Home school tomorrow

Well - we're excited and nervous but Haven starts her first day of home school tomorrow. A teacher from the district has been hired to be Haven's teacher for the year. She will come 3 days a week and will leave homework with Haven to do and turn in each day. We are excited but I think Haven is nervous. We worked on her sight words tonight and she was exhausted after an hour. Hopefully she will be able to handle a few hours each day.

Since doing all her treatments this year - Hi CY and High Dose Dexamethasone - she is unable to go to school because her low immune system. She can't be immunized nor can she get the flu shot. Leaving her too high risk being around other kids. So this is great for her and I don't have to worry about her being alone at a school.

Since Haven is showing excellent results for many of the ROHHAD symptoms she is now on every other Friday schedule with Oncology. Another exciting marker...as she had been seeing them 3 days a week. I don't have the results from her hormone testing yet but I'm sure it will be discussed on her next visit - November 20th. I've also put a call in to her Pulmonary doctor to schedule the next sleep study and to meet with him to check her over. They had wanted a lung function test before Hi CY but it all happened so quick we didn't get it done in time.

MRI of the tumor looked awesome! Everything is stable.

Barbie time

So she had so much fun playing barbies at the hospital that I bought her two with some clothes. I believe she stood here for about 2 hours playing. Just constantly changing the clothes on barbie and mix/matching outfits. The only issue is that mom is not good at buying barbies and the "beach" barbie is flat footed so she doesn't fit in the spiked high heels of the normal barbie!

lesson learned.....so now she wants to ask Santa for a bunch of barbie stuff.......I think we just became a girl! sorry daddy...it had to happen!

Hanging with Stryder

First I couldn't believe Haven played with Stryder Saturday night...got off the couch...played in another room.....now her Aunt Katie bought some moon sand for Stryder and we were hoping Haven would play. Katie did it. She got Haven outside and actually got her touching and playing with the sand.

Stryder loves when Haven plays with him but Haven is very particular about certain things. They had a lot of fun but Haven did have too many rules for a 2 year old to like. So he started doing things just to drive her crazy. It was hilarious.

I am so happy she played with him. She hasn't really been around kids since getting sick 2 years ago...we are slowly trying to get her to understand before putting her in a school setting next year.

They probably played for about an hour....most of that time they played by themselves together. I am so happy.

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.