Tuesday, September 23, 2008

Little update....

Haven had chemo today. She is doing well. She has gained 6lbs though. I wasn't happy with that. BUT good news is she is starting to grow - she has grown 1/2" since one month ago!!!! That's awesome. Blood pressure is great and all of her numbers are where they should be. No more infections.

I have a couple videos from tonight. They are Haven sleeping......this is what we go through ALL NIGHT, EVERY NIGHT!!! It gets worse around 2am!




Sorry it's sort of dark but she's sleeping. Click the arrow to play.




These were done around 10:30pm

Monday, September 15, 2008

Haven shares...


It's rare but it happens....usually Steroid days are filled with attitude and for about an hour she was all in to sharing with Stryder....

Weekend....


Well last weekend we were supposed to go to Gettysburg....but it was way too hot and humid. After playing poker until 1am on Saturday my dad and brother decided to head home and argue politics until 2:30 am!!! Sunday at 9am I was trying to sleep in when my sister banged on the door. She had been trying to get my dad up. So now I was up.....she hung out for 1 1/2 hours and finally my dad got up around 11am!

Gettysburg was canceled but we did something even more fun. We went to the Renaissance Faire. Dad, me, Haven, Katie, Tommy, and Stryder split the cars and headed down. We hung out there for about 4 hours. I was amazed at Haven. I really didn't think she could do it. She walked the entire time - never sat down.

I have a few photos!

Haven and I......she wanted to have our hair in piggy tails.

She had to stand near Stryder at all times. But there was a group playing bagpipe music and she loved it. She followed them everywhere and took Grandpa with her.

Haven picked the people to be in this picture. Aunt Katie, her, Gpa B-Honey, and Stryder

The girls got their hair braided! I haven' t let anyone touch Haven's hair and I was concerned but my dad said she should get it done if she wants it. So I warned the lady about her hair falling out and not to pull to hard.

Aunt Katie's hair....beautiful

Then Haven had to have a Unicorn tattoo. Gpa gave her some money to get it...she picked the colors.

My baby girl is growing up.

Checking on Stryder.....

Awesome.....Bye Stry!

Heading back out to the car. Haven helped Katie push the stroller.

Saturday, September 13, 2008

Saturday

Well today we decided we'd force Haven out of the house and we went to the mall. I probably only go to the mall once a year if that. We were there for at least 5 hours. Haven had a blast and she walked the entire time. She's been so terrified to leave the house for some reason that she comes up with any excuse possible....even that she needs to clean. But we made her go.

While at Kay Bee Toys this lady came up to my dad (I was somewhere but not there) and she just looked at him and asked, "Is she on steroids?" When my dad said yes the lady just burst out crying. Her young daughter had a brain tumor and passed away. She was also on steroids so she was able to see it in Haven very quickly. She took Haven around the store and let her pick out anything she wanted.
So she picked a scrap booking kit and started working on it immediately! Thank you to the lady at the mall - I did not get your name and we really appreciate it. Haven loves it.

I have been looking for shoes for a couple of weeks - I'm extremely picky on the shoes (fit wise). The fit in the store but I do not recommend them to anyone. They are great if I don't move - but my foot slides out of them and I've fallen twice now! Back to searching for shoes tomorrow.

Tonight after we finished with the phone calls to everyone we sat down to a few games of poker - about 4 hours worth.

My dad brought the pennies and started dealing.

My brother.....I really don't have much to say about this photo - he pretty much says it all for me.

Haven helping me out with my hand. She stayed up until 11:30pm helping me out. Needless to say by 1am my brother was giving me a loan so he could go home and start working on his class stuff. I did not win! Katie actually won for the night.

We had a great day. Tomorrow is supposed to be Gettysburg but with the weather forecast to be in the 90's and high humidity I might stay home with Haven and take her shopping for shoes tomorrow. The weather is just horrible.

Hope everyone is having a great weekend!!!

Couple videos




Friday, September 12, 2008

Tommy is here....and Katie and Stryder

Well they've been here for 2 days now. Today my dad took them down to the Inner Harbor.....ha ha ha...they got stuck in rush hour traffic in the rain!!! I love it...someone finally feels my pain in the family!!! I thought I'd throw some pictures up of the group. Dad grilled out for all of us. Stryder loves to run...he's awesome. Haven kept quiet tonight. She hasn't felt very well all day and I guess she had a 4 hour nap and is again back asleep. She had a fever this afternoon. I think Stryder makes her nervous because he likes to run and she keeps worrying he's going to get hurt.

Cheese!!!

Stryder checking Haven out!

Playstation time
Haven on the laptop
Stryder making the rounds

Sunday, September 7, 2008

5 Months Down!!!!

I know...I'm sorry I've been slacked on this but it's not like I'm slacking in the Dr. Mom area!!! We are finally done with the medicine for the toes. As for the infection - it is finally cleared up! As of September 8 we will be 5 months into her chemo treatments and a year of steroids!!! I really hope by March we will be able to remove the port but I hear it will be at least 6 months after that before they will let us do that - just in case.

Haven is doing pretty well now. We have not been sick for a few days and the potty stuff is getting much better. She always has a week after that's pretty bad. Also with chemo everything seems to dry out. Her hair is so brittle and dry - I don't even wash out the conditioner anymore. I would love to see it get greasy!!! It just stays so dry. Her nails are very dry and brittle as well. As if the toe infection wasn't bad enough - her big toe on the hot foot is now split!! We get rid of the infection and the toe nail has split about 3/4 of the way down. She was bandaged up pretty well tonight.

I will be updating the site more. I have a few pictures and video to put on here. My brother comes home on Tuesday from Iraq for 12 days. Next weekend, as long as Haven feels well, my dad and I are going to take her, Tommy, Katie, and Stryder to Gettysburg for the day. My dad says Tommy wants to go but I think he wants to go! Should be a lot of fun. I'm really excited about my bro coming in. Also trying to figure out a way to get my cousin Erin over here for a few days.

Enough rambling....here is my princess:

This was Labor Day dinner at Grandpa B Honey's. I took her shopping to get a new dress for the holiday. She has been so into dresses lately. She had to have this because it's Haven Pink. She just wanted to get dressed up to hang out with Grandpa. Grandma wasn't there - she left for Korea early in the morning!!

OH...and then Thursday evening she received this beautiful gown (dress if you're talking to Haven) from Sister Terry Jones in Utah. She sent Haven a huge panda bear stuffed animal too. She has been sleeping with it since. I could barely get this off her to wash it - I had to buy her two more gowns at Walmart today so I could get her out of this one. She loves that it has Haven pink. Everything has to have Haven pink.

Haven has asked and asked for months now if she could have purple hair. I have had the spray to do it for a while but was worried with the chemo and never wanted to do it. But now I just want her to have as much fun as she can. So I sprayed her hair on Saturday. That night we took Gpa B Honey to Cracker Barrel. He was shocked to see her hair. While eating dinner she whispers to me (she sat next to Gpa). "Mom, I talked to a boy and he didn't say anything about my hair". She was really upset about this. So I tried to tell her how boys don't usually notice hair...just not a high priority. She was not happy. So we started giving people hints about her hair color and they started asking her about it. She had the biggest smile on her face!

While at Cracker Barrel Haven of course found lots she just had to have at the store. Uuuugggg....what do I do? :) Well, I bought her some snow (which she is making here) and Gpa bought her a rock growing garden. See the tank in the back. It was a beautiful day after the hurricane made it's way through so we just hung outside all day long. Now I have cups of snow and growing crystal rocks!!



Well....Kris rented Boom Blox for Haven and she has played it more than any other game out there. Not to mention she gets me addicted to it. Thought I'd put a little bit of video of her up here.

Last but never least: THANK YOU to everyone sending Haven stuff - STILL!!!!

Miss Dawn and the girls from Riverside Johns Hopkins have NEVER missed a week EVER this whole time. It's just amazing. They send her a package every week with a card. It's been 5 months...I'm just amazed.

Shirley Anderson sends Haven a package about every month....she's never met my angel.

Gpa and Gma in Utah have been paying for Lauren to be with Haven two days a week. Haven absolutely loves her. However, Haven was told by her dad that Lauren could only come one a day a week now because it costs a lot of money. The first time ever, Haven freaked out and started crying and was really really upset. She loves Lauren more than anything. After discussing, I told Kris we have to keep her two days a week and we have to figure out how. So we're going to try to lower expenses elsewhere to keep Haven seeing her friend 2 days a week.

Gma and Gpa Virginia have been sending Haven $100 gift cards to Walmart every month. This is awesome because I stock up on her diapers and her special requested cleaning supplies.

Aberdeen Bible Church has brought her many gifts and last week they brought her a huge bag with diapers, hand sanitizer, cleaning stuff, stickers, Walmart card (she got Aristocats movie), a check from a member of the church and cash. THANK YOU!!

Haven is working on handmade thank you cards. Lauren and her work on them together during the day.

I really want to thank everyone for thinking of my beautiful girl!!!!!


Love to all.....