Thursday, October 23, 2008

All Clear!

No visible tumor!!! Yeahhhh. We feel so good. He still has a lot of fluid around his brain which causes the head to grow but the doctor cannot guarantee that it is not normal growth at this point so in three months we will check his head size again and if it is still increasing rapidly then according to the doctor we may have to do something about it. Which means a shunt! For us as long as he in not showing any outward signs of hydrocephalus i.e. vomitting or balance issues, we are not going to do anything about it.
Great day overall! We are just so emotionally drained now!!!

Could not have gotten better results!!!

Tuesday, October 21, 2008

Fasting for Dawson!

Dear Friends and Family,
I have rewrote this email in my mind over and over again the past few days so lets hope it goes smoothly. I feel like we are forever in need of help or something but this is an important week for us. Dawson is scheduled for his MRI on Thursday, morning October 23. We will be getting as many people to fast as humanly possible.
First let me say a few things, the last couple of months have been a struggle. It is hard to explain what I have been feeling but Dawson's whole ordeal has tested or family or faith and our lives. I live with constant worry, that this tumor may came back that it metastasizes into cancer or that Dawson doesn't progress like he should. Our counselor is our ultimate help, she reassures us, comforts us and helps us get through these worries. David has done a lot better than I have but I think I have gotten to a place where I live for today and try not to worry about tomorrow. I have faith that Heavenly Father knows how I feel and understands my fears and has a plan for us all. If you think about your ultimate fear most of us would say loosing a child. The first day we found out about his tumor I could not help but believe we were going to loose our baby, so for about 24 hours I thought the worst. The grief I felt was the most horrendous full body pain I have ever experienced and I have been trying to overcome it ever since. I think I have had this MRI sketched in my brain as D-Day for all this time and it will ultimately tell us what are next step in this awful roller coaster of brain tumors will be.
This MRI is important for many reasons:
It will show us if there is any tumor left! This is crucial in his overall survival rate, if not fully ressected it has a over a 60% chance of growing back! If not fully ressected in has over a 50% chance of Metastasizing into cancer.
It will show how is brain has recovered from this surgery.
If there is any brain damage.
If his ventricles are shrinking.
If his fluid amounts are at a safe enough level to avoid having a permanent shunt put in.
David and I both have talked about the amount of support we received while we were in the hospital and it was amazing. Of course we would not wish this upon anyone but the support we felt was like nothing we have felt before. We felt like we could single handedly take on an army with the backing of all of our friends and family. It is so empowering to feel the power of fasting during such an emotionally time. We know it made a difference in our "Baby D" and his outcome. We know we will never be able to thank everyone personally for all that was done but take this as a personal THANK YOU from the Milius family.
Now some good news, Dawson has really seemed to excel since his surgery in his vocabulary, his walking, his hand-eye coordination, really everything. It is a true miracle to see this kid and we hope that everyone gets a chance to witness his special spirit, so come visit.
The MRI process is a long one, he will have to be put to sleep to avoid moving while in the machine then the MRI takes about 1.5 hours. It takes so long because they are doing it with contrast and without so they can see all blood vessels, etc. We will let everyone know what is going on asap but just assume no news is good news!

Thanks so much to everyone,
Kristin Milius

Sunday, October 19, 2008

Pumpkin Patch Fun!

This is the kids and David at the Pumpkin Patch field trip for Brielle's Preschool. The kids had so much fun it was awesome. Even Dawson started to enjoy himself except for the hay, which he was not a big fan of! Take a close up look at the pictures some of the facial expressions are hilarious!! (They even brought a sack lunch and ate at the patch!) The top picks are of Brielle and her "vest friend" Skylar. Also among my kids are Kylie and Dylan Langford!

Sunday, October 12, 2008

Play Day!

Well my sister Karly has had some really bad morning sickenss with her second pregnancy so I took her little girl Lyla for the day! It was so much fun we went to Arctic Circle and played and had lunch the went to the 99 cent store and bought some junk. She is so cute and my kids love her so it was not a problem at all. Though gettting two almost two year olds in and out of the car was a bit interesting, I do not know how parents of twins do it.

Brielle's first haircut!

Well I have always trimmed her hair and cut her bangs but I decided it was time for a professional. See her hair is so thick it is hard to even brush, let alone wash. We were getting very frustrated and fighting about it, (her and I) and so it had to come off. VERDICT: We love it! She looks so grown up and it is 100% easier to do and wash. Leave her a comment and let her know what you think!

Dawson helping me with my work!

Dawson likes to climb in my work bucket and "help me"!

Wednesday, October 8, 2008

How I love this BOY!

I know recently my posts have been, well depressing, so this post is going to be all positive. I love my baby boy. He is like an extension of my heart wrapped in this perfect little body! When he smiles it melts my heart and we he cries I want to fix it. It is really hard trying to being a parent to him right now because of all he has been through. I want him to be happy, I want him to have everything he wants and I never want him to be sad! As all of you can imagine this does not always coincide with good behavior but I am not completely ready to discipline him. I may irreversible screw him up but lets face it who in the world is not despite their parents best efforts!! And I don't care that he has a big head I think he is perfect! (Disclaimer: I love Brielle just as much and feel the same about her I just had this picture that I wanted to post so that is why it is just about Baby D!)


Good ol' Ayso soccer! My little brother Ryan is really good we went and watched his game a few weeks ago and as you can see had a great time. Dawson loves relaxing in his chair, Brielle had a good time with cousin Lyla and Auntie Kaelyn and Ryan did great.

Wednesday, October 1, 2008

Found this on someone elses BLOG! IT IS PERFECT!

Things that you can do for someone you love to be a support and friend through their grief. I know a lot of people just "don't know what to say/do" so they don't do anything. Not doing anything is the wrong answer. Hopefully this list can help you help the ones you love in their journey of Grief.

1. First and foremost TALK about the loved one. Even if it uncomfortable at first, it will become easier.

2. If you didn't know the person at all or very well, ask to hear about them and learn of them through stories.

3. Don't ever put a time line on someone's grief.

4. Saying things like, "They are in a better place." Really isn't comforting. It makes the bereaved feel like the place they had with them wasn't good.

5. If you don't know what to say, just say, "I'm So sorry you have to go through this."

6. If the person needs to analyze the circumstances surrounding the death, let them just talk and rehash anything as many times as they need to.

7. Don't assume they are ever "better." It never gets better and will be a part of them for the rest of their lives.

8. Don't underestimate how frazzled, abscent minded, spacey grief can make you.

9. Pamper them if you have means. Retail Therapy worked great for me! So did pedicures and getting my hair done, I felt awful on the inside, at least I could try to feel good about me on the outside.

10. Love notes. Emails. Thinking of You cards. Thinking of the bereaved person cards.

I know I did not loose a child but on that horrible day part of me felt like I did. I did not feel like there was a good possible outcome of course to my surprise there was. I still am dealing with all of these emotions, and it's awful!