So active.....Ready for School

I am amazed every day at how active Haven has been. Saturday night she was running up and down the hall with Stryder - she played with him on the keyboard in the pink room - and just had a lot of fun. SHE HAS NEVER gotten off the couch when he comes over. She used to just ask him to sit and watch TV with her.

Saturday evening around 8pm I received another phone call from the school and Haven's teacher wants to come on Monday!!! So we were excited but all of the sudden I noticed that Haven was getting nervous. So I had to make it fun.

Sunday Haven and I got up and grabbed Aunt Katie and went shopping at Walmart for school supplies. Katie is going to be an elementary teacher and the school didn't give me any info on what she needs to do her stuff. So Aunt Katie helped us pick supplies. I got her a little locker and she meticulously placed each item where it needed to be. It's fun to watch her because she is so specific on where everything has to be.

She is very excited to start learning.

Red Velvet Cupcakes

Well...we hadn't celebrated Grandma's or Grandpa's October birthdays yet and Stryder was coming over for the night. I woke up and told Haven we had the best excuse to make cupcakes!!! She hasn't baked or cooked in a long time and she was EXCITED.

Here she is starting the cake mix.


mmmm......red velvet cupcakes. It actually looked kinda scary - I never made red cake before.

We've cooked the cupcakes in the little feet and now we're planning to mix colors in the icing! This is the fun part!

Mixing the colors...we made pink, lime, purple, and blue. Haven put so much blue in the blue that I'm very scared to eat it. I accidentally got a small bit in my mouth and it instantly turned my teeth and tongue blue!!!

PS: red velvet cake stains!

Final result....beautiful cupcakes in the feet sprinkled with love! yummy.....

More ROHHAD Children

It seems like about every two weeks I find another ROHHAD family. This time there are 2 new ones. They found my site I created on facebook for ROHHAD Syndrome and I was able to check her web site.

CLICK HERE for Twin Cin-City -- her child is currently with Dr. Weese-Mayer

The other lady's name is Trina - from Newfoundland.

I don't know much about them - I have only recently found them. But it's great to finally have a place where all of us can connect!!!!

Friday Oncology

Yes this is Miss Haven playing with barbies. Kris said she played for over 20 mins! I know I sound crazy but she never plays!

Haven met with Oncology today and I'm excited because it came back that she has lost a pound and has grown 1/2 an inch!!! This is awesome. In May she was about 1% on the growth chart. We did HiCY and she bumped up to 5%. Since the last Endo meeting she has grown more! We have been relaxed on her diet due to everything she has been through....so it will be back to 1000 calories again. She was probably at 1500.

We don't have anything to report on the MRI. Her tumor remains dormant and stable.

Haven did not do IVIG today. Her immune system has been kickin buns and staying at a great level so far. They did another test today so if it's low she'll do it next week.

On Nov. 20th she will be in Oncology by 7:30 to do hormone levels. Her growth hormone was low in May when we checked so this will show what has happened in 6 months. I'm excited to see it since all the treatments and she has grown.

Laundry

HA HA HA.....Haven happily helps mom with the laundry!

Rough day at work

In the middle of playing her game on her laptop (as you can see Aunt Dottie made her stickers and she labeled her laptop with them) -- she passes out! She is completely asleep ---- I love it!

Schedule

MRI - set for tomorrow at 9:30am (thank you Dr. Paz-Priel for getting the time changed)

This will only be for the abdomen to monitor the Neuroblastoma tumor to ensure it has not grown in size. We were not able to get the head added to this one but I have been told they will make sure it is on the next MRI. You can never be too careful with ROHHAD.

Haven is usually out of recovery with in an hour. So I'm guessing this MRI will be approximately 4 hours long before they leave the hospital.

IVIG - set for Friday. This is a 6 hour dose for Haven.

She will get this on Friday unless her counts are still good. She was originally scheduled to receive it last week but her immune system has been holding steady since Dex. We will not know if she is going to have this until about 9:30 on Friday morning.

The past 6 months

first I have to thank Haven's doctor - Dr. Paz-Priel - he emailed me on Monday asking about Haven and how her trick or treat night went. Also about any new signs we've seen of her last treatment of Hi Dose Dexamethasone. I usually keep him updated on anything we notice that is good or bad via email. I hadn't emailed probably since she was last in there.

Since Hi CY this summer Haven has been able to go off her blood pressure medication, has started growing again, regained normal cortisol levels, sodium levels have remained constant instead of all over the board, AND she knows when she has to go to the bathroom! She was able to start wearing big girl panties during the day and could finally feel when she had to go and runs excitedly! Her energy level has gone up tremendously and she shows emotions we've never seen before! Sometimes she wants 20 hugs and kisses in a row......she likes to snuggle on the couch now and TALK YOUR EAR OFF! Even people she just meets - she will sit and talk with!

The part Hi CY didn't get was eating and drinking and weight. But to be honest this could still be affected since no one else has tried this before for ROHHAD. We have no idea how long it takes. It took over a month before she was able to regain the feeling of having to go potty after the treatment.

Then in September Haven started having thermal issues again - showing an old symptom had repopped up. Maybe taking away the more major symptom made this one resurface. She started getting the hot foot/cold foot again. Everything that was old that we forgot about.

So in October Haven went back in to isolation for High Dose Dexamethasone treatments. At first Kris and I weren't sure we really wanted to do this new treatment since it had only been 3 months after Hi CY. But the thought of not knowing what the heck ROHHAD is scared us even more. The doctor said we could wait 6 months if we wanted time to think about it but again we don't know if you let ROHHAD hang out and the symptoms stay if they become irreversible. Our fear is that since the weight was the first symptom 4 years ago that it may be too late to affect that and the damage is not repairable.

But we've seen so many good signs with the Hi CY and to not miss any valuable time Kris and I said yes and signed the billions of pieces of paper of everything bad that could happen. Just like we always do.

It has now been about 3 weeks since Dex and Haven has had a complete 10 days of no accidents at night - while sleeping! Her sleeping has been more sound and peaceful than ever. She used to snore and we haven't heard her snore even one little peep. Her O2 stats stay near 100 (they had dropped to low 90's during Hi CY). She is overall generally happy and finally wants to get off the couch and do something more than workbooks.

I'm not sure what lies ahead for Haven or what her doctors are coming up with next but I am happy we did this. Many people that know Haven can see the changes in her. We still battle weight but now that she will actually do more than sit we are able to work on that with some exercise. We still monitor her food and calorie intake and watch all sodium. She is still on a strict fluid diet - she can drink a 2 liter in 10 minutes and not feel sick.

All I can hope is that maybe it takes 6 months or 7 months or even 10 months but that the food and drinking become normal and the weight starts to even out with the growth factor.

It's hard but the doctor put it a way one time that has stuck with me "Yes you are great at monitoring her food and her drinks and when she can eat. But she is only a child. What are you going to do when she is a teenager and an adult? How will you control it then?" Therefore even though I am extremely happy with all results so far we must continue to push forward and figure this disease out before it has a chance to take over.

We also thank everyone that has supported us and helped us over the past few years! My job and the people I work with are amazing - we LOVE all the food all of you have made us for the past 6 months! I can't thank everyone enough. We love the fundraisers that friends and family have put on for her - Johns Hopkins loves it too because the bills get paid! :) The gifts and notes that make Haven smile and laugh and give her projects to work on during the day are priceless! That fact that you have read and continue to read about her helps me continue the fight.

We credit all of our strength and courage to Haven - if I was only half has brave as her.

We appreciate all of our doctors (even though I'm a pain sometimes) with all that they do and everything they research for Haven.

We also send out a huge thank you to Haven's nurses. They deal with more stuff from her than anyone. She feels so comfortable with them that she thinks they are only there for her. Even paging them to come give her hugs and kisses.

Trick or Treat

The Butterfly Princess

Haven was super excited to dress up. She had been waiting all day to dress up and get her make up on.

This was the first house we went to - my dad took us on base again. She was not thrilled but knowing candy was at the end of the trail through the graveyard she braved the walk. Coming back she ran as fast as she could.

Grandpa B Honey took her up to the doors while I took photos. She did so much better this year than last year.

Check out her big hair. It's starting to grow in so fast. She doesn't like it - I think she likes the attention she gets of the littles. But we think she is just adorable.

By 7pm it was raining pretty good so we had to pack it up. I didn't want to push it too much with her in the rain and a very low immune system. But she did fill her basket 3/4 of the way.

We got home and went through her candy. She was able to keep 7 pieces of candy and gave the rest away to The Great Pumpkin. The Great Pumpkin came in the middle of the night and exchanged her candy for presents. She got the new Tinkerbell movie and the new Ice Age Dinosaurs movie. Excellent swap we think and I'm sure her dentist will think!

We had a lot of fun and it was great seeing her laughing and running around. Next year she said she's going to mix it up a bit and go as Cinderella......when does the Princess phase end???? :)

Love to all

Doing the pumpkins

This is the first year Haven actually reached in to the pumpkin to pull the guts out. We worked hard to get all the seeds so we could cook them up and eat them.

It was about this point when she informed me - she often speaks in 3rd person - "Roos are very sensitive to pumpkin guts on their skin".....this means we better hurry or I'm doing it by myself.

Fishing through the goo for the seeds.

Miss Haven

These are just some photos Haven wanted me to take to share with everyone. She got a cute little doggie purse and had to have a picture taken.

This is half the babies she brings out of her room every day. They all go straight to the couch. She says she can't pick just one or two because the others will get sad without her. She is limited to 3 babies when we go to stores and it takes her about 30 minutes to decide which 3 go.