictures of him doing this.

I hope that everyone has a wonderful weekend. My sister-in-law is coming into town tomorrow with her baby. I look forward to spending time with them. I get to baby sit Shane tomorrow night! Yeah!

Be sure to sign the guest book.

BIG HUGS,
Julie
(Collin’s mommy)


Collin climbed up the chair and was kissing his pictures on the computer slideshow.


This is a picture of Collin climbing out of the ball pit and onto the back of the couch.


He made it over! He was so proud of himself!

Wednesday, May 11, 2005 9:30 PM CDT

Thank you all for your prayers. My little man is doing good. Tuesday was a long and hard day. Collin was up at 5:00am in pain. (Of course he had woke up several times through out the night as well ) It was very hard to comfort him and get him happy. Luckily it was still very dark outside. So, I was able to go out back with him and just swing with him and cuddle. We had to be at the hospital by 6:30am.

We got there and did all of the “getting ready” stuff. Weighing in , blood pressure, changing him into the cute little gown, and all of that fun stuff. It was so sweet. Collin saw some of “his” nurses and was blowing them kisses. He is so sweet. Even with all of that was going on and being in pain he was still giving kisses.

Then I had to taken Collin into the operation room. That part is always so hard. I have to sit there and hold him while they try to put the mask on him. Of course he fights it and gets very mad. When the mask kicks in and his eyes roll in the back of his head and he goes limp and they hurry and take him from me it breaks my heart. I had to give him a kiss and tell them all to take care of my baby.

The surgery went well. It took longer than I thought it would. It should have been a real quick one and after an hour I started to get worried. When he went into Collin’s ears he removed the old tubes that were coming out and found fluid and some damage. He took care of all of that and then put new tubes in Collin’s ears.

That was the easy part. When they brought Collin to me in recovery he was so out of it. This is his eighth surgery and he hasn’t ever been this way before. He was so sick from the anesthesia. He was vomiting so much and was very angry. He hated the way that he felt and nothing that Jason or I did made him comfortable. All he would do was just cry. It is always so hard to watch your little boy go through so much.

They finally let us go home and he cried the whole way home. When we got home he was still not feeling well. So, mommy had to give him LOTS of mommy cuddles. Regan was a sweet heart. I don’t know how she understood us but we told her to be nice to bubba today and she was. When he was crying she would bring him his favorite toy. I have two amazing children!

Today Collin woke up feeling great!!! He is such a trooper! When I took him to school today he was so excited. When we walked through the doors he just started clapping. His teacher said that he had a GREAT day at school!!!! YEAH!!!!!!!!!

Thank you all again for checking in on my little man. We appreciate your prayers, love and concern.
BIG HUGS,
Julie
(Collin’s mommy)

Monday, May 9, 2005 12:14 AM CDT

Hi Everyone!
I hope that you all had a wonderful Mothers day. I had a great one. We went to church in the morning. Jason helped me out all day and was just a sweet heart. The kids made little things for me and Jason got me a great gift! We had dinner with the whole family and played games after. It was just a wonderful day all around! YEAH!!!!!

This morning has not gone quit as well. I just have to laugh becuase it seems like things like this always happen to us.

Friday I got a message left about Collin's MRI. I tried calling them back but of course they had already left for the day. So, I called this morning and there were problems. They had Collins shceduled for deep sedation rather than oral sedation. I told them that he did not need deep sedation for just a MRI. I refused to have Collin come in and be deep sedated. Especialy since he has to be deep sedated tommorrow for his surgery. They called the doctors office and well, what do you know I was right. GRRRRRR so we had to reschedule becuase of all of the confusion.

So, now Collin's MRI is scheduled for May 23rd. Hopefuly things will go beter next time.

Grandmothers service was on Saturday. I was unable to go since it was in Texas and with all Collin had going on this week I could not leave him. My step mom and dad told me that it was beatiful and that lots of people came to celebrate her life. She left an amazing 85 years worth of memories for people to remember her by. You will always be in our hearts and never forgotten.

Thank you all for stopping in to check on Collin. Please be sure to sign the guestbook.
BIG HUGS,
Julie
(Collin's mommy)

Sunday May 8th

HAPPY MOTHERS DAY!!!! To all of our friends that are mothers, to all of our friends that have mothers, to all of our friends that some day will be mothers we wish you a VERY happy mothers day!
BIG HUGS,
Julie, Jason, Collin, and Regan


Friday May 6th
Oh boy what a morning!! This was that kind of morning that I just wanted to pull my hair out! Ok, I had to take Collin to the doctor for his pre-op appointment and then to the hospital to pre-register him. I did not have anyone to watch Regan so I had both of them with me. We were at the doctors office at 8:30am. We were in and out with in 30 minutes. Wonderful! So, then I had to take them over the hospital to pre-register. Luckily it is right across the street. We were there nice and early so of course I thought that we would be in and out. Boy was I wrong. We did not get out of the hospital until after 11:00! All we had to do was fill out paper work, answer some question, and see a nurse. They had us wait and wait. I finally asked what was taking so long. She said that they were taking people in by priority. Ok, so you are telling me that a four year old handicap little boy is not a priority! It's not like we were passing someone up who needed surgery all we were doing was filling out paper work! I had two small children in a stroller and they saw me fighting with them and yet Collin was still not a priority! I was ticked! We were finally called back and boy this nurse took forever! It must have been her first day or something. I know that I was short with her but I was at the end of my rope! I just kept saying yes I know what I am supposed to do this is his eighth surgery.

Collin and Regan both did well considering the fact that they were stuck at the hospital all morning. By the time that we left they were both melting down. Regan had not had a nap yet and was hungry and Collin was hungry as well.

Collin was unable to go to school today because of it all and that has had him all upset. It is so hard when you change his routine. He HATES change. He is a little boy with a strict schedule. We are hoping to go to Disney Land latter this afternoon when Jason gets home. Hopefully that will cheer him up. He needs something to make him happy right now. He is in so much pain and is so frustrated.

Please keep my step-mom and the rest of the family in your prayers. Grandmother lost her battle with cancer on Tuesday night. She was a very kind, loving, and beautiful woman. She loved her family VERY much.

Thank you all so much for your prayers, love, and support!

BIG HUGS,
Julie
(Collin's mommy)

Update*****
We were able to go to Disney Land tongight. Here are some pictures.
Regan Goofy and Collin




Mommy and Collin on Small world. Collin LOVES small world!

Wednesday, May 4, 2005 11:57 AM CDT

Update***** I took Collin to the doctor and it looks like he is going to have to have surgery on his ears next week. Of course this was not what I was wanting to hear. So, he will have to be put to sleep for his MRI on Monday and then again on Tuesday for his surgery. NO FUN! Please keep him in your prayers.

I wish that I could say that yesterday ended as well as it started BUT that is not the case. Collin was in SOOO much pain yesterday. It was a hard one. He was angry, crying, and so frustrated. He wanted to go "out" but mean ol' mommy would not let him becuase he was still recovering from going "out" the day before. I got to take him out for a bit when the sun went down but he was in so much pain.

Last night he was up all night. He could not get comfortable and just hurt. I HATE it when he is in so much pain and I can not do anything for him. All I can do is give him pain meds and hold him and pray that it works.

It is a beatiful cloudy day her in California today. Collin needed a cloudy day. Hopefully he will feel like going outside latter today.I let him sleep in late this mornging. I was not going to wake him up after the night that he had. He woke up in a pretty good mood so I went ahead and took him to school. (late of course)

Collin has a doctors appointment today at 1:45. I hope that after we get his tubes out it will help him feel a little better.

Thank you for stopping in to check on my little man. Please be sure to sign the guestbook.
BIG HUGS,
Julie
(Collin's mommy)
P.S. Thank you Alisa and Devin for sending all of these clouds and rain down from Utah we needed it!!!!!!

This is a picture of Collin and Regan from this morning. They have lots of fun together!


This is a picture of Regan with her head scarf on that our friends from down under sent to her!

Tuesday, May 3, 2005 3:08 PM CDT

Yesterday we had a good day. We were able to even go to the park and play for a while!!! It was so nice we have not been in so long. Collin and Regan were both so happy to be there.

Collin slept the whole night through with out waking up once in pain!!! YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I can't even begin to explain how wonderful it is when he gets a good nights sleep and a pain free night. We started him on some new meds last week and I think they are working!!!! I hope sure hope so!!!!

Collin and Regan both woke up in a good mood today. I love mornings like that! They were both happy and ready to go. Regan and I took Collin to school and came back home and cleaned and did that fun stuff. A porta-medic was scheduled to be here at 10:00 and they called me at 10:30 saying that they would be another 45 minutes. I told them not to bother. I had to be back at Collin's school at 10:45 to help out with our PTA's "thank you teachers" lunch. Regan helped me set up and put all of the wonderful food out. Well, ok she ran around and tried to eat as much as I would let her. All in all it turned out great!

Regan and I went and picked Collin up latter from his classroom. He had a rough day. I could tell just by looking at him. He was drained. I am not sure if we did to much yesterday or what but he is wipped out! We will have to take is easy for the rest of the day and just let him get his strength back up.

Thank you all for checking on Collin! We are so grateful for all of our friends that come by to say hi! Please be sure to sign Collin's guestbook. Thank you so much!
BIG HUGS,
Julie
Collin's mommy

Sunday, May 1, 2005 3:17 PM CDT

It has been a pretty good weekend. We have stayed in for the most part. Collin has not been feeling well. So, we were unable to go to Disney Land on Friday. :(

On Saturday Great Grandma Jo, Collin, Regan and I went to the Mall to get Collin some new special shoe. Hopefully these shoes will help with his walking! We also went on the ponies and both of the kids loved it. They both love spending time with their Great Grandma. She sure loves them too.

I took Collin to the doctor on Thursday and found out that both of his tubes are coming out of his ears. So, that is what has been bothering him with his ears. We have to give them a little time to come out on their own. Then Collin will have to have new tubes put in.

This week like all weeks looks like it is going to be a busy one filled with doctor appointments and volunteering at Collin's school.

Thank you all for stopping by to check on our little man! We are so grateful for all of our friends!!!
BIG HUGS,
Julie
(Mommy)

Wednesday, April 27, 2005 3:35 PM CDT

Last night was another hard night. Jason and I had to take turns trying to calm him down and get him comfortable. I feel so bad when he is like that. He just does not understand why he is hurting and I know that it is frustrating for him becuase he can not communicate with us what it wrong. This morning he woke up with scratches all over his face. It looks so bad. When I looked at him this morning I just got teary eyed. I hate it that he is in so much pain that he will just scratch until he hurts himself. He is a champ though! He woke up and was ready for the day and did not complain once!

I know that I have told you all that Collin is a fighter but I thought that I would go into more detail today. Collin has been so strong since the day that he was born. He was born 2 months premature and was put on the oxygen right away. They told us that in a couple of days they would try taking him off of it and that they would notify us. That night (the night he was born) Jason came back into my room and told me that Collin was breathing on his own. This tiny little 3 pound baby pulled the tube out his throat and was breathing on his own. From the day that he was born he has had a never give up attitude that continues to amaze me.

When Collin was a year old he could not sit up, roll very well, or crawl. With his never give up attitude he figured out that he could get around by just scooting around on his back. So, for the longest time Collin would get around the house by just pushing himself on his back using the top of his head as a guide. We often got weird stares from people if I ever let him down. I didn't care though I was so proud that he could do that!

When Collin was 2 1/2 we got a change a life donation that was worth about $8,000.00. With this money we were able to get his walker, a bath chair, a stander, a ball pit, a vestibulator swing, books, puzzles, a wheel chair ramp, and a foof chair. We are so grateful to the wonderful people that did this. We have no idea who they are but we are grateful! With all of this equipment I was able to work just as hard with him at home as they were at therapy and school. We were told that Collin would not ever walk or do much. Well, Collin proved them all wrong!!!!

We have since been able to donate the stander to someone else who needs it now becuase Collin does not. We still have his bath chair so if you know someone that is tiny and in need of one please contact me. We are also looking into giving the foof chair to someone. We are trying to pass on the charity that was given to us.

Anyways, When Collin was 3 years old he started to sit up by himself. I did not need to place pillows around him. Then he started to crawl well more like "bunny hop" and before we knew it he was pulling to stand on things. This was all in the same year! I was so amazed at his determination to do something. He would just sit there and work at something so hard until he could do it. He would use so much energy to do the smallest of things and it would just wipe him out. His never give up attitude did not stop there...

When Collin was 3 he started public school. My tiny 20 pound baby in a huge school with BIG kids. Mommy was terrified! It was just what Collin needed though. He LOVED seeing the big kids on the playground. This pushed him even more. I will never forget the day that I walked into school to pick him up and there he was walking down the hall with his walker. Of course he was struggling BUT he was doing it! I CRIED!!!! His never give up attitude pushed him to master the walker and learn how to turn and move with it with ease. Now he can chase after the big kids on the playground.

He is an amazing boy. I know that he is so special. In these past years with Collin, his never give up attitude has taught me more than I had learned in a life time. He truly is my Hero! Every day is a struggle for him. He has to fight through the pain and he does it with smile on his face. He touches everyone that he meets and he is an insperation to us all!

BIG HUGS,
Julie
(one proud momma!)

Tuesday, April 26, 2005 11:51 AM CDT

HAPPY BIRTHDAY REGAN!!!!!!!!!!!!

I can not believe that she is already 1 year old. Time goes by way to fast!!! It was so hard to decide wether or not to have another child. There is a 25% chance that any child that we would have could have TTD. I can't explain it but I felt this prompting that a little one was waiting in Heaven to come down and be with us. It was as if God was tapping me on the shoulder saying it is time. I am so grateful that we did! She is such a little sweet heart. She is so good to Collin and loves him so much. She misses him when he is at school and she loves to go and pick him up. I love to see them when they are loving on each other. I can not believe that I have such amazing children!!!!

Collin is doing a little better. We started him on 3 new meds. and we took him to the doctor yesterday. After his treatment he seemed to be feeling a bit better. Last night he even got some sleep. Of course, he did not sleep the whole night through but he did much better than he has. I am praying that what we are doing now will keep his pain managed and under control. I hoping that Collin has a good day so that we can go to Disney Land this afternoon for Regan's birthday.

Thank you all so much for your prayers for my sweet little boy! Your love and concern means so much to all of us. The friends that we have made through CB are amazing!
Thank you!!!!!!!!!
BIG HUGS,
Julie
(mommy)

Sunday, April 24, 2005 9:45 PM CDT

Hi~
This weekend was a good one. Friday we just stayed home becuase Collin was having a hard day. So, no Disney Land. They had to order his steroids so we have not started them yet. I know that once we start them he will be a different boy.

Then on Saturday we went to my mother's house and spent time with her in Apple Valley. It was nice to spend time with her. The kids love seeing their Poppie. We went to the pet store and got toys for Poppie's dog and we looked at all of the fun animals there. Then we went over to the Mall and walked around. We had LOTS of fun!!!

Collin had a VERY hard night last night. He was up so much in pain. This was a bad one. I hate nights like this becuase I have no idea what is going on and I am not sure how to make him feel better. He is such a trooper.

Today we went to church and then latter this afternoon we had a birthday party for Regan and Grandpa. (Regan's Birthday is on Tuesday.) Regan had LOTS of fun opening presents and playing with them but she LOVED the cake. She had a hard time believing that no one was going to stop her. She made a BIG mess and loved every second of it. We all had lots of fun watching her. I can not believe that she is already a year old. Time goes by way to fast.

Also, I just wanted to tell you about something fun that we did at church. We had a Locks of Love hair drive. People were told last year to start growing their hair out. (My hair is not long enough yet BUT I will chop it off and send it in.) We ended up getting over 1,700 inches of hair donated!!!!!!! I am so excited!!!! This will benefit so many people. People like Collin and his friend that can not grow hair or his friends that have lost their hair are the sweet people that benefit from such wonderful acts of kindness. THANK YOU to all of you that donated!

Thank you all for stopping in to check on Collin. We are so grateful for your love and support!!! Be sure to stop by and sign his guestbook!

BIG HUGS,
Julie
(Mommy)

Here are some pictures of the birthday girl!






Even Collin got a toy!

Thursday, April 21, 2005 4:32 PM CDT

Thank you all for your prayers and support. We are so lucky to have so many people that love our family so much. Regan is doing much better with the new medication. She slept a good bit of the night!!! YEAH! Today she is starting to eat again and is getting back to her silly ol' self. It is so nice to have her feeling better. She is still not 100ut hopefuly she will be by Sunday for her birthday party.

Collin on the other hand had a very hard night. He was up in pain most of the night. We are going to have to start him on another steroid treatment tomorrow. Steroids are no fun! :( Collin is always a trooper though. I am so lucky to have such a wonderful little boy!!!

I have to tell you a this... today I walked out and Regan was sitting in Collin's lap and Collin was giving her kisses on the face! OH I love it! They are so sweet to each other (sometimes the other times boy watch out!)

BIG HUGS,
Julie
(Collin's mommy)
Here are some new pictures of the kids

DIVA DIVA!!!!

Our Little Man!

Tuesday, April 19, 2005 10:39 PM CDT

Well, I wish that I could continue with wonderful entries BUT that is not the case today. The past couple of days have been hard. Collin is doing pretty good. His allergies have been acting up, he has a bad cough, and he has been unable to go out much but other than that he is doing good.

Regan on the other hand has had a very hard time. Last week I told you that she had a double ear infection. Well, the antibiotics that they gave her for the ear infection caused her to get thrush as well as a yeast infection. My poor littl girl is in so much pain. I feel so bad for. We started her on some other medications last night but they do not seem to be working. She does not want to eat and she is having a very hard time sleeping. So, yes we have had several sleepless nights with Regan and Collin again.

Also, I want to you all to keep my grandmother in your prayers please. The past week she has been in the hospital and they were treating her for flu like symptoms. Today they came back to my step mom and her brother and sister and told them that they think that she has liver, lung, and brain cancer. Grandmother does not understand alot right now and is out of it. I worry most of all about my sweet step mom and her brother and sister. Tomorrow they meet with the doctor to discuss their options. Grandmother is very old and has lived a long and wonderful life. She is a very sweet and caring woman. PLEASE keep her and my step mom in your prayers.

BIG HUGS,
Julie
(collin's mommy)

UPDATE~~~~ Wednesday
Well, another hard night. Regan was up ALL night in pain. Poor thing I felt so bad for her. She would be up for hours at a time. Jason came out to give me a break and then Collin woke up in pain. So, I spent the rest of the night in Collin's bed trying to comfort him. This morning when he woke up I noticed that last night he scratched his head so hard that the little hair that he had in the back fell out. I took him to school and shortly after had to return with pain meds. Then I took Regan to the doctor. The doctor took one look are her and just said "oh that poor child." He gave us a new RX that will hopefuly work this time. It is supposed to be very strong.

It has been a very hard day already BUT on a good note Collin did get some "Happy Mail" today from Devin and his sweet family. We are so grateful. Today was a day that we realy needed it! Both of the kids like the bee spounges the most. It is cute to see them walking around with them.

Also on a good note... Collin took 11 steps on his own at school today!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Talk about a Rock Star! We are so proud of him. Who said he'd never walk.
Thank you all for your support and love

Sunday, April 17, 2005 6:59 PM CDT

This weekend was LOTS of fun! It was nice to have a weekend were Collin was not in much pain. We have not had one of these in a while. Both of the kids were GREAT all weekend!

Friday we went to Disney Land of course! Collin was able to ride on some big boy rides for the very first time!!! YEAH COLLIN! Regan got her first taste of popcorn. We were waiting for the boys and she saw someone with popcorn and decided that we needed to have it as well. She sure thinks she is BIG!

Saturday we didn't do much at all. It was so nice to just relax and spend time with the kids at home.

Sunday we went to church and in the afternoon we went to a friend of ours house for lunch. Their little girl is turnig 3 today. So, of course we had to go over and help her celebrate! Collin was a little out of sorts becuase there were so many people. Regan loved all of the big girls and wanted to be right beside them. She is so cute. I can't wait for her birthday next week. It will be lots of fun!



This is a picute of Collin staring out the window. This is often how he has to veiw the world from inside.


BUT as you can see he still is a sweet heart about it. Even when he is stuck inside!



We hope that all of you had just as wonderful of a weekend!
BIG HUGS,
Julie
(Collin's mommy)

Friday, April 15, 2005 2:53 PM CDT

Hi All~
Today is a beatiful and wonderful day here in Sunny southern California! Yes, you might be thinking sun.. isn't that bad. Well, yes of course BUT it is still a WONDERFUL day! Collin had a GREAT day at school and came home in a wonderful mood. Ever since our scare the other day he has been resting and is back up to full strength! Regan is feeling much better and is back to her sassy diva self. We are looking foward to this afteroon because we are going to ... yes you guessed it Disney Land.

I know you must all be thinking man they go to Disney Land alot. Well, let me explain the story behind it. One day we were standing in line to by passes and these sweet women walked up to us and said "would you like to have our three day passes?" Jason and I were stunned and of course said yes. There was only one day remaining BUT they still had the value of $125.00 each so we took them and traded them in for season passes and we only had to pay $25.oo each for year round season passes to Disney Land!!!! Wow how great is that. These sweet women saw our little boy and wanted to brighten our day. They have brightened our day many many times over seeing as how we go all of the time now. So THANK YOU to you wonderful women that I only new for a few seconds.


We LOVE to go to Disney Land because Collin is SOO happy there! It is hard to explain but when we are there it is hard for me to see his disabilities. All is see is a little boy that is so excited to be at the happiest place on earth! We can only spend a couple of hours there at a time becuase of his skin. Luckinly Dinsey Land has been very nice to us these past several times. We try to set aside one day a week for family time. This way we can spend some quality time together as a family. It is also nice to make so many wonderful memories there. Although we might not have Collin forever the memories that we make as a family will last for all Eternity!

Thank you for stopping by to check in on our Little man! He is doing well! I am hoping that this will be a good weekend!
BIG HUGS,
Julie
(Collin's mommy)
Be sure to smile at some one today!
A smile might be priceless but it is precious to those that recieve it!

Thursday, April 14, 2005 12:18 AM CDT

Like always things have been crazy and I have been unable to update. So, here it goes. Monday I went pretty well. We had another hard night with out daddy around to help but we managed to get through it. (I probably got about 3 hourst of sleep on Sunday and Monday night) Jason got home Tuesday night and I was sure glad to see him.

Tuesday I took Collin to his Nuerologist. She says that he looks good and she is going to keep him on the same meds. We have scheduled a MRI for May 9th. We will have to take him to the hospital becuase he will have to be knocked out. I will let you know how the scan goes when that time comes.

Tuesday evening was hard. Jason came home wich was wonderful but Regan was up all night screaming and of course she only wanted mommy. So, it was yes another sleepless night. I took her to the doctor yesterday morning and she had a double ear infection as well as a nasty cold. We got some yummy bubble gum medicane to hopefuly make those ears feel better soon.

Collin hasn't been as sick as his little sister so we went ahead and let him go to school yesterday. Well, when I picked him up from school I noticed the whites of his eyes were yellow. I asked his teacher if he had rubbed his eyes with any food on his hands. (seeing as how is allergic to that) She said that yes he had. While we were there he began to get blisters on his eye balls and his eyes began to swell shut. So, I had to rush him home and start giving him medications to avoid taking him to the hospital yet again. I was on the phone with is doctor all afternoon. Collin was so miserable!!!! I felt so bad for him. I had to cancel his doctors appoitment and have to reschedule. Yesterday afternoon was VERY hard. I had both of them hanging on me and of course Jason had to work late. At about 4:00 in the afternoon I thought that I was just going to break down. The two of them crying and not feeling well on top of no sleep for three days straight. I did cry a little bit but I took the kids put them in the car put a movie on and drove around for about an hour. They both calmed down and it gave me a little time to regroup.

Today has been going much better. I got some sleep last night. Collin and Regan both slept well and woke up in good moods. Collin's swelling was much better and he looked like himself again. Regan's medicane must have kicked in because she is a new little girl.

Tonight I have Collin's open house at his school. I have to work the book fair for a bit and then I will go down to his class room. I love everyone at his school. They all love him so much. He is like a little rock star. We will be at wal-mart and I will here a kid saying "mom thats Collin mom mom look it's Collin that's my friend" I love it!

Have a wonderful weekend!
Julie
(mommy)

Monday, April 11, 2005 11:02 AM CDT

This weekend went pretty well. We were able to go to Disney Land for a bit on Friday. We did have to cut it short though because the winds picked up and got pretty bad. Collin and Regan had LOTS of fun! We road on Buzz light year for the first time. They both seemed to like it. Although I think that the roller coaster is still Collin's favortie. I went on it with him and he was laughing so hard that he would just shake. It was very cute.

Saturday and Sunday we just stayed in for the most part. Collin needed to rest and get back to full strength so we did not go to the park or any of the fun things that we like to do. Sunday morning we did go to church. Collin LOVES church and loves his friends. When we show him pictures of Jesus he just smiles and tries to kiss it. It is like he is saying hi to an old friend. It is very sweet.

Last night was hard. Jason went to Reno for work. So, I will be by myself with the kids. During the day is fine it is just night time that I fear. Regan is teething and well you know the story with Collin he is always in pain. Last night went OK well lets put it this way I'm still alive. HAHA It was rough one of them would wake up then the other would wake up and it was SOOO hard finaly at about 4:00 in the morning everyone was good asleep. Regan was in my bed taking up as much of it as she could and I was beside her with Collin on my chest. I am sure that if some one could have watched they would have thought it to be comical! Today they both woke up in a good mood and Collin was happy to go to school.

This week is going to be crazy Collin has four doctors appointmenst. Today we have to go and see Dr. Dunn Collin's Chiropractor and tomorrow he will see his neurologist.
We hope that all is well with all of our friends! We think of you often and pray for you! Thank you for stopping by and showing us your support and love! We are truly grateful!

BIG HUGS,
Julie
(mommy)

Thursday, April 7, 2005 10:59 PM CDT

Hi~
I have not updated in a while. Things have been crazy. The last couple of days Collin has been in alot of pain. We have been keeping him on plenty of meds. He seems to do ok after the meds have kicked in. Night time is the hardest. Getting him comfortable enough to fall asleep and then hoping that he stays asleep is hard. He is such a sweet little boy. I HATE to see him go through this! I wish that I could just give him a break.

Today we were unable to go to the park or out for a walk. It was WAY to windy and sunny. So, we had to spend the afternoon in. Of course this drove both of the kids crazy. I feel bad for both of them. I feel bad for Collin becuase of all of the limitations that he has to live with. I also feel bad for Regan becuase whether or not she likes it or even if it is not fair she has to also live with Collin's limitations.

Collin has another doctors appointment on Monday. I wish that we could just find something that helped him. I am VERY happy that we are going to the NIH in Maryland in Aug. I hope that as they continue to do research they will be able to find something to make Collin's quality of life much more enjoyable.

I know that God has a plan for Collin and for the rest of us and that with faith and hope anything is possible! Please pray that these wonderful doctors can help Collin and the other people suffering from trichothiodystrophy.

Thank you for your love and support!
BIG HUGS,
Julie
(mommy)
I am putting in some new pics (well they are old but new of the album)

Monday, April 4, 2005 2:38 PM CDT

Hi~
Well, I am very happy to report that today has strated off much better than my last entry. Collin went back to school today! YEAH!!!! He was so happy to be back. When we were walking to school he was so excited that he was shaking. He was very good at school and had lots of fun!
Regan enjoyed having mommy to herself again. After I got back from dropping Collin off she would not let me go. She wanted to be held and cuddled. It was very sweet.
The two of them are so funny. It was only a week but by the way that they both acting you would think that it had been forever. They are silly. I love the two of them so much! I feel so lucky to be able to stay home and take care of them.
When we got back from picking Collin up at school he had mail. His friends Maria, Sammy-Joe, Christian, and Joe sent Collin a card with lots of fun stuff inside. He LOVED IT. I think that he loved the pictures the most though. He kept kissing on them and loving on them. I had to pry the picture of Sammy-Joe out of his hands before he licked (kissed) it to death. We are so lucky to have such great friends all the way from down under!
I talked to Debby today from the NIH. It looks like we will be headed back to the NIH in August for more testing. They are all very sweet there. They have not seen Regan yet so that will be fun. While we are there they will do tests on Regan as well to see whether or not she is a gene carrier.
If all goes well we are planning on taking the kids to Disney Land latter in the day. All weekend Collin rested so I think that he is back to full strength and can handle it. The sun is also being nice today. We have had some overcast and clouds which is always nice. So, if we go late enough I think that it will be good!
Thank you all again for your sweet posts Collin loves to look at all of the fun Tags that you sign with! Thank you!
BIG HUGS,
Julie
(mommy)

Quick update... It is late but I just wanted to drop a note to say that we were able to go to Disney Land this evening. It was LOTS of fun. Both of the kids had fun. We were able to go on all of Collin's favorites.. Small world, dumbo, the ponies, and he went on the rollercosaster in toon town for the first time. He is finaly tall enough to ride on the rollercoaster! YEAH! Collin and daddy had lots of fun on it!
I am posting some new pictures of our day in the photo album. enjoy!

Friday, April 1, 2005 10:13 PM CST

Today has been crazy from the beging. Collin and Regan woke up wanting to go some where. So, we walked down to the park and played for a bit. They had lots of fun. Collin tends to just hang on to me and Regan wants to run all over the place and play in the sand. Collin likes to go on the swings. After we got home they both just started fussing. If Regan wanted a bottle then Collin wanted a bottle. If Collin wanted to be held then Regan wanted to be held. It was hard.

Latter this evening Collin threw up all of his dinner. Jason was feeding him his baby food and all of a sudden we were both running for towels. I am not sure but I have a feeling that we were out to long today. After that he was a little fussy. I gave him pain medication and a little while latter he percked up. We were going to go to Disney Land tomorrow but I don't think we will be able to now. I am sure it would be to much. Not even ten minutes latter after Collin threw up Jason forgot to lock the screen door and Regan went over and pushed on it and fell out. She scraped her head and was SOO upset.

This day has worn me out! I am going to go to bed! I hope that you all have a wonderful weekend!
BIG HUGS,
Julie
(mommy)

Thursday, March 31, 2005 9:58 AM CST

Yesterday was pretty good. Collin had a hard time becuase he was in pain. He was getting very frustrated around 2:00pm. He gets so upset and bites and itches. It is so hard! After I gave him pain medication he settled down. I hate to give it to him all of the time but it seems like lately he has needed it all of the time.

We went to the Mall (yes AGAIN). We road the ponies and went on the quarter machines. We went up stairs in the elevator and had lunch. Collin LOVES all of these things. Collin and Regan's great grandma Jo came with us. It was nice to have her there with us. It seems like we are always doing the same thing this week but hey what ever works. We can not be outside for to long so it is nice to have some where else to take the kids that they like to go.

Latter in the day we went to the park and played. They have a nice shaded area in the sand. So, it is perfect for Collin. Regan is getting so independent and wants to do so much on her own. I keep trying to tell her that she is only 11 months but she just doesn't listen. LOL Yesterday she kept trying to walk off and I had to keep going after her. It is hard since Collin can not walk with out holding on to me. So, I can not let him go and Regan is much faster than Collin. I am happy to say that his skin is doing very well with the sand. I was afraid that after a day or two it would break out but it has not.

Things are going GREAT here! Thank you once again for your love and support! I will post some new pictures. enjoy
BIG hugs,
Julie
(mommy)

Update~ This afternoon I took the kes guess where... to the Mall and I got their pictures taken. They turned out SOOOOO cute. I will put them up in the album.

Tuesday, March 29, 2005 12:14 AM CST

Well, yesterday was a little hard. Collin is out of school for Spring Break and it is so hard when his routine is broken. This is when his Autistic characteristic are noticable. He HATES to have things changed. So, I am trying to keep him on a schedule but it is hard because his little sister is on an oppisite schedule. I can not explain it to him and the fact that we live right across the street from his school does not make it any easier. Speaking of Autistic characteristic Collin has to eat the same foods EVERY day. There are a couple of different things that he will eat but he has to have bannanas for breakfast and he has to have sweet corn and hawian delight at least once a day. If he does not have these food he just wont eat and will throw an awful fit!
So, yesterday we went to the mall and road the ponies and walked around for a while. Collin and I went to the grocery store while Nana watched Regan. It was to windy to go for a walk or go to the park. When it is windy and sunny you can just forget it!
Today looks like it is going to be a little better. It is still a littl windy but not as bad as yesterday. I think we will be able to walk down to the park after Regan wakes up from her nap. Collin is doing better today with not going to school. He is not as aggresive as he was yesterday. This afternoon he has another doctors appointment.
I think that we will probably go to Disney Land on Friday to give them something fun to do. We will see if the weather agrees with us. Thank you all for your kind words and prayers!
BIG hugs,
Julie
(mommy)

9:00pm So, we were able to go to the park and go for a walk. It was so much fun! After I pushed to two of them on the swings then they played in the sand for a bit. Typicaly all they want to do is swing but today it was so much fun to watch them play in the sand. Collin did very well with it. In the past he did not want anything to do with it. I hope that this means that this will be a new fun thing for us to do from now on.

Collin and Regan have been driving each other crazy. Regan is not used to having Collin home during the day and Collin does not want to be at home. When Collin has fits he takes off his glasses and hearing aids. Well, today Collin took off his glasses and Regan grabbed them and tried to put them back on him. Latter in the day he did the same thing and she went for them. I think that Collin thought she was trying to take them. So, he pushed her... she pushed him. The both got ahold of his glasses and started to pull. I ran over and took them away and luckily they did not break. I did how ever have to take Collin to get them adjusted latter in the day.

Those two are so fun together. I know that as they get older and can understand each other a little bit more it will get a little easier. I am so glad that we decided to have another child. It was a very hard decision seeing as how there is a 25 percent chance that all of our children will have TTD. They are both my angels!

Sunday, March 27, 2005 2:47 PM CST

Happy Easter!
This will probably be a short note. This weekend has been GREAT! Last night Collin and Regan slept in their own beds the whole night through with out waking up!!!! YEAH! Jason said that it was a Birthday present to me from the kids. Yesterday we had lots of fun. Regan and Collin found Easter eggs in the back yard, then they played outside for a bit. Collin was able to make his little bike go foward! He puts his legs on the ground and pushes. In the past all he could do was make it go back wards. Daddy and Collin played with the bubbles in the shade and Regan and I ran around! It was a wonderful afternoon. Last night Jason and I went out on a date for my birthday. We have weekly date nights and it helps keep us both sain.

Today has been wonderful as well. We went to church this morning.I am so grateful for Jesus Christ my savior who has given so much to me. I am so grateful for this wonderful holiday that we have to celebrate him! This afternoon we are going to have a nice dinner with family.

BIG hugs,
Julie
(mommy)

Be sure to stop by the album and see the new pictures!

Friday, March 25, 2005 3:52 PM CST

Last night was another hard night. I am not sure what is going on but the longer this lasts the more I worry. Of course no parent wants their child to be in pain and I feel the same way. Today at Collin’s school they had an Easter egg hunt. The big kids helped the “special” kids find eggs and put them in their baskets. Regan wanted to help her big brother. It was very cute. I can already tell that she is going to want to take care of her brother. They sure do love each other and have an amazing friendship already.

This one will probably be short. I have Collin sitting in my lap and he is wanting to help mommy. This weekend should be lots of fun. Tomorrow is my birthday and all I was a day with my family. Sunday we are going to have Easter dinner with the whole family and that is always fun! We hope that all of you have a wonderful weekend!!!!!

Julie
(mommy)
Be sure to check out the album. I put new pictures in it!

Thursday, March 24, 2005 2:43 PM CST

Well, it has been a hard couple of days. The night before last was a hard one. We were up with Collin for about two hours straight. He was in so much pain. He could not relax to back to sleep at all. We gave him pain medication and a little while latter he was able to fall back to sleep but Jason had to stay with him in his bed for the rest of the night. It is SOOO hard becuase he can not tell us what is hurting. So we have to try to guess and do what ever we can to make him comfortable. It just breaks my heart to know that there is something that I can not make better. I woke up that morning with Regan at 6:00 am as usual (I wish she knew that on the nights we don't get much sleep she needs to sleep in). Collin and Jason slept in and did not wake him for school. I was so worried that we were going to end up back at the hospital becuase he had some infection. You see I have a VERY bad cold and if it is this bad in me who knows what it would do to him. Luckily though he woke up in a GREAT mood. He has not caught me cold yet. I guess he was just in pain. He was good at school and latter in the day I took him to the doctor for his treatment and he was fine there as well.

Last night was better. He still woke up but it was nothing like the nigt before. Today he was great at school. He took four "real" steps and did a very good job on standing. It was nice and cloudy today and he had lots of fun on the playground. (that is his favorite part of the day) Regan and I are at the school alot helping out. Regan gets so sad when she sees her buba and can't get down and play with him. It is so sweet. As soon as we walk through the doors at school she will yell BUBA!

Yesterday was hard becuase all of the parents were signing their kids up for kindergarten. Collin would be starting with them this year. Although he has already been attending the school for two years now in the special ed program and has a wonderful teacher. It is still hard at times becuase you wonder what it would be like or feel like. I know that it sounds funny but it seems like it is the little things that get to me now. It is weird the "big " things don't bother me as much but it is the little things. Like when people ask if Collin and Regan are twins. I know that it is hard to tell but for some reason it bugs me. I will just smile and say no they are four years apart and then the look they give me is even worse. When Collin's teacher told me that a boy on the playground called Collin stupid one day. I started to cry right there.

Oh look at me go. I guess I should stop venting! Thank you all for you love, support and prayers. They mean the world to us all!
BIG HUGS,
Julie
mommy

Tuesday, March 22, 2005 8:24 AM CST

We are home!!! It was nice visiting family in Texas but it so nice to be home. We had lots of fun with Paw and Maw and all of those crazy cousins and aunts and uncles. On saturday Maw put together a BIG party for all of the birthdays that are coming up. The kids went on an easter egg hunt. Collin was not excited by it much. He got one egg and was good. He then got on his daddy's shoulders and did not want to come off. Regan on the other hand LOVED the egg hunt. She loved picking up the eggs and shacking them. She also loved carrying around her basket. It was very cute. She is getting so big. She is only ten months and she is already running! After the egg hunt we went on a hay ride. Collin was not able to ride on the traylor with the hay becuase of his allergies and the sun was not being nice. He had lots of fun ridding up front in the truck with Paw and daddy. Regan had a blast in the back. I think she just liked pulling the hay off and throwing it at me. Over all is was a very short but wonderful visit. It is always nice to get to spoil and play with me nieces and nephews.

Of course as soon as we got home yesterday it was back to normal. Last night we had to take Collin to get the stiches out of his head. He was such a trooper. He didn't even cry. I know that Collin is going to be so happy to go back to school today. This afternoon we have yet another doctors appointment.

Things are going good right now. We are just excited and getting ready for Easter! We hope that all of our friends have a very wonderful Easter!
BIG hugs,
Julie
(mommy)

Saturday, March 19, 2005 1:53 PM CST

This will be a short entry. We are in Texas visiting family right now. So, that is why I have not had a chance to write. Collin is doing ok. His skin is having a very hard time with the climate and tempature changes. His allergies are also acting up but other than that he is going ok. He is having lots of fun with his Maw and Paw and all of those crazy cousins. Regan is having a little bit of a harder time. She is not sure about things becuase she is in a new place. She is having a hard time letting go of mommy. Collin has gone on the four wheeler with daddy several times already and the kids and I have been on the golf cart several times. It is fun to see the cows and have lots of pretty things to look at.

Collin's head is healing nicely and it does not bother him one bit! He is such a trooper!

Oh, we went to Disney Land on Monday for our family night. We had a much better time than the last time we went. We stayed for only a couple of hours but they let Collin go to the front and they were much nicer. The kids had lots of fun on Dumbo and small world!

We hope that all of our friends are doing well. We will make the rounds when we get back.
Julie

Sunday, March 13, 2005 5:00 PM CST

Well, I guess I will start with the good. Yesterday we went to the foundation for the junior blind. We had a meeting for the parents advisory board. It was very nice to see other families from the foundation. We were even able to check out a brail book and a fun toy for Collin to play with. He LOVES the book. I think we are going to have to buy one for him.

More good news... Collin slept through the night last night!!! Woooooooooohooooo! I love it when he sleeps well becuase his little body needs it so badly. Shoot so do mommmy and daddy BUT half of the time we can't sleep becuase we are so worried about why he is not waking up.

Ok, so to the not so good stuff. Today my sweet little boy who tries so hard to walk and do big things fell and hit his head on the dinning room chair. He busted his head pretty hard. We had to take him to urgent care and they had to put three stiches in his head. It was so hard. They had to strap him to a board so that he would not move. It broke my heart, even daddy started to cry. Collin is a tuffy who has been through ALOT but I think that he was at his limit. At least when he has surgeries he is asleep. The amazing thing is like usual his attitude. He was crying and mad and having an awful time the whole time. As we went to leave he blew the doctor and nurses kisses! What a kid. He is so forgiving and loving. He didn't understand what was going on. All he knew was that they were hurting him and holding him down yet he still gave them kisses as he left. I hope that I can be half the person that he is some day. He is my Hero!

Julie
(mommy)

Friday, March 11, 2005 11:31 PM CST

Well, I wish that I could say that Collin is still sleeping well BUT that is not the case. The past two nights he has been waking up. It was not as bad as it has been in the past. Jason was able to just lay with him and comfort him and he would fall back to sleep. Luckily they were not up all night pull your hair out kinda nights.

Collin and Regan are starting to get frustrated with each other. Regan will take something from Collin and he is starting to try to get it back. He can not speack so he is starting to bite again. I know that it is not to be mean but just out of frustration. He has not bitten Regan but he has bitten mommy and daddy. I am not sure what to do about this. I can't say that I don't blame him at times. I am sure that it must be so hard to be in pain or frustrated about something but and not be able to say it.

Today we went to Collin's Poppies house. It was nice to see her. It was a much longer drive than we had planned on. (We hit Vegas traffic) So, we were only able to have dinner with them and then we had to head back home. Collin started itching bad and getting tired so we had to leave sooner than we had hoped.

Tommorow we are going to The Foundation for the Junior Blind for a parents addvisory meeting. On Monday we will be going back to the Foundation to present the money that we raised from the Marathon. We ended up raising $2,256.56. I am so excited to present it to them.

Thank you all for your kind words and support! Have a wonderful weekend!

Wednesday, March 9, 2005 11:03 PM CST

Today was a good day. Yesterday on the other hand was hard. Collin did good at school and came home in a good mood. Then I made the mistake of taking him out to early. You see we typicaly go for walks a little latter in the day but yesterday I took Collin and Regan out for walk at 1:00. As soon as we started to go Collin started to scream. He was crying tears and having a very hard time. So, I took them both back to the house. As soon as we got in Collin started itching all over. We were not outside for more than a couple of minutes and it was enough to have him going crazy. I put the steriod cream on him and he calmed down. It is so frustrating! Luckily Collin is not as bad as some of his friends but it still drives me crazy. At school he does ok becuase their rescess time is at 9:00am so the sun realy has not come up yet. I feel bad for Regan as well becuase this limits the things that I can take her to do. I hate the fact that we live minutes from the beach but Collin has never been. In four and a half years he has never had the chance to go the beach and play because the sun is to harsh there.

On a good note.... I have been taking Collin to the chiropratcor the past two weeks. I have started to see a difference. The past three nights Collin slept through the night! That is huge. Typicaly Jason or I have to get in bed with him or tag team walking around becuase he is in pain. I am so excited! This is the first time in his whole life that he has gotten several good nights rest in a row. YEAH!!! I am sure that this will help him in many areas! I am so happy that we found Dr. Dunn.

Thank you all for your kind words. Just so you know I did call and complain to DisneyLand for the way that we were treated. The person I spoke with me told me that they would acomidate us next time.

Julie

Sunday, March 6, 2005 6:18 PM CST

Well, WE DID IT! We finished the LA Marathon 5/k this morning. It was so much fun. There were so many people there. It was so exciting to see all of the different groups that were there to raising money for their charities. There were so many special needs people. I was very impressed by the dedication that they had to finish the race! At times it brought tears to my eyes as I watched them when we passed by them. They would have the biggest smile on their faces.

Collin and Regan both had a fun time. Ok, well Regan slept through the entire race but Collin loved it. He loved watching all of the people around us. He also loves holding mommy or daddy's hand. (Who ever was not pushing!) It was so nice to do this as a family. It felt like all of us were supporting Collin and the Foundation. We got in under an hour wich was my goal. Next year I am hoping that we can run it and get an even better time! (A girl can dream right)

I have to admit It made me feel GREAT to do this today. I feel like we are always depending on everyone else to help us with our child.... Doctors, therapists, teachers, and all of the other wonderful people that help with Collin. It was nice to pass it on. Do something for one of the Foundations that has helped us out so much! I might not have riches to give myself but I know that by doing small acts of kindness we can do great things! We raised more money than we had hoped for. Our goal was $2000.00 and I know that we have raised more than that. I will know the final number this week after we have recieved the rest of the donations.

Thank you to all of you that supported us in the marathon!

Hugs,
Julie
(mom)

Saturday, March 5, 2005 0:30 AM CST

We went to Disney Land and it was bitter sweet. We went into get an assistance pass for Collin. The woman told me that they had changed their policies and was very rude. She told me that I couldn't just skip to the front of the lines and that I needed a "real" reason to be able to get assistance. I had Collin next to me in his chair and she still said these things. I was so mad!!!! We have been to Disney Land MANY times and never have we been treated like this. We have to be careful and not have Collin in the sun for to long. Collin even has a shade on his wheel chair. Most of the lines at the Park are in the sun. So it has always been nice when they have let us go in the back or through the special handicap entrance. Now this woman said that they could not do this. We left the office upset and Jason wanted to go home. We ended up staying and going on some rides but mostly going to the shows inside. I am hoping that the next time that we go things will be different. We got annual passes again so I know that we will go alot. I guess I will just have to bring all of his medical records with us next time.

Other than that it was a nice day. Collin had fun and Regan liked it as well. It was her first time to go. It was fun to see the two of them and how they reacted to things. I am going to try to down load some pictures from our day. I just wanted to thank you all for your kind words in the guestbook. Your love and support is so wonderful! Thank you! I will let you all know how the Marathon goes on
Sunday.
Julie
(mom)

Wednesday, March 2, 2005 11:30 AM CST

Collin is doing a little better but he still seems to be in pain. It is so frustrating not knowing exactly what is going on. We are planning on taking Collin and Regan to Disney Land Tommorrow. It has been nice and cloudy the past couple of days. So, it will be nice to take Collin out for a bit. We just have to keep him shaded and lots of sunscreen. Collin LOVES Disney Land! We have not been in over a year becuase of his sister coming into the world. Now Regan is 10 months old and big enough to go for the very first time. I hope that it all works out ok.
I took Collin to the Doctor on Monday for his first treatment. He seemed to really like it. I am hoping that this is going to help him in some way. We will be returning today. Dr. Dunn has high hopes for Collin.
I am sorry to be so short but I have LOTS to do today. I did want to wish our special friend Sammy-Joe a very happy Birthday today! http://www3.caringbridge.org/ok/sammyjoe/ We love you tons! Thank you for checking in. I will let you know how DisneyLand goes!
Julie
(mom)

Sunday, February 27, 2005 10:17 PM CST

Hi everyone~
Collin is doing ok. This weekend was hard. He seemed to be in alot of pain. It is so hard at times because he can not tell us exactly what is going on. We have to do our best to guess and give him lots of cuddles.We also have to give him pain medication. Sometimes it gets very frustrating and I just want to yell! Why can't I understand him? Why can't I make it all go away? Why can't I just give him one day to be a "normal" Healthy boy? The funny thing is that I think these things but then I look at Collin and he is perfectly happy just the way he is. As a parent we often times want to make everything better and make all of the bad stuff go away. I know that I have learned more from Collin in these short four and half years than I have learned from anyone else in a lifetime. He is my hero. I truly want to be like him when I grow up!(smile) Even on only a couple hours of sleep from a hard night of cuddlling I would not trade a second of it. Collin is so special. He truly is an angel that was sent down to us. At times I don't feel that I am worthy to take care of such an amazing little boy. God has so much trust in me to let me take care of one of his special little soldiers. We have another doctors appointment tommorow. I will let you know how it goes. Oh by the way our fundraising for the Foundation for the Junior Blind is going great! The LA Marathon is this coming up Sunday! I think that we will have raised $2000.00 by then. (that is our goal) I know that Collin will have a blast being pushed across the finish line! Thank you all for your love and support!
Julie
(mom)

Wednesday, February 23, 2005 7:03 PM CST

Things have been going pretty well this past week. Collin went to his dermatologist yesterday and his skin is looking good. (Well, as good as his skin can look.) He is still on steroids and is responding well to them right now. Of course he is still itching and having "issues" with his skin but it is doing much better than last winter. The rain has not helped much with his skin but sunshine is soon to come(hopefully). Sunny California has been anything but sunny lately.
We have decided to start taking Collin into see a Chiroprator. I have a sweet friend (Maria) who also has a child with TTD. She did see some sucess from bringing her son in the first months. Hopefully we will have some sucess from this. I would just love it if Collin could get a good nights rest. In his four and a half years I don't think he has had one solid good nights sleep. He is often times in to much pain.
Collin is recoveying well from his cold. This past weekend was hard but he is such a champ. He ended up getting a nasty cough and an ear infection. Of course becuase of the ear infection he did not want to wear his hearing aids. He did go back to school and was so happy to be there. I am so grateful for such wonderful people that take such good care of my little boy. His teacher, aids, therapists, and even the women in the office love him so much and cheer him on every step of the way!
That is all for now.
hugs,
Julie

Thursday, February 17, 2005 3:25 PM CST

I have not written in a long time. Things have been crazy around here. Collin is doing GREAT!! I am happy to report that since the last entry we have not had any trips to the hospital!! Yeah! Collin is donig very well at school. His favorite part of the day is when he gets to go out on the playground and play with all of his friends. He also like walking up and down the halls in his walker. I am happy to anounce that Collin is getting MUCH better at feeding himself. If I put the food on the spoon then he will bring it to his mouth. He is getting to a pointd were he love food. For a while we had to hold him down to feed him and it would often times take up to an hour to feed him. Now I can not get the food to him fast enough. He will to into the pantry and pull out a jar of food and bring it to me. Collin is also starting to have BIG tantrums if he does not get his way. I am torn on this one. I am happy that he is finaly at a point were he understands things enough to have a fit but of course on the other side I want to get it under control. For example. If we go to the Mall and we do not stop to ride on the ponnies then collin will through a fit and cry until we get in the car. I am happy that he understands what the ponnies are enough to through a fit but it is not what I want he to learn. Health wise we are doing good. (knock on wood) Collin's little sister who is only 9 months had started walking. I think that this will give him the extra puch to start walking on his own. I know that he will do it some day!
We have been raising money for the Foundation for the Junior Blind so far we are up to $1200.00 and we still have three more weeks to go before the LA Marathon. If any of you would like to donate to this worthwile cause please contact me and I will get you any information that you need. For now we are walking every day and getting ready for the big day!
Thank you all so much for the support that you have shown in the guestbook. Your love and support means so much to our family!

Julie (mom)

Tuesday, January 25, 2005 11:06 PM CST

I have not writte in a while. I just wanted to update everyone on all of the crazy things that have been happening. We did go to the eye doctor like I had mentioned in my last entry. Everything is still ok for the time being. Things have been crazy though. Two weeks ago Collin had to be taken to the hospital in an ambulance. He had an allergic reaction and we were not sure what is was from. He had blisters on his eye balls, his eyes swelled shut, and he had a rash all over his face. We know that he is allergic to peanuts and codine but unlike with the peanuts Collin did not have a problem with his breathing this time. It took a couple of days for the swelling to go down and for him to be back to 100%. He sure did worry me. I know that there is a chance that I could loose him sooner than I would like BUT when things like this happen or when he has to have surgery it puts everything into perspective. I can not lie it scares me to death. I love my little boy soooo much and don't know what I would do with out him. If that was not enough the next week I get a call from Collin's school to let me know that when the kindergartens were playing with Collin on the play ground and one of them pulled his walker over. He busted his nose on the ground. Luckily it was not broken. He just looked pretty sad when I picked him up. I am amazed though at how forgiving he is. I know that if someone were to hurt me even if it was an accident I would have a hard time with them. Not Collin! The next day he was out on the playground chasing and playing with his little friends. I hope that some day I can be half the person that Collin is today. So, if all of that was not enough two days latter Collin was crawling and fell and busted his lip. We had to take him to urgent care. They felt that it might need stitches but since Collin would need to be put to sleep to do it they were hesitant. They ended up putting "crazy glue" on his lip to help it scab over. They also put him on an antibotic to help with infection. Things have slowed down this week and hopefully the rest of this month will go smoothly. On a happy note. Collin and I are going to be in the L.A. marathon. We are going to be raising money for the foundation for the Jr. Blind. This his a Foundation that helped Collin so much at a critical time. I will always be grateful to them and will continue to raise as much money as I can for such a wonderful cause. If that is not enough I am also heading a handicap awariness booth at Collin's school carnival. We are going to have a wheel chair, walker, adapted toys, and lots of picture for the children (as well as the adults) to touch and look at. We will also be doing face painting and all of the money that we raise will go to the four special education classes at Collin's school. I am trying to do all that I can to help all of these wonderful people that have done nothing but love, support, encourage, comfort,teach, and believe in my little boy. We were able to donate $2,000.00 to the Foundation for the Jr. Blind last year. We got a corportation to donate this money. We were also able to get $2,000.00 for the four special education classes at Collin's school. We also got this money donated by a corporation. (Enterprise rent-a-car) I am so grateful for all of the love and support that we have been recieving from all of you in the guestbook! We are doing great and enjoying this California crazy weather! I just hope that we will be ready for the marathon by March 6.
Good bye for now!
Julie
(mom)

Thursday, December 23, 2004 10:49 PM CST

This past week Collin has been out of school.We have had fun although it is very hard for him to change his routine. He is a creature of habit. Regan has LOVED having her big brother around all of the time. I am still amazed at how well they get along. Collin is such a good big brother. I wasn't sure when I was pregnant if Collin would understand that Regan was part of our family. I am amazed at how much he does understand and how loving he is to her. He is always giving her hugs and kisses. Every day this week we have been walking to the park and going on the swings. They both love it so much. Collin loves to go high and Regan doesn't go as high but she loves to watch her brother swing by her. We are all very excited for Christmas. I think that Collin and Regan are going to have lots of fun opening their presents. Monday I am taking Collin to the eye doctor. He has seemed to be bothered by his eye alot this week. The doctor said that he would need surgery eventualy. I just hope that it is after the holidays.
Julie
(mom)

Thursday, December 16, 2004 10:23 PM CST

I guess I will start from the begining. Collin was born July 4, 2000 almost eight weeks premature. He weighed 3 pounds 8 ounces and was 16 inches long. We knew right away that something was wrong. When Collin was born he looked as if he had been burned in a fire.(See Collin's picture in the gallery) We soon found out that Collin had Ichthyosis. Ichthyosis is a family of genetic skin disease characterized by dry, scaling skin that may be thickened or very thin. Dermatologist estimate that there are at least twenty varieties of ichthyosis. We also found out during Collin's one month stay in the NICU that he had bilateral congenital cataracts. When Collin was five months old he had his first surgery on his right eye to remove the cataract. Shortly after he had surgery on his left eye to remove the cataract after wich he developed post-operative glaucoma. Then he had his third surgery to relieve the pressure in his eye and take care of the glaucoma. After his eyes had healed it was time for his contacts. It was so scary to put a contact in his tiny little baby eye. I will never forget the first time that he looked at me. It was amazing! The first year of Collin's life was filled with non-stop doctors appointments. When Collin was about seven months I told his pyhsician that I was worried because Collin was not holding his head up and that I though he had Cerebral Palsy. The doctor agreed and we started searching for the perfect doctors and therapist to help us with our little angel. Collin's neurologist told us that because Collin had so many different symptoms that he must have a more specific diagnosis. So, the quest to find out exactly what was going on with Collin began. We went to several different hospitals and met with their genetics teams. They were unable to help us. In the mean time Collin was hospitalized several times. We found out that Collin was having problems with urinary tract infections because of vesicular ureter reflux. It was corrected with a ureter reimplantation procedure. Finaly we had good news from Cedars- Sinai Medical Center. They took a sample of Collin's brittle hair and came back to tell us that Collin had Trichothiodystrophy. Finaly after two years we had an answer to our prayers. It was bitter sweet. It was wonderful to finaly have a name to it but it was so frustrating because there was not much information avalaible. When Collin was three we were flown to the Naional Institute of Health were they did research on Collin. We were able to have most of our questions answered. Trichothiodystrophy (TTD) refers to a heterogeneous group of autosomal recessive disorders that share the distinctive features of short brittle hair and an abnormally low sulfur content. A few of the associated signs and symptoms of TTD that Collin suffers from are sparse or absent eyelashes, eyebrows, ichthyosis, eczema, mental retardation, neurosensory hearing impairment, growth retardation, cranial dysplasia, and cataracts. Collin is now four and a half years old. He is doing well. He weighs 21 pounds and is 33 inches long. He can see with the aid of glasses and can hear with the assistance of his hearing aids. To date Collin has had seven surgeries. We were told that Collin would never crawl or walk. This past year Collin started walking with a walker. Hopefully by the end of next year he will be walking all by himself. Although he can not communicate with words he is very social. He is an amazingly happy boy. He is a great BIG brother. He loves life and has an inspiring attitude considering all that he has been through.

Thursday, December 16, 2004 11:18 AM CST

This page has just been created to share our little boy's story. Collin was born with a very rare disease called Trichothiodystrophy. It has been a very long and hard road but well worth it. I look foward to sharing his story with you.

Julie
(mom)

Thursday, December 16, 2004 11:18 AM CST

This page has just been created to share our little boy's story. Collin was born with a very rare disease called Trichothiodystrophy. It has been a very long and hard road but well worth it. I look foward to sharing his story with you.

Julie
(mom)

Click here to go back to the main page.

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