Mom and Daughter

These are pictures of me and Haven at about the same age. I found my picture last night....Can you guess which one is me?

We're both about 18 months old! Where is my hair?

Very Good Appointment

Well I believe we are happy with our appt today. I am very happy when
doctors listen and don't assume.

We discussed Haven's diet, which is, under 1000 calories, no sodium, low
cal, no sugar, limited processed food.

We discussed her sleep issues briefly and there is a concern of her
sleep walking and being hooked up to monitors.

We discussed briefly our process of finally being diagnosed. He
couldn't believe we were only told that we were overfeeding her for an
entire year and three different hospitals and 4 MRIs. Not an acceptable
diagnosis.

We talked about how the doctors at JH found her cancer and ROHHAD.

Sleep studies were talked about and I believe he kinda agreed with me
that one sleep study with partial sleep is not enough for Haven because
she doesn't really sleep anyway. But we'll meet with Pulmonary tomorrow
to discuss all the breathing and sleeping issues.

Haven's heart was a bit high today when they checked. She also had an
Echo done. We will pick up her heart monitor tomorrow. She will wear
the holter so they can get a constant reading of her heart.

The doctor told us if she goes into the 140s its ok AS LONG AS she drops
to the 80's or so when sleeping. He wants to see a lot of variations in
her heart at different times of the day. He is happy with her blood
pressure medicine. But said a constant high heart rate is to much
stress and causes damage eventually leading to failure.

Haven did very well. She is always a bit freaked out when doctors push
on her belly. She doesn't like them messing around her scar. Which, by
the way, her scar across her belly is healing awesomely! You can just
barely see it and it stretches across her entire belly. Her port scar
is still pretty visible.

Will update more later!

--misty_vassago

Cardiology

Tomorrow will be our first meeting with Cardiology. I'm not sure what will be discussed or how we will begin bringing them in to the mix of Haven. But I have been concerned about her heart so I'm sure it will be a good meeting. Our appt is at 8:15am so it will be an early leave to get through traffic.

I'll update if we have anything to report.

If you look to the right sidebar - I have slowly been updating and organizing blog posts. As you can see it is now giving me more work to do but easier to keep updates on everyone, news about our illnesses, and cool stories from our friends. I have a lot more work to do and will continue to update each one.

thank you to everyone for always checking up on our baby!

Sleep Walking getting crazy!

Sleep walking is what keeps us up now!

This past week we have been fighting robots. I don't know why but we are. About a week ago Haven had a horrible sleep walking episode that lasted over 40 minutes long. I had just gotten in the shower and I hear a scream (or I thought I did) but I ignored it. Then I felt thumping and what sounded like running. I stopped, listened, nothing. So I pour a bunch of shampoo in to my hair and there it is again. Major thumping and running with a door slam. I get out, yell for Haven and I hear this quiet - "hello" come from her room. She runs in to the bathroom with me - SHE'S COMPLETELY ASLEEP! So I have her hold on to the sink and not move. Finish my shower and during this entire time she is telling me about a white robot that is chasing her and looking for her. I get her in to the room, tell her dad that there is a robot chasing her, he informs me that he already knows from her horrified scream as I went in to the shower. Remember, the one I ignored. He destroys the (imaginary) robot and she is happy and back in bed.

Then about 3 days later we have another robot incident...which leads in to another one that kept her up freaking out until 1:30am. I am done with robots. I have no idea what robot she is talking about. But the hallucinations or sleep walking episodes are making me crazy!

Haven has some crazy episodes - we've had a few nights of bugs being all over her and having to wipe down walls and her to get rid of the (imaginary) bugs, we have Spongebob chasing her and staring at her - so he is no longer on her walls, we've had angels chasing her around and staring at her - so we removed the angels that were on her walls. She's had some other ones that would really freak you out so I will leave them off here - as they have really freaked me out many times.

Now my question remains - if my child is a major sleep walker with violent episodes - how do I put her on an O2 and CR monitor during her sleep? Guess that will be discussed this week at Cardiology and Pulmonary!

The Bunny Visits

Happy Easter everyone!!

Last night was pretty funny. Haven was actually terrified of the bunny before bed. She was extremely worried he would come in to her room while she was sleeping. She was afraid to have her TV on because he might think she was awake and she wanted her bedroom door locked. I couldn't stop laughing. I reminded her that the gate would be up in the hallway and he definitely wouldn't go past the gate and I had to shut her door most of the way. Around 10pm I went in to check on her and she had the blankets over her head and was sweating like crazy and she was awake. I convinced her to take the blankets off and we covered her eyes with a cold wash cloth. This let her finally fall asleep.

Grandma Virginia sent Haven some more Easter decorations for her tree and we put those on in time for Mr. Bunny. The eggs are just beautiful.

The bunnies in the tree held dollar bills - Haven decided a few weeks ago that she likes to collect dollars. She gets so excited when she gets a dollar in the mail - so the Easter bunny just had to leave some dollars for her.

She woke up around 6am and was so excited to see if the bunny came. She took off running out of her room and checked under her Easter tree. Hmmm...seems the bunny brought a few jelly beans! :) She did get to have a couple since it is one special day. He also left little eggs filled with random items all through the house that she had to find.

It's 1:15 and she is currently on her 2nd nap of the day. Her plan when she wakes up......to play with her barbies. So funny that she plays with Barbie now. I think she spent 3 hours this morning changing their clothes.

Love to all - hope everyone has a wonderful Sunday! :)

Waiting for the bunny

Well.....it's almost time for chemo (8pm) but we have been waiting for the bunny all day. Haven has been hoping for certain things from the bunny tonight and has been wishing a lot, she says. Grandpa B Honey took us all out to dinner at Haven's favorite place - Cracker Barrel. She likes this restaurant because it has a store! :)

Then we went out to Target to get her to walk around for awhile. She had so much fun just browsing we ended up staying at Target for about 2 hours. I have never seen a 5 year old have more fun in the pots and pans section - I was bored out of mind - but she had fun. She taught me all about certain pans and what they are used for. Then she showed me the as seen on TV section - they had the snuggie, the sliders, and the pedi-egg. She really wants a pedi-egg --- why - I have no idea.

But we're getting ready to take the evening dose of medication and then happy dreams of eggs and bunnies!

We hope everyone is having a great Easter weekend. Love to all!

Haven's Diet

I would like to ask and stress that if you are sending something to Haven PLEASE no candy! We appreciate the gesture but Haven is not allowed to have candy. She is on an extremely strict diet and every once in a while we will decide to let her have a treat but we can not have candy or sugar foods in the house. Haven is on an extremely low sodium, minimal sugar, and low calorie diet.

Yes she loves to receive candy but it must immediately go right out the door. It causes many fights and arguments in our house because once she sees it that's all she can think or talk about.

Please do not send candy or salty food. We just can't have it here. Sorry to sound mean but it's for her health.

Thank you

We finally like Barbie......

Haven decided today that she finally likes Barbie. She has NEVER played with dolls in her entire life. The other night she played with a wooden doll that had magnetic clothes and really had fun. Today she received a package from Grandma and Grandpa in Utah with what looks like a Bratz doll (hmmmm.......) and she has been playing with it for over 2 hours.

She even got her other dolls out that people had sent to her at Christmas. You may think I'm crazy because I'm excited my daughter is playing with dolls......but she NEVER has ever before. She never plays and over the past 2 weeks she has been playing like crazy. She sits by herself and just plays.

She plays, she talks more, she has a sweeter personality, she asks for food less, she SLEEPS all night long.......I am a believer in this chemo treatment. I believed in it last year and I feel the same way now. My daughter has never laughed like she does now and has even teared up during movies. THAT IS AWESOME!

Oh....she got a Walmart card in the mail yesterday from Laurie Bowes --- so guess who has to go buy clothes for her Barbies tonight! :)

Strabismus - FIXED

Everyone has been asking me how Haven's eyes are doing and how they look.....check her out! She is wearing her new robe Great Grandma Ohio sent to her. She has been begging for robes! She actually looks like a little Smurf to me! :)


Her eyes are doing great. She handled surgery and recovery AWESOME! She did want to know EXACTLY what they did to her eyes. I didn't tell her - I told her I'd tell her later when she's older.

You'll notice one pupil is much larger than the other. During the past year Haven's vision in the left eye went from 20/25 to 20/70. We began Atropine drops last November to get her prepared for surgery. After surgery they tested her eyes and her vision has started to improve slightly. THIS IS GREAT NEWS TO US!!! So we are back on the Atropine drops twice a week.

What they do is actually blind the good eye (big pupil) and force her brain to learn to use the bad eye again. The doctor wants us to make sure she is doing lots of workbooks or coloring books as it will help with the vision more than anything else because it makes her have to focus more and work harder at it.

Updates

Cardiology appointment set for April 15th

Pulmonary appointment set for April 16th

Endocrine appointment set for May 4th

Oncology --- ha ha ha....we see them all the time


NEW EMAIL: haveyroo@gmail.com

I had to switch emails due to my numerous offshore accounts and lotteries I've won in the past few months since having my ATM card stolen. Please give me a few days --- I can't even figure out how to add a contact to my address book! :)

ROHHAD: Cardiology -- Pulmonology

These are the two next big doctor appointments we have.

Cardiology has been added as an extreme importance. Haven's resting heart rate has been staying around 150. It has been constant around 130-150 for over two months. But I remember her in the hospital last year and it stayed around 140. We should find out next week when this appointment will be made. She will wear a monitor around her chest to monitor her heart rate while awake and active. I received some emails about heart rates and emailed NIH and our doctors. The first number being on the low end (some of our friends stay around this when resting) and the second number being on the high end.

EDIT: Just heard from the doctor - they use the Harriet Lane Handbook for resting heart rate calculations:

Ages 5 - 7:

Low End: 65
Average/Normal: 100
High End: 133

According to NIH resting heart rate:

Newborn infants: 100 - 160 beats per minute
Children 1 to 10 years: 70 - 120 beats per minute
Children over 10 and adults (including seniors): 60 - 100 beats per minute
Well-trained athletes: 40 - 60 beats per minute

Her doctors are also putting in a referral for a Pulse Ox monitor. We didn't believe we needed one only a month ago but on Friday I received an email from her doctor and the referral has been placed. She will wear this at night when she is sleeping - it will monitor her heart rate and oxygen. I am very relieved to have the doctors ordering this. I have been extremely concerned about her during her sleep. This will at least ease my mind a little.

Pulmonary will be on April 16th. This will be a very important meeting and our first with the doctor. We will discuss all of Haven's sleep studies, the ABG, and other information that I have received and noted from the other mom's that I am concerned about.

Endocrine will be on May 4th. This will be our 6 month follow up meeting.

Oncology also informed Kris that every Friday Haven will now have full labs done - not just Cyclosporin levels. They will test the hypothalamic hormones, Cyclosporin levels, sodium levels, and other needs for the lab testing. This is more than Haven usually has but is needed for the records and to see if anything is changing, good or bad.

Haven will continue on this chemo treatment for one year. At 6 months the Oncology team will review all of her results with the medical board.

There is the small quick version of it all.
Thank you to everyone
Love ya