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Monday…. by Haveyroo Posted in: Blog Posts in Cancer I spoke with pre-registration for Haven's surgery today.  We are ready to go!  First I have to say I don't remember paying $100 for every surgery before……anyway Haven is re ... Read on »
Haven's Timeline by Haveyroo Posted in: Blog Posts in Cancer Below is a short story about Haven's life after being diagnosed with cancer and a rare syndrome called ROHHAD. When I was 2 I was a normal healthy girl.  I liked to hel ... Read on »
Up coming surgery by Haveyroo Posted in: Blog Posts in Cancer Haven's surgery is coming up on Monday.  We don't find out what time until Friday.  I'm hoping it's mid morning to give us time to get the babies to daycare.  I spoke to her ... Read on »
The New Mask…... by Haveyroo Posted in: Blog Posts in Cancer Well we've tried the new mask for about a week now.  So far I'm not impressed and worry more than I did with the full face.  But I want to give it a chance and follow doctor ... Read on »
Sleep Study Results by Haveyroo Posted in: Blog Posts in Cancer Finally got the results from our sleep study and have to say it was what I was expecting. Her doctors here are able to contact her doctors at Hopkins and actually work ver ... Read on »
Pulmonary follow up by Haveyroo Posted in: Blog Posts in Cancer  Last week I took Haven back to Pulmonary for her follow up after being in the hospital for the week. The doctor didn't like her being on the full face mask so we te ... Read on »
Getting fresh air after hospital by Haveyroo Posted in: Blog Posts in Cancer After a week in the hospital we wanted to get Haven out for some fresh air and a walk Not to mention the babies needed to get out and get the sillies out We ... Read on »
Tonsillectomy and Adenoidectomy --- UPCOMING SURGERY by Haveyroo Posted in: Blog Posts in Cancer What does it mean?  Tonsils are the two round lumps in the back of the throat. Adenoids are high in the throat behind the nose and the roof of the mouth (soft palate) and ar ... Read on »
C-pap and Home Oxygen by Haveyroo Posted in: Blog Posts in Cancer Haven is now required to use a C-pap and oxygen at home.  So that day that we were discharged from the hospital we met with a respiratory therapist at the house.  He wa ... Read on »
ER & Admitted.Pneumonia to Pulmonary to Cardiology - ROHHAD by Haveyroo Posted in: Blog Posts in Cancer Friday February 7th, Miss Haven went to bed at her normal time after getting her shot - around 8pm.  Around 10am on Saturday she was still sleeping and having very labored b ... Read on »
Labs for Birthday by Haveyroo Posted in: Blog Posts in Cancer Haven with one of her favorite nurses Danielle.  She only likes Danielle accessing her port.  So we make sure all labs and IVIG is done on Danielle's weekends. J ... Read on »
Haven's 10th Birthday by Haveyroo Posted in: Blog Posts in Cancer Miss Haven wanted to have a Minion party for her 10th birthday with a mix of girly girl.  So this was the theme.  It was a very nice birthday.  Grandma from Virginia ca ... Read on »
Sleep Study by Haveyroo Posted in: Blog Posts in Cancer Miss Haven hasn't had a sleep study since October 2011.  That was done at Johns Hopkins before we left Maryland.  So it was time. We met with her new Pulmonary d ... Read on »
Ear Infections!!!! by Haveyroo Posted in: Blog Posts in Cancer My little boy has endured 10 ear infections in 6 months.  So immediately following my latest trip to Asia he was scheduled for ear tube surgery.  This leaves only one Fowler ... Read on »
Hong Kong January 2014 by Haveyroo Posted in: Blog Posts in Cancer My trip to Hong Kong usually includes Japan.  I love this scheduled flight because it's the 787 Dreamliner!  If you have a chance to fly on this plane - take it!!!!  I ... Read on »
Shanghai January 2014 by Haveyroo Posted in: Blog Posts in Cancer I've never been able to visit Shanghai or Hong Kong during Chinese New Year.  So this visit was amazing to see all of the decorations and how they prepare. My co ... Read on »
Bangladesh January 2014 by Haveyroo Posted in: Blog Posts in Cancer Immediately after the holidays I shipped off to Bangladesh, Shanghai, and Hong Kong again for the first few weeks of the year.  Leaving the hubby and babies alone.  I resche ... Read on »
IVIG for Dad's Birthday by Haveyroo Posted in: Blog Posts in Cancer We were finally able to set up Haven's IVIG at a hospital closer to the house.  We've been driving over an hour every time to get Haven to the hospital.  Now we only ha ... Read on »
Endocrine visit! by Haveyroo Posted in: Blog Posts in Cancer Well Miss Haven has been on the growth hormone shots for about 2 months now.  We went in to meet with Endocrine the week before Thanksgiving.  This was to make sure Haven w ... Read on »
Thanksgiving Dinner 2013 --- Mom's first try at turkey! by Haveyroo Posted in: Blog Posts in Cancer This was our first Thanksgiving dinner on our own - no parents to cook for us.  Time to figure out our own traditions and what we like Haven started the morning off ... Read on »