Monday, May 31, 2010

Ready for Graduation

We had a great long weekend. I got off work at 2pm on Friday and rushed home! Slept from 3 - 5pm with Miss Haven and Deezy....then I don't know what we did which was even more awesome.

Haven's doctors were extremely pleased with all her numbers - even if I wasn't happy. They somehow always make me feel better about them - I tend to look for the negative instead of the positive. We will find out in a few weeks if she needs to go in for another round of IVIG or if she will get the surprise immune testing again. Her nurse is headed to India for a few weeks to help out over there! They are AWESOME and I'm super happy for her.

Saturday was boring - which is GREAT! All I did was go to the grocery store. We kept Haven in the house most of the weekend due to the heat.

Sunday was lawn day.....I mowed all morning and the heat killed me. Then later in the afternoon my sister and nephew came by and my mom's friends for some dinner. Chicken, ribs, and pork chops......Memorial Weekend couldn't have better food.

Then today Miss Haven decided it was time to get her ears pierced. She wanted them done before graduation on June 10th. So we took her to the mall with her numbing cream on her ears. As if she'd feel it anyway, but it made her feel better. She did great....

The girl was very nice and made sure Haven was happy. She gave her a stuffed animal to hold. Haven picked out some pink jeweled flowers for her first set. She learned all about how to care for them.

This was as bad as it got for her piercing. The woman was so excited about how easy Haven was. She just couldn't believe it. People were watching her through the windows ready for a scream and cry. She did her ears and Haven hopped down and went shopping for earrings!


Afterwards we took her to Red Robin for linner (lunch/dinner). She really hates when we mix two meals in to one! :) But she had a huge special drink for her piercing and doing so well. And yes....we have lots of teeth that are extremely loose....if she'd only pull them. She'll be with out all of her front teeth if they all come out at the same time!

I think we also found a graduation dress...but who knows. She's such a girl that I'm sure the one I got just won't do by the time graduation gets here.

Thursday, May 27, 2010

Oncology appt

Miss Haven has been doing so well lately and absolutely loving school. It almost feels like what a normal life should. I never would've thought a year ago we'd be on no medication and in school. She is still on her 2 hour a day schedule and will finish the year with that. Her graduation is coming up so we're excited about that. Gma and Gpa B-Honey are going to come and watch her get her awards.

She has a big day at Oncology tomorrow. She is expecting to only do labs - which is an easy day for her. She actually hooks the vials up to her tube in her chest and switches them out. The nurse just watches over her.

We're really expecting to see her weight drop. I am very hopeful. She has been walking to and from school every day since starting. She is playing at recess now and really loves her computer class. If she is good all week she gets to go to the school bookstore and buy a new book. I even got a demanding phone call that I HAD to take a day off of work to read 10 books with Haven. I'm not a reading fan....so taking a day off work to read 10 books is worse than working over time! :) That's Dad's job!



It has been so extremely hot lately that we had to shave Deezy down She just overheats so fast. But Miss Deezy is doing great too. Haven is trying to teach her how to speak English. It's not going very well. I get a daily phone call from Haven with Deezy's progress.

Deezy has been doing a great job of guarding the house. She has saved us from the raccoon twice now. However, she does get upset with Haven and even tried to attack her during a sleep walking episode. She gets very upset about Haven yelling and screaming from her bedroom.

The picture above is her favorite spot. We have to leave the chair there so Deezy can look out the window and let us know when people are too close to the house.


Haven has pretty much taken over my facebook account. she loves all the games on there and is currently building her islands in Treasure Isle. So if you're getting fruit requests...blame Haven! :) She is a computer hog! :)

Will update everyone with Haven's numbers as soon as I have them.

Thursday, May 20, 2010

Having fun

We had a great weekend with Stryder and Aunt Katie. We haven't seen them since Easter so it was good to get out there and play. Stryder LOVES soccer....so it was pretty much "Soccer Time" all weekend. Even Grandma and Haven got out there to kick some balls around.

This little boy is crazy about Soccer.....

Haven and I always do a girl's day on Sunday and go out for breakfast. We were happy to have Stryder, Katie, Gma, and Gpa along this time! We had our yummy cinnamon pancakes.


Deezy not letting me take Haven away for the day. We usually spend a few ours out at the stores and Haven gets her nails done. Deezy wasn't going to have it. Of course Haven won't leave Deezy if she's sad.

Haven is doing great. I can't believe this time last year we were preparing for 3 surgeries and a heave dose of chemo and locked up in isolation. Such a change in my girl. It's amazing to see how far she has come and how well she is adjusting to what could hopefully become a "normal" life!

She also has another loose tooth....so that tooth fairy has been alerted and is waiting. Haven wants me to buy some more corn on the cob since this is what knocked out the other tooth! Funny the dentist said she wouldn't lose any before age 7 due to all the chemo...but they just keep popping out!

Next appointment is on May 28th. She will go in and get all her lab work done and see Oncology. Not sure if they will surprise her with another round of immune testing. But we're excited to see if she has lost any weight or grown. I haven't let myself put her on the scale at home since April...so I am very hopeful to see some good numbers!









Thursday, May 13, 2010

Need sleep....

Miss Haven on a lunch date with Dad. McD's oatmeal - 260 calories - 4 gms fat = perfect lunch!



This has been the week of no sleep. Haven has had a cough since Sunday.....it's pretty deep in the chest and then with the medicine recall by McNeil for children I lost everything in my cabinets. Since it was just a cough I figured it was just allergies and no worries.

Monday she took 3 naps after school - all around 1.5 hours each. Just couldn't stop sleeping. By the time I got home she was running a temp of 99.5 ----- so we prepared a bag in case we had to head in to the hospital. Dad ran to the store to find any meds not made by McNeil and found some Robitussin. We gave her a little and she went to bed around 7:30. By 10:30 she was wandering around the house in her zombie sleep walking mode. We kept taking her back to bed. I finally passed out but Dad stayed up all night with her and he finally went to bed at 6am. We were concerned a spike in temp could bring on a seizure....but it was just a night of sleep walking.

Tuesday night was perfect. She slept all night - I was in bed by 9pm.

Wednesday was more sleep walking and coughing. Even this morning at 7am she was sleep walking. I told Dad it might be a rough morning getting her awake for school. But some how she snapped out of it about 20 minutes later and was ready to get to school.

I don't know if anyone will ever be able to help us with the sleep walking but we're exhausted.

Tomorrow Haven has a Field Day at school. She will not be participating as she is unable to due to the port in her chest. But she will hang out with Dad all day at school and watch the events. Then Dad is staying for lunch and she will have her lunch at school with the other kids. He is going to meet the lunch room people as Miss Haven will start staying an extra 1/2 a day at school and eat lunch with her friends.

We can't have her stay full days yet because after lunch is nap time and the teachers and school is very concerned about her going in to a sleep walking mode during nap time and them not being able to bring her out. This is fine......I wouldn't want her to do that either.

Baby Stryder is coming to visit this weekend -- so we are super excited. :)

Wednesday, May 12, 2010

SCHOOL FUNDRAISER!!

Hi Grandparents and Aunts and Uncles and friends......we have a school fundraiser and even you can join in to help though you live miles and miles away! We're selling candles! This will all go to help Haven's school and activities next year. Orders must be placed by Monday May 17th!

Check out the web site and you can order online and have it go in her name! Web site is: www.abbycandles.com

What's cool is that this isn't like when I was little and you got pencils with erasers for selling....you actually get Walmart gift cards!

If you do order and you do it online - when you go to the checkout screen there is a section to put in the school name and the participants name - Haven Fowler. I made a sample of the screen to show you.





I'm a candle freak so I'm actually happy to not have to push junky candy on anyone!


thanks everyone......

Tuesday, May 11, 2010

Haven's little ROHHAD updates

So last week I got an email from Haven's Oncologist that he needed to urgently talk to me about something but not to worry or be concerned. Isn't he cute???? Oncology says "urgent" but "not to worry" in the same sentence! Anyway, so I talked to him for a while the next day and it really was nothing to worry about. He is working on something about Haven and her ROHHAD and Ganglioneuroblastoma Cancer and needed my opinion. Which is very very nice of him - not all doctors will call to get your approval on something that isn't medically treating your child.

He is a really great doctor and it was very nice of him to say that even though he mocks me, laughs at me, or makes fun of me he truly wanted me to know that I am a great mom and is grateful for the fight in me and how I made people listen to my concerns to help my daughter. But I had to remind him that I wouldn't have my daughter if he, Dr. Badgett, Dr. Cooke, and Dr. Cooper hadn't worked together to diagnose her and save her.

He also asks about the other kids with ROHHAD. He had spoken to Denika's doctors in Canada at Sick Kids. So I gave him little updates on some of the kids.

He informed me of the last 10 months recap:

  • Haven has not gained any weight in 10 months
  • She has grown
  • Sodium levels remain at normal rate
  • CO2 has dropped 5 points
  • She is once again potty trained
  • Personality has changed and she is laughing and singing now
  • Blood pressure is normal and we haven't been on meds for 10 months
  • She is going to school part time

I am very happy he had the guts to make a stand and give her a treatment that no one has ever tried on this disease and it finally feels good to have complete trust in a doctor.

Mother's Day


Haven and I had a great Mother's Day. Saturday we all took my mom (and dad) out to eat for Mother's Day. Sunday was a relax day for Haven, Me, and Deezy. Just us girls and we hung out and pretty much just relaxed all day long.

I got the coolest present ever from Miss Haven. It is proudly hanging on the wall. I just love her little hands. She is the best I've ever received in my entire life......I love this little girl.

Wednesday, May 5, 2010

Picture Day

Today is picture day at school....Haven was very very excited! However, Miss Deezy was not. She did not want Haven to go to school and leave her today. This puppy is soooo funny! She will now mope until 11am when Haven comes back home.

Tuesday, May 4, 2010

Depression

Yes...depression hits hard when Haven goes to school. Deezy is so mopey during Haven's school time.....good thing for Deezy - Haven only goes to school for 2 hours a day. Once Haven comes back through the door Deezy is happy and playing again!