Always Something

The majority of our days are spent trying to prevent Molly from getting sick...disinfecting counter tops, sanitizing and washing our hands, wiping down shopping carts, tables, chairs, playground equipment, etc. We have hand sanitizer in every room of the house, both cars, diaper bag, purse, strollers and strollers. When we show Molly the Purell bottle she rubs her hands together. Where is that on the list of milestones because it's at the top of my list :) But no matter how hard we try sometimes it's just not enough. On Saturday we noticed that her poop was more wet but we just figured that she was eating a lot more things now and probably didn't agree with her. Sunday she was really crabby and just miserable. Monday she had a runny nose, cough and her sleeping wasn't great. Tuesday she seemed a little better but she woke up crying and sweating but she never had a fever, her O2 was normal (98-99) and her heartrate was normal. We assumed she just had a cold. We had been giving her Tylenol since Sunday just to keep her comfortable. Yesterday morning she woke up with a rash on her face. It was only on her face so I assumed it was because she sleeps with her blankie on her face and was hot. I emailed a picture to a few of our very wonderful nurse friends to see if they thought it was a heat rash because that's what we were thinking and they said that it could be. So we didn't put anything on it because that is always our first instinct. I looked up heat rashes for babies and it said to keep it dry, don't put anything on it and try to keep the baby cool by turning the AC on and putting a fan on them when they sleep which is what we do anyway. When she woke up today it had spread to her chest, stomach, back and diaper area so I took her to the pediatrician. She looked at her throat and it was red and where she's had a runny nose, a lot of muscous and a cough the rash is a result of a virus. It should run it's course in a few days. She told me to give her Benadryl which makes me nervous because when she was in the CICU they never liked to give it to her so I emailed our good friend in the CICU to find out why and it's OK to give it to her now. I gave her a dose and she took it in her mouth like a big girl! Oh and she weighed in at 24.6 lbs!!! That's up one pound from the last time she was seen at Growth & Nutrition.

We were also approached by one of the nurses that used to take care of Molly when she was in the hospital. Actually she's more than a nurse to us. She is a great friend and will always be a part of our lives. She took care of Molly from the day she came in until the day she left. I don't know how we didn't scare her away! She is running the New York City Marathon in November and asked us to be a patient partner in the Miles for Miracles. We are so honored that she picked Molly to take on this journey with her. She will be running 26.2 miles in honor of all of her patients and more specifically Molly. She is required to raise a minimum of $3,000 and we have agreed to help her out with this. All of the money raised goes back to Children's Hospital Boston and well, everyone knows how we feel about Children's Hospital. We are trying to think of fundraisers or any way to help her raise these funds. We will be cheering her on and are so proud of her. We love you, Kristin!!! You can follow her progress at www.runningfromtheheart2012.blogspot.com or read about the Miles for Miracles at http://howtohelp.childrenshospital.org/newyork/page/Kristin-Barber.htm#.UAT4ggWjEMk.facebook

As always, thank you for checking in our miracle!

Love, Kerry